80% is pretty freaking huge! Really excited for you. And the career pivot!
I hear you on being dysregulated but also feel this must be said in the sake of fairness: when the vast majority of your life has been suddenly replaced by pain/malaise/misery/bodily untrustworthiness, roaring rage IS a completely valid response. (Not saying you were or weren't dysregulated too, only you know, but that response 100% tracks! Feelings gotta be felt. AND obviously we can't stay in that rage forever...OR CAN WE...? I kid, don't do that.)
I am eternally curious why brain retraining failed so hard for me. I started back in '08, before I was disabled, just for chronic pain with the John Sarno books. That lead to Alan Gordman, Howard Schubiner, then Lorimer Mosely + David Butler's work...then onto the more common ones now like ANS Rewire and Primal Bust, which is heavily policed across platforms so I've changed the name slightly.
I learned a lot, and I think the pacing and asking for help parts absolutely helped get my body to a better place, but my symptoms simply haven't budged. I always wonder if I'm still doing it wrong or if someday we'll have a better idea who this will and won't work for.
Oh, you are 100% right: the roaring rage and grief are totally understandable and I spent a lot of time feeling all that and processing it in therapy and with friends and Baldy. I could not at that point have had someone merely tell me to regulate my nervous system. It just wouldn’t have worked.
I think there may be a time and place for these programs. Gupta helped me understand a lot, but the daily STOPs were really tedious and I lost interest when I wasn’t improving. I think each of these programs takes a slightly different approach and it’s important to find the right fit. The reason I’m loving CFS Recovery is because the science videos are brief, simple, and a small (though important) part of the actual program. The bulk of it is a community of supportive people with recovery mindsets and group and 1:1 coaching that is really concrete but not tedious. This particular program just works better for the way my brain and life functions.
Unrelated: I applied for financial assistance on a medical bill and after a big rigmarole, got $60 knocked off the bill. It may have taken me more than $60 worth of my time though. But still, it’s something! And it was all because of you and your posts 🙌🏻. Thank you!
Love this reflection and congratulations on getting to 80%! To quote Kira, that is huge. So grateful to have found you here and thank you for the thank you 😊
Finally catching up on my Substack reading and I want to just say 1. You look so beautiful in those last pics and 2. I’m so happy for how far you’ve come! Thank you for sharing the road with us.
I love hearing stories about improvement and recovery! Congrats on 80%, that's a significant win! I can relate to so much of this, especially the amnesia. I wonder if it's a sort of trauma response or our brain's protective way of looking forward, but I totally feel the same way that sometimes I forget how bad the worst of it was.
And heavy on the “normies” not understanding how debilitating some symptoms can be. I started experiencing heightened sensitivities post COVID, particularly to light. Visiting a museum or anywhere with fluorescent lights is a nightmare for me 😅 It makes me dizzy, disoriented, and often leads to migraines. This is something that I fear may be sticking around for the foreseeable future haha.
Thanks for another shout out at the end! Your support is always appreciated 💓
I think you may be right about the amnesia being protective somehow. I just never want to forget the worst of this because it motivates me to keep going and also to protect myself during times of high viral transmission.
Fluorescent lights are really the worst. Even when I wasn’t sick, I hated them. I don’t know who actually *isn’t* bothered by them?! I do wonder if a pair of TheraSpecs (glasses for migraine sufferers) might make museum going bearable for you again? 🤔 Though it would just be better if they retrofitted museums to accommodate all people, right??
I am totally going to check out TheraSpecs because sadly fluorescent lights are everywhereeee but I believe they are slowly being phased out/replaced with LEDs. You're so right though, I don't think anyone likes fluorescent lights and I definitely was not a fan even before.
I’m so glad to hear you’ve made such progress in your recovery! Thank you for sharing your journey and what’s worked for you
Also big nodding along about all the sensitivities. Living in a super dense condo is a sensory nightmare with these conditions.
