FND changes entire lives 🌎 symptoms can come and go, but it never goes away 🧠
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- Опубліковано 22 кві 2024
- i haven’t shared as many vulnerable FND posts recently, but my symptoms are always there however that may look on the day 🎗️
i lost a lot of confidence the past few years in posting about my seizures, my worst symptoms, the hardest and ugliest days, but i want to help others who are going through similar things and show you that it’s nothing to be ashamed of to be struggling 🫂
it is not your fault ❤️
don't forget to subscribe! ♡
#functionalneurologicaldisorder #ndawareness #ndhopeuk #seizures
#paralysis #wheelchairuser #chronicillness #awarenessdon't
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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...
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
⭐️ UA-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, UA-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! - Розваги
Invisible illness is tough. It must be so difficult to try and explain to people one day you can look like a pro gymnast (in your other video) and another day you're hospitalized... Thanks for sharing honestly
Agreed, I can’t imagine how hard it must be because some people may think you’re just making excuses. Thank you for raising awareness about your disabilities! It’s been a learning experience for me and I hope others can take something away from your videos as well
@@ProudtobeaNeurodivergent_1248 I'm still mind blown seeing her as a gymnast. It makes you think.. What I'm going through is nowhere near as bad but invisible illness really encompasses a huge range and I'm grateful to see someone else who **looks** healthy sharing this so openly 🩷
I said the same thing little bit ruder on one of the other videos and I got torn apart, but you speak serious facts right now she is a complete utter joke
@@joshroberts8546 any kind of invisible illness is incredibly difficult. Even the mental health side: the emotional impact on your life and how you're treated about it. I can see how it'd be difficult to accept unless you or a loved one has experienced something like this. A lot of people do treat you differently if you don't "look sick" or don't always have a noticeable problem.
You can see she has moments she's seemingly fighting fit and then other times when she is best to use a wheelchair. I genuinely am thankful she shares content openly and honestly. Especially if it might help awareness. If you research more about her conditions or "invisible illness" it might make more sense. I get that it feels COMPLETELY surreal at first, but there are so many things that can affect people similarly. It still blows my mind and what I experience is nowhere near as complicated.
I think she's lovely and her content makes me feel like it's okay even if what I'm going through gets worse. I wasn't trying to sound sarcastic 💔 I'm fortunate others understood me; it sounds like you and I have very different opinions and life experiences.
@@ProudtobeaNeurodivergent_1248 realized replying to Josh Roberts that you posted under my comment by mistake instead of the video itself, but hey, compared to his reply, I'm genuinely happy to see something like yours! Lmao ❤️ so thank you
You are really inspiring to all those who struggle with chronic illness. I hope you find all the support and aid to live the life you deserve
As someone who has several health issues which most are invisible really understand the struggle thank you for raising awareness
Thank you for showing the reality of chronic illness
As an MS sufferer, I am so thankful to you for sharing your experiences! You're such an inspiration to those of us with chronic illnesses. Your really helping educate so many people
Fellow Ms person here. (Among other issues)
I had two seizures in a row yesterday and a sleep attack, my class was evacuated. I got the courage yesterday to tell my friend I had FND not just tics ( before he thought I had Tourette’s) my friends are the best they really care and try to help me when I have these stuff. I hope my crutches and wheelchair come soon!!
I cried to this. Chronic illness demands so much from you it cannot be put into words. We're warriors without wanting to be so. We're resilient because we want to survive, in hopes we can live things outside of this reality people barely know about. I admire you so much. Thank you for your content. It surely inspires a lot of people to keep going, and helps us feel less alone with this 🖤
This made me cry. I have a different condition but I relate to the loneliness. I hope you feel less lonely now. ❤
I've been watching you for probably 4 years now and you've been so helpful in helping me figure out how to navigate disability and myself. I'm going into pediatric occupational therapy assistance as a career now to help disabled and injured kids navigate the world and the meaningful activities they do/want to do in a way that's accessible to them, and it's really amazing to get to help them do that. It's healing for me as well, being an autistic person who realized I had autism as an adult. I didn't have that help or that support system that I'm now able to give other kids and I'm really grateful I get to do that now. It's also been helpful to see how you navigate the world as an ambulatory wheelchair user because I'm now better able to help my fiancé. We just got him a cane and a wheelchair and it's the first time in years that he's not been in pain because of them. I'm really grateful for advocates like you helping teach people and sharing your stories. 💚🤠
Having an invisible illness just sucks! You are so inspiring!
