Solidarity from a fellow medic with long COVID in UK. About to be retired on ill health grounds. Feeling exhausted from trying to rest enough to get better but only very slowly gradually getting 1 step forward then 2 back. Definitely feeling on a 2 back day today 🤕😢. I identify with all the paper reading and parsing of scientific and not so scientific reports, trying to find something, anything that might work. Anything but the long slow slog through rest and meditation. Good to hear another has moved forward albeit slowly. I cheer you from the sidelines and hold on to hope that I will join you in the long slow plod to some form of normality.
I am also in a similar situation. I am perhaps 75% back to normal after going on four years. I have been denied access to being part of a Long Covid clinic by my health care provider. They tell me they are the ones to determine my options, not me and my doctors. My tachycardia was bad enough (120 hbpm at rest) that I have the care of a cardiologist. I also enrolled in a clinical drug trial run by the US government that has helped immensely, but with the current state of US politics, I don’t know if it will continue. I still have horrible fatigue and brain fog making full-time 9-5 Monday through Friday employment impossible, so me and my spouse are dependent solely on his income to keep us housed and fed and alive. I have a small farm and running it takes most of my daily energy supply. Happy that I am able to get outside and be able do the farm chores, but not sure this is what I want to do in the long term. Am exhausted all the time and this doesn’t feel like living. More like serfdom.
Utterly exhausting because of the energy required and because the energy required fluctuates. There’s no consistency! It’s very hard I think to respond to such a dynamic illness.
Also I don’t think you mentioned it but beyond fatigue, it’s incredibly expensive as well to manage my long covid. I must have spent thousands and thousands out of pocket over the last three years. I can’t imagine if I didn’t have the savings and family support.
I don’t even want to think about how much money this illness has cost me, between cost of healthcare, income loss and inability to contribute to retirement funds.
It’s mind boggling. But what’s even more Mind boggling is the billions LC will cost the economy in losses when probably paying for / subsidizing treatments would have been much cheaper in the long run 🫠
I had POTS before COVID, and have realized a bit of symptom improvement with lifestyle changes and Metoprolol... but, like you, long to not have to "tiptoe through life". (Perfect descriptor, btw)
So, while waiting for a cure or a miracle, I'm tiptoeing through each day looking for beauty and humor... and FINDING IT!
I also have a new puppy, who's magic is my secret sauce. 🥰
Related to every word. Exceptions - I'm single & about to turn 70. No kids, siblings a few states away. Making progress with trigeminal neuralgia, direct result of covid since 5 yrs ago, & Monday blacked out for no reason & did a face plant on a table. Friend took to ER (thank God), they did labs, checked heart, lungs, CT brain scan, everything's "normal" but obviously NOT. Two black eyes for a souvenir. PCP is sending to cardiologist - see neurologist in 2 weeks & pain management doc on my birthday. I blame long covid. For everything.
Perhaps not fair or accurate but it feels like it to me. Biggest life changer I've ever had.
I hate what y'all are going thru & this column is a godsend. And feel guilty for feeling glad I'm not alone ❤️🩹💞
I'm so sorry; it is such a frustrating position to be in. As a working mom dealing with chronic illness and LC, I get it. My Long COVID is relatively mild, but this describes to a tee what I experience with my autoimmune connective tissue disease. I constantly fear overdoing things (physically, mentally, emotionally) so I don't have a flare up, which makes me avoid so many of the things I used to do. And I never fully know if I'm giving too much of myself or too little (well, I eventually find out if I gave too much!) so I always feel that guilt. It's exhausting to have to be so careful all the time when most people never have to obsess over how many spoons each activity or engagement will cost them. Just the calculus itself is depleting. Wishing you continued forward progress toward recovery and a future where you don't have to obsess over spoons and treatments anymore.
I relate to all of this. I’m over five years in my long covid journey. My husband & I took a river cruise up the Rhine last September. I was very vigilant with masking and avoiding the crowds. I was enjoying feeling alive for the first time in almost 5yrs, so I let my guard down the last night. Sure enough I got Covid. It has set me back physically and mentally. While the flu, norovirus, covid, and RSV, are all high I’m terrified. Close family members have basically accused me of overreacting with my attempt to protect myself. All of it is exhausting: pacing, trial & error of new providers & treatments, the loneliness, and living in an ableist society who refuses to listen to our warnings.
