I've been considering a c-19 follow up post for a while. Around the end of May I felt my consciousness start to kick in again, at that point it had been around 70 days. June was spent coming to terms with the world around me, what had happened and how to best cope with something that would probably be ongoing for a while to come. My life now is planning every day to compensate for my new level of health, both physically and mentally.
One of the most important things to present itself to me over the past few weeks (and pushed me to finally write) was I am not alone. Maybe the world wasn't aware of the post covid complications, maybe WHO kept it quiet to avoid more panic, maybe focussing on the current, still very dangerous situation, we find ourselves all in is more the priority (btw it is, wear a mask). But covid is not a two week illness like the flu. Sure everybody's experience with it is somewhat unique, but the growing number of people that are just not well after having it is finally being exposed. They call it long-tail covid, when you're not infectious anymore, but are still undergoing a plethora of health related issues, which last for months.
I personally thought my ongoing post experience of organs not feeling quite right and severe lack of energy could have been related to something underlying which explained why I had it so bad to start with. I experienced brain fog regularly because of my migraines so assumed I was getting auras in my sleep again. I can feel my heavy lungs when I breath, I can't digest food and my heart has weird sporadic episodes of not pumping, or pumping hard.
I didn't talk about it to a great number of people, those around me were so grateful I was ok, I was grateful for that and grateful I was ok, my GP was grateful I was ok, but a quick mention in a slack channel gave me a link to a great twitter thread (thank you Kelly!) which then fortunately opened a world I didn't realise I needed.
Here's that thread:
Hey, so, I got #Covid19 in March. I’ve been sick for over 3 months w/ severe respiratory, cardiovascular & neurological symptoms. I still have a fever. I’ve been incapacitated for nearly a season of my life. It's not enough to not die. You don’t want to live thru this, either. 1/— Dani Oliver (@DaniOliver) July 3, 2020
From this I found some other useful articles. By now everyone knows someone who has been affected by this in one way or another. If you, or someone you know, has had covid and is struggling, you/they are not alone. Maybe you need this to explain to your doctor, employer, close ones. This is all new to all of us and they won't know yet. People struggle to believe you've even had it, our hypernormalised world means if they don't read it on a screen and it doesn't confirm their bias "it's just not real". So here is the screen:
- A brilliant (short) podcast interviewing a Guardian journalist who explains the experience extremely well
- An early article from the Professor at the Liverpool School of Tropical Medicine
- An article from The Atlantic
- An article from the BBC
- A first hand account from the Guardian
[23.09.20] EDIT: A couple more useful links
- Body Politic - an online support group
- Citizen Scientists Take on the Challenge of Long-Haul COVID-19
I'm personally positive about the future, at the moment now one knows what the long term side affects are. Yeh it sucked to be so ill and it continues to suck, but if I think about how it's better than a month ago, and a month before that surely that's a good thing 🙏.