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The year 2022 seemed to pass in a daze, shrouded in a fog that I just couldn’t shake. Sure, the last few years have been like this for many people with the changes that have happened in society and in our personal lives due to the pandemic. But something about this felt different to me, and I wasn’t sure what.
All year I’d been experiencing worse symptoms than usual. While my diagnoses of ankylosing spondylitis (AS) and fibromyalgia both cause me to experience a lot of fatigue, I was going through repeated long bouts where I’d be sleeping for 10 to 12 hours at night and napping for four hours in the day — and still feeling tired for a good portion of the rest of the day.
I increased my vitamins, talked to my primary care doctor, and tried improving my sleep hygiene. But no matter what, it seemed that these prolonged episodes of extreme fatigue kept happening.
My rheumatologist didn’t know what to do about my fatigue either. Meanwhile, I was also experiencing an increase in pain: more of my joints hurt, and more often. I was even beginning to have troubles even doing things like walking to the bathroom, so my doctor increased the medications I take for AS.
I also noticed that I’d sit down to work on an essay or write a poem — both things that I’ve been doing for many years — and no words would come. It was as if the words were floating around in my brain; I was grasping for them but was unable to grab hold of any of them. I chalked this up to brain fog, which I often experience with AS and fibromyalgia as well as right before a migraine. But why, I wondered, was my brain fog so much worse? Instead of it being bad, occasionally, it seemed bad all the time.
It wasn’t until I got close to the end of the year, and I opened my reading progress tracking app, that I really realized the severity of my brain fog. In 2022, for the first time in many years, I hadn’t met my reading goal. That may not seem like a big deal to most people, but I was an English major in college, spent a number of years teaching middle school and high school English, and I’m an avid reader.
In 2022, however, I struggled most every time I picked up a book. Every time I tried to read, I’d have trouble concentrating or stare at the page without reading it. I found myself re-reading the same sentence multiple times. I used to get sucked into books – so much so that the real world seems to slow to a halt.
Receiving a Diagnosis
Luckily around the time I realized the significance of my brain fog, I had a neurology appointment coming up. As soon as I began telling my neurologist about my brain fog and my fatigue, he asked if I had had COVID. I had, in fact. I’d contracted COVID on December 23, 2021, and experienced symptoms of an active infection into mid-January. I paused as all the things I’d experienced over the last year started running through my mind.
My neurologist began rattling off questions:
- Had I had any heart issues? Yes; I’d seen my primary care doctor about it because my heart rate significantly increased when I did simple things like wash the dishes or walk to the bathroom. I’d simply been referred for testing.
- Had I experienced issues with sleeping? Yes; despite the severe fatigue I was having, I also was struggling to fall asleep at night, having to use melatonin and other aids after years of not needing them.
- Did I experience increased depression (yes) or unexplained rashes (yes).
- Had I been experiencing any sweating or overheating? Yes; just a few days prior I recalled standing outside in a tank top and sweating profusely while all my friends shivered in coats and hoodies.
While symptoms like increased heart rate had significantly improved after about four months post-COVID, things like the fatigue, brain fog, and sweating had not.
“Unfortunately,” my neurologist said, “it seems you’re having all the symptoms we associate with long-COVID. According to the World Health Organization, long-COVID is when you still have COVID-related symptoms three or more months post-active infection.
My neurologist explained to me that there is no test for it, and that the medications I’m already on for AS and fibromyalgia are the same types he’d prescribe for managing long-COVID symptoms. There’s still a lot that is unknown about long-COVID.
Dealing with the News
I got off the phone with my neurologist and texted my parents and a few friends. “How are you feeling?” one of my friends asked me, and honestly, I wasn’t feeling much. As anyone who has lived with chronic illness for a while (especially a progressive disease such as AS) knows, new symptoms and worsening symptoms are something you begin to get used to.
I no longer take for granted the way my body is behaving today, as I know that I very easily could wake up tomorrow and have it acting differently. So, if anything, I felt a bit resigned. I knew this drill. Granted, this time it was a different thing causing my uptick in symptoms, but in the end, it boiled down to the same thing: new symptoms that I was going to have to figure out how to work around.
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