For the record: The experience of "mild to moderate" COVID-19, days 1 - 90.
Part 1: A Timeline of Physical Symptoms
Round 1/3 - INFECTION (March 12 - 31)
In March 2020, I was in Western Australia working on my PhD. My partner had come along with me for a few months, after which he planned to return to Canada. I was renting a room in an Airbnb for five months, since I was scheduled to go overseas at the end of May for a much-anticipated artist residency at the Museum of Witchcraft and Magic, and then on to Canada from there, for another two-month residency in a lab at l'Université de Montreal. I was filled with enthusiasm, excited about my research and reveling in the time I had in Perth. My life outside of research centred on cycling. It was my main mode of transportation, and all my time off was spent ripping along the stunning stretches of bike path that traverse the west coast, threading together one golden beach after another. I cycled close to 200kms a week, laughing as I raced with my partner, or breathless with the beauty of the sunsets over the Indian Ocean. Life was simple and good. I was in peak health.
My partner's elderly father suddenly went into rapid decline and then critical care in late February. My partner got on a plane to Cyprus and made it just in time to hold his father's hand and say goodbye. There were no lockdowns at that point, and SARS Cov-2 had not quite yet flagged mainstream concern, but was quickly beginning to. He returned to Perth after the funeral, on March 8. I was, at that time, on a short period of "sick" leave, for a mental health break. When he returned, coronavirus-shit immediately hit the fan and we decided to self-isolate in our room, mainly because the owner of the house was continuing to rent out the other rooms to international travelers from hard-hit countries, like Germany, France, the UK, etc., including cruise ship passengers, while also going off for regular dinner parties and inviting groups of friends over. We were worried. He continued shaking hands with strangers and standing too close, flouting the new distancing rules as they unfolded.
Four days later, on March 12, my partner and I both became sick. Days later, we would discover that the Emirates flight he had taken from Cyprus via Dubai saw confirmed COVID-19 cases on the same flight the day before and after, though he never received notification about his specific flight. My symptoms began with a major sore throat and postnasal drip, coupled with splitting headaches, ongoing for 10 days. During those 10 days, I developed the infamous dry cough and started having trouble breathing. My sinuses swelled up to the point of feeling thick all the way down into my esophagus. We managed to buy the last thermometer on the pharmacy shelf, but my temperature kept reading below normal: 36.5, then 36, 35.5, etc. I thought the thermometer must be broken. Then it went up to 37.5, but never higher than that. My partner's symptoms were barely noticeable (he is 10 years younger than I am), though he, too, had the sore throat and headaches, on and off again. By March 20, following five days of feeling my lips continuously tingling and still not being able to breathe properly, I called the national healthline and was told to go for assessment. I was given the wrong information, wrong phone numbers, wrong directions.
I eventually unraveled the misinformation and made my way to the COVID clinic in the city centre. They outright refused to test me, citing that I did not meet the three required testing criteria: I did not have a fever, I had not traveled, and I had not been in contact with a "confirmed case." My partner was also refused testing because even though he had traveled and had symptoms, he didn't have a fever and his flight didn't yet have confirmed cases. They snidely sent us home, behaving as if we were over-reacting. I was told, "it's probably just a regular cold." The woman assessing me did everything short of rolling her eyes at me and told me not to come back again unless I was "gasping for breath," as she explained it.
When we returned home from the clinic, with official notices in hand that we did not require further assessment, the owner of the house told us that we had to leave as soon as possible. He neglected to take his own irresponsible behavior into account and instead accused us of threatening his life. He trembled in panic as he exclaimed that he didn't even wash his hands that much, and my partner had touched things like the toaster handle in the kitchen (I had barely left the room). We had to be gone by the end of the month, a mere week and a half away. Suddenly, I was facing homelessness in a foreign country during a global pandemic and the rapidly advancing lockdown, while trying to self-isolate.
I immediately began looking online for apartments, and undergoing the laborious process of applying for rental approval (credit checks, etc). I managed right away to secure a place that I really liked and was approved for, but then suddenly the apartment owner could no longer leave to go take up his new job overseas, because England was already going under lockdown. So, the apartment fell through. I went through another week of desperately attempting to find another furnished apartment, but was competing with a new surge of frantic others who also had to leave shared housing. I had the distinct disadvantage of not being an Australian citizen, so property owners were wary of giving me a long-term lease when they could cherry pick from a number of suitable citizens. I still had restricted (socially distanced) viewings lined up, but then was offered a discount on a house rental, which we could move into the next day, if I paid cash. I quickly agreed and cancelled the other viewings. The next day, that option too was yanked away as the owner informed us that an American family just off a cruise ship had offered significantly more for the house. At this point, my partner and I bought airline tickets back to Canada in preparation for the worst case scenario - having to leave the country and fly again, in the middle of the pandemic. We secured the last possible flights out, hoping to come up with an alternative. Air Canada was offering full refunds on cancellations, so we knew we could cancel last minute, and hoped we would be able to still find a place to live.
I also turned to the university for help. This futile effort left me feeling utterly exasperated and abandoned, slipping through every possible crack there was to slip through. They passed me around like a hot potato, from administrative bureaucrat to bureaucrat, doing nothing. They offered me temporary student housing, but it was unfurnished: not even a bed sheet or utensil included. How could I live in a completely empty apartment during a lockdown, with no way to even go buy the things I needed? Nobody gave me tangible answers. My supervisors tried to help, offering me a temporary bed in their homes, but this wasn't feasible by any stretch. Then the Australian government issued its stimulus package, which included support to everyone in Australia except international students. Instead, we were officially told to, "go home." All international students at the university were allowed to go home and do their coursework online, except HDRs (higher degree by research, meaning non-coursework postgraduate students). I begged the university to grant me overseas research leave so that I could continue my PhD from a distance during the crisis, and they consistently refused, citing insurance limitations since a university travel ban was in place and I was technically paid by the university. The Canadian consulate in Australia was sending daily emails in all caps, urging Canadians to leave immediately while they still could.
