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I've only just been diagnosed with ME, but I've been suffering with it for months. I often have to take time off college or not go out with friends because even with a walking stick i get so exhausted. I'm considering getting a wheelchair because i could push myself short-mid distances, and then for longer ones or on bad days my friends could push me. How can i talk to my mum/doctors about getting one?

The real issue is that people today are bound and determined to be offended regardless of whatever you might do. As far as I am concerned, there is NO reason to "celebrate" having a issue, that is if you are overweight I am not going to call you brave for being so. Simply having a condition doesnt make you better or worst than anyone else. Also, I wont apologize for medical science wanting to correct deficiencies as best that we can. My eyesight is getting old, so I wear glasses, if there was a pill to correct it, I would. I was born with allergies and asthma and if I could take a pill to rid myself of them, I would have, age and exercise mostly seem to addressed the issue oddly...lol. I dont know of anyone who, if given a chance to correct a significant health or mental issue wouldnt do so. And its stupid when people go around and try to pretend that isnt true. Further, as I stated, it doesnt matter how a disability is presented in media or why or if at all. SOMEONE is going to around calling it ableism...which I think is idiotic in itself. Like sexism or racism, where ill intent and object of the act is to harm or demean than fine its wrong and I agree it should be stopped. HOWEVER, all these "covert" acts people like to cite are BS. If I say that a dream world is one in which no one would have to life with a disability, is that ableism...maybe to some...to me, its common freakin sense. We live in a real world and people DO have challenges they need to deal with, and I commend anyone who can take their situation and work to adapt to it and/or improve it where possible. But that doesnt mean that at the same time we can acknowledge that the diseases, conditions, etc themselves are a problem and problems should be solved. again that is entirely WHY we have medical science.

I get a little stressed because no one tells me what the damn reasons are for being an ambulatory wheelchair user! Everyone just says "Ainnnn I got sick" WHAT DID YOU GET SICK FROM? Why, when, where? And then you might say to me, "Ahhh, but they're not obliged to tell you their diagnosis." So also don't expect anyone to simply believe everything they say. If you want general knowledge about ambulatory wheelchair users, talking about reasons why a person needs a wheelchair at one time and not another, makes people understand better. You do not need to disclose your diagnosis, but say which illnesses cause the need for a wheelchair at specific times, might help. I have watched several videos on this subject, and no one talks about what the disease is, how do you help understand these people who need a wheelchair for some periods of time, if you don't give me all the information? It makes me think that you are not being sincere, that you are hiding something, either because of the fear of the judgment of others or because you are lying (pay attention, I am not saying that she is lying because she didn't say her diagnosis, but when you're not 100% transparent about something that people are already doubting because it might be false, it's basically a human instinct to question the veracity. I don't think she's lying, far from it, but I think she could have said more about what diseases cause this condition.)

May I ask which medications you take?

Thank you very much for this video, but in other hand, as i noticed, there are only women represented in youtube videos on chronic illnesses such as ME/CFS, POTS, EDS, rheumatoid arthritis, etc. Where are men with those conditions?

Hey, I've got a question and I'm wondering if anyone can help? I'm 16, and i was hosptalised with a sort of flu triggered asthma attack, but with that, I've had all the symptoms of ME/CFS for 3 months now. The doctors havent brought it up but nothing has shown up in my bloods so theyre not believing me. How can i bring up ME/CFS being a possibility without seeming like I'm self diagnosing? On days when its not too bad, i still have to use a walking stick to get around and cant really do stairs, I'm always weak and dizzy, and so tired. Im feeling the pressure of college- i cant do work let alone homework. Ive had time off. I used to do long distance running- now i can barely work. On bad days, like today and all of this week, I'm basically bedbound. I can barely walk a few meters to the bathroom without collapsing. I get nausea, so i cant eat very well either. It feels like i cant do anything

Would the name driver be able to use the car without having the disabled person in the vehicle all the time

Hi Elinor, thank You for this video. being honest and vulnerable like showing yourself struggling in the internet takes a lot of courage. ❤

My symptoms are exhausted all the time extremely weak tired i have internal tremors this can last all day even when i eat i wake with horrendous shaking every morning 😢

Beau témoignage, merci..

You get money regardless of income?? brb moving rn

Aesthetic preference is a 100% valid reason to pick an option!!

Personally I struggle to identify with any of my medical devices if they don’t feel like me. I take so much more pride in my insulin pump when I like the way it looks or is covered with pink stickers. I hated my last pump because I chose it quickly when my previous one failed and the company no longer made pink pumps- I hated it, would always hide it, and neglected my diabetes. My cane is pink and I love it, and when I had more energy to make jewellery etc, I made little crystal dangling bits to hang on the handle. When it comes time to get a wheelchair, it will 100% either be pink or customised to the heavens with pink accessories. They’re an extension of me and my body so of course I want it to match me and be my fave colour! 💖

I’ve been looking at the I-go candy for a while. I can’t believe it used to be £199, 3 years later it’s £299. Got to love inflation

Nice presentation ❤

It took me 5 and a half years to get my associates degree. Lots of difficulties, but I’m so proud of myself.

This was a Great video. Also, verry a beautiful dress.

What website can you view available cars

You’ve probably already thought about it but would you consider getting an electric wheelchair?

