How I Get Around w/ Ehlers-Danlos Syndrome

I have a genetic degenerative condition called Ehlers-Danlos Syndrome, it affects/weakens the joints, skin, blood vessels, and internal organs; within the past few years, my standing/walking limits have steadily declined. Due to chronic pain, joint hypermobility (or laxity/weakness), the risk of injury, dysautonomia, and cardiovascular issues I can only stand/walk for a few seconds to a few minutes (average of 60 seconds) at a time depending on my symptoms, injury, etc. Currently, in order to walk I need very specific circumstances, I need places to sit consistently available to me, guarantees of only having to walk in short bursts, as well as the security of knowing the layout of a place in order to avoid injury. The rest of the time I am a wheelchair user, it is the safest, least painful, most independent, and most efficient way for me to be mobile. In this video, I speak candidly about the mobility aids I use and when I use them.
To learn more about what is actually happening inside my body with EDS check out my previous video "Draw My Body #ThisIsMyEDS"
• Draw My EDS #ThisIsMyE...
As well as "What EDS Is like on MY Body #ThisIsMyEDS" where I speak about how it affects my daily life:
• What EDS is like on MY...
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.

[@AnnikaVictoria24]

Forever amused by people's shocked looks when I hop out of my mobility scooter and jump in my local swimming pool. :P or my neighbours who don't understand when I come home in my mobility scooter then go out 20 minutes later walking "normally" (because I'm going two totally different distances, but they don't know that!)

[@AnnikaVictoria24]

Btw thanks for making this video :)

[@VickeyHungary]

Annika Victoria I love you Annika ❤

[@minibus9]

Hopefully more awareness will be made, nobody should be forced to explain themselves to strangers, unless perhaps for work or education purposes. In a similar way to you I always find it frustrating when people question or react weirdly when I tell them I am an Autistic individual who wants to be an actor.

[@lojohnson7087]

Swimming is so much better on your joints too. I'm glad I got over my water fear last summer.

[@ilovebrean]

Totally this

[@Myrrhinne]

Thanks for including English captions (instead of auto generated) for my friends who are Deaf, HoH, or ESL.

[@fjakjcwjcjjwjcch]

me and my auditory processing disorder are seconding this

[@hannahofhorror]

I love hearing people talk about disability. Can we just continue to normalise it pls lol Thanks Annie

[@mercedes.de.losangeles]

It's so great to hear someone saying that disability is fluid and can vary within even one person's case. I'm new to being disabled and I'm a dancer who has Lupus and Fibromyalgia and now needs a cane when walking up stairs or hills and sometimes to get out of a chair. I always worry that people won't understand how I can still teach my classes (with pain that I don't talk about), but then need a cane when we're rehearsing in the theater. Anyway, thank you for sharing. I'm learning a lot. Also, I love your Frida Kahlo knee-high socks; I own a pair just like them. 😊

[@alisonbarratt3772]

My daughter and I have EDS hypermobility. Her neck just kills her every day,she teaches bellydancing ,and other types of womens fitness, she hides her chronic neck pain from everybody because past experience has taught her that prople think she is faking the pain.

[@aprildawnsunshine4326]

Hugs from another dancer, though I lost the ability in my freshman year of a dance major. It's so frustrating having to deal with the judging you get moving from one mobility aide to another. I'm about to start driving again after my health took a downturn (from pushing through for too long so please learn from my mistake and take care) and I now use a power chair. I'm not looking forward to dealing with the stares and comments when people see me go from driving to walking around the car to riding a power chair.

[@judithdesrosiers-qm9wt]

Starred in film of this!

[@kellietipton1338]

Had no idea canes had a seat option.. thought a rollator was the only choice. This is why your videos are so necessary and useful ❤ thank you.

[@nathanesor6041]

Kellie Tipton I've worked with many disabled people and that cane just looks way too unsturdy imo. I've heard stories of it tipping over due to only three points of contact on the ground. I'd definitely recommend the FWW with the seat since it's much more sturdy and safe (especially when locked) and probably comfortable, and also has a storage option under the seat.

[@whentaniatalks]

It's so nice to know that I'm not the only one who needs to use a wheelchair but at times can also walk unaided. I sometimes worry that people who don't know me won't understand this. I never usually let things like that bother me, but with the stress I've been through this past year+ with disability benefits, it plays on my mind. I currently use crutches, and an active user wheelchair and have a knee brace, though I desperately need one for the other leg, the hospital are being very slow with sorting me out an appointment. To push my active chair, I need to use wrist braces. I'm hoping to be able to either get a power chair that will fit in our car, or power assist wheels. But this is fund dependant. I'm so glad you've finally got your power chair and that it's everything you need it to be. Xx

[@sarahsouthwell3480]

You have discribed my experience with EDS to a T. I've not been able to explain this as well to people I think I will just forward them this video x

[@mariajosedelacruzmontero1108]

I really thought I was the only one, and yes, I use all aids: cane, walker and wheelchair, but it’s hard, since “I don’t look disabled”. I feel the planet pulling me down and the pain makes it even harder to breathe. I am afraid of leaving my home. This video was really helpful. Thank you.❤

[@bridgethardigan5795]

My EDS has been getting worse and videos like this help me realize what my limits are and that it's ok to use aids. My EDS is not so severe that I need a wheelchair, but just hearing about the limits and possibilities was such a nice message. Thanks Annie!!!!

