I'm in a Health Flare-up 😅 | Grieving a Non-Disabled Life
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- Опубликовано: 28 июн 2024
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✨ TIMESTAMPS✨
00:00 - intro
00:21 - dynamic disabilities
01:13 - coping with my conditions
02:06 - current update
03:20 - mental vs physical health
04:47 - my FND symptoms
07:10 - medical trauma
07:51 - why post advocacy?
09:19 - social media isn’t reality
10:00 - struggling to keep up
12:13 - grieving a non-disabled life
13:45 - finding community
14:51 - outro
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✰ FAQs ✰
1.What conditions do I have?
‣ I have Tourette's Syndrome, FND and orthostatic hypotension 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/tourett...
4. What do I use to edit videos? 🖥️
‣ Final Cut Pro X
5. 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
⭐️ RUclips Setup + Equipment* ▹ amzn.to/42QmxCN
⭐️ Recommended Products* ▹ amzn.to/41wXJPX
(*af links mean i make a small cut from any purchases, but this doesn't cost or affect you! 💕)
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✰ About Me ✰
My name is Zara Beth (zeezee25 on tiktok) and I post videos about disability, neurodiversity and 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, RUclips & Instagram) to advocate and raise awareness for my conditions and share what it's like living as a neurodivergent and disabled person. I am autistic, sharing my sensory struggles along with my experiences with mental health disorders.
I share the accommodations I use to help my daily life, and I'm an ambulatory wheelchair user documenting my life using mobility aids and how chronic illness symptoms vary from day to day!
I'm a musician with a song called "She's Mine" available on all streaming platforms, and I'm an artist with a small business and website selling my artwork, disability merch. I also love reading, writing, and I'm currently writing a novel and a book/memoir about my life!
Zara, we understand. You are doing amazing despite all the challenges you're constantly facing. If you need to take a break at any point to rest, nobody (or at least no real fan) will hold that against you. Look after yourself 💗 (also I adore your space themed jumpsuit, space is one of my hyper-focuses)
Can everyone take a moment to appreciate Zara's cat in the background ❤😻
Aw gorgeous isnt it i love ginger cats 🐈🐈🐈🐈🌹🐈🌹🐈🌹🌹🐈🐈🌸🐈🌸🐈🌸🐈🌹🐈🌹🐈🌹🐈🌹🐈🌹🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🌸🐈🐈🌸🌸🐈🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🌸
Thankyou for validating that "normal" things like a shower can be so difficult to manage for someone with a chronic illness❤ So many people take basic things they can just do for granted.
This is so true. It might sound trivial, but when I learned to walk again after suffering a stroke, the first day I was able to sit on the toilet on my own made me realise how much I missed it. Such a thing that is normal and obvious for a healthy person. And I'm grateful for being able to be independent, even though I will be disabled for the rest of my life.
Ikr? Not enough spoons in my hand today! ❤
💜 I understand flares and hope yours passes as well as it can. Don't feel guilty for not being able to do things. Your health related things are not something that you should ever feel guilty about.
I've been in such a bad dysautonomia flare-up and this was a nice reminder to not blame myself for my body's inability to do daily tasks. I hope you can enjoy as much of your day as you can!💚
(Your cat is also the cutest little thing ever.)
I’m also disabled and sometimes I get flare ups too. Hope you feel better ❤
You do not owe anyone an explanation of your life and why you do the things you do, but you give us that insight into your life and it's very brave to do so. I thank you for being so open and honest - it makes those of us with disabilities, mental and physical, feel less alone in our trials and tribulations.
Zara, please take time for yourself and care for yourself during this flare-up. Be kind to yourself. We will be waiting here for you. 🥰
I feel so much less alone when I see someone else who's not able to work and even not able to do hobbies when being is a worse period. I have suffered from mental illness for 20 years and never been able to work, and it feels so freeing to see someone else without that ability still have a good life. The public never hear our stories and see our struggles (showers are the WORST!), because we're too ill to be a voice out in the open.
I hope I one day can publish a book about my life and tell the world that there are people who live with chronic illnesses that will NEVER go away. Show them how a life can look, one of those stories you never hear. I want to be a voice in the void and educate people. Make them stop calling ADHD and autism super-powers and stop romanticising bipolar disorder. It's hell. Especially when you have so many disorders at the same time. Showering and feeding yourself + the cat is sometimes all you can do on a day. And you've fought like an animal for it and deserve the nobel prize for that achievement.