Thank you for sharing your knowledge with us 🙏 Unfortunately i’m developing ME/CFS myself and this info was very helpful for me! Especially i struggle with tip 3 cause everytime i mention my chronic illness nobody understands and shrugs it off as inconsequential so i feel a lot of shame and and dispair so i often try to act ‘normal’ I don’t know if your religious but may god bless your soul and take you to the highest level of success

Late to the party. Remembered you did this mini series & came back for fresh inspiration. What about a quilt made of clothes you want to keep but won’t wear anymore? I am such a huge clothes horse, myself. I find so many lovely things thrifting. And with drastic weight fluctuations, it definitely gets sticky trying to simplify my clothing. Your mom is such a lovely help, too. 😊

If anyone has a disability ID card there is also an offer on there for 65% of first box and dessert for life. If you also know someone who was or is on hello fresh then they often also have discount codes. Annoyingly it only applies to first boxes but every little helps ❤

I love your list of three things. They are so true and can be Applied in so many different situations.

Thank you for your video! ❤

Your school should’ve definitely let you resume back at the same point in the semester rather than wiping all your assignments clean if you had deferred. 😢

There were some really beautiful views on Your trip of a sunset in the water in the trees. That must’ve been so frustrating and unexpected having your flight canceled like that at the last minute. Sorry that happened but I’m glad you got home safe and sound

I don’t understand how people have so much time on their hands to make up nonsense like the comments. Also I loved what you said about having Disability not meaning you have to always do the practical thing. That’s so true.

It’s so nice to see other families in similar situations like mine. I was blessed to be able to on vacation when I first got sick. I can’t right now, but it’s nice to see that my family isn’t alone in staying at the home on vacation or just hanging out by the pool. I want to thank you for your videos on walking sticks they were so helpful. I bought my cane from Neowalk because of you and I love it (it’s purple)!

This was a great video and I thought you did a great analogy with the umbrella and glasses. I have low vision and I’m always trying to explain to people that yes you can be visually impaired and still have sight which I think it’s a similar idea to them struggling with the fact that someone can be able to walk but still benefit from using a wheelchair.

Hi Elinor, have you ever heard of the starch solution for your all health issues? 🙂

I know you posted this a while ago now but congratulations for your first train in a while and your first wheelchair journey. You’re totally right, it seems so simple for them just to have ramps in the trains in general that way they would be available and wouldn’t require booking assistance advance. I am in America and we have to ask for the Rams find someone as well I don’t know why they can’t just have a nearby the fall. Doesn’t seem like it would be that complicated

I've always had my doubts about the BBC so it's not much of a surprise.

Thank you for your bravery in sharing your story. I was diagnosed with Fibromyalgia at age 21, and later with fragrance allergies. Ever since I was diagnosed with these invisible illnesses I have been accused of making up my disabilities by doctors and other health care workers, as well as friends, and even family members. It has caused me to develop Imposter Syndrome, which is also disabling in its own way. It's so hard to live with these conditions. Thank you for making me and I'm sure many others feel less alone.

Thank you 😊

Thanks for your video! 🤗

What website are you using that shows you what you can pick

Every time I go out of town sleep is almost impossible so I completely understand where you are coming from, hope you got the sleep you needed eventually. I constantly struggle between bouts of insomnia/sleep panic attacks/panic attacks in general and bouts where I will sleep for 12-16 hours and be unable to get up. Sometimes I have good days but very few and far between. I can't get much done and have lost a lot of my desire to want to do something productive because I feel so tired. However, sleep medication (prescription) only makes things worse for me as it makes my anxiety shoot through the roof so I guess this is just going to be the way it goes until I find something to help. But it is okay, life is still good. Glad you got to go on a fun vacation and see beautiful things!

I was a child when my situation happened. I came out and said it to my abuser to which he replied "if it happened I'm sorry" this is the kind of language people who are guilty of these crimes use. He passed away in August of this year and if I could give any advice it would be to file a report because I never got that chance.

I'm so sorry you had such a rubbish experience on your way back 💙 Travelling setbacks can be really hard especially when the airline doesn't offer much in the way of support.

I hope you get the rest that you need to recover. So glad you were able to go on a trip and I hope you had a lot of fun dispite the struggles. When you were talking about people staring at you when you were just trying to wander and enjoy something I completely get that and although I have been using my wheelchair for a few months now I still get anxious about it. Remember your worth and remember that you know why you need it and how it helps you to do more. Other people don't have to understand. On another note I am very grateful for your videos. I don't have MS but I do have a brain injury that causes a number of things like fatigue and migraines and head fog that get worse when I overwork myself. I found your videos comforting to me as you are also able to walk but struggle in excess. You have given me tips and a whole lot of confidence as I began my cane and eventually wheelchair journey. I really appreciate it 🙂

hi thank you for sharing you holiday, did you think about taking your wheelchair with you? I have done it many times now and its very easy and it does take away the anxiety of it not being your wheelchair and I totally get that im like that to if I don't have either my manual chair or my power chair with me.

I totally get you saying how important it is to feel "comfy" with your wheelchair. I have an electric attachment on my custom chair which I actually cannot handle. I feel very unsave and anxious. Luckily it will be changed soon and I hope I will feeling confident and save using it. Also I get how important it is to have your chair (in terms of function, decoration) to feel well. No chance for you to get a customized chair via NHS? Or an active chair second hand with your measurements from ebay or so? I have my customized active chair for a year now and it changed my life so much to the better!

Was the holiday worth all the stress and tiredness? it was quite upsetting to watch you have to deal with the problems in the airport 😢

Did you not consider taking your own wheelchair?

EXCITING!!!!!!!

I don't understand how a cane would help with chronic fatigue syndrome? This is a genuine question. Please help me.

I know this will be an additional barrier to overcome but use the equality act to request reasonable adjustments that remove barriers to access the system, there is a legal obligation for DWP to comply with any reasonable adjustments

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

in my opinion, recovery is basically the absence of post-exertional malaise.

Dudu delha jay 🧐🧐