As a single senior it is exhausting but luckily am retired so can shift on bad days. But had these flair ups since youth with my very rare mEDS. A bit of muscular dystrophy with connective tissues. Now finally know can pinpoint flair ups. My finger swelled huge from packing but red light helped. Also was doing gluten with bakery near.
So no fresh bread anymore.
But really key is my frequency specific Microcurrent machine stopped working. Wow. 2 weeks my body did start backwards. They told me I had to do weekly even daily for my vagus nerve and brain work. I will have a machine for life now.
I'm 18 months in to long covid. Thank heavens I'm retired on a pension, as I would not be able to work. All my life super-active, physically strong, and mentally acute. No longer. The most exhausting thing is working out how much energy every little thing will drain from me and planning to keep enough in reserve to do the things I must do in that day. Today is a "rest" day because last night I was drained to zero by an emotional but necessary conversation. And I am recovering from a "simple" cold that I have had for the last two weeks, which in itself has taken my feet out from under me energy-wise.
I will be writing a Substack post about it when I feel up to it.
THANK YOU for articulating exactly how I feel! I sent this to my family and hope it will help them further understand why my life still seems so limited even though I am improving in other ways. I have found that when I explain my status these days to others (including my doctors), I often say, "I am no longer in crisis mode, but it is still a daily struggle, and I have to make very difficult decisions about how and where I spend my energy and focus." I also usually try to articulate that these are limitations that were completely unfamiliar to me prior to Covid, and that living within these limitations means I need accommodations, assistance, and grace.
I also totally relate to becoming my own advocate and researcher. I do not have a medical background, but I comb the literature and research and listen to videos and podcasts intended for those with a medical background. Perhaps my biggest accomplishment over the past four years is understanding the Krebs Cycle, lol. I purposely hold back in many medical appointments from articulating what I have learned because it is not always received in the spirit I intend. It truly is taxing to spend so much time and thought trying to anticipate how I might show up at an appointment and get what I need within a 10-15 min window... all while appearing credible but not TOO credible, intelligent but not TOO high functioning, presentable but not TOO put together, etc. Human bias is exhausting, isn't it?!
I’ve had LC since 2022 - my heart rate used to hit 170 going up the stairs, and I would crash after any activity I used to do with ease, but I kept going till I could go no more. I became severe a year ago and was bedbound for several months. I’ve been building back ever since.
I wonder, because you didn’t include emotional work here, if you’ve explored root cause(s) other than the virus itself?
From what I’ve gathered from speaking with others in their 30s and 40s and watching recovery stories, most of us tend to have unresolved trauma, shame, coping strategies such as perfectionism and people pleasing, and importantly - difficulty processing our emotions.
I bring it up because you mentioned staying vigilant and keeping a strict routine, which could suggest a need for safety. Of course it’s terrifying to have an illness nobody understands / that threatens lower levels of functioning, which only keeps us stuck in these periods of shut down. Finding our own sense of safety is paramount for recovery.
For me, moving trapped emotions feels like closing out large apps running in the background, draining my battery. I’m also stabilizing with meds, sleep, sunlight, nutrition, hydration, etc. but freeing up this emotional energy allows my body to heal itself. It’s a paradox in that accepting my current reality has actually led to an increase in capacity.
Hang in there. After a five year journey resulting being completely disabled by 2024,I have found that medical symptom management plus lifestyle changes plus brain retraining plus extreme rest plus gentle movement is working - although progress is back and forth and progressive in tiny steps. The brain retraining was essential but it’s not the entire solution. If I miss even a half day of my medical pharmaceuticals, I regress. Mental health support is essential because the journey is long and disheartening. Wishing you the best. Thanks for advocating.
