I'm in a Health Flare-up 😅 | Grieving a Non-Disabled Life

[@Lost_Emopo]

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)

[@cindyc1700]

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.

[@jelle-tje6064]

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.

[@holisticleedriven8532]

Ikr? Not enough spoons in my hand today! ❤

[@Issy_Owen]

Can everyone take a moment to appreciate Zara's cat in the background ❤😻

[@joannewojcik.7631]

Aw gorgeous isnt it i love ginger cats 🐈🐈🐈🐈🌹🐈🌹🐈🌹🌹🐈🐈🌸🐈🌸🐈🌸🐈🌹🐈🌹🐈🌹🐈🌹🐈🌹🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🌸🐈🐈🌸🌸🐈🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🐈🌸🌸

[@duskwishing]

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. 🥰

[@SamirCCat]

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.

[@duskwishing]

@@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.

[@SamirCCat]

@@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

[@longing_for_rainy_days]

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.)

[@Officially_Nat1]

I’m also disabled and sometimes I get flare ups too. Hope you feel better ❤

[@Hermitthecog]

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.

[@Truerealism747]

Me to along with heds do you have fybromyalgia to

[@LPCubing_Offical]

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 ❤

[@Lost_Emopo]

My tics have done this recently too! Stay strong, you're not alone :)

[@LPCubing_Offical]

⁠@@Lost_Emopothanks :) the same to you :)

[@space_nebula]

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. ❤

[@BeKindAllTheTime]

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! ❤

[@FoodieForce]

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 ❤

[@NotSunFLoW3R]

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

[@GordonClare]

Thank you for sharing everything about being disabled

[@brynnskitchen]

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!

[@Talesinmaking]

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 ❤😊

[@spencer7151]

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...

[@Truerealism747]

Me CFS 27 years pain worst symptom do you have lot of pain I now no I have eds

[@carriepybus8929]

💜 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.

[@PlanetZhooZhoo]

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

[@HeatherM-o9t]

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.

[@ecox799]

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.🙏🏼❤️

[@aalit3899]

As someone who was diagnosed with FND last month but have been dealing with symptoms for a few years and not knowing what is going on with my body videos like this is really helpful not only educationally but also really helps my mental health so thank you so much for helping me feel seen and giving me hope and I hope you and everyone else going through this and other health issues is as healthy as they can be and is ok as they can be :)

[@shadow_song]

0:30 i'm watching this in the middle of my periodic paralysis flare-up, actually!

[@LucyWithAutism]

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!

[@Sukunasbathwater]

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!

[@mrsubtlemouth6838]

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 ❤

[@linebabthebuilder5422]

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

[@barbaraelrod2336]

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.

[@emmajwilkins]

I completely relate to this. I have EDS, and that feeling of being alone with a scary symptom that you’ve just been left to get used to…just because I’m used to it, doesn’t mean I’m okay. My jaw subluxes all the time and the hospital showed me how to *hook it back in* and then were like “okay so you’re good now”. It’s still as not fun as it sounds, even if I’ve had it for years.

[@mnlightshimmer9148]

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! 💪❤

[@TomBrzezicki]

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!

[@KrystynaSuchomska-xy1rn]

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, ♥️♥️♥️

[@qryptid]

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. ❤

[@fayerussell1429]

Im going through a flare up right now and i found this to be super encouraging it is very reassuring

[@EmOrganically]

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

[@DoubleDiva]

And…I’m in LOVE with your jumpsuit! 😍

[@dragontamagotchi4941]

Was looking for this comment and I fully agree with it I wish I knew where it was from 😅

[@nerveendings]

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 (:

[@HHUKHavenHolidaysUK]

oh no! hope your better soon

[@lisamlees]

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

[@rachelelizabeth2483]

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.

[@Truerealism747]

I have me fybromyalgia with elements of fnd do you get much muscle pain my worst symptom.are you hypermobile 27 years me

[@artgirlmadsx]

sending love 💕 don’t ever feel guilty, you are so strong

[@Cady1322]

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!❤️ ❤

[@alentia_thegreat]

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

[@VintageRayne]

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! 😍🤍

[@rachelfine2181]

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.

[@wickeddummy]

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 ✌️

[@TheLazyDaze]

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 🙏❤️

[@nfah86]

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! 🙏❤️😘

[@Quiltingsando]

Thank you for sharing your life with us and I love your outfit.

[@2amresearches]

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!

[@jazzrat2000]

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.

[@MeroxNorway]

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..

[@m0_5ster]

Loving the heart stopper books in the background

[@user-blackcat-g17]

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.

