How I Recover from a Long COVID "Crash"

Post-Exertional Malaise and the Language of Long COVID

Photo by Matthew Henry on Unsplash

On Friday’s podcast, Episode #27: Long COVID Life Update, I shared how post-exertional malaise feels in my body and how I recover from a set-back. I’ll expand on my approach today, and explain how I categorize my Long COVID symptoms on a health spectrum, from mild to horrific. Defining our health, and recognizing patterns within it, is remarkably challenging for Long COVID patients, for reasons I’ll explain. Nonetheless, it is key to my recovery plans (yes, “plans” plural).

POST-EXERTIONAL MALAISE

Post-exertional malaise, often abbreviated to PEM, is a debilitating set of symptoms I experience after exerting myself, and is a common presentation of Long COVID. It doesn’t take much to trigger PEM. Any physical, cognitive, or emotional undertaking can do it. At its most extreme, PEM leaves me tethered to bed for days on end, not only with flu-like malaise, but cardiovascular and cognitive dysfunction, as well. This experience is often called a Long COVID “crash.”

Fortunately, my PEM doesn’t occur as frequently as it used to, nor are the episodes as severe. This is a marker of my improvement, but more than anything it reflects the ways I am more effectively pacing my energy. I still get PEM, I am just better at avoiding it. I can’t always predict what level of exertion will trigger an episode, however, and that’s what makes living with Long COVID so challenging. As my health improves, I naturally try to do more, to push a little farther. It’s only when I crash that I learn my body’s limits.

LANGUAGE FOR LONG COVID IS A MEDICAL NECESSITY

I doubt a scientist coined the term ‘crash.’ It’s much more likely a patient did, probably one with the related illness myalgic encephalomyelitis. Since the beginning of the pandemic, lacking sufficient attention from the medical world, patients have built language around Long COVID in order to describe their symptoms and experience. Clinicians and scientists then adopt some of this language. The name Long COVID is itself attributed to a patient, and there is even debate over the most appropriate written form. A Twitter tutorial is the reason behind my recent change from writing LongCovid to Long COVID. This is not on a whim. The community of Long COVID advocates speaking on the issue have backgrounds in journalism, science research, and linguistics.

The importance of accurate language to describe disease states is foundational to medical training. In medical school, I learned symptom vocabulary. These included words for common sensations like myalgia (the muscle soreness you feel after a workout, or when you have the flu) and paresthesia (the pins-and-needles you feel when you’ve hit your funny bone). I also learned the names of sensations I hadn’t personally experienced, like angina. By memorizing its definition in class and listening to its description from patients, I learned what angina meant. As importantly, I learned what that sensation foretold and what I should do in response. Is this patient in danger? What does the patient need, and how urgently?

Like the connection between the words chest pain and EKG, establishing language around our ever-changing health status allows those of us with Long COVID to communicate not only how we feel, but what we need at any given time. Long COVID is a a dynamic disability, one whose presentation changes often. Many of us, once we’ve lived with the disease for some time, recognize that we cycle through phases of health. Sometimes we feel pretty good, other times poorly. How can we categorize those sensations further? How do we then respond to them?

CATEGORIZING THE PHASES OF YOUR HEALTH

Since medical terms to describe Long COVID are lacking - even the word ‘fatigue’ doesn’t seem to capture what we’re experiencing - Long COVID patients must create that language themselves. You can establish your own terms and phrases, and they don’t need to sound scientific to effectively represent your health. Someone I spoke with who experienced a fatiguing illness herself suggested the words ‘dip’ and ‘crash’ to describe low-energy or high-symptom states of distinct severity. Not every downturn in health is a crash, I recall her explaining. Responding to a dip might include a few extra glasses of water and cutting the day short. A crash might require IV hydration, medication, and days of bedrest. I think of it as the difference between anemia that will improve with iron supplements, and anemia that requires a blood transfusion.

How do you determine your level of metaphorical anemia? Well, as with many aspects of Long COVID, it helps to track patterns. This does not require expensive bio-tracking technology.

I simply pay attention to how I feel. If I feel unwell, I act accordingly. Rating and tracking my symptoms informs my choices. If the idea of starting this process sounds taxing, I suggest exploring the Visible app. Unlike traditional fitness trackers, which tend to encourage you to push yourself, Visible is specifically designed for Long COVID and is intended to help you anticipate and reduce post-exertional malaise. It tracks your answer to a simple question, “How do you feel today?” on a scale of 1-4. You can choose to rate and follow particular symptoms, too. I like it because it’s simple and effective. Visible provides a free symptom-tracking option, and offers a wearable armband designed to track your body’s signals of PEM.

EVALUATE YOUR SYMPTOMS LIKE A DOCTOR

Rating your general well-being is one thing, defining why or how you feel unwell is another. Visible can help you track what you’re feeling, but the process starts with you. Nothing can replace paying attention to your body. What symptoms are you experiencing when you sigh and say “I feel terrible”? If you don’t know where to start, try a quick body scan. Buddhist meditation teaches us to scan our body from head to toe, paying attention to the sensations arising in each place. That works well for many people and you can find many guided body-scan meditations online.

