Also “Honestly, what did you expect us to do - sit around and wait decades for medical research to find us the answers? Ask the ME/CFS crowd how that’s worked out for them.” 🎯
"For some reason, this angers some folks in this community. If others have used neuroplasticity or nervous system regulation programs or tools to get better, they think we’re somehow endorsing an “it’s all in our heads” model of thinking.."
This is a curious one for sure. Last I looked my head and, more significantly, my brain were pretty closely connected to my body. In fact the connection is so close that I'm fairly sure my body wouldn't do so well on its own.
The problem is that so many people are stuck with Descartes idea of mind and body being separate or even distinct entities.
Neuroplasticity is a physical thing. Anything we do to make our brains work a bit harder, within limits of course, creates new physical connections that will help improve functioning of that area.
This is what holistic thinking is about - letting go of the notion that there are separate bits of us that have no connection rather than adaptive thinking that if we do small things daily we can see improvements emerge slowly over time.
5 years here too and it's been a long hard slog, but every few months I notice a change, an improvement, a return of a skill or way of being that I thought was gone for good.
There's no going back but there's plenty of scope for going forwards.
It's been on my mind a lot especially when I keep reading about the so called mind - body connection being touted by the wellness industry.
However I have Daniel Dennet to thank for helping me to iexpress it clearly. From Bacteria to Bach is an excellent and challenging read that goes right to the heart of this very early on.
I'm here for the humor, links, news, and solidarity! I'm kinda past talking about being sick for my own catharsis (more just write to share the wisdom for newbs now), but I want to be a little in the loop now that I'm not active in patient groups. Someone tell me if the cure comes out!
And about that...
The recovery bit is tricky. I'm a MEep, and about 3% of us recover. The numbers for Long Covid are more encouraging. I've never been fully well in my entire life—I had health problems as a little. *Seven* (yes, seven) brain retraining programs either made me catastrophically, permanently worse, or did nothing symptomatically but imbued some helpful wisdom. Unfortunately, my experience has been heavily weighted towards the former.
But, I believe the people they helped. Despite my own dismal brain healing results. And! I have completely unpredictable random upswings for reasons as unexpected as Covid boosters being invented or realizing my probiotics were trying to kill me. It's clear my case is poorly understood and there's so much more to learn, and happy accidents to happen. They never seem to happen when I'm begging for a miracle, though, and that's hard.
Recovery is possible (if not likely or promised), always worth a shot, and often maddeningly so much further beyond our control than we can imagine. For me, it does not seem to be in regulating my nervous system or challenging my limiting beliefs. It's a balance for me of empathy for myself and others who may never see recovery in this lifetime...or randomly find ourselves inexplicably better by Tuesday...and encouraging anyone who can get out of a fatiguing illness in any way to run like hell.
Haha, I’ll DM you if/when the cure comes our way 🤭.
Thank you for sharing what you have here. I’ve just been going back and forth respectfully with a long COVID friend who feels very much the way you do here. And having done a few brain training programs that really didn’t land for me, I take your points about them as well. You’re not the first to say some of them worsened things. <sigh>…
I think I’ve just always felt like the 3-5% number I’ve heard re: ME/CFS recovery was hard for me to cling to. Is it based in science? The brain is so powerful and will believe what we tell it, and I think a lot of docs have done a disservice by planting this low number in people’s heads. I say that knowing full well that not everyone can or will recover, but I think that’s an old number that predates a lot of the brain retraining and nervous system recovery programs. It *feels* like more MEeps are recovering than did 20 years ago, but that could be confirmation bias on my part.
Oh, and the random “now you are better, now you are worse” aspect that seems to tie to nothing tangible is such a mindfuck. You almost have to just find a weird sense of humor about it.
Yes please to DMing me about the cure! Tomorrow, preferably.
That's a great point about the low number. And to muddy things further...we still don't even know what ME *is*...not enough to keep it from being probably 20 different patient subsets with varied physiology.
It probably is true more MEeps are recovering, and/or a broader swath of people are being diagnosed.
Regardless, a thought I've had...even if it's 3%...why not me? It could be me! I'm one of the ??? percent that got this pile of health problems in the first place...I can be a rare bird!
Sorry it’s taken me a week to comment, Amy, but congratulations on hitting the 2 year mark! I most enjoy reading the narratives about your life and your recovery journey. You are a wonderful storyteller, and I mostly read The Tonic to learn about the next part of your story. I also skim all the links and read the articles that interest me, without any particular focus. I tend to avoid the super technical articles because they overwhelm me, but that’s just me. Anyway, I am looking forward to reading whatever comes next!
