Comparison is the thief of joy. It is one of the hardest lessons I have learned in life. I have now accepted that my life will not look like many others in my social group, and that is just OK. I don’t have to like it, but I have learned to accept it…most days
i recetly listened to the imp and skizz podcast about comparison is the thief of joy and it taught me a lot including what you said, everyones different and that can be hard to accept sometimes
Someone in my discord said for chronic illness it's not FOMO, it's GOMO, or grieving missing out. We have an immense grief for the life we had before/can't have.
This is so true. As the pieces that made you the person you are get slowly stripped away, it’s hard to not grieve the life you had. I used to hike 20+ miles through rough terrain. Now I struggle to get to the toilet. That’s a hard pill to swallow, especially at 35.
@@emilydowden9038 I’m so sorry to hear you relate at such a young age. Take time for yourself, treat yourself well. Never apologize for needing help. You don’t have to apologize for existing. I’ve made that mistake and will never do it again. Never apologize, your illness is not your fault 🙏🏻
@@GoblinModeMVP Thanks, really good to hear someone say it. I know it isn't my fault, but I'm so often mis treated for my needs and things. I was literally apologizing this morning because my partner was running late for work because we woke up late and we planned on getting donuts because I just moved back in with him and we were celebrating me leaving my last bad living situation, and even though he set the alarms and he woke up late and he wasn't upset with me, I found myself apologizing and he said for what and I said for existing, and needing things. I feel so bad asking for or needing anything, I find myself saying for existing too frequently while saying I'm sorry. I was recently, well i say recently, time flies fast, but back in April I was fired illegally due to discrimination about my disabilities, despite having already mentioned everything and done anything I needed to do to be properly accommodated, and not even asking for any real accomodations outside of being able to use the restroom without being judged and as needed, and sit down in between tasks, like, I would be standing and doing nothing, can I sit and do nothing, and I would always get up when asked no problem no complaints. I always have to spend between 10-30 minutes in the restroom, but sometimes it's way longer, but I try to keep the struggle at home, even this morning I think I've been in here 2 and a half hours now. At work I never ever spent more than 50 minutes a few times, but I always tried to keep it between 10-25, and I would only go once in a 6-10 hour period, making my own issues worse for myself at my home, to try and accommodate them, my other coworkers or higher ups, when realistically if I wasn't being given my mandatory lunch break of 15 minutes, which I never got, and 2 to 3, 5 minute restroom breaks as most able bodied people get to have in a 6-10 hour working shift, if all that is put together in one restroom break I should be allowed to take my 30 minutes to actually empty my blatter enough to function at my job, without being forced to clock out and lose more hours I didn't have money to lose, instead of being forced to damage myself further so they can use me longer and pay me less and not give me the hours I need to support myself and my family. And yet despite accommodating the establishments needs, I was still asked such a blatantly discriminatory and disrespectful rhetorical question of "what are you doing in the restroom thats taking you so long" and when i answered it anyway, even though it was obviously just a rude remark either to make me feel guilty for taking so long, or to insinuate that I was BSing rather than actually using the restroom, but i still answered calmly and properly and then sent screenshots to my manager sharing the information regarding some of the symptoms of my disabilities that were making me take so long, she ghosted me and started cutting my hours even worse not even half a week later, lied to me about the reason, and when I tried to speak up about it I was ignored further, until they were cut so drastically past living wages that I had to speak up yet again, wasn't listened to, had my job threatened, then went to higher ups for help, I just wanted hours to live and feed myself/ loved ones, but then was fired by them for "no reason" in the middle of a discrimination claim, after working there with no problems for 2 years, less than 2 weeks after speaking up the second time about my mis treatment. There was much more, but that's the gist of it, and it just, makes me feel really like I am in trouble for existing when nobody believes you if you don't look disabled, and then they judge you when you do look disabled because you must be faking it if sometimes you have good days and sometimes you have bad days, and they don't want to take the time to learn or listen why. When you lose out on opportunities for fun or growth and achievement, when you're always excluded where you could function and force included when you can't to try and watch you still barely manage so they can say they exposed you for lying when you aren't because you barely managed to do something you can't do or shouldn't do because you can't lose your income either. Sometimes my issues are in remission, and since I have invisible disabilities (not really invisible if you actually looked or read into them, but people dont want to do their own research, would prefer to accuse you of lying instead) but because sometimes I look okish, I'm expecting to always be the same when I'm at my worst as I am when at my best. It can be so hard sometimes to feel like I am not wrong simply for existing when everyone tells you that you are doing things wrong when your just doing what you have to do to live or even use the restroom and work properly afterwards. Anyway, geez, I always talk so much when typing anything, just words come out faster in person so it feels like less but feels like an essay when you have to read it. Thank you for taking the time to leave me a reply, sorry about my long reply. Thank you for expressing that it isn't my fault and I'm not wrong for existing, without me even mentioning that I feel that way. You must understand very well the judgement that comes with life struggles and or disabilities if that was immediately your response to me, so always remember the same applies to you. I bet you are really kind and deserving of proper treatment (not that anyone should be mis treated 😂) but I hope you get what you deserve and I hope you are able to become healthier again over time and not have to worry about what's eating away at your life energy any longer than necessary. I long to hike, and I wish to run into you hiking along the same path one day, able to enjoy the weather and the view and the exercise without pain, fear, judgement, or general handicaps taking from your experience. Idk what your lifestyle looks like, but even if you don't have bad life style habits, adding better ones to your plate might help some of your issues, like taking out ultra processed foods and eating organic home made meals along with even minimal daily exercise or activity, both physically and congestive activities, is such a big step towards better health, I know that's what I've been doing and it has been helping and is about to be so much more helpful and better now that I've changed my environment. It's not a cure or fix all but it's a start to better health, and you really never know where that start might finish, miracles, crazy healing of the body, does happen, sometimes people come back from deaths door new and fresh and capable, especially at our ages. Your body has the best doctor in it, your immune system, so if it can be allowed to properly do it's work, people can recover from nearly anything. Our bodies were created self sufficient and self healing after all, a masterpiece, a work of art, so I pray that you regain your strength, health, youth, and can travel again freely to experience all the joy and beauty you once were able to travel with. Thank you for sharing your words with me, and again, sorry for the long read on this end, but I hope at least it isn't a bother or too disruptive to your time and day if you do get to read it. Thanks again, and I hope you have a good day 😊 also ps lol by the end of this its been another hour and a half of struggle, so about four hours now trying to pody, and it's not because I was typing, i don't usually spend time on or even really look at my phone while in here, and it takes just as long then, but just was responding to comment replies and figured if I'm gonna be stuck on the toilet for hours might as well do the other multiple hours activity, at least that's how long it takes when you type like I do, better kill two birds with one stone, but again it really would have only been a five minute rant if I didn't have to type it and then edit and spell check because there is auto correct which almost always auto spits out the wrong words 😂 but anyway again, have a great day, and thanks for your time. And good luck with life and your struggles and goals 🙏✌️
Not many people actually understand this! I can try to explain my chronic pain and illnesses but no one really gets it unless they go through it, it’s always rough :( but im glad to have found this channel and other people going through this
"Normal" healthy people don't understand. Which makes us not only suffering from out disabilities, but also misunderstood and sometimes gaslighted. I hate that I can't make people understand my experience, and that they always think I can do more than I'm actually capable of.
@@SamirCCat us vs them world is not fun. There are plenty of "normal" healthy people that do understand. There are also a lot of idiots in the world. That's it.
@@musical.theory Aqui no Brasil, O povo respeita muito, é amigável e compreensível. A questão é, que é algo que muitas pessoas não conhece, por incrível que pareça.
Zara, TAKE YOUR TIME!!! We love your videos, but the one thing we love more is you being healthy and comfortable! Take a month off, hell take a year off, as long as you are ok we are happy.
I push myself back a lot and tell myself that I’m not “ill enough” or “disabled enough” to use a mobility aid or complain about the pain I’m in and it’s really hard to just tell myself that it’s ok to be disabled or chronically ill, I’ve just come back from a short holiday and I’m already going into a flair up 😓 it’s really physically and mentally challenging just existing now, but I’ll get through it and I hope the person reading this knows that it’s ok to not be ok
Not being ok is not a state you choose to be in, so yes, it's ok not to be ok. No one chooses to have a disability of some sort. I myself am not disabled, but I find no reason to belittle or judge people who are so. I wish you the best in everything you manage to do, and not do.
I might not be able to relate to what you are going through, but I can still respect those difficulties and empathize. So rest up and don't blame yourself for your physical condition and limitations🙂
I hear you. I'm physically disabled, but I often feel I'm "not valid enough" because I can walk. There was time when I was paralysed, but it passed. Other things stay. It's not only about walking or not walking.
