Georgina, your advice for hEDS-havers to get a PopSocket changed my life! Thanks for sharing 'rest not quit' too. I recently came across the 'slow living' mindset, i.e. accepting yourself as good enough just for Being, not Doing (although with chronic pain Being/Resting can be, like you say, suffering). I've started asking myself what my cavewoman ancestor would do in my situation - she might rest and sulk but probably wouldn't feel guilty about her pain or unproductivity. I hope your situation gets better and that you can find peace in the place you're in
I struggle with my caregiver-situation, too 🤗. But it's my "fault", because I can't commit to the situation (strangers in my home, different caregivers in alteration, etc.). Thank you for putting things into words. Yes, resting feels like suffering. No fun at all.
I know exactly what you mean by that! And how there’s no privacy or rest time! Last week I spent an hour teaching one how to fold two socks together & explaining why I don’t put the dirty mop head on the kitchen counter or hang my clothes up inside out 🥲
@@GeorginasJourneyYes, you know what I mean 🙈. What a nightmare.... I could freak out reading your post. And then it's more stressfull than supportive 🤦🏻♀️😬. In have no solution for that. Actually my "solution" is living my rules and doing what's possible. Nobody needs to shower more than once a week or have warm meals 🥴... I cannot laugh anymore, but sarcasm is crucial.
The USA is not strict about carers. Mine is a practicing alcoholic. In the USA you can hire and interview your own caregivers or find a company to hire them. So I have a company find them.
(Dates as I know things get confusing- the wedding I mentioned was 2022 & the ambulance situation was May 2024)
I appreciate you using your precious energy to share this important message! Hope you find good caregivers soon!
Thank you so much!
Georgina, your advice for hEDS-havers to get a PopSocket changed my life! Thanks for sharing 'rest not quit' too. I recently came across the 'slow living' mindset, i.e. accepting yourself as good enough just for Being, not Doing (although with chronic pain Being/Resting can be, like you say, suffering). I've started asking myself what my cavewoman ancestor would do in my situation - she might rest and sulk but probably wouldn't feel guilty about her pain or unproductivity. I hope your situation gets better and that you can find peace in the place you're in
Ah Niamh thank you for sharing all this! I love that sentiment of the cavewomen ancestors so much! Great thinking! ☺️❤️🩹
Wow your so beautiful hope you can get better one day when solutions are found and can let your light be seen more in the world. 🥴
Thank you so much!
Yes Georgina u've kept me company for the last 12 minutes
Haha, I’m glad 😊
I struggle with my caregiver-situation, too 🤗. But it's my "fault", because I can't commit to the situation (strangers in my home, different caregivers in alteration, etc.).
Thank you for putting things into words. Yes, resting feels like suffering. No fun at all.
I know exactly what you mean by that! And how there’s no privacy or rest time! Last week I spent an hour teaching one how to fold two socks together & explaining why I don’t put the dirty mop head on the kitchen counter or hang my clothes up inside out 🥲
@@GeorginasJourneyYes, you know what I mean 🙈. What a nightmare.... I could freak out reading your post. And then it's more stressfull than supportive 🤦🏻♀️😬. In have no solution for that. Actually my "solution" is living my rules and doing what's possible. Nobody needs to shower more than once a week or have warm meals 🥴... I cannot laugh anymore, but sarcasm is crucial.
Sorry to ask am sure you have answered this but do u not have family support , parents/siblings to help?😊
@@shiraalexander2236 if you have to apologise for asking something, it’s probably best not to ask it at all 😊
Thank you so much for your encouragement!❤
Any time! ❤️🩹
The USA is not strict about carers. Mine is a practicing alcoholic.
In the USA you can hire and interview your own caregivers or find a company to hire them. So I have a company find them.
I haven't had a helper most of the time since the Covid shutdowns because they say that they can't find one.
I would recommend you yt channels like - pain free you, cfs recovery, cfs health
Sadly they did not help. I have a thyroid tumour, deformed joints & a family history of death from cardiac problems by 45.
@@GeorginasJourneydo you have another thyroid tumour? I thought the one you had was removed.
@@PriyaMomma I have another one. I’ve talked about it in videos and shorts on here over the last 10 months or so
What is your standing and walking geart rate
Sitting propped up in bed, my hr is usually between 90-150, I don’t know about standing and walking as it’s so rare for me to be able to do it now
Just found a few old clips of my standing heart rate 😊 ua-cam.com/video/S7wtrrOgSW8/v-deo.htmlsi=vkx70XxWXZWi1dsa
Helo sister need seriously help for my daughter for self catherator.plz how can i contact u??i am from nepal.
My email is suwalsanjeev00@gmail.com
I need help for self chatertization for my child.plz