Excited to see what you do next. And 2 years is a feat. I’d love to hear more about this phase of your experience. I know it may not hit for everyone, but I don’t know that we all need to be in exactly the same place in our lives/illnesses (which aren’t linear anyway) to glean some insights from others. I’d be curious about how you’re thinking about building community now, navigating work (both for money and other kinds of labor), expanding or reintegrating parts of yourself and past interests (or not); how you’re navigating our ongoing pandemic, balancing that expansion of your life with mitigation strategies. I also like the links!
Regarding the divisive conversation around neuroplasticity/nervous system regulation in ME, long covid and other post viral conditions: I wonder if part of the reaction is that this model centers individual responsibility and individual action in what is a profoundly collective experience, and the very reasonable fear is that this draws attention (and potential funding) away from medical research and misinforms or shores up dismissive ideas for health care providers who know little about it or are otherwise disinclined to believe their patients anyway. And there can be a dismissive kind of “it’s your fault if it doesn’t work for you” attitude in some corners of these spaces, which sucks. Seems like you can’t swing a pair of compression stockings around here without hitting a wellness coach hocking some pretty punitive ideas.
It feels like a both situation--the hardest kind of situation. These practices are helping a lot of people AND there are always going to be ways to weaponize mind-body medicine to justify stripping needed healthcare from people who they would claim “have the power to change themselves,” or whatever other self-help slop. And there will always be people who gravitate towards mind-body ideas to try to avoid the reality of having to rely on other people while living in a fallible body. Stripped of context, and good faith thinking, this corner of wellness can echo some damaging MAHA movement / healthism ideologies. It can be hard to make this conversation feel inclusive, to acknowledge the ways that this is really useful to many people without precluding social models of disability or collective solutions to public health crises. I don’t know…it’s hard to be in a complicated little body in a complicated big world!
I appreciate this comment on every level, Alix - thank you for taking the time to flesh all of this out. First, your suggestions for where I can head next are great and I will be taking notes. I had already planned to do something about reintegrating labor, so it’s good to hear that could be of interest to you.
It is indeed complicated to think about building/maintaining community as things shift for me. I think you’ve hit the nail on the head as far as why I wrote this particular post right now. I don’t know that I’ve been super intentional about building community with The Tonic; I guess I started writing what I wasn’t seeing much of (reality about these illnesses combined with lightness/hope/cheer). To the extent that a community has formed, it feels like it has happened organically. And - perhaps this is a cop-out - I don’t know if I really want the responsibility of building/maintaining a community 🫣. In my former life, I ran a department of 55 staff across 12 programs in a non-profit trauma setting. One big goal of my role was to create a sense of community within my department and work to bring everyone along on shared values and vision. Phew! It was WORK. And I loved it. I grieved having to leave it behind because of long COVID. But now that it’s three years in my rear view, I realize it was one of the things that felt like immense, dysregulating pressure. So maybe I need to chew on this a bit more, but my initial reaction is to just keep doing what I do here and folks will feel it or they won’t. I like your suggested topics because I can still locate myself in them.
I take all your points re: mind-body recovery stuff. Here’s what’s interesting: I did a few programs (Gupta, Alex Howard’s RESET, and Dr. Eleanor Stein’s Pathways to Improvement) that didn’t really work for me. I took pieces of them to heart, so not a total loss, but they didn’t move the needle much. The big thing that was missing was the sense of the collective - exactly as you’ve said. The program I’m in now - CFS Recovery - gives me a community to be a part of, where everyone is at different illness levels and working through things out loud. It also has given me access to coaches and a level of “accountability” that I felt I personally needed, since I got to 75% and stayed at that plateau for a while.
I know that’s not exactly what you meant by individual vs. collective. I guess my point is that we can find the collective in multiple spaces and ways. I personally was struggling with the concepts of internal locus of control vs. external. I tried the route of putting my illness and wellness in the hands of others, over years, and that got me nowhere (and I had and have some excellent, well-meaning doctors). I don’t know that seizing the control and turning it inward is something that can work for everyone, and I agree that this should not at all be seen as a personal failing. I do understand that we patients who are trying to navigate what’s best here are at risk of falling prey to the rugged individualism shit that now seems to be permeating our healthcare systems again, starting in the U.S. with that whack job RFK Jr. I don’t want to contribute to that steaming pile of horseshit. “Seems like you can’t swing a pair of compression stockings around here without hitting a wellness coach hocking some pretty punitive ideas.” Such a great line - spot on.
