I’ve been following you before I got diagnosed with epilepsy. I knew so much about these disabilities, and I never thought I would deal with anything like it. I got diagnosed with Epilepsy about 5 months ago, (absence seizures), and it’s changed my life. Keep doing what you’re doing! You make me feel like I’m not alone
@@alyssakli2012 yes, in some cases (not all) flashing lights is a trigger to epileptics, but for most it isn’t! There are SO many different triggers for us, some being- hyper ventilation, flashing lights, sleep, for I know so far (I’ve learned a lot abt it since being diagnosed and having my EEG and everything. My trigger is hyperventilation, and I started having the seizures because i am a year round competitive swimmer (6 days a week practice, 3 hrs long, 5 am practices) so whenever I got tired i would hyperventilate and then have a seizure. I don’t have a flashing lights trigger but some people do!
I began gymnastics at 2, competition at at 8, and am still competing at a top level as an adult. I am also autistic, clinically diagnosed at 13. My ASD has been the greatest challenge as a gymnast, emotional regulation issues, rigidity, socialization troubles, and sensory sensitivity, do not pair well with the slow to progress culture of the sport. I have been kicked from a team, discriminated against, and bullied. But I am still here, doing what so many said i would never do. Flipping on vault, doing releases on bars, saltos on beam, and double backs on floor. ASD, once was my greatest obstacle is now my greatest asset. I possess exceptional knowledge of the rule book, am keenly aware of my air space, and have superior technical analysis skills. I still compete, I coach, and am starting my studies to judge. Because I love to prove people wrong almost as much as I love gymnastics. You are doing fantastic, keep it up! ❤ Also, keep your chest tall on your front tucks. That will make you go higher and land more upright. 🤸🏼♀️
It's good that the staff at your gymnastics place are so flexible, a lot would just bin you off. Keep doing what you love for the good times when your health is good❤️
yeah. I got kicked out of my gymnastics classes because I got absolutely exhausted at the end of class. and I'm not even disabled. I'm so glad there are nice coaches out there :]
It's really nice to see you getting out and enjoying "adapted gymnastics". You know staying active is one of the best things you can do for your overall health and mental wellness. Stay positive, Beautiful!!
I am really enjoying your videos. .... I am on my own neurodivergent journey, and I am currently in a huge flare up of neurological symptoms. Seizures, loss of strength in my limbs, migraine, overall body pain, fogy brain, dizziness, and body drop episodes. I have been researching FND and I am 99% sure that is what I have given my history and the recent experiences. Thank you for sharing your stories, especially ones like this where you prove that disabled people are still worthy and can still do things, it just might not look like our able-bodied peers. It gives me hope. Thank you!!
I have epilepsy, paralysis, tics, and tons more things going on and I’ve followed you forever. I used to do competitive gymnastics and miss it so much. You’ve inspired me to get back into gymnastics; even if I can’t do it sometimes (like you said) I’m grateful that I get the opportunity to do it
I was diagnosed with FND and hypermobility last year but I've had symptoms for over a decade. It's been so hard and your content makes me hopeful. You actually inspired me to get my first mobility aid (cool crutches in midnight sky *so pretty!*) and I'm so grateful because it's been difficult for me to accept that I would benefit from a mobility aid.
Love pretty mobility aids! We have hypermobility as well along with a bunch of other stuff, our physiatrist (PM&R doc) said we probably have hEDS but our diagnosis is hypermobility. Our cane has these pretty purple stripes and our wheelchair has like a marbled red design that I just think of gorgeous. One of our friends has a cane (I think? or was it crutches?) with floral design and another friend has a wheelchair with pink spokes! *we use "we" cause we're plural, it's not a royal we or anything
As a competitive cheerleader let me just say you are not useless at the gym!! I go to the gym at multiple times a week but I once a week I go just to be there, it’s nice to not be expected to practice hard every time. So yes just because there are girls who are doing back tucks and fulls they aren’t always working that hard, we all have off or lazy days ❤
I also have autism and FND! I was diagnosed with FND 5 years ago and I basically stopped all exercise because I could no longer do it safely. I’m currently working with physio and OT to learn how to adapt and I’m so close to being able to safely exercise again!