You are beautiful, don't ever give up, you're worth it ❤❤❤
Been watching since I think summer last year. Your an incredible person. I have so much respect for you. 💙💙💙
This is very telling. Thanks for giving us all a chance to understand ❤❤
We're here for you, Zara! ❤
I was recently diagnosed with FND! Your videos have helped me to not feel so alone
i’m so glad!!🥹
You ❤ bring tears to my eyes and touch my heart . You help me to accept my own physical condition better. It is comforting to know there is someone who understands the daily battle. Loneliness and pain is the worst for me.
know you are never truly alone, there is a whole community out here who will happily welcome with open arms ❤
I understand absolutely you are not alone .❤❤❤❤❤❤
Keep going Zara. We all have your back
Good luck through this Zara we’ve seen you can do it and you know you can
I feel so bad for you I didn't know you went through this
Thank you from the bottom of my heart for your service and advocacy for our community. I’m still new to FND but have been sick since 2021. It’s been lonely and challenging and your videos help ease that pain and gives us space to sit with each other and ourselves and chat and trauma bond. It’s the best gift, love and community🤍
I recently got diagnosed with fnd. I've had symptoms for over a year now and it's only worsening. From what I can see, they are really similar to yours, and I completely relate to this duality of being an athlete one day and not being able to walk the next day.
I wish all the best to you ❤
My husband has FND, it’s definitely a bit of a roller coaster. He deals with the seizures and distonia in his feet/legs probably the most. Sometimes his muscles in his mouth seem to constrict and make it so he can’t really talk and more recently he’s had 2 episodes of not being able to process verbal communication. He knows someone is talking to him or he’s watching something on tv but he can’t understand what is being said unless he can read it. It’s been hard for him and our family but this is our normal now. Thank you for sharing your story the way you do. I showed this to him and he almost started crying. I think it helped assure him that he isn’t alone. Thank you.
Chronic illness can be such an isolating experience and it can hurt so badly to feel stuck, or left behind.
I'm trying to push through my fear and reach out to look for a community of people who understand.
To Zara- thank you for all that you do. Your content helps so many people.
And to everyone who deals with chronic illness- you are not alone.
Try to be kind to yourself x
YOU'VE GOT THIS ZARA 💖
This is so inspirational ❤
I was wondering was dystopia is, thank you!
My love goes out to you 💞 with best wishes 💌, hoping for more good days very soon 📆
All of this. Thank you, I feel so seen.
This made me feel so seen... I've got all but the seizures, we think... They won't call what I get seizures bc they "last too long"
That's some classic medical misogyny right there. Sorry for them being idiots.
Zara, thank you for sharing with us what your life is like with FND. It is such heavy burden to contend with. My heart goes out to you ❤.
Love what you are doing and you are so much hope to people, keep it up
You're amazing and such an inspiration 🙂
Keep rockin, you got this ✌️😊
I hope to one day know the name of whatever it is that's wrong with me. You are so strong and it's giving me courage to keep going.
Your a really good role model i wish that there was more people like you that spread awareness about these topics nkt alot of people talk about because theyre either too scared hate people like that or dont know much. I personally dont know much but my friend has tics and i want to learn more about things like that so i can be there for him and others if they need it i really enjoy watching your channel for that reason
Wish u all the best Zara we all love u and we're here for u ❤
I have the same :( it's a constant battle.
But learning how to rest and give myself time has helped a lot.
My boyfriend has fnd and tourettes. Some days he’s perfectly fine and other days he’s in the hospital. I’m so sorry to anyone who has to deal with this disability
I have epilepsy since i was 22, i understand you. I had a lot of depression, because of the illness i caused. I was in a pub and did hit my head against someones back and then all started. But i learnt to appreciate the things i have and not look what i don't have. I am very happy that i am still alive. My seizure is general, so i am total unconsiuous when i have it then i can't understand things very well like 6 months. You hare very kind person i guess, be happy, no one is perfect, we are here to be happy❤
this is such an important video 🫶 just because u can't see it doesn't mean it's not affecting their daily life 🫂🫂🫂
Your videos are so full different emotions…different but all positive and full inspiration. 🤗
I have never heard of this before. I have diagnosed eds, accompanied with episodic paresis, but my doctors can't come to terms what causes it. It actually helps a lot to know there are others who also have those, it makes me feel less alone
I have an invisible illness, and none of my friends know, except for one
I used to have the Absence Seizures and then I has my first actual Seizure on my 21st birthday but I've had paralysis since I was born so I can somewhat relate
Im sorry you have to live with this illness you are such a beautiful and intelligent young lady hang in there try to be positive and brave I'm always with you in my heart I know I only know you from your UA-cam channel but I care very much about you we are friends and that's a very important thing in life to have someone who cares hope you have a wonderful love you ❤️
As someone with Huntingdon's Disease, I really appreciate other people like you with 'invisible' illnesses bringing awareness to the idea that symptoms wax and wane. One day being perfectly fine, but the next being completely unable to function, and everything in between. From the bottom of my heart, thank you so much for everything you do. I'm happy I came across your content. ❤
My bestfriend has fnd and I always try to be there for her when she has her flare ups. Right now she’s doing really well she can walk all day, she doesn’t get seizures and she gets exhausted less but there was a time when she couldn’t walk at all and had to be in the hospital all the time and i couldn’t be more grateful that she’s doing a whole lot better right now, ur page has rly helped me understand what she still goes through every day. I wish all thr best for you 💕💕
Zara, you are an amazing, beautiful, fun to watch person. I subscribed because i have ticks and you where the only one on youtube that shared their symptoms and made me feel like i was not alone. THANK YOU for being an AMAZING PERSON ❤❤❤❤❤❤❤❤❤
I’ve had autoimmune disorders and intermittent anxiety and depression most of my life. I’m blessed with a wonderful family despite what we’ve been through. I’ve experienced good times when I’m strong and appear as though nothing is wrong with me. I’ve had remissions and set backs. So, although our limitations are different I believe I’m able to empathize with you. I feel mercy and compassion for you. I hope the Lord’s best for you. Know He loves you and how precious you are. Blessings to you!
