There was I thinking home dialysis was supposed to end all the problems. Recently I've had pain in my feet that reached a crescendo yesterday, making it difficult for me to walk; it is linked to the dialysis in some way but I don't know how. NB: Googling unspecified medical conditions only makes it worse: I cried myself to sleep some time after midnight convinced I was going to end up as a cripple, living out my days in untreatable discomfort. When I woke up this morning, I couldn't bare to look at Dermot so I went and had a swim which vastly improved both the pain and my mood. I came home, spent a genial hour cleaning and tidying, ate some Snack-a-Jacks then switched Dermot on in preparation for a relaxed session during which I planned to read The Guardian and do some work.
Three hours later, having lost the fluid I'd intended to remove through crying, the emergency on-call technician was still in my bedroom, having abandoned his gardening and Thai bride and their little baby (her picture was his screen saver) to attend to the breakdown - mine and Dermot's. Usually I can just about handle all the frustration and anxiety the dialysis evokes but today I lost it; I had a total melt down and I am so grateful Mother H-B was on hand to rush round and save me, because I genuinely couldn't cope today. That hasn't happened very often.
Just as we thought we had got Dermot working, the fatal spanner light flashed for an unprecedented second time: cue another half hour of re-starting and fiddling until he was finally ready for action. I put my needles in, having removed and binned the first set hours ago and after a tentative start, Dermot has behaved himself. So far.
I don't mind niggles; they are to be expected with such a complex and technical bit of kit. But what is making me well-up, again, as I write, is the fact that I can no longer rely on this clunking great machine to work. The whole point of starting home haemo was so that I could relax, so that I could go out into the world and start participating in life again and - God forbid - maybe even enjoy myself occasionally. The caveat was that I would need to devote more time and brain power to my dialysis and undertake more frequent sessions; dialysing isn't what you might describe as enjoyable, but I had made my peace with doing this. If I can't trust that the machine is going to work when I switch it on, or if doing a session requires an extra hour on top of the already allotted five to fix the problems, then I am basically right back where I started in terms of caution and restriction, except now I have what amounts to a noisy, useless heap of junk taking up a quarter of my bedroom.
In the eighteen years since I first developed kidney failure, I am proud of the fact I have only rarely thought that what has happened to me is unjust; shit happens to everyone and I am no more or less deserving than anyone else. And even though I am sitting here trying to convince myself that a temperamental dialysis machine, a wasted session and a ruined night out barely register on the relative Shit-o-meter, it just feels a bit...unfair. There, I've said it. I am being petulant and self-pitying, and I apologise...I am happy to live a life being reliant on a dialysis machine; all I ask is that it works.
Three hours later, having lost the fluid I'd intended to remove through crying, the emergency on-call technician was still in my bedroom, having abandoned his gardening and Thai bride and their little baby (her picture was his screen saver) to attend to the breakdown - mine and Dermot's. Usually I can just about handle all the frustration and anxiety the dialysis evokes but today I lost it; I had a total melt down and I am so grateful Mother H-B was on hand to rush round and save me, because I genuinely couldn't cope today. That hasn't happened very often.
Just as we thought we had got Dermot working, the fatal spanner light flashed for an unprecedented second time: cue another half hour of re-starting and fiddling until he was finally ready for action. I put my needles in, having removed and binned the first set hours ago and after a tentative start, Dermot has behaved himself. So far.
I don't mind niggles; they are to be expected with such a complex and technical bit of kit. But what is making me well-up, again, as I write, is the fact that I can no longer rely on this clunking great machine to work. The whole point of starting home haemo was so that I could relax, so that I could go out into the world and start participating in life again and - God forbid - maybe even enjoy myself occasionally. The caveat was that I would need to devote more time and brain power to my dialysis and undertake more frequent sessions; dialysing isn't what you might describe as enjoyable, but I had made my peace with doing this. If I can't trust that the machine is going to work when I switch it on, or if doing a session requires an extra hour on top of the already allotted five to fix the problems, then I am basically right back where I started in terms of caution and restriction, except now I have what amounts to a noisy, useless heap of junk taking up a quarter of my bedroom.
In the eighteen years since I first developed kidney failure, I am proud of the fact I have only rarely thought that what has happened to me is unjust; shit happens to everyone and I am no more or less deserving than anyone else. And even though I am sitting here trying to convince myself that a temperamental dialysis machine, a wasted session and a ruined night out barely register on the relative Shit-o-meter, it just feels a bit...unfair. There, I've said it. I am being petulant and self-pitying, and I apologise...I am happy to live a life being reliant on a dialysis machine; all I ask is that it works.
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