The giving up thing!!! And yet it’s the opposite!!! Using a wheelchair is fighting to keep a good quality of life! I started using a wheelchair because I want to leave my darn house once in a while people!
This video is what finally got me to admit to myself (and give myself permission to admit) that I need a wheelchair. I can't stay in my bedroom for the rest of my life. THAT is giving up. Getting a chair will give me my life back.
Annie: talks about people sitting with wide hips/ one leg up is EDS like Me: Is lying wide hipped with legs out to relieve hEDS pain. Annie: Is Psychic
The body language thing is something I haven't thought about but I too sit in ways to relieve chronic pain from injuries, diagnosed fibromyalgia and suspected EDS.
I sit so funny sometimes, especially with hypermobility. My fiancé will point out sometimes that one of my limbs is positioned super strangely but it feels nice to me! I also have fibro and suspect EDS.
Great job girls! I’m a fellow ambulatory wheelchair user with EDS ( & also talk about it a bit on my own CZcams channel) and so really appreciate you guys raising awareness! Awesome job!
Speaking of gaits, I get told all the time “you walk with swagger!” When in fact I have scoliosis and I have an affected gait (too). and I will sit with my back at a slant to the right because of my back pain. And when I drive I slant the same way because I literally can’t sit straight up and down. I love this conversation! So informative on how each persons disability is different! Thank you for sharing!!
Ugh, yes. I constantly had to shift my weight today and I had to cross my legs while I waited in line in order to not lose my balance. People really don't know how much we struggle since we don't complain. Thank you for this video
I relate to Lolo being curious about other people's disabilities. I have cerebral palsy (I don't use a wheelchair) and people either notice my gait or they don't. I feel like I don't know enough about other disabilities and like I'm right on the edge of being part of the disabled community but also being considered able. It really helps to hear other people talking about similar struggles I have too. Thank you Annie and Lolo, I love your videos, keep doing what you're doing!
I was recently diagnosed with MS, and walking has been so hard. Walking from one end of my house to other mean I need to rest. Im so glad I found this video, Im planning on buying a power wheelchair so I can gain some independence again, but all I’ve heard is that im being lazy. I just want to be able to do stuff on my own again!
You'd mentioned body language. When I cross my leg over the knee, or cross my arms and it appears that I am, "defensive", "angry", "cold". When in fact, it relieves some pain. When my arms dangle, they hurt. Most of the time, I have not been using a wheelchair, but it looks like I will be needing one very soon. I have been enjoying many of your videos; you are helping me to find the courage, to accept this disability with grace and courage. Thank you
I use a cane for balance reasons and also can't put my weight on ankles sometimes. I'm in my 40s and people know me in my small town so I don't get weird looks anymore. When I was in my 20s in a slightly bigger area a lot of people thought I was doing it for attention. A lot of doctors and mental health therapists treated me like I was crazy. I've been diagnosed with Mosaic Down Syndrome now and have other genetic issues probably from where my parents were older I am the youngest child all of my siblings are at least 7 years older than me.
If I use up all my strength & energy walking around doing random errands, then I'm not able to do more important things like exercise, physical therapy, standing to make dinner, going out with friends...
The “penguin walk” got me because I refer to my walk as the “duck waddle”. I’ve dealt with chronic pain for 20 years because of Lyme Disease and for the past year I’ve needed my cane and then my wheelchair more and more so if I’m shuffling at the house without the cane I’ll notice my first instinct is to go into the duck waddle. I try to look on the positives when I can but just hearing others talk about their hair being so different and the wheelchair being the way to get things done like college classes etc and not even thinking of the social interactions because the wheelchair was needed to get to classes on time is something I really relate to even though our stories and conditions are so different. Great video to watch and I really enjoyed the positive energy and laughter coming from you both! 💖💖
Understanding other disabilities! Such an interesting topic. Really, I have a lot of friends with disabilities and they all ask me questions that are totally from the perspective of their illnesses. Its really hard to fully understand an illness that one hasn’t experienced. But trying means a lot!!! ❤️
cool video, I am Autistic, Dyspraxic and Epileptic and have had friends who are abulitory wheelchair users since school, and because people had questioned a been unkind about my disabilities I never questioned them, however this should not be the case people should mind their own business. Also thanks for the body language thing, very interesting.
