I’m also an ambulatory wheelchair user. It changed my life as I was “disabling” myself by avoiding situations and occasions I couldn’t manage, and my chair ENABLES me. You have done a great job at explaining what it’s like xxx
I came across this channel by chance and I’m now thinking the same thing. I’m avoiding so much of life because it makes me so exhausted. What if I had energy for experiencing more by getting a wheelchair? I’ve rented one before going to an amusement park and it helped so much.
@@reneets5729 Renee? It changed my life. If you feel you are saying no to opportunities then it is your lack of equipment ( I call my chairs my “tools “. I have a couple - electric and manual) that is holding you back. I believe that was me ‘disabling’ myself, and why? In case some arse calls me a fake when I step out? My youngest son makes a great joke of it…. If we are in a supermarket and I have to step up from my chair to get a high item he says loudly “it’s a miracle!!” Before collapsing into a fit of giggles! ENABLE yourself by getting the tools you need to live the life you had before (almost) xxx
Two of the biggest advantages of having a wheelchair are 1- Being able to be spontaneous while out of the house with friends and 2-not having to turn down invitations because you don’t think you’ll be able to walk far enough and still have the energy to enjoy the outing. Everyone just needs to think of it as a tool to help with difficulties. I really liked the comparisons with reading glasses and umbrellas 🤓 🌂 x
It's wild how ableist and misinformed so many people are about mobility aids and disabled folks. Lately, I've considered getting a mobility aid bc I'm so done with feeling like I'm dying and/or passing out whenever I go out and walk too far/stand too long (POTS, hEDS, narcolepsy), and having to say no to things I really wanna do bc it involves too much walking. I'm young, I want to _live_ and experience things, not be stuck at home. :( I know from awful experience what my body can and can't tolerate, even a few blocks is too many, and my body needs some sort of mobility aid and I need to stop denying it one regardless of anybody else's opinion. I appreciate this video and your channel and transparency about your own experiences. ♥
i just searched "mobility aid for fatigue" and found your videos. my gf has long covid, which gives them a lot of fatigue and muscle/joint pain. we're both trying desperately to adapt, and trying to deal with this shrinking of what's possible. the idea of using a wheelchair for days out, even if it's just when i or a friend can be there to push, is an incredible thought. and you just made it sound really possible. thank you so much for making these videos.
Ambulatory wheelchair and crutches user here. It took me a long time to accept that im disabled and it was actually my husbands idea to get a wheelchair so i can actually leave the house as i was housebound. I felt so embarrassed to use it at first, scared that someone was going to see me stand up from the car to get into it or vice versa and shout at me that i was "faking it". Its been 3 years and the feelings are going away gradually. For me it's meant i can go to places that i wouldnt have before. An example is that we lost a beloved family member just before Christmas and i was able to goto their funeral knowing that firstly i would get a seat (because so many people went that most didn't get a seat and had to stand for the entire service) and also if we had to wait around outside for any reason (talking to family afterwards etc) then i would be able to sit in my wheelchair during this and join in the conversation instead of having to go and wait in the car for my husband to finish talking etc. I've also been able to go to shops and such so no more being housebound and i also dont need to worry about getting unwell in public and fainting or falling. For me its as much about my safety as it is giving me back some freedom, I have POTS, fibro and CFS and my wheelchair has improved my life. If you're struggling and its impacting your life consider getting one. Despite my worries that someone is going to yell at me for being able to walk a few steps from my car to the chair, its thankfully never happened.
This is the reason I'm considering a cane instead the crutches I use when I go to a wheelchair. Some time I used wheelchair with my armpit crutch but it is uncomfortable to keep it, but without nothing more when people look at us and we can stand it's embarrassing. For that reason I think a cane would be good and also a kind of help when I leave the wheelchar for a while.
Regarding not being disabled enough to use mobility aids. This view was forced on me by health professionals who refused to listen to me say I need help walking, they didn't care I was housebound. I feel cfs is not taken seriously and we are left to find our own way to live with our illness. Great video I agree with all your points. My family and partner also gaslight me saying I don't need it.
I had similar stuff with doctors who kept insisting that if I used a mobility aid I'd just get weaker and weaker so instead I just became homebound since I couldn't walk without something. You deserve to use whatever helps you have more freedom and move more easily!
I'm an ambulatory wheelchair user, and it's sad how many times I'm called lazy because I don't use my chair a lot in my house. There are two reasons for this: my house isn't set up for a wheelchair, and secondly, it's referred to as wall walking.
Halloween, and going to Christmas light shows are too painful for me so i cant stay very long. Many times my mom would take me home because i would fall down and start crying and writhing on the dirty dirty ground. So im currently researching mobility aids so i can finally do what i love without the pain. This video has indeed helped.
I needed to see this today! I also have ME/CFS combined with long-covid which impacts my breathing and causes fainting episodes. My world is getting smaller because I'm struggling to take the step of incorporating a wheelchair into my life, as a tool of freedom. But I'm getting there! I remember how easily I understood taking my grandma out for the day with her wheelchair, sometimes she would push it and walk and then she would get tired and we would push her in it. But on very uneven ground the discomfort of the wheelchair was worse than walking so she would get out of it again. We have a lovely photo of her pushing her wheelchair round Karnak temple in Egypt, a trip she wouldn't have been able to do without the chair ♿. I need to worry less about what other people think and afford myself the same flexibility and understanding I've given to others 🥰
I have been in a wheelchair everytiime I leave the house since 2014 due to ME/Fibromyalgia being in pain and suffering fatigue with lack of stamina and strength and sleep daily is no joke. I too initially had resistance from my GP about going into a wheelchair. - she said my legs would weaken through lack of use - I said they were weak and in pain anyway that was why I was asking not because they were the latest fashion trend! Eventually an OT recommended the use of a wheelchair to my GP. Very recently I moved house and bought a stairlift too. I will be 60 next b/day but never feel too young/too anything to ask for help
I have ME/CFS too and have also been struggeling a bit with starting to use a wheelchair. Because I can walk, just not very far. I mostly stay home because of it.
