Just one person’s experience with COVID-19 …
Like many, I’ve had a hard time this year when people ask, “How are you doing?” Nobody is really thriving in 2020, so it’s kind of an awkward question in the first place. And for me, the answer gets a little more complicated.
I hate to complain, so I usually say something like, “Doing as well as any of us can right now!” It’s an honest answer, even if it leaves out plenty of holes.
The reality: I got sick in March.
I got better, kind of.
But I’m still not recovered.
It started with a headache. Then a sore throat. Just a typical cold. COVID was a confusing phrase back then — 8,000 years ago in March — so it couldn’t be that. I got a mild fever but then felt better just a few days later. It must have just been a bug, thank goodness!
Three days later, and boy, was I wrong.
I suddenly had no energy, and simple tasks like walking the dogs were a chore. I had a hard time getting a full breath, even just walking to the car. It felt like someone was squeezing my chest nonstop from the inside. My body would flip from overheating and sweating to chills in an instant.
I lost my appetite and had some weird sensations I can’t explain. It often felt like my nose was running, but there was nothing there every time I’d check with a tissue. Strange, spooky stuff.
Just one week prior, I was running around playing soccer and doing circuit-training workouts. Here I was feeling like it was a chore to go from one end of the house to another.
I cried once during the worst week for what probably sounds like a stupid reason. My feet had developed these bright red bumps, and they itched and burned more than I can possibly describe. The feeling was unbearable, and no cream or lotion calmed things down. I wish I could properly describe this annoying sensation. Fortunately, this madness went away after a week. Still, I want to rip my hair out thinking about it.
(I later read that others reported similar symptoms, with some calling this “COVID toes.” Who knew!?)
My partner also got sick at the same time, and when he had a weird feeling in his side and arms — kind of mimicking a heart attack — we called our nurse hotline. They told us to go to the ER.
By that time, our fevers broke. I was down to 99.5 degrees. While our vitals and oxygen levels looked good, my partner’s x-ray showed he had pneumonia. Despite that, we couldn’t get a COVID-19 test. There were so few at the time — and those were reserved (rightfully so) for frontline workers or patients that had to be admitted.
The doctor assumed we had it and told us to assume the same.
We were sent home where we isolated, had lots of soup and tea, and slowly improved. After about a month, I started to feel “better.” I could say more than a few sentences on work calls without getting winded!
But I still don’t feel like the same person I was before.
For months, I struggled to keep my hands and feet warm, even during the summer. And while it was harder to do physical things, I figured recovery might take a while.
For a few months, my heart would randomly start to flutter and speed up — especially when I stood up. My hair began to fall out in bunches (luckily, as anyone who has cut my hair can attest, I have plenty to go around).
Today, nine months later, I still have trouble sleeping. I wake up sweating inexplicably in the early morning and can’t fall back asleep. I feel exhausted in a way that I cannot explain. Not tired — although I am from the whole sleep thing — but like my body would prefer to simply never move again.
Every time I try to exercise or do something with a little more physical exertion, I get this constant pain in my left chest. It dissipates if I rest for a few days, but then I feel more and more like a blob.
Getting answers has been a struggle.
My first two doctor appointments were virtual, with dropped calls and microphone issues each time (hello, pandemic, please close the door on your way out). The first doctor ordered me to get a blood test and EKG. Both looked normal, which was reassuring.
The second put me on an inhaler, thinking I may have developed viral-induced asthma. I never felt like the pain was in my lungs, but I’m not a doctor, so I also got on the list for a lung function test at the recommendation of that second doctor. I had to wait nearly two months to get the test, even in a state like Oregon that’s not overloaded with COVID-19 patients. (Just another example of how this is about a lot more than ICU beds and deaths. It taxes our entire system.)
My lungs looked normal. I kept puffing the inhaler in the meantime to see if things improved. They didn’t, so I scheduled my first in-person visit. I was mostly worried about that feeling in my chest. It was right where my heart sits, so you can imagine where the mind takes you — especially when friends and family (bless their hearts) keep sending you articles about heart issues in COVID patients.
I wanted some answers, or at least a direction to pursue.
After talking about my symptoms, the doctor dug into where I felt the pain and gave me a new diagnosis: costochondritis. Another thing I’d never heard before! A short primer: “Costochondritis is an inflammation of the cartilage that connects a rib to the breastbone. Pain caused by costochondritis might mimic that of a heart attack or other heart conditions.”
Oh! That would explain a lot …
It’s certainly nice to have some clarity, although the doctor said this didn’t explain the fatigue and sleep issues. That feels more connected to an autoimmune disorder, which is something health experts are now discovering in people who had coronavirus. So, this is where I’m at today: scheduling another appointment to get my blood tested for autoimmune markers.
A few weeks ago, after feeling like it was safe to do so, I went for my first run since getting sick. I felt so free in the moment and even managed to get a few miles in. The next day, the chest pain returned — frustrating, but also an inevitable part of my new normal.
And that’s what I’m left asking as this year ends: is this my new normal? If so, I can accept it. I mean, if Michelle Freaking Akers can dominate the World Cup and Olympics with chronic fatigue syndrome, I’ve got this.
It’s been frustrating, but others have had it much, much worse.
I’m sharing my story because it’s important for people to understand what can happen to any of us, even those who survive or aren’t hospitalized. I know people who aren’t taking this seriously, and it pains me to see them on my social feed. The damage that could be done to your life and your loved ones is just not worth it. I am 37 years old and had no underlying conditions when I got sick. I might have developed a new one, however, because of COVID-19.
I hope others can avoid my uncertain fate and stay healthy. Here’s to a much better 2021 — as long as we keep doing what we need to keep each other safe.
❤
July 2021 Update:
Since I wrote this piece at the end of 2020, my symptoms have continued — and seem to have gotten worse in the summer months. After a few additional tests, and recommendations from a Long COVID team at Kaiser, I’ve officially received two more diagnoses:
- POTS — also known as Postural orthostatic tachycardia syndrome — a disorder in which most of your blood stays in your lower body when you stand up, and in response, your heart rate jumps. (Turns out, people with POTS often feel worse in the heat!)
- Orthostatic hypertension, where your blood pressure increases when you stand.
I’m still receiving a few more blood tests — my fourth this year — to look at my adrenal glands. This could be related to my orthostatic hypertension, actually. My first adrenal gland test came back inconclusive, so I now have to have a more extensive one, as COVID-19 survivors have been found to have adrenal issues. This virus attacks every part of your body, apparently!
At the end of the day, I’m grateful to be closer and closer to an official diagnosis. It gives me tangible things I can do to try to get better. But I don’t wish these struggles on anyone. If you haven’t, I encourage people to get vaccinated so that their response to COVID-19 — if they’re exposed to the virus — is minimal. It’ll be worth it. I promise!