And healthy people just think we're at home lazy.... People who work 8 hours a day still have more energy when they get home than I do, even if I'm home all day. It's invisible, but SO REAL.
@@SamirCCat
I totally get where you're coming from. Living life with a disability is incredibly hard, and if you put on more disabilities that impede your ability to do a lot of other things in your life, it becomes quite miserable.
Also I would honestly absolutely read a book like that. I would read it and share the book with my friends. Please never give up on your dreams and desires, you are worth achieving them.
@@duskwishing Thank you so much! I sometimes want to give up my dream, because I've wanted to publish a book since I was 10 and now I'm 36 and still no book... But I'll keep trying, my dream is very much alive. I just need to utilise the good days, allow myself to rest on the bad days, and sooner or later I might've written a book worth publishing. I just need to be patient, which as a person with ADHD is very difficult! lol
Late diagnosed and middle-aged AuDHD here, I empathize. Dragon is immensely helpful for transcription on days when typing just isn't feasible, and I can't recommend highly enough Brian Eno's "Ambient 1: Music for Airports" as a genuinely effective music therapy.
Me to along with heds do you have fybromyalgia to
This is a perfect time to ask those viewing who have a disability to respond to the Government’s PIP consultation. Zara you have perfectly described why disabilities are hard and affect everyone everyday, much of it not seen. Sending ❤
Wow Zara you have just posted this at just the right time. I also have Tourette’s and it’s been pretty mild for a bit. All of a sudden today out of literally no where today my tics have gotten worse again and have no energy and needed someone to relate to. Thanks for the video Zara and hope your flare up goes away ❤
My tics have done this recently too! Stay strong, you're not alone :)
@@Em_theDino13thanks :) the same to you :)
Thank you for sharing everything about being disabled
You’ve got this Zara I’m also struggling but for slightly different reasons like my adhd and autism is making me overwhelmed and not able to get ready without stress and I finding out if I have POTS or not but also my tourrettes are becoming more so just remember that we are here for you and we are really proud of you for being able to do certain things
Oh Zara Beth, please don't put yourself under pressure. We love you just as you are. We understand. Hope the symptoms settle soon. When you have a disability it is normal to grieve for what you have lost. You don't have to apologise. Love the space suit by the way. The black contrasting with the bright pictures look great.
Something someone once taught me was to think of it like this:
"The Gods knew you would be unstoppable, so they needed to give you a weakness."
Sometimes, instead, I'll think of it as this:
"The world gave me a challenge to overcome. And with the experience I gain from it, I will do great things, and impact many lives."
It's okay to take breaks, and rest up. Just remember you have people's love and support, and to never give up.
Take care, Zara. ❤
I have several chronic health struggles right now, and I found these to be really encouraging ways to think about a chronic illness or disability. Thanks for sharing! ❤
Seeing you pop up on RUclips shorts a few times, I didn't think I'd relate that much to your experience, but this video really hit home for me.
I have different challenges from my disability but the themes of your struggles I very deeply relate to. My productivity is always up and down like a yo-yo and the same goes with almost every part of my life, and it's in multiple dimensions; for example my sleep is all over the place. Some days sleeping is impossible, other times I sleep through all my alarms, some periods of time I go months being able to sleep well or function without sleep. I rarely can point out any clear reason why things fluctuate up, down, left or right, it just is and often I never work it out and eventually it just clears up and life is still a struggle but it goes on for a while in a manageable way.
I really appreciate you being vulnerable and talking about this harsh reality of disabilities flaring up, despite how much it's making everything so much harder than what it should be for you right now. Thank you
As someone with a disorder that makes going out and doing daily life hard, I get, take care of yourself, and don’t feel guilty about making sure you feel good! It’s so fine, just take care of your needs, and post when you feel like it! We love you!
Thank you so much for this. 😊
I crashed pretty bad a few weeks ago (I have ME/CFS) and since then I cant really seem to get back on my feet again. So this video was really validating in many ways and you spoke about a lot of things that I also struggle with at the moment. 😅
Also fun fact today is actually MECFS awareness-day...
