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.
@white_isnt_a_race23385 ай бұрын
Oh yea, im in pain 24/7. And i just find ways to distract myself from it subconsciously now
@georgecopeland54186 ай бұрын
Promo>SM
@ScottTorrance7 ай бұрын
Through A pacing??? 😂
@nanerlea7 ай бұрын
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!
@ScottTorrance7 ай бұрын
Thanks Amanda, that prompts an interesting question- what advice would you give your younger (before EDS self)?
@nanerlea7 ай бұрын
@@ScottTorrance I think I would tell myself that I don’t have to prove to anyone that I am strong. And to be kinder to my body as well as my mind.
@ScottTorrance7 ай бұрын
@@nanerlea Brilliant! The question is would your younger self have listened?
@nanerlea7 ай бұрын
@@ScottTorrance not really. 🥴 I am so hardheaded when it comes to doing things by myself and proving to everyone else that I am a strong person. My kids listen to me though. I am saving them tons of heartache and pain.
@nanerlea7 ай бұрын
I really needed to hear this! I am getting slapped by EDS about every other day. Thanks for this video!
@ScottTorrance7 ай бұрын
Thanks Amanda, it isn't easy but you just have to take it one day at time ❤
@mossTeigh8 ай бұрын
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.
@ScottTorrance8 ай бұрын
Yeah it is an interesting journey to be on, lots to learn
@meri_soturi8 ай бұрын
Good Idea 👍
@ScottTorrance8 ай бұрын
It's all about fitting it in to my day and not adding any extra stress
@meri_soturi8 ай бұрын
this is encouraging - not only have you achieved a physical feat, you will have conquered a confidence to travel milestone as well - congratulations! 🙂
@ScottTorrance8 ай бұрын
Thanks very much. Yes it was a very positive experience all round!
@meri_soturi8 ай бұрын
this is so inspiring - please keep sharing your movement journey! 🙂
@ScottTorrance8 ай бұрын
Thank you! Will do!
@katherineperrymusic8 ай бұрын
Fascinating! Thank you for sharing this!
@ScottTorrance8 ай бұрын
Thanks 😃
@bethmkee8 ай бұрын
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.
@ScottTorrance8 ай бұрын
I've dropped you a DM on Instagram and we can try and get a call in the diary 👍
@bethmkee8 ай бұрын
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.
@ScottTorrance8 ай бұрын
Yeah it is a full.time job trying to get the adults to talk nicely to each other!
@TArk143-d2v8 ай бұрын
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
@ScottTorrance8 ай бұрын
Yeah it really is brutal! My kids are similar ages to yours and wow what a difference it makes. Still challenging but so much more manageable.
@TArk143-d2v8 ай бұрын
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.
@ScottTorrance8 ай бұрын
Oh I feel you, it is not easy. You will go through periods where the searching for answers is what you need and is the right thing but it can also catch you in spiralling loop.
@Lionessliving8 ай бұрын
Happy to do questionaire. A great idea. My experience, sadly, is not so positive but will continue to strive forward and learn to manage
@ScottTorrance8 ай бұрын
Fantastic, and there is no need to feel you have to put a positive spin on things. Sometimes it is just rubbish and we have to sit with that. It's the reality of life with EDS, I've been there!
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!
@ScottTorrance8 ай бұрын
Thanks mate, yeah it has been a struggle but the future is looking brighter!
@susykmusic8 ай бұрын
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! ❤
@ScottTorrance8 ай бұрын
Full vlog: kzbin.info/www/bejne/mHSwmYKql5yBntk
@ScottTorrance8 ай бұрын
Full Vlog: kzbin.info/www/bejne/mHSwmYKql5yBntk
@jeremyklayman76248 ай бұрын
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.
@ScottTorrance8 ай бұрын
Yeah it is something I toy around with. There are undoubtedly lessons to be learned from the extremes of a chronically ill life that apply to a regular life. Sometimes it is only going to the extreme and when the stakes are higher that it forces you to think about these things and make the changes.
@theauthoritativecoach8 ай бұрын
Hey Scott 👋🏻 Great to get an insight into your day!