A year ago around this time, I was standing at the kitchen counter doing dishes and I thought I was going to collapse. My heart was racing, then very slow, I was sweating and I felt as if I would just fall down. I stopped and went to lie down. This scenario was now a familiar one to me. For the last three weeks, I had been taking care of my family who were all sick. One little one had had a fever, then a cough, my other little one had a cough non-stop, my husband coughing and coughing ... I remember thinking if I never hear another cough in my life, it would be good. While they were sick, I was terrified. Scared of COVID, without help. We went to the hospital twice with my littlest one during this time because she was on puffers every hour at one point. Each time, they said we were doing the right thing and just to monitor her. The second time they gave her dexamethasone to help her lungs recover faster. It worked.
All this time I was trying not to get what they had, so that I could take care of them. I had no cough, no fever, nothing. I had a different version of COVID. One that is not being spoken about enough. One that I did not realize I had until months later, when I drove myself to the Jewish General hospital, barely being able to stand. This is why I decided to share my story. To raise awareness and to advocate. This is what happened to me, this is the version that I got.
While caring for my family during the last three weeks of March, 2020, I lost 25 pounds in three weeks. I had no appetite. My heart would race to 170 beats a minute without warning. I had squeezing in my chest. Sour taste in my mouth. I would start sweating. I couldn't sleep at night and would be up for three, four hours at a time in the middle of the night. When I did sleep, I would be woken up out of sleep with a racing heart and sweating. I was so scared I was unable to go back to sleep. Then after a while, my heart rate slowed down enormously. At one point it was below 45 beats per minute. All of these things happened every single day and every single night. For six months.
Around month three, after numerous telehealth and one in person doctor visit, continuing weight loss and complete exhaustion, the likes of which I have never felt before, I got in my car and drove myself to the Jewish General Hospital. I could barely walk from fatigue. They saw me and took me in right away. At this point, one of the doctors there had seen this type of COVID presentation and had me tested immediately. They did abdominal ultrasounds, EKG, echocardiogram, every blood test available, an x-ray of my heart and lungs. All the tests came back normal, the COVID test, negative. I remember the doctor coming in and he said "I have good news and bad news. The good news is that everything is normal and the bad news is that everything is normal. We don't know what is causing this."
We now know what is causing this. It is post-viral syndrome. Also known as Long Covid or Long Haul Covid. In my case (and tens of thousands of others in Canada that we now know of) it presented as post viral Dysautonomia. Dysautonomia does not show up on the tests. It shows up as the debilitating symptoms that I was experiencing every single day. Post-viral syndrome is not new, nor is it exclusive to COVID. It becomes a problem now though because of the sheer amount of people being infected by COVID and the amount that will go on to develop post-viral syndrome and the demographic that it is affecting. So far, the estimate is that up to 1 in 3 people will have some form of post-viral syndrome, or long covid after COVID infection. It is presenting very much like Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The demographic for post-viral syndrome seems to be mostly women, between the ages of 25-45, in good health prior to infection, with initial COVID presentation being usually mild in nature.
I my case, I have experienced good health and never had a digestive issue in my life. Through two pregnancies, I never had a day of nausea or indigestion. My whole life, I have thankfully been able to eat and drink anything and everything I have ever wanted. We eat small farm organic foods only and have done so for over 15 years. I have a garden and grow things. Since last March, I have only been able to eat salad and meat. Anything else gives me bad acid reflux. At one point at the beginning, even water was difficult to drink because of the reflux. For someone who had never experienced this before, I can't tell you how hard it is to experience pain and discomfort with every single bite of food or sip of water, all day, every day, day in day out. After months of this, I would often cry after eating.
One night in particular stands out in my memory. It was about three months in. I had just been woken up from sleep by a racing heart and sweating. By this time I was afraid to fall asleep at night because of how scary it was to wake up like that and because it happened every single night. I was not eating because I couldn't. I was still nursing. I was exhausted to the core. I remember being on the couch (I slept, and still sleep on the couch now, because I could not lay flat on the bed anymore without acid coming up) and being thirsty. We have a Berkey water filter in the kitchen within view of our couch. I remember looking at the Berkey and bursting into tears because I was so tired, I did not know how I would gather the energy to get up and walk to the kitchen to get myself a glass of water. I cannot describe this level of fatigue to you. I could not have imagined it myself. Not even being an older mom to a new baby and young children comes close.
I can tell you many stories of young people I know, who are going through similar things right now.
It is over a year now and I am starting to feel better. A few months ago, the heart racing and sweating stopped and I am able to sleep again. I cannot tell you how relieved I feel. In the last month and a half, my energy has improved beyond words, my appetite has increased, I am still experiencing reflux but not as badly as before. I HAVE HOPE. I have joy. I have enormous gratitude.
I write this, and share my story, because I don't know what I would have done if I was a single parent, or had to work, or had a different family situation, or had a spouse that lost a job, or a business, or if I did not come from a family with a medical background and was able to advocate for and help myself, or in countless other situations.
I am home raising my children by choice. I have an extraordinary husband who has been working full time, taking care of our children before and after work and all of his lunch periods and free time, taking and picking up our little one from school, and cooking for us every single day, every single meal, for a year, because I just could not. This is the kind of dedication and care he has given our family. This is what has allowed me the rest required to recover.
Most people do not have this situation. People need help. People are having to sell their homes because they cannot work and they cannot get financial help. They are being misdiagnosed. They are trying to push through it only to have debilitating symptoms return from their exertion. The thing with this is that the only way through is rest and time. It can take anywhere from a few months to five years to recover from post-viral syndrome. What do you do if you cannot work because you literally cannot get up and Long-Covid is not an officially available diagnosis for any government aid or benefits. Where do you get help? How do you pay your bills? How do you keep your hope alive? Where do you go for rehabilitation? These are just some of the questions we need to answer.
What I wish to see first and foremost is an information campaign directed at the medical community regarding post-viral syndrome after COVID infection. They need to know what to look for and how to use existing protocols and best practices to advise, treat and follow people through to recovery. This for me is the fastest, easiest and least expensive way to help people through this, from a health standpoint. At this point, I do not expect Long Covid clinics to materialize in time here. At last count, the UK is up to 85 clinics specifically dedicated to treating people with post-viral syndrome after COVID infection. If we cannot go that centralized route, it is imperative that the medical community be informed of the most current and accurate protocols in treatment and that these be recognized and applied immediately.
Well, I think that is about it for now and I have come to the end of this story on this post. I will end it by saying this to you, the people you think are recovered, so many of them, are not as recovered as you think.
