Different days come with different mobility aids! 💖👩🏻🦽
ฝัง
- เผยแพร่เมื่อ 11 เม.ย. 2024
- some days I can walk, and I feel relatively okay when I’m standing 🤸🏻♀️
some days I can walk short distances, but feel my symptoms coming on when I walk for longer 🚶♀️
some days I can physically walk, but my symptoms are debilitating enough for me to use my wheelchair 👩🏻🦽
and some days I can’t walk at all and may have to use my wheelchair the whole time! ♿️
but people with dynamic disabilities, or perhaps people who are chronically ill, are still just as valid about using mobility aids for their needs! ❤️
mobility aids are tools that are there to be used!! so we shouldn’t judge people for the reasons why they need to use it or the amount of time they do have to use it for 🫶🏻
don't forget to subscribe! ♡
#mobilityaid #wheelchair #wheelchairuser #ambulatorywheelchairuser #ambulatorywheelchairusersexist #chronicillnessawareness #chronicallyill #fndawareness
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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and orthostatic hypotension along with being neurodivergent!
2. How old are you?
‣ 18
3. What is FND? 🧠
‣ fndhope.org/fnd-guide/
4. What is Tourette's?
‣ www.cdc.gov/ncbddd/tourette/f...
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‣ Final Cut Pro X
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✰ About Me ✰
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and what its like living with Tourette's Syndrome, Functional Neurological Disorder (FND) and Orthostatic Hypotension. Tourette's syndrome is a neurological condition causing involuntary movements called tics.
I use my social media (TikTok, TH-cam and Instagram) to advocate and raise awareness for my conditions and show what it is like living with a disability as a neurodivergent person. I am also autistic and share my sensory struggles along with my experiences with mental health disorders.
I show what its like having a disability and the accommodations I have to help my daily life. I am an ambulatory wheelchair user showing my life using mobility aids and how chronic illness symptoms change from day to day!
I am also a musician with a popular song called "She's Mine" available on all streaming services - I wrote, produced, mixed and mastered all my songs myself! I am also an artist and a writer. I love reading and I'm currently writing a novel and a book about my life!
Mobility aids should never be gate-keeped!!
True. But did I miss something in the video saying this? It seemed pretty positive to me
Who does that tho?
@@justhereforthevideos2798 sooo many people. I’ve been told a lot I’m just lazy and don’t need a seat cause I don’t “look” disabled. Haven’t ever had a mobility aid like a wheelchair but it happens a lot, mainly with people who are ambulatory (meaning, like her, they can sometimes walk and sometimes not)
Gate-kept*
@@cloudyskyz2237 ohhhhh maybe I misunderstand gatekeep in this context. That explanation makes sense.
I don’t use a wheelchair but i just want to thank you for spreading awareness of good and bad health days. People tend to look at me and go “you’re fine” without actually talking to me at all, namely my bosses. I wish more people understood that my 100% looks different day to day, but it doesn’t mean I’m not trying. Invisible illnesses suck.
I have a brain injury and put a smile on my face every day and it can be really hard to get up and face the world sometimes I can walk but I'm in pain so I use a stick which some people say he don't need that he's putting it on etc which is really annoying I think sometimes they should try just one of my bad days
@@andrewphilpott5996 yep, sometimes it would just be really handy if we could "gift" people a day of what we go through.
Yep, or assume you are feeling some unrelated emotion. Apparently my "I'm in too much pain to think" face looks exactly like resting b1tch face, so people think I'm mad at them when I'm just in too much pain to comprehend what they are saying and reply.
Ugh. I hate ableisim in the workplace. I have had so many issues with "looking healthy" to those around me and people assuming im fishing for sympathy or i just want to be lazy because i dont look disabled. And the worst of these issues ive had have been at work.
A woman from my old work told my co-worker that she wasn't handicapped because she didn't sit in a wheelchair (or something of that kind). It's just that my co-worker had EDS, which made it that she had constant pain in her body. It didn't "show", but it were still there.
"Generally just very unstable"
You and me both, sister.
@@eiswyrm8994 🤣
@@eiswyrm8994 LMFAOOOO
I’m unstable mentally
"I'm just very unstable" me too girl just mentally 😀
Same
Same😅
It should be obvious and is complete logical in hindsight, like how not all “blind” people have 0% vision, that not everyone who uses a wheelchair is completely paralysed. thank you for sharing your experience and spreading awareness!
It starts with realizing that paralysis isn't the only disability that requires a wheelchair.
There are muscle and bone conditions, amputations, genetic disorders, congenital malformations, lung and heart disease, vertigo, chronic fatigue and low energy, autoimmune diseases [MS, RA, Myasthenia Gravis, Addison's etc] and so many more that all affect our mobility. A manual or electric wheelchair allows EVERYONE who struggles to get around to leave their bed or house and take part in their own life and society. It can be temporary after an injury, surgery or illness that will heal over time, or long-term for anything that cannot be cured or leaves permanent challenges. In any case the use of a wheelchair can be ambulatory, part-time, only for long distances, full-time, or may even require another person to move it. And all of that even applies to paralysis since some people regain enough control to walk a bit after spinal cord injury.
