Setback
February 10, 2023
Two years ago this weekend, I went to the emergency room fearful I was dying. I had tested positive for COVID three weeks prior and wasn’t better. Plagued by shortness of breath and a pounding/racing heart, I thought for sure any moment I would either suffocate or have a heart attack. Test after test came back clear and I was released with a diagnosis of “post covid syndrome” and told to “rest as much as possible and expect three more weeks of ups and downs.” To this day, our lives are still dictated by my ups and downs.
In early December, we were thrilled my functioning was became more predictable and we could see some serious progress. I was set to decrease PT to once a week and joined the rec center to do my exercises on my own the other day. I was feeling more comfortable at school, relearning how to help students in the class I observed, communicating better, and making plans to add a second hour in a regular education math class. I made the trip to DeKalb with Liz driving to see Eleanor’s state cheer finals and celebrated Christmas parties with both sides of Mom and Dad’s families.
Unfortunately, ten days before Christmas, I was struck down by another COVID infection. While it was nowhere near as bad as the first bout, it was not a walk in the park. Since recovering from the acute phase, I am left with increased headaches, leg aches, and ringing in my ears, but worse, it has set back my cognitive and physical functioning. At PT, I restarted the Parkinson’s exercises and coordinated walking within the parallel bars and at school I delayed extending time. It’s been five weeks of grinding through therapy and hopefully in another month or so, I’ll get back to where I was in December.
For two years, I’ve worked at accepting over and over again that I can’t control my progress, I can’t “try harder” to make it go faster, and that no one knows what recovery truly looks like. I’ve worked at accepting over and over that I’m a Guinea pig for the medical community. My team of doctors continue to help me navigate the unknown, attempting to repurpose drugs to address my chronic symptoms including staying on the MS medication for fatigue and adding a low dose of naltrexone (LDN) to stimulate brain function. All doctors (neurologist, covid rehab, primary care, therapist) agreed it’s time to add a SSRI. After sliding down the mountain, climbing up again is daunting and I hope a little chemical boost will go a long way.
Having a sometimes invisible illness is extremely challenging because my struggle is not always outwardly apparent but your love, cheers, cards, smiles, and hugs make it all a little easier to manage. Here’s to hoping my next update is full of concerts, travel, beers, and a maybe even a book!
