Pam's Pandemic Ponderings - Long COVID sucks! Hard.

Long COVID Self-Care Techniques

March 23, 2023 by Pam Boling Leave a Comment

Self-care is critical with long COVID. Since my second COVID infection in January 2021, I’ve had a persistent feeling that my body is trying to force me into a state of dormancy or semi-hibernation until it has finished recuperating. Most people who have long COVID and/or myalgic encephalomyelitis/chronic fatigue (ME/CFS) have an experiential understanding of post-exertional malaise (PEM). If you’ve never heard of it or don’t know what it is, the simplest tasks can and often do cause debilitating and protracted fatigue, usually with severe pain on board. I can’t imagine how people maintain jobs with this. I don’t think of this as “malaise.” It gives new meaning to “run over by a freight train.” I can usually recognize my limits and stop ahead of them, but the crash sometimes hits without warning. Other times — usually after feeling great for the first time in weeks — I ignorantly push through my limits because I cling tightly to the idea that I’m “able” again. Able to complete an insignificant task like chopping an onion, loading the dishwasher, or walking to the mailbox without having to rest on the sidewalk before returning home.

I can’t hibernate. Human bodies aren’t built for hibernation, and modern societies certainly don’t support such notions. I can and do prioritize my health, physical, mental, emotional, and spiritual health. This illness takes a lot of care and attention. Here are some practical ways I care for myself.

Meditation:

I’m fortunate that I started meditating early in my long COVID journey. In fact, I wasn’t yet aware I had long COVID when I started. I’m also quite fortunate that I learned it easily, but I think long COVID played a big role in my abbreviated learning curve. If I hadn’t been so desperate for relief, in the grips of despair, I probably wouldn’t have fallen into flow as quickly as I did. Most meditation methods use breathing as a point of focus, at least in the early stages of learning, which I learned by reading books and watching videos on YouTube. In retrospect, I would recommend a teacher, but with the caution to be as diligent in your search as you would be in seeking out a therapist or spiritual adviser. Trust is imperative! If you can’t swing a teacher for whatever reason (usually money), there are hundreds of books on the topic.

I’ve been practicing meditation daily since September 2020. It’s the first thing I do every morning and the last thing I do before I go to sleep at night. I now consider regular twice-daily meditation an essential part of living, as necessary as water and perhaps even a little more necessary than food with this COVID-plagued body. Please bear in mind that I’m conveying my own personal experience of this illness and my meditation experience, which both differ greatly from one person to another.

Breathing:

I’ve tried many different breathing techniques: belly breathing, box breathing, pranayama breathing. I learned most of these methods by watching YouTube videos. One of the earliest things I learned: I cannot observe my breathing without also changing it. I’ve practiced this hundreds of hours by now, and I’m not yet convinced that it’s possible to observe without changing it. Once I’ve attained a meditative (trance-like) state of mind, then I can hand the breathing back to the breathing master, my body. It’s not my job to direct my breathing, yet when I want to watch it, I jump into the control-freak role and take over. Relaxing is key. If you can relax your body and simply observe, without usurping control from your body, then your breathing can help you to deepen the relaxed state.

Relaxation:

Long COVID makes relaxing difficult. I started my journey with a long history of trauma, depression, and anxiety. I’ve been in and out of therapy since my early twenties, more than forty years. My body was (is) riddles with lasting imprints of my traumas that started in early childhood. Long COVID has shined a bright light in every hidden cranny of stored-up somatic memories of those many years of trauma: psychological, emotional, spiritual, and, yes, also physical. It’s almost as though my immune system, in survival mode since COVID, is attempting to cleanse my body of the scars and toxins it has accumulated. My son first suggested this to me, and I believe he’s onto something here. Evidence: I had severe menstrual cramps that felt exactly like what plagued my teen years. I have no uterus and no ovaries. Those “cramps” had to be scar tissue. There’s no other explanation.

Psychological and emotional traumas, rather than scarring, appear as micro-tensions in my musculature all over my body. I’ve had terrible posture since before my second birthday. In photographs from my youth, my head hangs low, shoulders squeezed forward, back hunched. I look in those photographs much like I feel: like I’m shrinking myself, trying to disappear from this world. Do you know how tense you are? I sure didn’t! Learning how to relax is simple but not easy. I recommend guided meditations, and you can find many online.

