The normal test results are truly exhausting. Knowing what’s going on helps so, so much. I was diagnosed with IBS around four years ago, and it hasn’t been an answer for most of what’s going on with me. Hearing your story makes me feel less alone. I work full-time, but just barely. Most people don’t take my disabilities seriously, including my family.
I have IBS, too. Have you tried seed prebiotic it has help with my IBS so much. I can finely eat without having to worry about feeling all backup in my stomach.
Some IBS can be resolved with antihistamines. Even if you don’t have any food specific allergies, it can be a sign of high histamines in your body. For some people, it / the only sign they have allergies. Might be worth a try 🤷♀️ that’s how my partner’s life long IBS cleared up.
Chronic fatigue is so hard for well people to understand. I always say to people imagine the worst flu you’ve had, double it then have it every day and you’ll get an idea of our lives. I hope life starts to become easier for you and that you get a diagnosis soon. Negative tests can be hard to deal with when you know there is something wrong with your body. X
Man i can almost feel your pain behind the smile 😢 Im so sorry that your struggling with your health and its holding you back right now. Dont feel bad about not sticking to a schedule, any content from you is a bonus. Keep your head up and never loose your positivity
@@Zara_Beth I'm also a queer disabled writer and it feels so comforting for my journey to hear that you also struggle with writing when you're not feeling well. (But I'm sorry for you!) I have mainly psychiatric stuff going on (2 undiagnosed physical stuff I'm just too tired for trying to get help for) and sometimes I can't write because I'm too depressed. And when I don't write or work on my book I get depressed. It's a vicious cycle. I try to remind me that NO ONE would write a book if they had my health during that time, and therefore trying to be more forgiving towards myself. Now I'm doing better (no idea why) and I'm writing regularly. Enjoying it until next crash. My mood and energy cycles incredibly unpredictable, so I'm enjoying it while I can. Hugs, a fellow writer
All the symptoms you mentioned in the beginning (rashes, random intolerances, chronic fatigue, chronic joint pain) sound like ME/CFS triggered by a viral illness. I got COVID in Jan of 2020 and I randomly became allergic to almost all laundry detergent, developed chronic fatigue, and had a significant worsening of my existing very mild knee pain. I also had a worsening of my existing tachycardia condition and new dysautonomia symptoms like poor temperature regular. All of my tests came back normal except for some inflammatory markers (c-reactive protein and sed rate) and my natural killer cells were on the low end of normal. It sounds like you're already doing the right thing to help you fell better if it is ME/CFS, which is resting as much as you can and not pushing yourself. There aren't any other approved treatments right now, but some people including me have found success with low-dose naltrexone.
Zara, I just want to share that you’re the first queer, disabled, autistic person that I found that has been so open about their journey. Sending so much love from the States! Weirdly, it’s hard for me to find disability advocates and content creators from the US that talk about all of these intersections. But I’ve found so many good folks from whom you’ve shared on your channels. 7 months into my Dx process and the post-viral symptoms give me deja vu. Have ruled out MS, Lyme, NCOS, other neuroinflammatory diseases, Wilson Disease and others. I feel for you so much. Going to try to get screens for POTS starting this week. Your symptoms made me think of this. Wishing you so much luck. 🥺🙏🏽
@@FromTheAshes7 I feeeel your pain! I'm also a UA-camr That talks about my issues, if you want to check me out. I normally don't advertise myself, but I'm Chronically Happy, chronically disabled, chronically battling everyday my invisible illnesses.. EDS, POTS, MCAS, Hashimotos Thyroiditis, ADHD, Autism spectrum, celiac disease, primary immunodeficiency disease (IGG subclass deficiency), and more.. Zara, I truly hope you get more answers, but check into the EDS spectrum of connective tissue diseases. You 👀 look and sound like it could be part of us zebras😘
THANK YOU for talking about how frustrating normal test results can be. I'm going through tests trying to figure out where my migraines are coming from, and every normal test is so discouraging. A lot of people in my life tell me how great it is that things are normal, and I agree, but it's also disheartening when you're in so much pain and just want answers. Thank you for being real. Here's to us chronically ill people getting answers. ❤
Your new symptoms are almost exactly what I experienced/ experience from chronic Lyme and POTS (which can be caused by Lyme or other viruses and bacteria). I dont know if that info helps any but I am wishing you all the best with finding answers soon!
Yes I was thinking Lyme as well, I have a friend who experienced symptoms similar to yours, she was chronically fatigued, developping new intolerances, appetite decreasing, and she was constantly cold. See if they can do a Lyme test, and I would look into working with a Naturopath after doing any chemical treatments so you can hopefully rebuild your system 💛 Idk how it is in the UK, but here in Canada the Lyme test is not sensitive enough to actually detect Lyme, so people usually get tested in the US. Hope you figure out what’s going on soon enough!
@@TukTukLady the funny thing is that in the us the test isn’t super reliable either 😂😢. I was born with the disease, a super rare case since Lyme disease usually doesn’t progress to the mothers uterus before detection and typically when it does it will cause infertility, miscarriage, or the baby won’t make it long. Lyme disease is a monster, and since it took years to figure out what happened it had more than enough time to progress into its chronic form. It’s super disabling, and I agree that a lot of symptoms sound familiar. Hopefully if Lyme disease is the case, the doctors catch it early enough, as I wouldn’t wish the chronic form on my worst enemy
@@oliviavanbrinkMan that sounds horrible 😣 Sorry you have to go through that daily… I know chronic illness sucks. Hope you have a good support system ❤
@@TukTukLady thank you. I have a pretty good support system in my friends and family, although I’m still working on a medical support system outside of my amazing general practitioner (GP). She is amazing but limited and is trying to help me get in with specialists that actually care, but it’s extremely difficult to get into specialists where I am and almost impossible to find ones that aren’t dismissive. Thankfully my friends and family are able to support me through flares, but it is hard even with help to slowly loose freedom to a disease I didn’t know I had until I was 11 and to problems that if doctors listened would never get to the point of disabling or would that point much slower
Bless you for your strength and courage. I hear ya about the solitude, I've basically been stuck in my apartment with a now 18-month-long chronic cough. Can't go out to eat, can't go to movies, mostly pick-up shopping. Bright side it did allow me to finish my novel and release it in April, yay! Hang in there, kid, you're stronger than anything that might be thrown your way!
This sounds like what happened to me. I got covid and have had the same symptoms and ended up getting diagnosed with EDS. It doesn't show up on blood tests so you might need to bring that up, because if becomes more prevalent after a bad illness. I hope you feel better soon ❤
Your entire attitude towards these misfortunes is beyond inspiring to me on a very very personal level. Thank you for that...truly. I will be praying diligently for you that you find the answers you need and will be sending lots of love, and good positive energy and vibes your way.
Psychedelics are just an exceptional mental health breakthrough. It's quite fascinating how effective they are against depression and anxiety. Saved my life.
Can you help with the reliable source I would really appreciate it. Many people talk about mushrooms and psychedelics but nobody talks about where to get them. Very hard to get a reliable source here in Australia. Really need!
Yes, dr.porassss. I have the same experience with anxiety, depression, PTSD and addiction and Mushrooms definitely made a huge huge difference to why am clean today.
Hi Zara i hope you find the answers for your health, or at least some of it 🙏🏻 , hope you can find the perfect attachment you can have for your wheelchair,🙏🏻, and I wish you the best Sunday you can have, sending you a big hug 🙏🏻❤️
Zara, you truly deserve the world! You are a wonderful human being. A true inspiration being this positive despite enduring all the pain and illness. I wish you all the best and hope that you will feel better very soon. Take care ✌️
Hey Zara, I don’t know if you’ve already been tested for POTS, but your symptoms are very very similar to mine. The breathlessness, the blood pooling and poor circulation, brain fog, fatigue, etc. are things I struggle with everyday from my POTS and EDS. I really hope you’re able to figure out what’s put you into the flare up, and that it doesn’t last too long. Thank you for all the awareness and education you provide. You’re awesome!!
