♿️Do I need to use a Wheelchair? 8 Questions to ask yourself 🤔

Do I need to use a wheelchair? How do you know you need a wheelchair? How to know you need a wheelchair? If you are asking yourself this question, then this is the video for you. For some of us who have a spinal cord injury, it can be obvious. But for others in can be a hard and difficult decision to make.
💎About me:
I’m Gem, and after my spinal cord injury at the age of 9, • ♿️HEART SURGERY PARALY... my life has taken me on many twists and turns, and finally led me to combine my passions of media and disability advocacy, et voila! Wheelsnoheels was born.
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DISABILITY CHATS
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[@pixeltheragdoll]

After being trapped in the house except for medical appointments because I can't self-propel, this week I received and started using my new power chair. For the first time in years, my husband and I went shopping and then lunch at a cafe! I didn't have to feel guilty about him pushing my chair and getting a migraine from it. I was able to stop and look at things in the shop. My husband was able to go look at other parts of the shop when I was looking at something he wasn't interested in. And at the outdoor cafe, I was able to sit in the sun AND I got to stroke a lovely dog named Molly! For the first time in years, I'm FREE!!

[@Fred2303]

I'm so happy for you!

[@pixeltheragdoll]

@@Fred2303 Thank you so much!

[@mrsr5689]

That soo good so proud happy for you so exciting to get see the 🐶 🐶 🐶 xx

[@pixeltheragdoll]

@@mrsr5689 Thank you 😁. I love dogs but we don't have one, so I used to get my fix by being a pet photographer and playing with other people's dogs. It was SUCH a treat to run into this little sweetie. Apparently I have not forgotten how to give good scritchies 🥰

[@mrsr5689]

@@pixeltheragdoll I have 4 pups and they are monsters to look after due to me having pots syndrome and mast cell activation syndrome luckly kids and other half help I love taking photos of them I do .

[@tonyab.2822]

My son is a part time wheelchair user and has been his entire life. He is 23. Some family members had a hard time understanding why. My simple answer is he can enjoy life BECAUSE of his wheelchair.

[@kaitlyn__L]

I wish I could’ve used a chair part time in school when my joints’ oddness were discovered (if people had listened to me about my injuries and pains!), or in college when it started becoming prohibitive to walk! I’m so glad you defend your son’s use of it. My own mother was completely against it, for the worst reasons, so I couldn’t even consider it until I’d moved out. It makes me really happy to know better situations do in fact exist!

[@AmethystWoman]

Your family and people like the people you're talking about are the ones who make me afraid to have a better life. Will the people who "really need wheelchairs" even be pissed at me for "making believe" I need one too. Medically my doctor would say I have lots of physical needs for a wheelchair but that doesn't help my mind be able to adjust to it as I've been in pain my entire life so what's different now that I'm 68? I'm afraid to admit I'm getting older I think.

[@tonyab.2822]

@@AmethystWoman Don’t be afraid to do what you need to do to live your life. It’s not for anyone else to decide but you and your doctor. Don’t let anyone stop you from living your best life. A wheelchair doesn’t mean your giving up. It just means you are finding a new way to enjoy your life! I said what I needed to the family members and then ignored it. They got over it and we have done many fun things with them. It is an adjustment for everyone.

[@tonyab.2822]

@@kaitlyn__L I am so sorry your mom was against it. Sometimes it is hard for moms to understand.

[@ZebraWheelie]

I'm a wheelchair user due to severe Ehlers-Danlos Syndrome. I fought against it for years, until i became practically house bound at the age of 23. Before my illness got worse, I was really outdoorsy. I used to go camping and hiking etc. But I had to give that up. Now thanks to my wheelchair, I'm able to get back to doing that! I'm a nature photographer, and I've recently been working on a project with the BBC. I would never have been able to do that without my chair!

[@ratsssssssssss]

I also have EDS, and am looking into getting a chair, I just wish it was easier to get one

[@Bendyzebra]

I started using a wheelchair due to combo of eds, fibro and autonomic dysfunction

[@crypticmedicine]

This gives me so much hope for myself! I'm currently 23 and have spent the last two years barely leaving my apartment due to EDS/POTS/spinal osteoarthritis/disautonomia. I have crutches and can still drive places, but I can't actually do anything that requires me walking anywhere unless my partner helps me -- and even then, it'll take days to recover from any single outing over about half an hour. I'm on several wheelchair assessment waiting lists but I'm terrified they'll deny me coverage because I can technically walk around the house, though I can't even do most chores anymore, which is frustrating. I want to get back to work or maybe go to grad school, and I just got a heart medicine that makes that more of a possibility... but also, walking is exhausting and I still injure myself regularly, even just walking around at home. I really hope they'll at least measure me properly for an ultralight (I sublux my shoulders if I try and self-propel anything heavier, unfortunately) so I can maybe go back to having a life!!

[@mrsr5689]

That sooo cool that sounds like my dream job xx

[@ZebraWheelie]

@@ratsssssssssss here in Northern Ireland it took me almost 2 years to get o e on the nhs!

[@juliehauser7652]

I struggled with the decision to stop walking and use a wheelchair. It wasn't until my therapist said "Why can't you do both?" That is when the light went on in my brain. I have PPMS. I felt choosing to use a chair was allowing PPMS to win and take over my life. On the contrary, using my wheelchair gave me back the quality in my life! I can stand, transfer, even walk with a walker for a few feet, but in my chair I live a full life with far more fun and less anxiety! My chair is a part of who I am. Great video Gem! Thank you for the reminder.

[@tiywinkles]

PPMS as well.The feeling of "Giving in to the illness" was something that kept me from saying yes to using a chair. I thankfully had a friend pull me up on it and ask me why I was so resistant to it. After pouring out my fears of failing and not winning against MS he acknowledged my concerns and said basically what your therapist said. So I got a chair and got my life back. I was able to go for walks with my family again which is the sweetest reward

[@StephaninasAmputeeAdventures]

IMPORTANT HEALTH CONSIDERATION: I've been a full-time wheelchair user for most of the past two years. I'm not paralyzed; I'm an amputee with complications preventing me from using a prosthesis. This makes a BIG difference. I was resistant to a wheelchair at first, until I sat in one and felt instantly liberated. Why didn't I get one sooner? I agree with your points, Gem, BUT there's a consideration I don't think you've thought of that's important for non-paralyzed wheelchair users. The fascia (it's the connective tissue that holds muscles, organs, etc. in place) gets bound up when the muscles aren't used, resulting in increasing pain the longer I'm in the chair. My physical therapist said this is very common in wheelchair users, including people with spinal cord injuries but if a paralyzed person doesn't have sensation or the ability to use his/her legs, then it's not a big problem like it is for someone like me. I can feel the pain, and the longer I sit in a wheelchair, the more my muscles atrophy, which impacts my hopes for walking in future, as well as things like my metabolism. Changes in posture can result in chiropractic needs. Basically there's a domino effect. I definitely don't think people should put off getting a wheelchair if they need one, but it would be wise to discuss your full medical situation with a doctor and physical therapist to make a plan about how much of the time you're going to use it; are you going to try to prevent muscle loss; if so, how? What about prevention of chronic pain? Basically, a wheelchair can be delightfully liberating and you'll have the best experience possible if you work with your medical team to plan ahead for potential problems. Even given my setbacks, every day I'm incredibly grateful for my wheelchair.

[@artemisb.5853]

I think this message is very very important. But I wanted to add my perspective as a person who uses a wheelchair part time primarily for chronic pain and fatigue. I've already got the pain. But if I wheel, I can conserve more energy to have any sense of quality of life. Sure, using a chair may amplify pain levels in different ways, but lowering my fatigue level and avoiding my undiagnosed struggle with standing still for periods of time, my quality of life is simply better. It's important to line up the pros and cons of your specific situation and using a wheelchair. Yes it can cause more/different health issues, but what it solves can be enough. Quality of life is the goal.

[@LouiseFranksArt]

I don't think anybody is suggesting you never move about if you can though. I don't think anyone has said that. Maybe I'm lucky as I tend to only need small amounts of movement to stop any pain from immobility. However too much movement causes me pain for days - and that is unfortunately very little movement. I recently did a day at Thorpe Park on a mobility scooter (I don't do the roller coasters, just things like Derren Brown Ghost Train etc) and even just with ride transfers and trips to bathroom etc, I'm still paying the price a week later.

[@DANNYTHEFROG123]

stationary bikes are great excerise for people who have chronic pain and its safe for them to use it. Also swimming. That is what they have me doing and it works great to get you moving. I do it with a physical therapist

[@cristers2332]

I have the same scenario as you, Stephanina. I'm an amputee unable to wear a prosthetic and use a wheelchair full time. I even had osseointegration to try walking on a rod. 3 yrs in a wheelchair, and obviously will spend the rest of my earthly life in one. Your comments ring very true. We just try to make the best out of what we have.

[@pjaypender1009]

@@DANNYTHEFROG123 It is safe for *some* people with chronic pain. You are not everyone with chronic pain.