You are beautiful stay strong❤
Hi Zara! I love your content and it has inspired me to be myself. My mum has this... Since I was 6 ( I'm 14 now) and I don't know how to help. I feel useless when it comes to helping. What can I do to make it easier for her? ❤❤❤
I have FND I Watched this video saw your pain in your eyes & I just started crying for you. It is such a very hard disease to live with. I thank you for being so brave & sharing your story & pain. You have made me feel so much less alone with in this disease. God bless you may you have more happiness than sad ❤❤❤
Your so inspiring to me because you show everyone that you can do really hard things and work through the hard stuff even at the worst times even with people looking or saying something mean you were brave and proud to tell people about what your struggles are every day!! ❤
my jouney is never over. ty for being you.
Love coming up to you from South Australia..❤
I'm in the process of getting tested for FND accompanying a rare disease called CRPS and your videos are very inspiring and soothing, thank you for putting them out there!
Love this
Thank you for making me (& many others ❤️) feel so seen & understood in what can be such an isolating experience - it means the world
Omg I know the feeling of all this. Since I don't have mobility aides (although at times I could definitely use them) I remember days where I'd have to crawl out of bed because my legs just wouldn't cooperate. I'm at the point now where I mostly have seizures, speech apraxia, and hand and feet tremors, but I'm on so much medication to keep it at bay that my professors are surprised I'm even functional. Is there a Discord server for people with FND? If not, there should be because this experience has felt lonely as could be.
I am soooo sorry for you ❤ but i love that you show the reality ❤
You’re so pretty and inspiring and don’t feel like u have to hide it! I have a disability too! It’s diabetes and it’s type 1 and sometimes my mobility due to it is not great luckily I have a health app keeping track of my mental health and physical health but I’m glad you keep going ! ❤
You are a Beautiful Young Lady with much Power!!!
Man that clip is killing me im a 56 year old man im not supposed to cry lol
don’t feel guilty for crying, no matter how much of a joke this comment was. you’re strong when you’re sobbing, too!
I have Narcolepsy with cataplexy and I totally get this. I have had lawyers who specialize in getting disability benefits for their clients tell me that I'm "too young and pretty to be disabled." I look like "I have so much going for me," which apparently means I cant be disabled.
Its really hard to show these moments to people who dont get it.
I'm in a massive flare up rn and it's really bad because I can't even do pe at school because there's so much running 😭
Don't worry we're here with you forever
It is so nice to see another person with FNS! It sucks and people don't understand.. I love your channel and you are doing great! Proud of you! ❤
Ehhhhh I do lol the just the not learning often.
I see you and I admire you 💜 May the people in your life always have your back 🫶🏻
You are strong girl. Don't worry everything gonna be ok, just have faith in yourself and god❤❤
I hope over time you get so much better!!! The fact you show everyone illnesses that are so put aside and raising awareness for education properties, just goes to show how brave you are❤❤ You go Zara!!❤
😭😭😭 I feel these struggles with you sweetheart x
I have M.E.. it's difficult for others to understand how it truly is living with chronic illnesses/conditions.
For the past 10 days I've spent 5 sleeping nearly 20h/day, then be in so much pain that I can't sleep, or even function. Took me two weeks to get my hair washed. Yet, through all of this, I still have a child and a home to take care of. Dropping off and picking up from school, doing lanudry, cooking, shopping and going to the 100's of meetings I have to attend each year.
Not only am I medically disabled, my son is AuDHD and needs lots of different therapies to deal with any issues he might have.
I have no friends or family to speak of.
