I have a chronic illness. let's talk about ME/CFS. ☆ see me every day @ / ellbat ☆ shop ydyb.shop ☆ instagram @elenalbateman ☆ tiktok @ellbat ☆ second channel @ElenaBateman
Since you shared, to help you feel less alone in your struggles. I'll share my diagnoses (visible and invisible) with you. Pardon me if I overshare. First, an affirmation. You are not useless!❤ you're videos bring many people, myself included, great joy...even if I don't always agree with your point of view. You are not a burden, those people on your life who care for you when you're sick love you, unconditionally. Even those that don't care for you at your worst love you unconditionally, they just aren't given the blessing of visibly showing ot to you. Now to my story. I was born with Spina Bifida meningocele as well as hydrocephalus and a neurogenic bladder. When I was 19 (a month after my birthday in fact), I was in a car accident that caused a TBI, Which brought about new challenges to my life, including mental illness. I have mdd(major depressive disorder) and anxiety....I've recently learned I also have CPTSD, from growing up with an emotionally abusive mother. I also have chronic pain from mostly hydronephrosis, but I also just ache everywhere from being an old fart 😂 (40). I live in a group home because I can't really take care of myself with the totality of my disabilities....the end.
I can relate. I have degenerative joint disease which in ways mirrors your illness minus the exhaustion. I worked 50+ hrs a week until I basically ground my knee and hip joints flat. Then even heavy pain meds like morphine and oxycodone didn't really do much other than allow me to sleep. Without them I would lay in bed with my bones feeling like they were being pulverised. Time went by and I adapted allowing me to just use gabapentin instead of the heavy medications. Things were ok ish for a while. Then came covid and after a relatively mild case my degenerative joint disease went crazy. Now I'm using a wheelchair and pain is again a constant companion. I use UA-cam to explore the world and in a way see people (like yourself) I 'know' to feel less alone. Even if you don't really know who I am. So thanks for putting in the work on the videos. They mean more to people like me than you know. I love the spoons analogy.
I got cfs to, I had cepsis a few years ago and when I was "healthy" and "ready" to leave the hospital I was just exausted allthe time, I had no energy for preparing food,eating,taking my meds,showering, getting dressed or going outside. I thought that the 6 brainsurgeries was the reason and EVERYONE keept telling me it will pass, well now it´s 7 yearslater and I´m still bedbound most of the time. I have about 3-4 hours ofactivity I can use per day butmeetings or going tothe doctor takes about 12-14 hours of rest torecover from.
Aww Elbat! I'm so sorry you have to go through that. You're one of the sweetest, most deserving persons I (pretend to) know. I share a lot of your symptoms through depression, PTSD, social anxiety disorder and avoidant personality disorder (which all share symptoms with each other, so probably much less than it sounds on the whole). To have that accompanied by real pain would just annihilate me. I'm so glad you have a great support system. And I'm a little envious that you have someone to feed you soup. On the other hand, I am *finally* para-menopausal and no more periods for me, so you can suck it.😆 Seriously though, I've been married twice and no one fed me soup. I was in and out of hospital my entire childhood and still, no one fed me soup. Will your family adopt an old twat like me?
i was disgnosed with CFS 10 years ago and only in the last couple years do people not laugh and say "yeah I have chronic fatigue too". Thanks for helping spread awareness
I hate the label they gave it. When I have to say what it is, I always use the full CFIDS. Immune Deficiency Syndrome. Or just tell them you have an Autoimmune disease.
There's a great book by Jeff T Bowels that talks about the use of high extremely high dose vitamin D therapy (up to 100,000 IU a day) to alleviate or cure many illnesses including CFS. Apologies if my reply is overly simplistic, however I wanted to share in case it sparks someones curiousity.
Thanks for helping spread awareness about invisible disabilities. People called me lazy and depressed for 35 years before discovering I have EDS, MCAS, and POTS. You're not alone; there are many people like you and me. I send you a big hug 🧡
I've been watching my mother struggle with POTS symptoms without either of us realizing it for the better part of 4 years. We assumed it was due to her age (75) and her benign brain tumor -- which is still valid, but it may be the part of a problem there's treatment for. Just this week I found out about POTS and the symptoms fit her so well that she's going in to her doctor this week to talk about it. If there's actually something to be done for it we'll both be so relieved. Her anxiety over her "spells" is through the roof. Sometimes not knowing what's going on can be worse. We're hoping this is one of those times. As someone who suffers a variety of mental disorders (only diagnosed in the last decade), I know all about being called lazy, a burden, and a whole host of other things while suffering invisibly. Whether it be physical or mental, awareness needs to be spread far and wide.
As someone with chronic pain disorder, and “invisible” disability, I completely understand how you feel, maybe don’t feel exactly the same, but understand how people don’t believe anything’s wrong because they only see you on “good” days. Also understand the missing out on things, and it also affects your mental health. Sending love your way ❤
Agreed but for me even if they see me on bad days... because I was suffering but not complaining thus it didn't show. I had a chronic disease for a few years and even my family didn't get me because they couldn't "see" my pain and the horror I went through every day. They see blood or a broken arm and they would understand that someone is hurt when they bleed. But if you only tell them how horrible you feel it's like it doesn't exist. If I also had a penny for every person who told me it's all in my head (psychosomatic).
I just came across your channel. I’ve been suffering from chronic infections forever 20 years. Lately, I’ve been getting CFS that lasts anywhere from a week to two months. I have pain from my chronic condition, but the fatigue is relentless at times.It’s a silent illness. I actually had a doctor tell me I don’t look sick and maybe I just have anxiety. The healthcare system in America isn’t the greatest. I hope you have more good days, than bad. Sending ❤ from California
I was diagnosed with CFS at 12 and all my friends and teachers laughed and said I had the ‘lazy disease’. Thanks for making this video as someone who’s suffering can share this with family and friends to prove it’s not the ‘lazy disease’ at all! I’m 27 now and have reduced my symptoms and live a nearly normal life. I hope your symptoms ease 🫶🏼
I have seen my mum struggle with CFS and ME my whole life and it amazes me how strong she is to get up and do things everyday. She was diagnosed over 27 years ago (before I was born) and had to take 4 years off of work because of the severity. She is a qualified therapist now and is in a much better place. Yet, the pain has never gone away; she has just got better at managing it. I hate how our society treat invisible illnesses differently and presume you have to 'look' a certain way to have one. My mum is the strongest person I know and it makes me grateful how open she is about it. Thank you for sharing your own experience! I understand that each day brings new challenges so take care of yourself and be proud of the small victories!
I have fibromyalgia and there's a lot of overlap with CFS and/or go hand in hand. The part you mention about faking it, doing it for attention, etc is all too real for literally everyone I've ever come into contact with that has this grouping of illnesses. Thank you for speaking out to your audience about it! Every bit helps as I'm sure you know. I hope you forever have more good days than bad and all the spoons of your dreams
I was so paranoid about people thinking I was faking, I put fibromyalgia stickers on my car. It’s always well you don’t look sick, good book by the way. The more people understand all of the invisible illnesses the better
My son is in the same boat. I think his doctor was getting tired of me hounding her for answers because she just couldn't find anything. One trip to a rheumatologist was all it took. More than a decade of searching for answers led to one answer that although was not great, but it was finally the missing piece to the puzzle.
