Coming To Terms With EDS (A Health Update)
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- เผยแพร่เมื่อ 25 ก.ค. 2019
- Thank you all so much for watching, ilu ❤❤❤
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No matter what you do so long as you enjoy it your followers are going to love it. Please make all of the videos you talked about here just because you want to.
"Just because I lost my sword doesn't mean I forgot how to fight"
You have amazing wise creative brain,your view on life and other things is extremely interesting. And your voice is soothing,calming,beautiful:) so you have lots of talents, that's why eds playing tricks on you will never win.
Oh my word Aaron, you just spoke to my soul. I grew up dancing and doing ballet. It was my whole life and identity, but once I got sick I felt like I lost all of that. It’s been years but this month I started to do yoga and all of the feelings I had toward losing dance care up. I’m going to share this video with my loved ones in hopes they will understand my feelings a little better. Thank you from the bottom of my heart, I didn’t know I needed this video.
Hi Aaron, I also have EDS. I know we hate when people try to talk to us as if they knew more about our own bodies than us, but that really is not my intention. I am just worried with the progression of your symptoms... many of us have more than one condition; have you looked into degenerative joint disease? It is also called osteoarthritis and occurs in hips, knees, hands, ankles and pretty much anywhere there is cartilage to wear or tear down. Thank you for the video, I love to see your mature views on life, they help me a lot. Wish you all the best, my friend.
You aren't done growing as a person, and you are impacting so many lives by being open and educating others about your disabilities. Thank you and I love you ❤
Fellow zebra here! Currently typing with a sublaxed knee. I find that trying to explain to people that sometimes I can so things and sometimes I cant is frustrating. It's really nice hearing you explain it. Sending you big virtual hugs....not literal ones because...ouch lol.
For practising Art, it might really stabilize the fingers if you either tape them, or ask your occupational therapist to make Finger braces for you, that prevent overarticulation in the joints.
Not your usual guy Awesome idea! I wear Oval 8 finger splints for my hyper mobile digits, and they’ve helped a ton with stability and pain!
I’m getting silver ring splints soon and I’m really hoping it will help
I love your little rat teddy in the back ground ♥️
Yasss
I really appreciate you talking about how disability affects us as artists.
Thank you for being so open about EDS and the struggles it can be really helpful
Thank you for sharing, it does make me feel less alone. I also have EDS, and i’m a trans ambulatory wheelchair user and artist. My condition is getting worse too, and it can be a little overwhelming. I look forward to your future videos. I will say i’ve had success with drawing, i managed to sell enough stuff and save up enough to buy myself a real nice iPad Pro, which is i think the best drawing tablet. The reasons i love it is because it’s the only thing that does a great job of simulating traditional art styles, it really can feel like sketching with a real pencil on paper. But the thing that makes it great, is the apps allow adjusting the sensitivity, so i can setup the stylus so the amount of pressure needed for the darkest lines i want to sketch, is just a little softer than what my joints can handle, and i can adjust it as i need to so if i’m having a stressful week and cortisol’s softened all my joints and everything’s popping out, i can adjust it to need a lighter touch, without having to carry around tons of different hardnesses of pencils and notebooks and stuff like that. And it works as a power bank too so i don’t have the weight of that in my bag anymore when i’m in biped mode. It’s also really helpful that in digital art, undo exists, so if i’m having trouble controlling my movements accurately - maybe a bad pain day - i can draw that line again a few times until i get it right. I also like it because the stylus is about as thick as a typical sharpie, so i can get grips and put them on it to make the stylus easier to hold, or even use something like sugru to make a custom grip. there are some really interesting finger grips available for folks with connective tissue disorders that loop around the finger so you don’t need to apply pressure to hold the pencil with finger friction, you’re only guiding it’s position. Looking forward to exercise videos. I only got my first wheelchair about a week ago so i’m currently going through the process of figuring out how to add more protein to my diet and figuring out the right ways to build up strength in my thumbs and wrists and arms and shoulders. Anything about that would be super helpful to me. Subscribed and turned notifications on 💙
Phoenix Fox 💗🙏🏼 thanks for sharing this!!!
I’m a musician/artist who also struggles to play and make art now. Thank you for making this video. I just found your channel and I feel so safe and welcome and much less alone!
as someone who has fibromyalgia and very hypermobile joints i love videos like this that make me feel less alone. im a student and i cant work at the same time (yay chronic fatigue and pain) and accepting limitations is really difficult so hearing that other people struggle w/ it too is nice. also PT is great! if you have a good physical therapist
Literally same... im about to start seeing all my friends graduate and im barely halfway through my program. Sending you some love and kind understanding.
