Yes for sure :) I think it will also help break down the stereotyping of wheelchairs such as ambulatory wheelchair users, the benefits of having/using a wheelchair, using a wheelchair when you have an invisible illness/disability etc.
I'm doing basically the exact same thing tomorrow, and seeing someone else talk through the process and emotions is helping me feel less anxious about it. Thanks for posting this
I've just got a wheelchair, and I'm going through the very same feelings right now. I'm absolutely heartbroken that I now need one. Thank you for being genuine and posting your struggles as there aren't many posts like yours. The majority are sort of "accept it, adapt n get on with it" but some of us just can't accept we need one.
I'm thinking about using a wheelchair for the first time at a museum this weekend and I'm pretty worried. I would be using a manual wheelchair from the museum which would require someone pushing me and I don't know if I'm comfortable feeling that vulnerable with someone. I mean allowing someone to control my movement feels like a big deal. I also just feel like it would be a burden to that person. I'm just glad I could hear from other people with similar struggles. Thank you
You can do this sweetie I feel we go through stages..at first you noticed every single person looking,you feel embarrassed and the attention is overwhelming. Then you realise all the looks don’t matter.. I remember at the beginning I felt so much anxiety when my friend offered to wheel me around a vegan festival Or my mum getting a shopping chair.Sheer panic.. However..the more you use it the more comfortable you will feel. The wheelchair is a life line for people like us..it took time and it’s not easy at first emotionally BUT this is our life,our disability and saving energy is key. You can do this! Yay! I’m soooo glad you enjoyed yourself..be very proud of yourself. You’re a strong lady and you will find yourself not thinking about it as much. I’ve started to crack jokes..a man asked why I was in the chair and I said ‘Oh it’s from a shark attack’ he said ‘Wth’ I said ‘ Only kidding but it sounds cooler doesn’t it’ He laughed his socks off..and then we spoke in detail about our illness. Also..If you ever go to Cornwall they have beach wheelchairs there,their amazing due to the distance of most beaches. I just want to hug you and tell you..you got this girl!im routing for you!
awww! thank you so much! this is such a nice message! I'm becoming more comfortable with using a chair but I definitely have a way to go!! saving energy is so important fot me and i dont know why it took so long for me to realise that a wheel chair is the perfect energy saving device!! hahah! i might say that next time some one asks!!
@@ElinorBrown It took me some time as well,everyone is different tho but don’t be too hard on yourself.Onwards and Upwards 😊 Love your walking aid btw,very nice 👌
Can I just say how lovely it is to see someone being real and showing your anxious thoughts on camera. I’ve only just started watching your videos (I have EDS not CFS/ME) but I find you a really helpful, real person to watch. Thank you for your videos!
Thank you for speaking so openly. Much of what you said is exactly what I think about in my own life. I'm still undiagnosed, but have been sick for 5 years. A lot of what holds me back is the feeling of "Am I really bad enough to need it?" Because it's only on about half of days, I can't do anything more than basic daily functioning & classes. I also worry about bringing it up to my doctors or my family and them invalidating me. Or people who know me seeing me differently. But I also feel like it could allow me more freedom. I could go out with my friends if I knew I could sit when I needed to or roll if my legs stop working. I could wait in line at the store. It's hard to think something could help me but feel held back by external factors. And I really appreciate hearing that I'm not alone in that.
The worry about whether I was sick 'enough' was a big issue for me for a long time!! But if it will help, even a little, even just sometimes then it would be beneficial and therefore it is bad 'enough'. I know how scary it is to say you want a mobility aid, it was terrifying for me but i got a good reaction from almost everybody!! not everybody have the same experience but i'm sure that you'll be able to find at least a couple of people who will be on your side!! (maybe friends?) It's so worth it!! I've done things with friends that i just couldn't have done without it!!
Reading this has really made me feel a lot less alone. I have chronic pain and fatigue but no diagnosis, and getting around is really hard and takes a lot out of me. But I'm worried that I'm not "disabled enough". I know that's not a thing, but I just feel like I'm overreacting. I know some kind of mobility aid would help me, but much like you I'm worried that I'll get told I don't need it. I don't want to risk asking for help just to get invalidated. But I can barely leave the house. Going out of the house for about an hour and a half, two days in a row, not even doing much, got me stuck in bed for a couple days. I don't know what to do
Thanks for sharing. It is exactly what goes on in my mind- I guess it is nearly time for me to get a wheelchair, but I fear being looked at in public, asking for help, mountains, and feeling guilty about just asking for a wheelchair prescription.
your videos are so comforting to me i could cry! i’m a 21 year old guy, i’m about to start a teaching career, but i’ve got more and more ill and confused in the past few months until i ended up in hospital with heart palpitations. i am now realising i have M.E . it doesn’t feel fair :( and it’s both scary and so frustrating because i’m terrified i’m just going to get more ill, meanwhile my parents are in denial about the seriousness of this condition and how ill i am rn, they think going to bed earlier would help me as if i don’t have to spend all day resting anyway. i’m really glad i found your channel, thank you 💙
I'm so happy to create comforting content!! I'm sorry everything is really hard for you at the moment, and the people around you aren't very understanding but hopefully they will begin to understand more as time goes on!!
Proud of you! Its hard to chose something so visible and that will bring so many questions - especially from those who normally see you on your feet - but using a chair can allow you to do SO much more and really experience the world again. When I finally started using a wheelchair I wished I had just given in sooner because it would have allowed me to do so much more that I missed out on because I couldn't keep up or stand long enough.
