Discover more from Josh's Long COVID
Part 2: The Post-COVID wrecking ball
February 2022 - May 2022 (Month 2-5)
In late February 2022, as things were improving steadily week on week, the acute and subacute infection phases ended and out of nowhere came new symptoms, mostly neurological and cardiovascular in nature. The dreaded Post-COVID phase had begun, where the prognosis changed from weeks and months to years of expected chronic illness. In Week 10, I went from feeling positive and energised about my progress to developing dysautonomia and POTS (postural orthostatic tachycardia syndrome), and had high levels of inflammation throughout my body — the virus had done its’ damage over those first three months and now my immune system was out of control too. My central, peripheral and autonomic nervous systems stopped functioning normally (dysautonomia) and in addition to the original symptoms of the first months I suffered from nerve pain, muscle weakness, muscle twitching, tachycardia when standing or sitting (POTS), nausea, loss of appetite, cold and purple feet and hands, severe anxiety, a quick and strong stress response, restlessness, and so much more. I couldn’t stand to shower, I struggled to sit long enough to be able to shave or even make breakfast. Every small activity was a Herculean effort and I’d collapse back into bed, heart pounding relentlessly. I was bed-bound for the better part of a month in this phase, but again, it improved slowly, slowly, slowly. Radical acceptance and rest was the only way through. I learned about pacing, energy envelopes and lessons from the ME/CFS and dysautonomia communities. I relied entirely on my partner, Sabine, for the physical labour of running a busy household with two kids for months on end. It was obvious that I couldn’t work like this, so I finally went on long-term sick leave from work. I couldn’t walk more than a block or two, or drive a car, let alone do anything that resembled exercise. I could barely hold my concentration and energy long enough to play a short video game, watch TV, or read. Contrasted with my exhaustion from barely doing anything during the day, I would lay awake at night restless, legs twitching uncontrollably, and unable to sleep. When I finally would sleep, it would be 10 hours or more, only to wake up exhausted and start the cycle all over again.
The prevailing sentiment at that time in the Long COVID community was that dysautonomia was caused by some combination of nerve damage, an overactive sympathetic nervous system (fight or flight), autoimmunity, or an overactive immune response in the form of ongoing and excessive inflammation in the body. With that in mind, but no hope for treatments from traditional medicine, I headed to a TCM practitioner (traditional Chinese medicine) and told her my story. After one acupuncture session, I was sold. The nerve pain and twitching muscles at night stopped that very day. I felt calmer and more myself, and most importantly, I felt hope for the first time. The downside of my acupuncture experience (aside from having needles stuck into you) was that I would experience a strong crash and collapse the day after and only lingering benefits in the following days. But it was enough, and I persevered for three months of weekly sessions. In addition to TCM, I leaned into what I already knew about breathwork, mindfulness meditation, and turned to the comforting philosophies about life and suffering in Buddhism. I practised various kinds of controlled breathing two or three times a day, and saw immediate impacts. I could drop my heart rate, breathing rate and boost HRV (a measure of your autonomic nervous system and stress) in one short sitting. It was immediate, albeit temporary relief from a nervous system that wouldn’t slow down. I read books, improved the regularity of my meditation practice, listened to many mindfulness teachings, and found moments where I could actually reflect on not only my situation, but my life as a whole. There were slices of peace amongst the turmoil.
Somewhere around April 2022, I also started speaking with various specialists to slowly start to figure out what was going on and what I could do about it. But no doctor really knew what to do. They had no or very limited experience treating Long COVID, most had never even heard of things like POTS and all the usual diagnostics and tests came back normal. It was a dark phase of seeking answers, treatment or care in a foreign medical system. German as a second language is hard enough, try speaking medical lingo with doctors and nurses where time is short! I am grateful however for finding a few medical professionals that did at least listen with a sympathetic ear, although no real treatments were offered.
It was at this time however that I did find support in the form of an online COVID-19 support group from Body Politic. Here I found people that had suffered since the first wave of the pandemic, people with severe ME/CFS, bed-bound and unable to lift their heads from their pillows. I suddenly considered myself fortunate to have only a moderate Long COVID experience. These people, ten thousand of them, split off into groups focusing on certain areas of their illness — sleep and fatigue, dysautonomia, circulatory, mental health, allergy and immunology and so on. I made friends, we shared resources, we supported each other through crashes and victories, relapses and reinfections. I can’t say it often enough, but this group of once strangers became like my extended family, following all the ups and downs of each others’ illnesses, and normalising our experience for each other. I couldn’t have survived so well without these people, without this peer support.