Our stories are all too familiar. Nothing in my very active, creative, intellectually stimulating life is the same. As an ER nurse I was in the first of the front line workers-the first provider to encounter Covid patients. The first covid admission to my hospital was my patient-December 2019. I made it until November 2020 before I got it from being within 1 foot from continuous exposures for 12 hours. Only 1 month before vaccines came out.
I was the first "Long Covid" patient my doctor encountered, was in the first pulmonary, Physical, Occupational, Speech, Support Group therapy groups that were developed by my hospital system. I "look perfectly fine", my difficulties are "invisible'': No one can see the loss of balance when I walk and turn my head, the incapacitating-painful-overwhelming exhaustion because I'm not able to get off the couch let alone go anywhere when I feel that way, word finding and memory loss, if I sit still I can breath, my heart rate reaches 170 walking 10 feet, on and on and on.
It took 2.5-3 years to understand where my mental and physical limits are and then how to plan around them. I know I'm good for maybe the first 5-6 hours of the day, but only 1 hour at a time then resting. I lost my 40yr. career which I loved-I'm not capable of being on my feet and remember complicated and vital information, multitasking-forget it.
I went to covid support groups for about a year and it was so helpful. Now I see a therapist and my core issue is grief/loss-I lost everything that used to be my life, every adjective I could have described myself as. Depression is real, so is fear of the future because it is nothing like what I thought it would be. It took 10 days to recover from Christmas!
I continue on by pacing, pacing, pacing myself. Only one appointment or activity a day. Period. I just 'X' out two days a week to be very low key at home to recover from the other days. I plan down days before and after a big event to manage my energy. I know that lots of water, electrolyte replacement drinks, a little bland food helps the crash-does not eliminate them but sometimes reduces the intensity and duration. When I start to feel better the next day I need to still stay down and quiet and the second day I can usually go back to this new life-but very gently. That roller coaster of feel good-think I can do everything and make up for lost time-then crash again is horrific!
Lastly, I talk to others with sudden debilitating health events and their struggle/success in living life as a whole different person-people who have had strokes, severe car/motorcycle accidents, trauma, cancer. I found my sister in law understood that energy problem as the same as going through surgery and chemo.
This forum, talking to others who are in the same situation is a huge help.
Good luck to you