Awww Thankyou! I’m beginning to realise this, I always thought it was so uncomfortable to be looked at or asked questions but it’s a lot better than not being able to do things or doing things in pain! 💜
I bought a wheelchair today after realising that using my crutches on my bad leg days was making walking and essentially dragging my heavy legs around was exerting my energy in a way that wasn't worth it, and it's the fastest I've moved in weeks. I'm honestly thrilled and scared at the same time. Everyone who's seen me struggling to walk has said this will be a brilliant step to getting my independence back, but I'm more worried about how people who haven't seen me in PEM or on bad leg days will react if they see me in the chair
I'm so happy for you!! It is scary to anticipate what people think but you can di it and whether it works for you is the most important thing!! I recently bought my own, theres a new video all about it if you are interested!!
I love your housemates rainbow dress. I have M.E (and some other illnesses) and I use a wheelchair; I'm an ambulatory wheelchair user. I use my wheelchair whenever I go out otherwise I wouldn't be able to leave the house and I am so grateful to have my wheelchair. I can understand the social anxiety especially when people ask me things like ‘what’s wrong with your legs’ or ‘was you in a car crash’ and things like that - my legs are fine it’s just the rest of my body, brain, genes and collagen that is faulty but that’s a bit to complex to say to people when they ask me so I generally say that I can’t walk very well or something along those lines. It was hard at first when I first started to use my wheelchair but now I see so many benefits that my wheelchair gives me in allowing me to be able to leave the house when I'm well enough. My wheelchair helps me out so much and it reduces my PEM/PENE as well as pain and fatigue levels. PS: Just seen the end of your video, I'd defiantly speak with your GP about being referred to wheelchair services. My wheelchair is provided to me by the NHS and I just needed a supporting letter from my neurologist.
I’ll let her know! It is scary but I think I can get used to it! Inaccessibility must be so frustrating! If I decide I would benefit from having one permanently I will definitely discuss it with my GP.
@@ElinorBrown Thanks :) When I first started to use a walking stick I hated how the older ladies used to treat me on the bus. I received comments when I asked for the priority seat to be vacated of their bags and they'd tell me to sit upstairs or that I was 'young enough to stand' or the "looks" they give me or rolling their eyes or tutting or numbing under their breath about the situation. It got to the point where sometimes I'd get off the bus early to cry and eventually I stopped using the bus. Assistance on the trains was great though apart from the time when there was some miscommunication and the train left with me still on it but they was great and they got me off at the next stop and provided me with a taxi all the way home! Plus whenever their was a replacement coach service they'd provide me with a taxi then too. That was quite a few years ago now and my M.E is now classed as severe and I'm now house/bed bound and I use a wheelchair when I go out on the very odd occasion. I think UA-camrs like yourself and I help demystify what M.E is and how it affects us especially as young adults and also related topics like calling ourselves disabled and using mobility aids. I'd love to see how you get in your journey about the possibility of getting a wheelchair so that you're able to enjoy and participate in events more like the funfair in this video and how it helped your M.E and reduced the payback. In this video it was also interesting to compare your anxieties at the start of the video and then your reflections after at the end.
Please also consider that not all 'mis-uses' of disabled parking bays are actually mis-uses. My dad has a blue badge and whilst I don't have one myself, my ME (and a few other conditions) means that it's often just as helpful for me as it is for him as there are days when neither of us can walk far or might need to return back to the car quickly, however because we don't always look unwell (even if we feel it) we get comments from people all the time calling us nasty names for using a disabled bay. You never know if someone has an invisible disability or not. I know that probably wasn't what you were referring too and you probably know this already but I just wanted to put that out there! :)
@@annathirlaway1242 I'm sorry if I caused offence in my comment; I didn't mean to at all and I've changed my comment. I'm an ambulatory wheelchair user and I got my blue badge before I was provided with a wheelchair and I can relate to the challenges that having an invisible illness poses inc when using my blue badge. I have M.E myself and I know that all illnesses are unique to that person even those that share the same illness. In the past I received a lot of negativity from the public such as when I used to use the bus and needed a priority seat or even now when people see me talking a few steps out of the car to sit in my wheelchair or even when people see my legs moving when I'm sat in my wheelchair. More awareness of invisible disabilities is much needed as some comments I've received for having an invisible illness is really hurtful. I'm glad of the new changes to the blue badge scheme to allow people with invisible disabilities/illnesses to receive blue badges; more parking bays are much needed though. When I spoke about the misuse I was recalling incidences like for example where one time a couple had parked in a blue badge parking bay as they where buying a large TV. You and your dad have every right to use those parking bays and I hope if you wish to are successful in getting your own blue badge to make life just that little bit easier for you. Again, sorry if I caused offence. Naomi
@@AGirlCalledNaomi you didn't cause offence, don't worry! I just always like to take time to raise awareness about it as you never know who could be reading :) my dad has had his for years as he has a physical disability (although he can still technically walk so does not look how most people assume a disabled person to look) however I've been told I would likely not qualify for one despite being almost bed bound for most of my teens! I haven't persued it anymore because I know there are people who need it more than me but it does make my dad carrying one more of a 'blessing' (sounds a weird way to look at it) for those rough days. I do agree though, people don't always see the seriousness of using them properly which is frustrating, I just like to give people using them the benefit of the doubt as often as I can, as with disabled toilets etc as you never know! Thank you for clarifying though 😊
It's really hard at first. It hurts a lot at first, but it gets better I promise. I watched lots of videos of people in wheelchairs living fun lives when I first got sick, it started to be seen as a kind of freedom for me because things I wouldn't be able to do on my own two legs were now more possible. I like watching wheelsnoheels she is very upbeat and makes good content about living as a wheelchair user. If you are thinking about using a wheelchair more often I would invest in getting your own personal wheelchair. The hospital wheelchairs are cheap but they are super difficult to push yourself in. You are doing great. it takes lots of courage to use the mobility aids you need, this will open up lots of opportunities and new experiences you wouldn't be able to do with your legs. You will be able to go out for long periods with able bodied friends and family and keep up without the pain or fatigue. even simple things like going on a stroll in the park you will be able to do and it makes a big difference in quality of life. It's ok to cry and it gets better don't worry it will be ok.