We don't have FND but we're disabled too and we've had to start reassessing movement and exercise. For so long we just thought exercise was the stuff you do in P.E. class, stuff that required walking and running and that was often exhausting and embarrassing. So when we would move in our own way, by pacing our room, rolling around a hilly campus in our wheelchair, dancing to music in our chair, we didn't count it as exercise for a long time. We're rethinking that now. *we use "we" cause we're plural, it's not a royal we or anything
A lot of people have the misconception that disabilities mean fulltime in a wheelchair. I have a pain disorder which flares but I try walk as much as I can. Which also helps my mental health.
Hey Zara, Good that you keep showing these things! Also learning about your mind and body is very important. Often the more you learn, the better things are getting😄😄💞💓 Stay save and keep being you💝
Thank you for this. It’s always been a dream of mine to learn to ice skate but since i got me/cfs it’s seemed impossible. Your content means the world to me thank you for existing
I learned to ice skate during the pandemic. Now it’s something I can do on good days. There’s supports “skate aids” you can use on the ice (like sliding walkers) and if you’re a wheelchair user wheelchairs are allowed on most public skating rinks. So you can stand up skating for a bit, then sit down and have someone (or your power assist) push you.
@@GingerKiwiDev ty for letting me know! I will definitely look into it. I compromised which has always felt like a big deal with my health (as in why should I have to kinda thing) and saved up some money to get detachable rollerskates. I can’t do it as often as I like, but taking them on and off so easily for taking breaks has actually made me enjoy stuff like this. Wishing you lots of good days :)
I’m so impressed by your bravery and strength! I have already told you (if u don’t remember it’s okay lol) that I do ballet and it is probably one of the best things I do tbh. I struggle to go when I’m just having issues with my anxiety so I’m just like how does she do it with the potential risk at becoming paralysed in the middle of class?? I’m so impressed and you should defo be proud of yourself ❤ I love you and I just subbed 😊😊
I would love to see all these video ideas you have. I struggle with the idea of exercise because of my POTS and exercise intolerance, and the difficulty of figuring out how to adapt things to what I can tolerate as my health fluctuates and I go in and out of flare ups.
This was an interesting video. Pacing my movement since my injury has been a massive challenge but it’s getting easier over time. The ‘best day’ vrs ‘worse day’ comparison can be quite stark. Not quite to the level you experience. One good days I can ride a bike (which fills me with joy!) Best of luck with the current flare up. I hope your back to gymnastics soon.
Hi Zara! I love your content and I find it very educational and relatable since I too have tourette syndrome and autism! I was wondering if you would be able to upload a video about revision tips and tricks to cope with exam stress since I have been sitting exams recently and find the whole process extremely overwhelming at times! Also I really struggle to focus since my tics can be very distracting (as I'm sure you can relate!) I hope you are well and thankyou for everything you post, you truly are a star and I really admire your courage and strength 💪 ❤
I do gymnastics and have Tourette’s, autism, adhd, anxiety, and I pass out sometimes. and my gymnastics knows so if I’m not there I can’t go at all that day, I don’t know if I have pots or epilepsy so I have to live with no diagnosis until my mum or dad can get me a diagnosis And for bars you might want chalk
Thank you for posting this! I have always struggled to keep up with any kind of structured exercise routine, and was always ashamed. Whenever I try to explain my struggle, people would insist I just needed to be consistent long enough... Recently been diagnosed with hypermobility and fibromyalgia (I'm also ADHD, ASD, and have orthostatic intolerance too). Hoping to finally feel my struggles are valid, and re-engage in ballet and yoga with physio support. Your video is so encouraging! I would love to see the ways you adapt exercises in the gym! You are inspiring 🤗
You are so inspiring! The first vid I stumbled upon was the COVID test one, now i am amazed at how well you communicate, make content and I am ever grateful. This world needs more people like you. Thank you !!! P.S. My cats saying hi to yours 🙂🙂