I’ve been a silent watcher for a long time, BUT I really felt the need to comment on this video because of how amazing it is. I have Lupus along with other chronic conditions and the fatigue is often one of the most debilitating symptoms. The way my doctor described it once stuck with me. When a normal healthy individual gets a virus their body goes into attack mode in order get rid of that virus. The symptoms of ‘attack mode’ that are common are fevers, chills, cough, etc. You’re also super tired when your sick with a virus because your body is fighting internally every single second until that virus is gone. Someone with chronic or autoimmune conditions this set up is very different. For example, my Lupus is an autoimmune condition, so for some reason my body thinks it’s own cells are foreign and goes into attack mode thinking it’s getting rid of a threat. When in reality it’s attacking healthy cells. Depending on what healthy cells they attack is kind of how my symptoms turn out to be. For example, if they attack my joints, my joints become flared, red and painful. If they attack my skin, my skin become inflamed, red, and painful and so on and so forth. And because my body is constantly in attack mode my body is constantly experiencing fatigue. The average day of fatigue similar to a normal healthy persons temporary fatigue fighting off a virus. You get used to operating at a certain level of pain and fatigue, but other times your body forces you to stop because its too much. “Health is a crown that the healthy wear, but only the sick can see it”. Thank you for being open about this Ellbat, many people feel seen thanks to you. Take care of yourself
Based on the symptoms you described in the beginning, I thought you were severe. I was confused when I saw you working out. Then you said you are mild. It's heartbreaking to realize that this is what mild ME/CFS feels like. Thank you so much for talking out this publicly. You are such a strong person!
I’m actually one of the lucky ones! My crashes can vary from mini to full blown in intensity, but my regular day to day is usually uninterrupted by CFS as long as I pace myself. I would say I’m 80% healthy 80% of the time - which is actually really solid! 💓
I am a spoonie too! For years I would beat myself up mentally for not “being like everyone else” until I found out I have hEDS (hypermobile ehlers-Danlos syndrome); like you, I suffer from chronic fatigue & a lot of pain. Thank you for sharing your story! 🙏
@@stellarae8257 ❤️ thank you, I live in constant pain but I still get by! Glad to know so many can empathize with me; for so long I just felt like ppl would just wonder why I was so lazy! I don’t worry what others think now but it did take a diagnosis in order to stop feeling inferior. 😊
This is my first time doing this so I didn’t know it was going to comment but just want to thank you for shedding more light on post-viral illnesses. Medicine is getting better by the day and I do believe there will be far better treatment options soon. Stay strong ❤
As someone who has lived for almost a decade with terrible symptoms from endometriosis, I know how frustrating and isolating it can be to have a chronic illness, much less an "unseen" illness. You can do everything you're supposed to and take incredible care of yourself and your body will still fail you. Thank you for sharing, I'm proud of you for spreading awareness and continuing to live your life the best way you can!!
No reasonable person would think badly of you for sharing this with the world. I personally applaud your courage to share this and show others who may be suffering similarly that they aren't alone and they're not to blame for things they can't control. Bravo Ellbat!
Thank you for speaking up ❤️ I was recently diagnosed with CVS (Cyclical Vomiting Syndrome) and it’s so hard to explain to people just how debilitating it is when they see me walking around like a ‘normal’ person. The rest of the time I can’t even get out of bed. The excruciating pain, the constant vomiting for at least 24 hours straight, the muscle/joint aches, the migraines. They’re just a tiny part of it - I’m terrified this will rule my life. The pain is so bad during a CVS episode, I can’t even look after my children. We should be normalising chronic conditions and telling the world how bad our pain is, instead of feeling like we have to hide behind normality! Sending love to anyone struggling ❤️
I got diagnosed with cfs when I was 15 and when I was 22 I got diagnosed with fibromyalgia too. I struggle so much and I feel so useless all the time. Thank you so much for this video 💖
my journey has been very similar. got diagnosed with me/cfs and fibromyalgia at the age of 17 and im 23 now. if it helps at all, know that there are people like us and we can support each other. it feels so isolating, it's hard to remember that we're not alone sometimes. you are not useless. you werent put on this planet to achieve some weird standard of productive. i hope you have less pain today and more spoons tomorrow
i knew after a few seconds into the video exactly what you were referring to. i'm 17 and have had moderate to severe m.e/cfs since i was 13. i don't hear about it online very often, so thank you for spreading awareness! sending you all the love
@@ZiggyonMars i'm glad you're doing better! i don't actually know what caused my CFS- it seemed to come out of nowhere. luckily i have a very supportive family and i hope you do also 🙃
My CFS stems from childhood trauma-having both a mental and physical illness is so debilitating! Doesn’t help that no one believes me or understands. I’m not lazy I work so hard but even that’s not enough. Thanks so much for this video, makes me feel less alone ♥️
This was a perfect example of how this feels for real 😭 the spoons analogy, everything. I get so so so sick if I don't get 10+ hours of sleep or if I use more spoons than I actually have and it's EXHAUSTING TO BE SO EXHAUGHTED I relate so much, and I love this video ❤
Thank you for posting this! I have been diagnosed with Post Covid Syndrome (which is basically ME/CFS) & POTS a year ago and haven’t been able to go back to work or Uni since. And you are right, it’s so hard not to feel like a burden or doubt yourself. People (also doctors) think sometimes that I’m faking or that I’m depressed and it took me a while to be confident enough to look for doctors who would take me seriously (I am “lucky” that I also have some measurable heart problems because of covid so that helped in being taken seriously a bit) but it’s still really difficult to explain to people how it feels when they haven’t been through anything similar, so thank again for sharing ❤
I feel like the older I get and the more people I meet the more aware I am of the fact that we're all suffering from something. Be it big or small we're all just trying to get through to the next day and live our lives while we still can. Thank you for being open about your struggles, it means a lot.
Thank you for talking about this. I developed CFS after mono, and doctors acted as though it was irritating to figure out what was wrong with me when tests were coming back normal. After about 6 years, I’ve now reduced my symptoms so significantly that I just got my first FT job in years. One thing I haven’t reclaimed is my ability to work out without major exhaustion, even something small, but I’m hoping to get that back! The spoons analogy is so real. Whenever I’d try to push myself too far to be “normal,” I’d have significant anxiety or even panic attacks. Lesson learned. Slow and steady and a low stress job. 😊
As someone with CFS, hEDS, POTS and FND I feel your pain with this one, and fucking kudos for speaking about it!! My conditions took everything from me, and even now years on like you say it’s a bloody struggle. Thank you for speaking out on your experience, you made myself and no doubt a lot of others feel considerably less alone 💙🦋💙🦋💙🦋💙🦋🦋
Right I've been so overwhelmed by the sheer amount of comments that have spoke about having POTS. I was recently diagnosed after a 10 yr battle. It's good to not feel alone.
You might check thiamine ie vitamin B1 deficiency. Lots of horrors come with this deficiency. Dr Eric berg has videos on this. Drs don’t know this even though well researched.
i was recently diagnosed with a chronic illness, an auto-immune disease, that leaves me EXHAUSTED no matter how much i rest or sleep. ive tried explaining it to people and get so annoyed when ppl tell me "oh lol, i get tired all the time too, thats normal!!" thanks for posting this video, it just makes me happy (i guess?) to know that there is a community of people out there who do know what its like, and its important to talk about it openly!!
Yeah it's like well I don't get un-tired, I'm just tired or completely exhausted to the point of passing out 😅 I might have one normal feeling day a year if I'm lucky but I can't remember my last one. I've been trying melatonin and it has helped me short term but then I go back to being constantly exhausted if I'm not on it, my doctors don't seem to be very helpful, not that I can get hold of one anyway at the moment
Thank you for speaking out! I have fibromyalgia, sleep apnea, chronic back and nerve pain from a spinal disc injury, and many other conditions (too many to list lol). Having invisible and dynamic disabilities is such a struggle, esp dealing w the judgements/ignorance/ableism of others.
