Hi Friend —
If you haven’t yet, I hope you get your ballot into a collection box somewhere. The election is here, and your voice matters!
Voting aside, I’m feeling pretty exhausted by politics. Literally. Checking the news was actually keeping me up late, especially when the president was in the hospital. I’ve mostly curbed the late-night, NYT-checking impulse now, but my sleep hasn’t quite recovered.
After my inpatient stay at the Jefferson headache clinic in August, I started taking mexiletine for my migraines. It helped. I’d still get migraines most days, but not every day, and most were much shorter and less severe than they had been. For a while, I was getting pretty productive, in a The Tortoise & The Hare sort of way. If I can just consistently carve out a little bit of time to work on creative projects every day, I can do a lot.
Unfortunately, without stable sleep, everything falls apart. I’ve had pretty low quality sleep (insomnia, etc.) for about three weeks now, and my migraines have become intense and almost constant as a result. My schedule is off, my symptoms are up, and my thinking is blurry.
But I do have a lot coming up. Next week, I get a second infusion of Vyepti. My first infusion, in August, was 100mg. Since then, my neurologist has determined that the 100mg dose is just another attempt by insurance to minimize cost at the expense of care. No one benefits at that dose. I’ll be getting 300mg next Thursday, and maybe it will actually help.
Not long after the Vyepti infusion, I have a telemedicine appointment with the psychiatrist at Jefferson Headache Center. He’s a rare bird: a psychiatrist who specializes in headache medicine, who exclusively works at a center that treats the most severe & difficult migraine cases. There are a number of psychotropic drugs that can potentially help with migraines, but we don’t have a lot of studies on them; for many of these drugs, only super specific specialists (like him) can prescribe them to treat headaches. Maybe we’ll come up with something helpful.
I’ve also been talking to a pain psychologist once a week. She specifically trained at Jefferson too. Some of the time, we discuss meditation and relaxation techniques that can reduce suffering. But other times, our talk is more fundamental.
The U.S. is a goal-based, productivity-focused country. A person’s worth gets tied to how much they make. But it’s not feasible to function that way when you’re seriously ill (it’s not really advisable to function that way if you’re healthy, either). One alternative is focusing on values. Instinctively, I want to set goals like, “I’ll finish recording this song by next week.” But that leads to a lot of frustration when my health gets in the way. So I have to consider my motivation for that goal. Some of it comes down to my ego, which isn’t helpful, but I also simply value creative expression.
A values worksheet.
Rather than rely on external markers of progress for my sense of worth, I’m trying to focus on engaging with my values, in whatever way I can. Maybe I write a lyric or hum a new melody. Maybe I revise an arrangement or simply think about how I want to record a guitar part. What matters is that, at the end of the day, I can say I lived according to my values. It’s not easy for me to immediately find satisfaction in that, but I’m working on it.
In any case, my health issues have suddenly become extremely relevant. Last week, TIME aptly summed up the situation.
If I can muster the energy, I might actually pitch my own piece about Covid and ME/CFS–partly because I’m in a unique position to comment on it, but mostly because I need the cash!
By the way, if you never caught the story about how all this began, or if you want more resources about it, my friend Will recently helped me add a Health page to my website. (The site has a few small design bugs that I haven’t yet had the cognitive stamina to fix, but all the important stuff is there!) Feel free to share!
’til next time,
PS If you’re still catching up on my overall health story, here are the Cliff Notes. If you want these updates to land in your inbox, just head to my profile page, scroll past the subscription levels, and click Follow (it’s free!). And if you know happen to anyone who might be interested in this stuff, for whatever reason, feel free to share!