Hi Zara! Had Covid at Christmas for the 1st time, and youre story sounds like mine, only 20 times more severe. I developed digestive problems, fatigue and joint pain 2 weeks after all covid symptoms apparently had gone. In my case things became better after rougly 4-5 month, but I´m still not feeling all well yet. What helped in my case was a change to a healthy nutrition and a very carefull - but determined - approach to working out. Wish you all the best and good luck! Love G
Sending so much light and good energy your way! The past month has pushed my limits bc I live in the States, and it is so hot here rn. As a chronically ill person, I feel for you on the receiving normal test results, not knowing what exactly is going on with your body, and wanting answers. Thank you for sharing your experiences🫶🏻
It happened to me last year, and several times over the last few years. Doctors all said it was due to psychiatric conditions such as anxiety.. All tests were normal. It's so frustrating, but I've been better for a few months now. The only advice I have is to make sure to keep your stress as minimal as possible because of several reasons : autistic people react poorly to stress and stress impacts the immune system increasing flare ups and worsening the symptoms.
TYSM for sharing this❣️ I’m dealing with a bunch of chronic (both diagnosed and some not yet) illnesses. It helps to hear from someone else and not have to feel so much guilt about struggling to do things. Especially when we used to be able to do more and it’s not being at an “old” age. Take as much time as you need. But I’m glad you have aspirations and you’ve already made a great impact ❤. Take care 😊💖
Hi Zara, thanks for posting this. Its so validating. I have just received a provisional diagnosis of FND, but not sure its the final answer. Those negative test results are the worst! Love to you ❤
I know it’s hard, but the best thing you can do is try your best to keep calm about it. Stress can flare up your symptoms that has happened to me. So many times and it has been quite serious before.
Hi! I’m sorry that you are going through all of this. I hope that you can get some answers soon and that things will turn around. I’m sure you’ve heard this a lot, but please don’t worry about posting if you’re not feeling well enough. We all care about you and want you to feel better!
As a fellow medical mystery here I understand just getting bloods are truly exhausting as well as being told you need this scan could be cancer don’t worry like that would fix anything good luck Zara 💖✨💞
Hi Zara Beth. You are an amazing being of light. I get your struggles. I just received my 42nd diagnosis, and I also live with chronic pain. Know that my prayers are with you. Thank you for bringing clarity to my day. Love, blessings, and hugs to you always. ❤❤❤💐🌈🌤
I hope you have people around you or friends that can come over. I can't know how bad your chronic illness makes you feel but I know the isolation of staying at home and only resting can be pretty bad.
Oh Zara, that sadly sounds like my story 😬.... Im autistic and hypermobile (EDS not diagnosed). After Covid 03/2020 my health got so worse. Symptoms like you are describing. I was diagnosed with Post-Covid and ME/CFS and POTS. Especially because you are hypermobile do the NASA lean test to rule out or diagnose POTS. Your GP can do this simple test. And if you have POTS, there are things like compression socks and medication. Btw compression socks help me to relax (a lots of people with autism benefit wearing compression garnments - there are studies about this topic and a potential link between damage of collagene leading to "atypical"/autistic brain developement). I have had myokarditis, too. Long story short because of my autism (and depression) medical experts invalidated me so badly and the diagnosis was delayed. I'm hoping you have good medical support. Pacing is gold... And so hard. In my worst times I was 24/7 bedbound and brushing my teeth in bed was to exhausting. Edit: To your abdominal pain story: I've had bad symptoms for 6 month. Bad pain (11 out of 10) when Ingot to exhausted and "crashed", flushing body, rinsing nose and eyes. I suspected anything histamine-related. I never had intolerances or anything. Desperately (because no Dr. found out anything) I bought myself antihistamines for allergies over the counter. That really worked 🤷🏻♀️. And in addition my destroyed sleep (because of high heartrate and permanent stress) is normal.
Hii have you heard of MCAS commone with pots and eds and autistic AFAB and antihistamines are kinda the main treatment it's basically "you're allergic to everything"
@@InaraBallesteroYes, thank you 🎉 I heard of it. I had some blood-tests running, but without confirmation of MCAS. I couldn't stand histamine-free-diet... It was to complicated with my fatigue. I'm happy antihistamines do their job 😊
Hi Zara, I appreciate it's expensive but my friend struggled with similar symptoms for years and the thing that helped her most was a private medical investigation. She ended up with a specialist panel of doctors working to help her and she's doing so much better now. They looked at much more than the NHS had capacity too, including her diet, microbiome, physical therapy and medication.
So glad to see you back Zara, I am glad that chatting with us helps you feel emotionally better too! I’m glad you are finding possible solutions to your wheelchair situation. I’m sorry you don’t have answers yet for the health issues. I hope you get answers soon. Until then, take it one hour at a time and I’ll be here when you are feeling good enough to film! Sending my love and support to you from the US! ❤❤❤
Zara I'm so sorry you are going through this, I personally constantly struggle with a feeling of constantly being tired so I can some what relate to not being able to go places as easily as others can. I hope that you know that it is perfectly fine if you need to take a break from social media because of your health,.it is so much more important that you take care of yourself then post. Hope you feel better soon and get the answers that you need.
I hope you feel better, and you will be in my thoughts. Don't worry about the book and the videos, your health and well being is the most important thing. Thank you for inspiring many people, and provoking people to keep trying no matter what. ❤❤❤
Hey Zara! I am so sorry for what you Are going through and it hurts to think that There is nothing i can do to help! But just know you have inspired me and so many others, and just knowing that i have you to Watch when i feel ither sad or when i feel happy your channel always makes me smile and i hope you know that i WISH you the best and i hope you will Get better right now! But just know i am proud of you and i wish you the best in your journey on getting better and i hope you’ll Get better really soon! You make my days better and i hope you know that ❤ you are doing god’s work! Thank you. 🥹❤️
I'm sorry that you've been having health issues and others have said, just film what you can when you can - your health and wellbeing is the most important thing. I empathise with your situation - whilst I don't have chronic illness, I have been going through my own health issues this year. It started back in September when I caught covid (I'd managed to avoid it until then), which permanently worsened my asthma to the point that at one stage I was getting breathless standing up or not being able to finish sentences. It's better now, but still not great and very frustrating not being able to do things that I normally would and having to actually monitor my asthma for the first time in a very long time (I've had it my whole life). I've also been having some mental health issues which came to a head also in February (slightly terrifying when you mentioned how long it's been), which in hindsight have been going on for years (likely caused by undiagnosed autism and ADHD, which I've still not been referred for assessments for...) but I'm finally trying to deal with them. I'm trying to plan things now I'm feeling a little better, but also ignoring a hell of a lot of stuff and often feeling like I'm stuck in early spring, whilst the world has moved onto midsummer. I somehow managed to move house in March (although my partner did the vast majority of the organising and peopling), but I barely remember it to be honest other than the relief of being in the new place. I'm currently on holiday camping and whilst it's been lovely to have some peace and quiet, it's also been tough realising that I'm struggling to do things that I didn't used to think about at all. I don't know where I'm going with this ramble, but I guess what I'm trying to say is that this video was helpful for me, even though our issues are different, I'm not the only one struggling at the moment and others do understand. Finally, I hope you start to get some answers soon and also get some fun times in amongst the bad days. 🥰
Zara, don't be sad. You are such a strong woman, this too shall pass. You know what? When I hear your voice, you speaking like this, it's always a morale boost for me. There is something in your speech and voice that is so.....Good.
I had very similar symptoms during Lyme disease. It was a terrible experience. Hope your doctors will figure things out and you will feel better soon!! 💛☀
Take your time! Although I know it sucks so much to miss out on cool opportunities (I've just been dismissed from my job due to my disabilities worsening) I've been finding the concept of Crip Time very helpful in thinking about doing things at a pace that suits my bodymind. Thanks for helping us all feel more seen in the world ❤ And I would love to see more of your electric wheelchair journey!
I understand the process you are going through with the diagnosis process and how draining it is. Please take the time to take care of yourself, and the true fans will be here waiting to support you where we can.