Annie, I've actually been meaning to contact you about seeing if we could work something out together for a while; I work with an org who highlights the stories of those from marginalized and underrepresented communities to work for political change. You were *vital* in changing my view on my own disability and how I see myself as a wheelchair user, and I am all about sharing that with as many people as possible. (This 100% goes for Lolo too!!!!) ANYWAY, I have a whole lot I would love to ask you about, etc. What would be the best way to get in touch with you? (& Lolo!)
The penguin.... also “People will think ‘this person has cool body language.’.... The captain Morgan on top of a table…” LMBO as a POTSie with a signature "drunken stagger" /gasping for bloodchoking relief as my new "gait" ?? I was CRACKING UP through SO much of this. AND am taking notes on how to TEACH PEOPLE as you amazing illders have BEEN doing soo well. THANK YOU!!! 🤩🤩🤩
Thanks Annie and the other girl for this video. Lying in bed, having a bad day, aching about in every joint, this is real helpful. I think I want finially a clear diagnosis whether I am having EDS as well. Because it feels like.
"They're thinking 'Oh, she's hitting a pose...' and it's like 'No, my back is just killing me." LMBOOOOOOO i love you Lolo!!! And I already loved Annie too! :D
Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a disease that causes the death of neurons controlling voluntary muscles. Some also use the term motor neuron disease for a group of conditions of which ALS is the most common. ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. It may begin with weakness in the arms or legs, or with difficulty speaking or swallowing. About half of the people affected develop at least mild difficulties with thinking and behavior and most people experience pain. Most eventually lose the ability to walk, use their hands, speak, swallow, and breathe. Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. The Ehlers-Danlos syndromes (EDS) are currently classified in a system of thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit.
Thank You, Thank You, Thank You for doing a video. Long time no see. I love your videos and I would love it if you can do a video talking abut what it is like for people who have "Un-Diagnosed Disabilities"? There are people who do struggle with Disabilities but because of their age or when a doctor does a test and you are just an Eighth of and Inch from a real diagnosis but because you are just shy of it you can't be diagnosed with it or get a diagnosis. It is so important to bring awareness to this because there are people who go through Hell every day because they may not get their disability diagnosed and they may have family and friends who will not believe them or will compare them to someone who does have a Diagnosed Disability. I know the struggles when I started to need to use a power chair and I know what it is like to have someone call you a faker or juist telling you to just get some exercise and walk like a "Normal" Person. Again Thank You for your videos.
The conversation about body language is interesting because I have ADHD so my body language probably comes off odd for the given situation. Disabled people are probably constantly throwing off body language experts
I’m in the process of pondering the power chair. Mentally this is hard. My mom thinks it would help me with fatigue and pain. Also have a chronic illness.
I'm still undiagnosed and have ataxia general muscle weakness and avn in my bones in all my bones knees shoulders and hips .I also myopathy too but I cant walk anymore so I use a motorized wheelchair I have very bad bone pain too
Annie, you mentioned that EDS is degenerative but all the doctors I have seen insist is isn’t. Do you have any links etc that I could use to explain it better? Thank you for everything you do :)
This is how one of my doctors explained to me, however I can't find any sources on the vocabulary to verify; I was told there is often some confusion with the terms progressive and degenerative. Progressive means that the conditions itself spreads or worsens, like a cancer could be. Degenerative refers to one's health condition declining regardless of the unchanging status of disease. Though now that I look for it, even THAT might be the wrong word? Language is weird. While EDS is so varied and there are a few people who have seen improvements in physical stability and strength through treatment, by observation of our communities, the common narrative is that with time and mostly the wear, exertion, and strain, (there is suspected hormonal changes that affect it as well) there is an increase in pain and weakness as well as comorbid conditions.