Nearing the end of March, my symptoms seemed to taper off and I felt I was pretty much recovered. My lung capacity wasn't quite what it was before (I still couldn't take a full deep breath), but the other things had cleared up. I'd been taking numerous antiviral supplements from the get-go, like ginseng, shiitake mushroom extract, cordyceps mushroom extract, red algae extract, lion's mane mushroom extract, aged black garlic extract, numerous herbal teas and vitamins (C, D), ate a ton of raw garlic as well, and inhaled eucalyptus steam repeatedly throughout the days. It seemed like these things had worked wonders. I never got gastrointestinal issues, nor feverish. I never got overly exhausted, and continued cycling outdoors a bit throughout the three and a half week period (I had a minor bike wipe-out and scraped up my leg and drove my tooth through my lip - this becomes important later).
We got on our flight back to Canada on April 2. I was heartbroken, having been forced to suspend my PhD and leave everything behind for the unforeseeable future. I cut off some old leggings and t-shirts to make no-sew masks for the flight, so that we could reduce the risk of transmission. It was a small grace, in retrospect, that I'd already been on "sick" leave and therefore had no physical contact with my supervisors or friends after becoming infected. I hadn't even been to campus, except one trip to pick up and drop off some belongings after everyone else had been told to work from home.
None of the airports we passed through (Perth, Sydney, Vancouver, Montreal, Ottawa) bothered checking people for symptoms. It was a completely voluntary admission, consisting of ticking some boxes on a sheet of paper. I saw numerous obviously ill, feverish people waved through. Many travelers hadn't bothered with masks, and none of the gate agents wore masks. I will never really know if I had already recovered from one strain of COVID-19 and got infected with another during the trip, or if my ensuing severe illness was a relapse of the same one.
Round 2/3 - THE ACUTE PHASE (April 3-30)
We landed back in Canada, exhausted, on April 3 and were "served" upon arrival at customs with the threat of a million dollar fine if we left our home for any reason over the next two weeks. We were greeted at home by grocery drop-offs from good friends, and then hunkered down for cabin fever and quarantine jokes. I, however, didn't make the two week quarantine. My symptoms came back with a vengeance by April 7 (sore throat, coughing, ocular migraines, trouble breathing, extreme postnasal drip) and then I was ushered to the hospital by ambulance on April 9 after suffering severe stabbing heart pain and pressure that felt like a heavy man was standing on my chest, and a squeezing/tingling sensation with weakness in my left arm, as well as pain shooting up into my neck from my stomach - all the indicators of a heart attack. After a "normal" ECG at the emergency room, I was sent to the local COVID clinic for testing (a month after the initial onset of my symptoms). After my COVID test, which the nurse performed very carefully and gently so as to avoid causing me much pain, I saw a doctor who prescribed narcotics (TEVA-EMTEC) for the chest pain. She told me that I likely had a "mild" case of COVID and inflamed bronchial tubes. The pharmacy delivered the medication the next day and I tried to get by with it.
In the next few days that followed, I started having major stomach pain as well as heart palpitations, and the heart/chest pain and pressure didn't go away, even with the codeine. My arm continued to feel squeezed and tingly. I couldn't sleep laying down flat, and had to prop myself up on 4 or 5 pillows just to try to get through the night. I tried laying on my stomach (which helped me breathe better), tried hunching over on my knees or over a pillow, etc. By April 12, my COVID test came back negative. I called 811 about the ongoing chest pain and a doctor called me back the next day. After describing my symptoms to him, he told me it was probably just anxiety and offered me a prescription for anxiety medication. I knew he was wrong and declined the prescription. I decided to go back to the hospital when the chest pain/pressure, arm pressure, tingling and numbness, and serious pain shooting from my heart area in the front through to my back (shoulder blade area), etc continued for another day.
On April 14, I was diagnosed with pericarditis, an inflammation of the lining around the heart. It was diagnosed after a lung x-ray, though the dr. told me that my lungs themselves looked "fine". I didn't find out until later, when a cardiologist was reviewing the notes on the x-ray document, that the x-ray showed "deterioration" in my left upper lung (near my heart). I was prescribed Naproxen (an anti-inflammatory, or NSAID) as well as a proton pump inhibitor (Pantoprazole) for my stomach. I left the hospital again to wait for the delivery of the medication the next day. However, I was back at the hospital via ambulance before the medication even had a chance to arrive in the morning.
When I woke up on the morning of April 15, I felt like I was very drunk. I moved my head to the side and the room started spinning. I tried to get up from bed and puked violently. My partner took my blood pressure using our home blood pressure cuff and it read 70/50, alarmingly low. I couldn't even walk. He called 911 and prepared a bag for me, with food and water and all of my cards and paperwork. My blood pressure somewhat stabilized during the ambulance ride, and when I arrived at the hospital, it was deemed within "normal" range again. The intake nurse thus wheeled me into the waiting room and left me sitting there in a wheelchair, wincing with chest pain, for four hours. It seemed that if I wasn't immediately dying or requiring intubation, she didn't want to deal with me, even though I was the only one in the waiting room. My partner was not allowed to be there, but came to drop off the medication I was supposed to be taking. I took the Pantoprazole and Naproxen in the waiting room, and by the time the intake nurse got around to seeing me, my ECG didn't show anything irregular anymore and she nastily scolded me, saying, "I don't know what you expect us to do! Everything is perfectly normal." I went home very upset and hoped that the new medication would help in the coming days.
