Anyone with LC 4 years

God is my keeper, too. Thank you so much. I copied this twice, once for the 'fridge and once for the bulletin board beside my desk. I added prayer and Bible study to item 3, and thanking God daily, and the people you love more often to item 6.

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

Lifestyle strategies to consider when it comes to managing (not curing) Post-COVID.

1. Meeting water needs everyday even when you’d rather drink something else. 9 cups (72 fl oz) women 13 cups (102 fl oz) men.

2. Eating foods rich in anti-oxidants, healthy fats, and fiber every 3-4 hrs. Consider buying from the deli of a health food store to avoid the fatigue associated with cooking. Consider ordering groceries online to be delivered if possible.

3. Taking 10 minutes each day to engage in a relaxing mind body practice (deep breathing, guided relaxations, being in nature, body scans).

4. Gentle stretching daily to support the aches and pains- especially when higher intensity exercise isn’t possible due to fatigue.

5. Aim for 7-9 hrs of sleep a night to support healing. Wake up at the same time everyday.

6. Develop a gratitude practice to help focus on the bright spots- even if it’s something like “I’m grateful to feel less anxious today”.

7. Lean on your support system- delegate when possible , call loved one for social connection when laying in bed, avoid temptation to isolate.

8. Re-frame what productivity looks like and practice self-compassion when your expectations don’t align with your reality (probably the hardest of all). Pace yourself, avoid over scheduling, and learn how to say no.

I’m writing this not as someone who does these things consistently. None of us are perfect nor will we have the capacity to be as disciplined as we’d like. Simply sharing evidence based healing strategies that can support an improved quality of life.

I hope at least one of these tips helps someone reading this. Sending lots of love and compassion.

I am very sorry for what you are going through. Everything you said resonated with me. I got Covid 3/20/2020 and was sick until July 2020. I had brain surgery and all kinds of medical problems I had never experienced before. When I got Covid, the doctors office didn’t want me to come into their office and I didn’t want to go to the ER bc of the # of deaths that were occurring. I rode it out at home alone & one night when I thought I wouldn’t see another day, I wrote down the passwords to all my important documents and who they should contact in the event I died overnight. I woke up the next day shocked that I was still alive. Everything hurt me from head to toes. I lost my smell and taste. My doctor wrote in my records “ presumed Covid” this prevented me from getting help. I had my own business and traveled all over the country prior to Covid. The part of my brain that was infected by covid is the executive functioning. I started writing backwards & couldn’t transpose numbers. I lost my organizational skills, fatigue set in, and I tried everything I could to get back to my business. When it finally occurred to me I couldn’t do my work anymore, I became depressed, scared, withdrawn, and I felt ashamed that I had become a figment of what I used to be. I’m a strong woman and always have been but I am struggling. Over the last almost 5 yrs, I e lost my house, business, and was forced to move out of California bc I had exhausted all my savings and assets. I was turned denied SSD bc they said simply “ you are not disabled”. You’re right about people making assumptions about us bc they don’t see a disability. My family and friends tell me I can do anything bc of the things I’ve achieved in my life. This has nothing to do with will power! We can’t physically do things we used to. They tell me there is nothing wrong with my brain bc I speak well. It seems like the world has forgotten us who were fortunate enough to survive, but have real problems. I wish everyone on this listserve a brighter day. I send you all love & light bc that’s what I have to offer 💔

Hi..we are all in this together..long Covid has forever changed my life.. and the lives of all of us reading these posts. most people do not understand this mysterious disease we live with on a daily basis...some friends have gone away, I guess those that have gone away don't get it, they don't know why we are too tired to go out or do phone calls. Sometimes we just cannot. A lot of
people do not think this disorder is real..we are crazy..we need to get on with it. When I wake up in the morning, I never know how my day will be and if I will be able to go to work so I can pay my bills. All the doctors want to do is throw another pill at me, which has more side effects for me to deal with. I am so glad we have this site to connect with all of you. Thanks for all your kindness , wisdom , and prayers. Hugs to all of you..

Your list is a concise summary of what I do for myself. Of course, 'life' happens and everything we try to do goes out the window, but on average this is what works. Thanks for bringing this to readers on this forum, I am sure it will help many! It's hard to do when in the 'feel good' part of the 'feel good-go out and do everything-crash-feel good again' rollercoaster. Remaining conscious of symptom management, pacing, delegating, enforcing rest periods for yourself is essential.

Most people just don’t understand. I’ve been told I need to accept aging! This is NOT aging! I try to remember people usually mean well, but sometimes it’s very hard.
Or they say they are tired too, but you know they are on their way to dinner and a movie. They just don’t understand what some of us are enduring.

I wish there was a term different from 'fatigue' to descibe this- this is NOT staying up too late watching Netflix fatigue! It is overwhelming, incapacitating, leaden exhaustion. People who were part of my before-covid life don't understand, much less simply accept, I have 4-6 hours in my day now, not the 12-14 I had living in BC, Before Covid, partly because I look & sound exactly like I did living in that old life.