I think the bottom line is, I’d like to lend hope and certain concepts to anyone who wants them. And I don’t want to get caught in the trap of, “there’s only one right way here.” Or, “this worked for me, so it’ll work for you.” I want to keep covering all the things, for as long as that makes sense, with the goal of helping people at all places within these illnesses find something that speaks to them. Is that too lofty? 🤷♀️🫠
Well 6 weeks later (I'm on LC time...), I can still say, no, not too lofty! Also, for what it's worth, when I mentioned writing about if/how you're building community, I was more just wondering how you're navigating and negotiating relationships, friendships, etc, new and old. I know so many people struggling with how to maintain connections while still coping with limitations, meeting new people (though rarely!) and asking for what we need re: covid safety, energy boundaries, etc. There's just a lot of tension there, and I'm always wondering how other people are living it out!
I'm also going to DM with another questions if that ok!
Ahh, gotcha - I probably should have asked what you meant by community before assuming and crafting a whole response that wasn’t relevant 🤦🏼♀️🙃.
Your relationships/friendships question is a good one, and would probably be a whole post on its own for me. Quick answer: 97% of my friends believed and supported me when I was very sick, and I felt fortunate for that, given some of the stories I’ve heard from folks. Most respected my COVID cautiousness and energy limitations, and in the early days, this meant they visited me on my small deck outside for an hour at most. Eventually as I slowly got better, socializing was the first area I expanded in, because I was an extrovert before the pandemic and the joy that it brings me I knew would be good neurochemically for my brain. I’ve been able to maintain most of my friendships except a few, one of which was a painful loss but not my choice and I had to grieve it and let it go eventually.
Shortish answer for now, but if you’ve got more specific questions about this, do let me know! Here or DM is fine.
I like to read your perspective on things, in general. I may click a couple of links, watch a fun video for entertainment and I'm following your adventures with Ripley. It's like a magazine I'll browse through and come back to, to check some of the more serious links/topics you've found. Interestingly, I've usually picked up on the same headline news as you, whether I've clicked to read it depends on how much bandwidth I have. I never have time/capacity to go through all your links but I usually read your news.
Been pondering what to write - like you I am nearing recovery. Poking my head outside the disability bubble and engaging with other able bodied communities for the first time in years (Knitting, Meditation) Paying to be part of disability/ME friendly communities for Yoga (Nourish Therapeutic Yoga and Cozy Yoga Club) that offer chat and support as well as a physical practice that widens my horizons. My physical symptoms of ME are receding, but the brain fog is real still. I love your writing and the company of someone steps ahead of me. I don't read the links, too foggy to navigate all those densely packed headings, and too many tabs open of things I want to read straight away and will get too when I'm less foggy. I like your style.
Thank you for reading and commenting, Audrey. I’m on those Nourish Yoga classes with you ☺️. Even though I’m capable of doing regular yoga now, I love the opportunity to lay on my mat and regulate myself mid-week. Shannon is such a soothing presence, right?
I’m with you on the last vestiges of recovery being a bit of brain fog still, especially after a few hours of computer time. Yesterday I did about five hours of computer time total (spread out in 1-2 hour chunks) and my brain felt fried. I’m hopeful that this will get better too as time passes.
I’m considering trying to cut down on the amount of links in each post. Do you think that would make a difference for you? Or maybe I can also format them differently?
I think a different format would help for me - more space or different text between them. Having said that I do have a lot of links opened in my browser that are things that are top of my list to read and linger round for weeks or months.
Would a line break between each heading help? That would add more space visually. And maybe I’ll just call the webinars/podcasts/videos heading “Health Resources” to simplify. I’m open to any other suggestions you have. You would not be the first long COVID/ME person who asked me to make some changes. I took GIFs out almost entirely by request, because one long hauler said the fact that there’s motion was too jarring for her. I want my posts to be accessible, especially to our community!
I do enjoy exploring the links you provide and definitely appreciate the lightheartedness and humor in your articles :)
And totally relate to what you said about nervous system work being a sensitive spot in the chronic illness community. I’ve definitely gotten some stern comments when sharing my story in a Reddit post or two 😅 It’s an important piece to a more encompassing strategy, not the full picture, but an important part nonetheless! It’s not in our heads but when you have a nervous system disorder it’s a no-brainer (pun intended) that this can be a helpful area to focus on.
Your newsletter is one of my favorites here on Substack, keep up the great work!
Totally agree with you on NS work being part of the overall strategy, and that it can’t hurt to work on staying calm and regulated, no matter what. And thank you for your kind words! I think I actually blushed when you said mine was one of your faves 😊. Seems we also have a mutual admiration society going, because I love everything you put out as well!
But firstly, AJLT, WTF - it’s been brilliant!!😂 is it just me that loves it then?
I’ve loved this season so much I’ve watching the entire SITC shows …. Again !!
