There is so much insight and wisdom packed into your comment: "...there are some schools of thought that suggest that trying to be perfect, to always be in control, to exercise our physical beings but not properly nourish our emotional, spiritual, or creative sides may have contributed to us becoming long haulers. ...unwittingly allowed the long tail ‘insult’ to our bodies to take hold (while this insult is very often a virus, it can also be from trauma(s) or from sheer exhaustion)."
When I read pieces written by people like you, high achievers now burdened by LC, I wonder if we are representative, or if our advocacy just makes us more visible.
I wonder if during those windows in time when we felt a little better, if we pushed too hard.
As a scientist, I want to keep digging. I want to understand.
Thank you so much for reading as always Mardi, and for your wonderful feedback and insights.
Do you follow Walter M. Chestnut’s work here on Substack? He recently did a post on why elite athletes seem to get hit especially hard with long COVID. I do wonder if there is something physiologically amped up in both high achievers and athletes that made us more prone to the insult. I just heard of another new long hauler this morning who, like me, was an athlete prior to LC. It’s rampant.
During the acute phase of C19, my symptoms were relatively mild and cyclic. I'd have a few bad days, then a few good ones. My husband had it at the same time. Everything was in lockdown, so there was no one to help us. I had to take care of him and myself and continue doing chores, cooking, etc. I know that I pushed myself when I would have been better off resting. (I recall one day nearly collapsing with lightheadedness and fatigue while closing up my lab and office and then repeatedly having to pull off the road while driving home.) Not an elite athlete, just a dedicated scientist.
With what I know now about mitochondrial damage and dysfunction, I suspect that many of us repeatedly created stress induced inflammatory events that were sufficient to push our mitochondria to the point of causing significant damage. As I've posted previously, my recovery required months of very disciplined diet, addition of needed supplements, stress reduction and control through meditative movement (qigong) and time in nature along with regular cognitive practices. In case anyone wants a summary it's here: https://longcovidjourney2wellness.substack.com/p/long-covid-tlc-for-mitochondria
Now, more than 4 years in, I've learned to be strategic, maintaining close awareness of my physical, cognitive and emotional states. I pay attention to the warning signs and except for the PEM caused by situations beyond my control, I've largely been able to maintain cognitive sharpness and adequate energy to meet my goals.
I take time to recuperate from PEM events and systematically return to walks with my dogs. I'll bet that our furry friends are some of our best allies in getting back into wellness.
This really resonates: “many of us repeatedly created stress induced inflammatory events that were sufficient to push our mitochondria to the point of causing significant damage.”
How I wish we would have known to drop everything during the acute illness.
I don't think that it's too late for most people to turn the corner on LC. It's just going to take longer. I think that the solution has to include education of those who experience LC, along with a willingness to follow a discipline that will allow Long Haulers to get AHEAD of the curve, ie, support biogenesis that results in healthy, functional mitochondria. It takes time, discipline and understanding.
As mentioned, my recovery required months of very disciplined diet, addition of needed supplements, stress reduction and stress control through meditative movement (qigong) and time in nature along with regular cognitive practices.
This strategy got me about 95% back to wellness. This strategy still seems to work. Now, when I get sloppy and don't take care of myself and get PEM or other symptoms, so far, it has fostered a return to an acceptable level of vitality.
I would like to be able to say that I'm back, 100%, but not quite yet.
It’s so fascinating to read your journey, because mine felt so similar. The disbelief and “how could this happen to me”, fighting to get diagnoses and treatment, the loss and grief, the despair, the fears. Then eventually acceptance, choosing hope, improving the things you can improve. What a journey it is. Thank you!
This is truly awesome thank you for sharing, and congratulations on finding some degree of healing, patience, acceptance, self compassion, and this altruistic urge to keep helping others albeit it in new ways and with new loci of control. Really a tremendous read thank you.
Thanks for the shout out Amy! I’m glad that the Bruni book has been helpful. There are so many great links in this post that I am going to have to revisit it during the week to read more. And I loce how you are choosing hope. ❤️
Thank you for including my note (and showtune!). As you say not everyone is in a place of acceptance and gratitude … but hopefully in time more people move into that space and see additional healing.
I loved this quote: “acceptance with a fighting spirit.”
If you don’t know @jodi ettenberg .. I think you would enjoy her writing! She talks a lot about acceptance and leaning into your illness - as well as the importance of letting go and not fighting your body. Have a fighting spirit - but don’t fight yourself!
