What you said about the cane being a signal to others that you need accommodations is SO true. I don’t always need mine, but sometimes I take it with me just so that people will understand. My latest mobility aid purchase is a byACRE rollator, and it’s awesome! It’s a really good midpoint between my scooter and my cane. Sometimes taking the scooter with me is just too much. But with the rollator, it helps with balance/fatigue/pain, plus I always have a chair when I need one, plus if I let go of it to pick something up when I’m shopping, it doesn’t fall on the ground!
Hi Elinor, seems Bath University is very helpful and supportiv if you are a disabled student. But also frustrating and emotional challenging to notice that your illness is so bad, that accomodations are not helpful enough. Thanks for sharing your story. I have ME/CFS, too, and feel less isolated. Last week finally my first and customized wheelchair with E-support arrived 🎉🎉🎉. Now I have to adapt, be brave outside and learn how to use this thing. I was only once outside (because Covid hit me), but have had a range of reactions from people. Nice and bad stuff....
Thank you for sharing 💜 my story is very similar and i have been following your videos since about December 2022 when I also got diagnosed. Your videos particularly about mobility aids have enabled me to use a walking stick and wheelchair. I still struggle with self image of using them and being 'disabled' but your videos give me encouragment ❤ thank you 🤗 P. S. Do you know many people in their 20s and 30s with ME? I can't really find any even within my local ME community/charity and am feeling really isolated as a result 🙃
It can be hard to find people, I know a couple in real life through coincidence, but mainly I know of people through UA-cam & Instagram. if you are needed real life friends casting the net wider to people with other conditions can help because they are easier to find but still understand a lot of our experiences!!
@@ElinorBrownthanks, I've been thinking of reaching out to other conditions but just don't know where to start tbh. Any helpful tips appreciated xx (right now I'm trying to go to a local crafting club but am worried it's going to be full of retirees only (not that I have a thing against them but just long for someone my age) and wonder how many such places I'd have to visit before meeting a potential friend... 🙃😔
@@Jules-zw7iuOh yes, in my area there are a lot of programms for elderly people to be not alone (playing games, knitting, book-clubs etc.). I would like to go to such activities with low threshold, but for younger or middle aged people. But there is no offer for my agegroup.
This came at the right time. I had an accident last year, which has left me with reduced mobility. I use a stick for walking and request a chair in almost every shop and venue I visit. People often treat you terribly when you're young and disabled (I'm only 33) as if only older people have the right. Thank you for raising awareness and sharing your story ❤ ps you're beautiful
I'm diabetic and disabled myself. And I've dealt with people treating me horribly especially when you're young. I hate having to answer the same redundant questions over and over again. Using a cane and a wheelchair when needed helps sooo much on neuropathic pain days.
Ironically, the time when I would really have loved to use a mobility aid, was back when I felt the worst. That was the year before I got diagnosed. Back then, when I was still in and out doing various tests in the hospital, which is a huge place, filled with long long corridors that were exhausting for me, the people working there were not very... let's say sympathetic to the fact that I was feeling miserable, whilst looking completely normal. I remember walking past the wheelchairs by the lobby, looking at them like "oh how nice that would be" but then deciding against taking one because A. I thought it would look weird to everyone in the area if I did (a seemingly healthy person who walked in on her own sitting down in a wheelchair) and B. the doctors would probably think I was an even bigger hypochondriac than they already thought I was... Thankfully, finally getting my ME diagnosis has given me access to medication that has helped me, and I feel better now than I have in years (I won't say which one though, I'm not a doctor and what works for me might not work for you). I now have the energy to go to work every day, and still do things when I get home, to take long walks and do somewhat demanding household work like hoovering or washing the windows. I still remember what it was like before though, and I am thankful for every day that I am feeling well. My thoughts are with you. I wish you the very best and I am glad you have found things that help you feel better 💜
I absolutely feel you when you said that having the walking stick gives more confidence in asking for what you need, a lot of times I don’t even leave home bc I’m still not fully comfortable with it and also if I’m seen without my stick maybe they think I’m lying bc I’m young
I just found your videos 😅. And I wanted to say I love your style and how your mobility aids just flow with everything. I agree with what you said about how your mobility aids don't always have to look medical. Since I'm still young just turned 40. And I like to dress up when I can. I love the fact that i can have my mobility aids and still feel stylish and confident. Tbh, society makes fun of me less when I have stylish mobility aids. They tend to respect my disabilities better. And don't just see me as a charity case.. Or treat me as if I'm faking everything. Even bars hold my mobility aids for me sooo they don't get lost or stolen 😅💜
It was really good that your mother suggested that you get a wheelchair because several of my friends have suggested that I get a wheelchair because they can see how much I Struggle with walking, how much I am in pain and that I keep falling down. So I am really worried how I am going to break it to my parents as I have a hard time getting out to do stuff without any mobility aids
Totally understand about the stick. I have one and fighting against a wheelchair even tho i need one. Its hard to come tobterms with the label of disabled. And you are only young. I still hate saying im ill but getting better at it. You keep going and look after younthats wat matters x
Quite a while back I did a degree with the OU. As I had some mental problems at that time when it was time to choose a university for summer school I had a list of universities that catered for people with disablities and I choose Bath. At that time I was often very tired and weak. I had a room right in the centre so i didn't have to walk very far or use steps and I was actually really jealous of the students I saw whizzing around in wheel chairs! Later I found out I was wheat intolerant and once I cut that out I was so much better. I do have fibromylagia though which has worsened as I've got older so now I'm in my 70s I do use a wheelchair.
