I have a cane but I’m scared to use it in public because of stupid people and internalised ableism. I don’t need it all the time I would need it hour to hour eg putting it away and bringing it out multiple times a day people just don’t understand that and a lot of people think “all or nothing”
I've just started going out in my wheelchair! I was terrified the first time, I hid my face and sobbed Today was my 5th outing and now I can't imagine being without it 💗
I just purchased a similar chair from care co and I’ve avoided using it for the first time today. This has encouraged me to go for a ride later tonight! It’s so lovely to see another young person and their journey with cfs/me, sending you all the health!!
You reminded me that I'm brave for going out on my own in my electric wheelchair all the time! It did get easier for me. It's a shame that we feel anxious about going out in our wheelchairs because of abelism and stigma but it's worth it and I would be very proud of myself if I was you.
I just stumbled across this video, and I wanted to let you know that you’re not alone ❤ I myself am 23 and have a fair few conditions myself, but I also have me/cfs. And I have yet to get a wheelchair simply because I cannot afford it at the moment. But I definitely wanted to let you know that you’re strong, and other peoples opinions do not matter, it is about your comfort and happiness. What other people think does not matter. Your aids are YOURS, not theirs. And no one but you can say whether or not you need them. Stay strong and stay proud xx If you ever need to talk to someone, I would love to chat 😊
I love this! I went through a very similar situation. For me it’s been hard because we still haven’t pin pointed what’s wrong with me so it’s feels less validating and that’s a hard struggle. I bought my wheelchair because I was going to Disney and felt more comfortable having my own especially for after the trip. I ended up buying a lightweight one so I could load and unload it in my car. I was super excited and relieved when I finally got mine in the mail. I didn’t realize how much I needed one until I started using it. I Can actually do things now that I would’ve otherwise had to pass up on because the pain and fatigue wouldn’t allow me to enjoy myself or I would end up bedridden for a day or two because I would’ve tried to push my body and regret it later. Society has led us to believe that “disabilities” and wheelchairs are only for people that “look” disabled. That really makes it hard for people that don’t look that way. I hope you’re enjoying your chair and are more comfortable using it 😊
I just got a folding electric wheelchair and it is amazing! I can go to the park with my friends kids even go on little hikes. I virtually never left the house and now I can go on little excursions which really opens up my world and does wonders for my mental health.
Once you realize how much easier your life gets with the wheelchair, your worries and anxieties will fade away. It will help you be a better YOU, and that's what's important 💗 I also have ME/CFS+POTS and other conditions, and I'm getting my custom wheelchair (Panthera S3) + electric wheels in a couple of months. It's a very expensive combo but thankfully our healthcare system provides it for me for free. I can't wait to finally be more active!
Thank you for making this video. I'm in the process of trying to accept my new mobility needs. The idea of people suddenly seeing me in a wheelchair terrifies me. You've truly inspired me to just embrace my new reality and if anyone makes me feel less than then F**k them 😊 . Thank you
After watching this video again its made me even more proud of you! When your sitting on the bed most people see a pretty able bodied lady! But then the wheelchair is delivered & you are off to the shops being pushed in your wheelchair & being used as a shopping trolley! 🤣But it took so much courage for you to use the wheelchair & plenty of tears first of sadnees you having to use it & joy with how much it helps you! And yes I can imagine some older folk saying what a shame someone so young in a wheelchair or they think you had a accident! You have a genuine reason to use a wheelchair! Its like me when I have to use my white cane in poor light but still look at my phone! And before I lost my last bit of hearing for now I could hear a bit on the speaker phone! People use wheelchairs for different reasons! Some can walk on good days! None of us are faking our problems! When I am out with my blind cane it's because its too dangerous without it mainly in the dark! So never give up & ignore the haters! It's fantastic to see no thumbs down on here 💜💜
I’m definitely on the journey of buying my own wheelchair! It’s been super hard to mentally deal with the fact I need one. I am not able to stand/walk for longer then 5 minutes without horrible pains. Hopeful to find one soon :>
Same here, I'm ambulatory but can't stand and walk any real length of time right now due to some compression nerve pains from cancer , it gives me anxiety to go out , I am always looking for a place to sit when I go out and praying there won't be a long walk or wait to do what needs to be done, I just got a chair and it's one less thing to stress about
I deal with a lot of pain daily and have done for years. It’s been getting worse though. My friends and family finally managed to convince me to go to the doctor about it, and I’m getting an MRI scan tomorrow and fingers crossed we find out what’s up. It’s looking more and more likely to be fibromyalgia and chronic fatigue. I use a walking stick to get around and thankfully where I live shops and uni are near enough for me to get around on good days. However, because it’s getting worse, I’ve started looking into the idea of a wheelchair. I have no idea where to start though. I’m so thankful for this video because it’s given me a lot of insight into the process. I fight a lot of insecurities, for example ime with what could be nothing, wether I really am struggling or I just need to grin and bear things, what if people harass me because I don’t look disabled, how will I be able to continue to build sets if I’m disabled, what if it gets even worse if I don’t get help, etc. it scares me so much, and I thankfully have people around me who understand and support me and push me to seek professional help.
I have CFS and recently broke my knee so decided now was the time to buy my own wheelchair because the hire one I had was so heavy and cumbersome to get in and out of the house and garden onto the street. I was super lucky to find a barely used Karma S Ergo 125 for £200 less than they are brand new, on eBay, somewhere close enough to collect! After my knee is healed I’ll be using it like you do, and I’m so glad I found your channel!