Me CFS 27 years pain worst symptom do you have lot of pain I now no I have eds
Thank you for speaking openly about this the first part of the video resonated with me so much I'd been doing better and then this week I'm having a flare up I have Me/CFS and I've had to stay home and not go to work because of my flare up and I need to be able to lay down and rest. It can be so disheartening and like you say we always look to find a reasoning behind it but it's hard to pinpoint sometimes there isn't a reason it just happens. It's not easy to accept where you are with a fluctuating illness you just are along for the ride no matter how much you want to get off because its unpleasant. It was nice to hear that I'm not alone in this and even though I know I'm not hearing someone explaining they're going through it too it helps feel a bit more at peace with it. Big hugs ❤😊
You are SO AWESOME for helping people who deal with similar chronic illnesses feel less alone! It gives me strength, and I can’t thank you enough.🙏🏼❤️
And…I’m in LOVE with your jumpsuit! 😍
Was looking for this comment and I fully agree with it I wish I knew where it was from 😅
Bro you’re literally like my biggest inspiration, you have so many challenges every day that you conquer, and while it may not be easy or simple, you continue to impress. It’s honestly because of your videos that I’m even capable of accepting my mental disabilities and not seeing them as just a burden. I really hope you get the rest you deserve and that you continue to inspire others with your content! Best wishes!
Thank you for sharing your story. I have a few disabilities and chronic nerve pain, so I can relate to you in a lot of ways. I have had a lot of seizures before, but I will never forget the severe one I had when I was thirteen on Christmas day. It changed me forever, and it is always something in the back of my mind that I constantly fear will happen again. I always feel awful about not being able to work too, especially after my family made sacrifices to get me through college. When you said "I didn't ask for this" and " the more I do, the more my body fights back", I almost started crying because I try and explain that to people so often. They don't always realize how much I have to push myself through pain to accomplish ordinary tasks like going to the store or showering, which I have to pay for the next day. I can't tell you how much I needed to see this video today, and how much it means to me as someone who is still grieving for the person I used to be five and a half years ago.
pretty much said the exact same thing to my therapist today! hope the flare up doesn't last too much longer, and that you can find little moments of joy in amongst all the shit (:
Lovely supportive and uplifting video for those of us who grieve our previous lives when we get bogged down contemplating our new normals. Gentle hugs. x
I’m so glad you shared this with us Zara! I personally don’t have any physical disabilities, but I am autistic and I love this channel, I love the awareness it raises, and you seem like such a lovely person.
Good job on your shower!
11:06 yes! I totally agree with disabling health issues showers are hard. Frequently too hard and get delayed. It would be good to work towards accepting that part of doing my best and having less shame over it.
Oh, Zara, I’ve been in an FND flare up for months now, so you’re not alone. I’m so happy to have found your channel, as you always manage to make me feel better. Thank you! X
I am also going through an FND flare up now too, I have to use a wheelchair every week and crutches at least twice a week. I agree that medical trauma isn’t talked about enough, FND symptoms are actually traumatic for me. My first tic (which the ambulance came), my first seizure, my sleep paralysis from the stress- it’s is a lot and don’t get me started on the many doctors appointments who mostly tried to dismiss me and say I was faking it. It’s awful and no one understands that just because I have tics all the time does not mean I am used to it. Zara, you saying you also have that fear makes me feel validated and understood, ♥️♥️♥️
Thank you for sharing. You are correct. Advocacy is a job!! Here's hoping you can find a more accessible home for yourself so you can be more comfortable. Love your content. It's a good reminder for those of us without your challenges to be grateful for what we have and be aware and considerate of those who are differently abled.
i love to see the drastic diffrences of how you handle autism and my own i was offfically diegnosed really really early like maybe when i was 5 or something and as i grew up i started doubting that i actaully had autism but then something kinda just flipped and i started explaining myself alot better and i started getting and using tools to help deal with constant day to day stuff such as loud sounds or being able to narrow in my vision with a hood
I know it's hard for you. And I get its hard to cope when other people are super normal and your not, but you are! It's a condition you cannot control, people should not judge you based on your disabilities. Stay strong Zara, keep grinding! 💪❤
I understand your pain, exhaustion, and grief. I wish I could stay that acceptance comes with time, but I have enough memories of being able bodied when I was younger, that I just can't get over being in this limited body. I'm 59 now, and things are not getting better. Let's pray for each other.
You have to go easy on yourself and not set unrealistic expectations for your job performance in your advocacy work, just like everyone else who’s self-employed. And please don’t be afraid to give yourself days off. You have every right to time off for illness, mental health days, family emergencies, and unpaid leave, the same as any other working person, not to mention plain old goofing off from work time, which everyone does, and don't let anyone tell you any different! You’re an admirable young woman as well as a role model for others to aspire to. Keep on keeping on!