[@ndpioneers]

It is so hard to explain this. You did a very good job. I also have hEDS and MCAS and found out I have mitochondrial disease. Somehow with all of it combined I ended up with generalized dystonia which is the main reason I can't walk most of the time. So considering all that I'm happy that I am a part time wheelchair user and not full-time. There is one way I get around a lot that you didn't list. My husband helps me by pushing up under my elbow. I think it works a lot like forearm crutches would work. I can't use a cane because my hands, wrists and forearms are as unstable as my hips. I can walk around my house most days. Today is not a good day so I'm using my rollator. It's my favorite walking device. I have a really nice one called a Volaris Smart Rollator. I can sit in it and 'walk' very easily or I can walk behind and push it if I'm strong enough at the time. I can go from not needing it at all to just needing it for a little support to needing to sit in it or I will fall or even sometimes I can be so bad off my legs will cramp if I try to 'walk' while sitting in it. So my husband will push me while in it which they say not to do but I'm facing forward so it's pretty safe. We went to a convention this weekend and I needed my wheelchair for that. I stayed in it except to go to the bathroom. I paid extra for elevating leg rests that insurance did not cover but that is a necessity for those of us with POTS. I really hope to get a power chair sometime so I wont depend on my husband as much. I can't push myself in the wheelchair any distance at all. I like the EZ Lite Cruiser too. I've been studying them this week.

[@monicadahlin]

It seems you and I move around in the same way. But I'm glad I live in Sweden so I don't have to fight to get a powerchair.

[@rockabillymuffin]

Thank you for this video! I'm not using any mobility aids except for orthoppaedic inlays for my shoes. But I've considered getting a cane. I dont have EDS but Fibro kicks my ass when I have to stand or walk for a long time. Since I dont "look disabled" a lot of people get offended when I snatch seats on the bus or the train when its full. I sometimes just wanna yell at their ignorant faces that I'm disabled.

[@caseycasas2498]

I have several friends with fibro that have found canes to be super useful, both from a helping save spoons standpoint and as a visible marker of disability in public places. I got most of mine from FashionableCanes.com :-)

[@claudettemonty4077]

I have a power wheelchair, a 3 wheels scooter and canes!

[@itsaneel]

I've got a wheelchair that I bought when I broke my foot and it's been incredible since then for long trips standing a whole lot or anything, and also my cane, which I also got for broken foot that has made such a big difference in how long I can stand and how far I can walk. Sorta sad that it took an actual broken bone for me to start believing myself and how much pain and fatigue I deal with, but I have them now🤷‍♂️

[@HannahHodgson]

I've just had a referral to get some splints to help with my EDS pain in my fingers. I hope they work! My whole life at the minute is writing, blogging and my KZbin channel! I also an electric wheelchair and can't walks very far at all. Great video :) xx

[@Stuartette]

Does a cane ever make your wrist feel unstable? I have issues with my elbows and wrists. Would a cane help with fatigue or would I need a wheelchair?

[@tyfalcon467]

I'm suspecting EDS and my doctor's are resistant to diagnose me because I'm "too young" so I'm stuck in bed in pain all day miserable because I'm not being cared for.

[@stickergirl1750]

It's like deciding what to wear based on the weather. Sometimes it's sandals sometimes its snow boots. It's the same for mobility aids. ❤

[@annettes1432]

Thanks for this helpful video concerning EDS and different levels of mobility. I use a bandage for the right knee, northern walking Sticks for walking in the forest, and glasses in general. And quite new, adult diaper for Stress-Inkontinence GradI.

[@valerieannrumpf4151]

I have a neighbor who has EDS and we are always swapping horror stories about how insurance will not pay or will only pay for the cheapest piece of equiptment, or rheyll give us the runaround in getting that equiptment in the first place as I have CP, so whenever one of us has an issue with our mobility aids, we put our heads together and solve it as best we can. I have some advice for anyone that needs any kind of mobility equipment, make sure that you get an PT evaluation on exactly what stuff will work best for you based on your disability and lifestyle in order to be able to be as independent as possible, because if your mobility aide is not the proper one for you, it can cause alot of problems.

[@alexachronister2526]

Thank you for sharing this! You are incredible! We are always cheering you on!

[@WholeFoodSpark]

I'm so happy you got your power chair! :D Currently using a wheelchair, walker, knee brace, or nothing depending on the length of trip/distance/mood/pain levels. I know what you mean about needing the wheelchair but not using it because of a "short" trip (which always lasts longer than expected because I'm distracted xD). I HATE getting on and off the bus for like 2 stops so I make my husband push me or my friend pick me up. lol THANK YOU for mentioning SAFETY! That's the biggest thing I noticed when I started using a w/c. I feel much safer and my husband doesn't have to constantly watch me to make sure I don't fall. I'm tired of the "furniture surfing" lol

[@me0wmix884]

This is a wonderful explanation of how nonbinary disability is. I've struggled with bullying and accusation of faking my illness because it wasn't as consistant as what their perception of disability is. I have EDS, POTS, and Narcolepsy/Cataplexy.