Thank you so much for your reply! I often wonder about this; mostly from a fear point of view. My health has declined a lot over the last 7 years. The last 4 years have been gradually terrible lol and I was diagnosed with hEDS in August this year. I’m scared that it’ll keep getting worse and worse, and I have days when I don’t know how I’ll keep going if it does. I’m trying physiotherapy and being referred to hydrotherapy but I’m only getting worse :( Seeing others, like yourself, making videos and raising awareness helps so much to show me that I’m not alone, so thank you so much x
Did you ever go through a grieving process? My life is moving further and further away from what I had hoped and expected, that I feel angry and so so sad 😞 I’m not all that sure how to get past that
![Ehlers-Danlos Syndrome: My Diagnosis Journey [CC]](http://i.ytimg.com/vi/ot1HFF7QWbQ/mqdefault.jpg)
![Straw Bans Are DANGEROUS For Disabled People [CC]](http://i.ytimg.com/vi/uRy_0IEwxMw/mqdefault.jpg)
![Gender Expression and Disability ft. Jessica Kellgren-Fozard [CC]](/img/n.gif)
The giving up thing!!! And yet it’s the opposite!!! Using a wheelchair is fighting to keep a good quality of life! I started using a wheelchair because I want to leave my darn house once in a while people!
AAAAMMMMEEEENNNN
This video is what finally got me to admit to myself (and give myself permission to admit) that I need a wheelchair. I can't stay in my bedroom for the rest of my life. THAT is giving up. Getting a chair will give me my life back.
"THAT is giving up." ABSOFUCKINLUTELY!!!! #FuckAbleism
Annie: talks about people sitting with wide hips/ one leg up is EDS like
Me: Is lying wide hipped with legs out to relieve hEDS pain.
Annie: Is Psychic
instablaster
The body language thing is something I haven't thought about but I too sit in ways to relieve chronic pain from injuries, diagnosed fibromyalgia and suspected EDS.
I sit so funny sometimes, especially with hypermobility. My fiancé will point out sometimes that one of my limbs is positioned super strangely but it feels nice to me! I also have fibro and suspect EDS.
This helped me a ton, I'm trying to convince my parents that a wheelchair will help me and I need one.
Thanks for this!
Great job girls! I’m a fellow ambulatory wheelchair user with EDS ( & also talk about it a bit on my own CZcams channel) and so really appreciate you guys raising awareness! Awesome job!
Real talk: I have EDS and ADHD and this is the only dual host podcast episode I've ever been able(!) To sit trough. Amazing!
Speaking of gaits, I get told all the time “you walk with swagger!” When in fact I have scoliosis and I have an affected gait (too). and I will sit with my back at a slant to the right because of my back pain. And when I drive I slant the same way because I literally can’t sit straight up and down. I love this conversation! So informative on how each persons disability is different! Thank you for sharing!!
Ugh, yes. I constantly had to shift my weight today and I had to cross my legs while I waited in line in order to not lose my balance. People really don't know how much we struggle since we don't complain. Thank you for this video
I relate to Lolo being curious about other people's disabilities. I have cerebral palsy (I don't use a wheelchair) and people either notice my gait or they don't. I feel like I don't know enough about other disabilities and like I'm right on the edge of being part of the disabled community but also being considered able. It really helps to hear other people talking about similar struggles I have too. Thank you Annie and Lolo, I love your videos, keep doing what you're doing!
I was recently diagnosed with MS, and walking has been so hard. Walking from one end of my house to other mean I need to rest. Im so glad I found this video, Im planning on buying a power wheelchair so I can gain some independence again, but all I’ve heard is that im being lazy. I just want to be able to do stuff on my own again!
you and lolo both have such positive energies i love it
You'd mentioned body language. When I cross my leg over the knee, or cross my arms and it appears that I am, "defensive", "angry", "cold". When in fact, it relieves some pain. When my arms dangle, they hurt.
Most of the time, I have not been using a wheelchair, but it looks like I will be needing one very soon. I have been enjoying many of your videos; you are helping me to find the courage, to accept this disability with grace and courage. Thank you
I use a cane for balance reasons and also can't put my weight on ankles sometimes. I'm in my 40s and people know me in my small town so I don't get weird looks anymore. When I was in my 20s in a slightly bigger area a lot of people thought I was doing it for attention. A lot of doctors and mental health therapists treated me like I was crazy. I've been diagnosed with Mosaic Down Syndrome now and have other genetic issues probably from where my parents were older I am the youngest child all of my siblings are at least 7 years older than me.