I am an ambulatory wheelchair ♿️ user my self i had some one came running up to me and said that i was cured all because i stood up to get something from a shelf once, and i did not want tackle her so i just smiled but it is so much better for me using my wheelchair makes my life easier than trying to walk as walking causes me pain and fatigue
Thank you for being a voice for ambulatory wheelchair users! (especially online) ❤ The benefits, practicalities and limitations are shared by myself and many others, I'm sure. Thank you 😍
i have really needed a video like this ! i actually had severe anxiety the first time i went out in the wheelchair and one of the shops had steps . hubby was like just get out of the wheelchair . the overwhelming fear of being judged i couldn’t cope with it . although i now still have anxiety i don’t look at anyone’s faces as it’s my business not there’s . thank you for your videos !!! you don’t know how much they are helping people ❤
I really appreciate this video. I have hEDS and orthostatic hypotension, and I have been considering getting a wheelchair but I definitely get the feelings of being "not disabled enough." I'm very lucky in that I am still pretty physically fit (minus the actual health conditions obviously) and I work a full time retail job and am sometimes able to walk or hike for miles, but every once in a while I'm just so exhausted or all the pain catches up with me at once, and it's hard to even get out of bed. It feels like I'm "not qualified" for a wheelchair, even though I'd never say that about anyone else, and I think I've just convinced myself that, because I'm still able to move through the pain, I don't deserve help. It's really nice to hear that other people feel the same way and it's not just in my head 😅
Before getting a wheelchair I definitely thought getting one would be giving into the illness. I recently read a saying on having CFS and still trying to live life as best you can,but still having hope that you will heal. The saying called it realistic hope, or acceptance with a fighting spirit. I thought that was a great way to put it. 😊 I find that I can actually shop around now that I have a wheelchair. I never realized how focused I was on walking till I didn’t have to anymore!💗
I just started using a wheelchair ambulatorily a few days ago and I created a sticker to put on my wheelchair explaining why my legs move. I made it fun to look at and read, in case a little kid comes up to me. I’m a short person with a Mohawk and I wear mostly black, and my wheelchair is covered in stickers so if people are gonna stare, I’m giving them something to look at :) You’re not faking it, don’t let people gaslight you into suffering without a wheelchair. Personalize it like I did! It bonded me to my chair honestly, and I think it’s good for the soul to take care of something that takes care of you❤ stay slaying, guys!❤
26 years into my rare disease, 17 of which, undiagnosed. I’ve run the range of physical limitations many times. I’ve atrophied from severe flares, extended hospitalizations, and even coma. I’ve had to learn to walk again or need physical therapy to regain strength. Now ALL my connective tissue’s have torn in 2 shoulders & 1 hip, leaving just wheelchair use. But… I can still stand on 1 leg if I hold onto something. Oh the dirty looks I got when I DARED stand at the last show I went to. Heaven forbid I wanted to see the stage better. Such ignorance in the world. I don’t let it phase me anymore. It’s my struggle to fight or enjoy however I see fit. If their narrow minds can’t understand that, it’s nothing to do with me. So thanks for educating the masses!
I‘ve recently finally gotten my diagnosis for my severe back pain, muscle weakness and spasms in my legs and back that i‘ve been dealing with for over 4 years. I‘m starting to look into mobility aids because i‘ve been struggling so much recently and it‘s just been getting worse and worse that I can barely get around my house (which has a lot of stairs) I‘m 20 years old and i‘ve been fighting for years for validation and understanding from doctors which i‘m finally getting. I‘ve been starting to get scared of getting to and from work and simply doing life. Thankfully where I live is extremely accessible for wheelchairs. It‘s been a long journey, but i‘m so happy i‘m finally able to get the help I need. Your video is really helpful for me to in a way accept my future, because it is scary. So thank you for this. (I have nerve problems in my back that get worse with time and one day without surgery I will be fully paralyzed from the waist down.)
This video was super necessary! I've struggled too with not feeling "disabled enough" to use mobility aids, and society having next to no education on them adds an extra level of discomfort and sometimes even harrassment. I agree that people irl are much kinder to those with mobility aids than on the internet! That's been my experience too. Also, off topic, but your outfit is fire 🔥 👌🏼
I love my wheelchair. Without it I hadn't the opportunity to leave the house and go to the city for example. Since I use my wheelchair I was at so much places I haven't been in years. ❤
I appreciate your video. I have a medical condition that sometimes making walking dangerous because during those times I usually fall down. To stop getting harassed I take a walking cane with me (and sometimes I get hurt anyway). I fall down in parking lots, at home, anywhere. I've accidently broken items in my home, lost the diamond off my expensive engagement ring when I fell hard on the concrete, twice broken my glasses. Thank for your video, making me realizing I'm not alone.
For me, I'm a permanent ambulatory wheelchair user. Meaning I can walk or stand but only for a few minutes at a time (getting less and less as the months go by) but I have an electric wheelchair that I use daily for most of my "walking". So I can walk to the bathroom since it's close by, but I can't walk to the kitchen or living room because it's a little too far away. I can also walk down some stairs to get to my car, but them I'm in excruciating pain and have to sit and relax my spine before going anywhere. And I say permanent because every few months (for the past 2 years) my back and hips get worse. More and more pain doing anything, which is why I'm disabled and qualified for an electric wheelchair. Also because I have dwarfism and have short arms and a bad neck, arthritis, weak muscles strength and also hyper extention in my joints so I can't push myself in a manual wheelchair.
Another reason it’s nice to walk sometimes, if possible, instead of using the wheelchair is to get a bit of exercise and avoid the de-conditioning that is so common with this illness.
I'm ambulatory too. I use a chair most of the time even in house but I have privilege is I can walk around people's houses if needed as long as plenty of seating opportunities ! Lovely you have good friends who'll push you 🙂
yes I get you, not all people are permanent users, Pain, fatigue, or balance conditions (I have this{left leg shorter than right, AND I have no sense of balance-due to schizencephaly}), can use these to, and RIGHTLY SO, this is an OT capacity maintenance\mobility strategy; you can't last forever, or at least all day (you are NOT powered by the "energiser bunny"), so to conserve what capacity you do possess, you do "chair" for a while, and when needs must, you go 'normal' for as long as your conditions allow for, NO problem with that!! just takes the 'normal people' some acceptance, understanding and accommodation of your specific needs, whatever they may be. I don't use a wheelchair, but due to my Autism and the balance conditions, I do take advantage of the "courtesy seats" on trains and busses, to rest, and compose myself.
