On Fibromyalgia

I haven’t had a flare-up this bad in a long time.

I don’t really talk much about the fibromyalgia, I’m shy about it and always worry that talking about it will come across the wrong way, like I’m farming sympathy or something. But Adriel thought maybe I should, on the off chance that someone might stumble along who has it and doesn’t know it and might read about it and think “holy crap that sounds like me, maybe I’m not crazy afterall!” So…here goes!

Currently I’m sitting on the couch staring through a brain fog of fatigue in which I can no longer understand how collision works. I’m frantically making a game for an audience of one, and they don’t have much time left, and I have to finish this game and I’m running out of time but I can’t understand how collision works anymore.

It would be prudent to leave the problem for now and go to  bed, but I’m in so much pain that it’s easier just to sit here awhile longer, even though I’m exhausted. And if I got to the bed anyway I probably couldn’t sleep because, you know, pain. I get mine in my chest and arms and hands and hips and back and sometimes some other joints.

There’s nothing to be done about the pain. It doesn’t work like pain you can take stuff for. The best strategy is to pretend to not be in pain 😀 This works on most days but not on a bad day, and today is a bad day.

Most days aren’t so bad. My flare-ups often get kicked off by drastic shifts in barometric pressure, which meant it was terrible living back in the wild storms of Kentucky, but in mild, consistent-weathered SoCal I feel like 80% of a normal person about 90% of the time. These are good numbers! Good enough that I got to stop taking brain medicine to balance out my pain threshold, and good enough that sometimes I wonder if maybe I’m fine afterall and don’t have anything wrong with me (a trip back East during a cold front is all it takes to remind me otherwise, or a day like today). Other people with fibromylagia have it much, much worse than me, which is maybe why I’m shy to talk about it. Why should I complain when I feel like 80% of a normal person 90% of the time? What better numbers could I possibly ask for!

The worst thing about my whole experience with this nonsense wasn’t the pain, though. It was having loved ones imply through the best of intentions that perhaps the pain was all in my head. Afterall, you don’t look sick, and you’ve been to like 4 different doctors and all the tests are come back normal. Are you sure you’re not just making this up?

Sing praises to doctor #5, though, for diagnosing me, and giving me a term to grasp, and relief that it’s not progressive, and a way of fighting the worry by being able to say “it’s just that my body is stupid, there’s nothing to be done, so on we go!”. And also for this research, which I can finally start showing to people as like  “hey, look, they’re maybe starting to figure this out now. See? I’m not making it up, guys. Please believe me now?”

But man, that look, you never forget that look. That timid, worried smile that you know is only out of love and concern and good intentions, and the suggestion that perhaps, just maybe, the pain is made up. That hurt goes straight to the heart, and drags down lines of self doubt and frustration and a touch or two of despair with it until there’s a whole mess of stuff stuck down there. I still carry the hurt, and wonder if they still don’t believe me, especially now since I’m doing so well in this climate.

So it’s easier to just not bring it up.

But then, that makes days like today hard, because I no longer know how to seek comfort. Kind people who sense things are amiss and nose you about what may be wrong, those people are a blessing, but end up with a long story dumped in their laps that maybe they weren’t prepared for.

Anyway, there it is, the thing I don’t really talk about much. Possibly it affects my creative work in some way, but I tend to ignore it most of the time, so perhaps not. Maybe it’ll do some good to get it out there.