For the record: The experience of 'mild to moderate' COVID-19, Day 150-onwards
Throughout my very long COVID recovery, I have learned to more fully appreciate the power of walking. Walking (daily) has been a solid rope to grab onto, to pull myself up this mountainous task of revitalization. I have walked at least an hour (usually more) almost every single day, before eating in the morning and then again at sunset.
I didn't pay so much attention to walking before. I thought it somewhat banal since I have always preferred the speed and freedom of being on my bike. I typically felt the urge to do a significant walk only if it was with someone I really needed to talk to, in order to facilitate the kind of open flow of words that happens naturally when striding along in unison. Walking has no doubt deepened my relationship with my partner during this entire crisis. Not only has it mitigated our cagey feelings and nervous energy, but it has also allowed us to work through, verbally, all disturbing thoughts, fears, frustrations and misunderstandings. And then, we could watch birds, snakes and frogs to focus outside of ourselves again. Walking has been one of the strongest factors of healing for me.
Walking is distinct from the other two-legged journeys I do. I've also, during these strange months, done woodsy hikes, weekend strolls along bodies of water, as well as some challenging mountain climbing. I have pushed myself to cycle as much as possible on a weekly basis (sometimes causing minor relapses). I've also done my fair share of 10-minute at-home booty workouts, nightly yoga sessions and spontaneous dinner dance parties à deux when I really needed to shake it out. But walking has been the balm.
Plenty of writing and artistic exploration has been done on the topic of the psychologically enriching aspects of wandering and distance walking (stemming from a much older legacy of indigenous walkabouts and roaming). From my contemporary Western perspective, Rebecca Solnit first comes to mind. I also remember learning, in the first year of my masters (of fine arts) program, about the very interesting history of ambulatory practices connected to the unravelling of minds during war times, but also connected to psychogeography--acts of deliberately creating new meaning of space/place (this influenced a couple of art pieces that I later produced). I've previously participated in sound walks, which feel like the first VR experiences to me, including a Janet Cardiff sound walk at Louisiana Museum just outside of Copenhagen, when I was first visiting a foreign country (outside of North America). Also, a jarring electrical sound walk in Montreal by Christina Kubisch, hosted by the Goethe Institute, which was a sonification of all of the electromagnetic activity in the city. These walks changed my perceptions of the locations I was in.
Walking is also an escape from a trapped sense of self or feeling trapped in a body; illness or disability or socially divergent/ poorly understood states of being can lead to this sort of feeling. My uncle David had grown up in the 50s and 60s with autism. His later years, when his mother was no longer alive to look after him, were spent in a care home in a rural community. He was widely known there, for his walking. He walked the bridge over the highway, waving to traffic as he went by. He walked the small town streets and past local park spaces. He was playfully referred to by younger locals as 'Super Dave' for his impressive feats of ceaseless walking. I imagine that walking was a purpose, a tiny freedom and an escape from the mundanity of a room in a house he had no other cause to leave.
Walking now has gradually changed my perspective of uncontrollable disease, precarious recovery and wider cultural adaptations to the pandemic reality. At present, I live next to the Ottawa River, or on the Quebec side, the Outaouais, on First Nation Odawa territory. The river is special: encrusted with a treasure hoard of unnoticed and unappreciated fossils, like orthocones the size of my forearm, ancient worm hole clusters, and a remarkable community of stromatolites. My walk path is exactly along this ancient hotbed of life, which now hosts an old-growth oak forest, snapper turtle nesting sites and marshes that are vibrant with numerous species. During my daily walks, I've monitored both the changing nature scapes and the gradually improving recovery times of my autonomic nervous system: from the days when it was completely out of whack to more recent days as I inch closer to normalcy. I once could barely shuffle along in my pyjama pants for ten minutes, without my heart rate skyrocketing and chest pain immobilizing me. Now, I enjoy measured, fast-paced, almost speed walks with easier breathing, usually no pain and faster resting heart rate recovery.
