Today is M.E Awareness Day

I’ve forgotten that I am sick.

Well, I say I’ve forgotten, but that’s not entirely true.

I know it’s there. I can feel it in the shaking of my limbs, in the burning of my bones, the stumbling on the stairs.

So no, it’s not that I’ve forgotten.

It’s more that I’m ignoring it – the fact that I have a chronic illness, one that requires I rest more than most, sit more than most, eat chocolate a lot more than most. (I made that last one up, but it’s a hill I’m prepared to die on!)

I don’t know why I am pretending I’m not sick.

It’s not like it’s a surprise, like I’m suddenly unable to do all the stuff I used to take for granted.

Being well, being not-sick, is such a distant memory that after all these years, I’m not sure I remember what it was like.

Imagine waking up and feeling, well, normal?

Imagine waking up and thinking you fancy a walk, so you grab a quick shower, make your breakfast, and off you go for a walk, just like that. No resting, no planning, no getting halfway through a shower and abandoning all as you can barely stand. No pain, no shaking, just going for a walk.

Crazy.

Pretending I’m not sick doesn’t work out so well.

 Sometimes I can do it for a few hours, normally because of an emergency or crisis. But then my body reminds me that we don’t do this kind of thing, collapsing on the sofa in a heap, leaving me stranded there. Sometimes it takes months to resurface.

Remembering that I’m sick, I sort myself out. I try to be good. I sit down. Take a nap and another little rest. The life of an eighty-year-old since I was 36, there’s a constant tension between what I want to do and what my body has in mind.

Get a job. Drive to Scotland. Do the Garden. Meet a friend.

All those crazy dreams, while my body suggests, and then insists, that we just lie down.

Sometimes I forget that I’m sick and decide I’m going to get fit.

Sick of sitting on the sofa, not my natural habitat, I plan. 

Mondays and Wednesdays – gentle yoga

Tuesday – weights

Thursday – rest

Friday – legs day

I’m not an idiot. I take it slow. I ignore the pain, telling myself it’s because I’m so unfit and sit down too much.

‘Sitting down knocks years off your life!’ a headline screams. I struggle to stand.

By Tuesday, I’m wondering if I’ll manage to walk into the kitchen. A book in my hands, I count that as weights and legs and call it quits.

Months later, I pop into the library, forgetting I need a wheelchair, that it’s not just an accessory, that I’m not lazy and just having a laugh!

Minutes later, stranded by the door, the librarian beams that it’s great to see me out of my chair before I confess that I can no longer stand. Mortified, I ask for help back to my car, where I sit again, my skin shimmering with sweat, trying not to forget.

And it’s just like forgetting.

It’s like the last 20 years didn’t happen because, for a brief moment, I thought it was fine, for a brief moment, I felt like I could get away with it.

Maybe it’s all in my head.

And then it’s not.

Then it’s most definitely in my legs and bones. Then it’s pain and fatigue, and a headache that wipes the smile off my face. Then it’s the weight of the duvet crushing me and my hair being too heavy on my scalp, the pain needle sharp, the light through the closed blinds searing the eyes from my skull.

Then I remember I live with being sick.

Then I remember that I can’t ignore the fact that my body will not behave how I want it to.

I stay in bed, first one day, and then the next and then the next. Not a nice staying in bed, not snuggling down with Netflix and endless chocolate. There is no joy here. I simply endure. After a few more days, the bed feels safe again, no longer a prison of fatigue. The fear that I’ll be trapped here eases.

I’ve spent years in bed, months lost beneath the covers. Missing from my own life. I write to you from here often.

But then I make it downstairs, then to the garden. Then, if I’m good, out in the wheelie with the dog.

I know it could be worse.  And you’d think I’d know better. After all this time.

But sometimes I want to forget.

Key Facts | WAMES (Working for ME in Wales)

Images reproduced from WAMES.