Solidarity from a fellow medic with long COVID in UK. About to be retired on ill health grounds. Feeling exhausted from trying to rest enough to get better but only very slowly gradually getting 1 step forward then 2 back. Definitely feeling on a 2 back day today 🤕😢. I identify with all the paper reading and parsing of scientific and not so scientific reports, trying to find something, anything that might work. Anything but the long slow slog through rest and meditation. Good to hear another has moved forward albeit slowly. I cheer you from the sidelines and hold on to hope that I will join you in the long slow plod to some form of normality.
I am also in a similar situation. I am perhaps 75% back to normal after going on four years. I have been denied access to being part of a Long Covid clinic by my health care provider. They tell me they are the ones to determine my options, not me and my doctors. My tachycardia was bad enough (120 hbpm at rest) that I have the care of a cardiologist. I also enrolled in a clinical drug trial run by the US government that has helped immensely, but with the current state of US politics, I don’t know if it will continue. I still have horrible fatigue and brain fog making full-time 9-5 Monday through Friday employment impossible, so me and my spouse are dependent solely on his income to keep us housed and fed and alive. I have a small farm and running it takes most of my daily energy supply. Happy that I am able to get outside and be able do the farm chores, but not sure this is what I want to do in the long term. Am exhausted all the time and this doesn’t feel like living. More like serfdom.
I’m gonna have to request a photo of a farm animal or a crop. Because those make me feel good 😊
Have to figure out how to attach an image to a comment on Substack, LOL!
Utterly exhausting because of the energy required and because the energy required fluctuates. There’s no consistency! It’s very hard I think to respond to such a dynamic illness.
Also I don’t think you mentioned it but beyond fatigue, it’s incredibly expensive as well to manage my long covid. I must have spent thousands and thousands out of pocket over the last three years. I can’t imagine if I didn’t have the savings and family support.
I don’t even want to think about how much money this illness has cost me, between cost of healthcare, income loss and inability to contribute to retirement funds.
It’s mind boggling. But what’s even more Mind boggling is the billions LC will cost the economy in losses when probably paying for / subsidizing treatments would have been much cheaper in the long run 🫠
I get it. I feel for you.
I had POTS before COVID, and have realized a bit of symptom improvement with lifestyle changes and Metoprolol... but, like you, long to not have to "tiptoe through life". (Perfect descriptor, btw)
So, while waiting for a cure or a miracle, I'm tiptoeing through each day looking for beauty and humor... and FINDING IT!
I also have a new puppy, who's magic is my secret sauce. 🥰
Keep laughing!
We need a photo of toe beans, at least
Related to every word. Exceptions - I'm single & about to turn 70. No kids, siblings a few states away. Making progress with trigeminal neuralgia, direct result of covid since 5 yrs ago, & Monday blacked out for no reason & did a face plant on a table. Friend took to ER (thank God), they did labs, checked heart, lungs, CT brain scan, everything's "normal" but obviously NOT. Two black eyes for a souvenir. PCP is sending to cardiologist - see neurologist in 2 weeks & pain management doc on my birthday. I blame long covid. For everything.
Perhaps not fair or accurate but it feels like it to me. Biggest life changer I've ever had.
I hate what y'all are going thru & this column is a godsend. And feel guilty for feeling glad I'm not alone ❤️🩹💞
I'm so sorry; it is such a frustrating position to be in. As a working mom dealing with chronic illness and LC, I get it. My Long COVID is relatively mild, but this describes to a tee what I experience with my autoimmune connective tissue disease. I constantly fear overdoing things (physically, mentally, emotionally) so I don't have a flare up, which makes me avoid so many of the things I used to do. And I never fully know if I'm giving too much of myself or too little (well, I eventually find out if I gave too much!) so I always feel that guilt. It's exhausting to have to be so careful all the time when most people never have to obsess over how many spoons each activity or engagement will cost them. Just the calculus itself is depleting. Wishing you continued forward progress toward recovery and a future where you don't have to obsess over spoons and treatments anymore.
I relate to all of this. I’m over five years in my long covid journey. My husband & I took a river cruise up the Rhine last September. I was very vigilant with masking and avoiding the crowds. I was enjoying feeling alive for the first time in almost 5yrs, so I let my guard down the last night. Sure enough I got Covid. It has set me back physically and mentally. While the flu, norovirus, covid, and RSV, are all high I’m terrified. Close family members have basically accused me of overreacting with my attempt to protect myself. All of it is exhausting: pacing, trial & error of new providers & treatments, the loneliness, and living in an ableist society who refuses to listen to our warnings.
