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 💜

@ElinorBrown

8 ай бұрын

I'm so glad!

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 💜

@ElinorBrown

8 ай бұрын

that’s great! so glad you’re doing so well!

💜 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....

@ElinorBrown

8 ай бұрын

you got this!!!

This is so tough to watch and so true with so many people that have an invisible illness 💜

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💜 Thank you for sharing.

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 🙃

@clarke4624

8 ай бұрын

I've found Instagram really helpful, and that's also helped me with mobility aids alongside these videos

@ElinorBrown

8 ай бұрын

It can be hard to find people, I know a couple in real life through coincidence, but mainly I know of people through KZread & 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!!

@Jules-zw7iu

8 ай бұрын

​@@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... 🙃😔

@beknight9399

8 ай бұрын

​@@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.

@Jules-zw7iu

8 ай бұрын

​@@beknight9399exactly! Maybe we need to reclaim that social space somehow! 😄😅😉👊

So inspired by this energy

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 💜

@ElinorBrown

8 ай бұрын

Thanks for listening

Thank-you so much for sharing! 💜

@ElinorBrown

8 ай бұрын

Thanks for watching!

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

Your beutiful babe u got amazing energy x❤

💜👍🌱

@einbisschenwasvonjenem

8 ай бұрын

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Hello my lovely wife 💋 ❤

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