Just a quick post to say that I was discharged from the neurology ward on Monday. I’m now back at home, settling into a slowed-down version of my routine.
I left with increased doses of two of the three anticonvulsants that I was already taking and with a fourth—Brivlera, known as Briviact in the States—added to the mix. Such a heavy medication load isn’t ideal in the long term, but since it seems to have quieted my seizures, making it safe for me to abandon the sterile chaos of the hospital for the messy comfort of our apartment, I’m willing to stick with it until things have further stabilized and I’ve had a chance to follow up with my epileptologist. Not that I have much choice, of course, but I like the illusion of one.
It’s so, so nice to be back to my normal environment; however, fewer than forty-eight hours have passed, and I’ve already been reminded more than once that I have to take things easy. I slept for over ten hours last night and took a one-and-a-half-hour nap yesterday afternoon (this, from a very reluctant napper); my thinking has been pretty cloudy; I’ve had the chills, even though it’s objectively not cold out. I’m guessing that I need to adjust to Brivlera and to the increased activity that comes with not lying in bed all day. I need to be gentle with myself. The rest will come.
One of the aspects that I appreciated most in terms of the care that I received during this hospitalization was that the neurologists that I saw made me an active partner when deciding whether or not I should be discharged, ensuring that I knew that I could stay as long as I needed to in order to feel safe enough to return home. It made a big difference not to feel pushed out the door, and while I don’t think I lingered any longer than I would have otherwise, it was nice to feel a sense of agency. In the end, we determined collaboratively that enough was in place on Monday that I could comfortably leave; even then, though, I was told that if my seizures spike again, I should go back.
And so, here I am, with no real answers and what I hope are interim, not permanent, solutions. But that’s OK. I’ve achieved some temporary equilibrium, and that’s good enough for now.