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201029 A Mild Case of Covid
by Sonja Mally
I think one of the first words anyone who knows me would use to describe me would be "Introvert" probably followed by words like "eccentric", "tree hugger" and "resting bitch face". The thought of posting intimate details about the trials and tribulations of my life on social media makes me cringe, as my personally preferred method for enduring any sort of suffering is done behind closed doors. For the record: I don't encourage this sort of behaviour, I don't think it's necessarily healthy. It's just how I do.
That being said, I now feel I have a moral obligation to share information that far outweighs my desire to stay quiet and maintain my dignity. Disclaimer: This is very long, unpleasant and way more personal that I want to get. I don't like upsetting anyone, especially not friends or family. But with the way things have been going, this is something that is going to affect many people. I want people to understand the reality of the situation. In light of recent events and conversations, and in lieu of any more awkward attempts on my part to skirt the issue.... Are y'all ready for some oversharing? I'm not. But here we go.
Before the lockdown went into effect and despite already taking precautions, I contracted Covid-19 in March. The person I likely contracted it from had symptoms so mild they didn't think they were worth mentioning at the time.
The initial symptoms were only uncomfortable, somewhat similar to what the CDC outlined. That changed. Weeks went by and I wasn't getting better. Testing was not available to the public at the time and hospitals needed to save space and resources for the critically ill. They were turning people away, saying "Blame Doug Ford". When I was finally able to go to a testing centre after six weeks, they took one look at me and sent me to ER. I was pale, weak, sweating profusely and having trouble breathing but my vitals, X-ray and ECG showed nothing seriously wrong. I waited five hours for a swab and was discharged. My questions about the potential of Covid being a latent or chronic virus clearly irritated the already exhausted doctor. The nurse told me "You're young and healthy. Try not to worry so much!". I, along with many other people deemed mild cases, were left on our own to self-isolate. All I could do at that point was try to learn whatever I could in my waking moments, document my symptoms, pay close attention to my body and try to adapt as things progressed.
The first round attacked my respiratory system. From there it worked its way into my vascular system and spread through my entire body.
This is what it the following half-year looked like....
In between relentless coughing fits I struggled to breathe as every inhalation felt like I was drawing in fluid. I was in and out of consciousness. When I was awake I studied the internal structure and function of the lungs and airways. I slept in prone position and used the postural drainage and chest PT techniques meant for coping with cystic fibrosis. I did breathing exercises. I ordered a blood pressure monitor and a pulse oximeter so I would know if I needed to call an ambulance. I followed a strict anti inflammatory diet and adjusted my supplements and fluid/electrolyte intake. My doctor ordered bloodwork and told me to continue to rest. I tried to make sure any messages from friends or clients I responded to were left off on a nice note, just in case. I waited for recovery but it didn't come.
After about two months symptoms started to shift. The coughing subsided but then I started to become short of breath. I could expand my lungs but I felt like I wasn't getting enough air. My insides hurt. My ears were ringing. My joints ached and nauseating pain radiated through my bones. My muscles ached and felt bruised. I became incredibly weak, which made me angry. Physical weakness has never been an option I've allowed myself. When I tried to force myself to stand and walk an awful, nauseous, crawling sensation spread through my body. My limbs would turn to rubber and I would feel myself lose consciousness. I collapsed several times trying to make it down the hall.
I started having heart palpitations. My veins started to ache and bulge turning very blue and visible. My entire body started to throb. My glands swelled. My nail beds turned purple. Livedo Reticularis, a type of mottled discolouration, formed along my abdomen and Petechial rashes surfaced where the tiny blood vessels burst open under my skin. It looked like bad special effects makeup from a horror movie. Except it was actually happening. I messaged people and told them I loved them.
I read everything I could find on Covid-19's effects on endothelial cells. Drawing connections, I learned about Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, Epstein-Barr virus and Vasculitis. I combed through thousands of terrifying comments and heartbreaking stories in Covid-19 survivor support groups, looking for patterns or clues as to what the hell was happening to me. I waited for my phone appointments with my (very kind but clearly overworked) doctor, which were becoming further and further apart as the system was overwhelmed. Many specialists were no longer taking on new patients and the waiting lists for scans were months long. When I asked about Multisystem Inflammatory Syndrome I was told it was only developing in children or critically ill patients. Mast Cell Activation was extremely rare. She ordered more bloodwork. Everything came back relatively normal. Nobody had any answers.
My heart started beating hard and racing, as if I was bolting up several flights of stairs while lying in bed. It often woke me from my sleep. I had pain in my chest, shooting down my left arm and into my jaw. Cold sweats. Nausea. Pressure. You know, heart attack symptoms. But two ECGs only showed a Right Bundle Branch Block and the doctor wasn't concerned. Blood pooled in any extremity below heart level, turning them purple and causing my blood pressure to drop. I became unable to stand in the shower. The heart rate monitor on my watch showed bradycardia of 40bpm and tachycardia of up to 200bpm. My vision pulsed. Veins broke under my skin. Bruising appeared randomly.