I feel you on a spiritual level! I had my first “seizure” 4 years ago and got my FND with NES diagnosis 3 years ago. Still don’t have any answers, just more questions honestly. Plus fighting the government for validation of my disability. I fear going to doctors due to being abused (for lack of a better term) by a nurse during my first seizure. It’s all disconcerting and discouraging but I have to keep pushing not just for me but for people that are also in my situation. Please don’t feel alone! There’s SO many of us, as I’m also learning. Please keep sharing your story and your beautiful smile!
I just wanted to say I recently stumbled across your videos and love them. Your voice is beautiful and I think I could listen to it all day. And I really appreciate what you’re sharing.
Oh, I'm so sorry you're dealing with this. Being disabled & having to accept your limitations really stings sometimes, particularly if you weren't diagnosed until you were almost an adult. Just feeling all your plans for yourself and your life slipping away, and just feeling powerless, and it hurts. It's ok to acknowledge that, & give yourself space to feel that. BUT! As long as you can be really, brutally honest about what you CAN do, not what you think you could do if you powered through and tried your hardest just so everyone you love can see you're doing your part - I have done that waaaaay too many times & always paid the piper for it in the short term - just ask yourself, if someone you loved was setting themselves on fire like that because they thought others wanted to prove themselves like that, you'd tell them not to. Your loved ones will understand & accept your limitations. Be strict about pacing yourself. Listen to your body & respect its warnings. Then you can plan the things you want to do, realistically, & you'll be happier & not as destroyed by the following flare-up & collapse. It will still happen, just plan for it. Also, consider getting tested for hEDS, as you seem to have some overlapping symptoms there. Finally, try looking into medical cannabis as part of your medication - it's legal in the UK for these sorts of things but you have to do it through private clinics & pay for private prescriptions (which ran me like £100 for the appt and £120 for the meds a few years ago) but WOW. It really helped with the pain i have with fibromyalgia. It was too expensive for me to keep up, but i wish I could have afforded to. I hope your health and energy improve soon, and you save spoons for good things!
Sending you all the love girly ❤ ik how frustrating it is trying to look for answers to feel better and just getting negative test after test 🫶 + the mental health toll it takes being stuck in our rooms w bodies that just say no to what we want to do ❤ hugss xxx always here for you love 🫶
I'm so sorry you're struggling! I'm happy I discovered your channel, I also have Autism and its nice seeing a vlogger that I can relate to in some way! Thank you for being you
So excited to read your book. I have similar health issues its so hard to find relatable representation. Thats amazing that youv gotten to the third draft already, massive achievement ❤❤❤❤ Incredibly frustrating to be dealing with this flare for so long, without answers. So glad you have a support system. Lots of love x
Hi Zara :) I first heard your name from Lindsay Murray, who i watch as often as i can manage! While it saddens me how much you're struggling, i can absolutely resonate with a lot of the chronic illness related struggles we face on our journey's. Thank you for being here and for making me feel less alone. ❤
Zara you are a total legend! 👸💪 I just wanted to say thank you. I recently came across your channel and I really appreciate what you’re sharing. So much of what you talk about resonates and/or is really interesting and helpful to know. I’ve noticed your videos help me when I’m feeling blue. You are a great advocate. You inspire me to smile and to keep learning, whilst embracing my neurodivergence 😎✨ thank you
Hey Zara, Thank for the update!! It's nice to see that you where able to make this video! Also, thanks for showing the seizure. I keep finding it very interesting and educational to see those things. And nice that you're getting a power add for your wheelchair😄😄 Of course you don't have to share everything online if you're not comfortable with that, you do what feels good for you😊👍 Hope you getting better and better, lots of love to you❤🧡💛💚💙💜
Hate that you are having these kinds of issues. Yes, each time you get tests and each time they come back without offering answers is frustrating. So hard to not have a diagnosis when you know you are having trouble. You will get better!! Hang in there. We send good wishes every day❣️
It really sucks when tests come back normal. Before I got my FND diagnosis it was 2 years of that uncertainty, having so many blood tests, GP appointments and having to try so many different medications to reduce my pain levels. I really feel your frustration! I hope you can get a solution for your wheelchair issue, I got my mobility scooter last November and it's honestly changed my life and brought me so much more independence. I recommend one that's a category 2 (because it's not as flimsy as a category 1 scooter but not as heavy as an all-terrain scooter, with the cat 2 ones you're less likely to get stuck if you have to go somewhere that's not 100% flat pavement or tarmac and you can detach it to put in the car). Having the scooter allows me to actually be able to go to Tesco's 5 mins away from my house, I'm able to go along the high street to get myself to the library, hydrotherapy and to go on a voyage to the duck pond (such a wild rebellious lifestyle I have haha!). It's meant I've been able to scoot to places I'd never manage to get to by walking and I don't have to rely on my partner for lifts all the time. Without it I can barely walk outside for 10 mins without fatigue hitting hard and having to stop. Any activity more intensive than that requires me to rest the day before, be on the highest dose of my tramadol and accept that I'll not be able to do anything after the activity.
Hope you feel better soon Zara. I agree with what other people are saying. You don't need to feel bad about not uploading. We will just be more exited when you do. Also have a great birthday (we share a birthday).
Uploading every Sunday without fail sounds like so much pressure you put on yourself! I can totally understand that you want to stick to your routine but please take your time and feel what's best for you! We will wait here for you 😊 Greetings from Germany 😊
I'm experiencing a lot of those symptoms (chronic fatigue, body aches, joint pain and moments where my body collapses etc...) also after catching a flu years ago with normal test results and it is so frustrating to not know whats going on or how to manage it and to feel like maybe I'm just being dramatic. I'm so sorry you're going through it but I also thank you for sharing cause I feel a little less alone
I love that you share as much as you're comfortable sharing, and appreciate how enlightening a lot of stuff is. I recently got a mobility scooter, which gives me that same kind of independence you mentioned and I can now do more. If I'm on a really bad day, I still won't go out as I need to use mental energy to be safe, etc, but it's life-changing. Also started using visible myself, and it is generally good for learning how to pace, even if some days I don't see how it can say I'm at a 4 when I definitely feel like a 2 at best, but I hope you can get the benefit of it
I feel this soo much. I am a late diagnosed autistic woman, and that comes with chronic illness.. I am grateful for the days when I feel good! But there are good days and I live for them! I wish you the best! ❤ keep doing what you love and enjoy every day with every small beauty that those days can give you!
Oh, honey. I'm really sorry for what you're experiencing, I get how hard and frustrating this is :(. It's weird I've been going through a four month flare-up as well where I can barely use my left knee anymore out of a mysterious pain that's still undiagnosed, so I got hospitalized for a week without finding any answers and overall, it has been a really intense and awful experience. I have to use crutches and I'm an ambulatory wheelchair user now. It has been a really weird process being still young (I'm a 24yo auDHDer) and so dependent on others to do regular daily life stuff (more dependent, I mean. I have many chronic illnesses that include the fatigue you mention and it SUCKS, and my knee did hurt but not to this level so I had way more mobility before). Anyway, I have to thank you for your videos, it really makes me feel supported, validated, understood and less alone, even living on the other side of the world (I'm in Colombia lol) your message is helping a lot. I'm not used to comment and maybe you won't get to read this, but I'm a gut microbiota specialist (special interest alongside natural, integrative medicine and nutrition) and I wanted to tell you something regarding the symptoms you're mentioning, maybe it could help, idk. To me, it sounds like a typical post-virus scenario for cases when the body is already going through too much. It's usual for many chronically ill people that infections end up being like a "detonator" that spills the body's cup, even activating genetic susceptibilities for developing other conditions, and it has A LOT to do with the gut microbiota affecting the digestive tract. Viruses are not only respiratory, they have a severe impact on the gut, augmenting gut permeability and causing disbiosis, which is the name for when the microbes get out of balance. When permeability is out of control, it's like your gut becomes a strainer that cannot filter the bad from the good stuff, generating fatigue and a lot of random issues including food intolerances (traces of food get to the bloodstream undigested, causing an immune reaction and a lot of inflammation), and creating the perfect scenario for bad bacteria to overgrow, damaging the tissue and generating bad waste products your body has to filter and process, so if due to your other conditions your microbiota was already disbiotic, this excess of toxins ends up wreaking havoc and taking your body literally to its limit. Actually, there's evidence treating disbiosis can improve tourette's, those two seem to be quite related. Not sure about FND, but what I'm sure is that maybe going to a gut microbiota specialist or integrative medicine doctor who knows about it could be really helpful to get out of this flare. Sorry for the long message -or any grammar mistakes lol-, and if you got to read this I thank you a lot for your attention and for using your spoons to read this. I hope things get better, and if you wanted further information, I'd be happy to help you. We're in this together! PS: Blood tests can't detect this stuff, but a functional gut microbiome test via stool could be extremely helpful to know what you can work with more precisely, because our microbiota is like a fingerprint, unique to everyone, so every ecosystem and its unbalance is different for each person :)
I really appreciate you sharing all this. I'm in a similar position, with my life on hold until I'm diagnosed, and I hear you. I just want to know what this thing is, so I can start adapting and planning. Being stuck in limbo is frustrating as heck. I love your positivity through this video, regardless, as I really need to be better about that myself. I'm rooting for you across the Channel from Brittany. My own stuff feels relatively minor by comparison, just hemiparesis, cervical dystonia and occasional spasms. Whether it's bog standard Parkinson's (rare at 32) or something more exotic, I''m itching for the phone call or the letter telling me to go back to hospital to get some answers. More (hoping this isn't inappropriate): from this side of the screen, you're a beautiful lass, inside and out!
