Thoughts

I have Chronic Fatigue Syndrome

Addressed to my guilty conscience.
To be very blunt (at least to start off with):

A few weeks ago, I was diagnosed with ME/Chronic Fatigue Syndrome. My symptoms include exercise intolerance, post-exertional malaise, joint and muscle pain akin to fibromyalgia, flu-like symptoms, sleep disturbances, and cognitive dysfunction; the latter of which I go into particular detail about later on. My illness is now so disabling that I am largely housebound. I get out once or twice a week, and I (mostly) look fine while I’m doing it, but afterwards I am utterly wiped out. I finished my degree early, because I was not able to do the work any more. I am far too ill to get a job, or learn to drive, or live by myself, or to do any of the other things I’d planned post-university.

I have a good chance of recovery, but it could take a very long time. I will not see my specialist again for another six months, because that’s how long it will take for me to notice even tiny improvements.

I don’t know how I’m managing to write. Today was a particularly bad day, because on top of everything else I have a cold that I don’t seem to be strong enough to fight off. I stayed in bed until three, watching TV on my tablet. I’ve had multiple sweating episodes, so I can smell myself from here, but I can’t face having a bath just yet, as that will take up considerable energy too. I have been wearing the same pyjama top for nearly twenty-four hours straight. My hair is so greasy it’s formed little strands, and the gaps in-between are giving me trypophobia. But I have days, like today, when I’m so tired, so angry, and so much in pain that for once I can’t rest. I feel like I’ll burst. The strain of picking at the keyboard kind of alleviates it a bit.

 

I could talk about symptoms forever. I could list reams and reams of things, each different for every individual. And you could sit here, disbelievingly, not understanding.

Or I could tell you that I’m tied to a wall with elastic. And some days I have the strength to carry on walking like there’s nothing slowing me down, and other days I let it snap me back. You can’t see the wall, or the strings. You see me, but you don’t see what’s holding me back, and without it, I look fine.

You don’t know what’s inside my head. Because I can’t get it out. Even now, as I write, I’m struggling to find the words, struggling to express how trapped I am inside my own head. How do you find the words to say that you can’t find the words to say? That your thoughts don’t feel like language at all, so when you try to speak them they won’t process? That you know you used to be cleverer than this? That the explanation is on the tip of your tongue, that the clouds are just parting, just letting a glimpse of light through – but that’s all I’ll ever get. That sometimes, oftentimes, you just can’t think of the answer. Cognitive dysfunction sounds all at once so scary and so daft – my brain’s not working – but it isn’t. It really is not working. I never knew this could happen, and neither did you, but that does not mean it is not real. And now I regret not putting more of me out there while I still could, because perhaps you can’t see the difference. Perhaps that’s what it is.

 

I’m writing a lot at the moment because I’m desperately unhappy, so unhappy I feel like I’m coming apart at the seams, so unhappy that some days I’d like to pull myself apart, just for change of scene. Because writing is the one thing that I know I want to do, the one thing I’ve never been depressed enough to lose interest in, and I feel like I’m tying myself to my younger self, to the thing that’s not changed. Because even if I’m typing absolute garbage, utter babble, in that moment my heart is racing and my mind is pulled taught and I’m happy, I’m alive, I have purpose for once in the fog that usually makes up my days.

~

I wrote those three sections – I can’t remember when. Maybe a week or so ago? Longer? Since then I have antibiotics for what turned out to be a chest infection and painkillers that don’t help much with the pain but make me sleep even more (if such a thing were even possible) so I guess that’s sort of a solution? I don’t feel unhappy any more, but I still seem to be writing a lot, which I suppose is the ideal situation.

If I was shy and stand-offish before, now I am a statue. When you blink I’m coming after myself.

The best thing to do seems to be to ignore the whole situation and take each day as it comes. I can cope with one sick day. I can get a little bit done, and look forward to all I’m going to when I’m better. Whenever that is.

~

If you’d like to find out more about ME/CFS:

http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

What is ME/CFS?

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