This is not over

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.