@@ElinorBrown you’re welcome, and thank you for responding! I was hoping to ask some questions actually if you don’t mind? I totally understand if it’s too much and I’m not expecting the perfect solution for every problem, I’m autistic so my queries are quite specific and I over explain a lot! I’ll start with my simplest question 😅 -How were your experiences when you first started using your chair and how long did it take to get used to it? I’ve been having trouble dealing with the transition from 6 weeks of nice smooth hospital floors to the unpredictable pavements, just as the weather starts to turn darker, colder, wet, windy and things start getting a little bit slippy and slidey 😬 I’m also usually alone when I go out to run errands and go shopping. How do you deal with things like uneven pavements, no dropped kerbs, small kerbs or getting around shops with narrow aisles (I only just fit between each aisle in my local shop. The pavements on my estate slant sideways towards the roads so I have one arm trying to steer myself straight and just one arm to push myself forward and there’s one dropped ramp that often has me stuck in the road coming right off a roundabout because even with a good momentum going slightly downhill and pushing on contact with it, it’s still too high for my front castors!) I can do it all, but it’s difficult, slow and my arms hurt afterwards. It’s already exhausting even though I try to make sure I take it easy but I can see & feel I’m slowly getting stronger. I’m worrying about losing that strength and the skills I’m gaining until I can start learning to walk again and recover enough to start using it only when I need to. -Being an ambulatory user and not needing to use your wheelchair all the time, do you do anything to maintain the strength needed to propel your own wheelchair alone in an inaccessible (and very wonky 😅) world? I’m currently doing a lot of physio for my broken knee so some days I add in some accessible workouts for my other leg, my core, back/shoulders/chest, hips and arm muscles but I can’t keep up a regular routine and I already had to learn the hard way about not overdoing it and triggering a flare up 😮💨 If you made it this far, thank you for dealing with my rambling, I did try to edit it as much as I could so it wasn’t as long! And thank you for your awesome content, I’ve been watching while I work on art projects and I enjoy it so much I often end up abandoning my work 😆
It makes me so happy that you bought one!!! That fear of using the chair I'm experiencing when using a cane. I'm so excited for you to be able to do things now that you weren't able to do before 💕 I absolutely love your videos!
I got fed up with having to rely on others to go annywhere or do annything so I just ordered my first power wheelchair! I have motor polyneuropathy and can´t walk more than 50-75 meters before my muscels act up and totally loose power and controll, and my arms are likewise, hence powerchair and not a manual... When it comes to how one feel using a chair is hard to say for sure, I for one never have felt "awkward" having a disability, but I´ve had my for so long I can´t remember not being a bit different... Hope you all out there who needs a bit of extra to be and get around have the strength to feel comfortable with what you are, and the strength to not punch every stupid person asking stupid questions before they think! 💪💪💪
Well done and I know what you mean , buy the time you get somewhere ,then your not well, then there's getting home. I can see now how helpful it's going to be. You feel anxious about being in it because it's a new thing. It will soon feel better. Take care 😎👍
LMAO - the very ending!!! 🙂Thank you for being willing to be vulnerable and transparent with your feelings and fears. It is very helpful to hear you talk about the same things that have been running through my mind. You're beautiful and seem like a lovely person! I'm so glad I found your channel. Hugs!
Well done Elinor for finally getting a wheelchair! I know the biggest worry was in able bodied people's eyes you don't look disabled enough to use one,it looks pretty cool & a fair price! Plus you finally admitted to yourself the wheelchair will be for life! I use a metal leg brace & got horrible comments! But the two hardest things in my life to face up to were getting hearing aids! I now have a 110db hearing loss leaving me profoundly deaf! Also I was told I had usher's syndrome type 3 but it now seems like I have Menieres disease! My sight has got bad enough I have got to start using a long red/white blind cane at night or in poor light! So like you with a wheelchair I had to take the plunge & get the blind cane! I had training but I have very little confidence! Walking along using a cane with a roller tip sweeping from side to side😭but like you with the wheelchair my cane & hearing aids are for life! Even my medical records say Deafblind! So I can see why u took so long to get a wheelchair! And able bodied people thinking your faking it while one day in your wheelchair & the other walking! But take no notice of the idiots your health comes first! On a lighter note I see your now wearing glasses! I have to say the frames suit you & show off your nice eyes! The problem I still find is you can wear glasses & nothing is said! But as soon as you get hearing aids you get treated like your a bit simple! People shout etc! So I hope this wheelchair gives you so much more freedom & if I was your age & fitter I would be honoured to push you in it! 💜💜💜💜
Don't let the fear get you...I ended up in one after a spinal cord injury got the best of me and I don't know WHAT took so long to use one. I was so productive and enjoyed doing things so much! It is probably a 'permanent' thinking kind of thing.
I got the pink wheel chair and it is very comfy. I got it for just under £200 and my kids love pushing me around in it! The arm rests are awesome for going straight up to a table and are easy to raise up and down Xxxx
I just bought my first manual wheelchair, for use when I'm out on longer shopping trips and stuff. I can't use it in the house, it won't fit in the doorways. But I've been practicing with it and it takes a lot more strength than I realized to wheel it yourself! It's not easy to maneuver. I haven't used it public yet and I'm not looking forward to it, I feel so self conscious.
That's great!! Mine doesn't work inside either!! Wheeling yourself is definitely difficult! I do it a bit in shops or to position myself the way i want but mostly other people push me because I don't have anywhere near the energy or physical fitness to push myself!! You can do it! its scary and you feel like people are looking at you but its super worth it when you can do things you wouldn't otherwise be able to do!! You got this!!
What I did was I bought a wheelchair from a garage sale to see how I do with it. I did get several different kinds. It's cheaper. I've used the best one for over a year. I also bought some seat cushions for wheelchairs and the egg one we see on TV. The Egg seater doesn't really work for the long run but if you're going in a store for a quick grab, it does just fine. I went to those Bin stores for the seat cushions which is also cheaper than going to a store especially for wheelchair accessories. I did get blessed to find an absolutely fantastic wheelchair that has lasted me over 2 years. I do interchange wheelchairs from now and then so I can fix and tighten screws in the chair while I use the other one. I am planning to buy a better wheelchair but they are soooo expensive.
so proud of you for doing this! just went through with this myself to manage my pots (especially with walking long distances) hoping it’s temporary, as i’m trying new medications as well but everything you said about being so scared to just do it, i totally understand! as someone who truly has never really cared what others think of me, it definitely came as a shock that this has held me back for this long. we got this!💗
I also mainly use canes. I also use a rollator for mid-distance but for long-distance like a fair, expo, museum that requires an hour or more walking I use my basic self push wheelchair. Recently I've been having more problems with weakness in my arms and am thinking about having to get a power wheelchair.
Thank you for another terrific video! I just bought a wheelchair myself… I painted my last one with some acrylic paints. Looking for some tips on decorating the new one! Cheers!
im in the position of before deciding to buy one! in the UK also & also visibly able passing & i understand ur reoccuring fears so much! rlly proud of u, glad i found ur channel 🌸
I had to start using a wheelchair recently. Took me 8 months to get one on the NHS. Its amazing! Not only can i get about after years, my 'friend' said he was embarrassed to be seen out and about with me in a wheelchair. It solved another problem that day and i got rid of my mate 😂 Great channel!