I use the organ-based approach to evaluating my health, the same technique I relied on as a physician to comprehensively evaluate patients. I still tend to move from head to toe, but each organ reminds me of a set of symptoms to review. If a symptom is present, I then describe the quality, severity, and associated factors: “What is happening? How severe is it? What makes it worse/better?” This is how most of your doctors organize their understanding of your symptoms and needs.

Health Assessment by Organ System

Neuro: brain/cognition, pain, dizziness, tremors

Pulmonary: ease of breathing, rate, depth, chest pain,

Cardiac: heart rate, chest pain

GI: abdominal pain, bloating, changes in stool or appetite

Pelvis: menstrual cycle, urinary changes,

Musculoskeletal: Aches, tension, stiffness, fatigue

Whatever process you use to assess your symptoms, consistency helps. Check-in with yourself during good times and rough. Remember, this process takes time and self-compassion is an absolute necessity. It goes against our instincts to pay attention to discomfort. It’s stressful and frightening. There were times in these past few years I could not adequately explain how horribly I felt. I could not make sense of my symptoms and I could not describe what was going on. All I could do was say “my body’s malfunctioning.” That pretty accurately summed it up, but I couldn’t help but worry I was headed toward a total collapse.

MY LONG COVID RECOVERY PLANS

I haven’t thought about that moment in a while. It makes me a bit emotional to remember how confused I felt, how powerless. Luckily, “malfunction” hasn’t applied for some time. I use other terms now, and even though they sound pretty causal, they are well-defined.

“I overdid it” - Warning Signs of Post-Exertional Malaise

• Scenario

  • I have been feeling well recently so I’ve have been more active than usual. I notice I may have pushed the boundaries of my energy envelope and if I don’t reduce my activity, I will experience post-exertional malaise

• Symptoms:

  • cognitive-shortening attention span, visual impairments; fatigue-I tire more easily; sleep is less refreshing and I notice increasing “hangover” feeling in the mornings; generalized aches

• Response:

  • Minimize scheduled activities and delegate domestic work for upcoming days-week

  • Schedule rest and re-establish healthy habits: take medications on time, nourish, hydrate, protect sleep schedule

“I’m struggling” - Post-Exertional Malaise

• Scenario

  • Extended “warning signs” period that hasn’t responded to my typical treatments, or the aftermath of a high level of exertion. This typically occurs after I travel for out-of-town medical care, or after a social engagement.

• Symptoms: As above, plus

  • cognitive - word-finding difficulty, headache/migraine, worsened vision; fatigue requiring bed rest for full day; increasingly unrefreshing sleep with fitful, disruptive dreams; cardiac- orthostatic intolerance, lower extremity edema, shortness of breath with exertion and reduced exercise tolerance

• Response: As above, plus

  • Full bed rest for at least a day; aggressive hydration; compression stockings; pain and sleep medication as needed

“I’m crashing” - Long COVID crash

• Scenario

  • Typically the result of significant stressor, for example a family emergency or new illness like a viral respiratory infection, severe allergies/MCAS, strep-throat

• Symptoms: As above, plus

  • Migraine, facial pain, myalgia, fever, flu-like malaise, sensitivity to light and sound, nausea

• Response: As above, plus

  • Absolute rest in a dark quiet room

ESTABLISHING LANGUAGE CAN EASE DISTRESS

Once I identified the patterns of Long COVID, I was better able to explain my symptom progression to doctors. But more frequently, I use this short-hand with my husband, so I don’t need to exert cognitive labor explaining and re-explaining the details of my condition to him. We’re quickly on the same page, as are my children, and nobody seems to take it personally when I’m in lock-down mode. We’ve been here before, we’ve put a name to it, we know how to respond, and we trust the tough period will pass. The grief that comes with this kind of household life is a topic for another day, but is certainly present.

I use similar short-hand for social situations, like coffee with a friend or a BBQ with the neighbors. My family and friends are familiar with me saying I’m “reaching my limit” or “shutting down,” after which I typically leave to rest. No extensive explanations, no apologies, just honest quick communication.

I’ve spent more time here defining my Long COVID crash than I have laying out my treatment plan. That’s because defining our condition is the hardest part and the most vital. Defining how this disease presents, and when it worsens, will help reveal ways you can respond to it.

As we recover from Long COVID, we do not have enough guidance from health professionals. We’re forced to learn as we go. I invite you to make the process as personalized and sustainable as you can. Empower yourself to name your symptoms and your phases of health. I’ve shared the terms I use, but yours can be different. Name your headache Tina if you want. Refer to post-exertional malaise as Fred. Next, describe your symptoms well. Who is Fred and when does he show up? Then, you can explore ways to make him go away. While it’s not always easy, the effort required to engage in this process is worthwhile, because for the time being, some version of Fred will show up repeatedly. I sincerely believe, however, that post-exertional malaise can disrupt our lives less frequently.

How does this idea sit with you? What’s your Long COVID language? What symptoms flare in a crash, and what are some aspects of your recovery plan(s)?