What a joy to read this and that Sontag quote! Wow. I think we've come to many similar conclusions. I'm looking forward to reading more of your work and getting to know you. Thank you for inviting me to your page, Amy.
I’m thrilled that you’re here, Doc! Isn’t that Sontag post so powerful? I am tempted to quote it any time I encounter someone who is smug about their good health 😏
Oh jeez there's something in my eye. Like others have said, your journey feels so so similar to mine that I often feel like you're speaking on my behalf. In a good way. Like, you were nominated to be one of the speakers for the group and so the rest of us can nap, or more likely, take turns speaking. As a first-waver, I've worked my way over the past 4+ years to a place of ongoing grief and rage and also lots of joy -- so much joy, knitting and sewing and quilting and being able to learn new things. But still so angry about the covid denialism (and genocide denialism too, always grateful to see that mentioned). I realized, reading your post, that part of what makes me so angry is feeling like I'm not believed about my covid warnings -- not believed as a highly credentialed clinician, because I'm Not a Man and also my brain doesn't work like it used to, and not believed as a patient, a person with longcovid who wants others to not suffer as we do. But I think that people who want to not believe me/us, are not a good use of my limited energy. Better to snuggle the cat and knit a little. Thank you for your words, and for moving my thoughts along.
Ha, I’m more than happy for us to take turns speaking - especially because you’ve really encapsulated in this comment so much of how I too am feeling. And not just with the larger societal denialism but with that of folks much closer to home. I am DEFINITELY learning how to not feed any scraps of energy to that and to go brush my cats instead. It makes them so happy and it gives my noggin’ a break ☺️
yes yes EXACTLY the folks closest to home are the ones with the most potential to sap my energy. "flare trap" is what we call it in my support group, the things that most tempt us into flares. (including sewing but also including someone being confidently wrong about something so important.) <3
this was so beautiful. who knows why things happen but you have been a constant source of support and inspiration and joy and laughter so THERES THAT! 👻
Amy, this was beautiful. It made me tear. “But actively choosing hope has given me the gift of appreciating small ‘glimmers’ in everyday life - a budding flower, a delicious treat, a beautiful turn of phrase in a novel.” This!!
Actively choosing hope is no small feat and full of bravery, especially standing in the face of your current life storm. I’m so damn proud of you and you’re such an inspiration. ❤️🔥
I’m so touched that you took the time to get through this piece as a non-spoonie, Jenovia. That means the world to me (and I dare say, to my fellow spoonies - especially the ones who can’t get healthy friends and family to truly witness what they’re experiencing). Thank you for being here ☀️
Amy, thank you for your post. As many others have mentioned here, I too was an overachieving person whose life was struck down by Covid. And I really appreciate your taking the talking stick so others can nap. 😂
I admit to being triggered by the phrase “radical acceptance” which some people lift up. I just can’t….
But “acceptance with a fighting spirit” - that I can do. Anyway, just thank you. After 4+ years, I still really can’t leave the house, and can’t really walk. But I have improved. And I glean hope from the journey of others, so thank you.
Thank you for using some of your spoons today to read and comment, Amy. I have to agree with you around the choice of language; I have definitely read some phrases in recovery books that did not land with me. I have found that the phrase “what we resist, persists” was true for me. When I started to accept my situation and loosen my grip on it, I started to feel better. Wishing you better days ahead. Let’s stick together and pull each other up through - what you do with the LC Weekly newsletter does the same for me ☀️
Great article, Amy. So uplifting! I hope that everyone with Long COVID, where you are and around the world, can find the strength and optimism you exude❣️ Thanks for the mention. 🙃 Good song, isn’t it!🎶
With my LC, I went from a sad, "I can't go back to work" to an excited, "I can finally do the work I want to do!" Then I realized it wasn't going to come quickly. I've learned, and am still learning, about the importance of Pacing Myself.
My first time through LC, I got the concrete block in the middle of my head and very strict limits on screen & reading time, but my brain rewired itself, and I could take in information for longer intervals. This second time (two bouts of Covid, two waves of LC), my capacities took another hit, and I'm rewiring again. This time, I'm also taking advantage of the "I need to do something that doesn't involve thinking" intervals to do some much needed Huswifery, as the Bard would say, wresting domestic order from the chaos that dominated my home. (Caregiving will do that to a person.)
I do intend to sit down at some point and note the differences between the two waves; right now, my brain is gently telling me to switch gears, so I'm outties.
Thanks for sharing this - I suppose the silver lining (if there is one) to being a two-time hauler is that you know now the importance of really listening to your body’s signals and needs. Would you agree?
