1. < Post-COVID Recovery & COVID-19

Anyone have long term recovery?

Posted by Laura Dropps @ldropps, Feb 25, 2023

I was positive for Covid for the first time in November 2020. It's been a rollercoaster ride and I believe I'm as well as I've been since then. I am not where I want to be, however and not where I thought I'd be after going to the Mayo. I wish I could even talk to a nurse or my doctor, but I was told I'd have to start at the beginning at the Mayo. So I have an appointment in May with a rheumatologist here at home. Hopefully, something will come of that. Has anyone had close to a full recovery?

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silverfish0409 | @silverfish0409 | Mar 2, 2023
In reply to @rinadbq "I also had COVID in November 2020, before vaccines. I seem to have plateaued in my..." + (show)
@rinadbq

I also had COVID in November 2020, before vaccines. I seem to have plateaued in my recovery. I am nothing near the runner, marathoner, weight lifter, gardener, 'Martha Stewart' hostess, voracious reader or ER Nurse in a trauma center that I was a week before becoming ill.
I am not improving, BUT I am better at managing, planning, pacing my days and activities to stay within the limits of my tolerance. Of course, life happens and there are days that will stretch my limits and I pay for it with that horrific Post Exertional Malaise crash. If I know about an event that will exceed my limits ahead of time I can plan to do nothing the day before and the day after. I figure out travel to an event a week ahead (a true cognitive challenge), plan what to wear and bring with me 3 days ahead, shower and wash/dry/style my hair the day before and take a sleep aid the night before. I don't make plans after 2pm and limit appointments/errands to one a day. I walk slow, take the elevator, use handicap parking to avoid shortness of breath, coughing and racing heart rate. I order groceries on line and have them delivered. My meals are very simple, fast and I cook extra to have leftovers for a couple days.
Prioritizing, planning, pacing and acceptance of the 'new me' has made the biggest difference in recovery. As I said, I am not back to what I was but, with PT/OT/Speech I have learned to recognize my limits and live within them as best I can. I know I will not get everything back in my life but need to remember I am 63 and able to live alone in a two story home and take care of my own needs independently which I am grateful for; over 6 million people didn't make it through this pandemic. I am just do the best I can today.

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I also had the original covid. Two vaccines and then caught omnicron.I am 65 now I am diabetic I have been living with cfs since 1996 I had neurological problems before all this covid crap ,after the original covid I never felt well Gi problems constipation I have lost all train of thought my diabetes has gotten worse, my neurological problems have gotten worse,my taste and smell have gotten worse I get constant mucus in the back of my throat, seem to be yeasty comes and goes,can't work out much anymore.

REPLY
babsg1 | @babsg1 | Mar 3, 2023
In reply to @rinadbq "I also had COVID in November 2020, before vaccines. I seem to have plateaued in my..." + (show)
@rinadbq

I also had COVID in November 2020, before vaccines. I seem to have plateaued in my recovery. I am nothing near the runner, marathoner, weight lifter, gardener, 'Martha Stewart' hostess, voracious reader or ER Nurse in a trauma center that I was a week before becoming ill.
I am not improving, BUT I am better at managing, planning, pacing my days and activities to stay within the limits of my tolerance. Of course, life happens and there are days that will stretch my limits and I pay for it with that horrific Post Exertional Malaise crash. If I know about an event that will exceed my limits ahead of time I can plan to do nothing the day before and the day after. I figure out travel to an event a week ahead (a true cognitive challenge), plan what to wear and bring with me 3 days ahead, shower and wash/dry/style my hair the day before and take a sleep aid the night before. I don't make plans after 2pm and limit appointments/errands to one a day. I walk slow, take the elevator, use handicap parking to avoid shortness of breath, coughing and racing heart rate. I order groceries on line and have them delivered. My meals are very simple, fast and I cook extra to have leftovers for a couple days.
Prioritizing, planning, pacing and acceptance of the 'new me' has made the biggest difference in recovery. As I said, I am not back to what I was but, with PT/OT/Speech I have learned to recognize my limits and live within them as best I can. I know I will not get everything back in my life but need to remember I am 63 and able to live alone in a two story home and take care of my own needs independently which I am grateful for; over 6 million people didn't make it through this pandemic. I am just do the best I can today.