I bloody love the girls, the clothes, the trials and tribulations. I like being far away from the city these days but I like watching this 50+ women in it😍
As someone else in full recovery, and who also understands that way many more of us will have the possibility to recover with the new paradigm over the old one, I of course, love hearing all about your life as it is now. Given the understanding of just how limiting it was prior.
It is true that privilege makes it possible - and our ancestors did not have our level of privilege. With many worldwide still not yet accessing it either. But personally I do feel it’s those of us In it who have gone the distance that will be able to share what we’ve learned and make our offerings accessible to de many others. We’ve got to start somewhere right? And expecting people who have never been through it to be the change…well, look how that’s working out🤷🏼♀️
I know in my own case, I am here, utilising my privilege to help others in the way I wasn’t. But I am but one person wanting to unite with many more of us, to make the biggest global difference. A difference that is coming.
I do also recognise it can feel invalidating to hear that there is something you can do about it. After so many years (usually decades) of suffering. This can be a brutal blow to receive. It’s traumatic in itself.
I look forward to the days when this journey will be more understood. Celebrated even.
Personally, I think I just love to witness you in all your glory. All the messiness of human existence - the highs, the lows, the wins, the celebrations, the lessons, the insights. And I do dabble in the occasional link.
☺️☺️☺️ thank you for always being so supportive here. I’m honored to be in these messy recoveries together!
AJLT…I do hear you! I love the clothes and I love seeing parts of NYC, since I lived there for seven years and now live only an hour away. And I think adapting their various situations to be relevant to women in their 50s is appropriate. I just find some of the writing really forced/silly. That’s my big complaint about it. But of course I watched every minute anyway! lol.
Happy 2 years, Amy!!! I’ve loved following along your journey, and you’ve taught me so much about long COVID. I never knew what “spoonies” meant until you! However you feel inspired to express yourself, I’m here for it all!! ❤️🔥
I read most of your posts, but don’t click on many of the links; as you know, my disability is lifelong and not long Covid.
I am definitely in it for the cats, and I love Ripley, starting with her name.
Authentic camaraderie is nothing to sneeze 🤧 at! I have spent most of my life trying to get across to people that not only do most people with disabilities have a lot in common (just the politics alone should bring us together), but we also have a lot in common with other disenfranchised people.
For example, how many of us are hate watching AJLT? (Actually, it’s more like disappointment watching for me.) I stopped watching for a few weeks, and then went back to binge it. I even thought the season was over a couple of times—and it just kept going!
WTF was that storyline with Aidan anyway? He was being such an asshole for most of the season, and neither of them ever had a true epiphany about what idiots they were both being.
Carrie’s shoe and clothes thing—which was cute when she was younger now just feels sad to me now.
I will watch the finale, but it feels like a mercy-killing to me at this point.
Sometimes, I get down on myself for frittering away my time on bingeing shows and digital color-by-number, and then I think maybe I have earned a little drama-free period in a drama/trauma filled life…
In it for the cats! Good thing I didn’t do a survey, because I would have left that option out inadvertently!
Understood re: links. I’d say fewer than half are about long COVID, but still, the others may not appeal to you. Or they just take you down a rabbit hole.
OMG, that Aidan nonsense! I’m like, “wait - so it’s okay that he slept with his ex-wife (oopsie!), but Carrie edits a book with her neighbor and all of a sudden she’s not “100%” in?!” Fuck off, guy!
I actually don’t mind that the gals are toned down or changed versions of their former selves (as many who criticize the show say). Who *doesn’t* change by their 50’s-60’s?? But I have to agree with you about Carrie’s clothes and shoes. I think the show could have found a way to realistically shift her style a bit while still keeping it 60yo edgy. And the heels are just impractical and absurd.
Mercy-killing! 🤣🤣 you are hilarious, Teri. That’s the perfect way to describe it 🤭
I will be happy to read whatever you’re throwing down here. The line you put about And Just Like That is something I’ve said every season too. I haven’t started the new/last season m yet but I’m here for it in all its terrible glory.
Congrats on 2y!!!
Also “Honestly, what did you expect us to do - sit around and wait decades for medical research to find us the answers? Ask the ME/CFS crowd how that’s worked out for them.” 🎯
Thank you!
"For some reason, this angers some folks in this community. If others have used neuroplasticity or nervous system regulation programs or tools to get better, they think we’re somehow endorsing an “it’s all in our heads” model of thinking.."
This is a curious one for sure. Last I looked my head and, more significantly, my brain were pretty closely connected to my body. In fact the connection is so close that I'm fairly sure my body wouldn't do so well on its own.
The problem is that so many people are stuck with Descartes idea of mind and body being separate or even distinct entities.
