The Future Quite Definitely Has Wheels…

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.

Perspective matters.

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.

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9 thoughts on “The Future Quite Definitely Has Wheels…

    • And today my meds worked properly. Took them at 06.00 on the dot, and still in bed. Got up at 07.30 and, by the time I reached the living room was in agony as usual. However, NOT as usual, my Oramorph kicked in within 10 minutes. So, as long as everything falls into place – timing, and not moving from my bed when I take my meds – everything works as it should. I’m also pretty sure that being able to transfer directly from bed to chair would result in less pain, possibly sufficient not to need my Oramorph at that time, which would free up a dose for the evening.

      And yes, I do know how unacceptable it is to have to juggle essential drugs like this, but my GP is a pillock!

        • Indeed, and within reasonable limits we should be left to get on with it.

          Unfortunately I have the constant threat of having my supply cut off by a GP who is convinced morphine, particularly Oramorph, is going to kill me (given the high doses I’ve taken in the past, before he developed this obsession, if Ora was going to kill, or otherwise harm me, it would have done so. If I am in danger, it’s probably from Zomorph, which remains in my system for 12 hours (in theory, in reality only 8 to 10), whereas Ora is gone in 4.

          He’s just increased Zomorph by 30mg a dose (to 130mg). I chose to introduce it slowly, over 3 days because, although I don’t share his paranoia, I know the risk is real, if slight. He was happy for me to take the full hit all at once.

  1. good to see you have solved your problem of moving things from room to room/ the friend i told you about some time ago who also had problems after having compression … when in her flat had problems with carrying things from one room to another while using her walking stick in one hand. social services solved that by providing a tallish butchers block type piece of furniture on wheels. only no drawers just shelves. wheels were fine on carpet. and she used it to transport her meals from kitchen to table which was in her living room (a rather large room i would love). and dirty pots back again/ plus rubbish from flat to elevator. her scooter was near that. so she used her scooter with rubbish carrier on her knee to go down in elevator to ground floor and along to the rubbish room… another lady i knew used one of these too,. both thought them the bees knees..

    • Yep – got one of those – they’re called kitchen trolleys. However, mine’s been usurped for a different purpose – it now holds all my dressings and associated gubbins. And my laptop.

  2. as we do… i keep putting off going to see about my left calf and ankle swelling with fluid.they know about it. and just give me water tablets which dont seem to do much good. and possibly wont cos im convinced its down tio leaning to my left while on pc thus putting more strain on my left side.other one swells but only a little. nothing to stop me getting a shoe on.. which the other does. .it goes down over night up again within 20 mins or so of getting up. sitting on edge of bed doing my sprays etc. a bit worse during the day after sitting here a couple of hours. had it a lot worse year before last in july when we had that heatwave i must say. but half of me says go see them, other half says aye.. one temp dr said heart failure. (did nothing about it tho,just changed my water tablets from ferusamide to betolonide??? (without walking in to bedroom to find out…something like that)not sure if they helping or not if truths known except the calf muscles don’t feel anything like as painful as they were. so maybe it is.
    anyway. those are observations.. i will go. one day next week when ive a free say (isnt that how it goes?lol)

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