Lousy day. Not terrible, but a bummer. Maybe a multi-day period of lousies.
Nothing horrific, nothing I urgently need advice about, just want to kvetch to my buds.
I’ve been reading others’ posts and thinking, gawd, I’m lucky I’m in much better shape these days, and . . . well. . . I still am! I mean I am in much better shape than when I felt fully incapacitated, and also I’m in much better shape than so many folks who are utterly brutalized by this.
But that doesn’t get to the kvetching. So . . .
I swam Wednesday, and lost track of what lap I was on and what strokes I’d been using. Same thing Friday. Each time, I soldiered on, but have no way of knowing whether I completed my routine. I can call this an epileptic or an MAV event, doesn’t make much difference. It means I think of myself as out of control to some unknown degree, and it also means I am bummed and beat for the rest of the day. My sweetheart reminds me that this is a normal consequence of such episodes.
Today she and I were going to be taken out for dinner by Marc, one of our closest friends, to celebrate our early-February birthdays. The weather’s been very changeable, though, so fuck me. Shortly after getting up, I started feeling it.
Meanwhile, we tried to gain some control over our house, her dusting surfaces, me cleaning shelves, books, records, CDs, DVDs, records &C, plus paddle fans and floors. Well, I’d get up on the ladder and work for a while, and I’d get queasier and queasier, more headachey and dizzy. I’d have to get down. Go back up for a bit, same thing. Often alternating between my gut and my head. Cooked myself some oatmeal, felt better for a bit, then the feeling returned.
I’d lie down or use the toilet and feel somewhat better, and try again. Same damned thing. Eventually
I called Marc to postpone.
My neurotologist has me on a high dose of nortriptaline, in consultation with my neurologist, who has me on a high dose of vimpat, an anti-seizure drug. My neurologist also provided lorazepam for me to take following ictal behavior (clear temporal seizure-type activity) or aura. Fortunately–this goes into the small favors department–I’ve had neither, meaning no twitchies, no quasi-hallucination, no fuzzy-headedness.
I’m awfully glad that I don’t have to take care of anyone or anything today, and that my sweetheart is fully on board with this stuff. I know that others on this board are much less lucky. One thing: in a month, when it’s time for me to give a three-hour seminar, I’m going to have a lorazepam in my shirt pocket.