But I've also developed threads of relationships to others, as I traverse this shared space. There was the distraught cyclist who'd stunned a woodpecker that flew through the spokes of his tires--we stopped (at a safe distance) to help, taking the woodpecker carefully home in a hat and allowing it to safely rest until it could fly back to its familiar trees (didn't take long). There are older couples who still enjoy the civil niceties of a passing 'hello' or 'bonjour' or 'good morning' as we frequent these times/places with each other habitually (I can't say that I've always felt so civil these days). There is the same woman, at the same time, every single day, forever on her phone as she races along to get somewhere(?) and another same woman at the same time, every single day, on the other side of the river in her mask and visor, hovering close to the same bench. In our interactions, there is the common, quiet understanding that we're out here to cope, to do something productive. As a collective effort to keep moving, it is comforting.
Quick Rewind (for the record):
August was about cycling, pushing myself to meet gentle limits and then backing off when necessary. One day, I included a quick bike commute to my dentist's office as part of my overall tally of kms for the month of August (for the Great Cycle Challenge Canada - I raised $1000 for kid's cancer in the end). With my gradual return to cycling, I took it very easy, typically staying at a pace that would keep my heart rate below 140bpm, and typically below 130. However, on this day, I was down to the wire in terms of getting to my appointment on time, so I raced a bit. What happened next was trés bizarre: despite cycling full-tilt for 15-20ish minutes and landing breathless at the dentist's office door, my mandatory temperature reading upon arrival hit just 35.2˚C. I had been worried my temp would read high (and I'd be turned away) because of the exertion I'd just undergone, but instead it bordered on... hypothermia. The receptionist took my temperature again, since it was unusually low, even though the person who had just walked in before me displayed a normal reading. Twice, mine hovered at 35˚C. Typically (before COVID), when I'd do a hard cycle for a short burst and then stop, I'd begin to sweat. That day, I did not sweat a drop, despite the fact that it had been warm and sunny outside. The following day, I did not warm up to a normal body temperature either, until much later in the afternoon when my home thermometer finally reached 37˚C.
The slow adjustment times and backwards functioning has continued, though my system has definitely improved with my current strategies (which I will detail in the following section of this post). When I first got sick, back in early March, I was denied testing because I didn't present with a fever. Instead, my body temperature had, even back then, dropped below normal. This indicates that my autonomic nervous system was reacting from Day 1. Over seven and a half months later, it is still struggling to regain proper function, though there are now impressive signs of significant recovery. I do still have weird body temperature experiences while sleeping -- sopping night sweats, but more strangely, a vampire-like desensitization to cold. I have often woken up in the middle of the night to find myself completely uncovered, with no internal register of being cold even though my skin feels very cold (corpse-like) to the touch. When I cover myself back up, my body starts to deeply quake involuntarily for a few minutes while it readjusts -- definitely not a shiver, but a tremor -- I know what a shiver is, and this ain't it. Also, when cycling, my heart rate behaves weirdly at the bookends of my route: shooting up (sometimes to 150bpm - oops) when I first get going, setting off urgently vibrating Fitbit alarms. Then it slowly stabilizes over the course of about a half hour, but spikes up again to over 120bpm for a while after I've stopped. I experience a similar, less extreme thing when walking (requiring me to slow down my walk at the end, just like an intense workout cool-down). This poorly adjusted heart rate variability (HRV) is the greatest indicator of a stressed and dysfunctioning autonomic nervous system. If it can be believed, my Fitbit stats tell me my nightly HRV is hovering around 21, which is about the HRV of an 80-year old! There may be some glitches in the system, though, as this is a new feature recently rolled out by Fitbit -- so, I'm attentive but not panicking.
My last appointment with my doctor (back in September) was a long-awaited validation and I nearly cried in the parking lot afterwards from relief. She told me: "You are not alone." She had by then seen a number of patients with distinct symptom sets matching mine, enough to feel that a solid clinical basis for diagnosing COVID post-viral effects is on the table. She told me that my ongoing symptoms indicated POTS - postural orthostatic tachycardia syndrome, a form of post-viral dysautonomia affecting blood pressure, heart rate and body temperature in a specific way, among other things controlled by the autonomic and sympathetic nervous systems. Giving her the orthostatics log sheet I'd been filling out over two or three weeks was helpful in confirming her assessment of POTS. I have more testing to go through and results to be assessed (nerve conduction, brain MRI, sleep monitor) before we go on to possibly discuss medical treatment options (which I don't think will be necessary at this point), but she had been happy to hear that I'd been proactive in mitigating dysautonomia with increased salt intake and regularly consuming electrolyte drinks.
