I hope this video is of use to some of you, and helps raise more awareness on why people may need to use a wheelchair, even if they can walk. I know a lot of you have been asking me about this topic, and a lot of you struggle with friends and family, who find it hard to understand. Please feel free to share this video on your socials. Gem xxx
Pronunciation... F-eye-bro-my-al-zhu .... chronic nerve pain and fatigue. ( its the disability I have) for example.... on a daily basis my nerve pain is horrendous in my legs and feet to the point when I wake up I feel like I just ran a 10k 3 days in a row making me not want to get up out of bed... having the ability to use a wheelchair allows me to function and get out more than I would if I had to walk ... I CAN walk short distances or in general I can walk.. but the problem is... once a arrive at that "short distance" location... I have no energy or Im in so much pain, I cant get BACK from that place... so now what do I do??? When Im able to use a wheelchair I am able to enjoy my life more than when I am forced to walk on legs that are in so much pain, and able-bodied person could never understand the tolerance we (as people with chronic pain) have to have against our pain in order to function everyday!
I have POTS and a musculoskeletal disorder(still waiting to see a rheumatologist) and I use a wheelchair whenever I leave my dorm. However sometimes the situation makes bringing my chair really difficult, like if my friends and I are driving to go out to eat, so I use a cane or put on a bunch of braces.
Wheelsnoheels - Gem Hubbard I have. Cerebral palsy and in my case I made the mistake of using a walker and crutches in school instead of a wheelchair but that was do to a parent being embraced or whatever or annoyed never really asked why she wanted me walking all the time but long story short. I now have to use me chair more often do to lower back pain do to school and caring my backpack but anyway keep up the good videos I enjoy your blogs with your husband and daughter I found your channel from another wheelchair users channel wheelstowalk
I can walk for 5 or 10 minutes but I can’t stand for more than a couple of minutes because of my bad back. So I decided to buy a wheelchair to give me some freedom of movements .
tetsubo57 I wish everyone thought like you do! I get asked why I’m in a chair occasionally and I hate it. I’m going to remember your comment from now on. Many thanks!
I love you videos! I've got EDS and use a chair quite a lot. Im quite a tall person and I was out shopping a while ago. A shorter lady was asking a shop assistant to reach something off the top shelf. The shop assistant couldn't reach either so she went off to find a ladder. I wheeled over and offered to get it for her and she kinda laughed. So I stood up, grabbed the item, handed it to her and wheeled off. Her face just dropped!
That's hilarious! Though I hope the lady sees this vid (or other awareness stuff about wheelchair users that are able to stand) so that the experience made sense to her! Good on you for being brave enough to do that, I don't know if I could!
Just wanted to add as someone with M.E that it’s a lot lot more than just fatigue. It also causes pain, balance and co-ordination problems, dizziness, weakness and more. Also even on a “good” day using the chair can prevent post exertion malaise which is a significant increase in symptoms after any amount of activity (physical/emotional/mental). I have crutches, a manual chair and an electric chair. I can’t use my manual without assistance as I can only push myself for short distances on very flat floor. My electric gives me the independence to do things alone.
Thanks for recognizing and mentioning ME/CFS as a reason to use a wheelchair! In addition to helping prevent a ‘crash’ (in severe cases expending energy-even walking-can permanently worsen our condition). Plus, a lot of us have concomitant dysautonomia/NMH/POTS, which causes rapid heart rate and/or low blood pressure while standing, so we may not physically be able to walk without fainting.
Thanks for producing this! I've had Long Covid for a year and a half with chronic fatigue and chronic leg pain that has basically made me a shut-in. I'm in the process of applying for a chair right now through my insurance with the full support of my doctor and PT. It'll be nice to have a social life again!
I Hope you were able to get a chair! I’ve been struggling with long Covid and have developed other illnesses (pots, me…) it’s wild how much one I’ll was has changed my life.. I’ve been using a cane when I have to go out for apointments but am thinking about a chair. Sorry for the ramble, sending you good wishes and all the spoons!!!
I really appreciate that you looked into something that doesn’t specifically apply to you and made a video about it. It shows you have empathy. Which is getting more and more rare these days. More proof you’re an awesome human being!!!
EDS (and comorbidities) wheelchair user here. Thank you for raising awareness and doing it so well. Love this, it reminded me of your invisible illness awareness video. You are incredibly generous and kind. 😘❤️💪🏼👌🏽
EDSer here too! You may want to look into getting diagnosed. It's genetic and your daughter could also have it. Mine is worse than my mom's. So it's best if you know.
People unthinkingly put so much negative baggage on wheelchairs and their users, from "ended up in a wheelchair" to "confined to". No other form of transport attracts such negative connotations.
“If you can stand, why would you ever need to sit down? Now take your current leg strength and stamina, and think about one half or one quarter that. Then ask the question again.”
I nearly gave a new friend a heart attack when I stood up. We were in the cafeteria of a job training centre. I was getting a numb arse, so decided to stand up. She was looking the other way, but turned round when I was my full height (less than 5ft). She actually gasped!
i know this is an older video, but one reason im getting a wheelchair soon is because along with fibromylagia/chronic pain, i also have pretty severe plantar fasciitis that ive had since i was a toddler. for those who dont know, its a shortening of the ligament on the bottom of your foot, which causes standing and walking for extended periods of time to become very painful due to it stretching out the bottom of your foot. because ive had it for so long, it's also caused a shortening of my achilles tendons, which then has affected my ankles, knees, thighs, hips, and lower back. in short, even just standing for too long can really hurt, and it takes a long time for that soreness to wear off!! it's taken a bit longer than i like, but im finally getting my first wheelchair soon before i start college to help me really improve my quality of life and to help me conserve my energy for better things like focusing on school and socializing rather than being utterly overwhelmed by pain and being too scared to go out on fun outtings because i worry about how badly it might end up hurting
Whoop whoop, another EDS wheelchair user here! Two years ago I only used it when I went shopping or something, but now I can not walk anymore. (Well.. I can walk 1 minute, so I can walk from chair to chair)
Another reason people might use a wheelchair: movement disorders. There are so many types of movement disorders, but they can make walking difficult, especially long distances.
Thank you for talking about this. People aren't aware of ambulatory wheelchair users and it's frustrating... it can be especially hard to read accusatory and awful comments from paralyzed wheelchair users towards wheelchair users who aren't paralyzed and can walk.
M.E/C.F.S here, some days ill walk around my local shop without much of an issue, then the next day ill be using my wheelchair (for those low spoons days!) and ill get the workers there asking "oh, what happened to you?" "what have you done now?", with a lot of effort, i can just about hold back my eye roll and laugh it off so i dont have to explain Love this video and i love that you spread awareness
@@alexafreier6049 I've had it relatively easy compared to many others with the same illness. Six years ago, I had an infection caused by the citomegalo virus, which is basically pheiphers, just a different virus. That was diagnosed after three months and when the complaints didn't go away, I got the diagnosis for CFS. So I was only without a diagnosis for the first three months of illness. A diagnosis doesn't make a condition more real, but it makes it a lot easier to be taken seriously. When I first got ill, I was in my first year of my studies. After that, it was a long road of trying to find what is posible and what is not, learning to find my bounderies and a lot of boring medical stuff. It has been six years now. For a few years I functioned at about 50% and had fatique as the only symtom. The last two to two and a half years it has slowly gotten worse. I have a lot less energy and have gotten a few extra symtoms as well. Still, I am trying to get my degree, now in a different field, more fitting to what I can and cannot do. I spend most of my time in bed, but I am able to take care of myself, to study, be it at less then half the 'normal' pace, and to have a social life. I don't have a wheelchair, but I do occacinally rent an electric scooter when I would otherwise need to walk a lot. When going to a zoo for example, I would be able to walk, but then it would be so tiring, I would not be able to enjoy myself and it would take me weeks to get back from that. When using a scooter for the day, I would be back to my normal in a week, maybe a week and a half.
I am a part time wheelchairuser because of my multiple sclerosis. On my bad days I need it desperately and on some of the spare good days I can walk short distances. I remember so well when my neighbour watched me leaving the house without my wheelchair and later in the afternoon returning in my wheelchair. She looked stunning!! Never forget that face! And some people only know me in my wheelchair and are ver surprised when I open the door standing and only using a cane. Well, it depends on good and bad days as I said and it also depends on what the plans are for the day. But when someone asks me about why I am in my wheelchair I answer: because I need it. And nothing more. That leaves them silent. Wishing you a great day! Gem, thanks for this wonderful video! sincerely Britta aka busdriverwithms
Shared! I'm not a wheelchair user, but my brother was during his cancer treatment. I have a few chronic illnesses so I have to prepare myself that I may need to use a wheelchair occasionally in the future should things get worse for me. This is a great informative video!
Lol wish my mom could hear this. I’m in the process of getting my first chair (I’m super lost and super nervous) for POTS and EDS. I can walk, but often times (especially in the heat) I get lightheaded, exhausted, and I usually flare if I push myself too far, causing me to be bed bound for 1-3 days. My parents don’t get it, they think that since I can walk I should push through and try everything anyway, even though I’ve limited what I do and end up missing out on things that I can’t do anymore. I want a wheelchair for more freedom. My parents see it as me exaggerating and giving up
Dude, I hope you are doing fine. As far as parents and other loved ones goes - either they respect your choice or they don't. If they don't, it's really their issue, not yours, and you shouldn't make too much effort defending yourself. I find that there are three types when it come to attitude towards (especially closer family and friends) on wheelchair use. 1. The ones that respect it. 2. The ones that just don't get it. 3. The ones that don't respect it. Look. I use mostly two mobility aids. Forearm crutches and a manual wheelchair. It's because of fm. Every day is different, but mostly it causes widespread pain, fatigue and because of fatigue, decreased balance. The kids would say I walk like a newborn calf or something haha. Some days I feel well enough to even run ( but I use my brain, and don't do it haha). I got all those categories of people in my circle. It can be annoying to feel like you have to defend and explain. The trick is to not do it. Obviously you share with people worth sharing with. But those will understand and respect. The problem your parents have is that they probably want you to be healthy, if they love you hehe which most parents do, it's probably some sort of denial. The paradox they have to get is that chair means not giving up, but actually it means starting to live life. Anyway that's how it is for me. Without aids, I am confined to just existing on my sofa on bad days. With - I can be active again. Dude. Make the best out of your life. And when people wonder and are curious - make sure you remember that YOU are the one who decides how much you want to share and how much of an explaination you want to give them. If you don't wanna tell them much, either serve them such an unbelievable story that they regret they asked in the first place, or you simply say - it's really not something I wanna discuss with anyone at this point. Hehe - some will respect it, some won't. But at the end of the day it's not your responsibility. I have close family who asked me in the beginning. I asked them - do you know what fibromyalgia is? They be like: Yes. (they probably feel stupid for not knowing what it is). Then I'll explain about pain and fatigue. Worth to say I'm a bit overweight because of a decade of ignoring my physical and mental needs. Then they will start to ask stupid questions: But - what is the problem? Is it your knees? I see your knees fail when you walk - surely it has to be in your knees! Nah... People can be annoying. And some people don't know their boundries, and some people should go home and teach themselves some common sense. If you want your freedom - and every human should have equal oportunity to make the best they can out of their lives with the oportunities we have - that means you have to stop caring what people might think. Coz it doesn't matter. What matters is that you have your freedom :). To some it's a paradox that doesn't compute hehe, and the ones that get it, will understand that you - using the chair - is as active and have as much freedom as u can in it and it's worse without it. Enough ranting. Hope you are doing ok! :)
From experience: don't try to convince them. When they see what a huge difference it begins to make, they'll come around. My people all did. And if they don't, then they don't. You are in control of your quality of life. You do what you must!
