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29,531 Views • Nov 12, 2024 • Click to toggle off description
the feeling of constantly trying to improve and get back to the person you were before
the feeling of disappointment and frustration because you can’t do the things you used to do & your attempts to keep up only push you further into a flareup
✨ but know that if you can relate to this then you are not alone. so many disabled people experience this grief, and it isn’t something we should feel embarrassed about
It is okay to be struggling and not be the same person you were before health issues ❤️ it’s okay to change and regress and grow and shape yourself as you learn who you are, and it’s okay if that person looks different to the one you used to imagine
I struggle with change a lot, especially because I’m autistic, therefore recent years have definitely been a massive challenge & adjustment - but I can confidently say that I’m slowly finding my feet and finding ways to enjoy life… even when I have no idea what my life or health will look like in the future 🫂
don't forget to subscribe :) ♡
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⭐️ instagram ▹ www.instagram.com/zara.bethx/
⭐️ join my discord server ▹ discord.gg/zarabeth
⭐️ become a channel member ▹ youtube.com/channel/UCLvAmmzhy_4kl2oMje9Rk5w/join
⭐️ stream my music ▹ distrokid.com/hyperfollow/zarabeth/shes-mine
⭐️ all socials ▹ portaly.cc/zarabeth
BUSINESS EMAIL ▹ enquiries@zarabeth.co.uk
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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and dysautonomia along with being autistic and queer! I also advocate for mental health.
2. What is FND? 🧠
‣ fndhope.org/fnd-guide/
3. What is Tourette's?
‣ www.nhs.uk/conditions/tourettes-syndrome/
4. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
5. What filming equipment do I use? 📸
‣ main camera* - amzn.to/3MW7v8w
‣ vlogging camera* - amzn.to/42CBQ1G
‣ mic* - amzn.to/3qD5gjg
‣ wireless mics* - amzn.to/3X2RxOE
⭐️ YouTube Setup + Equipment* ▹ amzn.to/42QmxCN
⭐️ Recommended Products* ▹ amzn.to/41wXJPX
(*af links mean i make a small cut from purchases, but this doesn't cost or affect you! 💕)
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✰ About Me ✰
I'm Zara Beth (zeezee25 on tiktok) and I post videos on disability, neurodiversity, life withTourette's Syndrome, Functional Neurological Disorder (FND) and Dysautonomia. Tourette's syndrome is a neurological condition causing involuntary movements called tics. I advocate and raise awareness for chronic illness & share life as a disabled person. I am autistic, sharing sensory struggles along with mental health & accommodations I use to help daily life. I'm an ambulatory wheelchair user using mobility aids and documenting how chronic illness symptoms vary day to day!
I'm an artist & a musician with a song called "She's Mine" available on all streaming platforms. I also love reading, writing, and I'm currently writing a memoir about my jou
Views : 29,531
Genre: People & Blogs
License: Standard YouTube License
Uploaded At Nov 12, 2024 ^^
warning: returnyoutubedislikes may not be accurate, this is just an estiment ehe :3
Rating : 4.952 (57/4,701 LTDR)
98.80% of the users lieked the video!!
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User score: 98.20- Masterpiece Video
RYD date created : 2024-11-19T23:35:40.909226Z
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168 Comments
Top Comments of this video!! :3
You are not alone. It’s been years since I’ve been diagnosed and the grief I feel will never go away
115 |
Grieving loss of health is just as real as grieving losing a loved one.
58 |
I find it hard to acknowledge that I used to be less disabled than I am now. It's easier to feel like it's always been this way than to admit that I used to have more ability and less pain and sickness, and I just don't anymore
43 |
Disabled people NEED to grieve, it’s not just when you lose someone, it’s when you go through anything mayor that stresses you out, it helps the person going through it to file away the pain and hurt and accept the new reality you need to live in now, when I first found out I was ushered back to class and wasn’t given time to grieve, then I forgot and now, when I’ve been aware of my disability for more than half my life (barely) I’m afraid it’s not possible to grieve anymore
I went to a grieve counseler and got yelled at for wasting their time with “pointless and trivial issues” despite the fact that my disability caused my depression, they basically said to just “get over it”
88 |
I really relate to this - I struggle a lot with the feeling of being a less adventurous, less energetic version of myself since becoming chronically ill.
I try to tell myself that my physical limitations don't mean that I'm less strong or courageous now, I just have to express these parts of my personality in different ways.
But like you said, it's just hard sometimes to think about the things that you can't do anymore and the uncertainty of not knowing if you ever will again.
24 |
I totally understand this! I used to be a dancer on pointe for so many years. Now i have FND, and i use a wheelchair nearly everyday. I fully believe i am going to get back to dancing, but for right now, its really hard to grieve that.
