I’m complaining on Twitter about having a post-air-travel cold, so that made me think to post an update here.
The Chronic Fatigue Syndrome is, overall, pretty well managed. ‘m getting in regular light physical activity. I’m eating fairly well. I’m calibrating how much I can work, and I’m developing a more healthy (for lack of a better word) toward work.
It seems I can target around 15-20ish hours per week of work/business stuff without much risk of relapse. But part of avoiding that relapse is stopping work for the morning or the day, or even the week, when I can feel that I’m pushing myself to get through something. I take my naps when I need to. I stop and watch TV or read a book when that’s what I feel like. Per Jalan, I take a lunch break, and I spend an hour or two most weekday mornings in a coffee shop. There are certain kinds of work I’m permitted in the coffee shop, but otherwise it’s a gradual entry to the day and taking some time for self-care. This also helps keep me from going stir-crazy now that she’s working long hours. I’m prone to cabin fever.
15-20 hours doesn’t sound like a lot to me. It does help me realize that if I had any other career than the one I do, I’d be filing for Social Security disability. There’s no doubt or equivocation about that. There is no full-time occupation I could do. But I also, as I’ve talked about recently, have the good fortune to have the skills to bring in a decent income in those 15-20 hours (some weeks more like 10, some more like 25). It does mean I’m shedding any “donated” time. I can’t afford the opportunity cost to work on a project that may someday might we hope lead to funding. And that’s a good thing to realize. I’ve been behind on my commitments since the relapse at the beginning of August. I’m slowly catching up, but I’m being very careful about making new ones.
But on the upside, I took a work trip this week. I flew across the country to give a presentation at a conference. It’s the first time I’ve traveled for work since getting sick, and I used to go around the globe. It’s only my second air travel since CFS, and the other was for the Mayo Clinic. It wasn’t the best presentation I’ve given, but it wasn’t the worst, and I attended some other talks while I had the endurance. Now I’ve got a cold and I’ve napped around eight hours today, but totally worth it. For the rebound in self-concept, if nothing else.
All that said: One of the possibilities for my fatigue syndrome isn’t “classic” CFS, whatever that would be, but a disorder in mitochondrial metabolism. The test for this is usually a muscle biopsy, which is typically taken from the bicep. I haven’t done it yet because I was on anti-platelet meds through this July after the arterial stent last year. No responsible doctor would take the risk of doing that biopsy unless it addressed something acutely life-threatening. But I’ve scheduled an appointment with my internist for this week to talk about setting up the consult at the Muscular Dystrophy Association clinic at the local hospital to see how we’d go about it. So we might learn something new.
Part of the timing of this, even though the CFS is “managed,” is because I’ve also realized I need to think about scheduling heart surgery to correct a congenital defect. The defect was found in the Summer of Diagnostics last year. It’s not causing any problems yet, but will eventually if un-addressed. So I might as well get it done while I’m in as good shape as I am, and I’m forecasting to Jalan’s next significant vacation availability to help me recuperate.
And, of course, no biopsy again if I were to do the heart surgery first.
My mood about all of this is good. There’s probably not much that could be done about a mitochondrial disorder, but it could affect the management strategies to have a more precise diagnosis. That, and I’d (finally!) know which specialists to be working with.
There’s a lot ahead of me, but there’s also a lot behind me, and I’m in good spirits. Except for the damned cold, but that’s the least of things. It feels weird in some ways to be upbeat about heart surgery, but I’ll take “upbeat” over “depressed” any day of the week.