Jump to this post

Thank you for your hopeful words. I had Covid in Oct. 2021. Hospitalized, went home with 02 and thought: "ok I am home and I will be back to normal in a week." This is March 2023 and guess it's been 1 long week. I had been a runner and marathoner before I injured my back. I found new ways to stay fit at the YMCA, yoga, pilaties, weights, some low energy cardio classes. plus I have 2 wonderful small older dogs who love to walk. I no longer can do any of these things. I don't feel like myself and haven't since I contacted Covid. Fatigue, malaise, fog brain and other less annoying things. The fatigue and malaise are the worst for me. My PCP doesn't think there is long Covid and will not talk about it. I made appoint with another MD at the clinic and he told me the medicines I was taking were causing the fatigue.
I am in the process of changing PCP clinic. I am so grateful that I survived Covid. Many of the patients in the Covid ICU died before my discharge. I am trying to figure out how to live my life with no energy. All this time with hardly any energy. For example, I have gotten to a place in my life where I can meet a dear friend for coffee. After that I have to return home and take a very long nap. If I try to shop for groceries I have to ask my daughter for help taking groceries out of the car and into the house. I have so much fatigue and muscle ache.
Just recently I walked my dogs a block and a half. They were so excited to go out with me. Before Covid I was energetic, went to YMCA 5 days a week, gardened and worked on the grass, saw my friends. Did so many activities. Yes, I am 75 yet I look a young 60 and feel an old 90. I believe I will get better yet when? It is difficult to accept that I may never be and feel how I did before Covid. I did have the first 2 Covid vaccines before coming down with Covid. Now I am learning to try to pace mayself and accept my limits. Depression has been a problem for me since Covid. Most days I am not sure who I am anymore. I am happy for the individuals who have found hope and are moving on in their recovery. Maybe I am slowly moving on in recovery too yet cannot seem to recognize it?

REPLY
3 replies
kentkemmerling1949 | @kentkemmerling1949 | Mar 3, 2023

I had COVID 2 months before the vaccine was available and have not been able to walk well since. My balance is terrible and I feel dizzy often. Does anyone else experience this? Also, I was the president of a couple organizations and now am just not able to organize my thoughts well enough to maintain my position. Maybe it is brain fog? Not really sure what brain fog is... can anyone describe what they experience when they say they have brain fog?

REPLY
4 replies
ephrum | @ephrum | Mar 3, 2023

This chat room is both encouraging and depressing. It is comforting to know others are getting no help from the medical professionals and suffering the same symptoms I have. At six months out, it is discouraging to see people enduring this illness for much longer. I, too, am learning to accept my limitations and work within those limits. But losing so much at 85 is sure hard to take. I engaged in group exercise 5 days a week before this hit. That provided me with so much physically, mentally, emotionally and socially. All that is gone. But I am thankful my husband and grown children are so understanding and supportive. And we are still in our home and mostly independent. Thanks to all who share their journey. May God hear our prayers.

REPLY
1 reply
law59 | @law59 | Mar 3, 2023
In reply to @babsg1 "Thank you for your hopeful words. I had Covid in Oct. 2021. Hospitalized, went home with..." + (show)
@babsg1

