Nice to hear about your future plans in social work, Amy, all in your own timeline. And I love the crazy squirrel at the end! I have a sort of squirrel phobia (I hate their beady eyes) so I was glad your windows seem secure! ❤️
Thanks Paula! And yeah, that squirrel was bonkers. And then I stood on my couch to get a look at him to make sure he wasn’t rabid and he was just sitting in the grass, eating things and looking up at me and the two shorthairs like, “what?! nothing to see here!” 🤣🤣🤣
And yes, therapy. It would be my number one item. When I got sick in 1994, the first 4 months were a blur of tests and investigations into possible ailments. I was well connected at Stanford, working at the medical center doing research with tons of doctor friends.
Then one day all the buzz and scrambling for an answer that might save or soothe just stopped. Old doctor friends started whispering behind my back and my personal physician slapped on the ME/CFS label and it was clear that all investigation was over and a consensus had been reached that additional resources were not to be wasted upon me.
If I was going to stick around and fight this, I needed help. Help to reimagine where I would find self-worth and help to find a path through all the major stressors that I hadn't imagined were just over the horizon like denials of disability and being un-homed for the next three years.
The credit card company thought they could hound something out of me that I simply did not have and they had been heartless so I found a great therapist who specialized in chronic disease, ran up a card balance of several thousand dollars and then effectively changed my number by losing my apartment. I still don't feel the slightest amount of guilt after enduring dozens of daily calls, some at 7 am, some at 10 pm, demanding I conjure up $15 a week that just didn't exist.
Re-imagining where I would find self-worth was deeply tied to pacing. Like many of the other ME patients I came to know, many/most? were pretty driven people.
A significant part of my go, go, go was a genuine enjoyment of exploring both the world and my limits. There was also a significant aspect of who I had been that needed the validation that came with being good at this or unique with that other thing and none of that part of me played well with pacing.
I hadn't figured out yet that I had value, AND that I could experience joy, just by being me. In fact, from where I sit today, it's the genuinely being me part that brings a level of joy that I had never experienced.
I love this comment so much, Shayne. Not the part about being ignored/ridiculed by docs and unhoused, of course. But the part about not needing to be so driven to be considered admirable or lovable. I drove myself so hard that I ignored and pushed through ten years of warning signs from my body before I got long COVID. I’ve only just had that epiphany within the last few days 🤯
Thank you so much for this, and all your entertaining, hopeful posts over the past year. Your writing and resources have had a significant influence on my own changing (ie improving!) strategies for living better and more gently with POTS/LC. It’s so nice to read of your longer-term plans RE: social work, and I can’t wait to hear about the (whispers it) something-possibly-approaching-exercise — on my best days, it feels as if that level of capacity is drawing slowly but tantalisingly close ( I’m softly hoping I might also reach it in the coming months). It’s been really heartening to hear about the improvements you’ve experienced, and also what *hasn’t* worked, in the midst of navigating my own path through similar challenges. Also you write so very well!
Thank you, Marion! Glad you’re here. We need to lean on each other.
Part of what I’ve been learning is that the fear of PEM keeps us from pushing our limits a bit. It’s been super helpful for me to focus on the enjoyment of going past what I thought my limits were rather than worrying about it, which just sends our brain the message that we should stay fearful, and ramping symptoms up. It becomes a vicious cycle.
I find it particularly helpful to be with a friend when I push my limits. Like, going for a longer walk than I might have tried otherwise, but we’re gabbing and I’m happy so I’m distracted. No PEM! It’s been great.
Pushing limits with a friend! That's a lovely idea. It's definitely surprised me how big of a role brain/body retraining plays in recovery, and how differently the same activity can impact when it feels forced or scary vs when it feels fun. Almost as if the central nervous system is innately wired for joy... (who'd've thunk it?!)
Thanks Nicole! There’s actually a good bit of consistency in tools amongst those of us recovering/recovered, which I’ve noticed by watching Raelan’s videos. It’s exciting!
Hi Amy, thanks for sharing! And thanks for that yawning video. It's been months since I watched silly things on the internet and I loved it. Loving the cat content, too.
It's really striking how similar the recovery tools end up being. It definitely took me some time to get the toolkit together, but it looks really similar to yours. Re breathwork, I also like using resonant breathing, especially for walking or whenever I do a physical activity that may make my heart rate go higher. I breathe in 4 seconds, out 4 seconds, and that calms my heart.