Having people like you and the folks in the comments really help me remember that I'm not alone Ik I don't have it as bad as a lot of people but it still hurts that I can't do everything others can do I have a slipped disc for the past 4 years which restricts me from sitting down and as a student still it's something i cant avoid I feel so much pain and pain killers don't do much My condition shouldn't have lasted for so long and we're not sure what's wrong The FOMO is also very real I can't join any clubs I go home right after school and just lay on my bed for hours I feel like my teenage years have been wasted (I turned 17 this year) so from 13 years old I've been stuck like this Everyone is so strong for getting through life despite their own health and psychological issues Love yall
❤ Idk if it's consolation but teenager season of life is not the best for maaaany people anyway 😅 I am 31 and I like the maturity, independence and options I created for myself and which were absolutely not accessible for me before 25-ish. But I see you and your struggle. I understand and share these feelings and it's freaking unfair that we can't do things we want.
I've definitely been having one of those weeks full of disability grief and frustration! What helps me most during those times is finding comfort in the disability community sharing things like this, so thank you
It helps me so much too!! My disabilities are mostly chronic mental ones, but I relate to every single word Zara said. Do you know any place online with disabled people that share and support each other? I only find bad sites where people are mean (triggering my moodswings) or it's inactive for week at a time. Do you have any online forum or other place that you recommend? I'm very lonely, but too tired and fragile to socialise more IRL.
I love your videos and the representation you share! Your openness to your FND allowed me to know a good clearance of info on it, recently a classmate got diagnosed with it and funnily enough I am the one who told her things about her own disability. Thank you ❤️❤️❤️❤️❤️❤️
You are so right that holding ourselves back gives us independence. That’s something I’ve been learning recently. Thank you for sharing and reminding me I’m not alone!
Yes! I spent the entirety of last week not doing much outside of school except for homework because I went to a concert on Friday, so I needed the energy to be able to be independent. It was also homecoming week last week, so I had to skip out on a lot of homecoming events to save energy for the concert and for the dance (that required a little less independence because I had my friends with me) ❤😊
Sending you hugs, it is such a rollercoaster. Pacing is such a tough thing to continually do, nobody with chronic illness will ever be 'perfect' in pacing themselves. I relate to FOMO a lot. It's hard have to constantly weigh up decisions on doing stuff plus the pros and cons is such a pain in the arse, the lack of freedom is so disheartening. We need to be kind with ourselves. Praise ourselves when we do those little achievements.
Thanks for making this! It's really encouraging to me as someone who has a chronic illness and I really have to remind myself that it's ok to not be able to do something. My issues are really related to cold, and with fall and winter coming on, its tricky but its good to see creators being encouraging! Thx!!!
I relate to much of this, the frustration of having to be super mindful with one’s limited amount of energy gets to me a lot. I’ve recently started experiencing my legs not working properly when I’m fatigued, and it’s been kind of scary, since this hasn’t happened to me before. I feel like my symptoms are getting worse with me getting older, even though I am getting better at managing them, and it’s super frustrating to be putting in all this effort and still be deteriorating. Sending love! 🤍
I can relate so much! Especially the "I can't do all the adult things" I am so frustrated atm because things finally got better, but then (EVERYTIME!) some of the other symptoms are getting worse or some new health shit is happening. I'm so sick of this roller-coaster... And I can't bare to see all the adult things other people are doing... It so frustrating Sending you big hugs❤
Which of adult things you want the most? ;) After big trauma when I had to spend 3 mo in bed I opened whisky for myself as not so bad painkiller 😅 Jokes aside, I found some way to enjoy other things, I started learning more about perfume world, I played so many hours in the darkest dungeon. And even social life was kinda ok, but as also a chronic patient I wasn't super surprised when people's desire to help disappeared and I was left back with the closest. Heck, I even found love just before getting another surgery. We are not together anymore but it was a good illustration for me then that I may not be losing out on life even when so limited. If we compare, I am better from health pow now but love is gone, worries about w.a.r in my country are here, lots of limitations give me harder time than I used to have earlier. I see your struggle and you are not alone💚
you are SO strong Zara! i get it also im in a flare up too with my own chronic illness and my OCD has been a big factor and i can hardly do a thing without a intrusive thought or a compulsion, i really get it!
I’m currently laying on the couch going from freezing cold to hot and back again. Being unable to do a simple task like walking my dogs is painful, but I know I’ll be better soon if I just let myself rest and eat well. I hope you are able to adjust to new a treatment plan and gain some more independence soon❤
Thank you for making this video ❤ I do also have FND and strugle with lots of the things you mention in this video. I am sad you struggle, and at the same time happy to know that none of us are alone. I feel supported by seeing your videos. Both the highlights that gives me hope and a feeling of that it is ok to have fun and laugh also when I am sick. And this content makes me know that I am not alone when I have "minus days". Thank you Zara. Your work really means a lot to me! ❤
You are so intelligent and lovely, Zara! You painted a verbal portrait here that is bound to help those of us in your community that have chronic health conditions! And, you're teaching those without disabilities to have compassion. I'm old enough to be your Grandma, and your "got stuck on the living room floor" story described me this week!! It was not fun for sure! But you are brave and determined to appreciate when you do have a few moments in the fresh air outdoors. Your sunset photos in another post were beautiful! Your presence on TH-cam is a real source of friendship for so many who are also coping with very harsh disabilities! Take good care of you! Sending prayers and hope for good information from your doctors! Your orange cat is pretty. I have a black cat who is great company. He's patient when I don't have the strength to play hide and seek around the house. I have to find someone to help me get him to the Vet for his yearly checkup. You're a very good speaker and enlightening person. Always stay beautiful! Kind regards! 🩷✨🙏🕊️
Thanks for being honest. It’s so valuable to hear. I hope I can learn to understand a little better how people with chronic illness feel and the different challenges they face.
I'm dipping into what feels like what will be another one of my lowest lows both mentally and physically, so thank you for posting this. I see you too, and everyone else that is struggling. We are a strong community, and even if it's because you have to be you are resilient. Sending hugs and sparkles to all that need them too (and extra for anyone who already got sparkles on the discord lol) 🫂✨🫂✨
So relateable hun, in 2018 after i graduated high school i got a bunch of symptoms that docs dismissed and didnt get diagnosed with a chronic illness till 2021 because my disorder isnt well known. My diagnosis is functional neurological disorder or non epileptic seizures mine are caused by CPTSD/childhood trauma an abuse💜
Hello Zara! I love your videos, they're extremely extremely helpful!! I hope you start to feel better soon, and I'm sorry you aren't feeling well! Keep up the great work on your videos when you can!!❤
I’ve been watching you for some time but never commented before, but today I just wanted to say that I understand what you’re going through. I have so many chronic illnesses, some diagnosed, some I’m fighting to get diagnosed. I’m waaaaay older than you but I’ve been through all the same emotions. You’re definitely not alone. Please don’t feel pressured to upload content, wait for a day when you feel you can manage it. Much love ❤
the thing is with disabilities its important to not push yourself too much and to break things down into smaller tasks and activities in order to not overwelm the body and mind. regardless there are thing we can or cannot do but thats okay all we can do is live life and be mindful of how our disabilities impact us so we dont end up hurting ourselves
I'm glad to see I'm not alone in this struggle. I've been chronically tired my whole life, but this past year, my health has deteriorated. I've done lots of tests over the years but none of the doctors have figured it out. Nowadays, I only get up to use the restroom, and when I'm well enough, go downstairs to get food. I hope that you can start feeling better soon! Take as much time as you need!
This is the video that made me subscribe to your channel. Thank you for putting all this into words for those of us who related but feel so hidden. What you are doing is so important.
Zara, gracias por tu esfuerzo y tus videos realmente me reconfortan y me siento identificada, créeme aveces el simple.hecho de bañarse y cambiarse es agotador, por lo que te admiro y reconozco tu esfuerzo por salir adelante en tu día, te mando mucho cariño , eres fuerte y gracias por dar a conocer ese lado de las enfermedades crónicas del que poco se habla ❤❤❤❤
Hi hope you feel better soon take a break you deserve it a lot please take care of yourself instead of feeling bad that you don’t have content for us please put yourself first you deserve it. Life isn’t always highlights and that’s natural. Please take care of yourself before thinking of us❤️
I recently or not recently, but I got operated and I have really intense nerve pain in my feet. I’m always disabled but this is much worse. I can’t go out and get my normal social life, and do the same things I used to do and then I become drained because of it so you are not alone I pray that you feel better soon❤
@@wheelchair_gamer786 My heart goes out to you! I don't deal with nerve pain personally, but I've understood it can be very difficult to handle. I hope you get some new medication/treatment that can lessen it, or at least that you learn ways to cope with it. When I'm suffering I try to be extra kind to myself, to counter the negative experience. Drinking hot chocolate, sitting with a blanket in the sofa and watching my favourite tv-show doesn't solve any problems, but it helps me cope with them and refill my energy. Hugs!