I'm currently in diagnosis hell, but my doctor and I are thinking I have POTS. I've always wanted to go into circus arts, namely pole and aerial silks, so it's always reassuring to see other disabled folks doing physically intensive activities and being able to do it within their limits
Hi Zara, I have followed you for a while and you have helped me with my tics and my autism journey. I have wanted to say this for a while but you are absolutely amazing and by far my favorite UA-camr I also love your music keep doing your thing you’re so amazing sending positive vibes-Ollie or tendstoticalot
Hey! Thanks for sharing your gym experience ✨ I really appreciated your honesty when you explained your recovery time following physical exertion. I’m diagnosed with ME/CFS but when I’ve got some energy I love walking, especially along the beach & I’ve decided to try some swimming pool hydrotherapy, to potentially help to stretch & strengthen my joints & muscles. I’ve already bought some Donald Duck swimming trunks 💦 *let’s do this thing!* 🌊🤣
hi Zara nice vid I really liked the bit at 11:00 super hapy you are having a nice time it was really nice to go watch you vid today after I had had a mental brake down earlier doing a bit beater now but yeah great vid hoping you see this comment because I was a bit late because of that. Also I have a question for you have you ever had some one come and say to you I get how hard it is but like the thing they are talking about something you cant help but like if you did you wouldn't be saying it. its even worse wen coming from like your parents. also I found out I can do a full split waist playing football in goal witch was funny but yeah hope you are having a amazing day❤
This is great to see! ❤ Adaptive recreational sports need to be more of a widely offered thing. Gymnastics isn’t for me (somehow simultaneously hypermobile AND stiff as a board) but I’d love to find something else I’d enjoy!
I feel like recreational gymnastics might be one of the best exercises for someone with FND, because hopefully you can lay down on the mats if you feel a seizure coming on.
Yo tengo FND, me gustan mucho tus videos, también me gustaría regresar a hacer ejercicio, yo corría y me gusta mucho, ya no lo hago por qué actualmente tengo una crisis de FNd, pero espero pronto regresar
I am a retired figure skater and now a mobility aid user. I've been wanting to get back into doing it, but almost feel confined by my disability; as if being able to skate one day means I'm "faking" it the others. I appreciate this video so so much. 🫶
this is a tricky mental barrier i think a lot of us struggle with! ❤ but you are ALLOWED to do fun things, and you deserve to enjoy them!! you can use a mobility aid one day and still push yourself when you ARE well enough - nobody makes the rules 🙃
It’s so encouraging! I’m picking up my first custom titanium wheelchair at the end of the month. I haven’t been to ballet or other dance classes since 2019. I’m emailing with the National Ballet’s adult program about doing the barré portion of one class a week. Another comment that’s very kindly meant. (Please ignore if you’re low on spoons!) Have you researched if you might also have Ehlers Danlos Syndrome or Hypermobile Spectrum Disorder as well? Those of us with EDS - frequently have OI or POTS, - are drawn to dance, gymnastics, figure skating, or cheerleading, - are more likely to be neurodivergent and / or queer - have fragile smooth skin - 90% are genetically female - and we have really long arm’s compared to our height I noticed how graceful you are with your arms in this video and how long they are (a good thing!!). Love your content and really appreciate all the work you put into it! ❤ I hate unsolicited medical advice (especially random strangers trying to heal my genetic condition with spices), but at the same time EDS is rarely diagnosed and I wish someone would have said something decades ago.
Just curious do you have hyper mobility because I have saw people with autism often have hyper mobility issues also. Admittidly Im working off quite a small sample so it may just be coincidence. My boy is hyper mobile and shows symtoms like always walking on his toes
i’m not sure officially! but i’ve always struggled with my joints and have had super flexible hips and been able to do splits since being a young kid, so i suspect so!
@@Zara_BethI just did a comment on this. You have such graceful long arms in this video. 😊 That’s a diagnostic criteria for EDS (extra long compared to height).
