Dear Fibro…

Fibromyalgia-photo4

You know, I’ve had quite enough of fibromyalgia, thank you, and it can fuck right off. But of course, it’s a chronic illness and, as yet, incurable so I guess that’s not going to happen any time soon.

Today, the bottom of my neck is very sore – I have a couple of fused vertebrae there anyway (woohoo for arthritis) but the fibro makes it a lot worse. My right pinky toe is giving me gyp. I can’t touch the muscles in my calves without wincing in pain. My right arm aches, oh, such a dull, bone-deep ache with waves of sharp pain coming and going on top. I like to think of my arm as one of Bach’s two part inventions. Or maybe a three part as my elbow isn’t exactly pain free either, despite many steroid injections and an operation.

Then there’s my right upper leg which is, in my native dialect, loupin’. And my ankle. And did I mention my hands and fingers? Oops, I forgot my hips too. Silly me.

In case you think it’s “just” pain, let’s talk about the IBS. In fact, let’s not as I’m bored of it myself and I won’t put you through the reality of it.

And did I mention exhaustion? No, I don’t mean tired. I don’t mean the woo-what-a-party-I’d-better-have-a-wee-lie-in-at-the-weeken kind of tired. I mean the putting-one-foot-in-front-of-the-other kind of exhaustion that sleep, if and when it comes, has no effect on; the feeling of waking up every bit as tired as when you fell asleep.

There’s another symptom the doctors like to call cognitive impairment. I call it the stupids. I forget what I’m saying half way through a sentence, lose concentration and take at least twice as long to write anything.

Until only a couple of years ago, I was ageing well. I didn’t look in my 50s, even though I had white hair. But now? I’ve aged at least ten years in the past two and I’m angry, so very, fucking raging at what this illness has done to me. I am a shadow of my former self and have lost so much of what used to be me. I can’t really make plans as I can’t guarantee I’ll feel well enough to do anything on a given day. I’m unreliable and not half as much fun as before.

I’m well off compared to many, I know. I feel bad for moaning when there are so many others really suffering, but I have nowhere else to direct my rage. I can either sit and feel sorry for myself or rage against the illness, shaking a fist and giving it a good talking to.

And the first person to tell me I don’t look ill will get a swift kick up the arse, even if it takes my last spoon to do it.


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5 responses to “Dear Fibro…”

  1. Margot Kinberg Avatar

    People who think fibro is ‘not that big a deal’ have never hhad to deal with it. I give credit to anyone who deals with fibro on a regular basis and still gets through the day.

    1. Jackie Aitchison Avatar
      Jackie Aitchison

      I am sorry Nettie, and Please don’t take it the wrong way, but I just howled with laughter! I have had many a similar rant , and I was not laughing at your pain – never ever – but just the honesty of what you are saying and the the language!

      Love and hugs and I hope some relief comes soon xxxx

      1. nettie Avatar
        nettie

        Bless you, Jackie, I know you’d never laugh *at* me. I’m glad you had a laugh – it keeps us going xxx

    2. nettie Avatar
      nettie

      Thank you, Margot x

  2. Lisa Shambrook Avatar

    Keep shaking a fist at it, Nettie, having lived with CFS for many years, I have an idea of your exhaustion and debilitation, but not the pain…hope it eases soon x

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