Thank you so much for posting this comment. Reading that has really helped me I have chronic pain and fatigue and I haven't been able to do pretty much anything for months. I can barely leave the house without it causing me to be stuck in bed the next day, or next few days. Reading your comment helped me realize that I'm allowed to ask for help, and I deserve support So thank you 💙
thank you for making this video ;~; i've had so much of the same anxiety about using a wheelchair just out and about---it feels so embarassing for some reason plus my campus is very hilly. anyway this brought me so much joy and i really hope i can get over my fear a little more next time
I think that it is so brave of you not only taking the step but also documenting it and sharing it with us. I have FMS (and all its friends) and I have a really hard time trying to get past my pride of "I have managed so far without, so why can't I now?" Yes I have managed, but as you said, I have said no to so many things. A few years ago I injured my knee so I had to go to a festival with a wheelchair and my goodness it was so much better (ignoring accessibility issues for now.) I could walk that evening and the day after. It is a huge step, one I am still hesitant to make. Mostly because I am afraid to get into confrontations or mean looks if I get up. I don't look sick so therefore I'm not sick is many a stranger's argument. I must say, hearing my own thoughts spoken out loud by someone else hits home. Seriously reevaluating some choices I made. Thank you for your honesty and take my L&S. Love from across the pond 🇳🇱
Its a really tricky decision, but i have my own one now and it was the right thing to do for me, i havent had any bad situations from getting out of the wheelchair, no comments or anything!!
Well done on getting in the chair! The fact you were anxious beforehand and weren’t sure you were gunna be able to do it and got in the chair is such an achievement!
I know what you are going through , I have fibromyalgia , I am 68 and I wanted to go on holiday abroad but I could not stand in the long queues at the airport, so I received the help offered from the airline I was flying with . It was a horrible experience , not from the airline staff but from the able bodied people at the airport , the intense dirty looks from them was unbelievable!! most people with fibromyagia don't look disabled so maybe that was the reason but it was a horrible feeling I don't think I could go through that again, it spoilt what could have been a lovely holiday .
I’m 18 and just ordered my first wheelchair and I’m terrified my disability is hidden so I’m so scared of going out in public despite knowing it will help so much and I’ll be able to go out more.
@@ElinorBrown I've had a lot of encouragement from friends and I found this video was also very encouraging. My best mate told me they'd come over a few days before comic con to help me navigate travelling in my city so I could have some practice so I think I'd rent one out for the week.
Thank you for this video. I appreciate the vulnerability & honesty. I can relate so much. I have horrible social anxiety. The only thing that gets me out of my house is my ability to blend in quietly & go mostly unnoticed. The thought of people looking at me is enough to keep me inside. I also don’t like questions. Or feeling like I have to justify & explain myself. I’m the one that commented on your other video about your stick about me being terrified of using mine. 🤣 I’m so proud of you for this big step! :)
I only just come across your you tube channel & it breaks my heart seeing you in tears about using a wheelchair! Because of your chronic illness's your legs are weak so the wheelchair will be your legs! I wear a leg brace & people call out "run Forrest run" from the film Forrest gump! Tom hanks wears leg braces in the film! Plus I am profoundly deaf & wear two powerful BTE hearing aids & I keep thinking people are staring! Plus I have an indwelling Foley catheter & leg bag so I worry people will see the bulge of the bag or the bag leaks! Look how much happy you look in your wheelchair! All your friends are having fun with you! So please put your health first & pride second! 💜💜💜
@@ElinorBrown I loved the end of the video when you decided you need a wheelchair! Let people stare! It's your life & nobody will think any less of you! It's not your fault you have a chronic illness! Your bound to get the idiots that will say there does not look much wrong with you & it's in the mind! Plus any love interest will see past the wheelchair & see the real you! I know since making this video you have bought a wheelchair! Nobody will know if it will be for life with new treatments coming out every year! You can pimp the wheelchair up! But one word of caution since wearing My leg brace my leg has gotten weaker! Please be careful if you start using the wheelchair a lot your legs might weaken & you won't walk again even if you wanted too! I think you should get a tissue company to sponsor your video's as I am not afraid to say I cried along with you! 💜💜💜
When I brought my friend with me to his first Pride last year, I convinced myself that the parade wasn't that big of a deal and probably really boring compared to the festival and performances and parties after, so we could just skip it. Because I was weighing standing in the sun for 2 hours, vs being able to do anything else that day. And he said at the end of the night that he really enjoyed it, but wished he had seen the parade and wanted to make sure we were there for the next one. And I hadn't thought about that in a while, but this video convinced me. I'm going to use a wheelchair at Pride, and stay for the whole thing. And then I started crying a little bit too.