A strong caution about meditating if you have a history of trauma: Meditation can evoke involuntary movements that terrified me the first time I experienced this. I later learned it’s common enough that it seems to have inspired a new specialty in (concierge) mental health. It’s painful. It’s incredibly frightening. And the first two times it happened, my body got stuck in a contorted position for half a minute or so. Bizarre. I believe the correct terminology for this is myoclonic jerk. It’s neurological in origin. Know that it’s a possibility and remind yourself before practicing. Then if it happens, maybe it won’t terrify you the way it terrified me the first couple of times it happened.

Movement:

PEM makes movement difficult. When I got my second COVID infection, I was walking every morning at least an hour. Brisk walk, not some leisurely stroll. Now I can barely get to my mailbox without feeling like I’ll faint. I tried so many different ways of moving to see if there’s anything I can tolerate. I tried yoga, tai chi, qi gong, and belly dancing. The problem with all those methods, for me, is the tension in my body.

Then one day, I got myself stuck in one of those myoclonic jerks, the worst one yet. Incredibly painful, horribly distorted — a pose I couldn’t voluntarily replicate if I tried. I felt a panic coming. “Don’t, Pam,” I said aloud to myself. “If you panic in this stature, you can seriously injure yourself. Don’t do it. Breathe.”

Then, as spontaneously as the myoclonic jerk had started, my body went into fluid movement. Dance, even. Don’t ask me what kind of dance. My body was choreographer and dancer. I was merely observer. This became my preferred method of meditation, until I learned to relax enough to sit in cross-legged position, then half lotus, and now working up to full lotus.

All those words to say, basically, that dance is the best form of movement I’ve found. I’ve since added yoga into my daily practices. If I miss a day of movement, I suffer for having neglected my health.

Conclusion:

Please remember, all of the above is what I’ve found to be of help to me. These aren’t cures, by any means, but these things help me in small ways that add up to moments of feeling human again. I even had one full day earlier this year, my first full pain-free day in more than two years. Your situation won’t be the same as mine. I hope you find something useful here that can help to lighten the burdens of living with long COVID.

Long COVID and Emotions

March 20, 2023 by Pam Boling Leave a Comment

Emotions have a profound impact on our health if we let them control us, versus managing them so we don’t get lost in them. This has been especially true with long COVID. Anger: brutal, long-lasting pain that nothing seems to relieve. Fear and anxiety: even worse than anger. Worry, frustration, sometimes even mild annoyances can interrupt whatever peace I’ve managed to find. I’m not sure why, although I suspect COVID sends our immune systems are in a hyperactive state fighting our diseased bodies. Healing requires vast amounts of energy, in my personal experience of this awful disease. Emotions do too. It almost feels like my body is sending signals to stop robbing my body of critical energy it needs to devote to COVID.

Learning to manage my emotions was essential to life in the early days of long COVID. I’m fortunate that I started a healing journey before my first COVID infection. I’d already made a non-negotiable conviction that I would find a way to heal myself from a lifetime of trauma. I learned to meditate and even astonished myself with learning it easily. I’d already tried countless times and failed. My strong conviction to learn was partially responsible for my success, but I believe grave illness played an even greater role by causing me to be more receptive and open to basically anything that brought relief. Meditation helps to ground me when emotions do take over, which happens a lot less after three years of regular practice abating them.

Learning to interrupt strong emotions is a daunting task, but it’s a simple process. Recognize the emotion. Do whatever it takes to quickly regain control after realizing I’ve lost it. My strategy in the early learning process was to pace, hands in front of me in prayer position, pressing against each other for resistance and pressing the sternum upward into its natural position. I’d pace and breathe until I was calm again. Then I meditate to explore what sparked the emotion, which was often anger in those days. I was angry at the world for “giving” me this illness and had been angry at life since early childhood. But I’d always been able to shake off anger once I calmed down. Forgive and move on, I believed. That’s not what I was doing. I was stuffing the anger inward, into my psyche and into the cells of my body.

With long COVID, I quickly learned that manner of coping is not sustainable. Rather, I wasn’t sustainable unless I learned to get control early in the process, before I found myself on my knees in the floor, sobbing uncontrollably and wanting to die. Uncontrolled emotions and long COVID are not compatible. One exacerbates the other.