I'm 50. Disabled female. You said exactly how I've felt and what I've been going through over and over and over. It's a cycle I'm kinda used to. I highly enjoy life while I'm the active part of my cycle. I dread the down sides of my cycles. But it's the same, for me, over and over, no matter how much I live or don't live during any part of my cycles. So I've decided that I'm just going to overdo it when I can and rest when I need to. Just enjoy what you can when you can. The pain will come. So. Live life. Then be on with not living life.
I'm so sorry that you are struggling rn. I can't say that i can understand everything you're going through, but I can understand a little. I am always going to be here rooting for you and you have all my support as one person with a chronic illness to another like you said it fluctuates so this will get better and we will be here for you. BTW you have said all the things that I have wanted to say for years.
I watch your videos and I'm amazed. I watched this one and and the second you said "I see you" I had to stop and I started balling. No one has ever said that to me. That and the following bit you said. But.... "I see you". I'm having a terrible day symptom wise and for sometimes (we don't know why) I have been waking up every day for the last week or so dizzy, unable to walk and barely able to see. So thank you.
Thank you so much for this! I hope you’re feeling a little better now. you’re such an inspiration to so many people and you’ve helped me feel so much less alone!❤️
Yes, exactly!! I relate so much! Thank you for sharing your experience! I hope you can get to a point where things arent as rough as they are now and be able to do more things that are fun for you. I wish you the best :)
This video was really, really helpful for me. I came to your channel to help me feel more normal and then felt honestly very sad and innadequate with all the travel videos etc. And your great wheelchair (waiting to be fitted finally) and then I opened this video... THIS helps me feel more normal, and okay. That I' not doing something wrong by being in a flare up rn. I don't usually leave comments like this but I love your content and it's really helped me accept my own similar disabilities... and I just wanted to let you know my experience. Thank you
I’m really enjoying your channel and all the variety of content. Taking time and baby steps have helped me keep myself well. I still have flare ups and mental health issues but I’m finding that if I catch myself before I crash I recover quicker. It works for me most of the time and allows me to get stuff done and also take breaks and rest days between bigger tasks and days away from home. Life is tiring but fun, though at times more difficult than I could say here. It’s lovely to have another person who understands ❤
i just want to thank you deeply for this video, as teen that struggles with chronic illness and is currently going through the exact same thing, it is nice to know that I'm not alone or that I'm not the only one that sometimes can't get out of bed or even take a shower. i have been very depressed and frustrated lately as i have too been in a flare up for weeks and it seems that no matter what i do I'm not getting better. i totally understand what your thinking and feeling!
Omg I can’t believe I’m this early!! ❤️ Thank you for this video Zara, it is very important to show the realities of living with something like this and you are so brave to share this, many people relate to it thank you xx
I have very similar symptoms to you.. relate so much to this video. Had to spend all summer from my window, i live in a flat.. and all i want is to go outside and see the trees and sun. Wishing you good happy moments in the future.. atleast we are not alone in our struggles.
You are amazing, point blank!! ❤ Please look after yourself! You are so gentle, wise, smart, funny, kind, brave and strong! I admire your strength and love the videos you make! Please don't be hard on yourself, and know this..... The world would be a very dark and miserable place without you in it! 🥰❤👍
Hey sweet Zara👋 Thanks for the update, it's nice seeing your face again (of course when you can)😇 I just want to say; even know, i don't have a chronic illness, i can relate and understand to a lot to what you have said. I'm autistic, and for me a part of that is, i'm an overthinker. Sometimes it's so bad that i can cry or have a migraine attack. These things are common in my family. Sometimes, doing little things can be the best for you in that moment. Often the only person who can calm me down, is my mom. Just with saying simple things.🥰 Sending you lots of love, hope you feel better soon. RESPECT!💝💞
Sending good vibes your way. I don’t have a chronic illness but I do have chronic pain and chronic fatigue from a car crash from almost a year ago. Along with other symptoms but those two debilitate me most frequently. I relate to your want to simply go outside and walk around your neighborhood. These simple things just aren’t simple anymore. Adjusting to the new you is a very difficult thing to do. I am currently trying to adjust to who I am not versus who I was before my accident and although who I am isn’t really different, my brain has chemically changed and I have a perspective on life that is drastically different from me before that day. Something that has helped me on days where I don’t feel like I can stay home any longer but I am forced to is doing things that pass time. One night I spent 2 hours sorting my Pokémon cards because I just needed to wait it out until my husband was home. But honestly putting your health at a priority is so important and it is a good thing even if you have to miss out on opportunities. It really stinks but you are doing the right thing. Hoping for peaceful days to come your way.
Hey, I just wanted to let you know that you really have helped me come to terms with my disabilities and feel confident in trying to access tools to help me have energy and function. I’m still trying to figure out what exactly is going wrong in what way, I technically know how all my issues started but because of the rarity of survival after birth of the cause, there isn’t enough research to prove anything. This has made it super hard to get doctors to understand the extent of my problems and I’m always told that I’m too young to deal with everything that I do, so I’ve doubted in the past whether or not I should push for and use mobility aids. Things took a sudden decline recently, so I finally got my first cane. Your channel and one other got me to the place of acceptance of needling one, and it’s been life-changing. I had no idea how much energy I was spending on balance and walking. Plus, thanks to both channels, I learned that mobility aids can still look good while providing a key function. I have an adorable pink cane now, have a lot of freedom I didn’t have before, and I am overall doing better mentally than I initially expected as a direct result of you. Thank you ❤
9:45 so proud of you for going against this. truly. I dislike hustle culture soooo much ahah every fiber of my being has fought against that since forever :')
Currently in a bust state after a fun weekend and it's been what feels like punishment for two weeks now. It feels so lonely but then you are suddenly voicing my feelings so articulately!! I'm sorry you feel so bad. Thank you though for sharing... ❤
I'm feeling you so much rn Zara, Rest you deserve a break, you don't owe anyone anything X your content is so calming, it helps me out of tic attacks, So give yourself what you deserve !! Thank you so much, Gracie
Thank you. Thank you for sharing the truth. Thank you for sharing how difficult everyday things can be. I wish that this could be required viewing. Take care of yourself. We appreciate you.❤️🔥❤️🔥❤️🔥
i just read “5 feet apart” too! it’s such a good book and the movie is amazing. you should read “sick kids in love” if you like this genre of disability/chronic illness romances
Just know that i am here for you and i will always be here to support you. Thank you for talking about your chronic illness and being vulnerable and for being here so active making a safe space for people. I love you. I am sorry about the hard days with chronic illness. I am here. You can contact me if you want to and we can be friends and i wanna here about everything ❤❤❤❤❤❤😊😊 I wish i could do ur responsabilities for you so you could relax and recover from burnout
PSSS I SO relate to that crap negative cycle of the feelings of things going ick, and then mental health kinda declining along with physical struggles. Oy, I relate too much. We will get through this queen. You are SO strong and I love you.
If you guys can afford a few devices like alexa's, you can use them verbally to send out a broadcast to all speakers. Then you can ask for help or let folks know something is going on. Mine are even attached to my mum's at her house so i can contact her without even having my phone available
Thank you Zara I'm in a really awful flare along with school and I really needed a reminder that I'm not alone in feeling the way I do. Take care of yourself ❤️
AuDHD here. Agree on this that it's sooo hard to keep up with daily life while having disabilities. I try to keep a positive mind weeks before my birthday but I gone into burnout out state which unfortunately lead to a deep depression. It's a hard road to achieve my goals. But while watching this, I'm glad that I'm not the only one thinking about it and I'll try to keep my best and not stopping. Wishing you the best and hope you keep going Zara! Thank you. ❤
Thank you for sharing that, Zara! ❤ It is SO refreshing to hear other's experiences that helps me realize I am not alone, and someone else actually GETS it!! Like you, I have a multitude of "issues" that affect me differently day by day, sometimes hour by hour, and it is frustrating. Watching and listening to you is encouraging and empowering to me! Thank you and God bless you, Zara!! ❤
I don't know what it's like to be you, but please don't overwork yourself, post content whenever it's possible for you, you're so much stronger than you realize, I hope life gets way much better for you for as long as possible and thank you so much for sharing your experiences, have an amazing day❤
I took almost 2 weeks off from.filming due to bed bound ....only just came back ..... take as long as your body needs lovely ..... try and pace but sometimes we push ourselves when our bodies can't..... one sub asked me to film every day after I explained I can't.....even going out is exhausting ...... you come first hun ... take as much time as you need ❤
Thank you for sharing 💗 recently I’ve been opening up to my friends more about my health issues and how I’ve been realizing they aren’t normal. I hadn’t been well since I moved back to college, only gotten better this past week. It’s always strange for me coming back from being sick for so long (this time it was a month) because I struggle with the transition back to working at my normal pace again (idk if this is related to being autistic or potentially ADHD but it’s some kind of neurodivergent executive dysfunction struggle). And my normal pace is slower too. And I was so frustrated so many times while sick. I was struggling with my physical and mental health. But I finally reached out for help this time 🌱 Zara you’re gonna figure this out 🌱 go at the pace you need to go. You got this 💪🏼 From the edit it looks like things are looking up again for you; that’s so great :D I hope things continue to improve!