My ex is only paying the bills, that's how far he'll go.
My government still thinks I'm lazy because I don't work.
NEVER BACK DOWN, NEVER WHAT??!!!!
NEVER GIVE UP
thank you for existing remember to live for the moments of joy and happiness💕
Just be, your very positive, just flow like water, best wishes Don 🍀💦🙏❤️🌹
So proud of you I know the feeling well. Half paralyzed on my left. Fatigue is rough. I love what you’re doing with your platform. Makes me feel less alone. You’ve got support and I love you!
You are so authentic that this so called authentic UA-camr get jealous if they see you. Love your authentic content ♥️
Keep strong! Much love from Utah!
We love you so so so so much, and we Care for You and we love you ❤️☺️🥰
I know what is like to feel alone,on your own and unwanted but no one is alone you got this Zara
You made it through and we r so proud of u!!!! Keep inspiring us all you deserve the world
Oof, this hit hard today. The only "visible" conditions I have are dandruff and eczema. Most of my conditions are diagnosed based on symptoms and a lack of evidence of anything via testing. There's nothing to point at and say "*This* result means you have *that*". I was decently stable for a few years. Not great, but I could work and do the things I needed to do in order to live my life. But now I'm not and all people still see is a "perfectly healthy person". I'm not perfectly healthy, I never have been. I can barely get the things I *need* to do done, often not getting them done at all some days. It's hard.
I'm not "sick again" when I have a bad day or week. I'm not "finally better" when I have a good day or week. Just because I left home doesn't mean I'm "all better", it means I have the energy to go out and do something. The fact I'm not screaming in pain 24/7 doesn't mean I don't live with daily pain that is worse than post surgical pain.
You're going through a lot but you are so super strong for making it through each day. Sharing and spreading awareness is a very important thing and I appreciate that you give us insight on your ups, downs, and in-betweens. :)))) ❤
Keep going, you are strong
You are amazing, so much really ❤❤❤❤❤
i can see what u go through and tell that its not fun. i have a case of depression and everyday wish i wasnt here but i am. one thing i can say is that ur are not alone. wish i knew u in person so i could always give u a person to talk to who will listen and walk with u in these times. u have been improving greatly so never give up never back down. keep up with the good work and keep ur head held high. remember u are a strong women and can conquer the challenges ahead. im going to try my best to achieve something that makes me happy one and wont hurt me. so please keep making ur videos and improving ur health. ur an angel in my eyes and thank u for showing people to keep trucking forward even through the rough times. wish the best for u my lady
Your such a lovely person.
Keep going x your bravery is inspirational,,your heart shines through all this
Your never alone Zara.
Big hug ❤❤❤❤❤
Thank you for being such a strong honest and beautiful human being I suffer from chronic illness as well and a lot of it is invisible you inspire me and uplift me and give me hope that I can have quality of life on some days again cuz I am a dancer who has not been able to dance for almost a year now and it's really breaking my heart even just doing basic errands or tasks can put me into extreme pain seizures and fatigue it can be so frustrating I totally understand how some days people are like you are totally fine you must be faking it it's like until they see you down to like 97 lb deteriorating collapsing crying and seizing they don't believe you it took a lot before my family even acknowledge what I was experiencing I pray that you get the supports that you need to make your life enjoyable and a little more comfortable for you we all have value whether we're laying in our beds are out in the world doing something I was literally praying the other night and I was asking God what my purpose was at this point I found the point where I'm so restricted and my friend called me that night and said that I had changed her friend's life because of the dietary suggestions I made and she told me how I mattered in this world even though I was at home not able to do too much at times and it was like God answered that I matter even if I'm laying in my bed I can still help somebody through a text or make a difference or pray for them or uplift them❤ I love your posts and God bless you you're beautiful woman
You can do this
I have leg pain and it’s gotten worse over the past few years 😢
You're so brave ❤ I love how you inspire us to live our life 🫶
Soft and social distance hugs Hun. I've been disabled since about 2009 and the hardest thing is others not understanding.
No matter what u are strong and am dealing with it and coping and im glad even on bad days u get the support u need and the chance to still be u and do what u love and educate no matter what we love u lots u brighten my day and im so happy to see u do better overtime even tho thats not always the case u still are amazing wonderful and talented❤
I’m so proud of you zara
Whoever loves you will love your body too because you're in there. It ain't perfect but it's yours. ❤️
Your really inspiring especially to someone like me that also has a neurological condition. Thank You for bring a voice of education and inspiration ❤️✨
you’re doing great ❤
woooww im so sorry💔💔💔🤦🏾♀️i really wish i could heal everyone , This is one of the most heart breaking things ive ever seen.
I’ve had a seizure before and it’s quite bad but I’m ok now I have also fainted.