busybee fluffy rambles

My last-ditch effort at treating my fibromyalgia was by taking Lyrica. I’ve only been on a starting dose to try to acclimate to it, but it’s done nothing but made me super fatigued, and hasn’t done anything to help my pain levels. The fatigue has made it hard for me to get anything done at all, and ever since starting it, my ability to drive (or feel safe driving, anyway) has plummeted, which has made me even more isolated and weird than before.

A couple weeks ago I missed a dose and that was also excruciating, so I’m working on tapering off of it and just hoping that I can regain some semblance of being able to, y'know, do things. Because the one consistent thing I have going on in my life is making music and I haven’t even been able to do that because I end up just sleeping all day.

And even with the Lyrica I’m still in excruciating pain a lot of the time and I’d really like not to be!

There’s a lot of buzz about a newly-approved fibromyalgia treatment which appears to be a targeted sleep aid. Hopefully it comes to market soon, although color me skeptical about whether it’d actually be effective.

I’m also growing increasingly frustrated at the state of the music world right now. Listeners only want to listen on streaming platforms, specifically Spotify, and have been conditioned to think that moving to anything else is difficult. The whole idea of collecting music (even digitally) has completely disappeared, and so even Bandcamp/iTunes sales are in the shitter (not to mention all of the other digital sales platforms like Mirlo and Subvert). People keep on talking about how there needs to be an independent streaming platform but such an idea would certainly not go very well either.

And independent musicians are being screwed over constantly. Even getting your stuff on the predatory streaming platforms is difficult and expensive and costs way more than you could ever hope to get back out of it (because the distributors are also predatory), unless you’re good at playing the social media game, which I’m not, and have no interest in.

I’m still waiting to hear back about my disability hearing from a month ago. The hearing went well but the radio silence is deafening. But even if I do get on disability, that only helps with some day-to-day things. I still need a better social life.

Most of my socialization these days is via VRChat, but everything there is so scattered, and based around the very same things I don’t really have the spoons for in real life either, like hanging out in bars/clubs or doing activities with people. There’s only a handful of people I’ve found who I genuinely like spending time with and most of them aren’t on very much, or they get on after my body has decided it’s time to turn into a pumpkin.

So my fallback to VRChat is things like Discord and Mastodon, but the timbre of all of the conversations there has also started to feel Bad. I’ve ended up leaving a few Discord communities over interpersonal things I just can’t deal with, because everything is A Lot and everyone has their own emotional needs but there’s just so much asymmetry in how that manifests, and I always feel like I get the short end of the stick where I’m expected to give infinite grace to others but am never extended any leeway when I make even the smallest misstep, and this has just led to this avalanche of all of my social connections just evaporating on me. Every time I get upset at things, more people decide I’m not worth being around, making me even more upset. It’s a vicious cycle that I have no idea how to break out of.

One of the most frustrating things that keeps happening: I have a minor falling-out with someone, which causes me to take a break from a shared space, which then leads to me being absent, and then when I come back to the space, this leads people to think that my lack of presence is a lack of caring, or alternately expect me to be completely up-to-date with everything that happened while I was gone, and either way, my return is met with suspicion rather than fondness, and then what started out as a pause turns into a permanent severing.

And this keeps happening.

I’ve been in a pretty dark place a lot of the time lately, and sometimes the only thing that stops me from just ending it all is my feeling of obligations to others. It isn’t even optimism for things getting better or enjoyment of my own life that keeps me going. I mean, everything I enjoy doing ends up bringing so much pain that I just can’t even do it anyway. So what else can I do except just keep on taking up space while being stuck at home and hope that something changes?

It’s also frustrating that the things I’ve done never seem to be enough; they just give people expectations of what more will come in the future, and then those expectations become disappointments when I only have so much time and energy to give to things that I care about. Especially when those things I care about just keep on turning to shit.

I would love to know how to break these patterns. I want to feel like I deserve to take up the space that I do, and that the space I’m in is a nice one to inhabit. Not just physically, but socially. There are so few people these days who I would actually consider to be a friend, and I see them so rarely, and when I do see them it always has Conditions attached.

Most of all, I need to meet more people and see more things, but every way I can think of to do that is even more draining and pain-inducing. My social battery hasn’t just run flat, it’s turned into a spicy pillow. Where am I supposed to go from here?