I can relate, I "look healthy" but actually suffer from many health conditions, including fibromyalgia, CFS, Ehlers-Danlos syndrome, & many more. I'm doing a lot better now, but I still have awful days when things flare up & I'm never 100% pain-free. I was diagnosed after years of going from Dr. to Dr., some saying it's in my head, in 2011. I'm glad you're sharing this because it's really difficult on a mental, physical & social level. 💜💙🦓
I have long covid, which the main symptom of is CFS. thank you for this video, it makes me feel seen. I am certain people out there don't believe I am ill, especially as long covid is a lot more new and unknown. It's so hard trying to explain it to people just to have them say 'oh yeah I'm tired too maybe I have it'. Frustrating. You explain it so well, thank you
Dear god though I have PMDD and not CFS this is painfully familiar. Thank you for sharing this part of your life, I know how vulnerable it can be opening up like that. ❤️
I don't have ME, but I have a similar chronic illness I've been dealing with for over a decade. I feel this so much and it was beautifully presented. Happy disability pride month!
I've been diagnosed with ME/CFS for 9 years, from age 14. Thank you so much for this awareness video. We need all the awareness we can get since it's very common, but research is so underfunded! I hope that within our lives, we find the root cause of this disease and have treatment options since a cure is unlikely. A wonderful video
I'm also a young person diagnosed with ME/CFS for 2 years. I think one of the hardest parts (as is for many disabilities) letting go of so many things that we used to loved doing that arent accessible for us and grieving potential things we hope to do in the future. What helped me was trying to refocus and appreciate what im still capable of. There's hope though that ME can get better for us (there's a delivery plan for ME being developing in the UK Government rn, look it up). Thanks for sharing and help spread awareness, sending love x
As someone who’s been like this since Jan 2020, thank you so much for sharing this. I had to move cities to move back into my parents’ home. I’ve basically been home bound for 3 1/2 years. On the bad days, the goal is to be able to make it to the bathroom by myself. Thank you so much for raising awareness ❤️ I haven’t been diagnosed with ME yet, but I’m working on getting a second opinion. Drs haven’t been able to find anything else to diagnose me with.
it probably is me/cfs and/or another invisible illness like fibromyalgia. i hope you get that diagnosis soon since i know it can be realy validating. i relate to you so much on all of this. we're in this together 💛
I was diagnosed with CFS about 17/18 years ago. It was so misunderstood, the doctor had to specifically refer to it as M.E because if I remember correctly M.E was covered by the NHS while CFS was seen as a different thing that wasn’t even covered. I know how you feel about struggling to tell people. I’d say I was always tired and my joints ached and I’d get sick whenever I did too much and I’d almost always get the response of “phew me too, I wonder if I have it”. Even my school thought I was faking it. I’ve never really been certain about whether or not I still have it or if it’s just eased up, but luckily it doesn’t seem to affect me nowadays
Thank you for this video. I am so sorry that you are going through this. My youngest son had Lyme disease and ended up with ME/CFS. He went from a straight A high honor roll student in a vocational school to being bedridden for nearly a year. He improved, and we were so relieved that he was finally getting better. It lasted a short time before he got covid and was plummeted back to the beginning. He was a student at Upper Cape Tech Vocational school and the new principal pressured him to unenroll because his absences didn't look good on paper. After he "voluntarily" unenrolled, the school sent a letter that they were unenrolling him due to absences, despite substantial documentation from his neurologist. There is no understanding of how debilitating this is. My son's own PCP told him to just go back to school to "get his mind off of all of this" She was no longer his doctor from that point on. Thank you for sharing your struggle, for shedding light on a condition that is often treated like it is all in your head because sometimes you seem fine.
love that you're talking about this and raising awareness 💛💛 living with a chronic illness is so frustrating - my mum has ME/CFS and i have chronic fatigue as a part of my neuro condition FND and it sucks. not "looking sick" is one of the hardest realities of these things as people just don't GET it! but this will help, you're doing amazing things by speaking out and creating a wider safe space for the community :)
I have never resonated with a video so much. I have cfs too and I could not have described it better myself. In fact, I think I may use this video to describe it to people in my life. Thank you for speaking up about cfs. I can imagine this was not the easiest to film. But, like every video you make, you bossed it 💪 thank you again
Thanks so much for this video. I have PTSD with similar chronic symptoms, they're difficult and the burden feelings are real. As much as I hate to hear your struggles it's nice to know I'm not alone! Sending love. ❤
Thanks so much for addressing this! My mother-in-law was recently diagnosed with CFS and it is so hard for us to have her suffer so much and miss out on so many events 😢
Thank you so much for explaining so eloquently these struggles, visibility for these disabilities is so important and as someone who shys away from having to constantly explain these things to people I am incredibly proud of you! ❤
Thank you so much for continuing to give a voice to those less heard and for being so brave! while I may not have ME/CFS, I do have chronic migraines and I understand so much of this video and how debilitating an invisible chronic illness and disability can be, just like my own. sending you so much love & strength 💜 so proud of you
I've been a subscriber for a while, but only now did I happen upon this video. I was diagnosed with CFS about 2 years ago. The way you explained is so affirming and thorough. My family (as I am still a minor) didn't understand how difficult it is and thought the "mystery symptoms" were something else, but all tests for "more serious" illnesses would come back negative. Even now they laugh it off when I mention it. I thought that it was just depression, which I also have. I wasn't properly educated by my doctor, and thought it was just exhaustion. I feel so validated and I am so happy that you are spreading awareness. Thank you for this and all your videos. 💙
thank you so much for posting this video. I loved hearing about your day to day life and your spoons!! I have been using that analogy for years and most people haven't heard of it!! I hope this video continues to reach people and educate them like it did me!
Thank you so much for posting this! I used to work in research on chronic pain, and I've been dealing with POTS & ME/CFS symptoms as a part of Long Covid for a year. It is incredibly frustrating to know how long ME has been dismissed by the medical research communities, and how little we understand it. As a result, now that Covid is the leading cause of ME/CFS, we are playing catch-up, trying to find causes and treatments while case numbers are shooting up (clinical trials were only JUST announced a month or so after you posted this). Of course, I'm excluded from that "we" as I'm stuck indoors & unable to work or study (any kind of consistent stress will leave me bed-bound). It is incredibly isolating! It means so much to come across a video like yours: It is one thing to chat with people on my online support group, but to physically see someone talking about the struggles makes one feel so much less alone (the brain doesn't know/care what a screen is BTW when processing visual signals & emotional input). I really struggle with feeling like a burden on others, and with anxieties about others thinking I'm "faking": I've had doctors and my former boss (who specializes in rehab of those with ABIs & should have known better) insinuate as much. I consistently feel as if I should be advocating for myself & others with this, explaining to healthy people what is going on to increase awareness, but some people just don't want to hear it. You did a brilliant job explaining symptoms, triggers, pacing, and the emotional fallout of it all! Thank you so SO much for putting it out there. I know all too well the emotional rollercoaster that this decision cost you (and the mental energy it took to make sure you covered everything), but it was worth it: You not only made a lot of people like myself feel less alone while watching, you gave them a tool to explain what life is like to others, making them less isolated overall. Bravo!
this is so precious, thank you so much for sharing this in your own way... I hope you know that you are not a burden on the people around you and that you feel supported also, I loved your filming style, you really said what you wanted to say in such a good way thank you.
Thank you for sharing this with us, I appreciate you so much and it's heart breaking that some days can be so difficult for you. I can only hope and wish you have as many easy days as possible. Take care. You're a beautiful human.