I love you and your videos. School started and i feel so bad too. My history teacher is killing me and im ticcing so much. So i know its hard and what i feeling is not what you feeling but i hope you will be okay❤ I belive that one day you will be well enough to travelling and see the world, you are so strong❤❤
Thank you so much for telling us we really appreciate it and it’s ok to not be ok it’s ok to take a break and I know that I’m not you but I hope this helps ♥️
Everything you're talking about in this video are things I've felt and experienced. Right now, I'm doing quite well. For me therapy, family support, and God, the good ol' G O D, have me feeling so much more content and at peace. There are ups and downs, but for me, honestly, my relationship with Jesus is what keeps me going on the good days and the bad days and everything in between. Thanks for sharing Zara, you're video's are very comforting when it feels lonely. You're videos helped me realise I had FND
I’m going through the same thing…. My chronic illness finally got better and now I’m back to where I started. Everyone I know graduated last school year and is continuing school now it started again and I’m left at home, unable to go to school. It’s really lonely knowing I know no one going through the same thing and this is a video I really needed right about now, thank you and I wish you well
@@stellaancimer8505 it feals like migraine either sore or pounding in the body I now no I have heds do you? Autism add after 27 years CFS fybromyalgia chronic migraine diagnosis I have no migraine pain in head now all upperbody it's all the autism must be what are you diagnosed with nice to help one another
@@stellaancimer8505 how long have you had it unsure if I have Lyme but grew up making hay and my mum past last year from severe ms obvously autism heds to where in UK are you going I went to London for heds diagnosis
Nice to see you back I have chronic pain and cerebral palsy because I have scars from scoliosis I wish people knew to keep inviting me to everything just breathe through it and stop internally punching yourself I get it love sinead ps I have a PhD in independent living so I feel like your describing my life
Yep, I empathize...and I haven't the energy to further articulate that. Incidentally it occurred to me the other day that it might be worth investing in a drone for the days I just can't get outside. Curious to know whether anyone else has put them to this particular use as it seems like it could be therapeutic.
You are so strong and beautiful! 💕❤️ I’ve been not feeling well lately so I can relate. I’ve been having stomach issues I’m not sure why. I wish I could hug you and comfort you because I’ve been there before I’ve been struggling currently with autism spectrum disorder. I am currently not feeling too well I think it may be the spectrum disorder. I hope you get better soon you are incredibly strong and beautiful! 💕❤️😊 I will definitely be praying for you stay strong beautiful! ❤️💕😊
As someone with moderate ME and Fibromyalgia (full body pain), I relate to this SO HARD. I'm stuck on the sofa/inside like 95% of the time and wow, people have no idea how boring it is! The worst days are when you're mentally incapacitated as well, meaning you cant even enjoy a film or a book! I've just had a major flare up myself (after pushing myself on holiday) and my pain levels have been horrendous for a few weeks now. It really sucks. Thankfully though, I've been ill for about 5 years now so I'm (normally) able to manage my mental health ok. I figure that its not worth distressing myself over what I can't control and focus on the small moments of joy. Thats tougher some days than others but its much easier to handle things when you dont have your mind working against you too. I hope things get easier for you soon and you can find some small joys to keep you going. Hang in there!
It's frustrating and there is a grieving process, but we either adapt and change routines look after ourselves or we get even more ill. Life doesn't look like it did before and that's ok,it's just different. I'm living with many c illnesses and hubby has stage 4cancer...there's still joy. We are more than our diagnosis
life can be a real slog just playing on normal mode zara beth. additional challenges only up the difficulty level and you are at least on very hard (probably more like hardcore+) im sure you have a lot of peoples respect for your attitude and resilience. i know you have mine.
Hi I have been diagnosed with epilepsy, it's not the same condition also I admire you because you do something that many people don't do you are sharing your experience and that is very helpful to other people that can feel that they are not alone including me, having a chronic disease is really really hard, where I live that it's Mexico the doctors and many people doesn't understand that we don't ask for this. it's cool to see how we suport each other, some people really need to see that we are not alone we have many people that share the same diagnosis or even if it isn't the same they feel very similar and That's kind of nice because you can feel empathy and they can empathize with you in certain ways that many people don't do and I'm not saying normal people because many normal people don't judge but many other people they do and it's quiet difficult to not get drowned in all that words of people that don't understand and even with that they are trying to help in the way that they know but they don't understand. I'm glad to find your channel I liked it, I don't know your attitude about it it's very nice to see it, at least for me it makes a big difference because sometimes you can't meet people like you or like me and it makes you feel a little bit alone and I'm sorry my friends if you read thiz I love you, it's just that talk about some stuff that they don't understand it's kind of nice or... In Spanish we say "te quita un peso de encima" I think in English will be something like "it makes you feel less heavy" 😅 Since I was diagnosed with this I lost people that I really care about and I love, and I feel very sad about it. I'm still having health issues sometimes for the medicines from other times it's just me and the way that my body works and some other times it gets worst so it's really like a roller coaster 🎢 and for me it's not a good one. I know that I will live with epilepsy All my life, at the beginning was very depressing, and sometimes it's still feeling like that because many stuff that I used to do I can't do it, I miss so much being in the School I used to study physics and I have to left my career because de epilepsia affect really bad at my brain in that time where I didn't have treatment or even I haven't been diagnosted. Some days I look the other way where now I know what I have I know how to fight and where to fight it and also I know which fights I can't win. Like you said it takes many energy from us and I really feel very frustrated because I like to go out and take coffee with girls and Friends now I'm mostly in my home I sometimes make plans with friends and they get upset because I had to cancel and that makes me feel like an awful person😢 and I know that my friends get a little hurt 🤕 that makes me feel really bad. I just want to be like a few years ago going out to hang out with friends or even do simple things like go to the school go to the library and study something that I really like which is physics. Even in video games I don't play so nice and it's frustrating because I used to play not so well but not so bad. Makes me feel like my body don't response too well in the I don't like it, I liked protect people now I can't protect myself. I will still going with the treatment, I will do the stuff that I have to do to carry my brain and I know that I have to let go that part of my life 🧬 And adapt to what I am now a human that deserves love. Thank you really so much for making this video. ❤ I'm sorry for telling my history
Thank you for sharing this. I am in the middle of a flare up and my period just started. I want to go home and rest and get better. But I'm scared of my boss getting upset at me.
Comparison is the thief of joy. It is one of the hardest lessons I have learned in life. I have now accepted that my life will not look like many others in my social group, and that is just OK. I don’t have to like it, but I have learned to accept it…most days
i recetly listened to the imp and skizz podcast about comparison is the thief of joy and it taught me a lot including what you said, everyones different and that can be hard to accept sometimes
Someone in my discord said for chronic illness it's not FOMO, it's GOMO, or grieving missing out. We have an immense grief for the life we had before/can't have.
😢
This is so true. As the pieces that made you the person you are get slowly stripped away, it’s hard to not grieve the life you had. I used to hike 20+ miles through rough terrain. Now I struggle to get to the toilet. That’s a hard pill to swallow, especially at 35.
@@GoblinModeMVP
Man that's one of the most relatable sentences I've read in a bit. I'm only 21 and am also there frequently.
