Cee Gee's reflections on Hep C and life

this will be deleted .

2010-05-16T17:32:00.001+02:00

There has been a reason why I haven’t written here for a long time. Mostly it has been bitterness that drew me away from putting my thoughts down.Also it has been a kind of sadness. The likelihood of my ever doing another course of treatment is very remote. Mainly because I haven’t the finances left to carry on trying, the strength to do so, nor the ambition to do months of treatment only to fail once again.
The preceeding months to this short note haven’t been the best times of my life. I have grown weaker in body. Needing to use my upper body strength a lot to get by for simple things like simply standing, it has finally failed me. I no longer have the sustained strength to exert the muscle action to do just such a simple taken for granted thing . I tried to return to work early last year and even quite recently. Recently, more through necessity than last years failed attempts. I find I get confused quite easily now. I battle to hold a train of thought for any period of time. I get big blank periods where I ‘m not sure what I am doing or where I am.The cramping of my legs and arms are painful and regular. the loss of sensation below my knees almost complete. They feel like strange attachments ,not part of me but very sensitive to anything that scratches or presses on the skin. The loss of sensation is more one of a lack of feeling deep inside my lower limbs. I feel pressure but it seems like I have had the limb go permanently asleep on me. Hard to explain as I am loosing the ability to form words. I forget .
I have been left with a feeling of disappointment in my long time employer. I worked at the company from almost the day it opened, I worked for low pay when it was in difficulties. Worked 30hr shifts without a break when the pressure was on. Took problems home to try and solve them for the following day. Times when I was injured on duty I just carried on working to get the job out. I did this and more for 24 years. I received not one penny in all that time that I didn’t work for. In fact I had been short paid frequently, had holidays not paid to me. Went 2-3 weeks a few times when the money was short before I my salary was paid. All that never really bothered me that much. what is upsetting is I get a phone call that they want me to resign one day, 2 days later I get another call, no I must come back too work as they were overloaded. I worked for a week or so but this sickness is too strong and I was getting sicker daily. So I told them that I couldn’t do the heavy work that they wanted. So 3 days later they want me to resign again. So I said no fire me. What I get is an e-mail from a secretary saying there is a letter I need to pick up.( Wouldn’t say what it was about). The letter was all the necessary papers needed for the unemployment office. Not a thank you for your service, card or even a letter wishing me well with my life. They even made an appointment time so that I would pick it up when the owner/boss wasn’t there. So I hope the little snot nosed bum boy catches a syphilitic sore which rots his festering ,kiddie ,didling ,knob off. The butt licker didn’t even invite me for Xmas lunch this year past and I had worked 4 months in that year.I wish him a long and prolong life, where he can suffer long and slowly, as parts of him rot and fall off.The last thing, seconds before he melts into a putrid puddle of puss, that he will feel or smell in this world is the big pile of shit he is. Wow that feels good.lol.

I’ll delete this later but that was cathartic..And bugger if I don’t publish it with the hopes that one of these hoar's from the pits of hell that scratch his ballsack read this and tell him.

Today

2010-03-05T10:57:00.001+02:00

There is a great sadness in me.
It didn’t come suddenly .It has grown in the months post my last relapse report.I put a lot of energy into doing the treatments. There was hope that I would actually beat it. I still do ,but circumstances are against me and I for one cannot see away clear of things. I have had to fight all my life to have one that at least held the semblance of normalcy. Up to recently I had always managed to work around things and through effort achieve what was necessary. Outwardly I look healthy enough, it isn’t always the way the the virus shows it’s presence,the way you look. Fatigue and other things like stiffness, water retention, pain and what we call brain fade had driven me to do the treatments. Been 6 years now,since I first treated, maybe the progression was slowed by the treatments. But my functionality has increasingly reduced. Discomfort has multiplied and I have never been so weary of life as I am now. My body and spirit is tired.
Financially I’m, so to say, in the kennel.This illness has taken from me my health, such as it was. My wealth and the spark of what was me. Nothing left. The last few months I have been trying to find a way to survive in the world, pay bills and continue receiving some form of medical treatment . I have found no solution, the will to work and earn is there , but in reality I no longer have the capability.

To survive each month I have had to pare back on my standard of living. Draining my savings and investments. All the time hoping that I will start to improve health wise and get going earning again. Dieing now is the reality for me. I accepted that a long time ago, I had hoped that it would be quick and relatively easy. But it seems I will go out slowly , struggling and finally hating life. I only hope that it will not be too messy an occasion.
I have no wish to see my family, dragged by my expenses in trying to remain alive, living in poverty. I know what stress finances has put on me, that doesn’t help my health either. The stress it is causing my wife and our relationship is getting a bit much now. It is all I treasure, have treasured in life. So it may be time now to plan that party.
Sorry I can’t invite my friends ,but this will be a one man occasion I’m afraid.
But one thing I can honestly say. I tried my best. I did it almost alone and apart from a few words, mainly platitudes, received no actual support from any one.
Financially the company I worked for has not given me a cent more than I worked for. If anything they have actually taken from me, what they owe and haven’t paid for ,quite often over the last 24 years. They have been no help at all. I have had to find out all what I may be entitled too on my own.
Find out who I may need to contact about the legalities of my next move without assistance from the management.
I could actually drop them in the shit as I know where the skeletons lie and what illegal transactions were done, but I will not.With them I feel disappointment not anger. Their turn to stand in my shoes will come.
Do I feel bitter, yes I suppose I do. But then again it will get me no where.

This is today. A blue day. I have had a few consecutive blue months. I think I’m allowed that indulgence.

Thus it rolls to a gentle halt.

2009-12-31T15:06:00.001+02:00

It has been that kind of year for me. It started with promise and spluttered along for a few months and then just went I don’t know where . Can’t say it has been a bad year. Any year that you can see to the end must rate up there amongst the best . Can’t say I have had worse, the words “it will get better” spring to mind, I probably have, but they are far back in the place of no affect and little regard. The most out standing occurrence is I have actually got through to the end of this less than remarkable year.
For me the fight against the virus is over, not my willingness to fight against it, just my financial ability to do so. Survival is all that counts now. Finding the resources to provide for my family for an undefined period alludes me. I am no longer capable of work, it is also a bit of a moral kick in the pants how I have been treated by those at work . Discarded , consigned to the trash heap. If I was bothered to feel anything for the plebes who have back stabbed me so they can work over time and give me false plastic smiles and sly words that they want me back at work, which is a blatant lie. I would get a bit of satisfaction of dropping them in the mire . But they are not worth the spittle necessary for me to part my lips. Yes I am slightly miffed. But I OWE NO MAN ANYTHING and refuse to be put in that position .
So for me, any treatment has flown past it’s sale date. No work. no cash , no prospects. Next year can only be an improvement on this one. There was for a time a great sadness in me, but that has passed. Truly one is as alone as you make yourself. I needed to be alone , probably still do. So as it bumps to an end I have a lot to find next year , how much strength I have in me to move on and beyond.

Nunc Demitus

2009-10-05T12:59:00.001+02:00

Today is the one of many similar non events. The filler in ,between days. The only thing to remark about this one is I woke up, eventually.Will I comment on how my body is functioning, probably not. I am alive and I guess that is better than a lot who didn’t make it through the night.Am I depressed, clinically yes, but I have had much worse and still found my own presence with me.What has changed? I am no longer me, I’m not even someone else. I am nothing, neither dead nor alive I am just here.
Burned out, tired of life and tired of being.
You imagine that when you are drawing near to the end of things that you get a sense of release. That time when you have achieved that what was meant for you.I guess it is not so. I think it more a slide into not really giving a damn because it doesn’t matter for you any more.
If it was a case of accumulating positive thoughts and prayers, hugs and good wishes. Then I should have an over abundance of such things.
Inside I hold tears which I have no way of releasing. There comes no respite, I dream the dreamless sleep of those who are world weary. My tiredness is not just physical, it is me. My spirit, hopes and thoughts are tired. It isn’t the tiredness of well spent energy, of a good thing done of having achieved. It is the tiredness of those who have strived, put everything they have into achieving, only to have it taken from them at the last minute .Also ran’s in life. I am an also ran, although more of an also plod in my case. I am in the crowd, unremarked as a runner, of people in a marathon. The finishing line is just that little bit further on and out of sight. Who remarks about those who are not last, but fall out in the middle, who really cares.
Still not a good time for me to blog so this is it.

Just a chat

2009-08-11T11:19:00.001+02:00

It is the first time for many weeks that I actually feel a little better. Strange that it is so, because for a couple of weeks now I have been fighting off the flu.Not the porcine variety, just the common , everyday virus. I think that for a while I shall leave the Hcv side of life alone. There is more to living than continuously trying to get on top of this pest. I have read enough and talked about treatments with many sources. At the moment I can do nothing, fit or ill doesn’t make a blind bit of difference what I try, so although I am not giving up I need to move on from here.
I wonder , even reading back on this blog , when I made the change from living to that of just existing.There has been a change and I have wasted this year for the most part. I guess in my inaction there has been a sense of security. If you do nothing you cannot fail and that is what I have done. I stopped doing things. Tiredness as got to be a habit, it is not that I don’t feel tired as I do.It is that I expect to feel tired and do less because of that expectation.

I do a lot of reading on forums.Although the names change, the general ebb and flow of the subject matter remains the same. There seems a greater turn over of members than before ,which could be that significantly more people are doing treatments and have obtained a positive result from doing so. But there also seem to be quite a few old slags like me who are still battling to get a grip on this thing. What I do notice is that it appears that people don’t read the old threads, so certain questions appear time and time again. I think that there is a bit to much technical information put about on forums. Okay for people like me who have been doing this for a long while ,we have grown use to the vernacular of treatment. But even then it takes a lot of knowledge to just get by. Why can’t things be just kept simple and so that you don’t need a degree to understand. A forum for Hcv dummy’s. There will always be people who like to know the ins and outs of a rats arse but the majority use simple speak and feel lost and hence don’t ask or post.
I think that Face book is actually a non social form of communication. People are so busy interacting with the use of the little gadgets that they forget to communicate in person. For me it may be a time to move on from that scene as it is not fulfilling any purpose other than filling in time without having to think. I don’t think I will totally leave it but I much prefer to chat in talk rooms and by e-mail. Apart from hundreds of kids in chat rooms these days there seems to be little adult and interesting discourse going on. Sad really.

Hcv the costs to a persons life ( thread closed)

2009-07-22T13:16:00.002+02:00

My home town,Cape Town South Africa.Do you wonder why I love it here?

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When it comes to living your daily life with Hep certain things do get noticed although it may not be recognised at the time by you.Patience becomes very thin , short term memory does get affected. It seems that within minutes you can run through a whole gamut of emotions. Anger,sadness, being very alone, hate and viciousness. With the continuous contributions of the physical effects of having the active virus working 24/7 it is no wonder that you become depressed and exhausted. It is a trial trying to maintain composure, energy levels, hydration, exercise.Remembering to eat even if you have no appetite. In my case the constant itching and low grade headache. The pins and needles in the arms and legs, the dry eyes and gummy mouth. That strong metallic taste ever present. To remain constantly motivated is like a curse. You just want to give up , crawl off some where quiet and be left alone in your misery. But family , work and various other responsibilities have to be faced. It isn’t easy. With most illnesses the people in your every day environment expect that treatment will make you better and that in a short time all will be well. They have no conception of the slowness of anything when related to Hep c. Treatments are long and that any result will take quite often years to be fully realised. I myself on the most part don’t look well, but then again I don’t look sick either. Often the effort to maintain social relationships are too much to handle and slowly over time they drop away. You leave the active world and the only place left you have is the web forums. You actually become afraid to get involved with anything out side this little world you have retreated too. I find that a type of panic sets in if I have to do anything that is outside my immediate surrounds. I have become terrified of my work environment, insecure and unsure if what I am doing is up too scratch. I have lost my confidence. Things seem to be going so fast and so much is going on and I just cannot keep up or take it all in at once. Reading the threads and personal blogs of people on forums and webs I find that it is not unique to me. I and others have become virtual people who have only a virtual world for succour.

Hcv the cost to a persons life post 4

2009-07-21T10:10:00.001+02:00

There comes a question of pain.Very few of us can go through life without experiencing pain in one form or another. My health problems apart from the Hcv infection has made pain almost a constant companion. I cannot say that the infection has made things worse in that regards, but I will say it has made it harder to manage and handle any pain. Have things grown in severity? I think not. I probably have too much time these days to dwell on it , hence I guess I have a greater awareness that things hurt.

The problem comes in how you manage pain. For the most part these days I pop a sleeping tablet and sleep through it. For me that is the lesser of the two evils. I have only recently been taking something for sleep, so my body has not grown used to the medications and hence low doses help. Not one to have abused pain medication, but due too a life time of having taken increasingly stronger tablets and drugs, pain meds potency has decreased with time. The increasing stronger and higher doses of very active and damaging pain meds are not good too my system. I guess my body has become so used to various legal opiates that the relief from pain is growing less with use. So these days I restrict myself to when I use them,the amount and strength of the drugs that I need to get relief would probably seriously hurt most individuals. It has to be a case of I’d rather cut off that which hurts than go through that pain before I will take them.
There are things that I do find that help in their own small ways. Meditation where I put myself in to a place which is calming and apart from what is around me. Breathing exercises which help oxygenate and release endorphins. Massage which relaxes and stimulates the muscles increasing blood flow and removing toxins from the flesh. Warm baths, not hot, which relaxes and releases the tensions of painful parts. I’ve tried self hypnosis and acupuncture as well. The acupuncture isn’t for me though. I tend to have small bleeds at the sites afterwards, it isn’t anything to remark on but I don’t want to push my luck.(having a bleeding disorder makes it a bit chancy).

The thing is , we are all different, we all feel pain in different ways and in vastly different amounts. There is no need to suffer unnecessarily ,find what works for you and use it.

Pain wasn’t what made me push the doctors for the cause of what I was feeling. Having lived with and worked with pain it wasn’t that which drove me to chase a solution. What it was that led to my final diagnosis was something else. One was, I wasn’t happy with being diagnosed with having an enlarged heart. I didn’t believe that the increase in blood pressure was from my life style. working too long a day and work stress. Two, I didn’t believe that the cause of my continuous lack of energy and the reduction in drive was from being pre-diabetic. I ate far too healthily for that to be the reason. Three, the brown staining on my legs wasn’t due too my blood disorder, if it was why had it taken 40 years to show? Having been around a few people that had liver problems I knew that the legs and feet looked like theirs. Four, I picked up weight too easily. I used to struggle with maintaining my weight when I was younger. Haemophiliacs need to keep a little weight on to cushion the bony joints when knocked. But I picked up 20 kg in weight in six months and I was dieting to keep the weight off.Because of a diagnosis by one of the top cardiologists everything was disregarded by the specialists. I was suffering from hyper tension and an enlarged heart and was a type 2 diabetic. All of which was proved to be wrong later. As I have said previously in other posts it was luck that the real cause was found. At that time I had Hbv and a low viral count positive for Hcv. I still wonder if a true diagnosis had been made would I be suffering from as much liver damage that I have subsequently incurred. Well that is in the past and cannot be changed, but I would suggest that if you are not happy with a diagnosis that you push as far as you can even if the primary diagnosis is correct. You never know.

Hcv the cost to a persons life post 3

2009-07-19T13:55:00.001+02:00

I have been a chronic insomniac for the greatest part of my life. It never caused a problem till lately. Even though I only average 2-3 hours a night actually sleeping , in the past it was enough and I didn’t feel any affects from such a short sleep period. But as the viral affects increased I find that the sleep I do have isn’t that satisfying restful sleep. I wake with a headache and continuously fidget all night. I’ve tried all sorts of sleep inducing methods, from not watching TV. two hours prior to sleep, to sleeping pills. Nothing really works, sleeping pills do knock you out but it takes hours to feel human again after. From warm baths and drinks too white noise and meditation ,I tried it all. There is nothing worse than trying to develop a sleep pattern when you are tired in body but become mentally hyper active as soon as you close your eyes.Ah well one day it will turn around I am sure.

What has happened in the last eight or so years is one thing that I personally find the most troublesome. The loss in co-ordination and sensitivity of my feet and hands. Cramps are frequent and painful. Hand. leg and arm spasms occur on a regular basis. Some are caused by a metabolite imbalance. As my liver deteriorates it becomes harder to take up the vitamins and minerals necessary. Some are caused by my lymph glands, which at the moment go out of balance with my bodies wants and needs.I have been the to various neurological specialists and under taken various tests but there is yet to be a diagnosis of what is causing things like the deadness of my feet, hand tremors and hand spasms. You read all sorts of possible reasons when you read up on web sites but are left still clueless afterwards. I hope that it is only a temporary condition and that when I finally get on top of this virus and beat it ,that it will all go away. I firmly believe and want too beat the crap out of this bug it is just a matter of timing and luck. I really need to do this soon , as it is affecting my ability to work, which affects my income . This then severely restricts my ability to pay for treatments. Financial problems cause more stress. Which affects my sleeping even more. This reduces my bodies capacity to heal itself and ……it is just a continuous circle so I will not comment further.

Hcv the cost to a persons life.Post 2

2009-07-12T11:24:00.001+02:00

At first when I found out that I had the active virus it came as no great surprise. What did come as a surprise was that I was also infected with Hep B. The thought strikes me that I haven’t been checked for a possible viral loading for it in the last 6 years. I have assumed that any possible further affect of the B virus was negated by showing a negative viral load and the presence of antibodies. I assumed that I had now acquired immunity from further infection from the B virus. Maybe I am wrong and will have to look into it. You can become to much of a home expert of sorts and that would be a mistake.

My own experience when being treated by specialists for my hep c infection is just that. They are specialists in their field, haematologists treat the viral affects on my blood and my gastroenterologist treats the affects on my liver and related organs. As long as the treatment is affecting or possibly affecting that field of my well being related to their speciality they are only interested in that portion. The sides of the treatment or the virus which doesn’t drop into their speciality has no interest for them if it doesn’t come into their scope. So the majority of the side affects are monitored by my Gp. General medicine is basically that , knowledge tends to be knowing of but not knowing about specifically. So it falls into a best guess scenario. There seems to be no correlation of the many parts related to treatments of, and the affects from, the hep c virus. Over the years I have read many research papers of different thoughts as far as my limited understanding allows me. But I have yet to come across anything that approaches the viral impact and it’s treatment on the sufferer as a complete unit.( I am sorry I cannot think of the word at the moment) I feel that when it comes to treatments and management it should be a holistic( you see it comes!!). Best comparison I can make is what is known as the Butterfly affect. Where the flapping of a butterflies wing can affect the weather system of a place on the other side of the world. In us too ,our whole inner world is affected by a disturbance no matter how insignificant to not be noticeable but could have later ,greater, repercussions. As a person you get to a stage where you are not sure if you are showing paranoia by mentioning ,lets say, an itchy spot to your doctor, or stupidity by something happening and preventing it if you had mentioned it earlier. I guess on the whole we become hypochondriacs. So busy checking for possible problems that we develop paranoia about our health. I say if you got an itch ,scratch it. If you feel you have a medical problem mention it. Too hell with paranoia and hypochondria.
There is lots more too talk about, such as sleeping problems and muscle weakness ,so I will carry on with this thread in further posts.

Hcv the cost to a persons life.

2009-07-05T10:13:00.001+02:00

There are certain realities of having and suffering from the Hep C Virus. These are above and beyond the facts of the disease. The treatment and side affects of the treatment drugs are often discussed and how to get over the whole process of clearing it from the body.
Rarely discussed are the long term social and welfare aspects of having this illness, so I thought I’d say a few words on the matter.

The virus long before it becomes active has an affect. Socially and physically on a person. For some it starts with a routine blood test and a positive report for anti-bodies. For others it is from an increasing awareness that there is something wrong with you, something that doesn’t feel quite right. But yet at the time isn’t a thing to worry a doctor about , so you don’t till much later.
For the majority of us we are living at a time that has been mapped out for us by our environment, work friendships and leisure practices. We plan for a future in which we are given a general expectation of living long enough to achieve the goals we set. The first hardship comes along when you receive a notification that you have Hcv anti-bodies. Generally this is delivered as a shock report from a doctor, who then tells you that you have a potentially life ending virus. Doctors in general do not have the compassion that a person needs at that time. It is not their fault , one must become hardened over time by having to tell people that they are in a state of health that may lead to death. That news in itself is a shock to a person. Yet as you absorb this news you are told that there is potentially life saving treatments that can maybe prevent this. So in one fell swoop you are given bad news and hope. This takes some getting used too. Your first thought is finding information about and obtaining this treatment. But I must say the problem doesn’t start there.

This virus could have been present for years and was slowly at work injuring your body. It’s slowness in itself makes it not noticeable at first. During this time it decreases your ability to work, drains energy so that you become less physical. Tired you become less sociable and friendships become more strained. The employers begin to notice a drop in production and more frequent days being off sick and their regard for you as an employee starts to drop off. Slowly your earning potential reduces, and as it is so slow you adjust your life style ever down. But eventually there comes a time that your job becomes in jeopardy. Already your finances are strained as your earnings reduce. This is often when a doctors services and the bad news occurs. But already you are in a place not to be envied. The possibility of loosing your job has already come into your thoughts. Ill, with not a clue if you are going to get well and the chances of finding a reasonable paying job all pray on the mind. Depression starts to set in, where do you go from here , how can you support your family. Each day brings the sickness more to the fore. So the average person sits worrying, the weight of the future crowding down on them. So already the affects of this virus has had serious repercussions. It puts a significant strain on the relationships in a family. Although contractible the illness isn’t contagious. But that isn’t understood by most people.So you worry, do you tell people in your sphere or do you keep quiet. If you do tell ,some people then shun you and in their fear and not understanding, tell others and a sense of isolation sets in.

You then start to think on if there has been a chance that you have passed the virus on and that plays with your mind. Eventually you find out about the Hep forums. They have their place but it is still not fulfilling the need inside. Loneliness is still part of your life.

Finances themselves are a major problem. With a long drawn out illness and an expensive, in a lot of ways ,treatment. Months are spent worrying about getting on treatment, will you have enough finance to do the treatment and will you be able to earn enough. Then it is actually being on treatment, side affects and organ damage being distinct possibilities ,which try as you might you cannot get off of your every day thoughts. This is the loneliest time .Your self worth is questioned with the need to blame someone for what is happening and having no outlet anger and fear build up. It affects who you are and drives more people away. Unsure of yourself you retreat into your own little space. you never get clear of this virus. Even if the treatment is successful for the rest of your time it remains part of you , the worry of what if.

There is so much more to say so I shall a little later.

Early days ,a memory from child hood

2009-06-23T19:45:00.001+02:00

As I may have mentioned before in between moves from country to country as a child, there were times when my family stayed a few months in England while things were being organised. I have vivid memories of one such period. I wasn’t quite 3 years old ,my mother was heavily pregnant with my youngest brother. I haven’t a memory of my middle brother but I know he wasn’t more than a few months old. So it was 1958-59 late Autumn early winter.

We were staying a few weeks at my father’s mother. I have strong memories of her back garden. It was in two sections.The front part was a piece of lawn and the washing lines. Then there was a small brick wall, only a few bricks high. The rear garden was behind this retaining wall. There was a row of gooseberry bushes. Then a narrow concrete path which led to an Anderson shelter, which was the tool shed and potato store.One corner in the garden had a compost heap and a rhubarb shrub. A wire chicken cage and run , also an upturned box which was the home of two small white ducks.( Ducks were Christmas lunch) The ducks would scratch around for worms and slugs and all sorts of goodies in the garden , keeping the pests down. Then there was the vegetable bed, always one long trench left dug in which compost not quite fully rotted lay.Just in front of that was the pea and bean canes. I was forever pulling up the baby carrots and getting spanked for it. I don’t know but it seemed like fun at the time. The garden was enclosed by a fence which a hedge grew through. There was berries in the hedge which I used to pick and eat but I can’t remember what they were, probably poisonous which would explain a lot of things . A wooden back gate led to a lane where the bins were kept and too the garage . There used to be an enamel bin on the gate marked Swill this was collected by the swill man and fed to pigs . I know it was marked swill because years later it was still there , no longer used but still hanging rusted and holed the next time I returned. When I was older it seemed such a small place ,but then in those days it felt like a huge and a wild place.

The war was a recent memory for the adults, there was still rationing for certain goods. I remember the eggs with the little lion printed on them. Wagon wheels, chocolate covering a biscuit base with marsh mellow filling. The milky bar kid wore a cowboy hat and glasses. All the clothes were thick and heavy , dark and functional. The TV was a small little glass screen in a huge wooden box and used to hum when switched on. The picture was grainy and the sound very distant. I used to spend what seemed like hours watching the little dot get smaller and darker for what seemed like hours, till with an audible plink it was gone. I can remember I was always in caudroy dungarees , bib and braces always done up and I had a hat which was fastened under the chin and had a peak brim,also little rubber boots. Sugar puffs were the rage for kids at the time and I remember the little train that decorated the cereal box, puffing Billy.If enough box lids were collected and sent in you got a little rubber toy. I had one, though I don’t think I ever had the puffs. I think that ,as was usual in those days ,it was from coupon exchange which all families were involved in back then. If some one wanted something they swapped coupons till they had what they wanted. I can remember my parents collecting cigarette coupons which they got a radio with but that was later. What I do really remember was the little bottles of fresh cows milk. Ice cold and with an inch of yellow cream on top, that was always what I didn’t get. The cream was for either home made butter or used for making cakes and was collected till there was sufficient for the need. I also remember the tea bags after use being hung out to dry, they were used several times each brew getting progressively weaker. I hated tea from early child hood. I can remember my mum going to the butcher with a little book where she was allowed with the necessary coupon and some cash to purchase meat. I got hold of one of the books once when I was alone and cut the pages up into stars and bits. I got a hell of a hiding and had many tears shed about it. But my favourite of all treats was my daily Farley’s Rusk.You couldn’t get them overseas for some reason,eventually years later I had some again and they tasted awful.
I was always up to something and I don’t think any escaped prisoner of war was more dedicated at escaping than me. I had a tricycle which was tiny and I used to get it out of the garden and I was gone. Down to the train tracks ,watching the trains. Clouds of steam and smoke, the rattle of the train as it flew pass. The bitter smell of the ash and soot, with the train stoker or driver yelling at me to stay away from the line. I never did, but used to chase as fast as I could on my little bike. Must of scared the pants of any adult in the vicinity, but I was a child and fear wasn’t part of life yet.

I remember the rag and bone man who would turn up once a month or so. The time between visits I forget but what I do remember was that for a few old clothes or a broken pot or two or several glass bottles a child or adult could pick a small item in exchange. I still have a yoyo which I have never learned to use properly from back then. Minus the string, it is a memory that I will keep , my kids wanted it once but I have so little left from those days. Memories, the more you remember back the more that comes to the fore. Just writing this I can remember the faces from then but not the names. Like pictures from an old forgotten album , who were these people and what were they in my life ?

Nattering on

2009-06-19T20:33:00.001+02:00

Back in the mid eighties I had reached a stage when a few decisions had to be made. Non of them easy, the biggest one was taken out of my hands, that of having my pelvis and right leg repaired. My marriage to my ex- wife needed to be sorted and what would I do for the future.

I had been managing a manufacturing company for a couple of years prior to having the necessary surgery. I lost that job. It was expected ,but luckily I had as usual a few pennies put away so could cope for a while. The septicaemia I contracted during the operation wasn’t expected, neither was the encephalitis nor the 5 months in hospital. The brain swelling had caused some loss of brain function and I had to learn to walk again. It took a while to get some of my memories sorted out and even to this day my short term memory isn’t that good. I cannot remember names and numbers very well soon after learning them, although weeks , sometimes months later I do. Strange how the brain works.

