Δαφνη Ευτυχια Αρθουρος

I haven't been feeling all that well the past couple of days, and my sleep pattern is all confoozled, and every sound in my environment seems TOO LOUD. But today I am, at least, awake and able-to-fake-being-alert (sorta) during daylight, which is something.

Earlier is was playing guitar, listening to it through bone conduction because I had earplugs in to protect me from traffic noises outside -- I was playing my solid-body electric, my usual bedroom guitar, with it pressed up against my jaw -- and I noticed a rather significant amount of reverb in what I was hearing when I played it.

"Rather echo-y," I thought, "are my sinuses way clearer than usual, or is my brain missing? That sounds like a lot of echo for just my sinuses; I bet my brain is gone and the sound is bouncing around my empty skull."

Then I started experimenting with different positions of jaw and tongue to see whether the amount of open space inside my mouth affected how much reverb I heard (not significantly, a counterintuitive result) until I fell asleep again.

Speaking of how-I'm-feeling, faireraven posted a reminder several days ago that this is National Invisible Chronic Illness Awareness Week. I'd planned to write more about that by now but ... with feeling scattered and feeling generally crappy and feeling as though I'm thinking in slow-motion, gee, the chronic illness that makes this personal for me has been getting in the way. Go figure. I'll try to write more about it in a while, if whatever I come up with when I focus on the issue doesn't wind up sounding too whiny when I proofread it. For now, just a couple of thoughts:

I think that by now most of my friends and acquaintences have at least some idea of how fibromyalgia affects me, and I know that at least a few of my friends really understand -- I have some friends who notice even before I do that I'm starting to hit my limits and need to rest before I wind up really hurting myself. It could be worse -- I'm still able to get out and perform, for example, and I'm not dependent on a wheelchair or a powered scooter -- but it keeps me from doing a lot of things I'd like to do, as well as some things that I really need to get done. Being able to perform usually requires being very careful about how much I try to do in the couple of days beforehand to improve my odds of having a decent day body-wise, and often means one to four days after the gig just recovering and not able to accomplish much else. I have fun on stage, but there's a price.

The thing is, nearly everybody who sees me, only sees me on my good days -- or at least my kind-of-manageable days. Sometimes I look pretty good, other times those around me can tell I'm tired, in pain, and struggling to keep going; but on the bad days I never even make it out of the house, so most people don't see that.

And although I know that many of my friends get it, even if they're disappointed when I cancel a social outing due to not feeling well enough, once in a while I still get hit with the "oh that can't be a real problem" mindset from people. Usually of the "why don't you just get a job?" variety (yeah, I'd like to, but it has to be part-time and unscheduled because I don't know ahead of time which hours I'll feel well enough to work each week -- I haven't run into all that many openings like that) ... but a couple of months ago I got dissed and dismissed by a doctor (I know this is not surprising to other fibromyalgia sufferers; the emphasis is for everyone else). I'd gotten referred to a new clinic, and was being seen by a guy filling in for the day for the woman supposed to become my new regular doctor (so with any luck I won't have to deal with him often). I'd been tryng to make it to the doctor for three weeks straight, and it was the first day I'd felt physically capable of walking that far and riding the bus. And when I said I needed some prescriptions renewed, including tramadol (Ultram), and he asked why I needed that and I said, "fibromyalgia," he looked at me skeptically snd said, "How do you know you have fibromyalgia? That's very difficult to diagnose." Duuude! You have my chart right there! I didn't self-diagnose off a checklist on a web site. What I wish I'd thought to say to him then (I was too shocked by his attitude -- there was more than just that comment -- to think of it at the time) was, "Would the opinions of five different rheumatologists over fourteen years count as sufficient expertise for you?"

I guess I didn't look sick. Or he doesn't think fibro is real. Or something. I'm glad he's not my regular doctor.

Anyhow, more on this -- more coherently organized -- later, if I manage to get to it along with all the other things I need to try to accomplish this week. And if I don't, then at least I've gotten around to writing this much.