Hey Elinor! I only just found your channel and this is the first video I watched. I literally cried during the whole video because I relate to you so much. I've been thinking about getting a wheel chair since the beginning of January so almost 9 months now and I'm just too scared. Seeing you make this decision makes me so proud of you even though I don't know you haha. I'm still not ready yet but I'll keep your process in mind, reminding me that it's normal to feel anxious about it. Who knows. And you have a new sub of course 😊
I'm so happy that you connected to the video so much!! It took me a long time too so there's no rush!! Have you tried renting one for a week as a bit of practice ?? I did it and it help a lot with the anxiety (there's a video about it)! Don't feel bad that you're not ready yet, go at your own pace!! Its totally normal to be anxious!! Everyone I've talked to about it has said that they were scared too!!
If you don’t have one, I would recommend a cheap pressure cushion. The seat can be very uncomfortable in a chair and depending on how often you use it and for how long, you can be at risk for pressure sores xx
When you can, and after you've had the chair for a while, do a follow-up video with how it has helped. I hear a lot of people say how it has improved their quality of life because they can get out but I would love to hear how it it has impacted the physical well-being in a dysfunctional body that has me/CFS. Please 😊
I was just like you to start. However, I got frustrated being pushed as I like to take photos and I was never in the right place. I got a folding electric wheelchair which was amazing! I then got a big one from the NHS which is perfect! However, I have to pace it correctly because sitting in it is exhausting (I’m mostly in bed) but it is great! It tilts so I can rest in it.
Thank you so much sharing this video! You’ve made me excited to go on a few wheelchair excursions when I’m out of this flare (annoying ugh). I’m definitely going to start filming my wheelchair experiences too!! I’ve written down the name of the one you’ve got 🫣🥰
I have the same chair, i have had it for almost a year, the straps on the foot plate broke within a couple of weeks. I hated using a chair when i first got it and probably still do to a point. We are moving to an adapted property now so that means i get to buy a better wheelchair and have more freedom.
look at hand rim covers for decorating your chair, they can be pricey (it took me almost 2 years to buy them - i only finally bought them when i decided to make the leap from careco wheelchairs to active chairs) but they make the chairs so much nicer! they come in so many colours. also spoke guards (not the plastic sheets but the little rubber individual spoke covers) - they come in so many colours & aren’t pricey if you look in the right places (i look for bike spoke covers bc if anything has wheelchair in front of it the price magically increases🤦♀️) there’s also so many wheelchair cushions & what not that you can get in fun colours :) i wish you luck on your journey. i hope this chair treats you well (i had the i candy & it got replaced a couple of times within a year but the first few months it was an absolute game changer - i just wanted to do more than the chair could handle i think - most people say they last at least a couple years & are great). it was a game changer for me. i too was very self-conscious when i got my first chair, i refused to be seen in it when i first got it, hated walking the few steps to the cars etc. & often would go anywhere if i would have to do much as move a foot. but now i’ll get in & out without a second thought. i promise soon you’ll feel comfortable in you chair and it’ll become somewhat of a safety net for you
I'm in a similar position and have just bought a wheelchair. I managed to find a barely used second hand one for £300 (would have been around £2000 new). I'm excited to start getting out a bit more.
I’m wanting an electric one but my family is barely able to pay the bills so asking them to buy me a wheelchair is going to be too much. But I literally had a time last week where my energy was high but the pain in my feet was too severe to stand and all the things I needed to do needed walking or standing. Then yesterday I went to the store and all the riding carts were taken and I’d really wished I’d had my own to use
Hey 👋 hope you don't me commenting I thought I'd let you know that there are a few places that help with electric wheelchair costs You could try The Mobility Trust, Shine or DTD Charity. I wish you all the best 🧡
I am having a rough time finding the type I need for the price I can pay. My family says money is no option,but when I showed my husband one I liked he had a very surprised look on his face. I said, well think about it I really can no longer travel alone so we can surely sell one of my cars. He’s car car collector 😂now he looking at this differently. This is a tool for my caregivers not me. They need a comfortable,easy way to get me back and forth to the Drs. I have used a walker rollator for 8 years & can no longer stand so wheelchair is a must for getting me from room to room & out to the car. I have severe spinal issues as well as hands are not working well enough to self propell , plus somewhere to hang my oxygen bottle when I travel. It’s horrible to get me to the Drs appts me & it’s 3x a week at least. This will be life long so wheelchair has to be lightweight as well. Husband is growing older & a full time carer will be replacing him on travel if he can not lift the travel necessities into the car. My insurance asked me why I didn’t just call the car service they offer. I had tried, my oxygen tanks only last 3 hours per tank , during time I waited for the pickup from the Drs office I ran out of travel oxygen waiting around for testing etc. Also I am no longer able to get up the steps of the van & they will not assist you. I can really understand not willing to do it without gloves. I wouldn’t want the to touch me otherwise. Bottom line I have too many health issues to be at home , but I am. So we work with it.
I went just to town was to a shop for mobility aid (at least they said so inline) but all they had were braces and sticks- which I already have. Left the shop unsatisfied. I will try online.
I have FND and fibromyalgia and I am like you I can walk very short distances with two crutches and had to get wheelchair through GP. I still feel self conscious and it been 6 years now I am only 36. I self propelled wheelchair however since lockdown my ability is very very limited now which is disheartening
I hope your doing ok! Remember to do whatever is best for you! Mobility aids can be super helpful but don't feel bad if you cant manage them at the moment for any reason!! mental health is just as important as physical health!!
You could maybe use fabric paint on the back to decorate it a bit? I don't know if you enjoy art, consider yourself decent at it, or even if your disability would get in the way, but you can always do stencils or ask a friend for help. It could be a bonding thing, doing a fun little painting together.
Hi. Just watched your video. And it seems I'm a bit late to give you much advice as you received your wheelchair 2 year's ago. But a good upgrade perchance is hand rim covers . Just make sure that you get the correct size for your wheels
Sitting here looking at a big box that says MOBILITY+ Electric Wheelchair. So I know exactly how you felt when it arrived. I also spent months and months deciding, I even cancelled my first order two hours after making it..... but I KNOW this is going to change my life. What finally convinced me was going to a shopping centre with my family and having to sit in a cafe most of the time as I literally didn't have the strength to use my canes I was exhausted and I would have loved to look around the shops. I need my independence so I ordered an electric chair but it is extremely heavy and will bow need to buy a ramp for my car as well. And I am so anxious about even going into a supermarket it makes no sense to me. I have used a scooter for 2 years and that didn't bother me at all why is a wheelchair so different
you can do it!! It’s so scary at first but you can get used to and be surprised by how brave you are, once you start conquering your fears!! Hope it goes well!
