What does it mean when people with myalgic encephalomyelitis (m.e.) talk about a crash?

First off,I’m writing this from bed, on my phone, so forgive any creative spelling or innovative phrasing.

How have the last few months been?

I’ve had a good run. Two, maybe three months where my routine (M/T/W rest -with at least one full bed day- Th/F/S/S dressed,do things) has worked. I’ve been able to find time to write both poetry and a daft story or two, amongst the stuff like housework, keeping the garden looking nice, cooking healthy food etc. I’ve even found time to do some paid work, and been asked to take on a permanent role with my copywriting agency (just 4 hours a week, but it feels amazing to be able to say “I’ve got a job”). Things have felt positive.

Despite m.e. I’ve had a good couple of months – this is from my birthday walk

What do you mean by a crash?

Like it says really. My body and brain have stopped. I am breathless when I walk (just from bedroom to bathroom) , I have this weird fizzing through my limbs, I sleep almost constantly and wake feeling like I’ve been run over. At the moment I can still read,but I suspect that will fade later today.

How long will it last?

This is the other joy. I don’t know. Experience tells me that three or four days is usual, but there is always the chance that this could be the one that tips me, the one I don’t recover from.

It’s a scary thing, and every time I crash I curse myself for becoming cavalier over my illness. I get so fed up of having to be careful, having to ask for help that I just plough through; and here we are again. Bed, very little writing, very little work no life – just the neighbours chickens and the cat to entertain me.

What happens next?

I wait. I try to rest. I get up too soon then have to come back to bed. I get cross and frustrated and sad. I dream of having a bath, washing my hair. The worst bit is when I feel a bit better – my brains working, but my body won’t. That’s when I’m most likely to push too far.

This is one of the reasons Covid worries me so (there are a million for everyone, I know). If I catch it, and survive, my body is likely to react the same way as it did when I got the strain of tonsillitis that kicked all this off. Bearing in mind this seems to be a much feistier beast, it’s almost certain that I will end up very ill. It’s important to understand that I’m not “better” I’m just better at managing my health – any change to the balance has a major impact. Contracting C-19 could be devastating.

Writing about m.e. always makes me nervous – some people I considered friends were so unkind when I was first ill (they’re not any nicer now, they’re just not friends) but I think it’s important to talk about. As we see more people struggling to live with long-term symptoms of Covid-19, which bear striking similarities to m.e., an increased level of understanding is essential. And kind.

What can we do?

Send flοwers, kittens, cake and a one way ticket to Abel Tasman. I’m joking (I’m not), for me it’s a case of waiting it out – I’ve a warm safe home to do this in, a very fluffy cat for company and a partner with a great line in fish finger sandwiches, jacket potatoes and mushroomy pasta, so I’m sorted. The hardest thing is understanding how I’m feeling, and not pushing myself to do more. It astounds me that even after seven years, the protestant work ethic is so ingrained that I still believe that if I just work hard enough I’ll push through. My body has told me time and time again this is not true. I need to believe it. And to live in Abel Tasman.

Thanks for reading, it’s good to talk, even if only on a virtual basis.

Keep safe, wear a mask, wash your hands

Kathryn xx

To find out more about Yes to Tigers or a bespoke poetry commission just follow the links or email kathrynannawrites@gmail.com

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