I’ve decided to think dramatically about my obstacles in my first attempt to blog about my new condition with a sense of humor. Honestly, there hasn’t been much to laugh at. For example, I got distracted playing Chess on Duolingo the other day and gave myself Post Exertional Malaise (PEM). First, I noticed the headache, then I noticed that I was panting, and then I realized that I was dizzy. It was just chess! But I lost track of time, got caught up in it, and overtaxed my brain. Stamina spent. Crash incoming. An entire day wasted. It’s hard to laugh about things like that. I had big plans to implement. Instead, I watched TV—until that gave me a headache, too.
Every day I have lists, but I rarely make it to the end of them because of the drain cognitive, physical, and even emotional events have on my stamina levels. Chronic fatigue is complicated.
That’s when it occurred to me. If ADHD is heading to the grocery store and ending up in Vegas, depression is a dreary, overcast day with frequent downpours, and Tourettes is a random mugging on my way to the park, then Post Viral Dysautonomia is like climbing up a hill, then getting run over by a truck.
Since I don’t live in a Japanese light novel, that truck isn’t sending me off to an isekai adventure. It’s more likely that truck puts me in bed. When I began my new neuro PT exercises last week, I did too many of them and ended up in bed for three days. This illness requires careful planning and tactical thinking, contrary to my ADHD impulsiveness.
For example, I have problems now with dangerously low oxygen saturation levels thanks to COVID–19. It occurred to me that I hadn’t been playing any woodwind instruments in a long while, so maybe I could add that to my daily routine to increase my lung capacity again. Perhaps that would help.
So I practiced for a timed 15 minutes for two instruments, and found that I could only sometimes make the full 30 minute session without getting dizzy and light-headed. Yesterday, I shortened the session to 10 minutes per instrument. It’s a far cry from playing for hours like I used to enjoy, but there are other things that I need to do daily, and if I can tolerate a 20 minute session, then that’s fantastic. I can build up from there. However, I will cap it at 30 minutes. My goal isn’t to play the shinobue and ocarina professionally. It’s just lung exercise and a bit of fun. Other things like freelance work, packing to move, and writing require vast energy reserves. I need to plan my time better. Using a timer is key, but being mindful of the calendar helps, too. Laughter is another tool that I am only now using again. It’s rusty, but I’m sure I can get it shiny again—assuming I can avoid getting hit by more trucks.
~Dˢ