I have diaplegic cerebral palsy and I am quite capable of walking independently for short periods of time but I will get pain. You are raising awareness of an important thing as I always find people are shocked to find you can walk and assume that you never actually needed a wheelchair in the first place! Great video!
I have some weird joint and bone deformities so it makes life so much easier to just use a wheelchair due to pain. I often get judged for doing so, but I understand it is because many are consumed by these misconceptions about wheelchairs and their users.
Thank you for making this video. I have (JHS) Joint Hypermobility Syndrome along with Chronic Pain Syndrome and Chronic Fatigue Syndrome. I got my own self propelled wheelchair in May and it's given me so much freedom. I'm able to go out with my friends for longer and actually enjoy myself. Thank you for raising awareness. So many people have given me bad looks for moving my legs in my wheelchair, and questioned why I have one, and it's annoying having to explain yourself all the time.
I have R C P S for the hips down some days I'm in a wheelchair some not it just depends on wat we are doing i get funny looks off people because 1 day i might be walking but the next day in my wheelchair
I've actually had the opposite experience. I have Spina Bifida and walk with crutches. I've been asked numerous times why i don't just use a wheelchair. One lady kept at it after her initial question that i answered that i don't use one because i am able to walk on crutches. Later, she said "I think you would do so much better in a wheelchair. It would be so much easier for you". I finally had enough and told her she is only seeing one short period of time in my life and it may look to her that i am struggling, bur I'm not. It's just how I walk. I also told her my house has steps up into it and is very small so a wheelcair wouldn't work in the house. Furthermore, walking is my exercise and keeps my strength up. I think i don't have a lot of the problems other people with SB have when they are in wheelchairs because it also helps my circularion. I said all of this, rather irritated, in fromt of about 10 people. I didn't care. She had no right to tell me what she thinks is best for me.
I have Lyme disease which causes chronic pain and fatigue, and I also have POTS which causes blood pressure issues and fainting. I'm looking into getting a wheelchair for these issues because they've gotten really severe. Your videos have been very helpful to me so thank you.
I have fibromyalgia and use a chair sometimes, my husband has diabetes, neuropathy and kidney disease which cause pain and fatigue so he uses a chair when we are out and about also. Another reason someone may use a chair is POTS, which is a disorder that can cause sudden fainting because the blood pressure drops suddenly with certain movements. So a wheelchair can be very useful for that, I know some people with POTS need a chair that is angled back to prevent fainting in a sitting up position.
I have Spina Bifida, which I was born with, and have been a full-time wheelchair user since the age of two, but know many friends with the same disability that have varying levels of mobility from needing crutches, to electric wheelchairs, to not needing any mobility assistance at all. So glad you made this video! 👩🏻🦽❤️
The part that really irritates me is when people ask why your in a wheelchair. For me its ncl type four so its an eternal struggle to explain something so rare (im 8th worldwide)
Im hearing ya!!!! It took a while to discover it was a spinal cord injury that prevents me form walking properly. Before I had the diagnosis, it was pretty hard. Before I did have the diagnosis, I would sometimes white like (if I wasn't seeing the person again.) I would say, oh I was born like it, or its ceribal palsy. Something people kinda heard of and could be like, oh ok, and get on with their day. I actually have a video on this if you haven't seen it already? "the question we all dread." xx
@@Wheelsnoheels my mother has cp and can walk for a little bit but refuses to use a mobility aid. It’s alright if she prefers that, but my issues require a wheelchair or rollator. I can’t get very far without it.
Thank you for this so helpful I have brain injury fibromyalgia and vertigo as well as chronic pain and legs refuse to work correctly .I’ve just recently started going out in a electric chair as was in for a year.some people stare at you some laugh others including my family have been fantastic .you always make me feel much better when I watch these videos thank you x
I'm so glad someone has done a video about this as I'm a wheelchair user but I can walk to a degree and everyone even some family members say I'm faking as can walk too but not far or for very long
Loved this I’m sharing it everywhere! I have eds fibromyalgia and chronic fatigue syndrome so walking far is not an option, my chair helps me to go for shopping trips and days out that just wouldn’t be an option otherwise xx
Alexa Freier Like most chronic diseases (e.g., MS), It exists on spectrum, and it can have a waxing and waning quality. There are good days and bad days with it. But at its worst, it is one of the most horrendous diseases out there, and it can kill you. me-pedia.org/wiki/Severe_and_very_severe_ME
I ha e lupus and use a wheelchair part time. People are very judgemental about it. Bottom line is I just want to enjoy a day trip with my family and this is the only way it can happen.
Lupus here too! It's been such a game changer for me using one too and I'm sorry you've dealt with that as well. I'd much rather use my wheelchair and have that family time, I understand 🫂💜
I have complex regional pain syndrome and can walk but it is so painful if I walk far so I need a chair to help me socialise or I would be stuck inside my house all the time. Thank you for this
When the dr. put in his recommendations for me after some diagnostic testing, "wheelchair use discouraged", I could kind of see where he was coming from, but ultimately I was like "haha - not on your _life",_ since that was literally the only thing that was allowing me to get out and do a lot of the things I wanted to do, since I couldn't walk very far in certain situations (still can't), and in the almost 3 years since then, I've discovered that the condition that the testing was for is not the main cause of my limited ability to walk, though it has been a contributing factor at times, so using my chair as much as I want/need to isn't going to worsen that condition, no matter what that dr. thinks (that day was the only time I've ever seen him, and I very well might never see him again except _maybe_ in passing).
Thank you for doing this video, so many people think that if you don't "look" like you need a chair you are pretending. I have a friend who is unable to walk long distances and needs the use of a power scooter and he gets funny looks when he gets up and walks into a business.
I’ve had mine for about 2 years and man is it awesome! I’ve had CP all my life but didn’t use a chair until two years ago. I am a part-time user I use it for a long walks with my dogs or if my family and I are in a hurry to get somewhere I know longer feel like I’m holding people up, and it definitely helps with pain I can be out and about and if I have a flair It’s there for me and I can still do my job, and be out with friends and family and not stuck at home on the couch due to my pain.
Just pulled this up as I am having such a hard time getting out of the house to use my new chair! I have EDS, and bilateral club feet that are a mess, thanks to my hypermobility, and other issues. Even just cooking dinner leaves me at an 8/10 pain. When I got my chair, I told my friends Mother, and she said “you’re not really going to let yourself GO into a chair, are you??” No, I’m going to gain the chance to leave me house, to “walk” my dogs, to do something beyond walk from room, to room, in my house. I’m still struggling internally with using it, I don’t have ramps yet, and you can just see people judging when you stand to get in the chair, or stand to yank the chair out of the van. How do part time chair users here deal with that?
me! I have a lumbar disc impinging on my leg nerves, which is inoperable...it hurts so much to walk. Of course I can't explain that to everyone. Screw it, I don't care what people think, I want my quality of life back!
I have a similar situation (scoliosis, stenosis, sciatica). The only thing they can do is a full spinal fusion. I think that would cause more problems than it would be worth. I’m looking into getting my first chair.
Thank you for mentioning Fibromyalgia (fibro or fm)! I have that and I use a wheelchair to get outside. I'm waiting on getting my own manual wheelchair with an electric motor so I can get around better. There is also a lot of people with Fibro that doesn't need a wheelchair and can live a quite good life. I'm not good at explaining stuff, but feel free to ask me questions about Fibro (my experience with it). Also, is it possible that you can have voiceover when you have text on the screen you don't say so that the blind people can know it is there? It would also be awesome if you could add subtitles that are no auto generated from TH-cam. Just some tips :D
its 3 years later but i have joint hypermobility and maybe fibro (waiting for the diagnosis) and I'm thinking about getting a wheelchair for days out and bad days but aren't fully sure if it'll be helpful. What's you experience with a wheelchair now? does it help with the tiredness, does it make your shoulders worse with self-propelling? Trying to figure out if a wheelchair is good for me or not before seeing my GP to ask.
Thank you so much for making this video. I have POTS and have only recently started using mobility aids, though I should’ve done so years ago. The stress of being confronted is real and always on my mind. I hope everyone sees this video.
Thank you for this video and to all the commenters here. Made me feel a bit better about this subject. I was looking into getting a manual chair and for whatever reason, felt almost "ashamed" because I can still walk sometimes so society makes me feel like it's wrong or something.
7:47 You totally nailed cerebral palsy. There is a variety of symptoms tho. Some of us can walk others don't. I prefer being in my chair as it's easier in my everyday life.
I USE A WHEELCHAIR FOR TRANPORTATION BECAUSE I HAVE LOST ABOUUT HALF OF THE RIGHT SIDE OF MY LOWER BODY DO TO WHEN I WAS WAS 13 I WAS HIT BY A CAR. : ( BUT I SURVIVED SO DO NOT FEEL TO BAD. I ONLY LOST HALF OF MY LOWER RIGHT LEG AND I AM SO PROUD OF HOW I AM NOT THAT UPSET ABOUT IT I AM JUST READY FOR WHAT WILL COME UP NEXT.
Maxi buggies: a larger version of the kind of buggy toddlers use that are for disabled kids who are too big for a normal buggy but still have the same needs. Attendant pushed chairs: all 4 wheels are small as they are not intended to be self propelled at all (very frustrating to use even if you can’t self propels as it takes away the ability to even adjust slightly where you have been parked).
I love how much awareness this video has brought and will bring, I have Hypermobile type Ehlers-Danlos Syndrome which also caused me to have Osteoarthritis and scoliosis but I also have a condition called Postural Orthostatic Tachycardia Syndrome (or p.o.t.s. for short) and if I walk or stand for longer than roughly 10-15 minutes then I get super dizzy and lightheaded and can pass out. So because of that I use a wheelchair, I'm an ambulatory wheelchair user and the fact that so many people look at me weird or tell me I'm faking my illness because I can still walk but I use a wheelchair not only makes me upset but also makes so difficult when I try to explain why I am using a wheelchair instead of walking and some people are great and after I explain they sort of understand but others think I am just lying or making excuses or they don't even let me explain, and its so difficult feeling like I have to explain myself every time I go out in public if I stand to reach something on a taller shelf in a store or what not. I really hope this video helps people who don't understand and jump to conclusions, get a better understanding of why people who are still able to walk need to use wheelchairs and that they actually take this information to heart because the world would be so much better for it if they did.
I have Osteogenesis Imperfecta (OI), a brittle bone disease. I broke and fractured dozens of times my limbs when I was younger. Even though I'm mobile enough to walk somewhat a manual chair makes me able to get around easily. There are varying degrees of severity with OI, and others I know with the condition use a chair to different extents for different reasons. Can't tell you how many times strangers have seen me stand or transfer and asked "why i'm in that thing." Thanks for making this awesome video!