After I got Covid in 2022, I started to have acute pain in my chest and especially around my heart. I had shortness of breath and went to emergency twice because of that. Non of the times or ever could the doctors tell me what happened so I’m like pretty confused and frustrated about it….. Anyways, get better soon!❤
Sending you ALL my love, Zara! It breaks my heart to know that you're having to endure so much pain and discomfort. You truly don't deserve any of it. Please take care and please take as much time you'd need without any pressure. We are all always here in your corner, rooting and cheering for you ❤❤ Praying for you with all my heart! May you be surrounded by tenderness, ease, support and soothing comfort as you navigate this chapter of life. Big, gentle hug (only if you like them)
I have a great and understanding primary doctor, but even he didn't understand when I broke down crying when my Lyme disease test came back negative. He thought I was confused and thought it meant I did have Lyme disease. But I was at my breaking point after so many negative or normal test results and I would have gladly accepted any accurate diagnosis. I have a few more diagnoses since then but definitely still have some undiagnosed stuff too. I totally understand the frustration and I'm so sorry you're dealing with all this. ❤
Hey Zara, I've been following you quite a while and feel sorry for you being so unwell lately. I have chronic illness as well, mental health related and also ME/CFS is suspected. Your symptoms sound a lot like that (ME/CFS) to me. I would very much wish you it's not that, but it helped me anyway having a suspected diagnosis and not live with the mystery any more. I wish you will get better soon! All the best for you! ❤
Please take as much time as you need zara, your health is far more important than your unload schedule❤ We love you and we can and will wait patiently for your next video❤ Please take care of yourself ❤
From what I know what you have described it sounds like Ehlers-Danilo’s Syndrome. Love and respect for you to take care of yourself and not sharing what your not comfortable to share❤❤
Are you a cancer too! Happy bday, It's my birthday month too!! And also, It should be obvious that people online are not going to be showing EVERYTHING because we are human and we deserve our privacy too. Sometimes people can forget that though. You are very brave and amazing to share what you do share! GL with everything, and we will enjoy whatever amount of content you are able/want to publish. 💗
We love you Zara and you don't owe us any answers. We know you're struggling and I really hope you find a way out soon, I dont know how it feels to be you but I know how it feels to be stuck. Take as much time as you need, we'll be here when you're ready. Look after yourself first!! Love u!! ❤❤❤❤❤ Side note- I love your mushroom pillow 🍄 -a fellow autistic 🌻💛
Aw im so sorry youve been struggling so much recently. Chronic illness is so very angerint and frustrating, especially when everything on paper is so normal (blood tests etc) the Drs think of you as normal but they dont realise your symptoms or how you're feeling day to day, as long as the results are "okay" or "normal" that's boxes ticked for them. There needs to be more emotional support and counselling for Chronic Illness as it can really upset and depress people, especially at your young ahe when you cant do one of the things you love the most, etc Gymnastics. I hope you manage to improve for a while soon and get back to your Gymnastics and go around the shops etc without going funny x so sorry you have to put up with all seizures and Tourettes too. You're a brave soldier Zara and we're all here for you. ❤️🩷❤️🩷❤️🩷❤️❤️🩷🩷🤗🩷🤗🩷🤗🩷🤗🌺🤗🌺🤗🌹🌹🤗💐🤗💐🌸🤗🌸💐🤗💐🤗🌹🤗🌹🤗🌹🤗🌹🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗
Good luck, man! Obviosuly without presuming anything about your situation, just rambling in hopes something is useful to you, your symptoms reminded me of hEDS+MCAS+possibly POTS (these three commonly come together!) But especially hEDS and MCAS. MCAS is an immune disorder that is known to develop after infections (particuarly COVID!) and hEDS tends to cause or cause a disposition to MCAS. the combination of severe joint instability (characteristic to hEDS) with inexplicable new symtoms like hives & sudden food intolerances (characteristic to MCAS - and hisatmine is usually the largest food MCAS trigger!) rang bells to me. Additionally, both hEDS and MCAS are known and/or have a reputation to be fairly co-occurant with autism and other neurodivergence. Obviously im just speaking from my own personal body of knowedge, and it's absolutely possible both of these are irrelevant to you, but i figured speaking would be beter than not saying anything, just in case. Good luck getting diagnosis and figuring out what's going on, genuinely. It's hard out there!
I've had to go to hospital with a ruptured ovarian cyst (I had an ultrasound in the hospital for diagnosis) and that pain is HORRENDOUS. I have chronic pelvic pain (undiagnosed - I feel you ❤️) and it was wild, I was sick, in and out of consciousness, was just horrible. You have all my sympathies. I'm so sorry to hear about this flare up and hospital visit, and that you had to experience that, on top of other struggles going on. Rest and look after yourself. Sending warm hugs 💕
I hope you start at least feeling somewhat better soon, even if you don't find out exactly why you've been feeling shite in the 1st place. Lots of love and positive energy.
I'm very new to your channel and content, I wish you the absolute best and congratulate you for even putting out one video while all of this is going on! Content creation is something that I really want to do but struggle to even get started with, so the fact that with all of these roadblocks in the way you still put stuff out is a huge inspiration!! Here's hoping things get better for you, lord knows you deserve it o7
The normal test results are truly exhausting. Knowing what’s going on helps so, so much. I was diagnosed with IBS around four years ago, and it hasn’t been an answer for most of what’s going on with me. Hearing your story makes me feel less alone. I work full-time, but just barely. Most people don’t take my disabilities seriously, including my family.
I have IBS, too. Have you tried seed prebiotic it has help with my IBS so much. I can finely eat without having to worry about feeling all backup in my stomach.
Some IBS can be resolved with antihistamines. Even if you don’t have any food specific allergies, it can be a sign of high histamines in your body. For some people, it
/ the only sign they have allergies. Might be worth a try 🤷♀️ that’s how my partner’s life long IBS cleared up.
@IowaCat29 that reminds me of what I'm dealing with in my life. Ugh I'm sorry. ❤️
Chronic fatigue is so hard for well people to understand. I always say to people imagine the worst flu you’ve had, double it then have it every day and you’ll get an idea of our lives. I hope life starts to become easier for you and that you get a diagnosis soon. Negative tests can be hard to deal with when you know there is something wrong with your body. X
Man i can almost feel your pain behind the smile 😢
Im so sorry that your struggling with your health and its holding you back right now. Dont feel bad about not sticking to a schedule, any content from you is a bonus. Keep your head up and never loose your positivity
thank you ❤
@@Zara_Beth I'm also a queer disabled writer and it feels so comforting for my journey to hear that you also struggle with writing when you're not feeling well. (But I'm sorry for you!) I have mainly psychiatric stuff going on (2 undiagnosed physical stuff I'm just too tired for trying to get help for) and sometimes I can't write because I'm too depressed. And when I don't write or work on my book I get depressed. It's a vicious cycle. I try to remind me that NO ONE would write a book if they had my health during that time, and therefore trying to be more forgiving towards myself.