So happy for you! I'm also looking into wheelchairs at the moment so I'm definitely interested in more wheelchair-focused content. Wondering if you are looking into electric options, or powerchairs as well? I can't really propel myself in a manual wheelchair and would like to use it without someone else pushing me.
I would prefer a power-chair myself. I’m a very independent person who hates feeling like a burden. I’d much rather be able to move myself around independently. Long ways from there. I’m not even comfortable with my stick yet.
What scares me is the stare of ppl. The pity. I hate it when ppl feel pity for me. I am staying at the hospital. Wonderful day yesterday, first summerday, everybody was out in the park. So I took a wheel chair to get out. Was completely normal, as there are many ppl with mobility aids. There were even bedridden ppl in their beds in the park. So it was good. My knees and hip muscles are terribly week, my arms are stronger, so it was fine. I sat in the grass and sketched and felt- relieved.
This is so helpfull! Thank you for sharing your experience!! I am not diagnosed with anything still trying to convince my doctor its not just my weight. I have constant excruciating pain in both my hips which makes walking even with a stick very difficult been trying to decide on wether to get a wheelchair then tonight my next door neighbour, who also has mobility issues, gave me a wheelchair and im so anxious (and feeling a little defeated) but hopefull that maybe i can go do more things now and get out of the house 😐
urghhh!! I’ve heard so many people say doctors just won’t look past weight, it’s so unfair!! hopefully you can find a good doctor, that considers everything you’re experiencing!! that’s great! hope it helps!
I just became an ambulatory wheelchair user and I am struggling with feeling more validated having bought my wheelchair off of Amazon vs a custom made one. I see soooo many custom wheelchairs and I only have one from Amazon.
It's still valid!! You've bought whats right for you!! I have my own one now and it certainly isn't custom!! (i have a video about it if you are interested)
good that you felt you could talk about it, I am a member of access and inclusion committees, and have Autism, not your disability, but from my observations about these issues, Bugger the "NORMALS " just think of the end game, you NEED this to get out and integrate into the community, you definitely DON'T need to be a para or quad to use one!!; pain and fatigue is something the world has to accept and live with, sometimes people can walk, stand etc, and for some people they just can not, so NEED these tools to further their capacity to do things, and it is SOCIETY that needs to change it's thinking, Not you.
I have only been diagnosed with me/cfs and fibromyalgia for a yr. Ive had 3 surgeries on my feet and legs in the last 3yrs. I know your fear, i walk with a stick. Im pretty housebound. Its because of peoples perceptions that im afraid to use one. I suffer from vestibular migraines and other co morbidities as well. My anxiety levels are through the roof when i go anywhere.
I haven't got one yet, but after trying a wheelchair out for a whole week (ua-cam.com/video/jwqghH7d2IA/v-deo.html), I think i will be getting one! when i do there will definitely be a video on it!
Thank u so much for making this video, iv been in bed half the dya for the last 2 and a half months wirh cfs and am finally gonna try a wheelchair when i go baxk to Uni after Christmas, just so i can see if it helps and if it enables me to go back in person to my course. Xx
I hate using a wheelchair because it feels like I am trapped, it takes away my independence. Whereas as a walker gives me ability to walk rather than taking that away
Did you start using a wheelchair because of Fatigue, or also pain or nuscle weakness? How did you tell family and friends? My cousin started using a wheelchair, but even everybody knew she would need one one day, my uncle thought she was lazy. That is what scares me.
Sister i would like to join for disable people..i am ready to do anything for them like i help to push their wheelchairs and care about them If you have any vacancies for disable people then i would like to serve them as like my own sis/bro / i treated them as my family members.. basically i am from India .. i am willing to do for disable ones
I’m trying to convince myself utilize mobility aids more and I resonate so much with why you were so emotional about it all. I often reflect on how when I do use my cane or don’t default to being upright or putting stress on my body. Thank you for sharing this with us all. I’m sending it to my family to further explain it all. 🥹
Thank you for watching my video!
Are you interested in seeing more wheelchair focused content in the future??
Absolutely 👌
Yeah i would like to watch your upcoming videos
Yes for sure :) I think it will also help break down the stereotyping of wheelchairs such as ambulatory wheelchair users, the benefits of having/using a wheelchair, using a wheelchair when you have an invisible illness/disability etc.
@@AGirlCalledNaomi thanks
Yes I am interested in.
I put off using a wheelchair for well over 10 years and let me tell you- now I wonder how I waited so very long to get back to my life.
watching someone be this open about their anxiety was really wonderful
I’m so glad!
I'm doing basically the exact same thing tomorrow, and seeing someone else talk through the process and emotions is helping me feel less anxious about it. Thanks for posting this
I'm so happy to help x
I've just got a wheelchair, and I'm going through the very same feelings right now. I'm absolutely heartbroken that I now need one. Thank you for being genuine and posting your struggles as there aren't many posts like yours. The majority are sort of "accept it, adapt n get on with it" but some of us just can't accept we need one.
I'm thinking about using a wheelchair for the first time at a museum this weekend and I'm pretty worried. I would be using a manual wheelchair from the museum which would require someone pushing me and I don't know if I'm comfortable feeling that vulnerable with someone. I mean allowing someone to control my movement feels like a big deal. I also just feel like it would be a burden to that person. I'm just glad I could hear from other people with similar struggles. Thank you
You can do this sweetie
I feel we go through stages..at first you noticed every single person looking,you feel embarrassed and the attention is overwhelming.