Things got drastically worse after that, over the next two weeks. I didn't know if I was suffering side effects of the medication or if it was the worsening disease (I found out later by comparing symptoms with hundreds of other people, that most of it was the disease, not the drugs). My entire body started to feel like it was on fire at night, though I didn't have a fever and my skin was cool to the touch. Regardless, I sweat the bed every night. My body temperature regulation felt disabled and during the day, and I didn't know how many layers of pyjamas and sweaters and socks to wear. And then joint pain started. I have never had joint pain in my life, but it began suddenly in one finger knuckle: my left ring finger. Then it spread to my right ring finger. Then my toes, the equivalent toes to the ring fingers. Then one toe went numb. Then it spread to my spine, and the excruciating pain in my spine felt like a hole in my soul that some icy winds of a frozen hell were whistling through - I could barely breathe in without wondering if my life was going to be sucked out through it. My esophagus ached like it was raw and swollen, and my lungs felt like they were full of fine glass powder. And then the joint pain spread deeper into my bones - specifically my left jaw bone. I also, at this time, started having violent diarrhea, emptying my body of all nutrients and liquid. The diarrhea lasted about a week, and I was desperately drinking litres of an orange juice and salt water mix to restore my electrolytes. The thirst was like nothing I've ever known during this period, and I was consuming 12-14 glasses of water a day. By the end of the two weeks, I'd lost 10 lbs.
I also developed a bizarre, deep internal tremor, like my entire nervous system was utterly fried by some electric shock. It was an uncontrollable vibration from a core place in my body (not muscular), always bad in the night and still vibrating when I got up in the morning. My head felt squeezed by an immense pressure, like my brain was swelling, and the headaches were intense and dizzying, with a jerky, vertigo feeling like I might faint. My sinuses were swollen and my face hurt, and constant postnasal drip choked me at night as soon as I tried to lay my head back at all. The shooting pain up my neck (into my thyroid?) continued over the days, my skin got really dried out and my eyeballs started burning. I also lost my sense of taste (but not my smell entirely) for about 24 hours. My eggs and toast breakfast just tasted like slimy and spongy textures, and I couldn't register the salt that I'd put on them.
Also, at this time, superficial blood clots appeared in my left leg, at the place where I'd had a couple of abrasions from my bike wipe-out a month earlier. Hard, painful lumps had quickly formed and would *intensely* throb and ache at night, waking me up from whatever slumber I'd manage to fall into. The toes on my left foot clenched involuntarily at night as well (but not my right foot), and no matter how much I tried to stretch them out, they curled tightly over on themselves again. I had pains on the outside of my left leg, with no visible clues as to why. I also had weird muscle cramps at the tops of my calves, that came and went at night, out of the blue. I started wearing compression stockings during my daytime bed rest, since at this point I had not moved out of bed for days and was terrified of deeper clots. I'd had D-dimer bloodwork done, early on when the clots in my leg first formed, to check for deep vein thrombosis, and the results came back negative. The doctor at the time told me they were superficial thrombophlebitis and nothing serious to worry about because they were at the sides of my leg and not at the back of my knee. There was no answer for why they would suddenly appear, at the site of an old injury that had already healed, and throb relentlessly at night.
I had other vein or nerve sensations as well - pain frequently shooting up my left arm on both sides of the inside of my elbow. Everything was happening on the left side of my body only, and the headaches were on the right side of my head. Everything except some recurring pain in my right lower back, deeper than muscle pain, and I wondered if it was a kidney. I was in utter despair, knowing I was having a brush with death and feeling unsure if I'd ever get better from this mysterious disease that nobody knew much about.
Then one day, my heart really started freaking out. My resting heart rate shot up past 135, very suddenly, and no manner of strong will, breathing exercises or relaxation techniques would bring it down to anything resembling normal. It remained around 113 overnight, causing me to feel breathless and unbelievably anxious, and afraid to fall asleep. It continued to fluctuate wildly between mid-80s and low-100s the next day, pounding in my head and veins. I thought the drugs were causing it. In fact, it was a result of the disease, I later discovered as atypical symptoms of COVID-19 started to become known. I also started having stronger heart palpitations, and all this caused me severe panic attacks, back to back.
When I called the medical clinic again about what I thought were serious side effects of the Naproxen/Pantoprazole combo, I was prescribed Celebrex to try instead, which is a lower dose anti-inflammatory (NSAID). I was on this for three days and my symptoms/side effects became worse, with intestinal distress so intense that I wondered if aliens had impregnated me and would rip through my abdomen at any moment. I then spoke to another doctor, over the phone, who told me to get off the Celebrex because I had systemic inflammation and needed to take another drug instead: Prednisone, which is a steroid. I felt extremely hesitant about jumping onto yet another medication and went back to the hospital again for a second opinion, and physical assessment. I was completely at my wits' end. This was my eighth trip to the emergency room, because I didn't yet have a family doctor in Quebec (the waiting list is extremely backed up). After more bloodwork, I was told there were none of the usual indicators of systemic inflammation and that Prednisone was a "dirty drug", so I decided not to take it. The attending doctor instead prescribed a steroid nasal spray to help with the postnasal drip, and told me that nothing serious was wrong. I got very tired of hearing this. Again, it was suggested that anxiety was the culprit. I explained to him that I'd also started having issues with my urethra, and didn't seem to have full control over my bladder anymore. He looked perplexed and said that there were so many symptoms over so many weeks that they couldn't possibly all be related, and left it at that. My skyrocketing heart rate was shrugged off, and I was told that as long as it didn't stay over 120 for more than an hour at a time, I should be fine. The chest pain (in my heart) was still intense. He instructed me to stop paying attention to my symptoms--as if that were possible--and that paying attention to my body was causing the anxiety, and thus the problems. I requested (for the third time) to see a cardiologist, and finally got a referral.