The most pressing thing at the time was to dissolve my marriage. I hadn’t seen my ex for a while and we were strangers now.I wasn’t in a relationship, but it was senseless staying married when 12 000km and 3 years separated us. The divorce was quick, not cheap in legal costs but I don’t think there was any animosity felt by either one of us. I hope that she has had a wonderful life and has achieved what she wants from it. For myself, I have had a good one so far, I think it has given me pleasure and I have no regrets. I have all that I need , a loving wife, two healthy children and a home of my own. Maybe I should have been more of an achiever, but then again what more could a person want than to have all that you really need to feel pleasantly comfortable.

Strangely as I meander through my life I have found that when things seem tough that something has always come around and was the solution .It has always been that way. I cannot really complain about the last few years of illness. When it looked like my walking days were over a few years ago I found a surgeon that had a new operation that might fix me. Alright, I died a couple of times on the table but only the good die young. I guess being bad has it’s points. It was a painful and often very uncomfortable period of my life. But looking back I sailed through okay.

Even haemophilia hasn’t been so bad, I will admit when I was young it was, but over the years with the different medications it has less repercussions. Umm when I’m actively bleeding and going through hellish pain I might say otherwise on another day.

Even the hepatitis hasn’t been more than I could handle. Still carrying a very active form of it and being given only a couple of years life expectancy 7 years ago I am still around.

A few unpleasant years of failed treatments (117 weeks) hasn’t been a pleasure. But it has been amazing that I have managed to cope financially the last 8 years with only a little more than a years normal income during that time. I even still have a job of sorts, well the last time I checked I did. Not well enough to care about whether I have or have not a job now days.
So how is it with me. I’m a little subdued, very tired all the time. My skin itches continuously.My stomach swells up like a Christmas balloon on the occasional days. Joints hurt, eyesight failing. Gaining weight but not eating. Legs and hands are attached to someone else's body, so it seems. I just feel when it hurts. I cannot sleep at all with out sleeping pills, constant reflux, headaches and my balance is not so good. Hair has got much thicker than before all the drugs. Hooray for hair. personally I don’t care if I was bald. On a good day I can do the washing, even hang it out, lots of washing when you live in a home full of women. I still cook when I can , though eating isn’t high on my list of too do’s.I can sit for about an hour then I must stand, sitting is very uncomfortable for me , as is laying for any length of time. My liver is slowly packing in and I guess my kidney is high up on the list as well. My urine is very dark and stinks and any bowl movement is reminiscent of a three month old babies. Same colour , odour and consistency. I guess I am changing my race as well, from the knees down I am African, stomach very European and shoulders upwards Asian. Yes I am becoming a chameleon. Got the scaly skin to prove it.

So what is my plan for the future. Well visiting the Uk is still high on the list, although the finances took a wallop with Tracy’s recent operations. Sorting out our passports has been a bit of a up hill battle. I now have to get my two girls sorted on their way in life. I don’t know how much a kick up the arse or leaving them to their own devices is necessary. They can’t make up their minds what they want to do, Tracy says let them decide, I’m more for a good boot start. They will hate me for it, but then that is what a parents job is at this age, I can put up with a little hate as long as they gain a good future.

All in all, I am managing, things could be better , they could be worse. But I still smile and have a lot of amusement for life left. All is not lost. Complaining gets you no where. Self pity achieves nothing. So I am just getting on with living or dieing as each takes it’s look at me.

Just a natter.

2009-06-11T22:06:00.001+02:00

Friendship isn't about who you have known the longest.
...but about who came and never left your side.

My world is one of tiredness. I am tired all the time. Very little energy is left for doing the most basic of chores. I have been very fortunate that my progression with this disease has been a slow one. It seems though that I have finally caught up with it and everything from thinking to even eating is a slow journey. You would think that ,as inactivity sets in, that the hours passing would slow down as well. Not so, they flow ever faster, galloping off and from waking ,too sleep, pass with incredible swiftness. Patience was never one of my strong suites. It is incredibly frustrating trying to catch up continually, what was a job of only a few minutes can now take the whole day. Cutting my lawn usually takes two days now instead of an afternoon. Then it takes a few days to recover. I love cooking but lately I cannot find any passion in it. I don’t cook for myself but for the delight to find the enjoyment in others for what I cook. I guess it is a matter of timing and my timing has flown out the door. Food needs to have time spent enjoying it and maybe my present pace of life is too slow for those around me. To sit at the table and to chat is a big part of a meal and it seems that all around me are into much of a rush. My children are in and then out , very busy social lives. I miss that. Tracy, my wife, is now so involved in her projects, her studies and her different groups that apart from bed times I hardly get to spend time with her. I suppose the wheel has turned, it used to be that I was always working, either with my job or some thing that had to be done on the house that I never had time to do anything but work and sleep. But then again if I never put the hours in when I was younger I dread to think how I would have had the savings to live the last few years.
I haven’t been on line much lately, anger management on my part.It is so frustrating to have only a land line connection and having to wait long times to get anything done. Even worse is after spending hours downloading something to have the connection dropped and the package lost and not restorable from where it was dropped. Also I have had a few little challenging health problems that made sitting for long periods a challenge. One day I will get a laptop, when finances allow it. So for now it is pc/desktop for me. But I have got broadband connectivity now,eventually when I can motivate my ISP to actually sort out my modem, which they forgot to order. I will not feel so frustrated and slow. It is bad enough being a three fingered typist who can’t spell than having to deal with the inadequacies of South African service techniques. The world football cup should be lots of fun, I guess the world will get used to recorded live soccer, as at the moment technically we have the equipment but the operators are clueless. Ah well African time…..

By the way, my car needs to be shot. Old and almost in as bad a state of health as I am ,I need to fix it. That should be fun, I can repair cars but hate it with a passion. With my limitations of movement and balance, it is a ballet between me, in a fit of anger,the tools that I need just out of reach ,smashing the parts in frustration or taking a moment cursing in as many languages I can muster before I fix it. Nothing better than stripping something down and then finding out that although the part numbers corresponded they don’t belong to the year and model. I guess that is what you get when your car is made in South Africa but the parts are from all round the world and from separate suppliers.Standard but unique to this country. I wonder how the people around the world manage with their cars assembled here.

Well it is almost mid winter here, the sun will be heading south again soon. We have had some moderate rains lately which is very nice. It hasn’t been cold yet I think 15c is the lowest in Cape town so far. We should have had some frosts by now, the birds and plants are slightly confused, we still have swallows that never migrated about. I need to get my finger out of my cavity and do something but as I said before I am just too tired. lol.

Just an illusion

2009-06-04T19:44:00.001+02:00

What have you seen as you spin around us, controlling the tides giving life it’s rhythm and purpose. Is it just a chance accident that fertility and life is governed by the same clock which is set by you. What if we are truly unique. That a chance collection of atoms and molecules happened to be at the right place at the right time. Life. Maybe beyond this planet there is just non life. Things that come into existence,pass through their time of being and leave unremarked.

Is Earth the biblical Eden?Created so that from this small spot something wonderful can move on and expand outwards, giving a purpose to that which is. What would be the point in it all without life. But life in itself would also be meaningless if it wasn’t for realisation. Would there ever be the need to change anything to begin with . What makes things real? The potential for reality always exists because of awareness. Without awareness nothing is real.In me if I am unaware of something it has no reality for me.

The virus I carry ,has it an awareness of me ? Does it have a realisation that it is part of me. It has the potentiality to become more than a virus, but in reality it has no awareness of my being. I am it’s world, which in it’s lack of awareness it is destroying. It’s life depends on my living , when I return back to the atoms and molecules that I am made from so does it. I have the awareness that on this Earth I am just one of many viral types, in time will we be able to move out beyond this home world. Or will we perish as we drive the life from it and it too become’s as the moon. Some thing that had the potentiality to be more ,but in reality never having the realisation of what could be , burning up what is. If that is so what was the point?

You cannot capture beauty, it is ethereal and cannot be but glimpsed. Held for an instant in the minds eye and fades away. It never remains the same. For if you can hold it and capture it, all the imperfections will slowly come into focus. That instant of beauty will be but a memory of the moment beyond your grasp. Savour the instant and have a beautiful life all of you.

Hcv and Me

2009-05-18T20:50:00.001+02:00

I must apologise for my last thread. It is just that there are times when the unfairness of it all gets to me. When I was a child these times were looked at as being the golden years of the future. When poverty would be eradicated and the world would be a more sociable and friendly environment. If it has become that then I am afraid that society set it’s goalposts far to low. There has been a series of events in my personal life that I can not talk about. These have dropped my spirit to an all time low.

In recent weeks I have been searching for a forum or even a discussion centre which was more accessible to me here in South Africa. I haven’t found one on line in Africa ,let alone down here in the so called progressive South. You may ask then why don’t you set one up yourself. It isn’t for the lack of time, I have plenty of empty hours. I confess that I do not have the knowledge and the necessary computer literacy to do so. Neither have I the funds to make it work. Local information is scarce and spare in facts, facilities and availability of treatments. Abuse of others from computer virus, spamming and Trojan invasions is rife. I would not have a clue how to prevent any of that. So I feel very alone down here, yet I know that there are more than a few people with Hepatitis C living South of the Sahara. Africa , often used as the testing station of drugs and procedures which would not be be permissible in the western hemisphere, is financially better left in the dark by the drug companies. Develop the drugs, test them on the populations and then get out. There is little money to be made from actually making them affordable here.

A truth about me. For a few months I have been in hiding. I have slowly , progressively ,got weaker and sicker from the virus. I haven’t been working, I should at least make the attempt to return to work. But it is a catch 22 situation. Inside myself I know I am no longer capable of exertion for more than a few minutes at a time. It takes me longer to recover from those few minutes than the actual time I can put in. By not going into work I can maintain the belief that I have still got a job. The company I am with are actually very good with this, they haven’t sacked me, but then again it costs them nothing. Medical insurance, pensions and labour council fees are coming directly from my own funds. No income just expenses. When I finally do return to work I know that the dream will end. The full realisation will hit me and I will no longer be able to kid myself that I can function in the normal world. After a life time of battling through pain and all the other difficulties haemophilia has given me I will succumb to a little almost invisible microscopic bug.

I would like to say something about my wife, Tracy. We have been together for more than a few years. Living with me has been tough on her, she has a strength of character which I doubt many women have. She has shared all these years of having to be wife, mother and nurse for me and my children. There has been many occasions where helplessly she has been with me when I have been in extreme pain. Having to be there and go through the suffering, not being able to affect anything but just being there. Having to live for months at a time with the stench of fresh blood, stale blood, cleaning up the mess when I am unable to do anything. Help set up drips and giving me injections when I have been unable to do so. The sleepless nights when I have been close to death from haemorrhaging. Let alone the last few years which have been some of the toughest. I underwent two major surgeries and had to be resuscitated twice on the last one, three years ago. It was a long hard time to recuperate from that for me. Especially as I was been having treatments for my Hep infection. Through all that she has been my support and my love. Love does exist. She shows it every day and I marvel that I was fortunate to have found it in her. I haven’t got a clue what she sees in me but what ever it is I hope that I will never loose it. She deserves more, a life which isn’t so stressful and full of worry. She still believes in me, even when for myself ,I have lost that belief. Young love is exciting and full of promise, but I can tell you from experience old love is a harmony, a well known and comforting song. One where the words are not important but the tune is one that is vibrant ,comforting and full of memories. I think I will end now and go hum that tune.

May 16

2009-05-16T11:24:00.001+02:00

I guess it may be of some interest to others how the state of my health is due to the Hepatitis infection I carry. Well I cannot claim to be enjoying my days at the moment. The dwell time between a thought and an action is getting increasingly longer. The old brain cells are tired and to maintain a clarity and progression in a thought line is probably nearly non existent. Any advantage I might have gained over the virus by doing my treatments is no longer obvious or even noticeable. I guess my still being alive is what it was all about in the first place and that has been achieved. Most of the joints now are stiff and quite painful. My right shoulder is nearly non functional, as just lifting it is agony,it feels like it comes out of joint . The feeling of nausea and a fullness of the stomach is ever present. My eye sight is failing . I now have a continuous headache, which I guess is due to a insufficiency of some essential metabolic salts. My skin is now the texture of shark skin and no matter how much I shower I kick up a dust storm of skin scales where ever I go. The sense of touch in my hands is that of feeling like I am wearing thick rubber gloves. The feet are in a bad way, they are almost an alien part of me . A dark brown to purple hue now colours them fully. To look at they appear almost mummified. The toe nails are thick and crumbly, misshaped and unbelievably thick. I had scrapings done and had it tested but there is no bacterial reason for what is going on, so no recommendations by my doctor. All in all it is just a part of a slow degeneration. Physically, mentally and emotionally tired I feel a little world weary at the moment. But I can’t complain, there are many who would wish to be as healthy as I am at present even though I am not feeling the part personally. If I had to have a moan it would be that having the side affects of Hcv is bad enough and the day has many trials. It is for the most part just about manageable, but the added stress over and on top of it of finding the financial where withal to lead a near normal life is spirit breaking. I often wonder when it comes to salaries how the multi million sums gained by some peoples can be justified when others who are more productive barely scrape a living. How for example is the 5 week effort of an actor be worth tens of millions , when as a functional human being this actor would be rated as a pillock and yet the so called blue collar jobs are rated so low as that barely a living wage and more often not even that is earned. In my own words a shit shoveler has more worth to society at a practical and functional level than any star,politician, entertainer etc. A shoveler’s job is more important so shouldn’t the income be more. Any how I am loosing the pluck for any more today so I will just end.

Through my eyes

2009-05-07T20:21:00.001+02:00

Recently I have been in conversation with a lady on one of the forums I am a member of. Lightly dwelling on differences in culture and dwelling slightly the different systems of governance between administrations in our separate countries. I hope we will continue as I enjoy discourse about others perceptions and life styles. I think that I would like to give my perspective of Africa, seen through the eyes of an African who is white.

The greatest thing about Africa is the sense of space you have. I don’t mean in the urban surrounds ,but away from the cities. Expanses of bush and scrub,desert and almost desert,the dry heat of the central plains and the moist dampness of the lower coastal areas.The land changes slowly as you move on. Gone are the vast herds of wild animals that used to roam freely. Wire and fencing breaking up the expanses. It is not as if the fenced in lands are productive farm lands ,but just bush and scrub which has an owner, who may never ever make use of that land. But it is his and so must be marked out and jealously guarded. Wild Africa does exist, though it gets increasingly harder to find. To me it seems that everything alive or dead is owned, everything that moves or fixed belongs and is owned in some sense by some one.

I can only really talk about Southern Africa because this is the area that I have experienced personally. I have made very fleeting visits to other parts but only really stop over's.

The perception that outsiders have of this land has been swayed a lot by what ever the popular news of the day dictates. It is hard place to live. You cannot compare what is here with what is else where. Colonialism is blamed for the Africa we have today . I truly cannot blame that. It is of course a factor ,but for myself I can't see it as having actually held up the development of Africa. The whole of Africa south of the Sahara has been colonised , decolonised time and time again by different African peoples and those from outside. If it holds true that man first came into being in Africa and migrated else where over the eons ,then we are all African by decent ,so colour of one’s skin should be no way of differentiating one person as being African and another not.

Neither should religious beliefs be the way, animalist,Jewish Christian , Muslim it makes no difference . You are born into a belief system it is not what makes you who you are, but it can govern who you will be and your lifestyle. I am white and I am African,I was born here and for many generations back my ancestors were too. Africa nourished us and gave us a home ,I am native to this soil. For without it I would not have come into being. I am an inhabitant of this world, the planet earth. So I am part of all life that is the make up of this little ball in the universe.

The king has new clothes

2009-05-07T20:20:00.001+02:00

We have a new president in South Africa, the ruling party for good or bad, is the African National Congress. My view of the president is not a happy one. I don’t have a see a bright future or that there will be a change for the better in governance. President Zuma, to me ,as an ordinary white African,seems an already corrupt individual .Who through delaying tactics , promises and threats made too his cronies in power, managed to get out of the reach of the law by his manipulations. Likewise ,certain people should not have been allowed to be members of parliament . Because of the current laws that rule who qualifies to be a member. For one ,Winnie Mandela, already convicted of crimes and is very likely directly involved in criminal activities in the past but was never brought to book for them. That is my view , maybe I am mistaken.
President of South Africa Mr Zuma

A fixed term president we have got ,but who in his own eyes is a king. Not a figure head of government, but the ruler of this land’s people. A Robert Mugabe in the making? What do I feel is wrong with South Africa? Well I believe that the health and wealth of a state is governed by it’s belly. The encouraged urbanisation of the rural peoples by the ANC, to increase the voting numbers of city areas more in their favour, is gradually going to work against them.Less food is being grown by those who will be consuming it. An urban population has to be fed , housed , given the functioning needed infrastructures to allow them to develop and succeed. Living in cities needs a certain type of sophistication of having a marketable skill in order to earn money. That skill must be in demand and the wages sufficient to provide for an individual and his family. Taking a person from farmlands ,where even though he may not receive a good salary but can feed and cloth his family and put a roof over their head and provide for a future. Then encourage him to into a city with promises of wealth , where apart from the labour of his back and in competition with many others he has no skill. Where there is a housing shortage, a decreasing chance of finding a living wage, an over stressed and under funded city infra structure . This is asking for trouble. Unable to grow or provide food , or a place to live , these people are at risk.
The shear numbers of people flocking to the cities is forcing shortages. Food prices are increasing as the urban load increases demand . The salaries offered is reduced as labour supply exceeds demand vastly. Over crowded, damp filthy living conditions are causing illness. The already overstretched public health system is imploding due to high administration costs, lack of qualified health workers. Due to spending and not planning for the future the national power grid is nearly in melt down. It is alright providing for electrification for all but it needs to be planned and paid for by all. It was never free and was always behind demand for supply. The sewerage and water system is also almost beyond recovery. You can only force so much effluent down a pipe in a day and those pipes need to be maintained and replaced. They are not. New built up areas are just tacked onto the existing system and new water supplies are only an after thought as the dams run dry. Because the cities are doubling in size every ten years, the road systems are inefficient and out of date, maintenance is not done properly and the roads are eroded by ever increasing traffic.Public transport is often non existent and already overloaded.

Education is also in distress here. There are 11 officially recognised languages used in South Africa. More often than not pupils are not taught in their home languages. Partially due to insufficient translated text books in subjects. Non qualified teachers, languages that have no comparable native words or insufficient technical words. Also because English is considered the language of commerce and of educational excellence ,children are taught in English. Not spoken by their parents they become strangers of language in their own homes. Having to learn from a book, ideas and concepts beyond the education of their elders. They receive no help.

This lowers the speed of learning , but the schools cannot afford to go at a progressively slower pace.The only solution that has been found to allow these pupils to move on further through education is to lower the exam standard. To make higher education and universities open to them standards of entrance for the previously disadvantaged is lowered.

This forms a vicious circle where increasingly under educated people are teaching or being the instructors of those coming after them. This is not the case for all Africans, as in every people there are some bright especially talented individuals who will unfairly be pulled down by the others.

For all it’s faults the Bantu administration education system worked. The qualifications were regarded as the same as those of the whites in the apartheid structure . Under funded ,poorly equipped it was ,but it could have been kept and brought into the modern system as a working functional entity. Modernised and properly equipped. It was after all the medium through which the present ruling elite were educated and went on to further education else where.
The one thing that will pull this country down is the we are owed mentality that pervades Africa. Blame is always laid on colonialism. The world owes Africa because of the past and that you don’t have to work to get anything. If it isn’t free and you want it it is alright to steal it, because everything is due to your being previously disadvantaged. If you wait and complain long enough you will be given it for nothing ,is what the young African of today has grown up to expect in South Africa.

Reflecting once again.

2009-05-04T19:35:00.001+02:00

I think that one of the hardest things to do is find your place in life. That comfort zone , where all that you do is in cruise mode.It is hard enough when you have your youth. When everything is a learning curve upwards. Where you are gaining experience and finding out who you are. But as you get older you take on responsibilities beyond that of just yourself. That is when any change has major repercussions. A planned for change will maybe be a little uncomfortable, but it is done with care and fore thought. But what happens when things get thrust upon you. Panic , confusion and chaos reigns supreme and it takes a lot of effort and sacrifice to get over.

Having Hcv is never a planned thing, illness you usually look at as being a temporary thing. Something that eventually you will recover from and then just carry on with your normal daily life.For a few fortunate's it has little affect on them . They catch the virus , it is detected early and they treat and are over it without any ill effects. For others it is like a dark cloud, casting it’s shadow to differing depths of darkness.

In a time of chaos it becomes increasingly harder to make provisions for the hardships that come about. You can only change a way of life to a certain limit, cut your budgets by a certain amount, make changes until a way of life becomes unrecognisable. Where do you go when things go on beyond that.Some go to the depths of despair, become self destroying with depression . Others lash out for the hurt they feel inside. The helpless hopelessness of their daily burden. When you can’t have the relief of blaming yourself , some one must be to blame. But who?
For me it was just one of the unfortunate things in life. Eventually it would be inevitable that I would catch some thing from my life saving treatments. It is with fortune that it wasn’t worse. I have in general had a good life. Hard and painful I will admit but I was and for the most part still am well satisfied with. I have reached that place with this illness where I have climbed to the top or the ridge, a foot either side of the peak. Having neither a way up nor rushing down the other side. ( It is hard work going up, I’ll leave going down to gravity). So perched on top of this point I have no choice to which way I will go. Down into the chasm to disappear for good or be whisked away by helicopter and rescued.

What I find difficult isn’t the balance of being on life’s precipice, but actually financing that balance. For the majority of my life I have been in engineering, I have run a factory with over 70 employees, I have gained experience of different processes and differing forms of engineering and have achieved a good standard of skill in those abilities.Those points in my life are not in question.Approaching my mid fifties it is harder to learn new skills and be competitive enough to make a living. At interviews more often than not you are looked at as being too qualified at the job and will not be happy with what’s offered.Or that you are to fixed in your ways an not flexible enough.How flexible do you need to be when Butt kissing? That aside, try looking to change your job when you have the health problems and the likelihood of them getting progressively worse.Being in a trade where cuts are routine and you are a haemophilic with Hcv. What do you do?
It is a dilemma for sure and I am yet to find away beyond it.

I have reached that stage in my life where although I have the ability to work and work well. I no longer have the strength to do so. My legs are weak , my muscles have no strength left. Dizziness my constant companion. Balance which has always been a difficulty,very hard to maintain. With the damage to my pelvis for years it has been a conscious effort on my part to maintain a standing position, not an unconscious and reactive one. My days are spent in discomfort, depression is always on the doorstep waiting to enter. Will I once again get passed this place I am in life or is this it. What I do know is my nature is not to despair, the days still have their warmth for me and it is not time for dusk , not yet anyway. Giving up or giving in sounds okay but really isn’t an option. Some how some way I will survive and there will be plenty of sunny moments to enjoy.

In memoriam

2009-05-03T14:50:00.001+02:00

Helen Ansell and her children
This week I lost a friend, not an old friend. But never the less a friend. Helen Ansell passed away quietly in a drug induced sleep. A young mother with two small children.

Helen I got to know from Hcv forums. Alone ,without a supporting family she was too battle and lose the fight.A quiet young lady, who wasn’t one at the time to have many friends who would support her. She came on line and found the friendship that she needed, someone to talk too and feel that she wasn’t alone and imagining what was happening around and too her. I can honestly say that I have never met someone ,who was always apologising for being sick and feeling that she was intruding, like her. I feel it only shows how lonely and lost she had become. But with all her fears and worries , and her personal struggle with her final illness she was always there to support and say a kind word to any that needed it. A mother till the end ,her greatest worry was for her children, only after sleepless nights and stress did she get to have some time with her babies before it grew to late to let them know how much she loved them. I am the better person for knowing her and will hold her friendship very dear and close to my heart.

I will miss our late night chats and the laughs we shared.
Goodnight Helen may what ever happens to the spirit after death be a pleasant journey and that you will find great joy and love where ever you are.

My time of year

2009-05-01T00:54:00.001+02:00

At last we have received our first winter rains . It is a time of renewal ,a chance to pause and freshen the world. This isn’t the end season of the cycle but the season of the start of new life. The fields are now burnt and scarified. For a few short weeks the rain will soak into the earth , the farmers will plough and greenness will erupt from the soil. I am sitting here listening to chirruping of the frogs , singing to their ladies, competing to be the one chosen. The birds are all ruffled and bedraggled ,perched huddled up in lines all waiting for the rain to ease off. The earth will be soft now and allsorts of bugs and worms wash to the surface. In a month’s time in the coldest part of winter the birds will start nesting and getting ready for their new broods. I love this time of year. I used to love wrapping up warm and taking a long slow walk along the beaches. Searching through the high water mark for the small treasures cast up by the winter storms. That acrid, foetid smell of the sea. My ears , nose and face burning from the cold. Today just walking around a heated shopping mall is a major excursion. The mind is willing but the old legs seem to get heavier and heavier with each step.

Today one of the local magazines ran an article on Natalie Cole, Hcv was mentioned ,almost in passing. More was made of her probability of having caught it in the 80’s from her drug habit.
Very little was actually mentioned about the disease except that you could carry it for 20 odd years and not have a sign you got it.

Hooray for this liberated time we live in. If you have Hcv you were probably a junkie and if you have Hiv you were into same sex relationships. What a load of bullshit. So if you are co-infected then you were a gay junkie. Rather no mention of this illness than the wrong type of exposure.The treatment for the illness is given as the cause of her failing kidneys. What about the fact that she has had the illness for all this time, her liver was under strain and she was probably suffering from diabetes 2 for a long while before. Changes in blood sugar levels are not uncommon with an unhealthy liver. The right diet can keep it under control if caught early enough. What doesn’t help is that she apparently had a punishing work regimen, you need to rest often with this illness , not when it suits you but when your body demands it.

On my previous post I talked about how I met my wife and how we got married. I forgot about our engagement, that was strange too. We had been together for a while , more or less living together. One day on a whim I asked if she would like me to buy her a ring as a token. Didn’t have the words out of my mouth when into the jewellery shop she almost ran. My wife and rings are a thing that has to be seen to be believed. I had to choose the ring for her , so I love small intricate rings, not big and flashy. The type that in themselves are a work of art and not just a thing to hang a stone in. Yes you guessed it, I was not so well off at the time, nearly choked when the price was mentioned. So after selling an arm a leg and a kidney I was almost handed the ring by the sales lady. Not a chance Tracy gave out a laugh grabbed the box and out ,off and into the ladies toilet to sort out her ring fingers. Those days I was still a bit of a shuffler as my legs were still giving me grief from after my operations. By the time I got to the second floor she was standing waiting for me by the stairs and I was engaged……………Don’t regret it and never will. That ring has long gone though, it was one of the things stolen when my home was burgled. Broke Tracy’s heart as she never usually took it off, just that she had a burn on her ring finger at that time and couldn’t wear it due to it rubbing. Got her another very similar ,but not as good ,it had to be the same style. Just goes to show it is the original of anything that is of importance , the value isn’t in it’s price but what was behind the sentiment and can never be replaced. By the way I went and bought a safe, hard to get at and if not opened correctly will do a bit of damage if you don’t know. So come on thief and make a return try I’m ready for you.

What was that?

2009-04-29T19:34:00.001+02:00

Fisherman’s Warf Cape Town.

It is the funny little twists in life that keep it interesting. How many of us have just missed something or come across the unbelievable by a matter of chance. On one occasion I had only just arrived in Durban, I had been in South Africa less than 24 hours when I was assaulted. My brother and I were taking a stroll along Durban's beach front , it was nearly dusk when I was leapt on from behind. I got a fright of my life and thumped the offender.