[@chronicallycal]

I’ve had my wheelchair for about a year. Recently I’ve been worried I’m using it more than I need to (ty internalized ableism). Then two days ago I had to stand for 10 minutes for a medical test and I still feel terrible. Trust your understanding of your own body. It’s not a simple choice, but if you’re thinking about it a lot, it’s probably worth looking into further. It took almost a year to get my wheelchair after self-referring to OT, so in my experience, it’s not a snap decision once you reach out to someone. By the time I actually got my wheelchair, it was one of the happiest moments of my life because it gave me so much freedom.

[@kaitlyn__L]

I feel this. Every so often I have my doubts, then I’ll stubbornly try to do stuff in the kitchen standing and it just destroys me for days.

[@rey-yac]

I'm an ambulatory wheelchair user. I typically use a cane or rollator but if I'm going to do something that requires a lot of walking like a museum or a fair or convention. This way I can enjoy the event without becoming in pain or fatiguing faster.

[@kaylajaimistockwell3744]

Yes! This is something I’m struggling with at the moment. I want to keep walking and be active (I’m using a walking stick currently) but walking for long periods is stressful and painful and I’m CONSTANTLY having to have breaks while walking with friends and they’re treating me differently for it

[@nickyannajones]

I recently bought a 2 in 1 rollator for the same reason. I like to do things that require walking but walking quickly becomes painful. So, I bought one from Amazon. I have all kinds of feelings about it but sigh I don't wish to stop doing things

[@rey-yac]

@@kaylajaimistockwell3744 When I'm in the situation that I need a wheelchair it's easier on my friends and family too.

[@rivviegobrr714]

i'm considering doing this, I use a cane but on bad pain days it's just not enough :/

[@OldDeuteronomy555]

Yes this is me! I usually use a cane but I'm gonna visit the naturalhistory museum soon and I'm gonna rent a wheelchair

[@hellostranger6267]

My jaw dropped when you mentioned furniture walking. I thought that was completely normal?? I always cling to walls and grab onto furniture after being exhausted from going to school or seeing friends. On my bad days I can barely walk at all because my knees keep buckling. I fall alot because of this but I'm kinda used to it at this point. I'm not going to be able to get a wheelchair anytime soon, as I'm "too young to be this ill" and "don't need to see a doctor" because I'm "probably overreacting". I am going to be looking around for different mobility aids to hopefully help me not fall in the middle of a road. This video has been super helpful and educational, thank you

[@TheMazinoz]

Maybe look into hypermobile knee braces by Donjoy or Mueller. Donjoy are sturdier and probably last longer. A foldable cane?? Walking poles?? Manual adult or elec scooter eg: Razor are affordable if balance isn't an issue. Bike riding and climbing stairs are probably not a good idea with our knees.

[@gweneththompson2209]

I have a neurological condition that is caused by a brain/body miscommunication and is often triggered by pain and exhaustion. Some people with it become partially paralyzed for months, some just have trouble walking, or walking distances. Often we are told "don't get a wheelchair, you will become dependent on it". Or "if you use a wheelchair you're lose more of your independence." Yeah, that's such BS. Thank you for this video. If you need it to function and enjoy life, use it when you need it. Without mine I would be house bound. With it, I can go shopping, to community events, to fairs, etc.

[@zmeganz]

I think I may have the same condition as you. When I was diagnosed the first thing the neurologist told me was that my goal is to get out of a wheelchair. I wanted to tell her that’s not my goal. My goal is to have the best quality of life possible. I’m moving to a new country soon and I’m really scared for how my new doctor will be about me using a wheelchair

[@TheMazinoz]

That's a bit like telling people who need them that using spectacles will weaken their eyesight!

[@gweneththompson2209]

@@zmeganz I hate how Neuro's think they can tell us what our goals should be. It's my goal, I get to pick. My neuro dropped me because there was 'nothing else they could do'. My complete care is now through my GP, who doesn't really understand my disorder and I've been trying to educate her. She ordered my wheelchair for safety reasons (I had a seizure in a store and pulled a shelf of cans down on myself in the process).

[@gweneththompson2209]

@@TheMazinoz exactly. It's ridiculous. "If you use a wheelchair you'll stop wanting to try to walk." Um. no. Using a wheelchair comes with a lot of barriers. I'd rather be walking, and I do at home, where it's safer. But falling while crossing an intersection isn't something that will improve my independence.

[@TheMazinoz]

@@gweneththompson2209 I use a cane in a similar way. But on really bad days I use a Razor scooter or manual two wheels one to go two houses away to shop for groceries. Trying to organise knee replacement unless hip is actually worse!

[@redsorgum]

Always remember, you are the only person who can live in your body, no one else can. Don’t concern yourself with what other people think, you don’t always have to give an explanation for why you need to use mobility aids to get around. 😘✌️

[@EllaHayaTV]

❤😢

[@PrettyEyesz]

So true, thank you for this comment.

[@PrettyEyesz]

I absolutely totally agree, it is our body and we know our bodies better than anyone because we live in them each day. I don't care that a doctor has a college degree, it's my body and I know when something isn't right with it.

[@StephanieCerviDesign]

My wheels enabled me to spend a week enjoying myself at Disney World with one of my best friends. I thought I'd never get to do that again. We averaged 12 miles a day, that trip. I would have been in indescribable pain if I'd had to walk, even with a cane. Instead, I was smiling and enjoying myself the entire time. Long story short: if you think you need one, try one. See if it helps. If it helps, it helps. It's really that simple. (Caveat that the inexpensive Drive wheelchairs and other "hospital models" are incredibly heavy, difficult to self-propel, and not set up for good ergonomics. A lightweight properly-fit chair makes a world of difference.)

[@pjaypender1009]

LOL So you are saying that people should acquire a very expensive, bespoke wheelchair to just "try it out and see if it helps?" You are heavily privileged then. Most disabled people can't afford that. We are lucky if we can afford one if we are sure we need it.

[@StephanieCerviDesign]

@@pjaypender1009 You're right, I wasn't as clear as I could have been. I meant to try out with the inexpensive model, since those can be borrowed or rented much more easily. Not everyone can afford an ultralight, you're right. I got mine secondhand from someone with the same seat pan size, and even that was a significant chunk out of my budget. It really did make a difference, though, so I think it's worth it if it's within budget.

[@lisahetherington7736]

I sat around depressed and worried to get up and walk with my walker because I was scared of falling. And the winter with snow and ice was totally out of the question. My OT told me just recently that she wishes I'd switched to a wheelchair 6 to 9 months earlier than I did. It's been 2 years now and I'm still getting used to the Independence that the wheelchair gives me. But I love it!

[@KathrinHausermann]

it was a very easy decision for me. And it was the best. My wheelchair is also serving me as a painkiller. It helped me to be faster, have no falls anymore and far less balance issues. and it helped me to finally know to which group i belonged.

[@AmethystWoman]

I wonder why I can't leave my own comment except to reply to a previous comment. So I guess I'll say it here: Thank you for saying the word painkiller. I had a scooter and I can't get it in and out of the car. Thank God I bought it used and can sell it for hopefully what I paid for it because I never got to use it even once. (disabled my whole life so wasting $750 on a credit card was a hard decision to make!) And now I found I used Air Hawk foldable lightweight wheelchair. A dream wheelchair right? ( bilateral rotator cuff surgeries with retears prevent me from using a self propelled wheelchair.) The company I bought it from put it in my car and now I can't get it in and out of my car myself. I've had lots of spinal surgery and i've spent most of my life on crutches. But since covid, my chronic pain condition which is CRPS has spread. I can only go into stores that have electric carts and the stress of wondering if there's one available causes me pain to walk a store only to find out that there is none or worse that the previously disabled person who used it didn't plug it back in! And sometimes didn't even shut it off in the parking lot! I'm using Forearm crutches all the time now which I didn't need to do before covid. I had been in the long remission though I spent 30 years between the ages of 20 and 50 on crutches. But I feel embarrassed about needing to use a wheelchair especially because people in my life who've never seen me on crutches (I've set myself up by not leaving the house when I'm in pain so people don't know that I'm ever in pain) never mind all of a sudden showing up with an electric wheelchair. I heard somebody say once using a wheelchair saves them spoons so that I can make dinner when getting home. YES! Right now I go to doctor's appointments and back and only places that provide electric scooters. If I try and do any shopping and then have to stand in line to pay I end up having wasted the entire time because I just have to leave the card and go to my car. So now if there's no electric cart available, or charged, I just walk back to my car. It's especially a problem since my insurance company insists I use Walmart for medication if I want the lowest price. And the pharmacy is a long way from the front door. But I can't get over my embarrassment of needing to use the chair. And now I can't even get it in and out of my car because they only ever show able-bodied people putting wheelchairs in and out of cars. With a lightweight wheelchair, does she sometimes need to share should at least be able to do it by themselves. And I need to take it out of my car even just to charge it. Small portable ramps and I'm finding on Amazon are upwards of $150 and probably just as heavy as the chair which is only 41 lb? My head and my life get all mixed up I'm so glad for this video thank you. Wish I could have left my own comment instead of hiding it under yours but for some reason I can't.

[@RhamanaChan]

I have MS and it was when I started to furniture walk that I felt I needed to use a wheelchair. It gave me so much freedom it was crazy. Now I'm in one fulltime as my legs have stopped working at all, and I can't even stand. Glad I got in to it sooner rather than later, really built m,y arms up a bit haha.