Im renting a red cross wheelchair to try one out this week,I also have CFS. Im in a similar spot to you, im quite self conscious when using one. im trying one out to see if I can improve my quality of life. I really need to build up my arm muscles while dodging PEM. For colour wise you can get funky coloured duct tape to wrap the metal and I've seen a few Etsy sellers selling colourful seat cushions/covers
I hope you can get one that suits you perfectly. I am an artist and I share my painting demos and studio tours here. So much variety on UA-cam. All the best!
@@ElinorBrown no not very well this last 2 weeks am still recovering from major surgery from colitis it’s a hard recovery a very slow one But my spondylitis has had me on bed rest it’s killing me and not feeling well at all feeling very sick all the time I’ve had my tears 😊🙏😢
I've been looking at getting the exact same one! Would love to hear how you've found using it and potentially if you've been self-propelling on it? In the same boat as you in that I've got such internalised ableism and I'm so scared to start using one haha
Thanks for this video. Thats where I am going through. My walking stick was enough for some years. But then I had a wheelchair at hospital which gave me new freedom. So I googled for "am I strange that I want a wheelchair" to find out no, I am kot strange. Many people with EDS use one. Abroad. Here EDS awareness is zero. Even there must be at least 1000 patients with EDS, there even is no specialist for a population of 500 000 +. So I feel alone. Maybe next uni apointment I should ask the question about mobility aids. Even if I scared and ashamed.
2 years on, I have discovered that I have me and I currently use a crutch mainly for my arthritis in my hip, knee and spine, would you say a wheelchair is less fatiguing than my crutch, I mean self propelled please or I'm not sure, I love you
When I read "I can't afford a wheelchair at the moment", and similar statements, I feel very sad for people. Here in Sweden they're free for those who need them. My wife had polio as a child, and when it came back when she was around 60 she got free ellbow crutches, and a wheelcheir after 70. These are on loan, and have to be returned when they are no longer needed.
I'm in a similar boat. I can't stand still for no more than a few minutes, and even if I'm constantly moving, I can't be on my feet for no more than an hour without being in so much pain. I have a thrift store wheelchair that had helped me tremendously before my surgery, but it's too big and way too heavy. And the feet stick out really far. I want to ask my doctor if he can give me a prescription for a wheelchair, but I'm afraid he's going to deny me. I have a trip coming up that's going to require me to be on my feet all day and I know I can't do that. My last trip I had to cut short and disappoint the people with me because I could barely walk after a few hours, despite sitting as much as possible. I need something small, very lightweight, and doesn't have feet that stick out. I would like to be able to walk with it as much as I can, then sit in it and finish my day while also being able to squeeze in shops and etc. But out of pocket wheelchairs are expensive!
Because of my anxiety it would have been more difficult for me to have to justify needing it to the NHS, especially as I was already nervous about getting one anyway. And I am not on Pip at the moment!
I would like to say how come you bought a wheelchair how come your insurance did not buy the wheelchair for you like they do for us here because whatever wheelchair we need our insurance pay for it and it can be from power wheelchair or manual and my wheelchair that I will be getting my power chair it will be 30 something thousand dollars and if you need a manual wheelchair here that would only be $5,000 or less and they will have a wheelchair place come out and fit you for the right chair custom to your needs
In the UK we don't have insurance health care is free. I could have applied for a free one through the national health service, but honestly it was an anxiety problem. I didn't want to have to convince someone I needed one, I thought it would be easier to buy it myself.
i’m looking for a pink wheelchair currently and there are so few options 😭😭 i also hate pastel. neon only for me!! so my options are even more limited😢😢
Do you have a wheelchair or another mobility aid??
I have a cane but I’m scared to use it in public because of stupid people and internalised ableism. I don’t need it all the time I would need it hour to hour eg putting it away and bringing it out multiple times a day people just don’t understand that and a lot of people think “all or nothing”
I use crutches and a wheelchair
I’ve been using a walking stick and I’m also waiting for my fit-to-size wheelchair to arrive which I ordered almost a month ago.
I use a cane and am working up the money for a wheelchair :)
I'm getting a cane. Won't come until November 1st. I'm nervous and excited to use it. Afraid of being judged.
I've just started going out in my wheelchair! I was terrified the first time, I hid my face and sobbed
Today was my 5th outing and now I can't imagine being without it 💗
I'm so happy for you!
I just purchased a similar chair from care co and I’ve avoided using it for the first time today. This has encouraged me to go for a ride later tonight! It’s so lovely to see another young person and their journey with cfs/me, sending you all the health!!
I hope you get to use it I use one
That's great! how did it go! have you managed to get more used to it??
You reminded me that I'm brave for going out on my own in my electric wheelchair all the time! It did get easier for me. It's a shame that we feel anxious about going out in our wheelchairs because of abelism and stigma but it's worth it and I would be very proud of myself if I was you.
You are def brave!! I feel super successful whenever I use mine!!
I just stumbled across this video, and I wanted to let you know that you’re not alone ❤
I myself am 23 and have a fair few conditions myself, but I also have me/cfs. And I have yet to get a wheelchair simply because I cannot afford it at the moment. But I definitely wanted to let you know that you’re strong, and other peoples opinions do not matter, it is about your comfort and happiness. What other people think does not matter. Your aids are YOURS, not theirs. And no one but you can say whether or not you need them.
Stay strong and stay proud xx
If you ever need to talk to someone, I would love to chat 😊
I love this! I went through a very similar situation. For me it’s been hard because we still haven’t pin pointed what’s wrong with me so it’s feels less validating and that’s a hard struggle. I bought my wheelchair because I was going to Disney and felt more comfortable having my own especially for after the trip. I ended up buying a lightweight one so I could load and unload it in my car. I was super excited and relieved when I finally got mine in the mail. I didn’t realize how much I needed one until I started using it. I Can actually do things now that I would’ve otherwise had to pass up on because the pain and fatigue wouldn’t allow me to enjoy myself or I would end up bedridden for a day or two because I would’ve tried to push my body and regret it later. Society has led us to believe that “disabilities” and wheelchairs are only for people that “look” disabled. That really makes it hard for people that don’t look that way. I hope you’re enjoying your chair and are more comfortable using it 😊
totally agree, wheelchairs are game changers!!!
