Thank you for another great post. I am at a place where I need to take a break in actively trying to heal myself. It’s very tempting to try everything that is either thrown at me with good intentions or I find on my own in hopes to move the needle forward. I need to pace myself healing if that makes sense. I’m letting go of “if I don’t do all the things….”
I like your comment “if you met one long hauler you met one long hauler”. Depending on my condition at the time, I either find hope in success stories or triggered by thoughts of what am I doing wrong and why not me. I have felt judged by friends “who knew another long hauler who got better…” or themselves have it, but have had a different experience.
I can so relate to this, Molly. Just last week, I left both therapy and my Gupta coaching group. I feel like we’re all watched pots and we’re never going to boil this way!
I didn’t know about these specific techniques for brain retraining, but I have found personally that a lot of the fundamentals are so true. I have some constant symptoms that can be hallmarks of a terrible disease, and for a couple of years the symptoms owned me, the fear was almost incapacitating, and my mind constantly monitored them, and therefore amplified them like a microscope.
A combination of meditation, time (years) with stable yet unresolved symptoms, and being frontline in the pandemic as a reckoning with mortality that burned out some of my anxiety combined to pull me out of the darkness. I still have the symptoms but I did my diligence with a thorough work up, and I’ve managed to shift my brain’s self surveillance mode elsewhere. “Ignoring” the symptoms has over time diminished them, but it was not easy and it was indeed a kind of suffering before I learned to accept them as part of my new normal. Perhaps I stumbled upon some of the same techniques these folks have organized into videos and programs.
Thanks for sharing your journey here, felt I owed you a validating anecdote right back!
So interesting to hear from a doctor who has gone through something similar (“doctors - they’re just like us!” 🙃). Thank you for the anecdote. Years ago, I was having a seemingly intractable issue in my nether regions that kept testing negative for all the usual suspects (UTI, yeast infection, etc.). I suffered for over six months. A very old GYN kept applying gentian violet, which obviously wasn’t curative but palliative. Then I went to a new GYN who was actually a midwife. She took one look, pushed the paper covering down, and said “eh, you’re just a sensitive redhead. This is nothing.” I was a bit annoyed. But the next day? Totally gone. Never to return, in more than 15 years 🤯.
Not gonna lie - that was like a cat whistle I put in just for you 😹. Also, your IG cat “inspiration porn” is something I will have to go check out right this second.
Thank you for this, Amy! You had to have poured a lot of time in, and it is so so useful. I too am convinced that the solutions are multi modal and probably not pharmaceutical. Though I recognize a lot of the names, some are new to me. Funny, I took a breathing course with Jackie Baxter, but have not listen to her podcast! I still want to look further into brain retraining, so that is helpful. My Cranial Sacral therapist at one point Hinted, I was kind of like a squirrel trying too many things, but I am not certain that she was right about that. At this point, I am no longer trying stuff one at a time and I am following my instincts and trying to lose the fear. Many of my symptoms are from dysautonomia (VAX injury.)
Ha! I’ve been told that too, about trying too many things at once. I am easing away from that carpet-bomb approach. I’m kind of over it! I think when we hyperfocus on a thing, it becomes all-consuming (see my story in the comment above to Dr. Ryan about my nether regions! Lol). Good luck with everything. Do check out Lindsay Vine if you need help picking the right brain retraining program.
Thanks for this! I’ve looked into some of these programs but haven’t taken the leap yet. I’ve found Stoic Philosophy and polyvagal theory to be immensely helpful to me and some of what you described here contains aspects of those. Looking forward to part 2!
That was great to read. You should definitely cross post. I feel like your approach to illness through stoicism aligns well with both Bernhard’s and Fennell’s books (from my post).
Thanks for your insights, Colleen. I definitely think the pre-pandemic ME patients need to be studied alongside LC patients for piecing apart the key differences in these diseases. I’m also very curious, being one of the long haulers who has an ME diagnosis and presentation of disease, whether folks like me truly have two separate diseases. Here’s hoping we get some answers.
Thank you for another great post. I am at a place where I need to take a break in actively trying to heal myself. It’s very tempting to try everything that is either thrown at me with good intentions or I find on my own in hopes to move the needle forward. I need to pace myself healing if that makes sense. I’m letting go of “if I don’t do all the things….”
I like your comment “if you met one long hauler you met one long hauler”. Depending on my condition at the time, I either find hope in success stories or triggered by thoughts of what am I doing wrong and why not me. I have felt judged by friends “who knew another long hauler who got better…” or themselves have it, but have had a different experience.
