June 23rd, 2022 – 1,366

It’s fitting that it’s pride month when I got this diagnosis, because the feeling of not having to hide that I’m in constant pain feels identical to the feeling of relief I got when I stopped hiding my pansexuality. It’s that feeling you don’t have to pretend, or act a certain way or even just worry about who I talk to about what. I ordered two things today, both from the UK Ehlers-Danlos Society: a wristband, and a medical card. I’m going to keep the latter at the front of my card-sleeve wallet, and the former on my wrist, and hopefully that’ll have me covered in case any medical emergencies come up going forwards. Thankfully I shouldn’t be at risk of dislocations unless I push myself too hard as I’ve no history of them, but if one happens I want to have clear things to point to that won’t rely on me being articulate.

I won’t sugarcoat it though, I have been in a dark place since Tuesday. It’s not been self pitying, at least for the most part. I felt a bit of that when I tried walking on my stick in town yesterday and found it deeply uncomfortable to be seen like that. It’s a hang up I need to get over, because I don’t look at other people who use mobility aids and such like that, I only look at myself in that way. It’s still offensive to those people that I view myself that way so if I won’t be nice to myself then I should do it for them if nothing else. But most of my dark thoughts revolve around how this will affect my friends and family. I hope physio works, and I have the discipline to maintain exercises, but there’s no point pretending I won’t deteriorate over time.

On writing, TUS is now 82k, which is amazing to me. There’s 3k still missing, and I’ve identified the three chapters I need to add it to, as well as how much to each. That means that by Sunday, I may have this novel finally at a range comparable with the others in the series. And on Monday, I might at last kickstart TEL. It’s a new beginning, and the world is doing a lot of changing and staying the same around me. Keeping it all straight is hard to do, but in my writing, that’s one place I’m still in control. Jean-Dominique Bauby wrote The Diving Bell and the Butterfly with one eyelid, and so long as I have any movement available to me at all, there will always be a way to hit target. I am in control.