Who the hell was it that jumped me? I didn’t know this guy from Adam. Ready to give him a good hiding to nothing with my brother also trying to get a good look in, he said my name and my brothers. Unbelievably it was the brother of one of my best friends in England. The last time I saw him was about 4 years previous when I went to his wedding, shortly after he came to live
in South Africa . He saw me and recognised me. After spending a few days catching up I never saw him again until Easter this year 26 years later. I was shopping at my local mall and I walked straight into him in a lift. His sister in law lived two streets from me and he was down on his first trip to Cape Town. His son knew my youngest from chatting on Mixit , a social iphone site. Small world.

It is funny how things come about as well. Like how Tracy ,my wife, ended up marrying me. I never proposed but it happened.

How it came about was like this. I had to have an operation to repair my pelvis in 1984. I caught septicaemia and almost died and the result was I was in hospital for about 4 and a half months. I had encephalitis during my stay and had lost the ability to walk , and think consecutive thoughts. Still have troubles to this day with that. It took me two years to recover to the extent that I could work so I was unemployed and living off my savings. After the first year it wasn’t to bad as I did small jobs for loose change , slept more often on the beach and generally had a good time. A proper beach bum , black as a native and living from day to day.

Always food on the beach, in those days crayfish , muscles and inshore fish were in good supply and I was always partial to sea food. But of course this couldn’t last, eventually the money was getting tight and I was not going anywhere so had to go back to the mainstream of life and get back to working a nine to five regular job. There was little work in the late 80’s in Cape Town, in the engineering trade ,so I became a permanent temp for a while. My father had had his third stroke and had to more or less give up working so for a few weeks I helped out by running his garden service for him. I wasn’t doing much at the time so got a little pocket money. Tracy was the daughter of one of the family's who had their gardens taken care of by my father.

So I was their gardener. Tracy was a young school girl, just doing her matric exams. Guess she took a shine to me , which I found at the time a bit embarrassing. My fathers health finally collapsed and as I had just started to work back in Engineering full time I moved from Bellville ,where I stayed ,to a house in Kraaifontein. This made economic sense , houses were cheaper to rent in Kraaifontein and I couldn’t afford to support my parents if I stayed in Bellville. By that time Tracy had left school and after meeting my mother in a shop came round to visit regularly. I was seldom home generally working and going out when not. I was invited around for a braai(barbecue) one weekend to celebrate her step brothers engagement. From then on I would pop in for a visit once or twice a week . In those days I would enjoy a drink and would have a couple of shots there with her parents before going night clubbing. This went on for a few months, one night there was a party at their house and I was invited. It was a partners sort of get together and being not attached I went alone. Tracy was my partner that night at the party and we danced for most of the night. As it got later of course the more tipsy the guest became so just to pull my leg her mother asked in a loud voice what was my intentions too her daughter, as a laugh I said I was going to marry her and she would have a son in law almost her own age. I never asked Tracy ever to marry me and yet just over a year later we got married and we only ever went on two dates alone together. On the 30th of April we will have been married 22 years and I have never regretted it. Life is funny……… Most of my wedding pictures got destroyed in a flood ,what we saved , more than a few were stolen in a robbery amongst our personal goods that were taken. They steal anything in South Africa even your identity.

South Africa in April

2009-04-14T19:20:00.001+02:00

April, the autumn season in South Africa, the final flush of the summer. The days in the cape are still warm, The darkness of night gradually lengthening in time. The evenings are crisp with the promise of good winter rains. The farmers are now busy , burning the stubble and ploughing, a patch work of browns and yellows become the quilt of the country side.

This will also be a season of political change, false promises to be made to the masses, who in their need ,will forget the unfulfilled promises made by the present ruling regimen and on a racial /tribal basis cast a vote for what will be just another round of self enrichment for those in power.

Truly those who lead do not do so for the benefit of the people but to enhance their wealth and need for being raised up beyond themselves. Racialism is alive and well in South Africa. The country divided on ethnic lines. Law , education and health systems in tatters. People without leadership qualities, without the required social and technical skills being put in places of governance. In the race to be seen to be advancing the wealth of the nation, indiscriminate building projects are launched. Over financed , badly planned and poorly constructed. South Africa must be seen to be a robust and advanced community to other peoples of this world. Where in fact, as a nation, it is in an advance state of collapse .Where soon a time of political instability and the rule of violence will reign supreme. It saddens me, I have lived here through times of change , when repression was supposed to be eliminated, where personal freedoms were supposed to be espoused. All this came together like a charged battery ,but as the days grow on, the charge has dispersed and the country is slowly returning to the darkness which is Africa in the whole.

Even a fly is a jewel too the eye.

I finished my treatment for hepatitis exactly a year ago. I have become less abled as the year progressed. It started with the hope of finally attaining the defeat of the virus and now it is with a sense of defeat that the year has passed. It has become very obvious that I have no longer the strength of body left to me to keep in a position of being able to work. The mind is willing , the flesh is weak. The gradual progression of my illness has slowly taken it’s toll. I find it exhausting to just walk any distance. The joints are continuously inflamed and stiff. Everything is so slow when I do something. What was just a matter of a couple of minutes now takes hours. Garden work ,a toil of starts ,rests and restarts. Just keeping a sense of tidiness let alone of achievement in raising something beautiful and alive beyond me. Not that I was much of a gardener in the first place. It has been continuously an uphill struggle to keep a joy of life kindled in me, but I have managed it so far. There is so much to still see and to experience before the fire goes out. What has brought me pleasure though ,after years of battling with a reticent teenager, my eldest daughter is gradually aware that life as an adult has responsibilities. Maybe at last she will be able to stand alone and be the person that she can be. I think she is now seeing the light of enlightenment,but it would have helped if it had come quicker. Without all the fights and arguments, but a parent will never be right. I was just the same….

I have been going with the flow for a while now and it has made me soft and afraid. But I think it was a time that I needed in life. The vulnerability takes away the complacency. It becomes too easy to just go through the motions of living each day. I need, and so do others, to take back something from each day . Each day is an achievement it has never happened before and never will again. So it has to leave something of remark on my memory. It is up to me to make that day a remarkable one. That I had forgotten and I have let days be wasted as if they were of no consequence. I know I will still live to regret the squandering of the time. Life surrounds us, you don’t need to go to it because it will come to you. A quiet time spent in the world , watching , feeling seeing and smelling. Just absorbing all that is vibrant around you is time well spent. So enough of this computer keyboard, the day calls and the world is awake and calling.

Pondering the moment.

2009-04-06T19:14:00.001+02:00

You forget when you get older that all those you know are getting older as well. Recently I have been clearing through some of the clutter that has been relegated to boxes in far back corners of my cupboards. Some of them had been sealed for over 20 years, an Aladdin's cave of memories caught in odd photos. Groups of people that the moment was shared with, some remain fresh in the memory and yet others , no recollection of where and when they were taken. The nameless faces for ever trapped in that moment of time. I used to have boxes of pictures but over time they have been whittled away. Water damage,and theft spoiling more than half of what I have left. I lost a lot of pictures old letters and other personal items when my parents house was broken into and everything,even the toilet paper, was stolen. At the time I was living in a flat, although large roomed there was little storage shelves. So they kept some of my stuff at their house. So there we all sat myself my wife and my two daughters going through my past. Pictures of old girlfriends ,all probably grand mothers now. Shots of myself and friends partying, a few no longer with us due to life's twists. It's a pity that Polaroid pictures get a sort of orange /red hue as they age. Some friends and not often seen family members are know by my children and they go into hysterics when they see the fashion styles, faces and antics of people they now think of as being old and serious. My daughters ask about my old girlfriends , the what if's and why's of my past. Tracy just laughs and tells them that unfortunately they are stuck with us and then they started talking about what any children I may have had with these women would have looked like. Then out popped a bundle of letters. I forgot that I had them, yes you know the ones. Old love letters, stop laughing you who is reading. I wasn't one to really write these type of letters, but for some reason I kept these replies. Embarrassed, no not a bit. But I wonder if any of the ones I wrote still exist out there some where, now they might be a thing too redden the cheeks.I compare then and now, these days we put most of our memories on Cd' discs or store them in files on our computer. When we can be bothered we occasionally save too Hard disc and put them away. I just wonder what ,if ever, any one will get out of these discs when technology replaces the media we are using. A photo is simple you just look at a picture. How many of us now days have stored somewhere, 6 track stereo cassettes,audio tape cassettes. Beta max and even VHS tapes. Memories held in little boxes the media to bring them to life long gone as the machines are now defunct.Memories and your life can only be held by others when you can share them. With the fractal families of today who keeps those memories alive.How long after we pass from this world do we cease to have existed?

From the tip of Africa.

2009-03-27T22:01:00.001+02:00

Metabolic Syndrome is a cluster of disorders that includes insulin resistance, high blood pressure, elevated cholesterol levels, and obesity. The cumulative effect of these disorders can lead to type 2 diabetes and heart disease. Most physicians will prescribe the drug hydrochlorthiazide (HCTZ) for early blood pressure problems and Metformin for insulin resistance.

The problem is, HCTZ causes depletion of nutrients like magnesium, potassium, zinc, CoQ10, and sodium, but the package label only warns you of the potassium depletion. By unknowingly losing all of these vital nutrients, your body cannot properly metabolise glucose. So the end result is that medication being prescribed to manage blood pressure pushes the insulin resistant person right into the path of becoming a type 2 diabetic.

And that’s not all. Metformin will deplete B12 and folic acid causing your homocysteine levels to rise to dangerously high levels. This can result in kidney and cardiovascular damage and contribute to Alzheimer’s disease — all known consequences of type 2 diabetes. So by taking Metformin and not supplementing with extra B12 and folic acid, you could be accelerating the complications of the very disease you are trying to prevent!

Because HCTZ causes the loss of magnesium, Restless Leg Syndrome can develop. So after people take HCTZ for awhile, they complain to their doctors that they can’t sleep at night because of restless legs or muscle cramps. The doctor then prescribes Requip for Restless Leg Syndrome, when the solution is really to take more magnesium.
Just thought that the above may be of interest and could explain some of the problems which come with treating the side affects of active Hepatitis C.

You cannot help but dwell on the Hep C virus if for various reasons you have relapsed ,not been treatable or have not had any response from what ever treatment you go through. I have spoken my thoughts about it before. How does one respond when a person or friend announces that piece of news. It isn't easy. When it comes down to a life threatening event how do you support that person?I guess it depends on how well you know them. The majority of us treating this illness are only virtual companions. We are scattered world wide. Those who manage the forums we meet on have an unenviable job which they give their time to voluntarily.Often battling with their own or their partners illness they have to feel an empathy for others who having made themselves known have had their spirits dashed. This often has to be done in the public eye so to speak. Any words given are fed upon and it is so easy to put the wrong meaning to any innocuous word. Some may take it to be insincere or even flippant, or just the general unfeeling words uttered by one just glazing over what is very bad news to those involved.
I FOR ONE WISH TO THANK ALL FORUM ADMINS..This is not a perfect world and there are times when a wrong meaning will be conveyed and someone will get upset. I understand that it isn't from a lack of feeling, maybe just the all to human trait of being unable to form in words the sentiment felt. We all have put our big foot in our mouths at one time or another. Running a forum is in itself very selfless, takes a lot of stress and strain. In a world where we are unable to form or even share an opinion without having a defensive wall set up. To be sometimes the object of open hostility and blame and to be able to go on beyond that needs a very special breed of person. In the last 3 years I have seen the best and the worst of being on a forum. But good or bad they are places which we do need and do have support and can learn to be a better self.

Funny thing for me is I have made more friends since I have had this illness than I have ever had. Virtual .maybe , but with some a true friendship has been built up and mutual respect and caring given and accepted. I am in normal life very self sufficient. I can function very happily on my own. I like my own company and in general keep myself to myself. But it has been and still is a very warming experience for me to be involved and sharing probably for the first time in my life with others.

What brought out these words in me. I have felt a great sadness these last few weeks. To many of my friends have had the bad experience of receiving bad news. Every time one of them goes through it,it is like a piece of me has been chipped off. For with their successes I feel that I will succeed and with their losses I feel the numbers stacking up against me. So when I say I am gutted by the news I am ,but I'm not sure if it is for selfish reasons of my own. I am will always be an imperfect creature, it is those imperfections that make me who I am.

I am not a muse.

2009-03-17T19:56:00.001+02:00

Flu, something I haven't had in months. Reason, I haven't been anywhere . Guess what , the first weekends I go out what bites me. Yes , the flu. Not much that is encouraging has gone on lately. I find the simplest of tasks exhausting in the extreme. My clotting factors are on a seesaw, if I had been one to attend the haematology department of my health area , which I am supposed to do, I would probably be kept in , platelets are very low and my clotting factor IX non existent. Some relief is that the fluid retention issue has lessened off and my legs are more or less normal. As long as I don't stand for any period of time. It really sucks big time.

Well I am luckier than a lot of people and have many things to be thankful for. I am amongst a group of people who take me as I am.That is not an easy thing to achieve . I don't have to prove myself to them ,nor do I need to be in competition. I do find that often on the forums there is direct competition to be the most sickest. I would rather be the most healthiest, but will accept the state of health that I am in, living in itself is the only achievement I really want. The direct pressures on me are no different than most. Sick or healthy. The need to fund and provide a home for my family , food on the table and clothes on their backs. Yes there are stresses which are not ones that are easily ignored . Keeping employed and finding the health to work. But one can only do what you can . Often I wonder who is stressing the most about this. My wife who worries about the future or myself ,threading my way between being ill and finding the balance that allows me ,when able ,to actually physically work. I have personally stopped stressing about it, which drives my wife batty. I haven't given up or in too Hcv, I can only do what I can when the moment arrives, stressing doesn't get me any where.

I have more or less stopped posting on the forums at the moment. I haven't changed my point of view about HCV treatment but have said all I have to say on the matter. Let's face it, a three time relapser who is supposed to have the easiest genome to beat is n't the best encouragement. Also I am, in affect, behind with the times , there are new protocols and different treatment schedules.Unfortunately they are at present not open for me, so I cannot comment on something I am not experienced with. Although I do keep informed. Lets face it I have fallen off the bike and for now I'm not in the race, it is hard to keep up with those who are still doing the laps to the finishing point.

There is one bright ray of sunshine on the forums. There is more awareness of the virus in the general population. Those starting and receiving treatment are getting younger. Which means that there is more detection and activity in giving treatments. The older ones of us know that in previous years you had to be pretty stuffed before treatment was considered which is totally wrong. MORE PEOPLE ARE BEING TREATED BEFORE FIBROSIS OR CIHROSIS sets in. Hooray for that. Brighter on the horizon is president Obama's statement of intent to allow the use of foetal cells for research purposes. This is the way forward for medicine. Right or wrong only time will tell. But it is a path that needs to be followed though with. All moves forward are in a sense unnatural.The human beast in it's entirety is unnatural today. If it was left up to nature we wouldn't survive in direct competition.Naked, weak and prone to illness we would soon be driven to extinction by some natural predator. Probably one so small we cannot even see it. Lets face it we are even food for fungi. You are being lunched on even as you read. A living microcosm for microbes , worms, bacteria and virii. A constant battle ground of cells eating cells. Cells going mad and wanting to take over.
Cell research is definitely needed. As we are human it is pointless always using animal studies all the time. Also the present human cell cultures allowed by license are now pretty far from the original ones due to the age and the replication errors which come with successive generations.

I can't but feel that some time in the past the original host of the hep virus had some sort of mutual symbiosis going on which was beneficial to both types of life. We must have altered that in some way. Life will fight to succeed for the future and I guess I can't begrudge the virus wanting to live it's a pity it is doing it in me.

The battle still goes on, I hope that refugees from my battle haven't managed to escape and gone on to fight in some one else. If they have then I hope they are puny little B's and are impotent .

Who are they, those that ride the dragon??

2009-03-05T19:29:00.001+02:00

As cirrhosis progresses and liver function gets poorer, other problems can develop which may include:
• A rise in blood pressure in the veins coming from the intestines to the liver.
Blood tries to get back to the heart by bypassing the liver through
connecting veins, which are not normally open. These veins are found in the gullet (oesophagus), stomach and lower bowel. Increased pressure can lead to rupture and life-threatening bleeding.
• Increased fluid retention in your abdomen - a condition called ascites.
Ankle swelling can also occur. This results from increased blood pressure plus a reduction in blood protein levels normally produced by the liver.
• Easy bruising and bleeding because clotting factor levels in the liver platelets are also reduced.
• The liver may no longer be able to clear drugs from the bloodstream, causing some people to become more sensitive
to the effects of pharmaceutical and illicit drugs.
• The liver may lose the ability to clear waste products from the blood. One of the effects of this can be confusion or coma when such wastes affect the brain. This is called encephalopathy. Jaundice is the name given to the yellow pigmentation of the skin and eyes, which occurs when the liver cannot clear bilirubin from the body.
A typical sufferer's experience:
“I get a lot of liver spots on my arms.
Sometimes I get a number of them and feel
quite embarrassed. I’ve had one about
eight centimetres in size that appeared like
a dark birthmark. Unfortunately, when I
knock them, they bleed easily and I have to
be very careful with bleeding because my
blood doesn’t clot properly…I also bruise
easily, I have bruises all over me.”
“I experience … almost obsessively itchy
skin at times, and all over my body. I also
seem to bruise easily. I’ll wake up in the
morning with superficial bruising on my
skin. My skin gets quite dehydrated [dry],
especially on my face.”

They describe it as fighting the dragon. But the dragon isn't the Hepatitis virus. It is that what makes us human.
The dragon is life and how you live it with the virus and how you have a fight on your hands ,daily, just to get by . It is the fight to put food on your plates . clothes on your back and a roof over your head. The battle to get treated and find someone to tell you how the treatment works and may affect you. It is with the depression and fear which clings to you like sweat. It is in the uncertainty of it all. In the feeling of not having a purposeful life any more. It is with the lack of respect which is given to you by those who should know better. It is with the itching and scratching , the headaches, the nausea, the boredom of being trapped energy less in the four walls of your rooms. It is with the raised blood pressure, the blood sugars , the monthly blood tests , the fear of not responding to treatment. It is the fight to remain optimistic, to put up with the constant blood tests . It is in the battle to keep sane , not to fly into unreasonable rages. The war is feeling alone and not loved or fit to be loved. It is the guilt of having this illness and maybe passing it on. Fighting not to get worried when your legs swell or you find blood in your urine or stools. It is in the pain which seems to have no focus. The dragon isn't the virus. We ride the dragon and it is what our lives have become.

I relapsed after all my treatments and have found that all forums are mainly for those who have yet to receive treatment or are doing treatment or have successfully cleared. Little is mentioned or very little support is out there for those who cannot do or failed treatment. My reading of the web pages I go surfing through ,is, that there is a higher proportion of failed and relapsed treatment patients than credit is given for. Apart from brief mentions ,nothing else is said .As if the failure to achieve a sustained viral response is CONTAGIOUS and that in that failing will be rubbed off onto others. Yet we tend to be the first to give support and help to those who are in need of it . In our treatments we are the ones with the experience. Often the ones who had the hardest passages through treatment we still feel the need to be included. Do we become the lepers of those who feel that Hcv is social leprosy? I am a dragon rider. My shield is scorched and dented. my armour is in tatters. But I ride the beast and it will answer to me. I am and always have been the Rypere.

The stealer of dreams, he who lives in the souls of others.

It is as it is

2009-03-03T20:31:00.000+02:00

Last night another youngster from my girls group of friends committed suicide. As usual the news came late in the evening ,I had been in pain all day so I had already taken my pain medications and sleeping pills. Once again this youngster was a regular to my home. My house is always full of kids , it gets a bit much at times, but I rather have my children here with their friends than out on the streets doing I don't know what. Unable to drive I was stuck at home whilst my wife drove my daughters looking for one of the lads who took the death of the last too die very badly. Not two weeks have passed and another death. Gladly he was safe and his parents are taking him too a councillor to help him through this time.

I wish to thank my friends who chatted to me last night . I had to stay awake just in case I was needed and the tablets were already working. Thankfully there was no more trauma and after a short chat with the girls went to bed. It was mentioned last night that there was a higher preponderance of mental instability now days. I don't agree, it is easy to put a label on events and assign a blame. I myself blame it on social instability. The breaking down of the family unit. Few families stay within shouting range of each other as it did in the past. Miles separate the families more often. Children grow up not knowing who or where their relatives are. In the past birth and death was all natural in the cycle of a family's life. Children saw first hand what was going on and were passed on the knowledge of being part of a group of related people with their place in that group defined. That has passed most of the present generation by. Especially in the first world. The third world is catching up quickly on the trap of this life style and it is now beginning to show where the individual now only takes responsibility for them selves and has no responsibility to the family.
The family was the security base which one could return too. It was a place of familiarity . With the age of some of it's members came the knowledge of how to deal with daily affairs. It was a place to belong and feel loved. Death and birth were family events and not something one just saw on the screen . The coping mechanism was learnt through out the junior years. What is happening here in South Africa is happening world wide. In search of personal wealth the families are fractionating , responsibility is shed when it is convenient and family's are no longer tied. Marriage is only a contractual piece of paper giving certain legal rights to parties contained in the paper that is signed. I will not be two faced about it . I was married twice but the intention was to stay married not to end one. There were no children , if there was it may have been different. Children are left on their own to much today. They leave an empty house at the start of the day and often come home to an empty house and have to look for them selves till the parents come home. Tv is the only company and is generally the only thing making any noise at night. No communication , just a group of strangers the only thing in common are blood ties. The parents are to tired or too stressed or busy catching up that there is no time between work and sleep to get to know the children. Wealth is measured in ownership and having stuff is all that matters. My question is , who is it for, what is the point of having something when it is not used . What is the sense of earning fat salaries if all you do is buy things and work. Is wealth worth the price.
Who do children have to go to when they need some body. Who is at home that can just be there and see that something is wrong . Could you recognise it in your own child. Does the child know that they can come to you and you will listen. Listen , don't just hear, understand don't just agree. There is more love in a hug or a kiss , a squeeze a shared laugh than in the worlds most expensive gift. Trust and love is earned , it is freely given but rarely received.

We are here not for what we have to gain in life but that what we can give to our futures. Our futures are in the children and sadly it seems what we leave for them is not ourselves but just a pause.

well it's another day.

2009-03-02T19:32:00.001+02:00

This is definitely not my work station. But it could be a picture of how my life is at present. I need to clean up my act. The only good thing that has occurred is I have had fewer bleeding episodes. I am getting progressively more tired and seem to feel washed out all the time. The feeling of tingling and numbness has spread further . Have you ever laid on a hand or arm and you get that pins and needles ,dead mans hand sort of numbness? That's how it feels , but much worse in my feet. The continuous headache is always present and my eye sight is failing fast. I have had a doctor check me up and do tests and he can only say it is probably side affects of the Hep c virus. He can't be sure. Depressingly I have been reading lately that there is more evidence that the virus does infect and interfere with the brain and central nervous system.

I am finding it harder to control the cramps in my hands and legs. They actually leave me bruised in a way that you can see the bruises. Strange. I have become used to the way my body swells and then subsides. Haven't found how to stop it yet but will I am sure. I am ,though ,getting more frustrated. I hate what is going on with my body and wish that the virus gave you purple spots or something. I will brain the next person who says I am looking well. Also I have heard that there has been talk that I have gotten lazy. People even ask my wife how is that lazy husband of her's doing. I have issues enough with my lack of energy and drive that I don't need back biting added to it. I've also heard that I am into
criminal activities, that's how I can still manage financially. Would never do that sort of thing as it would pray on my mind all the time. Funny how people think isn't it.

I have managed to a certain extent to return to work , but not with any great success as I tire and get clumsy as the day progresses. My mind sort of goes into a limbo and doesn't think ,just goes about in automatic function. Also we have been having an almost continuous heat wave and I over heat , that I know for definite is the virus. It was one of my earliest symptoms and I love the heat normally. Keeping my saliva glands going is also a problem as water doesn't lubricate and my mouth is always dry. I am forever having to wipe my lips as a scum builds up around them. Yuck! One thing that looks better is that my whole upper torso is now pink, the gaps in the blotches have totally filled in so I look as if I just had a little to much sun. It looked bad before ,big red patches which looked contagious. I found that by using a oily shower gel my legs don't itch so much and it is a relief not feeling the need to scratch all day. I don't know if other people with Hep find that they don't shed skin normally, instead of shedding dust it is as if you shed scales.I shower 3 times a day most days, but still have dry scaly skin. And yes I do cream up like a lady with skin nourisher etc. I even smell like a woman most days , I pinch the lotions from my wife's supply., men's products are over priced.

Re-treating and doing another protocol doesn't seem to be on the cards for me at the moment. I have pushed to be on one but as of yet South Africa doesn't seem to be on any trials list at the moment so I have to wait for the next drug to be released for use.Trying not to feel sorry for myself is becoming increasingly harder. Maybe it is fortunate that I can still see the funny side of things.My wife is a strong Christian and keeps on saying that god has a reason for everything. I just ask but is it for my good or is it just perverse and does everything need to have a reason.Things just happen.

Memories

2009-02-19T19:32:00.001+02:00

My first real memories of my mother was when I was about two. Really it had to be because I was laying in my cot and she was pregnant with my brother Raymond. My mother was anorexic in her thinness. Due to Krohns disease and from frequent bleeding episodes she could barely eat enough to survive. She had this thick mop of bushy ,curly hair. Coal black in colour. Big wide eyes , made more so by the thinness of her face and hard cheek bones. We were staying in England for a few months because of her illness and the difficult pregnancy she was going through. I don't think my father was there. I have no recollection of him during this time . It was during the time of the Sino/European conflicts in the far east. So I feel that my father was stationed either in or near Korea or Formosa or Vietnam. I do know that he saw active service in the French /Indo- china war. The mental scars from this time would be there for the rest of his life. Walking bombs were the norm, the early days of the so called suicide bombers. But they were not free agents usually they were toddlers and young children, strapped with explosives and sent into the troops on guard. I know my father was involved with the evacuation of civilians and had to fire live rounds at any suspected person crossing a no go area. After shooting a child the person doing the shooting prayed that they blew up. More often than not they didn't, that was the hardest to accept.
On the day Raymond was born my mother haemoraged and was rushed more dead than alive to hospital. Raymond was breach and in trying to turn him was severely injured by the doctor. He would have that damage all his life. He was crippled from the waist down . Not given the hope of ever walking. He eventually, after years of operations and wearing callipers ,would .But one leg would never be more than a stick . But that is another story and probably not mine to tell. This was the start of frequent separations and difficult years during my childhood. From that time on until I was twelve I was more often than not under care of the naval welfare system . This,I'm sure is what made me estranged and different from my family. I had spent too much time as an individual and was used to my own company. Not good for a child.

Hardly had my mother came out of hospital we ended up in Malta ,where my father had managed to get transferred too due to my mothers health.Here my youngest brother Steven was conceived and born . There is just over a year age difference between Steven and Raymond. I can remember flying for the first time and I loved it. I always would and always will. When I eventually started working on and with aircraft it was a dream come true. Sadly my own health problems would take me away from that environment.

Those were strange years the end of the fifties and the beginning of the sixties. Due to the second great war this was when countries still had rationing of different goods. Industries heavily hit by wartime shortages ,economics and lack of staff were gradually rising above them. There was a new found freedom . The war had caused a lot of the social barriers to fall away and the points of view of the different classes were having a big revision. It was a time of experiment . Clothing ,music, jobs ,wealth and differences between the sexes was under scrutiny and very big changes were coming about. The true years of mass production, education social reform and hope for a better and more affluent future was coming to the fore. But still the world was split. New nations now would dictate what direction economics and power would go . The great divide between the east and west would for the next forty years be the biggest factor to control the world. Into this I was born and would grow up. More has happened in the last fifty years and at a faster pace than the two millennium before.
Malta would be the lull period for me, my mother would go through several cancer operations. Raymond would start on his life time of having his body repaired and Steven would be crapping everywhere screaming to be fed and generally being spoiled. This would be the longest period in twenty years that my father and I would spend in each others company and he didn't have a clue how to handle me. I was a strange child. I was born old in spirit and had already shown my stubbornness and to paraphrase the movie "I saw dead people". I still do , but that is another story and will really confuse those unbelievers.The funny thing is though I don't believe in life after death. Been there , done that and no bright lights .tunnels or ancestors the other side. But I will write on it one day.