As a single senior it is exhausting but luckily am retired so can shift on bad days. But had these flair ups since youth with my very rare mEDS. A bit of muscular dystrophy with connective tissues. Now finally know can pinpoint flair ups. My finger swelled huge from packing but red light helped. Also was doing gluten with bakery near.
So no fresh bread anymore.
But really key is my frequency specific Microcurrent machine stopped working. Wow. 2 weeks my body did start backwards. They told me I had to do weekly even daily for my vagus nerve and brain work. I will have a machine for life now.
I'm 18 months in to long covid. Thank heavens I'm retired on a pension, as I would not be able to work. All my life super-active, physically strong, and mentally acute. No longer. The most exhausting thing is working out how much energy every little thing will drain from me and planning to keep enough in reserve to do the things I must do in that day. Today is a "rest" day because last night I was drained to zero by an emotional but necessary conversation. And I am recovering from a "simple" cold that I have had for the last two weeks, which in itself has taken my feet out from under me energy-wise.
I will be writing a Substack post about it when I feel up to it.
THANK YOU for articulating exactly how I feel! I sent this to my family and hope it will help them further understand why my life still seems so limited even though I am improving in other ways. I have found that when I explain my status these days to others (including my doctors), I often say, "I am no longer in crisis mode, but it is still a daily struggle, and I have to make very difficult decisions about how and where I spend my energy and focus." I also usually try to articulate that these are limitations that were completely unfamiliar to me prior to Covid, and that living within these limitations means I need accommodations, assistance, and grace.
I also totally relate to becoming my own advocate and researcher. I do not have a medical background, but I comb the literature and research and listen to videos and podcasts intended for those with a medical background. Perhaps my biggest accomplishment over the past four years is understanding the Krebs Cycle, lol. I purposely hold back in many medical appointments from articulating what I have learned because it is not always received in the spirit I intend. It truly is taxing to spend so much time and thought trying to anticipate how I might show up at an appointment and get what I need within a 10-15 min window... all while appearing credible but not TOO credible, intelligent but not TOO high functioning, presentable but not TOO put together, etc. Human bias is exhausting, isn't it?!
Total solidarity, thank you for this wonderful essay!
I’ve had LC since 2022 - my heart rate used to hit 170 going up the stairs, and I would crash after any activity I used to do with ease, but I kept going till I could go no more. I became severe a year ago and was bedbound for several months. I’ve been building back ever since.
I wonder, because you didn’t include emotional work here, if you’ve explored root cause(s) other than the virus itself?
From what I’ve gathered from speaking with others in their 30s and 40s and watching recovery stories, most of us tend to have unresolved trauma, shame, coping strategies such as perfectionism and people pleasing, and importantly - difficulty processing our emotions.
I bring it up because you mentioned staying vigilant and keeping a strict routine, which could suggest a need for safety. Of course it’s terrifying to have an illness nobody understands / that threatens lower levels of functioning, which only keeps us stuck in these periods of shut down. Finding our own sense of safety is paramount for recovery.
For me, moving trapped emotions feels like closing out large apps running in the background, draining my battery. I’m also stabilizing with meds, sleep, sunlight, nutrition, hydration, etc. but freeing up this emotional energy allows my body to heal itself. It’s a paradox in that accepting my current reality has actually led to an increase in capacity.
Please reach out if you’d like to chat. 💓
Hang in there. After a five year journey resulting being completely disabled by 2024,I have found that medical symptom management plus lifestyle changes plus brain retraining plus extreme rest plus gentle movement is working - although progress is back and forth and progressive in tiny steps. The brain retraining was essential but it’s not the entire solution. If I miss even a half day of my medical pharmaceuticals, I regress. Mental health support is essential because the journey is long and disheartening. Wishing you the best. Thanks for advocating.
Thank you for this latest piece which resonates deeply with me.