6 Months of Long Covid With Ankylosing Spondylitis
Last updated: September 2023
In March 2021, a year after the pandemic began, I got COVID-19 I was a week away from my first COVID-19 vaccination, which felt like a cruel joke.
Nonetheless, I got COVID-19 and it hit me very hard. I was very sick for about eight days, but generally pretty sick for about 12. When I was finally able to feel some semblance of human —and cleared to leave my home — I thought the problems would start to subside. That first day out, I took a long walk as the sunset. It was early April, and a hint of spring bloomed in the sky. I felt hopeful. And I felt, without a doubt, grateful to be alive.
But that wasn't the end of it all
I had lingering shortness of breath for months, which was difficult for me as someone living in New York City. There are a lot of stairs here, and accessibility isn't great, even with elevators.
Even if I wasn’t experiencing an ankylosing spondylitis flare, which makes walking pretty difficult for me, I was experiencing breathing issues.
The brain fog was also debilitating
When I say debilitating, I mean life-changing. I mean: cell phone in the fridge, forgetting my own phone number, mixing up dreams and reality. AS already comes with a side helping of brain fog, but it got worse for me post COVID-19 infection. I could barely concentrate, focus, or find motivation.
It is as if I couldn't distinguish thoughts from memories from fragments of reality. Did I do that thing? Or did I think I had to do it? Or was I remembering that I remembered the thing?
It's as if I lived in a dream state—half on earth, half floating in outer space. I remembered nothing. I struggled to work or finish emails or even promote my own book. I had no drive; I was almost apathetic. The fatigue felt as though I were battling myself daily. Nothing felt good, nothing felt right, and I struggled just to get through my day. I found myself slipping, disinterested in all creative work, and disinterested in hanging out with anyone who wasn’t my immediate social group.
Lastly, COVID-19 brought on extreme fibromyalgia symptoms, like sensitivity to stimuli. Lights and sounds drove me over the edge.
A few months after having COVID-19, I had chronic bronchitis, for which I saw the doctor. They told me it was some combination of a poor immune system (thanks, AS) and post-Covid symptoms. I joined a long-haul group and realized that there were thousands of people just like me. Although that should’ve been comforting, it also made me feel overwhelmed.
As the year comes to a close, here's where I am at:
- I have noticed some of the symptoms back off just a bit. The brain fog and fatigue still exist, but they’re at lower levels.
- I do think that my breathing has changed for the long term, ever so slightly. I get short of breath much more easily now. When I get costochondritis, it's even more complicated.
- I am stuck with the sensitivity to stimuli, it seems. No change. No improvement. I just manage it better now.
- Because COVID-19 made me feel so tired for so long, I really struggled to move my body naturally this year. I've been forcing workouts, but the energy is low. Anytime I felt good, I would take advantage of it, and throw myself into long walks and hikes and workouts. Sometimes I would end up paying for those high-intensity sessions with hip and back pain. I had this feeling as though I had to cram everything in so I could experience life. It sucks when you want to go for moderation, but you also want to live your life.
In short, it's been quite the journey, but it's not fully behind me yet.
Did you have COVID-19? How did it impact you? Please share in the comment below.
Has changing your diet helped manage your pain and flares?