[@AdelaideSaywell]

I am so proud of you for talking about this and being so open 💖

[@Zara_Beth]

so much love 🧡

[@JordanS-ww4eu]

@@Zara_Beth your cool I like you

[@JordanS-ww4eu]

@@Zara_Bethyour my best friend ❤❤❤❤❤❤❤❤❤❤

[@JordanS-ww4eu]

@@Zara_BethI’m also autistic 😊😊😊😊😊

[@unofficially-ace]

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

[@Gigibeen02]

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

[@BeKindAllTheTime]

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 ❤

[@librarian971]

Thanks for sharing; best wishes for your health.

[@melanierosalez6989]

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.

[@huum4430]

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

[@SerbTerm]

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 😊😊

[@desireeginn13]

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!

[@thyway8894]

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 🥰!

[@YochevedDesigns]

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.

[@ashleyd6338]

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

[@hollyavillella554]

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! 🩷💐🙏🕊️

[@nortonr]

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

[@estrelletapolar]

I got my diagnosis during a 2 year break from university, tight schedules, members of my family and even my friends. First I got my ADHD diagnosis in late 2022 after my life fell apart and I got out of a toxic relationship and I started off with stimulant meds but no therapy. Then I got my ASD diagnosis in late 2023 and started therapy which I had never considered before, I was introduced to the term "dissociation" by my therapist when I mentioned that I didn't understand how I could be autistic when I could enter autopilot mode in stressful situations without breaking down in tears, even though I would be completely exhausted afterwards and endure hours of migraine and brain fog. I slowly started to become more aware of my needs and less tolerant to changes in routine, toxic/stressful environments and abusive relationships or what I called "confrontation". This included my relationship with my father as I discovered it was actually emotional incest thanks to my therapist (emotional incest isn't actually incest, that's just the name it has because the child takes the role that should be performed by a therapist or another close adult). This is the first summer I spent with my friends after receiving BOTH diagnoses, and GOOD GOD I do feel extremely different. I feel I interact with people like when I was a child: funny, bubbly, hyperactive, I laugh more and I say what comes through my mind, no filter, no hate, not self conscious, just PURE. At first I felt like a weirdo, I asked myself "Why am I acting like this? Everyone looks so mature in comparison" I ended up remembering how I used to be before the social pressure and bullying hit me in the face and realized I just UNMASKED and this is how I really am. My parents are A-Holes and still are after my diagnosis, but thankfully my friends still adore me and I feel like the luckiest person on Earth. Thanks for coming to my TED talk

[@moniquesproson835]

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

[@debbiepierce3045]

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. ❤

[@christine1744]

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

[@jelle-tje6064]

Wishing you all the best. You don't have to feel guilty. We didn't choose to live with our disabilities, it's more like our disabilities have chosen us. All we can do is to keep fighting and not giving up, even though it's really hard sometimes.

[@madelinescyphers5413]

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!

[@lz02711]

I love your jumpsuit! I love the stars and constellations

[@OceaniaOrchid]

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.

[@vv_gumlx6363]

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!!)

[@nikkimyers4467]

"grieving a non-disabled life".... Yes. I went from a flare up ending more than a year ago to feeling amazing bc I could function and had individuality (that's not the right word but brain fart) to having to sell my car and getting fired bc I was missing work bc I couldn't walk and having a seizure at work.... I lost everything again and it's been... Devastating and isolating. I cry so much and I'm so tired. I can't see a lot and I get so dizzy I can't walk. I have seizures (functional ones) and spasms... And so much more. I'm going to see a psych doc who specializes in FND and chronic issues this week and I'm not gonna lie... In kind of excited... But scared. Thank you for your videos.

[@_.a.t_]

so well spoken. thank you for the realistic and informative videos zara

[@theorganicyorkshirerose]

I love your space outfit! Thank you for sharing. I enjoy your content 😊 ❤

[@chrishughes3882]

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.