Hey Elinor, thanks for your video 👏. I have recently become an Ambulatory Wheelchair User to Dash. I have struggled for years with my mobility because like others have said I didn't feel that I was disabled enough to warrant my using a wheelchair & I didn't want to be labelled, but recently things got so bad that I now can't walk far or for long without being in extreme pain. I call my wheels 'Dash' as it helps with my acceptance & the chair doesn't feel so foreign to me. Still getting used to it, but it is opening doors that I felt were closed to me. Thanks again for sharing & best wishes to all Ambulatory Wheelchair Users, we CAN do this 👍. Christine
Thank you! Thank you for sharing. I have recently become an ambulatory wheelchair user. At 53, I developed spinal stenosis within the inner cavity of my spine. No herniations, no slipped discs. Just an aggressive form of arthritis is growing and slowly constricting my spinal cord. This means, like you, I can maneuver throughout my house with the aid of a cane unless lifting is involved, then it is safer for me to do it in the chair. When I go outside, I do use the chair, but I do have my canes to help me. My biggest problem is the folks in my hamlet. They all know how I used to be, always working in my yard, running errands, and taking the kids to functions and school events. But in the last two years, the arthritis has been so aggressive that all of a sudden, they see me around town in a chair and then getting up with my canes to do stuff. I am always asked why the chair if I can walk? I tell them, "You can walk and use your arms and hands to do things as you walk. When I walk, I need my canes and I can't use my arms and hands to carry things because I am trying to stand upright without my legs giving out. I use the chair to be able to function as normal as I can with my new disability" I still get the clicky ones that keep spreading rumors, but they don't bother me. I was offered to have surgery on my back, but there is only a 52 to 58% success rate, with only one to two years of pain-free, but I would lose the total use of my legs. So I rather have little use of my legs now than not have use of them at all. Your videos are great! I am glad I found you!
Just wanted to thank you Elinor as your vlogs really encouraged me to get a wheelchair a few weeks ago. It’s so freeing and really opens your life up. All so well put ❤
I was so terrified to start using my cane because of all the shit you see online. I did get a few too young “jokes”, mostly from family and work, but that was it. Everyone has adapted to it quickly, my friends didn’t bat an eye aside from of course being worried about my health and I never had to explain why I don’t need my cane every day. From strangers I’ve gotten nothing but positive interactions. Had an amusement park worker comment on how cool it was that it could fold when I folded it down for a kiddie coaster. An old lady at a convention mentioned how she’d tried one like mine and asked how I liked it, ended up laughing about how I also used mine backwards sometimes in the beginning (the reason that she hadn’t been using hers) and that yeah I’m sure that would make it very uncomfortable. Also ended up being corrected by my totally able bodied friend when I fucked up my wrist using it at too high of a setting (cause I like having my arms up damnit!) and man do I hate it when he’s right lol. Haven’t even had parents shush their kids, which I definitely thought would be more prevalent; in fact I made some kids laugh explaining to my baby niece that she shouldn’t put her mouth on the foot cause that’s like eating a shoe (my cane’s been her favorite toy since the day I started using it, idk why)
this really convinces me to get a wheelchair, also due to chronic fatigue possibly caused by MS. I have my cane and I'm going to ask my doctor about getting forearm crutches for more support and mobility, but ive been considering a wheelchair for a good bit ESPECIALLY since my last flare up where I literally was basically housebound while trying to get through a semester of college (wherein I missed most of my classes and finals were ROUGH). Im out of my flare now (presumably) since about the last couple weeks of school, but my fatigue and weakness are much worse, and while on vacay to see my partner I slept through a good bit of it or was unable to move from doing honestly pretty light activities. I still work on getting past the feeling like this is, like many believe, me giving up, because its NOT. So yes, if you sympathize with these things like in the video, definitely consider it. even if you work your way into it like I plan to in a way with getting crutches first!! ALSO IF YOU HAVE MEDS, T A K E T H E M *BONKS YOU ON THE NOGGIN GENTLY*
Thankyou so much for this video- I’ve been umming and ahhing getting one because I always thought I’m not disabled enough, and what will people say? But I am disabled enough I don’t go out because I’m worried I won’t be able to get back or do the thing I’m travelling to. I won’t walk my dog, I won’t go shopping , I won’t go to the doctors despite being Ill with the pots,Eds, fibro and having chest pains. I can’t wait to get my chair so I can go to the zoo again, going shopping even, going out with friends. Thankyou for making me feel valid.
4:00 This is why I'm getting a chair. The less I have to walk means the more I can walk. Thanks to PIP and all their infinite wisdom we have just lost our car and so without a chair I would lose all my independence. Add to that having a 2yr old and we definitely need to be able to leave the house xx
I'm 27 in a few months and have been chronically ill since I was 10... I've been progressively declining for the last 5yrs or so and I am now taking the leap to get a wheelchair... I always felt like I'd be seen as a fraud because I can wall or do walk sometimes or I stand up when in my chair... I desperately want to avoid conflict but at the cost of pretty much killing myself off... I'm less fun for my daughter in this state even though I thought getting a wheelchair would make me less fun... I see it as an energy preservation tool... Just need to find the right one and save up some money... Being disabled is expensive 🙈
I myself use a wheelchair,it's like you said like using when you needed.i myself use a electric wheelchair and it's great n have the mobility that everyone takes forgented.
@@ElinorBrown when using my wheelchair,I don't bother what people think.the important thing is that I'm mobile n free to do things that I need or want.
OMG 7:36 - 8:10 >>>> My thinking patterns exactly!! LOL, Guess I have some things to re-think about. Thank you for opening my mind to a different perspective Elinor!
I struggle with feeling entitled to use a wheelchair. I use them in stores and I'm always amazed at how much better I can enjoy things.. but I'm terrified of people especially coworkers being rude about it.
I used to walk beside my mobility scooter so I could walk a little bit and someone actually accused me of stealing it. I never walked with it again, and now I hate using it.
I have recently become a Wheelchair user, due to severe pain from Ankylosing Spondilitis meaning I can't walk more than very short distances now. I struggled with it but am so glad I did now, it's giving me a freedom.again to be out and about and enjoy it again. It's making such a difference to myself and wife . This is a great video, wish I'd seen it ages ago, I had really internalized the idea that people who can walk at all don't use them, so wrong.
