I get that horrible organ pain too. Usually when I’ve sat up too long. My organs feel like they’ve been wrung out like a dishcloth and I start to seize up. That pain was the final push that made me get my wheelchair, before that I would just run off adrenaline and crash horribly later. I can’t hardly make decisions either. My family will ask what I want to eat for dinner and I just shrug. Deciding whether to push through the pain and fatigue to go out is the worst because you have to prepare and understand that you might crash even harder because you push through. I’m glad you’ve found such a great mobility aid. I love when aids don’t look like they have come straight out of a hospital or a retirement home!😅❤
It's so awful that, on top of everything, we also get anxiety. For anyone who doesn't know what that feels like, it's far more than feeling just a bit anxious. It feels like your whole body is paralysed, you feel sweaty and cold at the same time, you can't arrange your thoughts, your limbs shake uncontrollably and although breathing exercises help A BIT, there is nothing you can do to stop it completely, which makes it all the more annoying when people tell me to just "calm down". Usually I AM calm and it's happening regardless. It's physically taxing on an already taxed system and occurs at the most inconvenient moments. I get it whenever I have interaction with anyone who is not immediate family... even talking on the phone is too much. Elinor, well done for pushing through. This illness is so unpredictable. I enjoyed the video and will certainly learn from your experience when I plan to take a journey that's farther than my local supermarket 😅
Oh my gosh! I’ve been following your account for a while now and strangely enough I’ve JUST bought a rollz motion myself about a month ago. It has already been such a lifesaver and enabled lovely days out with myself and my partner. It’s absolutely wonderful. Mine is matte black and I decorated it with rainbow leopard vinyl stickers 😍
Just found your channel through the first Rollz video and then this one, your channel is literally so perfect. I relate to so many of the feelings you went through and its the worst trying to decide if you should push through or not. But I'm glad you got to enjoy the museum and can't wait to catch up on the rest of your videos ❤
Seeing this I realize how much I need a wheelchair! I am tired of being stuck at home. Even though I have 2 caregivers that take me out about twice a week, I have to rest for like 3 days afterwards.
Thank you for being so vulnerable with us! The anxiety and decision paralysis are so hard to deal with and I have been through the exact same thing! You did so well, and I agree with all of your opinions on mobility aids, I got a rollator quite early on in my illness and it really changed things for me, I hope this can be a bit of a turning point for you too! 💕
I love your videos! Also LOVE LOVE the color and style of that rollator. unforunately doesnt seem to handle more than 125kg :( I am working on my weight and PT however so I'm hoping maybe in a years time I can buy one and I can use this to travel rather than a wheelchair because then it would revolve less planning on accessibility just a tad bit but give me the support I need if I need to sit down or be wheeled at any point in time. seeing you use it is making me think I need something hybrid like this.
I get this way going out a lot. I'm always worried that something will go wrong. Now I take pain meds before leaving the house, and for my POTS, I'll take my electrolytes tablets. I normally need two. Then if I'm gonna all day, my person with me will remind me take a few more. It has helped a lot
@@ElinorBrown try it before you judge😉 or you want to stay in that condition? You really need to tread your anxieties. Then you will see what you are actually capable of.
Love hearing more about your Rollz and the freedom it offers. It was a big investment but I decided to take the plunge and get a Rollz Performance in Forest green. It has front tyres that you pump up so is smoother on rougher terrain. So far I’m really enjoying it and it’s helped me get outside independently. Something I’m working on is the judgment and looks from other people whilst I’m out 👀 ablism is the pits! Sending spoons to anyone who needs them 🥄 ❤
I get that horrible organ pain too. Usually when I’ve sat up too long. My organs feel like they’ve been wrung out like a dishcloth and I start to seize up. That pain was the final push that made me get my wheelchair, before that I would just run off adrenaline and crash horribly later. I can’t hardly make decisions either. My family will ask what I want to eat for dinner and I just shrug. Deciding whether to push through the pain and fatigue to go out is the worst because you have to prepare and understand that you might crash even harder because you push through. I’m glad you’ve found such a great mobility aid. I love when aids don’t look like they have come straight out of a hospital or a retirement home!😅❤
Your Mom is so sweet ❤.