There is a message

2009-02-11T20:01:00.001+02:00

I love reading. Many days have been filled with the magical verbal images that are formed. There is one problem though, when I read nothing else exists but the words in front of me. Time ceases to be and I am lost in the magic. I would love to be a wordsmith to be able to wheeled that wand and paint the colours of imagination. But alas I have little skill. I lack the ability to put down in a few words the chemistry that it takes to paint these pictures. I must recommend my latest read to all. A relatively under read author but an excellent master of his craft William Horwood. For me he has the ability to both amuse and hit the sore points in my heart. His book ,an old one, entitled Skallagrigg ,has had me in tears for the whole read. I can relate personally to it. Maybe not physically to it's central character who suffered Cerebral Palsy, but too the difficulties of life which it entails. A confusing read to start with, it becomes more addictive as the chapters flow and an understanding of the difficulties of life past and present are gained. All who have had experience in life ,can to an extent gain and feel the frustrations of living a less than perfect life in a more than slightly damaged body. So the book is .Skallagrigg by William Horwood. A story of love not a love story. Ladies get the tissues out and guys read it in the bathroom it isn't nice to see a grown man cry.
Tracy and I have decided that we shall spend some time in England. Tracy , because she has never left South Africa and myself to view the changes that time has wrought on my young memories. Apart from mad rushed working visits ,on plane off plane do what is necessary and then back onto plane. I have done very little enjoyable travelling for years. There always seemed something comes up that is more important . Lately it has been illness and operations. Having a young family and just being ready constantly for the costs of having to cope with my health problems coming first. This will probably be the last chance for me to do any fun travelling and still be able to get about under my own means. There are a few considerations still to be made but it is almost a definite. I really miss my get up and just go days long past. It is more than likely that we will hire a house or flat for a couple of months and spend some leisurely days just wandering about. I think it will probably based from the west country which I know well and from their I will visit with a few friends and family that remain too me in the UK. Enough said and until firm and final arrangements are made it is on my wish list for soon. I think that some people are in for a big surprise as I am not who people expect I am. You'll see.

A war in my worlds

2009-02-10T21:04:00.001+02:00

I think that there has come a time to take stock of my world. The chances of my one day beating the Hep C virus are optimistically bright. As the casualties sustained in this war mount there are times when I feel that it is just getting too much. For a while my spirit flagged and I was prepared to concede that I was going to lose the war. But in reality it was just one battle in a series of battles. The final winning or loosing battle yet to be fought.

In a lot of aspects I have gained much. Humility,friendship and a view point which is only gained from viewing life as member of a group of people who have a sudden darkness thrust on them.
Patience in the extreme has to be learned. For nothing is a quick fix in the treatment and management of this virus. The highs and lows seesaw back and forward every day. Having to manage my health most of my life ,my expectations where not beyond reality.But one thing I have found is a sense of insecurity. I for one ,need to have something that is fixed to build my plans on , my hopes and wants for the future. That is sadly lacking.
It seems to me that gradually you build a shell of discomfort about you. Things don't quite fit. I, most days, carry an intense weariness with me. Almost a total lack of energy which causes a state of diminishing drive. The sick drowsy headache I have persists all day. Not intense, it is just enough to be a distraction, a back ground noise which irritates. I have difficulty making decisions , I have lost my confidence in things, stuttering through the day just keeping up. A feeling of panic just under the surface ,making my stomach tense and churn.
I often sit and think that I have become a hypochondriac . Are my symptoms all in my head, am I really feeling ill, why don't I look ill? It has almost become a complex, I feel that my day consists of excuses and that the people I work or deal with have thoughts that I am playing sick.

In some respects I am fortunate that I work for a boss who understands that I am battling to be fit for work. But I am wondering if I am being wise. The work can be very physical, mentally draining and is extremely stressful. Non of which is sustainable for me. I don't recover from what was a normal working day any more. Often it takes weeks for me to recover when my health slides. It may be better for me to loose my job, find one which suits my present capabilities and return later when I am more able. I used to be a master at my trade but I can feel it slipping away. Being indecisive does not help when you are dealing with high costing projects and materials . When one mistake will either compromise a life or be the difference in profit or loss on the job. I am beginning to make silly mistakes. At the moment not ones that have any effect ,but leave me with a sense of dissatisfaction. I am not working to the standards which I expect and prepared to accept.

I suppose I could write a list of all the ills that Hep c has brought on. But it isn't any different than what many others suffer and today it is not what I want to dwell on.

Just a little chat

2009-02-08T11:48:00.001+02:00

Well I can not be happy with how I have been over the last couple of months. Christmas time has been for years a time which I cannot enjoy. I think there is a certain period which all of us experience a down turn in our attitudes. I have had some pretty bad experiences over these few weeks at the end of most years and I guess have grown to expect the worse.
I had allowed myself to slide to low into self pity and for once just gave up. That in itself is not the way I cope with things. I don't rise too challenges I tend to just dive in and get things going. Not being able to affect any advance in my being able to get on and fight the virus drove me into depression. Not clearing ,after all my attempts too, was not the high point in my life at the time. But I had always up to now another option of fighting it.

One evening two weeks ago I was laying out watching the stars and I saw one of the night flying birds high in the sky against the lights cast up by the city. It seemed an impossible task for what was a creature of the daylight to navigate it's way home. But it flew on with a determination and a confidence that this is it's route. But for a few minutes it seemed too loose direction and then regain it's way and carried on. A little like what is happening with me. I lost my sense of direction and didn't know where I was.
Fundamentally I can only survive if I keep slogging on and even if it is against hard days, can only be who I am. I am an ordinary guy , with an ordinary life. I have a family, a job even a few friends. If I haven't got health so be it but I am lucky and I hold dear that which I already have . Many strive for that which I take for granted, those things you cannot buy.
I am amazed that I am well loved by many. I have received many little messages of friendship and support these last few weeks.
BIG LUMP IN THE THROAT TIME FOR ME. I have to thank you all for caring about someone such as I. I can get by without you ,but you have all made doing so a much better path to follow.

I was also very surprised how many actually read this page. I hope that I can keep you entertained and feel that in many respects we are all under the skin not much different. I have so many stories still as yet untold. Like the one when my dad drove into the backside of an elephant (didn't hurt it mind) and almost wet his pants when it sat on his bonnet of his car. Or the times as a kid I used to go line trolling for fish by walking in the shallow waters of the bays and was passed by a little dolphin which was being chased in ankle deep water by a shark. Sharks have a funny huffing sound when they exert them selves. Well today isn't really a good day to write as it is too nice outside and I am heading there. I will continue later.

Thoughts on life

2009-02-01T15:05:00.001+02:00

I had a chat today with one of the ladies with whom I sometimes message. It led to my thinking on things , this eventually led me to musing on the worth of ones life. I have on a few occasions been present when a life has finally come to it's conclusion. I often wonder is it a time of celebration of a life well lived ,or one of sorrow and regret of an ended relationship . Death I feel isn't an end to a relationship, because if you are true, thoughts will still come back to those who have passed. I think that death holds far to much power over us, that we are so scared of dieing that we forget to live. It may in my case be a wanted and welcomed visitor when it does arrive . I am not so brave that I want to struggle and be in pain fighting for those last seconds. I have no fear of it but in it's manner of visiting that I fear.
When my dad died he had an awareness that it was coming. My mum and he seldom went to the beach in the evening. Sitting in the car he asked my mum to see if the boat had beached itself . She asked him what boat and he said the one that was calling him off of shore leave and was sent to fetch him. He hadn't been on a ship on duty for 16 years. He then rested his head on mums shoulder and closed his eyes for the last time.
My aunt Dorothy was my second mum. She was dieing ,cancer through out her body. She fought it for a year and was just a skeleton. When she was finally bed ridden, towards the end ,I couldn't visit her. I hate the smell of death. I also wanted to remember her as the big , laughing robust woman she always was.
The week before she died she ordered that I was to be fetched we needed to talk. She had been taken home so she could pass with her family near. So I had to go, ushered into her room she told her son to open her curtains she wanted to see me in the light and enjoy my visit. She asked me to tell her the truth. So I did, she was terribly afraid of dieing, we sat and talked for hours.No one else was allowed in. When she asked, is she going to die ,I said yes and she thanked me , every one else just said she will get better. As I had died several times and been retrieved she asked me what it was like and I told her I hadn't a clue. For me there was no bright lights, tunnels and dead friends and relatives. As she believed that I have the power to heal with my hands she asked if I could heal her and I told her it wasn't within my abilities, not since I was a child. So we joked and laughed about things, about her marriage to my uncle and how I had given her strength to carry on and enjoy life after he died. I asked her how she wanted to meet death and she said not afraid, as she had so much she still needed to do and her children , all of whom were grand parents themselves ,needed her. She was in great pain they had already removed her stomach and was being kept alive through a pipe and drips.I remember how translucent her skin was and how her thick white hair shone.She asked that I pass her the strength to go on with what was coming . So I did, for we both believed that everything can be shared and that strength can be given to another. Not physical but spiritual. After several interruptions from my cousins saying she should rest I said that I wouldn't be back in this lifetime for her and I would say my goodbye now. I wasn't allowed to go without hugging her and she struggled up . So I did so, she was like a blade of grass , so thin and bent, nothing just a whisper between the sheets. She told me I was always her special child and I guess I was. She passed one morning a few days later, she told her son that she was feeling no pain and wanted to see the sun. He went to fetch pillows and was gone when he got back. She got her wish. Peace and no pain at the end.

I let my mum down , she was alone at home when she died. It was between TX's and just after I had a major op 3 months before.I was not too well myself at the time and battling to work. She had come out of hospital two days previously and was supposed to have been taken straight to a recovery clinic. A home care nurse was supposed to be there for at least a week to help clean her and change her dressings. None ever turned up, excuse was she died before it was organised. So how is it they sent her home. I'll never forget the look that was on her dead face , shock pain and you can see she had fought for life till the end. I didn't pop in that morning as I was going to spend the afternoon there and cook some things for her so she had some hot meals stored away for a few days. One of her cousins lived across the road so she helped get my mum ready for the day. At 8am mum asked her to draw her rent money and she went off to do so. There was a problem at the ATM as my second cousin had forgotten the pin code and on return found my mum dead. So she died alone , the people she shared house with said they heard her call but when they called back to ask if she wanted some thing she never replied. When I got there the first thing that they asked me was had my mum got her rent money yet as they needed it. My mum had paid 3 months in advance I found out later. So with everything else I had to pay her rent. It took 7 hours to get the body removed. The guys that came for her were to puny for the job so I had to carry her down the stairs. I took the head and they the legs. My MUM DIED ALONE that was the one thing she didn't want to do, she didn't want to die ,let alone, by herself. It must have been terrifying for her, she choked to death on phlegm which she couldn't clear as her lungs were to weak. This cause a heart attack which pushed her over. I will burn in hell if there is one I'm sure. But I was going there anyway. Another thing on my long lists that I need to be forgiven for.

So 3 very different aspects of a daily occurrence.My choice of death. Given time ,pissed as a newt partying to the end .I don't care if I'm naked or clothed I just want to have fun and enjoying the moment. Yep that's me , I spoiled a lump in the throat moment. I'm still alive so the party hasn't happened, but is still under construction. Life is the reality and that is where it should be. Out there and real, not a fairy tale with grand endings . No one lives happy ever after, but you can be happy before the hereafter.

Reflection from a puddle.

2009-01-28T21:27:00.001+02:00

I suppose that the last few entries in this blog have been very somber and full of self pity. I guess it is the level of frustration I have found myself at. Frustrated with myself , the world and life in general. If you follow the self help gurus they say keep your self active get up and form a routine. Set yourself goals, small ones that are achievable and build on the success off achieving these goals. My thoughts are this. It is very fine thinking and acting along these lines, but depression isn't something that comes on suddenly. Your not happy one day and depressed the next. Unhappy maybe ,but there is a vast difference in being unhappy and depression, depression is a gradual decline.I have had problems due to my bleeding disorder all my life. In the main I have managed to work around and get a sort of viable relationship with this. The discomfort and manoeuvrability problems can be worked out by effort and a sustained endeavour. I can't say it is from a sense of strength of mind or will power , but one of gradualism and necessity. Luck also plays a big part in it.
I , for one , have found that my present problems vastly different and the approach taken to get beyond it still not obtained. I haven't found a way of living beyond what is present at this very minute and I have really tried. For a while I had a feeling that to a greater extent my failing abilities were ones of a lack of fibre and drive on my part. It is not so.
As an analogy imagine this. Life and health is a metal can. It is bright and shiny when new, created unique it has it's own built in defects. It is built to hold something and does so adequately if not perfectly. Through the course of time it becomes dented and scraped, shaped by it's use and environment. Occasionally the purpose for what it was originally created for is changed by the circumstances of it's environment. Dented and scraped it still can keep safe it's contents. One day a virus comes along, rust in this case. A little sand paper and paint is applied, for the time being everything is still sound. But the rust isn't totally removed and it comes back and spreads. Repairing is fine but the walls of the can are thinning. Each time a little more rust is not removed and eventually pervades the whole body of the can. Time moves on , the walls have thinned now that in places holes appear. The contents now start to leak out. Again repairs are made but now the walls are so thin that the strength and integrity is compromised, repairs are less effective and last for shorter periods. One day there is no wall left to apply the repair , the rust has removed all the original material , the contents can no longer be held safely and gradually leak out. The shape and idea of the container remains but the functionality is lost for ever.
So today I am the can, Hcv is the rust and the story may end the same. Thank god there is fibre glass ,slapped on the outside it can keep the contents of the can in for a while longer. I'm still waiting for my fibre glass. Maybe even carbon fibre. But if this old can of a body is worth it I'm not sure. I think it all boils down to the fact that there is only so far you can push yourself and there must be a point where what you are achieving is as good as it gets. It doesn't make things any easier, but by blaming yourself for your weakness is self serving and achieves nothing. Accept that you have weakness may even become weaker, but keep the hope going that there will be . There must be a time when you have to be a looser. Winning is important but loosing isn't the end of things. It just means that there is still something to gain and in itself is a goal. Maybe just out of reach at the moment ,but one that is still present and could be achievable if you keep on stepping in that direction no matter how slowly.
My present goal is a small and achievable one and that is to uplift my spirit and regain my passion for things. To look at the beauty that is the day and wonder at what it means to just realise. To be is the most wonderful thing isn't it. It doesn't really matter what you are just that you are!

Wish my arse wasn't so big...

2009-01-19T19:50:00.001+02:00

I often wonder if anyone reads this ,but for myself it is cathartic. I find that it frees my spirit and allows me a medium to concentrate my most immediate thoughts. More often than not I don't publish, hence I achieve an unloading and a reference of my feelings at that time.
I have been going through a very difficult period lately and must admit to having the want to end the journey through life. There has been things and thoughts that I have been trapped with that I cannot and could not share. I have had an out drawn period of self disgust and personal loathing which I am still trying to work through. It is a sad time when the day becomes a burden too you, one when you wake up and you fear the impermeable monotony of what is about to come.
It is comparable to being on a very small traffic circle , one that has no exits save the one you entered it on and your vehicle is running out of fuel. Do you speed up and get nowhere faster, or slow down and get nowhere in as long a time as possible? Now just imagine that each revolution makes this circle shrink in size, eventually you will catch up with yourself and disappear up your own arse. So that in effect is what you become ,someone who is going nowhere and will be your own event horizon and rectal implant all in one foul swoop.

Imagery is all that has sustained me lately, not even the virtual on line world has brought enlightenment too me.
I have now the strongest feeling that I will loose my place of work. I find that no matter what I try I cannot sustain the mental or physically abilities it requires for any period of time. The circle is reducing for me very rapidly and I can see my arse already , in more ways than one. Tracy has, no matter what ,been my strength through this all. I wish I could hold the positivity in everything working out like she does.
I have been having heavier and more frequent bleeding episodes and now I am actually having through the skin bleeds. Ones where without a wound ,blood comes out of my pores. It hasn't happened often but is very disturbing. MY BLOOD IS CONTAGEIOUS. My latest Pcr was not a good one my viral count is tripling every time I have one.
I have achieved that state of Nirvana where I'm physically too tired to feel tired. I am exhausted and I only have been posting for 10 min's or so.
My brother Steve is still battling on with his treatment, like I did he finds that progressively it becomes harder each month. He has responded and is at present almost two thirds through his treatment. But it is more than likely that he , like me, will not sustain a negative viral count for long after treatment. His only advantage is as of yet he has little liver damage and the TX will allow this to go on for longer. I do hope he achieves full svr status, he is my baby brother after all.

This year is going to be the make or break financial year for me. Maybe that is what is pulling me down into depression. The choice which I have to make is ,do I continue paying for my increasingly expensive medical insurance, or stop it. Two thirds of my monthly income is going out on medical services of one kind or other. I stop it and I will have to rely on a practically non existent public health service which also charges high costs to those with any assets. I will then have to rely on poor quality untrustful medications. Out of date , badly handled blood products and a lack of the necessary tests to keep things going health wise. All that it achieves is lip service to an outside world beyond the realities of life in Africa.
Africa is not a place for the sick, poor or uneducated.. You would be eaten alive if you are. South Africa is not what you see on the TV. Only the varnish is in the first world ,the actual picture is painted in graft, corruption, blood ,theft. Apartheid has ended but has been replaced by a plutocracy. Politically the freedoms so much espoused is not in effect. The country is still led by the wealth and corrupt power of the minority. Only the colour and faces have changed.In a collapsing system standards are lowered , health ,education and employment being the main losers. I often wonder if the rest of the world realises that the future of this country has been more or less placed in the hands of a bunch of w..kers who are relying on a the football world cup to pay for and bring the needed funding of investment into this country.

Personally I wish it was just a white elephant and not the whole damn herd they are putting the future on.

Well if you have now managed to wade through this diatribe I thank you. But it has done me good.

It's been a crappy year

2008-12-31T19:57:00.001+02:00

Well it's the end of another year. Not one of outstanding achievement on my part.Personally unremarkable, just a case of hanging on and riding it out. It has been a hard one on me though. It is surprising how soon you can be replaced, displaced and forgotten. Lately I am no longer included in any plans for functions, trips or decisions regarding the future. It goes beyond being ignored, I just don't exist in the big bad world. It's loss for I find it is better to slip unobtrusively into the back ground . You get a view of who are your real friends and who are the ones who are using you. No it's not paranoia, people like to ride on your shirt tails and take the icing from the top of the cake. No icing and they move off to other cakes. Aside from some financial pressures I had/have been forced to be more static and less reactionary than I usually am. I have had plenty of time to sit back and think on things and I have noticed much. Stored for future use it will come in handy later . My years of being physically able too cope is I am afraid passed . I have had and will have to make some changes. I have also noticed that my ability to think and sort problems has declined, the brain has slowed right down and it takes longer to think things through. I once was fairly capable of mathematical problems and now battle to understand what was fairly rudimentary problems I sorted out not that long back. I have also noticed a change in my short term memory, also I no longer dream. I used to have glorious vivid dreams. I can't remember when I had my last one.
The last year has also brought on a progression in the strange lack of sensations in my hands and feet, my ability sometimes to manipulate and grasp small items and the constant muscle spasms. The cramps are wicked and often leave me bruised for days. My blood pressure and sugar levels are monitored regularly but my eye sight changes from day today so it isn't due too blood sugar or blood pressure. My main worry is my feet, the continuous fluid retention in my legs and the swelling of my feet is giving me some distress. Extremely painful and resulting in joint bleeds and further damage. I'm in dread that one day the circulation will be destroyed in my feet and they will be amputated. I'm sorry but that will be one thing to much and bugger this illness and the chances of beating it I will kill myself.I have no interest in quantity of life and I have had a life time of restricted quality. It would not be worth it to go on. Yes it is the wrong thing but I have the choice and as I believe that this is all you get , you live , you die and then nothing............
So next year will be a better year for me, depressed I am as low as I get. Tomorrow I restart the fight to affect what I can and go with what I can't. I am down but I'm not out.

Ah well what can you do?

2008-12-09T20:48:00.001+02:00

I must be a walking pharmacy, pills in the morning , pills all through the day. How did I let it happen, in what way did I fail to watch over my health?Even though I have had issues with my body over the years it has only been lately that pills have governed my day. The worst of it all is I need to take them. An acquaintance from the Hcv forums asked me recently has things got worse due to the side affects of treatment or from the virus itself. To tell the truth I don't know. What I do know is ,that as the days progress, a little more of me slips away into the void. I must admit that I did feel a lot better after my first peg treatment, but this was short lived as the virus returned. For a couple of months I did feel that I was getting well. Since then things have got a lot harder to deal with. I feel some times that it is a lack of spirit and drive in me that allows myself to surrender and not make the effort to get well. But that isn't so. I think that there is a finite amount of effort a person can have of resolve and drive. All the effort comes to a point where nothing you can do can alter that which you have no control of.

I have been unwell now for the last two months and hold a great disappointment in myself. I question how much of it is illness and how much is it that I have just given up? I haven't an answer. It seems to me that I am forever having to look for excuses. I feel that I have been diminished in myself , that I have been ill too long. I go through periods when I feel I need to stand up and scream at people. "No I am not malingering, I'm not lazy. I may look well but I am sick!!!!!! "I haven't the fortunate choice of pretence , each and every day I battle and lately my armour has become unbuckled,tarnished and large dents and holes are appearing. I haven't even got the choice of acceptance of things. It has nothing to do with choice. It is what is. I get days when I wish I was actually in the end stages of things instead of hovering around the edges with my cirrhosis. Then it would become obvious that I am and was ill. How is it that these days I need to feel that I have to have visible proof?

This illness is also very distracting as well. I am a moderate to severe bleeder , having haemophilia is a trial in itself. Personally I can in general handle a lot of the viral effects ,to a greater or lesser degree. But what I cannot manage is the fluid retention and the swelling of my stomach. I blow up like a Mitchelin man, a big fat Pillsbury dough boy. The fluid in my legs causes bleeds in the feet and ankles and toes and it is excruciatingly painful and apart from clotting factors all I can do is become immobile. My fingers grow like sausages and if I'm not extra careful I bleed into the joints. You get to a stage ,over a life time ,of actually anticipating the pain and you try to get away from it. You cannot, if you bleed, it is going to hurt and you can't drug up on pain killers all the time.People around me have forgotten that I am a hemophiliac.I certainly haven't.
Why have I written this today, it is I'm afraid a need to purge on my part. It is near the seasons holidays ,I haven't been at work for a month or so now. I am finding it hard to justify in myself the fact that I am not fit to work. The guys I work with, who I am very fond of, don't realise that it hits me really deeply when they ask if I'm enjoying my holiday,lazing around in the sun doing nothing.I'd rather be at work.............

A small piece about hemophilia

2008-12-02T19:17:00.001+02:00

What is hemophilia?

The word hemophilia derives from two Greek words: haima, meaning blood, and philia, meaning affection.

Hemophilia is an hereditary condition. This means that it is passed on from mother to child at the time of birth.

The blood of a person with hemophilia does not clot normally. He does not bleed more profusely or more quickly than other people; however, he bleeds for a longer time.

Many people believe that hemophiliacs bleed a lot from minor cuts.

This is a myth. External wounds are usually not serious. Usually because they are open and accessible .Far more important is internal bleeding (hemorrhaging). These hemorrhages are in joints, especially knees, ankles and elbows; and into tissues and muscles. When bleeding occurs in a vital organ, especially the brain, a hemophiliac's life is in danger.

Hemophilia B also goes by two other names:

* Christmas Disease, named after Steven Christmas, a Canadian who in 1952 was the first person to be diagnosed with this distinct form of hemophilia and
* Factor IX deficiency hemophilia, because Factor 9 (written Factor IX) is the blood protein which is lacking and whose absence slows down the normal clotting process.

How common is hemophilia?

Both hemophilia A and B are very rare disorders. Hemophilia A affects fewer than 1 in 10,000 people. Hemophilia B is even less common, affecting approximately 1 in 50,000 people .

Who is affected by hemophilia?

Hemophilia affects people of all races, colours and ethnic origins.

The most severe forms of hemophilia affect almost only males. Females can be seriously affected only if the father is a hemophiliac and the mother is a carrier. This is extremely rare.

However, many women who are carriers have symptoms of mild hemophilia. It is only now fully recognized the importance of bleeding in carriers and the degree to which these symptoms affect a woman's quality of life.

As hemophilia is an hereditary disorder, people are affected at birth. This means that children can have hemophilia. In fact, hemophilia is often diagnosed in the first year of life.

CLASSIFICATION      LEVEL OF FACTOR VIII
OR IX IN THE BLOOD
Severe      Less than 1% of normal
Moderate      1 to 5% of normal
Mild      5 to 30% of normal

Severe hemophiliacs with less than 1% of the normal level of Factor VIII or IX in the blood have hemorrhages several times a month. There is often no obvious cause for the bleeding - it just happens.

Moderate hemophiliacs bleed less often. Their hemorrhages are often the result of minor trauma, such as a sports injury.

Mild hemophiliacs have even fewer hemorrhages. They may be aware of their bleeding problem only in the case of surgery, a tooth extraction or a serious injury. Women with mild hemophilia may bleed more during menstruation (periods).
As with all things there are exceptions but these are not the rule.

Moving on from my last chat

2008-11-25T19:16:00.001+02:00

Need that shock to get started , caffeine free coffee, caffeine is a diuretic and quite toxic for some one with adrenaline problems and a dicey liver.
I must update my photo, I do smile but hate being photographed.
Well where was I, 1982 December.
My mother's family, the Willhemse's, where a very social and tightly knit group, with 18 brothers and sisters, numerous other relatives the old generation(my mother's) could easily fill any hall and this they loved to do, always a birthday or a marriage and the then occasional funeral. Sadly there are a lot more funerals now as they succumb to old age and illness. So believe me when I say it was a whirl of faces and places. Now I have hundreds of cousins, vastly ranging in age, most of them I had never met, I didn't even know that most of them existed. A good part probably 80% don't even speak more than a few words of English. I had stopped speaking Afrikaans when I was 4 or 5. But still understood a fair bit of the more simple parts, so we got by when it came to chatting. Of course I drifted more towards the relatives more in my age group which is natural. This is when I was introduced to boere musik, sokkie sokkie, lang arem dancing, now that was a very different type of night life I had never experienced before.
The boere dans jol.
Well a group of the younger cousins had decided that it was time to get down and really party, it was after all Christmas time. So now they are going to take me to disco's Afrikaner style. So first thing was to buy the supplies for the night. Half a lamb , couple bags of Braai wood (Barbeque),a few kilos of wors, salads ,rolls and finally the dop. Drink was cheap then , beers came in quarts , pints and dumpies.Two dozen dumpies cost the equivalent of about £3. about $6, quarts about 40 pence. But that was only the refreshers the serious drinkers drank Brandy. A litre bottle of Brandy and a 2 litre coke for each. Cost, a very cheap £2 about $4.
In those days you paid for the entertainment and refreshments ,whether you brought your own ,or bought inside was optional. It still is in some places. Towards the end of the evening there is the fire, more drinking and hot braaied meat.

