Living with Long Covid
I work in patient/client centred care. I work with people to find ways that they can advocate for themselves and the people they love and care about. I work to understand how our healthcare system can do better. I hate being the patient in the middle of the chaos of lack of resources. I hate being the patient who isn't being heard.
I went to India at the end of January 2020. I have a PhD in medicine, I work as a faculty member at the University of Regina. I do a lot of work around global health and have an expertise in infectious diseases and pandemic management. In the fall of 2019, I was invited to a conference about how we can make sure communities have the tools they need to stay healthy. In 2020 they changed the focus of the meeting to be about COVID-19. COVID-19 was brand new. We thought it did not spread easily. We thought you had to have a high fever and a cough at the same time to be sick or contagious. It had only been reported in 2 countries at this point in time. The meeting was small. Maybe 23 people. We talked about COVID-19. We had doctors there who were sharing their stories about treating people with COVID-19. We sat together, ate together, talked together and laughed together.
And then, 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 (I worked in India for a while when I was younger) 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 (not even the BO from teenagers after they finished playing sports when we were visiting after a game). My breathing was horrible, disgusting stuff was coming out of both ends, I was extremely confused and couldn’t remember basic things, but I didn’t have a really high fever so we didn’t know what was wrong with me- at this point we really didn’t know what COVID-19 symptoms were. I was told by an MD in Canada that maybe I should be admitted to the hospital but that my symptoms didn’t make a lot of sense and that maybe sleeping in my own bed would be better but to make sure I was monitored to see if I was responsive (I had been slipping in and out of consciousness at this point). We now know it was a severe case of COVID-19 - 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 and I still wasn’t better. My breathing was still a mess, I had trouble remembering what I was doing, I got tired going up and down the stairs and no longer was able to walk my dog (good thing he hates walks and only likes car rides), my sense 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 and 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 in 2022 I started to feel a little better. This was around 24 month mark. I started to be able to get my steps up past 3,500 steps a day, I started to have more energy and even went for a few short bike-rides and walks around Waskana 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 absolutely perfect for everything except I did, indeed, have COVID-19. I was told that my oxygen level was just shy of bad enough to be admitted. And the infection cleared up but my long COVID symptoms were right back to where I was a year before. And then in October 2022 I got COVID-19 for a third time. I don’t know why I seem to be more susceptible to COVID-19, but I am. And I went downhill. At least at this 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. The ECG showed up with indicators of a heart attack, likely related to my lung issues.
Most recently I was told that the inhaler that seems to be working for me is not covered by the province as a treatment for COPD unless you have tried other inhalers first- however I don't have COPD. I wonder if the first two letters in COVID triggered an issue with the computer system and I've been misclassified.