Starting tomorrow, Monday, I’ll be exiled from my flat while my bathroom is converted into a wheelchair-friendly wet room. It’s already been postponed for the better part of a fortnight as I’ve been too ill to put up with the disruption. I did say that if they put it back too far I might be ill again and – Sod’s Law – I am, mainly because the ME part of my dismal package of fuckuppery responds very badly to stress (one of my neighbours who – and it beggars belief – decided to sit it out while chaos surged around him is now a wreck, in a permanent state of rage). Me, I’m getting as far away from it as possible. I’ll be able to sleep here, but that’s all.
To make the best use of the wet room, I need one of these, a shower wheelchair.
The scheme manager (I’m in a supported flat), has contacted Social Services to see if they will provide one. Bizarrely – I’ve been on their books since April 2013 (or 1986 if they look back far enough) – they have decided they can do nothing without a full assessment. I had one in 2013 – all that’s happened since then is that I’ve got very much worse and the Community Nurses can vouch for that.
So it’s going to take three weeks at least until I can get an assessment, and god knows how long after that until I get a decision, with no guarantee it’ll be the right one.
So screw you, Social Services, you’ve been no bloody help since I first made contact with you in 1986. I’ll buy my own, just as I’ve bought every other piece of equipment I’ve ever needed, except my clockwork bed, and that came via the nurses. And then it wasn’t a case of “Please can I have one?”, because I didn’t know I could. It was “You need one and you’re bloody well going to have it!”.
The chair I’m buying is the one in the pic, at £219.99, VAT exempt. I can’t order it until the job’s nearly completed, as I’ve nowhere to keep it other than the bathroom.
One of the very few benefits of being housebound is that I have no social life, and thus little to spend money on except me, and toys to make my life easier.
Something else that falls into the embrace of making my life, if not easier, then at least less painful, is a dressing protector, as I doubt soaking my ulcer in soapy, somewhat second-hand, water will improve it greatly. So I need to keep it dry with something like this. Trouble is, most say “Not suitable for use with open or undressed wounds” and I have a huge open (the shape is irregular but close to 200cm2), but dressed, wound. So would it be suitable? No idea. I’ll ask my nurses, but experience suggests they won’t know. And the one I favour, as it doesn’t rely on potentially painful and damaging stretchy neoprene, is unsuitable for people with vascular problems – like me. I’ve got a horrible feeling I might wind up with a shiny new wet room and still be unable to use it. Sorry, but that’s just not acceptable, and if I have to make my own wound protection gizmo then make it I bloody well will!
I’ve already designed and built a leg support for lymphoedema sufferers that doesn’t put any pressure on damaged tissue and why that didn’t already exist is quite beyond me. Apathy, I suspect, as I posted details online for anyone who fancied making it commercially to do so, free of charge. No takers.
I’m not interested in the money, just in improving the lives of those of us with this dreadful illness, but maybe if I’d demanded royalties, it would have generated some interest? People do tend to associate free with having no value.
I also designed a cup holder for wheelchairs that would fit any frame tube at any angle (most only fit vertical or horizontal tubes). I farmed that out to a couple of companies who claimed to be in the forefront of designing stuff for the disabled community. Again, no takers, and I couldn’t make it myself as it needs workshop facilities that I don’t have, whereas the leg support was a simple assembly job using existing parts.
I already know how I’m going to make the dressing protector as that, too, will feature existing parts, just in a novel configuration.
Actually, one thing that did come via the OT was a perching stool, for the bathroom where it was supremely useless. Part of the problem is that it has arms and a backrest, an impediment in the bathroom** (the wheelchair, above, also has arms, but they flip up out of the way, or can be removed; for the added convenience and pain-free use, I can live with the backrest. The only way to remove either on my perching stool is with a hacksaw. If I owned it, I wouldn’t hesitate, but I don’t.
**My view – others might not feel the same way. Neither of us are wrong!
I’ve tried using it in the kitchen, but that’s where another feature gets in the way. For the sake of stability, the legs are set wide apart laterally. That’s not a problem. The fact that the rear legs are set so far back, also for safety, is.
I was thinking of looking for a bar stool when I came across a folding perching stool. It has no arms, comes with or without a backrest, can be adjusted to a suitable height and folded away when not in use. The £66.50 price tag is off-putting, though, so shopping around is in order.
Which I’m doing but so far, including Amazon (£74.78), everyone else wants more. Highest price so far, £85.40 (prices with the exception of Amazon exclude VAT). I’ll probably go with Amazon. I can get free next-day delivery so taking that into account the price premium is less than a fiver even paying VAT. Worth it for the convenience of knowing when it’s coming.
On Amazon, I always try to second-guess negative reviews because over the years I’ve discovered that you can’t trust them and many of them are the result of user error, and vague complaints about comfort are just too subjective to be useful (please – be specific!). I noticed on the only review for this folding stool that there was, indeed, a useless moan about comfort (did the buyer even know how to set up a perching stool? I have no idea). He’s also been sent a steel one when he’d ordered an aluminium one. Amazon stock both, clearly he’d been sent the wrong version. He moaned about that, too when he should have sent it back. User error off the scale. The guy also complained – bitterly – about the weight. The perching stool I have is steel, and has arms and a backrest. It’s not that heavy so I seriously doubt the folder is.
Of course, if there are 50 reviews and the majority are poor, then there’s clearly something wrong, but a one-off like that above can be safely ignored.
The Amazon price, above, is for the steel version, the aluminium version is a fiver more and, is, I think, intended for shower use.
However, before I part with any money, I’m going to try the perching stool I already have in the kitchen for an extended test. It’s really not comfortable – the seat is board-hard and it’s a bit of a squeeze to get it in, but in it will go, not quite where I want it, but close enough to figure out if I can live with it. If it works out then I’ll get a folder, as there’s just not room to keep it in there permanently while the folder will come down from a couple of feet front to back to a few inches, allowing it to be stashed out of the way.
And then I’ll post a considered review, both here and on Amazon.