So that in itself was different .My first South African disco was pure cultural shock. Nothing too untoward about the club, large roomy dance floor, disco lights ,band stage and DJ boothe. But there was something covering the dance floor, sawdust. That was new. The place was packed, whole families where there, from Granny right down to baby on the breast, that was new. The music was already playing , it was 5 in the afternoon, that's new, let the party begin. Now Boere musik is a gendre of it's own, based on traditional music the bands consist of a hand concertina player, drummer, violin and a larger piano accordion and of course the mouth organ. Sometimes sad but more often played at a cracking lively pace. It can't be described it must be experienced, the closest I can describe it is a very fast Kentucky Blue grass rhythm.
Now came the eye opener, this is disco Sa style. Already there was a packed dance floor and something strange was happening ,yes people were dancing to this music. A mass of twirling ,spinning bodies, the saw dust was to allow the sliding of the shuffle glide which was part of the dance steps. The dance in itself is a combination of two step, foxtrot and waltz with a few little fancy twists and changes of foot position thrown in. The dancers bodies are held straight the man or leader holds the waist of their partner with the right hand, the left arm is raised and held straight and what looked like a thumb lock (to me) is applied by the lady, or the follower's ,right hand ,the left hand holding onto the right shoulder. An off you go, I never experienced anything like it before , I don't know if I got more tired from the dancing or my clumsy attempts to keep up with and in step with my partners and the laughter it brought on . Myself and theirs. My first night out with my cousins is etched in my memory so deeply that I can hear the music and see all their faces as if it is happening now. But 26 years have passed. All in all it was a night that didn't end for months. One party after another. But was muted by my ex wife not being there. At the time I was still married and had only been apart from her a few days , the fall came later. So how did the night end. We all decided to see the dawn in on the beach, so we headed for the Strand (a Towns name which also means beach.) We walked the shore and watched the bright South African sun come up, we inhaled the smells of the sea , that mixture of salt and rotting seaweed ,dampness tinctured with a slight acidness of air not totally polluted by our urban environment. Then we skinny dipped , with the sounds of the gulls, laughter and crashing waves, all the while the music and the sights and smells of the night still echoing.
I am not dead yet so this is still a work in progress, I have had a fortunate life and it goes on still. There will be more thoughts and reflections on today , my past and the future. Just to be able to do this and put down in words and share it, makes me so much more fortunate. For when life passes my memories and thoughts will fleetingly and ghostly remain after. In you the reader.

Need to chat

2008-11-18T19:59:00.001+02:00

My posting hasn't been pleasant reading lately , for that I'm sorry.It isn't easy being sick yet not sick for 24/7. Those who have had the virus will understand. What has been particularly difficult for me is that being a person who usually fights his way through a health problem I have hit a wall that for the moment I can't get over or round.
I don't want to list the side affects , enough already have them, just that it is nasty at the moment. You know you get to a stage in this illness when you are almost forced into reclusiveness. If you are well enough to go out and about you should be well enough to work. So you sit around the house, or lay, trying to feel well enough to do something, anything. But it doesn't happen, you have very few visitors , mainly because they are working or going about their normal daily business. Also as nothing is going on or different in your life there isn't much to talk about. All you have left is your illness. This doesn't happen over night, I have been struggling with the acute phase and it's unpleasant sides for a decade now. At first you still can manage to get by but slowly you become drained. Physically and emotionally. I am now in that state where I couldn't be bothered even to make the effort. Oh I make the motions of trying but the spirit has flown. The last few weeks have been hard, my liver has enlarged and even a slice of bread is too much volume for my stomach and I bloat and feel nausea. Take Sunday last , I had a very light lunch, Sweet melon, slice of ham and some fresh fruit. I couldn't handle it. I swelled up like a blimp, it felt as if my stomach was climbing into my lungs. My only resource is to take a few sleeping tablets and sleep until I feel better. I joke about it but it is only sarcasm on my part. Enough let's go on a trip into my past.

I'm South African as you know, but only really came home when I was 26. I arrived in Cape town around the Christmas period of 1982. I was picked up by my family from Cape town airport early in the morning . It was already warm by 9am, easily 28c. The environment was completely different from the gloomy British shores. The accents although not unfamiliar not one that I had become used to. Immediately the pace of life had changed, customs were different and the smells and colours alive and vibrant.
For a few days I was going to stay by an Aunts house , though passed on now, always my favourite relative we had a bond that went back to my birth. If I had a second mother it was my aunt Dorothy. Now that was a busy first day, I have a huge family in Capetown ( mum was one of 19 surviving children, dad one of 11) ,a continuing round of hugs and kisses. This was all that I did for the first 3 days, meet family. But everything was dampened by the fact that I was separated from my wife , we divorced about 3 years later, the last day I saw her was 2 December 1982 , never to see her again. I did love her deeply and what went wrong with the marriage I still am not really sure of. Anyhow it was my fault more or less so I will not drag that part of my life into the story.I have moved on in life now and have had a good one.
There where a few things that immediately struck me, one the people were very friendly and polite. only to willing to help.Secondly the place was clean and very bright with flowers and parks. Thirdly the highest buildings generally were only 3 stories high so you weren't closed in, everything was and felt open. Also the food tasted different, I don't mean the cooking just the basic taste of each food article.
Every one cooked, food was an entertainment, you could eat out at the finest restaurants for basically nothing. The scenery was free and at the time the natural beauty was unspoiled by development. That unfortunately is no longer the case, no longer is there unobstructed views. You have very limited access to most areas as the rights to them are now owned. Eating out is on the dollar value so has become too expensive for the locals and anyhow the meals taste crap, what was good wholesome home style cooking has become pieces of art looking and tasting like a piece of artwork with the price being set as such. Tourism does that, also tourist tend to eat what they know and want to eat the pieces of cardboard they are used to plus the pretty picture. Yes they have money, but really they never ever really experience the life around them as a person , just a walking bank.

If anyone I know ever visits here I will take them to see the sights , but the best places are away from the usual tourist pullers and the real South Africa is where us folks live and play, not the rich, they like to be seen doing things we just like doing things, understand, the ordinary daily life way, which is being gradually eroded and sold off for tourism.
Capetown is not the picture you see now days. It is built up, the foreshore is not open , views are limited due to the over building allowed and restaurants are some of the highest priced(over priced) places in the world. There are no natural beaches left within 50 km of where I stay they are all developed. Sad but true, still they are still worth seeing . I diverge from my thoughts and will come back to my past in my next note.

A friends garden with a wild beast looking for a free lunch.
This is where I STAY !!!!!

Just thinking out loud

2008-11-17T19:35:00.001+02:00

Responsibility, how I wish I could just ignore that word. To be free of it's yoke, to just be able to live and enjoy each day. When did life become a drag and each day a burden ,days are something to just get through now. Success being measured in just reaching the next day. It seems such a long time ago that I looked forward to each day. I enjoyed my work,I had plans which I carried out and received a sense of achievement.

I know that things are beginning to get on top of me. I have become even more aggressive, I cannot function amongst people at all. I need space......I need to drop my responsibilities and just disappear for a short while,become someone new. Alright one with a few health problems but someone that doesn't necessarily need to deal with it everyday, going with the flow. I would like to do what I always used too , just up and wonder off,rucksack, one change of clothes a few bits and bobs and an active passport. I left that all behind 22 years ago when I remarried, now everything is planned around others. Don't get me wrong I love my family but for a few years now I feel trapped.

What always interested me wasn't interaction with people but being able to watch and observe them. To see how they differed , lived and enjoyed life and got on with their everyday things. To sit and take in the different smells, sounds and colours of a place. It wasn't the getting there that I liked , because it never mattered where there was, it was the being there.
The accumulation of things has never been a big deal for me,I have never had the need to measure myself against another. Due to my health it was unimportant, with a family though you do tend to accumulate things, I was fortunate in the need to have to have a fall back kitty stashed within range. But that isn't in -exhaustible and probably will run out soon. If I was alone it wouldn't matter to me, but I'm not and will never forget that. I haven't a fear of death, it is my constant companion and I've shaken death's hand on a few occasions. So far it has been flying visits but my feeling is that soon enough it will become, party full time.

I am not depressed funny enough, I just feel a sense of being let down. I don't really know why.I haven't been let down by anyone. I'm not gregarious so the few friends I have on or off line have never let me down . Maybe it is that I feel that I have let myself down, but looking back I have done better than most and more than a lot of others. So it isn't that.I guess it is that my feeling is one of knowing that no matter if I beat the Hep C virus or not,I will not recover from the damage that has been done. My cirrhosis damage isn't reversible and it is very close to the end stages, I've yet to meet or have heard of anyone that has reversed the damage when the biggest part of their liver is totally blocked.Something must break eventually and my haemophilia will do the rest. Sad, yes, but not a thing of personal choice. As to choice, I have decided that in the end days I will not try to battle against things and will go untouched by any more medical interventions. I would like to be with my family , have a pleasant and fun day then .......

Still it isn't now and maybe not in the near future, but eventually will be there for me, as it is for all of us. I just prefer ,if given the chance, to go out laughing than to be miserable and tired of life. This is a personal reflection on my life. I hope it doesn't drag a reader down but you cannot ,not, have these moments.....

Alright so some are disgusted! Personally I think we all can be too serious all the time or funny but not having fun. Lovely that, nice shape ,small waist yep.....

A few reflective moments

2008-11-11T19:35:00.001+02:00

Don't throw out the baby with the dish water.
Well I have successfully managed to remain ill for a month now. I tried to push through how ill I was feeling and worked harder than was actually good for me. The body said no and decided to go on strike. At first it was a go slower and then it became an all out stoppage. Well it looks like it is going to be a lean Christmas in my house hold this year. It has been awhile and I don't think my children have ever had a Christmas in which they weren't spoiled. It will not be a soup kitchen lunch but it will be a lot more subdued. I myself am not too bothered , I've had many festive times in hospital or in pain so if I can be pain free and at home will be more than satisfied.

I no longer post on the forums about my illnesses. I have been at it to long and much prefer to give support to others. I get more from the comradeship than any information that may be given to me. I am informed up to my eyeballs and need a rest from that side for now. I get regular feeds from a lot of up to date sources , so keep in the link so to speak. Actually it seems to me a bit of a lull going on in the medical field on Hep C, though one thing does strike me. Would it be in the interest of the drug companies , if there was a definite cure, for them to release that information . Or would it be more financially rewarding for them to market an "almost a cure" drug. I guess an immuniser against hep c would be only a last case scenario for them if they were being overtaken in sales by competitors. Ha conspiracy theories.........

Another thought, it seems strange that financial aid is not freely given to Hcv sufferers. It becomes almost a case of having to beg for everything, treatment, sick pay, living and mobility allowances. Even the right to work and earn a living wage isn't assisted by governments. How can the sick compete one on one with the healthy, only on the most menial of jobs when no one else wants them. Even in South Africa it is no different, too sick to work , you have to be completely destitute and have nothing before you might get some sort of assistance and that isn't guaranteed. Often the processing of claims out lasts the life of those asking for the aid. Millions are directed here in grants and aid but most of the funds are absorbed in unnecessary paperwork and far too over paid and over staffed administration. There seems to always be a conference in some 5 star hotel or some ridiculously expensive conference centre for them to attend. To make matters worse is they have to have committees to decide on who and what the attendees will stand for. Take HIV for example, lot of fat(really fat)cats are managing it over here for the government. Millions are spent on committees and even more on clinics , but where are the anti-retrovirals , they are sitting in warehouses stock piled as no committee has decided about what the hand out procedure will be who will qualify and who will staff the unused clinics. Millions have been spent on health workers for rural hand outs but after the initial pay has been received the workers disappear, clinics looted and left un-staffed and in disrepair. Often the heads of these clinics are illiterate and have no numerical skills so can only rely on cartoons of what needs to be done. For example and this isn't a housewives tale. A couple of years ago there was a massive hand out of condoms each condom being presented with an instruction leaflet. So people were employed to attach the condoms to the leaflet...Yes you guessed it , they were all stapled through the middle and attached that way to the leaflet. Government planning Africa style nogal.

So I really wish that the virus I contracted was socially accepted, well financed, government supported and had a lot of news value. Maybe then I wouldn't have the additional worries of having to pay for my treatment, work so that I can live and support my family without the thought of being a burden to some one. Adapting to the damage my body sustained is possible but for that I will need time and that time will need financial aid. My government have very short term plans, for when I can no longer work I cannot pass on my skills to the younger generations and by having to push myself as hard as I do, the time for my having to give up work is advancing rapidly.

When the tiredness sets in.

2008-11-03T19:27:00.001+02:00

I thought for a long while now that when I first fell ill from the side affects of having Hep C that I had already felt the depths of tiredness. In those days it was a physical tiredness, one that with a little rest you recovered from. But indeed it is far more than that, it is a pervasive thing it fills all your moments. It even seeps into your private thoughts, everything is an effort. You even stop wanting to get better, you just want it to end , one way or another.
I am now reduced to the automatic, wake up, wash, eat so I can take my pills, drive to work. Fight through the day waiting for the working day to end. Shower and change on arrival at home, eat, receive and send mail, take my evening pills. Look at TV , not absorbing what is on the screen. Go to bed sleep for an hour and then wide awake body screaming for sleep ,mind in a place of it's own. Socially just managing to show up but with no presence, just quietly melting in the back ground. I have ceased to exist.

Tracy now worries that I might just end it all, but it is unlikely. Not believing in a life after death I know that this is all there is and that there is still beauty in the world , although it's aspect has significantly reduced for me. I have resigned myself to the fate that I had fought for five years, the virus has won it's fight and I haven't the will to try again to beat it. Everything has the right to life and only the fittest survive.So if in my body the virus is fitter then so be it.It after all has the same creator as I have and the design for life is not mine to argue with.
Since my last relapse I have searched and read about the latest research and developments in the fight for a cure, there is no wonder drug just another hand of cards to be played in the game and you must just accept the hand that is dealt you.

Yes this is a very low time in my life, I am tired. I have become weak and I feel even amongst others who are suffering , very alone. Slowly my life is melting in a way that I cannot reshape into any resemblance of normality. Sadness is too light a word, grief in the loss of what was never a perfect life is all that is left. I guess that I may be very nearly at the bottom of my well of life and it is very dark and empty. I cannot see a light up above. Maybe tomorrow, maybe never........................................

Damn traffic circle . Where do you exit?

2008-09-17T19:31:00.001+02:00

It seems that my life in the last month has centred around my bed, chair or computer area. Recently I heard a quote that went basically along these lines."Beauty is viewed from within, for beauty to be perceived it must be held within the perceiver,Without the perceiver holding inside their being the perception of beauty it can hold no significance." I never ever thought of it that way before, I have an inner beauty ,it is in stark contrast to my exterior. I truly don't know what to do with my life at this very moment. It has been so long since I have been at peace with myself , let alone with the world. This Hep C virus has taken and shaped my last ten years.I have fought it for what seems forever and after my last pcr result showing I once again relapsed, feel let down.I expected it but it wasn't any easier to live with. I have been battling the active side effects of chronic hepatitis for more than eight years, all that I have gained is a greater knowledge of the illness, enough to write a book. But I am feeling defeated, never the optimist I always had humour and hope to sustain me , even hope has deserted me now.
I needed to be actively doing something to improve my position with my fight to control the disease, that has now been taken from me and I feel destroyed, I cannot re-treat I am older but back where I started my first fight. My option now isn't an option, it is only one of waiting and surviving long enough for new treatments to be made available.
For the record this is a true account of my present symptoms of viral attack.
Muscle wastage, my muscles have no definition any more I barely have the strength to move let alone anything else.The rosy ,round patches, are now raised more distinct and itch ferociously. The constant dull headache has become an incessant throb and heaviness in the forehead. Night sweats are regular and more copious. My mucous membranes seem to have dried up and I barely make any saliva, my eyes are dry and it feels raspy when I blink. Crocodile skin is now alligator skin with big dry flaky patches. All my nails are rotten and cracking from the nail bed upwards. Every one of my joints ache and give pain. Inside I have a sense of panic and agitation as if I am on edge all the time. Right quadrant pain is excruciating, I feel constantly bloated. Fluid retention is becoming extreme ,so is the dark foul smelling watery mud that my bowls evacuate. I have constant reflux and loss of appetite . I am gaining weight and it isn't from any food source, I barely eat and when I do eat I suffer for a long time. I cannot take being with or around people in any situation and have no ability or the will to make decisions. I have lost any drive I had , find it almost impossible to maintain any ability to sustain any prolonged exertion. I find myself unable to cope with work and the stress is now coming back to bite me and those I care for.
This is very depressing and so on this note will end my post for now.

I didn't fail!

2008-08-12T21:37:00.001+02:00

Well I fought one hell of a fight with my last treatment fighting Hcv. It took a lot out of me , physically and financially. Both can be recouped but at what cost. if re-treating one more time was elective I would bail right this minute but I have to treat.Three years older and still back where I started. I relapsed once again. My viral count is only1.8 million but one thing I think it shows is that the virus I am carrying maybe g2 but it is a strong little bastard. I did everything by the book and kept too the protocol.
I can honestly say that I am nowhere near being prepared for this next fight. I am weak and already having nasty side affects related to the virus. The medical costs not covered by my health insurance has mostly wiped out my cash reserves and if anything I am less able to maintain the ability to work even for short periods.

My liver has lasted fairly well and for the most part my blood results are not to bad, not good mind,but not to much off normal which is a plus. What is giving me grief is my joints and muscles, the virus has now began to attack them and I am stiffening up and have a fair amount of discomfort. Tracy, my wife, tells me I have aged the last 2 months . Stooped and round shouldered, I have trouble standing after sitting and due to my repaired pelvis I sometimes find it hard to balance. Most people can stand and balance sub consciously, I have to actually think and arrange my position or I just fall flat on my face.
The next treatment regimen has already been planned, the health providers are still to be motivated to re-treat but they can't really refuse as I did respond to treatment and did clear. I must be truthful and say that I am not looking forward foranother year and a half or two years of popping pills and jabbing myself, headaches and itching, the tiredness ever present. How I am going to manage the depression I went through the last two times I don't know nor the aggression which comes with it. Hopefully I have got friends who can motivate and help me by just being there for a chat on the forums. It is hard to be so far away from a community of people who you can only have a virtual relationship with who share what you are going through. It is very lonely. Well it is almost spring and with spring comes new life, from South Africa I wish you all continued health and success in your trials.

An ordinary day

2008-07-10T19:08:00.001+02:00

Forget the Middle east look where South Africa is sitting.Haven't done much of anything these last few days, rain and a cold bitter wind has cut right to the bone.I've been battling with a pesky cold for around a month now but at last it seems to be going away. Work is becoming easier to handle but will admit to taking today off.Gone are the days where I had it in me to push past the aches and pains and will admit to being exhausted last night on coming home,tx left me with complaining joints and muscles and if I do too much I know straight away. Also if I get too physical I start having cramps and supplements aren't the fix. I try to keep my electrolytes in balance by diet but I am finding it harder to do in winter. I wonder why. Today I also feel a little down, nothing major just a slight feeling of chasing my own tail. World economy has hit South Africa hard and the amount of people unable to cope on their wages is rising fast. The majority are being paid bread line salaries and food inflation leaves them unable to subsist. I have never seen as many beggars or people on the street as there is today. Crime is rampant, gun related robberies are now the usual and fraud a daily occurrence. Not small frauds but big national companies. Now my beloved old car has been abused by some little idiot throwing a stone at my windscreen, protesting about the rise in prices, as if I have anything to do with it. Still what comes round goes round, the wheel will turn and again .

My brother after hiccups in getting started is finally on week 3 of his hep c treatment, luckily still no measurable liver damage shows on his tests. 45 weeks to go and he is already complaining,
sympathy is what floats his boat and he is recruiting a crew. I'll help him out but he will receive no sympathy from me, he must just get on with it. He has been on pension for about 25 years and could have quite easily have got himself fixed up but why should he . I just get annoyed that he never puts in the effort at least by trying to get himself sorted.

It is getting close to the time of my Pcr, I hope to show svr but will not anticipate the result. Today is the one that matters and what ever the outcome it will be faced in it's own due way. I still haven't made any long term plans, which is not my usual way, but for now I think that staying the course is enough and when it is time I will go on with what ever I feel needs doing. But I will say that a change of work, something completely different would be nice. It doesn't even have to be challenging , just enjoyable and something to look forward to doing. .

Well that was a little natter and has been very mundane but it is good to have these mundane times, makes the interesting one all the better.

Well it is winter in South Africa.

2008-06-22T10:29:00.001+02:00

Someday's it starts off like this, you get that sickening feeling of panic.This is one thing that had great influence on me when I was on treatment. Just the simplest of tasks seems a matter of life or death. I wouldn't say that it is treatment related, it actually started a few years before my first treatment drugs and continues, though intermittently, today.I found no solution to it and just basically hid away, shouldering no responsibility by taking no action. Then a feeling of guilt arrives, I feel lazy, not that it is a symptom of something else.
Guilt is one feeling that most heppers carry with them,you must of been responsible for the disease you have caught.There must be a reason why you of all people have caught it, in reality it doesn't matter. Maybe in a way of trying to prevent others from transmission by the same way, but knowledge can only be passed on by those who have learned the hard way. GUILT SOLVES NOTHING.
Treatment or the attempt at treatment does. Treatment isn't for the sake of killing the virus.It is for the sake of life itself, death will be a fact in everyone's life it is the nature of things. But the manner and to some respect the time of death can be influenced by taking some form of positive action. Positivity to any adversity doesn't make things easier but does make it more achievable. I've done 3 treatments now, am I clear I am not positive about that, but one thing that I am, is that I shall and will enjoy my life. It is all that matters in reality, wealth and fame, social position doesn't elevate you above others when it comes to the basic. Too live your life, too take a sense of being you ,along with life , is all important. Happiness is the only satisfying thing you can take from life. What gives or brings you happiness is the goal too achieve. You can't buy what death takes away.Fame will not bring you peace in life and social position doesn't matter one bit when your dead. So live .love and settle for happiness, be satisfied and less stressed about what you think other people think. They have their own burdens and are they happy.

Early on my journey.

2008-06-12T19:53:00.001+02:00

Children can be naughty. I was as a child,was it intentional?Yes some times.Was it done to cause harm?I don't think that it was, but it wasn't right, now or then. Confession time.

I was at the age of 14 a very successful shop lifter,I was never caught and only the feeling of guilt stopped me from doing it till I was caught. Why did I do it? The first time was because of a dare, I ripped off about 5 Girlie magazines from a news agents, it was dead easy and I never even kept them ,but gave them away. Too a certain group of friends I became a hero of sorts, liberating what ever was desired, often by very risky means. But more often by just walking into a place and then just simply walking directly out. I can't remember keeping any of it except for a pair of shoes once and I really needed shoes. When you are walking around in a pair of shoes ,which basically had cardboard boxes for soles , were 2 sizes too small and no toes left you didn't feel bad by taking them. I make no excuses , it was wrong, it didn't last long, about 3-4 months and I really deserved to be caught and punished.

Poverty in the late 60's and early 70's was very real. It isn't much different today, maybe only the description has changed. I can only have a guess of how it was with others , but will attempt to describe how it was with me. In a lot of respects my father was not a great planner and was very impulsive. At the ripe old age of 15 , he and a friend stole a milk van and took it for a joy ride, crashed it and got nicked for doing so. Given a choice by the magistrate of detention or joining the armed forces , he chose too become a junior seaman. I think it was a great adventure for him, but it didn't prepare him for a life after the navy, Maybe it didn't matter and eventually when it did was very hard to get right. I was 13 when my life was altered completely and the hard times occurred.Mum, who came from a semi affluent family, was to really take the hard times very badly, appearances mattered to her. It is hard to explain and will I maybe do it later, I must think on it a bit. I've already discussed how I ended up in the UK earlier on in this blog. So I shall get on with things.

It was early in the winter of 67 when the family crash landed in Bristol. Not having a job or any real source of income after the navy, also no savings, dad had to start from scratch. Managing to get a grant to become a qualified mason, also finding out that although he had been registered for a council house since the age of 21 he was low down on the waiting list. There was few choices back then, options were that us kids could go into temporary foster homes and my parents could then afford to find a place on welfare. Not an option mum was willing to take. Pride also prevented her from returning too South Africa and using our extensive family and family connections to get on with life.

No place to stay, no real income and no savings. With some manipulation and fiddling dad managed to get a semi derelict house in one of the older parts of Bristol. December 67. we moved in, as such as moving in rather than squatting you can call it. Our worldly goods consisted of light weight tropical clothes. No house hold goods, no bedding just nothing. There was a bit of junk left by the previous occupiers. A tatty, pissed on mattress, a couple of damp and broken sofas , a couple of thread bare filthy curtains and that was it. It was the kindness of people that we didn't know that got us through the first few days.I've already mentioned them. For the first week we slept on the mattress , with most of our clothes on, curtains for bed clothes. One second hand pot and no stove to cook on. The wiring was shot and the gas was disconnected so that wasn't available. Financially all that could be bought was, soaps and cleaning gear, a very few food groceries and a small bag of coal. Everything for months was done in one room. Wood from the floorboards and the junk in the back garden , cooked the food and kept us warm. Some days there was no food at all, we drank tea, no milk and a very small amount of sugar. By going to college by day, working by night, mum getting a low paid job a small income came in. Eventually after a few months , child allowances and some other monies owed by the navy also arrived , so we got through that first winter.

Early on my journey cont.

2008-06-12T19:52:00.001+02:00

It is a shame with age you lose that innocence of childhood. That belief in the world where everything is real, the impossible possible and that enthusiasm for new things a daily occurrence.
That was the reality of life for me after that first winter as a child. I stopped being a child and lost my belief. Certain responsibilities were put on me, I had to do the shopping , pay the accounts and cook the food. I also had to look after my brothers, due household chores, go to school and do part time jobs to earn money which my parents took so that there was money in the house. No real big deal for me. It was all part of life. For the next 4 -5 years that was it. Clothes were second hand or even older, school uniforms out and you got by on what there was. We were clean if not threadbare, my younger brothers would tend to come first for most things, clothes, toys, shoes you name it. It wasn't strange for me it was just how I was raised with that sense of responsibility for the family from a very early age. Read back in my blog, the early days. It was hard at the time, made fun of by kids of my area, looked down on as being a tramp it was lucky that I never developed a hatred and a complex over things in those days. What I did have was a great sadness and a feeling of being alone in the world. This hasn't changed with age, I trust and rely only on myself and plan for all eventualities. I can function quite happily totally alone.

It can bring a sense of shame being poor. You can't join in on school trips, you don't go places because there isn't the money. Christmas wasn't a time of excitement nor birthdays, no presents and no special treats, it was just another day. My school had a uniform dress code , the only thing I possessed was the tie and would stick out like a sore thumb. I had put on that growth spurt at 14 eventually reaching my 6 ft 3 ins in height. Also I started getting fat, eating was life's only pleasure and by then I could cook quite well. ( Today cook even better than most professionals, though I consider myself fat , I am not, just have a fat image of myself. I am a big guy with a big frame and weigh in at a reasonable weight for my build.) I got used to being on my own with no friends from school. Even today I make very few friends, I prefer my own company. It is easier that way. One thing I can say is that I learned to survive back then, self reliance, what is truly important in life and that money and appearance is not what makes a person. It gave me understanding and compassion for others, satisfaction in what you have and the ability to achieve things by effort and not being afraid of failing. But in life you learn that people are judgemental and they see you as what is outside and not who you are......I am completely different than who I look like, I tend to frighten people , big and unfortunately aggressive looking. But in fact I am not aggressive, I have nothing but a sense of humour and the willingness to help others. I am what I am not what you see.

Where the wind blows

2008-06-02T20:36:00.001+02:00

There isn't a lot happening on the hepatitis front at the moment. I am getting progressively stronger, my head is clear and tiredness not so acute. Still not sure if I will achieve svr but will find out in July. I still have short periods of depression and the fluid retention is still problematical, right upper quadrant pain has reverted to it's usual grumbling, present but bearable. Bleed wise nothing major just the usual inconveniences. I can live with the present state of my health. I, in common with many heppers, have been left with the question of what direction should I put my life. I seem to lack the want or need to do anything, is it depression or just an uncertainty of doing or planning something which I may not be able to follow through on I don't know. But there is no rush and the path is a slow meander.
I want to talk about those around me who have been affected by my illness. Only now can I take a step back and look how changes have occurred in them. Having few friends but a lot of acquaintances I can see those who have actually been there for support. Those who's association has been just for their benefit and those who run, scared of being asked for help.