Also thank you for your comment. Ive never met anyone with fibro or chronic fatigue and pain, so I thought they were all superheroes who managed to keep up with this crazy world, while i was the lazy guy...
Augusto GT congrats on getting so far in your program! and i thought the same until i started meeting other ppl, i thought you had to be bed bound or unstoppable but when i found others in the middle it helped so much, thanks for you kind words and best wishes to you!
It's always great to see someone else understand it. "It's just pain" and letting things limit me but I literally can't move
JustThatOneGuy29 me too :( and its difficult when others dont understand but at least we have each other!
Thank you for talking about this and being able to have chance to mourn how your life was before. It gives you a chance to embrace what your life will become.
I can't draw traditionally anymore because of EDS, so I'm doing digital painting with my fingers.
And yeah your videos are really useful!
Arron, no matter the topic and whether or not it relates to myself directly I always find myself genuinely interested in what you have to say. You always bring thoughtful perspectives and insights. Also, complete side note but I feel like your voice is just very calming and nice to listen to. LOL
This means so much to me omg thank you SO much ❤️❤️❤️❤️❤️
i would love you to talk about how your art is changing!
Aaron you are a true joy to watch, & your IG music videos are so calming. Your EDS can't erase your memories. It's just a matter of readjusting your life to your Disability. Sometimes it's hard, but above all else be kind to yourself.
I would enjoy seeing more videos related to your EDS. ❤
Thank you. This means so much to hear someone vocalizing a lot of the things that I think sometimes about my body and my eds
I also have progressing EDS, RA, fibromyalgia, migraines, asthma, etc etc etc ( my joints and tendons are slowly becoming more damaged thanks to the RA meds not working, so I FEEL YOU SO MUCH with the dislocations getting more frequent, harder to undo etc esp knees wrists hands typing this hurts so much of my previous “ normal stuff” and JOY stuff can’t do) It is so scary mentally, having to build a new me. love and comfort and pain free moments to you ❤️❤️❤️
Looking forward to your future EDS and exercise videos. Your EDS symptoms are very similar to my son’s, Jiah.
I know the feeling of feeling like your body is falling apart. I’m not diagnosed with hEDS(yet), but lately I’ve had a bunch of things hyperextend and dislocate more frequently, along with struggling with my POTS more.
But an important thing that I desperately hope you read is that hypermobility finger splints exist! They’re a lifesaver, and I don’t have any medical grade ones but made my own out of jewelry wire. They might help with art and such by stabilizing the joint. Good luck.
Oh I totally feel you on the being able to cycle but not walk thing. I have EDS as well and riding my bike has been my coping mechanism for anxiety and autism for a long time. It’s getting harder as my EDS keeps getting worse but I’m still able to cycle long distances without too much struggle. It’ll usually be quite painful but I don’t usually dislocate anything and the mental benefits I get from it I’ll take over the pain any day. But walking is just too hard a lot of the time. It’s something about the way your joints are under stress that makes walking so difficult in a way that cycling just isnt
Hey Aaron, I just wanted to say thank you for being open about having EDS and being disabled as a whole. While I don't have EDS, you have really helped me come to terms with having arthritis throughout my body as a sixteen year old. You're an amazing human being and I hope you continue to empower those around you
It's always good to hear how you're doing, so updates videos are great 😊 Also, I wanted to tell you I got 2 adverts before this video!!! 🙌🙌🙌
As a musician myself I can only imagine how hard these difficulties must be for you. While I was listening to you I remembered great artists who had disabilities that could have stopped them completely but didn’t, and the world is thankful that they kept making beautiful art, even though it had to change with time or they had to change the way in which they could produce it.
Beehoven went from being a concert pianist to exclusively a composer as he went progressively deaf. He never heard his famous Ninth Symphony! One of the greatest painters in the world, Claude Monet, went nearly blind but kept painting until the end, and even his late works are recognized as masterpieces. Brazilian sculptor Aleijadinho lost the use of his hands and most of his arms through a degenerative disease but kept sculpting nonetheless with tools tied around his arms and his works are some of the most important Brazilian cultural and historical monuments of all time (I was lucky to see many of them in person).
Boy, this is a mood. I feel heard.
