I hear this and I see you. I don't have EDS but I have had a similarly bed-ridden young life due to chronic pelvic pain, and the loneliness and loss of hope can be devastating. Thank you for making this and reaching out xx
Thank you so much for making this beautiful video. We have worth in being, not in doing, although I struggle to remember this too. The unknown futures of us with EDS or other disabilities is frightening, but facing these fears builds our souls.
Thank you for this. My world is through voice, and that's what I'm losing. It's hard but there is definitely the beginning of a new world at the end of every lost one. 💜
I suffer from HyperMobility Syndrome, Chronic Pain Syndrome and also Fibromyalgia and I'm 15. I'm in pain all the time and there is never a day I'm not in pain and I can't do a lot of thing myself so my mum and brother help me and it restricts you a lot so don't live the life of a so called "normal" teenager so life can be hard very hard. (I don't have EDS but HyperMobility Syndrome is on the same scale) It means a lot that you are making is more known because things like this are hard to explain because people can't see and thing you are fine because it's a hidden illness so thank you so much. Illnesses like this can be hard to live with and it is, but you have to always look on the bright side and be positive because tomorrow or the day after or even next week it could be a better day, your never know what each day will bring. So who ever is reading thing and have an illness, YOU ARE AMAZING, STONG AND BEAUTIFUL AND ALWAYS STAY POSITIVE 💙 Thank you
This really got to me. I don't have EDS, but I'm a fellow twentysomething spoonie, and my life for the past five years has been defeat after defeat with a few little rays of hope thrown in there just enough to keep me going. This is so very descriptive of that alien life.
Great video! 😊 From one EDS sufferer to another...Don't fear blindness. I am 32 and have EDS and have been legally blind from it (without glasses) since I was 12. I still have enough vision to be able to do almost anything when wearing my glasses. But if the day comes that I can't, at least I will have been able to say I was able to see before (some aren't that lucky to have ever been able to see) and have seen so much beauty the world has to offer. I'm sure I'd find refuge in music and things would taste stronger, smell sweeter. You can't live fearing what you'll lose...rejoice in what you have because you never know what each day will bring, especially with EDS. 💙
I'm 32 with EDS as well, I'd love to have someone to talk to. I'm at -4.00 vision with partial loss of peripheral vision on the left side that may or may not improve. Please get in touch!
You are so beautiful! (clearly inside and out, I mean geez your face) This video proves how much you have to give to the world. Inspiration, hope, perspective...
That was so powerful. I have never been so moved by any other video. As someone who might be facing an EDS diagnosis this hit me hard. Tears and goosebumps. Tears of loss and gratitude, of fear and hope, of sadness and joy. You express yourself so uniquely and your videos are truly perfect. I connect with you more than any other UA-camr and I've never been moved by any other UA-camr in the way that you move me. Thank you for your powerful vibrancy and defiant honesty, it gives me more hope than I could ever put into words.
Love this. I've lost all of my friends because they don't understand my condition, it's so nice to see it talked about and the struggles that come along with it. So thank you for making such a beautiful film.
Thank you for making this video, I cried watching it, it so beautifully encapsulates my experience of EDS, thank you for this artistic vision and see you in the other world (the good one where disability is not dis-ability) have a good day from London, England
You are doing such an amazing job! Making video's might be exhausting for you sometimes, but you are helping so many people. I sent you a message a while ago and thanks to you I got diagnosed with pots also. Knowing you're not alone makes it all a little bit better, because if you got this, i got this. Thanks for everything.
Rachel, I don't have EDS but I have several other conditions and you put so many things I try to say into words. Like all the vision loss stuff especially since that was my start to diagnosises and the center of my disabilities.
amazing video again. straight up,thank you for existing,💞🌸 your videos remind me I'm not alone. they bring me strength when I feel I'm about to crumble .stay you !
Hi Rachel, thank you for this video. I have RSD (aka. CRPS) and have always struggled with what the future may hold with my condition, and struggled with using my crutches and wheelchair. Your videos help me massively to keep my confidence and positive mindset while being a chronically ill young adult. Shit is hard, but thank you for helping me see that it is possible. Ps, your wee dog is adorable❤️
The loss of vision- thus terries me. I'm an artist. And the vision symptoms I'm already experiencing plus my hands cramping... 😂😲 this was beautiful. But scary. My body has been broken since forever- I'm way older than you- 50 plus, and waiting for my genetics appt. but the puzzle pieces seem to fit. Love your vids. ❤️
hey this video hits home for me because I also have eds and am starting to lose my vision. I'm struggling to find information about it and was wondering what are the symptoms you and Kay have that might signal loss off vision? just so I can compare
This was an incredible video. Excellent! Have you ever looked into prolotherapy or using sound waves to adjust spinal issues caused by eds. Many have found relief from Dr. Hauser at Caring Medical in Florida and Dr. Sommers in Utah. They use 2 different methods of relieving the pressure on the vagus nerves and other structures compressed by the ligament issues in eds. If you haven't already maybe you can look into their methods. Wishing you the best in health!