[@happysophie774]

What a great video. I camt find the words to explain everything to my family or acquantaincies. I will show them your video instead 💕

[@carinajonsson7626]

ohh...😍 you and I are like twins. 😃 Thanks.

[@dianemacdonald6997]

I have a cane that converts to a standing chair - a Flipstick - that is wonderful for coping with my dysautonomia. I opt for sitting on the floor a lot.

[@gloriakummer5357]

Thanks for sharing. I'm needing more and more help. The pain is just too much.

[@silviasubstance5125]

OMG! I'm off to the reumathologist on the 8th of June, been waiting for a year due to the insane waiting lists. I've had flat feet and allergic rinitis reactions, asthma and lung breathing problems since very early age. I also had to had my tonsils removed when I was wee cause they were getting infected all the time (starting to think that's part of the pack). I can remember having bad digestions since I was young, but when I got to 15 a serious tummy problem developed. I took me years of intolerance diagnosis, to pancreatitis, I finally got diagnosed with irritable bowel syndrome. Seeing that doctors never pay any attention to any of this food posionings (sometimes 3 a month, lasting 3 -4 dfays each) and always chumed with hyperhydrosis (sweating like if there was no tomorrow, sweating that you wet your sheets), I also commented on my Reynaud's phenomena, I used to feel that I got death on my fingers as I used to call it. I always wanted doctors to tell me why my freaking body seems to have all these weird flares and reactions to things. I was so shock to hear about the Brighton test. Yes I was always very flexible. I am 41 and crippled I can't even move my neck at all, the noises my joints make can be heard by people, the fact that my left feet clicks as i walk, that I am getting stiffer and stiffer. I get cramps all around my body, feet, legs abdomen, that I get weird reactions and flares on my skin. All this time I thought I had bone cancer, god knows, and doctors always brushed it off. I was never too keen on sport or heels, so I've always been sound and safe and I don't break that easy or dislocate, as yet, although my left feet bends so much sometimes that it seems like if I am gonna lose it. I been researching but i think this is what I have. Probably not to your degree or your type, but I am so sure now, also weirdly enough after my densitiometry my doctor has asked for an electro cardiogram which stroke me as weird at the beginning as I thought I had a bones disease, but it would make sense if they're trying to rule vascular DES out now. I am very pale, eye bags from as I say birth. It's my connective tissues, that is the mystery thing. I was right all the way. I kind of knew all the way. I just need to be diagnosed, I am 41.

[@angelabrown1412]

Hurry and get diagnosed before you get really stiff from age and then it will be harder to be diagnosed

[@whatsonmymind4848]

Oh my God! So many things you’re listing here I have too!!!! And I am autistic which seems to be very often the case with EDS. Where can I got to get diagnosed? Special doctor?

[@headbanger1853]

I have fibromyalgia, polyarthralgia and hypermobility spectrum syndrome. Even though I'm super flexible, I can't walk without aids and I'm in constant pain. I have a ton of mobility aids (forearm crutches, canes, rollator, walker and power wheelchair). It was hard getting past the embarrassment of mobility aids, but I accept my disability. I'm glad disability is getting normalized.

[@izzie9526]

I love how she's normalising disabilities. You never notice how common it is until you start looking. And that it's not just the elderly that use walking aids, heck I'm 14 and cant walk more than a few blocks

[@willames363]

This was great and extremely informative. Thank you

[@maggiemccarthy8766]

I feel like I needed this video. I've had JIA (Juvenile Idiopathic Arthritis) since I was 5, but for the last few years I've had a really hard time standing or getting around. Until about 6 months ago, I never considered I could use a wheelchair, because I can still walk. I used a rental chair at Nerdcon: Nerdfighteria, and now seeing you makes me think that I should maybe talk to my doctor about getting something to help me out.

[@caseycasas2498]

I always bring my wheelchair or scooter to cons! They can be an epic lifesaver because there are so many factors at cons that you can't control when trying to figure out what you can/can't do with your energy/pain levels!

[@mockingjay478]

I can definitely relate. I don't have a diagnosis, but suspect EDS or similar. A lot of my symptoms are similar - though doctors won't take me seriously. I picked up a wheelchair for dirt cheap on Facebook (Buy Sell groups locally) and that's made a huge difference. I'm able to be out of the house for more than an hour, with around 4-5 hours as my limit, without being in massive pain or needing to take Tramadol. Yet I worry about how others may view me if I am not using the chair full time. I get questions from neighbours and random people who have seen me without the chair. I needed this video, and it helped me so much to remember that even with a diagnosed disability, mobility aids are not always full time and it's valid for me to self-regulate when I use it according to when I feel I need it. So thank you.

