I have written out my audio:
So, Fibromyalgia, I have it. It’s a bit difficult to describe, or a lot difficult. It feels weird and I can’t describe it accurately. I mean, it changes all the time. I might say something to describe how it feels that’s almost right in that moment, but it’s completely off the next.
I could tell you that my wrists feel tight, like they’ve been wrapped up in plastic, or even like something alive has gotten hold of me. But then, it almost feels like my hand isn’t even attached sometimes, like my wrist is gone, or maybe it would be better to say that part of it is missing, it’s exposed, or it’s hollow, with something sharp under the surface. Cos you can’t see anything, even though it really feels like you should be able to see something. You might see me looking at my hand like it’s gonna bite me, but it looks fine. Or, you might see me moving strangely, because something feels out of place and I’m trying to put it right, like I’m doing a jigsaw puzzle. A jigsaw puzzle that has pieces missing. Or maybe there’s more than one puzzle in the same box and I’m trying to sort through it. Because my hands don’t even feel like they’re part of the same set as the rest of me.
My feet never feel like they’re gonna hold my weight, even if know, logically, they almost always do. Part of my brain is just telling me - ‘no, dude, you don’t even have feet, you’ve, they’ve melted, you’ve just got puddles or sponges, you know what maybe they’re made out of rock today, I wouldn’t even try moving those. Which obviously sounds ridiculous, but it’s somehow a pretty compelling argument when it’s being yelled right in my brain. I’m like, wow, yeh, maybe I don’t have feet, I should check that, or, just to be safe, not stand up, ever.
And I always feel like I’m walking funny. Like, I’m on stilts, or I’ve got springs instead of knees. Am I tilting sideways? And sometimes, out of nowhere, I’m suddenly very aware that my torso is just this tub of meat, and it’s stacked on two other tubs of meat, my legs, like sausages. It doesn’t feel very stable, how am I even standing up right now? I feel like I could fall apart at any moment.
Sometimes, when I wake up, I feel like I must have fallen asleep at the beach, and I’ve got sunburn everywhere, or something close to that. Like, something that should be there isn’t, the top layer of my skin has been scraped off. And it’s fucked up that that’s how it feels, but, nothing ever looks wrong.
And my teeth, it feels like I’m gonna open my mouth and they’re all just gonna fall out. If I even feel like I can open my mouth. Sometimes it feels like my jaw has been clamped shut. Which is frustrating, because then it feels like I can’t have a go at my body for dicking me around like it does. Which I feel like I need to be able to do, just to get some distance from the whole thing.
And my back has a mind of its own. It’s always telling me what to do, and it’s like stop, no, no move, not like that. Why the fuck did you think that would be a good idea. And sometimes it’s not even talking to me, it’s having a party, I’m not invited.
So, I’m saying all these crazy things and none of it describes how it literally feels, but I guess the truth is in there somewhere. Maybe it just gives an idea of how weird it is.