3 YEAR WHEELCHAIR BIRTHDAY?!! 🌻✨
ฝัง
- เผยแพร่เมื่อ 6 ก.ย. 2024
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#chronicillness #disabled #disability #neurodivergent #wheelchairlife
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⭐️ instagram ▹ / zara.bethx
⭐️ all socials ▹ portaly.cc/zar...
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BUSINESS EMAIL ▹ enquiries@zarabeth.co.uk
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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/fn...
4. What is Tourette's?
‣ www.cdc.gov/nc....
5. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
6. What filming equipment do I use? 📸
‣ main camera - amzn.to/3MW7v8w
‣ tripod - amzn.to/3P7G8Ly
‣ vlogging camera - amzn.to/42CBQ1G
‣ mic - amzn.to/3qD5gjg
‣ wireless mics - amzn.to/3X2RxOE
⭐️ TH-cam Setup + Equipment ▹ amzn.to/42QmxCN
⭐️ Recommended Products ▹ amzn.to/41wXJPX
(not sponsored! but these are af links so i make a cut from any purchases💕)
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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!
![เกิดใหม่ทั้งทีก็เป็นสไลม์ไปซะแล้ว ซีซั่น 3 - ตอนที่ 69 [ซับไทย]](http://i.ytimg.com/vi/QuodflInQT8/mqdefault.jpg)
Thing like this remind me that it’s important that we remember nobody is “confined” to a wheelchair. A wheelchair means freedom for so many people. I’m so glad you were able to get a custom wheelchair!
Freedom and better quality of life overall 😊
I remember one of my patients as a student nurse was a quadriplegic who had a small amount of movement in one wrist, but was otherwise full care. They were extremely optimistic and bubbly but you could see on their face that they were just masking. The next day, their parents (primary carers) came in with their wheelchair and their face just immediately lit up. It was a motorised wheelchair which they could freely control with their one good hand. They were so excited about going for a walk and the moment we transferred them via the hoist and removed the harness, they were off. That smile on their face was infectious and you could just see how much better their quality of life was, even in hospital as a full care patient. They still needed their parents with them if they went off the ward as they can't operate the lifts, but it meant when their parents were off the ward, they had freedom to leave their room and get a change of scenery. They were no longer confined, they were free now that they had their chair. They went from someone who needed help with everything, including repositioning in bed and adjusting the bed, to someone with so much more freedom and independence. They only needed assistance with toileting, eating and getting back into bed to sleep. The happiness that patient expressed when they had their freedom back still sticks with me over 4 years later.
Spot on! Mine gave me much more freedom, I began to feel more like a regular person (doing regular people-things) and it was a huge boost to my mood and confidence after a really trying time. I think most people avoid using the term confined now, thankfully. Though I also hate handicapped, cripple and the r word. I still hear those. The looks of pity were a bit interesting at first, but now I say don't feel sorry for me, I'm enjoying life! I have more freedom now than I have in at least a decade.
It can definitely be hard sometimes to remember that aids are not what confine disabled people, because a lot of the time they're the visible markers of a disability. But having them makes such a huge difference in our lives, and having ones that are customized are just that next step better.
Not mobility related, but my first ever hearing aid I had as a little kid had a purple mold (the part that goes in your ear itself). I was so excited that my hearing aid was so pretty, and showed it off excitedly to all my classmates. It helped me a lot emotionally too, because my hearing loss fluctuated a lot as I grew (the size of my skull changed the way I heard, and even from one day to the next I could hear better or worse), so it was a pretty scary and confusing time for me, and having something I felt in control of and excited about made a world of difference. Having a cool deaf dad also helped because he gave me so much support and comfort, and hearing loss was really normalized for me, so I was just excited to be like him rather than ever feeling like I should be embarrassed. Even as an adult, I still am proud to be like my dad.
I don't always wear my hearing aid now, even though I probably should (my hearing is much worse now, but I get sensory overload from sound really easily), but I still remember that little purple hearing aid so fondly. My current one is a boring color that matches my hair to be hidden, but frankly I'd take a cool looking one over an invisible hearing aid any day.
The custom one looks so comfortable and helpful!
super hapy for you zara and the pink bits on the foot rest bars are super cute hope you are having a nice day
@Zara Beth thanks for the hart again
As a young person with FND and other neuro disorders that make me unable to walk, it’s really helpful to see people like you post about having FND. It gives me hope that my life can be manageable one day.