I've been considering getting a cane for my chronic pain. I have several disabilities. the problem is most days I'm great. I can run a 5k, do teakwondo. But then, some days, I feel like I'm dying pain, POTs, and fatigue. I really don't know what to do sometimes other than just laze around all day and catch up on work later.
@ElinorBrown oh! Okay! Thank you. Is stability a problem with chronic fatigue syndrome? I guess being extremely exhausted makes you a bit less stable. Sorry if I'm asking too many questions. I just really want to understand. I guess I won't ever truly understand since im not you.
Hello, everyone. Umm, I don't know how to say this, but I'm not in the worst condition like you. I have been suffering from dystonia since 2020, and it's been very difficult for me to write and grasp anything, like a cup or a glass. I couldn't even grab the PC mouse, and I can't even hold my phone. It's very difficult to live like this. I used to play guitar, but my dystonia doesn't allow me to play it. Every hobby I loved has been taken away from me by dystonia. I failed my exam because it's very difficult to write on paper; I can't grip a pen like other people do. I'm feeling depressed and sad. After all of this, I just want to accept my condition. Please, everyone, guide me and help me. It's very difficult to ask for help. (Apologies for my bad English.)
What you said about the cane being a signal to others that you need accommodations is SO true. I don’t always need mine, but sometimes I take it with me just so that people will understand.
My latest mobility aid purchase is a byACRE rollator, and it’s awesome! It’s a really good midpoint between my scooter and my cane. Sometimes taking the scooter with me is just too much. But with the rollator, it helps with balance/fatigue/pain, plus I always have a chair when I need one, plus if I let go of it to pick something up when I’m shopping, it doesn’t fall on the ground!
You’ve always been a step or two ahead of mine so thanks so much for sharing your story. Following you has helped me navigate my own situation 💜
I'm so glad!
💜 it’s obviously been a long journey- amazing that you made it through 🎉
Hi Elinor, seems Bath University is very helpful and supportiv if you are a disabled student. But also frustrating and emotional challenging to notice that your illness is so bad, that accomodations are not helpful enough.
Thanks for sharing your story. I have ME/CFS, too, and feel less isolated.
Last week finally my first and customized wheelchair with E-support arrived 🎉🎉🎉. Now I have to adapt, be brave outside and learn how to use this thing. I was only once outside (because Covid hit me), but have had a range of reactions from people. Nice and bad stuff....
you got this!!!
This is so tough to watch and so true with so many people that have an invisible illness 💜
Thank you for sharing 💜 my story is very similar and i have been following your videos since about December 2022 when I also got diagnosed. Your videos particularly about mobility aids have enabled me to use a walking stick and wheelchair. I still struggle with self image of using them and being 'disabled' but your videos give me encouragment ❤ thank you 🤗
P. S. Do you know many people in their 20s and 30s with ME? I can't really find any even within my local ME community/charity and am feeling really isolated as a result 🙃
I've found Instagram really helpful, and that's also helped me with mobility aids alongside these videos
It can be hard to find people, I know a couple in real life through coincidence, but mainly I know of people through UA-cam & Instagram.
if you are needed real life friends casting the net wider to people with other conditions can help because they are easier to find but still understand a lot of our experiences!!
@@ElinorBrownthanks, I've been thinking of reaching out to other conditions but just don't know where to start tbh. Any helpful tips appreciated xx (right now I'm trying to go to a local crafting club but am worried it's going to be full of retirees only (not that I have a thing against them but just long for someone my age) and wonder how many such places I'd have to visit before meeting a potential friend... 🙃😔
@@Jules-zw7iuOh yes, in my area there are a lot of programms for elderly people to be not alone (playing games, knitting, book-clubs etc.). I would like to go to such activities with low threshold, but for younger or middle aged people. But there is no offer for my agegroup.
@@beknight9399exactly! Maybe we need to reclaim that social space somehow! 😄😅😉👊
This came at the right time. I had an accident last year, which has left me with reduced mobility. I use a stick for walking and request a chair in almost every shop and venue I visit. People often treat you terribly when you're young and disabled (I'm only 33) as if only older people have the right. Thank you for raising awareness and sharing your story ❤ ps you're beautiful
I'm diabetic and disabled myself. And I've dealt with people treating me horribly especially when you're young. I hate having to answer the same redundant questions over and over again. Using a cane and a wheelchair when needed helps sooo much on neuropathic pain days.
