I’ve been taking it pretty easy in the time that’s elapsed since I wrote my last blog entry, hence the lack of communication. This is because I’ve (re)discovered something important and obvious, something that I seemingly forget and then relearn every so often: that in my case, with less work (“work” in the broadest sense of the word) come fewer seizures, probably since the more rested I am, the more likely my brain is to chill out. I like it when my brain is chill. Keep things chill, brain.
How have I been “taking it pretty easy”? Over the past week, I have mostly
- read for pleasure (because I’m attempting to be kind to and nonjudgmental with myself),
- eaten cake (because I’m working with a dietitian to gain some weight, and she said that I could decide whether I wanted to add the extra calories via Ensure or baked goods; the choice wasn’t difficult [I should probably write about this dietitian thing some other time; remind me if I don’t]),
- seen friends (because socializing is essential to my well-being),
- napped (because I’m trying to do a better job of acknowledging how much sleep I require in order to function properly), and
- gone to appointments (because my obligations haven’t, unfortunately, completely disappeared).
It turns out that the combination of reading, cake eating, socializing, napping, and being a responsible patient is, for me, together with my cocktail of AEDs and my VNS, the recipe for better seizure control.¹ My tonic-clonic seizures have, indeed, more or less disappeared. I’ve still been having partials, but I can deal with those much more easily than I can handle seizures of the convulsive variety. Yes, they’re a pain in the neck, especially for those who witness them and have to deal with Seizure Me #saintlyhusband. I bounce back from them relatively quickly, however, and I don’t usually injure myself while they’re happening. Sure, I consistently say and do objectively ridiculous things during and after my partial seizures, but since I’m transitioning into a post-embarrassment state at this point in my epilepsy life, I’m not usually all that concerned by Seizure Me’s words and deeds.
My “acquired parents” are now visiting from North Carolina, so I’m especially motivated to keep my seizures under better control since I really, really want to be able to fully enjoy their days here. (One of our best friends, also from NC, will arrive the day after they leave; it’s going to be a great week!) It’s hard when time with loved ones is marred by unpleasant brain activity that leads to ER visits or hospital stays, and I’m determined that there won’t be any neurological emergencies while they’re here. I’m not, of course, in full control of what my brain decides to do, but I’m slowly learning that how I live on a day-to-day basis has a major impact on my seizure frequency. And no, that shouldn’t be a revelation, given how many times I’ve been told that sleep, stress, etc. can increase seizures.
Naps and cake (and balanced meals) it is.
¹I feel compelled to add a disclaimer: this is in no way medical advice. Listen to your doctor(s). I’m a doctor “of something,” not a brain one.