You can’t just turn off emotions. They’ll eat you alive if you try. Physical pain was all the motivation I needed to find ways of interrupting and processing strong emotions immediately, rather than letting them take up residence in my mind and body. I’ll talk about anger, since it was the most bothersome emotion, possibly because it induces the most gruesome pain, or perhaps because I spent too many years practicing it. I already realized I had to be careful not to ignore and cram it in. That’s my natural tendency, to scoop myself up, pretend nothing ever happened, and resume life as normal.

The only other option is to examine it until it becomes the mirror reflecting back a life lesson I need. We can huff and puff and blame other people all we want, but when you get right down to it, no one can be responsible for my emotions except me. Someone mean to me? I can choose anger, which will harm me and only me. I made a hard rule for myself early in this disease: I will never again self-harm. I’ve done it my whole life. No more. Anger is self-harm; it causes or intensifies pain. Ergo, I refuse to tolerate it. That’s how simple it is. In concept. In practice, it’s a real doozie. Practice makes perfect though. I pause to “find a lesson” in the harmful emotions, even minor annoyances, exercising that not-angry muscle of accepting what happens, learning something from it, integrating those lessons into my coping skills, then letting the emotion go before it starts growing roots in my body and mind. Over and over, every time I find an opportunity, I spend focused time on turning the emotion around. I falter, of course. I’m human, after all. But now I can reset without disrupting a whole day or worse, and improve my disposition on life in the process. Win-win.

As bad as the harmful emotions are for my COVID symptoms, positive emotions can lift me out of pain completely. I practice gratitude twice a day as a matter of habit and whenever I need a boost throughout my day. The first thing I do every morning is a morning meditation, which always includes gratitude. It is perhaps the most fulfilling emotion I’ve experienced. It’s cleansing and refreshing, and it can lift me from practically any funk. After months of practicing gratitude regularly, I started finding gratitude even in this illness. Not gratitude for the illness; I don’t think that’s possible. I’m grateful for lessons I couldn’t have discovered otherwise, like how to manage anger, for instance. I actively seek joy, reasons to laugh. When I find them, I soak them up, renewing myself. Actively seeking out and engaging with uplifting emotions is an incredibly healing experience.

A crisp morning breeze. A warm cup of tea. Birdsong. A child’s laughter. Simple pleasures within most everyone’s reach. We just have to notice them. It won’t cure me, but being open to joy makes all my moments easier.

May you find joy, gratitude, and peace in your journey.

Finding Life Lessons in Long COVID

March 20, 2023 by Pam Boling Leave a Comment

COVID, in both its acute and intractable states, is a whole-person illness. It infects nearly every body system, if not all of them: respiratory, neurological, cardiovascular, circulatory, gastrointestinal, endocrine.

Long COVID, the seemingly permanent version of it, goes much deeper than any body system though. It leaves nothing untainted. My ability to think is severely impaired and sometimes blocked due to either brain fog or physical pain. Emotions can go from cool to fiery in an instant if I’m not mindful and douse them before they ignite. My spirit was crushed a dozen times a day for more than eighteen months by this horrible disease. No part of my essence remains unchanged, and I can now see clearly how they’re all connected.

This disease takes everything you hold dear and limits whatever is left. What was once routine is now a daunting task. One of the hardest tasks I’ve confronted with long COVID is sleeping. Who’d guess sleeping becomes a chore after illness? In the beginning, four hours was my sleep limit. Anything beyond that left my whole body stiff and painful, the kind of pain that makes you want to stop living. After three years, I’ve worked up to six hours’ sleep, but I still require a morning “un-bedding” of my spine before I can even make coffee. Yeah, I’ve created some new words too, because our language can’t always impart what I need to convey. The un-bedding takes from thirty minutes to five hours, depending on what else might be contributing to my stiffness. Every activity must be time-limited to avoid crashing or pain spikes: sitting, standing, walking, and especially activity that requires the use of my arms.

The deepest wound was the loss of my writing voice. I wrote nothing for two years. I couldn’t write. I tried. I cried. I tried again and cried harder. I’d sit down to my computer with great ideas for starters. Before I could get a blank document open, there’d be a swarm of angry hornets buzzing around in my creative channels. If I made it all the way to typing, I rarely got beyond the first sentence before I was in tears over my paralyzed mind.

