My wife looked at these web pages and commented, “You don’t sound sick.” Am I?
If you saw me on my morning walk or ran into me at my favorite deli, you would have no idea I live with long COVID. To do those activities I carefully pace myself and rest throughout the rest of the day. That walk or deli outing is one of my Big Excitements for the day. When going to deli to eat a sandwich by yourself is a Big Excitement, you know you are sick.
But what about these web pages? Don’t I have brain fog? I get brain fog when I am tired. It’s similar to when I’m hungry or work on a problem too long and my brain stops working. What’s different now is that I get tired very easily and I have to pace myself very carefully. So if I am pacing myself and having a good day, then I can do some writing. Writing exercises my brain and gives some meaning to this misery, which I think is very useful for my recovery. I have done that little by little over months to build up these pages on long COVID.
On days when I feel good, but don’t do much, I start to ask, “Am I really sick?” I gaslight myself. My temptation is to do too much, crash, and confirm that I really am sick. A healthier strategy is to do small experiments to try to find the boundary of my energy envelope from the inside rather than the outside.
So yes, despite being relatively well groomed and able to carry on a conversation, I am still living with long COVID. 1.7% of US adults have COVID symptoms that have lasted over 3 months and impact their daily activities “a lot,” so out of every 50 adults in the US about 1 has symptoms like mine. They might be walking around just like me or they might be at home in bed.