P.S. I hope you were able to see some of the aurora borealis displays this past weekend. In my little corner of southeastern Ontario it was cloudy and drizzly--typical English weather!
sending love 💕 don’t ever feel guilty, you are so strong
I love your jumpsuit! I love the stars and constellations
One thing is for certain, and that is every single person watching this, will absolutely understand and feel you shouldn't feel guilty for not getting a video out because that's the nature of your condition, as you explain so well and so eloquently.
You're awesome 👌
No need to apologize. We totally understand. Lack of accessibility inside the home is quite frustrating. I really need a rollator & wheel chair but my home just won’t allow it. I do use my cane a lot but it often helps one problem & flares another. Definitely not the best option when I’m at risk for fainting. I wish I could give you a hug. I think we all need a big group hug. Much love! 🤍🦓🥄🤍
Also. Your cat is just precious! 😍🤍
oh no! hope your better soon
You are doing amazing, please never feel guilty for not working 🙂
Hope this flare-up will end soon, wish you all the best. Take care ✌️
Thank you for talking about this, I am really struggling too. You are valid (whoever is reading this comment) I am really glad that you have been able to unmask more and been able to wear awesome clothes, it sucks so bad that you are in such prolonged flare up. Sending hugs
I really appreciate you being wiling to be open about your life and how you're doing. Its easy for the internet to make it look like everyone's life is perfect but we only see such small snippets, we can't possibly know the whole picture.
I've only just found your channel through your FND and wheelchair advocacy videos, at a time in my life when I'm having the worst flair I've ever had and finally seeking diagnosis and accepting that I need mobility aids, and its much more comforting to see someone who is honest about the challenges of doing life while disabled than if you were trying to pretend that your disability doesn't change your life. I keep switching back and forth between being sad and being angry about being disabled and all the things i can't do and may not be able to do again for some time, if ever. It's hard to face and it's harder to ignore.
But seeing other people who have known their diagnosis for years, still figuring out what it takes to live life the way you want, idk makes me feel like I'm not a mess or a disaster for struggling to figure things out. Its normal for life to ebb and flow and for us and our activity to ebb and flow with it.
Did get my shower bench in yesterday tho so I can shower alone again! Trying to see the aids I need as tools to do what I want, rather than something holding me back has really helped with accepting stuff.
Hope you and everyone in the comments get some good rest today. Not just sleep, actual peaceful rest that helps your mind and body be at ease if only for a short while. ❤
Feel better!! ❤️🩹 I just got out of a FND flare up that just lasted a day. It’s horrible. You’re so strong. Sending love!❤️ ❤
as a "spoonie" I understand how some days are just not possible for any activities. I try to tell myself it will pass, but in the middle it doesn't seem like it will. It is a reall test of faith.
Thank you, Zara, as always, for your honesty and openness. You truly are an advocate! Frustration is a big thing for those of us with chronic illness and debility. Many times I still overdo it, am over ambitious, and then break down in tears because I run out of steam and the pain is unbearable. I do pace myself and rest, a lot, but want or have to do things too! I live on my own and have only been shopping in person twice in about 5 years. I thankfully have wonderful friends and sometimes get online delivery too. I have one friend who really gets me and that makes such a massive difference, but, yes, the majority only ever see me on a good day (or a good couple of hours) and makeup, for one, makes me look pretty presentable! I identify so much with the showering and getting ready struggle. It can take almost all my "spoons" just to get ready. I do so wish others could understand that and why I rarely go out and about because I just don't have the energy. And it's not just physical things that bring exhaustion. Conversations, reading, watching TV, just sitting in a chair, can all be too much. So, thank you for sharing how it is. I pray this current flare up of yours will pass quickly and you'll be able to get back to things you enjoy. God bless you! 🙏❤️😘
4:35 Zara Zara Zara. I so feel this. I am also dealing with a flare of my conditions - and ALSO have felt like mentally, this year was one of my best. Not physically though which, for me, like for you, has been strange and weird, the polarization of the two. For what it's worth, I'm with you, you are totally not alone. (And on a fun personal note I too have been space obsessed since forever (as long as I can remember) and that jumpsuit is awesome and I 100% support your not caring what the outside world thinks because you rock it like a boss! Sending you lots of love. Here's keeping my fingers crossed that we both get some hints or something as to what's happenin. Also thank you for talking about this - I do agree with you and also was considering posting something myself about the lack of energy DURING a flare. Exactly this. So thank you for being a part of my voice. Tons of love honey, & a Big hug
This video was so well-timed. I’ve been in a flare up for weeks and although I’ve been chronically ill for years and am generally pretty used to it, flares can still be really hard mentally and emotionally. It’s hard to function like your normal self when you’re dealing with illness and pain. Thanks for the reminder that it’s okay to be struggling.