That’s enough talk about the suffering though. I’ll revisit that topic later, when I find the courage and stamina for it. There are hundreds if not thousands of personal stories about the horrors of long COVID. I haven’t seen any that talk about what people are learning from it. I don’t deny the horrors. They’re real. They’re often agonizing and unrelenting. The pain and suffering are worse than anything I’ve ever encountered. It impacts every aspect of life. I spent a lot of time wanting desperately to escape this new body. Whenever I found myself dangling at the end of my rope, wanting to let go, the despair always led either to finding some effective mitigation strategy or some newfound wisdom I probably never would have found if I wasn’t so ill. Is there such a thing as bodily wisdom? I think there is, but we lose touch with it in early childhood. COVID granted me access to that and more.

COVID changes you. I believe this pandemic has changed all of us, even those who didn’t get it and didn’t lose someone they love to it. Coming suddenly face-to-face with our own mortality has a profound effect on you. The pandemic itself, even before I knew I had long COVID, caused me to do some serious and objective soul searching. That’s not what I set out to do. I was searching for relief from complex post-traumatic stress disorder (cPTSD) and some weirdly persistent pain that kept traveling from one part of my body to another. The agony of it sent me into survival mode, I believe. Going inside was a mandate from my body, necessary to continue life, which came perilously close to ending mid-2020. I had to learn my body and learn to decipher its cries for help. The only way to learn that was to step out of the control freak role and let it self-correct, to shut up and listen, in other words.

The first major change came after I realized anger was exacerbating my pain. Anger punishes harshly, and I was easily angered by anti-maskers and other insanity I confronted both on- and offline. Once I made the correlation between anger and pain, I made a pact with myself to figure out how to stop getting angry. I made a similar pact in 2019 to find ways to improve my own mental health, after defying many therapists’ attempts to help me. Ironically, the lessons of long COVID showed me the path out of cPTSD. The self-mandated anger cessation was merely the beginning.

My next important lesson was the absolute necessity of practicing self-care and finding self-love. These things don’t come easily to someone who grew up in abuse and poverty. I grew up in a culture that frowns on such ideas and often ostracizes people who seek self-improvement. I had no choice with long COVID, master of my life for the last three years. If COVID says sit, I sit. If COVID says sleep, I sleep. You get the point: necessary and non-negotiable.

One of the most profound revelations that came from long COVID was a detailed roadmap of where and how my body had stored the traumas of my lifetime, both physical and emotional. I couldn’t possibly have recognized what was happening to me if I hadn’t read The Body Keeps the Score by Bessel van der Kolk and In an Unspoken Voice by Peter Levine.

After I was sick in December 2019, an old injury, a broken heel, flared up. It became inflamed, I assumed from my physically demanding job. It got so bad that an orthopedist recommended surgery. Something, intuition or gut instinct, told me not to have surgery. I opted for a wait-and-see approach. I’d kept my rigid boot, so I wore it per doctor’s orders for a month. I quit my job. It was a holiday job, but I had intended to stay on permanent if offered. The inflammation in my foot subsided, and life returned to normal.

A few months later, my neck and shoulders started bothering me. I felt much like I had immediately after that 2003 accident, which resulted in two herniated disks and spinal compression in my neck. I started doing the exercises I’d learned through physical therapy. This is when I realized my gait was imbalanced. I walked with an invisible limp: right hip cocked up, walking on the outside of that foot, with my left leg bearing the bulk of my weight. I added gait retraining to my daily routine. That was about six months into my journey.

I started having sharp, straight-line pain in my abdomen, along the scar from my midline hysterectomy incision. At that point, I was starting to question my sanity. How can an eight-year-old scar suddenly have searing pain again? I wondered aloud while pacing the floor one day. This was after my second infection, which is when I learned it was long COVID that had been causing all that hell the previous year. My son suggested that my immune system was attacking scar tissues. I think he’s right, because every serious injury of my lifetime has re-presented with pains that mimic the acute state.