And don't even get me started that not being able to walk is in most cases the least of the physical problems, challenges and consequences wheelchair users deal with on a daily basis... Or that everyone is just temporarily healthy and able bodies - because sooner or later age will take away our mobility, hearing, eye sight, cognitive functions, speech or ability to eat, taste, smell. But the young people who build this world and make it inaccessible by default are not aware of that. This should be taught in school so everyone would better understand accessibility and the implications of long term health issues. We would all care much more about our own health and true accessibility of our environment.
Thanks for mentioning the whole "blindness stigma" thing. I have a blind friend that's prone to epileptic fits and non-epileptic fits. She can, for the moment, see through a tiny pinhole out of her entire visual field, but is unable to perceive colours and is reliant on lighter and darker tones. I've seriously had it with the younger Catering students (level 1s in particular) just telling me that she "doesn't look blind, so why is she allowed her dog in the restaurant?" when referring to her retired guide dog, Bertie (rest in peace, pup), who used to accompany her to the catering department for lunch. I had to explain to them 3 or 4 times that my friend was registered blind, but she suffers with a rare disease that's causing the degradation of her optical nerve, which will eventually lead to total blindness. She's got to have a carer living with her full-time, just so that if she goes down and has a fit, she's safe, so when her now-ex boyfriend moves out, I'll be moving in with her and both of our cats, so I can make sure that she's safe and help care for all 10 cats.
In fact, nearly all blind people have some amount of vision. It’s actually quite rare for someone to be totally blind which is why the blind community largely doesn’t find this distinction very informative or interesting because living their lives and knowing each other they know quite well disability is always unique to the individual. The obstacles they face and the aids that they can use are all bespoke.
I work in a carehome, and it makes complete sense when I regularly work with elderly people that are able to walk short distances but are unsteady and have to use wheelchairs for longer walks than a few feet - that not all wheelchair users are going to be completely paralysed. How people make this assumption is so narrow-minded.
This is all news to some people, unfortunately. They just don't really use their brains when they think of these things. Thank goodness there's people trying to use their platform to educate others. It gets so tiring for us disabled people to have to explain ourselves all the time :(
I'm also an ambulatory wheelchair user. People are always so shocked if I stand up or am able to walk a few steps when I've been in my chair. Thank you for helping people understand we exist
I'm finding, especially with my power wheelchair, that taking my cane along in the back pouch helps set up an expectation that I'm not totally chair dependent. And, of course, I need the cane if I need to go somewhere where the chair cannot go, like the bathroom at my church or between very closely spaced retail aisles.
It is strange isn’t it. No one questions toddlers in a pushchair - they need one because they can walk, BUT they tire quickly. It’s the same with some adults.
Do you jump up and down?
Like do you get out of your wheelchair and jump up and down 5 times like you mean it? This little miscreant can.
I don't think most " Ambulatory wheelchair users" (I bet 60 % are too fat to walk) are jumping up and down.
A lot of people need to see this. I've seen many people not realizing that using a wheelchair doesn't automatically mean that the person can't walk at all.
I feel you. Different days and different symptoms.
I’m really glad you made this. I feel like a lot of people don’t understand that people who use wheelchairs aren’t always paralyzed and completely unable to walk
Yeah, they probably are.
@@nikos-giorgoswhat does this even mean? Like no they clearly aren’t always paralyzed or unable to walk :/
@@nikos-giorgos no?? What does this mean? Some people aren't paralyzed even if they use wheelchairs, sometimes people CAN walk for short distances, or it varies! Please don't assume every wheelchair user is paralyzed, unless you know them personally
@@Mizaki_sayori
I didn't say no
@@nikos-giorgos in actuality it would probably be more likely for most wheelchair users to still have some mobility in their legs, just like most blind people still have some vision or most deaf people still have some hearing. The cases of the extreme versions of a disability are quite rare, and disability is usually a spectrum.
You might not see this, but I’m 14 and autistic and I struggle with very bad dysmenorrhea. It’s gotten progressively worse, and today it interfered with my mobility, vision, and coherence so they put me in a wheelchair temporarily. You make me feel like I’m not alone because your wheelchair helps you even if you’re not paralyzed, like me. If I end up having to use one more often, I’ll definitely confide in your videos.
Someone may have already suggested this to you, but have you been checked for endometriosis? I have had severe dysmenorrhea for almost 30 years now, and I DON’T have endometriosis, but it’s definitely something to look into if you haven’t. Also, going on a strong version of the pill and prescription doses of ibuprofen/naproxen sodium have helped me live a more functional life! Take care and be safe out there! ❤
@@misspatvandriverlady7555 Thank you!! I’ll try those :)
If it's not endometriosis (which needs a gynae and surgery to both diagnose and treat), there's other things your doctor can look for. There's PCOS which can be seen on an ultrasound. Things a gynae can look for are fibroids, adenomyosis (this is rare in young people but I had it diagnosed when I was only 19) and another one not a lot know to look for is pelvic congestion syndrome.