Then you realise all the looks don’t matter..
I remember at the beginning I felt so much anxiety when my friend offered to wheel me around a vegan festival Or my mum getting a shopping chair.Sheer panic..
However..the more you use it the more comfortable you will feel.
The wheelchair is a life line for people like us..it took time and it’s not easy at first emotionally BUT this is our life,our disability and saving energy is key.
You can do this!
Yay!
I’m soooo glad you enjoyed yourself..be very proud of yourself.
You’re a strong lady and you will find yourself not thinking about it as much.
I’ve started to crack jokes..a man asked why I was in the chair and I said ‘Oh it’s from a shark attack’ he said ‘Wth’ I said ‘ Only kidding but it sounds cooler doesn’t it’
He laughed his socks off..and then we spoke in detail about our illness.
Also..If you ever go to Cornwall they have beach wheelchairs there,their amazing due to the distance of most beaches.
I just want to hug you and tell you..you got this girl!im routing for you!
awww! thank you so much! this is such a nice message! I'm becoming more comfortable with using a chair but I definitely have a way to go!! saving energy is so important fot me and i dont know why it took so long for me to realise that a wheel chair is the perfect energy saving device!! hahah! i might say that next time some one asks!!
@@ElinorBrown It took me some time as well,everyone is different tho but don’t be too hard on yourself.Onwards and Upwards 😊
Love your walking aid btw,very nice 👌
Can I just say how lovely it is to see someone being real and showing your anxious thoughts on camera. I’ve only just started watching your videos (I have EDS not CFS/ME) but I find you a really helpful, real person to watch. Thank you for your videos!
Awww! Thank you so much, I try really hard to be real in my videos! I’m so glad I can help a little 💜💜
Thank you for speaking so openly. Much of what you said is exactly what I think about in my own life. I'm still undiagnosed, but have been sick for 5 years.
A lot of what holds me back is the feeling of "Am I really bad enough to need it?" Because it's only on about half of days, I can't do anything more than basic daily functioning & classes. I also worry about bringing it up to my doctors or my family and them invalidating me. Or people who know me seeing me differently.
But I also feel like it could allow me more freedom. I could go out with my friends if I knew I could sit when I needed to or roll if my legs stop working. I could wait in line at the store. It's hard to think something could help me but feel held back by external factors. And I really appreciate hearing that I'm not alone in that.
The worry about whether I was sick 'enough' was a big issue for me for a long time!! But if it will help, even a little, even just sometimes then it would be beneficial and therefore it is bad 'enough'.
I know how scary it is to say you want a mobility aid, it was terrifying for me but i got a good reaction from almost everybody!! not everybody have the same experience but i'm sure that you'll be able to find at least a couple of people who will be on your side!! (maybe friends?)
It's so worth it!! I've done things with friends that i just couldn't have done without it!!
Reading this has really made me feel a lot less alone. I have chronic pain and fatigue but no diagnosis, and getting around is really hard and takes a lot out of me. But I'm worried that I'm not "disabled enough". I know that's not a thing, but I just feel like I'm overreacting. I know some kind of mobility aid would help me, but much like you I'm worried that I'll get told I don't need it. I don't want to risk asking for help just to get invalidated. But I can barely leave the house. Going out of the house for about an hour and a half, two days in a row, not even doing much, got me stuck in bed for a couple days.
I don't know what to do
Thanks for sharing. It is exactly what goes on in my mind- I guess it is nearly time for me to get a wheelchair, but I fear being looked at in public, asking for help, mountains, and feeling guilty about just asking for a wheelchair prescription.
Hi Elinor, an Ellinor here! I am thinking of getting a wheelchair too, and this has helped me so much! Thank you for sharing your experience!🤍🤍
your videos are so comforting to me i could cry! i’m a 21 year old guy, i’m about to start a teaching career, but i’ve got
more and more ill and confused in the past few months until i ended up in hospital with heart palpitations. i am now realising i have M.E .
it doesn’t feel fair :( and it’s both scary and so frustrating because i’m terrified i’m just going to get more ill, meanwhile my parents are in denial about the seriousness of this condition and how ill i am rn, they think going to bed earlier would help me as if i don’t have to spend all day resting anyway. i’m really glad i found your channel, thank you 💙
I'm so happy to create comforting content!! I'm sorry everything is really hard for you at the moment, and the people around you aren't very understanding but hopefully they will begin to understand more as time goes on!!
Proud of you! Its hard to chose something so visible and that will bring so many questions - especially from those who normally see you on your feet - but using a chair can allow you to do SO much more and really experience the world again. When I finally started using a wheelchair I wished I had just given in sooner because it would have allowed me to do so much more that I missed out on because I couldn't keep up or stand long enough.
Awww Thankyou! I’m beginning to realise this, I always thought it was so uncomfortable to be looked at or asked questions but it’s a lot better than not being able to do things or doing things in pain! 💜
I am looking at getting a wheel chair so I can get out of this bed. Thank you for posting this.
I bought a wheelchair today after realising that using my crutches on my bad leg days was making walking and essentially dragging my heavy legs around was exerting my energy in a way that wasn't worth it, and it's the fastest I've moved in weeks. I'm honestly thrilled and scared at the same time. Everyone who's seen me struggling to walk has said this will be a brilliant step to getting my independence back, but I'm more worried about how people who haven't seen me in PEM or on bad leg days will react if they see me in the chair
I'm so happy for you!! It is scary to anticipate what people think but you can di it and whether it works for you is the most important thing!! I recently bought my own, theres a new video all about it if you are interested!!
