Tinyletter 17: Exhaustion, woe, adaptation…and a sneaky peek at my book cover


Well, it’s been a while. Sorry. I last wrote to you when everything seemed to be picking up again: H was on the mend, my laptop had survived being run over, and my 40th birthday had passed without incident.

But soon after, life happened. Well, in reality, life continued to happen. I had been suffering from abdominal pain for most of this year, and was charging on through it, as I do, trying to pay no attention. It always takes me a long time to realise I’m in pain anyway – I tend to feel it as confusion and I have to unravel what’s going on. By the end of September, though, there was nothing to be confused about. The grumbling pains that I’d had all summer suddenly erupted into something far harder to ignore.

We’ll move through the weeks that followed with quick montage; tests, antibiotics, painkillers, a dash to casualty, an emergency appointment with a specialist, cameras shoved in unpleasant places, agonising waits to find out just how serious it was. The end result is that I have three kinds of bowel disease, all of which more usually appear in men over 70. Never being one to conform, I’m slightly pleased with this.

I’m still working out how to get back on my feet again, and no advice has been forthcoming yet. I’m taking it very easy and reaching for the painkillers when I have to. It’s boring to talk about, so I won’t. But what took me by surprise is how slowly it had all crept up on me: the incursion of illness, the sense of abiding exhaustion. Only in the aftermath, when I’ve been forced to stop, have I realised what a toll this has been taking on my life. I’ve gradually given up inviting friends over for dinner because I couldn’t face the labour; have been retreating to bed ever-earlier; have surrendered my house to a state of entropy that has seemed beyond my control.

Not once, in all of this, did it occur to me that I wasn’t coping anymore. I didn’t notice I was ill. I didn’t notice I was too exhausted to keep up with normal things. It just slowly happened, and I did nothing about it until I was forced to pay attention.

One of the problems, I think, for autistic people is that were so busy with the work of adapting to the outside world that the serious stuff gets lost in the general struggle. Everything feels difficult anyway, so it didn’t surprise me in the least that my belly always hurt, nor that I was rushing to the bathroom every twenty minutes. Well, I’m paying attention now, and I’m having to push back against some of the expectations of capability that I’ve built around myself. It’s agonising, but it’s also high time.

I spent all of last year writing a memoir about how I learned I was autistic, and I often forget that no-one has had the chance to read it yet. I’ve worked hard to detail the ways in which I don’t cope, and although I feel a little anxious at exposing that to the world, I also can’t wait to explain myself better.

Well, the time is finally close. The Electricity of Every Living Thing can finally be pre-ordered (it’s out in April) as as much-beloved Tinyletter readers, you get the first glimpse of the cover before I start splashing it everywhere like a power-crazed toddler. Here is is. I hope you like it.

The Electricity of Every Living Thing Cover

See you soon,

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