Amazing article, thank you. Your balance of hope and surrender really resonates with me. I'm here as someone living with chronic fatigue for 12 years - and catching Covid twice has definitely not helped! I resonate with this a lot: "Learning to dial down the fear was both a nervous system reset ‘hack’ as well as a brain retraining concept. Fear wasn’t serving me." It chimes with the work of John Sarno, who I recently came across through a mind-body coach called Rebecca Tolin who only started to recover when she truly accepted her illness (multiple diagnoses including CFS/ME).
I'm working through her programme, 'Be your own medicine', which has helped a lot of long covid, CFS/ME, fibro warriors, etc. I've seen significant improvement in my health in the past few months since learning to 'dial down the fear' and work with somatic safety, self-compassion, and related tools. I wish I'd known about all this years ago!
Thanks so much - I'll continue to follow your work.
Yes, Morgan! I’m so happy to hear these concepts are working for you too. Dr. Sarno is behind a lot of what Raelan Agle and Dan Buglio talk about as well on their YouTube channels. I read one of his books too. I’m also loving the Curable app at the moment, based on Alan Gordon’s work who was also quite influenced by Sarno.
Glad you’re here - thanks for reading and commenting 💛
Morgan - if you are interested in trying Curable for free for six weeks, go to this Raelan video and open up the notes underneath; there is a link to try the app.
Greetings Amy!
There is so much insight and wisdom packed into your comment: "...there are some schools of thought that suggest that trying to be perfect, to always be in control, to exercise our physical beings but not properly nourish our emotional, spiritual, or creative sides may have contributed to us becoming long haulers. ...unwittingly allowed the long tail ‘insult’ to our bodies to take hold (while this insult is very often a virus, it can also be from trauma(s) or from sheer exhaustion)."
When I read pieces written by people like you, high achievers now burdened by LC, I wonder if we are representative, or if our advocacy just makes us more visible.
I wonder if during those windows in time when we felt a little better, if we pushed too hard.
As a scientist, I want to keep digging. I want to understand.
Thank you, as always, for reaching out.
Thank you so much for reading as always Mardi, and for your wonderful feedback and insights.
Do you follow Walter M. Chestnut’s work here on Substack? He recently did a post on why elite athletes seem to get hit especially hard with long COVID. I do wonder if there is something physiologically amped up in both high achievers and athletes that made us more prone to the insult. I just heard of another new long hauler this morning who, like me, was an athlete prior to LC. It’s rampant.
It's a really interesting question.
During the acute phase of C19, my symptoms were relatively mild and cyclic. I'd have a few bad days, then a few good ones. My husband had it at the same time. Everything was in lockdown, so there was no one to help us. I had to take care of him and myself and continue doing chores, cooking, etc. I know that I pushed myself when I would have been better off resting. (I recall one day nearly collapsing with lightheadedness and fatigue while closing up my lab and office and then repeatedly having to pull off the road while driving home.) Not an elite athlete, just a dedicated scientist.
With what I know now about mitochondrial damage and dysfunction, I suspect that many of us repeatedly created stress induced inflammatory events that were sufficient to push our mitochondria to the point of causing significant damage. As I've posted previously, my recovery required months of very disciplined diet, addition of needed supplements, stress reduction and control through meditative movement (qigong) and time in nature along with regular cognitive practices. In case anyone wants a summary it's here: https://longcovidjourney2wellness.substack.com/p/long-covid-tlc-for-mitochondria
Now, more than 4 years in, I've learned to be strategic, maintaining close awareness of my physical, cognitive and emotional states. I pay attention to the warning signs and except for the PEM caused by situations beyond my control, I've largely been able to maintain cognitive sharpness and adequate energy to meet my goals.
I take time to recuperate from PEM events and systematically return to walks with my dogs. I'll bet that our furry friends are some of our best allies in getting back into wellness.
This really resonates: “many of us repeatedly created stress induced inflammatory events that were sufficient to push our mitochondria to the point of causing significant damage.”
How I wish we would have known to drop everything during the acute illness.
I don't think that it's too late for most people to turn the corner on LC. It's just going to take longer. I think that the solution has to include education of those who experience LC, along with a willingness to follow a discipline that will allow Long Haulers to get AHEAD of the curve, ie, support biogenesis that results in healthy, functional mitochondria. It takes time, discipline and understanding.