[@Skypuppy490]

I just got some crutches to help with my RLS and peripheral neuropathy! They aren't forearm crutches (they were out of my price range), but mobility aids are amazing! I didn't even realize how hard I was working in order to just move my body until I started using an aid

[@calibateman]

Love your videos, helps me keep the positive attitude knowing I'm not alone on my bad days.

[@theslopchop]

I totally understand. This is me

[@AngelaHepp]

This was so helpful! You are a joy to watch and listen to. I'm a newly-diagnosed zebra and your newest subscriber! ❤️

[@010101Be]

Omg. You totally need my cane! It flips open to a seat to lean into to take the pressure off whenever I need to stand longer. Otherwise, before I had this, i would often sit on the floor/ground wherever I happen to be. Then folks come asking if they need to Call ☎️ someone, like ambulance. 😂 It is from Comoy’s of London. Ordered online. Leather sling seat is comfy. It is my favorite!

[@janetpate393]

I have a waterproof power wheelchair called Magshock, a fold up scooter called Luggie and an Electric bike. I also have a cane that I use once in a while. I will not sit at home! I love being out and about with my husband or the whole family. I can only walk a block and then I’m done. People tick me off thinking if your not wheelchair bound your faking it. They don’t live with my body, they couldn’t handle it.

[@susanwilliams2392]

I don't have EDS I have a rare long-term migraine (vision problems, extreme light sensitivity, intermittent pain). I have different aids for different circumstances: a white cane for walking long-distance and/or bad light conditions. Multiple pairs of sunglasses for different light levels. A mask I can slip behind my sunnies to block all light. A broad brimmed hat to block glare. Accessibility apps to aid, or replace, having to strain myself looking at certain things. Like you, what I need at any given moment is very fluid. Also like you I have my home set up to make things easier for my disability

[@animeemo3tt3tt71]

I need to leave my house but I can't walk. I need a powerchair and occupational agrees, but it won't fit in my house so my only option is to fund it myself. but I can't afford it. so, at the age of 24, I'm housebound...

[@shinu1923]

I know this is old but I have some advice. Get a pediatric power chair (if you can fit in it anyway, they are far more compact and can fit through narrow doorways if your house doesn't have accessible doorways) and wheelchair ramp for the stairs up to your door off facebook market place. I have sedn brand new chairs go for less than $100. Get bed bug spray, flea spray (raid makes ine that does both of these), and a powerful disinfectant spray that is made for leather furniture and clean it good so you can avoid sickness and infestations. Also if you can't find a wheelchair ramp, you can get a plywood board for cheap and use some kind of waterproof glue or tape (flex seal for tape and gorrilla glue for glue) abd pasten it to the stairs. Also make sure it's at a very sligh angle. It should be very long. Power chairs aren't very powerful so the less steep the better. Also, if you can't find a power chair, you can get a manual chair and a cheap power scooter and you can attatch them tigether to make a makeshift power chair.

[@Tata-iu3fy]

I recently went to my local Fred Meyer, and they have several mobility scooters for customers to use. They all said out of order. I asked a cashier if she could help me find one. She made a call and said they would be bringing me one soon. I waited almost 10 mins. I cannot stand that long without being in excruciating pain. I knew I absolutely needed to buy a few things and the rest could wait. So me and my son grabbed a cart and went to grab the need items. I had a cane so i just used that. By the time we were walking out there was a cart worker on a scooter asking me of I was the one who needed it. I was in tears by then trying so hard to keep them in. To make it worse there was a group of people and they were laughing, and they kept walking and looking back laughing. So I assumed they were laughing at me since I was walking so weird due to the pain in my joints and feet.

[@RebelliousStory]

Would love to make a video like this, since I use aids for my EDS and they are a LIFESAVER

[@me0wmix884]

Bethany H i'd tune in! I want to crate a channel as well. I have EDS, POTS, and narcolepsy/cataplexy. Our stories are so unique to ourselves amd so contrasted by stigma and public perception of disability.

[@paperstainedink]

Thanks for making this, Annie

[@jamiewallis3758]

I love your videos! I can no longer use a cane (after 7 years of multiple sclerosis some permanent damage left me unable to make more than a few steps, in the span of a week), but I now have a manual chair (who has not been named yet) and a power chair named Turner.

[@aprildawnsunshine4326]

Highly recommend a rollator/rolling walker with a seat. I've had one for years and I love it! Best part is how much stuff you can carry in it 😆 Also the ghosting by insurance hit home big time. Mine refuses to pay for the only person who treats my condition in the state and none of my other doctors will do much until I get seen for that so I've basically been without treatment since February.

[@WTFerpated]

I really want to thank you for this video. I'm really struggling with my eds. I started with a cane and looking at a chair now. And I've got a bad knee injury to top this all off. I was considering a manual chair but now that I know that it can effect my arms long term I think I'm going to go straight to powered. Thank you!!

[@punky19761]

I don't have EDS, I have Spina Bifida. It's extremely varied also, as far as how it looks. I use a manual wheelchair.