I'm not saying this to scare you, just want to let you know there are reasons for bad pain and they are treatable. A lot of doctors tell us it's in our heads or don't know how to deal with women's health so things go undiagnosed.
As someone with endo and adeno, see if your parents can take you to a doctor while you're young. The pain just gets worse and worse as time goes on if that's what it is. And try go on birth control in the mean time (just the pill is fine)
@@Cyntaria I’ll see if I can get checked out but I’d have to hear a lot of complaining about cost :,) it hasn’t gotten better though, and if it seems so it just comes back worse
I pray you don’t live in a state where abortion is outlawed if you live in the USA because this endometriosis treatment sounds suspiciously like what the government calls “abortion”
It’s not what we would call abortion but since when do men in government know about women shit
I really like that you made this video! I love disabled people showing off all their things and not being afraid to show their disability.
I don’t have nearly as bad of a disability as you do, but I do have dyspraxia which does heavily affect me walking down stairs. I have to take each step one at a time, both feet on each step, and go pretty slow, and I HAVE to hold on to the railings. Sometimes I’ll just ask to use the disabled person elevator at school but since it doesn’t affect my body, and I look totally fine, so they question me a lot and so I have to go through this whole explanation.
Sweetie you should never have to explain to people why you need to use a wheelchair. You are such an inspiration. I'm a woman in my 40's and have physical limitations, and to see you always with a smile and a positive attitude, helps me get up and get out there💐
It’s kinda bonkers for people to try to gatekeep wheelchairs for only *specific* type of people. Like you said, it’s a great tool. Especially for those days when you need it the most
It's amazing - i.e. frustrating AF - how people and organizations have this preconceived image of what a disabled person should look like and when you don't fit their image, their immediate reaction is suspicion and/or dismissal of your needs. I need to use a cane sometimes because of muscle weakness and nerve pain in my legs and have been accused and pointedly questioned whether I needed mobility services at the airport or train stations because "I didn't look disabled" / "I'm too young to need a cane". 🙄
And the people that are gate keeping are usually able bodied people with savour complexes. Because anyone thats disabled would never judge someone for using a wheelchair
I think it's often also ignorance from people not knowing about disabilities. Like people not knowing blind doesn't mean zero vison. Or people not knowing high functioning autism exists. There's so many things a human can have, and the media often mispresents or over exaggerates disabled people, that it's very easy to be uneducated. Ofc that doesn't excuse being rude or telling others what they can or can't do. It's good that videos like these spread awareness.
Well, everyone likes to poke their goddamn noses in everyone else's business!
It’s because we never had these “Illnesses” till now when we coddle children
I feel like a lot of people think people in wheelchairs are either completely paralyzed or faking it. There's so many reasons and some people have better or worse days that might vary the aids they need to use. I appreciate that this video is purely educational, not getting mad at the people that don't understand, it's hard when people say people are faking a disability/illness.
That's definitely a common thought, even though it really shouldn't be. I think a big part of it is how much the idea of "disability" is stigmatized - so many people think it's all amputees and paraplegics. Many folks think "I'm not disabled, I can get around well enough most days, so I'm fine."
Truth be told, I used to think like that too. I have chronic migraines, and before my current treatment they'd be very frequent and very painful. I only accepted that I was indeed disabled when it got so bad I lost my job over it. Because I was raised thinking that "disabled" was a four-letter word.
Like old people who uses grace or just something to support them. They can walk but its difficult
I gotta be honest, I really didn't know that this hybrid version of needing a wheelchair existed until some recent videos I've been seeing. I didn't think anyone was faking or anything, I just didn't realize some people only used their wheelchair some of the time or that someone you just saw walking could (without an incident or faking) be using a wheelchair the next day. It's definitely useful information and important for making sure to not judge too quickly.
@@stephaniereynolds6921 Same. Everything is news to you the first time your hear it. I'm just glad I know now. Yay for sharing information on the internet
Take a look at the video where she jumps up and down quite a bit. The Tourettes and the gay flag are definitely real. The rest is a con guys. I love you sheeple . It's like watching goldfish adjust to a new aquarium. You are in a daze bumping in to the wall like a roomba.
thank you, this validated my feelings so much, I decided to buy a wheelchair a week ago (it was a very difficult decision) but I'm still way too scared to use it and videos like this one help me realize my feelings, pain and "dynamic disability" are all valid. thank you ❤
Didn’t know this was a kind of condition people could have. Thanks for teaching me something new, so I could be more aware :)
It’s called being an ambulatory wheelchair user! Most people who use wheelchairs aren’t actually paralyzed. We use them for various reasons, like joint instability, balance issues, or chronic pain. Unfortunately we constantly face accusations from strangers that we’re faking it for attention because they saw us move our legs.