I was also seeing a pretty great physiotherapist for a while (as long as my insurance was covering it), and she determined some inflammation in the nerves travelling from my neck, down my arms and all the way to the finger joints that still hurt. With cold laser therapy on my neck, she helped the finger joint and wrist pain somewhat subside. Now, I focus on nightly yoga routines that support my neck and spine, and continue taking glucosamine caplets, which have all helped with lessening the frequency and intensity of the joint pain.
My consultation with the Ear, Nose and Throat (ENT) specialist was also reassuring, as he confirmed that many COVID patients are experiencing phantosmia, particularly the burning smells, stemming from the virus' destruction of some of the cells of the olfactory bulb. He examined my sinuses for polyps and other lesions with a lubed-up wire camera scope (thankfully, I have none of concern), advised me to continue with the steroid nasal spray and to let him know the date of my brain MRI as soon as it is booked (I am still waiting for my appointment booking 3-4 months later). He emphasized that with all of the patients he's seen so far with COVID-induced phantosmia, none have been found with brain tumours, so that I should not worry. He seemed to think that with continued inflammation reduction strategies, I should recover completely. And he was right -- with the current support I have through a health coach I'm working with, I've now managed to get off the steroid nasal spray (as of a couple of weeks ago) and the phantosmia has not returned.
With all the work I've been doing towards recovery, including cycling and yoga, my lung capacity has certainly improved and I am less frequently struggling to get a deep breath (though this does still occur). My heart palpitations have completely stopped now, HALLELUJAH! My GI system is functioning very well again, though I have to sleep on a 12" wedge pillow to control the bizarre acid reflux or GERD-like symptoms that I believe now are causing my lung ooze feeling. My heart rate is normal-ish (sometimes still high, but only moderately) much of the time, and the very low blood pressure and dizziness has completely abated. It seems that with time and my current, very effective course of therapy, my body's orthostatic intolerance is being successfully recalibrated.
Back to Now -- Mymee
September 12 marked six months of COVID, from point of infection through long-haul recovery. I expected to be fully repaired by then. Then October 12 came and went. As November arrives, things are looking a lot better, health-wise. This is in large part due to my rehabilitation program, which I am fortunate and grateful to be enrolled in. I've already discontinued a number of supplements I'd been taking, simply because I'm now at a stage in my recovery (finally) that allows for mainly using diet as medicine and this feels like a pretty major achievement.
For the past six weeks, I have been enrolled in a program called Mymee, which I was referred for by David Putrino, a neurologist and Director of Rehabilitation Innovation research at Mt Sinai in NY. (It also just so happens that David got his PhD at the University of Western Australia! Funny, that!) This program, specializing in healing autoimmune disorders, has been instrumental in getting me over numerous final hurdles in my recovery. Through Mymee, I am on call with a personal health coach once a week who assesses my diet and symptoms to identify triggers. I use the Mymee app to upload photos of my food, log symptoms, bowel movements (including selecting texture description options from slide tabs), water consumption, etc. I've gleaned a lot so far -- like, who knew that strawberries were a histamine trigger? I didn't, and I had been eating a lot of them because they were so readily available at my local farmer's market.
My diet modifications are what some may consider severe, but I don't feel overly limited in food options -- I just have to be more creative, which is not a problem for me. I am completely off all grains (even oats) and all dairy (even my beloved goat cheese). I'm also off a few things I would never have expected to cause problems: I mean, carrots and bananas!? How bananas is that? I'm off all soy products, chocolate and all fermented foods. Some of these things are normally very healthy, but with a whacked out immune and nervous system, they need to (temporarily, at least) be eliminated. This is predominantly an anti-histamine diet.