Sending you all the best w this process. I’m watching this and writing while in bed recovering from a hysterectomy following years of endometriosis undiagnosed and symptoms worsening. I’m so grateful I found a doctor who (finally) treated me like a person.
I have this condition too and it makes me feel less alone to hear others experiences, I so often get depressed comparing my life to others so it's nice to see someone being honest about this invisible condition that changes your life so much. ❤
thank you for making this video. ive been suffering with moderate me/cfs for 10 year and i really appreciate you spreading awareness. it is incredibly hard to miss out on so many things and having to cance plans last minute. just remember, by simply existing you have worth, and people love you for who you are not what you can do for them. i try to remind myself of this when i feel like a burden to my loved ones (even though it is hard)
ME is rough, I've seen first hand the damage it can do to not just your body but the mind too. It's been a pleasure seeing you grow and as you said, it doesn't define you. You are strong, you are resilient and you are loved
Thank you so much for sharing! I have been struggling to feel like myself after 1 and a half years of quite bad long covid, which is very similar to cfs/me (except that I apparently have a higher chance of getting back to normal again... Though I am starting to doubt it) To see you, someone I very much respect, perceive as capable and admire talk about invisible illness kind of helps me change a little something in my brain in how I perceive myself. So thank you!
Woooo!!! Yas from one spoonie to another thankyou for sharing this! The more we speak about it the more people know, the more accomodations we get, and the more seriously people take viruses and illnesses that do pose a risk of leaving them with CFS
You have truly been an inspiration, I’ve watched your channel for a long time and seen you grow. I have always valued your honesty, you don’t have to share, but you do and it means so much. Thank you ♥
Thank you for raising awareness! I have a different neurological and joint condition that has similar effects and it's really knocked me back between last year and this year. So frustrating! Bravo to you to for carrying on with it instead of admitting defeat and pushing forward. I hope you can continue to raise awareness and figure out how to best live with what you're stuck with.
Thank you so much. I was diagnosed with hEDS and Fibromyalgia and investigating POTS. I have Post Exertion Malaise as a part of it all. I'm still figuring it all out and whether it might be ME/CFS. People do see me on my best days and it's hard. I haven't felt this quiet about my struggles in a while and I'm a pretty open person especially about mental health. Thank you for putting it into words and thank you for posting it. 💜 From a fellow 🥄-ie
Good on you for having the strength to share this. Clearly you don't let it stop you as your videos are so vibrant and energetic and your sense of humour in videos is always fun.
I'm honored to have come across your channel. You are the person I want to become. Albeit, not your illness. But, your vulnerability, your self awareness all wrapped up in a fabulous, cheeky sense of humor. Please continue to share ALL you are comfortable to share! It makes my day and inspires me to continue to strive to develop though same qualities, virtues. ❤
Thank you for posting this. This takes energy. (I'm a little behind in viewing) My now 18 year old daughter has been sick with ME for 6 years- Severe. Bedbound. You have been an influencer I've found whilst quietly sitting for hours near her, Little did I know you too were sufferring. -- so glad you were able to share so clearly and understandably. I have to believe there will be a cure. Hang in there. You are doing an amazing job. Thanks for lending me a smile on your good days-- so generous.
Thank you for sharing your story, it’s very brave to do so especially on social media. I have IBS and an attack can come from anywhere so I often have to use the disabled toilets. I have been shouting at by the public for using them because they assume I shouldn’t be using them. So I think raising awareness of disabilities is so important for everyone who has daily struggles. Thank you. x
I get you girl and I’m sorry it’s happened to you too. I’ve been working with a functional medical dr and have seen some great results. I’ve also found a great support group online. Happy to share any of these contacts if you want them. Good luck ❤
I’ve been diagnosed with type 2 diabetes since I was 18…my energy levels dropped to the half the brain fog is a daily struggle with my sugar being a mess I can’t actually feel the relief of being fed…I always experience the hunger fatigue…many of my dreams are out of reach…but thanks for mentioning pacing I have been subconsciously using this method not knowing it does exist…girl suffering in your twenties where you’re supposed to build things is the worse feeling ever..doesn’t mean you can’t achieve but it’ll take longer than you expected So lowering your expectations is a must with any illness being constantly disappointed at yourself will take a huge portion of your wellbeing
Really appreciate you sharing that with all of us, makes a huge difference for others to see themselves reflected I’m sure. I used to work in the NHS with patients with CFS/ME and it gave me a small insight and a huge amount of respect for those who have to advocate for themselves on many levels with hidden disabilities and conditions.
Contracted glandular fever in grade 12. Had severe CFS for 8 months. Went from a straight A student to nearly failing out of high school and having to repeat. An eleventh hour plea from my parents got the school to agree me to pass. But we had to fight HARD for it. The school was horrible about the whole thing. My friend had the exact same illness, same time, same symptoms... she went to a private school (I was public) and our experience was like night and day. They were so supportive and understanding about her situation. The school organised private tutors and extended her exams, etc. Mine was a nightmare to deal with. I had been accepted to uni early (was so excited because that was a rare privilege) and I too had to turn it down because of CFS. After 8mnths straight of barely being able to stand up most days or shower myself, of falling asleep at my school desk every day or being late every day by 1-2hrs because I just couldn't drag myself out of bed.... I honestly thought that was going to be my life forever. I started getting a bit depressed. But, thankfully, it finally started easing of after that 8mnths. I would have flareups every few months, then every few years. Then only when I got sick. And then, eventually, not at all. I hope that is what ends up happening for you eventually too. It is truly awful to live with. You are a bit younger than me so thankfully doctors are much more aware now. When I went to school the condition barely even had a name. I had to go to several different doctors before I found one who was young enough to have new medical training who understood. All the old-school docs had no idea. It was very hard. I'm sorry you are still dealing with it. I can say that the few things that helped me (though everyone is different) is a highly bioavailable form of CQ10 (helps produce cellular energy instead of stimulant energy like caffeine which just makes the fatigue even worse). Iron too. Same deal. Magnesium. Zinc. Vit A (be careful of this as too much can build up) and B12 (high dose, bioavailable form). And, of course, just the usual self-care rituals (good sleep hygiene, nutritious food, light exercise). I hope some of those things might help if you haven't already tried them x
My parents, grandparents, best friend and aunt have all struggled with ME/CFS, I can see from them that it’s such a difficult illness to live with. Thank you for taking the time to talk about your struggles ❤️
I just found your channel, and was browsing the videos and stumbled on this one. I can't believe I'm only just finding you when I'm always looking for creators with ME/CFS like me (though they now simply say I have Fibromyalgia, here in Canada). Purely from the intro, I know I'm going to be sharing this with my friends, to show what it's like to have ME. I'll be following religiously, and I wish you all the best this winter season
Thank you for sharing your story. I have pots and it's really hard at times but you learn to pace yourself and do the best you can. Well done for being so hard working while going through this
When you started explaining your symptoms I was waiting to see if it would end up being CFS or Fibromyalgia (I have fibro). I feel like they overlap so much! Thanks you sharing your story and helping to bring awareness to what it feels like to be in a constant state of exhaustion and never feel rested regardless of how much sleep you get.
Thank you for sharing this side of your life. As someone who has an invisible disability. It's very hard to accept and I tend to compare myself to my 'healthy' friends that get to do everything. But acceptance is really the most important part to any disability.
I am so proud of you, this must be so scary to share! I had Lymes at the beginning of the year, not even close to what you experience but the main symptom is extreme tiredness, I remember crying on the couch because I was too exhausted to go to the shop. You're doing amazing, don't let your brain or anyone else tell you otherwise.