[@itzhaktzvishohat7490]

My wife's listening in the background agreeing with every word you said. She's so happy that I finally got a chair and am "jolling around" with her instead of being at home.

[@strawberrywheels]

my roommate has lived with me since i was first out of the house and trying to live independently without mobility aids. i thought that because i had managed for so many years by just staying on my feet and hoping i would be able to get basic needs done before dropping, that i didnt need a wheelchair. then when i got one i realized just how much i was missing out on. my illnesses are largely "invisible", but my roommate has told me how much of a difference they observe in me when im aided vs unaided when i start to doubt myself. im now even considering a custom chair as i start to accept the fact that i will probably need a wheelchair on and off for the rest of my life. i definitely wouldnt have reached that without my roommate and people like you. thanks so much!!

[@kaitlyn__L]

That’s awesome! Noticing the difference it made to how tiring household chores became was my first clue I Really Needed It too. Indeed now I do have a custom measured one, rather than the second hand one I started with.

[@falsesyllogism2116]

I've had to use a chair since my early teens, but I've noticed a lot of people coming to the point of needing a wheelchair refrain because they feel like imposters for using one. They can "just about manage" (albeit in pain or distress) and so feel they're not immobile enough to "deserve" a chair. If you are at this point, GET THE DAMN CHAIR! 😄 It's a tool to make life better, not a badge you earn for being disabled enough. It will improve your life so much!

[@kaitlyn__L]

Exactly!! Honestly I should’ve been using a chair back then, but I didn’t until my body made it clear I couldn’t struggle on any longer. Now the other consequences are worse for it. I wish I’d listened to myself more than the people who told me it would be giving up on moving around (which is clearly nonsense now, but I was so scared of that).

[@ylfamoon]

oh geez i'm one of these people. AND I HAVE A FUCKIN WHEECHAIR. i don't even allow myself to use it as often as i probably should because of this, and ALSO because i feel ashamed to ask people to accommodate me having it. specifically people who have known me since before i needed it, because most of them just don't grasp that the whole reason i got one was because i had become housebound due to being in excruciating pain and near-fainting due to dysautonomia. having my wheelchair grants me the independence that i lost over time as my chronic illnesses worsened. there are some limitations due to inaccessibility in public spaces, but even that is so much better than never being able to manage leaving the house for more than 10-20mins every few days if im lucky

[@user-crpsdiaries]

Thank you for this.

[@bxstar5276]

Loving the wheelchair positivity. I’m having a lot of seizures, paralysis and mutism and barely leave the house. I have to go out with a chair. If I’m only walking I could be fine but any shop, interaction, stress, noise I’ll Have a seizure and be paralysed for about 20 mins. I used to lie on the pavement each time… 😵‍💫 Now I’m this strange person who gets in and out of the wheelchair! I mean I don’t care what people think but it could look like I’m taking advantage of disability privilege (people do treat you different 😳 and sometimes in a nice way).

[@TheMazinoz]

Ignore the ignorant idiots out there. The ones who give people with a disability a hard time I've found usually are ignorant and stupid and / or have some sort of psychological issue where they have to somehow feel superior to someone by putting people down.

[@anneharrison1849]

I've recently transitioned to using a wheelchair full time when previously I used it outside the house (and occasionally on really bad days). I've felt like a bit of a fraud at times, so I really needed to hear this, falls and furniture walking had become an issue for me.

[@jennifers5560]

Love your positive attitude!

[@Wheelsnoheels]

Thank you so much 😊

[@erinnicolefranco6807]

Ambulating wheelchair user here. I mostly use a rollator. Due to a recent flare up, I’ve been forced to use the chair more. Since using it more, I have more energy, maintain better posture, and have surpassed my daily exercise as well as steps. My daily standing has decreased, but it’s gone from 16 hours to 13. So still higher than average. I still use the rollator a lot but I focus on using it when I can due so with better quality

[@sarahou-young]

Thanks!

[@Wheelsnoheels]

Ahh thank you so much for your support 💕

[@davidsouthworth3304]

After chronic pain and major knee problems I decided to use a wheelchair and it’s the best thing I did

[@abilitycrafting864]

Well said. I was that person without a wheelchair and finally getting one was like a new life. I even recently learned to take my phone to call stores I want to visit and tell them to open the door for me. Why can't I live in a place where the world was made for people with disabilities? You'd think the USA would be full of them, but it isn't.

[@valerieannrumpf4151]

I have cerebral palsy and I use a power wheelchair. Using a wheelchair has actually made me more independent, it sure beats being stuck at home.

[@ilovebrean]

I’ve been using a chair on and off since 2017 and still family dont understand I love being able to do more than 1 thing a day and not worrying about feeling ill and not being able to get home or having to walk to the next bus stop or something I just wish I was better at self propelling as I’m not very good at it but I love my tri ride and being able to go on long walks again but there is times I do still walk but I have to pace myself and rest before and after

[@karencollins1356]

I have a neuropathy condition ,I can walk using a walking frame in house,but if going somewhere that requires a lot of walking I need my chair,lots of family don’t understand why I don’t walk with my frame outside,my reply is “ I would but I will get worn out before end of road !”.been a year with this condition and it took a huge jump to go outside and being seen in it,thankfully I have a very supportive husband and 2 adult children to help.

[@frentbow]

Good for you, I hope people come round to your way of using your chair because you need to.

[@salan3]

A great video thanks. Even though I do not use a wheelchair (yet), I use a mobility scooter. The things you said about using a wheelchair are relevant for a scooter. I am one of those people that whilst I have all my limbs and they work, I do not produce the 'drive' for my body. So all movement is a great effort and very exhausting. So a manual wheel chair as you have would not help. It would have to be powered. Even now my life revolves around batteries and how much power they have left in them. Yes I have run out of power (not often) and my wife/carer had to push me and the scooter back to the car(You can't just get off it and walk back to the car!). Does it affect me going out? Yes especially when I am not so good. It is all too easy to just take the 'easier option' and not bother. As I said a lot of what you said is applicable for scooter users also.x

[@LouiseFranksArt]

As you know, I got a mobility scooter last year, well I love it! It's opened SO many doors and it's been fabulous for my mental health. However, we've now booked a cruise for Christmas and we couldn't get an accessible cabin - their rules are scooters must have an accessible cabin. So now I've had to buy a manual wheelchair. I don't feel positive about that yet, but once I get on my cruise and I see how the chair has (like my scooter) opened a door to something that wouldn't have been possible otherwise, I know I'll love it. My GP can't believe what a difference the scooter has made for my mental health. We've been to Brighton Sea Life Centre, Thorpe Park and Legoland all within the last month...places I could have only dreamed about previously. It was actually a suggestion from my sister that I look at getting a manual wheelchair so that I don't need to miss out.

[@SnowySpiritRuby]

Ambulatory wheelie here. My lower spine has been messed up since early grade school, but it didn't really give me any mobility issues (at least nothing noticeable) until I was 24, when one day I randomly started not being able to stand still for more than about 20 seconds at a time, or walk further than about half a block, b/c my left knee would suddenly give out (no pain, but rather a total loss of power from one of my low vertebrae pressing very hard on my spinal cord, and I'm sure POTS, mold poisoning, probable hEDS, and having sustained 5 or 6 concussions in the preceding 2 1/2 years also didn't help), but only on smooth surfaces, and wouldn't stop until I'd been off my feet for a while; uneven surfaces (dirt, grass, gravel, etc.) are perfectly fine, and I can walk the 2 miles from the barn to the very back of the horse pasture and back (1 mile each way) with no issue (apparently having trouble on smooth surfaces but being perfectly fine on uneven ones is a thing, even though it seems like it should be the other way around). So that was the primary reason I got my chair - used a loaner for just over 2 years until I got my custom w/SmartDrive a little over 2 years ago (without the SmartDrive, I wouldn't be able to really get out much without having to drive because my joints can't handle wheeling except on a smooth, perfectly level surface due to what I'm 99.999% sure is hEDS (the only thing that could potentially rule it out is genetic testing, b/c I meet the hEDS diagnostic criteria), plus a messed up shoulder from a soccer injury when I was 14 - I timed it once, and it takes me 9 times as long to wheel myself as it does to use my SmartDrive for the same distance). I also use it for saving energy, e.g. 3 years ago, in the days leading up to a wilderness medical recert, I used my chair (instead of walking) as much as I could to conserve my energy so that I would be less drained for the recert itself, since it was at a camp where I knew, because I'd done my previous recert there, that I wouldn't be able to use my chair there at all. Good thing I saved my energy, because I ended up having to walk down a big steep hill and up another one 6 times a day for all 3 days of the course (from the cabin I was staying in over to breakfast, then to a building next to the cabin for class, to lunch, to class, to dinner, and back to the cabin for the night - the previous time I was there, class was held in a section of the dining hall and the cabin I stayed in was pretty much right next to the dining hall, so that time it was no big deal), and it rained a lot of the time I was there, so the ground was wet, so I also had to spend the energy to make sure I didn't slip on the way down each time (not easy when a good portion of it is wooden boardwalk and steep wooden steps (no railing of any kind for a lot of them) and there's moss on them). And there are times where my legs outright refuse to hold me - doesn't happen very often, but occasionally altitude will affect me so badly (I live in the Rockies, and my body doesn't really care whether I return back down to the original elevation or not, it only cares about whatever the highest elevation I went to was) that my legs downright refuse to hold my weight, making me have to lock my knees when walking/standing in order for them to not give out, and sometimes even that isn't enough. As for my mindset for using a chair when I can still "walk perfectly fine" (I've personally never used crutches (other than after an acute injury), a cane, or a walker, because I've never needed them and they actually wouldn't help me anyway, though I do use the shopping cart as a walker when grocery shopping because I can lean on it while still maintaining a balanced upright posture), some of the videos in Chronically Jaquie's custom wheelchair playlist were exceedingly helpful in hammering home that a chair is just a tool to improve quality of life, not a sign of giving up in any way, because she said there would be times where she would need to use it and other times where she would be able to use her walker or service dog instead. As for what other people might think of me using my chair or handicapped parking tag when they've seen that I can still walk, the way I see it is that my doctor and I (and some of my family and friends) know my medical history and the reasons I have the chair and tag, but other people don't, so what they think about me using them doesn't matter, so I don't bother concerning myself with it - honestly, one of my favorite things to do when I'm at 2 particular grocery stores is, when I need to get something off the top shelf in the refrigerated or frozen section, to get out of my chair and climb up (but not on my chair) so I can reach whatever it is I need, then pop back down and get back in my chair: I figure I'm breaking stereotypes for anyone who sees me do it (by the time I got my custom, I'd already dealt with someone being very surprised that I was in a chair but could still stand up - I gave him the little "not just for paralysis" spiel - so I'm not embarrassed to let anyone else see). EDIT: 2 1/2 weeks after posting the above comment, I was solidly diagnosed with hEDS; as of Jan. '25, I'm still waiting on testing for something else that might also be contributing.