Current diet: I eat nuts (walnuts, almonds, pecans, cashews) and seeds (pumpkin, sunflower, chia, flax, buckwheat). I eat all kinds of legumes and meats and fish (except pork, because I loathe pork). I eat squash, sweet potatoes and sometimes white potatoes. I eat plenty of leafy greens, brussels sprouts, cucumbers, celery, mushrooms and even eggplant on occasion (despite the fact that it's a nightshade). I eat eggs and good fats: coconut oil, sesame oil, olive oil, fish oils, avocados. My fruit consumption is centred on apples and blueberries, as well as some dried fruits like dates or prunes. I make my own baked goods from almond and chickpea flour and carob. So, I still have plenty of delicious, interesting things to eat and the restricted diet really didn't take that much getting used to. I have almond or coconut milk in my turmeric and matcha lattes (I'm still completely off coffee).
Later stage recovery: self-care strategies (in addition to some of the previous ones discussed in earlier blog posts):
Apple Cider Vinegar - 1tbsp in 1/4c water first thing in the morning and before bed at night. This has been pretty important in helping control the acidy, reflux-like weird stuff that has been happening, as well as easing off the lung ooze a bit and controlling intestinal distress. A bit of a miracle stuff, really!
nuun and/or Hydralyte clinical hydration electrolyte tablets - daily.
Varieties of salt: pink Andean salt (non-iodized), French sea salt (non-iodized), Greek (iodized) sea salt -- I need to keep it mixed up in order to avoid too much iodine!
GABA (Gamma-Aminobutyric Acid) - for neurological soothing, to help with the inner vibrations/ tremors. I take about half of the lowest dose (100mg), which helps me fall asleep fast and wake up with much milder or often unnoticeable tremors. It apparently also helps build exercise tolerance, which is great, but if I take it during the day, I am in a stupor. It's had the extra bonus of completely eliminating any menstrual cramps.
Doubled-up magnesium - increasing my magnesium intake has really helped shake the tremors (no pun intended haha).
CoQ10 Supreme with resveratrol (brain and heart support) - I did this short-term but have now ceased taking it since finishing the bottle.
Folic Acid - helps with supporting neural development (re-development in my case).
Vitamins: B12, C, D (up to 4000IU now), E, biotin, zinc.
Bromelain - this is the big steady, helping with so many things. Again, I cannot say enough good things about bromelain - blood thinner, clot preventer, digestive aid, etc.
Deep tissue foam roller - recommended by my physiotherapist(s) as well as by the Pulmonary Wellness Rehab Centre, to deal with the 'coat hanger' back pain caused by dysautonomia, and to help open up the chest for better breathing. I sometimes roll myself on this against the wall, like a bear scratching itself against a tree trunk.
30˚ foam wedge pillow (12" height) - excellent for dealing with a number of my issues, such as the reflux and possible sleep apnea (still waiting on those test results).
Face Yoga - as funny as this sounds, it's helping me pick my face back up off the floor where it had fallen to throughout this ordeal (and other tragic events this year). Not only do I feel that COVID aged me in appearance, by about ten years, but I also feel like I forgot how to actually smile. The daily Face Yoga is helping me rebuild muscle structure in my face to support a better tendency to smile and feel uplifted. I do a daily program but there are plenty of free guidelines/ exercies online.
No-squat booty workout - probably the most intensive exercise I do now, and each session is *only 10 minutes* long. A small commitment and just enough action to get myself revved up. Over time, I'm starting to like what I'm seeing in the rear-view mirror after all those weeks of bed rest and low activity.
Returning full-time to my PhD research - I have, since September, resumed focus on what gives me a real sense of purpose in life: my creative (art) work and research that is part of my PhD. I'm currently enrolled 'offshore' but I really hope that changes soon and I can get back to Perth, to the campus and labs where I really want to be.
More advocacy/ long-hauler news and important research (will keep adding to these over time):
Evidence Supporting a Phased Immuno-physiological Approach to COVID-19 From Prevention Through Recovery (the approach taken by Mymee)