[@Kris_Phoenixx]

I'm learning so much thank you for making this series. I do not have EDS, but I do have a spinal injury (I had major surgery for but on bad days I have to wear a back brace and/or stay in bed) and it's so important to be aware and informed. Thank you.

[@Kris_Phoenixx]

lol not me coming back to this video after having been diagnosed last year 😅😅😅

[@TheZionrouter]

I was diagnosed w/ EDS yesterday. I have a pretty crappy knee brace and that's it. I'm in a lot of pain all the time but I live on the 3rd floor of a building with no elevators... Currently I feel like I don't "deserve" to be in a wheelchair when I'm out and about because I feel like I'm not in enough pain. It's a lot of pain but I'm still able to stand upright with great difficulty and I feel guilty if I ask to sit down. I'm sure I'll get over it in favor of my comfort but I'm worried about how my family is going to treat me differently.

[@rmsmith8098]

My doctor tried to get a chair for me and Blue Cross denied it because it is not a "neurological disorder". So frustrating!!!

[@tardislizard]

I love how you mentioned it being fluid. Such a good way to put it. For me, I've dealt with my knee pain long enough to be basically functional on the day-to-day, but I do have a cane I break out, braces and KT tape, and my walker (at mom's house, working on getting it here). Thanks for sharing! Your new wheelchair looks amazing, by the way! ^_^

[@KatieFrys]

Thanks for making this video👍🏻 I use an inherited manual wheelchair (long distance travel), walker (around home), rollator (church, doctor appts, etc), cane and grabber, as I can no longer bend over. Had to acquire a shower bench, toilet handles/rails and 3 strategically placed grab bars for stability. Haven't driven my car since 2013 (diagnosis) but finally paid it off in 2015...proud of myself! (Long story about the car, should make vlogs myself😃) Need a job so I can afford the equipment now needed on my car (drove w/ the state, now have restricted license). Still living with parents in same house for almost 30 years...since age 4! Graduated college '09 after quite a school career. Should make my own vids soon so I can verbally tell my story! Good for you and great info in your videos! Just discovered your content...thank you!

[@maxshrapnel8998]

i'm so struggling wityh having to get a wheelchair again. I forced myself to walk without a cane and to even skateboard and it has ended me up worse then i was before. My family just so is not supportive when it comes to having to use mobility aids. I don't want to let them down.

[@kittygaillot2286]

I have idiopathic peripheral neuropathy, degenerative arthritis of the C spine, and near completely blind. On my “good days”, when I have little pain and balance issues, I walk with both a long and support cane. I had to train myself to use both aids together when walking. On my “bad days” which involve severe pain, stiffness, and/or poor balance, I use a folding walker for mobility. I thought about a rollator, but for me, it’s too heave to lift when I climb the steps of my paratransit vans becaue my hands are impacted. Whereas my walker folds like an umbrella stroller and weighs only seven pounds.

[@jeannemarie3704]

My hips are really bad. It's so painful.

[@TheArtOfBlossoming]

Hi, I have hEDS only diagnosed a couple of years ago aged 41 but have been struggling with mobility issues for five years and with chronic fatigue and fainting episodes since childhood. I started using a walking stick but hurt my wrist - first brace - then switched to Smartcrutches when my ankles started causing issues - more braces - tried a supermarket courtesy wheelchair and it made such a difference that I bought my own (Enigma Spirit). I couldn't manage the 2 mile round schoolrun in it though (no, I can't drive) so I got a mobility scooter. I'm about to pick up some serious knee braces from the hospital in a few days. Loved your video, clearly presented. Thanks! Zebra hugs from the UK :)

[@sarablackwolfdancer9359]

I'm not as hyper mobile as many/most of us EDS'ers, but I have a LOT of pain, and I'm on Medicare and Medicaid. Neither really wants to cover braces, and they probably won't cover a walker, which wouldn't be very helpful without the braces for my elbows and wrists. If they won't cover that, they probably won't cover an ultralight wheelchair, which is what I'd need to get it into my car and out again. Because EDS isn't well known by those insurance companies, that diagnosis isn't enough to prompt them to pay for anything that isn't a documented injury. Because I haven't yet had a documented subluxation in my wrists or elbows (it happens all the time in my elbows, it just pops back in immediately), I have diagnosed "elbow pain". eye roll. Thankfully I can get a new C-collar every so often when the old one wears out because I do have documented neck stuff going on besides "pain".

[@annettesuterswiss]

Thanks for the information and input! I use good walking shoes with memory foam or hard insoles, and with protection for lateral ankle spred. A nordic walking stick when I walk somewhere which is not flat (I live in Switzerland- it is mostly not flat 😄), soft knee brace and knee braces with stabilization on both sides. Actually I am most mobile and in almost no pain on regular soft downhill skis 😁. Such a pity there are no slopes and mostly no snow where I live now. For good days I want to try trekking a bit more in the woods (yes, hilly) but as I have problems carrying a backpack I ordered a Wheelie wagon to put my stuff on it. I will see whether it will work for me.... For days like today (coach potatoe state) which are becoming more and heavier over time, I would probably be best mobile in a chair. But I am not there yet, I mean my mind needs more time.