Thank you so much for this video and clarifying this. I am barely able to walk anymore but my friends and family think I'm "giving up" if I decide to get a wheelchair which I think is just plain unfair. I just want to be able to reconnect with my social life and be able to get outside which I cannot do like this. So thank you for this!
i couldn’t help but get somewhat excited when you mentioned EDS, it’s little known and when people do know about it they don’t always know the extent. While right now i don’t use a wheelchair as often as i used to, EDS has permanently taken the ability for me to eat or use my bladder, it’s always nice to hear EDS being mentioned 😊
Thank you for putting your content out there. I suffer from a number of conditions that affect my mobility and cause pain and fatigue. Getting about on crutches or my knees has become more and more unbearable over the past 7years. To the point I have stopped going out anywhere unless it's absolutely necessary. I was so afraid to get a wheelchair, because I felt like some kind of fraud that I could struggle without one. But I realise doing so is causing me more harm. So I have just recently got a NHS wheelchair, and am learning to use it in my home. I am really struggling however to go out and be seen! I never thought peoples perceptions would be such a massive worry for me. I will be going out tonight, just to get used to using it outdoors, getting up and down kerbs etc. Hopefully it will give me the confidence to go out for a few hours and face my fears. It's hopefully going to be a big help for me to get some sort of life back, get out more and hopefully socialise more again.
Thank you so much! Walking and standing more than a short distance is incredibly hard for me, due to lupus (extreme fatigue) and scoliosis. We have recently made the decision that I would benefit from a chair, and I've been incredibly nervous about the reactions I'll receive. :/
I have EDS and many associated co-morbidities. I wouldn't have the same quality of life without my Aero Z and Smart Drive. Falling and breaking my wrist in 2 places due to a hip dislocation was the final straw for myself and my doctors.
Very inspiring I have two cousins with cp (cerebral palsy ) both quadriplegic but different ends of the scale. It helps to raise awareness and I think it’s great so thank you x
My Boyfriend is using a wheelchair for long distances. He is able to walk but not for long. He has multiple sclerosis and had a problem with his sence of balance that never healed (sry for the bad English 😂 I am from Germany). So when he walks it's like he is drunk on a board with high motion of the sea and his brain tries to balance that and that exhaust him a lot and he needs a break after just 20 meters and he is walking really slowly cause he needs to have safe steps. He is also using a walking stick and a walking frame. But for long distances the wheelchair is the best. It is a manual wheelchair with electric supports in the wheels (no joystick) as he started using the wheelchair this year, many people who know him also asked why he is using it. It makes life easier for him. He can now go on a "walk" in the Zoo and Theme parks etc :) this is so nice, and we both need to learn how to use it. I need to learn that I can't just grab the wheelchair and push him etc. But it's leaning by doing.
Thank goodness for this video. I have just got an electric wheelchair, I can walk but struggle after a short time due to back and joint disorders. I get asked the same thing, if I can walk, why use a chair.
Thank you for this important, informative video, and a special thanks to you for mentioning ME/CFS and fibromyalgia. These are complex, chronic diseases that haven’t yet gained enough ‘street cred’ to be wholly accepted by many in the medical community, yet 25% of people with ME are housebound or bedbound, and there are as many wheelchair users with ME as with MS. Incidentally, MS was dismissed as ‘hysterical paralysis’ before MRI technology came on the scene and allowed doctors to see the demyelinating brain lesions present in MS . I’m sure the current attitude towards ME and fibromyalgia will change once there is a simple mainstream test showing pathology, but that would require investment in research. Research funding for these incredibly disabling diseases is paltry compared to the disease burden, but hopefully that will change soon.
I have fibromyalgia. I used to choose to walk quite often but after a severe knee injury, it's become too painful collectively for me to continue doing so. I'm quite happy with my wheelchair but because I can stand, a lot of people think I'm faking it or am just too lazy to walk. It's incredibly frustrating, so thank you for spreading awareness on this issue!
yes! im so nervous about using a wheelchair bc i feel like im not "disabled enough" or something. even though my bad days are rare, they can be bad enough that even turning my head is extremely dizzying.
Being hyper mobile with osteoarthritis and fibromyalgia can make life very tough so chair is Essential thanks for the great vids I recently developed functinal neurological disorder now Im off my legs withh loo issues too hoping to improve Chin up being positive so important cheers for the lighthearted support great job
I'm a wheelchair user, and for awhile my family didn't believe I needed a wheelchair since I'm not paralyzed. They learned real quick why when they saw me transfer from the wheelchair to a regular chair. They saw my legs just don't move for me anymore. Now the eyes have quit rolling so loud. lol
Also Hybrid Wheelchair, Which is what I use with my CFS/ME. its a Manual wheelchair or Electric wheelchair depending on what setting I set it. you do need to set up the wheels and cant do both at the same time as that is dangerous but lets say I'm on a hill and go up using the electric part ,when I'm up I can(while still sitting) push the motor up and let the wheels go free and then I'm in Manual mode :). However It's a very heavy one so I can't really manually push myself but when the motor runs out , people can push me or I can walk behind it while still having some extra support. It's also Thanks to you for finally taking this step to be comfortable enough to get my wheelchair and it's changing my life, I can finally go out again and live my best life as a 23
Hi Just Found your channel and like you I have had a lot of spinal issues since 2006, I have just been through another operation in January 2022. since then I have been using my wheelchair more as I find it the best way to get around, I still use my walking stick to walk too just not far as I still get so tired. your channel is great for me as its made me relilaze that im not alone in what im going through. im lucky too have a great wife and parents to keep me sane as someday I really do struggle, but seeing you really helped so thanks,
Thank you for your videos! I’ve had severe scoliosis, and other spinal conditions for over 20 years. I am now at the point that I cannot walk or stand for more than 5 minutes (15 if I take steroids). I am researching electric wheelchairs and scooters so I can once again travel, go to museums, etc. I feel guilty and often think I don’t deserve a chair. I appreciate hearing from ambulatory wheelchair users.
Hello from Ashburton, New Zealand, I have electric wheelchair my diagnosis is Functional neurological disorder, F.N.D, started with hyper mobility at age 10 Fibromyalgia age 18, miagranes both of my children have EDS type 2 diagnosis with fibromyalgia an migraines. An one is on crutches still mobile but steady decline while our other has scoliosis as well. i use a chair to manage my fatigue and helps with my f.n.d pain. I found this channel looking for other positive people who love life but it's a challenge.
Hi you mentioned cerebral palsy (cp) which I have. Cp is a result from a brain injury when a person is under 2 year of age. It effects the communication between your muscles and your brain which leads to spams, weekness, and in bad cases being paralyzed. I am lucky enough to be able to walk with the help of crutches but on bad or long days I use a scooter. I hope this helps. :)
As a younger Fibromyalgia sufferer with a partner who has Complex Regional Pain Syndrome - chairs will most likely become a way of our lives as we get more and more active with professional careers. I think a lot of the problem is - a lot of people who aren't disabled see chairs as something that is DISABLING rather than the perspective that chairs are actually ENABLING the users to be more active and do things that they might otherwise consistently could not. That's certainly my perspective on it anyway, I aim to get one when I move to a more disabled friendly area (currently I cannot use a chair on country roads) as it will allow me to do more and be around more for the things I find important. I'd be able to give myself more control and predictability than my otherwise shoddy body provides! Please feel free to add anything/chat to me about your experience - I'm open to communicating about Fibro :) I do a lot on my social media!
I think able bodied people see wheelchairs as disabling, because if you can walk and run and do stairs just fine, a wheelchair would make things harder. They don’t necessarily understand how exhausting or difficult walking can be
I have EDS and POTS (postural orthostatic tachycardia syndrome) which is a heart condition that makes me very prone to fainting. Last year I almost died from unexplained nausea and vomiting and found my chronic fatigue to be too much. I got a wheelchair from Amazon since my body was NOT in any shape to even go through the wheelchair assessment. I still have it and use it all the time! It’s given me my life back and I am forever grateful for the people who bought it for me. I’m not paralyzed but I still need my wheelchair! ❤
I basically have severe ME/CFS and fibromyalgia. I am not able to stand or walk easily, so I use a wheelchair most of the time except at home (my home is not wheelchair accessible). It has allowed me to do like 4 errands instead of 2 errands and being too exhausted/in pain to continue my day. :) Gem-Fibromyalgia is a hard word to pronounce! Fy-bro-my-Al-juh. :)
Alexa, of course! There is so much to explain, and it effects every patient differently. I look at it as a spectrum: some people are able to work full time, but have to sleep as soon as they get home to get up for work the next day; Some are bed-bound with no light and no sound because it can be so excrutiating. Here is a link that gives a really good overview: www.meassociation.org.uk/about/what-is-mecfs/ CFS usually happens after an illness, but that illness can be serious or very common. I noticed having to rest a lot more and some muscular pain in Feb of 2017 after having walking pneumonia for about 6-12 weeks. But it was the end of January this year that I began having extreme muscular pain; I thought it was fibro until recently when I learned about ME. Walking is extremely difficult and painful for me, I nearly pass out from standing even slowly; I have severe brain fog and memory loss (I used to remember everything-now my husband and I have important memberable conversations and I can't even recall them). I have begun losing my hearing so badly that I recently went to a concert of a band I'm familiar with, and couldn't make out the words of the singer. I was in the very front row. I use a wheelchair to get around most of the time now, and I have a service animal specifically for mobility whereas before I only used one for PTSD. The biggest thing with CFS is that we have post-exertion fatigue. I used to be on my feet 8am-midnight. Now I can hardly go to the grocery store and run an errand without having to rest the remainder of the day or even the next day. There are a lot of people who are better off than me, but there are even more that are worse. I hope this info helps! There is also a tedtalk on TH-cam about it that is very helpful.
th-cam.com/video/Fb3yp4uJhq0/w-d-xo.html Here is the video I was talking about. This was my first exposure to info on ME. Most doctors don't know about ME and others don't think the patient is being truthful. This video is a good starting point for anyone wanting more info on ME from someone who actually has it.
mm, I'm an ambulatory wheelchair user, was advised to get one by my neurologist, particularly for long distances. I have a condition called progressive spastic paraparesis, as well as bilateral cavovarus deformities in both feet. I can walk with crutches, but this is becoming harder for me. The main elements of spastic paraparesis are stiffness and pain (I've made some videos about my journey, took me over 5 years to get diagnosed). The treatment is, in the first instance, medication - Baclofen is often used, so are certain benzodiazepines, particularly Clonazopam. The first neurologist I saw thought I might have dopa responsive dystonia, which is treated with L-dopa, which is also used in the treatment of Parkinsons, so I tried that first. I had a bad reaction to all of these medications, so the next step was neuro-physiotherapy, which unfortunately hasnt worked for me because of the deformities I have in my feet. I am currently waiting to have botox injections as part of neuro rehabilitation and, if that doesnt work, I may have to have surgery on my feet and then possibly have neuro-physiotherapy to help with the muscles. I'm leaving the link to the playlist of videos Ive done about the medical journey Ive been on (5 MRIs, a bit of electrical testing and several genetic blood tests) here if thats ok and if you want to check it out. Take care. :o) th-cam.com/play/PLjEwJi_FcfuZa_riPHfKi0EL8IsgAdZSr.html
I have fibromyalgia and hypermobility, I mostly use crutches but use my chair for bad pain days and longer journeys because I get a lot of joint pain that makes it hard to walk :)
I use a wheelchair myself and I can walk I have several chronic illnesses and fibromyalgia is one and COPD I get dizzy and nasuas it's hard for me to stand and walk for long and people tend to think I'm a fraud it's upsetting but I hope people learn that the wheelchair can be used for many reasons
I also have a manual reclining wheelchair with elevating legrests which is what I used a lot when my ME/CFS (and POTS) was more severe and before I had my rigid manual wheelchair (which I’m hopefully getting a SmartDrive for soon). The downside is its weight and size but it’s great for when I need to be more reclined / lying down. It’s a lifesaver during ER trips and 6+++ hour waits.
Chantel York I started out my evaluation with that but no single chair was ever going to meet all of my needs and I was able to get a reclining manual wheelchair for ~$400 (mayyybe $400-500?) Canadian, I think, on eBay through the US and getting my manual rigid ultralight chair, which cost significantly more, funded by the provincial program.