Thank you thank you THANK YOU for this video 🙌🏼you summarised what it's like to live with CFS so well !! I have had very similar experience to you and it is so nice to hear someone's story and to feel a little less alone in this xx
This is such a brave, fantastic and informative video - thank you. Hearing real people share real experiences touches so many hearts, mine included, and helps raise awareness. You are such a strong person for being willing to share this, and an awesome teacher (the spoon analogy is perfect), again, thank you and sending joyful hugs your way!
Thank you for sharing this! Not only ME/CFS but also other illnesses will be understood better due to such videos. I was often tired and had to sleep a few hours in the middle of the day due to chronic abdominal pain, but it got better and if it hits me again, it's only for a few hours that I feel heavy (which was just yesterday so that I didn't manage to watch this video). It must be hard to feel kind of like this and more for much more time...
happy disability awareness day besties 💚 im doing a Q&A on IG (@elenalbateman) answering any questions u have about my illness 🌻
Since you shared, to help you feel less alone in your struggles. I'll share my diagnoses (visible and invisible) with you. Pardon me if I overshare. First, an affirmation. You are not useless!❤ you're videos bring many people, myself included, great joy...even if I don't always agree with your point of view. You are not a burden, those people on your life who care for you when you're sick love you, unconditionally. Even those that don't care for you at your worst love you unconditionally, they just aren't given the blessing of visibly showing ot to you.
Now to my story. I was born with Spina Bifida meningocele as well as hydrocephalus and a neurogenic bladder. When I was 19 (a month after my birthday in fact), I was in a car accident that caused a TBI, Which brought about new challenges to my life, including mental illness. I have mdd(major depressive disorder) and anxiety....I've recently learned I also have CPTSD, from growing up with an emotionally abusive mother. I also have chronic pain from mostly hydronephrosis, but I also just ache everywhere from being an old fart 😂 (40). I live in a group home because I can't really take care of myself with the totality of my disabilities....the end.
❤
I can relate.
I have degenerative joint disease which in ways mirrors your illness minus the exhaustion.
I worked 50+ hrs a week until I basically ground my knee and hip joints flat. Then even heavy pain meds like morphine and oxycodone didn't really do much other than allow me to sleep. Without them I would lay in bed with my bones feeling like they were being pulverised.
Time went by and I adapted allowing me to just use gabapentin instead of the heavy medications. Things were ok ish for a while. Then came covid and after a relatively mild case my degenerative joint disease went crazy.
Now I'm using a wheelchair and pain is again a constant companion.
I use UA-cam to explore the world and in a way see people (like yourself) I 'know' to feel less alone. Even if you don't really know who I am.
So thanks for putting in the work on the videos. They mean more to people like me than you know.
I love the spoons analogy.
I got cfs to, I had cepsis a few years ago and when I was "healthy" and "ready" to leave the hospital I was just exausted allthe time, I had no energy for preparing food,eating,taking my meds,showering, getting dressed or going outside. I thought that the 6 brainsurgeries was the reason and EVERYONE keept telling me it will pass, well now it´s 7 yearslater and I´m still bedbound most of the time. I have about 3-4 hours ofactivity I can use per day butmeetings or going tothe doctor takes about 12-14 hours of rest torecover from.
Aww Elbat! I'm so sorry you have to go through that. You're one of the sweetest, most deserving persons I (pretend to) know.
I share a lot of your symptoms through depression, PTSD, social anxiety disorder and avoidant personality disorder (which all share symptoms with each other, so probably much less than it sounds on the whole). To have that accompanied by real pain would just annihilate me. I'm so glad you have a great support system.
And I'm a little envious that you have someone to feed you soup. On the other hand, I am *finally* para-menopausal and no more periods for me, so you can suck it.😆 Seriously though, I've been married twice and no one fed me soup. I was in and out of hospital my entire childhood and still, no one fed me soup. Will your family adopt an old twat like me?
i was disgnosed with CFS 10 years ago and only in the last couple years do people not laugh and say "yeah I have chronic fatigue too". Thanks for helping spread awareness
Was it the prevalence of long covid that made people more aware?
I hate the label they gave it. When I have to say what it is, I always use the full CFIDS. Immune Deficiency Syndrome. Or just tell them you have an Autoimmune disease.
@@Kitkat915e yes i think so. everyone knows someone with long covid now
There's a great book by Jeff T Bowels that talks about the use of high extremely high dose vitamin D therapy (up to 100,000 IU a day) to alleviate or cure many illnesses including CFS. Apologies if my reply is overly simplistic, however I wanted to share in case it sparks someones curiousity.
@Kitkat915e you mean long vaccine side effect...
Thanks for helping spread awareness about invisible disabilities. People called me lazy and depressed for 35 years before discovering I have EDS, MCAS, and POTS. You're not alone; there are many people like you and me. I send you a big hug 🧡
Hello fellow zebra👋 I have hEDS, fibromyalgia, osteoarthritis, and severe chronic pain. Yeah, if people can't see it, they don't believe it exists. :/
Hullo zebras 🦓 , I’m hEDS etc too 👋
I've been watching my mother struggle with POTS symptoms without either of us realizing it for the better part of 4 years. We assumed it was due to her age (75) and her benign brain tumor -- which is still valid, but it may be the part of a problem there's treatment for. Just this week I found out about POTS and the symptoms fit her so well that she's going in to her doctor this week to talk about it. If there's actually something to be done for it we'll both be so relieved. Her anxiety over her "spells" is through the roof. Sometimes not knowing what's going on can be worse. We're hoping this is one of those times.
As someone who suffers a variety of mental disorders (only diagnosed in the last decade), I know all about being called lazy, a burden, and a whole host of other things while suffering invisibly. Whether it be physical or mental, awareness needs to be spread far and wide.
Heroo zebraaa! I too do has heds
Sending love to my fellow zebras ❤
Visibility for things like this is extremely important.
Kudos for this, EB.
thank u bestie
As someone with chronic pain disorder, and “invisible” disability, I completely understand how you feel, maybe don’t feel exactly the same, but understand how people don’t believe anything’s wrong because they only see you on “good” days. Also understand the missing out on things, and it also affects your mental health. Sending love your way ❤
I also have chronic pain disorder and thought exactly the same
Hang in there. All the love, from a fellow pain endurer.
Agreed but for me even if they see me on bad days... because I was suffering but not complaining thus it didn't show. I had a chronic disease for a few years and even my family didn't get me because they couldn't "see" my pain and the horror I went through every day. They see blood or a broken arm and they would understand that someone is hurt when they bleed. But if you only tell them how horrible you feel it's like it doesn't exist. If I also had a penny for every person who told me it's all in my head (psychosomatic).
I just came across your channel. I’ve been suffering from chronic infections forever 20 years. Lately, I’ve been getting CFS that lasts anywhere from a week to two months. I have pain from my chronic condition, but the fatigue is relentless at times.It’s a silent illness.
I actually had a doctor tell me I don’t look sick and maybe I just have anxiety.
The healthcare system in America isn’t the greatest.
I hope you have more good days, than bad.
Sending ❤ from California
@@Dispatern I understand 100%! I wouldn't wish chronic pain on anyone and I don't think my family means to but sometimes I feel like such a wimp ☹️
I was diagnosed with CFS at 12 and all my friends and teachers laughed and said I had the ‘lazy disease’. Thanks for making this video as someone who’s suffering can share this with family and friends to prove it’s not the ‘lazy disease’ at all!
I’m 27 now and have reduced my symptoms and live a nearly normal life. I hope your symptoms ease 🫶🏼
How did u reduce those symptoms.
