For the record: the experience of "mild to moderate" COVID-19, days 90 - 120
There are numerous lingering or recurring COVID symptoms after day 90. Some of mine have only now really come to the forefront of my experience, since acutely painful symptoms have receded enough to allow for a closer awareness of them. The majority of these seem to be neurological.
The Central Nervous System - a tripped breaker
Recently I joined the COVID-19 Brain Study—a global study of how the virus affects cognition. I did not expect to do as poorly as I did on the study's cognitive function tests, so my results were a bit depressing. I knew I was having significant short-term memory problems during COVID, but I didn't quite realize the extent. I've been struggling for weeks to grasp certain words while speaking, experiencing an inability to recall them in the moment I want to use them. I've constantly lost my recall of why I walked into a room for something, standing there staring blankly like a goldfish for some minutes, trying to remember what I was doing before I even walked into the room. Most notably, I've often been unable to retain even a tiny inkling of what activities I've done the night before, what movie I watched, etc. I have to ask my partner to try to jog my memory, sometimes requiring him to recount several details before the light comes on again in my head. I've also noticed that my capacity to form new neural pathways is delayed. For example, if I move a jar of something -- tea, for example -- to a new location, I keep repeatedly going back to the old location looking for it. This isn't normal for me. Typically, I may only go looking for something in its old place once (if even that) and then a new neural pathway forms to help me remember that it is kept in a different place now. My mother jokes that this is her normal, but I should not be operating with the brain of a 70 year-old.
All of these brain lapses are new within the relatively short time span of this disease. I'm not suddenly going through perimenopause. I most certainly am distracted by the trauma of what I've endured and the chaos in the world right now, as I haven't been able to focus on much else. Many of us, with or without COVID, are experiencing this. However, distraction itself does not account for the full abyss of short-term memory loss I've been struggling with. I have never before in my life lost my words like this. I'm a writer and a scholar -- words are my medium (other than my visual art mediums). The poor results I got on the COVID-19 Brain Study were a jarring indicator of the persistent neurological impacts of this disease.
Thankfully, it doesn't seem entirely permanent, as the days tick by and some of my neuroplasticity seems restored. I did remember the new spot for the jar just recently, and was proud (and relieved). I've previously experienced head injury, about 30 years ago. Right after the accident that caused it, I was incapable of counting coins in the till at work. I gave people back the wrong change from their fish and chips orders, and my creepy boss fired me for deciding to leave my shift early to go to the hospital. I remember the confusion of trying to understand what was happening to me, as I vomited into a pan while being prepped for my CT scan. I have felt some similar disorienting head injury effects from COVID-19.
At different stages of this disease, I've had severe all-over headaches that wouldn't quit for a sequence of nights -- not regular-type headaches that go away with painkillers, but a pushing-against-my-skull-plates-kind of headache that extended into the roots of my front teeth/ sinuses. A number of weeks back, I felt pressure in my skull that made my eyeballs feel hot and bulgy, though I didn't have a fever. My eyeballs even looked a bit bulgy in the mirror, which was weird, and my mother remarked on this from a selfie I'd sent her. My bloodwork for Graves' disease came back negative, so my bulging eyeballs aren't thyroid related, thankfully. I also had some minor vision disturbances with this: lint-like floaters in my line of view, like little squiggly threads of light, as well as slightly blurred vision, off and on. The emergency room doctor I'd told about the disturbances had shrugged it off, so I forgot about it (ha!) in the onslaught of the more immediate life-threatening symptoms.
My central nervous system, however, still behaves like a tripped breaker. The internal vibrations I've experienced all along have continued, albeit much more subtly in recent days. These deeply interior, high-frequency tremors are only noticeable at night if I wake up from sleep because of them, or in the morning when I first wake up. I can feel them in my torso and sometimes in my arms. They are not externally visible -- I don't shake -- it's just some glitch at my core. I'm planning to try acupuncture for this, in order to reset the fuse, so to speak.
Finally, I also have periodic, recurring tinnitus, and my coordination is COMPLETELY off. Not only have I been exceptionally klutzy around the house in the past couple of months, injuring my toes and shins, but yesterday I seriously wiped out on my bike yet again, for no real reason -- for the second time since this disease took hold of me. That is not something I would ever do -- I'm a cyclist, for gods' sake. The last time I wiped out on my bicycle previous to COVID was in grade 6. My reflexes have always been finely tuned, like a cat.