I am wondering if I could have that, because after 3 years, the injury I had limits me quite a bit. I also can’t work certain jobs bedside it requires me to stand on my feet. It’s hard to walk those long distances with pain, but also I am in pain a lot of the time. And now it seems like it’s gotten worse
I'm looking forward to watching the rest of your videos because, at 35 years old, I am soon going to be an ambulatory wheelchair user. I have ankylosing spondylitis and psoriatic arthritis. My experience basically tracks with yours particularly in the accepting-disabilities department.
thanks for this, I'm currently using crutches full time and have just started using wheelchair when I go into supermarkets and the difference it makes is astounding but my mum still questions why I even need crutches which is what is mainly putting me off from getting a wheelchair of my own. My husband though is really supportive. It's going to take me a while to save up the money to be able to get a wheelchair so I'm just going to see how things go with my mum and that in the mean time whilst saving up.
Love this video and your outfit! The explanation with the glasses is perfect , and so is your elaboration on how to choose whether to bring along the wheelchair! I alterate between 2 canes (named Fritz and Franz), a walker (named Ferdy) and a wheelchair (named Geraldine). I mostly cannot lift Gerri onto a bus by myself but with Ferdy it has become routine and the most bus drivers here have somewhat got to know me and Ferdy's folding mechanism
Oh the accessibility! I am not disabled however i went through an acident where i broke both legs, i had to relearn how to walk and broke some teeth, when i went to the dentist to get them fixed i told them about the acident and about how i would go in a wheelchair and needed to know if they had accessibility for it, they said they did because the building had an elevator. When i get there just imagine the surprise when i see not only one but two steps to get to the dentist ofice, yeah, great accessibility. I was lucky enough that i managed to get up and down the steps holding the wall and my husbands hand, but i did get pissed off and it did hurt a bit. I have had close relationships to some wheelchair users so i was pretty aware of this dificulty but never in my life i had to go through this, it was humiliating and dehumanizing
When you spoke about walking somewhere and then feeling unwell once you finally reached your destination, I could definitely relate. And you're absolutely right. It does take the initial excitement and enjoyment out of you. Thats why I've chosen to purchase mobility aids and use them when needed. So that I can avoid those situations.
I have FND I have been using crutches but I don’t feel like I need them but my legs can be effected because I fed like most of the time I can walk but during flare ups I can’t
Thank u so much for this video. I bought my 1st transit wheelchair this week (although I have used some before). I'm so nervous about going out on bumps, slopes, public transport etc. I know it will take practice. But I'm excited to finally get outside again, even a little bit.
My family says I'm fine. Then the doctor said something was wrong. Now I need to fight it. Act normal. Eventually, they accept it. My older sister and mom are the worst.
I wear eye glasses to read and draw, no prescription I just bought them when I found out it was harder to not wear them than to wear them, I don't regret that decision at all I don't feel imprisoned when I wear my reading glasses I don't feel sad or put down or like I just gave up when I wear them im glad I'm not putting that extra strain on my eyes damaging them further I'm really grateful for that I do feel a little bad when I dont wear them because its frustrating and that's when I do feel down I do struggle and I do worry about my body, buying those glasses made everything better not worse it was not giving up super greatful they cost six dollars not six hundred thousand though that makes me feel really lucky someday we will have progressed to the point that mobility aids don't break the bank and everyone who needs one I hope will have one
I actually just got a referral for a wheelchair, I have bad chronic pain in my left leg due to work accident about 3 years ago. My foot healed wrong so now I have bad chronic pain.
I've needed to use a wheelchair for a few years but embarrassed. I own an airhawk that I got low cost from a "medical closet" by luck (and very aware of total gratitude for having it.) I am now at the quality of life but can't get it in and out of my car alone even tho it's folding and "light" (40 pounds). Just being in electric cart in the grocery store and getting up to get something pisses people off, it feels like being in a wheelchair people will feel more "ripped off?" Hard enough. Who can afford to pay for a way to get it in and out of the car?
Some help/advice, I just don’t want to make myself that vulnerable and ask for the help from friends or family, don’t get me wrong they’d be happy to help, and for me there’s this fear that if I sit in the chair I won’t get up, it terrifies me
Thank you so much. Just bought my second powered chair and can walk. I have BVH imbalance condition. After being in hospital for three months with many fractures. The time has come but coming terms is hard. The new wheelchairs folds up and goes in the boot of the taxi. I’m terrified of its first outing but must do it.
Thanks for sharing. That video just helps and encourages me. I have a wheelchair / mobility aid advise in a mobility aid shop tomorrow. I am super nervous about it, but with my recent EDS flare I need help.
I have problems with weak legs and I run out of breath. I’ve started looking at the Overland off road rollator. I’m thinking it will help me go places and not worry about falling.
Is it okay to get a wheelchair as a preventative? I can walk very well but if I’m on my feet for more than an hour I start feeling a lot of pain. I’ve considered getting a wheelchair so I don’t have to get to that point when i go to events or have longer days but it still feels like it might be excessive or not worth the money for the amount of times I would need it.
I recently got some new tablets for my epilepsy and ive noticed one of the size effects are that sometimes my legs go weak, im debating if i should get a wheelchair but im scared everyone will just call me lazy, because sometimes i can walk and then others i walk to my garden gate and my legs basically collapse on me would you say im lazy?
Hi, not at all. I have a heart /lung condition and use a wheelchair which also works as a rollator.Also thinking about a wheelchair because of severe fatigue,chest pain,falls, dizziness and black outs. If it keeps you safe and helps improve your quality of life. It is a good thing
I’m also an ambulatory wheelchair user. It changed my life as I was “disabling” myself by avoiding situations and occasions I couldn’t manage, and my chair ENABLES me. You have done a great job at explaining what it’s like xxx
I came across this channel by chance and I’m now thinking the same thing. I’m avoiding so much of life because it makes me so exhausted. What if I had energy for experiencing more by getting a wheelchair? I’ve rented one before going to an amusement park and it helped so much.
@@reneets5729 Renee? It changed my life. If you feel you are saying no to opportunities then it is your lack of equipment ( I call my chairs my “tools “. I have a couple - electric and manual) that is holding you back. I believe that was me ‘disabling’ myself, and why? In case some arse calls me a fake when I step out? My youngest son makes a great joke of it…. If we are in a supermarket and I have to step up from my chair to get a high item he says loudly “it’s a miracle!!” Before collapsing into a fit of giggles!