I have seen my mum struggle with CFS and ME my whole life and it amazes me how strong she is to get up and do things everyday. She was diagnosed over 27 years ago (before I was born) and had to take 4 years off of work because of the severity. She is a qualified therapist now and is in a much better place. Yet, the pain has never gone away; she has just got better at managing it. I hate how our society treat invisible illnesses differently and presume you have to 'look' a certain way to have one. My mum is the strongest person I know and it makes me grateful how open she is about it. Thank you for sharing your own experience! I understand that each day brings new challenges so take care of yourself and be proud of the small victories!
I have fibromyalgia and there's a lot of overlap with CFS and/or go hand in hand. The part you mention about faking it, doing it for attention, etc is all too real for literally everyone I've ever come into contact with that has this grouping of illnesses. Thank you for speaking out to your audience about it! Every bit helps as I'm sure you know. I hope you forever have more good days than bad and all the spoons of your dreams
I was so paranoid about people thinking I was faking, I put fibromyalgia stickers on my car. It’s always well you don’t look sick, good book by the way. The more people understand all of the invisible illnesses the better
My son is in the same boat. I think his doctor was getting tired of me hounding her for answers because she just couldn't find anything. One trip to a rheumatologist was all it took. More than a decade of searching for answers led to one answer that although was not great, but it was finally the missing piece to the puzzle.
Yeah, I got that one too, such a nasty disorder. I struggled over 10 years with it, but it's mostly under control by now.
I’ve been a silent watcher for a long time, BUT I really felt the need to comment on this video because of how amazing it is. I have Lupus along with other chronic conditions and the fatigue is often one of the most debilitating symptoms. The way my doctor described it once stuck with me. When a normal healthy individual gets a virus their body goes into attack mode in order get rid of that virus. The symptoms of ‘attack mode’ that are common are fevers, chills, cough, etc. You’re also super tired when your sick with a virus because your body is fighting internally every single second until that virus is gone. Someone with chronic or autoimmune conditions this set up is very different. For example, my Lupus is an autoimmune condition, so for some reason my body thinks it’s own cells are foreign and goes into attack mode thinking it’s getting rid of a threat. When in reality it’s attacking healthy cells. Depending on what healthy cells they attack is kind of how my symptoms turn out to be. For example, if they attack my joints, my joints become flared, red and painful. If they attack my skin, my skin become inflamed, red, and painful and so on and so forth. And because my body is constantly in attack mode my body is constantly experiencing fatigue. The average day of fatigue similar to a normal healthy persons temporary fatigue fighting off a virus. You get used to operating at a certain level of pain and fatigue, but other times your body forces you to stop because its too much. “Health is a crown that the healthy wear, but only the sick can see it”. Thank you for being open about this Ellbat, many people feel seen thanks to you. Take care of yourself
Well said ❤
@@annabutler2551 💕
Very well said, I also have lupus .
Based on the symptoms you described in the beginning, I thought you were severe. I was confused when I saw you working out. Then you said you are mild. It's heartbreaking to realize that this is what mild ME/CFS feels like.
Thank you so much for talking out this publicly. You are such a strong person!
I’m actually one of the lucky ones! My crashes can vary from mini to full blown in intensity, but my regular day to day is usually uninterrupted by CFS as long as I pace myself. I would say I’m 80% healthy 80% of the time - which is actually really solid! 💓
im so so proud of you speaking up on this and you are so brave for showing your raw emotions and being honest with everyone, love you girl ❤
thank u bestie i appreciate u
I am a spoonie too! For years I would beat myself up mentally for not “being like everyone else” until I found out I have hEDS (hypermobile ehlers-Danlos syndrome); like you, I suffer from chronic fatigue & a lot of pain. Thank you for sharing your story! 🙏
Fellow zebra here too ❤️
I'm in the same boat, too.
i have fibromyalgia and me/cfs and other stuff, and eds seems so incredibly hard. you have my support and i hope you have some good pain days soon
Hi hEDS! I'm vEDS 😊
@@stellarae8257 ❤️ thank you, I live in constant pain but I still get by! Glad to know so many can empathize with me; for so long I just felt like ppl would just wonder why I was so lazy! I don’t worry what others think now but it did take a diagnosis in order to stop feeling inferior. 😊
This is my first time doing this so I didn’t know it was going to comment but just want to thank you for shedding more light on post-viral illnesses. Medicine is getting better by the day and I do believe there will be far better treatment options soon. Stay strong ❤
thank u so much 🥺💚
As someone who has lived for almost a decade with terrible symptoms from endometriosis, I know how frustrating and isolating it can be to have a chronic illness, much less an "unseen" illness. You can do everything you're supposed to and take incredible care of yourself and your body will still fail you. Thank you for sharing, I'm proud of you for spreading awareness and continuing to live your life the best way you can!!
No reasonable person would think badly of you for sharing this with the world. I personally applaud your courage to share this and show others who may be suffering similarly that they aren't alone and they're not to blame for things they can't control. Bravo Ellbat!
Thank you for speaking up ❤️
I was recently diagnosed with CVS (Cyclical Vomiting Syndrome) and it’s so hard to explain to people just how debilitating it is when they see me walking around like a ‘normal’ person. The rest of the time I can’t even get out of bed. The excruciating pain, the constant vomiting for at least 24 hours straight, the muscle/joint aches, the migraines. They’re just a tiny part of it - I’m terrified this will rule my life. The pain is so bad during a CVS episode, I can’t even look after my children.
We should be normalising chronic conditions and telling the world how bad our pain is, instead of feeling like we have to hide behind normality!
Sending love to anyone struggling ❤️
I got ME/CFS 9 months ago after a covid infection at the same time as pneumonia and you're video made me smile to be recognized :)
I got diagnosed with cfs when I was 15 and when I was 22 I got diagnosed with fibromyalgia too. I struggle so much and I feel so useless all the time. Thank you so much for this video 💖
my journey has been very similar. got diagnosed with me/cfs and fibromyalgia at the age of 17 and im 23 now. if it helps at all, know that there are people like us and we can support each other. it feels so isolating, it's hard to remember that we're not alone sometimes. you are not useless. you werent put on this planet to achieve some weird standard of productive. i hope you have less pain today and more spoons tomorrow
i knew after a few seconds into the video exactly what you were referring to. i'm 17 and have had moderate to severe m.e/cfs since i was 13. i don't hear about it online very often, so thank you for spreading awareness! sending you all the love
@@ZiggyonMars i'm glad you're doing better! i don't actually know what caused my CFS- it seemed to come out of nowhere. luckily i have a very supportive family and i hope you do also 🙃
My CFS stems from childhood trauma-having both a mental and physical illness is so debilitating! Doesn’t help that no one believes me or understands. I’m not lazy I work so hard but even that’s not enough. Thanks so much for this video, makes me feel less alone ♥️
This was a perfect example of how this feels for real 😭 the spoons analogy, everything. I get so so so sick if I don't get 10+ hours of sleep or if I use more spoons than I actually have and it's EXHAUSTING TO BE SO EXHAUGHTED I relate so much, and I love this video ❤
Thank you for posting this! I have been diagnosed with Post Covid Syndrome (which is basically ME/CFS) & POTS a year ago and haven’t been able to go back to work or Uni since. And you are right, it’s so hard not to feel like a burden or doubt yourself. People (also doctors) think sometimes that I’m faking or that I’m depressed and it took me a while to be confident enough to look for doctors who would take me seriously (I am “lucky” that I also have some measurable heart problems because of covid so that helped in being taken seriously a bit) but it’s still really difficult to explain to people how it feels when they haven’t been through anything similar, so thank again for sharing ❤
my heart is with you. I hope it improves in the future. I've heard it can eventually get better for some people when set off by a covid infection.