Neuroplasticity is a physical thing. Anything we do to make our brains work a bit harder, within limits of course, creates new physical connections that will help improve functioning of that area.
This is what holistic thinking is about - letting go of the notion that there are separate bits of us that have no connection rather than adaptive thinking that if we do small things daily we can see improvements emerge slowly over time.
5 years here too and it's been a long hard slog, but every few months I notice a change, an improvement, a return of a skill or way of being that I thought was gone for good.
There's no going back but there's plenty of scope for going forwards.
🌻☺️
You’ve said all that better than I could, Jon. I totally agree. Thanks for reading and for your wise words. And wishing you continued improvement!
Gosh, thank you 🤗
It's been on my mind a lot especially when I keep reading about the so called mind - body connection being touted by the wellness industry.
However I have Daniel Dennet to thank for helping me to iexpress it clearly. From Bacteria to Bach is an excellent and challenging read that goes right to the heart of this very early on.
Be well 🥰
Of the four horsemen (of new atheism), he’s the one I’ve read the least. Thanks for the rec!
I'm here for the humor, links, news, and solidarity! I'm kinda past talking about being sick for my own catharsis (more just write to share the wisdom for newbs now), but I want to be a little in the loop now that I'm not active in patient groups. Someone tell me if the cure comes out!
And about that...
The recovery bit is tricky. I'm a MEep, and about 3% of us recover. The numbers for Long Covid are more encouraging. I've never been fully well in my entire life—I had health problems as a little. *Seven* (yes, seven) brain retraining programs either made me catastrophically, permanently worse, or did nothing symptomatically but imbued some helpful wisdom. Unfortunately, my experience has been heavily weighted towards the former.
But, I believe the people they helped. Despite my own dismal brain healing results. And! I have completely unpredictable random upswings for reasons as unexpected as Covid boosters being invented or realizing my probiotics were trying to kill me. It's clear my case is poorly understood and there's so much more to learn, and happy accidents to happen. They never seem to happen when I'm begging for a miracle, though, and that's hard.
Recovery is possible (if not likely or promised), always worth a shot, and often maddeningly so much further beyond our control than we can imagine. For me, it does not seem to be in regulating my nervous system or challenging my limiting beliefs. It's a balance for me of empathy for myself and others who may never see recovery in this lifetime...or randomly find ourselves inexplicably better by Tuesday...and encouraging anyone who can get out of a fatiguing illness in any way to run like hell.
Haha, I’ll DM you if/when the cure comes our way 🤭.
Thank you for sharing what you have here. I’ve just been going back and forth respectfully with a long COVID friend who feels very much the way you do here. And having done a few brain training programs that really didn’t land for me, I take your points about them as well. You’re not the first to say some of them worsened things. <sigh>…
I think I’ve just always felt like the 3-5% number I’ve heard re: ME/CFS recovery was hard for me to cling to. Is it based in science? The brain is so powerful and will believe what we tell it, and I think a lot of docs have done a disservice by planting this low number in people’s heads. I say that knowing full well that not everyone can or will recover, but I think that’s an old number that predates a lot of the brain retraining and nervous system recovery programs. It *feels* like more MEeps are recovering than did 20 years ago, but that could be confirmation bias on my part.
Oh, and the random “now you are better, now you are worse” aspect that seems to tie to nothing tangible is such a mindfuck. You almost have to just find a weird sense of humor about it.
Yes please to DMing me about the cure! Tomorrow, preferably.
That's a great point about the low number. And to muddy things further...we still don't even know what ME *is*...not enough to keep it from being probably 20 different patient subsets with varied physiology.
It probably is true more MEeps are recovering, and/or a broader swath of people are being diagnosed.
Regardless, a thought I've had...even if it's 3%...why not me? It could be me! I'm one of the ??? percent that got this pile of health problems in the first place...I can be a rare bird!
You’re already a rare bird 🐦, proving your point!
All your points are spot on, which I want to say also makes you a rare bird 🤭.
Sorry it’s taken me a week to comment, Amy, but congratulations on hitting the 2 year mark! I most enjoy reading the narratives about your life and your recovery journey. You are a wonderful storyteller, and I mostly read The Tonic to learn about the next part of your story. I also skim all the links and read the articles that interest me, without any particular focus. I tend to avoid the super technical articles because they overwhelm me, but that’s just me. Anyway, I am looking forward to reading whatever comes next!