As mentioned, my recovery required months of very disciplined diet, addition of needed supplements, stress reduction and stress control through meditative movement (qigong) and time in nature along with regular cognitive practices.
This strategy got me about 95% back to wellness. This strategy still seems to work. Now, when I get sloppy and don't take care of myself and get PEM or other symptoms, so far, it has fostered a return to an acceptable level of vitality.
I would like to be able to say that I'm back, 100%, but not quite yet.
I know it’s not too late. I’ll never stop thinking it’s not too late 😁.
It’s so fascinating to read your journey, because mine felt so similar. The disbelief and “how could this happen to me”, fighting to get diagnoses and treatment, the loss and grief, the despair, the fears. Then eventually acceptance, choosing hope, improving the things you can improve. What a journey it is. Thank you!
Indeed! Thanks for reading 🧡
This is truly awesome thank you for sharing, and congratulations on finding some degree of healing, patience, acceptance, self compassion, and this altruistic urge to keep helping others albeit it in new ways and with new loci of control. Really a tremendous read thank you.
Really appreciate you taking the time to make it through, Doc. Thanks for being here 🙏🏻
Thanks for the shout out Amy! I’m glad that the Bruni book has been helpful. There are so many great links in this post that I am going to have to revisit it during the week to read more. And I loce how you are choosing hope. ❤️
Thank you, my friend! If you want to read his book, let me know and I’ll bring it on the 7th 💛
Thank you for including my note (and showtune!). As you say not everyone is in a place of acceptance and gratitude … but hopefully in time more people move into that space and see additional healing.
I loved this quote: “acceptance with a fighting spirit.”
If you don’t know @jodi ettenberg .. I think you would enjoy her writing! She talks a lot about acceptance and leaning into your illness - as well as the importance of letting go and not fighting your body. Have a fighting spirit - but don’t fight yourself!
Thanks, I’ll check her out!
What a joy to read this and that Sontag quote! Wow. I think we've come to many similar conclusions. I'm looking forward to reading more of your work and getting to know you. Thank you for inviting me to your page, Amy.
I’m thrilled that you’re here, Doc! Isn’t that Sontag post so powerful? I am tempted to quote it any time I encounter someone who is smug about their good health 😏
*quote, not post 🤦🏼♀️
Oh jeez there's something in my eye. Like others have said, your journey feels so so similar to mine that I often feel like you're speaking on my behalf. In a good way. Like, you were nominated to be one of the speakers for the group and so the rest of us can nap, or more likely, take turns speaking. As a first-waver, I've worked my way over the past 4+ years to a place of ongoing grief and rage and also lots of joy -- so much joy, knitting and sewing and quilting and being able to learn new things. But still so angry about the covid denialism (and genocide denialism too, always grateful to see that mentioned). I realized, reading your post, that part of what makes me so angry is feeling like I'm not believed about my covid warnings -- not believed as a highly credentialed clinician, because I'm Not a Man and also my brain doesn't work like it used to, and not believed as a patient, a person with longcovid who wants others to not suffer as we do. But I think that people who want to not believe me/us, are not a good use of my limited energy. Better to snuggle the cat and knit a little. Thank you for your words, and for moving my thoughts along.
Ha, I’m more than happy for us to take turns speaking - especially because you’ve really encapsulated in this comment so much of how I too am feeling. And not just with the larger societal denialism but with that of folks much closer to home. I am DEFINITELY learning how to not feed any scraps of energy to that and to go brush my cats instead. It makes them so happy and it gives my noggin’ a break ☺️
yes yes EXACTLY the folks closest to home are the ones with the most potential to sap my energy. "flare trap" is what we call it in my support group, the things that most tempt us into flares. (including sewing but also including someone being confidently wrong about something so important.) <3
In all things, I try to choose hope, too. Hope + action. You're amazing, and I'm always inspired reading about your journey. Sending lots of love. XO
It isn’t always easy, is it? I know you more than get it. Thank you for being here, Katrina 💛
this was so beautiful. who knows why things happen but you have been a constant source of support and inspiration and joy and laughter so THERES THAT! 👻
I sacrifice my body to the altar of your joy, Natalie McLoughlin the Book Queen 👸🏻
oh my lol
and EWWW, I spelled your name wrong. Very sorry!
dramatic, right? 💅🏻
Amy, this was beautiful. It made me tear. “But actively choosing hope has given me the gift of appreciating small ‘glimmers’ in everyday life - a budding flower, a delicious treat, a beautiful turn of phrase in a novel.” This!!