Family wise in some ways I am disappointed but not surprised.
Since my mothers death last year not one of my uncles or aunts, and I have 20 +,have been bothered to make contact and have no time to chat if I contact them. Well sod them I asked for nothing and expect nothing of them. My brother and I have become closer , though separated by distance. My daughters are being teenagers and need a real kick in the pants, they will have too learn the hard way as I have nothing to teach them of life, they know it all. My wife has had it worse than me. It affects her greatly and has looked for any way to support me.She worries that I am not letting her know the full truth and is always panicking at every little sign of illness on my part. I wish she would just relax and go with the flow. Love doesn't describe what she has for me and I fear that if it is my time she will just give up life. She deserves more than me. But at least she has found her faith and draws strength from it.

It is not surprising the racial conflicts that have occurred here lately. It isn't driven by race or fear truthfully, but by jealousy and greed. Poverty isn't a functional excuse for the deaths and hurts inflicted. Poverty is not an infliction it is a description and is only a comparison used to describe a difference in life styles. What is poverty to some may be wealth else where. Personal respect for others and being happy with what you have makes a perfect life. I was once asked how I could give a certain guy a mouthful of his own arse. I should respect him because he was a multi millionaire. My reply was I wasn't impressed by other peoples money it didn't impress me, it only impressed me if it was in my account. He isn't superior to me but was less than me by having no respect for another. Care, love, respect, regard and patience shown to others are what is deserving of respect.

I am getting that feeling of delving in my past again so maybe it is time for a walk along my path some time soon. I have many stories.

My thoughts on life with Hcv.

2008-05-21T19:08:00.001+02:00

A thought has crossed my mind often lately.Well more of a realisation of what I already knew and one that those who know me ,often don't accept. The various hepatitis virus I have caught at one time or another has left some permanent affects and no matter how much or how well I have responded to fighting it will always be there. Treatment of Hepatitis is not a cure , it is a prevention of escalation. The effects of the virus will in some aspects always remain. What is done is done. I agree there is an easing of of most of the systems damaged, but it isn't a cure, only the body can do the repairs necessary and quite often it is not able to.

I think that in someway, we go into treatment with an expectation of being restored.For those of us who have been chronic for a long time we may have unfortunately been damaged by the virus. We have had symptoms for years, often just ignored as being just a weakness in ones self and we have lived around them, getting used to it. We no longer know what it was to feel "NORMAL" as in life with out this bug at all. I think our expectations of Tx is far more than what will ever be achieved in truth. It is hard for those around us to realise that even with svr we may not be able to be who we were . A cure, after all, is an end to the illness ,miracles aside ,I have the scars.
For me I have had enough of treatments. I am tired of having to recover from one thing or another. I have got into the habit of excuses and saying sorry for the inadequacies in my health. It is not going to improve, in time if it doesn't get worse I will be able to adjust and regain a sense of normalcy. Last week I felt good to go , just a little too much exertion on the weekend and it was all backwards again. Tonight I feel ok ,tomorrow who knows.
Life is fickle and you can't always plan or adjust for it. You soon find out that you are not even an itch worth scratching by the government. These people who will not think twice of jailing you for not paying taxes are the same ones who don't know who you are if you need something in return.
Believe me though, I do feel treatment is worth it, but the support of those being treated needs a serious look at by the powers that be. It is a fight from beginning to the end, it starts with the testing, obtaining treatment and sustaining treatment. You can't rest and just be ill, hcv is the quiet illness, those who haven' t actually had it have no feeling for what it is. So how can a form processor do anything but process and treat you as if your out to con some one.Job security and financial worries come with the illness, the likely out come of this is not satisfaction of security but an anti -depressant pill. Laughable isn't it. Yes there is truth in the saying there are only two things in life you can't cheat, Death and the tax man.The taxman even taxes you in death so he has the final say.

Things Change but stay the same.

2008-05-19T19:14:00.001+02:00

It doesn't seem to matter where you go or what you do, history is on a continuous loop.We return unceasingly to the beginning and repeat the events of the past in one form or the other.Born too a world of war, turmoil and natural disasters it stays the same just those playing the game change. What would be for me an ideal world, let me see if I can put it into words.
If we put more value on another's life than we do our own, know and give respect to everything and every one ,show and appreciate what we have would be a start.If we could use rather than abuse life in all it's forms and facets. Prevent what was a jewel of creation in the beginning ,becoming the dustbin of mankind.The human race is crawling deep into that dustbin and what is worse fighting for the few scraps that linger in the open.
If only the people of the world could unite and deal with problems together, instead of national wealth ,have no wealth , just a "common wealth". To be a world of people and not races or creeds. To be amongst equals as an equal ,to be able to help and support each other without a thought of some of return. If food and the needs of all were paramount rather than having more and possessing more. If you look in an atlas of the world, man has made boundaries between nations, little lines. I've yet to see on my travels the need of nature for the lines ,otherwise mother earth would have thought of it before we were created by her. I think of the world and I wonder what would it have been if the only boundaries were those of earth , wind and fire.

If it's true that we are here to help others, then what exactly are the OTHERS here for?

Low tide

2008-05-11T17:16:00.001+02:00

Well today is the real first sign of winter being on it's way in the Western Cape. Cold and wet, lovely stuff, my province is water poor. A winter rainfall area , we look forward in someway to the rain. Health wise it has improved, not greatly but enough to allow me to go back to work. There is a few things I have discovered whilst away from work. They are that for one I am not comfortable with not working, I miss putting in the long work days. I am not a natural father, a good provider maybe but not forgiving enough. The constant bickering of my two girls is worse than any side affects. My wife is far to easy going with them and raises no penalties when they do something out of line. They take advantage of it and it causes friction between us as I believe that there are certain expectations and rules in life. There is always cause and consequences, Tracy acts like their maid and bank ,rolled into one. she is doing them no favours and it cannot make up for what was lacking in her own child hood.
There are a few basic's that all should learn as children, truth, responsibility and the value of things. Cleanliness, apart from the personal hygiene side, how to wash, iron, sew and cook . How to budget and above all the realisation that somewhere down the line nothing comes without a payback. Reality is not on the agenda for the average kid today. Spoiled rotten, getting what they want and not with an education worth a beat it is all bright and rosy . My youngsters for example, the eldest has decided against my urging not too has decided that she doesn't want to learn this year and wants to earn some money. Ok nothing wrong with that, except the work part, four jobs and sacked four times, work experience non, money saved non. So it is time wasted and nothing gained. The youngest too clever by half, one of these kids who doesn't need to learn, so she thinks, passes all her subjects mainly A's. She could go far and have an easy life later on if she put in a little effort now but no chance of that. The problem with my daughters is that they are popular and pretty, up with fashion and always out there. There is always some clown who gives them what they want, but that isn't going to last forever. I object and Tracy bites me saying I must let them be kids.... I agree , kids they are so should be treated accordingly. They need to earn the breaks in life and not be expecting them to just come, only then will they learn value. This has been a bit of a little personal moan and venting, but it is my blog so I can. But there is a comparison to adults. You need to value and work for the breaks in life. If it comes to easy it generally has no personal worth and is not valued. Maegan,eldest

Maegan and Kaitlyne

Bend in the road

2008-05-03T12:28:00.001+02:00

As you walk generally you can see for a little distance ahead. But what when you have a little bend coming up. I have one at this moment in life. I have no view on what is coming up.
There are decisions that have to be made and I am undecided. The weariness that came with me for the last few months of my Hcv treatment is dissipating, though an insomniac I am feeling rested from the few minutes I sleep. What is happening is that I have got physically old these last 20 odd weeks. Also mentally old, I can no longer sustain the drive to push past all the ills and afflictions that I have to each day and have succumbed to defeat.A couple of years ago I would ignore any pain and just carry on the best I could, doing what ever to get through it. At this moment in time I fear for the coming days. I hurt , I can't handle it any more. By manipulating the drugs I take, my liver is now once again under control, the fluid retention due to albumin much less. But my right foot toe joints have been damaged, from the very fact that I ignored any pain and just dealt with the consequences at night when I can rest them. All my lower joints are damaged ,haemophilia does that to you. TX aggravates it.At last my employer is putting pressure on me, I DON'T BLAME HIM, he has been a good genuine friend(as opposed to a boss) and has put up with more than would be accepted from an employee by anyone.
Now I can come to that bend ahead. Will I ever get well enough to perform my duties at work again. Heading for 52 will I be able once again to find a job which I can physically handle. Not stupid, I have various qualifications and experiences in different fields. But all include a measure of physicality which is gradually growing harder for me to maintain. I don't seem to have many options, I can't go back and I can't stay where I am and there is no side ways diversions. There is two ways of looking at this point on the path. Is it the start of a new and different journey or is it just the end of my present one..... At least it isn't raining.
Whenever I feel blue, I start breathing again.

Well for one it's Friday.

2008-04-18T21:06:00.001+02:00

Not a lot happening at the moment. Nothing outstanding or remarkable has occurred. Been ill, but at least I'm getting a handle on events and have found ways to get on with things. Fluid retention has been a problem, giving the joints extra strain and causing painful but not dangerous bleeds. I, in myself, am feeling almost human again in the ways that count. After several tests and many visits to specialists I have a full understanding of how my health stands, what will be permanent and will advance and what can be done to prevent more damage so it is looking reasonable for me . All but the aches and pains in my feet I can deal with but I can honestly say a good pair of pain free feet would be delightful and improve my day.

I don't know if any one else has noticed but I am finding that ALL the hep c forums ,in all the countries, I visit on the net, have become more of open letter boxes. Seeking to be of some useful help and support to people , it is getting progressively harder to find an outlet for that need in me. What I am a bit surprised at is that there is not a realisation that only now are we getting a truer idea of actually what treatment does and what sort of success ratios are. Of course the number of relapses and those having to withdraw from treatment are increasing. More people are being treated, there is a set standard of treatment now, also there is more communication. So there will be a point when there will be a peak and then an average level of statistics be achieved on this treatment.

At least the numbers of new sufferers are tapering down, better education and screening has seen to that. But if the high cost of medical drugs and health providers is not handled carefully then it will grow again due to cost cutting and cheap fixes. The gradual decline in the growth of nations capital means is going to accelerate that shrinkage and will affect all treatments for all illness. Only so much money can be made available from anybody's budget, whether it is national or personal. It is unfortunate that those of us in the 40+ age group are the ones that will have to suffer the extremities of having HCV. But at least early detection and having a viable treatment option will make things better for our children.
I for one ,as the saying goes, have lived through interesting times.So much has changed and the speed of that changed increased unbelievably in my life time. Given the chance, what will be the changes in the next 20 years? I can see two paths open. Path one is one of harmony and international co-operation for the benefit of all. Path two is one of fiscal dominance and rape of the less fortunate nations, reliance on the quick buck and control of populations by withholding necessary raw materials far in excess to what is happening already. You can see that going on already with the price of oil. Wealth, as a monetary thing, has no value if you are basing what you have as debt owed. Countries do become bankrupt , then what value has that debt. The option then becomes war.......... Sorry,haven't the ability to express what I mean to say with some forcefulness. But we are all guilty of wanting more and getting it by doing less. When it comes down to it ,if we could get what we wanted without the effort it's bugger you mate and toughies. I feel a bunny hugger mood coming on so off to another discussion forum. Check you later.

The season changes

2008-04-06T18:35:00.001+02:00

At last the season changes. Autumn has finally arrived , for me a change from salads and fruits, to the more robust stews and puddings. Also the cooler weather has helped my swelling and water retention ,so for the moment my legs are comfortable and the bruising, heeling . From surfing around the net it seems that seasonal changes have great affects on heppers. It looks like personal relationships seem to go through a period of strain. Maybe it is due to a feeling of failed expectation ,that an improvement in the weather will lift everything and it doesn't.
Ah well why should anything be easy in life.?
I must be recovering because I spent Friday pruning and thinning a 3 meter ornamental cherry, tired Saturday and a bit sore today I have basically recovered and some of the branches were 8 inches thick. Looking up for me, now all I need is the bruising to clear and I'm on my way. Maybe from now on the line of domino's are stacked on top of each other and not side to side on edge. It will take more to start them falling.
I some times wonder if anyone even reads this but it doesn't matter I find it cathartic and a way to open up.
Any way 1/4 way through the year , it has been another non event so far but I am determined to achieve something before it ends.
In the 60's people took acid to make the world weird. Now the world is weird and people take Prozac to make it normal.

The final outcome.

2008-04-03T19:26:00.001+02:00

There is a definite inevitability that comes with life and that is you will die. March 31 was the 1 year anniversary of my mothers death, friend of my youngest daughter was killed on his motor bike only 16. A week ago today an old friend, my first in Sa, died from liver cancer and on the first Tracy's best friends father died also from liver cancer. Today was also an end of a small but well loved life, my cockatiel succumbed to old age at least 25 years old. My aunt had inherited it when her mum in law died. When her Grandson was born it was passed on to me 21 years ago, the boy had allergy problems. A small life but no less precious, it's as if part of my married life has ended. It moved in when I got married and has been in my home ever since. Other pets have come and gone but that bird seemed immortal . I don't feel much different than that bird, caged just as much by society and the necessities of making a living and supporting a family. One ability it had which I will never achieve was to sing the morning in and the day out every day of it's life. Different sounds for different occasions and moods, it never failed to sing. If we went out it recognised the sound of my car or our return and it would be a full blown welcoming performance. I will miss it badly.
My daughters are both in that stage of life when they are pushing the boundaries of what I find acceptable, a natural occurrence, but I DON'T BEND, the wife does, so I am now the hated one. Well if they have to learn the hard way then at least I have tried to make things right for them. They are, I supposed ,spoilt and have always got what they wanted and needed. Maybe not always branded as they would like they have got reasonable quality.
Parents are never winners, they kids are lucky not to have had to go through what I did and I wouldn't want them too. I would have done a good job of raising them if after we pass on they can look back and see what we have given them and can realise that they are loved. But for now I am the mean and nasty monster who only does good when the schist hits the fan, if that is what it takes to keep them safe and on the right path then where are those horns.

A moment in a day

2008-03-30T13:37:00.001+02:00

All of us could take a lesson from the weather. It pays no attention to criticism. Everyone knows how many seeds are in an apple, but only the creator knows how many apples are in a seed.
For me criticism is the building blocks of life. I can't just merrily go stepping along the path without some guidance. If I've lost direction or taken the wrong path it is better to find out during the journey',than at it's end. I fully intend to take the scenic route, little journeys off the path is allowed and welcomed. You can see in life what you have got, but if you don't make use of it you don't know what could be. To accumulate things and not memories cannot be all what life's about . I feel that what I am is inside with me, that goes with me always, the rubble of possessions is easily removed by others and is left behind when I pass.
Today was on the most part a good day. Still sick ,retaining fluids and in pain I went and cooked for 60 people at a church fete. My wife's church, I am not Christian, good deeds knows no religious dictates. The people enjoyed the food , alas I had to leave , the day was to hot and I am not strong enough, so after I cooked I cut and showered at home ,then slept for 2 hours. It is I'm afraid ,my deteriorating liver. Your liver change the sugars from your food into the sugars and proteins that your body can use as fuel. Mine, at times doesn't and the energy I need get's stored directly as fat, I run out of energy and basically run to a stop. That is what happened today, also ,as fat as I am, I forget to eat, Mae culpa, I never ate this morning. Strange that I can run myself down so fast but to put it back it takes much longer.

Tripping or stumbling down the path

2008-03-25T20:12:00.001+02:00

Well I haven't added any personal news for a while. I have finally completed treatment. Have been clear since 17 weeks. For a while it looked like I wouldn't do the full course. Financial politics again. But I have got past the tape. Financially and emotionally it has been a struggle. You tend to become very self centred on treatment. It becomes your prime focus in life, relationships do suffer, your support team get tired of the same old ,same old and start to loose interest or patience. A just get over it attitude starts surfacing, on TX you become hyper sensitive to the minutiae of social interaction and feel deserted by those you have the most regard for. I have had several treatments and medical procedures over the last few years, been ill for about 7, I have this horrible feeling of guilt that I drag around with me. The main thing is that there is not a shocking change in your health , it is so insidious that it is not noticed that you are ill by those you see regularly. Most of the anger on treatment is actually self hate, why can't you look sick, there are times that you need to be just simply loved, hugged and made to feel safe and wanted. Because it has been a long illness, these times are not noticed by those you hold in your heart of hearts, a feeling of rejection and anger starts building. Pure selfish anger is the result, not a feeling of hate ,but one of need and not being able to vocalise it. If you did it wouldn't fulfil the need that caused it, that is one of being loved, needed and wanted.Presents are better received when not asked for, some times you need that unasked for gift of feeling that you are still someone. That is how it is with me, I am not ashamed to say it I can cope on my own, but there is a big difference in being able to cope and one of being part of some thing. Love you all ,even those who dislike me XX col

Indoctrination

2008-03-25T20:11:00.001+02:00

From cradle to the grave we are given a list of rules. Few question them , even fewer try to change them.

SOME HMO FAQ'S
      Q) I just joined a new HMO. How difficult will it be to choose the doctor I want?
      A) Just slightly more difficult than choosing your parents. Your insurer will provide you with a book listing all the doctors who were   participating in the plan at the time the information was gathered. These doctors basically fall into two categories--those who are no longer accepting new patients, and those who will see you but are no longer part of the plan. But don't worry--the remaining doctor who is still in the plan and accepting new patients has an office just a half a day's drive away.
      Q) What does HMO stand for?
      A) This is actually a variation of the phrase "Hey, Moe!" Its roots go back to a concept pioneered by Doctor Moe Howard, who discovered that a patient could be made to forget about the pain in his foot if he was poked hard enough in the eyes. Modern practice replaces the physical finger poke with hi-tech equivalents such as voice-mail and referral slips, but the result remains the same.
      Q) Do all diagnostic procedures require pre-certification?
      A) No. Only those you need.
      Q) What are pre-existing conditions?
      A) This is a phrase used by the grammatically challenged when they want to talk about existing conditions. Unfortunately we appear to be pre-stuck with it.
      Q) Well, can I get coverage for my pre-existing conditions?
      A) Certainly, as long as they don't require any treatment.
      Q) What happens if I want to try alternative forms of medicine?
      A) You'll need to find alternative forms of payment.
      Q) My pharmacy plan only covers generic drugs, but I need the name brand. I tried the generic medication, but it gave me a stomach ache. What should I do?
      A) Poke yourself in the eye.
Q) What accounts for the largest portion of health care costs?
      A) Doctors trying to recoup their investment losses.
      Q)Will health care be any different in the next century?
      A) No, but if you call right now, you might get an appointment by then.
Funny thing this, I plagiarised this from a medical site, written as a joke by a doctor. It isn't a joke, doc's can laugh at the truth.... But seriously we have been pushed into certain beliefs through repetition, constant denial and having the ability to think as an individual,denied from us. Just question accepted doctrine, be it religion, law, health personal finance, friendships anything ,and if you don't follow the leader "as Simon says" see what happens. Generally it is ostrasation and ridicule, anger directed, as well as insults, at you. How may question why you have these thoughts or even communicate by discourse their own thoughts in an open CONSTRUCTIVE MANNER.

There is still the quiet moment

2008-03-18T20:49:00.001+02:00

"Worse than blindness is sight without vision." —Helen Keller
We see things not only as they are, but as we are. • (Titus 1:15).
"It’s better to deserve honours and not to have them, than to have them and not deserve them." —Mark Twain

So we strive to be the best we can be. But in who's eyes? This is for my friends and others who can take something from my contemplations and better still add to them so I can learn. We all make the mistake of viewing people and events in our own skewed perspective. My thought is that although it takes away, this virus that we suffer of also has brought out just as much. We have been given a perfect excuse to lash out and also to not think before we do. I do it, you all do it. We have allowed it to become a habit.
"Wise are those who look at others with the same generosity they offer themselves, and who look at themselves with the same critical eye they have for others."
Yes, a quote, some words better said than I could. I take from them and give them to you to think on.
"Use things and love people. Don’t use people and love things."Very true isn't it.
My favourite and I'm unable to quote directly is..."even lemmings have got a leader" , "do you look and still leap or do you trust and leap anyway."
We can learn more from our critics than our admirers. • One group tells us how wonderful we are. The other tells us the truth (Proverbs 27:6; Psalm 141:5). Good words even though I am not Christian in belief.
The box of a clockwork toy made in Hong Kong:
GUARANTEED TO WORK THROUGHOUT ITS USEFUL LIFE. and I guess that is us.
Just a little humour, too wake you up.....
One day the first grade teacher was reading the story of Chicken
Little to her class. She came to the part of the story where Chicken Little tried to warn the farmer. She read, '.... and so Chicken Little went up to the farmer and said, 'The sky is falling, the sky is falling!'
The teacher paused then asked the class, 'And what do you think that farmer said?'
One little girl raised her hand and said, 'I think he said:
'Holy Sh.t! A talking chicken
If you can't laugh at life then you aren't living it. You are surviving it. Laugh my friends don't fight we are unloved enough that we don't need to build on it. CG, cee gee, repere, Colin g or just myself Colin. Thinking of you all and wishing that I could heal the world, but guess what we (alles) could together. Now I'm feeling maudlin and tearfully snotty.

A matter of Social Responsibility

2008-03-17T19:27:00.001+02:00

This is I'm afraid completely off the track . THIS IS A MUST READ BOOK. Selling Olga,authored by Louisa Waugh, published by Orion Publishing.2006. It is a deep inside look into human trafficking across Europe. Well written and probably the most up to date books on the subject. This form of slavery should be completely wiped off the face of the earth. Also the criminal people involved have no rights to being classed as human . An apt punishment would be ,subsistence hard labour, life imprisonment, with life being that , till death. The only freedom of choice is that those guilty can be given the choice of death and their organs donated for transplant. See, I am passionately against this abuse. If an adult freely chooses to be a prostitute and is not forced or coerced into the life then fair enough, register and legalise them, tax, pension and health benefits being paid in and given in return as in any other job.
Trafficking is rife in Africa as is population abuse, genocide, muti slayings, organ theft and child abuse for pornographic and sick perversions of so called humans. Thousands of children disappear yearly in Southern Africa, they are stolen from their homes, hospitals ,schools, playgrounds. Disappear entirely, no bones are found. Those that are, only then is the country all agitated. But the missing are still forgotten, remembered by their families in solitude. The majority coming from poor rural back grounds don't even have pictures, those that do usually years out of date. A world wide child register is a must, an image made at least every second year for the first 16 years taken and stored. We are morally and sociably responsible. As with Hcv it needs to be brought out and be recognised by all.
England, is an end destination for a lot of human trafficking, the government with it's laws seem to be active participants, few or little funds are made available, to end let alone prevent this sickness. The worse of it is the so called leaders and morally upright are the ones who make use and abuse in often depraved ways those who have been trafficked.
If you know or suspect human trafficking or child prostitution it is your duty to report it, by not doing so you are directly involving your self by ignorant inactivity. There are few places of refuge or help for those who have broken free of their slave masters.
Privately funded and one of the few active safe house organisations is the following. Read the book first then decide.
The Poppy Project.
Eaves Housing for Women,
1-3 Brixton Road.
London SW9 6 DE
TEL 0207 735 2062
IF YOU DON'T FEEL THEY DESERVE HELP IN SOME FORM .
then I am bitterly disappointed in you. How can you cry about having hep when this is a worth while cause. Something that you can give help too and feel good about. Colin M Goodman.

My home, Capetown,South Africa

2008-03-16T19:13:00.001+02:00

This is home, no matter where I go. It smells , tastes and feels like home. HOME!!!!!!!

Paarl vallei

2008-03-16T19:09:00.001+02:00

Short trip down the road

2008-03-13T19:28:00.003+02:00

Well I am bored, so let me think of an event. I was 3 or 4 years old ( yes I do remember) ,be surprised go back in your own memories and you will be shocked how far back you can go. We were living in Malta, my youngest brother was just a bump in the belly, so there was 4 of us , mum , dad ,Raymond and me , oh and the bump. For once we were all together, never happened much, so it was off to a swimming cliff, can't remember a beach in Malta, must be one imagine ,some where. My dad was 23 and still very young, I could swim like a fat penguin, so I was always tossed in and dad would then dive in after. Well we got to the swim spot and low and behold there was a dog tied to a rope on the bottom of the water. It was moving, my dad the hero dives in to rescue the dog,( he could be kind on occasions, not often though) grabbing the dog by the tail and hind leg he makes for the surface. Dog rescued , well parts were the tail and hind leg especially, it had been tossed in to drown days before and was animated by currents. For a youngster it was a long day, hot and fun, we did things that normal families did, my father was yet to go to Indo- china to fight and become a different person. Now the roads were few in Malta , narrow and usually up against a cliff, cars fewer still ,but my dad had been loaned one ,an ancient prewar box of a car, stiff suspension on a fixed wooden chassis, very rigid. Out of the blue, as we go around a bend ,a car wheel goes wobbling past us, dad laughs and says someone's for it they've lost a tyre, it was us. The front axle had sheared and the wheel departed on it's own independent way. We drove home on 3 wheels the car frame so stiff that it didn't loose any height but only sagged when going round bends. Good funny memory that. my folks were young and I am older now than my father ever got.

GUESS I AM THE NUT

2008-03-13T19:28:00.001+02:00

Well talking myself up didn't work.I've been decimating a whole forest by myself wiping my backside. Must be very gentle and use the softest paper ow. Yes I have the screaming trots as if I don't feel weak enough already, staying hydrated is a problem as the fluids are just rushing thru. So like many I am frazzled, so weak a geriatric could steal a sweetie from my mouth. No work for me for at least a couple of days, donations can be made to.......Just joking,I am not even on the poverty line yet, but it would be nice to earn some new money. My self esteem has taken a big knock,I am stronger than this ,well at least I think I am which is most of the battle.There are less than subtle signs of stress beginning to show in the facade that I have created around me. You get what you see with me and in the last couple of months it is me in the raw. After 20 odd years of marriage it is beginning to show little chips of wear and tear. It is purely me, I know it and no matter how I try I am showing the signs of bi -polarism. It is not controllable and it has no switch ,the mood swing is immediate and vicious. What is worse is I have the ability and the knowledge of how to be the most destructive force you can imagine, physically, emotionally and mentally, not good. Just imagine a Norseman in battle going berserk, 120 kg of unflinching un- hurtable madness, mind just a vibrating mass of anger and wanting to destroy. That's me , that's how it feels. When it passes I feel physically sick, ashamed of letting myself down. I shake all over, my mind is jumping from one thought to another. I'm so wired that I have no strength left in my muscles and they twitch in spasm from cramps. My ears feel blocked and I have that pressure between the eyes and in the nose that usually means nose bleed. I just hope that it is the sides from TX and not what is left for me. The funny thing is you can handle the feeling of illness and most of the other crap that comes with Hcv but there is always that one thing .........