The Peripheral Nervous System
Many of the acute phase symptoms I experienced earlier on (and still occasionally experience) are what seem like autonomic nervous system dysfunction: tachycardia and breathlessness, blood pressure drop, heart palpitations, body temperature deregulation, severe night sweats, extreme thirst, diarrhea, rapid weight loss, decreased bladder control, panic attacks/ extreme anxiety, dizziness when standing up, etc. These symptoms subside and then reappear with the occasional blips in recovery.
Likewise, other aspects of my peripheral nervous system have not fully recovered, either. I've had lingering nerve pain, as traveling sensations in my upper chest and left arm, including through my armpit. I've also had continued joint pain in two symmetrical ring finger knuckles, and one toe continuously goes numb.
Temporary, clarifying relief
Recently, I was provided the dawning realization that with COVID, all along I have been like a frog in a pot of water, mostly unaware of the neurological damage I've endured -- you know how the old theory goes: put frog in pot of water, turn heat on and let it slowly heat up, and frog never knows it's boiling to death because the heat is so gradual (please don't try this at home, folks). My realization came in the form of a pill called Pepcid. My doctor suggested I try an otc antacid to relieve some of my lung symptoms, believing they may stem from acid reflux. I've seen references online of Pepcid (famotidine) being successfully used by a number of COVID sufferers, and also that it may have other indicators for COVID. My first dose of it was life-altering. Let me explain:
I have had ongoing severe sinusitis and post-nasal drip, including inflamed inner ears, aching and swollen face, and headaches with eyeball pressure (as I mentioned). As I lay in bed the first time after taking Pepcid, waiting to fall asleep (which typically takes me an hour), I could feel a slow and miraculous clearing of my sinuses -- the ENTIRE sinus cavity system: maxillary, frontal, ethmoid and sphenoid. Suddenly, there was air flow in my skull like I haven't experienced in months. I felt my ear canals clear out, almost like when you pop your ears driving up a mountain. And then my brain also changed. Suddenly, I started smelling toast. It was 12am, the house was shut down for the night, and there was no real toast happening anywhere. Tired and anticipating sleep, I didn't give it much thought. Shortly after, I fell asleep, breathing better than I have in awhile. Then, I woke up sometime in the middle of the night, smelling hot plastic. I thought maybe the bedroom fan, that I use for white noise to help me sleep, might be about to catch on fire. Tired enough to not really care, I fell back asleep. When I woke up in the morning, bright and clear at 6am (this never happens!), I smelled toast again. I realized at this point that I was having olfactory hallucinations. I got up and walked into the bathroom, and smelled things that I haven't smelled in months -- like the fresh air that comes in through the window with its heady, moist plant and tree wafts. I hadn't even realized that my sense of smell had been cut down to less than half, until I got it back again. The only smells I've actually been registering have been the stronger ones, like very ripe bananas placed directly under my nose, or the intoxicating milkweed blossoms on the walking trail. I cannot express the joy I felt at regaining some part of myself, and the dread of knowing it depends on taking a pill containing an histamine H2-receptor antagonist. Does COVID cause histamine intolerance? And do my new hallucinations indicate wider neurological damage than what I've already identified?