Having a mobility aid like this can make a world of difference 👍🏻 I’ve got ME/CFS & some of my fellow Spoonies use wheelchairs. I don’t at the moment but might need to do so in the future.
It’s encouraging to see how helpful a wheelchair can be. Wheelchair use should *never* carry a stigma, it’s just another mode of transport!
Hey hey, ME/CFS patient here who uses a manual wheelchair full time!
@@pip5667 I see you! Happy trails!
ME/CFS here too.. I'm 35. But I'm worried when I need to use crutches or if I used a wheelchair, people will think I'm "milking it" or"faking it". I know I shouldn't worry about other people's thoughts but it bothers me so much. Is this something you experienced? Or thought you would?
@@JoMarston-sr1sd I'm 19, have used a wheelchair full time since 16, am not visibly disabled but have moderate-severe ME CFS and a few common co-morbidities (POTS is one of the main reasons I went straight to a wheelchair rather than using another mobility aid first). The vast majority of people won't comment on it. Seriously. Ive had one person outright claim I didn't need it (after living together for a few weeks) and I lived in group homes for 2 years so I saw a LOT of people. That 1 person? Had EDS too, but didn't use mobility aids, which caused their judgemental ideas. Had their own serious issues too, like "just out of juvie" issues. Was like 15. They were NOT the norm.
I'm happy you could get it.
But sad that you had to do it all alone.
Because it's my job in Germany to deliver wealchairs and measure the optimal dimensions of them.
And then you only need to pay 10€ for it, because our free helfcare pays the rest.
Damn, I love everything you wrote
Oh I can already smell the comments like "you pay it with your taxes".
Yes we do, but still less than Americans would. Because the state knows how expensive a service is supposed to cost. Some of them are even mandatory to cost a specific amount that gets corrected each year. If your service does cost more, neither the state nor the customer will pay for it and if you try to enforce your prices, your license as medical service provider will get revoked.
As god intended
One could always get a out of wellfare service obviously
I also have FND and im currently struggeling with it i missed so much school and im constantly tired. I also have your symptons of not being able to walk. Im currenly healing and im very lucky to have the blessing to be able to "walk" again. I just wanna say stay strong and that ur staying happy gives me a bit more power to heal thank u. I also think its good ur posting about ur FND im so happy that there are more ppl like me and im not alone.
Zara you inspire me. I have spent some time in a chair myself and have other health issues the last 2 years. I am struggling. And all you do lefts me up, and plus your adorable and I love your voice.
I also have a similar condition to you. We thought it was Tourette’s syndrome, but a professional at Phoenix Children’s Hospital diagnosed me with an FND. I have one tic where my legs will wobble as I walk and make it difficult for me to be mobile sometimes. Thankfully I don’t need mobility assistance, but it can get very painful at times. The worst part is that medication doesn’t do anything.
Wait, I thought I was the only one. I used to get full paralysis and everyone thought it was a tic (what made it worse is i actually have tourettes). They stopped for 2 years and started again but worse (seizures) and I recently found out it was FnD.
@@idontactuallyknow1755 A lot of kids who gained their tics (typically AFAB people) during the pandemic also have FNDs.
@@EmmQ34 yo as a transmasc I really super appreciate you saying AFAB instead of just going "ah yes, females/women only", like it's just so refreshing to see and actually has become the highlight of my day. Thank you 💚✨
@@DrummerrDuckie I’m transmasc too, that’s why I said that, lol!
I love the fact even wheelchairs are customisable! Yours looks so nice!
I’m so happy for you to be more independent. Your smile is bright and so is your future! Wishing you the best!
So happy for you! 💖
As a french, it's weird to even think about buying a cheap wheelchair, cause here you automatically have one for FREE when you quit the hospital, so yeah, you're ending buying a custom one with only a part pay by state if you're paralysed for a long time, but you'll never buy a classic cheap wheelchair here.
And it's the same for crutch, brace, even some custom brace made directly for your form and needs are free with our "carte vitale".
When I see some for sell, I wonder why someone will need to buy that in Europe, cause it's usually free, even outside UE.
Jealous, but also really happy for you.
I’ve paid so much for braces over the years to keep walking, and the hospital ones were expensive and terrible, everytime. It wasn’t even an option most of the time but when it was it wasn’t good.
I have similar symptoms to you, though they are not as bad as they used to be, they are once again getting progressively more frequent and Ive been waiting for 3 years now to get a diagnosis. Im finally accepted to see an neurologist in 2 months and I'm really hoping they can help me work out whats wrong and give me some extra support.
