Friday, July 20, 2012


Only people with MS (or those who love someone with MS) get it when I snicker when people say "But you're looking okay." or "But you look so good."

I suspect that it is only people with MS (and possibly other nerve disorders... I don't really know about them) who will understand what I mean when I say - I have never been more aware of the apple of my right cheek or my left eyelid more than I have been this week.

My face, specifically the muscle situated between my nose and the orbit of my eye has been dancing on and off for a couple of days. It took over for my left top eyelid that had been doing the cha-cha - causing a half wink with each spasm - for a few days at the beginning of the week.

I have had muscles I didn't even know existed decide to go into an intense spasm for a couple of minutes to a couple of hours in the past couple of years. The thing of it is (and I am intensely grateful for this) is that it doesn't hurt. It just moves. Up and down or side to side  or some combination of the two for however long it's going to do it, and then stops as quickly as it started.

From time to time the spasms will go on for so long it feels like that part of my body is tired. Right now my right cheek feels like it has been overused and it wants to rest. The closest thing I can compare it to is when you spend an inordinate amount of time clenching your jaw or smiling (like on your wedding day). My right cheek feels like it has done too much movement recently that it's not use to doing. My face is tired. It's been tired for days.

My neurologist just shrugs when I ask if there's anything I can do for this or any of the other small irritating symptoms that go with MS. I'm fairly certain that research into things like jumping muscles (as opposed to very painful muscle cramping and neuralgia) and numb fingertips and the ends of toes aren't really high on the priority list of MS related problems to solve.

They are, however, pretty much the only daily reminder I have of having MS. I live much like anybody else, with some limits on how far I can walk and for how long I can be standing and I have a tendency to get confused when I am tired. But if walking, standing or staying up late aren't part of our interaction then you probably wouldn't have a clue.

Unless you see me half wink at your or notice that my face is doing it's best Ginger Rogers impersonation.

1 comment:

  1. When I was jumping through hoops to go on leave for medical reasons last quarter, the thing I heard most (including 3 times in a single conversation with a single person) was "but you look fine!" So hard not to roll my eyes right out of my head. I look fine, what the fuck ever, at that point in time I was sick more often than I was well and had been for months. Christ.

    Also, I didn't know that about small muscle tremors. It's aggravating when one of my orbital muscles starts twitching out, and that usually lasts less than 30 seconds for me. The idea of that lasting for minutes on end makes me feel murdery.

    Congrats on not succumbing to the murder urge. You are a strong woman.