i tore my pec major (and shoulder) on the rings 😂 but i do suspect i have some form of hyper mobility/instability in my joints nevertheless! it’s definitely comorbid with my other conditions so i wouldn’t be surprised 😅
What's the difference between orthostatic intolerance and POTS? I have struggle with pots symptoms for a few years but my heartrate was borderline when tested on a no symptom day so they couldn't diagnose me and said all my symptoms were normal!!! :( I'm getting the 24 hour monitor that you had and just wonder the difference of having a diagnosis of pots or the intolerance
honestly, they said there is no difference in symptoms..? i'm still confused about it 😅 i was told up until then that i likely had POTS and that they just needed to confirm it (all my symptoms match) but then my tilt table test was "within normal means" so they said i -don't- have POTS due to that?! it's a minefield haha, but the treatments + symptoms are identical 🙃🩷
@@Zara_Beth yeah they seemed the same, I haven't had the tilt table but they've taken my heartrate and I'm going to have a 24 hour monitor so I hope I catch symptoms 🤞🤞 it's definitely not normal all of my symptoms like they said :(
I have OI. With OI the diagnostic criteria is that your blood pressure drops when standing. While my heart rate has spiked when I’m very symptomatic it doesn’t always/ not that often. For POTS the diagnostic criteria is that your heart rate spikes when standing. (Tachycardia) - your blood pressure can drop but heart rate is the main issue/ trigger for the blood pressure dropping. ___ I also have another form of dysautonomia (that was misdiagnosed as epilepsy from when I was 2 until I was 14) “Hyper vasal vagal syndrome” BOTH my blood pressure and heart rate drops in certain situations. For me that’s invasive medical procedures, blood draws, IVs, and deep cuts. The last time I had a blood test (2010) I stopped breathing. Likely the only reason I haven’t passed out from my OI is that I was taught from when I was two years old that if I felt a “seizure” coming on I had to sit on the ground and make sure there’s nothing I could hit my head on. That feeling of what was misdiagnosed as seizures is actually presyncope /syncope from dysautonomia. Sitting or laying down fixes OI. I have no issues with randomly sitting on floors in public because that was my normal from when I was 2. Hope that helps. ❤ It’s so easy to get overwhelmed!
@@GingerKiwiDev wow yeah that really helps. I got a 24 hour heart.monitor to see if I could catch pots symptoms bt I'm 99.999% sure I have pots becuase I have all the symptoms!!!! So frustrating becuase I'm sure the doctors don't agree. I also get presyncope
I swear I saw a twin of you!!I was at the mall and I saw a girl at auntie Ann’s and I saw a girl who looked like you???was that you??I don’t think you know me but I had brown hair and a gray shirt and a black purse and I bought a whole pretzel???I just wanna know???
A workout video with your accommodations would be so helpful for me to use as a guide for my own workouts. Idk how to do leg day with partially paralyzed legs 😂 I’m kidding obviously I would rest my legs that day but yeah! I need some workout help 😂 can u also show accommodations that the gym itself might have? 🩵🩵🩵 I’m loving this content and I actually feel capable again
I’ve been following you before I got diagnosed with epilepsy. I knew so much about these disabilities, and I never thought I would deal with anything like it. I got diagnosed with Epilepsy about 5 months ago, (absence seizures), and it’s changed my life. Keep doing what you’re doing! You make me feel like I’m not alone
my friend has epilepsy just like you but she was born with it and what I learned is to not watch things that have blinking lights or glitching stuff
@@alyssakli2012 yes, in some cases (not all) flashing lights is a trigger to epileptics, but for most it isn’t! There are SO many different triggers for us, some being- hyper ventilation, flashing lights, sleep, for I know so far (I’ve learned a lot abt it since being diagnosed and having my EEG and everything. My trigger is hyperventilation, and I started having the seizures because i am a year round competitive swimmer (6 days a week practice, 3 hrs long, 5 am practices) so whenever I got tired i would hyperventilate and then have a seizure. I don’t have a flashing lights trigger but some people do!
I love your tenacious ability to not let anything stand I'm your way even with your disabilities you can still do the things you love
I began gymnastics at 2, competition at at 8, and am still competing at a top level as an adult. I am also autistic, clinically diagnosed at 13.
My ASD has been the greatest challenge as a gymnast, emotional regulation issues, rigidity, socialization troubles, and sensory sensitivity, do not pair well with the slow to progress culture of the sport. I have been kicked from a team, discriminated against, and bullied.
