Is This Long-Haul COVID Or Is This My Ankylosing Spondylitis?
I was diagnosed with COVID-19 a few months ago, at the end of March 2021. If it weren't tragic, it would be funny: I somehow managed to go an entire year of the pandemic without catching the virus, but ultimately, it got me.
I think a few things made me vulnerable: I moved houses about a week before I got diagnosed. I believe the stress of the move (which was something I felt extreme resistance over) did me in. My father also had a traumatizing surgery experience and that was weighing heavily on me.
Change — especially around home and sanctuary — is emotionally triggering for me. Let's be honest: Stability during a global pandemic cannot be underestimated. And so, all things considered, I will always look at March 2021 as a fated time. It was my personal time of darkness, the sort of time that knocks you down and keeps you there. Not only was the grief of the world blanketed over me, I felt a sort of anticipatory anxiety around my own mortality. Would I join the dead, I wondered? I'd read the stories. Some people take a turn, and there were nights when I thought I might.
I was frightened and vulnerable
And yet, I look upon it with a sense of survival, as though it gave me my phoenix feathers. I got very sick when I had COVID-19 (I had all the main symptoms, including a lost sense of smell and taste, as well as other neurological problems) — but I survived. I was frightened and vulnerable and very sick in a space that didn't feel like home, but I emerged stronger and more grounded. I went through one of the darkest periods of my adult life that month, but I gained perspective and gratitude.
Ever since recovering — I was allowed to leave my house April 7 (I didn't, although I could have), a day I won't ever forget — I've been keeping track of my health and my AS.
When I had COVID, my AS went away pretty much completely, as though my body dispatched all of its little self-fighting warriors to the virus itself. I was taking a lot of fever and pain reducers during COVID so perhaps this helped? (I was also not allowed to take biologics, FYI).
Then I felt my AS symptoms again
About 14 days after recovery, AS crept back in. I felt the neck pain, the hip pain, the back pain. One day I couldn't walk at all. While pain has been consistently creeping back, especially when I'm sedentary, it is not remarkably worse.
Other things have gotten worse, though: my fatigue and my brain fog. I've always had brain fog from AS, but this is different. It really feels as though my brain is changed. Altered. Different. I feel slower, less able to focus, confused, and sloppy. I get mixed up. I confuse memories and reality. I lose track of the origins of my thoughts. I mix up things I say out loud with things I think I've said (but haven't). I repeat myself.
Fatigue and brain fog abound
And I'm tired — a lot. I'm tired in new, strange ways.
I've resumed my good nutrition (with the exception of some very indulgent eating after I got my tastebuds back). I exercise nearly every day. And I've been managing my stress by going into nature. I also find that I need more silence or else my mind feels overwhelmed and oversaturated (something that was very overwhelming during COVID).
And so I find myself wondering: Is this some sort of long-haul COVID syndrome, or is this AS? Is it a combo of both? I can't tell if any of this is post-COVID or autoimmune, which is confusing. Because there are still so many unanswered questions around both COVID and immune-mediated diseases, I feel sort of like I'm stuck on a strange little island of unexplainable symptoms, all alone.
All I have on my side is my dedication to my good lifestyle habits, my gratitude for being alive after this ordeal, and my hope for some answers.
Have you had COVID? I'd love to hear your story in the comments below.
Do you use the word disability to describe your AS?