Round 3/3 - THE LONG HAUL (May 1-present)
My normal resting heart rate is no higher than 65, and typically around 60 or lower - I have been a pretty serious cyclist for a few years now, and do yoga regularly (or I did). My heart stayed racing and pounding for over three weeks, with daily palpitations. My partner would wake up at night and check to see if I was still breathing. Another doctor dismissively advised me to stop all medications and instead go talk to a psychologist. I had already proactively been speaking on the phone weekly with a counselor for a number of weeks, to help with the panic attacks and some of the traumatic stress I was feeling. I went off the medication as advised, and instead began a strict regimen of natural anti-inflammatories and blood thinners (turmeric, bromelain, CBD oil, etc) and an aggressive anti-inflammatory diet. I will detail the things I tried after I finish going through the physical symptoms timeline. Simply going off the medications did not alleviate symptoms other than to ease the bowel issues a bit and the whole body burning sensation, so I then realized that most of the things I was experiencing weren't side effects. I continued to fervently research anti-virals, anti-inflammatories, and other beneficial foods, herbs and supplements that were within my reach, and started to see some slow improvements.
On May 14, the cardiologist's office finally called. My resting heart rate was still at 110 when I had my visit. He listened to my chest, my back and pulled out his miniature ultrasound device to look for inflammation. He said he couldn't see any fluid around my heart, meaning the pericarditis had apparently cleared up, but scheduled me for a full echocardiogram and stress test at the hospital. This was scheduled for two weeks away. I went home again, being told once again that there was nothing of immediate concern. I asked insistently about the ongoing elevated heart rate, which he said may be because my heart was "de-conditioned" from inactivity during quarantine and not being able to get out of bed for so many days. This may have been partly right, because when I later made sure to include an hour-long walk, twice a day in my recovery regimen, my heart rate started to stabilize, though not consistently.
I was told that the palpitations were "probably normal". They weren't normal because I don't have heart palpitations on a daily basis in my usual, disease-free life and they continued for weeks after my heart rate somewhat leveled out again. There was no mention of possible COVID complications, because as long as I had a negative test result, the immediate dismissive assumption was that I didn't have the disease, regardless of the known inaccuracy of the tests. Researchers now know there are severe complications to the heart and entire cardiovascular system caused by COVID, but my cardiologist seemed utterly oblivious to this. He told me that my chest pain wasn't heart-related. He had looked for all the well-known heart problems using the diagnostic tools at hand, and I was essentially patted on the back and sent away. My eventual echocardiogram and stress test were deemed "normal" even though the palpitations and elevated heart rate continued.
Some days after my first visit with the cardiologist, the sore throat and sinusitis cycled back around AGAIN and I developed a new, persistent cough and stabbing lung pain on both sides of my chest. My Eustachian tubes (between the ears and throat) started aching and I found myself once again choking on postnasal drip. Also, I could feel fluid oozing around my lungs when I got up from a reclining position, that restricted my breathing but went away after I stood up for a few minutes. Another new symptom had also appeared: shooting nerve pain fanning across my chest, under my left armpit, down my left arm. Other times it was in my leg, as well as once or twice in my urethra. The numb toe stayed numb. The joint pain in my fingers and toes continued. The inner vibrating continued but lessened ever so slightly. I went back to my new family doctor (finally got one after 8 years in Quebec) for a second visit, and she looked into my ears and found inflammation on the right side, where I had told her the pain was worst. She told me the steroid nasal spray should clear it up. I asked her about my oozing fluid lungs and she said she didn't know what would cause that, but scheduled another lung x-ray, more bloodwork and prescribed osteopathy, massage therapy, physiotherapy and psychotherapy. She also referred me to be fitted with a holter heart monitor, but said it could take months to get it. She reiterated that doctors know that COVID tests are inaccurate. She took notes of all my symptoms. I asked if I could get an antibody test for COVID, but she said that they aren't available in Canada, and they aren't accurate enough. She then admitted that modern medicine can't treat everything alone and that the other therapies may discover some other causes to the many, many problems I have been having, or at least help alleviate them.
As of June 7 (day 87), I began to feel more like myself but I had the sore throat appear again - is this round 4? The postnasal drip has made a comeback. Each time the symptoms resurface for another round, they are less severe and shorter in duration, like my body is slowly building up more immunity. My chest/ heart pain is almost completely gone, but the oozing fluid (which I suspect is minor pulmonary effusion) remains and my lung capacity is diminished. The little cough stuck at the top of my throat lingers on, with a foamy feeling. The joint pain is becoming slowly fainter but is still there off and on, as is the nerve pain. My heart rate is mostly back to normal, and the palpitations have become fewer and far between - once in a while I still feel the veins pounding heavily throughout my body, usually if I try to do yoga or have a hot bath. My gastrointestinal system is mostly back to a state of equilibrium, with an occasional setback. I still have the deep internal vibrations that sometimes wake me up from sleep, as well as the occasional "kidney" feeling pain. But, I am far, far better than I was, even just two weeks ago. Finally, I have recently gotten out for a gentle bike ride, restoring some of the joy to my life.
Part 1 Takeaways: COVID-19 has been for me, and many others like me, a disease that encapsulates a number of known disease-like symptoms, all at once or one after the other: heart disease, cardiovascular disease, osteoarthritis, pulmonary disease, neurological degenerative disease, GI tract diseases, autoimimmune disease, etc. Some who hear about it (but haven't had it) have compared it to Lyme disease that they've suffered from. I haven't had Lyme, so I don't know how it compares, other than the psychological impacts of mis- or non-diagnosis and belittling/ misunderstanding by the medical and other communities.
I've discovered that neurologists now know that the disease is a complicated constellation of symptoms that most resemble post-viral dysautonomia.
Part 2: The psychological and social impacts of having COVID-19
For me, and for numerous others I have talked to, having COVID-19 is hugely traumatic. It is a culmination of traumatic stress that manifests in overwhelming feelings of serious danger, grief, loss, anxiety, panic, isolation and alienation. I have and sometimes continue to feel all these things. There has also been feelings of despair as more and more symptoms bombard the body, wondering what life-threatening horror comes next.