Now I'm doing better (no idea why) and I'm writing regularly. Enjoying it until next crash. My mood and energy cycles incredibly unpredictable, so I'm enjoying it while I can.
Hugs,
a fellow writer
All the symptoms you mentioned in the beginning (rashes, random intolerances, chronic fatigue, chronic joint pain) sound like ME/CFS triggered by a viral illness. I got COVID in Jan of 2020 and I randomly became allergic to almost all laundry detergent, developed chronic fatigue, and had a significant worsening of my existing very mild knee pain. I also had a worsening of my existing tachycardia condition and new dysautonomia symptoms like poor temperature regular. All of my tests came back normal except for some inflammatory markers (c-reactive protein and sed rate) and my natural killer cells were on the low end of normal. It sounds like you're already doing the right thing to help you fell better if it is ME/CFS, which is resting as much as you can and not pushing yourself. There aren't any other approved treatments right now, but some people including me have found success with low-dose naltrexone.
I feel the same, your symptoms mimic mine from those early days of illness.. 😢❤❤
This is literally what happened to me, including bloods result - eerie!!
It feels so validating to know that you exist, thank you 🥹💛
Zara, I just want to share that you’re the first queer, disabled, autistic person that I found that has been so open about their journey. Sending so much love from the States!
Weirdly, it’s hard for me to find disability advocates and content creators from the US that talk about all of these intersections. But I’ve found so many good folks from whom you’ve shared on your channels.
7 months into my Dx process and the post-viral symptoms give me deja vu. Have ruled out MS, Lyme, NCOS, other neuroinflammatory diseases, Wilson Disease and others. I feel for you so much.
Going to try to get screens for POTS starting this week. Your symptoms made me think of this.
Wishing you so much luck. 🥺🙏🏽
@@FromTheAshes7 I feeeel your pain!
I'm also a UA-camr That talks about my issues, if you want to check me out.
I normally don't advertise myself, but I'm Chronically Happy, chronically disabled, chronically battling everyday my invisible illnesses..
EDS, POTS, MCAS, Hashimotos Thyroiditis, ADHD, Autism spectrum, celiac disease, primary immunodeficiency disease (IGG subclass deficiency), and more..
Zara, I truly hope you get more answers, but check into the EDS spectrum of connective tissue diseases. You 👀 look and sound like it could be part of us zebras😘
THANK YOU for talking about how frustrating normal test results can be. I'm going through tests trying to figure out where my migraines are coming from, and every normal test is so discouraging. A lot of people in my life tell me how great it is that things are normal, and I agree, but it's also disheartening when you're in so much pain and just want answers. Thank you for being real. Here's to us chronically ill people getting answers. ❤
i love the heartstopper books on her bedside table
OMG I CANT BELIEVE ZARA HEARTED MY COMMENT!!!!!
Heartstopper is awesome
@@Izzylovesdogs2012 yesssssssssss!!!!
Your new symptoms are almost exactly what I experienced/ experience from chronic Lyme and POTS (which can be caused by Lyme or other viruses and bacteria). I dont know if that info helps any but I am wishing you all the best with finding answers soon!
Yes I was thinking Lyme as well, I have a friend who experienced symptoms similar to yours, she was chronically fatigued, developping new intolerances, appetite decreasing, and she was constantly cold. See if they can do a Lyme test, and I would look into working with a Naturopath after doing any chemical treatments so you can hopefully rebuild your system 💛 Idk how it is in the UK, but here in Canada the Lyme test is not sensitive enough to actually detect Lyme, so people usually get tested in the US.
Hope you figure out what’s going on soon enough!
@@TukTukLady the funny thing is that in the us the test isn’t super reliable either 😂😢.
I was born with the disease, a super rare case since Lyme disease usually doesn’t progress to the mothers uterus before detection and typically when it does it will cause infertility, miscarriage, or the baby won’t make it long.
Lyme disease is a monster, and since it took years to figure out what happened it had more than enough time to progress into its chronic form. It’s super disabling, and I agree that a lot of symptoms sound familiar. Hopefully if Lyme disease is the case, the doctors catch it early enough, as I wouldn’t wish the chronic form on my worst enemy
@@oliviavanbrinkMan that sounds horrible 😣 Sorry you have to go through that daily… I know chronic illness sucks. Hope you have a good support system ❤
@@TukTukLady thank you. I have a pretty good support system in my friends and family, although I’m still working on a medical support system outside of my amazing general practitioner (GP). She is amazing but limited and is trying to help me get in with specialists that actually care, but it’s extremely difficult to get into specialists where I am and almost impossible to find ones that aren’t dismissive.
Thankfully my friends and family are able to support me through flares, but it is hard even with help to slowly loose freedom to a disease I didn’t know I had until I was 11 and to problems that if doctors listened would never get to the point of disabling or would that point much slower
Bless you for your strength and courage. I hear ya about the solitude, I've basically been stuck in my apartment with a now 18-month-long chronic cough. Can't go out to eat, can't go to movies, mostly pick-up shopping. Bright side it did allow me to finish my novel and release it in April, yay! Hang in there, kid, you're stronger than anything that might be thrown your way!
This sounds like what happened to me. I got covid and have had the same symptoms and ended up getting diagnosed with EDS. It doesn't show up on blood tests so you might need to bring that up, because if becomes more prevalent after a bad illness. I hope you feel better soon ❤
Your entire attitude towards these misfortunes is beyond inspiring to me on a very very personal level. Thank you for that...truly. I will be praying diligently for you that you find the answers you need and will be sending lots of love, and good positive energy and vibes your way.
Love, light and spoons to you and all who need them!
Zara, genuinely wish you to find the answers you're looking for and feel manageable on physically and mentally ❤
Psychedelics are just an exceptional mental health breakthrough. It's quite fascinating how effective they are against depression and anxiety. Saved my life.
Can you help with the reliable source I would really appreciate it. Many people talk about mushrooms and psychedelics but nobody talks about where to get them. Very hard to get a reliable source here in Australia. Really need!
Yes, dr.porassss. I have the same experience with anxiety, depression, PTSD and addiction and Mushrooms definitely made a huge huge difference to why am clean today.
Is he on instagram?
Is he on instagraam?
Yes he is dr.porassss.
Hi Zara i hope you find the answers for your health, or at least some of it 🙏🏻 , hope you can find the perfect attachment you can have for your wheelchair,🙏🏻, and I wish you the best Sunday you can have, sending you a big hug 🙏🏻❤️
Zara, you truly deserve the world!
You are a wonderful human being.
A true inspiration being this positive despite enduring all the pain and illness.
I wish you all the best and hope that you will feel better very soon.
Take care ✌️
Hey Zara, I don’t know if you’ve already been tested for POTS, but your symptoms are very very similar to mine. The breathlessness, the blood pooling and poor circulation, brain fog, fatigue, etc. are things I struggle with everyday from my POTS and EDS. I really hope you’re able to figure out what’s put you into the flare up, and that it doesn’t last too long. Thank you for all the awareness and education you provide. You’re awesome!!
Wish you the best. I hated not having answers. Hope you can get the support you need and be able to live your life in all the beautiful ways you wish
Hey Zara. Wish you all the best. I hope you feel better soon
Hi Zara! Had Covid at Christmas for the 1st time, and youre story sounds like mine, only 20 times more severe. I developed digestive problems, fatigue and joint pain 2 weeks after all covid symptoms apparently had gone. In my case things became better after rougly 4-5 month, but I´m still not feeling all well yet. What helped in my case was a change to a healthy nutrition and a very carefull - but determined - approach to working out. Wish you all the best and good luck! Love G
Sending so much light and good energy your way! The past month has pushed my limits bc I live in the States, and it is so hot here rn. As a chronically ill person, I feel for you on the receiving normal test results, not knowing what exactly is going on with your body, and wanting answers. Thank you for sharing your experiences🫶🏻
It happened to me last year, and several times over the last few years. Doctors all said it was due to psychiatric conditions such as anxiety.. All tests were normal. It's so frustrating, but I've been better for a few months now.
