So, it turns out I’m not really very good at this adapting lark.
On an evolutionary scale, I’d be stuck somewhere around the fish-with-lungs kind of level – broaching the edges of a vast transformation but not quite grasping the basics of the new world laying itself out before me.
Everything is tiring. Not just averagely sleep-making, I mean tiring. Moving from one room to another if I have to slip off my O2 to change supply (because, let’s face it, I’m not about to raise the subject of O2 lines with Allied any time soon, even if it was an idea that appealed to me, which it doesn’t) can lead to a required recovery period of several minutes if not longer and the merest hint of further activity leaves me body screaming for bed.
The biggest problem I have is learning to listen to what my body’s telling me and then making the appropriate decision and acting upon it.
For instance: this evening I am beside myself with tiredness. I didn’t sleep incredibly well, waking fairly often through the night in discomfort and from odd dreams. Today, my wonderful Godson came to visit and we had a great day playing games and watching movies and just generally hanging out. But it’s left me completely shattered.
The most sensible course of action would seem to be to take myself off to bed and sleep, but he left at 6pm, which means that if I’d slept for an hour or more at that point, which I desperately wanted to, I know that come 11pm tonight when I’ve finished my evening IVs, I’d have been unable to get myself off to sleep.
So I tried just taking myself to bed and relaxing with a book, which worked for a while before tiredness crept in and made the book a blur, on top of which the urge to spend a little more time with my soon-departing bro crept in.
I came downstairs and settled in the kitchen (comfortable but not sleep-able) to read some of the Sunday paper and we had some left-over scraps from lunch for our supper with Mum and Dad before he left.
But I’m still no better off in the tiredness stakes, and I don’t really know what to do about it. I know that, listening to my body, I should be in bed right now, but I have a dose of drugs to do in an hour’s time, which will take an hour to go through, and if I fall asleep before then and have to wake up for them, that’ll be my night totally ruined.
I suppose one could argue that if I have nothing to do during the days, perhaps it doesn’t really matter what time I sleep, so long as I’m getting enough rest in during the day. I could, for example, live like a badger and stay up all night watching the Ashes and take myself to bed when the day dawns, but I’m not sure that’s the answer.*
For one thing, being up all night on my own I know I wouldn’t feed myself properly then I’d miss all my day-time meals and so end up losing weight, which I really cannot afford to do.
Further to which, if I needed anything, had a nasty turn or my oxygen went funny or anything like that, it would mean rousing the house to come and help me, which I’d be mortified to do – it’s bad enough having to get someone else to make me cups of tea when I want them, or shifting oxygen tanks around on my whims, let alone getting them out of bed when they’re supposed to be resting.
What I really need to do, I think, is to find something which will keep me happily occupied in bed for a large chunk of the day – a computer game, or internet-linked lap-top or the like. The problem with all of those options being that I don’t know how long I’m here for and they’re ridiculously extravagent things to entertain me when there’s a perfectly good TV downstairs.
I just can’t get used to spending a day on a sofa, though. Daytime telly is bad enough (and I still can’t force myself to watch it, no matter how ill I am), but I’m also just not comfy on the sofa all day. Odd, really, given I’d be quite happy in my bed 24/7 if I had summat to occupy myself with.
This is all one big crazy ramble now, largely caused by the constant fight to keep my withering eye-lids from gluing themselves together and calling it a night, but essentially it comes down to an “answers on a postcard” poser, really. Any cunning plans for occupying myself whilst enforcing a strict “not out of bed” rule?
I’m determined to get better at listening and – hopefully, one day – pre-empting my body’s mood swings. I used to be pretty good at it, but I seem to have lost my touch of late. Here’s hoping it’s not too long before I get it back again…
*That’s not to imply that it is common badger behaviour to watch cricket all night, it was more an inference to nocturnal awakenings.