Thank you, Paula! That feedback is really helpful. And thank you for your consistent support of my writing - that really means a lot to me ☺️
Excited to see what you do next. And 2 years is a feat. I’d love to hear more about this phase of your experience. I know it may not hit for everyone, but I don’t know that we all need to be in exactly the same place in our lives/illnesses (which aren’t linear anyway) to glean some insights from others. I’d be curious about how you’re thinking about building community now, navigating work (both for money and other kinds of labor), expanding or reintegrating parts of yourself and past interests (or not); how you’re navigating our ongoing pandemic, balancing that expansion of your life with mitigation strategies. I also like the links!
Regarding the divisive conversation around neuroplasticity/nervous system regulation in ME, long covid and other post viral conditions: I wonder if part of the reaction is that this model centers individual responsibility and individual action in what is a profoundly collective experience, and the very reasonable fear is that this draws attention (and potential funding) away from medical research and misinforms or shores up dismissive ideas for health care providers who know little about it or are otherwise disinclined to believe their patients anyway. And there can be a dismissive kind of “it’s your fault if it doesn’t work for you” attitude in some corners of these spaces, which sucks. Seems like you can’t swing a pair of compression stockings around here without hitting a wellness coach hocking some pretty punitive ideas.
It feels like a both situation--the hardest kind of situation. These practices are helping a lot of people AND there are always going to be ways to weaponize mind-body medicine to justify stripping needed healthcare from people who they would claim “have the power to change themselves,” or whatever other self-help slop. And there will always be people who gravitate towards mind-body ideas to try to avoid the reality of having to rely on other people while living in a fallible body. Stripped of context, and good faith thinking, this corner of wellness can echo some damaging MAHA movement / healthism ideologies. It can be hard to make this conversation feel inclusive, to acknowledge the ways that this is really useful to many people without precluding social models of disability or collective solutions to public health crises. I don’t know…it’s hard to be in a complicated little body in a complicated big world!
I appreciate this comment on every level, Alix - thank you for taking the time to flesh all of this out. First, your suggestions for where I can head next are great and I will be taking notes. I had already planned to do something about reintegrating labor, so it’s good to hear that could be of interest to you.
It is indeed complicated to think about building/maintaining community as things shift for me. I think you’ve hit the nail on the head as far as why I wrote this particular post right now. I don’t know that I’ve been super intentional about building community with The Tonic; I guess I started writing what I wasn’t seeing much of (reality about these illnesses combined with lightness/hope/cheer). To the extent that a community has formed, it feels like it has happened organically. And - perhaps this is a cop-out - I don’t know if I really want the responsibility of building/maintaining a community 🫣. In my former life, I ran a department of 55 staff across 12 programs in a non-profit trauma setting. One big goal of my role was to create a sense of community within my department and work to bring everyone along on shared values and vision. Phew! It was WORK. And I loved it. I grieved having to leave it behind because of long COVID. But now that it’s three years in my rear view, I realize it was one of the things that felt like immense, dysregulating pressure. So maybe I need to chew on this a bit more, but my initial reaction is to just keep doing what I do here and folks will feel it or they won’t. I like your suggested topics because I can still locate myself in them.
I take all your points re: mind-body recovery stuff. Here’s what’s interesting: I did a few programs (Gupta, Alex Howard’s RESET, and Dr. Eleanor Stein’s Pathways to Improvement) that didn’t really work for me. I took pieces of them to heart, so not a total loss, but they didn’t move the needle much. The big thing that was missing was the sense of the collective - exactly as you’ve said. The program I’m in now - CFS Recovery - gives me a community to be a part of, where everyone is at different illness levels and working through things out loud. It also has given me access to coaches and a level of “accountability” that I felt I personally needed, since I got to 75% and stayed at that plateau for a while.
I know that’s not exactly what you meant by individual vs. collective. I guess my point is that we can find the collective in multiple spaces and ways. I personally was struggling with the concepts of internal locus of control vs. external. I tried the route of putting my illness and wellness in the hands of others, over years, and that got me nowhere (and I had and have some excellent, well-meaning doctors). I don’t know that seizing the control and turning it inward is something that can work for everyone, and I agree that this should not at all be seen as a personal failing. I do understand that we patients who are trying to navigate what’s best here are at risk of falling prey to the rugged individualism shit that now seems to be permeating our healthcare systems again, starting in the U.S. with that whack job RFK Jr. I don’t want to contribute to that steaming pile of horseshit. “Seems like you can’t swing a pair of compression stockings around here without hitting a wellness coach hocking some pretty punitive ideas.” Such a great line - spot on.
