An audio version of this post is available here.

The back of my neck feels as though someone is standing on it, in army boots. Standing on one foot, with all their weight. When it feels like this I often wake in the middle of the night (or indeed the middle of the afternoon), from a dream where someone was trying to break my neck by bending my head forward with brute force.

You know you’re “fatigued” (as the NHS calls it) when, finally, your brain stops accurately processing sensory input and just goes “fuck it” and starts throwing any old crap it can find at you, presenting sensory fiction indistinguishable from sensory fact. In short: it is not uncommon to hallucinate if you have ME/CFS. A shape appears on the edge of your vision, neither threatening nor friendly unless you interpret it so. Merely a shape, dark on the very edge of the doorway until you look. Standing just behind/beside you, until you look. Being me, I interpret this as a loved one I cannot quite see, but believe me, it’s a deliberate interpretation. One wouldn’t want to let the reins slip on that one.

And then olfactory myths: the scent of wet earth, the scent of almonds, the scent of a bonfire, incense, a bonfire, earth. Most are delightful experiences, but the bonfire hallucination needs checking. I go around the plug sockets in that room. Check everything attached to them, use my hands, eyes, nose to spread the risk of one sense not reporting accurately. Nothing is smouldering. Nothing is even warm. I set an alarm on my phone to check again in 15 minutes (without an alarm I will not reliably remember to: I may well fall asleep). After that second check, I will mentally chalk “persistent smell of bonfire” onto the list of today’s brain wonks and ignore it.

Having hallucinations isn’t the same thing as being crazy. I know they’re hallucinations. At no point do I think they’re anything else. I’m quite rational. It’s just my brain is firing randomly, throwing interpretations at me that I can see are fictional, most of which (even the bonfire, maybe especially the bonfire), are beautiful because I’m more wired for beauty than fear. But I can see, if I were one step to the left, one more possible reason suicide is such a popular hobby among the sufferers of ME/CFS. My hallucinations are not frightening. And I am intelligent enough to not believe my own eyes, ears, nose, or skin. Again, I am lucky.

Things could go either way. Either two days from now I will spring forth like some infuriating fat Athena from the brow of Zeus, paintbrush in hand, feeling tons better. Or by this time next week I’ll be too ill to eat and it’s back on juicing vegetables again and at least 2mo completely housebound.

There is one curious benefit to all this, and it is a very hard one to articulate*: when your system is so exhausted that it stops distinguishing between what’s in your subconscious and what’s happening (and indeed, that issue stops mattering to you, provided you check the house isn’t on fire), one’s experience of the world becomes a poem. There are assonances, rhymes, metaphors. One’s thoughts scan, repeat, trip-fall-flop down the side of Normal Behaviour’s steep mountain, roll into the River WTF at its toes, are carried off, become fish, reach the sea, hunt, spawn, shoal, shhhh. You do the things you wanted to do, feel the things you wanted to feel if rationality did not sit like a boulder in the cave mouth.

You tell people things about yourself.

You become fearless.

* Srsly, try telling your GP this.

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4 Responses to Fearless

  1. Fles says:

    I think you are fearless – that’s why you’re so lovely: you have passion and belief and a sense of fairness and of defiance. You are one of the most aware people that it has been my privilege to encounter. Thanks again for sharing with us the sensation of a world that many of us will (fortunately?) never experience.

  2. Lou Burkett says:

    Brutally honest as ever Chills x
    thank you Lou

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