[@kaitlyn__L]

FWIW genetic testing can’t confirm or deny hEDS, because no genetic markers have been discovered yet :) if you’re a negative for vEDS, which is what the testing is really for, just going by symptoms and family history is enough for an hEDS diagnosis!

[@SnowySpiritRuby]

@@kaitlyn__L Yes, I know, but with my particular medical history, there's a (very slim) chance that there is a different, or an additional, cause for what I'm dealing with, so while I meet the first 2 criteria for hEDS (echo was normal), there's a possibility that something else might come up when doing the testing to determine whether I meet the 3rd one that may or may not negate it.

[@karinaschmidt290]

I'm going through a very similar situation right now to what you described;-;

[@SnowySpiritRuby]

@@karinaschmidt290 It's definitely not easy. Wishing you all the best in the process. The biggest thing for me that helped get the ball rolling sooner was that I tested out whether a chair would even help with the legs giving out thing, and it was immediately obvious that it did, so I used the loaner for as long as I could bear it (I actually had 3 different chairs before I got my custom one - first was too big all around, second one was too big in some places too small in others, and the 3rd was one I inherited from my grandma that had almost the exact dimensions I needed - all 3 were a giant pain in the butt to wheel myself in at the airport, though (I had help, but only for getting between gates and to where I got picked up)) and until I could get insurance to cover a custom with SmartDrive - having already used a chair for over a year meant I didn't have to wait an additional year to get my SmartDrive after getting my custom.

[@nixi-bixi]

I've used a walking stick &/ crutches for over 18 years. 8 years ago i *knew* that i should get a wheelchair to make my life easier, especially for days out & to preserve energy because i already was experiencing the 1 day out then 5 days housebound/ severe pain & damage. It was 2019 when I *FINALLY* decided that it was time to get a wheelchair. However I quickly found that i didn't have the upper body strength to push myself, plus coupled with my EDS hypermobility, my shoulders & wrists especially couldn't handle a manual wheelchair. Obvs Covid then hit and due to other health issues i had to stay home. I did buy myself a mobility scooter during the pandemic ( gotta love the internet!) But it didn't get any use until recently. I'm also looking to get an electric folding wheelchair for the exact same reasons that i initially bought the manual wheelchair for, days out and to conserve energy. Unfortunately in the midlands the buses & trams require mobility scooter users to have gone on a training day to learn how to get on off etc. My issue is that i cannot renew my expired disability travel pass because of the PIP delays. I sent off my renewal papers in October 2021, my bus pass expired in December 2021. You need a valid disabled bus pass to book the training day. I'm getting paid PIP but due to the ongoing delays I've only had random texts saying that they have my paperwork, they are progressing the review as soon as they can and that i may still need an assessment (every bloody time, why can't they understand what "degenerative" means?). So on the *very* rare times that i leave my place (i live alone) i still have to put up with the 5+ day recovery period (i still have issues with internal ableism, telling me i should just walk) or get an uber assist to be able to take my mobility scooter. I love your channel, it's helped me a lot & your videos help me especially mentally, when having a bad day. Even pre pandemic many "friends" gradually (or not so) disappeared. Thankfully I do have a couple left who are the best. Unsurprisingly they're people who have experienced health issues themselves or to family members close to them.

[@TheMazinoz]

I have HEDS too, live alone and trying to navigate knee replacement surgery, when I have noone nearby to babysit me post op. I can't have surgery unless I have someone or will sign a waiver for hospital. I get it. I hate shopping malls and will be trying to organise an elec chair they provide I think if I go to large one again. A cane doesn't cut it for. these places. I use an elec two wheels scooter more and more just to use local nearby (two houses away) Aldi supermarket. COVID means they often don't have basic items! Still. I do a lot of shopping online, including the scooter which I assembled myself.

[@frentbow]

I hope you get your application sorted soon. It must be very frustrating having to wait.

[@noboxlabs]

I have degenerative spine disease and have had multiple surgeries. I totally relate to your point about walking around laying me up the next day even when I used a rollator. I finally got a folding electric wheelchair that I can load into the SUV by myself and it has made a world of difference. I can go to multiple stores on the same day and not be laid up the next day.

[@peanutbuttersandwich3412]

Can you tell me the model of electric chair you bought? I have severe Rheumatic disorder that has progressed to the point that I can't wheel myself around and I am considering an electric wheelchair. One that is light and foldable sou ds awesome!

[@noboxlabs]

@@peanutbuttersandwich3412 I got an Electra 7 HD from Quick N' Mobile.

[@peanutbuttersandwich3412]

@@noboxlabs Thank you and many blessings! I will definitely check out that chair. :)

[@davidlayton2340]

This is a absolutely brilliant video and would be excellent for anyone who is in need of a wheelchair but hesitant. Wheelchairs are fantastic and they definitely liberating ❤😊

[@CinkSVideo]

Best decision I made was to accept that there were just things I could not do without a wheelchair. Getting outside the house and moving was the best therapy.

[@YouDontLookDisabled]

I use an electric wheelchair when I can't use my manual, and I can walk. Not always, not always far and not always well...But the looks of confusion of many people's faces when they see me on my feet...#Priceless... ❤❤❤

[@AmethystWoman]

I wish I had your attitude. Mine is one of embarrasment. 😟

[@SnowySpiritRuby]

@@AmethystWoman Chronically Jaquie's view on it was extremely helpful for me in avoiding the potential embarrassment: the way I look at it, a wheelchair is merely a tool, just like a walker, cane, crutches, oxygen tank, etc., that allows me to live my best life possible - for my personal situation, that means that sometimes I need it, sometimes I don't, pure and simple, and I don't owe anyone (except my medical team) an explanation for why or when I need it because it's none of their business, so what they think doesn't matter (I have explained it to select relatives and friends, and a few others, but that was entirely my own decision). I look at it as an opportunity for my normal everyday activities to be a potential culture shock to others by breaking stereotypes simply by doing things in the way that works for me.

[@joyrodriguezcolbert9159]

Great video! I have MS and can't stand longer than 30 Seconds without holding on. I have a wheel chair and an electric scooter. I prefer using the electric scooter versus the wheelchair. I feel so confined in the wheelchair so my therapist is going to look at it and see if we can make it better,but I do prefer my electric scooter.

[@lynnann96]

Parkinson’s has made my legs into noodles 😢. We live in a very small house so can furniture walk in the house. I recently ordered a Grit Freedom Chair for outdoor activities. I’m still on the fence about a wheelchair for other times. Thanks for this.

[@kat1722]

this video came out at just the right time. ive just bought my first wheelchair (delivering in november) but starting to get a lot of self doubt, people keep saying thing (they mean well) about how their glad to see me walking, or how certain things will help me not need mobility aids (i use a stick the majority of the time) but they dont see the after affects, not being able to do anything for days after, even when i use good pacing. ive gotten to the point that im relying on my stick too much and am popping my shoulder out of place which then has knock on effects for the rest of me my chair is going to allow me to do so much more, ill be able to go for days out with neices and nephews and not feel like im holding everyone else back, ill be able to still go out on bad mobility/pain days rather than cancel plans all the time.

[@frentbow]

Good luck using your new chair

[@kaitlyn__L]

Oh my gosh good luck! I remember when I first got mine and most of my shoulder/hip subluxations stopped after a few weeks. My back pain reduced to a point I hadn’t felt for 10 years. I’m super hoping you’ll have a good time with yours!!