The anxiety and panic that came from having COVID-19 at a time when the world was reeling with the rapid spread and unknown full consequences of the first wave, was utterly crippling. I couldn't function for a number of weeks, not only due to the immobilizing physical symptoms but also because my body was in constant fight/flight mode. I had a full week of panic attack after panic attack, triggered by little things. If I saw yet another news article headline that mentioned COVID deaths (especially from heart-related issues), I would immediately downward spiral into a panic attack. If I was watching a movie with a sudden loud bang, I would burst into tears and a panic attack would ensue. I tried four times, over three weeks, to get through one episode of Westworld, and couldn't do it. I woke up in the night having panic attacks caused by nightmares. I cried every single day for approximately two months, out of exhaustion, which fed into the panic. I had to sit very quietly in a chair by the open bedroom window with a soft blanket around my shoulders, drinking cup of tea after cup of tea and watching the buds appear on the leaves, and then birds twitterpated and building their nests, and then the blossoms and leaves coming out in full, an entire season passing while just trying to focus on the delights of nature and nothing else, to make it through an afternoon, one day at a time, one week at a time. I watched people laughing in the park, visible outside my bedroom window, and those cycling by with full vitality, and kept telling myself one day again, it would be me out there, full of life. I had to perform breathing exercises that would reset my autonomic nervous system and stop the attacks. I had to meditate on a happy place where I can feel safe and at peace. I felt like I was having a nervous breakdown, and maybe I was.
I was also deeply aggrieved by sometimes feeling I was futilely fighting something that was trying very hard to kill me, with the possibility of facing death alone. Every solitary visit to the emergency room drove this home, deeper and deeper. This grief still sits heavy in my chest, even though the threat of death has become far more distant now. My life (and the lives of others) has felt increasingly precious and fragile, directly under threat, by both the virus within me and by every stupid, careless or cocky, infantile person outside who doesn't take precautions. The frustration over this causes me to gnash my teeth in worry about my family, some of whom are extremely vulnerable, and none of whom I've been able to see for months. My life and well-being also depends on theirs.
In my state of grief over everything I'd so suddenly lost in my personal life (MY HEALTH, my PhD and career progress, being able to plan for my future, ability to participate in professional networks and activities, ability to do anything productive whatsoever) as well as the loss of others' lives, including a friend not much older than me who suddenly died, I broke down and contemplated everything and everyone I needed to forgive. The weight of carrying any more burdens was untenable. I forgave my partner for any wrong thing he'd ever done in our relationship, because he was exhausting himself caring for me. I forgave some of the stupid mistakes and trespasses by others in my past. I dropped whatever I could from my psyche, that no longer needed to be there, because I felt so burdened and broken, that my voice could barely rise above the whisper of a frightened little girl, for a time. I could hardly recognize myself (and anyone who knows me would find this hard to imagine). I figured I needed to work on healing my emotional heart as much as my physiological one. I also gained a deeper appreciation and respect for the strength and endurance of anyone dealing with chronic pain and disease. I developed a deeper understanding of the challenges that my grandmother has been living with every day for the last decade, because I was experiencing many of the same things she experiences on a daily basis. I felt like an 87 year-old woman, despite my tiny, frightened girl voice.
The isolation, alienation and desperation are interconnected impacts, aggravated by the lack of knowledge (and some sexist ignorance) about COVID-19 in the healthcare system. Feeling critically ill and unable to depend at all on the institutions that are meant to diagnose, treat and heal, has been horrifying. I'm not a blind devotee of conventional medicine, by any stretch - I have my strong feminist criticisms and much of my PhD is about this. But, I also work in a bioscience field and value aspects of scientific progress, promoting those that include a blended approach to medicine, and that respect what people (especially women) tell healthcare providers about what is happening in their bodies. But with COVID-19, medicine has *really* let many of us down, in an epic failure of adequate response and a denial of the presence of the disease itself, outside of a narrow set of symptoms. We have been invalidated and ignored, sometimes arrogantly, and other times from a basic lack of knowledge or direction in the system. This can be life threatening, but also incredibly alienating, as directorates from the health authorities negate the severe experiences of the disease that many COVID sufferers have. It leaves us feeling crazy, doubted by doctors, doubted by friends, doubted by strangers, and even doubted by insensitive or ignorant family members. It's the false accusation of hysteria all over again. It is medical gaslighting, because the 'authorities' aren't actually in control of the situation but need populaces to think that they are. I struggled with this a great deal, until I found support groups - especially the Body Politic COVID-19 Recovery Support Group, facilitated by a "queer feminist wellness collective" (hello, witches!) based in NY.
But before this, I built my own essential support group. First, a young artist in France reached out to me. She saw a Facebook post I'd made about chest pain, and confided in me about her ongoing COVID experience. She urged me to continue seeking medical care and not ignore my symptoms. Over the weeks, she became an absolute lifeline, because she was the only person who understood what I was going through, and she was appropriately pissed with the ignorance and lack of care from the French medical system. Then an associate mentioned knowing someone in Montreal (another female artist) who was going through the exact same things I was, and urged me to contact her. When I reached out to her, again there was a flood of exchange between us as we compared our identical symptoms. The only difference was that she still had no sense of taste or smell after two months, and had tested positive once in the four times she'd been tested (the other three were negative). Her pericarditis and heart stuff also seemed a bit more acute than mine. I connected her with the first woman, and then we became a support bubble of three. Shortly afterwards, I was contacted by another woman in Montreal whom a mutual friend had sent my way, also with pericarditis and the other stuff. We then became four - pillars holding shelter together, helping each other cope with the daily reality of recurring symptoms, medical failure, and periodic feelings of hopelessness, as well as sharing any helpful information and resources. These women are now, and have been, critical supports in my recovery progress. It was the second woman who told me about The Body Politic COVID recovery support group, and I quickly signed up.