Actively choosing hope is no small feat and full of bravery, especially standing in the face of your current life storm. I’m so damn proud of you and you’re such an inspiration. ❤️🔥
I’m so touched that you took the time to get through this piece as a non-spoonie, Jenovia. That means the world to me (and I dare say, to my fellow spoonies - especially the ones who can’t get healthy friends and family to truly witness what they’re experiencing). Thank you for being here ☀️
I love being here and I learn so much 🥹🥰
Amy, thank you for your post. As many others have mentioned here, I too was an overachieving person whose life was struck down by Covid. And I really appreciate your taking the talking stick so others can nap. 😂
I admit to being triggered by the phrase “radical acceptance” which some people lift up. I just can’t….
But “acceptance with a fighting spirit” - that I can do. Anyway, just thank you. After 4+ years, I still really can’t leave the house, and can’t really walk. But I have improved. And I glean hope from the journey of others, so thank you.
Thank you for using some of your spoons today to read and comment, Amy. I have to agree with you around the choice of language; I have definitely read some phrases in recovery books that did not land with me. I have found that the phrase “what we resist, persists” was true for me. When I started to accept my situation and loosen my grip on it, I started to feel better. Wishing you better days ahead. Let’s stick together and pull each other up through - what you do with the LC Weekly newsletter does the same for me ☀️
Great article, Amy. So uplifting! I hope that everyone with Long COVID, where you are and around the world, can find the strength and optimism you exude❣️ Thanks for the mention. 🙃 Good song, isn’t it!🎶
Indeed! 😻
Thanks for reading, Louise, and for your support.
With my LC, I went from a sad, "I can't go back to work" to an excited, "I can finally do the work I want to do!" Then I realized it wasn't going to come quickly. I've learned, and am still learning, about the importance of Pacing Myself.
My first time through LC, I got the concrete block in the middle of my head and very strict limits on screen & reading time, but my brain rewired itself, and I could take in information for longer intervals. This second time (two bouts of Covid, two waves of LC), my capacities took another hit, and I'm rewiring again. This time, I'm also taking advantage of the "I need to do something that doesn't involve thinking" intervals to do some much needed Huswifery, as the Bard would say, wresting domestic order from the chaos that dominated my home. (Caregiving will do that to a person.)
I do intend to sit down at some point and note the differences between the two waves; right now, my brain is gently telling me to switch gears, so I'm outties.
Thanks for sharing this - I suppose the silver lining (if there is one) to being a two-time hauler is that you know now the importance of really listening to your body’s signals and needs. Would you agree?
Agree? Yes. Practice perfectly? Working on that. 😉
That’s fair. Same here.
I so appreciate your honesty and I really dig the way your mind works.
We’re in a total mutual admiration society here, Beth. Thanks for “getting” me ☺️
Amazing article, thank you. Your balance of hope and surrender really resonates with me. I'm here as someone living with chronic fatigue for 12 years - and catching Covid twice has definitely not helped! I resonate with this a lot: "Learning to dial down the fear was both a nervous system reset ‘hack’ as well as a brain retraining concept. Fear wasn’t serving me." It chimes with the work of John Sarno, who I recently came across through a mind-body coach called Rebecca Tolin who only started to recover when she truly accepted her illness (multiple diagnoses including CFS/ME).
I'm working through her programme, 'Be your own medicine', which has helped a lot of long covid, CFS/ME, fibro warriors, etc. I've seen significant improvement in my health in the past few months since learning to 'dial down the fear' and work with somatic safety, self-compassion, and related tools. I wish I'd known about all this years ago!
Thanks so much - I'll continue to follow your work.
Yes, Morgan! I’m so happy to hear these concepts are working for you too. Dr. Sarno is behind a lot of what Raelan Agle and Dan Buglio talk about as well on their YouTube channels. I read one of his books too. I’m also loving the Curable app at the moment, based on Alan Gordon’s work who was also quite influenced by Sarno.
Glad you’re here - thanks for reading and commenting 💛
Oh, I didn't know Curable was based on Alan Gordon's work - I've heard good things about it! Thanks for the info. I will look up Agle and Buglio too.
Morgan - if you are interested in trying Curable for free for six weeks, go to this Raelan video and open up the notes underneath; there is a link to try the app.
https://youtu.be/7XkQaQrty0M?feature=shared
Thanks so much Amy! That's great.
Joy and glimmers definitely help. Bed day here, so time for reading but not necessarily coherent commenting! X
I’m glad you’re giving yourself that grace. Thank you for reading ☺️