Thank you for sharing. Our struggles do not define us. You are an amazing artist no matter what you choose to do.
That sounds really tough and scary. I'm really glad you're sharing about this. I'd love to see your updates relating to accessable art and music in the future!
It’s so weird that you did this update now.. I just found out 2 weeks ago that I have a degenerative disease. It has been the biggest roller coaster of emotions.. I would love if you started documenting your journey! If you ever want to talk - I’m here ♥️
Thank you for sharing with us, Aaron!
Hey Aaron, I also have EDS. I was diagnosed after my pregnancy, and since then my body has deteriorated faster and in more ways than I thought possible.
In a way, I’m sort of in mourning for the life I had, and the life I thought I would have. I’m afraid of what happens to me as I age. I’m afraid of what this probably means for my little one, who is showing early signs.
I am still learning how to hold both hope and acceptance. It’s a struggle every day.
Thanks for making this video.
This video is so good Aaron
I totally get where you are coming from. I have EDS and sitting here with subluxes in my neck. I’m on vacation and it’s been really interesting to see how much I have accommodated for myself without thinking about it and having to explain over and over to family. I feel like i’m still coming to terms with EDS and Co, it was great to hear a bit of your perspective
I just found you and I just got diagnosed myself along with pots and mass cell. Thank you so much for recording. I don’t know anyone else with this stuff. ❤️
Yes please make videos about EDS and exercice, and art, and everything! I'm really trying to understand this condition for some reason, and I would love to have your experience!
Also do you use finger splints to prevent a bit the disslocations when playing music?
This was such a validating video on so many levels. Thank you ❤️
Thank you for sharing this
I'm glad you shared this... because you make visible wat is not visible. You make a difference because you share this in a wright honest way. ♥️
You're so wonderful Aaron. Thank you for the update and I'm looking forward to any of those topics you listed and more! Take good care ❤
you're such a wonderful human and I very deeply love and appreciate your existence and content
we love you so much Aaron. we support you through and through. in this world, we take what we can get and even if you can't continue to do a certain thing, or have to find a new way to do it completely, you are you. you are an incredible lovely person and care more than anyone I've ever known. keep living, love.
Aaron! Thank you for your videos!!!! I would love to see you do videos on exercise and EDS-just got diagnosed. You are a great encouragement!
Hearing you talk about EDS is really helpful to learn more and more things about it so I thank you for that. Can't wait to watch all the videos you mentioned here and more and any other art you create, you're one of my favorite artists!
Aaron I love that you make wholesome honest videos about your struggles with your health. I don’t have a diagnosis of anything yet but I have chronic pain and fatigue and no one ever understands because I’m only 24.
I recently went to an amusement park with my wife after going on a 2 mile hike that morning and in total walked almost 10 miles that day and it’s been almost a week and I’m still really sore and exhausted and limping more than usual. So when people see me limping and ask why and I tell them that I walked around a lot last Thursday they just stare at me like I have 10 heads because most people would be tired for a day or two but would be fine after.
Anyways, I just want to say thank you for being open and shining light on topics that are rarely talked about. You make me feel heard and seen. I love you. Take care of yourself 💙
you're just such a great human being. i'm so glad to have a small window into your journey on this earth. thank you for sharing.
I'd love to see an EDS footwear video!
i know other people liked this (including aaron himself) but i gotta emphasize this one:
*pls* eds footwear video, shoes are so annoying and difficult in about a dozen ways. advise me, pasta dad
Jensen Caldwell YES
Thank you so much for this video! 🙏🏼❤️ I have a friend with EDS & this is very informative for me. I don’t know if she has the same symptoms etc as you do, but I’m very thankful that I get to learn more about it. Stay safe! ❤️
❤❤ so much love! I've been in situations where what I love to do is impacted by some outside force and what you said is so true- you are the artist. you have all that creativity inside you and it will find a way. Just keep tuning in:) All this to say, you got this! :) P.S. I'm excited for whatever comes next in terms of videos!
Love you, bud. Keep on keepin on. I'm glad to hear that you are working on finding healthier ways of viewing you self worth in a time where some of your abilities are changing. You are a positive addition to my life, since I've started following your channel and such, and I hope you keep it up, so long as it's also a positive experience for you.