Using my wheelchair means I can enjoy more and not have to worry about how much I need to do that day as much
If I use up all my strength & energy walking around doing random errands, then I'm not able to do more important things like exercise, physical therapy, standing to make dinner, going out with friends...
The “penguin walk” got me because I refer to my walk as the “duck waddle”. I’ve dealt with chronic pain for 20 years because of Lyme Disease and for the past year I’ve needed my cane and then my wheelchair more and more so if I’m shuffling at the house without the cane I’ll notice my first instinct is to go into the duck waddle. I try to look on the positives when I can but just hearing others talk about their hair being so different and the wheelchair being the way to get things done like college classes etc and not even thinking of the social interactions because the wheelchair was needed to get to classes on time is something I really relate to even though our stories and conditions are so different. Great video to watch and I really enjoyed the positive energy and laughter coming from you both! 💖💖
I am disabled you tuber I quadrpligic cearbal Palsy I live nursing homes Bradford stavely birklease
OMG....what Lolo said about the cool position in the chair, with the sitting to the side, lol. Kills me! So been there!
Understanding other disabilities! Such an interesting topic. Really, I have a lot of friends with disabilities and they all ask me questions that are totally from the perspective of their illnesses. Its really hard to fully understand an illness that one hasn’t experienced. But trying means a lot!!! ❤️
Another EDSer sitting cross legged while watching this and feeling called out right now...
cool video, I am Autistic, Dyspraxic and Epileptic and have had friends who are abulitory wheelchair users since school, and because people had questioned a been unkind about my disabilities I never questioned them, however this should not be the case people should mind their own business. Also thanks for the body language thing, very interesting.
Love this topic! I’ve definitely got lots of M.E. and POTS poses.
Annie, I've actually been meaning to contact you about seeing if we could work something out together for a while; I work with an org who highlights the stories of those from marginalized and underrepresented communities to work for political change. You were *vital* in changing my view on my own disability and how I see myself as a wheelchair user, and I am all about sharing that with as many people as possible.
(This 100% goes for Lolo too!!!!)
ANYWAY, I have a whole lot I would love to ask you about, etc. What would be the best way to get in touch with you? (& Lolo!)
Maybe send her a PM through insta?
The penguin.... also “People will think ‘this person has cool body language.’.... The captain Morgan on top of a table…” LMBO as a POTSie with a signature "drunken stagger" /gasping for bloodchoking relief as my new "gait" ?? I was CRACKING UP through SO much of this. AND am taking notes on how to TEACH PEOPLE as you amazing illders have BEEN doing soo well. THANK YOU!!! 🤩🤩🤩
PS--I hope to have my Tok/IG/YT going very soon just like my illders do here!!
Thanks Annie and the other girl for this video. Lying in bed, having a bad day, aching about in every joint, this is real helpful. I think I want finially a clear diagnosis whether I am having EDS as well. Because it feels like.
I also use a wheelchair for long distances due to my leg muscle weakness... thank you for making this content to get the word out ❤
I LOVE HOW UPBEAT LOLO IS SHE IS AMAZING RAHH
"They're thinking 'Oh, she's hitting a pose...' and it's like 'No, my back is just killing me." LMBOOOOOOO i love you Lolo!!! And I already loved Annie too! :D
Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease, is a disease that causes the death of neurons controlling voluntary muscles. Some also use the term motor neuron disease for a group of conditions of which ALS is the most common. ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. It may begin with weakness in the arms or legs, or with difficulty speaking or swallowing. About half of the people affected develop at least mild difficulties with thinking and behavior and most people experience pain. Most eventually lose the ability to walk, use their hands, speak, swallow, and breathe.
Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
The Ehlers-Danlos syndromes (EDS) are currently classified in a system of thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit.
A model, that’s amazing! Much needed to the industry. Inclusion is a thing and people need to know!
