Context

Fatigue is my primary long COVID symptom. COVID infected me seven months ago. I don’t take any medication or supplements. 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.

I am not fully recovered, so I might very well be wrong.

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?

Recently I worked myself up to a 2.5 mile walk every morning. 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

I also call this stage “Vacation Mode” because I generally feel good, but I’m not doing very much.

The Next Stage

I don’t know what the next phases is because I’m not there yet. I hope it is getting integrated back into work, but I have a ways to go.

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.