[@howtomeetwomen-]

This was EXACTLY what I needed to tell someone but couldn't verbalize myself. I was excited to find a video, but they got all huffy and said it was too long, and why can't I just summarize it. :/

[@Jynxedlove]

I'm currently walking with a cane. I try not to rely on it when I walk, but rather use it as a safety net if my one part of my knee decides that it wants to try to get away from the rest of it, or if my ankle wants to see what it's like being a foot for a bit. Some days I actually *use* it more than others, and it's hard to remember still that I should take this stupid thing with me when going downstairs or out of the house because I don't start off needing it. Going into the pharmacy is easy enough if I forget my cane still, but leaves me open to a chance for injury. Going food shopping, I can use the cart for balance, but only if I'm making a pretty short trip or my back doesn't appreciate my weird postures. I prefer to go to somewhere like Costco and use the motorised carts though. I mean, they'd be helpful in smaller stores but just aren't available in them around here. Trying to walk a store like Costco actually also has me really anxious lately. I am still trying to set up doctors that know what I'm dealing with and understand it. I'm waiting on a proper diagnosis as well. Given by someone who isn't just a NP on the opposite side of the country who knows me mostly through social media (albeit for many years now). I at least have things set up for it in the coming months. But I had a serious ankle sprain that has wrecked my shoulder because of crutches, and the long term effects of instability has caused serious problems with my knee and hip pain and between that and my shoulder my back seems like it would like to cease to exist. It's been getting quickly apparent that if I want to still get out and do things with friends, like go to conventions and into the city, I'm probably going to need a power scooter. I might be able to handle a manual one, but with a shoulder that already's been diagnosed as having a chronic subluxation that seems like it would not be worth the damage it would do. I'm still really mobile over all, but most of the things I love to do most besides video games require a lot of going from point a to b to c. I don't need to walk to do them, but I can already feel my butt clenching for how badly insurance is going to screw me. I do have a lot of internet friends though, some with a bit of reach, so I might be able to get a go-fund-me or something if insurance won't and a doctor who knows what they're talking about agrees it's not a bad idea. Despite what feels like self-diagnosis right now I've always been overly worried about being a hypochondriac, but then again, my mother told me I was being one whenever I said I was in pain or sprained something, so I guess that's not too surprising.

[@alecwinner]

If you do get a seat cane I'd definitely check the weight on it, some times they're quite heavy and not really usable as a cane for some people. Neat video, and sorry about your troubles with insurance #thespooniestruggle is real.

[@fragilefleur]

I can relate to the standing in pharmacy and grocery line pain and have used the mobile carts in the grocery stores when needed. I find that the regular sized shopping carts with a lower rack offers a place to 1. Lean on the handle as needed and 2. Put a foot on the Lower rack offering another pain relief position while standing. It doesn't relieve it but it occasionally helps. I haven't used any wheelchair yet but have wanted a mobility scooter for a long time to get around in public spaces where people can walk and either enjoy outdoor or indoor spaces. I live in Washington near Seattle so everything here is steep hills and many outdoor activities that I wish I could do and wish I had a fat chunky tire chair or scooter to get around in. My partner and I laugh about me needing a four wheel drive scooter. I don't have eds but I have spinal stenosis and scarring on the dura of my lumbar spine which causes inflammation if I pretty much do anything. I also have osteoarthritis all over and it gets easily prob 80% more painful when I eat food with high sodium for whatever reason. I too have learned to pay close attention to my limits and have had some situations where I thought I was going to faint or have a pass out situation from the pain being so high. Where do you sit down when you do and how is that received in public settings? I always hate being so conspicuous and vulnerable in pain and so now I try to grab a scooter at stores if I need it. (Trips that are longer than 10-30 min (depending on the pain level that day and the meds I have taken and the sleep I've had.) I fully get why and how you would have each of those devices and have various combinations. I was using hiking poles in place of cane bc it made me feel much more stable. You should check them out. Some are super nice and easy to adjust and have super comfy grips and a cuff that goes around your wrist so you can let go for a second if you need to hold something or whatever. I have knee braces and various solutions but really really need a scooter. Smart of you to crowd source the chair you wanted! I like your channel. It's very intelligent and reality based. You are rocking being a person with a chronic illness and doing a stellar job at presenting your experience and ideas to others.

[@Daubenton951]

Well I don't if I have EDS but my friend at school thinks I do (she knows people who have it). So I try to educate myself about that; I'll see a doctor in about a month so we will check.

[@BetteFoord]

Thanks for posting! I also have a cane (with a seat), wheelchair & a powered mobility scooter. Hardly use the cane now, though, becayse I xan hardly walk. I have pots, ncs, fibromyalgia & apparently eds but I'm not convinced of the last one

[@annettes1432]

Does anybody know a good EDS -forum ? I would be grateful to get some tipps or a Link.