Within this larger support group online, I found a phenomenal number (thousands) of other people who had all experienced the same enduring symptoms as I had, to an alarmingly precise degree (duration, timing, symptom types). Many of us became ill in mid-March. Pericarditis was a top symptom, as well as the other other heart-related issues: palpitations, rapid heart rate, weird vein and nerve pain on the left side of the body. Also, the internal vibrations, joint pain, etc etc etc. My experience of isolating illness became an experience of a being part of a diseased organism, collectively unwell. The group spawned a study that showed aspects of this data, mentioned in this article (the link to the study is provided in a list of resources at the end). People who tested positive were most likely the ones who had lost their sense of taste and smell while those who tested negative hadn't, but the range of symptoms was otherwise the same. This correlates with my mini support group of women artists: two of us tested negative, one was never tested, and one tested positive after numerous tests. Yet, we have all experienced the *exact* same things in varying degrees of severity.
Medical practitioners in Canada need to be guided by listening to patients, and by health policy makers who do the work of quickly and doggedly staying up to date with the most important COVID research happening globally. Doctors themselves can't be expected to work all day taking care of others and then research all night to make sure they have all the info. They are also limited by the health authorities in the approaches they can take to the disease. Different countries' health authorities are not learning enough from each other, not paying attention to research that is gaining the most traction. Quebec, where I live, has not responded appropriately to the disease, evidenced by the fact that it has the highest number of cases and deaths in Canada. If they want to open up sooner than recommended, they should prioritize better treatment and care, especially long-term and follow up care. According to my friend in France, there are already epidemiology studies happening in Paris to assess longer-term, atypical symptoms of COVID. Not that France is doing perfectly in the crisis either, but much of Canada is pathetically still stuck on the mandate to only wear a mask if you have fever or cough, despite international advice from scientists studying the disease, and stuck on international travel as the main mode of transmission instead of better supporting communities to reduce spread. Community transmission is now massive enough to render the question, "have you traveled in the past 14 days?" almost moot. Because of these shortfalls in prevention awareness, in Quebec, we are (some of us) under the bizarre delusion that, as one man said to me when he saw me headed into the pharmacy wearing a mask, "Le COVID? C'est fini!"
Unfortunately, "the COVID" is not over for me, nor many others like me.
As one astute article put it (can't remember exactly which one, but I have linked to it here in the text somewhere): the only people no longer affected by COVID are the ones who have died.
Part 3: The Full-time Job of Healing and Recovery
Here, I'm going to share my own experience with recovery approaches that may be of interest or use to some of those still suffering COVID-19, or anyone taking care of someone suffering COVID-19. I've been privileged to have some economic security throughout this, and have been able to afford some expensive supplements, so I recognize that not all of my approaches may be practical. I also recognize that my relative privilege (and having the support of a partner with privilege) has afforded me recovery that very tragically hasn't been afforded to others.
Also, none of my text constitutes medical advice and I am not advocating for anyone to do what I did, because every body is different and nobody actually knows how to best treat COVID-19. I also need to say that many of the medical practitioners I've seen have been kind, and usually concerned, although often at a loss for what is wrong and what to do about it. Some certainly have been predictable, old school assholes, while others have inappropriately expressed their frustrations directly at me. Luckily, my new family doctor is pretty great, and open-minded. I appreciate the people who have tried to help me, and who have put their own lives at risk to offer some kind of care, any care, during this crisis. Importantly, though, throughout this ordeal, I have had it proven to me over and over again, that the care networks that have healed me the most have been the wise women in my life (and often their partners), who have gathered closely around me and lent their strength, knowledge, time, hearts and resources.
Other than the endless blobs of indistinguishable time and rest, breathing exercises interspersed with very gentle aerobic exercise (walking slowly) and some minor stretching, below are the things I've tried with some degree of success and no side effects. The list of what I've used to try to heal myself has science behind it for dealing with numerous non-COVID-related issues, but many of which occur with COVID-19. It has felt like the virus attacked numerous systems in my body and I adapted my approach to account for this, switching herbs/supplements every so often as I felt I needed to, in order to address different concerns. It felt to me that I had to keep surprising the virus with new kinds of defenses, as it kept surprising me with new attacks. Some of the supplements I took were ones I heard about through COVID healing success stories on the support group pages.
Remember, I didn't take these all at once.
Vitamin C - continuous, at least 2000mg/day plus as many selected fruits and vegetables, and pure (no sugar added) juices as I could stuff into myself. I drank blueberry, cranberry, pomegranate, orange, orange-mango and pineapple juices, usually diluted with water.
Vitamin D - continuous, at 1000IU/day, which I ramped up to 2000IU/day when my lungs were compromised the most.
I complemented Vitamin D with Oregano Oil when I needed extra lung support. I also added NutriBiotic grapefruit seed extract to my water when I was fighting lung infection.
Vitamin B12 - continuous, first taken as nutritional yeast added to my food, and then at the end, I switched to B12 drops which has given me an excellent energy boost (and I am using this to rebuild my red blood cells).
Zinc - periodically at first, but consistently after round 2 of symptoms hit.
Raw honey, typically whatever has been local - continuously, but especially for the sore throat and postnasal drip. I used liquid honey and also manuka honey lozenges.
WATER - a fuck-ton of water, continuously - a minimum of 1.5L/day but preferably quite a bit more. Water is full of oxygen (H2O), but also essential for fighting inflammation, one doctor told me. I felt very strongly that this virus did best in a dehydrated body, so I wasn't going to give it that extra edge.
Eucalyptus oil - daily brief steam inhalations (5 minutes) for as long as I felt I needed them (I still sometimes need them) to deal with bronchial inflammation and sinusitis. I also used a humidifier with eucalyptus oil at night, when I was having the worst of my chest pain, breathing trouble and sinus pain.
