Little boxes! Which one do I fit? — Scope | Disability forum
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Little boxes! Which one do I fit?

Where do I fit? As a multiple injury sufferer (there must be plenty more like me!) it's often difficult to give people a clear enough picture of our situation. "You're looking 'puffy' today"; yes, that'd be the fluid retention, from the renal failure.
"Can't you get a new one?" Well, actually, I've had a 'new one', a transplant for twenty plus years, which was my best bit but, as all good things come to an end sometime, unfortunately I outlived this one.
"So, what is the rush now then?" Well I have to get home to dialyse, it's four times a day, every day. Don't get me wrong, I'm incredibly grateful that these systems are in place, and I MIGHT get a transplant, if I'm incredibly fortunate, but banking on it? Don't be silly, I'd never live if I just waited! Waiting.........?
However, it's the 'living' that exposes us to discovering our limitations. For me it's been a case of learning and adapting to sight with only one eye, keeping moving whilst restricted by arthritis due to much bone damage. It's only 1/2 an inch but the fact is it's missing from one of my legs; the length difference is eased a little by an insert in my shoe, nevertheless, the tendons are all now loose, restricting the range I can move it making all sorts of things more challenging.
luckily, I'm looked after really well; the Renal specialists often know what's happening to me before I notice it, but they need to see me regularly and their appointment days clash with one of my volunteering days. 
Oh yes, of course, I forgot; I live alone at the moment, although I am in a relationship I hope will grow, meaning I do much of my own shopping, cooking, cleaning, gardening and maintaining my transport so that I can get about and do many of these things. At the end of the day I know, yes of course I am rediculously fortunate but, managing all the facets of living with my multiplicity of added difficulties, and with a totally unreliable memory which  so heavily restricts my organising capacity just might be the invisible aspect that is at the root of my worries. 
I feel I can say all this here because, without wanting to bore you all, there must be many of you in the same or similar boats to me who will understand where I'm coming from. It's nice to feel understood (well, a bit anyway!)
Anyway, I can't relax, it's nearly always time to do a dialysis bag change, hopefully my next comments will be more positive!



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