@@emilydowden9038 I’m so sorry to hear you relate at such a young age. Take time for yourself, treat yourself well. Never apologize for needing help. You don’t have to apologize for existing. I’ve made that mistake and will never do it again. Never apologize, your illness is not your fault 🙏🏻
@@GoblinModeMVP Thanks, really good to hear someone say it. I know it isn't my fault, but I'm so often mis treated for my needs and things. I was literally apologizing this morning because my partner was running late for work because we woke up late and we planned on getting donuts because I just moved back in with him and we were celebrating me leaving my last bad living situation, and even though he set the alarms and he woke up late and he wasn't upset with me, I found myself apologizing and he said for what and I said for existing, and needing things. I feel so bad asking for or needing anything, I find myself saying for existing too frequently while saying I'm sorry. I was recently, well i say recently, time flies fast, but back in April I was fired illegally due to discrimination about my disabilities, despite having already mentioned everything and done anything I needed to do to be properly accommodated, and not even asking for any real accomodations outside of being able to use the restroom without being judged and as needed, and sit down in between tasks, like, I would be standing and doing nothing, can I sit and do nothing, and I would always get up when asked no problem no complaints. I always have to spend between 10-30 minutes in the restroom, but sometimes it's way longer, but I try to keep the struggle at home, even this morning I think I've been in here 2 and a half hours now. At work I never ever spent more than 50 minutes a few times, but I always tried to keep it between 10-25, and I would only go once in a 6-10 hour period, making my own issues worse for myself at my home, to try and accommodate them, my other coworkers or higher ups, when realistically if I wasn't being given my mandatory lunch break of 15 minutes, which I never got, and 2 to 3, 5 minute restroom breaks as most able bodied people get to have in a 6-10 hour working shift, if all that is put together in one restroom break I should be allowed to take my 30 minutes to actually empty my blatter enough to function at my job, without being forced to clock out and lose more hours I didn't have money to lose, instead of being forced to damage myself further so they can use me longer and pay me less and not give me the hours I need to support myself and my family. And yet despite accommodating the establishments needs, I was still asked such a blatantly discriminatory and disrespectful rhetorical question of "what are you doing in the restroom thats taking you so long" and when i answered it anyway, even though it was obviously just a rude remark either to make me feel guilty for taking so long, or to insinuate that I was BSing rather than actually using the restroom, but i still answered calmly and properly and then sent screenshots to my manager sharing the information regarding some of the symptoms of my disabilities that were making me take so long, she ghosted me and started cutting my hours even worse not even half a week later, lied to me about the reason, and when I tried to speak up about it I was ignored further, until they were cut so drastically past living wages that I had to speak up yet again, wasn't listened to, had my job threatened, then went to higher ups for help, I just wanted hours to live and feed myself/ loved ones, but then was fired by them for "no reason" in the middle of a discrimination claim, after working there with no problems for 2 years, less than 2 weeks after speaking up the second time about my mis treatment. There was much more, but that's the gist of it, and it just, makes me feel really like I am in trouble for existing when nobody believes you if you don't look disabled, and then they judge you when you do look disabled because you must be faking it if sometimes you have good days and sometimes you have bad days, and they don't want to take the time to learn or listen why. When you lose out on opportunities for fun or growth and achievement, when you're always excluded where you could function and force included when you can't to try and watch you still barely manage so they can say they exposed you for lying when you aren't because you barely managed to do something you can't do or shouldn't do because you can't lose your income either. Sometimes my issues are in remission, and since I have invisible disabilities (not really invisible if you actually looked or read into them, but people dont want to do their own research, would prefer to accuse you of lying instead) but because sometimes I look okish, I'm expecting to always be the same when I'm at my worst as I am when at my best. It can be so hard sometimes to feel like I am not wrong simply for existing when everyone tells you that you are doing things wrong when your just doing what you have to do to live or even use the restroom and work properly afterwards. Anyway, geez, I always talk so much when typing anything, just words come out faster in person so it feels like less but feels like an essay when you have to read it. Thank you for taking the time to leave me a reply, sorry about my long reply. Thank you for expressing that it isn't my fault and I'm not wrong for existing, without me even mentioning that I feel that way. You must understand very well the judgement that comes with life struggles and or disabilities if that was immediately your response to me, so always remember the same applies to you. I bet you are really kind and deserving of proper treatment (not that anyone should be mis treated 😂) but I hope you get what you deserve and I hope you are able to become healthier again over time and not have to worry about what's eating away at your life energy any longer than necessary. I long to hike, and I wish to run into you hiking along the same path one day, able to enjoy the weather and the view and the exercise without pain, fear, judgement, or general handicaps taking from your experience. Idk what your lifestyle looks like, but even if you don't have bad life style habits, adding better ones to your plate might help some of your issues, like taking out ultra processed foods and eating organic home made meals along with even minimal daily exercise or activity, both physically and congestive activities, is such a big step towards better health, I know that's what I've been doing and it has been helping and is about to be so much more helpful and better now that I've changed my environment. It's not a cure or fix all but it's a start to better health, and you really never know where that start might finish, miracles, crazy healing of the body, does happen, sometimes people come back from deaths door new and fresh and capable, especially at our ages. Your body has the best doctor in it, your immune system, so if it can be allowed to properly do it's work, people can recover from nearly anything. Our bodies were created self sufficient and self healing after all, a masterpiece, a work of art, so I pray that you regain your strength, health, youth, and can travel again freely to experience all the joy and beauty you once were able to travel with. Thank you for sharing your words with me, and again, sorry for the long read on this end, but I hope at least it isn't a bother or too disruptive to your time and day if you do get to read it. Thanks again, and I hope you have a good day 😊 also ps lol by the end of this its been another hour and a half of struggle, so about four hours now trying to pody, and it's not because I was typing, i don't usually spend time on or even really look at my phone while in here, and it takes just as long then, but just was responding to comment replies and figured if I'm gonna be stuck on the toilet for hours might as well do the other multiple hours activity, at least that's how long it takes when you type like I do, better kill two birds with one stone, but again it really would have only been a five minute rant if I didn't have to type it and then edit and spell check because there is auto correct which almost always auto spits out the wrong words 😂 but anyway again, have a great day, and thanks for your time. And good luck with life and your struggles and goals 🙏✌️
Not many people actually understand this! I can try to explain my chronic pain and illnesses but no one really gets it unless they go through it, it’s always rough :( but im glad to have found this channel and other people going through this
"Normal" healthy people don't understand. Which makes us not only suffering from out disabilities, but also misunderstood and sometimes gaslighted. I hate that I can't make people understand my experience, and that they always think I can do more than I'm actually capable of.
@@SamirCCat us vs them world is not fun. There are plenty of "normal" healthy people that do understand. There are also a lot of idiots in the world. That's it.
@@musical.theory
Aqui no Brasil,
O povo respeita muito, é amigável e compreensível.
A questão é, que é algo que muitas pessoas não conhece, por incrível que pareça.
Zara, TAKE YOUR TIME!!! We love your videos, but the one thing we love more is you being healthy and comfortable! Take a month off, hell take a year off, as long as you are ok we are happy.
@@Adairaaa ❤️🫰♥️
I push myself back a lot and tell myself that I’m not “ill enough” or “disabled enough” to use a mobility aid or complain about the pain I’m in and it’s really hard to just tell myself that it’s ok to be disabled or chronically ill, I’ve just come back from a short holiday and I’m already going into a flair up 😓 it’s really physically and mentally challenging just existing now, but I’ll get through it and I hope the person reading this knows that it’s ok to not be ok
Not being ok is not a state you choose to be in, so yes, it's ok not to be ok. No one chooses to have a disability of some sort.
I myself am not disabled, but I find no reason to belittle or judge people who are so. I wish you the best in everything you manage to do, and not do.
I might not be able to relate to what you are going through, but I can still respect those difficulties and empathize. So rest up and don't blame yourself for your physical condition and limitations🙂
I hear you. I'm physically disabled, but I often feel I'm "not valid enough" because I can walk. There was time when I was paralysed, but it passed. Other things stay. It's not only about walking or not walking.
❤🫰♥️ I feel that to the Core 😮😢💯❣️
As someone with severe me/cfs please take care of yourself, your health is so important❤
Oof. I get an average of six hours per day of freedom before my dystonia forces me back to bed. It's split in three periods, but still. Respect.
Having people like you and the folks in the comments really help me remember that I'm not alone
Ik I don't have it as bad as a lot of people but it still hurts that I can't do everything others can do
I have a slipped disc for the past 4 years which restricts me from sitting down and as a student still it's something i cant avoid
I feel so much pain and pain killers don't do much
My condition shouldn't have lasted for so long and we're not sure what's wrong
The FOMO is also very real
I can't join any clubs I go home right after school and just lay on my bed for hours
I feel like my teenage years have been wasted (I turned 17 this year) so from 13 years old I've been stuck like this
Everyone is so strong for getting through life despite their own health and psychological issues
Love yall
☹️ 🤗 ❤
❤
Idk if it's consolation but teenager season of life is not the best for maaaany people anyway 😅 I am 31 and I like the maturity, independence and options I created for myself and which were absolutely not accessible for me before 25-ish.
But I see you and your struggle. I understand and share these feelings and it's freaking unfair that we can't do things we want.
I've definitely been having one of those weeks full of disability grief and frustration! What helps me most during those times is finding comfort in the disability community sharing things like this, so thank you
It helps me so much too!! My disabilities are mostly chronic mental ones, but I relate to every single word Zara said. Do you know any place online with disabled people that share and support each other? I only find bad sites where people are mean (triggering my moodswings) or it's inactive for week at a time. Do you have any online forum or other place that you recommend?