This is huge: i have third degree burns on my feet, some days i wake up in agony, done days i can walk a good distance, and other days i lose my mobility halfway through the day.
Finding people to understand this, getting help for it and even just people not expecting me to be fine just because I'm not in a wheelchair ... It is really difficult so thank you!
Thank you for sharing! I will absolutely remember this is another one of the many reasons to use a wheelchair that might not be visible to others ❤ The next time I see or hear ignorant comments about someone’s use of a wheelchair, I will add this to the list of explanations. I am in university, and a lot of young people invalidate the invisible disabilities of other young people (and people of all ages). We are in a building for education, so I will be educating them 😂 I hope you are doing well 😊
Thanks for Sharing!
Hope you find good ways to Deal and are surrounded by people WHO understand!
wait ru the guy w the tyler dunn
plates🤯
@@ruelongcha the who with the what now? Lol
the way i initially heard “sundays” instead of “some days” and was very confused on how good mobility days were scheduled 😭
lmaoo
"Sorry babe, I can't go to our date the Sunday, I'll have mobility issues, what do you think about the Monday?"
On a bright side, some days are indeed Sundays
sunday is leg day
Wow how offensive these comments are
one of the pastors at my church (we have a lead pastor and then a few pastors under him who teach sometimes) is a wheelchair user, but she doesnt always need her wheelchair. her story is so inspiring and she is a great example to the kids of the church that not all wheelchair users need their wheelchair all the time. shes also like the sweetest person on the planet, love her sm
UGH I LOVE THE FLAG BEHIND YOU ITS BEAUTIFUL 😍
It feels like not that long ago I was fighting in forums and comment sections over the fact wheelchair user =/= paralyzed. It really warms my heart to see people with all sorts of disabilities advocate for their right to use wheelchairs and take up space.
I love that you keep iterating that it is a tool. You are not defined by a tool and just because someone uses a tool doesn’t mean that they’re all the same and I absolutely love it.
Yes this 100%
I am glad you are sharing awareness, I was born with a leg an inch shorter than the other and I also have a deformed right ankle bone due to an old injury and both conditions limit my walking so I always have to use crutches everywhere I go and if I am out shopping, I sometimes feel that mobility scooters are helpful but like you I always get harassed by strangers who just make assumptions and it’s horrible. They don’t understand everyone’s backstories to why they need equipment to help them move around.
Thank you for spreading awareness on how someone can be able-bodied one day, and need assistance the next. ❤ I know I've been guilty of thinking "they're faking it" or "they shouldn't use the handicapped spot if they can walk", but that kind of thinking helps no one, and I've grown a lot over the years to better recognize that I can't know someone's health by looking at them. Nor is it my business.
I'm getting some pink and purple paint for my wheelchair wheels this weekend!! Excellent!
ooh!! that sounds so fun!
My favourite colours - excellent choice! 😊
@@Zara_Beth You are truly inspiring and comforting, and we are so very lucky to have you in the world 💖✨
Good color choice
Maybe put some glitter on the paint before it dries for extra pizzaz
Thank you! I am considering using mobility aids as every week I get paralysis in my legs and have tremors as after effects but this makes the thought of mobility aids very friendly and nice. ♥️
I highly recommend it! It will allow you to do so much more and be safer doing it. I personally have FND like Zara Beth, and depending on the day I use a cane, a walker, or a wheelchair. You can even decorate them to be more fun!
With mobility aids (and especially wheelchairs) my take on it is that if you’re considering it, it almost certainly means you need it. If you’re experiencing episodes of paralysis then a wheelchair makes sense so that you are not stuck in one place when it happens. The first time I used a wheelchair was in a fun setting that I wouldn’t have been able to attend without it, and this really helped me personally to feel happier about the wheelchair because I could associate it with doing enjoyable things rather than it just being about being too ill in that moment.
Go for it dear! If it improves your quality of life then that’s so wonderful!!
@@TheElmospoon thanks for your comment. You made me realize how much fear has been holding me back from getting a mobility aid. Reading your comment made me cry.
Don't be afraid of getting a wheelchair. It will make your life so much better and easier on the days you need it. My mom refused a wheelchair, and suffered every day for about the last 15 years of her life. She needed a morphine/Norco/naproxen cocktail to get out of bed, just to hobble all hunched to the bathroom, but "didn't need a wheelchair"! 🙄 I inherited her spine, and when mobility issues began to get me, I welcomed the use of a wheelchair in my arsenal! The option to relieve the physical and psychological stress when needed has led to me maintaining more mobility for longer. I can usually walk into a store to get a ride-on cart, as long as I'm medicated, and have a regular cart to lean on. I rarely need an assistive device around my house. (I do have strategically placed seats, however, lol!) And on my really good days, I'm almost normal. (Other than not being able to walk distances longer than a half block or so, or stand in place longer than a minute before my legs give out. But other than that...😅)
I cannot fathom how some people think that someone might be faking their disabilities, faking something like that must be extremely exhausting why would someone do that all day?? People are really weird...