Thank You, Thank You, Thank You for doing a video. Long time no see. I love your videos and I would love it if you can do a video talking abut what it is like for people who have
"Un-Diagnosed Disabilities"? There are people who do struggle with Disabilities but because of their age or when a doctor does a test and you are just an Eighth of and Inch from a real diagnosis but because you are just shy of it you can't be diagnosed with it or get a diagnosis. It is so important to bring awareness to this because there are people who go through Hell every day because they may not get their disability diagnosed and they may have family and friends who will not believe them or will compare them to someone who does have a Diagnosed Disability. I know the struggles when I started to need to use a power chair and I know what it is like to have someone call you a faker or juist telling you to just get some exercise and walk like a "Normal" Person.
Again Thank You for your videos.
Ooh! I have done a video talking about just that! czcams.com/video/moGxnPIsu6k/video.html
The conversation about body language is interesting because I have ADHD so my body language probably comes off odd for the given situation. Disabled people are probably constantly throwing off body language experts
Annie: *explaining her POTS*
Lolo: *casually* "Oh shit!"
Thanks for the video! I know fibro is very different but I really feel you with having to lean on things and shift around to accommodate pain
I have EDS and POTS!!! Thank you for sharing!!!
Me too!
Stay strong!
I do medical marijuana and it certainly helps...4 me
I love these two women! You are both so good at explaining your issues. I think we all benefit from your thoughts and your information.
I’m in the process of pondering the power chair. Mentally this is hard. My mom thinks it would help me with fatigue and pain. Also have a chronic illness.
Fascinating conversation
I used to think everyone was in pain too lol
I caught myself doing the Captain Morgan during Thanksgiving cooking.
Lol the struggle. I've begun doing something similar as I lean on my kitchen drawer as I wash dishes.
Newly subscribed. Thanks for this!
Body language 'norms' are SO exclusionary of disabled people!!! Yes!!!!!
WHERE CAN WE WATCH Give Me Liberty!!????? I canNOT wait!!!
I know it’s included on Amazon Prime but if you google “give me liberty film 2019” they can tell you the other streaming sites it’s on!
@@theannieelainey ooooh thank you!!
Hello to all my other EDS zebras 🦓
From one zebra 2 another..hello..
stay strong and be blessed
@@rieriec.36 thank you and same to you.
unrelated- omg annie our birthdays are a few days apart!!
Oh I didn’t know you guys use powerchair I wish I used one
I'm still undiagnosed and have ataxia general muscle weakness and avn in my bones in all my bones knees shoulders and hips .I also myopathy too but I cant walk anymore so I use a motorized wheelchair I have very bad bone pain too
I can’t eat without my elbows on the table. I’m so rude. Lol
Annie, you mentioned that EDS is degenerative but all the doctors I have seen insist is isn’t. Do you have any links etc that I could use to explain it better? Thank you for everything you do :)
This is how one of my doctors explained to me, however I can't find any sources on the vocabulary to verify; I was told there is often some confusion with the terms progressive and degenerative. Progressive means that the conditions itself spreads or worsens, like a cancer could be. Degenerative refers to one's health condition declining regardless of the unchanging status of disease. Though now that I look for it, even THAT might be the wrong word? Language is weird.
While EDS is so varied and there are a few people who have seen improvements in physical stability and strength through treatment, by observation of our communities, the common narrative is that with time and mostly the wear, exertion, and strain, (there is suspected hormonal changes that affect it as well) there is an increase in pain and weakness as well as comorbid conditions.
Thank you so much for your reply!
I often wonder about this; mostly from a fear point of view. My health has declined a lot over the last 7 years. The last 4 years have been gradually terrible lol and I was diagnosed with hEDS in August this year. I’m scared that it’ll keep getting worse and worse, and I have days when I don’t know how I’ll keep going if it does.
I’m trying physiotherapy and being referred to hydrotherapy but I’m only getting worse :(
Seeing others, like yourself, making videos and raising awareness helps so much to show me that I’m not alone, so thank you so much x
Did you ever go through a grieving process? My life is moving further and further away from what I had hoped and expected, that I feel angry and so so sad 😞 I’m not all that sure how to get past that
❤❤
*is sitting with crossed legs*