I'm very lonely, but too tired and fragile to socialise more IRL.
I love your videos and the representation you share! Your openness to your FND allowed me to know a good clearance of info on it, recently a classmate got diagnosed with it and funnily enough I am the one who told her things about her own disability. Thank you ❤️❤️❤️❤️❤️❤️
You're helping so many people by sharing these videos. I love you and your content
You are so right that holding ourselves back gives us independence. That’s something I’ve been learning recently. Thank you for sharing and reminding me I’m not alone!
Yes! I spent the entirety of last week not doing much outside of school except for homework because I went to a concert on Friday, so I needed the energy to be able to be independent. It was also homecoming week last week, so I had to skip out on a lot of homecoming events to save energy for the concert and for the dance (that required a little less independence because I had my friends with me) ❤😊
Sending you hugs, it is such a rollercoaster. Pacing is such a tough thing to continually do, nobody with chronic illness will ever be 'perfect' in pacing themselves.
I relate to FOMO a lot. It's hard have to constantly weigh up decisions on doing stuff plus the pros and cons is such a pain in the arse, the lack of freedom is so disheartening. We need to be kind with ourselves. Praise ourselves when we do those little achievements.
"It is just shit." LoL, I feel you, and also I'm sorry. You are amazing, and I I love you.
2:03 oh my god i feel this so much. It's so cathartic hearing it put into words.
Thanks for making this! It's really encouraging to me as someone who has a chronic illness and I really have to remind myself that it's ok to not be able to do something. My issues are really related to cold, and with fall and winter coming on, its tricky but its good to see creators being encouraging! Thx!!!
I relate to much of this, the frustration of having to be super mindful with one’s limited amount of energy gets to me a lot. I’ve recently started experiencing my legs not working properly when I’m fatigued, and it’s been kind of scary, since this hasn’t happened to me before. I feel like my symptoms are getting worse with me getting older, even though I am getting better at managing them, and it’s super frustrating to be putting in all this effort and still be deteriorating. Sending love! 🤍
I can relate so much! Especially the "I can't do all the adult things"
I am so frustrated atm because things finally got better, but then (EVERYTIME!) some of the other symptoms are
getting worse or some new health shit is happening.
I'm so sick of this roller-coaster...
And I can't bare to see all the adult things other people are doing...
It so frustrating
Sending you big hugs❤
Which of adult things you want the most? ;)
After big trauma when I had to spend 3 mo in bed I opened whisky for myself as not so bad painkiller 😅 Jokes aside, I found some way to enjoy other things, I started learning more about perfume world, I played so many hours in the darkest dungeon. And even social life was kinda ok, but as also a chronic patient I wasn't super surprised when people's desire to help disappeared and I was left back with the closest. Heck, I even found love just before getting another surgery. We are not together anymore but it was a good illustration for me then that I may not be losing out on life even when so limited. If we compare, I am better from health pow now but love is gone, worries about w.a.r in my country are here, lots of limitations give me harder time than I used to have earlier. I see your struggle and you are not alone💚
you are SO strong Zara! i get it also im in a flare up too with my own chronic illness and my OCD has been a big factor and i can hardly do a thing without a intrusive thought or a compulsion, i really get it!
Seams the OCD autism causes the chronic illness ime sure
I’m currently laying on the couch going from freezing cold to hot and back again. Being unable to do a simple task like walking my dogs is painful, but I know I’ll be better soon if I just let myself rest and eat well. I hope you are able to adjust to new a treatment plan and gain some more independence soon❤
Thank you for making this video ❤ I do also have FND and strugle with lots of the things you mention in this video. I am sad you struggle, and at the same time happy to know that none of us are alone. I feel supported by seeing your videos. Both the highlights that gives me hope and a feeling of that it is ok to have fun and laugh also when I am sick. And this content makes me know that I am not alone when I have "minus days". Thank you Zara. Your work really means a lot to me! ❤
You are so intelligent and lovely, Zara! You painted a verbal portrait here that is bound to help those of us in your community that have chronic health conditions! And, you're teaching those without disabilities to have compassion. I'm old enough to be your Grandma, and your "got stuck on the living room floor" story described me this week!! It was not fun for sure! But you are brave and determined to appreciate when you do have a few moments in the fresh air outdoors. Your sunset photos in another post were beautiful! Your presence on TH-cam is a real source of friendship for so many who are also coping with very harsh disabilities! Take good care of you! Sending prayers and hope for good information from your doctors! Your orange cat is pretty. I have a black cat who is great company. He's patient when I don't have the strength to play hide and seek around the house. I have to find someone to help me get him to the Vet for his yearly checkup. You're a very good speaker and enlightening person. Always stay beautiful! Kind regards! 🩷✨🙏🕊️
Thanks for being honest. It’s so valuable to hear. I hope I can learn to understand a little better how people with chronic illness feel and the different challenges they face.
I'm dipping into what feels like what will be another one of my lowest lows both mentally and physically, so thank you for posting this. I see you too, and everyone else that is struggling. We are a strong community, and even if it's because you have to be you are resilient. Sending hugs and sparkles to all that need them too (and extra for anyone who already got sparkles on the discord lol) 🫂✨🫂✨
You give hope and comfort to so many by your example. You are strong. May you rise to every challenge life throws at you, and win.
hope your ok
So relateable hun, in 2018 after i graduated high school i got a bunch of symptoms that docs dismissed and didnt get diagnosed with a chronic illness till 2021 because my disorder isnt well known. My diagnosis is functional neurological disorder or non epileptic seizures mine are caused by CPTSD/childhood trauma an abuse💜
Hello Zara! I love your videos, they're extremely extremely helpful!! I hope you start to feel better soon, and I'm sorry you aren't feeling well! Keep up the great work on your videos when you can!!❤
100% agree, love you Zara 💖
Thank you for this message, Zara. You are an inspirational person.
I’ve been watching you for some time but never commented before, but today I just wanted to say that I understand what you’re going through. I have so many chronic illnesses, some diagnosed, some I’m fighting to get diagnosed. I’m waaaaay older than you but I’ve been through all the same emotions. You’re definitely not alone. Please don’t feel pressured to upload content, wait for a day when you feel you can manage it. Much love ❤
Me Too 😮😢 Exactly ♥️🫰♥️
Rest and take time off I hope you feel better then you have been much love ❤
💖flares are aweful when there's no end in sight. Your positivity is inspiring 💖
the thing is with disabilities its important to not push yourself too much and to break things down into smaller tasks and activities in order to not overwelm the body and mind. regardless there are thing we can or cannot do but thats okay all we can do is live life and be mindful of how our disabilities impact us so we dont end up hurting ourselves
♥️🫰♥️
I'm glad to see I'm not alone in this struggle. I've been chronically tired my whole life, but this past year, my health has deteriorated. I've done lots of tests over the years but none of the doctors have figured it out. Nowadays, I only get up to use the restroom, and when I'm well enough, go downstairs to get food. I hope that you can start feeling better soon! Take as much time as you need!
Sending you love and spoons ... Lots and lots of spoons. You are such a beautiful human being.
I’m in a flare up right now too and trying to find a balance of not pushing myself but feeling like i have a life.
What do you have?
This is the video that made me subscribe to your channel. Thank you for putting all this into words for those of us who related but feel so hidden. What you are doing is so important.
we will always be with you and support you dw when you feel down just remember there are loads of people who believe in you and support you :)
Zara, gracias por tu esfuerzo y tus videos realmente me reconfortan y me siento identificada, créeme aveces el simple.hecho de bañarse y cambiarse es agotador, por lo que te admiro y reconozco tu esfuerzo por salir adelante en tu día, te mando mucho cariño , eres fuerte y gracias por dar a conocer ese lado de las enfermedades crónicas del que poco se habla ❤❤❤❤
Hi hope you feel better soon take a break you deserve it a lot please take care of yourself instead of feeling bad that you don’t have content for us please put yourself first you deserve it. Life isn’t always highlights and that’s natural. Please take care of yourself before thinking of us❤️
I recently or not recently, but I got operated and I have really intense nerve pain in my feet. I’m always disabled but this is much worse. I can’t go out and get my normal social life, and do the same things I used to do and then I become drained because of it so you are not alone I pray that you feel better soon❤
@@wheelchair_gamer786 My heart goes out to you! I don't deal with nerve pain personally, but I've understood it can be very difficult to handle. I hope you get some new medication/treatment that can lessen it, or at least that you learn ways to cope with it.
When I'm suffering I try to be extra kind to myself, to counter the negative experience. Drinking hot chocolate, sitting with a blanket in the sofa and watching my favourite tv-show doesn't solve any problems, but it helps me cope with them and refill my energy.
Hugs!