I feel like the older I get and the more people I meet the more aware I am of the fact that we're all suffering from something. Be it big or small we're all just trying to get through to the next day and live our lives while we still can. Thank you for being open about your struggles, it means a lot.
Thank you for talking about this. I developed CFS after mono, and doctors acted as though it was irritating to figure out what was wrong with me when tests were coming back normal. After about 6 years, I’ve now reduced my symptoms so significantly that I just got my first FT job in years. One thing I haven’t reclaimed is my ability to work out without major exhaustion, even something small, but I’m hoping to get that back! The spoons analogy is so real. Whenever I’d try to push myself too far to be “normal,” I’d have significant anxiety or even panic attacks. Lesson learned. Slow and steady and a low stress job. 😊
As someone with CFS, hEDS, POTS and FND I feel your pain with this one, and fucking kudos for speaking about it!! My conditions took everything from me, and even now years on like you say it’s a bloody struggle. Thank you for speaking out on your experience, you made myself and no doubt a lot of others feel considerably less alone 💙🦋💙🦋💙🦋💙🦋🦋
Right I've been so overwhelmed by the sheer amount of comments that have spoke about having POTS. I was recently diagnosed after a 10 yr battle. It's good to not feel alone.
You might check thiamine ie vitamin B1 deficiency. Lots of horrors come with this deficiency. Dr Eric berg has videos on this. Drs don’t know this even though well researched.
i was recently diagnosed with a chronic illness, an auto-immune disease, that leaves me EXHAUSTED no matter how much i rest or sleep. ive tried explaining it to people and get so annoyed when ppl tell me "oh lol, i get tired all the time too, thats normal!!" thanks for posting this video, it just makes me happy (i guess?) to know that there is a community of people out there who do know what its like, and its important to talk about it openly!!
Yeah it's like well I don't get un-tired, I'm just tired or completely exhausted to the point of passing out 😅 I might have one normal feeling day a year if I'm lucky but I can't remember my last one. I've been trying melatonin and it has helped me short term but then I go back to being constantly exhausted if I'm not on it, my doctors don't seem to be very helpful, not that I can get hold of one anyway at the moment
Thank you for speaking out! I have fibromyalgia, sleep apnea, chronic back and nerve pain from a spinal disc injury, and many other conditions (too many to list lol). Having invisible and dynamic disabilities is such a struggle, esp dealing w the judgements/ignorance/ableism of others.
I can relate, I "look healthy" but actually suffer from many health conditions, including fibromyalgia, CFS, Ehlers-Danlos syndrome, & many more. I'm doing a lot better now, but I still have awful days when things flare up & I'm never 100% pain-free. I was diagnosed after years of going from Dr. to Dr., some saying it's in my head, in 2011. I'm glad you're sharing this because it's really difficult on a mental, physical & social level. 💜💙🦓
I have long covid, which the main symptom of is CFS. thank you for this video, it makes me feel seen. I am certain people out there don't believe I am ill, especially as long covid is a lot more new and unknown. It's so hard trying to explain it to people just to have them say 'oh yeah I'm tired too maybe I have it'. Frustrating. You explain it so well, thank you
Dear god though I have PMDD and not CFS this is painfully familiar. Thank you for sharing this part of your life, I know how vulnerable it can be opening up like that. ❤️
Im so proud of you for fighting through this!
I don't have ME, but I have a similar chronic illness I've been dealing with for over a decade. I feel this so much and it was beautifully presented. Happy disability pride month!
I wish you all the best!
I've been diagnosed with ME/CFS for 9 years, from age 14. Thank you so much for this awareness video. We need all the awareness we can get since it's very common, but research is so underfunded! I hope that within our lives, we find the root cause of this disease and have treatment options since a cure is unlikely. A wonderful video
Oh I saw your IG story about this.
Feel better!
So inspiring how you're absolutely crushing it still ✨️
I'm also a young person diagnosed with ME/CFS for 2 years. I think one of the hardest parts (as is for many disabilities) letting go of so many things that we used to loved doing that arent accessible for us and grieving potential things we hope to do in the future. What helped me was trying to refocus and appreciate what im still capable of. There's hope though that ME can get better for us (there's a delivery plan for ME being developing in the UK Government rn, look it up). Thanks for sharing and help spread awareness, sending love x
As someone who’s been like this since Jan 2020, thank you so much for sharing this. I had to move cities to move back into my parents’ home. I’ve basically been home bound for 3 1/2 years. On the bad days, the goal is to be able to make it to the bathroom by myself.
Thank you so much for raising awareness ❤️
I haven’t been diagnosed with ME yet, but I’m working on getting a second opinion. Drs haven’t been able to find anything else to diagnose me with.
I relate to this SO much.
@@hypnotherapy69 you’re not alone ❤️❤️
it probably is me/cfs and/or another invisible illness like fibromyalgia. i hope you get that diagnosis soon since i know it can be realy validating. i relate to you so much on all of this. we're in this together 💛
Same- same 3.5 years…viral start….now living with family since unable to care for myself….
So painfully familiar. I wish there was more awareness of ME/CFS - then we might be closer to a cure or treatment! Fingers crossed we'll get one soon.
I have chronic migraines. I relate to thus so much. Thank you for shining light on people suffering from a chronic illnesses ❤
I was diagnosed with CFS about 17/18 years ago. It was so misunderstood, the doctor had to specifically refer to it as M.E because if I remember correctly M.E was covered by the NHS while CFS was seen as a different thing that wasn’t even covered. I know how you feel about struggling to tell people. I’d say I was always tired and my joints ached and I’d get sick whenever I did too much and I’d almost always get the response of “phew me too, I wonder if I have it”. Even my school thought I was faking it. I’ve never really been certain about whether or not I still have it or if it’s just eased up, but luckily it doesn’t seem to affect me nowadays
these illnesses can definitely go into remission so that may be what youre experiencing. glad youre having a bit of an easier time with it now
Thank you for sharing, I’ve watched a friend live with CFS and it’s just so rough. Spreading awareness is important!
Thank you for this video. I am so sorry that you are going through this. My youngest son had Lyme disease and ended up with ME/CFS. He went from a straight A high honor roll student in a vocational school to being bedridden for nearly a year. He improved, and we were so relieved that he was finally getting better. It lasted a short time before he got covid and was plummeted back to the beginning. He was a student at Upper Cape Tech Vocational school and the new principal pressured him to unenroll because his absences didn't look good on paper. After he "voluntarily" unenrolled, the school sent a letter that they were unenrolling him due to absences, despite substantial documentation from his neurologist. There is no understanding of how debilitating this is. My son's own PCP told him to just go back to school to "get his mind off of all of this" She was no longer his doctor from that point on. Thank you for sharing your struggle, for shedding light on a condition that is often treated like it is all in your head because sometimes you seem fine.
love that you're talking about this and raising awareness 💛💛 living with a chronic illness is so frustrating - my mum has ME/CFS and i have chronic fatigue as a part of my neuro condition FND and it sucks.
not "looking sick" is one of the hardest realities of these things as people just don't GET it! but this will help, you're doing amazing things by speaking out and creating a wider safe space for the community :)
ugh this is heartbreaking im so sorry you go through this. invisible disabilities like this are so hard. 😞 im glad you shared though!
I have never resonated with a video so much. I have cfs too and I could not have described it better myself. In fact, I think I may use this video to describe it to people in my life.
