My Name is Elinor and I am a 25 year old sociology student in the UK who has been living with diagnosed chronic fatigue syndrome (CFS/ME) since 2015. I also have Anxiety and Depression, so my life is also influenced by that.
I hope that my channel will be able to educate people with no experience of the illness and make those experiencing chronic illness feel less alone. When I was 16/17 I was really struggling with life and desperately wanted to find a KZread channel that I related to to, I hope to be that for someone!
This Channel is all about my CHRONIC ILLNESS with a little bit of lifestyle mixed in !
New Videos go live most Fridays !!
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Hello Elinor. I'm so sorry you are dealing with this. I have Ehlers Danlose Syndrome. They have some common symptoms, including complete exhaustion and chronic pain. I'm 66 and just found out a few years ago why I had health issues my whole life. I had to go on disability in 2011 due to being wiped out. I slept til 3pm on my 2 days off. I wish you well, sending soft hugs and my heart. ❤
Thank u so much for this video. I bought my 1st transit wheelchair this week (although I have used some before). I'm so nervous about going out on bumps, slopes, public transport etc. I know it will take practice. But I'm excited to finally get outside again, even a little bit.
OMIGOD THE NECK CRACKING THING
this really convinces me to get a wheelchair, also due to chronic fatigue possibly caused by MS. I have my cane and I'm going to ask my doctor about getting forearm crutches for more support and mobility, but ive been considering a wheelchair for a good bit ESPECIALLY since my last flare up where I literally was basically housebound while trying to get through a semester of college (wherein I missed most of my classes and finals were ROUGH). Im out of my flare now (presumably) since about the last couple weeks of school, but my fatigue and weakness are much worse, and while on vacay to see my partner I slept through a good bit of it or was unable to move from doing honestly pretty light activities. I still work on getting past the feeling like this is, like many believe, me giving up, because its NOT. So yes, if you sympathize with these things like in the video, definitely consider it. even if you work your way into it like I plan to in a way with getting crutches first!! ALSO IF YOU HAVE MEDS, T A K E T H E M *BONKS YOU ON THE NOGGIN GENTLY*
I happen to have about 7 to 9 canes around my house and then some of them have rhinestones on them. Some of them are clear see-through. They’re in all colors imaginable and I personally enjoy them a lot when I can get out of my wheelchair and use them. Oh, and by the way, I’m 79 years old and I’m still going strong. And for all of you, younger folks, I am responsible for what I say and do, I’m responsible for what I think, I am not responsible for what you think about it.
I happen to have about 7 to 9 canes around my house and then some of them have rhinestones on them. Some of them are clear see-through. They’re in all colors imaginable and I personally enjoy them a lot when I can get out of my wheelchair and use them. Oh, and by the way, I’m 79 years old and I’m still going strong.
Thank you so much for sharing !❤ I'm in the process of being diagnosed, but it's a bit tricky, cause I already am diagnosed with PTSD and IBS, and both of them could potentially be causing my fatigue. I hope I'll get help for my problems with fatigue tho, being exhausted all the time is driving me crazy. Glad to hear that you live with someone, for me, that has been a big help. Don't think I would have managed to live by my self to be honest.
Thank you Elinor, you are very brave to video this. I am over 10 years in with Lyme. Learning to pace yourself is so important. As is learning to say no. Having a hobby helps. I do some craft which I can do in bed and rest when I need to. That way I feel I have achieved something. A computer stand to rest the book on helps. Not overdoing it on good days is the secret ❤
I love this video, thankyou. I'm now in the scary place where I have to get one and I have all these silly fears, the same as I did when I had to buy my first walking stick. I feel like I've failed knowing I have to get one. Silly really
They will only understand when they have it themselves. I have had Chronic head pain and disability for 22 years, I don’t expect it now.
Ma’am, I just wanted to let you know that the wheelchair doesn’t define you. I used to think that I was unworthy of being in a relationship simply because I depended on a wheelchair, but the wheelchair doesn’t define you you see a little trans a bit like mountain, climbing, you reach that goal, astray, and you reach the top And then afterward you can just take the zip cord and go down. I am a special Olympic athlete and I use a wheelchair. I want to use a manual wheelchair in my condition progress never forget the wheelchair is a tool that helps you to be the best you can be. And depending on how many hours a day you use a wheelchair and what condition you use it for you may eventually need a custom wheelchair but that’s cool too because you can only make it your own pink Cadillac mines pink and black and it till fat and I can elevate my feet And open up a world where I can get around. It has a respirator on it so eventually I can breathe and I’m a Legalshield a Sophie I work from home selling memberships, just remember keep the torch lit and pass the baton in the relay of disabled life, you’re not disabled you’re just different weird
Don't forget to buy the people who helped you dinner or lunch its a nice way to thank them!