this is a beautiful video and tho I don't have Eds I can relate to the fear of the future as a spoonie seeking my second diagnosis but i feel blessed that people like you exist and share your experiences it makes me feel less alone being 18 and living with a chronic invisible illness. stay strong love no matter what EDS throws at you know you are supported and loved by the community
great video. ive always had bad vision and every year I go to the eye doctor, they tell me my eye sight got a bit worse. I asked my eye doctor if i'll continue to get worse for the rest of my life but she said no. i'll eventually just stay the same at some point. you however have a chance of increasing eye sight loss. I'm so sorry to hear that. you're forced to deal with this and forced to be brave about it. I hope you never have to experience the max of your disability. I wish you nothing but the best love.
This was an amazing video. I'm she was able to find and talk to you. I think this world needs people like you, because you really do help make it a better and more beautiful place.
I love this so much. Truly. Thank you. The words "We're told to push ourselves till we break, my body is already broken" speaks to my heart that is how I always feel. You have to give up on the life you worked for and dreamed of and find and new way of living that is still worthwhile and hopefully joyful, i am still really struggling with this. It seems that every time I come to terms with how my life must be with my EDS and the conditions that accompany it a new challenge hits me. I appreciate your videos and your voice 💖
Thanks! I’ve been thinking about getting back into making more in this style lately. I’ve got a chaotic bit of everything on my channel at the moment 😅
@@HotPinkSun It's ok, I get you. UA-cam is a process keep making good content you love and you'll eventually find something that fits in(btw your channel is great no matter what you choose to put out it's nice to see someone like you who's really doing their best at putting their authentic selves out there!)
My legal blindness may or may not be related to my EDS. I'm incredibly shy and socially awkward but I've been dealing as a blind bendy for years and am willing to help or support others.
I'm waiting on my diagnosis. Its been a year now. I'm unemployed and sleeping at friends houses because I don't have parents. Waiting for pain management and treatment at this point seems like a sick joke. Waiting for medical care is scary and like living in hell. Your videos make me feel a little less alone. I'm not sure if I have eds or not yet. It may be lupus or MS. But they are all in my family. Its a really scary time for me right now. I hope some day I can accept what's happening and change the way I view my life. Ive never felt so worthless and sad.
I feel hopeless EDS, IST-POTTS, Albinism, chronic anemia and no family history. I’m legally blind and defining ALL odds, but I’m exhausted and just want to give up
I'm 18 and I have some sort of connective tissue disorder. When I was 13 I got Lyme disease which made my disorder flare up. I then went to a genetic doctor to try to find what disorder I really have. Now they still do not know what it is. I've cried to myself because it seems like nobody know what is wrong. They think it might be a part of EDS. I'm going back to the genetics for more testing 2 weeks from not (October 2nd)
Hello, I only just found your videos today and I can't believe it didn't happen sooner. I'm a 25 year old LGBTQ+ with EDS and relate to everything I've heard you say so far. I'm wondering one random thing though-- how was the process of stretching your ears? Do they tear easily? Mine were stretched to 00 two different times but every time I cleaned them they would tear again and take so long to heal. I'd love to know more about your process and how you care for them! Sorry if you already addressed this somewhere, I've only seen 3 of your videos so far. Also thank you for helping spread the word.
This is where I'm at right now. I'm 32 with EDS and POTS. I had paramedics turn up here a couple of days ago because my left eye had severe pain and nothing would help. I went to the optometrist and had a bunch of tests. My retina hasn't detached, but I've lost part of the peripheral vision in my left eye and it appears to be neurological. Nobody can tell me if it will come back, just that I need more tests. I assume it's something chiari or migraine related, but it definitely had me thinking about what will become of my vision from here on out. I live on a remote country property in Australia, where I've just had to move back in with my parents due to being too fatigued to work. I've been put on fludrocortisone for the POTS, but it's not making a huge difference. I feel very alone. Is there a place online where I can talk with women like myself who don't have kids and partners? This is so tough, and I've lost a lot of my friends because I have to cancel plans. For years I have been told this was all in my head, despite obvious signs like needing surgery at 19 to fuse the bones in both my feet because I lost the ability to walk without severe pain. It wasn't until I started blacking out and throwing up that people believed it wasn't a mental health issue. If you know anyone in a similar social situation that I could talk to,t hat would be so good. Nobody even knows what EDS is here.