People do it for attention.
I also use a wheelchair sometimes. Some days I can walk fine even if it’s not for as long as most people. But some days my limbs are too numb and weak and I’ll end up falling so it’s great to have a mobility aid to help so I can still go places and do things with a bit of assistance.
We need these kind of videos to educate people about disabilities! Im legally blind and use a white cane in some situations but not everywhere. I can use my phone and can read and use a computer normally. I have a tunnel vision, so moving around is harder. People usually think white cane users are completely blind, but that is so not the case! Thank you and I hope you have as much good days as possible❤
not a wheelchair user and don’t really have anything to say, but commenting for the algorithm because seeing these types of videos has been really illuminating and I wish the world was better informed about disability
Thank you for you kindness and showing us how you live your life! I have gained such useful knowledge and appreciation
For those who are uneducated. Not all wheelchairs users are paralyzed in fact most aren’t!
Thank you for the PSA! Those of us with "invisible" disabilities whose "ability" varies are often subjected to unkind judgements from people who just have no clue. Like you, some days I can clean, walk briskly, grocery shop, practice piano. Other days ~ often a week or longer, I have difficulty dressing or accomplishing much of anything beyond reading and resting. Keep up the good work, Zara! 🩷💐🙏🕊️
I love seeing more conversations about how disability is not a straight line, but full of good days and bad days. Also, your outfit is super cute! I absolutely love it!
This isn't representative of the "invisible disability" experience at all though, for many of us, our "good" days include having enough energy/being pain-free or symptom-free enough to barely make it through an average day. I don't know anyone whose "good days" include them being able to participate in gymnastics or even yoga.
@@emilyk1109just because your good days don’t look like hers doesn’t mean she has an invisible disability, everyone’s days look different and I promise you not all of her good days look like that. My good days can be me successfully getting out of bed to me skiing down a mountain, doesn’t make my disability any less invisible
@@grimsyn8174 An invisible disability includes everything from diabetes to asthma to crohn's to arthritis, ADHD, autism - it just refers to conditions where the affects people are not always immediately recognisable as not being able-bodied or neurotypical, in contrast to conditions such as trisomy 21, missing a limb, ALS, etc.
@@emilyk1109, how is any one person's going to be representative of invisible disability as a whole, when there are hundreds of different diseases causing hundreds of different kinds of disabilities? I wouldn't even claim to be representative of people with my own disease, since there are varying degrees of severity.
That's kind of the point. Many people have the idea that the only people who need a wheelchair are those with paraplegia or otherwise need it full time. The more people with disabilities tell their own stories, the more people will recognize how much diversity there is. And the fact that her disease doesn't "fit the mold" is all the more reason to tell people that the mold, whatever stereotype they have in their mind, doesn't fit everyone.
@@emilyk1109 . . . .how IS Not IT representative?! IT IS literally her experience and IT IS my experience!!! You are trying to gatekeep that only your own condition and those Like IT are valid!!!
Dependend on what exactly your condition IS, how much Variation you get between good and Bad days varis Willy and neither IS more valid then another. Just because her good days are from what IT Looks Like better then yours, does Not mean her Bad days so Not require her to use a wheel chair to function.
I am pretty much every day in pain, even the good ones, still I can Go riding or skiing on good days while in Bad days I barely managed the way to my bathroom twice a day, and cooking and eating are Not even considerations . . . . .Stop acting Like your experience IS the only valid one!!! On my worst days I would Not even BE able to move in a wheel chair , but on good and medium days you would Not notice cause I mastered pretending ITS alright even If I am an a Lot of pain and dizzy
God loves all❤😊
You’re so gorgeous girl!
Have a blessed day❤
Almost all of your videos I like immediately, because you’re a great creator and I don’t want to forget to like. Then I always, without fail, like a second time because your video strikes me in a way that either helps me understand or brightens my day. Keep doing you, blessed be.
I pray more people learn that you don’t have to be paralyzed to need a wheelchair and that’s okay!
I can relate to this very much. I was diagnosed at 20 with a form of arthritis called Ankylosing spondylitis. Some days I’m perfectly fine and can walk normally, but during flare ups I could be falling down, crawling, or not being able to walk properly. My mobility becomes very limited during flare ups. It’s hard to explain that to people since I don’t need the support 24/7, but I’m glad your videos exist. You are truly amazing for being an advocate for not only people with disabilities, but for young people who suffer as well. I’ve avoided uses crutches and canes when I need them due to others judgement, but I’m realizing that other peoples judgement shouldn’t stop me from doing what I need to do to help me feel better. You’re the best ❤
I get it. At 26 I needed to use a cane, but was too self-conscious to do so. By the time I was 27, my spine had suffered from my offset gait and things only got worse in the years that followed.