Then there were the migraines. Excruciating and relentless. Sometimes every day. Sometimes lasting days or weeks without pause. Anyone who suffers from migraines knows that vomiting with a migraine is something out of Dante's Inferno. There was plenty of that. I became disoriented and confused. I had trouble understanding language, often losing the ability to read or communicate properly. I had lost my sense of smell in the earlier stages of the virus as a result of olfactory nerve damage, but started to experience phantom smells like burning plastic, sulfur, or something chemically sweet like antifreeze. Food tasted like it had gone bad and I would spit it out constantly. I had mild sensory hallucinations. I kept swatting at insect bites and stings all over my body but there was nothing there. The right side of my face now sits differently from the left.
My skin would burn and turn bright red but the thermometer showed no fever. White lines would be left behind when I drew my finger across my skin. My eyes burned and became bloodshot to the point of veins bursting. My hands and feet became so painfully inflamed they were near useless. Forks, doorknobs, taps. All had to be wrapped with something soft like a bandanna or sock and affixed to my hand. Trying to balance my weight on my feet was precarious and came with mixed results. I started noticing that, despite already being on a miserably restricted, low-histamine/anti inflammatory diet, symptoms would often worsen after eating. Process of elimination and cross checking pointed to a newly developed potential salicylate sensitivity. Which, between that and other telltale signs, probably meant my liver was struggling too. My diet was whittled down to about 11 ingredients.
I dropped weight. I lost all my muscle. My hair thinned. My skin thinned. I no longer recognized my own body. I only left the house to go for medical tests. The exertion of which caused my symptoms to worsen, leaving me bedridden for days afterwards. Often I would have to pay out of pocket as many of the tests for autoimmune diseases are not covered by OHIP. They are not cheap either. If it weren't for the CERB I don't know what I would have done this whole time. I am still waiting for a CT scan. It's scheduled for December. That's over half a year's wait from when it was requested. My doctor says I'm lucky I got one at all as many people are being turned away now. I am still waiting to hear back from specialists. I've been told it may be months to hear from them if I do. The system is flooded. On the way home from the blood lab I see COVID IS A HOAX spray painted on the sides of buildings. People are not wearing masks.
I have no doubt that if things ever return to some semblance of normality there will be hell to pay in terms of the fallout regarding my mental health. Over half a year spent in isolation, not knowing if you are going to die at any moment. The body you've called home your entire life is suddenly alien and volatile. Wanting to make the most of each moment but unable to even step outside to feel the sun on your face because you're now allergic to it. Wondering who is going to take care of your parents or take your place at your friends wedding. All of the promises you won't be able to keep. All of your cherished possessions, all of your artwork sitting in a landfill. It is a very strange, lonely feeling when people mourn your passing while you're still alive. You become a ghost in limbo, watching the people you love and the world you can't participate in move on without you. These things push you to keep fighting but they also take their toll. In my dreams I'm still strong and able-bodied. Waking up is confusing.
In the middle of everything I lost my friend. A huge part of my life for 20 years, she took the witness statement of my youth with her. She had a very mild case of Covid in April. She seemed to have recovered completely but had been complaining to me of what sounded like autonomic nervous system malfunction. She was so scared I was going to die, checking in with me constantly, then suddenly she was gone. The initial shock sent me spiralling and my health started to slide even further. I am still in denial and have not been able to process it. My mind won't accept it. My body won't tolerate it. I am afraid of the fallout from that as well. I will deal with it down the road as it comes. I'm trying to stay focused on gratitude.
It hurts to watch the outside world. The "Covidiots", the selfish narcissists, or those that mean well but don't understand how things work, filling up the comments sections and going about life like this isn't happening. Expecting others to make sacrifices so they don't have to. That's not how this works. The issue is not that things are being blown out of proportion. It's that they weren't taken seriously enough from the start. Not by the government, not by the majority of the public. Of course preventative measures aren't going to look like they're working if they're only being done half-assed. The case numbers you're seeing? They only represent a fraction of those carrying and spreading the virus. We're only months into this pandemic yet people have already become desensitized to it.