[@sarahpage6319]

I've been considering using a wheelchair for a while but I'm scared that if I do I'l have to "perform" my disability and not walk as much. It took me ages to even try a walking stick/cane because I reasoned that I could walk without one so I'd be judged. Then I got a stick and it helped me go slightly further, stand a little longer, move even when my back/knee/hip/ankle got bad. But dude, I'm limited to 3 miles per day *max* even with my stick and it's really not that far. It's basically to the GP and back, roughly a full day at work, to one shop in the city centre. More than that and I get increasing levels of pain until I can't even shuffle around the house.

[@pharmgrrl88]

I get around primarily by a transfer chair or if we go to somewhere where I can use it I use my Permobile power chair

[@shannongreenwell1278]

I have a cane and a Rollator that I use, I mostly use my cane though because I can’t use my Rollator for my work. I have knee brace and ankle pain brace as well as a wrist brace and a back brace.

[@sopchips6763]

Have you tried physio tape. It’s unbelievable at helping to stabilize joint, reduce inflammation as pain and “ better knowing where your joints are” (I forget what that’s called) nothing is a miracle with Eds but I see it as “chuck everything on the fire “ all the little notches of pain you can knock off the better! :) I’m saving for the powered wheels! Oh the thought of going for a “walk “ with my family ☺️

[@annsilliman6184]

yes i do

[@rmsmith8098]

Those of us with EDS must be some of the most misunderstood people in the world! I have been so judged by people who don't understand that I can walk sometimes and not other times.

[@dionfox7206]

I have two Manual wheelchairs I have a mobility scooter to I can’t but I would love electric wheelchair which is not possible at this present time for money reasons. I have not diagnose as a DS at the moment for a time looks like I’ve got it

[@Dungeonfreak]

I have mild hemiplegia/ cerebral palsy as well as JHMS and degenerative disc disease and use a stick/ cane partly because of poor balance and crappy joints and fatigue (I decided to get one because I was holding onto walls and fences when I walked) but it also helps me stand up straighter which helps my back. My mobility is better than yours but I find standing really hard it's painful and makes me feel faint and if I stand too long I go past being in pain and lose feeling below the waist. Currently I only use the stick but I'm considering getting a lightweight scooter like the the hotpinksun has but it's a lot of money

[@WhereTheBeaversLive]

I can totally relate...I have EDS plus inflammatory arthritis..but don't use any mobility aids other than the odd brace every now and then 😑 I guess it's more of a pride thing so far, and I think I am doing more damage by not using a cane or something more. I work full time and I have a hard time admitting to myself that I need assistance

[@gizmo357]

I do the same at home - most homes are set up for mobility aids to be used easily in home - so it is easier to use walls, couch, counters as balance points. Which aid used can also be dictated by handicap friendly environments at businesses. I just have very resistant doctors to actually prescribing aids beyond "buy a brace at the store"

[@wessyde9476]

Yes educate mee

[@Kez_abi]

Looove this video love u xx

[@Carlie_flower]

I have a wooden cane that I love but eh just isn't right all the time. I use knee braces a lot too. Just got some new forearm crutches for bad days and I'm going to get a rollator soon I think. When I was pregnant one of my knees came out from under me on the stairs and I fell at 7 mo pregnant and couldn't get up or walk the rest of the week. So I think a walker will be nice for when I'm pregnant again.

[@Kayleebob]

After my last bad injury in October (eff you, EDS knees!), I used one or two crutches & a heavy-duty brace to get around. After about 5 months I got pink cane, and have most recently upgraded to a purple rollator with a seat. I use that now pretty much 97% of the time to get around both in and out of the house. I need some sort of support to be on my feet now at all times as my knees are my worst enemy in terms of stability and dislocations/subluxations.

[@suzettesanborn5659]

I used to use a cane and the orthopedics. Now I always use the rollater walker. I too would just walk without assistance in my tiny apartment., then I noticed that it really helped my pain when I always use the rollater.

[@PenguinGeri]

Man I wish you could live in Australia so you didn't need to deal with so much bull shit from health insurance.

[@luna.37]

I totally getcha, girl! I am here for ya - no, literally! Wanna sit on my rollator's seat?! Bet that's an offer you don't hear often... ;) I don't have EDS - wellll, not Dx'd at least - but DO have CRPS aka RSD, which has led to increasing dysautonomia as the years have rolled by... and roll by they do now, both literally, and figuratively. Ha. Great video, enjoyed very much! You're an excellent speaker, you convey sometimes complex medical concepts simply but well, and without condescending or boring an educated audience - like moi, haha. Looking very forward to checking out your other videos. Yay!!

[@shazdoryt]

I completely relate to this... this is my life. I also have EDS. I know what I need and I understand my limitations...but other people really don't get it... that has affected my mental state for years. I keep kidding myself I will be able to improve things, but EDS is what it is.

[@BridieTurtle]

I have EDS!!!!

[@skylarr2729]

My eds is just starting to limit my abilities and this video was very helpful. It’s hard to be a “healthy” high school student and need a cane.