My chair has given me more opportunities to join in days out. To going shopping and getting more value out of life.
I love your housemates rainbow dress. I have M.E (and some other illnesses) and I use a wheelchair; I'm an ambulatory wheelchair user. I use my wheelchair whenever I go out otherwise I wouldn't be able to leave the house and I am so grateful to have my wheelchair. I can understand the social anxiety especially when people ask me things like ‘what’s wrong with your legs’ or ‘was you in a car crash’ and things like that - my legs are fine it’s just the rest of my body, brain, genes and collagen that is faulty but that’s a bit to complex to say to people when they ask me so I generally say that I can’t walk very well or something along those lines. It was hard at first when I first started to use my wheelchair but now I see so many benefits that my wheelchair gives me in allowing me to be able to leave the house when I'm well enough. My wheelchair helps me out so much and it reduces my PEM/PENE as well as pain and fatigue levels. PS: Just seen the end of your video, I'd defiantly speak with your GP about being referred to wheelchair services. My wheelchair is provided to me by the NHS and I just needed a supporting letter from my neurologist.
I’ll let her know! It is scary but I think I can get used to it! Inaccessibility must be so frustrating! If I decide I would benefit from having one permanently I will definitely discuss it with my GP.
@@ElinorBrown Thanks :) When I first started to use a walking stick I hated how the older ladies used to treat me on the bus. I received comments when I asked for the priority seat to be vacated of their bags and they'd tell me to sit upstairs or that I was 'young enough to stand' or the "looks" they give me or rolling their eyes or tutting or numbing under their breath about the situation. It got to the point where sometimes I'd get off the bus early to cry and eventually I stopped using the bus. Assistance on the trains was great though apart from the time when there was some miscommunication and the train left with me still on it but they was great and they got me off at the next stop and provided me with a taxi all the way home! Plus whenever their was a replacement coach service they'd provide me with a taxi then too. That was quite a few years ago now and my M.E is now classed as severe and I'm now house/bed bound and I use a wheelchair when I go out on the very odd occasion. I think UA-camrs like yourself and I help demystify what M.E is and how it affects us especially as young adults and also related topics like calling ourselves disabled and using mobility aids. I'd love to see how you get in your journey about the possibility of getting a wheelchair so that you're able to enjoy and participate in events more like the funfair in this video and how it helped your M.E and reduced the payback. In this video it was also interesting to compare your anxieties at the start of the video and then your reflections after at the end.
Please also consider that not all 'mis-uses' of disabled parking bays are actually mis-uses. My dad has a blue badge and whilst I don't have one myself, my ME (and a few other conditions) means that it's often just as helpful for me as it is for him as there are days when neither of us can walk far or might need to return back to the car quickly, however because we don't always look unwell (even if we feel it) we get comments from people all the time calling us nasty names for using a disabled bay. You never know if someone has an invisible disability or not. I know that probably wasn't what you were referring too and you probably know this already but I just wanted to put that out there! :)
@@annathirlaway1242 I'm sorry if I caused offence in my comment; I didn't mean to at all and I've changed my comment. I'm an ambulatory wheelchair user and I got my blue badge before I was provided with a wheelchair and I can relate to the challenges that having an invisible illness poses inc when using my blue badge. I have M.E myself and I know that all illnesses are unique to that person even those that share the same illness. In the past I received a lot of negativity from the public such as when I used to use the bus and needed a priority seat or even now when people see me talking a few steps out of the car to sit in my wheelchair or even when people see my legs moving when I'm sat in my wheelchair. More awareness of invisible disabilities is much needed as some comments I've received for having an invisible illness is really hurtful. I'm glad of the new changes to the blue badge scheme to allow people with invisible disabilities/illnesses to receive blue badges; more parking bays are much needed though. When I spoke about the misuse I was recalling incidences like for example where one time a couple had parked in a blue badge parking bay as they where buying a large TV. You and your dad have every right to use those parking bays and I hope if you wish to are successful in getting your own blue badge to make life just that little bit easier for you. Again, sorry if I caused offence. Naomi
@@AGirlCalledNaomi you didn't cause offence, don't worry! I just always like to take time to raise awareness about it as you never know who could be reading :) my dad has had his for years as he has a physical disability (although he can still technically walk so does not look how most people assume a disabled person to look) however I've been told I would likely not qualify for one despite being almost bed bound for most of my teens! I haven't persued it anymore because I know there are people who need it more than me but it does make my dad carrying one more of a 'blessing' (sounds a weird way to look at it) for those rough days. I do agree though, people don't always see the seriousness of using them properly which is frustrating, I just like to give people using them the benefit of the doubt as often as I can, as with disabled toilets etc as you never know! Thank you for clarifying though 😊
I added this to my public Playlist - You are NOT alone
Thank you for sharing and showing someone else that they are not alone. ❤
Oh darling that was an emotional rollercoaster. It was nice to see you be so honest and open about how you feel.
It's really hard at first. It hurts a lot at first, but it gets better I promise. I watched lots of videos of people in wheelchairs living fun lives when I first got sick, it started to be seen as a kind of freedom for me because things I wouldn't be able to do on my own two legs were now more possible. I like watching wheelsnoheels she is very upbeat and makes good content about living as a wheelchair user. If you are thinking about using a wheelchair more often I would invest in getting your own personal wheelchair. The hospital wheelchairs are cheap but they are super difficult to push yourself in. You are doing great. it takes lots of courage to use the mobility aids you need, this will open up lots of opportunities and new experiences you wouldn't be able to do with your legs. You will be able to go out for long periods with able bodied friends and family and keep up without the pain or fatigue. even simple things like going on a stroll in the park you will be able to do and it makes a big difference in quality of life. It's ok to cry and it gets better don't worry it will be ok.