ENABLE yourself by getting the tools you need to live the life you had before (almost) xxx
Two of the biggest advantages of having a wheelchair are 1- Being able to be spontaneous while out of the house with friends and 2-not having to turn down invitations because you don’t think you’ll be able to walk far enough and still have the energy to enjoy the outing. Everyone just needs to think of it as a tool to help with difficulties. I really liked the comparisons with reading glasses and umbrellas 🤓 🌂 x
Iv been really thinking about using one but been to embarrassed this has made me consider it more now x
It's wild how ableist and misinformed so many people are about mobility aids and disabled folks. Lately, I've considered getting a mobility aid bc I'm so done with feeling like I'm dying and/or passing out whenever I go out and walk too far/stand too long (POTS, hEDS, narcolepsy), and having to say no to things I really wanna do bc it involves too much walking. I'm young, I want to _live_ and experience things, not be stuck at home. :( I know from awful experience what my body can and can't tolerate, even a few blocks is too many, and my body needs some sort of mobility aid and I need to stop denying it one regardless of anybody else's opinion. I appreciate this video and your channel and transparency about your own experiences. ♥
i just searched "mobility aid for fatigue" and found your videos. my gf has long covid, which gives them a lot of fatigue and muscle/joint pain. we're both trying desperately to adapt, and trying to deal with this shrinking of what's possible. the idea of using a wheelchair for days out, even if it's just when i or a friend can be there to push, is an incredible thought. and you just made it sound really possible. thank you so much for making these videos.
I have long covid and have become a wheelchair user as a result, if you have any questions lmk!
Ambulatory wheelchair and crutches user here. It took me a long time to accept that im disabled and it was actually my husbands idea to get a wheelchair so i can actually leave the house as i was housebound. I felt so embarrassed to use it at first, scared that someone was going to see me stand up from the car to get into it or vice versa and shout at me that i was "faking it". Its been 3 years and the feelings are going away gradually. For me it's meant i can go to places that i wouldnt have before. An example is that we lost a beloved family member just before Christmas and i was able to goto their funeral knowing that firstly i would get a seat (because so many people went that most didn't get a seat and had to stand for the entire service) and also if we had to wait around outside for any reason (talking to family afterwards etc) then i would be able to sit in my wheelchair during this and join in the conversation instead of having to go and wait in the car for my husband to finish talking etc. I've also been able to go to shops and such so no more being housebound and i also dont need to worry about getting unwell in public and fainting or falling. For me its as much about my safety as it is giving me back some freedom, I have POTS, fibro and CFS and my wheelchair has improved my life. If you're struggling and its impacting your life consider getting one. Despite my worries that someone is going to yell at me for being able to walk a few steps from my car to the chair, its thankfully never happened.
This is the reason I'm considering a cane instead the crutches I use when I go to a wheelchair. Some time I used wheelchair with my armpit crutch but it is uncomfortable to keep it, but without nothing more when people look at us and we can stand it's embarrassing. For that reason I think a cane would be good and also a kind of help when I leave the wheelchar for a while.
Regarding not being disabled enough to use mobility aids. This view was forced on me by health professionals who refused to listen to me say I need help walking, they didn't care I was housebound. I feel cfs is not taken seriously and we are left to find our own way to live with our illness. Great video I agree with all your points. My family and partner also gaslight me saying I don't need it.
my husband didn’t believe i needed a wheelchair . or mobility aid . a few years later he has finally realised my struggles and how much they help me
I had similar stuff with doctors who kept insisting that if I used a mobility aid I'd just get weaker and weaker so instead I just became homebound since I couldn't walk without something. You deserve to use whatever helps you have more freedom and move more easily!
I'm an ambulatory wheelchair user, and it's sad how many times I'm called lazy because I don't use my chair a lot in my house. There are two reasons for this: my house isn't set up for a wheelchair, and secondly, it's referred to as wall walking.
Halloween, and going to Christmas light shows are too painful for me so i cant stay very long. Many times my mom would take me home because i would fall down and start crying and writhing on the dirty dirty ground. So im currently researching mobility aids so i can finally do what i love without the pain. This video has indeed helped.
oh no! that sucks! sounds like a mobility might help! x
I needed to see this today! I also have ME/CFS combined with long-covid which impacts my breathing and causes fainting episodes. My world is getting smaller because I'm struggling to take the step of incorporating a wheelchair into my life, as a tool of freedom. But I'm getting there! I remember how easily I understood taking my grandma out for the day with her wheelchair, sometimes she would push it and walk and then she would get tired and we would push her in it. But on very uneven ground the discomfort of the wheelchair was worse than walking so she would get out of it again. We have a lovely photo of her pushing her wheelchair round Karnak temple in Egypt, a trip she wouldn't have been able to do without the chair ♿. I need to worry less about what other people think and afford myself the same flexibility and understanding I've given to others 🥰
I have been in a wheelchair everytiime I leave the house since 2014 due to ME/Fibromyalgia being in pain and suffering fatigue with lack of stamina and strength and sleep daily is no joke. I too initially had resistance from my GP about going into a wheelchair. - she said my legs would weaken through lack of use - I said they were weak and in pain anyway that was why I was asking not because they were the latest fashion trend! Eventually an OT recommended the use of a wheelchair to my GP. Very recently I moved house and bought a stairlift too. I will be 60 next b/day but never feel too young/too anything to ask for help
I have ME/CFS too and have also been struggeling a bit with starting to use a wheelchair. Because I can walk, just not very far. I mostly stay home because of it.
I am an ambulatory wheelchair ♿️ user my self i had some one came running up to me and said that i was cured all because i stood up to get something from a shelf once, and i did not want tackle her so i just smiled but it is so much better for me using my wheelchair makes my life easier than trying to walk as walking causes me pain and fatigue
Kkkkk my wife had that same experience on a shopping mall. When she stood up a young lady looked at her with the face of someone witnessing a miracle!
