Covid, I mean. As in the pandemic that is still there, that people are trying to ignore and pretend it’s not that bad. Except that for those of us dealing with long covid, or post-covid, or covid-induced chronic fatigue, or post-viral chronic fatigue, call it what you will, it’s very much still there. It’s there every morning when we wake up and feel halfway back to normal, and then try to sit up or stand up or have a shower, and realise yet again we have to sit down for a few minutes to let the heart rate settle down. And I’m one of the lucky ones that can stand and walk and sit for hours; so many are still bed-ridden. Some are functioning despite all of this (Catherine Heymans, for example), some are not.
I’m doing better than I was, the brain fog has lifted somewhat, but I’m limited in how many hours I can work each day, how much I can do physically, how much energy I have emotionally. And I’m one of the lucky ones, with a workplace that’s understanding and a family that’s supportive. Even with that, it’s hard and frustrating.
There are some 220 post-covid symptoms, which come in various groupings and nuances. Common symptoms are brain fog, fatigue that comes seemingly from nowhere, a heart rate that bounces around, and the feeling that you can’t get enough breath. The BC long covid clinic (which requires a referral from your family doctor, should you be lucky enough to have one) concentrates on education, which is useful, but leaves you trying to figure out what your own individual type of post-covid is. If you’re lucky enough to have a supportive family doctor (which I do), they will try to work with you to figure this all out. If you’re unlucky enough to have one who doesn’t believe in dysautonomia or postural orthostatic tachycardia (POTS) as symptoms of long covid, you go to the long covid clinic and find supportive voices from all the others whose doctors don’t believe their symptoms are real.
But they are real. One way to diagnose POTS at home is the NASA lean test. Basically, the theory behind the test is that when you go from lying to standing, your blood pressure normally drops slightly as gravity acts on the blood, and your heart rate goes up a little to compensate. If you’re healthy, everything normalizes rapidly so you can stand and walk without issues. The NASA lean test tests how quickly that happens, and what your body goes through when you change elevation from lying to standing. If you have POTS, when you go from lying to standing your heart rate goes up a lot, and either your blood pressure drops a lot, or your blood pressure goes up a lot. Both variations are known, both indicate POTS. A word of warning if you want to try this test and you suspect you may have some blood pressure or heart rate issues: Make sure you don’t have anything major planned that day. Doing the test gave me a headache and wiped me out for the rest of the day. And of course, just knowing that you have some POTS-style issue does not mean there’s a treatment for it, other than the ubiquitous advice about pacing.
Pacing is everything in the world of long covid, along with not catching covid again. More on what that means next time, writing this has depleted my energy levels for the day.