Lavender oil - as needed, for headaches or for trying to calm myself down at night before sleep. I put it in baths (when I felt OK to take a bath again without fear of having a heart attack or stroke). I also put it in epsom salts foot baths, or would rub it between my hands and inhale it before bed. I also drank lavender and chamomile tea to help chill out in the evening, when symptoms would *always* get worse.
Oatmeal - during the worst phase of intestinal distress, this was pretty much all I could eat. It soothed my digestive tract, as well as nerves. I ate it alternately including banana, apple, flax seeds, chia seeds, cinnamon, ginger, oat milk, honey or maple syrup. Maple syrup is also, miraculously, an anti-inflammatory! Small mercies. Once I even ate gruel with onions and garlic. I now eat oatmeal for breakfast every day, since I had to give up eggs (more on this later).
Licorice - I used licorice tea and licorice chewies made with pure licorice extract (and not many other ingredients). This was to also soothe my intestinal tract during the worst bouts of diarrhea. I took it easy with this, though, since it can lower blood pressure and I'd already had a run-in with that.
Turmeric powder - continuous, EXCEPT when I was taking Naproxen (which is also a blood thinner). Turmeric lattes, with oat milk and honey, became my morning coffee. I had to drop coffee completely (due to racing heart), and instead frothed this drink up morning and sometimes at night. It has been a daily comfort. It coated my throat and soothed my stomach, and is also a very effective pain reliever (a COX-2 receptor inhibitor, just like how NSAIDs work), anti-inflammatory, blood thinner and so many other beneficial things I found for dealing with this disease. I didn't overdo it, though, because it also stimulates the thyroid and I didn't want to come out of this disease with hyperthyroidism.
Bromelain - daily (except when taking Naproxen) - a proteolytic pineapple enzyme that dissolves blood clots and scar tissue. I began using bromelain as soon as I went off the Naproxen, because I felt it was critical to continue to thin my blood and do something to prevent clotting - it felt to me like a good complement to the turmeric. Plus, I knew that the disease caused scar tissue formation in vital organs. I have continued taking bromelain since then. The painful clots in my leg have dissolved completely, though some tenderness remains, as well as the mass of scar tissue that had formed where my tooth had gone through my lip. Bromelain has been one of the most important supplements.
Elderberry tincture for immune support, but I didn't use this when I felt in my most acute state of the illness and when I thought my immune system might be attacking my body. I don't have autoimmune disease, but dealing with COVID has felt like a delicate balancing act of supporting immune function but not too much, at certain phases of the illness. My herbalist witch cousin prepared the elderberry and sent it to me in a care package.
Wormwood (artemisia/ mugwort) tincture, also prepared by my cousin - I have used this sporadically and sparingly, because it can be toxic. I have started combining it with small doses of commercially prepared Black Walnut tincture and clove capsules. I also drink artemisia tea, from herb that I gathered myself on my family's farm while out walking with my cousin last year.
Usnea tincture, another anti-viral, also prepared by my cousin.
NAC, or N-acetylcysteine, which occurs in the body but is used as a supplement to bring down inflammation in the bronchial tubes, as well as detox and rebuild the liver (ugh, all those medications I took!) and a number of other things.
Melatonin (3mg) - I took this every night for approximately 3.5 weeks to help me sleep (I was severely sleep deprived), as well as to benefit from its excellent anti-inflammatory action. It was a godsend, but I didn't want to be on it too long in case it might eventually inhibit my own bodily production of it.
Magnesium (500mg) - for neurological support, as well as to help deal with weird muscle cramping.
Liposomal Glutathione - *very* expensive. Your body produces glutathione anyway, from NAC, so this may be an unnecessary supplement other than a jump-start. But when you're fighting for your life, you'll do anything for an extra advantage.
Dan Shen (Red Sage) tincture - this Chinese medicine remedy was recommended to me by an herbalist witch in NY who I know, and who sent it to me in the mail. It supports the blood vessels, heart and brain. I've used this in round 3, to help with trying to kick the last of the issues and rebuild my vascular system. It seems to be what finally stopped the heart pain.
North American Ginseng (capsules, commercial name is Cold FX) - at the onset, and then not again until the later stages of the recovery phase (now).
Cordyceps mushroom extract (powder, capsules) - I used this anti-viral early on in the infection, and have taken it up again in the current stage.
Spirulina powder - mixed in orange juice, this has long been a favourite of mine, for boosting energy. I'm also careful to not overdo this, though, because it is a marine algae and high in iodine, which can mess with thyroid function.
AIR (oxygen) - I've never been so appreciative of basic things like air and water. Practing breathing exercises and attempting to recondition my lungs by being outdoors in the woods or near water has been a central aspect of my recovery.
Mullein (smoke) - no, I didn't smoke it - I burned it in small amounts and allowed the smoke to disburse in the room, breathing it in gently. Mullein is helpful for asthma and opening the bronchial tubes, and smells pretty good, which is calming.
Arnica oil - I used this for muscle and joint pain. I knew I wasn't allergic to the plant (some people are) because I remember picking arnica flowers one summer in the Grand Teton Mountains, in my 20s, to use for medicine. I also love the smell of it.
Sandalwood oil - I rub this on my thyroid (neck area). I really have felt that the virus has been doing something funky with my thyroid, causing shooting pains in that area. I read that sandalwood oil is supposed to balance out an overactive thyroid - could this also be what was causing the accelerated heart rate? I have some excellent sandalwood oil that I got from a visit to a distillery in Western Australia. Plus, very relaxing smell.
Quercitin (capsules) - I have recently started with these, after reading this. It's a bioflavinoid that I have also read elsewhere is good for supporting the body in overcoming disease.
Bone broth, that I make myself from boiling chicken bones, with some vinegar added to the water, along with veggie scraps that I keep in the freezer. This is liquid gold, in my opinion. Grandmother's chicken soup recipe never fails.