Tonight a neighbour smoked something and my air quality deteriorated huge. I had to turn up my purifiers (which I’m grateful to have) but then the noise triggered me. Can’t win for losing sometimes!
I think sharing polluted air with neighbors is the worst. You can take measures to drown out noise, but what can you do about the air?? I’m sorry you have to deal with that 😣
So glad to read of your continual recovery! Especially appreciate seeing your journal entries, as I have also kept track of my emotions in this way as I recover in tiny ways from my long covid.
“At the same time, I learned that repressing feelings and emotions doesn’t work; these only get trapped in the body and manifest as symptoms, discomfort, dis-ease.” Wow this so much. I’m sensitive to noise without any apparent illness so I can sympathize with that aspect too. I’m so happy for you and how far you’ve come and I just think you are the best. Thanks for sharing my work. And your cats (the cuddling 🥹)
When you look day to day or week to week, it can be difficult to see above the peaks and troughs, especially when you're going through it in the trenches. But when we reflect over a longer time frame, it's amazing to see how far we've come and how much beauty we've managed to find amongst such suffering. I find it wonderful.
So happy to see your progress, and thanks as always for your work.
It’s so true, Harry. I liken it to when the person you live with loses a lot of weight. You see them every day so you may not notice the difference but people who see them infrequently notice it right away.
Thank you so much for upgrading your subscription - that means a lot to me! Grateful for your comments and support as we come through this together 🙌🏻
It’s wonderful to read of your progress! Something so therapeutic and important about writing things down, sometimes to remember and sometimes just to purge the mind. I went through some stuff and found my notes helped me track symptoms and ideas that would otherwise keep swirling and tormenting. I also enjoyed throwing them out as I emerged from fear. Congratulations on your journey this far 💪 here’s to your continued progress and compassion with self. And thanks for the links ☺️
You’re so right about that, Doc. I haven’t been a big journaler since high school, and those pages were CRINGE. I recently read through one of those journals, took pics of particularly funny pages to send to old friends, and threw it away. No one should have to stumble upon that garbage when I die 🤣. But I’m grateful for what I documented during this illness because it’s helping with my fuzzy amnesia and thus an appreciation for how far I’ve come. Much of it is cringe, but in cathartic ways to me now.
Congratulations!! This is inspirational. And hit me just at the right time - as I've been learning about accepting and letting (negative) emotions out as opposed to trying to change them.
It always warms my heart when your name pops up, Robin. Thank you for reading and for your ongoing support. Sending you grace and love through the ether 💛
I know I have seen improvement in the way my brain works, especially within these last few months. My writing especially has been on fire. Having said that, when I needed to help husband with some financial stuff a few days ago, my brain totally glitched and I had to downshift for the rest of the day.
Recent events have also reactivated my insomnia, which I'm trying to reign back in. Some days are better than others. As if that wasn't enough, the perimenopausal Power Surges are stopping by at random times, throwing off my temperature regulation entirely! I'm looking into what I can do to ease that.
I'm saving this post so I can go through the treasure trove of links at a leisurely pace. Gratitude to you for doing the legwork!
I hear you on the perimenopause showing up randomly! I started HRT about six months ago which has helped a lot. I can also relate to having days of real clarity peppered with foggier ones. The brain keeps trying to get our attention, doesn’t it? Thanks for reading!
80% is pretty freaking huge! Really excited for you. And the career pivot!
I hear you on being dysregulated but also feel this must be said in the sake of fairness: when the vast majority of your life has been suddenly replaced by pain/malaise/misery/bodily untrustworthiness, roaring rage IS a completely valid response. (Not saying you were or weren't dysregulated too, only you know, but that response 100% tracks! Feelings gotta be felt. AND obviously we can't stay in that rage forever...OR CAN WE...? I kid, don't do that.)
I am eternally curious why brain retraining failed so hard for me. I started back in '08, before I was disabled, just for chronic pain with the John Sarno books. That lead to Alan Gordman, Howard Schubiner, then Lorimer Mosely + David Butler's work...then onto the more common ones now like ANS Rewire and Primal Bust, which is heavily policed across platforms so I've changed the name slightly.