[@BrendaCHughes]

I use a wheelchair quite a lot of the time. I am an amputee but do I have a prosthetic, but due to still having a condition called complex regional pain syndrome in my stump it stops me using it has often as I wanted too. Now my consultant says I need to be referred to a spinal surgeon because of problems with my lower back, spine and horrendous nerve pain in my amputated leg. I was lucky I have had a customised wheelchair made through NHS funding which I get next week Happy days. All iam waiting for now is my ramp for outside the house which I have waited for months for. At least that will give me a chance to get out instead of relying on other people to get me out. Next is to learn to drive my adapted car. So if you need a wheelchair don't hesitate use one

[@user-crpsdiaries]

I'm in process of getting an electric wheelchair because of crps. After a surgery I can no longer walk on my left foot without excruciating pain. I'm sorry you developed it too. It's brutal

[@latisuto]

Merci 💚 C'est grace à des vidéos comme les tiennes que j'ai accepté d'utiliser un fauteuil roulant il y a un an. Depuis j'ai gagné en liberté et en autonomie. Et là je fais les démarches pour avoir mon premier fauteuil sur mesure 🤗

[@OldDeuteronomy555]

Je suis trôp heureuse pour toi ! Tu a reussi a avoir ton fauteil ?

[@jarinordman7128]

What a great video again Gem! Wish i saw this 15 years ago... I've got Ehlers-Danlos syndrome, and walking came harder and more painful, but pressure of my own family made me fight against wheelchair... After I moved to UK, i just started to use a chair full time, and gave my life back! I love your positive style to make videos! Keep pushing girl! :)

[@kaitlyn__L]

It’s such a shame how much pressure there is. Especially the people who view it as giving up on ever walking again, or even worse, on _exercising_ again. Like, that’s an easy way to signal they’ve never pushed a manual chair! Sadly I waited too long and lost so much more of my mobility, but that’s why I tell people to get theirs early now!

[@leighmagrum4434]

Ever since I found your channel, you have help me in my wheelchair journey and I have a electric wheelchair and you have give me a lot of confidence. You rock. Your channel have been a great support for me.

[@katedellorbo579]

Hey Gem I like this channel. But this one really spoke to me. I have arthritis and walking has become a struggle and extremely painful. My first wheelchair was a real struggle to decide to get, it took me months. I have just bought a super lightweight wheelchair which I hope will get me even more active. My family helped me see that, having a degenerative spinal condition, preserving my mobility was a worthwhile endeavour! But it still isn’t easy at times as - as you say - it can feel like giving up. But it isn’t. I am learning to feel less guilty about it. Channels like yours help!! Thanks!!

[@_Claire_Louise_]

I've been using a standard mobility shop wheelchair for almost 2 years now when I'm out of the house for many of the reasons you mentioned, I've now ordered my first active chair after an ot came to the house (the voucher barely covers the cushion and push rims I need but it's better than nothing) and I'm so excited to have something much lighter and more maneuverable and see the difference that makes

[@sheilarough236]

My mom fell & dislocated her shoulder. Followed that 2 1/2 months later, she had a mild stroke. She’s also nearly blind. After rehabilitation from the stroke , she was back to using her roller walker, then she began falling, several times a week, sometimes more than once a day. A year ago, I insisted she use a wheelchair. In the past year, since she started using the wheelchair full time, she’s only fallen 3 times. Each time because she’s forgotten to lock the wheels. So much less risk that she’ll be injured from a fall now. She wasn’t tripping over anything when she was falling all the time, her legs would give out, and her balance is very poor, especially since the stroke

[@medinasod2013]

Thank you for your wonderful videos I've learned a lot . I've used a power chair for 10 years now I have MS I use this scooter when I go out with my husband because it's mobile chair weighs 300 lb

[@annettesuterswiss]

Thanks for this video! I am up and down with my hEDS. Yesterday I used crutches, and it qasnt the greatest thing, as my arms are instable. It took me courage to just use crutches. People in my village stared or didnt look at me at all..so I googled when it is time to start using a wheelchair. So I even booked an apointment with a mobility aid specialist in town, that was my first step.

[@cherylannaw]

This is a great video!!!!!!!!! I have Cerebellar Ataxia and have used a wheelchair for many years.

[@michelleswanson6347]

Love this video! Using a wheelchair or powerchair can be so confusing for someone with chronic illness. I wish it was something that was better understood - including being understood by medical professionals. I had to hear about how a powerchair could help me with my chronic illness through the chronic illness community since none of the doctors ever suggested it to help me. Once I did request it, they agreed it would be helpful, but I lost so much time until then. I wish the people I was paying to help me with my chronic illness had done more to improve my quality of life instead of leaving me to figure it out.

[@TheMazinoz]

I get it. I have HEDS/HSD depending on who you ask. I've had to figure out pretty much everything on my own as OTs PTs doctors and nurses know nothing about it!!

[@anneliseingram4276]

I have a metabolic degenerative disease which is extremely rare which has left me now needing a wheelchair every time I leave the house I see it as a positive thing that I can use a wheelchair to improve my quality of life but what did surprise me is other people opinion because I can still walk a tiny amount and move my legs they are like well can’t you just make yourself keep walking I find they views very deflating. Thanks for your videos they are great and really have help me a lot.

[@tinachambers4887]

Dear Annelise If I could give a little advice I've tried to change my perspective an it's help me be a more positive person

[@anneliseingram4276]

@@tinachambers4887 I believe the fault is mine for the misunderstanding I was not clear I’m very positive about using a wheelchair I think it improves my life immensely. I should have made it clear . But thank you for the comment.

[@rach_laze]

could I survive and manage without a wheelchair? yes would I have the same quality of life and participate actively in society? no, therefore I use a wheelchair. I'm fortunate that I can still mobilise short distances inside the house but I wouldn't be able to do a food shop for example. With my chair I was able to go to Disney for 3 weeks doing 8+ miles a day

[@daviddewilde3310]

Getting my own wheelchair reopened my world. I started getting out more, I picked up some hobbies… just because i felt i could finally do things myself once again

[@MusingsFromTheDen]

I was born with my disability, and honestly I wanted to use a wheelchair long before I became an adult and decided for myself that I was done with the whole walking lark. My childhood was full of surgeries and physio because at the time the goal was to make us as 'normal' as possible. Even a few years ago, I tried to force myself to learn to walk again because I thought walking was the ideal, but when my physio helped me dig it to why I was putting myself through it, I realised at the root was internalised ableism and the desire to 'fit in' with non-disabled people. She helped me see that using a wheelchair gives me a better quality of life than wasting time getting frustrated at a lack of progress waking. Now I'm so comfy in my disabled identity that if non-disabled people want to come along for the ride (figuratively ands literally!) that's up to them. 😊

[@tinachambers4887]

Great video 💎 appreciate your outreach to the community have a day love from TEXAS

[@purpleautisticgirl]

I’ve used a wheelchair the majority of the time for about 5 years now. I have EDS and before that I used a mixture of crutches/no aids and just used my chair for long days out. I figured I’d be able to keep going like that… until I was no longer able to tolerate my main pain meds (that was a fun year!). I was pretty darn anxious about other people’s reactions at first, but nowadays I am SO much more confident. Before I had to worry much more - how far are things, are there seats, how comfy are the seats, will I be in agony for days afterwards, will my legs behave when my shoulders are too dodgy for my crutches… Now I can go places knowing that I won’t be in agony or exhausted, and I have my own seat! 😂 I’ve even got into wheelchair sports (especially tennis) - I used to hate sport! It did take my family a while to get their heads around (and I do still get ‘do you really need the chair for this’ occasionally) - but they’re getting there. Getting an NHS chair helped a bit since it’s no longer ‘just me’ explaining why I need it! Things that have massively helped me become more confident and comfortable as a wheelie… a chair that actually fits, one I can lift myself in/out the car, fun colours/accessories (I have a purple chair with rainbow wheels!) and power assist (funded by a charity). Also other wheelie friends!

[@kaitlyn__L]

Having other wheelie friends is so important. I’m jealous of colourful wheels though! The body of my chair is nicely coloured, but the wheels just mostly black.

[@purpleautisticgirl]

If you have wheels with spokes, you can make them any colour you’d like with spoke covers 😀 I got mine from Amazon and eBay - they’re just plastic straws that clip on over the spokes.

[@SnowySpiritRuby]

I have spoke skins, too, and they're awesome! And colored grippy pushrim covers that match my frame color, since my grip is bad (even with grippy gloves) and the pushrims are too small in diameter for me.

[@RuchamaGrace]

I am 39 and I have EDS. I use a wheelchair for the past 5,5 years for outside and some days in my home too. But looking back? I could have used the chair already 20 years earlier. Walking was always painful for my legs and my back. A wheelchair gives freedom. I am really happy with my wheelchair with shockabsobend wheels and batec bike and smartdrive. Look at it as a bike. It will take you to wherever you need or want to go.

[@kaitlyn__L]

So relatable. I think I should’ve gotten a chair 10 years earlier than I did. It’s amazing how this internalised stuff (and often bad medical advice) keeps folks like us trapped in a world of pain :( I see you mentioned suspension - do you have Frog Legs? Or perhaps Loopwheels? I’ve got the former, and they really were the key for pushing outdoors with my flimsy wrist joints.