I use a complex wheelchair with a power assist motor for Hypermobile EDS (hEDS), POTS, (orthostatic intolerance) Fall Risk (poor proprioception), Degenerative disc disease, fibromyalgia, and chronic pain and fatigue symptoms for all those conditions. I started using my chair in 2019. August will be 4 years. It's made all the difference in the world.
Having a chair has made my life with ME so much easier, and it makes it easier for my husband too! He no longer has to worry that my wobbly self is going to fall over and hurt something vital :) Instead I'm safe in my chair, and he can push my around, and make me laugh by giving the chair some speed and saying "Nyoooom!"
Thanks for this video, I have the same issues with using a wheelchair, I have HNPP , which varies from day to day month to month, if I need to go any distance then I need my chair , or wear leg braces that hurt , but people look shocked when in town and I get out of my chair and walk , have to add I have only started to use a chair as I been battling with what will people think thing , and it’s helped seeing videos like yours explaining use of chairs , many thanks
I have recently started using a wheelchair. I have fibromyalgia and have chronic pain, numbness, nerve pain and other symptoms as well as chronic fatigue. Sometimes, I need to use the chair due to extreme pain and the fatigue. I still want a life and need it to do so. I can walk, but not unaided.
I feel this I've been debating on getting a wheelchair but I'm afraid of the stares. I'm 30 and have fibro and my legs have started becoming spasmy and dystonic and walking cause them to spasm and contort if I go a certain distance Plus im a parent to a preteen and have a fiance who is my rock. I was told I would need a walker on my bad days
Since I perform as a mermaid I've had to use a couple of borrowed wheelchairs on occasion when performing, because during that time I can't walk at all and am otherwise immobile or have to be carried (except if I'm in the water). Don't even get me started on being in a freezing cold not too accessible building for a dry event, which was a bit of a faff because I couldn't move the chair myself and the people who were trying to help me couldn't always be by my side o-o' nearly got stuck in the bloody loos... but for a pool gig I once got to be wheeled over and lowered in by this really cool poolside wheelchair/lift thing. It was wonderful and saved me a lot of bother, so it makes me really happy thinking about how brilliant it must be for those who regularly need it!
Due to a back injury, I can not stand or walk more than about ten minutes without pain. I recently purchased a power chair, Zoomer, that enables me to shop, “walk” longer distances, peruse books in the library, etc. Yes I can walk a little, but due to my advanced age, 82, I have only had positive comments from friends and family about my choice to improve my quality of life by using the chair. I am loving zooming around!
I have been diagnosed with complex regional pain syndrome as well as epilepsy and a heart condition amongst others i do use a frame inside my home and my own wheelchair when im with my carers outside my home I have carers 4 times per day and restbite twice per week for 4 hours My eyesight is also failing me My wheelchair gives me that independence but im also safe
Exactly! I had a traumatic knee injury as a child and even thought I’m not paralyzed, and am physically able to somewhat walk, I am a regular user. But when I start bending my knees on my own, people are shocked.
I have cerebral palsy and I use a power whèelchair because even though I can walk with a walker or crutches, using a power chair actually gives me more independence because I can be out longer without getting tired or hurt, I have fallen when I was out in public and have been injured, as I have lost my balance and I have a problem with depth perception.
After a prolonged period of tests and re-tests I have have recently been diagnosed with ME/CFS with Fibromyalgia which along with a couple of other medical conditions results in my having an inability to walk more than a few yards without severe pain and exhaustion. Thanks to your video and the comments of those who took the time to leave responses, I got the confidence to purchase a chair without feeling guilty about doing so (I can stand, although only for a limited time). It has been already proven invaluable to me as I was able to attend my mothers funeral without worry, and to go to a shopping centre with a friend for the first time in over a year. I would recommend anyone who has difficulties walking to watch this video, read the comments and realise that you are not alone.
Yes!!! Fibromyalgia! I can use a rollator but when a flair up hits, it comes at me hard and unexpected. That means I can be having a nice time walking around then suddenly, I can't walk anymore and practically need to lay down. I've gotten myself stranded a couple times that way. I am now researching if I should get a wheelchair and found this video to be very helpful. I just put a call into my doctor to get a referral for a wheelchair evaluation.
I had cauda equina syndrome and disc compressed spinal cord at L2. Surgery was delayed so I have zero sensation buttocks and paralysed left lower leg now and partial sensation right leg. I can not walk more than around house and only when I wear leg splints. I’m new to using the chair but it has let me be so independent again! X
i have multiple sclerosis and cant walk or stand for long periods of times because my legs feel like there going to give out and with my balance issue also. so i do use my wheelchair and i do get looks like why is she in a wheelchair if she can walk and i am 30 so they think she is young. Especially when i use my handicapped tag for my car i get alot of negative stares.
hi, fellow Nicole here! I'm 16 and use a cane often (even at home) and I use the mobility scooters at the store, but I get nervous because you have to be 18 and I'm 16... do you have any tips for where I can find a cheap, manual chair? thanks..
I also have MS and am new to using a wheelchair. I can also walk and stand for only short times. I haven't used the wheelchair out in public yet but the negative perceptions and assumptions is one thing I've also been thinking about how to handle. Right now I'm still waiting for my handicap parking placard to come in the mail so I've mostly been staying home (other than medical appts).
@@nicolebarrett777 Don't know if you're still looking for one, but if so, the first chair I used was one we borrowed from a local church, and the second one we found at a thrift store. So those might be options to try if you're still looking.
I've once heard 70% of people in a wheelchair can actually stand or walk (might have been one of Richard's videos). I have a T7 hemipareses and POTS and I can walk with my cane around the house, but no more than a few steps at a time. And it causes a lot of pain and I fall down a lot. So whenever I leave the house, I'm in a wheelchair. Still in a cheap chair that I've bought myself, since I can't get a good wheelchair funded.
I have Juvenile Arthritis, and personally use wheelchairs on occasion, mostly in situations where I would otherwise be doing a lot of walking. It helps me to not have as much joint pan and fatigue
Thanks for doing this article. I have several friends with some of the conditions mentioned who are ambulatory wheelchair users. They get asked the same sort of questions and also the obligatory online abuse from the ignorant masses. Take care 👍 ☺
I have a neighbour saying to me I've seen alot more disabled people worse than you that actually need a wheelchair. I have intrinsic nerve damage which is irripairable and 3 herniated discs. I cant walk without severe pain so need the wheelchair to get out and about. The same neighbour has also said you sit on your arse all day when others have to work. My response was I dont choose to be like this and I wish I could work but unfortunately I dont have a choice due to the extent of my injuries.
Im so sorry to hear this. People are so ignorant. Maybe she should watch my channel and learn a few things. :( Some disabilities can be more sever, however there is no "disability hierarchy" no matter what your disability, you are still disabled, and life is hard and painful. Rise above it, ignore her. xxx
@@Wheelsnoheels thank you Gem I have been rising above it I know my doctors family and friends know the severity of my disability but unfortunately there are a small few who can be very inconsiderate and not think before there saying things. Like you and I know not all disabilitys are visible and you cant visibly see how much pain a person is in. I'd love for her to watch your videos so that maybe she could learn a thing or too and think before shes so rude Xx
The stair climbing chairs!! The hybrid chairs omg I wish I could get them. I haven’t felt comfortable talking about my conditions for a long time online because people in similar situations and stuff were really vile and cruel towards me etc, I really don’t want or need that negativity.
There are a wide range of symptoms and different types of Spina Bifida. I have Myleomenengecele (no, I can’t spell it) and am a paraplegic (full time wheelchair user), but even among my type of Spina Bifida, ability differs greatly. Some people use braces, some people use braces part time and a wheelchair part time, some people use a wheelchair full time, some people can walk some without braces but need to sit down a lot, etc. A wheelchair is just a mobility device used when you can’t walk or can’t walk well in that moment. It doesn’t always mean you can’t walk ever. It also doesn’t mean a person is “a faker” no matter how they are getting around. That is a disgusting trend that I don’t really remember being around in the 80’s or 90’s, telling disabled people that they are faking their disability and/or chronic illness. Or at least it wasn’t nearly as bad back then. People are all up in everyone’s business now.
This video is great :) I will use it next time someone wonders when I use my wheelchair... I have hyper mobility syndrome (most likely Eds type 3 still in testing) so with frequent injury and surgery it can come in super handy to get around
Multiple sclerosis. I have a lesion in the T-1 area in my spinal cord caused by MS. Sometimes I can walk and sometimes I cannot, depends on the state of inflammation.
I mostly use mine due to issues managing my cardiovascular system so blackouts/faints/dizziness but one added perk is im no longer in excruciating pain which I've been in since a small child and also improves the fatigue
I have a Bone Disease [AVN] which means Avascular Nercrosis. Which is dying of the bones.I could have a Bone Biopsy to find out exactly the true name of the disease, but at this point why go through that. It wouldn't change anything. I've had 17 bone Surgeries since1990. It was caused by being on Steroids for 2yrs . I have had a Manual Wheelchair since 1992, but I still walked when the pain wasn't too bad.I now use a Power Wheelchair. In 2001, I had a left shoulder replacement & it has now broken the bones it was hooked into & it can't be fixed. And my other shoulder is also messed up.And in 2005 they fused my right foot where it wouldn't move & now the bones in it has broken apart. So that is why I have to use a Wheelchair.
There are also the wheelchairs (evac chairs) for use when people cannot use their normal chair or cannot walk , down stairs, when lifts cannot be used due to failure or lack of safety for example during a fire.
I get asked a couple of times a week on how I am in a wheelchair I use a wheelchair due to having couple of conditions and I have lost about of the mobility in my legs
I hope this video is of use to some of you, and helps raise more awareness on why people may need to use a wheelchair, even if they can walk. I know a lot of you have been asking me about this topic, and a lot of you struggle with friends and family, who find it hard to understand. Please feel free to share this video on your socials.
Gem xxx
Pronunciation... F-eye-bro-my-al-zhu .... chronic nerve pain and fatigue. ( its the disability I have) for example.... on a daily basis my nerve pain is horrendous in my legs and feet to the point when I wake up I feel like I just ran a 10k 3 days in a row making me not want to get up out of bed... having the ability to use a wheelchair allows me to function and get out more than I would if I had to walk ... I CAN walk short distances or in general I can walk.. but the problem is... once a arrive at that "short distance" location... I have no energy or Im in so much pain, I cant get BACK from that place... so now what do I do??? When Im able to use a wheelchair I am able to enjoy my life more than when I am forced to walk on legs that are in so much pain, and able-bodied person could never understand the tolerance we (as people with chronic pain) have to have against our pain in order to function everyday!
I have POTS and a musculoskeletal disorder(still waiting to see a rheumatologist) and I use a wheelchair whenever I leave my dorm. However sometimes the situation makes bringing my chair really difficult, like if my friends and I are driving to go out to eat, so I use a cane or put on a bunch of braces.
Wheelsnoheels - Gem Hubbard I have. Cerebral palsy and in my case I made the mistake of using a walker and crutches in school instead of a wheelchair but that was do to a parent being embraced or whatever or annoyed never really asked why she wanted me walking all the time but long story short. I now have to use me chair more often do to lower back pain do to school and caring my backpack but anyway keep up the good videos I enjoy your blogs with your husband and daughter I found your channel from another wheelchair users channel wheelstowalk
Wheelsnoheels - Gem Hubbard I have HSD and it is simulare to hEDS some people say that It is the same.
