I'm never going to recover from long COVID

Using anger to fuel actions of compassion and education

Last week I was certain I would have to stop writing this newsletter as my brain function was so low. My cat, Seffi, has been loving the warmer weather and asks to go out multiple times per day. I’ve enjoyed going out with her so much. The sun and fresh air feels so good, and it’s lovely seeing the world through her eyes. But, my POTS became worse in February, likely due to an infection, and my heart rate was spiking so much. It was regularly in the 130s while standing and slowly walking with her. It would go up to the 180s when walking through the snow. I was close to fainting multiple times per day and had worsening brain fog and fatigue. I more or less could just play simple games on my phone all day. I haven’t cooked or baked in weeks and I’ve been pretty miserable.

Seffi enjoying the scents of spring.

I’m back this week because I started taking a new medication that has been working well for my heart. It’s actually a medication I tried two years ago, but at that time it gave me severe acid reflux and I had to stop taking it. But now that I’m taking a different medication that has helped control my mast cells, I thought I should try the beta blocker again. Yes, it was my idea, not my doctor’s. When dealing with chronic illnesses, it is common to know more than your doctor. Anyway, my heart rate mostly stays around 100 beats per minute when I stand now, which is still higher than ideal, but is something I can enjoy life with. My brain can think better with my POTS under control. I’m grateful I figured out this puzzle.

But overall, I’m feeling pretty devastated. I can’t trust my dad to try to keep me safe from infections anymore, which means the odds of me ever recovering is approaching zero. I have caught three infections since getting long COVID, and each one has set back my health significantly. I hate that most people have decided to give up on precautions. I hate that I do as much as I can to improve my situation, but it ends up not mattering because my home is not safe for me. I hate that my parents are pressured by friends and family - who claim to love me! - not to continue wearing masks to protect my health, but to dine in restaurants and live in an alternate reality. I hate that we’ve been conditioned to believe that we are helpless in the face of viruses and just have to live with them.

When it comes to this anger and hate that I have, what can I do? It exists because I love myself and I know I deserve a chance to live my life in safety. We all deserve to live lives where viral illnesses aren’t an annual inevitability. We deserve buildings that are equipped with HVAC systems that swiftly remove pathogens from the air. We deserve politicians and public health agencies that loudly and accurately communicate research, even when it indicates governments and corporations need to spend money to protect us from airborne pathogens. I know we all, including me, deserve the dignity of a good life, regardless of our productivity. It makes me so angry to know that as a society, we don’t believe, or act on our beliefs, that any of the above is true.

I’ve seen people, who are up to date on the American political news saying that they feel like crazy conspiracists when they try to explain what’s happening to people who are not paying attention to the fact that Trump is now a dictator, as he refuses court orders that try to force him to act within the law. People who pay attention to COVID research feel the same way! We sound like conspiracy theorists, because it seems impossible to believe that governments around the world know that COVID is disabling people at an unsustainable rate and are choosing to ignore the research. It seems impossible to believe that governments removed mask requirements and decided to rely on a vaccine only strategy because they thought it would make them popular and re-electable, even though that wasn’t the best decision for our health and safety. If you care to look, the research overwhelmingly indicates we should still be acting like we’re in the pandemic we are still in, as frustrating as that is. But I understand how challenging it is to 1) believe that I know better than what you’ve been told by politicians and most news reports, and 2) change your behaviour to protect both yourself and others. Most people are exhausted from the chaos of the world, and who has the energy to confront the possibility that you’ve been lied to? I am very angry at everyone who doesn’t, but I understand why you won’t at this time.

My angry part wishes I could change minds on a massive scale. When I was a kid, I was inspired to make a difference like Terry Fox. For non-Canadians who might not know about him, Terry Fox was a young man who developed bone cancer in his leg, requiring amputation. After his surgery, he wanted to raise money for cancer research, and in 1980 he began his Marathon of Hope, running a marathon every day across Canada. He did this for 143 days, until cancer spread to his lungs. He wasn’t able to finish his Marathon of Hope, but he inspired a nation and asked us to finish it for him. Communities across Canada host Terry Fox runs in September to raise money to this day. He’s iconic in Canada, and little Kate wanted to become iconic like him and also help end a disease.

If I’m honest, I would still love to make an impact like that. I’m writing a book about an alternate reality where I do influence the world to clean the air and get rid of SARS and influenza viruses for good¹, so maybe that will be my Terry Fox moment (as long as I have enough days without debilitating brain fog to finish it). Mostly though, I’ve moved on from valuing that kind of iconic impact. Small actions are just as important, even when they don’t get any fanfare. Maybe even more important, because we can all take small actions every day. So, I will use my anger to fuel actions of education and compassion for myself and others. I will continue to remind people that it is best to avoid viruses and work to eradicate them. I will keep writing about our need to clean indoor air and protect ourselves. I will persist in my goal to remind everyone that we inherently deserve respect, dignity, and inclusion; we don’t need to prove we’re worthy. I don’t know if I will live long enough to see the public health changes we need for a healthy future, but at least I can advocate for it for future generations.

1. We eliminated one strain of flu in 2020, so this is a realistic dream!