But I am still here, doing what so many said i would never do. Flipping on vault, doing releases on bars, saltos on beam, and double backs on floor. ASD, once was my greatest obstacle is now my greatest asset. I possess exceptional knowledge of the rule book, am keenly aware of my air space, and have superior technical analysis skills. I still compete, I coach, and am starting my studies to judge. Because I love to prove people wrong almost as much as I love gymnastics.
You are doing fantastic, keep it up! ❤ Also, keep your chest tall on your front tucks. That will make you go higher and land more upright. 🤸🏼♀️
It's good that the staff at your gymnastics place are so flexible, a lot would just bin you off. Keep doing what you love for the good times when your health is good❤️
they’re really lovely ❤
yeah. I got kicked out of my gymnastics classes because I got absolutely exhausted at the end of class. and I'm not even disabled. I'm so glad there are nice coaches out there :]
It's really nice to see you getting out and enjoying "adapted gymnastics". You know staying active is one of the best things you can do for your overall health and mental wellness. Stay positive, Beautiful!!
I am really enjoying your videos. .... I am on my own neurodivergent journey, and I am currently in a huge flare up of neurological symptoms. Seizures, loss of strength in my limbs, migraine, overall body pain, fogy brain, dizziness, and body drop episodes. I have been researching FND and I am 99% sure that is what I have given my history and the recent experiences. Thank you for sharing your stories, especially ones like this where you prove that disabled people are still worthy and can still do things, it just might not look like our able-bodied peers. It gives me hope. Thank you!!
I have epilepsy, paralysis, tics, and tons more things going on and I’ve followed you forever. I used to do competitive gymnastics and miss it so much. You’ve inspired me to get back into gymnastics; even if I can’t do it sometimes (like you said) I’m grateful that I get the opportunity to do it
I was diagnosed with FND and hypermobility last year but I've had symptoms for over a decade. It's been so hard and your content makes me hopeful. You actually inspired me to get my first mobility aid (cool crutches in midnight sky *so pretty!*) and I'm so grateful because it's been difficult for me to accept that I would benefit from a mobility aid.
i gave the midnight sky crutches!! they’re so helpful ❤
Love pretty mobility aids! We have hypermobility as well along with a bunch of other stuff, our physiatrist (PM&R doc) said we probably have hEDS but our diagnosis is hypermobility. Our cane has these pretty purple stripes and our wheelchair has like a marbled red design that I just think of gorgeous. One of our friends has a cane (I think? or was it crutches?) with floral design and another friend has a wheelchair with pink spokes!
*we use "we" cause we're plural, it's not a royal we or anything
As a competitive cheerleader let me just say you are not useless at the gym!! I go to the gym at multiple times a week but I once a week I go just to be there, it’s nice to not be expected to practice hard every time. So yes just because there are girls who are doing back tucks and fulls they aren’t always working that hard, we all have off or lazy days ❤
I also have autism and FND! I was diagnosed with FND 5 years ago and I basically stopped all exercise because I could no longer do it safely. I’m currently working with physio and OT to learn how to adapt and I’m so close to being able to safely exercise again!
We don't have FND but we're disabled too and we've had to start reassessing movement and exercise. For so long we just thought exercise was the stuff you do in P.E. class, stuff that required walking and running and that was often exhausting and embarrassing. So when we would move in our own way, by pacing our room, rolling around a hilly campus in our wheelchair, dancing to music in our chair, we didn't count it as exercise for a long time. We're rethinking that now.
*we use "we" cause we're plural, it's not a royal we or anything
Loving the weekly videos, zara!
A lot of people have the misconception that disabilities mean fulltime in a wheelchair.
I have a pain disorder which flares but I try walk as much as I can. Which also helps my mental health.
Hello Zara 👋 I am so glad to see you again. This is the perfrct time to relax and watch your amazing video
Hey Zara,
Good that you keep showing these things! Also learning about your mind and body is very important. Often the more you learn, the better things are getting😄😄💞💓 Stay save and keep being you💝
ive loved watching your journey with your Tourettes and your autism diagnosise you are so strong keep it going girl
I’m so happy that you try a lot of different things. You’re just so amazing ❤❤❤❤.
Thank you for this. It’s always been a dream of mine to learn to ice skate but since i got me/cfs it’s seemed impossible. Your content means the world to me thank you for existing
I learned to ice skate during the pandemic.