[@TheMazinoz]

@@kaitlyn__L Yeah, your body is screaming at you that there are problems and GPs just pat you on the head and don't believe you or worse accuse you of faking it for disability or drugs. Great for your self esteem, pain, frustration and confusion and internalised ableism.

[@HearingLossPathfinder]

My therapist made the decision for me. It was extremely liberating. There are issues of transportation, but hey...I just bark a bit louder to get that "fixed".

[@melaniebutson7933]

I need a wheelchair some days. I have one I got on Freecycle but it's not the right fit for me. I've been told to ask to be referred to wheelchair services but the drs haven't been all that helpful in the past. I asked for them to sign the paperwork for the disabled bus pass and he practically laughed in my face and refused. The first time I asked about a blue badge, the woman at the council, looked me up and down, while I'm standing there with a walking stick and numb feet from walking, and told me I could have the form but I probably wouldn't get it. The so called people who are meant to help me, have been rude and dismissive so I'm reluctant to ask for a referral to wheelchair services despite it taking me 5 minutes to walk the length of the drs waiting room and them seeing I'm struggling in pain. I'm debating setting up a gofundme for a wheelchair that's measured and the e-wheels so I can self propel without needing my son and not getting worn out so easily.

[@boofyhalfpint8559]

My first thought would be to find a doctor that is empathetic to your needs, second one would be to try the council again and if you have the same DISCRIMINATION, then take the idiots name down and put in a formal complaint to your local member of parliament, or go on the local radio station and tell the voters what type of people they are paying for at their council office. Best of luck.

[@melaniebutson7933]

@@boofyhalfpint8559 I have a blue badge now, but will have to reapply in a couple of years. Just need to find that elusive doctor

[@boofyhalfpint8559]

@@melaniebutson7933 Great stuff. The empathetic doctors are a rare breed but worth GOLD once found. I am not talking about quacks that hand out medical certificates like candy but conscientious doctors that listen and will research that extra journal to find out what is needed etc. due to my empathetic doctor, I have just been approved for a fitted Enable (NSW state system similar to NDIS). I have told my family and friends about my new freedom machine in a manner that leaves no doubt as to it being a positive move for me. Strangely the only negative person was my mum???? Oh well. She will just have to put up with it.

[@frentbow]

My GP is same, he is head of practice too, not a very good example. Fill out form for your worst days as the answers. Try asking GP for a social prescriber due to feeling isolated, mine filled in my blue badge application with me. I also just got a bus pass. I have CFS and fnd. Good luck.

[@kaitlyn__L]

I found I wasn’t believed until I bought mine second hand and they saw what a difference it made. Had to wait for my measurements to show up to buy it though. I know you have one already, but of course a wrong size can often make it worse rather than better.

[@StarryDreamer28]

I have CP and used a walker for PT in school for weight bearing, which was fine. but eventually it became obvious a wheelchair was just far more attainable to me. and alot better for my ankles. I made the decision my chair (which I always had) was better than what others thought was good for me

[@kaitlyn__L]

So much better on my ankles, knees, hips, and back! ✨✨✨

[@ek7652]

I think this video will be extremely helpful to a lot of people - since for non-disabled people wheelchairs are a taboo and my experience is that doctors refuse to discuss any mobility aids if you can walk at least a bit and are young. So, thank you for this, I believe many people struggle with this decision. I'm 23 and since I was 18 I was diagnosed with Tarlov cysts. They eroded my sacral bone, affected my nerves, I aquired various possible sexual dysfunctions, bladder problems, bowel problems... and sometimes leg problems. And mobility aids were (and still are!) an extremely tough topic for me because I've never known what to do. Can I walk? Yes. Do I lose balance? No (99% of the time). But can I walk as much as I'd like to? No. Does it have it's consequences? Yes. (leg tingling and twitching that won't let me sleep that day, pain, fatigue, swelling in the affected parts, trouble sitting on anything that isn't coccyx pillow). I still don't even know if I'm hurting myself like this because... doctors don't know anything about my condition where I live. And most doctors underplay it and say that conditions like that shouldn't cause any issues. But it greatly varies... in different country they want to perform a surgery (so discussion about mobility aids was refused because "once I'll be operated I'll be surely fine!"), but now I met another doctor who both takes the condition seriously yet doesn't recommend surgery because he says scars tissue could be far worse. Idk... but what I learned is that nobody will ever talk about the possibility of mobility aids.

[@TheMazinoz]

Talk to an occupational therapist or just research them and buy your own. I have HEDS, but not recognised for NDIS. It is a supposedly rare condition, hence little research generally and buggerall help from medical professionals. It is a case of DIY medicine. A lot of BS from doctors and physios. They blacklisted people with EDS and OA (which I also have) from Rheum departments in public hospitals in metro South Brisbane Australia.

[@ek7652]

@@TheMazinoz For some reason it's extremely hard to get to OT here (or more like... to the right OT), so I'll see... and when it comes to buying my own, I don't know if I'm such a good researcher to do that on my own / I don't know if I'd have enough money for it... I have hEDS/HSD too! (dxed as EDS by some doctors, as HSD by others)... but probably nobody ever heard about it here (except few geneticists) so... it doesn't really mean anything (not even people with genetic mutations are getting diagnosed here, I have friends with cEDS and vEDS mutations and they have no diagnosis). Sorry to hear that it's bad in Australia too!

[@frentbow]

I can emphasise having had same response from NHS professionals. I bought a chair online but it would have been more sensible to hire one first perhaps at shopmobility or another service because they are expensive and until you use one you don't know what to look for. I'm still getting used to mine. It does give me more freedom to go out without health consequence I get from walking. Good luck on your decision

[@ek7652]

@@frentbow I'm sorry to hear that you're going through a similar situation! It's so weird that general public has this picture of disabled person who always gets the aids that they need from doctors, yet in reality it seems like in most cases they're denied and have to get them themselves and have to themselves figure out all the features, sizing, prices, everything... it's unacceptable. Then it makes us - disabled people who look for potential info on mobility aids and trying to get mobility aids ourselves - as some sort of imposters who are in the wrong. Or at least I tend to feel that way. I'm glad it gives you more freedom! Thank you.

[@TheMazinoz]

@@ek7652 Is there an Independent Living organisation in your country? You could also try medical supply companies who have an orthotist on hand to advise about purchases. Or look at a cane or Walker. It is hard. If embarrassed or harassed about cane, there are also folding canes. It sucks that EDS is so underestimated. I was laughed at by a group of students a Prof Medicine was trying to educate about it. He also had HEDS. You have an often impossible job trying to educate the arrogant bastards about the condition.

[@ReyOfLight]

I’ve been a wheelchair user for 9,5 years and a bit now due to Ehlers-Danlos Syndrome. I decided to get a wheelchair when my ability to walk just got worse and worse and I ended up barely being able to go out at all because I just didn’t have the energy or ability to stand/walk as much as an activity called for, along with not doing well with sitting on hard chairs and such. With my chair I’ve been to concerts and a rock festival, expos and whatnot. I’m still limited due to my chronic pain, but I’m nowhere near as limited as I would be if I didn’t have my chair. I use my wheelchair close to full time when I’m outside of home, and I walk at home. For me the wheelchair is my safest, fastest and most energy efficient method to get around. If I try to walk more than I can handle (or even less at times) then I’m very likely to suffer from a bad pain flare afterwards, I’m extremely likely to deal with severe fatigue for days, I’m at risk of falling both due to balance issues and POTS issues (or joints randomly going out) and when I’m fatigued I’m also more likely to injure myself as I just don’t have the strength or focus to keep myself together and focus on proprioception. I never saw a wheelchair as a failure or letting my EDS win over me, I saw a wheelchair as a way to regain more mobility and freedom, and fight back against my EDS. Your mindset is really important when it comes to a wheelchair. It’s not a failure, it’s a way to fight back!

[@kaitlyn__L]

It’s so good to bring a decent chair with you to those locations! I too know the pain of having to sit on the floor when your back pain gets too bad. I’m really glad you also have a chair now!

[@ReyOfLight]

@@kaitlyn__L Or wanting to sit on the floor in desperation only to know you wouldn’t be able to get back up if you do or not wanting to get your clothes dirty along with floors being extremely uncomfortable as well… Was a constant battle before the wheelchair

[@danielledyson3949]

Hi, I just want to say how amazing you are for the content and videos you put out. They have been really helpful. I recently had to start using a wheelchair and with little knowledge and support out there , your videos are a god send and yours such an inspiring and positive person! Soo thank you for your videos and knowledge you pass on 🤗

[@Wheelsnoheels]

Ahhh so glad they have been helpful. Thank you for your support. 🙏🏼

[@Bendyzebra]

Useful tip for adjusting to using aids eg wheelchair/ rollator/ sticks - personalise your aid. Add pool noodle on the handles of sticks to reduce hand pain. Add tinsel/ colourful tape to decorate it to suit you - give your aids names. My crutches are bill and Ben. Power chair- odin and manual- loki.

[@TheMazinoz]

I use scooter or motor bike handles.