I am sometimes unable to complete tasks by myself such as cooking and walking the dog as I cannot stand up straight for longer than a few seonds. I do my cooking on the floor from now on. My work has also tried to fire me multiple times since I dont have a diagnosis and they accused me of faking my symptoms.
Your videos remind me that im not alone.
I'm so happy for you. Getting your mobility back is life changing. I'm working on getting my mother one.
I'm so happy you have something that works for you
Happy custom wheelchair birthday!
Two days of me having my first chair, the requisite cheap amazon chair lol, and its already given me so much. i can't wait to get a custom chair that's really for me. Your videos helped me accept needing a chair and truly see all the good things that are coming to my life now that i have one.
:):)Nice that your wheelchair gives you freedom. You seem positive when you are using it. Not seeing it as a negative thing(i hope for you), but seeing it as something that gives you freedom.:):)
Love it! I've had my power chair for a year and a half now, and it has radically changed my life. I'm also an ambulatory wheelchair user, and I didnt want to move to first, my scooter, then my chair. Initially ended up with a manual chair, but I dont have the arm strength to propel it, so I couldnt go anywhere without my husband or son to push me. With my power chair I can go and do whatever I want independently. Love my chair!
I'm glad you were able to get a chair that fits you just right! ❤
Super cute wheelchair
Oh, i understand now why your videos keep being shown to me. I also have FND. I hope it calms down for you soon. Its like waves in and out for me.
That’s great. Glad to see you have the support with practical things to help you live life
So happy for you having the custom chair! I'm an ambulatory wheelchair user too. My first one I bought off a second hand site, it was also a heavy, folding wheelchair, because I wanted to be able to leave the apartment with my family. After using it for a year, we set up a Go Fund Me account for help with getting a custom wheelchair and NuDrive Air (lever system to manually push the wheelchair myself - with brakes!) and was able to get both with the amount we saved, the Go Fund Me raised, and what was given me by our church. It was a life-changer for me! I have an autoimmune disease that attacks my spine.
Thank you for making this video, I love hearing you talk about things. I would describe it as a little party 🎉 because you talk about interesting things ❤
My sister is disabled and she have ticks I really love how strong you are and you dont give up.KEEP GOING GIRL I LOVE YOU!!❤❤❤❤❤❤
Wrong tic dude tick is like a dog thing and Zara isn't an animal
Look at you now! You go Girl!
You sold that so well you made me think "yeah, I totally should get a custom one too, that looks so much more comfortable!"... bru I don't need a wheelchair.
Good for you! Glad you found that!
Where did you get your custom wheelchair from? I have been looking at getting one because my health is not great most days
You can look at activ wealchairs.
Or by Ottobock, Myra, Sunrise Medicel.
I’m looking into my first custom… any advice? It feels a little overwhelming with just how custom it can be
It still looks fabulous
Congratulations on all your wonderful outstanding videos you are truly amazing I'm so proud of you keep up the excellent work keep sharing your dazzling smile and keep reaching for the Stars you are an athletic angel 😇😇😇😇
i’ve always loved the pink on this one 🥹 and YES this does count for a celebration because mobility aids are actually amazing 🙌 so HAPPY 3rd BDAY WHEELCHAIR ty for the life changing support you’ve given zara 🎉🎉
Happy birthday to Zara's wheelchair hehehe but really im happy it gave you freedom and independence 💓💓
Yeyyyy happy anniversary !
I am so proud of you 😊
Both of my girlfriends little brothers have FND. It’s so nice to see representation for this!!
Happy Mobility Birthday! ❤
yay :D exciting (i love your wheelchair it's so cute)
That's cool Zara I'm so happy you are able to get around better you are a very intelligent pretty inspirational girl 🥰
I'm at the beginning of this process. I've just bought a cheap chair from Aldi, for the days that i really should do things, but my pain is too bad. I haven't used it - yet - but given how cold this winter is shaping up to be, I'm pretty sure I'll be getting LOTS of use out of it. I'm dreaming of getting a better one, or a motorised scooter, but, well, gotta start somewhere.
congratulations!!!!!!