On Day 110, I relapsed kind of badly. It was more frightening than previous relapses because of new symptoms and problems that appeared. First, I had a weird taste anomaly that evening when I was eating salad for supper: instead of salad, it tasted like I was chewing on aluminum foil. More notably, however, my blood oxygen level dropped. This happened after being back at the hospital for a complete pulmonary function test. I was asked to take a salbutamol inhaler for the test, and while it seemed to help me breathe a little easier in the moment, it also caused thick phlegm and congestion in my lungs and throat, a while later. Before I went to bed that night, the tachycardia had come back, for the first time in weeks -- I knew that salbutamol could cause rapid heart rate, but this was hours later. I went to sleep with my resting heart rate well up into the 90s, feeling my pulse throbbing in my face. I was woken up around 5am by stabbing heart/ chest pain and nerve pain shooting across my chest and down my left arm again. My partner used a pulse oximeter to check my heart rate and noticed that my blood oxygen level had taken a deep dive, down to 79%. This was a case of what is being referred to now in medical circles as 'happy hypoxia', particular to COVID-19, where gasping for air when severely oxygen deprived just doesn't happen like it should. My partner didn't tell me that I was unwittingly suffocating at the time, so as not to trigger panic, but instead told me to start taking some deep, steady breaths for a few minutes. I'd thought he meant to just get my heart rate down. He waited a while, until my blood oxygen level went back up to within normal range, before letting us both go back to sleep. The fact that my blood oxygen level stabilized with controlled conscious breathing tells me it was likely related to dysautonomia -- as in, my autonomic nervous system forgot to make sure I was breathing while unconscious, similar to, but not quite sleep apnea. My blood pressure also, in the past week, dropped again to a critically low number (77/60), leaving me extremely dizzy when I tried to get up out of bed -- another dysautonomic feature.
The week before this, I'd managed to cycle 60kms (before the bike wipe-out). I felt I was solidly on the road to full recovery. Now, I'm limited to slow walking once more, for all the reasons. Right now, performing a simple exercise causes my heart rate to skyrocket again. It's like I'm back to where I was a month ago, in some regards, and have begun again at ground zero with the rehabilitation efforts.
What we now know is that COVID-19 attacks multiple systems (all at once or one after the other). This requires a holistic approach to recovery, but Western medicine is not set up to do this. What this has meant for me is continuous wading through the system in order to access numerous disconnected specialists: cardiologist, pulmonologist, neurologist, osteopath, physiotherapist, massage therapist... and then piecing together the information gleaned from each in an attempt to compose a whole picture. One must find the resolve to vehemently advocate for oneself, while also being sick and compromised, but this is nothing new -- particularly not for those who suffer chronic illness.
Recently, I started sessions with a very knowledgeable and respectful osteopath. This has been a bit of a life- and sanity-saver at this stage of the disease. She has amazed me with the explanations and solutions she's provided for some of the remaining difficulties I've been having. One of the first places she worked in my body is a large nerve bundle that sits under the armpit. She wasn't at all surprised about the location of my nerve pain because this particular nerve bundle, she explained, is affected by heart and lung issues. Finally, a thing that makes sense! An answer. This is huge! Every time a piece of the puzzle comes together, not only do I experience physical relief, but psychological relief as well.
The osteopath also worked around my stomach, diaphragm and ribs, loosening tension on my left side in order to help me breathe easier. She effectively showed me that my remaining lung issues are caused by an overall stressed lymph drainage system, including kidneys, by working with my body's fluid channels to show me how my lungs could open up fully again when she applied pressure to certain areas. She explained that the pericarditis (fluid around the heart) and fluid in/around my lungs had put extra stress on my lymph drainage. This answer was the most important of all, because I have had a cough and oozing fluid in my lungs on and off for 16 weeks now. But also importantly, she identified the need to loosen a specific type of tissue at the base of my skull, where I've had a lot of pain, so that fluid drainage can happen there to release pressure in the upper skull and relieve the headaches. There is still more work to do, and I wish I could have started working with her much sooner, but facilities like this have only just reopened their doors to clients now. This kind of care simply wasn't available two or three weeks ago.
I've also started working with a physiotherapist, who has prescribed a sequence of gentle exercises to strengthen the musculature around my spine, as well as expand my thoracic cavity. I have an old spinal compression fracture (T7) from being rear-ended in 2007, and I've explained to a number of healthcare specialists now that I think the virus may have gotten into my spine through this fracture point. I FELT it happening and it was excruciatingly painful in the specific vertebrae, causing me to fear my distant old age almost as much as I was fearing immediate death. However, the physiotherapy is having some beneficial effects, and allowing me to feel a bit more in control of my body once more. My physiotherapist suggested I get a Fitbit, to start monitoring my fluctuating heart rate and better understand what my actual threshold for physical activity is now, instead of just guessing at it and paying the (relapse) consequences later.