[@frentbow]

I love this. I do call my chair my buddy. I'm tempted to give her a name now. If I did personalise I think that would help too. I'm an ambulatory user. I struggle to tell myself I need it and family are unsupportive. Thanks for sharing your tip.

[@christomasjames6620]

Hey Gem love the video as always. Just wanted to say as someone who just brought a wheelchair, I had borrowed one from my mums friend. but all the points you raised I totally agree with my chair means I can now get out and enjoy life. I just did my first solo trip into my local village was really hard work but I did it, I did have a stop for a coffee and a chat with a friend.

[@pattyhuntsman8350]

Gem! Thank you for this video! Wish I had this info a few years ago, it would have made the transition much easier!

[@emily63874]

A couple of weeks ago I got a wheelchair with a PAWS attachment (like the Batec) as I can't walk far these days due to long covid. I considered different mobility aid options and this turned out to be the best choice for my circumstances. It's amazing and I love it. I'm still getting used to it and finding my energy limits with it but already I can travel much further than I've able to on foot for the last two and a half years and with minimal fatigue and pain. I was a bit nervous about getting a wheelchair, especially since I don't need one at home and still need to go for short walks for symptom management, but I've been surprised to find that I feel way more confident than I expected to. A lot of that is down to your videos so thank you for helping me with adjusting to being a wheelchair user Gem!

[@ConnyNordlicht]

For a long time I, a mobile wheelz-user, was asked: Do you need the wheels? You can let it home, then I needn't to put it out of the car!? Then I got bad eyes rolls and more when I said: The way to my next reachable chair (in church) I might reach on my own, but when it's later I can't go wherever I want. You don't want to sit right next to me hole time to help me go elsewhere? Because I'm not 100 % lame people often don't „allow“ me to use my best legs, my wheelz, and I often had to fight. Now, very ill, laying in bed with so much more pain and with impossibility to sit (dizzy immediatly and I fall at one side, in addition I don't have the power in hands, back or legs, not in my neck or in my arms to stay longer than max. 5 min. in wheelz) some call me and ask: when do you come back? When did you sleep(!!!) enough? Why don't you WANT to get up…!?!?! Icry bc of those questions, more than about the pain. Each day I train to get back to my wheelz, and if I can I'd be so glad! Why can't the others accept I'm ill without a plaster cast around me to show them where the sickness is to be seen. Or not. As weant. We're part of you all! We're hnuman being.

[@TheMazinoz]

Having an invisible disability sucks. I get this all the time too. We shouldnt have to justify or explain ourselves all the time.

[@frentbow]

So sorry you are experiencing this. Its hard to advocate for yourself when it's a struggle. It helped me to talk to someone. I asked my GP for help with talking to someone and I got put in touch with a social prescriber she calls me once a week for a chat and is non judgemental, it lifted my mood so much I got my confidence back. I am considering getting a sunflower lanyard, which indicates that you have a hidden disability. Free from tesco, sainsbury, Morriston, some banks. Mainly because I struggle at checkout and some people are impatient with me. You are not alone. I hope the comments here have helped

[@BeauMeztli]

It's tough when you need one but your doctors keep telling you that you don't need mobility aids, even less a wheelchair 😭 they seem to think that only if you're paralyzed you can use a wheelchair

[@Cynthia63636]

The thing that changed that for me is when i explain i really want to do things but i can't, explain that i will just walk for small things but also would be able to move more if i had a chair for when i need it.. i want to organize my house, but i can't pick up 1 thing put it away and then take a break for an hour.. because it will never get done.. I'm fat so they see me as lazy.. so when i explain how much i want to do mundain things they probably hate doing.. and a chair would help me do that, it's suddenly changed how they see me.. it's exhausting having to "manipulate" how you say the same thing but in a way they hear you... But it might help

[@frentbow]

My GP is same

[@esterfleurke9309]

So much to win still..... It can be tiresome, all the ableism

[@user-crpsdiaries]

I didn't go through my gp or surgeon because I knew they'd probably say the same. I went through an OT who saw the need & is doing the paperwork.

[@rickyknives9550]

I have pretty mild to moderate hEDS, and I have responded well to PT and rehabilitation and my mobility has improved significantly over the past year. Even so, I have a wheelchair since a few months back. Sometimes walking is just too much of a task, it takes too much energy, I can't do more than one thing in a day without spending the rest of the day, maybe a few days after, doing nothing because I have no energy. Using my wheelchair on the days where I need it has helped me conserve energy for things I love doing. Sure, I can work long shifts walking around at my barista job, but if I have to do something later in the day, I'll use my chair. I get to use my energy where I need to, and save energy where I can. I was worried that self-propelling would use up too much energy as well, but turns out that even though it's a arm workout (I weigh 95kgs in a 15kg chair, so I'm pushing around roughly 110kgs), it saves WAY more energy than walking would. I don't use my chair often, but it's a life saver when I need it. EDIT: Update to this comment: I've come to the conclusion that the wheelchair I have, an Etac Cross 6, is just NOT the chair for me. Despite working hard at gaining muscle and using the chair properly, it's actually actively worsening my independence in it. It's heavy, difficult to drive and bulky and I find myself actively choosing to not use it, even in situations where I desperately should. So currently looking at working with my OT to get a new lighter chair, hopefully an actual active wheelchair now!

[@TheMazinoz]

I get it. A trip to a doctor involving even a small amount of walking and public transport can wreck me for days afterwards. I'm going to try using a rollator and see if that suffices. Here I'm the one explaining HEDS to physios and OT's. Cheaper to just hire or buy equipment. Though a hospital physio / ER gave me a cane to use after seeing my hips xrays. Again, physio tested me for HEDS. They never believe me!! Always surprised.

[@frentbow]

I was bedbound then housebound due to chronic fatigue. I had to buy my own chair because my doctor won't give me physio or a walking assessment which means I got no financial help. This video perfectly explains why I need one. I feel like I stay indoors because no one has been supportive of me using a chair. I would love to use it more but I feel upset when I use it and the negative comments. I can walk with pain, poor balance, fatigue and will need 3 days rest after a short journey. A ten min walk takes me now 45 mind and I bench hop. How can I gain more confidence to use it. Its also doesn't fit through door it's a struggle to get it sideway through door when folded it's heavy, as well.

[@davdav3945]

Same here, thinking about an electric one 👀🫶🏼

[@KernowFishy]

Great vid thank you. I recently started to use a Wheelchair due to Ankylosing Spondilitis causing severe spinal pain. I can walk but only very briefly before severe pain sets in. I finally accepted I needed it and got over the "guilt" of getting one when my legs do work. I had internalized a lot of ableism. My last attempts to walk have lead to me nearly passing out so I went for it. I am so glad I did. Now I can go out with my wife around town or the coast and stay out for hours. It's life changing .

[@loupelizzo2399]

The decision in using a wheelchair is hard cause some people might think that people will only see the chair and they disappear and treated differently but my friend found the benefits outweighed what he thought. He has improved and he actually did loose anything but gained independence and he goes out more now but a day also goes in planning the day as well. Thank you so much for sharing this very positive video

[@leesullivan1916]

My short story Born with CP, But walking poor/no ballance....... FF 35 Years or so.. Artists in both knees, trapped nerve 2 places in spine. No self confidence falling over more the ever... So now I use a high end WC Outdoors.... So I can still wobble around work and furniture 🏄‍♂️ at home And maybe my knees will last another 10/15 years. Had a chair for about 5 years, best thing I ever did... I can nip to pub, nip to shops, nip to pub long pushes in summer nipping to pub ect.. 😀 Now my dad used to say it was the lazy option. LOL No dad a scooter is a lazy option for me... Draw backs.... Carpol tunnel problems 😡 No fun in wet weather. But on ballance, best thing I ever did. 😎

[@btm6692]

I just got on a wheelchair about 7 years because on numerous things with my back and sever balance issues. I have also start having problems with falling. Being in my wheelchair has let to be a part of society now.

[@alejandroroldanropero6604]

Thanks so much. 🧡

[@Max_LOZfan]

your channel has helped me so much in my disability journey, and this video is just such a beacon of light. thank you so much for your work, you help this mess seem so much clearer.

[@Alluska]

Ty for making a video about this! This is a thing that a lot more people that struggle need to hear! ❤

[@resqbikr]

I am an ambulatory wheelchair user due to severe dysautonomia and ehlers danlos syndrome. I get accused of faking all the time because I can technically walk, just not long distances or safely....

[@TheMazinoz]

I get it. I have HEDS, low blood pressure, OA in hips, CPPD in right knee. I can walk, BUT.

[@frentbow]

I can empathise I too am an ambulatory user. I find the negativity puts me off using a chair but I like another viewer comment of personalising the chair it might help

[@TheMazinoz]

@@frentbow Chair, cane, scooter, you are just going to encounter morons. You don't want to let morons dictate your life.

[@rewildingradikal]

Someone recently let me borrow their chair so I could go to rallies and I had NO IDEA it would be so helpful. Just found out they're letting me keep it! It's definitely a learning curve and strange being 24 and using a wheelchair (esp as a fat person, people think I'm just lazy), but it's so worth it!!!

[@saramessore9197]

THANK YOU for videos like these! It’s because of videos like yours that gave me to confidence to talk with my family, and finally being able to get a wheelchair (right in time for my birthday last week!). It’s been so exciting, and looking forward to going out in public with it and being able to last the whole day or even an hour compared to how it usually is!

