These are the stages of long COVID recovery that I have observed in myself.
Context
Fatigue is my primary long COVID symptom. COVID infected me a little over a year ago. I don’t take any medication. Fortunately my job offers medical leave and my spouse understands chronic illness and is able to take most of the burden. We have no children living at home.
This is my experience, not what I read anywhere.
Crashing
Crashing is the first phase. On a regular basis I have to stop what I’m doing and take an unplanned rest, often for a day or more. I might feel good some days and terrible some days and it seems like I am able to basically do normal things in life, but my body is very behind in its energy production.
When I was trying to work half time I was in this state. I would work 2 hours, take nap. Then eat lunch and rest. Then I would work another 2 hours and take another nap. At night I was in bed an extra two hours. I would have to spend the entire weekend in bed in order to be able to start the week again. I couldn’t do any other activities at all.
I thought I would build stamina, but I did not. Instead I just got more and more tired. Once again I learned that pushing doesn’t help.
I have heard other people living with long COVID describe this stage as their daily reality.
Crash Recovery
When I recognize I’m crashing and decide it has to stop, I enter crash recovery.
In this phase I do absolutely as little as possible. I still take a shower every day and get dressed and attend my weekly counseling appointment, but I shut off everything else. I don’t pull in the empty trash cans from the street. I don’t go to lunch with anybody. I don’t attend worship. I don’t load or unload the dishwasher. I focus on spending as little energy as possible.
A heart rate monitor helps me identify when I am exerting myself so I can rest as much as possible.
I avoid as much mental and emotional exertion as possible. If the radio plays a stressful story, I turn it off. I don’t spend energy researching long COVID treatments.
I try to find relaxing, sedentary activities. Watching people fish on YouTube requires almost no mental exertion. Old shows like Twin Peaks are a restful distraction. However, I carefully monitor my video and podcast consumption because they cause me some mental exertion. Videos in particular energize me a tiny bit, so I often just shut off everything and rest. This is a really good time to sit outside or meditate.
If I spend most of my time lying down I feel significantly worse. I try to spend most of my time sitting up or at least propped up. The sleep experts say not to rest in bed during the day, but that wasn’t always logistically possible for me.
Eventually I’ll get to the point I don’t feel tired, but I’m doing hardly anything. I might even feel pretty good. I can be sitting up in bed, doing almost nothing, but feel normal. However, if I spend the energy of that normal feeling, I risk crashing.
My sleep gets messed up during this phase. I’m resting so much that my body doesn’t know to sleep at night. I try to have a consistent sleep and wake time. I put myself to bed and basically just stay in bed until the wake time.
I stay in this stage until I know I won’t crash. For example, I was crashing every week, so I shut out everything for more than two weeks.
At the end of this phase, I have reached baseline. I know if I continue with the same level of exertion, I won’t crash.
Note that at baseline I still don’t feel that great, which was very deceptive. I still have a daily “blah” feeling, but the important thing is that I’m not crashing.
Exploring
With my baseline establishing, I get to explore my energy envelope.
I introduce activity very, very slowly. I might walk down two houses and back. If I can do that for three days in a row without feeling more tired, then I walk down three houses and back the next day. (Another, safer strategy is to do the activity once and wait three days to see if I crash.)
When I’m adding this movement, I’m looking for the following:
- Did it immediately make me feel like I was about to crash? If so then I clearly did too much. The activity should feel like nothing.
- Two or three days later did I have a setback?
- If I do it for several days in a row, does it cause me to decline?
Once while in this phase I worked myself up to a 2.5 mile walk every morning, which was my daily walk before COVID. After five walks, I looked back at my symptom tracking and realized that I had been feeling bad for several days, starting two days after the first 2.5 mile walk. So I scaled my walk way back. I have to be very careful to not set a goal like “walk 2.5 miles.” It feels good to accomplish the goal, but PEM means my body does not build up stamina. Just because I walked 2.5 miles five days in a row does not mean my body can tolerate that long term. I suspect that’s why graded exercise therapy is so harmful.
Once I get my body moving again, I feel a euphoria. I have to be very careful to just enjoy the euphoria, but stick with the plan. Otherwise I over exert myself and backslide.
During this phase, if I keep my heart rate at 60% of max heart rate, I feel terrible. I feel much better if I let the engine rev a little bit with an activity like walking on level ground (not hills and definitely not running). Read more
During this stage, I feel pretty good, but my activities are severely restricted. I found it very tempting to convince myself I was better, but I was only better because my activities were so restricted.
PEM is Gone?
One day in late June, only about a week after my last crash, the dog really needed a haircut. We had bad experiences with groomers, so I decided to give it a go. I thought there was a significant chance I would crash, but the dog was really uncomfortable in the summer heat, so I was committed to doing a sloppy trim.
I worked in 15 minute chunks, resting between. Normally doing something like this, especially with my head moving up and down, would cause my head to feel very wonky and I’ve had to stop, but I felt fine.
Since that day I have been testing my limits and so far I haven’t found any activities that make me crash. It’s like a switch flipped and I am suddenly dramatically better. I am still cautious and I’m not fully recovered, but finally I feel like I can do normal daily activities and not feel tired all the time.
This stage has come with a significant amount of anxiety. When I embark on activities that used to send me to bed for days or longer, my anxiety flares. I have a significant, and probably reasonable, fear that I’ll be sent all the way back to the crashing phase. As with all the stages, counseling helps a lot.
The real test was when I went back to work part-time.
Adjusting to the World
Eventually I was pretty convinced that PEM was gone or my energy envelope was very big. I am still cautious, but I’ve had a lot of adjustment to do back into life. When you are sick a year, the world looks different on the other side.
Pleasure
During each of the phases, I focus on the 4 Ps,
Prioritize, Plan, Pace, and Pleasure.
Pleasure in particular is easy to ignore.
It takes creativity, but I can find things I enjoy, even when I am exerting as little energy as possible.