The Farce of COVID Health Policy/ Neglecting COVID Rehab for Longhaulers
Thankfully, my GP is open-minded and understanding (she's the one who prescribed the above treatments, after all), but is still fixated on finding a 'diagnosis' that doesn't necessarily include COVID-19. It is due diligence on her part to rule out other serious things, so I applaud her thoroughness and feel gratitude. For now, she is keen to see the results of the nerve conduction tests she ordered for me, and strongly suspects something abnormal will show up there, but is otherwise attributing my other symptoms to possible hyperthyroidism. This is also a brand new possibility since COVID, and which requires a fifth round of bloodwork.
But, dear readers, we have to ask: Why the overall reluctance in the medical and wider health policy community to recognize or diagnose COVID-19 based on ample, mounting clinical evidence? Especially when it most certainly skews the numbers in terms of how many actually HAVE COVID?
Many of us, when we finally were allowed to get a test, weeks or a month later, tested negative, which for us really only indicates the virus was no longer dominant in our sinuses at the time of testing. Also, because many of us haven't had a fever, which remains the number one clinical diagnostic symptom -- even though contact tracing professionals in the U.S. argue on social media that fever is not one of the common symptoms they see in emergent COVID infections and spreads (folks, this is NOT a flu - get tf over it already). It is known that fever may never appear. And, because WHO guidelines are decidedly conservative at best. The WHO has still not recognized that people suffer COVID for much longer than two weeks, which is ludicrous. Recently, I was part of a group of COVID survivors who released an open letter to provincial public health officials in Canada asking for recognition and support for long-term COVID sufferers. The Toronto Star published this recent article on it. There are many other similar articles beginning to appear (I've included some links at the end of this post) in mainstream media across the globe. I can't help but ponder the possibility that the liability of confirming COVID based on the now broadly publicized clinical set of symptoms like mine, is too overwhelming for federal governments to ponder paying out for -- such as with long-term disability payments, for example -- for those like me who keep relapsing, over and over again. I simply have no other explanation for the widely practiced, gross neglect of long-term COVID sufferers.
Taking a New Stance - disabling ableist thinking, and going for the eventual win
I struggle to resolve myself to a long-term view of coping with this illness, even as the weeks tick by and I remain sick and at half-capacity. 'Sick girl' has never been how I see myself and I have never related to the 'sick girl' stereotype. Before now, I always understood that meeting my manic goals relied on optimal health (thanks to growing up in the 70s and 80s -- Participaction, The 20-minute workout, Jane Fonda...), so I deeply invested myself in it. Admittedly, this reeks of ableist thinking and I continue to process the level of health privilege I once possessed, but no longer do.
My first reactions to this disease included the classic, "WHY ME?" helpless questioning that accompanies sudden loss and grief. I tried to reason with the universe: But I've worked hard to protect my health and maintain a high-functioning lifestyle. I've often impressed upon my son that health is *everything*, chastising him when he'd sit around playing video games, drink a Coke behind my back, or admit to eating a donut for breakfast. But, ultimately, I learned a lesson in humility: COVID simply doesn't care how healthy you are to begin with -- the debilitating illness knocks down any and all. I don't like health limitations like the new ones I face (as if anybody does), but now they are here and I don't know how much longer they will remain. My PhD supervisor has suggested that I may not be able to get back to my PhD until next year, for a number of reasons. I'm not willing to accept that yet, but it is becoming a larger, hard lesson in learning to understand that there are things in my life I just can't control... like my grown son's diet. And pandemics.
At present, I try to find meaning in the prolonged recovery process. I was invited to join a film project called Alone Together, and have begun vlogging about my recovery. Also, I have been seeing turtles everywhere I go this summer -- on my walks and during peaceful kayaking. I try to draw upon these frequent sightings as messages to slow down, and to keep protecting myself a while longer. I have seen Eastern snapping turtles, Painted turtles, possibly a Spotted turtle and once, a Blanding's turtle. So, I will keep listening to turtle and slow down, pace myself to a crawl when need be. I've always been good at endurance, so this will be the new marathon. The slow marathon, the turtle marathon. And I trust that I will eventually win.
