The Wheelchair Tag! | Using a Wheelchair for EDS & POTS
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- Опубликовано: 4 сен 2024
- The Wheelchair Tag!
This tag was created by Gem from WheelsNoHeels: / @wheelsnoheels
I was tagged by:
Jenny Cole: / @jennycole1988
Emma Jay: / @emmajay_
I tag:
Kate Walker: / @kateisrare
Argent Rxse: / @argentrxse2976
Anya's Life: / channel
Jessica Kellgren-Fozard: / missjessicakh
Life With Stripes: www.youtube.co...
Chronically Lucie: / @lucie-janefeltham7844
FAQ
I have Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome and myalgic encephalomyelitis.
I'm a full time university student
I'm also a wheelchair and catheter user
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I recently came across an Instagram girl who was in a wheelchair and in other pictures, she was standing. I'm not like some people that call them out like "You're faking!" I honestly was curious. This just answered all of my questions. I've never heard of this before and it is strange that this can affect some people.
Wishing you the best in life and don't listen to anyone who might say mean things to you. We need more education on stuff like this rather than judgement.
Thank you so much! It’s great that you saw this as an opportunity to learn & Im so glad my video was able to answer the questions you had ☺️ Every day is an opportunity to learn something new ☺️
Yes I love this! Ill be uploading mine next week so stay tuned ❤ Thank you for tagging me
Argent Rxse I’m looking forward to seeing it!!
Lol when I was out the other day I was using my chair cuz I just got out of hospital and I was at the store and some random guy was like “ she’s got her own chair, wow you’re pretty good in that chair, I bet you can do tricks” he had someone with him that was using the stores manual chair for public and I was just awkwardly smiling and like “thanks...?”. I’m only a part time user but it’s not like he knew me and it was just the weirdest thing I heard.
Oh that is strange, I wonder if he was just trying to be friendly haha
Awesome videos! Kudos :) I have POTS too but I'm stuck in bed and I don't have a wheelchair because they don't want to see me in one, they think it's so sad they'd rather see me being stuck inside all summer.
Max Bondén who’s they? My family thought that too, but it’s my life so I did it anyway. You know yourself best
The free wheel can help with kerbs but it may make chair too long but you can take them of and hang em on back of chair once inside.
That's one thing that would stop me having a manual with powered wheels as kerbs essential!
Doors do take some skill to learn...if your chair is powerful enough the chair can basically do the opening for you...I can independently open 90% of doors other than the fire doors they have in flats etc they're evil!
Yes I got left out it is the worst.
Sarah it might help with curbs but the e-fix is very tippy so I’m not certain it would, I hadn’t thought about using it for that though so that would be interesting to find out!
That’s understandable!
Thanks for the advice!
I’m sorry you’ve dealt with that too :(
@@GeorginasJourney That is one added benefit to the Q700 range they so heavy takes a lot to tip them.
Sarah I hadn’t heard of that range!
Thanks for taking part lovely. Really enjoyed hearing your answers xx
Jenny Cole thanks for watching and for tagging me! xx
Really love this video! Thank you for the tag! I will be uploading mine soon☺️xx
Thanks! Looking forward to watching your video!
Thankyou so much...I'm making this very difficult transition to wheel post pandemic and I've been so overwhelmed by all the options and things I may need. The power assist is brilliant. Learned alot thanks for putting the information out there!
Miss Askew you’re welcome! Although if you need a power chair and you have the space for it in your house (& whoever’s car you use the most), I’d recommend getting an actual power chair over a power assist, as they’re far more expensive & also have shortfalls like not being able to manage curbs independently or efficiently like I talked about! Immune was funded for by a charity and GoFundMe!
@@GeorginasJourney I have EDS POTS- ya know the Zebra goodie bag of comorbidities. It's been time to get one and I cant afford it either, so I will be going the same route with charities. Unfortunately I am me myself and I alone, so I really like how versatile and adjustable yours is. Some days I can use my arms somedays they dont want to stay attached 🤷♀️ so this is great info!
Miss Askew I completely understand! Honestly though, I can’t go out in mine independently (at least one of my friends is always with me) so from what you’ve told me, I think you’d struggle with this option. I love my chair atm, but when I leave university and will also be on my own, I’ll be getting a normal power chair so I can go out independently and they’re also a fraction of the cost. Anyway, I wish you the best with what you decide to do!
@@GeorginasJourney Ahhh I see, dually noted😏❤
@@morgancalvi6675 I’m going to do a video on it soon as I don’t have the energy to type it all out.
I Georgina I also have POTS and EDS and I would like to ask you few questions but the most important one is...were you ever given the option of Saline Infusion?
I also live in UK and the only time when I get the Saline Infusion is when I get admit to the Hospital so I was wondering if you managed to have more info abt it. :-)
Still Carol Hi Carol! I have a video all about that on my channel- it’s quite a way back so searching ‘Georgina’s Journey Saline infusions may be easiest! It’s too much to type here but that should cover everything! 1:49 onwards of that video is the part you seem to be most interested in, hope this helps!
Another great video. I also have EDS for that last 26 years. I mainly use a wheelchair but 13 years ago my right shoulder permanently dislocated so a manual chair is very hard to use without severe pain. I'm looking at the Alber E-Fix E35 system to go onto a new Kuschall K-Series Titanium Wheelchair. Would you recommend the system? I hate the look of NHS style power chairs.