Thank you for being a voice for ambulatory wheelchair users! (especially online) ❤ The benefits, practicalities and limitations are shared by myself and many others, I'm sure. Thank you 😍
i have really needed a video like this ! i actually had severe anxiety the first time i went out in the wheelchair and one of the shops had steps . hubby was like just get out of the wheelchair . the overwhelming fear of being judged i couldn’t cope with it . although i now still have anxiety i don’t look at anyone’s faces as it’s my business not there’s . thank you for your videos !!! you don’t know how much they are helping people ❤
I really appreciate this video. I have hEDS and orthostatic hypotension, and I have been considering getting a wheelchair but I definitely get the feelings of being "not disabled enough." I'm very lucky in that I am still pretty physically fit (minus the actual health conditions obviously) and I work a full time retail job and am sometimes able to walk or hike for miles, but every once in a while I'm just so exhausted or all the pain catches up with me at once, and it's hard to even get out of bed. It feels like I'm "not qualified" for a wheelchair, even though I'd never say that about anyone else, and I think I've just convinced myself that, because I'm still able to move through the pain, I don't deserve help. It's really nice to hear that other people feel the same way and it's not just in my head 😅
Before getting a wheelchair I definitely thought getting one would be giving into the illness. I recently read a saying on having CFS and still trying to live life as best you can,but still having hope that you will heal. The saying called it realistic hope, or acceptance with a fighting spirit. I thought that was a great way to put it. 😊
I find that I can actually shop around now that I have a wheelchair. I never realized how focused I was on walking till I didn’t have to anymore!💗
I just started using a wheelchair ambulatorily a few days ago and I created a sticker to put on my wheelchair explaining why my legs move. I made it fun to look at and read, in case a little kid comes up to me. I’m a short person with a Mohawk and I wear mostly black, and my wheelchair is covered in stickers so if people are gonna stare, I’m giving them something to look at :) You’re not faking it, don’t let people gaslight you into suffering without a wheelchair. Personalize it like I did! It bonded me to my chair honestly, and I think it’s good for the soul to take care of something that takes care of you❤ stay slaying, guys!❤
That's great! I love that you made your chair a teaching aid/conversation piece!
@@RowenaSnow-px3jg thank you so much!!☺️
I’m an ambulatory wheelchair user, it saves me so much energy. This allows me to go more places and enjoy my life more fully. Thanks for sharing.
I totally agree!
26 years into my rare disease, 17 of which, undiagnosed. I’ve run the range of physical limitations many times. I’ve atrophied from severe flares, extended hospitalizations, and even coma. I’ve had to learn to walk again or need physical therapy to regain strength. Now ALL my connective tissue’s have torn in 2 shoulders & 1 hip, leaving just wheelchair use. But… I can still stand on 1 leg if I hold onto something. Oh the dirty looks I got when I DARED stand at the last show I went to. Heaven forbid I wanted to see the stage better. Such ignorance in the world. I don’t let it phase me anymore. It’s my struggle to fight or enjoy however I see fit. If their narrow minds can’t understand that, it’s nothing to do with me. So thanks for educating the masses!
I‘ve recently finally gotten my diagnosis for my severe back pain, muscle weakness and spasms in my legs and back that i‘ve been dealing with for over 4 years. I‘m starting to look into mobility aids because i‘ve been struggling so much recently and it‘s just been getting worse and worse that I can barely get around my house (which has a lot of stairs) I‘m 20 years old and i‘ve been fighting for years for validation and understanding from doctors which i‘m finally getting. I‘ve been starting to get scared of getting to and from work and simply doing life. Thankfully where I live is extremely accessible for wheelchairs. It‘s been a long journey, but i‘m so happy i‘m finally able to get the help I need. Your video is really helpful for me to in a way accept my future, because it is scary. So thank you for this.
(I have nerve problems in my back that get worse with time and one day without surgery I will be fully paralyzed from the waist down.)
This video was super necessary! I've struggled too with not feeling "disabled enough" to use mobility aids, and society having next to no education on them adds an extra level of discomfort and sometimes even harrassment. I agree that people irl are much kinder to those with mobility aids than on the internet! That's been my experience too. Also, off topic, but your outfit is fire 🔥 👌🏼
I love my wheelchair. Without it I hadn't the opportunity to leave the house and go to the city for example. Since I use my wheelchair I was at so much places I haven't been in years. ❤
Well said! So happy I get to represent ambulatory wheelchair users on TV as a lot of people have no understanding of us!
I appreciate your video. I have a medical condition that sometimes making walking dangerous because during those times I usually fall down. To stop getting harassed I take a walking cane with me (and sometimes I get hurt anyway). I fall down in parking lots, at home, anywhere. I've accidently broken items in my home, lost the diamond off my expensive engagement ring when I fell hard on the concrete, twice broken my glasses. Thank for your video, making me realizing I'm not alone.
For me, I'm a permanent ambulatory wheelchair user. Meaning I can walk or stand but only for a few minutes at a time (getting less and less as the months go by) but I have an electric wheelchair that I use daily for most of my "walking". So I can walk to the bathroom since it's close by, but I can't walk to the kitchen or living room because it's a little too far away. I can also walk down some stairs to get to my car, but them I'm in excruciating pain and have to sit and relax my spine before going anywhere. And I say permanent because every few months (for the past 2 years) my back and hips get worse. More and more pain doing anything, which is why I'm disabled and qualified for an electric wheelchair. Also because I have dwarfism and have short arms and a bad neck, arthritis, weak muscles strength and also hyper extention in my joints so I can't push myself in a manual wheelchair.
Another reason it’s nice to walk sometimes, if possible, instead of using the wheelchair is to get a bit of exercise and avoid the de-conditioning that is so common with this illness.
I'm ambulatory too. I use a chair most of the time even in house but I have privilege is I can walk around people's houses if needed as long as plenty of seating opportunities !
Lovely you have good friends who'll push you 🙂
yes I get you, not all people are permanent users, Pain, fatigue, or balance conditions (I have this{left leg shorter than right, AND I have no sense of balance-due to schizencephaly}), can use these to, and RIGHTLY SO, this is an OT capacity maintenance\mobility strategy; you can't last forever, or at least all day (you are NOT powered by the "energiser bunny"), so to conserve what capacity you do possess, you do "chair" for a while, and when needs must, you go 'normal' for as long as your conditions allow for, NO problem with that!! just takes the 'normal people' some acceptance, understanding and accommodation of your specific needs, whatever they may be. I don't use a wheelchair, but due to my Autism and the balance conditions, I do take advantage of the "courtesy seats" on trains and busses, to rest, and compose myself.
Hey Elinor, thanks for your video 👏.