I've pledged to cycle 200kms (1/4 of what I used to do), in order to work towards reconditioning my heart and lungs, and raise money for the SickKids Foundation. Support my recovery by sponsoring my ride in August. You'll donate to fight kid's cancer through the Great Cycle Challenge Canada
Final thoughts: I recently attended a seminar with Cardio-pulmonary rehab specialist, Dr. Noah Greenspan of the Pulmonary Wellness Foundation. His excellent guidance included the assertion that COVID is a shapeshifter that can look like many different diseases at once, and that it is a "scorched earth" condition. This very much resonates with my earlier (first) post about the pandemic, where I compared it to a photo I took of the Stirling Mountain Ranges in Western Australia, ravaged by wildfire -- and where the grass trees had already started blossoming, with florets resembling coronavirus (see below). In fact, wildfire is an apt analogy, as "inflammation is the hallmark of COVID" (Dr. Greenspan).
Fire = flame. 2020 has been a wildfire year, in all these respects.
Noah highlighted that the medical community is treating COVID as a "MCI" -- a "mass casualty incident" where only life or death cases are being prioritized. This type of language refers to natural disasters, and war. At this point, I can say with confidence that I am a COVID Veteran. I fought for my life, and I've survived (so far). Dr. Greenspan has asserted that nobody should be talking about permanent damage yet, because this is new and we can't really know, so I remain hopeful that with continued rehabilitation, knowing my limits, and pushing myself progressively, up to just before those limits, I will completely recover. Noah says, "You're only going to recover as fast as your slowest system." That system, folks, is the neurological system.
The following is a new list of add-on remedies I've been using in this later-stage of the disease (accompanying some of the remedies I listed in my first COVID blog post), which does not constitute medical advice - just varia that I have been trying, in order to combat lingering symptoms:
Saffron - as tea or cooked in rice. This was offered to me as a story -- a remedy that came from a dream, by an woman who prayed for help for her family to get over COVID after her usual indigenous traditional remedies failed. According to her lived experience, saffron worked for her, and her family. Yes, it's anecdotal, but scientific research into the medicinal properties of saffron suggest that it is entirely effective for numerous disease effects of COVID, such as depression, neurodegeneration, nervous system issues, eye problems, cardiovascular disease, shortness of breath, gastrointestinal disorders, inflammation and immune system regulation. I am a HUGE believer in visionary dreams. Saffron has the extra bonus of being an aphrodisiac and supports uterine wellness.
Horsetail tea - to repair lung tissue.
Noble Laurel (Bay Laurel) essential oil applied to the bottoms of my feet in order to clear my lungs and support bronchial function.
Intermittent fasting - I may have developed a hiatal hernia (from all the coughing?), with a brand new experience of acid reflux and stomach pain at night when I lay down, or sometimes after eating. Intermittent fasting means not eating between 8pm - 12pm, as in, no bedtime snacks or breakfast. Some sources have indicated that the stomach medication I was first prescribed, Pantoprazole, can worsen the effects of COVID by allowing it easier entry into the gastrointenstinal tract through reducing stomach acid. It can also reactivate C. Difficile for the same reason - great. That might explain my ongoing battle with diarrhea. I had C. Difficile in 2011. COVID preys on all the weaknesses you have!
Bio-K - for restoring gut microbiome.
Biotin - for my brittle nails and hair, which have gotten bad during COVID (thyroid-related issues! I have thyroid nodules).
Holy Basil tea - to calm the nervous system, anti-inflammatory, and so many other benefits.
MSM (Methylsulfonylmethane) - I'm using this in hopes of helping my joint pain, but the jury is still out on whether it's working or not. I'm convinced my joint pain was caused by Pantoprazole - that bastardly medication is known to deteriorate bones, and I think it created another vulnerability in my system that let the COVID in. I only got joint pain after taking Pantoprazole -- like immediately after, and now it seems here to stay.
Calcium - I've added this to my huge vitamin intake each day, after my doctor recommended it.
Sea salt - I've increased my salt intake, to help with the low blood pressure issue.
Compression stockings - I'm back on these, since learning that they will help with dysautonomic dizziness.
Heated eye pillow (silk) - dry, burning eye relief.
More resources (I will keep adding to these as time goes on):
Pulmonary Wellness & Rehabilitation Center and Foundation in NYC (offering pulmonary wellness bootcamps)
Take The Covid-19 Surveys (for confirmed and unconfirmed cases)
The Longhauler Saga - global media
Covid-19: Why are people suffering long-term symptoms? (15-minute podcast)