I learned a lot, and I think the pacing and asking for help parts absolutely helped get my body to a better place, but my symptoms simply haven't budged. I always wonder if I'm still doing it wrong or if someday we'll have a better idea who this will and won't work for.
Oh, you are 100% right: the roaring rage and grief are totally understandable and I spent a lot of time feeling all that and processing it in therapy and with friends and Baldy. I could not at that point have had someone merely tell me to regulate my nervous system. It just wouldn’t have worked.
I think there may be a time and place for these programs. Gupta helped me understand a lot, but the daily STOPs were really tedious and I lost interest when I wasn’t improving. I think each of these programs takes a slightly different approach and it’s important to find the right fit. The reason I’m loving CFS Recovery is because the science videos are brief, simple, and a small (though important) part of the actual program. The bulk of it is a community of supportive people with recovery mindsets and group and 1:1 coaching that is really concrete but not tedious. This particular program just works better for the way my brain and life functions.
Unrelated: I applied for financial assistance on a medical bill and after a big rigmarole, got $60 knocked off the bill. It may have taken me more than $60 worth of my time though. But still, it’s something! And it was all because of you and your posts 🙌🏻. Thank you!
Oh yay! I just got full hospital forgiveness (again). It was only $42 but it goes forward, so: covered!
Mine goes forward too, which I didn’t know was a thing!
Love this reflection and congratulations on getting to 80%! To quote Kira, that is huge. So grateful to have found you here and thank you for the thank you 😊
Many thanks, Jackie! Hope you are staying cool this summer ☀️
Finally catching up on my Substack reading and I want to just say 1. You look so beautiful in those last pics and 2. I’m so happy for how far you’ve come! Thank you for sharing the road with us.
<blushing> thank you, on both fronts! I hope you keep getting stronger as well. That celebratory NYC toast is in our future 🥂
Thank you and woohoo! 🍾
OMG! Thank you so much for the mention. :)
You betcha!
I love hearing stories about improvement and recovery! Congrats on 80%, that's a significant win! I can relate to so much of this, especially the amnesia. I wonder if it's a sort of trauma response or our brain's protective way of looking forward, but I totally feel the same way that sometimes I forget how bad the worst of it was.
And heavy on the “normies” not understanding how debilitating some symptoms can be. I started experiencing heightened sensitivities post COVID, particularly to light. Visiting a museum or anywhere with fluorescent lights is a nightmare for me 😅 It makes me dizzy, disoriented, and often leads to migraines. This is something that I fear may be sticking around for the foreseeable future haha.
Thanks for another shout out at the end! Your support is always appreciated 💓
I think you may be right about the amnesia being protective somehow. I just never want to forget the worst of this because it motivates me to keep going and also to protect myself during times of high viral transmission.
Fluorescent lights are really the worst. Even when I wasn’t sick, I hated them. I don’t know who actually *isn’t* bothered by them?! I do wonder if a pair of TheraSpecs (glasses for migraine sufferers) might make museum going bearable for you again? 🤔 Though it would just be better if they retrofitted museums to accommodate all people, right??
I am totally going to check out TheraSpecs because sadly fluorescent lights are everywhereeee but I believe they are slowly being phased out/replaced with LEDs. You're so right though, I don't think anyone likes fluorescent lights and I definitely was not a fan even before.
I’m so glad to hear you’ve made such progress in your recovery! Thank you for sharing your journey and what’s worked for you
Also big nodding along about all the sensitivities. Living in a super dense condo is a sensory nightmare with these conditions.
Tonight a neighbour smoked something and my air quality deteriorated huge. I had to turn up my purifiers (which I’m grateful to have) but then the noise triggered me. Can’t win for losing sometimes!