Omg!!!!❤❤❤ nice wheelchair!❤❤😊😊 I’m so happy for u 💕💕💖
I got my first walker a week ago ^-^ I'm really glad i got it, and it helps me when i go out and need to sit
Glad to see you are better
Me, an ambulatory wheelchair user needed it 2 years ago SO much bc i could barely lay in bed without pain and wanted to go out but now, i can walk but not that long and dont use a wheelchair that often and the problem is i just got my wheelchair now even tho i neeeded it 2 years ago
I’m gonna be talking to my rheumatologist in May about me getting a wheelchair cause my chronic muscle and joint pain is so bad and I’m really nervous he’s gonna deny me :(
So happy for you! FND warriors together ❤
I have one of the cheap ones. Can't wait to get a custom one x
that's awesome that you got one that's right for you specifically 👌
love this!
I have a wheelchair from Amazon and it was like 150USD, I hope I’m able to get a custom wheelchair in the future because I want the best mobility I can get
Seeing your clip of your first chair being at the same place my boyfriend took me when I visited … my heart
Just discovered your channel. It is very good . My son has epilepsy but doesn't always need a wheelchair. The consultant defined his need as complex, sometimes full of beans sometimes very weak, Anyway, I find your uploads helpful and interesting. I'm sure there's lots of tears but you seem very positive 😎👍
I'm getting my first ridgid chair tomorrow!!
I have the same thing you have even one time I was in school and did the middle finger to my teacher cause I couldn’t control my self 😂❤
I'm seeing a huge number of comments about people originally being diagnosed with Tourettes having FND, and I wanted to share something amongst this community because I need to get it off my chest.
I was originally diagnosed with Tourettes. Was on and off medication for YEARS, till my symptoms I was having got so bad that I was like "Is it my medicine Im on??"
I found out that Abilify gave me non epileptic seizures, and so did some others (like Bupropion, Depakote, and a few others). I didn't have these seizures before taking any of those meds!!
I say this all to say: there seems to be a pattern Im noticing. I met someone too who had non epileptic seizures, and also had Tourettes and was taking abilify.
Is anyone here concerned FND is just a long term issue from that medication?? Ive been off all meds of that sort since last December I believe, and I am now starting to notice my PNES going away. 😮
My PNES was gone for several months, then more recently I had 1 or 2. I also found that eliminating lactose, acidic foods, and caffeine, as well as getting my GERD under control with PEPCID helped me?? As well as vitamins, as I have Narcolepsy too.
This isn't a one size fits all thing, but if anyone relates talk to your doctor. They don't know much about FND rn yet, so if it could benefit you discuss it!
Also, this isn't to judge you or say it's not possible for us to be different, but I've noticed I'm getting my mobility back and becoming less and less sensitive to light and noise.
I used to have the non epileptic seizures every time I got hot or ate, as well.
This might give someone some insight.
A custom wheelchair truly makes all the difference! Like between a Volkswagen and a Porsche. 😅
How did you get a custom wheelchair??? I have a wheelchair similar to your first one but it's way too heavy for me and I really want to look into a custom one that looks like your current one. I have severe feet pains and cannot walk for more than 15 minutes, and I am also a very weak person (with currently a bad shoulder). Is there a company you worked with or did you get it through the NHS or??? I really need to know!
so happy for you!!
OMG I LOVE YOU ❤
Hii!! I have tics but not Tourette’s I just have tics. My neck one kinda hurts sometimes it’s like I have to stretch it in the right spot ❤
How did you bring up the idea of a manual custom chair to your doctor? I’m nervous to ask mine.
My grandma sees the same doctor I do, and she won’t even give my grandma a disabled parking pass because she doesn’t think she’s disabled.
I feel like she’s really not gonna be open to the idea at all.
I didn't ask for "permission" as you don't actually need it unless they're going to fund it!
@@Zara_Beth you can get a custom fit wheelchair without a doctors referral? I never knew that wow
You go and advocate to this dr. If he or she says no GO find another dr that will advocate the insurance companies and has your best interest in their heart! It took me a bit but I found the dr that is amazing for me. I’m not going to lie it may take a bit which is a solid pain in the A**. You WILL find that dr that works for you 🎉🎉🎉
@@meganmyers1657 thank you so much!
@@The_Service_Doodlesalso absolutely report the doctor your grandmother sees (try to help her find a better as well). Idk how these non professionals even make it into the medical istg
Hi I have FND to I was wondering how do you go day to day without having a break down it is so hard going on 3 Years on March 31.
So much love to you dear!
I've decided I'm going to get the autism test! And I like there's info like this around nowadays 🙂
yea happy days❤❤❤❤
So happy for u!! Also with a person with diagnosed anxiety and ADHD do you have any stimm recommendations because my tiny fidgets dont really help i have a semsory bin but its hard to know what to take
As someone with AuDHD, I recommend a squishy or crazy Aaron's silly putty (found on Amazon, target, toy stores, etc.)