Flexibility and independence is a big step forward. The rollater looks like it will be a great addition to your aids ❤
It's so awful that, on top of everything, we also get anxiety. For anyone who doesn't know what that feels like, it's far more than feeling just a bit anxious. It feels like your whole body is paralysed, you feel sweaty and cold at the same time, you can't arrange your thoughts, your limbs shake uncontrollably and although breathing exercises help A BIT, there is nothing you can do to stop it completely, which makes it all the more annoying when people tell me to just "calm down". Usually I AM calm and it's happening regardless. It's physically taxing on an already taxed system and occurs at the most inconvenient moments. I get it whenever I have interaction with anyone who is not immediate family... even talking on the phone is too much. Elinor, well done for pushing through. This illness is so unpredictable. I enjoyed the video and will certainly learn from your experience when I plan to take a journey that's farther than my local supermarket 😅
Oh my gosh! I’ve been following your account for a while now and strangely enough I’ve JUST bought a rollz motion myself about a month ago. It has already been such a lifesaver and enabled lovely days out with myself and my partner. It’s absolutely wonderful. Mine is matte black and I decorated it with rainbow leopard vinyl stickers 😍
Just found your channel through the first Rollz video and then this one, your channel is literally so perfect. I relate to so many of the feelings you went through and its the worst trying to decide if you should push through or not. But I'm glad you got to enjoy the museum and can't wait to catch up on the rest of your videos ❤
Seeing this I realize how much I need a wheelchair! I am tired of being stuck at home. Even though I have 2 caregivers that take me out about twice a week, I have to rest for like 3 days afterwards.
Very nice tights and out fit
Taking my new Rollz out tonight for the first time 😊 Looking forward to it
Hope you enjoy it!
Thank you for being so vulnerable with us! The anxiety and decision paralysis are so hard to deal with and I have been through the exact same thing! You did so well, and I agree with all of your opinions on mobility aids, I got a rollator quite early on in my illness and it really changed things for me, I hope this can be a bit of a turning point for you too! 💕
I love your videos! Also LOVE LOVE the color and style of that rollator. unforunately doesnt seem to handle more than 125kg :(
I am working on my weight and PT however so I'm hoping maybe in a years time I can buy one and I can use this to travel rather than a wheelchair because then it would revolve less planning on accessibility just a tad bit but give me the support I need if I need to sit down or be wheeled at any point in time.
seeing you use it is making me think I need something hybrid like this.
I get this way going out a lot. I'm always worried that something will go wrong. Now I take pain meds before leaving the house, and for my POTS, I'll take my electrolytes tablets. I normally need two. Then if I'm gonna all day, my person with me will remind me take a few more. It has helped a lot
I JUST AUDIBLY GASPED YIPPEE I LOVE UR VIDEOS
Thankyou 💜
I'm in Australia where can I acquire a Rollator like yours.
What do you have in medical condition
You should always put the brakes on to sit down in the wheelchair, dose not mater the surface. So it dose move when u sit down
yep, it’s one of those things you know you are supposed to do, but I don’t actually do it!
Take Escitalopram. And go up to 30mg. Then your life will change. No anxieties, no weelchair. Only progress.
you really shouldn’t ‘prescribe’ medication to strangers on the internet
@@ElinorBrown try it before you judge😉 or you want to stay in that condition? You really need to tread your anxieties. Then you will see what you are actually capable of.
@frkk6933 Are you a medical professional? Especially as you're claiming to have a cure.
@@ecologist_to_be yes, I'm a witch doctor, Sarah. Do you want me to heel you too?
Love hearing more about your Rollz and the freedom it offers. It was a big investment but I decided to take the plunge and get a Rollz Performance in Forest green. It has front tyres that you pump up so is smoother on rougher terrain. So far I’m really enjoying it and it’s helped me get outside independently. Something I’m working on is the judgment and looks from other people whilst I’m out 👀 ablism is the pits! Sending spoons to anyone who needs them 🥄 ❤