I think the bottom line is, I’d like to lend hope and certain concepts to anyone who wants them. And I don’t want to get caught in the trap of, “there’s only one right way here.” Or, “this worked for me, so it’ll work for you.” I want to keep covering all the things, for as long as that makes sense, with the goal of helping people at all places within these illnesses find something that speaks to them. Is that too lofty? 🤷♀️🫠
Well 6 weeks later (I'm on LC time...), I can still say, no, not too lofty! Also, for what it's worth, when I mentioned writing about if/how you're building community, I was more just wondering how you're navigating and negotiating relationships, friendships, etc, new and old. I know so many people struggling with how to maintain connections while still coping with limitations, meeting new people (though rarely!) and asking for what we need re: covid safety, energy boundaries, etc. There's just a lot of tension there, and I'm always wondering how other people are living it out!
I'm also going to DM with another questions if that ok!
Ahh, gotcha - I probably should have asked what you meant by community before assuming and crafting a whole response that wasn’t relevant 🤦🏼♀️🙃.
Your relationships/friendships question is a good one, and would probably be a whole post on its own for me. Quick answer: 97% of my friends believed and supported me when I was very sick, and I felt fortunate for that, given some of the stories I’ve heard from folks. Most respected my COVID cautiousness and energy limitations, and in the early days, this meant they visited me on my small deck outside for an hour at most. Eventually as I slowly got better, socializing was the first area I expanded in, because I was an extrovert before the pandemic and the joy that it brings me I knew would be good neurochemically for my brain. I’ve been able to maintain most of my friendships except a few, one of which was a painful loss but not my choice and I had to grieve it and let it go eventually.
Shortish answer for now, but if you’ve got more specific questions about this, do let me know! Here or DM is fine.
Happy 2-year Anniversary, Amy!
I like to read your perspective on things, in general. I may click a couple of links, watch a fun video for entertainment and I'm following your adventures with Ripley. It's like a magazine I'll browse through and come back to, to check some of the more serious links/topics you've found. Interestingly, I've usually picked up on the same headline news as you, whether I've clicked to read it depends on how much bandwidth I have. I never have time/capacity to go through all your links but I usually read your news.
I love that, Victoria - like a magazine you’ll browse and come back to. And I’m not surprised that we tend to flag the same headlines! Great minds…
Been pondering what to write - like you I am nearing recovery. Poking my head outside the disability bubble and engaging with other able bodied communities for the first time in years (Knitting, Meditation) Paying to be part of disability/ME friendly communities for Yoga (Nourish Therapeutic Yoga and Cozy Yoga Club) that offer chat and support as well as a physical practice that widens my horizons. My physical symptoms of ME are receding, but the brain fog is real still. I love your writing and the company of someone steps ahead of me. I don't read the links, too foggy to navigate all those densely packed headings, and too many tabs open of things I want to read straight away and will get too when I'm less foggy. I like your style.
Thank you for reading and commenting, Audrey. I’m on those Nourish Yoga classes with you ☺️. Even though I’m capable of doing regular yoga now, I love the opportunity to lay on my mat and regulate myself mid-week. Shannon is such a soothing presence, right?
I’m with you on the last vestiges of recovery being a bit of brain fog still, especially after a few hours of computer time. Yesterday I did about five hours of computer time total (spread out in 1-2 hour chunks) and my brain felt fried. I’m hopeful that this will get better too as time passes.
I’m considering trying to cut down on the amount of links in each post. Do you think that would make a difference for you? Or maybe I can also format them differently?
I think a different format would help for me - more space or different text between them. Having said that I do have a lot of links opened in my browser that are things that are top of my list to read and linger round for weeks or months.
Would a line break between each heading help? That would add more space visually. And maybe I’ll just call the webinars/podcasts/videos heading “Health Resources” to simplify. I’m open to any other suggestions you have. You would not be the first long COVID/ME person who asked me to make some changes. I took GIFs out almost entirely by request, because one long hauler said the fact that there’s motion was too jarring for her. I want my posts to be accessible, especially to our community!
Like where you are going with this. Have a trial?
??? I’m not sure what you’re saying
Sorry (left an important word. out) - I like your ideas, the break between sounds good, try and see.
Congrats on 2 years!
I do enjoy exploring the links you provide and definitely appreciate the lightheartedness and humor in your articles :)
And totally relate to what you said about nervous system work being a sensitive spot in the chronic illness community. I’ve definitely gotten some stern comments when sharing my story in a Reddit post or two 😅 It’s an important piece to a more encompassing strategy, not the full picture, but an important part nonetheless! It’s not in our heads but when you have a nervous system disorder it’s a no-brainer (pun intended) that this can be a helpful area to focus on.
Your newsletter is one of my favorites here on Substack, keep up the great work!
Totally agree with you on NS work being part of the overall strategy, and that it can’t hurt to work on staying calm and regulated, no matter what. And thank you for your kind words! I think I actually blushed when you said mine was one of your faves 😊. Seems we also have a mutual admiration society going, because I love everything you put out as well!
