So.

So I haven’t really been talking much about my health, as this site has mainly been an escape for me. But I want to write this down (and probably different health issues, in future posts), because I have a new image, one I think can convey how certain things feel to me.

I have multiple sclerosis, or MS. It’s a shibboleth of the tribe that everyone’s course of MS is different. The main way MS presents in me has the unwieldy name of trigeminal neuralgia (TN). I call it my “MS pain” to folks I don’t want to put off with medical Latin. It’s a very sharp pain in my lower right jaw. I’ve likened it to two electrical wires, sparking. Or a metal pick, stabbing me.

When it’s affecting me, I tend to go “Ow!” a lot, and I seem to twitch. The medical aides and nurses, seeing this for the first time, get very concerned and scared. It’s tough for me to tell them what’s going on, because I hurt, and speech has been known to be a trigger. As has swallowing. Or chewing. Or licking my lips. Or touching my skin in that area. Or drinking. Not all at the same time — every time is different.

I’ve had people ask if the body movements are spasms, or seizures. Today I realized I had a better image: I’m flinching, or wincing. I’m trying to get away from an intermittent pain source. But, being in the nerve, I can’t. Doesn’t stop me from trying, though. But I offer as a hypothetical — if I was repeatedly sticking a needle into your jaw, would you move?

This is why when the pain lasts a bit longer, I won’t move as much. I get used to the pain as a constant (though I still cry out from it — as both Ulrika and our dog Kaylee can attest, from an incident a few years ago). But when it really is off and on — bzzt! bzzt! bzzt! — I flinch each time. Which is probably why it looks so strange. I’m wincing from something no one can see. (Note: in an earlier era, it might have been off to Bedlam for me. It’s interesting to speculate how many inmates were experiencing something we’d diagnose differently today.)

Anyway… I thought it better described how I feel, and was worth documenting.