Somedays, I could walk a mile while other days I can barely make it to my mail box. And the confusion and judgement from neighbors or strangers really put me off. Some even made accusations of malingering.
But, I digress. My point to you was supposed to be, use a cane when you need to use a cane. Your body will suffer at other joints and muscles if you don't supplement the framework your body was designed to have. Don't worry about other people. Someday, they will probably experience similar issues and finally understand. But, that's not your responsibility. Just keep on keeping on! 🙂
I love wheelchairs! They remind me of the book, “Hummingbird” by Natalie Lloyd!
Thank you for this insight! This is why you never judge a person who doesn’t fit the “typical” view of what you think a person with certain disabilities looks like or needs. It’s a spectrum and everyone has different needs. It’s not for anyone to judge!
I also have a neurological condition that effects mobility, it’s so nice to see someone who has good and bad days. It’s hard when some days you need a mobility aid and others you don’t because people judge you, think your faking.
Thanks for spreading awareness ❤
Thank you so much for this. I don’t use a wheelchair (yet, decently likely I will in the future) but I use very obvious leg braces to help me walk and reduce pain most days. People look at me weird when I don’t wear them and they’ve seen me wear them before and it gets so annoying. “No, Janet, I’m not faking it, I’m just walking a little bit to the cafeteria, I don’t need them for this 🙄”
I wish you have many more good days than bad. I'm stuck at home due to many, many chronic conditions. On days when I have to go to the doctors I use a walker with a seat. Thus started in my 30's. It's hard for me to get updated diagnosis, because it's so hard to get to specialists. I have gained weight even though I eat very little. People automatically assume my weight causes the issues. I had these chronic issues when I was thin also. I'm so tired of people who don't know commenting,"if you just get into shape your problems will go away". It breaks my heart. I wouldn't put food or "laziness" over missing out on doing things with my kids. Thank you for this video. 💖💖💖💖💖💖💖💖💖
I love your content and may God be with you in your struggles
Thank you so much for making this ❤️
I deal with all of that too. I’ve considered getting a wheelchair or at least a rollator, but I only ever use a cane. If that’s not enough support I tend to use the wall and stay in bed most of the day. I’m living on my own though so I need to get up at least a few times in the day, and sometimes I worry about accidentally really hurting myself. I just feel quite isolated and I get anxious going anywhere. This is partly because I’m afraid that when I get there I will burn out or have a flare up. I think a wheelchair would be really helpful, but I don’t feel “disabled enough”, and while I know that’s internalized ableism it’s a hard thing to work through. Your video helped me to feel less alone, and more deserving of medical care that could really improve my quality of life. So thank you
Rollators are easier to transport, and are good if you just need a place to sit every couple of blocks or so. If you have problems walking distances, get a wheelchair first, as it will save you time and energy in the long run vs a rollator.
I have both. If I feel ok to walk "distances" (relative to my general level of mobility), or if there's only going to be a bit of walking where my hands will pretty much be free (not pushing a cart), I will use my rollator. If I need to go great distances, or stand in line, or have to do something *that day*, but I'm not too stable on my feet, I take my wheelchair.
Also, if I go thrifting, my rollator is clutch! I can put the basket on the seat, sit and take my time (and actually shop!) when I need to, and I can't buy too much at a time! 😆
@@wreconteur13 Thank you for this! It was really reassuring and helpful to read your comment. It helped me to more clearly think about what I might need for different days, and it helped me feel more okay with needing mobility aids!
I’m mainly commenting here for the yt algorithm because more people need to see this. I have clinical ocd-no, not the “quirky” kind every other person and their moms claim they have-and it’s really hard when people don’t take it seriously. Due to so many people being like “I have ocd, I HATE being disorganized hehe!!” no one understands how bad it can really be. On bad days I can’t even get ready to leave the house. The clothes aren’t touching me symmetrically, I didn’t brush my hair correctly so I need to do it again, etc etc. Thank you for spreading awareness of invisible/fluctuating illnesses like this. Major respect to you for continuing to do what you love and thriving in the face of a challenge. And btw your room/outfit are so cute!!
I also struggle with OCD and no one really understands so I don't usually tell people. When I was a kid it was a lot more obvious as I had physical compulsions all the time and I'd cry in class due to horrible intrusive thoughts. After lots of therapy I stopped having regular compulsions (physical ones anyway) and I pass for "normal" but the intrusive thoughts never went away but I couldn't get help as they weren't visible.