I just got a folding electric wheelchair and it is amazing! I can go to the park with my friends kids even go on little hikes. I virtually never left the house and now I can go on little excursions which really opens up my world and does wonders for my mental health.
Thats so great!!
Hello which folding electric wheelchair did you purchase struggling finding options
Once you realize how much easier your life gets with the wheelchair, your worries and anxieties will fade away. It will help you be a better YOU, and that's what's important 💗
I also have ME/CFS+POTS and other conditions, and I'm getting my custom wheelchair (Panthera S3) + electric wheels in a couple of months. It's a very expensive combo but thankfully our healthcare system provides it for me for free. I can't wait to finally be more active!
Thank you for making this video. I'm in the process of trying to accept my new mobility needs. The idea of people suddenly seeing me in a wheelchair terrifies me. You've truly inspired me to just embrace my new reality and if anyone makes me feel less than then F**k them 😊 . Thank you
After watching this video again its made me even more proud of you! When your sitting on the bed most people see a pretty able bodied lady! But then the wheelchair is delivered & you are off to the shops being pushed in your wheelchair & being used as a shopping trolley! 🤣But it took so much courage for you to use the wheelchair & plenty of tears first of sadnees you having to use it & joy with how much it helps you! And yes I can imagine some older folk saying what a shame someone so young in a wheelchair or they think you had a accident! You have a genuine reason to use a wheelchair! Its like me when I have to use my white cane in poor light but still look at my phone! And before I lost my last bit of hearing for now I could hear a bit on the speaker phone! People use wheelchairs for different reasons! Some can walk on good days! None of us are faking our problems! When I am out with my blind cane it's because its too dangerous without it mainly in the dark! So never give up & ignore the haters! It's fantastic to see no thumbs down on here 💜💜
awww thankyou!
I’m definitely on the journey of buying my own wheelchair! It’s been super hard to mentally deal with the fact I need one. I am not able to stand/walk for longer then 5 minutes without horrible pains. Hopeful to find one soon :>
Its difficult emotionally but they are so useful, and can give you a lot of freedom!!
Same here, I'm ambulatory but can't stand and walk any real length of time right now due to some compression nerve pains from cancer , it gives me anxiety to go out , I am always looking for a place to sit when I go out and praying there won't be a long walk or wait to do what needs to be done, I just got a chair and it's one less thing to stress about
I feel you! The mental battle is so hard ❤️ Stay strong love
I deal with a lot of pain daily and have done for years. It’s been getting worse though. My friends and family finally managed to convince me to go to the doctor about it, and I’m getting an MRI scan tomorrow and fingers crossed we find out what’s up. It’s looking more and more likely to be fibromyalgia and chronic fatigue.
I use a walking stick to get around and thankfully where I live shops and uni are near enough for me to get around on good days. However, because it’s getting worse, I’ve started looking into the idea of a wheelchair.
I have no idea where to start though.
I’m so thankful for this video because it’s given me a lot of insight into the process.
I fight a lot of insecurities, for example ime with what could be nothing, wether I really am struggling or I just need to grin and bear things, what if people harass me because I don’t look disabled, how will I be able to continue to build sets if I’m disabled, what if it gets even worse if I don’t get help, etc.
it scares me so much, and I thankfully have people around me who understand and support me and push me to seek professional help.
Well done you!!! Lots more places will now be within range 🦽🦽🦽😃😃😃💜💜💜
yayyy!! I hope so! 💜 😍
I have CFS and recently broke my knee so decided now was the time to buy my own wheelchair because the hire one I had was so heavy and cumbersome to get in and out of the house and garden onto the street. I was super lucky to find a barely used Karma S Ergo 125 for £200 less than they are brand new, on eBay, somewhere close enough to collect! After my knee is healed I’ll be using it like you do, and I’m so glad I found your channel!
Thats so great!!
@@ElinorBrown you’re welcome, and thank you for responding! I was hoping to ask some questions actually if you don’t mind? I totally understand if it’s too much and I’m not expecting the perfect solution for every problem, I’m autistic so my queries are quite specific and I over explain a lot! I’ll start with my simplest question 😅
-How were your experiences when you first started using your chair and how long did it take to get used to it? I’ve been having trouble dealing with the transition from 6 weeks of nice smooth hospital floors to the unpredictable pavements, just as the weather starts to turn darker, colder, wet, windy and things start getting a little bit slippy and slidey 😬 I’m also usually alone when I go out to run errands and go shopping. How do you deal with things like uneven pavements, no dropped kerbs, small kerbs or getting around shops with narrow aisles (I only just fit between each aisle in my local shop. The pavements on my estate slant sideways towards the roads so I have one arm trying to steer myself straight and just one arm to push myself forward and there’s one dropped ramp that often has me stuck in the road coming right off a roundabout because even with a good momentum going slightly downhill and pushing on contact with it, it’s still too high for my front castors!) I can do it all, but it’s difficult, slow and my arms hurt afterwards. It’s already exhausting even though I try to make sure I take it easy but I can see & feel I’m slowly getting stronger. I’m worrying about losing that strength and the skills I’m gaining until I can start learning to walk again and recover enough to start using it only when I need to.
-Being an ambulatory user and not needing to use your wheelchair all the time, do you do anything to maintain the strength needed to propel your own wheelchair alone in an inaccessible (and very wonky 😅) world? I’m currently doing a lot of physio for my broken knee so some days I add in some accessible workouts for my other leg, my core, back/shoulders/chest, hips and arm muscles but I can’t keep up a regular routine and I already had to learn the hard way about not overdoing it and triggering a flare up 😮💨
If you made it this far, thank you for dealing with my rambling, I did try to edit it as much as I could so it wasn’t as long! And thank you for your awesome content, I’ve been watching while I work on art projects and I enjoy it so much I often end up abandoning my work 😆
It makes me so happy that you bought one!!! That fear of using the chair I'm experiencing when using a cane. I'm so excited for you to be able to do things now that you weren't able to do before 💕 I absolutely love your videos!