Thank you so much for sharing. I’m going through different things but in a way our struggles are similar. Reframing to think of things more positively is so important. I have had to take my second medical leave from art school and it’s been really hard to keep up with any meaningful projects since I left the first time. I really like how you said that the art doesn’t make you, you make the art- it’s so easy to feel like my art defines me when really I am constantly using my creative eye and way of thinking in my day to day life even if there aren’t any grand products coming out of it. I am still an artist and designer, I don’t stop just because there isn’t a golden finished product to show for it. Keep on keeping on, sending solidarity and good vibes your way ❤️
You're so well spoken and have a nice voice
I love you dude. I just finished my first painting in a while, and I thought of you. Sending you all the good healing vibes. You're so strong, and I'm so proud of you all the time. I consider you a friend, even though we don't talk (honestly it's kinda awesome like that, just tagging you in tweets and enjoying your replys). You can do this, I'm glad you're enjoying physical therapy!!!
(Ps, hope none of this came off creepy. And if it did, that was not my intention.)
The male model for MoveU (exercise/body awareness program) has EDS as well.
And my friend struggles with being a musician who has EDS as well and i know it gets her down sometimes that she cant play.
I feel you, Aaron. As someone living with cancer I find I have changed so much since my diagnosis in terms of how I view my limits. I'd love to learn more about this part of your life through how you choose to create videos, and I'm sure it will be mutually beneficial, emotionally, for both of us. 💜
Aaron, you’re such a kind, intelligent, sensitive young man, it breaks my heart the things you’ve gone and are going through, but you have the most amazing attitude and perspective and so much heart.
Following your videos and podcasts has helped me a lot and I can’t help but love you for it. Don’t ever stop being the amazing person you are.
😭😭😭 I love u so much bb 💖💖💖
Whatever happens in your future, I wish you all the best my dear
I feel bad that you have to go through this, but I'm glad you're trying to find the positives in it and learning to adapt as your body changes and your EDS gets worse. When I was in grad school, I did a little research on limited mobility and art. I don't know how that would work with an illness that affects so much of the body, though.
We really care for more than just the art or these videos. It's not much to be able to say, but you are worth more than you think.
Thank you for talking about this. You're the closest to me that I've seen in terms of like EDS symptoms and in general and stuff. This is making me really scared because I'm 18 and doing way more than I should be and I'm terrified of not being able to do what I love.
Hugs Aaron hugs.
Fellow EDSer❤️thinking of you
The chromatic or diatonic harmonica is a great instrument that doesn’t requiere use of fingers !
Damn this is sooo damn relatable. Thank you for sharing this ♡ it helped me with how I view my own disability witch had been hard to deal with.. thank you ♡
I love you and your channel. I am also trans and autistic and an artist and I have a hypermobility disorder too (currently I have an HSD diagnosis but it could be cEDS). I really relate to and appreciate what you said about being an artist. It can be really frustrating to not be able to do my art as much as I want to with this illness and you worded it very beautifully.
I will pray for you Aaron.. I care about you! The Lord can heal you completely and set you free!
Thank you for sharing your thoughts and feelings around this. I'm a bit like you, I'm an artist and I like being active but chronic pain (unknown source) has been getting in the way of that. And I also do that thing where, if I can, I'll do the things I love like painting or waking long distances even if it means I sacrifice a few days of regular hand/leg use afterwards. I think it allows us a sense of normalcy and excitement about life to make those sacrifices vs spending every day saying no to things we love bc we know it'll make the everyday things harder. I'm hoping to find out the root condition that I have so I can take those risks in a more educated way, though, and hopefully release some of the fear around the various conditions that could be causing my pain and limitations.
Aaron ,
You are an amazing person. A very talented artist and a great role model! Have you connected with an occupational therapist at all for splinting your fingers and thumbs? Working with a good occupational therapist can help to manage your symptoms, pain, and keep you functioning! I know EDS is a moving target with dislocations/ subluxations and the marrieds of other symptoms that can occur. Occupational therapist’s specialize in adapting and modifying tasks to meet the needs of the individual to keep them independent for as long as possible. If you haven’t already connected with an occupational therapist I would encourage you to. We can help!
Be Well,
Tobi
I've become kind of a hermit this summer because my eds has also been worse (specifically GI symptoms, I've lost like 20 pounds) and discovering the dragon age games has given me a lot to do (aka my constant special interest for the past 3-4 months) but a consequence of my Elite Gaming is a lot of hyperextending and subluxing my fingers. hopefully thisll be the push for me to schedule the gastroenterology appointment I've been needing to for months
I know someone who has EDS and uses finger splints - they kind of look like stylish rings. I remember them saying they weren't super well-known. I am not sure if it would help. Maybe it is worth looking into? It is hard to struggle with passions due to disabilities interfering. I know it all too well.