Garlic - so much garlic. Raw garlic, crushed on food, or chomped right off the clove with every bite of food. Perhaps the classic vampire repellant works on the bat coronavirus that wants to corrupt my blood and veins?
CBD oil - has saved my ass, as a pain reliever and to calm anxiety. I have a spray that I spritz under my tongue for pretty quick relief.
I've used all these things in different combinations, for different periods of time.
Some other herbal teas I used: marshmallow root, dandelion root, valerian root, nettle leaf, blue butterfly pea flower, lemon balm, ginger. I drank so much herbal tea, but also balanced it out with plenty of water, since a lot of teas are diuretics.
My diet has drastically changed to become a strict anti-inflammatory diet, similar to what people with autoimmune disorders follow. I have had so many areas of inflammation in my body (heart, lungs, throat, esophagus, ears, sinuses, etc) and some new autoimmune symptoms (joint pain), that it became necessary to focus more strongly than I typically already did, on making food my medicine. I'm a hedonistic foodie, so this really sucked, but also I took up the challenge with whatever enthusiasm I could muster. It became my new research project, but it was my partner who prepared all the food according to my needs because for soooooo long (weeks and weeks), I couldn't do ANYTHING but rest, cry, journal desperate affirmations to myself, breathe, listen to guided meditations and watch Netflix or Prime in bed. I've stayed disciplined with the diet, because otherwise, I have guaranteed PAIN and flare ups of symptoms. I'm just grateful that I can actually eat and enjoy food again, any food, after weeks of liquids and oatmeal and no appetite whatsoever. Sometimes I couldn't eat at all because I was so full of anxiety, grief and despair, that I would cry just attempting to put food in my mouth--food which I knew I needed to keep fighting and stay alive. I also went through a period of seeming to easily aspirate my food and liquids, which was odd and scary.
I cut out alcohol completely. Ugh. Both the cardiologist and my family doctor advised this. I miss my occasional gin cocktails, prosecco, glass of wine or Aperol spritz, because they feel like a part of who I am (was), but one day I'll be able to have them again, I tell myself. Perhaps when I can go out freely to a local cocktail bar again.
I cut out caffeine (mainly coffee). Ouch. I adore good, strong coffee in the morning - mmm, espresso-based drinks are my fave. But, I couldn't even do green tea, because a racing heart is not happy with caffeine. Plus, the anxiety caused by having this disease is REAL, and I don't need any extra. I might add green tea back in slowly, soon, because of the benefits it offers.
I cut out sugar, except honey and maple syrup, because they have big health benefits. I don't have a big sweet tooth. I did have a weakness for almond croissants, but, oh well.
I cut out bread, or any other wheat or baked product - all that quarantine bread baking fulfillment no longer applied to me. And no more pasta, couscous, pizza or pierogis, etc. It's actually been surprisingly easy, despite my lifelong passion for toast with butter, but my partner does have to eat his pizza in secret so as not to completely torture me.
I cut out eggs. This one was very hard to give up - I love eggs and ate them for breakfast every day. They have a lot of benefits, but also provoke an inflammation response in the body. As soon as I cut them out, my pain eased off A LOT. I almost ate an egg today, but then I chickened out (haha).
I cut out all dairy. Even yogurt. Dairy is a well-known inflammatory agent, and causes phlegm. I love and miss cheese so much (mmm smoked gouda, feta, brie...), especially on baguette... I substitute sauerkraut for yogurt, to still get probiotics. Also, I have miso, tempeh and small amounts of kombucha from time to time, for the same purpose.
I cut out fried fats. No more delicious, delicious kettle chips for occasional snacks. I've substitued these with nuts - so many nuts - pecans, walnuts, cashews, almonds, brazil nuts (anti-inflammatory, and also to support thyroid). And seeds - sunflower seeds, pumpkin seeds. These really give me my healthy fat fix.
I cut out all members of the nightshade family - tomatoes, potatoes, eggplant, peppers. No more pasta sauce, but I'm not eating pasta anyway, so, meh, whatevs.
So, what can I eat, ffs? I follow some guidelines provided in this paper, since most of my symptoms have been cardiovascular. What is anti-inflammatory to the extreme? Many vegetables. I eat a lot of goddamn vegetables and fruits, especially green vegetables and any berries that don't drain the bank. I eat wildly extravagant salads, with as many omega fatty things in them as I can add at once: olive oil, avocados, nuts and seeds. They also include celery, herbs and berries, but NO tomatoes. I also harvested dandelion greens and fiddleheads from my yard and from the riparian zone along the Ottawa River. I eat fish (mostly local), like cod and salmon, and I eat some seaweed (though not too much again, because of the high iodine). I eat chicken sometimes and beef very rarely. I eat basmati rice once in a while, or quinoa, but I limit that, too. I eat mushrooms, all kinds, but especially shiitake. I eat soups, particularly soups with bone broth and/or coconut milk. I've also been focusing on ACE inhibitors (other than eggs and dairy), like brussels sprouts, prunes, etc. I eat lentils and beans - my fave is baked beans with molasses (iron, anyone?) or dahl with extra cumin. I eat rice pasta sometimes, but also very sparingly. I eat dark chocolate in small amounts, because... small pleasures, and it's healthy. Thankfully, I've gained all the weight back that I lost while at my most wretched. So, I think I can do this anti-inflammatory diet thing for a while, until I feel 110% back to myself. Then, I will devour some of my favourite missing foods and beverages again, slowly and one at a time. Eggs will be first. Then pizza. Then an elderberry gin cocktail. Cheers.
Part 4: Resources
A few important resources (which I will add to and update periodically):
Soleil Cannabis (Canadian)
Other personal accounts of the experience of living with COVID-19
Want to share some resources? Please let me know