[@meowmeow6676]

i really want to order a cane but i'm also terrified to do it😭 ableism is BAD where i live and i'm scared that if i let my disability show like that it will impact every part of my life post graduation (that's when i can get it earliest) and i don't want that

[@BreeNoelle96]

I have a closet for all my aids! 😂 A brace to stabilize hip joints if I know I'm going to be walking a lot, a cane for not-so-bad days, forearm crutches for regular day-to-day activities (like going to University), and a lightweight rollator walker for the really bad days. Every day is different, and I don't need the same things every day. But I still get weird looks when one day, I come in with a cane and the next, with a walker. But you do what you have to!

[@louiskat1900s]

yep. I've been progressing to a electric wheelchair rather quickly, but still use a walking stick most of the time unless I know I'll have a long distance (shopping or going to the city). I still feel like a fruad using a wheelchair but keep reminding myself that it make my life enjoyable and means I can have adventure with my... almost 5 yr old (OMG when did that happen lol)

[@xoxogossipgreen]

I have orthotics that I wear whenever I'm not in bed, and then I have a knee brace which is great, and I need to get more braces cos they help So Much! And then I have two canes and they're floral and I love them. I've got collapsible ones because I still can't really recognise which days I need them, so I try to keep one in my bag at all times. I'm also thinking of getting a walker with a seat because yeah some times I need to sit down unexpectedly or need to carry something heavy

[@WackyLisa]

I too trashed my upper body joints with my manual chair. I have a 4 wheeled walker I like but can't get it in & out of the car myself. Usually I use a support cane and fidget a lot to avoid standing still. Only recently can I get myself off the floor.

[@azurechaos5353]

I've never really thought about my mix of aids, they just kind of 'are'. I stopped using a walking stick (cane) a few years ago because when my knee would give way I was using the cane to try & catch myself & I was usually falling on my face and it was doing damage to my shoulder. So I looked into crutches, I'd planned on just getting the plain old kind they give you at the hospital if you break a leg but I came across the Smart Crutch. They've been awesome because it takes so much of the pressure off my shoulder as it rests more on the forearm & I'm much more successful about stopping the falls. Most of the time round the house I use one crutch, if I'm going out & it's just a short walk I'll usually just stick with the crutch (usually one but if I'm feeling really unsteady at the time I'll use both). Then I have a manual wheelchair and a mobility scooter, they trade out when going anywhere of a longer distance, if I'm going on my own then I'll usually take the scooter but if I'm going with someone we'll usually take the chair because it's easier in tighter spaces like shops. I've been looking into a powered chair but I keep flipping back & forth on it. On the one hand it's a lot of money on the other I'm getting issues with reaching forward to use the controls on the scooter (along with MS I also have osteoarthritis in my neck & a degenerating disc which it now seems to be pressing on the nerve root to my hands so certain positions mean I get weakness & pain in my arm & fingers, and I have a question mark over hEDS which I'm still trying to get a straight answer on from my rheumatologist). I can walk a very short distance without aids but my balance is so awful I don't usually feel safe to do so, the only place I tend to go without any aid is in the bathroom & that's because I have a billionty hand rails lol. I don't use braces but I do sometimes use kinesiology tape to support my knees. It does confuse people who don't know me who might see me using the wheelchair several times then they see me with the crutches (they usually assume that means that I'm "doing better"), or if it's someone who usually sees me using the crutches & they see me in the wheelchair then I get asked "What have you done/what happened?" Life happened people...life!

[@ReyOfLight]

I have EDS as well and use a manual wheelchair independently, but think the time has come now for a power chair as my shoulders are hurting more and I’m more easily fatigued. Mobility wise it seems like we have a lot in common!

[@stellamarten995]

I have eds

[@user-pz3if4pf2y]

What kind of shoes are those?

[@corenisveryconfused]

I wonder what I'm going to need to do I have EDS and have been falling a lot I got my EDS dx right before the pandemic started and haven't had much of a chance to discuss everything I need to with doctors, but I'm supposed to move out relatively soon and I'm not sure how I'll manage getting around on my own as is. I think I'll hurt myself a lot. Heck half the time I take a walk now some one has to ask if I'm okay (I should probably... stop doing that? I end up in a ton of pain after every time and I basically always fall, and spend much of it sitting down anyway). The only mobility aid I currently use is my service dog helps me up and gives me some support, which does help but probably isn't enough. Eh I'm open to any I just want to be able to move around. I just hope when I get the chance to talk about it with a doctor it goes well.

[@davidclarke4301]

Bicyles. I really am thinking about a chair. I keep injuring myself. But it'd be nice if it were pedal powered so I can still exercise. My walking stick keeps dislocating my thumb when I roll my ankles too. So I may have to re-think that. We all need exo-frames. With built in wheel seats. Or a small mobile crane to take the load off. Thanks for sharing :) Didn't know about the stool canes :)

[@claudettemonty4077]

Is the legs picture are your legs?? It can be mines!!! I have EDS too but to see legs like mines! Lol!

[@theroyalone7588]

Is Eds tha same heds?

[@artfanatic666]

I have EDS too. My spinal orthotic by Therapeutica is my favorite aid. It basically supports my spine without me losing muscle like a brace. I use in my chair at home ,in the car ,and in my wheel chair. You should see if it interests you.