I also found emotional traumas stored all over my body, the most persistent in my jaw. I’ve had TMJ since I was a teenager. An MRI a decade or so ago revealed a permanently dislocated right jaw. I’ve seen several doctors over the years, tried different therapies, and always tire of the fuss of appliances like mouth guards. I’ve had nocturnal bruxism my whole life, as far as I know. I can’t control what I do in my sleep, I reasoned, and gave up trying to make my TMJ better. Learn to live with it, I convinced myself was the only option I had. I started noticing my jaw relaxing as I worked on the other pains I experienced through the various methods I’ve tried: yoga, meditation, breathing, pressure-point massage, among a few. Eventually the click went away completely. My jaw is no longer dislocated. The COVID work made it disappear, after living with it for more than forty years.

The fact that lifetime ailments are falling away gives me hope. Many are calling this debilitating illness “airborne AIDS.” I can’t accept that. I won’t. I might die of it next week, or I might live another twenty years. I can’t know, but I won’t doom myself by believing I’m doomed. Attitude matters, and I credit my illness with irreversibly changing mine. For the better.

When pain demands all your energy, all your attention, and every ounce of strength you can muster just to exist, nothing else matters. I want peace in my body. I want nothing else when my body screams in pain. There is an absence of desire, except for the desire for pain-free moments. Where there is no desire and no suffering, however brief the moment may be, I want only to savor and appreciate. That’s all. There is only the moment of no-pain. All other pain — emotional, mental, psychological, spiritual — lie dormant in those moments. And I can dance with bliss for a moment.

I won’t lie, it isn’t always easy to achieve this state of focus and clarity. Meditation is one of my best friends nowadays. I rely heavily on it at least twice a day, usually more often. I’ve learned several variations: sitting, walking, standing, lying down, even dancing. Meditation also played an important role in learning to find “gifts” in the torment. It has been a lifesaver for me.

We are stronger than we can ever imagine. We all are. This disease has threatened to end me countless times. For at least a year, probably longer, I had no desire to continue in this body. I spent a few months stuck in the notion of living several years with a disease that will ultimately kill me anyway. We can’t know that won’t be our outcome, but wallowing in self-pity nearly killed me. This was yet another of the discoveries COVID alerted me to: Pity is incredibly destructive. It doesn’t allow me to pull myself out of the deep, dark pitfalls that blend into the perpetual bleak substrate of a long-COVID life.

It taught me to find joy and gratitude, magical emotions that lift me from any funk if I remember to practice them. Everything gets lost in the mire of long COVID if I lose focus. Being ever mindful has taken yet another important role in life for me. How’s your posture? Drop that shoulder! Relax those abs. Breathe with the diaphragm, not all those other muscles. Relax the back. Relax the neck. I constantly remind myself to keep an eye on my body. I always lose focus when I start doing something with my arms: chopping vegetables, washing dishes, typing. Pain brings me back, and I repeat the whole process again. It’s an always-on job.

Perhaps one of the most important lessons I learned from COVID was to actively seek positive experiences and to appreciate all of them with my whole being, even those that might have previously seemed insignificant. No joy is too small. Every smile, every glimmer of hope, every warm glow of gratitude fills me up. I leak like a sieve, so I’m always searching for renewals.

I still get glimpses of hell every single day. I let them have their moments, honor my pain along with my joy. Then I go in search of ways to feel better.

Have you found valuable lessons in long COVID? Have you shared them with other people?

May you find peace in your body. Namaste!

Desperately Seeking Relief

March 20, 2023 by Pam Boling Leave a Comment

“If you want to feel better, you just have to beat yourself up,” I heard myself think earlier this week. I was chilling out, laid back in the recliner, listening to music on earbuds, and pounding my thighs with my fists. It’s true. I first discovered the power of percussing my body accidentally. I was pacing the floor, round and round the room, distracting myself from the pain of long COVID, when I noticed I was absent-mindedly pounding my chest like a gorilla. I’d never done that, never felt any compulsion to pound my chest, and mildly aghast that I would do it.

But, here’s the thing: It felt great!

What the hell is that about? I wondered. And was I imagining that it made me feel better, or did it really make me feel better? I tried it several more times to figure out if it might be a legitimate mitigation strategy for pain. Turns out, it does help. Bizarre, right? I couldn’t make sense of it, but I started using it regularly as a tool for mitigating not only my long COVID pain but also my emotions when they start getting out of hand. I can’t figure out the ”why” of it; I only know it seems to regenerate energy and lessen my pain. If you have long COVID, I suggest trying it. Add some sound while doing it — humming, chanting, groaning, whatever feels right to you. I hope it feels as good to you as it does to me.

