Long-Haul COVID Made Me Feel Like I Lost My Mind — What Finally Helped
Living with long-haul COVID turned my world upside-down.
klyots / Shutterstock In June of 2020, after three scary months of increasing COVID cases, I noticed I couldn’t smell while driving my son back to college from Northern Virginia to North Dakota. Outside Duluth, I lost my sense of taste and once we arrived in Grand Forks, I couldn’t stay awake which I marked up to my thyroid medication.
At that point, loss of taste and smell hadn’t been added to the list of symptoms; we were looking for a cough, breathlessness, and fevers. I had none of those. But when I returned home, I developed breathlessness, so I scheduled a test and had to wait three days.
My oxygen levels were at 91, and the nurse testing me said to get a monitor for home and if I dropped below 90 to go to the hospital. I waited ten days for my results, and by then, my taste and smell had returned, and I felt better.
Over the next year, strange things began to happen. I gasped for air while climbing stairs, had crushing headaches, and most alarming, my life-long blood pressure of 110/68 jumped to 125/92 or higher even though I exercised 180 minutes a week on my Peloton (my doctor suggested it as a way to combat my breathlessness), did strength training, yoga, and Pilates, and walked 10,000 steps a day.
I should have been in the best shape of my life, but I felt like I was falling apart.
In December, on-again-off-again brain fog permanently took hold. Writing and editing became difficult because I couldn’t remember where I was in the text or concentrate, and some days, I spent an hour or more on one paragraph. I’d also start making dinner, forget I had food on the cooktop, and take my dog for a walk.
I grew increasingly frustrated with seemingly little tasks and struggled to follow conversations. My symptoms reminded me of my husband’s traumatic brain injury, but I hadn’t suffered a blow to the head.
Fast-forward to June of 2021, a year after my infection.
While walking my dog at 5:30 am, I experienced an uncomfortable pressure radiating from my mid-chest and through my back between my shoulder blades.
Nausea overwhelmed me, and I fell to my knees in front of my neighbor's house in a cold sweat. Somehow, I made it home, got a cool glass of water, and sat down. I felt fine shortly after.
But when I mentioned it to my trainer later that morning, she insisted I go to the hospital or at least make an appointment with a cardiologist. I felt silly going to the hospital since I now felt fine, so I scheduled an appointment and was seen the next day.
I knew something was wrong when the nurse frowned at the EKG machine, re-adjusted the patches on me, and left the room after frowning at the monitor again. The doctor came in to see me, asked a bunch of questions, and told me it appeared I had suffered a myocardial infraction of the left ventricle aka heart attack.
Everyone was stumped. My lab work showed normal cholesterol levels and normal ranges for everything else. I exercised regularly and ate well, and had no pre-existing conditions.
And yet my blood pressure had climbed steadily since having COVID.
The doctor put me through a battery of tests, and it wasn’t until I had two MRIs — one for my heart and one for my brain — that high levels of inflammation were found and determined to be the cause of my brain fog and possibly, the heart attack.
That’s when I first heard the term “Long-Haul COVID.” I went home and Googled everything I could, but few things turned up. I felt like I was losing my mind because no one knew how to treat me, if I’d get better, or if any of my issues were actually COVID related or even related to each other.
This past September, my husband sent me this article by T.J. Quinn on ESPN.com about his and Clemson football player Justin Foster’s experiences with long-haul COVID. I cried. Their stories had many similarities to mine, and it was a relief to know that I wasn’t the only one dealing with crazy side effects over a year later.
Having a better sense of what I was dealing with, I made an appointment with one of my doctors (I was under the care of many specialists at this point), and they decided to try an intense round of steroids like Quinn took to get my inflammation under control.
I was skeptical but had spent months feeling dumb, crazy, and lazy, and desperately wanted to feel better.
After my first dose, my brain fog lifted a little. By day 3, I felt almost normal. And by day 6, all traces of my brain fog had vanished. Unfortunately, my blood pressure remained high for me, and my doctor thinks it always will be borderline high now.
I wear a heart rate monitor every time I exercise now and am hyper-aware of chest tightness or dizziness.
My medical team closely watches my blood pressure, and I’m working with a neurologist to get the migraines under control. But generally, I feel good. Not as good as I did pre-COVID infection, but much better than I did six months ago.
Unlike so many others, I’m lucky to have medical insurance that covers my care, and I’m fortunate that my job as an author isn’t my family’s only or largest source of income. And every day, even though dealing with long-haul COVID is challenging, I’m thankful my outcome wasn’t fatal.
Mia’s memoir Always Yours, Bee, about her husband’s accident and her subsequent spiral into mental illness, was selected by BookBub as one of “15 Powerful Memoirs to Read in 2021.” She is also the author of the women’s fiction series, The Waterford Novels.