The worst my OCD has ever gotten was invisible to everyone, I had intrusive thoughts every few seconds, insomnia because I couldn't get rid of the horrific things playing out in my head, constantly spiralling and genuinely hating myself and feeling like I'm the worst person in the world (it was only when I did research and found out that it was a subtype of OCD, I could finally get help). It was one of the worst times in my life and if I told anyone I was really struggling I'd just get told "that's not OCD you're not tidy" or "yeah I have OCD too I love cleaning ". Obviously OCD is such a complicated disorder and there are so many different symptoms you can have at any one point but in media it's always shown as quirky or cleaning disorder and not this dark shadow hovering over our lives. I wish you all the best and I really hope your compulsions improve (there's no cure for OCD but it honestly can get better)
I get what you mean, I've suffered with OCD since I was a kid and I'm in my late 20's now
I remember someone said to me that "everyone is a little bit OCD", no they're not. It's a compulsive disorder and can be extremely debilitating.
I have to keep doing rituals because my head screams at me that if I don't I will die, or become severely ill
I've become injured because of it and even made me consider su!c!de because I couldn't cope.
The constant invasive and intrusive thoughts are exhausting and terrifying.
I hate how it's been made to be cute or quirky or something that isn't so horrifically debilitating
I'm autistic with OCD-like compulsions. The best example I can think of off the top of my head is needing to do certain things in threes.
@@systematicirony666 I have to do things in pairs of 4 so yes I 100% understand
THANK U SO MUNCH FOR SPREADING AWARENESS BECAUSE IVE BEEN CONFUSED ON THE WALKING PART BUT NOW IK THANK U SO MUCH💗💗
I love your positive attitude about reality.
I have mad respect for you.
You’re so pretty!! I have a good friend who’s in a wheelchair who put stickers all over it and she has rainbow sticks on it (the things that keep the wheels together)
Spokes! 😁
You know, I feel similarly about my mental health. On some days I can do mental/emotional gymnastics and on others, I could use a mental wheelchair.
It’s great, that you have it so you have more energy for other things than walking and you keep safe ❤
I like your concept of a mental/emotional wheelchair/gymnastics. Big felt.
I learned something new today. Probably should've assumed there are folks who have differing needs for mobility depending on days but never really thought about that.
Im like this too! I wish more people understood we have different days
I’m so grateful of you sharing your story. It’s helped me understand myself more ❤️
This is really valuable. I had a housemate with chronic arthritic pain. On his good days the neighbours would notice him and decide he was a fraud.
Thanks for posting this.
I’ve been subscribed to you for a while and I haven’t seen any of your videos in so long this is the first time in a while. Thank you so much for spreading awareness because I’ve learned so many things from you that I’ve never learned in any area of my life and I’m grateful I know more🤍God bless
as someone dating someone currently trying to get a wheelchair because he needs it sometimes, thanks for making this video :] when i was younger i really didnt understand that wheelchair users didnt have to use a wheelchair all the time so its awesome to see people spreading knowledge like this that can really help wheelchair users and disabled people in general be less ostracized in society :D
Have you considered doing a comparison vlog of good mobility days vs. bad ones? Many people seem to struggle with understanding how mobility can change from day to day. Keep advocating and teaching, although it shouldn’t be your job to have to educate the masses, you are doing and incredible job. Keep being you, you’re doing amazing!
"I'm generally just very unstable."
Same, honestly.
Yay I'm glad to see you doing what is easiest for you and you trying to live your best life everyday . I'm so proud of you 🥰🥰🥰
You have such a beautiful personality. Thank you for the educational and interesting videos. 😊
Your clearly a beautiful human being.
She's sooo prett5
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I so wish I had a wheelchair for the days when I'm in extra pain and my joints are stiff and trying to make me cry. Preserving as much energy as I can for my shifts at work would be a godsend, my seated walker can only do so much 😢
YOUR SO PRETTY!!
your wheelchair is so pretty!
The weirdest thing to me is people who like...refuse to understand this?
I'm lucky enough to have legs that generally work as they should but I have other issues (like random heart fits and sometimes my body just. Won't move.) and it's easy for me to imagine a life where I'm in a wheelchair most of the time but occasionally I can like...stand to get something or walk to a toilet or whatever.
Second disability awareness video I've seen today ❤ Love this! And it's Disability Pride Month right now 🥰❤
I find it crazy how it was only recently that I found out that not all wheelchair users l are completely bound to their wheelchair. Thanks for the information.
I so appreciate your outlook and your willingness to educate us. Thank you!
There is still a lot of people in the world that doesn't understand some people aren't always wheelchair bound.
I was one of these people until I saw my very diabetic grandma get too exhausted by just walking 20-30 steps. When we go out, it's better for her to just be in a wheelchair. At home she just walks fine, goes to the bathroom and bathe. Her mobility was limited by time
Today is a bad pain day for me and recently I went on vacation. We were walking around a lot and I had to go up and down stairs. I have been thinking about getting a chair for awhile now, but this vacation sealed the deal. I appreciate you and other people similar to you spreading awareness about not always needing a wheelchair or being capable of walking but sometimes needing extra help.
I'm not a wheelchair user, but I'm so thankful for this video, because not enough people talk about how levels of disability can fluctuate day-to-day. I do my best every day, my best just looks different sometimes.