I can walk for 5 or 10 minutes but I can’t stand for more than a couple of minutes because of my bad back. So I decided to buy a wheelchair to give me some freedom of movements .
I assume that someone is using a chair for the same reason they might wear glasses or have a hearing aid, because they need it.
Thank you for using this analogy! Whenever someone asks me why I need my chair, I never know how to respond. I'm stealing your response! ;)
Glad I could help.
Yes
tetsubo57 I wish everyone thought like you do! I get asked why I’m in a chair occasionally and I hate it. I’m going to remember your comment from now on. Many thanks!
I had leg casts and people where hating on me for using a wheel chair, the doctor told me I had to use it
I love you videos! I've got EDS and use a chair quite a lot. Im quite a tall person and I was out shopping a while ago. A shorter lady was asking a shop assistant to reach something off the top shelf. The shop assistant couldn't reach either so she went off to find a ladder. I wheeled over and offered to get it for her and she kinda laughed. So I stood up, grabbed the item, handed it to her and wheeled off. Her face just dropped!
haha thats amazing!! :D
That's hilarious! Though I hope the lady sees this vid (or other awareness stuff about wheelchair users that are able to stand) so that the experience made sense to her! Good on you for being brave enough to do that, I don't know if I could!
Nice one :)
Just because we have a disability doesn't mean w can't also help others
I have eds too. Whoop whoop. I got my first chair very recently because of pots. Nice to meet you, fellow zebra
Just wanted to add as someone with M.E that it’s a lot lot more than just fatigue. It also causes pain, balance and co-ordination problems, dizziness, weakness and more. Also even on a “good” day using the chair can prevent post exertion malaise which is a significant increase in symptoms after any amount of activity (physical/emotional/mental). I have crutches, a manual chair and an electric chair. I can’t use my manual without assistance as I can only push myself for short distances on very flat floor. My electric gives me the independence to do things alone.
blueguitargirl15 for me i swear the orthostatic intolerance is worse than the fatigue with ME which is saying something lol
Sarah Camley My fatigue is worse or equal to OI. If it’s causing you all of issue, speak to your doctor are there things that can help.
Agreed! I often use my wheelchair to PREVENT bad days. 💜
Thinking about getting an electrical one.
Thanks for recognizing and mentioning ME/CFS as a reason to use a wheelchair! In addition to helping prevent a ‘crash’ (in severe cases expending energy-even walking-can permanently worsen our condition). Plus, a lot of us have concomitant dysautonomia/NMH/POTS, which causes rapid heart rate and/or low blood pressure while standing, so we may not physically be able to walk without fainting.
Thanks for producing this! I've had Long Covid for a year and a half with chronic fatigue and chronic leg pain that has basically made me a shut-in. I'm in the process of applying for a chair right now through my insurance with the full support of my doctor and PT. It'll be nice to have a social life again!
How is it going for you?
I Hope you were able to get a chair! I’ve been struggling with long Covid and have developed other illnesses (pots, me…) it’s wild how much one I’ll was has changed my life.. I’ve been using a cane when I have to go out for apointments but am thinking about a chair. Sorry for the ramble, sending you good wishes and all the spoons!!!
Thankfully I don't, but I have had COVID 19.
I really appreciate that you looked into something that doesn’t specifically apply to you and made a video about it. It shows you have empathy. Which is getting more and more rare these days. More proof you’re an awesome human being!!!
EDS (and comorbidities) wheelchair user here. Thank you for raising awareness and doing it so well. Love this, it reminded me of your invisible illness awareness video. You are incredibly generous and kind. 😘❤️💪🏼👌🏽
Awww thank you for your kind words. x
Fellow EDS person here!
EDSer here too!
You may want to look into getting diagnosed. It's genetic and your daughter could also have it. Mine is worse than my mom's. So it's best if you know.
Go team EDS! I'm an ambulatory wheelchair user too. My wheelchair has improved my quality of life SO much! 🙌💜
I have EDS as well. Hello fellow zebras! 🦓
This is amazing thanks for this video!!! I have EDS , POTS and Hypoglycemia which causes me to have severe Vertigo and I get seizures
People unthinkingly put so much negative baggage on wheelchairs and their users, from "ended up in a wheelchair" to "confined to". No other form of transport attracts such negative connotations.
Agreed! It's so frustrating to have people pity me when my wheelchair actually gives me so much freedom that I wouldn't have otherwise. 💜
It's so strange, no one says "you're burdened by glasses" or "glasses-bound" or anything😂
“If you can stand, why would you ever need to sit down? Now take your current leg strength and stamina, and think about one half or one quarter that. Then ask the question again.”
I nearly gave a new friend a heart attack when I stood up. We were in the cafeteria of a job training centre. I was getting a numb arse, so decided to stand up. She was looking the other way, but turned round when I was my full height (less than 5ft). She actually gasped!
i know this is an older video, but one reason im getting a wheelchair soon is because along with fibromylagia/chronic pain, i also have pretty severe plantar fasciitis that ive had since i was a toddler. for those who dont know, its a shortening of the ligament on the bottom of your foot, which causes standing and walking for extended periods of time to become very painful due to it stretching out the bottom of your foot. because ive had it for so long, it's also caused a shortening of my achilles tendons, which then has affected my ankles, knees, thighs, hips, and lower back. in short, even just standing for too long can really hurt, and it takes a long time for that soreness to wear off!!
it's taken a bit longer than i like, but im finally getting my first wheelchair soon before i start college to help me really improve my quality of life and to help me conserve my energy for better things like focusing on school and socializing rather than being utterly overwhelmed by pain and being too scared to go out on fun outtings because i worry about how badly it might end up hurting
Whoop whoop, another EDS wheelchair user here! Two years ago I only used it when I went shopping or something, but now I can not walk anymore. (Well.. I can walk 1 minute, so I can walk from chair to chair)
Another reason people might use a wheelchair: movement disorders. There are so many types of movement disorders, but they can make walking difficult, especially long distances.
Thank you for talking about this. People aren't aware of ambulatory wheelchair users and it's frustrating... it can be especially hard to read accusatory and awful comments from paralyzed wheelchair users towards wheelchair users who aren't paralyzed and can walk.
M.E/C.F.S here, some days ill walk around my local shop without much of an issue, then the next day ill be using my wheelchair (for those low spoons days!) and ill get the workers there asking "oh, what happened to you?" "what have you done now?", with a lot of effort, i can just about hold back my eye roll and laugh it off so i dont have to explain
Love this video and i love that you spread awareness
swornXjess Would you mind telling me a little about CFS?
Alexa Freier me-pedia.org/wiki/Severe_and_very_severe_ME
@@alexafreier6049 might be a little late to the party, but I have ME/CFS as well, feel free to ask anything you want to know ;-)
@@christafranken9170 what is your personal experience with it?
@@alexafreier6049 I've had it relatively easy compared to many others with the same illness. Six years ago, I had an infection caused by the citomegalo virus, which is basically pheiphers, just a different virus. That was diagnosed after three months and when the complaints didn't go away, I got the diagnosis for CFS. So I was only without a diagnosis for the first three months of illness. A diagnosis doesn't make a condition more real, but it makes it a lot easier to be taken seriously. When I first got ill, I was in my first year of my studies. After that, it was a long road of trying to find what is posible and what is not, learning to find my bounderies and a lot of boring medical stuff.
It has been six years now. For a few years I functioned at about 50% and had fatique as the only symtom. The last two to two and a half years it has slowly gotten worse. I have a lot less energy and have gotten a few extra symtoms as well. Still, I am trying to get my degree, now in a different field, more fitting to what I can and cannot do. I spend most of my time in bed, but I am able to take care of myself, to study, be it at less then half the 'normal' pace, and to have a social life.
I don't have a wheelchair, but I do occacinally rent an electric scooter when I would otherwise need to walk a lot. When going to a zoo for example, I would be able to walk, but then it would be so tiring, I would not be able to enjoy myself and it would take me weeks to get back from that. When using a scooter for the day, I would be back to my normal in a week, maybe a week and a half.
I am a part time wheelchairuser because of my multiple sclerosis. On my bad days I need it desperately and on some of the spare good days I can walk short distances. I remember so well when my neighbour watched me leaving the house without my wheelchair and later in the afternoon returning in my wheelchair. She looked stunning!! Never forget that face!
And some people only know me in my wheelchair and are ver surprised when I open the door standing and only using a cane.
Well, it depends on good and bad days as I said and it also depends on what the plans are for the day.
But when someone asks me about why I am in my wheelchair I answer: because I need it.
And nothing more. That leaves them silent.
Wishing you a great day! Gem, thanks for this wonderful video! sincerely Britta aka busdriverwithms
Shared! I'm not a wheelchair user, but my brother was during his cancer treatment. I have a few chronic illnesses so I have to prepare myself that I may need to use a wheelchair occasionally in the future should things get worse for me.
This is a great informative video!
Lol wish my mom could hear this. I’m in the process of getting my first chair (I’m super lost and super nervous) for POTS and EDS. I can walk, but often times (especially in the heat) I get lightheaded, exhausted, and I usually flare if I push myself too far, causing me to be bed bound for 1-3 days. My parents don’t get it, they think that since I can walk I should push through and try everything anyway, even though I’ve limited what I do and end up missing out on things that I can’t do anymore. I want a wheelchair for more freedom. My parents see it as me exaggerating and giving up
Dude, I hope you are doing fine. As far as parents and other loved ones goes - either they respect your choice or they don't. If they don't, it's really their issue, not yours, and you shouldn't make too much effort defending yourself. I find that there are three types when it come to attitude towards (especially closer family and friends) on wheelchair use. 1. The ones that respect it. 2. The ones that just don't get it. 3. The ones that don't respect it.
Look. I use mostly two mobility aids. Forearm crutches and a manual wheelchair. It's because of fm. Every day is different, but mostly it causes widespread pain, fatigue and because of fatigue, decreased balance. The kids would say I walk like a newborn calf or something haha. Some days I feel well enough to even run ( but I use my brain, and don't do it haha).
I got all those categories of people in my circle. It can be annoying to feel like you have to defend and explain. The trick is to not do it. Obviously you share with people worth sharing with. But those will understand and respect.
The problem your parents have is that they probably want you to be healthy, if they love you hehe which most parents do, it's probably some sort of denial. The paradox they have to get is that chair means not giving up, but actually it means starting to live life.
Anyway that's how it is for me. Without aids, I am confined to just existing on my sofa on bad days. With - I can be active again.
Dude. Make the best out of your life. And when people wonder and are curious - make sure you remember that YOU are the one who decides how much you want to share and how much of an explaination you want to give them. If you don't wanna tell them much, either serve them such an unbelievable story that they regret they asked in the first place, or you simply say - it's really not something I wanna discuss with anyone at this point. Hehe - some will respect it, some won't. But at the end of the day it's not your responsibility.
I have close family who asked me in the beginning. I asked them - do you know what fibromyalgia is? They be like: Yes. (they probably feel stupid for not knowing what it is). Then I'll explain about pain and fatigue. Worth to say I'm a bit overweight because of a decade of ignoring my physical and mental needs. Then they will start to ask stupid questions: But - what is the problem? Is it your knees? I see your knees fail when you walk - surely it has to be in your knees!
Nah... People can be annoying. And some people don't know their boundries, and some people should go home and teach themselves some common sense.
If you want your freedom - and every human should have equal oportunity to make the best they can out of their lives with the oportunities we have - that means you have to stop caring what people might think. Coz it doesn't matter. What matters is that you have your freedom :). To some it's a paradox that doesn't compute hehe, and the ones that get it, will understand that you - using the chair - is as active and have as much freedom as u can in it and it's worse without it.