[@MaryT-xb6sy]

I have a walking challenge. I've always walked most of my life. Now, I use canes (due to pains and steadying myself, but now I find when I have to get out and get some things, my body will start to ache and I feel tired. So, I am considering a wheelchair.

[@annettesuterswiss]

I have been using a wheelchair for 4 months due to Ehlers Danlos Syndrome that made my gait worse and my body weaker over years. In spring, I could not wald to the supermarket anymore, so I ate spaghetti and rice with nothing elase..then it got even worse- 200m by crutches and thats was it. I have seen it coming , the wheelchair for maybe yeards, and then for months. I only accepted aftrr another fall that lead mi to hospital. Next day i ordered a adaptive wheelchait desihned for my body, and have had a rented wheelchair. Plus a pulling thing with a big battery it is good fun as it drives up to 20 km per hous. These momemts are fut. Otherd are dcary. I am gonna travel from S 8:45 witzerland tonight bri Night jet to Berlon. Anx😊s but a

[@scirecoveryjourney5598]

Hats off you for your efforts it helps me a lot

[@LunaAutymn13]

I realised that I needed a wheelchair when my autoimmune disease is paralysing me from the waist down. It was the toughest decision, but it made my life SO MUCH easier!!! 🤩🤩 -- Nikki

[@ivansmith654]

Thank you thank you thank you!

[@MrsXx]

For 10 years I needed one but wasn't believed by Drs as I still had feeling in my legs, I started to believe because of that I didn't deserve one & was house bound/bedbound often. My joints are just too weak & bendy to carry me longer than a few steps with assistance thanks to hEDS. I was called lazy & depressed in my late teens when things got too disabling. I'm now at new Drs & have a fantastic occupational therapist who prescribed an electric wheelchair & it has been a life saver, just not needing to depend on my husband to carry me from room to room indoors.

[@jaynekavanagh4790]

Hi Gem love your channel i finally purchased a wheelchair. I have Lymphedema and its got worse i can only walk a couple of steps. I didnt want to get one but after watching this video it helped alot. Im so glad i did its changed my life as i couldn't get out i had cabin fever.

[@clairehenson6257]

Hi I find your videos and my partner had been through a lot due to his health as he uses a manual that can be turned into an electric chair and he has seen a big difference he doesn’t use it all the time but when he does he finds it a lot easier

[@beeb6730]

Fhis is a great video! Thanks for making it

[@Who-en2vo]

I have had a lot of chronic pain and need to go to a rheumatologist to properly get diagnosed with EDS. I've already had two months out of this year where I was mostly bed bound. I also used to be a PCA for mostly physically disabled people as well as doing elder and hospice care and I'm no longer well enough to do that and it's hard to accept that I may be getting to the point that I need to make a lot of life changes to preserve what mobility I have. At least I have years and years of life hacks from people I used to work for, apparently the first year of a major life changing disability is really hard then it gets easier. I can walk for 5 minutes before I feel my hip slip out and have intense searing pain... My pain scale is so skewed that several ruptured tendons in my wrist are "just annoying" and that's apparently supposed to be extremely painful

[@diouranke]

Sorry to hear about ur pain, are they doing anything for you as far as pain management or PT?

[@happybookishgirl]

If it would help you and you have the means, it is a disservice to yourself to delay. I can’t afford a chair, so I just stay home, but I never felt at all unsure or awkward about needing one or using one, just about getting one. LOL

[@LJC82SR]

I started using a wheelchair after my legs decided that they were going on an indefinite strike. I'm now in the process of convincing the collie that the wheelchair is not a sled and it is not for her to channel her inner husky/malamute when on walks. It is a slow journey. But not as slow as trying to walk her without the wheelchair.

[@frentbow]

I have a miniature schnauzer and I feel so guilty not walking her, we used to do six miles a day and hikes. My sis walks her. I'm still getting used to chair I think I would struggle to walk her from my chair.

[@kaitlyn__L]

That’s funny, one of my neighbours who also uses a wheelchair (we started talking over mine) loves letting her husky-mix-whatever pup pull her wheelchair along 😅

[@TheMazinoz]

@@kaitlyn__L I've seen people in our neighbourhood "walking" their huskies/malamutes from their car. Other have them pulling their bikes along! So a wheelchair. Why not!

[@climbingroses.70]

great videos on this topic,..I just watched another one and liked and shared both...😊

[@krystallitex7596]

my disability changes every hour . but my limit of walking with a stick is 10 mins . using my rollz walker has helped . having a walker that turns into a chair opens up days out with my family. but if i wanted to go out on my own i know im going to have to get a chair i can control. with my hand an nerve damage an electric one my be best. i know here in the uk many doctors dont tell you that they think you should use a cane walker or chair . even if you need them . they are not thinking about your fun days out . they are just thinking about the disability an how to manage that. an thats not there fault they want you better. So its down you you to work out if you need them or not sometimes.

[@frentbow]

I can relate to your comment. Thank you for sharing

[@kaitlyn__L]

Exactly! Every doctor of mine who raised concerns about a stick quickly ate them after they saw what a difference it made. One even suggested I look into a chair after that, though the others were still skeptical of that until again they saw how transformative it was and changed their tune. At least they were capable of that I suppose!

[@TheMazinoz]

It's worse in Australia for seniors over 65. Here you can only get mobility equipment prescribed by doctors for govt Medical Aid Subsidy Scheme if you need it to get around your house. No way you get help if you want to go outside the house to do things like shopping, socialise, study, etc.

[@Glitteryglows]

This helped me so much! ❤ I am so glad that I choose for freedom.

[@xpowerchairpositivityx]

After being stuck in the house for the last 12 years, with the exception of drs/hospital appointments, I was given an NHS transport chair which is horrendous in all ways as I can't use my arms to propel myself . It was too big to go on a bus and awkward for family to push. I wasn't coping well neither with not being in control of myself and my own safety so eventually after 8 months I was able to purchase a powerchair. I'm not confident in it yet and the paths and supposed drop curbs around my area have made me even more unconfident about going out that I've only been out twice so far in it. My biggest challenge is coming where I need to get to the Dr's and back in my chair and the day after that get on a bus for the first time ever as a powerchair/disabled user so I'm freaking out about it as I suffer from crippling anxiety. I don't want to upset anyone as I know I'm going to be slow at first and people in my area aren't very patient or understanding so any advice please before I have to travel would be appreciated.

[@boofyhalfpint8559]

Hi XLTX, I am also not very confident in my new power chair. I practice by doing laps around the house inside and out (hubby has put out a row of pot plants for me to practice manoeuvring around, that has helped A LOT) . Start on the slow speed and take your time, ignore any idiots and just enjoy the freedom of being able to go out without the aftermath.

[@wheelchairgeek]

If the NHS issued you a manual chair and you weren't able to propel it and so started using a powerchair you are allowed to ask for a review after 3 years and you will probably get given a powerchair.

[@frentbow]

Oh my gosh, this is me! To go to local shop in my power chain the dropped curb camber puts me in the road. So I got nervous to use it. I try different routes but I definitely need alot of practice even to get out my street! It's not easy. Good luck and I hope you make great progress

[@kaitlyn__L]

Some bus drivers can be absolutely terrible about “having to” do the ramp etc. Report them. Report them if they pull away while you’re getting situated, too. But once you meet one of the good ones, and my first time was one of them so it CAN happen, you can explain it’s your first time and they’ll explain everything and answer questions.

[@SmallWonda]

Very helpful - next visit to the Doc I'll be asking for a referral to the OT to be fitted for a wheel chair. I think it is an important point that one could be doing oneself more harm than good trying to stagger about & stay vertical, I think watching a few of your videos the light went on, that it would let me DO stuff, hopefully without hurting myself, give me back some life and ability to do things, rather than struggling to do the most basic of tasks which end in agony. Not sensible - it probably helps too, if you have switched-on medics! Keep safe & thanks for all you do.

[@feffer-.]

I have POTS + chronic fatigue and hypoglycemia as well as possible EDS. All of this combined causes extreme fatigue, body pains, and generally I just can’t stand or walk for prolonged periods of time without feeling really sick and dizzy. I’ve been on the verge of passing out just from walking around a festival for ten minutes. I’ve been considering using a cane or a wheelchair so that I can actually do stuff. The issue is that I’m pretty young and still live with my parents. Even after my POTS diagnosis, I don’t think my mom fully understands how much it affects my daily life. My dad just kind of brushed it off and doesn’t think it’s that bad. If anyone has any advice on how to ask my mother about this, please let me know!

[@hackethalbrian6174]

I was born bilateral club foot, now in mid life my feet and ankles are coming apart. I have been living in so much pain for so long. Decided to start using a wheelchair two months ago. It’s been liberating to have a pain free option!!

[@lizdyson3627]

Excellent. I've been trying to tell friends this advice for ages.

[@FireMonkeyLord]

Thank you so much for this video. I've been struggling with this question on and off for the last year. I've decided that a wheelchair is something that will help me. I can walk some days. But when I do, I'm suffering for it. I've gotten to the point where I'm too scared to walk more than a few minutes.