are you single
Thank you so much elinor! This makes me feel comforted and seen. I'm texting this from bed, exhausted. I've been missing seeing your videos. How are you doing at the mo? Love, Ester from Amsterdam❤
Personally, I’m less worried about strangers and more worried that my family members’ friends will see me with a mobility aid and be noisy and gossip behind my back because everyone knows everyone in my small home town. I’m also worried how my family would respond to the idea of me using a mobility aid, but that’s a different issue I guess
this looks like a really nice product for someone who needs both a rollator and wheelchair the only problem i see is that to use it as a wheelchair you have to have someone with you which takes away from kinda the whole point of these types of products independence if you are only using it as a rollator you can be independent but if you need the wheelchair you have to have someone to push you
I'm getting a wheelchair for the first time. About 6 months ago, I suffered a spinal injury that made walking extremely difficult for me. I can walk short distances with my walker, but I live in a major city, don't have a car, and have a family. My children are a bit older, but I still want to take them to go do things. I think it's really cool and interesting that we're in wheelchairs for different reasons, but have so many similarities. I've watched a couple of your videos. Walking makes me dizzy and nauseous. My legs are really weak. I start feeling like I'm going to faint. I can walk for about 1/2 a mile at a time, then always come back home and fall asleep. Then I'm sore and exhausted for a few days. I love how we have so many differences and similarities in this community. Watching your videos has really helped me. I felt almost like getting a wheelchair was giving up, because I still have years of physical therapy in my future, and there's even a small chance that the feeling in the lower half of my body could randomly come back one day, but given the injury I had and the way it was treated, that's not very likely. I hoped there for a while, though. But watching your videos has helped me go from a bit depressed about my lack of mobility to being excited about the adventures I can go on, again. It's not the end of my life, I just need a wheelchair so I can live it more easily. Thank you for sharing your story. Your wheelchair is super cute, btw. Everything I have is red and black, and I can't wait to make my wheelchair match myself as well! ❤
I loved this video but please replace the music. My god. I felt like I was being put on hold to speak someone about life insurance.
Another great video! 💖 Thanks for helping me not feel so alone. Also you always look so cute, but I'm totally gushing over that dress! Where can I get one????
Because I have a neo walking stick, it makes me excited, confident, and not embarrassed to use my mobility aid in public. I have been asked about it though. Most that ask questions about my cane are just amazed by it and curious about where I got it from. It definitely is eyecatching because its so unique and pretty from your average medical cane. Most people have never seen one like it. So I love the Neo walking sticks, because its changing the way people think of mobility aids, and just how pretty and cool they can look. Also thank you because you were someone who not only inspired me to actually purchase my first mobility aid but you introduced me into the beautiful Neo Walking stick universe. I didn’t know such pretty canes existed until I saw your video about them.
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!
Thank you very much for this video! I have been disabled for over 20 years. I had a stroke when I was 22, from an inoperable brain tumor, that I was diagnosed with 14 years ago. My life sounds so much like a soap opera. The people don’t want to listen to it. I lost my eyesight completely four years ago, and before I had the equipment, I couldn’t even communicate with anyone. Still, they… even my family said terrible things to me and accused me of lying. They would not listen to me. I like to laugh, and I like to have a good time. I have friends who love me… Life can be good. Once you get away from the able-bodied jerks. Thank you very much for this video. The lives of disabled people are often very bad. Thank you for Making an upbeat video about it. We are allowed to smile! Disability is real. Obviously. Some people have no empathy. Thank you again for the excellent video. Cheers!
Finding someone i can slightly relate to is so nice and you are so pretty
I feel this even just finding a seat on the train the whole journey I feel judged as the old person comes on, woman with baby, it's endless and the times have given up the sit I have regretted it. I have paid for it physically unable to make it to work, late, sick for a couple days after. I feel impostors syndrome and I do try and leave really early but at my pace I am still catching the later busy train
Airport was a nightmare, they kept telling me to run to catch the plane. Uber is expensive. There are times where I do also feel that waiting room stare and I feel I need to look sick to be believed even when I feel my worst I can still look fine on the outside.
Hi, Elinor! Have you checked your B12, iron and vitamin D? I suffer from pernicious anemia, an autoimmune disease that distroys my b12 so I can't absorb it, also it affect other things, like iron. The symptoms can mimic CFS and other neuro conditions, also it gives anxiety and depression. Some people just have chronic b12 deficiency without autoimmune, but symptoms are the same. Maybe you want to look into that, just a thought. Many people are not diagnosed because docs don't look into this
I find that it's a nice cane and if you need it for medical purposes people shouldn't judge anyone who have mobility aids there are able wheelchair users due to other health illnesses they need them to live either way. They just don't get or understand invisible illnesses as we do I'm disabled and I feel that people need to respect anyone doesn't matter if your differently able there are invisible illnesses that oh if they don't see it that it's fake no it's not because chronic illnesses are not always visible. I like colors myself my wheelchair has lots of colors and I think it is nice that you match your mobility Aids to your clothing.