The only advice I have is to make sure to keep your stress as minimal as possible because of several reasons : autistic people react poorly to stress and stress impacts the immune system increasing flare ups and worsening the symptoms.
TYSM for sharing this❣️ I’m dealing with a bunch of chronic (both diagnosed and some not yet) illnesses. It helps to hear from someone else and not have to feel so much guilt about struggling to do things. Especially when we used to be able to do more and it’s not being at an “old” age. Take as much time as you need. But I’m glad you have aspirations and you’ve already made a great impact ❤. Take care 😊💖
You're not alone Zara. I will pray for you because I'm there for you and we all love you ❤❤❤
I hope you find out what has been going on :) Thank you for spreading so much awareness and sharing your story ❤
Hi Zara, thanks for posting this. Its so validating. I have just received a provisional diagnosis of FND, but not sure its the final answer. Those negative test results are the worst! Love to you ❤
I know it’s hard, but the best thing you can do is try your best to keep calm about it. Stress can flare up your symptoms that has happened to me. So many times and it has been quite serious before.
Hi! I’m sorry that you are going through all of this. I hope that you can get some answers soon and that things will turn around. I’m sure you’ve heard this a lot, but please don’t worry about posting if you’re not feeling well enough. We all care about you and want you to feel better!
As a fellow medical mystery here I understand just getting bloods are truly exhausting as well as being told you need this scan could be cancer don’t worry like that would fix anything good luck Zara 💖✨💞
I am so sorry for you, but I hope you will get better soon! Big hug!
Hi Zara Beth. You are an amazing being of light. I get your struggles. I just received my 42nd diagnosis, and I also live with chronic pain. Know that my prayers are with you. Thank you for bringing clarity to my day.
Love, blessings, and hugs to you always.
❤❤❤💐🌈🌤
I hope you have people around you or friends that can come over. I can't know how bad your chronic illness makes you feel but I know the isolation of staying at home and only resting can be pretty bad.
Oh Zara, that sadly sounds like my story 😬.... Im autistic and hypermobile (EDS not diagnosed). After Covid 03/2020 my health got so worse. Symptoms like you are describing. I was diagnosed with Post-Covid and ME/CFS and POTS. Especially because you are hypermobile do the NASA lean test to rule out or diagnose POTS. Your GP can do this simple test. And if you have POTS, there are things like compression socks and medication. Btw compression socks help me to relax (a lots of people with autism benefit wearing compression garnments - there are studies about this topic and a potential link between damage of collagene leading to "atypical"/autistic brain developement). I have had myokarditis, too. Long story short because of my autism (and depression) medical experts invalidated me so badly and the diagnosis was delayed. I'm hoping you have good medical support. Pacing is gold... And so hard. In my worst times I was 24/7 bedbound and brushing my teeth in bed was to exhausting.
Edit: To your abdominal pain story: I've had bad symptoms for 6 month. Bad pain (11 out of 10) when Ingot to exhausted and "crashed", flushing body, rinsing nose and eyes. I suspected anything histamine-related. I never had intolerances or anything. Desperately (because no Dr. found out anything) I bought myself antihistamines for allergies over the counter. That really worked 🤷🏻♀️. And in addition my destroyed sleep (because of high heartrate and permanent stress) is normal.
Hii have you heard of MCAS commone with pots and eds and autistic AFAB and antihistamines are kinda the main treatment it's basically "you're allergic to everything"
@@InaraBallesteroYes, thank you 🎉 I heard of it. I had some blood-tests running, but without confirmation of MCAS. I couldn't stand histamine-free-diet... It was to complicated with my fatigue. I'm happy antihistamines do their job 😊
Hi Zara, I appreciate it's expensive but my friend struggled with similar symptoms for years and the thing that helped her most was a private medical investigation. She ended up with a specialist panel of doctors working to help her and she's doing so much better now. They looked at much more than the NHS had capacity too, including her diet, microbiome, physical therapy and medication.
So glad to see you back Zara, I am glad that chatting with us helps you feel emotionally better too! I’m glad you are finding possible solutions to your wheelchair situation. I’m sorry you don’t have answers yet for the health issues. I hope you get answers soon. Until then, take it one hour at a time and I’ll be here when you are feeling good enough to film! Sending my love and support to you from the US! ❤❤❤
Zara I'm so sorry you are going through this, I personally constantly struggle with a feeling of constantly being tired so I can some what relate to not being able to go places as easily as others can. I hope that you know that it is perfectly fine if you need to take a break from social media because of your health,.it is so much more important that you take care of yourself then post. Hope you feel better soon and get the answers that you need.
I hope you feel better, and you will be in my thoughts. Don't worry about the book and the videos, your health and well being is the most important thing. Thank you for inspiring many people, and provoking people to keep trying no matter what. ❤❤❤
Hey Zara! I am so sorry for what you Are going through and it hurts to think that There is nothing i can do to help! But just know you have inspired me and so many others, and just knowing that i have you to Watch when i feel ither sad or when i feel happy your channel always makes me smile and i hope you know that i WISH you the best and i hope you will Get better right now! But just know i am proud of you and i wish you the best in your journey on getting better and i hope you’ll Get better really soon! You make my days better and i hope you know that ❤ you are doing god’s work! Thank you. 🥹❤️
Hang in there! ❤
I'm sorry that you've been having health issues and others have said, just film what you can when you can - your health and wellbeing is the most important thing.
I empathise with your situation - whilst I don't have chronic illness, I have been going through my own health issues this year. It started back in September when I caught covid (I'd managed to avoid it until then), which permanently worsened my asthma to the point that at one stage I was getting breathless standing up or not being able to finish sentences. It's better now, but still not great and very frustrating not being able to do things that I normally would and having to actually monitor my asthma for the first time in a very long time (I've had it my whole life).
I've also been having some mental health issues which came to a head also in February (slightly terrifying when you mentioned how long it's been), which in hindsight have been going on for years (likely caused by undiagnosed autism and ADHD, which I've still not been referred for assessments for...) but I'm finally trying to deal with them. I'm trying to plan things now I'm feeling a little better, but also ignoring a hell of a lot of stuff and often feeling like I'm stuck in early spring, whilst the world has moved onto midsummer.
I somehow managed to move house in March (although my partner did the vast majority of the organising and peopling), but I barely remember it to be honest other than the relief of being in the new place.
I'm currently on holiday camping and whilst it's been lovely to have some peace and quiet, it's also been tough realising that I'm struggling to do things that I didn't used to think about at all.
I don't know where I'm going with this ramble, but I guess what I'm trying to say is that this video was helpful for me, even though our issues are different, I'm not the only one struggling at the moment and others do understand.
Finally, I hope you start to get some answers soon and also get some fun times in amongst the bad days. 🥰
Zara, don't be sad. You are such a strong woman, this too shall pass. You know what? When I hear your voice, you speaking like this, it's always a morale boost for me. There is something in your speech and voice that is so.....Good.
I had very similar symptoms during Lyme disease. It was a terrible experience. Hope your doctors will figure things out and you will feel better soon!! 💛☀
Take your time! Although I know it sucks so much to miss out on cool opportunities (I've just been dismissed from my job due to my disabilities worsening) I've been finding the concept of Crip Time very helpful in thinking about doing things at a pace that suits my bodymind. Thanks for helping us all feel more seen in the world ❤ And I would love to see more of your electric wheelchair journey!
I understand the process you are going through with the diagnosis process and how draining it is. Please take the time to take care of yourself, and the true fans will be here waiting to support you where we can.
Some people pray for clear results but when you’ve got a chronic illness and no answers it’s the complete opposite sending hugs x
I feel you on a spiritual level! I had my first “seizure” 4 years ago and got my FND with NES diagnosis 3 years ago. Still don’t have any answers, just more questions honestly. Plus fighting the government for validation of my disability. I fear going to doctors due to being abused (for lack of a better term) by a nurse during my first seizure. It’s all disconcerting and discouraging but I have to keep pushing not just for me but for people that are also in my situation. Please don’t feel alone! There’s SO many of us, as I’m also learning. Please keep sharing your story and your beautiful smile!
