I got really sick. And I mean REALLY sick. It lasted for weeks and weeks. I lost my sense of taste and smell...Fast forward a few months and I still wasn’t better.
"I have a PhD in medicine and work as a faculty member at the University of Regina. I do a lot of work around global health and have expertise in infectious diseases and pandemic management. In the fall of 2019, I was invited to a conference in India on how to make sure communities have the tools they need to stay healthy. In 2020, the focus of the meeting changed to COVID-19. At that point, it had only been reported in two countries and we thought it did not spread easily and that you had to have a high fever and cough to be sick or contagious. The meeting was small, maybe 23 people. We had doctors there who were sharing their stories about treating people with COVID-19. We sat, ate, talked, and laughed together.
A few days after the meeting ended, I got really sick. And I mean REALLY sick. It lasted for weeks and weeks. I lost my sense of taste and smell. My friends in India said I ‘looked like a tomato’ when I was eating spicy food but I couldn’t even taste the spice. I couldn’t smell anything. My breathing was horrible, disgusting stuff was coming out of both ends, I was extremely confused and couldn’t remember basic things like knowing the water bottle I was holding had water in it, but I didn’t have a really high fever so we didn’t know what was wrong with me. At that point, we really didn’t know what COVID-19 symptoms were. When I got home to Canada, I went to the doctor. She told me that maybe I should be admitted to the hospital but that my symptoms didn’t make a lot of sense and to come back for a follow-up in a few days. The next doctor at the follow up said the same thing; except that maybe sleeping in my own bed would be better but to have someone monitor me to ensure I was responsive (I had been slipping in and out of consciousness at this point). In 2023, a few years later, we now know it was a severe case of COVID-19 and that I should have been in hospital. I had my bloodwork sent to a lab in the USA to look for markers of COVID-19 and it came back positive.
Fast forward a few months in 2020 and I still wasn’t better. My breathing was still a mess, I had trouble remembering what I was doing, got tired going up and down the stairs, was not able to walk my dog (good thing he hates walks and only likes car rides), and my senses of taste and smell were still ‘off’. We didn’t have a name yet for what was going on. I was told maybe I was stressed and that I should talk to someone. FYI I’m so tired of being told that talking to someone will help my body, not that therapy is not important, but for long-COVID there are so many more things going on than stress and burnout.
And then, my best friend died of COVID-19. More and more people I knew started to die and I was told how lucky it was I lived in a city that had very few cases of COVID-19 and that I was lucky to be able to work from home.
Finally, around the 2-year mark in 2022, I started to feel a little better. I started to be able to get my steps up past 3,500 steps a day; I had more energy and even went for a few short bike rides and walks around Wascana Lake in Regina (about a 5 km walk). Then in June 2022, I got COVID-19 again and ended up at the hospital (again). I was told that my blood work was perfect except I did indeed, have COVID-19. I was told that my oxygen level was just shy of bad enough to be admitted. The infection cleared up, but my long COVID symptoms were right back to where I was the year before. In October 2022, I got COVID-19 for a third time. And I went further downhill. I don’t know why I seem to be more susceptible, but I am. At least at that point, we had a name for Long COVID, although we still don’t know what it is or how to treat it. I was sent for lung testing and diagnosed with asthma so now am on waitlists for multiple specialists for continuing dizziness and an ECG that shows heart damage.
In 2023, I joined a few online support groups. It’s good to see I’m not alone. I started Long COVID rehab and found out my Long COVID was worse than I thought. Rehab is on hold until I see a cardiologist.
I really hate my ‘new normal’. We are told to do self-care, that this will help us feel better. In my pre-COVID 19 life, self-care would involve bike rides, gardening, playing music, going out with friends or for long drives, none of which I can do now. My self-care would be calling close friends, two who died because of COVID-19. Because of my background in medicine, I can read journal articles and understand what I’m reading. I’m lucky that I understand the literature and research, although frustrated with the different ideas of what is going on (Inflammatory response? Mast cell response? Nerve damage? Something else?). It certainly is not “normal aging”, as I was recently told by a healthcare professional.
I have a new appreciation for people who live with chronic diseases, and I am so grateful for all of the people who are there trying to support people like me, who live every day with tangible reminders of the last few years and try to find ways to keep on going and hope that science catches up really soon so that we can have some real treatments that work."