17 |
Now, I don't know what it's like to have known hiking and gymnastics and have lost it, because my physical disability has been with me since birth, so I mostly feel frustration of inability rather than grief/loss. But just want those of you here in the comments who feel frustrated or angry to know - that's ok too.
29 |
Thank you for your posts on the real- life sides of disability.
9 |
Dont really know what to comment without the usual cliches. But really want you to know that i feel for you and that your frank and honest posts make people feel less alone. I hope that ls the same for you
14 |
Disability grief is a real thing. I also have FND from a stroke I went through and though my symptoms so far are mild. It’s still so hard. So i understand. There is no sugar coating it
10 |
I've experienced this with my autism and psychiatric disabilities. I went from social, active, high-scoring student who tried new things to insular teenager. One day, I started having trauma-induced FND with abnormal movement, and I would collapse and start shaking, have absence seizures, or suddenly pass out, some days every 10-15 minutes. One day, I could no longer fight off my autism, the next, my post-traumatic stress caught up with me, and with that, my anxiety disorders became severe with frequent panic attacks, I developed severe depression, and with that came lots of lovely problems. I was so sad when it first started, because I couldn't understand why my mind and body wouldn't listen to me. I kept thinking I would be better tomorrow, and when I stopped, I felt cheated of my childhood.
And as I have started to recover, and I see all the ways I will never recover, it makes me so sad. I can't cry, so I just sit motionless (so odd, I am usually ticing), and wonder what it was like when I could concentrate, before my memory became such that I have few memories, and those are a few impersonal words, like somebody told me them.
And even worse, I mourn the lessening of my disabilities. I obsessively watch my back, but I don't panic. My legs stop working sometimes, but I usually can sit down before they completely fail, and I rarely pass out. My hands open, and something flies away, but it's never something important. It grieves me to see how it's left me in a sort of limbo, never fully recovering, but not disabled enough by most of those conditions. It's like I have a disability made of the remnants of disabilities.
If you have read to the end, thank you for listening to me.
5 |
It's nice to know I'm not alone. I just started having muscle contractions in just my legs. Had to call off work because I couldn't walk last shift. That's brand new and I'm definitely not happy about it.
7 |
You have helped me so much in my journey. Thank you for posting as much as you do. You inspire me to keep being independent as much as possible, while also not feeling bad that I DO need help and I AM suffering.
Stay safe❤❤❤❤
3 |
sending you lots of gentle hugs because I feel this so much and truly does hurt. I've been dealing with my chronic illnesses being disabling for over a decade at this point. every time I think I have fully accepted them and done the work, a flareup that makes my baseline get worse comes and I have to do it all again. the grief is so real and also so layered. I'm mourning the me I was, the me I thought I would be. over and over with every flareup. I look at my last pair of pointe shoes, collecting dust for so many years, and I can't help but tear up. I was never going to be a dancer (nor did I want to), it was just a hobby, something I did a couple times a week, but I did love it fiercely. now I can't even take a short walk with my dog every day. I hope getting a powered wheelchair will help me out in being more independent and being able to leave my house more often, but at the same time I don't think anything can ever fully heal the part of me that mourns my loss of mobility and declining health, regardless of how much I accept my illnesses and disabilities.
2 |
I completely understand
Thank you for everything you do to advocate for these conditions 💜
I’m a young teen with FND, autism and Tourette’s and I look up to you so much
6 |
Yes! It's so important to raise awareness. I had a stroke last year and lost some of mobility, endurance and many other things, and probably half of recovery is learning how to live with this and accept it. My mental state affected also my physical abilities
3 |
I love the way you explain things.… I’ve heard of this before but never understood how hard it must be for you. Love to you Zara. You are so strong and loved by so many ❤️
5 |
You're not alone in your grief nor will you ever be <3
I've been diagnosed with chronic illnesses for 10 years now and one minute I can do pole dancing (which i use as a tool to mitigate my pain) and the next I'm crawling on the floor blacking out because of the pain I feel.
It changes daily, day by day you have a rush of hope that you feel better and more able and then it feels like it's been ripped away from you.
I've come to realise that hope of it just suddenly going away never leaves you, but that it also doesn't change who you are on the inside. Kindness, love, passion, resilience, perseverance...your illness can never take that from you.
6 |
I've been pushing off dealing with those feelings, but it is hard. It really is. I used to swim competitively and hike every day, but it's hard to not be able to do that the same anymore.
3 |
@VintageRayne
1 week ago
I think another thing that’s not talked enough about is the DAILY grief that hits when you realize there’s a new thing gone. Or when, for example, you drop your favorite mug & it shatters because your hand just randomly stopped working. Or the new waves of grief that comes when your base level drops. Or like you mentioned, the grief & frustration that comes when you do things to help yourself but it just blows up in your face. I used to be a hobbyist runner myself. Now I’m symptomatic just standing up & walking to the bathroom. Much love to you Girlie. Love the hoodie! 🤍🥄🦓
267 |