Fatigue Actually
Fatigue can manifest in a variety of different ways in chronic illness. What is it, really? Where does it come from? And most importantly, what helps?
Fatigue is like salt; it’s that fundamental. We know its distinct flavor well, but it’s impossible to explain in words.
Fatigue is usually discussed with regard to a specific cause or condition. Each ailment has its own unique lexicon. For instance: in epilepsy, fatigue is “… extreme and persistent tiredness, weakness or exhaustion that could be mental, physical or both.” In Parkinson’s, fatigue is “… an important and frequent non-motor symptom. It is difficult to describe, there are no biological markers, being always a subjective definition…” In fibromyalgia: “… profound and overwhelming, more severe, constant, and unpredictable than normal tiredness, not relieved by resting or sleep, not proportional to effort exerted, and disruptive in terms of motivation, activities, and cognition.”
All of these differ from the Merriam-Webster definition—that fatigue is a “weariness or exhaustion from labor, exertion, or stress.” In medicine, fatigue is a weariness out of proportion from labor, exertion, or stress.
A 2021 article in the journal Brain, Behavior, & Immunity Health approached a shared definition across illnesses. To sum up their review: fatigue is a complex, multidimensional symptom (physical, mental, cognitive, emotional, and/or motivational) associated with poor quality of life.
What’s clear from my tiny bit of research is that fatigue is not just tiredness. It’s not a mere matter of degree. Fatigue affects multiple parts of us, impacting our entire lives.
In some cases, fatigue is fixable. If you have anemia, you just need some iron. Screening for acute issues is step one. But what if fatigue is due to an underlying chronic disorder, or becomes itself chronic? As recently as last year, a review in BMC Medicine reported that while many studies have aimed to establish biomarkers for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the disease whose primary symptom is unexplained fatigue, these proposed diagnostics remain unvalidated. They all differ in efficiency, quality, and translatability. So for now, fatigue is measured subjectively. It’s something only the patient can gauge, and that makes it hard for science to help.
From cancer and long COVID to fibromyalgia and MS, exercise—that thing that gets hardest to do when fatigued—is touted as one of the symptom’s only effective treatments. This makes sense to me, assuming a patient doesn’t push things too far. When my heart failure was very symptomatic and I had a lower ejection fraction, it was extremely hard to move. “Exercise!,” said my doctors. My low blood pressure and dipping heart rate made it tough to complete 20 minutes on an exercise bike at cardiac rehab. But I did. I walked one block, then two blocks, around town. Soon, a mile on a wooded trail. My husband made me keep trying, even on days when I really didn’t want to get out of bed. The progress was not linear, and a few times I definitely set myself back by willfully doing too much. Today, I still can’t reliably hike five miles. I can’t reliably do much. But there are also days when I competently hike seven miles.
Week by week, I get closer to averaging 10k daily steps. It takes time and patience for this kind of slow progress to reveal itself as a trend. The wins are very small and quiet. But wins do happen. I tell myself that if all I do on a given day is prevent myself from slipping in the wrong direction, that’s enough.
Exercise seems to help battle physical fatigue. My second most important battle is the hopelessness that stems from fatigue. Whether it’s physical, mental, emotional, or motivational, fatigue makes me want to throw up my hands. It’s easy to think that since I rarely feel optimal, I should just give up and cave to momentary pleasures like eating too many cookies or having a glass of wine (note: alcohol and beta blockers are not a match made in heaven…) Obviously, these things don’t help much. Maybe for a few seconds they do, while they’re in my mouth. Then hours later, through worsening brain fog, I’m asking myself what I was thinking.
In the absence of a cure, my biggest tool for managing fatigue from any cause (heart failure, PTSD, epilepsy/seizures, migraine, burnout, and pharmaceutical side effects) is meditation.
I know. Ughhhh. Another plug for mindfulness meditation.
Like Dan Harris in 10% Happier, I’m not a natural meditator. Before my SCA, I hated to be calm or still for any length of time. Even now, I hate to admit to myself, let alone you, that meditation is working.
Here’s how it goes for me, though: If I stop and sit quietly with myself for a moment before reaching for that next cookie, I can suddenly see past the next few seconds and understand what my body really needs. Instead of judging myself, I give attention to my body’s demands, committing 100% to fulfilling them. Turns out it’s often not sugar my body is asking for, when I really stop and listen. Without coercion, mindfulness helps me naturally pivot towards caring for myself—taking a bath, addressing a difficult emotion, getting some fresh air, or drinking water.
Meditation doesn’t cure fatigue, but it puts that symptom into perspective and keeps me from making matters worse. I’ve been meditating once a day for about 10 minutes. I still feel fatigued and down a lot of the time. The difference is that this fact bothers me a little bit less now than when I hadn’t yet established consistency in my meditation practice.
Through mindfulness, I’ve noticed something important about the excessivenesss of fatigue. “But I’m supposed to be able to do this!,” I hear myself think after getting “stuck” in the yard midway through picking up dog poop. [“Stuck” is my word for when I get so fatigued, I just involuntarily stop what I’m doing before noticing it—it then takes a tremendous amount of energy to restart or even to bail and go lie down to rest. So much easier to just fall down right here on this gross winter mud-lawn in my wool coat, mmmm…..]
Lately, when I get stuck, a more mindful voice on my shoulder pipes up: “Actually, you walked a few miles earlier and socialized with friends. You’re coming off a week where you painted an entire room of the house on top of your normal day-to-day activities. Oh, and that glass of wine you opted to have at lunch with friends? This is what that feels like sloshing around in there with metoprolol. Again.”
The mindful voice is the voice of reason and reality. Meditation, to me, means simply taking a break from fighting that reality.
I am new to noticing how hard I fight reality. Previously, I just knew that a lot of things were unacceptable, and I assumed it was my job to right them. But there’s something about sitting alone with yourself, watching your own thoughts arise one by one, that makes it hard to ignore the relentless tirade against existence they really are. Thought after thought—that isn’t right, I’m not enough, something doesn’t feel good, should, shouldn’t, this must change. I’m typing these words, thinking: well shit, no wonder I’m fatigued all the time. Setting myself up as a Reality Warrior is exhausting.
Luckily, there’s another way to be. Mindfully eating. Mindfully moving. Mindfully letting go of my expectations for how my health should be, for how I should feel, for what I should be able to accomplish today with this particular body and mind. Noticing my fatigue, accepting it, and managing it instead of battling or denying it. Sometimes, for a few seconds at a time, I stop comparing myself to others or to my former self. And into those brief moments, the antidote to fatigue flows stronger. While it’s not a cure for all that ails me, it is a type of restoration.