Hey, you are not alone. EDS is a hard thing to navigate, if you're on facebook I always recommend people to join this group: "EDS - Zebras need Zebras" facebook.com/groups/262111370664209/ It's not selectively for women or people without kids and partners but I think you will find people to connect with there.
My biggest fear of having EDS is developing heart proplems. This is a huge fear for me. i had my heart scanned and monitored. it came back normal but with a slightly weak heart valve but the doctor said that is normal for the average human to have this and i only seem to be suffering with mild POTS and chronic panic attacks due to being burntout and crippling health anxiety. its becoming a really huge fear of mine but i need to learn that not everyone who has EDS will develop a heart problem. Its still very scary to me because of how debilitating my condition is already. i get heart palpitations from chronic fatigue and pain flair up too. this sets off my panic attacks for hours. its horrible but im getting there
I hear this and I see you. I don't have EDS but I have had a similarly bed-ridden young life due to chronic pelvic pain, and the loneliness and loss of hope can be devastating. Thank you for making this and reaching out xx
Thank you so much for making this beautiful video. We have worth in being, not in doing, although I struggle to remember this too. The unknown futures of us with EDS or other disabilities is frightening, but facing these fears builds our souls.
What a beautiful little film. Thank you.
thank you for sharing. this hits really close to home.
Thank you for this. My world is through voice, and that's what I'm losing. It's hard but there is definitely the beginning of a new world at the end of every lost one. 💜
I suffer from HyperMobility Syndrome, Chronic Pain Syndrome and also Fibromyalgia and I'm 15.
I'm in pain all the time and there is never a day I'm not in pain and I can't do a lot of thing myself so my mum and brother help me and it restricts you a lot so don't live the life of a so called "normal" teenager so life can be hard very hard. (I don't have EDS but HyperMobility Syndrome is on the same scale) It means a lot that you are making is more known because things like this are hard to explain because people can't see and thing you are fine because it's a hidden illness so thank you so much. Illnesses like this can be hard to live with and it is, but you have to always look on the bright side and be positive because tomorrow or the day after or even next week it could be a better day, your never know what each day will bring. So who ever is reading thing and have an illness, YOU ARE AMAZING, STONG AND BEAUTIFUL AND ALWAYS STAY POSITIVE 💙 Thank you
This really got to me. I don't have EDS, but I'm a fellow twentysomething spoonie, and my life for the past five years has been defeat after defeat with a few little rays of hope thrown in there just enough to keep me going. This is so very descriptive of that alien life.
I love this video. Thank you for sharing this. I fear the future because of this illness and what will happen to me.
Thank you thank you thank you a million times.
don't be fooled. this video is a masterpiece.
What an eloquently aesthetically executed amazing video. 😱
Thanks for making this video, Im so glad I watched it as your video has made me feel a bit better today.
Great video! 😊
From one EDS sufferer to another...Don't fear blindness. I am 32 and have EDS and have been legally blind from it (without glasses) since I was 12. I still have enough vision to be able to do almost anything when wearing my glasses. But if the day comes that I can't, at least I will have been able to say I was able to see before (some aren't that lucky to have ever been able to see) and have seen so much beauty the world has to offer. I'm sure I'd find refuge in music and things would taste stronger, smell sweeter. You can't live fearing what you'll lose...rejoice in what you have because you never know what each day will bring, especially with EDS. 💙
I'm 32 with EDS as well, I'd love to have someone to talk to. I'm at -4.00 vision with partial loss of peripheral vision on the left side that may or may not improve. Please get in touch!
You are so beautiful! (clearly inside and out, I mean geez your face) This video proves how much you have to give to the world. Inspiration, hope, perspective...
That was so powerful. I have never been so moved by any other video. As someone who might be facing an EDS diagnosis this hit me hard. Tears and goosebumps. Tears of loss and gratitude, of fear and hope, of sadness and joy.
You express yourself so uniquely and your videos are truly perfect. I connect with you more than any other UA-camr and I've never been moved by any other UA-camr in the way that you move me.
Thank you for your powerful vibrancy and defiant honesty, it gives me more hope than I could ever put into words.
Love this. I've lost all of my friends because they don't understand my condition, it's so nice to see it talked about and the struggles that come along with it. So thank you for making such a beautiful film.
Your dog is the best thing I have seen this week 😍😍🐶
Absolutely wonderful, thank you for taking the time and effort to make this video.