Now it’s something I can do on good days.
There’s supports “skate aids” you can use on the ice (like sliding walkers) and if you’re a wheelchair user wheelchairs are allowed on most public skating rinks.
So you can stand up skating for a bit, then sit down and have someone (or your power assist) push you.
@@GingerKiwiDev ty for letting me know! I will definitely look into it. I compromised which has always felt like a big deal with my health (as in why should I have to kinda thing) and saved up some money to get detachable rollerskates. I can’t do it as often as I like, but taking them on and off so easily for taking breaks has actually made me enjoy stuff like this. Wishing you lots of good days :)
another interesting video! thanks for teaching us a bit about your perspective zara :)
I love that you put chapters on your videos!
Glad you like them!! I hoped it would help :)
I’m so impressed by your bravery and strength! I have already told you (if u don’t remember it’s okay lol) that I do ballet and it is probably one of the best things I do tbh. I struggle to go when I’m just having issues with my anxiety so I’m just like how does she do it with the potential risk at becoming paralysed in the middle of class?? I’m so impressed and you should defo be proud of yourself ❤ I love you and I just subbed 😊😊
I would love to see all these video ideas you have. I struggle with the idea of exercise because of my POTS and exercise intolerance, and the difficulty of figuring out how to adapt things to what I can tolerate as my health fluctuates and I go in and out of flare ups.
I LOVE THIS i hope to get back into gymnastics to but with my health i didn't think it was possible !!! THANK YOU
I'm so proud of you.
This was an interesting video. Pacing my movement since my injury has been a massive challenge but it’s getting easier over time. The ‘best day’ vrs ‘worse day’ comparison can be quite stark. Not quite to the level you experience. One good days I can ride a bike (which fills me with joy!)
Best of luck with the current flare up. I hope your back to gymnastics soon.
Hi Zara! I love your content and I find it very educational and relatable since I too have tourette syndrome and autism! I was wondering if you would be able to upload a video about revision tips and tricks to cope with exam stress since I have been sitting exams recently and find the whole process extremely overwhelming at times! Also I really struggle to focus since my tics can be very distracting (as I'm sure you can relate!)
I hope you are well and thankyou for everything you post, you truly are a star and I really admire your courage and strength 💪 ❤
i will try and do a video on this super soon!! ❤
@Zara_Beth Thank-you soooooo much! You just made my day by replying 💖💖
I do gymnastics and have Tourette’s, autism, adhd, anxiety, and I pass out sometimes. and my gymnastics knows so if I’m not there I can’t go at all that day, I don’t know if I have pots or epilepsy so I have to live with no diagnosis until my mum or dad can get me a diagnosis
And for bars you might want chalk
Thank you for posting this!
I have always struggled to keep up with any kind of structured exercise routine, and was always ashamed.
Whenever I try to explain my struggle, people would insist I just needed to be consistent long enough...
Recently been diagnosed with hypermobility and fibromyalgia (I'm also ADHD, ASD, and have orthostatic intolerance too).
Hoping to finally feel my struggles are valid, and re-engage in ballet and yoga with physio support.
Your video is so encouraging!
I would love to see the ways you adapt exercises in the gym!
You are inspiring 🤗
2:14 RIP Zara's arm lol. Love this video! I am happy you can still do gymnastics despite having health issues :) you are amazing!
You are so inspiring! The first vid I stumbled upon was the COVID test one, now i am amazed at how well you communicate, make content and I am ever grateful. This world needs more people like you. Thank you !!! P.S. My cats saying hi to yours 🙂🙂
I'm currently in diagnosis hell, but my doctor and I are thinking I have POTS. I've always wanted to go into circus arts, namely pole and aerial silks, so it's always reassuring to see other disabled folks doing physically intensive activities and being able to do it within their limits
Your amazing for real 😊 an inspiration
Hi Zara, I have followed you for a while and you have helped me with my tics and my autism journey. I have wanted to say this for a while but you are absolutely amazing and by far my favorite UA-camr I also love your music keep doing your thing you’re so amazing sending positive vibes-Ollie or tendstoticalot
Keep it up Zara !!