Enough ranting. Hope you are doing ok! :)
From experience: don't try to convince them. When they see what a huge difference it begins to make, they'll come around. My people all did. And if they don't, then they don't. You are in control of your quality of life. You do what you must!
Make them watch this! No normal parent should want their child to suffer!
I have diaplegic cerebral palsy and I am quite capable of walking independently for short periods of time but I will get pain. You are raising awareness of an important thing as I always find people are shocked to find you can walk and assume that you never actually needed a wheelchair in the first place! Great video!
I have some weird joint and bone deformities so it makes life so much easier to just use a wheelchair due to pain. I often get judged for doing so, but I understand it is because many are consumed by these misconceptions about wheelchairs and their users.
Same.
Thank you for making this video. I have (JHS) Joint Hypermobility Syndrome along with Chronic Pain Syndrome and Chronic Fatigue Syndrome. I got my own self propelled wheelchair in May and it's given me so much freedom. I'm able to go out with my friends for longer and actually enjoy myself. Thank you for raising awareness. So many people have given me bad looks for moving my legs in my wheelchair, and questioned why I have one, and it's annoying having to explain yourself all the time.
I have R C P S for the hips down some days I'm in a wheelchair some not it just depends on wat we are doing i get funny looks off people because 1 day i might be walking but the next day in my wheelchair
I was recently diagnosed with the same three diagnoses plus a hypersensitivity disorder and this made me feel so much better about using a wheelchair
I've actually had the opposite experience. I have Spina Bifida and walk with crutches. I've been asked numerous times why i don't just use a wheelchair. One lady kept at it after her initial question that i answered that i don't use one because i am able to walk on crutches. Later, she said "I think you would do so much better in a wheelchair. It would be so much easier for you". I finally had enough and told her she is only seeing one short period of time in my life and it may look to her that i am struggling, bur I'm not. It's just how I walk. I also told her my house has steps up into it and is very small so a wheelcair wouldn't work in the house. Furthermore, walking is my exercise and keeps my strength up. I think i don't have a lot of the problems other people with SB have when they are in wheelchairs because it also helps my circularion. I said all of this, rather irritated, in fromt of about 10 people. I didn't care. She had no right to tell me what she thinks is best for me.
I have Lyme disease which causes chronic pain and fatigue, and I also have POTS which causes blood pressure issues and fainting. I'm looking into getting a wheelchair for these issues because they've gotten really severe. Your videos have been very helpful to me so thank you.
I have fibromyalgia and use a chair sometimes, my husband has diabetes, neuropathy and kidney disease which cause pain and fatigue so he uses a chair when we are out and about also.
Another reason someone may use a chair is POTS, which is a disorder that can cause sudden fainting because the blood pressure drops suddenly with certain movements. So a wheelchair can be very useful for that, I know some people with POTS need a chair that is angled back to prevent fainting in a sitting up position.
I have Spina Bifida, which I was born with, and have been a full-time wheelchair user since the age of two, but know many friends with the same disability that have varying levels of mobility from needing crutches, to electric wheelchairs, to not needing any mobility assistance at all. So glad you made this video! 👩🏻🦽❤️
The part that really irritates me is when people ask why your in a wheelchair. For me its ncl type four so its an eternal struggle to explain something so rare (im 8th worldwide)
Im hearing ya!!!! It took a while to discover it was a spinal cord injury that prevents me form walking properly. Before I had the diagnosis, it was pretty hard. Before I did have the diagnosis, I would sometimes white like (if I wasn't seeing the person again.) I would say, oh I was born like it, or its ceribal palsy. Something people kinda heard of and could be like, oh ok, and get on with their day. I actually have a video on this if you haven't seen it already? "the question we all dread." xx
oh i shall watch that video promptly im both new to this channel and new to "wheelchair'ism" so it will be handy
@@Wheelsnoheels my mother has cp and can walk for a little bit but refuses to use a mobility aid. It’s alright if she prefers that, but my issues require a wheelchair or rollator. I can’t get very far without it.
Thank you for this so helpful I have brain injury fibromyalgia and vertigo as well as chronic pain and legs refuse to work correctly .I’ve just recently started going out in a electric chair as was in for a year.some people stare at you some laugh others including my family have been fantastic .you always make me feel much better when I watch these videos thank you x
I'm so glad someone has done a video about this as I'm a wheelchair user but I can walk to a degree and everyone even some family members say I'm faking as can walk too but not far or for very long
Loved this I’m sharing it everywhere! I have eds fibromyalgia and chronic fatigue syndrome so walking far is not an option, my chair helps me to go for shopping trips and days out that just wouldn’t be an option otherwise xx
Miss Adventure Do you mind telling me a little about chronic fatigue syndrome?
Alexa Freier Like most chronic diseases (e.g., MS), It exists on spectrum, and it can have a waxing and waning quality. There are good days and bad days with it. But at its worst, it is one of the most horrendous diseases out there, and it can kill you.
me-pedia.org/wiki/Severe_and_very_severe_ME
I ha e lupus and use a wheelchair part time. People are very judgemental about it. Bottom line is I just want to enjoy a day trip with my family and this is the only way it can happen.
Lupus here too! It's been such a game changer for me using one too and I'm sorry you've dealt with that as well. I'd much rather use my wheelchair and have that family time, I understand 🫂💜
I have complex regional pain syndrome and can walk but it is so painful if I walk far so I need a chair to help me socialise or I would be stuck inside my house all the time. Thank you for this
I get fed up with medical staff thinking my wheelchair is only reason I am ill as it has made me unfit. 🙄
When the dr. put in his recommendations for me after some diagnostic testing, "wheelchair use discouraged", I could kind of see where he was coming from, but ultimately I was like "haha - not on your _life",_ since that was literally the only thing that was allowing me to get out and do a lot of the things I wanted to do, since I couldn't walk very far in certain situations (still can't), and in the almost 3 years since then, I've discovered that the condition that the testing was for is not the main cause of my limited ability to walk, though it has been a contributing factor at times, so using my chair as much as I want/need to isn't going to worsen that condition, no matter what that dr. thinks (that day was the only time I've ever seen him, and I very well might never see him again except _maybe_ in passing).
Thank you for doing this video, so many people think that if you don't "look" like you need a chair you are pretending. I have a friend who is unable to walk long distances and needs the use of a power scooter and he gets funny looks when he gets up and walks into a business.
I have really bad imposter syndrome because of this. Social anxiety makes me think every one questions why I need one lol
I’ve had mine for about 2 years and man is it awesome! I’ve had CP all my life but didn’t use a chair until two years ago. I am a part-time user I use it for a long walks with my dogs or if my family and I are in a hurry to get somewhere I know longer feel like I’m holding people up, and it definitely helps with pain I can be out and about and if I have a flair It’s there for me and I can still do my job, and be out with friends and family and not stuck at home on the couch due to my pain.
Just pulled this up as I am having such a hard time getting out of the house to use my new chair! I have EDS, and bilateral club feet that are a mess, thanks to my hypermobility, and other issues.
Even just cooking dinner leaves me at an 8/10 pain.
When I got my chair, I told my friends Mother, and she said “you’re not really going to let yourself GO into a chair, are you??”
No, I’m going to gain the chance to leave me house, to “walk” my dogs, to do something beyond walk from room, to room, in my house.
I’m still struggling internally with using it, I don’t have ramps yet, and you can just see people judging when you stand to get in the chair, or stand to yank the chair out of the van.
How do part time chair users here deal with that?
me! I have a lumbar disc impinging on my leg nerves, which is inoperable...it hurts so much to walk. Of course I can't explain that to everyone. Screw it, I don't care what people think, I want my quality of life back!
I have a similar situation (scoliosis, stenosis, sciatica). The only thing they can do is a full spinal fusion. I think that would cause more problems than it would be worth. I’m looking into getting my first chair.
Thank you for mentioning Fibromyalgia (fibro or fm)! I have that and I use a wheelchair to get outside. I'm waiting on getting my own manual wheelchair with an electric motor so I can get around better. There is also a lot of people with Fibro that doesn't need a wheelchair and can live a quite good life. I'm not good at explaining stuff, but feel free to ask me questions about Fibro (my experience with it).
Also, is it possible that you can have voiceover when you have text on the screen you don't say so that the blind people can know it is there? It would also be awesome if you could add subtitles that are no auto generated from TH-cam. Just some tips :D
its 3 years later but i have joint hypermobility and maybe fibro (waiting for the diagnosis) and I'm thinking about getting a wheelchair for days out and bad days but aren't fully sure if it'll be helpful. What's you experience with a wheelchair now? does it help with the tiredness, does it make your shoulders worse with self-propelling? Trying to figure out if a wheelchair is good for me or not before seeing my GP to ask.
Hi how are you, I have fibro too, and was wondering what chair to get, I realize I don't need a £2000 one, thanks
Thank you so much for making this video. I have POTS and have only recently started using mobility aids, though I should’ve done so years ago. The stress of being confronted is real and always on my mind. I hope everyone sees this video.
Thank you for this video and to all the commenters here. Made me feel a bit better about this subject.
I was looking into getting a manual chair and for whatever reason, felt almost "ashamed" because I can still walk sometimes so society makes me feel like it's wrong or something.
7:47 You totally nailed cerebral palsy. There is a variety of symptoms tho. Some of us can walk others don't. I prefer being in my chair as it's easier in my everyday life.
I USE A WHEELCHAIR FOR TRANPORTATION BECAUSE I HAVE LOST ABOUUT HALF OF THE RIGHT SIDE OF MY LOWER BODY DO TO WHEN I WAS WAS 13 I WAS HIT BY A CAR. : ( BUT I SURVIVED SO DO NOT FEEL TO BAD. I ONLY LOST HALF OF MY LOWER RIGHT LEG AND I AM SO PROUD OF HOW I AM NOT THAT UPSET ABOUT IT I AM JUST READY FOR WHAT WILL COME UP NEXT.
Maxi buggies: a larger version of the kind of buggy toddlers use that are for disabled kids who are too big for a normal buggy but still have the same needs.
Attendant pushed chairs: all 4 wheels are small as they are not intended to be self propelled at all (very frustrating to use even if you can’t self propels as it takes away the ability to even adjust slightly where you have been parked).
I love how much awareness this video has brought and will bring, I have Hypermobile type Ehlers-Danlos Syndrome which also caused me to have Osteoarthritis and scoliosis but I also have a condition called Postural Orthostatic Tachycardia Syndrome (or p.o.t.s. for short) and if I walk or stand for longer than roughly 10-15 minutes then I get super dizzy and lightheaded and can pass out. So because of that I use a wheelchair, I'm an ambulatory wheelchair user and the fact that so many people look at me weird or tell me I'm faking my illness because I can still walk but I use a wheelchair not only makes me upset but also makes so difficult when I try to explain why I am using a wheelchair instead of walking and some people are great and after I explain they sort of understand but others think I am just lying or making excuses or they don't even let me explain, and its so difficult feeling like I have to explain myself every time I go out in public if I stand to reach something on a taller shelf in a store or what not. I really hope this video helps people who don't understand and jump to conclusions, get a better understanding of why people who are still able to walk need to use wheelchairs and that they actually take this information to heart because the world would be so much better for it if they did.
I have Osteogenesis Imperfecta (OI), a brittle bone disease. I broke and fractured dozens of times my limbs when I was younger. Even though I'm mobile enough to walk somewhat a manual chair makes me able to get around easily. There are varying degrees of severity with OI, and others I know with the condition use a chair to different extents for different reasons.