Thankyou!! x
I got fed up with having to rely on others to go annywhere or do annything so I just ordered my first power wheelchair! I have motor polyneuropathy and can´t walk more than 50-75 meters before my muscels act up and totally loose power and controll, and my arms are likewise, hence powerchair and not a manual... When it comes to how one feel using a chair is hard to say for sure, I for one never have felt "awkward" having a disability, but I´ve had my for so long I can´t remember not being a bit different... Hope you all out there who needs a bit of extra to be and get around have the strength to feel comfortable with what you are, and the strength to not punch every stupid person asking stupid questions before they think! 💪💪💪
Thats so exciting!! hahah so true!!
Well done and I know what you mean , buy the time you get somewhere ,then your not well, then there's getting home. I can see now how helpful it's going to be. You feel anxious about being in it because it's a new thing. It will soon feel better. Take care 😎👍
Thankyou!
LMAO - the very ending!!! 🙂Thank you for being willing to be vulnerable and transparent with your feelings and fears. It is very helpful to hear you talk about the same things that have been running through my mind. You're beautiful and seem like a lovely person! I'm so glad I found your channel. Hugs!
Well done Elinor for finally getting a wheelchair! I know the biggest worry was in able bodied people's eyes you don't look disabled enough to use one,it looks pretty cool & a fair price! Plus you finally admitted to yourself the wheelchair will be for life!
I use a metal leg brace & got horrible comments! But the two hardest things in my life to face up to were getting hearing aids! I now have a 110db hearing loss leaving me profoundly deaf! Also I was told I had usher's syndrome type 3 but it now seems like I have Menieres disease! My sight has got bad enough I have got to start using a long red/white blind cane at night or in poor light! So like you with a wheelchair I had to take the plunge & get the blind cane! I had training but I have very little confidence! Walking along using a cane with a roller tip sweeping from side to side😭but like you with the wheelchair my cane & hearing aids are for life! Even my medical records say Deafblind! So I can see why u took so long to get a wheelchair! And able bodied people thinking your faking it while one day in your wheelchair & the other walking! But take no notice of the idiots your health comes first!
On a lighter note I see your now wearing glasses! I have to say the frames suit you & show off your nice eyes! The problem I still find is you can wear glasses & nothing is said! But as soon as you get hearing aids you get treated like your a bit simple! People shout etc!
So I hope this wheelchair gives you so much more freedom & if I was your age & fitter I would be honoured to push you in it! 💜💜💜💜
Thankyou for the lovely comment!!
Don't let the fear get you...I ended up in one after a spinal cord injury got the best of me and I don't know WHAT took so long to use one. I was so productive and enjoyed doing things so much! It is probably a 'permanent' thinking kind of thing.
You're so right!! the fear is not helpful at all
I got the pink wheel chair and it is very comfy. I got it for just under £200 and my kids love pushing me around in it! The arm rests are awesome for going straight up to a table and are easy to raise up and down Xxxx
Thats great!! so happy for you!
Please tell me where you got it from, I’d love a pink wheelchair!
@@jennifernorman2000 I got mine from Careco xxx
I just bought my first manual wheelchair, for use when I'm out on longer shopping trips and stuff. I can't use it in the house, it won't fit in the doorways. But I've been practicing with it and it takes a lot more strength than I realized to wheel it yourself! It's not easy to maneuver. I haven't used it public yet and I'm not looking forward to it, I feel so self conscious.
That's great!! Mine doesn't work inside either!! Wheeling yourself is definitely difficult! I do it a bit in shops or to position myself the way i want but mostly other people push me because I don't have anywhere near the energy or physical fitness to push myself!! You can do it! its scary and you feel like people are looking at you but its super worth it when you can do things you wouldn't otherwise be able to do!! You got this!!
What I did was I bought a wheelchair from a garage sale to see how I do with it. I did get several different kinds. It's cheaper. I've used the best one for over a year. I also bought some seat cushions for wheelchairs and the egg one we see on TV. The Egg seater doesn't really work for the long run but if you're going in a store for a quick grab, it does just fine. I went to those Bin stores for the seat cushions which is also cheaper than going to a store especially for wheelchair accessories. I did get blessed to find an absolutely fantastic wheelchair that has lasted me over 2 years. I do interchange wheelchairs from now and then so I can fix and tighten screws in the chair while I use the other one. I am planning to buy a better wheelchair but they are soooo expensive.
so proud of you for doing this! just went through with this myself to manage my pots (especially with walking long distances) hoping it’s temporary, as i’m trying new medications as well but everything you said about being so scared to just do it, i totally understand! as someone who truly has never really cared what others think of me, it definitely came as a shock that this has held me back for this long. we got this!💗
Awww thankyou!! Yes!! we totally got this!!!
I also mainly use canes. I also use a rollator for mid-distance but for long-distance like a fair, expo, museum that requires an hour or more walking I use my basic self push wheelchair. Recently I've been having more problems with weakness in my arms and am thinking about having to get a power wheelchair.
Pushing your own wheelchair is really difficult!!
@@ElinorBrown Yes!
Thank you for another terrific video! I just bought a wheelchair myself… I painted my last one with some acrylic paints.
Looking for some tips on decorating the new one! Cheers!
So pleased you did it! I wish I’d gotten one sooner to be honest, would have saved me so many crashes ~well done lovely 💞
Thankyou!
im in the position of before deciding to buy one! in the UK also & also visibly able passing & i understand ur reoccuring fears so much! rlly proud of u, glad i found ur channel 🌸
You can do it!
I had to start using a wheelchair recently. Took me 8 months to get one on the NHS. Its amazing! Not only can i get about after years, my 'friend' said he was embarrassed to be seen out and about with me in a wheelchair. It solved another problem that day and i got rid of my mate 😂
Great channel!
Hey Elinor! I only just found your channel and this is the first video I watched. I literally cried during the whole video because I relate to you so much. I've been thinking about getting a wheel chair since the beginning of January so almost 9 months now and I'm just too scared. Seeing you make this decision makes me so proud of you even though I don't know you haha. I'm still not ready yet but I'll keep your process in mind, reminding me that it's normal to feel anxious about it. Who knows.
And you have a new sub of course 😊
I'm so happy that you connected to the video so much!! It took me a long time too so there's no rush!!
