Navigating Long COVID

Life with long COVID is hell. If you don’t already have firsthand knowledge of what that means, I sincerely hope you never do.

I’m from the original crop of long haulers, first infected in December 2019 before anyone ever heard of coronavirus and again in January 2021. Life has been persistently nightmarish since that second infection, but I’ve found ways of getting through my days, making them more livable. I hope some fellow long haulers can find relief from what I’ve learned.

This is the first in a series of articles about my long COVID (LC) journey. It’s the hardest thing I’ve ever done, and I’m not convinced I’ll ever recover. I hope I do. I hope we all do. For now, until there’s a cure or other remedy, here are the things that help me feel a little better. I’ll expound on each bullet point in future pieces, but I wanted to keep this one as brief as possible. I get exhausted quickly, and I know many others do as well.

• Managing Emotions: One of the earliest and most important lessons I learned was to stop letting my emotions get the upper hand. Anger hurts. Anxiety hurts. I learned early in LC to stop letting myself get upset. Conversely, gratitude and joy are like magic elixirs. I’m constantly on the prowl for things that bring me joy, and I pause several times throughout my day to experience and/or express gratitude.
• Meditation: In the simplest terms, I would have lost my mind a thousand times if I hadn’t learned to meditate. It’s one of the few ways I can interrupt pain. It’s the only way I can forget, briefly, the monster that lives in my cells.
• Breathing: How am I supposed to observe my breathing without changing it? Is that even possible? I don’t know those answers, but I do know that observing my breath revealed that I was squeezing the life out of myself and had been since I was a little girl. And, boy, did I botch it when I tried to fix it! Observe, don’t fix. Learn to relax first. Then learn to cede control of your body. Then your breathing will fix itself.
• Relaxation: I do body scans every morning to “get the bed out” of my spine. I usually require at least one more midday and often another at bedtime. I start at my toes, be sure to include the soles of my feet, and go all the way to my scalp. When you’ve done enough of these, you eventually start finding micro-tensions and muscles you didn’t know existed. Deep relaxation makes a huge difference in symptoms for me.
• Movement: Yoga and dance are my go-to movement routines. I do yoga every morning, outdoors in the sun if possible, and throughout the day whenever I start feeling myself get stiff. I dance when the music grabs me. I still have trouble walking, but I can always dance, at least for a little while. Find something you can do that gets you moving — not too much, not too fast, not too far, not too anything. Just enough, or maybe just south of enough.
• Self-Care: Nothing comes before my health. If I’m not up for a task, I’m not doing it. Period. If I need to rest, I rest. I spend a lot of time resting, meditating, stretching, showering and bathing. Strong, non-negotiable boundaries are necessary with this disease.
• Pacing: This was hard to learn, and I still fail miserably on a regular basis. Crashes can come on so quickly that anticipating them isn’t always possible. Post-exertional malaise is one of the most common symptoms with LC, and it’s also one of the most difficult to manage. I sometimes stop what I’m doing and literally pace the floor in order to assess whether it’s time to rest. (Side note: I love walking meditations.)
• Diet: I have a long list of foods to avoid — meats, legumes, wheat, most animal products, packaged foods, artificial flavors and colors. I basically graze all day versus eating meals, since I can’t eat much at once. It’s my understanding that bothersome foods vary from one individual to another, so your list may be different than mine, but I strongly encourage you to figure out if foods are an issue. I also munch on ice chips before and after eating. I find it helps prevent bloating.
• Hydration: I can’t drink much at once either, so I’m always sipping something. I start each day with coconut water, usually mixed with a little orange juice. My goal is a half-gallon of water per day, but I rarely exceed three pints.
• Vagus Nerve Stimulation: There are many ways to stimulate the vagus nerve: a five- to ten-second Valsalva maneuver; massaging the outer ear and behind it; meditation; yoga; cold showers (I don’t personally recommend).
• Magnet Therapy: I discovered the magic of magnets accidentally. I use a Pax vaporizer, which has a magnetic lid adjacent to a tiny oven. I discovered that whenever I held the device next to one of my more troublesome areas, the pain seemed to get better. So I started experimenting. Then I discovered magnetic therapy is a legitimate form of pain management. I haven’t seen a professional (wish I could!), but I gladly attest to the efficacy.
• Serotonin: Joy. Laughter. Sunshine. Gratitude. I’ve read studies that suggest low serotonin levels in the brain could contribute to the “brain fog” of LC. I’ve read other studies that blame an over-abundance of serotonin in the gut for our gut issues. I don’t know if either is correct, but I know I feel better if I’m actively boosting it.

The next items on my list might sound bizarre. They all sounded weird to me when I first discovered them, but they all help enough that I practice them regularly.

• Music: I can feel music in my body. I learned this trick from Neurodharma: New Science, Ancient Wisdom, and Seven Practices of the Highest Happiness by Rick Hanson. It has proven invaluable in symptom mitigation.
• Voice Exercises: Do you sing? Sing! Sing more. I can’t sing. I’ve had a raspy, crackly voice most of my life — until I figured out that doing voice exercises helps my symptoms. They also helped my raspy voice. Imagine. But voice exercises for long COVID symptoms? Vocal exercises stimulate the vagus nerve, which has a positive effect on my symptoms. I also chant regularly.
• Body Awareness: “What do you want from me?” I blurted out one day when pain was the only thing I could sense. I thought I was talking to COVID, but my body answered. I started having aversions to foods I’ve always loved. Turns out, those were the foods that amplify my pain. Our bodies are much smarter than we are, I believe.
• Immune Support (?): This is perhaps the weirdest thing I discovered, and I can’t explain how I discovered it other than intuition sparked by reading about T-cells, cytokine storms, and a host of other topics I’ve long since lost to long-COVID brain dysfunction. What about the thymus? I wondered one day. Off I went reading about the thymus and its relation to the immune system. What I learned will be the subject of my next article, but the only direct intervention I found for promoting thymus health was a practice known as “tapping.” Thymus tapping is now a part of my daily routine.

Phew! I’m exhausted. Are you? Have you found relief in ways I didn’t mention? If so, please let me (and other readers) know in comments. Some of what I listed, I learned by reading about long COVID. Other things, I simply discovered either intuitively, accidentally, or by trial and error.