Also loved the cat cameo.
Zara, your a very inspiring young lady. Much respect for your honesty and sharing the bad days. Your mind is racing but your body is saying no. I cant imagine how fustrating that must be. What you may be lacking in mobility right now you more than make up for in creativity and passion, use that as much as you can.
Rest up and take time to heal. The good days will come and they will feel all the more special when they do ❤
I'm currently in my worst long term flare up of CFS/ME and have had to quit my job qnd completely alter my life and expectations for the near future. Although we have different conditions, I identify with a lot of what you've said and I really appreciate the effort you have used to make this video. So many people just don't get what I'm going through and it's so isolating and frustrating. I totally agree with grieving a non disabled life, and also finding moments of joy and goodness in the life that is being lived now.
I have me fybromyalgia with elements of fnd do you get much muscle pain my worst symptom.are you hypermobile 27 years me
As someone with chronic illnesses, I understand having difficulty doing simple things such as taking a shower some days. It's okay to take time for yourself, especially if you're not feeling well. You don't need to feel obligated to post videos, and you don't need to feel guilty about not posting. The only people who will complain about you not posting are the people you can afford losing views from. The people who care more about you and your health than just the videos are also the people who will still be waiting for you when you're ready to come back, and the ones who will be happy when you post, sad when you're not feeling well or not posting, BUT they will not get upset at you for taking care of yourself and putting yourself and your health first. Love you Zara ❤
i've been in an autistic burnout for a month or so, and it's been adding up since last year i think.. plus my lupus really does get worse with stress, so it's weighing down on me too. i've been feeling so inferior and incapable lately. your video is a beam of sunlight on a gloomy day. best wishes and huge thanks!
so well spoken. thank you for the realistic and informative videos zara
I think that ppl who don't understand why you wanna talk about your struggles and symptoms areon the right channel 😅 I think it's important for others to know that they are not alone.TBH everyone is struggling with something but on social media ppl tend to show only filtered stuff, to brag,that's why channels like this are important.
I really appreciate you showing the reality of disability and flareups, I know it’s hard to do because we don’t like people seeing us when we’re feeling vulnerable. Also for me it’s just very validating to hear someone talking about FND, I had a very traumatic experience a little while ago with medical professionals dismissing my seizures so it’s nice to feel a bit of community
You make me feel so less alone in my health journey. No one around me understands that I can't do things sometimes and it's not my fault or that I'm being lazy. They can't understand how much pain I'm in sometimes. Also your comment about clothes, I've been looking for more flowy dresses. I love being dressed up on a daily basis, so flowy dresses give me the look I want while being comfortable!
I admire you so much! Despite your young age, you're a shipload of wisdom based in experience! Dealing with flares is a real challenge for sure!! Thanks for educating here towards awareness and empathy! Kudos on the shower during a flare! Can totally relate! Bless you, dearie! Feel better soon! 🩷💐🙏🕊️
Zara HI. Want to tell you that just being you, you give so much to the world.and that I follow your journey for a while now and you give me so much inspiration. so, just know, that you are enough!It will get better! and I am sending you a big hug.
It’s okay we completely understand! You don’t have to explain yourself, in fact some of us are just happy you posted this because we are going through the same thing. I have been having a lot a flare ups lately too, and I among a lot of others haven’t been giving ourselves grace for it. The world we live in tells or shows us that it that constant functionality is a must. It is great that you and others are here to help and show others that it isn’t true or very positive. I am glad to see you back, no pressure to post please and if you do it doesn’t have to be perfect or functional 🥰!