Getting into digital art and electronic music sounds like it would give you more options! I don't have eds but do understand adapting your life for disability and mental health reasons. Personally I'm using text to speech for reading now because of executive dysfunction, and learning British sign language so I can get by more easily around auditory processing disorder.
And the coolest thing about it is that both music and tech have a lot of trans people involved. 💖 A professor who I had the best conversation about my psychoacoustics research with was a trans woman, I lost touch but it says a lot I think. So the crossover of music tech with trans musicians has got to be big xD
Have you tried finger splints? They might give you enough stability of the back/forth side/side movement in your finger joints. Not sure if jewelry is hard for sensory stuff for you, but if you do try them, maybe try to get cheaper ones or try rings to make sure they don't drive you nuts. Good luck!
Thanks for sharing your reflections Aaron. I do not have EDS, but I can tend to equate my value as a person with what I can do / have done. I think western societies maybe perpetuate this view? I like to hear about about is happening in your world, and you explain things in a way that really makes sense to me.
Thank you for talking about this ❤️ I'm currently suspecting eds and looking into it and just mentally preparing myself to bring it up with my gp. I have dealt with fatigue as well, but that seemed to have been caused by birth control. I quit it when I started t and I have way more energy now, but now it's hitting me how shit my joints are. It's kinda infuriating to suddenly have energy and still not be able to do shit. I kinda want to look into getting a wheelchair, but I wish I could try out a decent one. A while back I fell getting on a bike (one with a bar, mine doesn't have one luckily) because my hip gave out and hurt my knee so that I couldn't put any weight on it, I got a rental chair then, but it was waaay to heavy to self propel 😭 When I saw my gp he was like, nah you'll be fine, you can walk, bc I'm used to my cane.
As a kid I was very active but because of an accident a couple of years ago I wasn't able to be as "active" or exercise any more. I just found out I have eds and I'm really happy that I know that now but the pain is killing me. Because of the fact that I haven't taken care of my body in a while the pain has increased alot. I know I need to get back to training again but have no idea where to start. Please make a video about exercise tips and tricks, I think I need some inspiration.
I'm sorry it takes a turn for the worse like this for you... I wish you all the best to come to terms with it, Aaron! You are amazing, even without your art or music! Good luck tiger.
I would *love* and exercise with EDS vid series. I have hypermobility syndrome (not sure if it’s hEDS or EDS-related), and having some guidelines would be fantastic.
I don't have EDS or anything but like I have knee issues and I relate to having stuff you used to enjoy that you can't do or you can't do the same.
I dislocated my knee and basically neither of my knees have healed properly from that (and they apparently have a natural tendency to dislocate because they're in the wrong places, something I didn't know until I dislocated and relocated one by sitting down). Before then I was going on a lot of walks and enjoying being in fresh air and nature and taking photos but now I can only go for a long walk if I don't have anything I need to do the next day because if I do then my knees will hurt a lot and I might have to use crutches. I miss going on walks alone and enjoying the peace but it's hard to find sort of time when it's appropriate to.
I try to go on walks with my dog and one of my parents every so often but I can't do both so like I have to go with my dog because my parents won't walk him without me and I can't walk him without them so there's no walking and having solitude anymore really.
Idk I kinda feel like that's a bit like you not getting to like go on runs. I know it's obviously not the same but both things have that like physical activity and sort of relaxation in a way (like good for emotional regulation).
I don’t know if it would help but maybe you could relearn the way you grip your pencil? I’ve seen some things about putting it between the index and middle finger and just using the thumb to stabilize not grip. Or maybe the large pencil grips that were created for people with arthritis? I don’t have EDS these are just things I’ve seen my grandparents use who have a lot of issues with arthritis in their hands
I wonder if you could get into composing through electronic music as a creative outlet that won’t hurt you. There are so many different genres of “electronic” music. It doesn’t have to be “techno”
For music, maybe try getting a computer program that the use to make dubstep and remixes and then music making can all be done on the computer. Then you can use the accessible system on you computer to give voice commands so you don’t really need to use your fingers
❤️
I'm not a doctor so I realize that my recommendation may not mean a lot but have you discussed ring splints with your doctor? They are pretty expensive but they can help to keep your fingers from dislocating as often/as badly. It might be worth discussing them with your doctor.
