Pulmonary rehab did not work. I could go through the routine with good oxygen and HR but later that day or the next I would have a breathing episode. The following is an excerpt from my COVID journal which is now 37 pages long.
I don't look sick - bags under my eyes only occur when I push myself, so most people have a hard time knowing I'm sick. My husband is really the only one who understands my disability. Getting dressed, walking to the mailbox, taking a shower, climbing stairs, getting pans out of cupboards, doing laundry, walking from the car to a restaurant result in windedness and legs that feel like they're going to collapse - like I've run a marathon. If I push myself after becoming winded and do not rest, I end up with scary shortness of breath, blurry vision, dizziness, major brain fog, headaches, feel like my heart is racing but it's not. Pre-Covid, I participated in Aerobic dancing 3 days a week, walked 5-6 miles 2x per week, gardened for hours, played golf, and more. Now, I can't go to a big grocery store - too much effort. (I went once with my husband and he had to walk me to the car in the middle of shopping.)
You are the first person in all my research and doctor visits who has asked me to describe my "episodes". Thank you!!!
Incidentally, I am on a waiting list for the University of MI Post-Covid Clinic. I hope to get an appointment in May. No, I hope I do not have to go by May. Mayo is not taking new post-Covid patients either......long waiting list.
Lucy, I'm disappointed that lung rehab didn't work. You'd think it would help wouldn't you?
Post-COVID clinics everywhere are experiencing more demand than they can handle, this includes Mayo Clinic unfortunately. The magnitude of the population that needs help is mind boggling and the same experts are also caring for patients admitted with acute COVID as well.
I know it's a far second best, but I hope that the knowledge and experience members share here and on the expert blog (https://connect.mayoclinic.org/blog/post-covid-recovery/) will be a stop gap until people can get into a clinic.
Let's continue to share what helps. Your mention of "you don't look sick" and carefully managing the energy you do have reminded me of this discussion. I think it may have some ideas people with post-COVID syndrome will appreciate.
- How do you plan your day and conserve energy? Are you a Spoonie? https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/