In a nut shell

2008-03-12T19:47:00.001+02:00

Warning,post TX is just as bad as TX itself. Alright is is early days, but I did expect a little change in having not to take the ribavarin every day. Fat chance, same headache , same joint aches, less itching though( yippee), same trance like state to the thought process. Worse, chestiness, tiredness, loss of balance, depth perception and mood swings. went to work Monday, maybe a bit soon, lasted 7 hours not to bad, but crashed out as soon as I got home. The traffic chaos in Cape town is unbelievable, you can't enjoy driving anywhere no matter what time. Even Michael Schoonemakker said it was too dangerous to drive on the roads here. I met him a few years ago at Klapmuts where they were making a few adverts. I was surprised how approachable he was and friendly, but very tiny, most people are matched against my size. I knew I had lost weight but didn't realise how much till I put my overalls on, 2 sizes too big. I still feel fat and huge. The guys reckon I now look even more a head case, thin short hair, severe mouth and I've lost my laughter lines, (riba slip)also I have huge broad square shoulders which are now really showing. So Monday was a semi success but Tuesday was completely the reverse. Woke up drained and a bit confused, got to work and started , promptly fainted and keeled over for a few minutes. Stuck my head under a cold tap cleared the brain and resumed, 30 mins later same position and that was that, was ill all day and night. Totally confused, what was that ? It's lunch time now on Wednesday and only now can I think straight, but I have developed terrible mucous on my chest , if it gets worse then it's docs for me. Never had chest problems before! maybe with all the veldt fires lately and dust in the air I've picked up a microbe, hope it isn't Tb which is endemic in the western cape. So I SHALL FIGHT ON AND WILL WORK TOMORROW BOLLOCKS TO HCV I WILL KICK IT'S TINY ARSE........

The fear of life

2008-03-09T15:25:00.001+02:00

If you tell the truth, you don' t have to remember anything. African dawn, another day.5.30 AM my front gate.
:"War does not determine who is right, war determines who is left."Remember, you reap what you sow. What you put into the lives of others comes back into your own.
*Experience is something you don' t get until just after you need it.*
It's Sunday and as on most Sunday's it is a time that I have for my thoughts. I am extremely nervous at this moment ,after being off work quite a while I am returning tomorrow. My problem is I can't handle personal weakness and I have become weak. The physical sides of TX are apparent, but the deeper underlying problems are hidden. Perseverance thru the treatment was fine, but the fear of failure in my work isn't. Being for a life time regarded as being non able bodied I have always gone that extra mile too show that I am as good as anyone. A go for it attitude and a willingness to try anything and the acceptance that I might fail, but still putting in the effort has got me too 51. Confidence was the secret and that has ran away and is still running. What is the secret to regaining your confidence. Sickness and pain I can handle but with this I am clueless. Any suggestions? When did it happen that even though I have no fear of death I became afraid of life.....

Somewhere over the rainbow...

2008-03-07T21:11:00.001+02:00

Today, the 7th of March 2008, is the day.One that seemed so far away has finally occurred, I have crossed the finish line. Funnily it doesn't give me any satisfaction at all. There is an uncanny feeling of lack of achievement. I guess it is only right, I haven't achieved anything what I have done is endured. I can't say that my life has been improved, that my expectations are being realised. This is the limbo land time. I am living under the rainbow, the reward at the end is as far away it seems, as it always was. But of course it is just a matter of my own perspective.
How do I feel physically now at this moment.
Tired would be an understatement, as TX progressed I found that several sx became at the moment permanent features.
I have this feeling that my skin is foreign to me, that it is a bag and my real skin is underneath. The sensation of touch has altered. It has become almost a second hand sensation, it feels that there is a delay from the action of touch to the actual response of feel .My palms and soles of my feet feel extra thick, a sensation of very slight pins and needles always present.
My hearing has become more acute, but the inside of the ear has become dry and flaky, there is a sensation of something walking around in my earhole . My facial sinus seem to be going from being as wet as Noah's flood to being as dry as the Namib desert.The tongue is raw, the inside of the lips also. my gums have receded a small amount but thankfully I have good teeth. I have lost about 2/3 the thickness of my hair, but still have all my dome covered. Two big hairy caterpillars have parked them selves above my eyes and my lashes look as if I am wearing mascara. The taste of everything has changed, certain food types are now unpalatable to me leaving a rancid taste.
Arthritis has developed in my joints, not severe but sore. I notice it. I at first lost some weight, in total about 20 kg, Haven't put it back on, but I swell up like a blimp with water retention.
Bleeding episodes have increased, both in severity and time.
Brain fatigue is daily, very frustrating, I forget words or the direction of my thinking. No appetite ,no drive, no energy. Do not ask me today if I am any better after TX. Ask in 3 months.

BUT IT IS DONE AND DUSTED SO FAR. IT HASN'T BEEN FUN!!!!!!

Some of the greatest disappointments

2008-03-05T10:00:00.001+02:00

Namib desert Southern Africa.
I have harped on this before,one of the greatest disappointments to me is the continual in fighting that goes on between people that I have met on forums. Not just those Hcv related, but others as well. You would think that there would be common ground, a neutrality in personal conflicts in these places. Forums are not blogs, they are supposed to be communities of like minded people who meet to discuss and think about certain things relevant to that forum . I have over these last few months made contact with a lot of people, most are unaware that I discourse with others that are so called the foe. Why I ask my self is there so much animosity, aren't we all in the same boat, there seems to be a competition going on between individuals ,that they are the best or most knowledgeable or that they hold a more significant social position in the pecking order. Does it matter, I hope that there will always be some one better than me at everything, with out them I can't learn and grow as a person. My significance in life is unimportant, for like all I will die and all that is left is dust.
What is important is to be the best you that is achievable, not what you have as possessions or social skill or wealth. Happiness is being satisfied with what life deals you, making the best of it and when you go on be remembered as being an individual.
It is sad that you will always have the hurt individuals who cannot accept things, they have anger and pain inside and need to feel that they can lash out and make others hurt as well.

I don't want to pity you, but I would like to understand where you are coming from and why you have this need. I am a mean viscous bastard in the flesh and have been described as being without compassion for others, ruthless to the extreme. Maybe I was and maybe I still am, it is up to life what I have gained or lost from this experience with Hcv, Friday is the end of this chapter , I finish TX, I now can detoxify. When it comes to forums I shall continue to be a member as long as there is some benefit I can be of to those who need support. There seems to be a lot more information out on the web these days, different than 38 months ago when I started on this path of TX's. But the questions and worries remain the same for those who need or are in treatment. If friendship is all I have of value to offer then I will gladly give it
It was given to me and at the time in life when I needed it the most. To my friends I thank you, to my enemies I also thank you. Enemies I have always had , so I am used to you, friends are what I have gained, which is strange and new to me. I much prefer friends

When does your left hand know what the right is doing?

2008-02-27T19:28:00.001+02:00

The changes in personality, the switch that throws the change is hard to figure. Maybe in my case I have had always this borderline psychotic temperament. The Jeckel and Hyde syndrome. I know I have that fault in my personality, the streak of innate ruthlessness, cruelty and all consuming viciousness. Off treatment, it was directed and controllable, a learned mechanism which protected me from being affected by anyone or anything. On treatment I am dangerous to be around, I will kill when one of the rage's attack,I have kept myself away from people because of this. What throws my switch seems to have no pattern. I've tried anti this and that, doesn't work, anti-d's just make you slower to react, they don't relieve they just muffle what is going on. Self introspection has no value either, it's as if TX allows a lowering of your psychic walls and for a short period you suffer from daemonic possession. If you have a belief structure that revolves around a supreme being and acts of good spirits why is it scoffed at that psychosis may be a form of possession. It figures that good and evil must be self perpetuating neither being able to be viable without the other. I can't think of anything that hasn't got a direct opposite.
I am coming to the end of this present protocol, und. at the moment, maybe in 5 years I will feel I've achieved Svr.
Why wait so long? I have experienced relapse myself, know of relapses personally after a year, 2-4 years of Svr. In 5 years if I relapse it will not matter to me. I have already exceeded my expected life time and I am still written in the book of life.
If it looks like the entry is going to be erased then I shall enjoy what is left and then when it becomes a burden will end it. This is not a form of depression, it is something that I have always been prepared to do, death is not a mystery for me.. It is just a readjustment by nature and a chance to recycle the investment in energy that nature has made in me.

If someone with multiple personalities threatens to kill himself, is it considered a hostage situation?

Quote by Robin Williams
"God gave us a penis and a brain, but not enough blood to use both at the same time

Crystal Forest Prayer In Times of Stress and confusion

Author Unknown

O Goddess, Mother of the green earth, blue waters, and silver moon; be with me
now in my time of need.
Stress and confusion have taken over my life.
I feel the weight of life's burdens pulling me down.
I am afraid
But, I know you hear me now.
Your loving kindness is making the weight easier to bear.

My God, Father of the dark forests, and shimmering mountains,
Impart to me some of your spiritual strength
So I may get through this time of crisis,
And get back to my normal life once more.
Blessed Be.

Back wards thru a looking glass darkly.

2008-02-27T19:27:00.003+02:00

Some will know from where the above was taken. But it suits my present mood,if not in sense of the original it describes my present feelings.Those pwh sufferers will have an understanding of how things go. Often the major bleeding episodes are the easiest to recover from. The small niggly, messy one which lingers are all the more draining. I have had a life time of kidney bleeds, occasional stomach bleeds and continuous oral and throat bleeds. These are to the most part only a nuisance, smelly if in the throat, not a question of oral hygiene just a fact of blood being continuously present. My hg is low and it is not really doing anything towards improving, but in 3 weeks my treatment is over. Recently I received a piece of news which I don't want to share just yet, it may eventually have it's airing but there is no point in doing so now. Earlier on today I posted I will not recant as it is how I felt and still do to an extent just to tired of life at the present to battle. Even I can feel shat on and tired of battling, I'm tired that the years are passing, I haven't achieved or done anything but tread water and survive. A year has almost passed since my mother died and I've done nothing since then to make it any less the main point of this year. I can only reflect back past these latest years, it feels that I've been swimming in quick sand. Slowly and imperceptibly I am sinking deeper. Smile the cosmic joker is pulling the strings.

2008-02-27T19:27:00.001+02:00

STARE INTO THE CAT'S EYES FOR 10 SECONDS .
Then Scroll Down

NOW STARE IN THE PUPPY'S EYES FOR 10 SECONDS ...

Scroll Down

Your CAT SCAN
and LAB TESTS
are now complete

Why me?

2008-02-21T11:06:00.001+02:00

The face that people see,is one of a person who copes with all the bitter things that life throws at him.I wish it was so, but there are times when I tire. No secret I'm on Hcv treatment, but it isn't that,I am weaning off anti-depressants, it isn't that.What it is ,partially, it is like a long distance marathon runner, you start your race, you suffer during the race, shear will power to finish drives you on ,past your normal endurance and then the worst part of such a race approaches. You catch sight of the finishing line. There it is, reachable and directly in front of you. It doesn't spur you on though, it does the opposite, everything that has occurred during the race, the stress , the pain the exhaustion all come crashing in. All that is left is will power and that is fading fast. This is the time when the supporters bare you thru, they lift you up emotionally and drag you by shear force of spirit over the line. Today I feel alone, for a while I have been able to get thru things by supporting others, it gave things a purpose. Today I need support, but it isn't in my nature to ask for it. There has always been a hope that people would get to know me, like me for who I am and see when there is something wrong. I have been I suppose, mistaken and I am still the closed and difficult individual I was. Maybe that is how I need to be in this life, it got me so far on with living, private and closed I can cope.
I think that by blogging and keeping some sort of journal I can satisfy that need in me , to release a bit and not have any responsibility towards those who read, it is after all a monologue no inter action of dialogue.
I have decided lately to gradually move away from the forums, I have become a little too involved. I don't really fit in as I am always under the impression that I just make up the numbers, I am too far away and to different in my thoughts to make people feel comfortable with me. I went on to face book and that isn't the great social engine it is supposed to be. It is a place of gimmicks and often childish and inane little packages. This stops actual thought and realistic contact. It should be a place of meeting, with facility to make new and to reestablish old acquaintances. all the add on's take that away. It is if anything a meeting place for the bored. I surf to much on the web, the amount of information is unbelievable and the way of tracing things and people fascinating.

Love and freedom.

2008-02-15T14:02:00.001+02:00

I was fortunate in a sense to have been born and live during the most formative decades of the twentieth century. A century of massive wars, destruction, countless deaths. A century of displacement of races,values and traditions. The ending of rule by the entitled to rule by the masses. Or so we are led to believe.
After the oppressive starting decades of the century, a migration from the country to the cities took full pace. Due to the wars the thoughts an expectations of the populations had changed. The desire for made goods was ignited, also the types of skills in these years altered ,reading and writing became all important, being able to read allows education to develop and the realisation that there was a lot more to life than what was on your door step. The years of the depression caused by draught driven famines, the drop in rural manpower due to the exodus to the cities ,lack of trade and financial confidence ,were dragged aside by the resurgence of war. The second world war brought a focus on education, skill development and of course methods of production. Investment in skills training and a shortage of man power allowed the first true emancipation of women, they were for the first time allowed to do equal jobs as men,although not regarded as of equal value and standing and more often than not being paid less than their male counterparts.
This would lead eventually to the sexual revolution of the 50's and 60's, women had there own wants and desires and were far more ready to demand it. Enough history on to my story.
Born in 1956 smack in the centre of the cultural revolution, people were richer, economies were growing and that boon to the working man, a shorter working week. More free time with more spare money allowed people to try out new thoughts and ideas. TV and radio opened up whole new markets fashions and ideas jumping across continents as quick as a signal could take them.

Love

2008-02-15T14:00:00.001+02:00

Music and freedoms of expression exploded in the 60's and 70's.
With the freedom of leisure and an improved education system, not necessarily a better one, the young started to rebel against the staid and stuffy upbringing of their parents. This was a time of experimentation. Drugs, fashions, sex, life styles nothing was taboo, everything was open. These were the years of sharing, most everything, of communing with the spirits, nature ,the inner you what ever you desired. Drugs were regarded not so much as an escape from yourself but a way of lowering the barriers and opening the doors to the inner you. It was a done thing and not looked down on to the extent it had been and will be in the future. Sex was a big experiment, the g spot and the transcendental orgasm a thing to be searched for. STD'S were simple on the most part to be cured and were not worried over, after all it was only a jab in the arse, no one mentioned the painful umbrella treatment or the wet rot of genital herpes. I can't recall how many times I was involved in group sex or what we called line ups at parties, how many passed the bong or made a skuif, the quick sweaty grunt and fumble in the rear of a disco, only to quickly return to look for the next partner. It was fun, the penalties seemed low and of course you got bragging rights and were one of the lads.

We were many things in those days, innocent always, naive of course, we made the generation what it is today. The thoughtless, greedy, self satisfying uneducated youth of today. They are the product of our indulgences and we have reaped what we had sown. Aids, Hcv and all the other nasties, we put it out there and it has come back and bit us. Whether directly or indirectly we haven't got the right to complain about our lot, dislike it yes, treat it of course. But to complain, I'm sorry we don't deserve that.
Hepatitis is not nice, it is not fair and it is a shock to be told you have it. It wasn't a choice to catch it but those of my age group didn't hold back, worry about disease and death or of transmitting disease. Condoms were for fairies and skin to skin was natures way. Yep so is transmission of illness skin to skin , natures way.

Ability

2008-02-14T19:43:00.001+02:00

I had an interesting discussion last night, it was about functionality. A couple of my friends made an unexpected appearance. They had migrated about 4 years ago to NewZealand. They are a gay couple with a 7 year old adopted son of a different race, we got talking about prejudice,(mainly because of the reason they relocated in the first place) eventually we got on to the subject of disabilities. So the thought has stuck with me and I would like to share it.

Personally the word used in the context of human abilities appals me. I prefer, if it is going to be a classification, as being regarded as differently able. No one born or dead has been truly able bodied. We are all born imperfect, we are all different and it is that straying from perfection in body and form that makes us individuals. If you live you are able, maybe not to a degree of function which may be sufficient ,but you will have at least an ability. The descriptive disabled is limiting and if applied to one's self sets borders of being not able. It is self restricting and allows the excuse of the inability to do certain functions, to not to try to do them differently.Disabled is the perfect crutch and is easily used to give a place to hide from life and make no attempt to actually live to your ability. It is used as an excuse for all sorts of illnesses and vices. To rise to your abilities, to go beyond your expectations of failure, to try, be defeated but not give up makes us all able bodied. To do the most and the best you can with the tools you have got in life makes you a success, each small achievement is actually a giant stride and should not be measured up against the values of others, but it should bring satisfaction and a sense of gain to yourself. Any move forward ,is a step further than what you had walked before.
My friends due to their gender preference, family and public prejudice, personal and public expectations of life styles had made themselves disabled, unable to live the life they could and should be living amongst their friends. By setting personal boundaries they to showed active prejudice, they presupposed many things and made themselves dis -enabled. Being different is human and not disabled. You should live your life as being differently able.

The end of the road is in sight

2008-02-11T21:12:00.001+02:00

This trip with Hep.C. or rather this regimen of treatment is almost over. Four more weeks of treatment, although another 24 has been discussed, then it's over for me. I haven't got the physical stamina left to carry on any longer. Three years and three tries is enough for now. If svr is not obtainable for me then it is already written in my book and I have done what I can to beat it. Having caught and beaten Hep B. (missed diagnosed at the time) two major operations on my legs and pelvis and the TX's I've endured has left not a lot left in my batteries. Tired in body, mind and spirit I need to spend some recovery time without drugs in my body. I recently had a small tweak of the gonads with some not so good news but have come to terms with it and will have to be more reactive than proactive with my liver. Tough but so the wheel turns and life such as it is goes on.Not the easiest of people to get along with on the best of days my family are still together, it hasn't been easy for them either. My expectations of myself are sometimes reflected on my expectations of them, not good , as, if I don't measure up how can I be judgemental on them. I found that recently, or rather on this present treatment ,there have been great changes in my views of others. Having to manage and get through life with all the conflicts that have occurred I have finally learned , patience, tolerance and compassion. Things that were not high in my way of living. Once there was no middle road, there was my way or your way, I tended to walk with a very big limp, favouring the my way side a bit to much. Funny thing is I can walk farther and quicker by stepping on both sides and using the middle, much easier. Well I can see my finish line and if I get a medal for crossing then time will tell.

A thought out of line.

2008-02-04T20:56:00.001+02:00

I have found lately that I am in need of communication with others. Like my body my brain needs stimulation, I spend too much time in one way communication on the Internet, For a short while I amused myself with sorting out my web browser problems, that is in the past now. Too snap out of my lethargy, whether tired or feeling ill ,I walk at least 7 km, out of bed by 5 .30 , washed , dressed etc by 6 .15. The rhythm of what used to be my natural day coming back in sinc. With no schedule you tend to slide into lax and lazy routines which are no encouragement to advancing with getting back to normal. Still not well enough to work I think some of it is fear of not being able to cope. It is safer to hide and withdraw from society, yes I have trouble with coherent and sustainable thoughts, a constant numb headache and those sudden losses of energy. But I can't hide for ever. If tx fails again that's it for me, not for the sake of trying. Emotionally , physically and financially I can't maintain any more of it. It has been 3 years of nearly constant tx, with gaps of course in between, my support base has eroded as they also can only take so much of the illness. At this moment in time it doesn't look like I have been able to stop more damage to my liver. With 8 more weeks of treatment I will fight thru till the end. The results of my recent liver biopsy immaterial as I do not fall within the qualifying stats for transplant and know of no fellow bleeders who have had successful transplants. At least not here in Sa, I simply don't qualify and that's that, end of story.If eventually I succumb to the cirrhosis I have a few things I haven't done that I want to do before I die. Things that I have never been deemed fit enough to do but if it kills me what do I lose, a little time. I don't think that I am one of those who will fight till the bitter end ,but I will go out on my terms and refuse to be dictated to by a bug I haven't even seen. Realistically my affairs are in order, accounts paid , no debts my youngest almost an adult and my wife with her own life ,having no financial burdens and more than capable of carrying on with her life without me. For that I have a satisfaction of achieving with all the distractions of health just as well as those supposedly able bodied. Also in small ways I have left my mark on history, effected a few lives and lived.

If it is convenient

2008-02-03T11:05:00.001+02:00

You can read all the textbooks there are on Hcv and apart from the clinical,facts and effects of the illness, there is a big lack of treatment for the main reason of doing it. You treat, not to beat the illness, not to extend your life but to improve life's quality . The whole effort is placed on the body and it's functioning, what does it leave behind after TX?
The vehicle that contains you is treated. That package of organs and separate but interdependent life forms that comprises the self -contained universe of your living body. But what of the spirit that is the sentinant part, the awareness of being alive and individual. That is not taken and treated along with all the other nastiness that is called Hcv. Treatment ,if any, is remedial. The mental and psychological effects only observed in the context of doing the treatment to it's conclusion. Most if not all of us go in to tx with a survival plan, but not with one that is built around maintaining who we were. We change few come out the other side of treatment whole in mind and spirit. We lose something along the way, it can only be treatment related because that is all that has changed in our lives during that time. It is not that there is an unawareness of that sx, it is that there is no profit in it's treatment, it is ignored by the governmental health bodies and no financial or support is given. You go in and do your thing and how you manage to support yourself and your family, well that is your problem. Part of treatment should be, morally, support in whatever form that is needed to get through this time. Forget about the cost of treatment itself, we the population have forgotten that governments are servants of the people and we have allowed ourselves to be convinced that we are servants of government.Held in our place by fear of retribution, by the very people who are where they are because we put them there. Our silence is deafening , before money is wasted on the fripperies of public office,parties , trips overseas, lavish banquets, security, extravagant transportation and of course the expensive furniture and art work that are the signs of a powerful government worker. Thought MUST be put to the people who are the body of government. It is a sad fact in life that more money is spent in the act of killing than that which is spent in the support of daily living. We are fools, we put these self serving people in the position of power, we keep them there not because of the service they do but because we side with one gang or another we are pack led!!!!!!!

Forums and the question of freedoms.

2008-01-28T21:50:00.001+02:00

Lately in several forums a question of freedoms of interaction amongst individuals have been drawn. It is a reoccurring theme and pops up it's little head every couple of months. Freedom of speech also means the freedom to reply, on forum. If the contact is made off forum then the basic principal of a private conversation should then be applied. The forum administers and adjudicators have the moral responsibility to prevent it becoming part of the public domain. But unfortunately this can only be done by a totally unbiased individual and on a completely unbending basis ,according to the rules of the said forum. The rules are usually part of the stipulations made on joining a forum and agreed to by the member to be. A blog is a separate entity, it is either an open page or restricted, it can be responsive or just a closed statement and the right of an individual covered by common laws, slander copyright etc. If you enter a blog and don't like what goes on in it don't return, other wise it is like complaining about pornography after you have checked it all out. You had the choice of reading or not, no excuse. Another complaint is often the swapping of memberships from one forum too and fro. There is absolutely no problem as far as I can see, it is after all a forum, it is not a possession and is made up of it's members ,a forum of one is called a blog. It is just a question of jealousies and personal possessions, we all tend to form bonds with certain things and people if it looks like that bond is endangered we tend to react, not always in a good way.

A reflection

2008-01-24T19:54:00.001+02:00

Well , thinking on about Hcv,I have these thoughts.
The biggest problem I think with carrying this virus is it's delay time ,from when we contacted it ,till the time we are showing active viral affects on our bodies. For the most of us it is a slow process. There is the rub. Without realising it we have been making continuous compensations to the damage being caused. We don't suddenly become over taken by the symptoms, often slight at first we ignore them until they cannot be ignored. By the nature of viral transference , more than a few have contacted it through having operations or repairs after accidents. That in itself is taken to be the cause of any niggling complaints we might be feeling afterwards and we put it down to that.From personal experience away from Hep the continual feeling of illness or pain drains you. Depression in some form or the other is the result. To a certain extent you can handle it, but because it is dragged out it often needs assistance in some type of treatment. Often shame in the fact that you feel that you are showing a weakness stops many from seeking aid. Depression is not without symptoms ,it too causes a few of the sides we put down as being due to the virus. Also it is not unusual to have a combative personality, you become, over time, more aggressive in your responses to what is perceived as a personal attack on your sensitivities. Often not meant as such, it is usually over reacted to and becomes a full blown disagreement. Often it is only due to the fact that for the majority the communicative skills are not good and our personal knowledge of another is only slight and mistakes are made. Face to face many have trouble getting a message or, even harder, a feeling across. Health forums are a difficult environment to make contact and maintain a pleasantness of associations, sick people dealing with issues with other sick people are very explosive. Questions on how much you can ask or say are raised. Life is never easy when dealing with others, travelling around on the web I have noticed that most of the people using these forums are like me, not unfriendly but also used to being very private in their personal lives, have few friends but a lot of acquaintances. The forum is a place for us searching for contact over and on top of assistance or advice on Hcv.

A style of their own.

2008-01-17T20:04:00.003+02:00

People were on the move every where, not the sophistication of today's transport. The push, pull style if you could get on or in a vehicle ,you pushed a place for yourself and hung on for dear life. The whole lively hood or packages or farm got on with you with who ever got on next in line. So the inside of the vehicle would be heads and arms and crushed bodies , the outside would be anything from tin pots and pans to bamboo poles filled with trussed up chickens for market , or a pig in a wicker basket, who would calmly nibble on whatever was adjacent to it in he pile. Not an unusual sight would be a farmer with his produce all balanced carefully on a push bike, a little mountain with two little brown skinny legs and flip flops wobbling along. In town , the most usual means of goods transport would be a hand cart, fashioned out of an old lorry axle and wood, some times just a plank over the axle. Fantastic loads would then be put on this and dragged, pushed and managed at an unbelievable pace by two guys who look close to death,(wiry little buggers). The more affluent would have an old scooter or moped with which they would pull a little cart behind. But I am forgetting the most famous form of transport , the yoke. To see these tiny little people carry these around loaded with you name it is a sight never to believe. Finally there comes the head, bananas in a full blown bunch are heavy, to see some one who walks miles with 4 or so bunches tied with string to market on there head would blow a European. One memory that will never leave me is this. Dawn comes more or less at 6 every day, the start of the day would be the shop keeper would roll up his shutters. Those who are fortunate to own a bed and slept under the eves would pickup their wooden beds, no mattress and take them back to who they hired them from or to there storage nook. Using oil lamps the keeper or a worker would scatter drops of water on the pavement out side the shop and the dust would be brushed. The tables put out and the goods displayed. Then out would come the little charcoal stove and a tower of steam pots would be filled and breakfast cooked. This would depend on if the keeper was a Muslim or not other wise it is washing of the hands and feet the prayer mat out and prayers for the day said. Within minutes it would turn from relative quiet to utter rowdy chaos and another day would start. Well I can't write about it all at once so I will return and speak more another time.

Hot, sweaty but fun

2008-01-17T20:04:00.001+02:00

Used to heat ,it was still a shock stepping off the plane at Singapore airport and walking the 10 min's to the terminal buildings. The humidity was so high you literally ran with water in that short time, it was also early morning. (I am not sure of the spelling, 40 odd years have passed) Pyah leba, air port has gone today and most, if not all of the places ,I knew then have disappeared several times as Singapore has grown. Nothing from my child hood memories remained on my last trip over, although the names quite often haven't changed. W e moved into a small bungalow in Jahore Bahru, for a short time until my fathers orders were confirmed and we knew from what base he would be operating from and for how long. Jahore, the tip of the Malayan peninsula,scarcely 1km from Singapore, just a narrow shark infested straight separating them. It was a lively smelly, dirty ,bustling city. The Sultans palace a place of beauty on the shore front. (We were to be held in the hotel several years later there, when my South African passport and visa expired . I wouldn't mind being kept in detention again if it is still as it was.Probably well out of my price range today.) Down the centre of Jahore ran a canal, laughingly called the sweet water canal, anything but. It was an open sewer the toilet pits, sewerage and industrial and commercial waste slopped about emptying to the whims of the tides. These huge open ditches were necessary, most of the shore line is barely above high tide and is true of Singapore, the majority of which is man made land. These drainage canals are necessary to carry monsoon rain run off. Monsoon rain is like taking a full bath standing up, it is so wet that you feel like you could drown just standing there.
The people are a hodgepodge of nations, Indian , Malay, Chinese, Thai, Indonesian making up the majority. With a smattering of Eurasians and other races thrown into the mix. At the time the principal industries was, rubber, palm oil, copra and coconut products, rattan furniture. Fruit and fruit products and of course commercial trade, the centre of Asian commerce and shipping. So Jahore was one big open market.

