Pacing strategies I have used to help recover from long COVID.
My goal of pacing is to avoid crashes from post-exertional malaise (PEM). PEM is when I do something that seems normal and then crash 1-2 days later. In my case, the trigger can be physical, mental, emotional, or social exertion.
Because the crash is delayed, I find it sometimes hard to correlate the activity to the crash.
What is a Crash?
I have experienced what I call “mini crashes,” for example I’m on a Zoom call for an hour and then immediately have to lie down and rest, but after resting, I feel refreshed.
I have also experienced bigger crashes where I have to spend a day or more in bed in order to recover.
And I have also lived through long-term crashs that lasted weeks.
I consider the mini-crashes a warning and the bigger crashes a definitive sign I have done too much.
The Basics
My goal is to avoid big crashes and minimize small crashes.
Within a single day, I can’t do too much. I have to remind myself that physical, mental, emotional, or social exertion all count toward my spending for the day.
Spreading out exertion helps a lot. For example, I couldn’t walk 4 blocks all at once, but I could walk 2 blocks in the morning and 2 blocks in the evening. However, there still seems to be a total daily limit.
Planned breaks helps me not over do it. For example, I eat breakfast, take a break, take a shower, take a break, get dressed, take a break, etc. During the breaks I listen for signs in my body that I’m over doing it. This is especially important with “new” activities that I haven’t done since I got sick.
Relaxing, deep breathing, and meditation/prayer are also important parts of pacing for me.
Establishing Baseline
In order to pace myself, I have to first establish a baseline of activity that I can tolerate without fatigue. In other words, I’m doing very little, but I’m not crashing.
I kept a log during this phase, which helped. I logged what I did, my symptoms, and whether or not I crashed.
When I did this, I discovered that every Monday I crashed. That was odd because I was on medical leave from work at the time, but it was a definite pattern.
Twice I have used the Visible Plus app with the arm band heart monitor for about a month to help me establish a baseline. (Once the baseline was established, I found the app too restrictive.) Read more
I was fortunate that my baseline was high enough that I could still complete daily activities like taking a shower.
Eventually I got to the point where I was not crashing, but I also wasn’t doing very much. It’s a strange feeling to be sitting up in bed, feel okay, but know that if I got up and did more I would feel bad.
Sitting in a chair outside in the sun is a enjoyable, low energy activity I discovered during this phase. I tried not to be in bed, but that was not always logistically possible.
I rested until I felt rested and then I rested a little bit more, until the lack of activity was really starting to drive me crazy.
This phase has a cost. My body got deconditioned and my sleep got disrupted because I spent so much time resting (not sleeping) during the day. As a result, I didn’t feel that great, but at least I wasn’t crashing. I tried to rest long enough that I knew I wouldn’t crash, but not too long.
Adding Back Activity
Once I established a baseline, I knew what I could do in a day without crashing, so I started very slowly adding back activity.
Before long COVID, every morning I walked 2.5 miles. So when I started back to activity, I walked around the block, which was the easiest walk I used to take. That was WAY too much. Instead I had to slowly walk down two houses (about 150 feet), turn around, and walk back.
Once I could do that walk 2-3 days without crashing, I would add one more house. So now I walk down 3 houses and turn back. Repeating the same activity 2-3 days is important because the crashes are often delayed. When I did these walks, they were not strenuous at all. In fact, I felt completely ridiculous. Eventually I got up to 4 blocks (2 blocks there, 2 blocks back). At that point I thought maybe I was being too careful, so I walked 8 blocks (4 there and 4 back) and crashed. The general guidance is to add 10% each time you up the activity.
Along the way I had setbacks where I would have to backtrack to a shorter distance, but eventually after weeks of this measured activity, I was able to get back to my 2.5 mile walks.
Long Term Pacing
After I could walk 2.5 miles every day for a couple of weeks, I thought I was ready to return to work, so I did. I tried working half days and it was way too much, but I kept at it, thinking I would build stamina. I did not build any stamina after four weeks. Instead I declined and had to go back on medical leave.
Then I started some physical therapy, which I thought I would have bandwidth for since I stopped working. However, that plus the Christmas holidays and some family situations started me crashing again and I had to go all the way back to re-estabilishing my baseline. Read more
This time I’m going to be more careful when I think I’m doing well.
Avoid Rushing
I have found it uses much less energy to give me a lot of extra time. So if I have an appointment in the morning, I’ll make sure I continue to take breaks between each step of getting ready. Most importantly, I give myself an extra 30 minutes so I can rest before I leave for the appointment and rest once I get there, but before I go inside.
Euphoria
Throughout my life, when I’m sick with the common cold, at the end I wake up feeling fantastic and I know its over.
With long COVID, I have had the same euphoria several times. If that happens and I act like I have no restrictions, then I crash.
My new strategy is to bask in the euphoria. Enjoy it for all it is worth. However, I still stick to my schedule of slowly adding back activity. I usually end up doing a little bit more because I feel so good, but not nearly as much as I want to.
What’s Under My Control?
After writing all that, I realized it sounds like I know what I’m doing and I have this all figured out and under control. I do not. I’m doing my best to care for myself, but it’s hard. I have had both of these experiences when trying something new:
- “That went great. Why did I wait so long to try that?”
- “That made me crash for two days, why didn’t I try a small bite?”
The whole situation is crazy making, but that’s a topic for another article.
I try to do things I think will help me improve. Sometimes I’m wrong. However, I try really, really hard to not go down the path of “this is my fault.”
Resources
The most comprehensive pacing tutorial I have found is here: https://cfsselfhelp.org/pacing-tutorial
The Bateman Horne Center has a short pacing video that I think summarizes the topic well. This second video has a lot more biology and at the end has some really great suggestions for pacing. They also produced a video lecture by a physical therapist and occupational therapist that has good information.
I originally learned this pacing strategy from the four-part video series on fatigue management hosted by LongCovid.org.
#MEAction wrote an easy-to-read PDF guide on pacing. There are additional pacing resources on their website here.
I also think this explanation of pacing by the user “essnhills” is very good: https://www.reddit.com/r/covidlonghaulers/comments/14zlgms/what_does_pacing_look_like_to_you/
The hard part is resting, but also moving your body as much as you can.
Todd Davenport did a lot of research into chronic fatigue syndrome, so he had a lot of experience when long COVID started. In this talk he is speaking at a physical therapy
conference: https://www.youtube.com/watch?v=XriPNG9000Q (55 minutes)