Thanks also for the link to Shannon's yoga site, I did the ME class yesterday and I enjoyed it very much. It's pretty much the level of movement I can do right now :)
Thank you for reading and using up precious spoons to write a comment. I’m so glad you enjoyed Shannon’s class! I love how accessible she is to all levels.
WE CAN HAVE CAT VIDEOS NOW! I love this railing thing they have to run along my cats would die for this. also you as a little ghost kid awwww hahaha
I think you would make an excellent therapist - you have been to me :)
And hear hear on the inability to regulate your nervous system/tired and wired feeling. The only time I've successfully napped is at work, in the car, in the warmth, with the sunshade, under a tree, noise canceling headphones creating this feedback loop of breathing and outdoor sounds. Am I a cat??
I've found that recognizing the eight year old in ourselves and others makes empathy easier to come by. My therapist asked me what I would want to share with eight year old me, knowing what I was going to go through later in life.
"Be nice to you." And "Things are going to get rough at times but have faith in yourself, it's going to be Okay" were the two things that I think I needed to know.
Hi Amy - LC person here. I'm in Rochester, NY and was wondering if you are Upstate or The City. I ask because there are zero LC clinics in Upstate or Western NY that I've been able to find. I was wondering if any of your connections have any information on that. Thanks!
Temper your expectations though. The general consensus is that these clinics aren’t super helpful. They don’t tend to keep up with the latest research (you would think they would). I left my local one about six months after I started when I realized the docs I had found on my own were way more knowledgeable. But maybe that’s changing? Might be worth a try.
Nice to hear about your future plans in social work, Amy, all in your own timeline. And I love the crazy squirrel at the end! I have a sort of squirrel phobia (I hate their beady eyes) so I was glad your windows seem secure! ❤️
Thanks Paula! And yeah, that squirrel was bonkers. And then I stood on my couch to get a look at him to make sure he wasn’t rabid and he was just sitting in the grass, eating things and looking up at me and the two shorthairs like, “what?! nothing to see here!” 🤣🤣🤣
I like “Art of Pacing”.
and a messy art at that, right?
And yes, therapy. It would be my number one item. When I got sick in 1994, the first 4 months were a blur of tests and investigations into possible ailments. I was well connected at Stanford, working at the medical center doing research with tons of doctor friends.
Then one day all the buzz and scrambling for an answer that might save or soothe just stopped. Old doctor friends started whispering behind my back and my personal physician slapped on the ME/CFS label and it was clear that all investigation was over and a consensus had been reached that additional resources were not to be wasted upon me.
If I was going to stick around and fight this, I needed help. Help to reimagine where I would find self-worth and help to find a path through all the major stressors that I hadn't imagined were just over the horizon like denials of disability and being un-homed for the next three years.
The credit card company thought they could hound something out of me that I simply did not have and they had been heartless so I found a great therapist who specialized in chronic disease, ran up a card balance of several thousand dollars and then effectively changed my number by losing my apartment. I still don't feel the slightest amount of guilt after enduring dozens of daily calls, some at 7 am, some at 10 pm, demanding I conjure up $15 a week that just didn't exist.
Re-imagining where I would find self-worth was deeply tied to pacing. Like many of the other ME patients I came to know, many/most? were pretty driven people.
A significant part of my go, go, go was a genuine enjoyment of exploring both the world and my limits. There was also a significant aspect of who I had been that needed the validation that came with being good at this or unique with that other thing and none of that part of me played well with pacing.
I hadn't figured out yet that I had value, AND that I could experience joy, just by being me. In fact, from where I sit today, it's the genuinely being me part that brings a level of joy that I had never experienced.
I love this comment so much, Shayne. Not the part about being ignored/ridiculed by docs and unhoused, of course. But the part about not needing to be so driven to be considered admirable or lovable. I drove myself so hard that I ignored and pushed through ten years of warning signs from my body before I got long COVID. I’ve only just had that epiphany within the last few days 🤯
💕
Thank you so much for this, and all your entertaining, hopeful posts over the past year. Your writing and resources have had a significant influence on my own changing (ie improving!) strategies for living better and more gently with POTS/LC. It’s so nice to read of your longer-term plans RE: social work, and I can’t wait to hear about the (whispers it) something-possibly-approaching-exercise — on my best days, it feels as if that level of capacity is drawing slowly but tantalisingly close ( I’m softly hoping I might also reach it in the coming months). It’s been really heartening to hear about the improvements you’ve experienced, and also what *hasn’t* worked, in the midst of navigating my own path through similar challenges. Also you write so very well!