Thank you for your hopeful words. I had Covid in Oct. 2021. Hospitalized, went home with 02 and thought: "ok I am home and I will be back to normal in a week." This is March 2023 and guess it's been 1 long week. I had been a runner and marathoner before I injured my back. I found new ways to stay fit at the YMCA, yoga, pilaties, weights, some low energy cardio classes. plus I have 2 wonderful small older dogs who love to walk. I no longer can do any of these things. I don't feel like myself and haven't since I contacted Covid. Fatigue, malaise, fog brain and other less annoying things. The fatigue and malaise are the worst for me. My PCP doesn't think there is long Covid and will not talk about it. I made appoint with another MD at the clinic and he told me the medicines I was taking were causing the fatigue.
I am in the process of changing PCP clinic. I am so grateful that I survived Covid. Many of the patients in the Covid ICU died before my discharge. I am trying to figure out how to live my life with no energy. All this time with hardly any energy. For example, I have gotten to a place in my life where I can meet a dear friend for coffee. After that I have to return home and take a very long nap. If I try to shop for groceries I have to ask my daughter for help taking groceries out of the car and into the house. I have so much fatigue and muscle ache.
Just recently I walked my dogs a block and a half. They were so excited to go out with me. Before Covid I was energetic, went to YMCA 5 days a week, gardened and worked on the grass, saw my friends. Did so many activities. Yes, I am 75 yet I look a young 60 and feel an old 90. I believe I will get better yet when? It is difficult to accept that I may never be and feel how I did before Covid. I did have the first 2 Covid vaccines before coming down with Covid. Now I am learning to try to pace mayself and accept my limits. Depression has been a problem for me since Covid. Most days I am not sure who I am anymore. I am happy for the individuals who have found hope and are moving on in their recovery. Maybe I am slowly moving on in recovery too yet cannot seem to recognize it?

Jump to this post

Hi @babsg1. I hope this comes across empathetic way intended. My daughter literally had to tell doctor that I was not the same person after dealing with post covid. I too was very active and did it all. A year out I still maneuver the same challenges of year ago and hope you can find ongoing posts as I have to “really pace and set realistic appreciative daily routines”. I personally experienced many providers who havnt had or been exposed to long covid patients to provide assistance for this very complex journey. I recently found myself so frustrated as realized I tried wearing a pendant that brought on terrible malaise. So I tried to give myself grace and be thankful I am at home safe surrounded by fond memories. I truly hope you can glean precious moments each day to lessen your stress and continue your healing journey the best way for you!🙂

REPLY
1 reply
babsg1 | @babsg1 | Mar 4, 2023
In reply to @law59 "Hi @babsg1. I hope this comes across empathetic way intended. My daughter literally had to tell..." + (show)
@law59

Hi @babsg1. I hope this comes across empathetic way intended. My daughter literally had to tell doctor that I was not the same person after dealing with post covid. I too was very active and did it all. A year out I still maneuver the same challenges of year ago and hope you can find ongoing posts as I have to “really pace and set realistic appreciative daily routines”. I personally experienced many providers who havnt had or been exposed to long covid patients to provide assistance for this very complex journey. I recently found myself so frustrated as realized I tried wearing a pendant that brought on terrible malaise. So I tried to give myself grace and be thankful I am at home safe surrounded by fond memories. I truly hope you can glean precious moments each day to lessen your stress and continue your healing journey the best way for you!🙂

Jump to this post

Thank you @law 59. Yes, I saw empathy and understanding through out your message. I know that I concentrate on the negatives too much. Yet I can appreciate the beautiful parts of each day. Learning how to pace myself and set realistic appreciative daily routines is something I have not learned yet. Thinking about all the things I cannot do anymore defeats me. For some reason I think I ought to heal by leaps and bounds. Long Covid sure doesn't work that way as I've found out. Being able to write a post describing what happened to me since contacting Covid and reading posts from other Covid survivors has helped me. I forgot to remember how fortunate I am that I didn't die from Covid and leaving the hospital being so grateful that I was still alive. Sometimes the reality of every day life frustrates me and instead of writing about those frustrations I let them stress me out. I sure need to be easier on myself. Yes, we who write here are all survivors of a terrible pandemic. We are the fortunate ones. Now we all are finding our way to a new life. I am so grateful I found connect.mayoclinic.org. I wrote a post or two early on in my journey then stopped. I need to read and write posts to others much more frequently. Thank you.

