I got my first Covid infection in Dec 2020. So much background that I’m too tired to give. Since then I’ve had a few longer lasting episodes of paralysis (2 hours maybe), and some that I could feel coming on, and I rested and just stayed very still and quiet and it would go away in a little while. I had a bad episode at the end of June at an outdoor restaurant that was really humiliating, my friends pretty much had to carry me to the car.
I started taking the experimental drug therapy with maraviroc, and I started getting so much better. The week of August 28 I felt the best I’ve felt since I first got sick in 2020. It felt just like a miracle. Then I tested positive for Covid last Tuesday. At first I felt like a normal person with the flu. Yesterday I woke up and with my long Covid fatigue. Grief and despair and all of that stuff. Then, today (I’m staying at my sister’s and she’s only seen me a few times since I first got sick) I was dragging my self to the kitchen to get something to eat. I felt like I was racing against time because I knew I would crash soon. I finally sat down to eat, and it happened again, I could hardly lift my arms, I had to put my head on the table and my body wouldn’t function. I started sobbing because I couldn’t believe it was happening again. My sister heard me, came outside and had to - everything, I’m too tired to write it down - but she got oat milk for me to sip with a straw. She had to hold the cup. I was completely helpless and paralyzed. It lasted about 2 hours. I’m still very weak, but everything is working.
I got Covid again in 2022, and it was disastrous, I had to start healing all over again even though I was at about 80% of my precovid life. This January I had to stop teaching entirely (I was 1/2 time). Instead of holding steady, I got sicker and sicker and more disabled. Then my miracle treatment, and hope and joy, and now this. I’m terrified of what will happen now. That I may never get well.