Tuesday, December 9, 2008

Ah well what can you do?

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.............

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