The Long Road Home

It’s been nearly six months since my son brought COVID into our home. These days, if you were to catch a brief glimpse of me on a video call or out with my son, you would never know my wounds from COVID still “ache.” Spend a bit more time with me, though, and you will quickly see that this former Paralympic athlete and triple-Board Certified physician has been utterly humbled and debilitated by the microscopic pathogen.

Unfortunately, after my bout with COVID, which I described in my last post, I became a statistic: one of the (likely) millions of Americans suffering from “Post-Acute Sequelae of COVID”, or as it is more commonly known, long-haul COVID. I have worked 3.5 days in the last 6 months. I can sleep for 10 hours and still wake up exhausted. Everyday activities I used to take for granted now require planning and “pacing” to ensure I do not exceed my “energy budget.” Taking a shower now requires sitting on a shower bench plus time for a 20-30 minute recovery period. Despite sitting while showering, my heart rate still routinely rises into the 110s to 120. While some people experience symptoms like this due to de-conditioning, in my case it is most likely related to dysautonomia (aka dysfunction of the parts on my nervous system responsible for automatic body functions, like the changes that are supposed to happen when you stand up to keep blood flowing to your brain).

One of the most challenging symptoms that many people with Long Covid with long lasting fatigue experience is what’s called “post-exertional malaise” or PEM. Basically, it’s an increase in symptoms due to exertion. It can occur after a single episode of over-doing it or as the result of just slightly pushing beyond one’s energy budget for many days in a row. The trickiest aspects of PEM are that it is often delayed, it is out of proportion with level of exertion, and by the time one experiences an increase in symptoms, you are likely well beyond the point of triggering PEM. Additionally, it’s not just physical exertion that can cause PEM- emotional and cognitive exertion can also trigger symptoms.

Recently, we traveled out of state to visit family. I utilized a wheelchair through the airports, spent most of the trip resting, and missed out on the majority of the family activities. However, my best efforts at “pacing” were floridly insufficient. The day after returning home, I awoke to find I could barely even get out of bed. This episode lasted for three days despite doing the bare minimum amount of activity. Not exactly ideal for the mom of a busy preschooler.

There was a time when I swam 55,000 meter per week. Not that long ago, I would regularly work out with a trainer for an hour per session. These days, I’m excited when I have enough energy to actually park in our garage (which has a full flight of stairs up to the house) or can walk my son the two blocks to preschool. Recently, thanks to the purchase of a wheelchair with elevated leg rests, I was able to join my husband and son on a weekend outing. The subsequent severe headache, nausea, shortness of breath and widespread body aches that followed were worth it! Every social event requires weighing the importance of the event against the amount of time upright, exposure to heat, amount of sensory stimuli and whether I have any “can’t miss” activities over the next few days.

As I mentioned at the beginning of the post, one of the hardest aspects of my current illness is its invisibility. With a few exceptions, my labs are “normal.” If you take my heart rate and blood pressure when I’m sitting quietly, the numbers are optimal (though it’s another story if you do orthostatic vital signs, or in layman terms, compare my heart rate and blood pressure while lying down to what happens when I stand upright). For short periods of time, I seem completely normal (especially if you don’t see me after the exertion). And yet, most days, reading a novel might give me a migraine or require an afternoon nap to avoid a prolonged crash. My heart breaks for the number of times I’ve had to tell my son that mommy doesn’t feel well enough to play with him. Worst of all, modern medicine has little to offer at this point because knowledge regarding Long Covid is still in its infancy. So for now I wait, research, try to pace and hope that experts who are building upon what has been learned from other post-viral syndromes will ultimately discover a path to recovery.