This is an incredible collection of experiences and I’m so grateful I got to hear them. I’m bawling my eyes out at 4am in bed rn for every one of us who suffer from EDS and similar conditions. There’s a fire inside of you, the determination not to let the struggle defeat you and I know for certain that I’ll be back to listen many times more in the future when I need to borrow a little of that fire for myself. There will come a day when adequate treatments for this thing are found and I plan to be around long enough to see it. Stay strong and may you find a path to wellness.
This says and explains so much!!! Great piece to share with family and friends. Thanks again for your gift. This will definitely go far to bridge the gap in communicating with non-zebras.
This was awesome. Great job. I think every person with chronic illness' family should hear this. To even know how hard every day is but we still do it. "Just at a new pace"
Jenni this is outstanding. Educational, touching and SO well produced. This is broadcast quality! UEA better give you a good mark for this, or I'll come back and have some strong words.
This is incredible Jenni! I found your youtube through a fb group btw. So happy I found you! I just started my channel and want to find others who are passionate about education around this. Thank you for making this! It's soooo important!
Np I love watching videos about chronic Illness and I don't have any chronic illnesses or disabilities besides ahstma ADHD OCD I still like to learn about chronic Illness and disease bc of my sister she has a rare amino acid disorder called Hyperprolinemia type 2 only 3 people in the US have it including her. She also has ADHD, epilepsy and Cerebral Palsy the her feet she just walks a bit crooked her Pituitary gland is not the way it should be and her bone density is weak
Wow. Lots of spoons & love to your and your sister. I'm doing a series soon featuring people with lots of different conditions so hopefully you'll find that interesting. x
This is an incredible collection of experiences and I’m so grateful I got to hear them. I’m bawling my eyes out at 4am in bed rn for every one of us who suffer from EDS and similar conditions.
There’s a fire inside of you, the determination not to let the struggle defeat you and I know for certain that I’ll be back to listen many times more in the future when I need to borrow a little of that fire for myself.
There will come a day when adequate treatments for this thing are found and I plan to be around long enough to see it.
Stay strong and may you find a path to wellness.
Oh how I cried. From recognition, from hopelessness, from hope
You are not the first and you won't be the last, I should probably attach a warning. There is always hope! Spoons & Love xxx
This says and explains so much!!! Great piece to share with family and friends. Thanks again for your gift. This will definitely go far to bridge the gap in communicating with non-zebras.
Thank you so much. I really hope it helps. This is exactly the response I'd hope for x
This is beautiful and really well made. They should definitely play this at future EDS conferences
Thank you so much Oliver! I'd love that x
The last time my neck was straight and no pain was 1989.
I'm so sorry Nikolai I hope that one day you might be able to find a little relief. Spoons & Love
@@ChronicallyJenni Thank you
Omg. Yes
What a great report. Thank you Jenni! xxxxxxxxxx
Thank you
This was awesome. Great job. I think every person with chronic illness' family should hear this. To even know how hard every day is but we still do it. "Just at a new pace"
Thank you so much! I really hope it can be heard by lots of families so they can understand a little better. Spoons & Love x
Jenni this is outstanding. Educational, touching and SO well produced. This is broadcast quality! UEA better give you a good mark for this, or I'll come back and have some strong words.
Thank you so so much Josh! They gave me a first for it don't you worry :P x
@@ChronicallyJenni the better Fucking have
Thank you for making this amazing video! Much love from a classical zebra!
Thank you so much for listening Kristin! Spoons & Love x
Yes! Amazing and thank you! This will help my family and friends understand me better.
Yay I'm so pleased! Let me know what they think x Thanks Kat x
THANK YOU.
This is incredible Jenni! I found your youtube through a fb group btw. So happy I found you! I just started my channel and want to find others who are passionate about education around this.
Thank you for making this! It's soooo important!
Aww Thank you so much!
This hits every nail on the head! Thank you so so much! Brilliant! X
Thank you so much Linda
Congratulations! This is beautiful and powerful. I hope this can go far and wide! Xxx
Thank you so much Karen x I hope so too x
This is fantastic Jenni!!!
Thank you so much lovely 💜
I understand. All my ❤
Im beginning to think this could be possible for me as well, after the new year my husband and i will go to thr Dr amd start up tests.
Aye
eh up
Love the video
Thank you so much
Np I love watching videos about chronic Illness and I don't have any chronic illnesses or disabilities besides ahstma ADHD OCD I still like to learn about chronic Illness and disease bc of my sister she has a rare amino acid disorder called Hyperprolinemia type 2 only 3 people in the US have it including her. She also has ADHD, epilepsy and Cerebral Palsy the her feet she just walks a bit crooked her Pituitary gland is not the way it should be and her bone density is weak
Wow. Lots of spoons & love to your and your sister. I'm doing a series soon featuring people with lots of different conditions so hopefully you'll find that interesting. x