Have you tried renting one for a week as a bit of practice ?? I did it and it help a lot with the anxiety (there's a video about it)!
Don't feel bad that you're not ready yet, go at your own pace!! Its totally normal to be anxious!! Everyone I've talked to about it has said that they were scared too!!
If you don’t have one, I would recommend a cheap pressure cushion. The seat can be very uncomfortable in a chair and depending on how often you use it and for how long, you can be at risk for pressure sores xx
Thankyou!
When you can, and after you've had the chair for a while, do a follow-up video with how it has helped. I hear a lot of people say how it has improved their quality of life because they can get out but I would love to hear how it it has impacted the physical well-being in a dysfunctional body that has me/CFS. Please 😊
Yes, this is a plan!!
I'm so happy for you as I know it's been a big deal for you! 💕
Thankyou!
I was just like you to start. However, I got frustrated being pushed as I like to take photos and I was never in the right place. I got a folding electric wheelchair which was amazing! I then got a big one from the NHS which is perfect! However, I have to pace it correctly because sitting in it is exhausting (I’m mostly in bed) but it is great! It tilts so I can rest in it.
well donee!! ive just found your channel and I'm binge-watching videos. :)
Awww! Thankyou so much!!
Congrats! Hope it helps you and the fears calm soon!
Thankyou! they have!
Thank you so much sharing this video! You’ve made me excited to go on a few wheelchair excursions when I’m out of this flare (annoying ugh). I’m definitely going to start filming my wheelchair experiences too!! I’ve written down the name of the one you’ve got 🫣🥰
I like the one you went for too, it looks comfy! 😊
It is very comfy!
I have the same chair, i have had it for almost a year, the straps on the foot plate broke within a couple of weeks. I hated using a chair when i first got it and probably still do to a point. We are moving to an adapted property now so that means i get to buy a better wheelchair and have more freedom.
I haven't had any problems with the straps so far!! I really enjoy mine! That's great, hopefully you can get one that works better for you!!
look at hand rim covers for decorating your chair, they can be pricey (it took me almost 2 years to buy them - i only finally bought them when i decided to make the leap from careco wheelchairs to active chairs) but they make the chairs so much nicer! they come in so many colours.
also spoke guards (not the plastic sheets but the little rubber individual spoke covers) - they come in so many colours & aren’t pricey if you look in the right places (i look for bike spoke covers bc if anything has wheelchair in front of it the price magically increases🤦♀️)
there’s also so many wheelchair cushions & what not that you can get in fun colours :)
i wish you luck on your journey. i hope this chair treats you well (i had the i candy & it got replaced a couple of times within a year but the first few months it was an absolute game changer - i just wanted to do more than the chair could handle i think - most people say they last at least a couple years & are great). it was a game changer for me. i too was very self-conscious when i got my first chair, i refused to be seen in it when i first got it, hated walking the few steps to the cars etc. & often would go anywhere if i would have to do much as move a foot. but now i’ll get in & out without a second thought.
i promise soon you’ll feel comfortable in you chair and it’ll become somewhat of a safety net for you
Thankyou for this comment!! it was super helpful!!
I'm in a similar position and have just bought a wheelchair. I managed to find a barely used second hand one for £300 (would have been around £2000 new). I'm excited to start getting out a bit more.
Thats so exciting!!
I’m wanting an electric one but my family is barely able to pay the bills so asking them to buy me a wheelchair is going to be too much. But I literally had a time last week where my energy was high but the pain in my feet was too severe to stand and all the things I needed to do needed walking or standing. Then yesterday I went to the store and all the riding carts were taken and I’d really wished I’d had my own to use
Hey 👋 hope you don't me commenting
I thought I'd let you know that there are a few places that help with electric wheelchair costs
You could try The Mobility Trust, Shine or DTD Charity. I wish you all the best 🧡
I am having a rough time finding the type I need for the price I can pay. My family says money is no option,but when I showed my husband one I liked he had a very surprised look on his face. I said, well think about it I really can no longer travel alone so we can surely sell one of my cars. He’s car car collector 😂now he looking at this differently. This is a tool for my caregivers not me. They need a comfortable,easy way to get me back and forth to the Drs. I have used a walker rollator for 8 years & can no longer stand so wheelchair is a must for getting me from room to room & out to the car. I have severe spinal issues as well as hands are not working well enough to self propell , plus somewhere to hang my oxygen bottle when I travel. It’s horrible to get me to the Drs appts me & it’s 3x a week at least. This will be life long so wheelchair has to be lightweight as well. Husband is growing older & a full time carer will be replacing him on travel if he can not lift the travel necessities into the car. My insurance asked me why I didn’t just call the car service they offer. I had tried, my oxygen tanks only last 3 hours per tank , during time I waited for the pickup from the Drs office I ran out of travel oxygen waiting around for testing etc. Also I am no longer able to get up the steps of the van & they will not assist you. I can really understand not willing to do it without gloves. I wouldn’t want the to touch me otherwise. Bottom line I have too many health issues to be at home , but I am. So we work with it.
That sounds really tricky, Hope youre doing oK!
Good for you! 🧡 I've been thinking about getting a wheelchair for myself too. Still a little nervous about it at the moment though!
You can do it!
I went just to town was to a shop for mobility aid (at least they said so inline) but all they had were braces and sticks- which I already have. Left the shop unsatisfied. I will try online.
I feel the same way, i’m going to to be getting my first one soon.
I have FND and fibromyalgia and I am like you I can walk very short distances with two crutches and had to get wheelchair through GP. I still feel self conscious and it been 6 years now I am only 36. I self propelled wheelchair however since lockdown my ability is very very limited now which is disheartening
I get really embarrassed. My anxiety and depression and autism kicks in big style.
I hope your doing ok! Remember to do whatever is best for you! Mobility aids can be super helpful but don't feel bad if you cant manage them at the moment for any reason!! mental health is just as important as physical health!!
Im buying a wheelchair too. Nice vid.
You could maybe use fabric paint on the back to decorate it a bit? I don't know if you enjoy art, consider yourself decent at it, or even if your disability would get in the way, but you can always do stencils or ask a friend for help. It could be a bonding thing, doing a fun little painting together.
That's such a fun idea!!
Hi. Just watched your video. And it seems I'm a bit late to give you much advice as you received your wheelchair 2 year's ago.
