I love this post! So reflective and full of humour. It reminded me that in the middle of a crash last year I had to order new underwear on Amazon when my washing had piled up. I remember thinking old me would beat myself up for not putting on a wash, but new me knows how to stick to my baseline.
Getting caught up on your posts after just subscribing. I’d be interested to hear - if you know - what/why/how it finally clicked for you. I’ve never been as bad at anything as I am at pacing...
I feel that last statement of yours to my core. It’s astonishing how good we have been at achieving things in life but how hard it is to implement pacing consistently.
I’d say it was two things: 1) the therapist referenced in my post - I had worked with her for two years by the time she told me about her pregnancy and impending year-long leave. In hindsight I think her announcement made me subconsciously say to myself “you better GET this shit she’s been trying to teach you, now while you still have the chance.” I had the distinct feeling that we were ending our therapeutic relationship for good, because I was a private pay patient quickly running out of the ability to keep paying full price. (I’ve also since found a very good NY-based therapist who takes my insurance).
And 2) the book Decode Your Fatigue by Alex Howard. Specifically he had a conversation with his uncle when he was 18 and not recovering from ME/CFS that pushed him to focus entirely on his recovery. Just the way it was written hit home for me. I read it first on my Kindle but then recently bought the paperback so I could re-read it and mark it up. I highly recommend it.
Thank you so much for taking the time/energy to share all that. Very helpful And I've ordered the book. I'm currently attempting to recover from an endoscopy/colonoscopy at Mt. Sinai yesterday and fighting the call of a second nap...
I wonder if you would be interested in connecting on this and perhaps being pacing accountability partners? I don't know what I mean exactly, but it sure would be helpful to talk with someone who knows the exquisite torment...
Ohhh, I know that exact recovery. Had mine a year into my haul. What symptoms are flaring?
And accountability partner...I’m intrigued! I’ll send you an email? We’ll just have to make sure our accountability doesn’t become too overachievery 🤓. That’s also a problem I’m having.
Ok, ok - no sticker charts! 🌟 And seriously, no pressure at all to connect. I’ve just felt so much resonance in your writing and think we have similar sensibilities/experiences. Thought it might be helpful to connect. Send me an email if it feels right to you: rebajoco@gmail.com
I’m fading fast. Fatigue/cardiac/cognitive flaring. Done for the day...
I’ll definitely email you by the weekend. Baldy has *his* colonoscopy tomorrow. I fasted today in solidarity (also: autophagy). I’m starving! Hope you get some good rest and feel better tomorrow. Talk soon.
I’m so appreciative of this post and the included link on pacing research. It’s interesting to read that researchers on this are like, “What do we even MEAN by “pacing”? Can we clarify, so that we’re actually helping people with chronic conditions and not actually making it worse?” It’s almost like there’s been a concerted centuries-long campaign to separate humans from an intuitive connection to the cyclical rhythms of activity and rest, to the point that we have to re-study it to figure it back out.
Glad we at least have the pop culture concept of “spoons” to give us a way to talk about this in the meantime. And the mantra of (I’m paraphrasing), “If I have clean underwear, I’ve done enough for the day.”
So very well-stated, Ryan, regarding the history of cyclical rhythms of activity and rest. How did we get here?! (Oh, right - industrialization and capitalism, check ✅).
You had me at clean underwear!! Pacing is SO hard to learn and master. How to put my own overly busy critic to bed? It's a work in progress. Appreciate the details on your process.
It’s a beast! Trying to reframe the thought that I’ve lost three years to my inability to truly understand and engage in pacing effectively. I’m just glad it’s clicking now!
I love this post! So reflective and full of humour. It reminded me that in the middle of a crash last year I had to order new underwear on Amazon when my washing had piled up. I remember thinking old me would beat myself up for not putting on a wash, but new me knows how to stick to my baseline.
That’s poignantly funny, Naïma! I’d consider that a pacing victory, for sure 🤓
As my mama says, “Always wear clean underwear. You never know.” So a small stock sounds right 👌🏼
Getting caught up on your posts after just subscribing. I’d be interested to hear - if you know - what/why/how it finally clicked for you. I’ve never been as bad at anything as I am at pacing...
I feel that last statement of yours to my core. It’s astonishing how good we have been at achieving things in life but how hard it is to implement pacing consistently.
I’d say it was two things: 1) the therapist referenced in my post - I had worked with her for two years by the time she told me about her pregnancy and impending year-long leave. In hindsight I think her announcement made me subconsciously say to myself “you better GET this shit she’s been trying to teach you, now while you still have the chance.” I had the distinct feeling that we were ending our therapeutic relationship for good, because I was a private pay patient quickly running out of the ability to keep paying full price. (I’ve also since found a very good NY-based therapist who takes my insurance).
And 2) the book Decode Your Fatigue by Alex Howard. Specifically he had a conversation with his uncle when he was 18 and not recovering from ME/CFS that pushed him to focus entirely on his recovery. Just the way it was written hit home for me. I read it first on my Kindle but then recently bought the paperback so I could re-read it and mark it up. I highly recommend it.
Thank you so much for taking the time/energy to share all that. Very helpful And I've ordered the book. I'm currently attempting to recover from an endoscopy/colonoscopy at Mt. Sinai yesterday and fighting the call of a second nap...
I wonder if you would be interested in connecting on this and perhaps being pacing accountability partners? I don't know what I mean exactly, but it sure would be helpful to talk with someone who knows the exquisite torment...
Ohhh, I know that exact recovery. Had mine a year into my haul. What symptoms are flaring?
And accountability partner...I’m intrigued! I’ll send you an email? We’ll just have to make sure our accountability doesn’t become too overachievery 🤓. That’s also a problem I’m having.
Ok, ok - no sticker charts! 🌟 And seriously, no pressure at all to connect. I’ve just felt so much resonance in your writing and think we have similar sensibilities/experiences. Thought it might be helpful to connect. Send me an email if it feels right to you: rebajoco@gmail.com
I’m fading fast. Fatigue/cardiac/cognitive flaring. Done for the day...
I’ll definitely email you by the weekend. Baldy has *his* colonoscopy tomorrow. I fasted today in solidarity (also: autophagy). I’m starving! Hope you get some good rest and feel better tomorrow. Talk soon.
I’m so appreciative of this post and the included link on pacing research. It’s interesting to read that researchers on this are like, “What do we even MEAN by “pacing”? Can we clarify, so that we’re actually helping people with chronic conditions and not actually making it worse?” It’s almost like there’s been a concerted centuries-long campaign to separate humans from an intuitive connection to the cyclical rhythms of activity and rest, to the point that we have to re-study it to figure it back out.
Glad we at least have the pop culture concept of “spoons” to give us a way to talk about this in the meantime. And the mantra of (I’m paraphrasing), “If I have clean underwear, I’ve done enough for the day.”
So very well-stated, Ryan, regarding the history of cyclical rhythms of activity and rest. How did we get here?! (Oh, right - industrialization and capitalism, check ✅).
❤️
You had me at clean underwear!! Pacing is SO hard to learn and master. How to put my own overly busy critic to bed? It's a work in progress. Appreciate the details on your process.
It’s a beast! Trying to reframe the thought that I’ve lost three years to my inability to truly understand and engage in pacing effectively. I’m just glad it’s clicking now!