Not me blushing too 🥰😂 thank you!!
Happy anniversary!
But firstly, AJLT, WTF - it’s been brilliant!!😂 is it just me that loves it then?
I’ve loved this season so much I’ve watching the entire SITC shows …. Again !!
I bloody love the girls, the clothes, the trials and tribulations. I like being far away from the city these days but I like watching this 50+ women in it😍
As someone else in full recovery, and who also understands that way many more of us will have the possibility to recover with the new paradigm over the old one, I of course, love hearing all about your life as it is now. Given the understanding of just how limiting it was prior.
It is true that privilege makes it possible - and our ancestors did not have our level of privilege. With many worldwide still not yet accessing it either. But personally I do feel it’s those of us In it who have gone the distance that will be able to share what we’ve learned and make our offerings accessible to de many others. We’ve got to start somewhere right? And expecting people who have never been through it to be the change…well, look how that’s working out🤷🏼♀️
I know in my own case, I am here, utilising my privilege to help others in the way I wasn’t. But I am but one person wanting to unite with many more of us, to make the biggest global difference. A difference that is coming.
I do also recognise it can feel invalidating to hear that there is something you can do about it. After so many years (usually decades) of suffering. This can be a brutal blow to receive. It’s traumatic in itself.
I look forward to the days when this journey will be more understood. Celebrated even.
Personally, I think I just love to witness you in all your glory. All the messiness of human existence - the highs, the lows, the wins, the celebrations, the lessons, the insights. And I do dabble in the occasional link.
You. Are. Amazing.
And I am so glad you are here 💛
☺️☺️☺️ thank you for always being so supportive here. I’m honored to be in these messy recoveries together!
AJLT…I do hear you! I love the clothes and I love seeing parts of NYC, since I lived there for seven years and now live only an hour away. And I think adapting their various situations to be relevant to women in their 50s is appropriate. I just find some of the writing really forced/silly. That’s my big complaint about it. But of course I watched every minute anyway! lol.
Happy 2 years, Amy!!! I’ve loved following along your journey, and you’ve taught me so much about long COVID. I never knew what “spoonies” meant until you! However you feel inspired to express yourself, I’m here for it all!! ❤️🔥
Ahh thank you, my lovely! So honored that you’re here and grateful for our connection 🫶🏻
I read most of your posts, but don’t click on many of the links; as you know, my disability is lifelong and not long Covid.
I am definitely in it for the cats, and I love Ripley, starting with her name.
Authentic camaraderie is nothing to sneeze 🤧 at! I have spent most of my life trying to get across to people that not only do most people with disabilities have a lot in common (just the politics alone should bring us together), but we also have a lot in common with other disenfranchised people.
For example, how many of us are hate watching AJLT? (Actually, it’s more like disappointment watching for me.) I stopped watching for a few weeks, and then went back to binge it. I even thought the season was over a couple of times—and it just kept going!
WTF was that storyline with Aidan anyway? He was being such an asshole for most of the season, and neither of them ever had a true epiphany about what idiots they were both being.
Carrie’s shoe and clothes thing—which was cute when she was younger now just feels sad to me now.
I will watch the finale, but it feels like a mercy-killing to me at this point.
Sometimes, I get down on myself for frittering away my time on bingeing shows and digital color-by-number, and then I think maybe I have earned a little drama-free period in a drama/trauma filled life…
In it for the cats! Good thing I didn’t do a survey, because I would have left that option out inadvertently!
Understood re: links. I’d say fewer than half are about long COVID, but still, the others may not appeal to you. Or they just take you down a rabbit hole.
OMG, that Aidan nonsense! I’m like, “wait - so it’s okay that he slept with his ex-wife (oopsie!), but Carrie edits a book with her neighbor and all of a sudden she’s not “100%” in?!” Fuck off, guy!
I actually don’t mind that the gals are toned down or changed versions of their former selves (as many who criticize the show say). Who *doesn’t* change by their 50’s-60’s?? But I have to agree with you about Carrie’s clothes and shoes. I think the show could have found a way to realistically shift her style a bit while still keeping it 60yo edgy. And the heels are just impractical and absurd.
Mercy-killing! 🤣🤣 you are hilarious, Teri. That’s the perfect way to describe it 🤭
I will be happy to read whatever you’re throwing down here. The line you put about And Just Like That is something I’ve said every season too. I haven’t started the new/last season m yet but I’m here for it in all its terrible glory.
Thanks for that feedback, Jackie! Let’s circle back after the AJLT finale, so we can love-hate analyze together 🤭
Congrats Amy!
Thank you Amy!