[@neilkelsey1762]

That space themed top is awesome

[@no1gracieabramsfan13]

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

[@Issy_Owen]

Please please don't feel guilty Zara. We totally understand and yes, even though we love when you do upload, the point of your channel is about your disabilities so you couldn't have any more understanding viewers. You wanna talk to someone new I'm all ears❤😊

[@Titchyhill]

Honestly, I absolutely admire you for being so open etc. FND is horrid. I am the same with my legs in (dystonia, paralysis etc.)... It's one of the things that has been consistent for years, the same with weakness in my arms has been. Touchwood what I call vibrating I am getting less often at the moment, but it really does feel like you are buzzing, its so weird. To try and keep myself at a fairly (out of flare up) consistent okay level, it's pretty quiet life-wise but even then, you do anything like having a shower and you just HURT. I am in a non-acessiable house our only toilet is upstairs, so I use one of those horrid portable ones during the day, it's not dignified in the slightest but well. The worst thing I have to deal with is that my doctor refuses to refer me to a wheelchair place, so I am pretty much housebound. I can't stand up for more than a 6/7 minutes on a good day without being in some kind of pain. With the arms being a problem I don't have the capacity to push myself in a wheelchair so until I can afford to buy an electric one, I am pretty stuck and it sucks. I 1000% grieve my old life as I worked in events, I used to travel around the UK working at different events, venues, festivals etc. going out to see friends playing shows... just seeing friends and going out randomly, i miss it all... as you can probably imagine with all that, now being stuck in one place is beyond strange for me.

[@DoubleDiva]

Thanks for sharing your experience! I know it means a lot to so many people. ❤

[@Zara_Beth]

thank YOU so much! ❤ i couldn't do this without the support of you guys watching :)

[@TheVallex]

Sending love 🤍🤍🤍 and love the jumpsuit, totally my style 😻🛸

[@stevenford4719]

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 ….

[@kristinamchale7727]

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.

[@Scarygothgirl]

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.

[@nickydaviesnsdpharms3084]

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 👌

[@EllyMae48]

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

[@philurbaniak1811]

👍👍 sad to hear it's quite tough right now, but I'm glad you're still going, and I'm grateful 🙂. I have good and bad days and the "good" ones aren't necessarily _great_ 😅 Fingers crossed for more comfort, capacity and contentment for all 💛👍

[@jeff1563]

I get exactly what you are saying. I have rheumatoid arthritis, IBS , copd , a bad hear valve , and gout. There are days I wake up and can barely move for several hours and have 0 energy or like rite now the gout in my left foot hurts so bad just putting a sock on feels like someone is smashing my foot with a sledgehammer. Some days to add to this my guts hurt so bad I’ll get shooting pains in my abdomen to the point I have to just stand still because it hurts so bad I can’t move. To top it off it’s like a work out just to walk from my bedroom to the kitchen because I can’t breathe because of the copd. Looking at me you would not think I had any health problems unless I wear shorts and you can see were I have had 7 surgeries on my right knee and several on my right ankle. I just had to have the toenails removed from my big toes and acid put in the area were it grows to prevent the nail from growing back because my toes are all growing crooked from the RA causing very bad in grown toenails. It sucks because the job I have I’m on my feet all day and walk about 30 or more miles a week. I have applied for social security disability and I’m hoping to get an answer within they say like 8 months. It’s the last thing I wanted to do was go on social security disability because I have always felt there are people out there that deserve it more than I do. But I’m to the point every night when I go to bed I pray I don’t wake up. I wish I would just die so I don’t have to be in pain anymore. Don’t get me wrong I’m not suicidal but I’m so sick of the pain it would be a blessing to me to just die and be done with the pain. Heck half the time I try and sleep I’m lucky to get 2 to 3 hours of sleep off and on through the night because of my RA and osteoarthritis my hips knees shoulders hurt so bad it wakes me up in agony all night. So I know exactly were you are coming from and if you don’t have the energy to make a video believe me we completely understand. Love your channel you are a trooper.

[@janinejacobs9478]

I have been diagnosed nfd and the last 6-7 days have been through flare ups. I feel alone all the time. Hard when your a parent too emotions come into play can become difficult. I also already suffer with CKD (Chronic Kidney disease) so the Flares ups are from back and ribs which then leaves me having a fit straight after because pain is a blackout trigger.

[@studiotom]

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! ❤️

[@Nick-eb5un]

We love you Zara

[@macrabbie5584]

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) ❤

[@ayahomran-randall2646]

You are beautiful inside out. Keep going, girl. You have our love and support.

[@jillwoodral3518]

I really needed this video today.

[@lesakingsbury1612]

Your guidelines just came up before I commented and that made me really sad 😢 it is terrible when we have to ask this, just kindness and respect, it should just happen BUT I know it doesn’t. I wanted to thank you for your video Zara, you help me to remind myself that I need to be kind “to me”, people can be very judgmental and cruel because we don’t “look disabled “, thank you 🙏🏻 for helping to educate and spread the word about FND. Sending thanks and love to you from Australia 🇦🇺🫶🏻💜🫶🏻💜

[@clairerobin8009]

Sending you so much love. Be safe x