Can't tell you how many times strangers have seen me stand or transfer and asked "why i'm in that thing." Thanks for making this awesome video!
Thank you so much for this video and clarifying this. I am barely able to walk anymore but my friends and family think I'm "giving up" if I decide to get a wheelchair which I think is just plain unfair. I just want to be able to reconnect with my social life and be able to get outside which I cannot do like this. So thank you for this!
i couldn’t help but get somewhat excited when you mentioned EDS, it’s little known and when people do know about it they don’t always know the extent. While right now i don’t use a wheelchair as often as i used to, EDS has permanently taken the ability for me to eat or use my bladder, it’s always nice to hear EDS being mentioned 😊
Thank you for putting your content out there. I suffer from a number of conditions that affect my mobility and cause pain and fatigue. Getting about on crutches or my knees has become more and more unbearable over the past 7years. To the point I have stopped going out anywhere unless it's absolutely necessary.
I was so afraid to get a wheelchair, because I felt like some kind of fraud that I could struggle without one. But I realise doing so is causing me more harm. So I have just recently got a NHS wheelchair, and am learning to use it in my home. I am really struggling however to go out and be seen! I never thought peoples perceptions would be such a massive worry for me.
I will be going out tonight, just to get used to using it outdoors, getting up and down kerbs etc. Hopefully it will give me the confidence to go out for a few hours and face my fears. It's hopefully going to be a big help for me to get some sort of life back, get out more and hopefully socialise more again.
Thank you so much! Walking and standing more than a short distance is incredibly hard for me, due to lupus (extreme fatigue) and scoliosis. We have recently made the decision that I would benefit from a chair, and I've been incredibly nervous about the reactions I'll receive. :/
I have EDS and many associated co-morbidities. I wouldn't have the same quality of life without my Aero Z and Smart Drive. Falling and breaking my wrist in 2 places due to a hip dislocation was the final straw for myself and my doctors.
Very inspiring I have two cousins with cp (cerebral palsy ) both quadriplegic but different ends of the scale. It helps to raise awareness and I think it’s great so thank you x
My Boyfriend is using a wheelchair for long distances. He is able to walk but not for long. He has multiple sclerosis and had a problem with his sence of balance that never healed (sry for the bad English 😂 I am from Germany). So when he walks it's like he is drunk on a board with high motion of the sea and his brain tries to balance that and that exhaust him a lot and he needs a break after just 20 meters and he is walking really slowly cause he needs to have safe steps. He is also using a walking stick and a walking frame. But for long distances the wheelchair is the best. It is a manual wheelchair with electric supports in the wheels (no joystick) as he started using the wheelchair this year, many people who know him also asked why he is using it. It makes life easier for him. He can now go on a "walk" in the Zoo and Theme parks etc :) this is so nice, and we both need to learn how to use it. I need to learn that I can't just grab the wheelchair and push him etc. But it's leaning by doing.
Thank goodness for this video. I have just got an electric wheelchair, I can walk but struggle after a short time due to back and joint disorders. I get asked the same thing, if I can walk, why use a chair.
Im glad you found the video helpful. xx
Thank you for this important, informative video, and a special thanks to you for mentioning ME/CFS and fibromyalgia. These are complex, chronic diseases that haven’t yet gained enough ‘street cred’ to be wholly accepted by many in the medical community, yet 25% of people with ME are housebound or bedbound, and there are as many wheelchair users with ME as with MS. Incidentally, MS was dismissed as ‘hysterical paralysis’ before MRI technology came on the scene and allowed doctors to see the demyelinating brain lesions present in MS .
I’m sure the current attitude towards ME and fibromyalgia will change once there is a simple mainstream test showing pathology, but that would require investment in research. Research funding for these incredibly disabling diseases is paltry compared to the disease burden, but hopefully that will change soon.
I have fibromyalgia. I used to choose to walk quite often but after a severe knee injury, it's become too painful collectively for me to continue doing so. I'm quite happy with my wheelchair but because I can stand, a lot of people think I'm faking it or am just too lazy to walk. It's incredibly frustrating, so thank you for spreading awareness on this issue!
yes! im so nervous about using a wheelchair bc i feel like im not "disabled enough" or something. even though my bad days are rare, they can be bad enough that even turning my head is extremely dizzying.
Being hyper mobile with osteoarthritis and fibromyalgia can make life very tough so chair is Essential thanks for the great vids I recently developed functinal neurological disorder now Im off my legs withh loo issues too hoping to improve Chin up being positive so important cheers for the lighthearted support great job
I'm a wheelchair user, and for awhile my family didn't believe I needed a wheelchair since I'm not paralyzed. They learned real quick why when they saw me transfer from the wheelchair to a regular chair. They saw my legs just don't move for me anymore. Now the eyes have quit rolling so loud. lol
Also Hybrid Wheelchair, Which is what I use with my CFS/ME. its a Manual wheelchair or Electric wheelchair depending on what setting I set it. you do need to set up the wheels and cant do both at the same time as that is dangerous but lets say I'm on a hill and go up using the electric part ,when I'm up I can(while still sitting) push the motor up and let the wheels go free and then I'm in Manual mode :). However It's a very heavy one so I can't really manually push myself but when the motor runs out , people can push me or I can walk behind it while still having some extra support. It's also Thanks to you for finally taking this step to be comfortable enough to get my wheelchair and it's changing my life, I can finally go out again and live my best life as a 23
Hi Just Found your channel and like you I have had a lot of spinal issues since 2006, I have just been through another operation in January 2022. since then I have been using my wheelchair more as I find it the best way to get around, I still use my walking stick to walk too just not far as I still get so tired. your channel is great for me as its made me relilaze that im not alone in what im going through. im lucky too have a great wife and parents to keep me sane as someday I really do struggle, but seeing you really helped so thanks,
Thank you for your videos! I’ve had severe scoliosis, and other spinal conditions for over 20 years. I am now at the point that I cannot walk or stand for more than 5 minutes (15 if I take steroids). I am researching electric wheelchairs and scooters so I can once again travel, go to museums, etc. I feel guilty and often think I don’t deserve a chair. I appreciate hearing from ambulatory wheelchair users.
Hello from Ashburton, New Zealand, I have electric wheelchair my diagnosis is Functional neurological disorder, F.N.D, started with hyper mobility at age 10 Fibromyalgia age 18, miagranes both of my children have EDS type 2 diagnosis with fibromyalgia an migraines. An one is on crutches still mobile but steady decline while our other has scoliosis as well. i use a chair to manage my fatigue and helps with my f.n.d pain. I found this channel looking for other positive people who love life but it's a challenge.
Hi you mentioned cerebral palsy (cp) which I have. Cp is a result from a brain injury when a person is under 2 year of age. It effects the communication between your muscles and your brain which leads to spams, weekness, and in bad cases being paralyzed. I am lucky enough to be able to walk with the help of crutches but on bad or long days I use a scooter. I hope this helps. :)
As a younger Fibromyalgia sufferer with a partner who has Complex Regional Pain Syndrome - chairs will most likely become a way of our lives as we get more and more active with professional careers. I think a lot of the problem is - a lot of people who aren't disabled see chairs as something that is DISABLING rather than the perspective that chairs are actually ENABLING the users to be more active and do things that they might otherwise consistently could not.
That's certainly my perspective on it anyway, I aim to get one when I move to a more disabled friendly area (currently I cannot use a chair on country roads) as it will allow me to do more and be around more for the things I find important. I'd be able to give myself more control and predictability than my otherwise shoddy body provides!
Please feel free to add anything/chat to me about your experience - I'm open to communicating about Fibro :) I do a lot on my social media!
I think able bodied people see wheelchairs as disabling, because if you can walk and run and do stairs just fine, a wheelchair would make things harder. They don’t necessarily understand how exhausting or difficult walking can be
I have EDS and POTS (postural orthostatic tachycardia syndrome) which is a heart condition that makes me very prone to fainting. Last year I almost died from unexplained nausea and vomiting and found my chronic fatigue to be too much. I got a wheelchair from Amazon since my body was NOT in any shape to even go through the wheelchair assessment. I still have it and use it all the time! It’s given me my life back and I am forever grateful for the people who bought it for me. I’m not paralyzed but I still need my wheelchair! ❤
I basically have severe ME/CFS and fibromyalgia. I am not able to stand or walk easily, so I use a wheelchair most of the time except at home (my home is not wheelchair accessible). It has allowed me to do like 4 errands instead of 2 errands and being too exhausted/in pain to continue my day. :)
Gem-Fibromyalgia is a hard word to pronounce! Fy-bro-my-Al-juh. :)
ButterflyNerd007 Would you mind telling me a little about CFS?
Alexa, of course! There is so much to explain, and it effects every patient differently. I look at it as a spectrum: some people are able to work full time, but have to sleep as soon as they get home to get up for work the next day; Some are bed-bound with no light and no sound because it can be so excrutiating. Here is a link that gives a really good overview:
www.meassociation.org.uk/about/what-is-mecfs/
CFS usually happens after an illness, but that illness can be serious or very common. I noticed having to rest a lot more and some muscular pain in Feb of 2017 after having walking pneumonia for about 6-12 weeks. But it was the end of January this year that I began having extreme muscular pain; I thought it was fibro until recently when I learned about ME. Walking is extremely difficult and painful for me, I nearly pass out from standing even slowly; I have severe brain fog and memory loss (I used to remember everything-now my husband and I have important memberable conversations and I can't even recall them). I have begun losing my hearing so badly that I recently went to a concert of a band I'm familiar with, and couldn't make out the words of the singer. I was in the very front row. I use a wheelchair to get around most of the time now, and I have a service animal specifically for mobility whereas before I only used one for PTSD. The biggest thing with CFS is that we have post-exertion fatigue. I used to be on my feet 8am-midnight. Now I can hardly go to the grocery store and run an errand without having to rest the remainder of the day or even the next day.
There are a lot of people who are better off than me, but there are even more that are worse. I hope this info helps! There is also a tedtalk on TH-cam about it that is very helpful.
th-cam.com/video/Fb3yp4uJhq0/w-d-xo.html
Here is the video I was talking about. This was my first exposure to info on ME. Most doctors don't know about ME and others don't think the patient is being truthful. This video is a good starting point for anyone wanting more info on ME from someone who actually has it.
ButterflyNerd007 Thank you. This is very helpful. My friend has this and I just wanted to understand a little bit better.
You're welcome! The best thing you can do is understanding of her condition. She may have to cancel plans, but it's not her fault.
mm, I'm an ambulatory wheelchair user, was advised to get one by my neurologist, particularly for long distances. I have a condition called progressive spastic paraparesis, as well as bilateral cavovarus deformities in both feet. I can walk with crutches, but this is becoming harder for me. The main elements of spastic paraparesis are stiffness and pain (I've made some videos about my journey, took me over 5 years to get diagnosed). The treatment is, in the first instance, medication - Baclofen is often used, so are certain benzodiazepines, particularly Clonazopam. The first neurologist I saw thought I might have dopa responsive dystonia, which is treated with L-dopa, which is also used in the treatment of Parkinsons, so I tried that first. I had a bad reaction to all of these medications, so the next step was neuro-physiotherapy, which unfortunately hasnt worked for me because of the deformities I have in my feet. I am currently waiting to have botox injections as part of neuro rehabilitation and, if that doesnt work, I may have to have surgery on my feet and then possibly have neuro-physiotherapy to help with the muscles. I'm leaving the link to the playlist of videos Ive done about the medical journey Ive been on (5 MRIs, a bit of electrical testing and several genetic blood tests) here if thats ok and if you want to check it out. Take care. :o)
th-cam.com/play/PLjEwJi_FcfuZa_riPHfKi0EL8IsgAdZSr.html
I have fibromyalgia and hypermobility, I mostly use crutches but use my chair for bad pain days and longer journeys because I get a lot of joint pain that makes it hard to walk :)
I use a wheelchair myself and I can walk I have several chronic illnesses and fibromyalgia is one and COPD I get dizzy and nasuas it's hard for me to stand and walk for long and people tend to think I'm a fraud it's upsetting but I hope people learn that the wheelchair can be used for many reasons
I also have a manual reclining wheelchair with elevating legrests which is what I used a lot when my ME/CFS (and POTS) was more severe and before I had my rigid manual wheelchair (which I’m hopefully getting a SmartDrive for soon). The downside is its weight and size but it’s great for when I need to be more reclined / lying down. It’s a lifesaver during ER trips and 6+++ hour waits.