REPLY
beebee000 | @beebee000 | Mar 4, 2023
In reply to @kentkemmerling1949 "I had COVID 2 months before the vaccine was available and have not been able to..." + (show)
@kentkemmerling1949

I had COVID 2 months before the vaccine was available and have not been able to walk well since. My balance is terrible and I feel dizzy often. Does anyone else experience this? Also, I was the president of a couple organizations and now am just not able to organize my thoughts well enough to maintain my position. Maybe it is brain fog? Not really sure what brain fog is... can anyone describe what they experience when they say they have brain fog?

Jump to this post

yes, i have the same thing...it comes and goes. sometimes i feel as if i have been drinking! the brain fog thing , well it's as if my brain has fallen behind my thoughts..like i am slower in doing things..my mind has to think harder on what it is i want to do....never ever had this before covid that i got flying on a plane december of 2019...all this just adds to the other symptoms i have, i just thank God everyday that i am still able to work on fighting all of it....hang in there...we can beat this, we have to!!!

REPLY
beebee000 | @beebee000 | Mar 4, 2023
In reply to @ephrum "This chat room is both encouraging and depressing. It is comforting to know others are getting..." + (show)
@ephrum

This chat room is both encouraging and depressing. It is comforting to know others are getting no help from the medical professionals and suffering the same symptoms I have. At six months out, it is discouraging to see people enduring this illness for much longer. I, too, am learning to accept my limitations and work within those limits. But losing so much at 85 is sure hard to take. I engaged in group exercise 5 days a week before this hit. That provided me with so much physically, mentally, emotionally and socially. All that is gone. But I am thankful my husband and grown children are so understanding and supportive. And we are still in our home and mostly independent. Thanks to all who share their journey. May God hear our prayers.

Jump to this post

you know..i too get tired of the doctors that have no answers....sounds crappy but we have to remember most of them are not researchers, they know what they have learned and they too are human..the doctors that tick me off are the ones that say it is all in our heads or..blame it on getting older..poppycock to them, i know for a fact that mayo, cleveland and john hopkins as well as some other clinics are working on it...we have to remember this is a whole different virus....we need to stay positive and keep doing our part too, not easy..believe me i know...so hang in there!!!

REPLY
1 reply
ephrum | @ephrum | Mar 4, 2023
In reply to @beebee000 "you know..i too get tired of the doctors that have no answers....sounds crappy but we have..." + (show)
@beebee000

you know..i too get tired of the doctors that have no answers....sounds crappy but we have to remember most of them are not researchers, they know what they have learned and they too are human..the doctors that tick me off are the ones that say it is all in our heads or..blame it on getting older..poppycock to them, i know for a fact that mayo, cleveland and john hopkins as well as some other clinics are working on it...we have to remember this is a whole different virus....we need to stay positive and keep doing our part too, not easy..believe me i know...so hang in there!!!

Jump to this post

Yes, I understand this is a new disease and there is no way of diagnosing or treating it. I had a video chat with a nurse practitioner in Northwestern Unuversity's program. She was very kind and was honest in telling me they have no treatment, just suggestions for managing symptoms. My primary care physician basically dumped me. My cardiologist was understanding, but had no help
Hopefully there will be a breakthrough soon. I am doing what I can. Tried alternate day fasting for a month and some supplements, but no good results. Thanks for your response. I don't know anyone who has long covid.

REPLY
qwehatcak | @qwehatcak | Mar 4, 2023
In reply to @kentkemmerling1949 "I had COVID 2 months before the vaccine was available and have not been able to..." + (show)
@kentkemmerling1949

I had COVID 2 months before the vaccine was available and have not been able to walk well since. My balance is terrible and I feel dizzy often. Does anyone else experience this? Also, I was the president of a couple organizations and now am just not able to organize my thoughts well enough to maintain my position. Maybe it is brain fog? Not really sure what brain fog is... can anyone describe what they experience when they say they have brain fog?

Jump to this post

A neurologist told me the number 1 cause of dizziness is vestibular migraine. I couldn’t tolerate the meds, verapamil and elavil. Magnesium I could take. PT didn’t help, but she said walking is the best thing you can do, so I use walking sticks on a daily walk and ignore the dizziness. I haven’t fallen yet! I’m much better.

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