Thank you, Marion! Glad you’re here. We need to lean on each other.
Part of what I’ve been learning is that the fear of PEM keeps us from pushing our limits a bit. It’s been super helpful for me to focus on the enjoyment of going past what I thought my limits were rather than worrying about it, which just sends our brain the message that we should stay fearful, and ramping symptoms up. It becomes a vicious cycle.
I find it particularly helpful to be with a friend when I push my limits. Like, going for a longer walk than I might have tried otherwise, but we’re gabbing and I’m happy so I’m distracted. No PEM! It’s been great.
Pushing limits with a friend! That's a lovely idea. It's definitely surprised me how big of a role brain/body retraining plays in recovery, and how differently the same activity can impact when it feels forced or scary vs when it feels fun. Almost as if the central nervous system is innately wired for joy... (who'd've thunk it?!)
Exactly! I do wish I had learned to dial down my fear two years ago. But, we learn when we learn I guess.
Major overlap in tools here. Thanks for sharing Amy!
Thanks Nicole! There’s actually a good bit of consistency in tools amongst those of us recovering/recovered, which I’ve noticed by watching Raelan’s videos. It’s exciting!
I’ve noticed that too. It really is exciting! :)
Hi Amy, thanks for sharing! And thanks for that yawning video. It's been months since I watched silly things on the internet and I loved it. Loving the cat content, too.
It's really striking how similar the recovery tools end up being. It definitely took me some time to get the toolkit together, but it looks really similar to yours. Re breathwork, I also like using resonant breathing, especially for walking or whenever I do a physical activity that may make my heart rate go higher. I breathe in 4 seconds, out 4 seconds, and that calms my heart.
Thanks also for the link to Shannon's yoga site, I did the ME class yesterday and I enjoyed it very much. It's pretty much the level of movement I can do right now :)
Thank you for reading and using up precious spoons to write a comment. I’m so glad you enjoyed Shannon’s class! I love how accessible she is to all levels.
Also: I'm right there with you with stretchy pants!
WE CAN HAVE CAT VIDEOS NOW! I love this railing thing they have to run along my cats would die for this. also you as a little ghost kid awwww hahaha
I think you would make an excellent therapist - you have been to me :)
And hear hear on the inability to regulate your nervous system/tired and wired feeling. The only time I've successfully napped is at work, in the car, in the warmth, with the sunshade, under a tree, noise canceling headphones creating this feedback loop of breathing and outdoor sounds. Am I a cat??
This house we moved into in 2019 is a cat’s dream. Ledges and windows abound! And plenty of birds, chipmunks, squirrels, and other wildlife to view.
Aww, thanks for the therapist compliment 🥹.
Thank you so much, Amy! My doctor predicted that the first one in Western New York would be in Buffalo. Signing up first thing tomorrow.
Whiter than the wall and so adorable it hurts!
Haha, thanks 😊
I've found that recognizing the eight year old in ourselves and others makes empathy easier to come by. My therapist asked me what I would want to share with eight year old me, knowing what I was going to go through later in life.
"Be nice to you." And "Things are going to get rough at times but have faith in yourself, it's going to be Okay" were the two things that I think I needed to know.
Hi Amy - LC person here. I'm in Rochester, NY and was wondering if you are Upstate or The City. I ask because there are zero LC clinics in Upstate or Western NY that I've been able to find. I was wondering if any of your connections have any information on that. Thanks!
Hi Janette - thanks for reading. For years, the closest clinic to you would have been Albany, but I just found this: https://www.ubmd.com/practice-locations/long-covid-recovery-center.html
Temper your expectations though. The general consensus is that these clinics aren’t super helpful. They don’t tend to keep up with the latest research (you would think they would). I left my local one about six months after I started when I realized the docs I had found on my own were way more knowledgeable. But maybe that’s changing? Might be worth a try.