I just wanted to say I recently stumbled across your videos and love them. Your voice is beautiful and I think I could listen to it all day. And I really appreciate what you’re sharing.
Oh, I'm so sorry you're dealing with this. Being disabled & having to accept your limitations really stings sometimes, particularly if you weren't diagnosed until you were almost an adult. Just feeling all your plans for yourself and your life slipping away, and just feeling powerless, and it hurts. It's ok to acknowledge that, & give yourself space to feel that.
BUT! As long as you can be really, brutally honest about what you CAN do, not what you think you could do if you powered through and tried your hardest just so everyone you love can see you're doing your part - I have done that waaaaay too many times & always paid the piper for it in the short term - just ask yourself, if someone you loved was setting themselves on fire like that because they thought others wanted to prove themselves like that, you'd tell them not to. Your loved ones will understand & accept your limitations. Be strict about pacing yourself. Listen to your body & respect its warnings. Then you can plan the things you want to do, realistically, & you'll be happier & not as destroyed by the following flare-up & collapse. It will still happen, just plan for it.
Also, consider getting tested for hEDS, as you seem to have some overlapping symptoms there. Finally, try looking into medical cannabis as part of your medication - it's legal in the UK for these sorts of things but you have to do it through private clinics & pay for private prescriptions (which ran me like £100 for the appt and £120 for the meds a few years ago) but WOW. It really helped with the pain i have with fibromyalgia. It was too expensive for me to keep up, but i wish I could have afforded to. I hope your health and energy improve soon, and you save spoons for good things!
I've been in a flare with my own chronic illness for a year now so i get it! you can do it!! ❤ dont feel bad about content! you come first!
Sending you all the love girly ❤ ik how frustrating it is trying to look for answers to feel better and just getting negative test after test 🫶 + the mental health toll it takes being stuck in our rooms w bodies that just say no to what we want to do ❤ hugss xxx always here for you love 🫶
thank you beautiful🥹💕✨ xx
I'm so sorry you're struggling! I'm happy I discovered your channel, I also have Autism and its nice seeing a vlogger that I can relate to in some way! Thank you for being you
So excited to read your book.
I have similar health issues its so hard to find relatable representation.
Thats amazing that youv gotten to the third draft already, massive achievement ❤❤❤❤
Incredibly frustrating to be dealing with this flare for so long, without answers. So glad you have a support system.
Lots of love x
So sorry you got sick 😕
Getting things like that to happen really sucks.
I hope you get better soon ❤
I hope you feel better soon! ❤❤❤
I hope you will find answers soon! It is okay that you will not be uploading as much. Take as much time as you need! Hope you feel better soon too!
sending you love and well wishes through the screen 🫶🏻
Hi Zara :)
I first heard your name from Lindsay Murray, who i watch as often as i can manage!
While it saddens me how much you're struggling, i can absolutely resonate with a lot of the chronic illness related struggles we face on our journey's.
Thank you for being here and for making me feel less alone. ❤
Zara you are a total legend! 👸💪 I just wanted to say thank you. I recently came across your channel and I really appreciate what you’re sharing. So much of what you talk about resonates and/or is really interesting and helpful to know. I’ve noticed your videos help me when I’m feeling blue. You are a great advocate. You inspire me to smile and to keep learning, whilst embracing my neurodivergence 😎✨ thank you
Hey Zara,
Thank for the update!! It's nice to see that you where able to make this video!
Also, thanks for showing the seizure. I keep finding it very interesting and educational to see those things. And nice that you're getting a power add for your wheelchair😄😄
Of course you don't have to share everything online if you're not comfortable with that, you do what feels good for you😊👍
Hope you getting better and better, lots of love to you❤🧡💛💚💙💜
Hate that you are having these kinds of issues. Yes, each time you get tests and each time they come back without offering answers is frustrating. So hard to not have a diagnosis when you know you are having trouble. You will get better!! Hang in there. We send good wishes every day❣️
It really sucks when tests come back normal. Before I got my FND diagnosis it was 2 years of that uncertainty, having so many blood tests, GP appointments and having to try so many different medications to reduce my pain levels. I really feel your frustration! I hope you can get a solution for your wheelchair issue, I got my mobility scooter last November and it's honestly changed my life and brought me so much more independence. I recommend one that's a category 2 (because it's not as flimsy as a category 1 scooter but not as heavy as an all-terrain scooter, with the cat 2 ones you're less likely to get stuck if you have to go somewhere that's not 100% flat pavement or tarmac and you can detach it to put in the car).
Having the scooter allows me to actually be able to go to Tesco's 5 mins away from my house, I'm able to go along the high street to get myself to the library, hydrotherapy and to go on a voyage to the duck pond (such a wild rebellious lifestyle I have haha!). It's meant I've been able to scoot to places I'd never manage to get to by walking and I don't have to rely on my partner for lifts all the time.
Without it I can barely walk outside for 10 mins without fatigue hitting hard and having to stop. Any activity more intensive than that requires me to rest the day before, be on the highest dose of my tramadol and accept that I'll not be able to do anything after the activity.
Keep going Zara! I hope you get better soon
Hope you feel better soon Zara. I agree with what other people are saying. You don't need to feel bad about not uploading. We will just be more exited when you do. Also have a great birthday (we share a birthday).
Hey! Welcome back! I am sorry you are dealing with this 💗 i hope you find answers soon!
Blessings to you. You are not alone. I’ve relapsed with pain due to horrid tics
Please get well soon, your health is more important than the channel ❤
Uploading every Sunday without fail sounds like so much pressure you put on yourself! I can totally understand that you want to stick to your routine but please take your time and feel what's best for you!
We will wait here for you 😊
Greetings from Germany 😊
I'm experiencing a lot of those symptoms (chronic fatigue, body aches, joint pain and moments where my body collapses etc...) also after catching a flu years ago with normal test results and it is so frustrating to not know whats going on or how to manage it and to feel like maybe I'm just being dramatic. I'm so sorry you're going through it but I also thank you for sharing cause I feel a little less alone
I love that you share as much as you're comfortable sharing, and appreciate how enlightening a lot of stuff is. I recently got a mobility scooter, which gives me that same kind of independence you mentioned and I can now do more. If I'm on a really bad day, I still won't go out as I need to use mental energy to be safe, etc, but it's life-changing. Also started using visible myself, and it is generally good for learning how to pace, even if some days I don't see how it can say I'm at a 4 when I definitely feel like a 2 at best, but I hope you can get the benefit of it
I feel this soo much. I am a late diagnosed autistic woman, and that comes with chronic illness.. I am grateful for the days when I feel good! But there are good days and I live for them! I wish you the best! ❤ keep doing what you love and enjoy every day with every small beauty that those days can give you!
Oh, honey. I'm really sorry for what you're experiencing, I get how hard and frustrating this is :(. It's weird I've been going through a four month flare-up as well where I can barely use my left knee anymore out of a mysterious pain that's still undiagnosed, so I got hospitalized for a week without finding any answers and overall, it has been a really intense and awful experience. I have to use crutches and I'm an ambulatory wheelchair user now.
It has been a really weird process being still young (I'm a 24yo auDHDer) and so dependent on others to do regular daily life stuff (more dependent, I mean. I have many chronic illnesses that include the fatigue you mention and it SUCKS, and my knee did hurt but not to this level so I had way more mobility before). Anyway, I have to thank you for your videos, it really makes me feel supported, validated, understood and less alone, even living on the other side of the world (I'm in Colombia lol) your message is helping a lot. I'm not used to comment and maybe you won't get to read this, but I'm a gut microbiota specialist (special interest alongside natural, integrative medicine and nutrition) and I wanted to tell you something regarding the symptoms you're mentioning, maybe it could help, idk.
