Working Within Long COVID Limits

Persistent fatigue is one of the hallmark characteristics of long COVID. So much so, in fact, that it is one of only three symptoms specifically mentioned in the World Health Organization’s clinical definition of long COVID. For those struggling with long COVID, the simple word “fatigue” doesn’t come close to accurately describing this post-COVID experience.

Debilitating. Disabling. Life-altering. These descriptions feel more accurate.

Those who have had long COVID describe the night-and-day transformation of living with pervasive fatigue. Their pre-COVID lives consisted of the activities most people take for granted. Maybe that’s attending college or going to work. It could be caring for the kids, getting them ready for school, or driving them to afterschool activities. Maybe it’s getting ready for that vacation they had been saving all year for.

Post-COVID, however, even getting out of bed may be impossible, much less engaging in normal, day-to-day activities like shopping, cooking, reading, and showering. An accomplishment might just be walking to the mailbox.

As one father described his post-COVID fatigue, “Every muscle in my body feels weak. It’s a weariness I feel from the top of my head to the bottom of my feet. It’s an exhaustion so all-consuming that I just have to lay down. I can’t do anything I used to do, and I hate it.”

Understandably, those with long COVID often wonder how long they’ll have to live like this. The common question: “When will I get my life back?”

The unfortunate answer is that we just don’t know. Researchers have yet to determine how long COVID will progress or what treatments will definitively improve its symptoms. That’s not to say progress isn’t being made, but it may mean that, for right now, fatigue is the new normal for those living with long COVID.

Even if fatigue may now be a constant companion, it doesn’t mean fatigue has to dominate how we live. We can still find meaning and fulfillment. We can learn new ways to cope with the fatigue in a way that promotes happiness and hope.

With this goal in mind, it’s important to understand the types of fatigue characteristic of long COVID as well as strategies you can take right now to cope with fatigue.

Fatigue vs. Post-Exertional Malaise

You would be forgiven for believing that fatigue was just that: fatigue. However, the profound weariness experienced by those suffering from post-viral syndromes like long COVID actually takes one of two forms.

Post-viral fatigue is the feeling of extreme exhaustion occurring even in the absence of tiring or difficult activities. It tends to persist regardless of how much sleep or rest a person gets. For those experiencing post-viral fatigue, it manifests as such a profound exhaustion that it impairs daily functioning and quality of life.

The second form of fatigue commonly seen in long COVID is post-exertional malaise (PEM), a condition that upwards of 75 percent of people living with long COVID are likely to continue experiencing after six months. At its most basic level, PEM is a delayed and disabling exhaustion disproportionate to the activity which triggered it. Even routine activities like showering, reading, or multi-tasking may cause PEM.

It’s important to realize that PEM worsens other long COVID symptoms and even negatively impacts cardiopulmonary functioning. PEM can occur following even minimal physical, emotional, social, or cognitive activities. The effects of PEM typically occur 12 to 48 hours following a triggering activity, and may last for days or weeks.

Fighting the Fatigue Leach

When living with pervasive exhaustion, fatigue can feel like a monstrous leach draining the life out of you. So how do we fight against it? How do we manage to live better despite the fatigue?

Step One: Prepare. Start by keeping a daily diary for at least two weeks. In this diary, log symptoms, symptom severity, and activities. When tracking activities, be sure to write down the duration and intensity of the activities.

After two weeks, review the diary. We’re looking for patterns between our activities, energy balance, and symptoms. Our diary also helps us identify potential physical, cognitive, sensory, and emotional triggers. More importantly, it allows us to brainstorm strategies to adjust our activities to better match our energy limits (e.g., engaging in activities when our energy is highest or setting a timer so we don’t overdo it).

Step Two: Prioritize. This step involves taking a critical look at what you have or want to do. On a scale from zero to ten, how important is this activity to you? Maybe you cringe when looking at your kitchen, and rate cleaning it a seven. Now consider whether you would rate this activity differently if you knew it would prevent you from doing something you really value (e.g., playing with your children). When we begin to critically evaluate our priorities, we may find that some activities can be delegated, deferred, or even removed from our “to do” list.

Step Three: Pacing. This may well be the most important step because people with long COVID often find pushing through their symptoms makes them feel much worse. Everything we do strains our bodies in some way and requires an output of physical, emotional, and cognitive energy. Prioritizing our health means mindfully choosing how we invest our energy.

One method of choosing mindfully is to imagine our energy as dollars. On a normal day, you have $100 to invest in each day’s activities. You cannot save money. If you run into the negative, you start with less money the following day. Keep in mind that some days we start with less than $100 (e.g., poor sleep, illness). When you consider today’s activities, are you investing wisely? Is there a return on your investment? If cleaning the kitchen costs $20, is that investment truly worth it to you if it prevents you from doing something you’d enjoy more? Seek out those creative solutions so that we invest more wisely.

Conclusion

Unfortunately, there is no magic wand that will wave away the fatigue typically experienced with long COVID. There is hope, though. Research is ongoing and doctors across the world are exploring both traditional (e.g., occupational therapy) and alternative (e.g., yoga, acupuncture) approaches to helping us live better with long COVID. In addition to taking the steps listed above, it’s important to consult with your physician so that both of you can partner together to fight fatigue and live more meaningfully.

Providers treating individuals with long COVID are encouraged to learn more about the experiences of those living with long COVID. Click here for results from a recent multinational study examining survey data on individuals’ experiences with long COVID.