Thank you! ☺️
I think sharing polluted air with neighbors is the worst. You can take measures to drown out noise, but what can you do about the air?? I’m sorry you have to deal with that 😣
So glad to read of your continual recovery! Especially appreciate seeing your journal entries, as I have also kept track of my emotions in this way as I recover in tiny ways from my long covid.
I’m so glad to know this all means something to someone other than me! We WILL get through this 🫶🏻
We damn well better, or there'll be some hell to raise! 😉
😜😎
“At the same time, I learned that repressing feelings and emotions doesn’t work; these only get trapped in the body and manifest as symptoms, discomfort, dis-ease.” Wow this so much. I’m sensitive to noise without any apparent illness so I can sympathize with that aspect too. I’m so happy for you and how far you’ve come and I just think you are the best. Thanks for sharing my work. And your cats (the cuddling 🥹)
Such a good reminder that much of this is applicable to “healthies” too. And thank you, my sweet! 😻
When you look day to day or week to week, it can be difficult to see above the peaks and troughs, especially when you're going through it in the trenches. But when we reflect over a longer time frame, it's amazing to see how far we've come and how much beauty we've managed to find amongst such suffering. I find it wonderful.
So happy to see your progress, and thanks as always for your work.
It’s so true, Harry. I liken it to when the person you live with loses a lot of weight. You see them every day so you may not notice the difference but people who see them infrequently notice it right away.
Thank you so much for upgrading your subscription - that means a lot to me! Grateful for your comments and support as we come through this together 🙌🏻
My friend...this was a great post. I've been a witness to so much of this progress and it's been a delight to see! I'll see you soon! 💕💕💕
Yes you have! Thank you for your constant presence in my life ❤️🔥
It’s wonderful to read of your progress! Something so therapeutic and important about writing things down, sometimes to remember and sometimes just to purge the mind. I went through some stuff and found my notes helped me track symptoms and ideas that would otherwise keep swirling and tormenting. I also enjoyed throwing them out as I emerged from fear. Congratulations on your journey this far 💪 here’s to your continued progress and compassion with self. And thanks for the links ☺️
You’re so right about that, Doc. I haven’t been a big journaler since high school, and those pages were CRINGE. I recently read through one of those journals, took pics of particularly funny pages to send to old friends, and threw it away. No one should have to stumble upon that garbage when I die 🤣. But I’m grateful for what I documented during this illness because it’s helping with my fuzzy amnesia and thus an appreciation for how far I’ve come. Much of it is cringe, but in cathartic ways to me now.
Congratulations!! This is inspirational. And hit me just at the right time - as I've been learning about accepting and letting (negative) emotions out as opposed to trying to change them.
Thank you, Isabel! I’m glad you found something valuable here. I had no idea I wasn’t fully processing feelings until all this happened!
So happy for you, Amy. A long, long journey to this place, and one that still continues, but perhaps now with more hope. Always thinking of you. Robin
It always warms my heart when your name pops up, Robin. Thank you for reading and for your ongoing support. Sending you grace and love through the ether 💛
❤️🩹❤️🩹❤️🩹❤️🩹
So happy to hear about how well you have become!
Thanks so much, Helen! I hope you are still doing well health wise.
Yes, all is going well with me, thanks
Really glad to hear that
I know I have seen improvement in the way my brain works, especially within these last few months. My writing especially has been on fire. Having said that, when I needed to help husband with some financial stuff a few days ago, my brain totally glitched and I had to downshift for the rest of the day.
Recent events have also reactivated my insomnia, which I'm trying to reign back in. Some days are better than others. As if that wasn't enough, the perimenopausal Power Surges are stopping by at random times, throwing off my temperature regulation entirely! I'm looking into what I can do to ease that.
I'm saving this post so I can go through the treasure trove of links at a leisurely pace. Gratitude to you for doing the legwork!
I hear you on the perimenopause showing up randomly! I started HRT about six months ago which has helped a lot. I can also relate to having days of real clarity peppered with foggier ones. The brain keeps trying to get our attention, doesn’t it? Thanks for reading!