I know this has nothing to do with the content of your video but I liked the background of this video 😊
🦓
I feel you. This morning both knees were subluxed and it was a bitch
Have you tried using finger braces? They don't help me play my bass which sucks but they do help with writing. I hope they would help you play your instruments.
I've never asked this before, and don't know if you've posted it before but is there a blood test for EDS? I know I have undifferentiated mixed connective tissue disorder, just wondering if my rheum should be aware there's something else I should be keeping an eye on? I don;t like that mine is "undifferentiated" just because so many things can pop up at any time, and then go away, it's hard to keep track of. :(
Info is good in this respect, thank you for sharing! :) I hope you're having a good week and hope you have air conditioning! It's hot up here even in northern Minnesota, most days I can't even go outside... GRRR!
You. Are. Always. Awesome.
Chris Moon Hi! There are several different types of EDS and most have a known genetic marker. However, hEDS, the most common type, has not had a genetic marker found yet. So for some people, a blood test can find a mutation, but not in the majority of cases (as of now).
@@elliotelephants60 Thank you for the reply :) It's amazing how complex our bodies are that we really don't know much about them yet in this area of autoimmunity.
Here's a stoner 80's thought.... become the best beatbox. If your condition doesn't effect your joints in your face yet, it might be easy. You know how all those instruments sound and feel. You could try to translate that into mouth and throat vibrations. You wouldnt have to be loud, just use a good mini mic so you can hear it without having to project your voice as much.... I dont know if that makes sense, but it's an artistic thought.... also, you could always try different paint techniques like straw blowing, spatter and funnel effect. All ways that you wouldnt have to use your hands as much... I'm a pencil and paper (primarily)artist and had aspired to be a singer once, but I smoke and my hand aren't what they used to be.
I think your quite the guy to go through what you do and still be so inspirational.
Even if my suggestions are silly, I hope you find an outlet that suits you. Good luck with your plants, too. I feel your past pain. Lol👌🤟🦄👾
Make videos because you want to. You don’t need to explain why you don’t want to preserve your walking for grocery stores and such. It makes perfect sense already. We all just want to do what makes us happy. Running, creating art, those things make you happy. You’re allowed to mourn when those get taken away or become really effing hard
Your much more valuable then your physical conditions
as a fellow trans / autistic / (probable) eds artist, you have no idea how much this video spoke to me ??? esp the part abt not being able to play your instruments and being an artist even if you can't make art
much love, keep doin whatchu doin
Hi Aaron,
I sent a letter to your PO box some times ago talking about me looking for a diagnosis and now that you are talking
a bit more about your EDS, I would like to know if you were willing to share resources with me because I am finding it really hard to
find medical professionals that are aware of EDS. I was doing physical therapy on private health care, but she told me that
she was scared to continue working with me because she did not know how to help hypermobile patients and the only way I could have access to what I needed was to get an official diagnosis. My family doctor does not believe in what I say and
will not refer me to anyone. I know many people will say, but I am not really familiar with
technology. I know its 2019 but i have been living under a rock most of my life...
By the way, thank you for your video, I feel less alone =)
One thing I think research should go into is making mind controlled limbs available to people with EDS who need these functions
If you had a mind controlled limb you'd be able to create traditional art without dislocating a thumb or finger
Je ne sais pas si tu connais la chaîne YT "Vivre avec", mais peut-être que ça peut te faire du bien d'échanger avec une communauté de gens qui ont ce syndrome aussi ?
Tu seras toujours un artiste. C'est à l'intérieur de toi.
I saw you at the conference and I was scared to say hi :(
aww :(
i hope you had a good time anyway, i've never gone but it always seems so Cool & Good & Useful
I totally understand where you are coming from. EDS is terrible. Chances are that it will continue to cause you pain, as it does for me.
For those who don't know, I think that what makes EDS hard is two fold. First of all, EDS brings along several comorbidities. I have five doctors for each one of EDS' partners in crime. How rediculous is that?
Secondly, it can isolate and depress you. As such, I am hoping that your group of friends includes another zebra. One way or another I think that you should come join us in the EDS groups on Facebook. We have a lovely dazzle going and all zebras are welcome!
Do you have any sort of GoFundMe or fundraiser to help pay for your illnesses? You should not have to be suffering this way. I’m so sorry you’re going through this.
I wonder if swimming would be easier on your body?
It is for me. I have EDS and it’s about the only exercise I can do