You're videos are very helpful because I'm a part time wheelchair user too! 😊❤️
This is a great video. Using it to share with my friends and family thank you.
Thank you Beth.
I had not realised that some wheelchair users have variation in their abilities.
So, your video is very helpful.
I originally only used my cane on my really bad days… but then I started using it on the not so bad days in order to help prevent and delay the bad days.
Thank you so much for your advocacy! I tend to have to rent out wheelchairs at places (amusement parks, museums, nature trails, etc) since I have to make sure I don't over-exert myself (bad guts, bad back, bad joints, bad time) and I'm glad that no one's tried to tell me that I'm too young for the chair/I should give it to my grandma instead (I do, actually, sometimes I feel okay enough to walk for a bit and when I do she takes a turn) because if they did good lord I'd try so hard not to go off on them
I can relate to this, I've had trouble walking for around a year and a half now, sometimes falling dozens of times a day. It's only now being properly investigated, but there's a high probability of me relying on mobility aids in the future.
I really like you sharing your experience, it makes the whole thing seem less scary and intimidating. So, thank you.
She really pretty
Yes! Thank you for talking about this. Im scared all the time about my wheelchair as my body reacts to different enviroments. I've had multiple doctors try to take my wheel chair away when im in office or hospital
This is proof that a lot of ableists who only are because they're unaware of how conditions like this work could use. Because this is true for more disabled people than mist people know about. Unless you're actually unable to ever use your legs, most are able to at least stand or walk short distances. And in cases pike yours, some days it's actually fine for them to do lots of things. It all depends on the day and the situation.
And the same goes for mental disorders and disabilities. Some days mental disorders don't affect people who have them much, some days it's really hard. And ableists need to learn the fact that no matter your disability, there are good and bad days. And they can't assume from seeing a disabled person on a good day that they aren't disabled at all or that their disability isn't worth a disabled accomadation at a job or a parking spot
It's so sad that people have to justify using mobility aids
If it helps then it helps and it's wonderful that they exist
Thank you so much for letting people know that you don't have to be paralyzed or an amputee to need a wheelchair
I don’t use a wheelchair but I do use a brace and cane on the rough days, thank you so much for talking about it
Thank you for explaining! I never knew how much ability can fluctuate.
For anyone who would benefit from mobility aids, but feels like they aren’t ’disabled enough’:
Wheelchairs, canes, rollators, etc are exactly like glasses. They’re a medical tool meant to improve your quality of life. Ignore the cost situation for a minute and consider: If you had bad vision, would you refuse corrective lenses?
With that said, I’m wishing everyone a good health day! We may not always get them, but we sure as heck deserve ‘em lol
Okay I love them I have to like, comment and subscribe
Bad and good days... A concept that is impossible to explain at my workplace, sadly
Sidenote - what a magnificent eyes you have, and a softest voice accompanies them so well
I’ve been considering getting a wheel chair, and I didn’t know you could customize the spokes!! So cool!
As an able-bodied person, thank you for giving us these insights and explanations. As someone who doesn’t share this experience, it can be difficult to understand it from outside, so this helps me a lot to be more understanding toward people with disabilities ❤
Her wheelchair is so cute, love the customization!
I love that you do this. I have arthritis in my knees and have accommodations at school. I also have good and bad days. Sometimes at school I get bullied because of it. Not anything bad just comments on the extra time between classes , ability to not do stuff that hurt my knees, and when my legs are shaky . I watch you when I get home and it makes me feel better. Thank you.
Some people really need to realise that wheelchair user ≠ paralyzed
I too am a part time wheelchair user. I'm a ton older than you, and my upper body is a bad as my lower so my chair is powered. But I'm always in my chair if I'm going into larger stores like Walmart somedays I may be able to walk for a dollar tree. I find lots of people scratch thier head if I come in using my chair but have no issues standing up to get an item off a higher shelf. Lol that's one of my biggest complaints of just using a "store power buggy" I hate getting looks from strangers. Love your content!
Omg u look like my best friend!!
It was so sweet to suddenly see my best friend with different hair and eye color:)
So cool you're able to do gymnastics! I was a gymnast as a kid and I think it helped a lot with my coordination and vestibular issues (I was generally pretty clumsy as a kid and bumped my head a lot lol).
You do what you need and feel good in!:):)
Stay safe and keep doing you!:):)
Many of us didn't know that disabilities work this way, so when we've encountered it, we get confused. Gatekeeping is bad form, but the confusion is common.
Yeah, i became a more compassionate and understanding person as a result of learning. I mean there were other causes like aging, life experience, therapy, and great friends. But yeah learning stuff also helped a lot.
The real problem comes when uneducated people see someone in a wheelchair move their legs and absolutely blow up with accusations that they’re faking it.
The fact that I’ve never known this until this video (and by this I mean EVERYTHING in the video) shows just how bad the media is about these different mobility aids.
I love your room and the flag is so nice hope you have some good walking days in a row are you able to swin btw