Oh man, I had a really bad FND flare up yesterday so this vid was very relatable😭 I was fainting, and tremoring, couldn’t walk by myself, and my body wasn’t working properly (kept dropping things and fingers wouldn’t move right). Migraine all day and I was so dizzy I couldn’t even read very well 😭 Today is much better tho. Can’t really feel my toes but not as dizzy or shaking as much. So grateful that you’re out here spreading awareness cause man is it rough LOL 🙏❤️
Sending all the best zara. Proud of you
This feels so real. As someone with hEDS, I understand what it is like to have good time sand bad times. my migraines, GI probmems, and POTS have been way worse lately. I also have been off my ADHD meds for a while. so everything just feels so hard right now.
On the bright side, your jumpsuit is AMAZING!
Thank you so much for saying this. I’m having an FND flare and I’m trapped in bed as my house isn’t accessible. I’m coming round to the realisation that I need a wheelchair so I can get my life back a bit. Thank you so much for telling it like it is. ❤
i am also disabled, i have to use wheelchair a lot of times, not same as you, my body is ruined by becterevs for years without diagnosis. But the fact that you even with all you go through manage to post this, and explain so good what you go through, is amazing. You are a very strong person. Well done. Also, your cat is awesome..
Thank you for sharing. Your words did not only help you yourself, they also helped me. I have some struggle as well with my mental health and hearing that I am not alone and that it is not unique to me to have issues, helps me a lot to cope with the situation at hand. Thank you. I hope you regain your spirit and strength. Thank you for being so kind to all of us. Feel embraced in your moments of loneliness and be aware that you are not forgotten by any of us.
thank you for sharing this with us, we understand. you arent alone and you make us feel less alone, too.
(also your cat is very cute!!)
I really needed this video today.
0:30 i'm watching this in the middle of my periodic paralysis flare-up, actually!
I understand you ml. I'm undergoing exams for pots, my heart rate goes to 180 when I run, and 150 from simply sitting in class. I'm so sick of this and I want it gone, I miss being healthy
Thank you so much zara, I have recently got diagnosed with fnd and need. your videos really help me . Thank you so much, and I am sorry you are going through it so much lately . I hope you feel better soon x
Thanks for sharing; best wishes for your health.
I really needed this video today. I have been struggling so much and been so hard on myself. I started to cry at 12:45 cause like you I've been disabled for years and had my conditions for a long time but there are definitely periods of better and worse times. I am only a year older than you and I thank you for your content. It's hard to accept being disabled and I really really try to pretend I am not, but I am back at a point where I cannot ignore it/mask anymore and it hurts in many ways. Keep caring for yourself as best you can.
Last Summer I was unable to work and I really wanted to be well enough to work this Summer*. I almost feel like I have failed but I cannot hold myself to the standards of abled and neurotypical people, its not fair to myself to compare and its def not right for me to keep beating myself up about not being able to do certain things. :(
I love your space outfit! Thank you for sharing. I enjoy your content 😊 ❤
Actually this is a great video! In the internet there are not that much video that share the difficult part, when you are very unwell.
Yes. Because we are low energy, we feel vulnerable, and also it is hard to share this.
Great video, congratulations
i first started watching you when my tics started
its weird how im sitting here now, with diabetes (t1)
somehow this is really relatable
i have been so tired for the last period (i dont even know how long)
and its just nice to know that im not the only one that cant really get anything done, and that is valid
diabetes&autism just makes this weird combination of everything is too much and im completely drained after school
Never feel ashamed for not being able to post. You need to do what's best for you.
Zara, I am watching this and I am empathizing so much. Your beginning wording is exactly what I need to get across to SSDI; today I received my denial #2 based on the lack of evidence in the doctors files. I have 60 days to appeal. So all of your video I’m relating to. Thank you for putting your voice out there. I wish I could give you a big hug right now.
You are beautiful inside out. Keep going, girl. You have our love and support.
Thanks for sharing your experience! I know it means a lot to so many people. ❤
thank YOU so much! ❤ i couldn't do this without the support of you guys watching :)
i hope you feel better soon Zara 🙏🏻❤️
I've had fnd/NEAD for 16 years now. I too am struggling with my symptoms at the moment so I will send you gentle hugs Zara x
Zara I love your space ofit ! I have different chronic illnesses than you but I totally understand grieving what you used to be able to do.
You are amazing Zara. Im proud of you
Sending love 🤍🤍🤍 and love the jumpsuit, totally my style 😻🛸
Your cat is adorable! You're so well spoken. *hugs* about missing gymnastics. Missing ballet and lyrical dance makes me cry.