@@wheelchair_gamer786I get that, I have sfn bc of my eds, nerve pain in is the worst, especially in hands and feet
I'm 50. Disabled female. You said exactly how I've felt and what I've been going through over and over and over. It's a cycle I'm kinda used to. I highly enjoy life while I'm the active part of my cycle. I dread the down sides of my cycles. But it's the same, for me, over and over, no matter how much I live or don't live during any part of my cycles. So I've decided that I'm just going to overdo it when I can and rest when I need to. Just enjoy what you can when you can. The pain will come. So. Live life. Then be on with not living life.
♥️🫰♥️ True Story 😢😉💭❣️
I'm so sorry that you are struggling rn. I can't say that i can understand everything you're going through, but I can understand a little. I am always going to be here rooting for you and you have all my support as one person with a chronic illness to another like you said it fluctuates so this will get better and we will be here for you.
BTW you have said all the things that I have wanted to say for years.
I watch your videos and I'm amazed. I watched this one and and the second you said "I see you" I had to stop and I started balling. No one has ever said that to me. That and the following bit you said. But.... "I see you".
I'm having a terrible day symptom wise and for sometimes (we don't know why) I have been waking up every day for the last week or so dizzy, unable to walk and barely able to see.
So thank you.
Thank you so much for this! I hope you’re feeling a little better now. you’re such an inspiration to so many people and you’ve helped me feel so much less alone!❤️
Yes, exactly!! I relate so much! Thank you for sharing your experience! I hope you can get to a point where things arent as rough as they are now and be able to do more things that are fun for you. I wish you the best :)
This video was really, really helpful for me. I came to your channel to help me feel more normal and then felt honestly very sad and innadequate with all the travel videos etc. And your great wheelchair (waiting to be fitted finally) and then I opened this video... THIS helps me feel more normal, and okay. That I' not doing something wrong by being in a flare up rn. I don't usually leave comments like this but I love your content and it's really helped me accept my own similar disabilities... and I just wanted to let you know my experience. Thank you
I’m really enjoying your channel and all the variety of content. Taking time and baby steps have helped me keep myself well. I still have flare ups and mental health issues but I’m finding that if I catch myself before I crash I recover quicker. It works for me most of the time and allows me to get stuff done and also take breaks and rest days between bigger tasks and days away from home. Life is tiring but fun, though at times more difficult than I could say here.
It’s lovely to have another person who understands ❤
i just want to thank you deeply for this video, as teen that struggles with chronic illness and is currently going through the exact same thing, it is nice to know that I'm not alone or that I'm not the only one that sometimes can't get out of bed or even take a shower. i have been very depressed and frustrated lately as i have too been in a flare up for weeks and it seems that no matter what i do I'm not getting better. i totally understand what your thinking and feeling!
Omg I can’t believe I’m this early!! ❤️
Thank you for this video Zara, it is very important to show the realities of living with something like this and you are so brave to share this, many people relate to it thank you xx
I’m actually very burnt out at the moment and not doing very well so this was very relatable for me xxx
Your are wise. You are brave. Thank you for sharing...there is a lot there that many people can relate to. Please put yourself first. You deserve it.
I have very similar symptoms to you.. relate so much to this video. Had to spend all summer from my window, i live in a flat.. and all i want is to go outside and see the trees and sun. Wishing you good happy moments in the future.. atleast we are not alone in our struggles.
You are amazing, point blank!! ❤ Please look after yourself! You are so gentle, wise, smart, funny, kind, brave and strong! I admire your strength and love the videos you make!
Please don't be hard on yourself, and know this.....
The world would be a very dark and miserable place without you in it! 🥰❤👍
Hey sweet Zara👋
Thanks for the update, it's nice seeing your face again (of course when you can)😇
I just want to say; even know, i don't have a chronic illness, i can relate and understand to a lot to what you have said. I'm autistic, and for me a part of that is, i'm an overthinker. Sometimes it's so bad that i can cry or have a migraine attack. These things are common in my family. Sometimes, doing little things can be the best for you in that moment. Often the only person who can calm me down, is my mom. Just with saying simple things.🥰
Sending you lots of love, hope you feel better soon. RESPECT!💝💞
Sending good vibes your way. I don’t have a chronic illness but I do have chronic pain and chronic fatigue from a car crash from almost a year ago. Along with other symptoms but those two debilitate me most frequently. I relate to your want to simply go outside and walk around your neighborhood. These simple things just aren’t simple anymore. Adjusting to the new you is a very difficult thing to do. I am currently trying to adjust to who I am not versus who I was before my accident and although who I am isn’t really different, my brain has chemically changed and I have a perspective on life that is drastically different from me before that day. Something that has helped me on days where I don’t feel like I can stay home any longer but I am forced to is doing things that pass time. One night I spent 2 hours sorting my Pokémon cards because I just needed to wait it out until my husband was home. But honestly putting your health at a priority is so important and it is a good thing even if you have to miss out on opportunities. It really stinks but you are doing the right thing. Hoping for peaceful days to come your way.
thank you for helping me feel seen.
Hey, I just wanted to let you know that you really have helped me come to terms with my disabilities and feel confident in trying to access tools to help me have energy and function.
I’m still trying to figure out what exactly is going wrong in what way, I technically know how all my issues started but because of the rarity of survival after birth of the cause, there isn’t enough research to prove anything.
This has made it super hard to get doctors to understand the extent of my problems and I’m always told that I’m too young to deal with everything that I do, so I’ve doubted in the past whether or not I should push for and use mobility aids.
Things took a sudden decline recently, so I finally got my first cane. Your channel and one other got me to the place of acceptance of needling one, and it’s been life-changing. I had no idea how much energy I was spending on balance and walking. Plus, thanks to both channels, I learned that mobility aids can still look good while providing a key function.
I have an adorable pink cane now, have a lot of freedom I didn’t have before, and I am overall doing better mentally than I initially expected as a direct result of you. Thank you ❤
I have severe epilepsy not FND, but i can totally relate to everything you have said. Its shit. Literally. Sending hugs.
Aw Zara. I’m genuinely hoping get better ❤. U helped me understand myself after a few diagnoses. Thank you for everything :)
9:45 so proud of you for going against this. truly. I dislike hustle culture soooo much ahah every fiber of my being has fought against that since forever :')
this made me feel really really seen. THANK YOU ZARAAAAAA🩷🩷🩷🩷🩷🩷
Currently in a bust state after a fun weekend and it's been what feels like punishment for two weeks now. It feels so lonely but then you are suddenly voicing my feelings so articulately!!
I'm sorry you feel so bad. Thank you though for sharing... ❤
I'm feeling you so much rn Zara, Rest you deserve a break, you don't owe anyone anything X your content is so calming, it helps me out of tic attacks, So give yourself what you deserve !! Thank you so much, Gracie
Thank you. Thank you for sharing the truth. Thank you for sharing how difficult everyday things can be. I wish that this could be required viewing. Take care of yourself. We appreciate you.❤️🔥❤️🔥❤️🔥
i just read “5 feet apart” too! it’s such a good book and the movie is amazing. you should read “sick kids in love” if you like this genre of disability/chronic illness romances
Please take as much time as you need Zara as you deserve it and so much more xx💜😊
Just know that i am here for you and i will always be here to support you. Thank you for talking about your chronic illness and being vulnerable and for being here so active making a safe space for people. I love you. I am sorry about the hard days with chronic illness. I am here. You can contact me if you want to and we can be friends and i wanna here about everything ❤❤❤❤❤❤😊😊 I wish i could do ur responsabilities for you so you could relax and recover from burnout
1:24 on a diff subject (not to sound rude to say that) but omg we have the exact same panda soft toy!
PSSS I SO relate to that crap negative cycle of the feelings of things going ick, and then mental health kinda declining along with physical struggles. Oy, I relate too much. We will get through this queen. You are SO strong and I love you.
If you guys can afford a few devices like alexa's, you can use them verbally to send out a broadcast to all speakers. Then you can ask for help or let folks know something is going on. Mine are even attached to my mum's at her house so i can contact her without even having my phone available
Love you lots Zara, please take care of yourself and take your time ❤❤
Thank you Zara I'm in a really awful flare along with school and I really needed a reminder that I'm not alone in feeling the way I do. Take care of yourself ❤️
AuDHD here. Agree on this that it's sooo hard to keep up with daily life while having disabilities. I try to keep a positive mind weeks before my birthday but I gone into burnout out state which unfortunately lead to a deep depression.
It's a hard road to achieve my goals. But while watching this, I'm glad that I'm not the only one thinking about it and I'll try to keep my best and not stopping. Wishing you the best and hope you keep going Zara! Thank you. ❤
Zara I’m sending you all my love, prayers, and hugs ❤❤❤.
Never give up on yourself, Zara. Work towards what you can.