Feel so bad for you I love how,you just on with your day a shrug it of
Thanks for making this video ❤
All of your suggestions at the end would make great videos keep em coming and good luck!
Hey! Thanks for sharing your gym experience ✨ I really appreciated your honesty when you explained your recovery time following physical exertion.
I’m diagnosed with ME/CFS but when I’ve got some energy I love walking, especially along the beach & I’ve decided to try some swimming pool hydrotherapy, to potentially help to stretch & strengthen my joints & muscles.
I’ve already bought some Donald Duck swimming trunks 💦 *let’s do this thing!* 🌊🤣
Hey Happy Sunday
hi Zara nice vid I really liked the bit at 11:00 super hapy you are having a nice time it was really nice to go watch you vid today after I had had a mental brake down earlier doing a bit beater now but yeah great vid hoping you see this comment because I was a bit late because of that. Also I have a question for you have you ever had some one come and say to you I get how hard it is but like the thing they are talking about something you cant help but like if you did you wouldn't be saying it. its even worse wen coming from like your parents. also I found out I can do a full split waist playing football in goal witch was funny but yeah hope you are having a amazing day❤
This is great to see! ❤ Adaptive recreational sports need to be more of a widely offered thing. Gymnastics isn’t for me (somehow simultaneously hypermobile AND stiff as a board) but I’d love to find something else I’d enjoy!
making a video of how you go to the gym would be cool btw I really like your videos and appreciate you commitment
People are often surprised I'm active with the polineuropathy, forgetting the fact it's highly recommended, when you have such illness XD
Keep up the great work x
Yay top 222 and top 40 likes and comments. Love this channel. Best to you and your family. Thanks for making this video.
I would love to see a video about how to handle POTS 😭
Zara you're so good at splits (at least in these videos)!! This is really cool :o
I love your vids 💕
I feel like recreational gymnastics might be one of the best exercises for someone with FND, because hopefully you can lay down on the mats if you feel a seizure coming on.
yes, it’s all padded! 😂
Yo tengo FND, me gustan mucho tus videos, también me gustaría regresar a hacer ejercicio, yo corría y me gusta mucho, ya no lo hago por qué actualmente tengo una crisis de FNd, pero espero pronto regresar
I am a retired figure skater and now a mobility aid user. I've been wanting to get back into doing it, but almost feel confined by my disability; as if being able to skate one day means I'm "faking" it the others. I appreciate this video so so much. 🫶
this is a tricky mental barrier i think a lot of us struggle with! ❤ but you are ALLOWED to do fun things, and you deserve to enjoy them!! you can use a mobility aid one day and still push yourself when you ARE well enough - nobody makes the rules 🙃
I was diagnosed with epilepsy (tonic clonic)seizures two months ago and I didn’t know that I could gymnastics
I CAN SEE HEARTSTOPPER BOOKS IN THE BACKGROUND
heck yea!!!
It’s so encouraging! I’m picking up my first custom titanium wheelchair at the end of the month. I haven’t been to ballet or other dance classes since 2019. I’m emailing with the National Ballet’s adult program about doing the barré portion of one class a week.
Another comment that’s very kindly meant. (Please ignore if you’re low on spoons!)
Have you researched if you might also have Ehlers Danlos Syndrome or Hypermobile Spectrum Disorder as well?
Those of us with EDS
- frequently have OI or POTS,
- are drawn to dance, gymnastics, figure skating, or cheerleading,
- are more likely to be neurodivergent and / or queer
- have fragile smooth skin
- 90% are genetically female
- and we have really long arm’s compared to our height
I noticed how graceful you are with your arms in this video and how long they are (a good thing!!).
Love your content and really appreciate all the work you put into it! ❤
I hate unsolicited medical advice (especially random strangers trying to heal my genetic condition with spices), but at the same time EDS is rarely diagnosed and I wish someone would have said something decades ago.
Where did you find that 90% of people with EDS are women ? I only found this statistic for hEds.
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Just curious do you have hyper mobility because I have saw people with autism often have hyper mobility issues also. Admittidly Im working off quite a small sample so it may just be coincidence. My boy is hyper mobile and shows symtoms like always walking on his toes
i’m not sure officially! but i’ve always struggled with my joints and have had super flexible hips and been able to do splits since being a young kid, so i suspect so!
