Happy ME day?

5 min read

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e-s-d's avatar

Today, the 12th, is CFS/ME awareness day.  It's a manky condition that is like your worst nightmare hangover, but without the fun before-hand and one that ain't going away.

Looking at me you'd not know I have it, most likely.  You might think I'm drunk as I walk down the road, but that's just my balance being off.  You might think I'm slow and lazy, but that's because I just can't go any faster.  You might see me sat with my head in my hands, but I'm not trying to get your attention - it just hurts.

So what is it exactly?  Annoyingly, no-one's really sure.  There was a bit of excitement as a virus was identified as a possible culprit, but unfortunately that seems to have been a non-starter.  It acts like an immuno-deficiency in many ways, leaving you permanently run-down.  You know how you're more likely to get a cold/infection when you've been busy, stressed and on the go for a week?  Yeah, just like that, it leaves you open.

Directly it causes all-sorts of symptoms, migraines and headaches, muscle twitches, aches, pains, swollen glands, "brain fog" (mental confusion), memory loss, inability to regulate your own body temperature... there's more, plenty more, so varied are the symptoms.

Yet one of the biggest themes I've found is that ME/CFS sufferers find ourselves doubted.  We doubt ourselves when we're in a good-patch (called a "boom") - we wonder if we were ever really ill, we wonder if we're finally getting better, we hope...  only for it to be dashed when we hit the next bad-patch (called a "bust").  Others doubt us too - they cannot see our symptoms and they cannot feel what we feel.  We get called malingerers, we get called lazy, work-shy, scroungers.  Almost as if I CHOSE to give up my job and plunge my family into debt.  "Look at you, there's nothing wrong with you!" is a statement I've heard far too many times.
And it's not just strangers.  Friends and family can doubt us - from their point of view all they often see is us resting, and us saying we can't make it to x or do y.
Sometimes it's important strangers - medical professionals sometimes fail to accept the condition, despite national and international professional-body guidance on it.  This is very dangerous when it comes to one of us claiming a sickness benefit, for example.  We get turned away and find ourselves having to fight to prove we're ill, and one thing we're really not up to is the fight.  It's not that I object to the idea of showing that you actually are ill for the purposes of sickness benefits, but the automatic assumption that you must be lying.  I've seen it no-end of times.

"So there's got to be a treatment?", you may ask.  The answer's largely "no".  There's "pacing and grading", which basically means "do less and it hurts less".  Beyond that you're into pain management and alternative therapies, and some of them are completely bonkers - "ozone therapy", where they infuse your blood with ozone!  Mechanical eyeball massager things, melatonin-inducing light setups, even illicit drugs.

So what's left?  Well, we wait, and we hope it goes away.  And until it does, we try and get by as best we can.

Some of us are utterly permanently bed-bound and unable to even feed ourselves.  Some of us are more fortunate and only have mild-level symptoms.  Most are in the middle.

So what do I want?  Your sympathy?  Your good wishes?  No, not really.  I just want you to be aware, given that it's our awareness day, that we're out there.  We're not lazy, we're not workshy, we're not lying, we're not snubbing you by not coming to the pub or by saying "I've gotta go, I need to lay down".  Remember that for me, and I'll consider my work here done :)

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