Thank you for sharing that, Zara! ❤ It is SO refreshing to hear other's experiences that helps me realize I am not alone, and someone else actually GETS it!! Like you, I have a multitude of "issues" that affect me differently day by day, sometimes hour by hour, and it is frustrating. Watching and listening to you is encouraging and empowering to me! Thank you and God bless you, Zara!! ❤
I don't know what it's like to be you, but please don't overwork yourself, post content whenever it's possible for you, you're so much stronger than you realize, I hope life gets way much better for you for as long as possible and thank you so much for sharing your experiences, have an amazing day❤
Your very strong, I love watching your vidéos 🥰💪
I took almost 2 weeks off from.filming due to bed bound ....only just came back ..... take as long as your body needs lovely ..... try and pace but sometimes we push ourselves when our bodies can't..... one sub asked me to film every day after I explained I can't.....even going out is exhausting ...... you come first hun ... take as much time as you need ❤
Thank you for sharing 💗 recently I’ve been opening up to my friends more about my health issues and how I’ve been realizing they aren’t normal. I hadn’t been well since I moved back to college, only gotten better this past week. It’s always strange for me coming back from being sick for so long (this time it was a month) because I struggle with the transition back to working at my normal pace again (idk if this is related to being autistic or potentially ADHD but it’s some kind of neurodivergent executive dysfunction struggle). And my normal pace is slower too. And I was so frustrated so many times while sick. I was struggling with my physical and mental health. But I finally reached out for help this time 🌱
Zara you’re gonna figure this out 🌱 go at the pace you need to go. You got this 💪🏼 From the edit it looks like things are looking up again for you; that’s so great :D I hope things continue to improve!
I love you and your videos. School started and i feel so bad too. My history teacher is killing me and im ticcing so much. So i know its hard and what i feeling is not what you feeling but i hope you will be okay❤
I belive that one day you will be well enough to travelling and see the world, you are so strong❤❤
Thank you so much for telling us we really appreciate it and it’s ok to not be ok it’s ok to take a break and I know that I’m not you but I hope this helps ♥️
Everything you're talking about in this video are things I've felt and experienced. Right now, I'm doing quite well. For me therapy, family support, and God, the good ol' G O D, have me feeling so much more content and at peace. There are ups and downs, but for me, honestly, my relationship with Jesus is what keeps me going on the good days and the bad days and everything in between.
Thanks for sharing Zara, you're video's are very comforting when it feels lonely. You're videos helped me realise I had FND
🙏🙏
I’m going through the same thing…. My chronic illness finally got better and now I’m back to where I started. Everyone I know graduated last school year and is continuing school now it started again and I’m left at home, unable to go to school. It’s really lonely knowing I know no one going through the same thing and this is a video I really needed right about now, thank you and I wish you well
I am burn out, only from walking, talking, so you are doing good🙏
Do you have pain daily
@@Truerealism747 like burning sensation yes..what about you?
@@stellaancimer8505 it feals like migraine either sore or pounding in the body I now no I have heds do you? Autism add after 27 years CFS fybromyalgia chronic migraine diagnosis I have no migraine pain in head now all upperbody it's all the autism must be what are you diagnosed with nice to help one another
@@Truerealism747 i am waiting on november to go to the hospital to neurologist, i probably have fybro as well and chronic lyme🙏
@@stellaancimer8505 how long have you had it unsure if I have Lyme but grew up making hay and my mum past last year from severe ms obvously autism heds to where in UK are you going I went to London for heds diagnosis
Nice to see you back I have chronic pain and cerebral palsy because I have scars from scoliosis I wish people knew to keep inviting me to everything just breathe through it and stop internally punching yourself I get it love sinead ps I have a PhD in independent living so I feel like your describing my life
Yep, I empathize...and I haven't the energy to further articulate that.
Incidentally it occurred to me the other day that it might be worth investing in a drone for the days I just can't get outside. Curious to know whether anyone else has put them to this particular use as it seems like it could be therapeutic.
Thanks for sharing; best wishes to you and your family.
Sending you hugs 🥰
You are so strong and beautiful! 💕❤️ I’ve been not feeling well lately so I can relate. I’ve been having stomach issues I’m not sure why. I wish I could hug you and comfort you because I’ve been there before I’ve been struggling currently with autism spectrum disorder. I am currently not feeling too well I think it may be the spectrum disorder. I hope you get better soon you are incredibly strong and beautiful! 💕❤️😊 I will definitely be praying for you stay strong beautiful! ❤️💕😊
Hang in there Zara. Take the small steps one step at a a time. Hopefully you can continue to get better. Enjoy your videos!🙂
As someone with moderate ME and Fibromyalgia (full body pain), I relate to this SO HARD. I'm stuck on the sofa/inside like 95% of the time and wow, people have no idea how boring it is! The worst days are when you're mentally incapacitated as well, meaning you cant even enjoy a film or a book!
I've just had a major flare up myself (after pushing myself on holiday) and my pain levels have been horrendous for a few weeks now. It really sucks. Thankfully though, I've been ill for about 5 years now so I'm (normally) able to manage my mental health ok. I figure that its not worth distressing myself over what I can't control and focus on the small moments of joy. Thats tougher some days than others but its much easier to handle things when you dont have your mind working against you too.
I hope things get easier for you soon and you can find some small joys to keep you going. Hang in there!
It's frustrating and there is a grieving process, but we either adapt and change routines look after ourselves or we get even more ill. Life doesn't look like it did before and that's ok,it's just different. I'm living with many c illnesses and hubby has stage 4cancer...there's still joy. We are more than our diagnosis
life can be a real slog just playing on normal mode zara beth. additional challenges only up the difficulty level and you are at least on very hard (probably more like hardcore+) im sure you have a lot of peoples respect for your attitude and resilience. i know you have mine.
I just noticed your Panda, my daughter has on just like yours and she loves Pandas 🤩❤
Love also the Ghibli posters
Hi I have been diagnosed with epilepsy, it's not the same condition also I admire you because you do something that many people don't do you are sharing your experience and that is very helpful to other people that can feel that they are not alone including me, having a chronic disease is really really hard, where I live that it's Mexico the doctors and many people doesn't understand that we don't ask for this.
it's cool to see how we suport each other, some people really need to see that we are not alone we have many people that share the same diagnosis or even if it isn't the same they feel very similar and That's kind of nice because you can feel empathy and they can empathize with you in certain ways that many people don't do and I'm not saying normal people because many normal people don't judge but many other people they do and it's quiet difficult to not get drowned in all that words of people that don't understand and even with that they are trying to help in the way that they know but they don't understand.
I'm glad to find your channel I liked it, I don't know your attitude about it it's very nice to see it, at least for me it makes a big difference because sometimes you can't meet people like you or like me and it makes you feel a little bit alone and I'm sorry my friends if you read thiz I love you, it's just that talk about some stuff that they don't understand it's kind of nice or... In Spanish we say "te quita un peso de encima" I think in English will be something like "it makes you feel less heavy" 😅
Since I was diagnosed with this I lost people that I really care about and I love, and I feel very sad about it.
I'm still having health issues sometimes for the medicines from other times it's just me and the way that my body works and some other times it gets worst so it's really like a roller coaster 🎢 and for me it's not a good one.
I know that I will live with epilepsy All my life, at the beginning was very depressing, and sometimes it's still feeling like that because many stuff that I used to do I can't do it, I miss so much being in the School I used to study physics and I have to left my career because de epilepsia affect really bad at my brain in that time where I didn't have treatment or even I haven't been diagnosted.
Some days I look the other way where now I know what I have I know how to fight and where to fight it and also I know which fights I can't win.
Like you said it takes many energy from us and I really feel very frustrated because I like to go out and take coffee with girls and Friends now I'm mostly in my home I sometimes make plans with friends and they get upset because I had to cancel and that makes me feel like an awful person😢 and I know that my friends get a little hurt 🤕 that makes me feel really bad. I just want to be like a few years ago going out to hang out with friends or even do simple things like go to the school go to the library and study something that I really like which is physics.
Even in video games I don't play so nice and it's frustrating because I used to play not so well but not so bad. Makes me feel like my body don't response too well in the I don't like it, I liked protect people now I can't protect myself.
I will still going with the treatment, I will do the stuff that I have to do to carry my brain and I know that I have to let go that part of my life 🧬
And adapt to what I am now a human that deserves love.
Thank you really so much for making this video.
❤
I'm sorry for telling my history
Sorry to hear you going through so much. You are so strong. ❤ Have you been inspired to make any new art lately?
So relatable, thank you for sharing
I love your cat it makes me remember my cat Normie and you are in my prayers 😊😊😊😊😊
Thank you for sharing this. I am in the middle of a flare up and my period just started. I want to go home and rest and get better. But I'm scared of my boss getting upset at me.