For a couple of months my district nurses have been telling me I must rest in bed during the day. They did it again today, too, and after my shitty night I was in no mood, and lost it! I said, angrily, look, I’ll take to my bed, no problem – you find someone to keep me fed and watered, how’s that sound?
Intellectually, I know that I need to be in bed, and I know if I’m not I might lose a leg** if, as I suspect, the main problem is with the circulation (or my sanity – the pain is so far off the scale it’s in another universe – again! – and all I get from my pain meds is hallucinations, both auditory and visual), but I can’t – the logistics are simply impossible.
**Right now, that’s an option I’d be happy with.
If I’m in bed, who answers the door when parcels arrive (I’m housebound, I shop entirely online), who lets the electricity company in when they arrive at entirely random intervals to read the meter? Who keeps me fed and watered, or takes the garbage out? I’m stuffed with diuretics (heart problems too), and I haven’t figured out a way delegate the peeing every 20-30 minutes.
Then I have my blog to maintain, articles to write, email to sort through and answer as required, and a Twitter community to stay in touch with, but not in bed as there is no convenient socket to plug in my laptop. And trailing an extension cable across the floor isn’t really compatible with crutches.
And there’s another, seriously worrying, reason why I can’t – won’t – spend my life in bed – I’ll deteriorate, physically, so fast and so comprehensively I might never recover, as I still haven’t recovered from 6 weeks in hospital, or the crisis that put me there.
Earlier, in the late 80s, early 90s, when my ME was at its worst, I spent a lot of time in bed, and watched my muscles vanish like snow at the Gates of Hell (Did you know that Hell was originally the Lord of the Underworld, not the underworld itself? That’s OK, no charge.). I was constantly working out with weights just to maintain the status quo.
I have no wish to repeat that, not least because I can’t even lift my damn weights, never mind work out with them.
I’m in a bad place right now, physically and emotionally, and I think being in bed, no matter how much it might help physically (if it was feasible), it would, emotionally, drive me down like John Henry’s hammer.
And I might never get back up again.