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You make no sense.

Thank you for so much for sharing your story! I was just diagnosed with hEDS in April this year, and I am struggling with trying to slow down. I am stubborn because I want to " go, go, go" then I'm just chasing the pain instead of controlling it. I keep dislocating my biceps tendon and gh joint, so I am in physio with isometric exercises. It seems to be helping a bit, but it hasn't yet prevent me from dislocating anything in my shoulder. I need to look into neural science research.

Oh yea, im in pain 24/7. And i just find ways to distract myself from it subconsciously now

Promo>SM

Through A pacing??? 😂

Hey Scott! I spent years mad that my body wouldn’t do the things other people my age could do. Before we knew I had EDS I would cry and ask why it took so much work just to exist. I still ask it… in frustration. I try to use it as a reminder to slow down. Are kids are all grown but I would have loved to have your advice back in the day! Thanks for sharing!

I really needed to hear this! I am getting slapped by EDS about every other day. Thanks for this video!

Yes, to all this. It takes neuromuscular reeducation. It takes a team. It is ever evolving and changing. Complicating things can be that EDS affects the nerves themselves. There can be poor interoception and poor biofeedback regardless of an individual’s determination or effort. I wish us all the best as we build our personal adaptation kits and contribute to the larger body of information on EDS. Take care and thanks for the vid.

Good Idea 👍

this is encouraging - not only have you achieved a physical feat, you will have conquered a confidence to travel milestone as well - congratulations! 🙂

this is so inspiring - please keep sharing your movement journey! 🙂

Fascinating! Thank you for sharing this!

Oh my goodness Scott I feel like this is a huge huge topic for me personally one that I grapple with daily. I’d love to chat with you on this topic I’ve too many thoughts to include in this post. I will say it seems we are in the same place along our journey of living with EDS.

Yes interdisciplinary is absolutely crucial, and yes they all agree it’s important and also you’re exactly correct it appears many providers don’t have the skill set to support success with interdisciplinary work. Leaving us stuck to manage & coordinate in the midst of experiencing the effects of multiple comorbidities simultaneously.

Thank you for sharing your experience parenting with EDS. We need So much more of this. My kids are now 10 and 8, so the struggle looks different now than it did when they were small at it was more physical. I think I spent 5 years in permanent spasms to keep my shoulders from falling out. The pain was unreal and now I’m learning how to undo the damage while trying to parent at the same time. Very difficult

Ha I’m subscribed and would love to take part in this idea 🎉

EDS diagnosis made sense but i cant stop searching for ways to manage fatigue, the pain and how i can continue to live with this invisible condition. I seem to gaslight myself because i look well. The reality is i feel like I am trapped in a nightmare that i have to endure everyday.

Happy to do questionaire. A great idea. My experience, sadly, is not so positive but will continue to strive forward and learn to manage

Thanks for sharing Scott. Good to get an understanding of EDS and its impact. That’s an almighty battle you have had to fight. Glad you are now able to cope with dad taxi duties, they can be a struggle even when you think you have it altogether!

Great to hear you thoughts on this pal 👏🏻. I can relate to this to some degree in terms of hypermobility syndrome, but also very much so in terms of dealing with anxiety disorder - the idea of accepting when you AREN'T ready to apply/faciliate positive changes and not beating yourself up about it has been a game changer. Looking forward to more vlogs! ❤

Full vlog: ruclips.net/video/bCMhOtb7Nhw/видео.html

Full Vlog: ruclips.net/video/bCMhOtb7Nhw/видео.html

As much as this is focused on EDS I think there's so much for anyone to take from this concept of challenging how our own narratives and what ways we can start to nudge ourselves towards better thought processes that fit with the reality of a busy life.

Hey Scott 👋🏻 Great to get an insight into your day!