12 Comments

Crip time, that's a new one to me, but totally get it. So good you've done the intensive on your own terms, those of us with ME/CFS really do have to live in a different timescale x

Expand full comment

When I first heard the term Crip time I was so happy to finally have a name for how differently we experience time! That, and temporal accommodations, have really helped me set clear boundaries.

Expand full comment

This gives me hope. Thank you 🙏🏻❤️🙏🏻

Expand full comment

Ps .. the vagus nerve heart detail!!

Expand full comment

Thank you! I’m glad my writing gives you hope, and I just finished signing the vagus nerve piece this afternoon! After clean up I’ll write about the whole process.

Expand full comment

I am looking forward to that!!!

Expand full comment

Thank you for this thoughtful, reflective piece. You were so generous & precise in sharing your experience here & I saw myself in a lot of it. I suffered a head injury, post-concussion syndrome, & a myriad of other physical, emotional & cognitive ails post a motor vehicle accident 6yrs ago now. My nervous system crashed hard & it has been a slow, intentional recovery ever since. I So appreciate what you had to say about going at your own pace & putting your own health first. Also, the Polyvagal theory references!!! Deb Dana & Stephen Porges-😀Oh, and your needle point of the heart is exquisite.

Expand full comment

Thank you so much! I do think it’s important to talk about cognitive symptoms because so many people don’t understand them.

Expand full comment

I’ve never heard of the ventral vagal theory - finding visceral glimmers of calm - but I love it and know it’ll be something I chew on for a bit. 🩷

Expand full comment

If you want the neuroscience approach to polyvagal theory, look up Stephen Porges’ papers. He developed the theory. Deb Dana’s approach is softer and more based in talk therapy, and there’s a fantastic book by Stanley Rosenberg with all sorts of physical therapy exercises to do too.

Expand full comment

Just blown away by your embroidery, as always. I’ve really enjoyed Esmé’s classes, I’m also hoping to take more of them as I figure out this pacing thing.

Expand full comment

Thank you! I’ve been reading Esmé for years but haven’t taken any of her classes. Maybe in a few months I’ll delve into those! In the meantime I’ll finish The Visceral Self on my own timeline and then pay some attention to my own projects.

Expand full comment