Amy McRae I didn't think about that while getting my evaluation for my wheelchair... Perhaps I should have made mention of that =\
Chantel York I started out my evaluation with that but no single chair was ever going to meet all of my needs and I was able to get a reclining manual wheelchair for ~$400 (mayyybe $400-500?) Canadian, I think, on eBay through the US and getting my manual rigid ultralight chair, which cost significantly more, funded by the provincial program.
Thank you for this video, awareness is so important
I use a complex wheelchair with a power assist motor for Hypermobile EDS (hEDS), POTS, (orthostatic intolerance) Fall Risk (poor proprioception), Degenerative disc disease, fibromyalgia, and chronic pain and fatigue symptoms for all those conditions. I started using my chair in 2019. August will be 4 years. It's made all the difference in the world.
Having a chair has made my life with ME so much easier, and it makes it easier for my husband too! He no longer has to worry that my wobbly self is going to fall over and hurt something vital :) Instead I'm safe in my chair, and he can push my around, and make me laugh by giving the chair some speed and saying "Nyoooom!"
Thanks for this video, I have the same issues with using a wheelchair, I have HNPP , which varies from day to day month to month, if I need to go any distance then I need my chair , or wear leg braces that hurt , but people look shocked when in town and I get out of my chair and walk , have to add I have only started to use a chair as I been battling with what will people think thing , and it’s helped seeing videos like yours explaining use of chairs , many thanks
I have recently started using a wheelchair. I have fibromyalgia and have chronic pain, numbness, nerve pain and other symptoms as well as chronic fatigue. Sometimes, I need to use the chair due to extreme pain and the fatigue. I still want a life and need it to do so. I can walk, but not unaided.
I feel this I've been debating on getting a wheelchair but I'm afraid of the stares. I'm 30 and have fibro and my legs have started becoming spasmy and dystonic and walking cause them to spasm and contort if I go a certain distance
Plus im a parent to a preteen and have a fiance who is my rock. I was told I would need a walker on my bad days
Since I perform as a mermaid I've had to use a couple of borrowed wheelchairs on occasion when performing, because during that time I can't walk at all and am otherwise immobile or have to be carried (except if I'm in the water). Don't even get me started on being in a freezing cold not too accessible building for a dry event, which was a bit of a faff because I couldn't move the chair myself and the people who were trying to help me couldn't always be by my side o-o' nearly got stuck in the bloody loos... but for a pool gig I once got to be wheeled over and lowered in by this really cool poolside wheelchair/lift thing. It was wonderful and saved me a lot of bother, so it makes me really happy thinking about how brilliant it must be for those who regularly need it!
Due to a back injury, I can not stand or walk more than about ten minutes without pain. I recently purchased a power chair, Zoomer, that enables me to shop, “walk” longer distances, peruse books in the library, etc. Yes I can walk a little, but due to my advanced age, 82, I have only had positive comments from friends and family about my choice to improve my quality of life by using the chair. I am loving zooming around!
I have been diagnosed with complex regional pain syndrome as well as epilepsy and a heart condition amongst others i do use a frame inside my home and my own wheelchair when im with my carers outside my home
I have carers 4 times per day and restbite twice per week for 4 hours
My eyesight is also failing me
My wheelchair gives me that independence but im also safe
Exactly! I had a traumatic knee injury as a child and even thought I’m not paralyzed, and am physically able to somewhat walk, I am a regular user. But when I start bending my knees on my own, people are shocked.
I have cerebral palsy and I use a power whèelchair because even though I can walk with a walker or crutches, using a power chair actually gives me more independence because I can be out longer without getting tired or hurt, I have fallen when I was out in public and have been injured, as I have lost my balance and I have a problem with depth perception.
After a prolonged period of tests and re-tests I have have recently been diagnosed with ME/CFS with Fibromyalgia which along with a couple of other medical conditions results in my having an inability to walk more than a few yards without severe pain and exhaustion. Thanks to your video and the comments of those who took the time to leave responses, I got the confidence to purchase a chair without feeling guilty about doing so (I can stand, although only for a limited time). It has been already proven invaluable to me as I was able to attend my mothers funeral without worry, and to go to a shopping centre with a friend for the first time in over a year. I would recommend anyone who has difficulties walking to watch this video, read the comments and realise that you are not alone.
Yes!!! Fibromyalgia!
I can use a rollator but when a flair up hits, it comes at me hard and unexpected. That means I can be having a nice time walking around then suddenly, I can't walk anymore and practically need to lay down. I've gotten myself stranded a couple times that way. I am now researching if I should get a wheelchair and found this video to be very helpful. I just put a call into my doctor to get a referral for a wheelchair evaluation.
I had cauda equina syndrome and disc compressed spinal cord at L2. Surgery was delayed so I have zero sensation buttocks and paralysed left lower leg now and partial sensation right leg. I can not walk more than around house and only when I wear leg splints. I’m new to using the chair but it has let me be so independent again! X
i have multiple sclerosis and cant walk or stand for long periods of times because my legs feel like there going to give out and with my balance issue also. so i do use my wheelchair and i do get looks like why is she in a wheelchair if she can walk and i am 30 so they think she is young. Especially when i use my handicapped tag for my car i get alot of negative stares.
hi, fellow Nicole here! I'm 16 and use a cane often (even at home) and I use the mobility scooters at the store, but I get nervous because you have to be 18 and I'm 16... do you have any tips for where I can find a cheap, manual chair? thanks..
I also have MS and am new to using a wheelchair. I can also walk and stand for only short times. I haven't used the wheelchair out in public yet but the negative perceptions and assumptions is one thing I've also been thinking about how to handle. Right now I'm still waiting for my handicap parking placard to come in the mail so I've mostly been staying home (other than medical appts).
@@nicolebarrett777 Don't know if you're still looking for one, but if so, the first chair I used was one we borrowed from a local church, and the second one we found at a thrift store. So those might be options to try if you're still looking.
it's hard to blv people dont understand thst there r people with pain/mobility issues that aren't paralyzed, who r they to judge
I've once heard 70% of people in a wheelchair can actually stand or walk (might have been one of Richard's videos). I have a T7 hemipareses and POTS and I can walk with my cane around the house, but no more than a few steps at a time. And it causes a lot of pain and I fall down a lot. So whenever I leave the house, I'm in a wheelchair. Still in a cheap chair that I've bought myself, since I can't get a good wheelchair funded.
I have Juvenile Arthritis, and personally use wheelchairs on occasion, mostly in situations where I would otherwise be doing a lot of walking. It helps me to not have as much joint pan and fatigue
Thanks for doing this article. I have several friends with some of the conditions mentioned who are ambulatory wheelchair users. They get asked the same sort of questions and also the obligatory online abuse from the ignorant masses. Take care 👍 ☺
I have a neighbour saying to me I've seen alot more disabled people worse than you that actually need a wheelchair. I have intrinsic nerve damage which is irripairable and 3 herniated discs. I cant walk without severe pain so need the wheelchair to get out and about. The same neighbour has also said you sit on your arse all day when others have to work. My response was I dont choose to be like this and I wish I could work but unfortunately I dont have a choice due to the extent of my injuries.
Im so sorry to hear this. People are so ignorant. Maybe she should watch my channel and learn a few things. :(
Some disabilities can be more sever, however there is no "disability hierarchy" no matter what your disability, you are still disabled, and life is hard and painful. Rise above it, ignore her. xxx
@@Wheelsnoheels thank you Gem I have been rising above it I know my doctors family and friends know the severity of my disability but unfortunately there are a small few who can be very inconsiderate and not think before there saying things. Like you and I know not all disabilitys are visible and you cant visibly see how much pain a person is in. I'd love for her to watch your videos so that maybe she could learn a thing or too and think before shes so rude Xx
The stair climbing chairs!! The hybrid chairs omg I wish I could get them. I haven’t felt comfortable talking about my conditions for a long time online because people in similar situations and stuff were really vile and cruel towards me etc, I really don’t want or need that negativity.
There are a wide range of symptoms and different types of Spina Bifida. I have Myleomenengecele (no, I can’t spell it) and am a paraplegic (full time wheelchair user), but even among my type of Spina Bifida, ability differs greatly. Some people use braces, some people use braces part time and a wheelchair part time, some people use a wheelchair full time, some people can walk some without braces but need to sit down a lot, etc. A wheelchair is just a mobility device used when you can’t walk or can’t walk well in that moment. It doesn’t always mean you can’t walk ever. It also doesn’t mean a person is “a faker” no matter how they are getting around. That is a disgusting trend that I don’t really remember being around in the 80’s or 90’s, telling disabled people that they are faking their disability and/or chronic illness. Or at least it wasn’t nearly as bad back then. People are all up in everyone’s business now.
This video is great :) I will use it next time someone wonders when I use my wheelchair... I have hyper mobility syndrome (most likely Eds type 3 still in testing) so with frequent injury and surgery it can come in super handy to get around
Multiple sclerosis. I have a lesion in the T-1 area in my spinal cord caused by MS. Sometimes I can walk and sometimes I cannot, depends on the state of inflammation.
CONGRATULATIONS ON 20k SUBS!! I’m the 20,000th subscriber!!
oh thank you so much!!!! xxx
I mostly use mine due to issues managing my cardiovascular system so blackouts/faints/dizziness but one added perk is im no longer in excruciating pain which I've been in since a small child and also improves the fatigue
I have a Bone Disease [AVN] which means Avascular Nercrosis. Which is dying of the bones.I could have a Bone Biopsy to find out exactly the true name of the disease, but at this point why go through that. It wouldn't change anything. I've had 17 bone Surgeries since1990. It was caused by being on Steroids for 2yrs . I have had a Manual Wheelchair since 1992, but I still walked when the pain wasn't too bad.I now use a Power Wheelchair. In 2001, I had a left shoulder replacement & it has now broken the bones it was hooked into & it can't be fixed. And my other shoulder is also messed up.And in 2005 they fused my right foot where it wouldn't move & now the bones in it has broken apart. So that is why I have to use a Wheelchair.
I had a broken back and I was in a wheelchair for 3 months and I was told I didn't need it
There are also the wheelchairs (evac chairs) for use when people cannot use their normal chair or cannot walk , down stairs, when lifts cannot be used due to failure or lack of safety for example during a fire.
Thank you! My chronic fatigue has had me in bed most days. I wanna get out more.
I get asked a couple of times a week on how I am in a wheelchair I use a wheelchair due to having couple of conditions and I have lost about of the mobility in my legs
Psoriatic Arthritis user here. Grateful for my chair!