busybee fluffy rambles

I’ve been struggling with my fibromyalgia + chronic fatigue lately. So hard for me to do any of the things I want to do. I can push myself into it for something especially compelling but that ends up wiping me out for days afterward. And I feel like I’m missing so much time, too.

Even driving a mile to the grocery store and navigating things there and doing the very basics is A Lot for me right now. Driving is such a large amount of effort and I feel like I can barely make it there and back safely.

Song Fight! Live is this weekend and I’m having a hard time even seeing myself being able to participate in it at this point, at least to the level I want to.

I’m so fucking tired, and then I have people around me shaming me for not being able to do the things I want to do, as if I don’t want to be doing them, as if I can just magically summon the fucking energy that isn’t there.

Everything is just a lot and there isn’t a whole lot of stuff out there filling me with optimism. Like, all of the information about chronic fatigue syndrome is that there’s no treatment, it’s all about ✨managing your energy✨ but I’m already doing the bare minimum to exist and even that is too fucking much for me.

I still have so many songs and stories and games in me but they’re just fucking locked inside.

I need help.

I finally have a disability hearing tomorrow morning. Feel free to send positive vibes, if you’re into such.

I had a long-overdue physical with my doctor last week, and after explaining my various struggles with fibromyalgia, long COVID, and suspected ME/CFS she put me on two new medications, Singulair, for the persistent shortness of breath, and Lyrica (pregabalin), for the chronic pain. I’ve only been on them for a few days but here’s some observations so far:

My breathing problems have cleared up quite a bit, in that I’m not randomly feeling short of breath when I’m just sitting on the couch. So far I haven’t noticed any of its many potential side effects, but I also theoretically shouldn’t be noticing any positive effects this soon either. I haven’t done any significant physical activity so I can’t yet tell whether it’s effective as a prophylactic against exercise-induced asthma (which is the main reason I’ve been told I should be on it for years).

I haven’t noticed any significant reduction in pain, but I did have a day of extreme drowsiness when I started the Lyrica. The drowsiness has already cleared up but I’m still having a bit of “finger no worky” problems at times, and I’m already having the major constipation that happened with gabapentin. Increasing my water intake is always a good idea as would be going back on docusate, although I don’t recall that helping with gabapentin.

I’m definitely feeling a bit dizzier than usual and won’t be driving at all until things settle down a bit. Fortunately there’s Lyft (sigh) and the bus for most of the places I need to go which aren’t in walking distance. I’ve been thinking about getting a cheap electric bike/cargo trike/scooter for grocery and short-distance travel purposes, and that might even be an overall better setup than owning a car anyway.

Also as of late my hypermobility has gotten a lot worse and I am pretty sure I do have some form of EDS (and not just some unspecified “hypermobility spectrum disorder”) after all. So, that’s fun.

My disability hearing is in two weeks and hopefully it goes better than the previous parts of the process. I’m not optimistic.