To me, it sounds like a typical post-virus scenario for cases when the body is already going through too much. It's usual for many chronically ill people that infections end up being like a "detonator" that spills the body's cup, even activating genetic susceptibilities for developing other conditions, and it has A LOT to do with the gut microbiota affecting the digestive tract. Viruses are not only respiratory, they have a severe impact on the gut, augmenting gut permeability and causing disbiosis, which is the name for when the microbes get out of balance. When permeability is out of control, it's like your gut becomes a strainer that cannot filter the bad from the good stuff, generating fatigue and a lot of random issues including food intolerances (traces of food get to the bloodstream undigested, causing an immune reaction and a lot of inflammation), and creating the perfect scenario for bad bacteria to overgrow, damaging the tissue and generating bad waste products your body has to filter and process, so if due to your other conditions your microbiota was already disbiotic, this excess of toxins ends up wreaking havoc and taking your body literally to its limit.
Actually, there's evidence treating disbiosis can improve tourette's, those two seem to be quite related. Not sure about FND, but what I'm sure is that maybe going to a gut microbiota specialist or integrative medicine doctor who knows about it could be really helpful to get out of this flare. Sorry for the long message -or any grammar mistakes lol-, and if you got to read this I thank you a lot for your attention and for using your spoons to read this. I hope things get better, and if you wanted further information, I'd be happy to help you. We're in this together!
PS: Blood tests can't detect this stuff, but a functional gut microbiome test via stool could be extremely helpful to know what you can work with more precisely, because our microbiota is like a fingerprint, unique to everyone, so every ecosystem and its unbalance is different for each person :)
Sending you gentle hugs and love Zara x
Flare twinssss
Hope it gets better for you ml
Wooooo! Been flared since march, totally feel you on this! Hope you feel better soon!
I really appreciate you sharing all this. I'm in a similar position, with my life on hold until I'm diagnosed, and I hear you. I just want to know what this thing is, so I can start adapting and planning. Being stuck in limbo is frustrating as heck. I love your positivity through this video, regardless, as I really need to be better about that myself.
I'm rooting for you across the Channel from Brittany. My own stuff feels relatively minor by comparison, just hemiparesis, cervical dystonia and occasional spasms. Whether it's bog standard Parkinson's (rare at 32) or something more exotic, I''m itching for the phone call or the letter telling me to go back to hospital to get some answers.
More (hoping this isn't inappropriate): from this side of the screen, you're a beautiful lass, inside and out!
After I got Covid in 2022, I started to have acute pain in my chest and especially around my heart. I had shortness of breath and went to emergency twice because of that. Non of the times or ever could the doctors tell me what happened so I’m like pretty confused and frustrated about it…..
Anyways, get better soon!❤
Sending you ALL my love, Zara! It breaks my heart to know that you're having to endure so much pain and discomfort. You truly don't deserve any of it. Please take care and please take as much time you'd need without any pressure. We are all always here in your corner, rooting and cheering for you ❤❤
Praying for you with all my heart! May you be surrounded by tenderness, ease, support and soothing comfort as you navigate this chapter of life. Big, gentle hug (only if you like them)
Love on you, Girl ❤
This is so validating to hear I’m not alone 🥲It sucks going through the diagnosis process,so sending hugs ❤️🩹
I have a great and understanding primary doctor, but even he didn't understand when I broke down crying when my Lyme disease test came back negative. He thought I was confused and thought it meant I did have Lyme disease. But I was at my breaking point after so many negative or normal test results and I would have gladly accepted any accurate diagnosis. I have a few more diagnoses since then but definitely still have some undiagnosed stuff too. I totally understand the frustration and I'm so sorry you're dealing with all this. ❤
Hey Zara, I've been following you quite a while and feel sorry for you being so unwell lately. I have chronic illness as well, mental health related and also ME/CFS is suspected. Your symptoms sound a lot like that (ME/CFS) to me. I would very much wish you it's not that, but it helped me anyway having a suspected diagnosis and not live with the mystery any more. I wish you will get better soon! All the best for you! ❤
Please take as much time as you need zara, your health is far more important than your unload schedule❤
We love you and we can and will wait patiently for your next video❤
Please take care of yourself ❤
I'm so sorry Zara. I'm sending so much love
From what I know what you have described it sounds like Ehlers-Danilo’s Syndrome. Love and respect for you to take care of yourself and not sharing what your not comfortable to share❤❤
Fully relate ml, the searching for answers and the confusion is extremely hard, here’s to being a mystery ❤️
Keep calm about it as stress flares up worse tics or/and fnd
I'm so sorry to hear you're struggling Zara! I wish I could help you, honestly! Chronic illness f*cking sucks! Stay strong, you're the badass!
Are you a cancer too! Happy bday, It's my birthday month too!! And also, It should be obvious that people online are not going to be showing EVERYTHING because we are human and we deserve our privacy too. Sometimes people can forget that though. You are very brave and amazing to share what you do share! GL with everything, and we will enjoy whatever amount of content you are able/want to publish. 💗
It’s so frustrating when one knows something is wrong yet the lab results show nothing. Hang in there Zara. Eventually the source will be discovered.
hi zara!!!!!! happy early birthday and i cant wait to read your books once they are published!!!! ❤❤❤❤
We love you Zara and you don't owe us any answers. We know you're struggling and I really hope you find a way out soon, I dont know how it feels to be you but I know how it feels to be stuck. Take as much time as you need, we'll be here when you're ready. Look after yourself first!! Love u!! ❤❤❤❤❤
Side note- I love your mushroom pillow 🍄
-a fellow autistic 🌻💛
Aw im so sorry youve been struggling so much recently. Chronic illness is so very angerint and frustrating, especially when everything on paper is so normal (blood tests etc) the Drs think of you as normal but they dont realise your symptoms or how you're feeling day to day, as long as the results are "okay" or "normal" that's boxes ticked for them. There needs to be more emotional support and counselling for Chronic Illness as it can really upset and depress people, especially at your young ahe when you cant do one of the things you love the most, etc Gymnastics. I hope you manage to improve for a while soon and get back to your Gymnastics and go around the shops etc without going funny x so sorry you have to put up with all seizures and Tourettes too. You're a brave soldier Zara and we're all here for you. ❤️🩷❤️🩷❤️🩷❤️❤️🩷🩷🤗🩷🤗🩷🤗🩷🤗🌺🤗🌺🤗🌹🌹🤗💐🤗💐🌸🤗🌸💐🤗💐🤗🌹🤗🌹🤗🌹🤗🌹🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌺🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗🌹🤗
Good luck, man! Obviosuly without presuming anything about your situation, just rambling in hopes something is useful to you, your symptoms reminded me of hEDS+MCAS+possibly POTS (these three commonly come together!) But especially hEDS and MCAS. MCAS is an immune disorder that is known to develop after infections (particuarly COVID!) and hEDS tends to cause or cause a disposition to MCAS. the combination of severe joint instability (characteristic to hEDS) with inexplicable new symtoms like hives & sudden food intolerances (characteristic to MCAS - and hisatmine is usually the largest food MCAS trigger!) rang bells to me. Additionally, both hEDS and MCAS are known and/or have a reputation to be fairly co-occurant with autism and other neurodivergence. Obviously im just speaking from my own personal body of knowedge, and it's absolutely possible both of these are irrelevant to you, but i figured speaking would be beter than not saying anything, just in case. Good luck getting diagnosis and figuring out what's going on, genuinely. It's hard out there!
I hope you get better soon!!!
I've had to go to hospital with a ruptured ovarian cyst (I had an ultrasound in the hospital for diagnosis) and that pain is HORRENDOUS. I have chronic pelvic pain (undiagnosed - I feel you ❤️) and it was wild, I was sick, in and out of consciousness, was just horrible. You have all my sympathies. I'm so sorry to hear about this flare up and hospital visit, and that you had to experience that, on top of other struggles going on. Rest and look after yourself. Sending warm hugs 💕
I hope you start at least feeling somewhat better soon, even if you don't find out exactly why you've been feeling shite in the 1st place. Lots of love and positive energy.
I’m so sorry you’re dealing with this.
Pushing through despite your health, you are awesome
I'm very new to your channel and content, I wish you the absolute best and congratulate you for even putting out one video while all of this is going on! Content creation is something that I really want to do but struggle to even get started with, so the fact that with all of these roadblocks in the way you still put stuff out is a huge inspiration!! Here's hoping things get better for you, lord knows you deserve it o7
16:20 I enjoyed it, also the frog (i guess) behind you, looks amazing 👍
❤️ aw dang I’m glad your back 😊