I have recently become an Ambulatory Wheelchair User to Dash. I have struggled for years with my mobility because like others have said I didn't feel that I was disabled enough to warrant my using a wheelchair & I didn't want to be labelled, but recently things got so bad that I now can't walk far or for long without being in extreme pain. I call my wheels 'Dash' as it helps with my acceptance & the chair doesn't feel so foreign to me. Still getting used to it, but it is opening doors that I felt were closed to me. Thanks again for sharing & best wishes to all Ambulatory Wheelchair Users, we CAN do this 👍. Christine
Thank you! Thank you for sharing. I have recently become an ambulatory wheelchair user. At 53, I developed spinal stenosis within the inner cavity of my spine. No herniations, no slipped discs. Just an aggressive form of arthritis is growing and slowly constricting my spinal cord. This means, like you, I can maneuver throughout my house with the aid of a cane unless lifting is involved, then it is safer for me to do it in the chair. When I go outside, I do use the chair, but I do have my canes to help me. My biggest problem is the folks in my hamlet. They all know how I used to be, always working in my yard, running errands, and taking the kids to functions and school events. But in the last two years, the arthritis has been so aggressive that all of a sudden, they see me around town in a chair and then getting up with my canes to do stuff. I am always asked why the chair if I can walk? I tell them, "You can walk and use your arms and hands to do things as you walk. When I walk, I need my canes and I can't use my arms and hands to carry things because I am trying to stand upright without my legs giving out. I use the chair to be able to function as normal as I can with my new disability" I still get the clicky ones that keep spreading rumors, but they don't bother me. I was offered to have surgery on my back, but there is only a 52 to 58% success rate, with only one to two years of pain-free, but I would lose the total use of my legs. So I rather have little use of my legs now than not have use of them at all. Your videos are great! I am glad I found you!
Just wanted to thank you Elinor as your vlogs really encouraged me to get a wheelchair a few weeks ago. It’s so freeing and really opens your life up. All so well put ❤
I was so terrified to start using my cane because of all the shit you see online. I did get a few too young “jokes”, mostly from family and work, but that was it. Everyone has adapted to it quickly, my friends didn’t bat an eye aside from of course being worried about my health and I never had to explain why I don’t need my cane every day.
From strangers I’ve gotten nothing but positive interactions. Had an amusement park worker comment on how cool it was that it could fold when I folded it down for a kiddie coaster. An old lady at a convention mentioned how she’d tried one like mine and asked how I liked it, ended up laughing about how I also used mine backwards sometimes in the beginning (the reason that she hadn’t been using hers) and that yeah I’m sure that would make it very uncomfortable. Also ended up being corrected by my totally able bodied friend when I fucked up my wrist using it at too high of a setting (cause I like having my arms up damnit!) and man do I hate it when he’s right lol. Haven’t even had parents shush their kids, which I definitely thought would be more prevalent; in fact I made some kids laugh explaining to my baby niece that she shouldn’t put her mouth on the foot cause that’s like eating a shoe (my cane’s been her favorite toy since the day I started using it, idk why)
Such an important video, very close to my heart too. Plus, I love your outfit and hairstyle here! xx
this really convinces me to get a wheelchair, also due to chronic fatigue possibly caused by MS. I have my cane and I'm going to ask my doctor about getting forearm crutches for more support and mobility, but ive been considering a wheelchair for a good bit ESPECIALLY since my last flare up where I literally was basically housebound while trying to get through a semester of college (wherein I missed most of my classes and finals were ROUGH). Im out of my flare now (presumably) since about the last couple weeks of school, but my fatigue and weakness are much worse, and while on vacay to see my partner I slept through a good bit of it or was unable to move from doing honestly pretty light activities. I still work on getting past the feeling like this is, like many believe, me giving up, because its NOT. So yes, if you sympathize with these things like in the video, definitely consider it. even if you work your way into it like I plan to in a way with getting crutches first!!
ALSO IF YOU HAVE MEDS, T A K E T H E M *BONKS YOU ON THE NOGGIN GENTLY*
Thankyou so much for this video- I’ve been umming and ahhing getting one because I always thought I’m not disabled enough, and what will people say? But I am disabled enough I don’t go out because I’m worried I won’t be able to get back or do the thing I’m travelling to. I won’t walk my dog, I won’t go shopping , I won’t go to the doctors despite being Ill with the pots,Eds, fibro and having chest pains. I can’t wait to get my chair so I can go to the zoo again, going shopping even, going out with friends. Thankyou for making me feel valid.
I'm loving the regular uploads at the moment :D. Still no pressure to keep it up though :D
4:00 This is why I'm getting a chair. The less I have to walk means the more I can walk. Thanks to PIP and all their infinite wisdom we have just lost our car and so without a chair I would lose all my independence. Add to that having a 2yr old and we definitely need to be able to leave the house xx
I'm 27 in a few months and have been chronically ill since I was 10... I've been progressively declining for the last 5yrs or so and I am now taking the leap to get a wheelchair... I always felt like I'd be seen as a fraud because I can wall or do walk sometimes or I stand up when in my chair... I desperately want to avoid conflict but at the cost of pretty much killing myself off... I'm less fun for my daughter in this state even though I thought getting a wheelchair would make me less fun... I see it as an energy preservation tool... Just need to find the right one and save up some money... Being disabled is expensive 🙈
This. I’m going to be an ambulatory wheelchair user I’m terrified to get my first chair
I myself use a wheelchair,it's like you said like using when you needed.i myself use a electric wheelchair and it's great n have the mobility that everyone takes forgented.
so true! i never thought about it until I couldn’t do it anymore!
@@ElinorBrown when using my wheelchair,I don't bother what people think.the important thing is that I'm mobile n free to do things that I need or want.
OMG 7:36 - 8:10 >>>> My thinking patterns exactly!! LOL, Guess I have some things to re-think about. Thank you for opening my mind to a different perspective Elinor!
I struggle with feeling entitled to use a wheelchair. I use them in stores and I'm always amazed at how much better I can enjoy things.. but I'm terrified of people especially coworkers being rude about it.
I used to walk beside my mobility scooter so I could walk a little bit and someone actually accused me of stealing it. I never walked with it again, and now I hate using it.
I have recently become a Wheelchair user, due to severe pain from Ankylosing Spondilitis meaning I can't walk more than very short distances now. I struggled with it but am so glad I did now, it's giving me a freedom.again to be out and about and enjoy it again. It's making such a difference to myself and wife .
This is a great video, wish I'd seen it ages ago, I had really internalized the idea that people who can walk at all don't use them, so wrong.
