i hit my funny bone

I only want chronically ill people to read this, everyone else please leave the room:

Sometimes I forget that I am sick. Not because sickness is manageable to the point of ease, if only. But because it has soaked in and I can’t see it anymore. It’s entrenched, right down to the bone, the new normal, never-ending, feeling bad as a base level, just got to get on with things. I heard some non-sick people talking about the flu and my eyes glazed over. I often speak to a sick friend about how our bad days are like the flu, but our flu isn’t limited to flu season. Post-exertional malaise comes in the form of aching limbs, a sore throat, a cold head, tenderness, an empty head, and heaviness. That’s how I feel whenever I wake up. That’s how I feel when I come back from Tesco after carrying the milk home.

It’s funny, isn’t it. I forget the sickness is there because it’s always there. I don’t wake up every day announcing I have the flu and calling in sick; when I’ve done more than I can handle and these feelings arrive, it isn’t exceptional. I just expect it. When somebody I know gets sick now, I feel more empathetic than ever because we’re sharing something; our planets are closer for a moment. But it’s hard as well for other reasons I barely want to admit — and if you are still reading this as a healthy person, this is your out.

When normal-people get normal-sick, their normal-sickness ends. It’s not that I don’t want it to end, it’s more like… everybody else has left on the lifeboats but there was no room for me so I’m watching them vanish into the distance. Glad they are safe but I wish I was safe too. And maybe more than that, the difficult feeling is like: I wish people rushed to find me a lifeboat, or kept rushing — continuous. And as I write that, I don’t believe it. It’s only half a wish, the second half; the quietest of thoughts in my head.

It is nice to forget I am not well. It is nice to have a conversation with somebody I haven’t seen since 2019 when they don’t say something that reveals they’ve seen all the sadness I have posted online about Long Covid over the past almost-2 years. It is hard when I see somebody I haven’t seen since 2019 and they scrunch up their face and tell me I’m looking good. They mean well — they mean so, so well — but I don’t want to look any which way. Don’t bring the terribly precarious state of my body into the fore. Let’s pretend we are two floating heads bumping into each other. Casual planets. That it’s no big deal that I have struggled to get here wanting to have an hour of pretending I’m normal, only for you to remind me I am not.

It’s hard, it’s hard, it’s hard. Everyone is nice. I am the monster for finding these things upsetting. So when people talk about the normal temporary flu, or when they point out that I’m not invisible, I remember I am ill and I feel bereft.

Yesterday, my light sensitivity was hurting the right half of my head; my muscles were sore all over but especially in my legs. I went into a shop and because of my clumsiness, I accidentally knocked my elbow. It was just a light tap, really. But a few hours later, it was still hurting as if it had just happened seconds ago. I kept imagining my elbow was a cymbal that has been struck hard; vibrating without quietening at all, going on and on, a metal pain. It’s the day after when I’m writing this and the feeling is still distracting me. What should have been a quick funny bone moment that comes and goes is now entering its 24th hour because my nervous system is so fucked.

And the funny bone and the flu and the people who see me and want to be nice — it all breaks the bubble, and it makes me miss my sick friends, and it makes me want to hide, and it makes me want to go back in time and emigrate to New Zealand and avoid COVID like the plague — which is what I was doing anyway, still no idea how I got it. The other half of this difficulty is that sometimes I want people to bring it up; on the bad days, even if the badness isn’t visible on my face or in my words, I want people to say ‘how is your POTS today?’ instead of ‘how are you?’ Like it’s a question I crave and wait for. I want the people outside of my body to speak to the specifics inside it. I want us to draw the pain out of my invisible insides and out into the open where we can wrestle it (like we can when we are sick at the same time; and that’s why I miss my sick friends, because the access intimacy is so special and current and easy).

I expect I’ll go back and forth on this forever. Wanting to ignore it, wanting to acknowledge it. Wanting other people to ignore it, wanting them to acknowledge it with me. It’s hard when a feeling or a thought can’t settle, but my body can’t either so it makes sense. I have to just let it go.