I also have never met anyone other than myself with EDS. Thank you for this. I find comfort in your videos knowing that I'm not alone.
This is one of the best videos, I've watched it so many times. I hope things are going as well as they can be.
Thank you for making this video, I cried watching it, it so beautifully encapsulates my experience of EDS, thank you for this artistic vision and see you in the other world (the good one where disability is not dis-ability) have a good day from London, England
Thank you, I relate so much (and might be crying just a little bit)
This was a stunning, and I mean STUNNING video. Great edit, great shots and an amazing message. Beautiful.
+Heather Bronge thank you so much!
You are doing such an amazing job! Making video's might be exhausting for you sometimes, but you are helping so many people. I sent you a message a while ago and thanks to you I got diagnosed with pots also. Knowing you're not alone makes it all a little bit better, because if you got this, i got this. Thanks for everything.
+Amy de Wit 💖😭
Powerful.
Rachel, I don't have EDS but I have several other conditions and you put so many things I try to say into words. Like all the vision loss stuff especially since that was my start to diagnosises and the center of my disabilities.
A stunningly beautiful, profoundly touching film; a masterpiece. I love it. I love you all.
How beautifully said. I relate, wholeheartedly ❤
What you do is so important. Thank you.
amazing video again. straight up,thank you for existing,💞🌸 your videos remind me I'm not alone. they bring me strength when I feel I'm about to crumble .stay you !
Hi Rachel, thank you for this video. I have RSD (aka. CRPS) and have always struggled with what the future may hold with my condition, and struggled with using my crutches and wheelchair. Your videos help me massively to keep my confidence and positive mindset while being a chronically ill young adult. Shit is hard, but thank you for helping me see that it is possible. Ps, your wee dog is adorable❤️
Loved this, great job with making this. I might share this just because of May
Good luck and wishes to you both
Thanks Petra :)
The loss of vision- thus terries me. I'm an artist. And the vision symptoms I'm already experiencing plus my hands cramping... 😂😲 this was beautiful. But scary. My body has been broken since forever- I'm way older than you- 50 plus, and waiting for my genetics appt. but the puzzle pieces seem to fit. Love your vids. ❤️
hey this video hits home for me because I also have eds and am starting to lose my vision. I'm struggling to find information about it and was wondering what are the symptoms you and Kay have that might signal loss off vision? just so I can compare
This is a gorgeous video. Your message was so beautiful and clear.
This was an incredible video. Excellent! Have you ever looked into prolotherapy or using sound waves to adjust spinal issues caused by eds. Many have found relief from Dr. Hauser at Caring Medical in Florida and Dr. Sommers in Utah. They use 2 different methods of relieving the pressure on the vagus nerves and other structures compressed by the ligament issues in eds. If you haven't already maybe you can look into their methods. Wishing you the best in health!
I love this so much, I don't even have the right words to express it
this is a beautiful video and tho I don't have Eds I can relate to the fear of the future as a spoonie seeking my second diagnosis but i feel blessed that people like you exist and share your experiences it makes me feel less alone being 18 and living with a chronic invisible illness. stay strong love no matter what EDS throws at you know you are supported and loved by the community
great video. ive always had bad vision and every year I go to the eye doctor, they tell me my eye sight got a bit worse. I asked my eye doctor if i'll continue to get worse for the rest of my life but she said no. i'll eventually just stay the same at some point. you however have a chance of increasing eye sight loss. I'm so sorry to hear that. you're forced to deal with this and forced to be brave about it. I hope you never have to experience the max of your disability. I wish you nothing but the best love.
This was an amazing video. I'm she was able to find and talk to you. I think this world needs people like you, because you really do help make it a better and more beautiful place.
Thanks John :)
Beautiful 😭💖
This video is perfection
I love this so much. Truly. Thank you. The words "We're told to push ourselves till we break, my body is already broken" speaks to my heart that is how I always feel. You have to give up on the life you worked for and dreamed of and find and new way of living that is still worthwhile and hopefully joyful, i am still really struggling with this. It seems that every time I come to terms with how my life must be with my EDS and the conditions that accompany it a new challenge hits me. I appreciate your videos and your voice 💖
Really have enjoyed your videos I came here from your migraine videos and got a lot more, I have a version of CIDP with other things of course.
thank you for this. so beautiful and powerful and needed. happy awareness month 💪🏼🥄
Rachel, this is so beautiful! Thank you for sharing this wonderful piece with us.