Also infinity cubes are great.
I like things that I can do different things with because it can get repetitive after a while.
That's why the putty is great because it doesn't stick to my desk, it's moldable, and I can just hold it in my hand as well
As an ambulatory wheelchair user myself I am super happy for you! May I ask where you got your custom wheelchair? I really need a custom one, the one I've been using is really heavy and kind of bulky. (I'm a 4' 10" petite woman so normal wheelchairs don't fit me at all lmao)
My friend recently got diagnosed with FND. If you feel comfortable could you please share some of your experience. I know everyone’s experience is different but I think hearing from someone who’s been diagnosed for awhile would help me understand it a bit more. Thank you so much
Your beautiful
i have to ask where did you get the frame protector covers! they’re so so cute and the perfect pink!
I'm also an ambulatory wheelchair user and it's so nice to have a chair? Like,, I'm a theater major and it was so nice to be able to actually. do a very high energy comedy show and have fun? Before I started college I did a lot of the shows while I was in highschool, but had to drop out of a lot of them becasue I just. didn't have the energy or the mobility to do them, which really sucked. but the director for the show I just finished was so nice and worked so hard to make sure that I could still do the show and he made it as accessible as he could, and i just. my heart Ouihgahdjk;fah :)
Awesome girl ..........
Happy anniversary 🎉🎉🎉. Hey Zara, can I please ask you something?????
Lovely
❤❤❤❤❤❤❤❤❤
🙏🏻❤️
Love the flag on ur wall
you look like princess kate
Haiii i was wondering why the bars that attatch the "foot shelf" to the wheelchair itself is so narrow (or just the whole thing in general compared to your first one) and in what way it's more comfortable for you. I do understand that this way you fit through smaller spaces but otherwise see no use in it😅
Where did u get your wheel chair I’m epileptic and I had a seizure that made me paralyzed knee down and I’d like to have my mom order one
Question, do u ever drive a car?
But also congrats 🎉
No she can't. She has seizures, fainting spells, And tourette's which makes driving extremely extremely dangerous for her and everyone else around her.
the cat is pretty cute
Ur cute btw
how did you order that chair!!
I have a question I’m not trying to be rude but I’m new to the channel what conditions do you have? I’m so sorry if it makes u feel uncomfortable
She has FND
i have
- Tourettes syndrome
- FND (which causes most of my mobility issues)
- orthostatic hypotension (my fainting/circulation issues)
and then i’m also autistic 🙂💓
@@Zara_Bethautism really likes to add some physical symptoms in there too!
@@queer_unicornautism causing physical symptoms? What are you talking about? Do you mean her weaker legs??
In my land the government provides wheelchairs and other stuff.
Don't you have that it your land?.
Wheelchair's are very expensive to buy!!
Ps I love your channel!!
Love and Kiss from me from the Netherlands.
I apologize if this question is rude, but what does it mean to be an ambulatory wheelchair user?
it means she can stand/walk sometimes and/or for short distances but she still needs a wheelchair. some people have problems with balance, or stamina, or their joints pop out really easily and so use a wheelchair
@@musicobsessive123 That helps me understand a lot better, thank you!
@@Eddie_my_love no problem! ihappy to help :)
What means FND?
Functional Neurological Disorder.
Means sometimes your brain no worky so it doesn’t send signals to some parts of your body to function properly (like her legs)
How did you know your measurements to get the right chair sizes?
by… measuring yourself?
It pink right?
They sell wheelchairs on Amazon?
Walking is so overrated. Able-bodied Two-footers don't have a clue 😅
I got my first wheelchair at 16. Doctors convinced my mother, when I was 4, that having a wheelchair would make me LAZY ...
Once I got my first chair.... I was so lazy I was never home anymore 😂 ... it was the single GREATEST moment of independence IN MY LIFE!
Walking is overrated anyway. I went through shoes once a month ... now I have shoes 10-15 years old and still look new! Had 3 surgeries on my shoulders... years of (competitive swimming, wheelchair rugby, etc) reaching, pushing my chair, lifting stuff over my shoulders, and other factors wore them down. Now I have a badass power chair and an accessible van to go anywhere I want! ❤
Whats FND?
Could you explain FND please?
Functional Neurological Disorder
Just a genuine question @Zara_Beth, from how much do they range? Im asking for meself.
Happii birday
Is that smithils farm petting zoo in the seccond wheelchaur clip ?