I've had to leave so many museums because they have no seats. some rooms in the state modern have benches but a lot of the larger ones don't and I do not get to spend nearly as much time as I like with the art I love
oohh i love your charm bracelet
I totally respect your opinion, but thought I would share mine since you asked.:)) I am aiming for recovery because I think that believing with 100% certainty that I can recover is the only way I can. That is because believing it is possible is the first step to making necessary changes (finding baseline, not pushing and crashing, nutrition, sleep, mindset) that will propel me to improving my health and calming my hypersensitive nervous system to the point of full recovery. I do agree with you that having short-term goals and celebrating small wins is so important though!!! I saw this video is from a few years ago, has your opinion changed at all? How are you doing now?💕
I love this multi function rollator.. there are many people that can benefit from using this but, it’s all about the pricing.
I'm in Australia where can I acquire a Rollator like yours.
I am considering a cane or walking stick because my ankles and knees sometimes flare up and hurt. They hurt to walk on and such. It sucks! My parents never took it seriously.
i do not no about your chronic illness and disability or what you are going through right now but if using that stick helps you that is all that matters do not listen to other people just do what you have to do and i no you are not faking it and i hope you are doing ok
we can have cute aid devises, we want to be cute!
I actually just got a referral for a wheelchair, I have bad chronic pain in my left leg due to work accident about 3 years ago. My foot healed wrong so now I have bad chronic pain.
I used to walk beside my mobility scooter so I could walk a little bit and someone actually accused me of stealing it. I never walked with it again, and now I hate using it.
I 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
Honestly the best way is to just get a really cheap mobility aids online and then upgrade it when you are happy with it.
Since using mobility aids, I have found that I feel the need to dress up a lot more than other people. And I think that's because I don't want my walker or wheelchair to be the centre of attention by being the first thing people notice
Life debilitating mental health sufferer here, I have a decent appetite...when I eat, which may be nothing at all for a day or two due to just not wanting to cook or feel like the effort required. Firstly meal prep is king, I've got an arsenal of recipes that are easy to make that when I do have a burst of energy I will make the effort to make a large batch of food and freeze, it does take a while and afterward I'm mentally drained but that's 8-16 portions ready for me whenever. Second thing is cooking is a heavily practice based activity, I love food so by necessity cooking is kind of a half way between a chore and a hobby for me, I've gotten much better as over the years which reduces the time and effort. Lastly, recipes are good but the order in which you do things is not written well for people who struggle with cooking for whatever reason. For example, I have prepped every possible step that doesnt require using the hob from the comfort of my sofa or bed previously. You have ALL the time in the world before you put the ingredients in the pan etc. for myself when the food is cooking that's when I'm being rushed and panic 👍 hope that helps.
Still on legacy benefits, the evaluations that happened pre covid were traumatising and anxiety inducing. I had to essentially succeed in "doing well enough" points wise to be continue awarded ESA, as mine is mental health related with suicidal tendencies. it's sickened me how vile and appalling that is the way to be judged.
Honestly, if someone were going to fake a disability, they'd choose things that looked as medical as possible.
What do you have in medical condition
Very nice tights and out fit
Hey Elinor, thanks for your video 👏. I have recently become an Ambulatory Wheelchair User to Dash. I have struggled for years with my mobility because like others have said I didn't feel that I was disabled enough to warrant my using a wheelchair & I didn't want to be labelled, but recently things got so bad that I now can't walk far or for long without being in extreme pain. I call my wheels 'Dash' as it helps with my acceptance & the chair doesn't feel so foreign to me. Still getting used to it, but it is opening doors that I felt were closed to me. Thanks again for sharing & best wishes to all Ambulatory Wheelchair Users, we CAN do this 👍. Christine
I must just be lucky (not) - first time I used my trial wheelchair in a shopping mall and I got a wee one yelling "Look Mum a wheelchair" and some "kind" people wanting to pray for me - to be hones I really wish I had been quicker on the uptake when they asked "What is wrong with you" and said "nothing. What is wrong with you asking that question of a stranger"
How can you justify 750 quid a month because someone says they have adhd for example. Stop expecting the government to wipe your ass, in the 19th century people had to cope.
What a great creative insightful video Elinor!❤
I struggle with feeling entitled to use a wheelchair. I use them in stores and I'm always amazed at how much better I can enjoy things.. but I'm terrified of people especially coworkers being rude about it.
I know im very late, but for anyone else reading that might find this helpfull here is my tip for brushing your teeth. What i would do when i was bed bound was to have a cup of water, a bowl and my tooth paste and brush by my bedside, instead of swaloing the toothpast you can just spit it in the bowl and use the water to wash your mouth and your toothpaste. If you strugle with brushing teeth just always having the bowl, the brushing items and a water bottle by your bedside can be of great help, you can just leave it there for quite some days without having to do anything, and then when you have more energy you just refil the water bottle and wash the bowl