@@Zara_BethI just did a comment on this. You have such graceful long arms in this video. 😊
That’s a diagnostic criteria for EDS (extra long compared to height).
youdesrvehappiness❤
You have EDS?? Your talking about POTS, FND, shoulder injuries etc which makes it sound like you have EDS???
i tore my pec major (and shoulder) on the rings 😂 but i do suspect i have some form of hyper mobility/instability in my joints nevertheless! it’s definitely comorbid with my other conditions so i wouldn’t be surprised 😅
Wrangling all those conditions feels like you're earning a PhD in medical field ! It's feel like unlocking a secret level of fulfillment tho.
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I love you
What's the difference between orthostatic intolerance and POTS? I have struggle with pots symptoms for a few years but my heartrate was borderline when tested on a no symptom day so they couldn't diagnose me and said all my symptoms were normal!!! :( I'm getting the 24 hour monitor that you had and just wonder the difference of having a diagnosis of pots or the intolerance
honestly, they said there is no difference in symptoms..? i'm still confused about it 😅 i was told up until then that i likely had POTS and that they just needed to confirm it (all my symptoms match) but then my tilt table test was "within normal means" so they said i -don't- have POTS due to that?!
it's a minefield haha, but the treatments + symptoms are identical 🙃🩷
@@Zara_Beth yeah they seemed the same, I haven't had the tilt table but they've taken my heartrate and I'm going to have a 24 hour monitor so I hope I catch symptoms 🤞🤞 it's definitely not normal all of my symptoms like they said :(
I have OI.
With OI the diagnostic criteria is that your blood pressure drops when standing.
While my heart rate has spiked when I’m very symptomatic it doesn’t always/ not that often.
For POTS the diagnostic criteria is that your heart rate spikes when standing. (Tachycardia)
- your blood pressure can drop but heart rate is the main issue/ trigger for the blood pressure dropping.
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I also have another form of dysautonomia (that was misdiagnosed as epilepsy from when I was 2 until I was 14)
“Hyper vasal vagal syndrome”
BOTH my blood pressure and heart rate drops in certain situations.
For me that’s invasive medical procedures, blood draws, IVs, and deep cuts.
The last time I had a blood test (2010) I stopped breathing.
Likely the only reason I haven’t passed out from my OI is that I was taught from when I was two years old that if I felt a “seizure” coming on I had to sit on the ground and make sure there’s nothing I could hit my head on.
That feeling of what was misdiagnosed as seizures is actually presyncope /syncope from dysautonomia.
Sitting or laying down fixes OI. I have no issues with randomly sitting on floors in public because that was my normal from when I was 2.
Hope that helps. ❤
It’s so easy to get overwhelmed!
@@GingerKiwiDev wow yeah that really helps. I got a 24 hour heart.monitor to see if I could catch pots symptoms bt I'm 99.999% sure I have pots becuase I have all the symptoms!!!! So frustrating becuase I'm sure the doctors don't agree. I also get presyncope
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What happens when you’re at school and say a bad word out loud on accident
I swear I saw a twin of you!!I was at the mall and I saw a girl at auntie Ann’s and I saw a girl who looked like you???was that you??I don’t think you know me but I had brown hair and a gray shirt and a black purse and I bought a whole pretzel???I just wanna know???
I saw a girl who worked there that looked like you??
@@Iris.Turner17i don’t have a job (aside from content lol) 😂 apparently i have a mystery twin?!
You go to the same gym as me…
no way!
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You room is so cute ❤❤❤❤
Do u agree
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thank you!!
Love your flag
One minute :O
Hi
Second ! )
Ok r you
раздражение и злость на себя - двигатель прогресса 🙄 а вот зависть к другим - тормоз.
Ur pritty
Girlfriend boy
A workout video with your accommodations would be so helpful for me to use as a guide for my own workouts. Idk how to do leg day with partially paralyzed legs 😂 I’m kidding obviously I would rest my legs that day but yeah! I need some workout help 😂 can u also show accommodations that the gym itself might have? 🩵🩵🩵 I’m loving this content and I actually feel capable again
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