Nice video! Greatly edited and nicely put together you peeked my interest actually and I might have to keep watching a few of your videos! :D
Thanks! I’ve been thinking about getting back into making more in this style lately. I’ve got a chaotic bit of everything on my channel at the moment 😅
@@HotPinkSun It's ok, I get you. UA-cam is a process keep making good content you love and you'll eventually find something that fits in(btw your channel is great no matter what you choose to put out it's nice to see someone like you who's really doing their best at putting their authentic selves out there!)
My legal blindness may or may not be related to my EDS. I'm incredibly shy and socially awkward but I've been dealing as a blind bendy for years and am willing to help or support others.
I'm waiting on my diagnosis. Its been a year now. I'm unemployed and sleeping at friends houses because I don't have parents. Waiting for pain management and treatment at this point seems like a sick joke. Waiting for medical care is scary and like living in hell. Your videos make me feel a little less alone. I'm not sure if I have eds or not yet. It may be lupus or MS. But they are all in my family. Its a really scary time for me right now. I hope some day I can accept what's happening and change the way I view my life. Ive never felt so worthless and sad.
Great video. Now I really have to get an appointment with an ophthalmologist. Eds can be really scary sometimes.
I feel hopeless EDS, IST-POTTS, Albinism, chronic anemia and no family history. I’m legally blind and defining ALL odds, but I’m exhausted and just want to give up
This is beautifully done. Thank you for this.
Nothing but LOVE.
+Karen Adams 💖
Why are you bae?!😭😭😭 This was perfect, thank you for being so real.
This is definitely my favorite video of you💓
I'm 18 and I have some sort of connective tissue disorder. When I was 13 I got Lyme disease which made my disorder flare up. I then went to a genetic doctor to try to find what disorder I really have. Now they still do not know what it is. I've cried to myself because it seems like nobody know what is wrong. They think it might be a part of EDS. I'm going back to the genetics for more testing 2 weeks from not (October 2nd)
Can you elaborate on how your vision has declined? I too have EDS and have experienced some visual disturbances for years.
This is really good, and I may or may not be crying slightly.
+living life as me 💕
I relate so much, still haven't met anyone with EDS
So, so needed this today.
Hello,
I only just found your videos today and I can't believe it didn't happen sooner. I'm a 25 year old LGBTQ+ with EDS and relate to everything I've heard you say so far.
I'm wondering one random thing though-- how was the process of stretching your ears? Do they tear easily? Mine were stretched to 00 two different times but every time I cleaned them they would tear again and take so long to heal. I'd love to know more about your process and how you care for them! Sorry if you already addressed this somewhere, I've only seen 3 of your videos so far.
Also thank you for helping spread the word.
This is where I'm at right now. I'm 32 with EDS and POTS. I had paramedics turn up here a couple of days ago because my left eye had severe pain and nothing would help. I went to the optometrist and had a bunch of tests. My retina hasn't detached, but I've lost part of the peripheral vision in my left eye and it appears to be neurological. Nobody can tell me if it will come back, just that I need more tests. I assume it's something chiari or migraine related, but it definitely had me thinking about what will become of my vision from here on out. I live on a remote country property in Australia, where I've just had to move back in with my parents due to being too fatigued to work. I've been put on fludrocortisone for the POTS, but it's not making a huge difference. I feel very alone. Is there a place online where I can talk with women like myself who don't have kids and partners? This is so tough, and I've lost a lot of my friends because I have to cancel plans. For years I have been told this was all in my head, despite obvious signs like needing surgery at 19 to fuse the bones in both my feet because I lost the ability to walk without severe pain. It wasn't until I started blacking out and throwing up that people believed it wasn't a mental health issue. If you know anyone in a similar social situation that I could talk to,t hat would be so good. Nobody even knows what EDS is here.
Hey, you are not alone. EDS is a hard thing to navigate, if you're on facebook I always recommend people to join this group:
"EDS - Zebras need Zebras"
facebook.com/groups/262111370664209/
It's not selectively for women or people without kids and partners but I think you will find people to connect with there.
My biggest fear of having EDS is developing heart proplems. This is a huge fear for me. i had my heart scanned and monitored. it came back normal but with a slightly weak heart valve but the doctor said that is normal for the average human to have this and i only seem to be suffering with mild POTS and chronic panic attacks due to being burntout and crippling health anxiety. its becoming a really huge fear of mine but i need to learn that not everyone who has EDS will develop a heart problem. Its still very scary to me because of how debilitating my condition is already. i get heart palpitations from chronic fatigue and pain flair up too. this sets off my panic attacks for hours. its horrible but im getting there
I love your videos!!
Love this
Emma Arsenault 💖💖💖
I'm crying.
You are such a beautiful woman..imside and out. I would be so lucky to find a woman as wonderful as you one day.