It gets better though.

Several months later, while reading about cytokine storms and T-cells, new questions arose, presenting a new rabbit hole: Is it possible to stimulate T-cell production? What are they? Where do they come from? Why don’t our bodies simply produce more T-cells when we’re confronted with diseases like COVID, HIV, or any other autoimmune disorder that mucks them up? “T-cells start in your bone marrow, mature in your thymus and eventually relocate to your lymph tissue or bloodstream,” according to Cleveland Clinic. My understanding is that we basically produce and train up all our T-cells before puberty. After we have that army ready to protect us from any threats, our thymus begins to atrophy and shrink. This is true of all animals: Once the immune system has fully adapted to the environment, the thymus becomes a seemingly useless organ.

But we humans never stopped creating new threats that our T-cells never learned to defend us against. In the animal kingdom, their environment has remained largely unchanged, at least until climate disaster started threatening all Earthly beings. We humans, conversely, have added all manner of unnatural stressors to our environment over the course of our tenure here: cities and their inherent chaos; air and water pollutants; food pollutants and poisons; untenable if not impossible living and working conditions. The list goes on. And on.

Are our T-cells still training for a hunter-gatherer environment? Cave living? Or has our immune system evolved at the same pace as our interference with our natural habitat? I don’t know, but I’m tenacious when it comes to resolving my own curiosity.

What have Traditional Chinese Medicine (TCM), ayurvedic medicine, and other Eastern disciplines to say about T-cells, the immune system, the lymphatic system, the thymus, the spleen? A lot. There are thousands of years invested in those traditions, after all. For some reason, my thoughts kept returning to the spleen and the thymus. I usually pay attention when my mind wanders back to the same topic again and again. My diet had already changed dramatically, so I determined that my spleen was as well-supported as I’m capable of supporting. What about the thymus? Is it even possible to “support” thymus health?

Every source on thymus health that I could find recommends tapping and little else. Ironically, a friend introduced me to tapping several years ago, and I thought it was pure nonsense. This is something I would’ve dismissed immediately if I hadn’t come at long COVID with an open mind, undoubtedly fueled by sheer desperation.

What’s tapping? Exactly what it says: tapping on your body, usually with your fingertips, in different places and different ways. In the case of the thymus, it’s recommended to tap the chest near the top of the sternum to a waltz tempo. I practiced tapping to a waltz tempo daily for several weeks before moving on to different styles of music. If instrumental music doesn’t appeal to you, I recommend starting with either a metronome (there are mobile metronome apps available), to the tempo of nature, or in silence, until you’ve determined if it’s helpful or not. In my own case, I happen to love classical music and love to dance a waltz, so it’s perfect for me. I use all sorts of music now. I just skip either the first or last beat of each measure if it’s in 4/4 time. If you’d like to try it, the thymus is located just below the base of the neck and has two lobes, one on either side of the sternum. I use three fingers and tap with relatively light pressure. Experiment to see what feels good or doesn’t. Do it with different types of music. Back hurting while stirring food? Tap with one hand and stir with the other to see if it helps.

I’ve since discovered other parts of my body that respond well to tapping: the zygomatic/cheekbone; the angle of the mandible/jawbone; the clavicle/collarbone; the patella/kneecap; the calcaneus/heel. The points that respond to tapping seem to correlate to both the lymphatic system and the meridians of the body, neither of which is within my realm of understanding, especially with this COVID-addled brain. I strongly suspect that both acupuncture and acupressure would provide enormous relief for long COVID symptoms. If you can access it, I say give it a try.

I was more than two years into long COVID before discovering this strategy. Every time I discover some new way of making life with COVID more livable, I wish I’d known it since Day One. Will it help you? I don’t know. I hope so, and I hope you discovered this early in your long COVID journey. I include tapping in every morning meditation practice to get my day off to a great start. Other mitigation strategies I use regularly are listed in Navigating Long COVID. I’ll expound on those more in the days and weeks that follow.

If you try this and it helps, please let others know in comments. I honestly have no idea if it’s therapeutic or if I’m experiencing a placebo effect in my own experiments. The mind has powerful influences over our bodies, COVID has convinced me. My hope is that we will someday have a databank of all the effective mitigation strategies people have discovered.

Navigating Long COVID

March 20, 2023 by Pam Boling Leave a Comment

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.