I completely identify with this; Ive been Long Hauling over 3 years now. I now understand that I am grieving the loss of the life I not only had, but pictured for the future. Everything I knew my life to be is gone.
I don't tolerate physical and cognitive activity: I can't remember steps in problem solving or tolerate 8 hours of working on my feet as an ER RN-not only did I loose the 40-year career I loved, but I cant work 8 hours at anything which is a huge part of my identity. Lack of stamina prevents me from social events, especially after 5pm, gardening, running any distance, cognitively I cant multi-task well enough to drive safely with the radio on, grocery shop and cook or do laundry in the same day, travel alone.
This is very isolating. I was able to do a craft class once a week that ends at 3pm and can walk in my neighborhood for 20 minutes. I am off balance if I walk in a new place, but my brain doesn't have to work so hard when I am in familiar surroundings.
I plan no more that 2 easy things a day, no more that 2 hours of physical activity and less that 3 hours of cognitive brain work a day, and 'X' out 2 days a week that I don't plan anything to give myself some 'down' days to hold off that horrible post exertional crash; malaise is far to gentle of a word for feeling like I've been thrown off a cliff or hit by a truck.
Grief counseling is still a work in progress for me, I'm not anywhere near acceptance. I have a lot of anger under the surface and lash out at those I love which strains the relationships I do have. My best time of day is ~9am-2/3pm, that's when I plan my day. I don't talk on the phone after 5pm-I am more likely to be impatient. I nap when I need to. I was able to host Thanksgiving: dinner was at 2pm, I bought dessert and everyone else did the meal, set the table and cleaned up afterwards (I was the 'banquet hall' and everyone else were the caterers).
I am not the same person, Martha Stewart has left the building, sometimes I feel like just a shell of myself, other times I try to focus on what I CAN do-If I had had a bad stroke or been in a highway car crash I could be in worse shape. Right now I can live alone and independently in my own house, dress-bathe-feed myself, walk & talk. As an ER nurse, I've seen thousands who can't do that after a medical event, and I've seen many who have less ability than I and are happy.
The road is long and filled with potholes and construction, all I have to do is what is right in front of me, for today only.