Ironically, the time when I would really have loved to use a mobility aid, was back when I felt the worst. That was the year before I got diagnosed. Back then, when I was still in and out doing various tests in the hospital, which is a huge place, filled with long long corridors that were exhausting for me, the people working there were not very... let's say sympathetic to the fact that I was feeling miserable, whilst looking completely normal. I remember walking past the wheelchairs by the lobby, looking at them like "oh how nice that would be" but then deciding against taking one because A. I thought it would look weird to everyone in the area if I did (a seemingly healthy person who walked in on her own sitting down in a wheelchair) and B. the doctors would probably think I was an even bigger hypochondriac than they already thought I was...
Thankfully, finally getting my ME diagnosis has given me access to medication that has helped me, and I feel better now than I have in years (I won't say which one though, I'm not a doctor and what works for me might not work for you). I now have the energy to go to work every day, and still do things when I get home, to take long walks and do somewhat demanding household work like hoovering or washing the windows. I still remember what it was like before though, and I am thankful for every day that I am feeling well. My thoughts are with you. I wish you the very best and I am glad you have found things that help you feel better 💜
that’s great! so glad you’re doing so well!
I absolutely feel you when you said that having the walking stick gives more confidence in asking for what you need, a lot of times I don’t even leave home bc I’m still not fully comfortable with it and also if I’m seen without my stick maybe they think I’m lying bc I’m young
You look so confident in this video and I love your fashion! You inspired to try out a cane too. For my CFS. Love. Ester
Thanks for sharing, it's always great to listen to your stories 💜
Thanks for listening
I just found your videos 😅. And I wanted to say I love your style and how your mobility aids just flow with everything. I agree with what you said about how your mobility aids don't always have to look medical. Since I'm still young just turned 40. And I like to dress up when I can. I love the fact that i can have my mobility aids and still feel stylish and confident. Tbh, society makes fun of me less when I have stylish mobility aids. They tend to respect my disabilities better. And don't just see me as a charity case.. Or treat me as if I'm faking everything. Even bars hold my mobility aids for me sooo they don't get lost or stolen 😅💜
It was really good that your mother suggested that you get a wheelchair because several of my friends have suggested that I get a wheelchair because they can see how much I Struggle with walking, how much I am in pain and that I keep falling down. So I am really worried how I am going to break it to my parents as I have a hard time getting out to do stuff without any mobility aids
Thank-you so much for sharing! 💜
Thanks for watching!
Totally understand about the stick. I have one and fighting against a wheelchair even tho i need one. Its hard to come tobterms with the label of disabled. And you are only young. I still hate saying im ill but getting better at it. You keep going and look after younthats wat matters x
💜 Thank you for sharing.
So inspired by this energy
Quite a while back I did a degree with the OU. As I had some mental problems at that time when it was time to choose a university for summer school I had a list of universities that catered for people with disablities and I choose Bath. At that time I was often very tired and weak. I had a room right in the centre so i didn't have to walk very far or use steps and I was actually really jealous of the students I saw whizzing around in wheel chairs! Later I found out I was wheat intolerant and once I cut that out I was so much better. I do have fibromylagia though which has worsened as I've got older so now I'm in my 70s I do use a wheelchair.
I don't understand how a cane would help with chronic fatigue syndrome? This is a genuine question. Please help me.
Like, does it make you less tired? I feel like it might make you more tired.
I've been considering getting a cane for my chronic pain. I have several disabilities. the problem is most days I'm great. I can run a 5k, do teakwondo. But then, some days, I feel like I'm dying pain, POTs, and fatigue. I really don't know what to do sometimes other than just laze around all day and catch up on work later.
It doesn’t make me less tired, it gives me stability when I get tired, and also signals to other people that I’m disabled.
@ElinorBrown oh! Okay! Thank you. Is stability a problem with chronic fatigue syndrome? I guess being extremely exhausted makes you a bit less stable.
Sorry if I'm asking too many questions. I just really want to understand. I guess I won't ever truly understand since im not you.
God bless 😊
💜
Your beutiful babe u got amazing energy x❤
Hello, everyone. Umm, I don't know how to say this, but I'm not in the worst condition like you. I have been suffering from dystonia since 2020, and it's been very difficult for me to write and grasp anything, like a cup or a glass. I couldn't even grab the PC mouse, and I can't even hold my phone. It's very difficult to live like this. I used to play guitar, but my dystonia doesn't allow me to play it. Every hobby I loved has been taken away from me by dystonia. I failed my exam because it's very difficult to write on paper; I can't grip a pen like other people do. I'm feeling depressed and sad.
After all of this, I just want to accept my condition. Please, everyone, guide me and help me. It's very difficult to ask for help. (Apologies for my bad English.)
Search Dr Farias, he has a program to help people with Dystonia. I'm sorry you're struggling ❤
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