A change in topic

2008-01-17T20:02:00.001+02:00

Well today I feel like a change and I would like to record my view of a life time that has gone and past. Malay and Singapore after the second war, were still part of the then British Empire, as with all empires it was fading into a slow fragmented death. England bankrupted with the cost of two world wars, (monies that have only just recently been repaid to the USA and creditor banks.)were stripping resources as fast as they could from the British common wealth nations to rebuild the economy and bring the country out of a recession that was only interrupted by the war. India became a self ruling country once again and nationalism was spreading through out the east. The Japanese were allowed to make little ,or even today no reparations ,on the theft of assets, destruction of populations and the rape of infrastructure of the countries it had occupied. This suited the financial institutions of the west as they still had assets held in Japan and needed Japan as a strong trading market. Thinking quite wrongly that by seizing the assets and machinery of the weapons and engineering companies the Japanese would be forced west for goods. Canny businessmen, the Japanese buried and hid the machinery that was of any use, allowing the rubbish to be taken and sold, then applying for loans to the world bank to replace the lost machinery, at low long term interest rates. Japan Barely shuddered and were up and producing in no time cheap and second rate goods for a rebuilding European market. Using the old plant to produce while they built up the new plants using the loan monies. It was into this Asia I entered as a young child, the early and most of the 1960's.
Apart from a 2 month stay in the UK we travelled almost directly from Malta to Singapore. We flew in an old Viscount, (new then ). The trip done in stages taking the best part of 3 days, a noisy aircraft, prone to being tossed around. The plus was that you didn't travel so high in those days and you could actually see features on the ground. Desert dunes looking like ripples in the sand ,rivers were muddy shimmering lines, coast lines distinct and the vegetation bright against the blue of the seas. Air conditioning was none existent what air there was was supplied by fans , which if you were lucky to sit near a nozzle ,you could direct on yourself. There was a pervasive smell of wild electricity, plastic, vomit, young babies and unwashed sweating bodies. All chased of with the horrible smell of British airways food. Cooked god knows when, in what country, but always wrapped in mummified form in layers and layers of cellophane. Everything was luke warm, even the slice of bread and the pat of marge and jelly like jam. Entertainment consisted of stale news papers, books , magazines and cards. Lovely days , nothing like being trapped in a tube, thousands of feet in the air with a group of board cramped people for days. Children, as it was then ,had to sit and be quiet, no getting up and playing with other children and disturbing the adults. In those days you did what you were told , you sat got board, fidgeted and then got a whack for your efforts. An hour is a long time for a child , let alone days.

WHO BOTHERS TO COOK

2008-01-14T19:27:00.001+02:00

Ingredients

Quick Recipes Mushroom and eggs supper

Heat the oil in a frying pan, cook onions till they soften
Add tomatoes and cook for 2-3 min's Put onion and tomatoes into the base of a heatproof dish. Arrange the slices of hard-boiled egg on top. Heat the soup with the milk in a pot, add 50g of cheese and stir till cheese melts. Don’t allow the soup to boil, season to taste. Pour mixture over the egg and sprinkle on the remaining cheese. Place under hot grill until bubbling and golden. Served garnished with chopped parsley.
.

Mushroom and eggs supper.
1-tlb spoon oil,
1 onion, chopped.
4 tomatoes skinned and sliced.
4 hard-boiled eggs sliced.
1x 300g can of condensed mushroom soup.
2-tlb spoons milk.
75g grated cheese
Chopped parsley for garnish

Serves 2, prep time 10 min's, cooking time 5 min's

Quick Pilchard Special.

1x 300g of pilchards in tomatoes sauce.
2/3 of a cup of tomato Ketchup.
3-4 drops of Worcester sauce.
2 tlb spoonfuls of top-of –the- milk.
1/2 level teaspoon of sugar.
4 tablespoons of mayonnaise.
Salt and pepper.
1 tomato sliced
50g grated cheese
Serves 2 as main dish or 4 as light snack. Prep time 10 min's, cooking time about 5 min's.

Divide the can of pilchard into 2 heatproof dishes. Add the Worcester sauce, to the mayonnaise and tomato ketchup, milk, sugar, salt and pepper. (To taste). Combine thoroughly. Add the mix to the 2 dishes of pilchards. Place slices of tomato to cover dish and sprinkle over the cheese. Pop under a hot grill and brown until pilchard mix is heated through.
These are 2 light and easy suppers. Ideal for the single dinner who doesn’t feel like cooking. Easy to digest and good for those who are on TX or with sx. Cee Gee

Life as it is

2008-01-14T19:26:00.001+02:00

In my own personal view the worse aspect of Hcv treatment isn't the general side affects, it is the depression it brings. By nature I am a pessimist, expecting and planning for the worse case scenario. Not trustful of others I lay no reliance on them. Pain and general malaise I can handle, never known anything else, but the depression........
With me it started with a general feeling of panic, not something you could actually point too and say that is the cause. Always an insomniac the progressive deterioration of of my ragged sleep pattern went un-noticed. Exhaustion set in, this was over and above the affects of Hcv and treatment. Being self reliant I started questioning everything I did, feeling that I should make more of an effort in everything. My concentration went out the door, this constant indecision interfering constantly in my day. I started to have blank episodes, when I started to feel faint all the time it was enough, I wasn't safe to work. My driving suffered,indecision and judgement made that dangerous. So on top of everything I had the worry of loosing my job, no income, progressive cirrhosis, stress induced bleeds. The death of my mother and a massive bleed knocked the rug out from under me. I had a general breakdown, am I recovered? It depends on what you called recovered? I exist today, I get by. How do I do it, I haven't the foggiest idea. I just get up and push on through until I sleep. Tomorrow will be much of the same. I have lost who I was and don't know who I am or who I will be tomorrow.

Living with Hcv

2008-01-10T19:36:00.001+02:00

Having Hcv is feeling that you are living a half life. You feel ill but not, you have the will but not the strength. You start to wish that you could look like death warmed up to prevent the ever available "My your looking well". I don't feel well, I look like I could go 12 rounds with anyone. Most days I feel like crying, I wake up that way ,I'm on anti D's ,fat lot of good. I'm hungry but as soon as I taste something I want to vomit. I have a constant dry mouth, dry eyes and a strong metallic taste in my mouth. My legs are swollen, my joints ache, my urine is dark and stinks. I have a slight headache 24-7, my eyesight is deteriorating and my skin itches. I have no control of my body heat. I can feel hot and freezing within seconds of each other. I have constant cramps in my legs and arms. The insides of my ears are constantly itching. My bowels are loose and the soles of my feet hurt. I do all the right things to keep my body well, eat drink and exercise correctly. Welcome to my life on TX. Yes I look well, I smile a lot I am after all on holiday, or so I'm told. Aren't you lucky that they keep your job open, well it costs my boss nothing as I don't get paid. Am I bitter? No ,should I be? I am on treatment to save my life , without it I would not live for long with the damage I have incurred to my liver thru the Hcv virus. Would I do TX again if I needed too? Yes , I've already done it twice before and still have 15 weeks out of 52 to do, which maybe stretched to 72 weeks if I can.
This is something you could do on your own but why when you can make and form friendships with fellow heppers on forums. I have and I am not the easiest of people to get on with, being self opinionated and controlling that I am.

Living with haemophilia

2008-01-09T19:57:00.001+02:00

As with the majority of PWH (person with haemophilia). I was born with the genetic mutation which prevents my body on occasions from processing and manufacturing vitamin K (in my case and it will vary according to haemophilia type). This is called a blood factor and is measurable, I'm a factor IX bleeder, with a base level of <4%. This makes me classified as a moderate to severe bleeder. Also I don't have a typical bleeding profile which makes controlling some bleeds problematical. Over the years I have developed methods of my own which work for me to control bleeds. If I have a wet bleed I will remove the clot myself, scrape the wound clean, flush it and seal depending on the type of wound. I will periodically remove the wet clot and dry the tissue until granulation and clotting occurs and the wound stops bleeding. I home treat so have plenty of factor available so I try to maintain a level of about 40% for at least 2 days reducing to a maintenance dose for 2 days after I have controlled the bleed. This is not a recommended procedure and would be frowned upon by all haemo clinics, it works for me and keeps me away from being messed with by educated ignoramus that is doing haematology as a sub specialisation and hasn't a real clue. If you get a good haematologist grab hold and don't let him or her out of your reach they are as rare as hens teeth. Joint damage comes with the territory and over the years I have suffered many prophylactic practices which were or are the in vogue treatment of the day. Most of them don't work, take time and cost money ,but sound good to physiotherapists. I have the utmost respect for a therapist who is suffering and living with the illness to instruct me and is willing to go thru the training or exercises with me. The best advice I have had is eat properly, keep your weight down and do all exercises in moderation ,rather slowly over a period than flat out and strain something. Well ,I do 2 out of 3 , I am an unfortunate that can gain weight without eating, there is a medical explanation and it is all tied up with my liver, pancreas and hyper adrenaline levels. All thanks to my little companion Hcv.

The wheel turns slower

2008-01-07T20:18:00.001+02:00

I was scarcely prepared for the procedure to fix my legs. The company I had been working for as a production manager decided that as I couldn't give them a firm commitment about being able to work, fired me as being unfit for my duties. There was and still is no firm assurance of unemployment payment for those who are involved in a trade and anyhow it is a prolong and frustrating system to work through and at the end you may only get a few hundred rand's after months of toing and froing from one dept, to another. It took me 14 months to obtain R400 tax rebate that period I was not working. I paid out of my own pocket R14000 for the op,and follow ups. I was unable to work for 2 years full time. The reason 3 days after the op, due to poor hygiene procedures in the hospital I caught septicaemia. Hydroencephalitist resulted and I was in septic shock. I wasn't suppose to pull through, my blood levels dropped and I was also bleeding all over. I ended up in high care for 5 weeks and in hospital for 4 months. I refused to cover the bill for this and was prepared to go to court but the bill was squashed. So eventually I was released, unemployed, unwell and with only my savings to live on. So I decided to do what I liked and just lived it up. I had a 2 year old Audi 200sl and just decided to give up my flat ,sell what I could and drive. That was what I did for the next 2 years, living in my car, working occasionally and going from one beach to another, one dorp or the next as it took me. But eventually life catches up and I decided to get back to Cape town and restart anew. My weight had dropped to 78 kg, I had a scruffy beard and long ,long hair. I was black from the sun and apart from fruit and sea food hadn't eaten home cooked meals for years. I was clean but unrecognisable to my family. I had got so use to living outside that I couldn't adjust to living indoors for months. Capetown meant that I had to get a job, I didn't want to go into engineering. During the proceeding years my father's health had failed so for a few months I got his businesses sorted out and took over a garden / building business for him while he arranged to sell it. That is how I met my wife Tracy. I was her garden boy, I had scarcely noticed her, she was 16 and I was 29, she was just a kid. I only found out 2 years later that she had a crush on me, when I had moved into my parents home to help with my dad who would die 3 months later. I never asked to marry her, there was no proposal we just got married. It felt right, we had no money, no place to stay and nothing in the way of goods. We never even dated, don't ask me how it came about but we have been happily married for 20 odd years. The week after we married I bought the house we now own, at 2/3 the market value. I had nothing in the bank , no full time job and no savings. To do it I lied, also there was so much under the counter dealings going on that I never even paid transfer or registration costs. I had to get a full time job and applied at a new company which I had dealt with when temping. I fitted in and never have regretted staying with them through the years. So we have reached today. There is more but the fillings will come in time.

The Final Decision

2008-01-03T20:00:00.001+02:00

Shaken, bruised and very stiff I was kept in hospital for a week, mainly blood factor maintenance and observation. Being asleep in the back and laying on each other had saved our lives. But we had been crushed into odd positions, due to his circulation being cut for some time in his foot one friend would eventually get infected and loose a portion of that foot. The other would end up with a permanent dead spot on his face due to facial nerve damage. Myself, already having a damaged pelvis and a non existent ball to my right hip, had come to the end of my choices in life. Unable to walk and work , it was no option but a full prosthetic hip.I had already been refused one in England, due to haemophilia and the risk to me, more likely it was something that a surgeon didn't want to risk his reputation on. I was fortunate, having been a guinea pig all my life, a new, for South Africa, procedure was going to be demonstrated and the surgeon from Austria who developed it was going to use me to demonstrate. I was happy to take the risk and signed wavers of liability explaining that I understood the risks involved. A date was arranged. My mind was made up, if my wife (ex) didn't come over then I would be unable to return in the near future. What monies I had was for my op and support until I could work again. I asked her to come over, she refused, so I went for a divorce. She refused but was still not coming over so the first papers were served. That day she phoned and told me to stop the divorce, she was coming, a couple of weeks went by, not a sign of her coming over, so I continued the divorce. She then contested it, but I had supporting documents, receipts and letters for my case and it was granted. My ties to England were cut and my place of birth was now home permanently. This is boring but it will explain a few things later.

A Different Start

2008-01-03T19:58:00.001+02:00

Well it would be lying if my return to South Africa was actually a move to the unknown. My family was over there, my mothers surviving 18 brothers and sisters and 7 of my fathers family, not counting countless other cousins and close relatives. The original plan was that my ex-wife and I would come over but not plan to settle . We would travel and get a feel for the country and maybe settle later. I wasn't keen to sell my UK house , give up my job and take the risk of not finding my feet again. Whether it was planned or just how the wheel turns it never quite went as I planned . I ended coming over, I was to find a place and my wife was to follow. Never happened, 2 months after my arrival she told me she wasn't coming, I was to spend a month or so seeing my family and return. Not so easy in 1983, she forgot I was a South African and had to obtain re-entry visas to get into England otherwise it was on a tourist short term visa. Applying for a British passport I found that I was never registered ,as my brothers were ,at the British consul and had to make a full request for a passport, apartheid years made it very slow and convoluted process. My parents were not keen on my having a copy of their marriage certificate and in South Africa you never got a full Birth Certificate just a copy from the register of births. It took A year and a half to sort out and the delay was blamed on me by my ex. Everything came to a conclusion eventually, Coming home from a party one night, in the early hours ,as a passenger with 2 other friends in the rear seat, a close friend driving ,his girl friend in the passenger front seat. We were smashed off the road, the guy who hit us I found out later had a heart attack and was probably already dead. The car went over an embankment and rolled several times. Those in the rear received injuries but not major ones. The driver and girlfriend were killed, she dying squashed in the car and he on the way to hospital. The roof had to be cut off and the car basically cut up to get us out.Naturally the rescue unit concentrated on getting the badly injured out and just set up drips for shock ,for us that were trapped. This was a life changing incident for me and finalised all my previous decisions. It seemed it took most of the day to get us out, but it was more like 4 hours.

The dancing years.

2007-12-31T21:07:00.001+02:00

I had been quite seriously injured by the car accident. My legs were weak and I basically had to relearn to walk. The few disco's I had gone too I had been adopted by the Jamaican girls from my school, I had a natural rhythm and could reggae or do northern soul or ska with the best of them and not look white, if you know what I mean. Average Brit had the rhythmic response of a sanitary towel and danced so tight ,must of had a stick up the backside. Only age and booze loosen them up or maybe it has changed, I wouldn't know. But taking the attitude and the actions of a partying British holiday maker here ,it hasn't changed. I had been told that I could not be repaired , my pelvis will collapse soon and the head of my femur none existent ,prepare for a wheel chair. I started upper body muscle exercises to give =me the strength to pull myself around.
My day started in pain and ended with a hip dislocating agony, every day. Work or play I suffered. But the greatest thing about dancing was that it strengthened my hip muscles,wore my hip bone away daily so it still could function after a fashion. Only as the day wore on the pain tired the muscles and eventually they would not hold the hip and it would pop out of the socket. It hurt like hell, the only way was to force it back into place and get off of my legs . But I had fun made some friends but met hundreds of people, went all over the place in Europe and partied. I met all types and seemed to just fit in, but always on my terms. There was the public me and the private person I am. I don't believe in lying as my memory isn't good enough to lie. Rather say nothing or the truth and it will not come back and bite you. The people I knew in one persona did not know the other. I think this is what made my first wife confused and she was also not so firm in her grasp of reality. I will not say much about her , I cocked it up and it would have ended at one time or another no matter what. I wasn't ready and I wasn't the person she fooled herself into believing I was. I just hope she had a happy and successful life and remain happy with her second husband.I haven't seen her in 25 years and it worked out all the better for me. I will skip a few years as they are only of interest to me and will chat about my return home to South Africa in my next post.

Direction in life, slave to a trade.

2007-12-31T21:05:00.001+02:00

Well, after a brief discussion with my father, one sided ,I was told that I must get a job or get out. So I did both. it was the beginnings of the seventies, strikes and a down turn in the economy made finding a job with training and prospects almost a hopeless pursuit. Not having the option of a government training scheme, due to my health and being now regarded as disabled from the accident. I spent 6 months in fill in jobs, having to work 3 jobs to stay afloat. Eventually landing a toolmaker apprenticeship. Now up until then I had never ever been near a machine shop, not even at school. I had signed on for 5 years, my first salary was £5 80p, my board was £5 a week, bus fare to technicon £1. So it was sit and work weekends as a selfservice automated petrol attendant in St Paul Bristol, a nice quiet neighbourhood, I think not. Drugs , muggings , rapes and prostitution the usual daily past time. Sounds like Cape Town inner city surrounds, today. A place of Georgian and early Victorian tenements. Waste building sites,empty derelict houses and the usual misfits of rampant urban decay. Wednesdays was grab a granny night at the local locarno dance room, another place to make a few bucks.
The most urgent need was transport, my first vehicle was an ancient clapped out Ford Anglia,tyres , spares, etc. midnight spares over the wall at local scrap yards. Petrol supplies, siphons, gallon can and a can with the side cut out for the six inch nail petrol extraction method. I got by with my innocent looking face and my ability to think on my feet to keep out of the laws hands. I'm not proud of it ,but it was what was done and would feel very p..d if it was done to me today. We change hopefully as we age and grow. In some respects I had a good apprenticeship, having to work to fine tolerances on first world war machines made you be innovative. How do I know they predated the first world war, easy consider a steam powered, shaft to belt driven machines with the ministry of war plaque certifying that they were up to standard and certified for war production. Lucky for me I was not thick and applied myself at tech, passing my exams with either a credit or more usual distinctions, I also found that I had the ready ability to visualise a 2d drawing in 3d, could problem solve and had a natural instinct of how to do things. More useful than any degree with no experience and no ability. My life altered in these years, I fitted in I sounded English , I looked British and had a way with the girls , also I could dance. My next post is about my dancing years.

The years 13 to 17 cont.,

2007-12-26T19:13:00.001+02:00

The event to have leave the greatest mark occurred at 20h30 on 23 December 1971. That evening I was knocked down by a hit and run driver on a pedestrian crossing. Traffic light controlled, he must have been drunk and just carried on without slowing down. The funny thing is I felt nothing, no pain at the time just a numbness, I would learn it was a shock mechanism, lucky me. I guy I knew helped me home, I actually walked, seeing the state I was in my parents phoned an ambulance. By the time it arrived I had swollen to 3 times my normal size , my skin stretching and turning a steely blue. I had swollen so much that the way I sat is how I was on the stretcher. I was later discovered to have a fractured left leg, a broken pelvis, a fracture right hip. Broken ribs on my left side, broken right collar bone and dislocated shoulder and a compression fracture of two neck vertebrae and a cracked skull. Still conscious they induced an 18 day comma whilst they fought my massive internal bleeding and reduce the swelling so they could repair me. For 4 months I was a truly coloured person going thru all the hues of a rainbow before my colour normalised. It was nearly a year before I left hospital only to return 2 months later too stay for 4 months to fix some of the damage.
If ever I find out who knocked me down I would extract a slow and painful revenge ,leaving them to suffer a life of remaining agony and if they died I wish I could bring them back so I could inflict more suffering. Nice aren't I, don't you believe it, revenge has a sweet taste and can be savoured for a long time.

Most of the schist I went thru is caused by the results of this accident and the ensuing problems it caused thru the years. I also believe this is the time when I contracted the Hep C Virus, which 25 years later ,would destroy my health almost completely.
Because of being in and out of hospital my education suffered and I never achieved the results I needed then to go to University .I could have rewritten a few months later but my father refused to allow this so I had to find work. 17 years old I left school after achieving 7 "O" levels. Without a clue what I wanted to do.

The years 13 to 17

2007-12-26T19:12:00.001+02:00

These were probably the lowest of my life. Arriving in Europe the change of climate was not good to me, my already damaged joints didn't take to the damp ,cold conditions. My bleeding episodes from Haemophilia were becoming more frequent, nose bleeds almost constant. I think if diagnosed, I would have been declared clinically depressed until I was in my 20s. I learned to hate school, become introverted and not form friendships. Two reasons one I was foreign and confusing to the British kids,(South African whites were the whipping boys for the xenophobia of the radical activist movements of the 60s and 70's.) and I was tall, large framed and bruised and bled easily. My parents never accepted my haemophilia or my youngest brothers. Gangs of children , eager to show how tough they were would call me out to fight, I never had a fight until I lived in Bristol, but I soon learned. Win or loose I always suffered because of bleeds and there was competition from the so called tough guys to give me the most spectacular facial bruising. A gang of boys would come to our door and call me out, my parents would send me out to fight as they reckoned I must stand up for myself. I used to have the snot knocked out of me but I always went for the instigator, the leader of the group and usually hurt them a good deal before numbers got on top of me. Over the years I learned how to defend myself, ways of most efficiently causing the most damage for an economy of effort and I became hard and heartless. I used my anger and fear and adrenaline to use and do what ever I could to kill the object of my anger. I came close on many occasions , but luck and a cold reasoning separateness stopped me from actually doing the deed. I'm old, overweight and ill nowadays but still will give a good showing of myself if put into a corner . To show from those years are broken fingers,some several times, broken hands, stab wounds, broken nose and cheek bones( the nose fixed after my cheek was broken and repaired) and my jaw broken 3 time in 5 different places.
Our family were poor, no disgrace in that, but you become the butt of ridicule with the children in your area. My clothes were always second hand, no school uniforms , a change of clothing not available, usually only 3 of anything , one on, one to be washed and one washed. Shoes were almost luxury items ,one pair worn completely out and stuffed with cardboard and paper when the soles wore through. To help out I got little jobs, paper boy morning and evening, gardening helper and as a bakers boy. I eventually earned the same as an adult working in the bakery, every evening for 3 hours ,from 5 until 3 on Saturdays and from 8 until 1 on Sundays. I was allowed to keep £2 by my father , which eventually I used to cloth myself , the rest went to the house hold. There was no free time ,if I wasn't working I had to shop, look after my brothers, cook and clean and when needed labour for my father when he was building. Tough , but I learned self reliance, how to cook and bake. I still use what I learned about building from those days today.

The road thru Bristol Continued

2007-12-26T19:11:00.001+02:00

We moved into the house two weeks before Christmas, our goods from Singapore where still on the way by boat.The house was decrepit, most of the windows broken, some of the water pipes and fittings stolen. Most of the inside doors hung broken or warped. No carpets, curtains, or working lights. That night my father and us boys collected scrap wood so we could have a fire and light of sorts. Wrapped in the clothes in our suitcases we spent the first couple of nights on the floor. Luckily my father was still receiving a salary from he navy , but nowhere near his previous pay. No active service pay or family allowance. He was on basic salary, for the next 18 months as he trained for his job as a stone mason. A second hand mattress, two old blankets to cover us , food, plastic sheeting for the windows, a couple of pots and a frying pan, a second hand 2 plate stove, some electric cabling and a couple of light bulbs and most important 2 cwt of coal. The cash was wiped out. What saved us was 3 weeks after Xmas my mums father sent me and my brothers £10 as a present. It was a cold and miserable introduction to the City. To keep warm we stripped out the rotten wooden floors and joists, doors and broken window frames. In May my parents got a windfall of child allowance back pay, not a lot but enough to buy two beds and some bedding. We had also spent time in getting some sort of living area cleared and tidied up. The good floor boards and joists from some rooms were scavenged to replace those rotten in others. Two rooms were made livable by this means. The years of accumulated detritus was cleared from the back garden, what could be burned kept us warm. We made curtains from old sheets and stripped and painted the walls. Just us no aid, my dad and mum were too self sufficient and proud ,to chase up welfare aid from the navy. But in those days it was a case of one department gives and a few weeks later ,another takes it away. (Apparently 40 Years on it has not changed.) After Xmas I was enrolled at school 1 year lower than my previous grade as I was already in secondary school in Singapore, what a farce that was.

The road thru Bristol

2007-12-19T20:48:00.001+02:00

It was the end of August when we arrived in Bristol, from 35 c to 12 c. A big change , the majority of our clothes ,summer weight for the east. One jersey apiece. Shoes not suitable for European winters. My fathers mother was going to put us up until we could find somewhere. We weren't there 3 days when she started on my mother, saying my mother was only fit to be an African maid and that me and my brothers were coloureds. Funny really as my mothers family were Dutch Afrikaners, my father German Jew, the problem was my mother wasn't Jewish. Which was daft because my gran was a not practicing Jew and gave up the religion long before her divorce from my Grand father. Still we were told to go ,I never saw her again for 12 years and didn't really know her at all. With only his travelling allowance from the navy my father approached the council housing office, when he got married he had registered for a house so he asked for someplace until we could sort things out. Their solution , my brothers and I could go into a home and my mother and father into a temporary welfare shelter. Not bad I suppose for someone who had seen active service for his country, He just lost it in the office ,almost posted the mans head up his arse and walked out. Homeless in Bristol in the middle of winter, so my parents started phoning. we never slept for two nights it was to cold so we stayed in Templemeads station with our bags on the platform. How ever it came about we came across a German Lady who I will always remember as Aunt Lisalotte, her husband an ex soldier was the caretaker of an old derelict house in the Whitehall area of Bristol. Without knowing us ,she looked after us for a week I will always have a place in my heart for her. My Father managed to get a mortgage and bought the heap of bricks that would become home.

Still walking

2007-12-19T13:31:00.001+02:00

The early 60's was a difficult time in Asia the 2ND world war was fresh and new nationalism was coming to a head. The scars to the civilian population was still to heal, the apparent desertion by the allies and the cruelty by the occupying forces yet to be a memory. America was slowly becoming embroiled in Vietnam, so it was into this cauldron that my family entered. The British and foreign forces stationed on Singapore took advantage of the colonial history of these islands, living like tomorrow will never come. House parties, card parties, party parties the people lived like rajahs. Clothes, made on the spot, cheap cars, large houses, wonderful food it was a place you never wanted to leave. As a child we formed transient friendships with others, family's moving on to different bases or accessionally as it happened several times going home ,as their father was Mia or Kia, my first little crush ended that way as the little girl of my dreams' father, an American airman ,was Mia believed killed. My brothers and I lived a' Lord of the Flies' life. Death was evident on a daily basis and we sort of got inured to it, more of a fascination than terrifying. We used to swim at Changi and it still occasionally was littered with the bones of those who died or were killed at the prison of war camp.We used to drive up Malaya to Thailand on the jungle roads, often built by prisoners of war, pill boxes spaced at intervals along it, each Kilometre paid for with lives. Malaya was still wild the jungle encroaching on the road evidence and sights of wild animals everywhere, One night when travelling my father left the road , he had almost hit two elephants who were feeding at the road side at night. The rusting residue of war still showing their skeletonised remains. Back to the theme; The change of weather was a bit rough as my bleeding episodes were getting more severe, Raymond was severely affected by the damage to his spine at birth and he was to under go 8 operations in 4 years, This is one reason we ended up staying 7 years in Malaya. The British military hospital had the best surgeons with experience of fixing injuries caused by war it was natural to use them to repair Raymond so he could walk after a fashion. This they achieved and it is surprising in how much non surgical bits the attached to his legs to lengthen and strengthen them.