Chris Stevens the E-Fix is not compatible with the K-series unfortunately. I used to have a K-series, but had to sell it in order to get a chair that was compatible with it
Georgina I recently subscribed to your channel and I have been binge watching your videos every day because they are so informative and insightful I also have videos on RUclips spiritual health is wealth ibn Washington
Ibn Washington thank you! I had a look but your channel says it has no content
The last video I uploaded was almost two years ago, I guess you can say that I have been going through a process of trying to reinvent myself to be a better person that's why I really get a lot out of watching your channel because you are so knowledgeable of the different areas that I need to work on and improve,if you put spiritual health is wealth ibn Washington into your RUclips search link my videos will show up
Ibn Washington oh, I thought you meant in the channel you’re commenting on
I struggled doing doors with my efix far prefer my quickie for doors for some reason it’s a million times easier
Deffo try a freewheel I can’t wait to try mine more when my smart drive is working
ilovebrean if I figure anything out to make doors easier with the e-fix I’ll definitely let you know!
Thanks, I just don’t know if I can justify the price at the moment
Can I ask with your diagnosis of Eds do you have The bendy fingers? I have all Hypermobility and pain in most of my joints but my fingers are the least flexible part of me but they seize up a lot xx
Ellie Waters hi Ellie! Both of my little fingers are bendy, but other than that, mine aren’t either. My CMC joints (just below the thumb) dislocate frequently and incredibly easily though. And my fingers also seize up a lot! xx
Georgina's Journey yeah my little fingers are the most bendy out of all of them. I wasn’t sure how it was diagnosed xxx
Ellie Waters There’s a huge set of criteria for it, Izzy Kornblau has a video with hundreds of thousands of views in here which explains it really well- it’s A LOT more in depth than whether you have bendy fingers or not haha
Ellie Waters the videos called ‘how to get diagnosed with EDS | 2017 criteria’ I think, which is still the criteria that’s used. I’m diagnosed with HSD as well and the EDS diagnosis wasn’t typical for me, so I say I have both as I don’t really know which one is more accurate for me & I’ve technically been diagnosed with both
Can you tell me more about your wheedchair cushion?
M bizzartist I used to have the jay easy visco cushion which is really good if you have moderate risk of skin breakdown (for people who use their wheelchair a lot, but not full time), it has pressure redistribution properties as well as positional support :) My cushion that I have now is very similar, but idk what it’s called
💚💚💚
Thanks Debra!
This video was a while ago, so you might not see this. I'm almost confirmed PoTS. Everytime I have had to go A and E I get judged for saying I can't walk and need a chair. I tell them my legs work but I could faint and I feel horrible standing at the moment. They tell me PoTS patients don't need wheelchairs. Is this true? Am I being dramatic? Do you use the wheelchair for PoTS mainly or for your other conditions? Sorry for all these questions and thanks for this inspiring video.
Some people who have POTS need a wheelchair and others don’t. If you can’t do something without fainting, then of course you need one. I can only stand up for a couple of minutes without fainting, so I cant really leave the house without one, as I wouldn’t get much farther than the end of my road. People at A&E are often judgemental about POTS patients because POTS isn’t an emergency & their job is to treat emergencies
@@GeorginasJourney Thank you so much for this detailed reply. I really appreciate your time. This has made me feel so much more comfortable. I currently can only stand and sometimes walk to the bathroom with aid. I have my tilt table test on Wednesday. Hopefully it gives me a final diagnosis.
Is it possible to get a Wheelchair for EDS Without also having POTS? I am getting Evaluated for EDS But it takes forever becuase reasons I guess. I do get ocationally chestpains and dizzy on occations from standing up after lying down, especially when I get out of water, then my feet look a bit more pink than usually and fell really tierd despite just getting up after lying in water. I also find walking to be painful a lot of the time, almost always after 10 minutes standing or walking give or take then it gets worse throughout the day so I usually end up limping and I often fall down
It depends where you get the wheelchair from!
I'm sorry Georgina I sent the message to quick
I do like your videos I do have a veteran friend in a wheelchair
When I would go to his house I would set it and do wheelies
We would leave the baseball games and he would go around it turns in the stadium like a man
40 years in a wheelchair I think he knows what he's doing
You two have something in common
I hope you become friends
Like I said I don't know I haven't heard from her in months
I do hope she is okay
Thank you for your quick reply the other day
I did not expect that
Please talk to this girl Luna or luda
Your friend in the states
Steve Mccullough You’re mixing up pronouns. Is it a boy or a girl? And how can I possibly contact them when you’ve not given me any contact information. And just because two people both use a wheelchair it doesn’t mean they should automatically become friends. Most of my best friends do not use wheelchairs
Hello Georgina
I'm Steve McCullough from Ohio from the states
I would like you to talk to a girl here in the states
She has stage 4 of something I can't remember
But it is a crippling disease she only has use of her thumb and two fingers
She cannot walk at all
I haven't seen any post from her in a while
Her name is Luna or luda
Steve Mccullough I remember you Steve. How do you want me to contact her if you don’t even know her name? And her condition is very different to mine, so I don’t think I will be able to help