In year 12 I had a dream in which I fell into a coma and woke years later, emaciated and fragile. My peers had left me behind and my good grades now meant nothing. The world went on and I was alive but no longer fully part of it.

In my dramatic moments, it now feels like a premonition of my middle age and the condition that has taken away a lot of my life in a quiet and invisible way the last few years. 

Tomorrow is ME/CFS Awareness Day. The date has been chosen for Florence Nightingale’s birthday as a famous historical figure who is thought to have suffered the condition.

ME/CFS doesn’t get the attention it should.  It’s debilitating but it doesn’t kill you, at least not quickly or obviously. It has a name that is either unpronounceable and misleading (myalgic encephalomyelitis) or a little trivialising (chronic fatigue syndrome). Doctors don’t understand it very well and there’s no universally effective treatments.

It’s usually a postviral condition and I was diagnosed after a suspected covid infection in mid-2023. However, I noticed a slow accumulation of symptoms long before then, including – rather sadly for me as a wine lover – intolerance to alcohol. I have a battery that drains by lunchtime; if I over-exert myself or eat the wrong thing I’ll be stuck in bed for days with all kinds of weird symptoms, including but not only fatigue. (I am in my cursed / blessed bed now, able at least to peck this out on my phone. I’ve been in a crash since Easter, my longest yet.) My Garmin watch tells me how much energy I’m burning through and when I should lie down; it’s helpful but takes over like I’m playing a very unenjoyable video game with my body, keeping my stats in the right zone. A lot of days I’m not able to read books let alone write. Too much time to ruminate, too much staring at the 1950s pale pink wallpaper, not enough energy to do the things that need doing, let alone the things I would like to do.

On the upside, I’ve watched a lot of movies on my phone – in fact I’ve nearly caught up with all the ones I missed when my kids were small. And even though I can’t do all the things I want to do with the kids, I’m always around for them. We talk a lot, I read books to them when I can and have learned to love (some) family movies.

I haven’t stopped writing, either. I’ve slowed down but I haven’t stopped. It seems writing is one of the things some people with ME can still do; our ranks include Susannah Clarke, Lauren Hillenbrand and the late Susan Griffin.

What are my hopes in writing this post? I’ve long wanted to acknowledge this aspect of my life which has been so dominant the last few years. Not writing about it has made me feel less able to write about anything else. ME is prone to stigmatisation and misunderstanding, and I sometimes struggle even with the well-meaning suggestions from people who haven’t had this disease. But I hope in breaking my silence that a weight will lift or a blockage will clear. I also just want to contribute to the collective effort this week to make this invisible illness more visible!

Image: The Dream of St Ursula by Vittore Carpaccio, 1495.