“This is my story. I was a person who loved life, people, reading, seeing new things, doing new things, crafting, crocheting, games, teaching, learning, spending time with my kids and grandkids, jokes, laughing, creating. Now I need help with so many things. My kids have set up most of my bills on autopay and if I get one that needs to be paid, sometimes I have to ask for help on how to do it. I can't make plans to do something ahead of time because I never know what I'll be able to do. Today I might be able to go to the park for a walk. Yesterday I could barely make it from the bed to the bathroom without severe sweating, weakness, increased heart rate, blood pressure, headache. Today I might be able to watch a movie on TV. Tomorrow I might have to lay still on the couch without lights or sounds. If I can get someone to drive me to a function (birthday party, graduation, etc.) I have to have a mechanism in place to leave if I "crash." Obvious signs are falling asleep or extreme agitation that makes me get out of my seat and pace, temperature changes, extreme headache, diarrhea. The guilt that comes from not participating is horrible. I have to have someone take notes when I go to the doctor. I have had to learn new systems to keep track of things. To do lists, grocery lists are written on large paper and taped to the wall. Meds have to be charted when I take them. There is a large chart on the mirror in the bathroom. If it's a bad week I'll be in bed or on the couch with a sore throat, earache, generalized muscle aches, headache, rapid temperature changes from sweating to freezing, It may be too difficult to bend over to put my socks on. If I can get in the shower and wash, I may have to lay on the floor wrapped in a towel or blanket until I have enough energy to get dressed. I "forgot" how to crochet, read, play piano, make stuff, fix stuff, cook, spell, write. I no longer keep a journal, keep up with friends and family, keep track of appointments. I get night sweats and then yeast infections in all the fat, sweaty parts of my body. I had to have oral surgery. It needed to be repeated because I got an infection. Then I got oral shingles. I have no energy to fight infection. Today I can feel how tired I am and don't expect much of myself. I'll eat some yogurt, drink some tea (double check that I've turned the burner off). I'll probably fall asleep on the couch. I do have a follow up appointment with my family practitioner as a follow-up to a recent hospitalization. I'll sleep after that. No one understands what this illness is. No one knows what causes it, or why there is such a wide range of symptoms and recovery for me, the last 21 months have been extremely difficult. Who has helped me on this journey? My family and friends who called daily to see if I was still alive. Once we thought it might be Covid, I became even more isolated. Thanks to those who dropped off Pedialyte and later more food that fit the diet I was able to eat. Some who came and wore their masks and gloves and helped with housework while I slept in the bedroom. The many people who kept track of my symptoms, reminded me what was going on, helped me figure out systems to keep track of things and who often kept their own checklist of my symptoms, reminded me to eat, bathe. Thanks to a couple of online support groups who helped me understand that I wasn't crazy and that there were others going through the same thing and much, much worse. My original neuropsychologist who did a second neuropsych eval (I already had a baseline test about a year prior) and shared that I had mild cognitive impairment with significant changes in language processing and higher-level thinking skills. He said this fit the profile of others he had treated who had a prolonged significant illness and/or extended time in ICU. My therapist who helped me remember to be compassionate to myself and not get angry with myself because of things I couldn't do, but rather find work arounds or decide what was really important to do. My sister who helped me get an apartment closer to decent medical services (as I sat crying in the car because I was sick and tired) and couldn't understand the lease terms and who also went to Florida when the Covid numbers were climbing to get the condo ready to sell since I was/am unable to travel. The amazing realtor who sold my condo and who went above and beyond to work with the condo association dealing with water damage and other issues that I couldn't understand. My kids, brothers, sisters, cousin who helped me understand that buying a property in Detroit that needed a lot of work was not feasible, no matter how beautiful the bones, and that I was unable to undertake such a project. Friends and family who helped me research senior living/assisted living, went over budget with me, explained options of home health care, went to doctors' appointments, asked questions, sought answers and comforted me when I felt I couldn't go on because living only a partial life sucks. The new neuropsychologist who did more testing and diagnosed more things and started me on some medications that helped me stay awake, and eventually helped some with cognitive function. Who also sends me lists of things to do after our monthly appointment. And my mom, for making me jello, Greek green beans, and anything else I asked for.” - COVID Long Hauler