This isn't "just a flu". It's not just a respiratory virus. The respiratory system is just one of the entry points the virus uses to get to the bloodstream, sometimes silently, at which point nothing is off limits. It is a frighteningly intelligent and highly adaptable design. The more people continue to help it spread, the more it is able to adapt and mutate. Many people are asymptomatic carriers. Even those who have had it and recovered can still carry it. They are not immune to mutated strains. But if we're not spreading it, it dies off. New Zealand is a better example of how things should have been handled. The sooner people work together (actually work together, not some people doing the right thing while others form new "bubbles" every second day), the sooner we can get back to some kind of normal. Outside of masculinity-crushing Freudian psychological issues, I do not understand why people want to make this something political. This is not politics. This is nature. Nature does not give a fuck. Nature does not care about what you think of Justin Trudeau, Joe Biden or the orange loogie in a suit. Nature does not care if you don't understand the difference between viral particle size and oxygen molecule size. Nature does not care if you are standing exactly six feet away from someone when the air shifts direction, nor does it care if you are carrying a magical talisman of hand sanitizer in your backpack or your mask in your pocket when you meet your friend for brunch. Nature really, REALLY does not care if you have a sexy Halloween costume that you want to show off and you just want to live your best life because only sick or old people are dying and that's not you, right? Nature makes no allowance for excuses or mistakes. It is unfortunate that this pandemic had to come at the same time as society was already suffering from a plague of narcissism and willful ignorance. As someone who has loved and respected nature since childhood, it pisses me off to no end that I have been struck down by a virus that stemmed from humans disrespecting nature.
It's nearing the end of October. I've been in isolation for seven and a half months now. I am mentally and physically exhausted. Doctors have no answers. Tests show nothing. As it's been explained to me, they can't test for it because the tests don't exist yet. This is a brand new Virus, a brand new disease. No one can say what the long term effects are going to be. Did I survive Covid, or am I just dying really slowly? It seems to me that whatever damage this virus has done to my body specifically has been most closely mimicking Mast Cell Activation Syndrome, Myalgic Encephalomyelitis, and Postural Orthostatic Tachycardia Syndrome. I have been learning about them as I go and trying to manage my symptoms on an individual basis based on what I've learned. That is all I can do for now, while I wait for help that may or may not come. This probably sounds all too familiar to those living with Dysautonomia or autoimmune disease.
The reason I am writing all this is; I am not as rare a case as it may comfort you to think. If I were one in a million I would just keep my mouth shut. I would rather not be talking about this. I have heard from many people that they don't know anyone who has had Covid. Trust me, you do. Or you will before this is over. Especially with the way people are treating it. I belong to several groups for Covid-19 survivors. Between them there are literally hundreds of thousands of members and that number is growing rapidly every day. Some have been sick since October of 2019, before anyone was warned the virus was here. Remember the "walking pneumonia flu" that was being reported last winter?
The local Canadian group I most frequent for Covid Long-Haulers had a handful of members when I first joined. Today they are over 7.6 thousand with new members pouring in daily. The focus is on sharing information to help others navigate this nightmare and conducting interviews with the media to help spread the word, so we can educate the public while we wait for the CDC and government to catch up. Like me, many of these "Covid long-haulers" were young, very active, fit and healthy with no pre-existing or underlying conditions. A notable number of them were athletes before they fell ill. As this is a virus that can travel through your entire body and affect any organ, no two cases or experiences are exactly alike. But we all share overlapping symptoms with one another. I documented 80 symptoms, from terrifying to extremely bizarre, and each one of those symptoms were reported by a significant number of other people in these groups.
Around this time last year I was running around the woods, climbing trees and making art. Now I'm trying to retrain my body to walk. I don't know when I'll be able to make art again. One step at a time. This is a "mild" case. I'm still one of the lucky ones.
So there we have it. I've now shared more personal information than I ever wanted to and I'm about to swallow my pride and post it on social media. (Hard cringe) I know that I will probably face backlash for it. Inbox harassment from the types of people I go out of my way to try to avoid for the sake of my sanity. I do not have the energy to argue with them. I know that many people will not bother to read this because of its length and uncomfortable content; we are living in the age of convenience and instant gratification after all. I did not intend on making this easily digestible or comfortable. Nothing about the past 7.5 months of my life (or many others), has been easily digestible or comfortable. If you cannot handle being made to feel slightly uncomfortable (I'm looking at you, fake "medical exemption card" holders) you cannot handle what Covid can potentially do to you. It is a nightmare, but I assure you it is very real. Many people here in Canada can't imagine being denied care if they were sick. Thanks to those not taking this seriously and contributing to the bombardment of a now overwhelmed, underfunded medical system, you will be on your own. The risk is much higher than you think, you're just not seeing it widely reported yet. We're working on that, as well as fighting for visibility, research and funding to help create a break wall for the coming waves and a lifeline for those left treading water in its aftermath.
If you thought you didn't know anyone affected by Covid-19, now you do. That is just one version of what a "mild case" of Covid can look like. There are hundreds of thousands more just like me. When I first got sick in March, nurses were already talking about having to prepare for the upcoming fall/winter/spring when the bad wave hits. We're heading into it now. I am begging people to please be safe and do the right thing. I may lose "friends" for speaking up, but if this post manages to reach one person, helps to influence one decision, that in turn spares one life, it's well worth it. If you took the time to read this, thank you. Please pass it on.
Written by facebook.com/sonja.mally.3
Weird Toronto Lex Gore's best friend
2020 10 29
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