Thank you so much for posting this comment. Reading that has really helped me
I have chronic pain and fatigue and I haven't been able to do pretty much anything for months. I can barely leave the house without it causing me to be stuck in bed the next day, or next few days. Reading your comment helped me realize that I'm allowed to ask for help, and I deserve support
So thank you 💙
thank you for making this video ;~; i've had so much of the same anxiety about using a wheelchair just out and about---it feels so embarassing for some reason plus my campus is very hilly. anyway this brought me so much joy and i really hope i can get over my fear a little more next time
Thank you. I'm going through this same emotional process right now. It helps to know I'm not alone.
Thank you for this video. I am feeling like this with using a rollator for the first time. Thank you for posting this.
This video is exactly what I need my body is not working so good right now and next year I might buy a wheelchair. Thank you Ms. Brown
Glad it was helpful!
I think that it is so brave of you not only taking the step but also documenting it and sharing it with us. I have FMS (and all its friends) and I have a really hard time trying to get past my pride of "I have managed so far without, so why can't I now?" Yes I have managed, but as you said, I have said no to so many things. A few years ago I injured my knee so I had to go to a festival with a wheelchair and my goodness it was so much better (ignoring accessibility issues for now.) I could walk that evening and the day after. It is a huge step, one I am still hesitant to make. Mostly because I am afraid to get into confrontations or mean looks if I get up. I don't look sick so therefore I'm not sick is many a stranger's argument. I must say, hearing my own thoughts spoken out loud by someone else hits home. Seriously reevaluating some choices I made. Thank you for your honesty and take my L&S. Love from across the pond 🇳🇱
Its a really tricky decision, but i have my own one now and it was the right thing to do for me, i havent had any bad situations from getting out of the wheelchair, no comments or anything!!
Well done on getting in the chair! The fact you were anxious beforehand and weren’t sure you were gunna be able to do it and got in the chair is such an achievement!
Also love the fact at the beginning of your video you had angry octopus on and by the end of the video the octopus was happy!
Thank you so much! It was a big achievement 💜
Thank you so much, this helped me get the courage to try and use a wheelchair as well. I hope you post more! 😊💕
I know what you are going through , I have fibromyalgia , I am 68 and I wanted to go on holiday abroad but I could not stand in the long queues at the airport, so I received the help offered from the airline I was flying with . It was a horrible experience , not from the airline staff but from the able bodied people at the airport , the intense dirty looks from them was unbelievable!! most people with fibromyagia don't look disabled so maybe that was the reason but it was a horrible feeling I don't think I could go through that again, it spoilt what could have been a lovely holiday .
You can do this! Do not worry about what others think of you. The only thing that matters is that you keep takeing care of yourself !
so true!!
I’m 18 and just ordered my first wheelchair and I’m terrified my disability is hidden so I’m so scared of going out in public despite knowing it will help so much and I’ll be able to go out more.
I'm considering renting one out for the day so I can fully enjoy Comic-Con, it really is daunting.
that sounds like a great idea!
@@ElinorBrown I've had a lot of encouragement from friends and I found this video was also very encouraging. My best mate told me they'd come over a few days before comic con to help me navigate travelling in my city so I could have some practice so I think I'd rent one out for the week.
Thank you for this video. I appreciate the vulnerability & honesty. I can relate so much. I have horrible social anxiety. The only thing that gets me out of my house is my ability to blend in quietly & go mostly unnoticed. The thought of people looking at me is enough to keep me inside. I also don’t like questions. Or feeling like I have to justify & explain myself. I’m the one that commented on your other video about your stick about me being terrified of using mine. 🤣 I’m so proud of you for this big step! :)
Thankyou so much! It was pretty scary but i got used to it pretty fast!!
I have cfs myself, and I've been wondering about maybe using a wheelchair, but it scares me too. This video really helped though, thanks
I'm so glad I can help a little!!
I only just come across your you tube channel & it breaks my heart seeing you in tears about using a wheelchair! Because of your chronic illness's your legs are weak so the wheelchair will be your legs! I wear a leg brace & people call out "run Forrest run" from the film Forrest gump! Tom hanks wears leg braces in the film! Plus I am profoundly deaf & wear two powerful BTE hearing aids & I keep thinking people are staring! Plus I have an indwelling Foley catheter & leg bag so I worry people will see the bulge of the bag or the bag leaks! Look how much happy you look in your wheelchair! All your friends are having fun with you! So please put your health first & pride second! 💜💜💜
I have gotten a lot more comfortable with it now!
@@ElinorBrown I loved the end of the video when you decided you need a wheelchair! Let people stare! It's your life & nobody will think any less of you! It's not your fault you have a chronic illness! Your bound to get the idiots that will say there does not look much wrong with you & it's in the mind! Plus any love interest will see past the wheelchair & see the real you! I know since making this video you have bought a wheelchair! Nobody will know if it will be for life with new treatments coming out every year! You can pimp the wheelchair up! But one word of caution since wearing My leg brace my leg has gotten weaker! Please be careful if you start using the wheelchair a lot your legs might weaken & you won't walk again even if you wanted too! I think you should get a tissue company to sponsor your video's as I am not afraid to say I cried along with you! 💜💜💜
When I brought my friend with me to his first Pride last year, I convinced myself that the parade wasn't that big of a deal and probably really boring compared to the festival and performances and parties after, so we could just skip it. Because I was weighing standing in the sun for 2 hours, vs being able to do anything else that day. And he said at the end of the night that he really enjoyed it, but wished he had seen the parade and wanted to make sure we were there for the next one.
