Why I can’t spend my life in bed . . .

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?

Flustered retreat.

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.

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5 thoughts on “Why I can’t spend my life in bed . . .

  1. Can you lie down on your settee, like you used to? Your legs would be raised that way.

    There’s a newer replacement to Gabapentin. I think it’s called Pregabalin. Anyway some people find it better than Gabapentin; less side effects.

  2. Oh Ron, what can I say? You are having a really rough day and it’s understandable that you need to explode every now and then.
    I spent nearly a year in my bedroom/bed as I couldn’t stand for long periods due to being on the zimmer frame and how much that hurt to get around. Being on the bed for all that time made me lose track of time, I was depressed, because I felt so low I was in even more pain, I was in continues pain all of the time and I felt like I was a burden to John. I lost my sense of worth and I wanted so much to be able to do things around the house again. I became suicidal and my CPN came to visit me three times a week.
    Having the leg amputated gave me back my freedom, my sense of self-worth and as each day has passed I have been able to do that little bit more 🙂 I am becoming more independent and the pain and depression have been lifted from my face.
    Give your tablets time to work, ask for higher doses of Morphine and keep a care plan with the nurses, the doctor and, if you can, get a CPN and work out a care plan with them as well.
    Sending hugs xx

    • As I always tell people with ME, the worst thing you can do – unless you lose all mobility, and then only for as short a time as possible – is take to your bed – you’ll just get weaker and might never get out. I’ve seen it happen.

      My problem is that no-one is taking responsibility for anything. GPs won’t fund the dressings I need, for example, and nurses in my view aren’t making enough fuss – it should be very much a case of you referred this guy to us and now you won’t pay – what the hell are we supposed to do? And even if they get the dressings, all they’ll do is keep it clean and me comfortable – it won’t cure anything. They’ve been treating a guy in my building for 7 years – it doesn’t bear thinking about, even if I had 7 years, which is about as unlikely as Cameron being elected pope. I doubt I’ve got 2. Which is why I want something doing – I don’t want to waste what time I do have having dressing changed every day but making no progress

      Horrified by my GP’s attitude too – if medicine fails, surgery has to take up the slack. Claiming there’s no surgical option – when there clearly is – is obscene. Surgery terrifies me, always has, but if someone was willing to take this damned leg tomorrow, they could have it.

      To be honest, Jay, I don’t think I need a CPN – I wasn’t depressed, I was desperate and in terrible pain. Mind you, it might give me another lever.

      It seems to be the morphine that’s causing the problems,too. I didn’t take any Gabapentin today and got all the problems I had last night. Tomorrow I’ll take Gabapentin but not morphine, and compare notes.

      Take care, Jay.

      Night.

      Ron.

  3. Tricia is correct about Pregabalin, a similar drug to Gabapentin but many people do report far fewer side effects; a tour around the Fibro pages on FB will offer loads of info about this.

    Other then that all I can offer is whilst you’re so rightly angry, you’ll have the energy to keep fighting,

    All best love as always xx

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