I can so relate to this, Molly. Just last week, I left both therapy and my Gupta coaching group. I feel like we’re all watched pots and we’re never going to boil this way!
I didn’t know about these specific techniques for brain retraining, but I have found personally that a lot of the fundamentals are so true. I have some constant symptoms that can be hallmarks of a terrible disease, and for a couple of years the symptoms owned me, the fear was almost incapacitating, and my mind constantly monitored them, and therefore amplified them like a microscope.
A combination of meditation, time (years) with stable yet unresolved symptoms, and being frontline in the pandemic as a reckoning with mortality that burned out some of my anxiety combined to pull me out of the darkness. I still have the symptoms but I did my diligence with a thorough work up, and I’ve managed to shift my brain’s self surveillance mode elsewhere. “Ignoring” the symptoms has over time diminished them, but it was not easy and it was indeed a kind of suffering before I learned to accept them as part of my new normal. Perhaps I stumbled upon some of the same techniques these folks have organized into videos and programs.
Thanks for sharing your journey here, felt I owed you a validating anecdote right back!
So interesting to hear from a doctor who has gone through something similar (“doctors - they’re just like us!” 🙃). Thank you for the anecdote. Years ago, I was having a seemingly intractable issue in my nether regions that kept testing negative for all the usual suspects (UTI, yeast infection, etc.). I suffered for over six months. A very old GYN kept applying gentian violet, which obviously wasn’t curative but palliative. Then I went to a new GYN who was actually a midwife. She took one look, pushed the paper covering down, and said “eh, you’re just a sensitive redhead. This is nothing.” I was a bit annoyed. But the next day? Totally gone. Never to return, in more than 15 years 🤯.
The power of the mind is pretty incredible.
Thicken Nugget 🥹🥹🥹 I found a cat with Dwarfism on instagram, his name is Francis and we are obsessed with him. Cats just always make the day better
Not gonna lie - that was like a cat whistle I put in just for you 😹. Also, your IG cat “inspiration porn” is something I will have to go check out right this second.
I have never felt so honored in my life
Need Francis’ handle! Can’t find him 🤦🏼♀️
@ francisandmaggie ENJOY lol
Thank you for this, Amy! You had to have poured a lot of time in, and it is so so useful. I too am convinced that the solutions are multi modal and probably not pharmaceutical. Though I recognize a lot of the names, some are new to me. Funny, I took a breathing course with Jackie Baxter, but have not listen to her podcast! I still want to look further into brain retraining, so that is helpful. My Cranial Sacral therapist at one point Hinted, I was kind of like a squirrel trying too many things, but I am not certain that she was right about that. At this point, I am no longer trying stuff one at a time and I am following my instincts and trying to lose the fear. Many of my symptoms are from dysautonomia (VAX injury.)
Ha! I’ve been told that too, about trying too many things at once. I am easing away from that carpet-bomb approach. I’m kind of over it! I think when we hyperfocus on a thing, it becomes all-consuming (see my story in the comment above to Dr. Ryan about my nether regions! Lol). Good luck with everything. Do check out Lindsay Vine if you need help picking the right brain retraining program.
Thanks for this! I’ve looked into some of these programs but haven’t taken the leap yet. I’ve found Stoic Philosophy and polyvagal theory to be immensely helpful to me and some of what you described here contains aspects of those. Looking forward to part 2!
also, I’ve never heard of Stoic Philosophy, so now I’m headed to look that up. Thanks!
I wrote an essay on how it’s helped me with my ME/CFS if you’re interested (and I should probably cross post it on my Substack too!) https://classicalwisdom.com/philosophy/stoicism/when-illness-becomes-the-way-stoicism-as-a-way-through-chronic-illness-and-disability/
That was great to read. You should definitely cross post. I feel like your approach to illness through stoicism aligns well with both Bernhard’s and Fennell’s books (from my post).
Thank you! I definitely noticed some similarities of approaches.
Thanks Lis! Part 2 is out today and includes Polyvagal theory 😌
Thank you for the shout out about my article. Every group of patients needs recognition, respect & research.
Thanks for your insights, Colleen. I definitely think the pre-pandemic ME patients need to be studied alongside LC patients for piecing apart the key differences in these diseases. I’m also very curious, being one of the long haulers who has an ME diagnosis and presentation of disease, whether folks like me truly have two separate diseases. Here’s hoping we get some answers.