And I hadn't thought about that in a while, but this video convinced me. I'm going to use a wheelchair at Pride, and stay for the whole thing. And then I started crying a little bit too.
Thank you! I needed this!
So happy for you! I'm also looking into wheelchairs at the moment so I'm definitely interested in more wheelchair-focused content. Wondering if you are looking into electric options, or powerchairs as well? I can't really propel myself in a manual wheelchair and would like to use it without someone else pushing me.
Awww Thank you! I’m honestly not sure, I haven’t looked into it much yet! Maybe I’ll try out both? 💜💜
I would prefer a power-chair myself. I’m a very independent person who hates feeling like a burden. I’d much rather be able to move myself around independently. Long ways from there. I’m not even comfortable with my stick yet.
What scares me is the stare of ppl. The pity. I hate it when ppl feel pity for me.
I am staying at the hospital. Wonderful day yesterday, first summerday, everybody was out in the park. So I took a wheel chair to get out. Was completely normal, as there are many ppl with mobility aids. There were even bedridden ppl in their beds in the park. So it was good. My knees and hip muscles are terribly week, my arms are stronger, so it was fine. I sat in the grass and sketched and felt- relieved.
I’m 13 and this really helped me feel a lot more seen ❤️ thank you !
I'm so glad!
so so proud of you for taking this step towards getting what you need ! Glad it was a positive experience. Loved this video.💕
Awww thank you so much 💕
This is so helpfull! Thank you for sharing your experience!! I am not diagnosed with anything still trying to convince my doctor its not just my weight. I have constant excruciating pain in both my hips which makes walking even with a stick very difficult been trying to decide on wether to get a wheelchair then tonight my next door neighbour, who also has mobility issues, gave me a wheelchair and im so anxious (and feeling a little defeated) but hopefull that maybe i can go do more things now and get out of the house 😐
urghhh!! I’ve heard so many people say doctors just won’t look past weight, it’s so unfair!! hopefully you can find a good doctor, that considers everything you’re experiencing!! that’s great! hope it helps!
I just became an ambulatory wheelchair user and I am struggling with feeling more validated having bought my wheelchair off of Amazon vs a custom made one. I see soooo many custom wheelchairs and I only have one from Amazon.
It's still valid!! You've bought whats right for you!! I have my own one now and it certainly isn't custom!! (i have a video about it if you are interested)
Is it okay to have a wheelchair before a cane if I think one would help me more
the thing that will help you the most is the thing you should get!
good that you felt you could talk about it, I am a member of access and inclusion committees, and have Autism, not your disability, but from my observations about these issues, Bugger the "NORMALS " just think of the end game, you NEED this to get out and integrate into the community, you definitely DON'T need to be a para or quad to use one!!; pain and fatigue is something the world has to accept and live with, sometimes people can walk, stand etc, and for some people they just can not, so NEED these tools to further their capacity to do things, and it is SOCIETY that needs to change it's thinking, Not you.
I have only been diagnosed with me/cfs and fibromyalgia for a yr. Ive had 3 surgeries on my feet and legs in the last 3yrs. I know your fear, i walk with a stick. Im pretty housebound. Its because of peoples perceptions that im afraid to use one. I suffer from vestibular migraines and other co morbidities as well. My anxiety levels are through the roof when i go anywhere.
did u ever end up purchasing a wheelchair? and if you did could u do like an update video? i’m so proud and happy for you!
I haven't got one yet, but after trying a wheelchair out for a whole week (ua-cam.com/video/jwqghH7d2IA/v-deo.html), I think i will be getting one! when i do there will definitely be a video on it!
Thank u so much for making this video, iv been in bed half the dya for the last 2 and a half months wirh cfs and am finally gonna try a wheelchair when i go baxk to Uni after Christmas, just so i can see if it helps and if it enables me to go back in person to my course. Xx
I hate using a wheelchair because it feels like I am trapped, it takes away my independence. Whereas as a walker gives me ability to walk rather than taking that away
Did you start using a wheelchair because of Fatigue, or also pain or nuscle weakness? How did you tell family and friends? My cousin started using a wheelchair, but even everybody knew she would need one one day, my uncle thought she was lazy. That is what scares me.
Put on distress and go. Cheers!
Girl, get a zinger chair!!!
Sister i would like to join for disable people..i am ready to do anything for them like i help to push their wheelchairs and care about them
If you have any vacancies for disable people then i would like to serve them as like my own sis/bro / i treated them as my family members.. basically i am from India .. i am willing to do for disable ones
I don’t understand what you mean?
@@ElinorBrown it means i wanna care about disable people.. it's like helper for disable ones. It's one of my goal sis
thank you! 🤍🩵
I’m trying to convince myself utilize mobility aids more and I resonate so much with why you were so emotional about it all. I often reflect on how when I do use my cane or don’t default to being upright or putting stress on my body. Thank you for sharing this with us all. I’m sending it to my family to further explain it all. 🥹
Its scary but you got this!!!