My sleep pattern is fucked up again and I don’t know why.
I had a pain clinic appointment yesterday. The doctor asked if there’s any specialist I can see about the ME/CFS; when I said no, her eyes widened, she was so surprised. (I just wanted to collapse on the ground.) By the time I got back home, 2.5 hours later, I was bone-achingly tired. My muscles were burning. I still had to work.
I finally told 2 friends who I hadn’t told yet. Here’s what I sent to one, a friend of 8 years who I used to see at least every two, normally every week. We used to go on racing bike rides together. I only spent two hours on this 57th iteration of this message: “Hey you 👋 I hope you’re well, and that you got the old job mess sorted as painlessly as possible! (?) An update from me (I will not call it a “fun fact”, for once, even though I guess it fits my personal definition and I know you’ve always been “fond” of those.) – Turns out I have ME/CFS and POTS, and have had it for 3 years. It’s been progressing very rapidly and turned (is turning) everything here on its head. It’s been somewhat helpful having the diagnosis, mostly to make sense of the weird potpourri of symptoms I’ve been experiencing; it’s also been very hard because of what the diagnosis is.
It’s weird news to share tbh, because I’m still processing and far from figuring out what to say or how; but also because doing things with friends (like, say, bike rides or walks or drinks or going out to concerts) or even just staying in touch has became increasingly impossible as being ill has become my life over such a long time, so it feels like a weird topic to reach out with after a long pause. So instead, I’ve written about 28 versions of this message over the last months that I didn’t send (yet).
At the moment, there’s not much anyone can do (one bonus of this whole thing has been that I finally learned to ask for help. Gold star for me!).
I just wanted you to know, also because I want you to know that I’ve missed hanging out, and I would love to say “let’s hang out again!”, but making + sticking to plans isnt much of a thing atm, so I have no idea how friendships that involve me can work now. But I do know that I still want to hear how you’re doing and what’s going on with you.
❤️ “
I cried multiple times while writing it and had to nudge myself hard to hit the send button.