I am wondering if I could have that, because after 3 years, the injury I had limits me quite a bit. I also can’t work certain jobs bedside it requires me to stand on my feet. It’s hard to walk those long distances with pain, but also I am in pain a lot of the time. And now it seems like it’s gotten worse
I'm looking forward to watching the rest of your videos because, at 35 years old, I am soon going to be an ambulatory wheelchair user. I have ankylosing spondylitis and psoriatic arthritis. My experience basically tracks with yours particularly in the accepting-disabilities department.
thanks for this, I'm currently using crutches full time and have just started using wheelchair when I go into supermarkets and the difference it makes is astounding but my mum still questions why I even need crutches which is what is mainly putting me off from getting a wheelchair of my own. My husband though is really supportive. It's going to take me a while to save up the money to be able to get a wheelchair so I'm just going to see how things go with my mum and that in the mean time whilst saving up.
Love this video and your outfit! The explanation with the glasses is perfect , and so is your elaboration on how to choose whether to bring along the wheelchair! I alterate between 2 canes (named Fritz and Franz), a walker (named Ferdy) and a wheelchair (named Geraldine). I mostly cannot lift Gerri onto a bus by myself but with Ferdy it has become routine and the most bus drivers here have somewhat got to know me and Ferdy's folding mechanism
Thanks for explaining this. I'm so fed up of people asking mw. 😊
Glad it was helpful!
Oh the accessibility! I am not disabled however i went through an acident where i broke both legs, i had to relearn how to walk and broke some teeth, when i went to the dentist to get them fixed i told them about the acident and about how i would go in a wheelchair and needed to know if they had accessibility for it, they said they did because the building had an elevator. When i get there just imagine the surprise when i see not only one but two steps to get to the dentist ofice, yeah, great accessibility. I was lucky enough that i managed to get up and down the steps holding the wall and my husbands hand, but i did get pissed off and it did hurt a bit. I have had close relationships to some wheelchair users so i was pretty aware of this dificulty but never in my life i had to go through this, it was humiliating and dehumanizing
When you spoke about walking somewhere and then feeling unwell once you finally reached your destination, I could definitely relate. And you're absolutely right. It does take the initial excitement and enjoyment out of you. Thats why I've chosen to purchase mobility aids and use them when needed. So that I can avoid those situations.
I have FND I have been using crutches but I don’t feel like I need them but my legs can be effected because I fed like most of the time I can walk but during flare ups I can’t
Thank u so much for this video. I bought my 1st transit wheelchair this week (although I have used some before). I'm so nervous about going out on bumps, slopes, public transport etc. I know it will take practice. But I'm excited to finally get outside again, even a little bit.
Thank u for showing me there's others like me! Love your video, thank u for making me feel like a person for a change x
Thank you for your clear explanation.
Glad it was helpful!
My family says I'm fine. Then the doctor said something was wrong. Now I need to fight it. Act normal. Eventually, they accept it. My older sister and mom are the worst.
I wear eye glasses to read and draw, no prescription I just bought them when I found out it was harder to not wear them than to wear them, I don't regret that decision at all I don't feel imprisoned when I wear my reading glasses I don't feel sad or put down or like I just gave up when I wear them im glad I'm not putting that extra strain on my eyes damaging them further I'm really grateful for that I do feel a little bad when I dont wear them because its frustrating and that's when I do feel down I do struggle and I do worry about my body, buying those glasses made everything better not worse it was not giving up super greatful they cost six dollars not six hundred thousand though that makes me feel really lucky someday we will have progressed to the point that mobility aids don't break the bank and everyone who needs one I hope will have one
I actually just got a referral for a wheelchair, I have bad chronic pain in my left leg due to work accident about 3 years ago. My foot healed wrong so now I have bad chronic pain.
I've needed to use a wheelchair for a few years but embarrassed. I own an airhawk that I got low cost from a "medical closet" by luck (and very aware of total gratitude for having it.) I am now at the quality of life but can't get it in and out of my car alone even tho it's folding and "light" (40 pounds). Just being in electric cart in the grocery store and getting up to get something pisses people off, it feels like being in a wheelchair people will feel more "ripped off?" Hard enough. Who can afford to pay for a way to get it in and out of the car?
Some help/advice, I just don’t want to make myself that vulnerable and ask for the help from friends or family, don’t get me wrong they’d be happy to help, and for me there’s this fear that if I sit in the chair I won’t get up, it terrifies me
Thank you so much. Just bought my second powered chair and can walk. I have BVH imbalance condition. After being in hospital for three months with many fractures. The time has come but coming terms is hard. The new wheelchairs folds up and goes in the boot of the taxi. I’m terrified of its first outing but must do it.
Thanks for sharing. That video just helps and encourages me. I have a wheelchair / mobility aid advise in a mobility aid shop tomorrow. I am super nervous about it, but with my recent EDS flare I need help.
How did it go?
I am getting to the point where I might need a wheelchair on and off. Your video is inspiring ❤.
And you are so very beautiful ❤️
Thank you for the reflection. You really should consider an electric wheelchair.
Thanks for this video. I'm dealing with this new reality and I appreciate your positive outlook.
Thank u so much for this informative video. I really thank god for coming across your video
I have problems with weak legs and I run out of breath. I’ve started looking at the Overland off road rollator. I’m thinking it will help me go places and not worry about falling.
Is it okay to get a wheelchair as a preventative? I can walk very well but if I’m on my feet for more than an hour I start feeling a lot of pain. I’ve considered getting a wheelchair so I don’t have to get to that point when i go to events or have longer days but it still feels like it might be excessive or not worth the money for the amount of times I would need it.
of course! the only rules are what will help you/work for you is what you should get! x
I recently got some new tablets for my epilepsy and ive noticed one of the size effects are that sometimes my legs go weak, im debating if i should get a wheelchair but im scared everyone will just call me lazy, because sometimes i can walk and then others i walk to my garden gate and my legs basically collapse on me would you say im lazy?
Hi, not at all. I have a heart /lung condition and use a wheelchair which also works as a rollator.Also thinking about a wheelchair because of severe fatigue,chest pain,falls, dizziness and black outs.
If it keeps you safe and helps improve your quality of life. It is a good thing
@@lauraannebevan1198 might have a good look for one
❤
Did you get medical encouragement to use your wheelchair?
will you be friends
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❤️🧡💛💚💙💜🤎🖤