The jumpsuit is awesome! Wish there were ones for tall people with "typical" sized legs.
Your creator job is HARD!
I write technical and advocacy content on LinkedIn (usually cat themed), my blog (which I code), and started doing tech talks. Video is so much more involved than all of those combined!
People keep wanting me to add RUclips to my content but I just don't have the spoons.
Congrats on showering! Mobility + neurological issues + fatigue + wet slippery surfaces (even sitting down) don't mix well.
I cut my face open a couple of years ago while standing and trying to shave my legs, and had to have a bandage on it right where my mask hit my face (it was during the pandemic).
I didn't have any of my diagnosis at the time, so didn't really understand how much mobility and balance I'd lost. In the following two months, I was diagnosed with Orthostatic Intolerance, PPPD (a vestibular disorder), a change in my migraine disorder, upper range hearing loss, and tinnitus. I now finally have an hEDS diagnosis and will have my first custom titanium wheelchair before my birthday.
That space themed top is awesome
Hugs to you Zara, I hope your flare up eases up soon. Please give yourself some extra special care and love, you deserve it 💯 for being the wonderful person who you are. I appreciate you and care about you! ❤️
Thank you for sharing. I have lupus(SLE) fibromyalgia, arthritis, ITP, asthma and raynoads syndrome. Like you I have good days n bad days, I'm at a point were I'm thinking of getting a mobility scooter so I can get out more as walking can be very painful, the people that know me well are very understanding but others can be less so n it can affect how I feel. Sorry to go on. I hope you're having a good day, keep smiling. ❤
I feel ya I really do I have a severe anxiety disorder as well as a panic disorder as well as scoliosis and some underlying health issues as well. And I have felt so sad and depressed lately, I’ve really good relationship with God and genuinely try to turn him through a lot of stuff but recently I’ve just felt so disconnected from everyone including him, which is such a rare for me so I completely understand what you’re saying
I am obsessed with that jumpsuit! And also a little jealouse... 😂
Im sorry youre going through a rough flare up 💜
I really understand your videos. I developped something called Vestibular Hypofunction, which means that sometimes (way too often) it's not visible to a lot of people but sometimes I can't walk. I can go a couple of days with no problems or hours into going into the city I suddenly can't walk. I only noticed recently that it's pointless getting a wheelchair because most public transport is not wheelchair accessible. So I feel confined to home. It kinda explains why I don't see many people in a wheelchair in Antwerp. (Good going Antwerp - Much more sense to keep people at home than make it possible for us to get to work). I guess like most people I hadn't noticed this before. We need something like in the US to ensure that people with a mobility problem can still lead an active life.
I am so proud of you for talking about this and being so open 💖
so much love 🧡
@@Zara_Beth your cool I like you
@@Zara_Bethyour my best friend ❤❤❤❤❤❤❤❤❤❤
@@Zara_BethI’m also autistic 😊😊😊😊😊
I'm autistic and have FND. I really appreciate seeing content creators talk about relatable experiences. FND is a really hard condition to talk about because it can vary day by day, and I find it hard to distinguish which aspects of "brain not working today" are FND Vs autism.
I hope you feel better! Thank you so much for this video. It’s so hard, going through a flare myself right now and remembering that this is normal for a person with a chronic illness (fnd/pots) ❤
Thank you for sharing! ❤
Sending you so much love. Be safe x
I wish you the time and patience to cope with how things are ❤
I have very different health issues but can fully understand the frustration and stress that the bad days cause
I needed to hear that honestly
Hi Zara, never apologise.
I have a chronic condition and Im in a huge flare up. Ive luckily lived alone for a lot of years but moved back to my parents about a month ago. I’m not able to work right now, wasn’t eating and just not looking after myself. The pain and fatigue are just awful and the guilt is worse
My legs feel tingly and burn but I’m not sure how to explain it so I get it.
Btw love the space themed clothes.
You do you
Best wishes from me And nosey boops from my cat
I just saw or came across you 2 weeks ago and I'm happy to have. I don't have any disabilities but mostly looking for friends keep up the amazing content 😊😊
love the outfittt ❤❤❤
Dear Zara I have FND & I so get exactly what you are saying , I am 55 & was told I have FND only 7months ago I am fighting with how much every day FND changes from day to day. I really Apeecate your posts & you help me feel less alone in this . Thank You So Much for Sharing ….