But a good upgrade perchance is hand rim covers . Just make sure that you get the correct size for your wheels
Well done you xx
I just got my first wheelchair, still anxious about going out in it but I’m really hoping it helps improve my quality of life
Sitting here looking at a big box that says MOBILITY+ Electric Wheelchair. So I know exactly how you felt when it arrived. I also spent months and months deciding, I even cancelled my first order two hours after making it..... but I KNOW this is going to change my life. What finally convinced me was going to a shopping centre with my family and having to sit in a cafe most of the time as I literally didn't have the strength to use my canes I was exhausted and I would have loved to look around the shops. I need my independence so I ordered an electric chair but it is extremely heavy and will bow need to buy a ramp for my car as well. And I am so anxious about even going into a supermarket it makes no sense to me. I have used a scooter for 2 years and that didn't bother me at all why is a wheelchair so different
you can do it!! It’s so scary at first but you can get used to and be surprised by how brave you are, once you start conquering your fears!! Hope it goes well!
@@ElinorBrown this was a year ago been filming UA-cam videos with it its good but heavy to put in the car
Im renting a red cross wheelchair to try one out this week,I also have CFS. Im in a similar spot to you, im quite self conscious when using one. im trying one out to see if I can improve my quality of life. I really need to build up my arm muscles while dodging PEM.
For colour wise you can get funky coloured duct tape to wrap the metal and I've seen a few Etsy sellers selling colourful seat cushions/covers
You'll def get less self conscious with practice!! Yes, there are loads of decorating options!!
I hope you can get one that suits you perfectly. I am an artist and I share my painting demos and studio tours here. So much variety on UA-cam. All the best!
Thankyou!!
Welcome!
I got my wheelchair from amerzon but I bought the xtra cushion as well it comes with a back cushion as well for more comfy when sitting
Thats great!
@@ElinorBrown no not very well this last 2 weeks am still recovering from major surgery from colitis it’s a hard recovery a very slow one
But my spondylitis has had me on bed rest it’s killing me and not feeling well at all feeling very sick all the time I’ve had my tears 😊🙏😢
Who ever is making the dun dun da dun noises is awesome 🤍
I've been looking at getting the exact same one! Would love to hear how you've found using it and potentially if you've been self-propelling on it?
In the same boat as you in that I've got such internalised ableism and I'm so scared to start using one haha
I mostly get friends to push me because i get tired so easily!! You can do it!!!
Girl you're so cute on this dress
Thanks for this video. Thats where I am going through. My walking stick was enough for some years. But then I had a wheelchair at hospital which gave me new freedom. So I googled for "am I strange that I want a wheelchair" to find out no, I am kot strange. Many people with EDS use one. Abroad. Here EDS awareness is zero. Even there must be at least 1000 patients with EDS, there even is no specialist for a population of 500 000 +. So I feel alone. Maybe next uni apointment I should ask the question about mobility aids. Even if I scared and ashamed.
2 years on, I have discovered that I have me and I currently use a crutch mainly for my arthritis in my hip, knee and spine, would you say a wheelchair is less fatiguing than my crutch, I mean self propelled please or I'm not sure, I love you
omg i just bought the same wheelchair a few weeks ago! i also have CFS and fibromyalgia. hows it been going? have you self propelled a lot?
When I read "I can't afford a wheelchair at the moment", and similar statements, I feel very sad for people. Here in Sweden they're free for those who need them. My wife had polio as a child, and when it came back when she was around 60 she got free ellbow crutches, and a wheelcheir after 70. These are on loan, and have to be returned when they are no longer needed.
I'm in a similar boat. I can't stand still for no more than a few minutes, and even if I'm constantly moving, I can't be on my feet for no more than an hour without being in so much pain. I have a thrift store wheelchair that had helped me tremendously before my surgery, but it's too big and way too heavy. And the feet stick out really far. I want to ask my doctor if he can give me a prescription for a wheelchair, but I'm afraid he's going to deny me.
I have a trip coming up that's going to require me to be on my feet all day and I know I can't do that. My last trip I had to cut short and disappoint the people with me because I could barely walk after a few hours, despite sitting as much as possible. I need something small, very lightweight, and doesn't have feet that stick out. I would like to be able to walk with it as much as I can, then sit in it and finish my day while also being able to squeeze in shops and etc. But out of pocket wheelchairs are expensive!
I bought the Viper wheelchair and had nothing but trouble with it. Bits fell ogg within weeks. Bought it from Care co. Would not buy from them again
Oh No!!!
Does your wheelchair feel heavy to push? I'm buying one that's about 10 kilos but worry the weight would put too much strain on my shoulder x
My wheelchair is too heavy for me to push myself when im in it!! But when I'm walking and using it kind of like a walker it feels extremely light!!
@@ElinorBrown thank you! I'll take note! X
With insurance like medicare
I know I need a wheelchair sometimes but I'm terrified to tell my mom
Does U.K. nhs cover the cost in us Medicare would be about four hundred us dollars
the nhs does cover wheelchairs but I didn’t want to have to “prove” I needed it, getting one was scary enough, and luckily I could afford it!
Why didn't you just get a free one on pip or the nhs
Because of my anxiety it would have been more difficult for me to have to justify needing it to the NHS, especially as I was already nervous about getting one anyway. And I am not on Pip at the moment!
@@ElinorBrown you really should look into PIP.
My wheelchair gif me freedom , it wil do that to you too
New sub here
Thanks for subbing !!
Your. A. Beautiful. Ladies. A. Diamond 💎 your. Unstoppable.
I would like to say how come you bought a wheelchair how come your insurance did not buy the wheelchair for you like they do for us here because whatever wheelchair we need our insurance pay for it and it can be from power wheelchair or manual and my wheelchair that I will be getting my power chair it will be 30 something thousand dollars and if you need a manual wheelchair here that would only be $5,000 or less and they will have a wheelchair place come out and fit you for the right chair custom to your needs
In the UK we don't have insurance health care is free. I could have applied for a free one through the national health service, but honestly it was an anxiety problem. I didn't want to have to convince someone I needed one, I thought it would be easier to buy it myself.
Be careful, lest you end up with a dodgy clinical wheelchair from an old pensioner's orthopaedic ward. Cheers!
hahah, i think mines ok looking and i have plans to customise it!!
i’m looking for a pink wheelchair currently and there are so few options 😭😭 i also hate pastel. neon only for me!! so my options are even more limited😢😢