Long Covid: All the Doctors

In a survey of patients’ experience with Long Covid that I completed recently, one question was, describe your experience with medical professionals. 

By the way, without Catherine I’d have neither health insurance nor income, so I wouldn’t be seeing any doctors. Plus I’d be lost without her help making appointments, remembering details, and explaining things to doctors, not to mention grocery shopping and cooking and so much more.

By far the majority of the many medical professionals I’ve seen since I got Covid listened well, were thoughtful and kind, and knew enough about Long Covid (or learned) to understand what I’m going through.

My GP has been an absolute rock through all of this. She’s reading research, listening carefully to me, helping me get to appropriate specialists, and helping me understand some of the possible treatments. After covid, my asthma was no longer controlled by the medication I was taking. It was ameliorated, but I still had fairly substantial difficulty breathing, pretty much all the time. She suggested a different medication.

The insurance company: No. 

The occupational therapist listened when I said my eyes were messed up. She ran a bunch of physical tests, documented the kinds of problems I was experiencing, had me do exercises, and recommended a neuro optometrist. 

The neuro-optometrist prescribed fancy eyeglasses and assigned more and different eye exercises. He tells me my eye muscles are very strong now. Problem is, my brain still can’t correctly join the input from my two eyes. 

The neurologist tested for peripheral neuropathy and balance problems, and prescribed duloxetine. My balance is okay if I’m not too tired, and the neuropathy isn’t gone, but it’s not as bad. better. She reads articles I bring her. She listens carefully when I talk about anecdotal evidence from social media about low-dose naltrexone, nicotine patches, and a raft of other supplements, and tells me what she thinks.

Pulmonologist #1 said my lungs would get better soon, and recommended smell training. Many months later, I thought to look up smell training, and found that there was no evidence it helped with general brain recovery. I asked why she suggested smell training. She said to improve my sense of taste and smell. I told her my sense of smell wasn’t great, but no worse than before covid. “Oh.”

Pulmonologist #2, whom I saw many months later because #1 was out that day, listened to me when I said I still had difficulty breathing despite using a rescue inhaler several times a day, and changed my medication. Insurance company agreed, because specialist. It made a big difference.

Cardiologist said I just needed to get up off the couch and get some exercise. 

The psychiatric nurse practitioner reads research on what medications have given some people relief from cognitive symptoms of long covid. She recommends medications, talks me through alternatives, and works with me on trying to optimize dosage. They’ve knocked some of the sludge out of my brain. I have to be careful though, because thinking faster also tires me out faster.

The talk therapist helped me to find my way back to some level of hope and self-acceptance despite losing my job, my avocation, my energy, my mental acuity … all of this.

The physical therapist gave me exercises for balance and strength. She had me track heart rate, stop after every set, wait for it to go below 90. I had been in excellent condition prior to covid and my muscles were still strong, so the individual exercises seemed easy. My balance got better, except when I’m tired. But eventually, I realized that spending that much time on them, even though the individual activities felt easy, was actually contributing to fatigue. 

Everything I do is tiring. 

Eating, showering, getting dressed, fixing the simplest of meals. Organizing, remembering, and taking medications. Unloading the dishwasher is a heck of a lot of movement. Plus eye exercises smell training, and stretching before bed so I don’t wake up in pain. Plus I was trying to play the piano every day because that’s also supposed to be good for the brain. 

I finally realized it was just all too much.

I stopped smell training, after asking the doctor about it. I stopped worrying about doing the eye exercises all the time. I stopped all of the exercises except short walks and yoga, subscribed to Kindle Unlimited Limited, and spent more time reading mystery novels. I stopped worrying about doing all the exercises all the time and prioritized resting. With time, this is helping me feel very gradually less fatigued, at least some of the time. Sometimes I add some standing yoga poses.

Priority #1 is rest.

How much longer will it be like this? Who knows. I’m at maybe 35% of pre-covid normal. The stats on recovery aren’t great, after a year and a half, but I do keep getting very slightly better, and I keep hoping for a research breakthrough.

Long-term disability insurance company: We are ignoring everything your doctors said. You do not qualify for disability insurance.

The dogs are not medical professionals, but it’s hard to express how much better my life is with them in it.