Hi!
If you recently got a message about a post that no longer exists, it’s mainly because of Patreon’s not so great user interface (especially on mobile). I hit the publish button much too early.
But since we’re all here, I may as well give you a update on how I’m doing. I get migraines basically every day. I’ve recently gotten some new tools that help manage those migraines a little bit, but I still spend a fairly sizable chunk of my time dealing with head pain.
Over the past few months, the migraines kept happening later and later at night too. That gradually pushed my sleep schedule later and later. At this point, I fall asleep around 7:00 or 8:00 a.m., and I get up around 4:00 p.m. I’m working with my sleep doctor to try and get back to a more reasonable schedule, but there’s not much I can do about it when migraines hit me right before bedtime.
I’ve had some pretty bad gut issues over the past few months too. I think we’re finally making some headway on that, but it’s been pretty difficult.
A few months ago, I got diagnosed with sensory neuropathy. My CFS doctor has been testing her patients for it regularly because it seems to come up often, even for people like me who don’t experience any of the main symptoms yet. It may actually be part of what’s causing my gut issues. In any case, I have to get a skin biopsy from Johns Hopkins to get the diagnosis confirmed, and the soonest available appointment is in June. So it will be a while before I can do anything about that particular diagnosis.
A few weeks ago, my hypersomnia (daytime drowsiness) abruptly became far more severe. It’s a totally separate condition that predates my CFS, but it had been mostly under control for the past few years. Recently, it lurched up from the darkness and pulled me under. It’s mostly manageable with stimulants (ADHD meds), but without treatment, I’m basically too sleepy to move or even open my eyes. An unusually high number of people with CFS have sleep disorders, but no one knows why.
This is all a big part of why ME/CFS is so difficult to explain succinctly. The range of symptoms is so broad, and different individuals experience it in very different ways. It causes secondary problems, and those secondary problems cause tertiary problems. It all stacks up and consumes whatever energy CFS hasn’t already taken away.
In my occasional lucid, less-painful moments, I’m still working on new music. With your help, I was recently able to buy an Arturia controller that I’ve wanted for a while, and I’m getting some older gear fixed up. I wish I was able to move a bit more quickly and consistently–my ideas greatly exceed my ability to execute them–but I’m doing what I can with what I’ve got.
I am, as always, grateful and humbled by your support.
-R.
