I am really freaking tired.
But I’ve had 5-7 seizures, so I have good reason—seizures are tiring. I push a button when I feel them coming on, and then a bunch of people come running into my room and ask me a bunch of questions while it’s happening: Where are you? What’s your name? Where’s the ceiling? Can you read this? (Then they hold up a piece of paper that says something about whiskey and water being a popular drink in Texas, and I have to read it aloud.) I’ve been partially conscious during these episodes, so I remember doing these things. It’s weird to be both aware and unable to control yourself.
It doesn’t help that they are depriving me of sleep, too, in an attempt to trigger more seizures to collect more data. I was kept up until 2 am and woken up at 6. And they keep bringing in exercise bikes and treadmills and making me use them (while strapped into that stupid jumper, which is pretty much like wearing a sweat belt). I love getting up and moving around (I am sick and tired of laying around), but I wish I didn’t have to wear the jumper/safety harness.
They tried giving me two medications at once today: a new anti-epileptic (Vimpat) in conjunction with the Keppra I’ve been on for months, and even with those two drugs in my system simultaneously, I am still having seizures. So I don’t know what that means. (It’s kind of scary, to be honest—can this be fixed or not?) And the doctors don’t say much. They just ask me questions and write things down. I’m not sure if they know what it means yet, either.
I’m not as bored as I feared I would be. I’m tired and I want to rip these wires off my head and take a shower and sleep in my own bed, but I am not bored. I have not had time to be bored. Between my exercise regiment, meetings with doctors, a steady stream of visitors, and having seizures, I haven’t had a moment’s peace. (I even had to move to a new room—this one is quieter, which I appreciate, but I’m no less busy here.)
I’m not as frightened as I feared I would be, either. I had visions of convulsions and falls and injuries and strange brain waves and tumor discoveries—I had two seizures on Monday morning before we were even settled into my room, just because I was so nervous about this study, but it hasn’t been bad at all. Everyone here is so great, it’s hard to be scared. The guy who refills the conductor gel in my headdress even itched my scalp for me, and the nurses are so friendly and helpful. (They even take pictures of me when I ask.)
I am tired, true, but I feel safe, I feel cared for, and I know that I am in good hands.
1. This is the thingy that my headdress wires are plugged into, and this thingy is hooked up to a computer. Don't ask me how it works--I have no idea. 2. This kind fellow refills my conductor gel and itches my scalp for me. 3. The second drug they had me try. (I'm not sure if it worked, though. I had two seizures in two hours after taking it.)