It’s been only three days since I took to my wheelchair more or less full time, and I have no doubt at all that this is the way forward.
It’s not perfect – my flat is largely unsuitable but I don’t want to move as my neighbours are reasonably quiet – and if you’ve never lived in a flat, you have no idea how important that can be.
There’s another reason, too – I don’t have the spoons to survive a move. My last move, five years ago, wiped me out, and I’m a hell of a lot worse now than I was then.
Even in my wheelchair I still have, by normal standards, a hell of a lot of pain. By my personal standards, and those of many other chronic, intransigent, pain sufferers, I have a hell of a lot less pain than I would have otherwise.
Changes are needed, though. The inaccessible kitchen can’t be changed, I’ll either have to live with that or get used to living on ready meals and rubbish supermarket bread. Since I’m not prepared to compromise on food – I have just one meal a day, and the idea of that being microwaved crap does not thrill me at all – I’ll have to live with the pain. For as long as I can, anyway.
Where change can and must be made is in the bedroom. At night I have to take a bunch of stuff in there with me, including drugs for overnight, and drugs for in the morning, my phone, a Kindle, and a jug of water (sometimes a tablet computer too), and I can’t use my chair for that. I could use my powerchair but that presents its own problems. So, for now at least, it has to be on foot. We’re only talking a few yards, maybe 20 in total (multiple trips – I use a crutch indoors – which leaves me able to carry just one or two small items at a time
Getting up again must also change. Sitting up to take my meds, or to pee, sets off the pain in my leg and it is absolutely horrendous – it is, without a doubt, the worst pain of my entire day, and the one which is most likely to trigger thoughts of just chugging all my Oramorph at once (though the evening breakthrough runs it a very close second and goes on for much longer).
What I need to be able to do is transfer from bed to chair quickly, before the pain strikes, and back again at night equally quickly, which means parking my chair alongside the bed and for which I just do not have the room.
That has to change.
The problem is that the room serves as bedroom, library, kitchen annex, garage and shed!
So I had a thought. By my clockwork bed is a small chest of drawers with legs that unscrew. I can remove the legs and move the carcase into the living room, where I can glue it onto the top of a desk while maintaining easy access to the contents of both. The bedroom space freed up will take my chair and will also allow me to use my powerchair for the transfer of me and my goods and chattels to the bedroom, thus obviating the need to walk and generate pain – problem solved.
Damn – I’m good!
The final stage can then follow – the removal of anything that is surplus to requirements. Except books – no such thing as a surplus book. Then I will have the room to put all my wheels – manual chair, two powerchairs (one midwheel, one rear-wheel drive), and a class 3 scooter, back into use.
The reason? Well, as the prospect of surgery retreats (the bloody surgeon has gone back on everything he said in August in favour of amputation, and now wants to focus on compression – that’s been tried three times and three times it’s made me much worse; there’s not going to be a fourth time), I’ve discovered that with the current level of analgesia, and my new-found status as a full-time wheelie, the pain is largely tolerable. It all depends on whether the plan outlined above succeeds in shutting down the breakthrough crises at either end of the day.
PS – if you’re wondering just what distance I need to walk to generate intolerable pain, it’s less than 6 yards. Yes, kiddies, it really is that bad, even with 340mg a day of morphine under my belt 130mg Zomorph b.d. plus Oramorph 10ml every 6 hours. Currently I have the latter down to twice a day, getting up and going to bed. Today (dressing change), I’ve had 3 doses. I’m just about to go to bed at 00.30. I took the last dose 45 minutes ago. There might yet be another.