My journey with long covid

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My journey with long covid

The first person to say “maybe it’s long covid” was either my husband or the first elder of my church. First elder is a term we use in our faith tradition to identify the person who leads our spiritual nurture team alongside the pastor. The pastor…that’s me. 

Our first elder has a way of telling me things I need to hear with love and grace and a touch of uncle/big brother. He doesn’t mince words. He often tells me I do too much. I often don’t know what he means.

Having long covid didn’t seem possible, so I thought, because my illness hadn’t been severe. Maybe the fatigue thing was because I was “doing too much”. Maybe the brain fog was because I wasn’t getting to bed at a decent hour. 

But the shortness of breath…I couldn’t figure that one out. It’s one thing to feel winded (as I used to call it so as to not make it sound so serious) after running or hauling a massive root out of the ground or in the midst of having COVID. (Do we capitalize the whole thing? Do we need to add “dash 19”? I’m so over it that I wish not to respect its written form.) When I was sick, I would walk from my bed to the living room (just outside my room) and back and feel as if I was up a mountain, unaccustomed to the gradually thinning air. It was different from the post-workout pant. It was accompanied by an absolute lack of energy. There was no pushing through, only returning to bed, curling up, and maybe playing a game of Sudoku on my phone if I had enough strength to hold the phone, that is.

This long covid shortness of breath comes when I’m doing nothing at all that should cause me to sit down ASAP. The last time it was most pronounced, I was standing on a chair in my closet with my arms up, rearranging some items on a shelf. I hadn’t been slogging away at this and I don’t think I’d been rearranging for even 30 minutes when all of a sudden, I didn’t have enough air. I stepped down and walked straight to my bed. I sat down, reached for the oximeter and confirmed what I’d been feeling. 

Pre-Covid I was always at 100% and as a lover of good grades, that made me stand tall with a slight smirk. Since Covid, I’ve been at 98-99%. That evening, I dipped to 94-95%. Sure, not ER worthy but definitely not the me I’ve known.

My primary care doctor wasn’t helpful. When I told my neighbor-friend who’s in healthcare about that appointment, she helped me quickly see that I needed more than what my doctor had given. Being the amazing Google-er that I am, I found a clinic that focuses on post covid patient care and made myself an appointment. In times like these, I’m glad my insurance doesn’t require a referral. #winning 

This latest appointment was a good first step in the right direction and it could be the first step of many or the first of a few—we’ll see. Covid’s still too young for doctors to have absolute clarity as to all the things a patient needs to do. Fatigue? Brain fog? Wait them out. Try some deep breathing exercises. Get as much rest as you can. History of blood clots? Let’s order a specific blood test that’ll tell us if you’ve been clotting. (Got it done the next day. All clear!)

The most intense part of my appointment was in the breathing department. A series of breathing tests taught me that I’ve basically never taken a deep breath in my entire life. These breaths were ocean depth breaths. Say that quickly. Turns out my lungs show no scarring but I will benefit from an inhaler for the out-of-breath moments that come, whenever they decide to come. 

Nothing’s regular. That’s part of the nuisance of this virus. The week I made that appointment, I was tired tired tired. During the two days prior to the appointment I had massive amounts of energy, energy I haven’t had in forever. The two or three nights before the appointment, I struggled to fall asleep and my left leg was restless (one of the most awful feelings). And I haven’t had what I’d consider a major breathless episode like the one I described above since mid February. 

I’m nowhere near a worst case scenario, but because I’m not the me I’ve known, I’m getting whatever help I can. And wearing one of my pairs of Converse to all future appointments will be my way of reminding myself that not everything is off-kilter.


Two post-covid resources that I’ve found helpful…

Survivorcorps.com “Post COVID Care Centers [PCCC] are opening across the country – bringing together multidisciplinary teams from across a broad range of specialties – to address the issues of COVID-19 recovery – with comprehensive and coordinated treatment pathways. See our dynamic map below for locations – both U.S. and international.”

What Doctors Wish Patients Knew about Long Covid

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