Thank you for speaking up about cfs. I can imagine this was not the easiest to film. But, like every video you make, you bossed it 💪 thank you again
I was diagnosed with Fibromyalgia in 2010. I felt this so hard. Sending you love. 💙
Thanks so much for this video. I have PTSD with similar chronic symptoms, they're difficult and the burden feelings are real. As much as I hate to hear your struggles it's nice to know I'm not alone! Sending love. ❤
Thanks so much for addressing this! My mother-in-law was recently diagnosed with CFS and it is so hard for us to have her suffer so much and miss out on so many events 😢
Thank you so much for explaining so eloquently these struggles, visibility for these disabilities is so important and as someone who shys away from having to constantly explain these things to people I am incredibly proud of you! ❤
Thank you so much for continuing to give a voice to those less heard and for being so brave! while I may not have ME/CFS, I do have chronic migraines and I understand so much of this video and how debilitating an invisible chronic illness and disability can be, just like my own. sending you so much love & strength 💜 so proud of you
thank you for posting this and posting about this topic! so well narrated too.
I've been a subscriber for a while, but only now did I happen upon this video. I was diagnosed with CFS about 2 years ago. The way you explained is so affirming and thorough. My family (as I am still a minor) didn't understand how difficult it is and thought the "mystery symptoms" were something else, but all tests for "more serious" illnesses would come back negative. Even now they laugh it off when I mention it. I thought that it was just depression, which I also have. I wasn't properly educated by my doctor, and thought it was just exhaustion. I feel so validated and I am so happy that you are spreading awareness. Thank you for this and all your videos. 💙
thank you so much for posting this video. I loved hearing about your day to day life and your spoons!! I have been using that analogy for years and most people haven't heard of it!! I hope this video continues to reach people and educate them like it did me!
As a fellow disabled person who use spoons, you have my deepest support ❤
Thank you so much for posting this! I used to work in research on chronic pain, and I've been dealing with POTS & ME/CFS symptoms as a part of Long Covid for a year. It is incredibly frustrating to know how long ME has been dismissed by the medical research communities, and how little we understand it. As a result, now that Covid is the leading cause of ME/CFS, we are playing catch-up, trying to find causes and treatments while case numbers are shooting up (clinical trials were only JUST announced a month or so after you posted this). Of course, I'm excluded from that "we" as I'm stuck indoors & unable to work or study (any kind of consistent stress will leave me bed-bound). It is incredibly isolating! It means so much to come across a video like yours: It is one thing to chat with people on my online support group, but to physically see someone talking about the struggles makes one feel so much less alone (the brain doesn't know/care what a screen is BTW when processing visual signals & emotional input). I really struggle with feeling like a burden on others, and with anxieties about others thinking I'm "faking": I've had doctors and my former boss (who specializes in rehab of those with ABIs & should have known better) insinuate as much. I consistently feel as if I should be advocating for myself & others with this, explaining to healthy people what is going on to increase awareness, but some people just don't want to hear it. You did a brilliant job explaining symptoms, triggers, pacing, and the emotional fallout of it all! Thank you so SO much for putting it out there. I know all too well the emotional rollercoaster that this decision cost you (and the mental energy it took to make sure you covered everything), but it was worth it: You not only made a lot of people like myself feel less alone while watching, you gave them a tool to explain what life is like to others, making them less isolated overall. Bravo!
this is so precious, thank you so much for sharing this in your own way...
I hope you know that you are not a burden on the people around you and that you feel supported
also, I loved your filming style, you really said what you wanted to say in such a good way
thank you.
Thank you for speaking about your struggles. We all wish you the best.
Thank you for sharing this with us, I appreciate you so much and it's heart breaking that some days can be so difficult for you. I can only hope and wish you have as many easy days as possible. Take care. You're a beautiful human.
I’m currently going through the gauntlet of getting possible endometriosis diagnosed so…thank you, this video made me feel less alone
I have endo as well, it sucks, I’m sorry
Sending you all the best w this process. I’m watching this and writing while in bed recovering from a hysterectomy following years of endometriosis undiagnosed and symptoms worsening. I’m so grateful I found a doctor who (finally) treated me like a person.
This was such an excellent video. You provided so much information in such a relatable way. You are incredibly talented.
I have this condition too and it makes me feel less alone to hear others experiences, I so often get depressed comparing my life to others so it's nice to see someone being honest about this invisible condition that changes your life so much. ❤
thank you for making this video. ive been suffering with moderate me/cfs for 10 year and i really appreciate you spreading awareness. it is incredibly hard to miss out on so many things and having to cance plans last minute. just remember, by simply existing you have worth, and people love you for who you are not what you can do for them. i try to remind myself of this when i feel like a burden to my loved ones (even though it is hard)
ME is rough, I've seen first hand the damage it can do to not just your body but the mind too. It's been a pleasure seeing you grow and as you said, it doesn't define you. You are strong, you are resilient and you are loved
Wishing you the best in everything, including this!
That was a powerful story. Thanks for sharing it.
Thank you so much for sharing, from someone with Long Covid things like this NEED to be seen
Thank you so much for sharing! I have been struggling to feel like myself after 1 and a half years of quite bad long covid, which is very similar to cfs/me (except that I apparently have a higher chance of getting back to normal again... Though I am starting to doubt it)
To see you, someone I very much respect, perceive as capable and admire talk about invisible illness kind of helps me change a little something in my brain in how I perceive myself. So thank you!
Woooo!!! Yas from one spoonie to another thankyou for sharing this! The more we speak about it the more people know, the more accomodations we get, and the more seriously people take viruses and illnesses that do pose a risk of leaving them with CFS
You have truly been an inspiration, I’ve watched your channel for a long time and seen you grow. I have always valued your honesty, you don’t have to share, but you do and it means so much. Thank you ♥
An amazing insight into your world. Thank you for sharing it must have been hard to open up in such a way xx
Thank you for raising awareness! I have a different neurological and joint condition that has similar effects and it's really knocked me back between last year and this year. So frustrating! Bravo to you to for carrying on with it instead of admitting defeat and pushing forward. I hope you can continue to raise awareness and figure out how to best live with what you're stuck with.
Thank you so much. I was diagnosed with hEDS and Fibromyalgia and investigating POTS. I have Post Exertion Malaise as a part of it all. I'm still figuring it all out and whether it might be ME/CFS. People do see me on my best days and it's hard. I haven't felt this quiet about my struggles in a while and I'm a pretty open person especially about mental health. Thank you for putting it into words and thank you for posting it. 💜 From a fellow 🥄-ie
Good on you for having the strength to share this. Clearly you don't let it stop you as your videos are so vibrant and energetic and your sense of humour in videos is always fun.
I'm honored to have come across your channel. You are the person I want to become. Albeit, not your illness. But, your vulnerability, your self awareness all wrapped up in a fabulous, cheeky sense of humor. Please continue to share ALL you are comfortable to share! It makes my day and inspires me to continue to strive to develop though same qualities, virtues. ❤
Thank you for posting this. This takes energy. (I'm a little behind in viewing) My now 18 year old daughter has been sick with ME for 6 years- Severe. Bedbound. You have been an influencer I've found whilst quietly sitting for hours near her, Little did I know you too were sufferring. -- so glad you were able to share so clearly and understandably. I have to believe there will be a cure. Hang in there. You are doing an amazing job. Thanks for lending me a smile on your good days-- so generous.
Thank you for sharing your story, it’s very brave to do so especially on social media. I have IBS and an attack can come from anywhere so I often have to use the disabled toilets. I have been shouting at by the public for using them because they assume I shouldn’t be using them. So I think raising awareness of disabilities is so important for everyone who has daily struggles. Thank you. x
I get you girl and I’m sorry it’s happened to you too. I’ve been working with a functional medical dr and have seen some great results. I’ve also found a great support group online. Happy to share any of these contacts if you want them. Good luck ❤
I’ve been diagnosed with type 2 diabetes since I was 18…my energy levels dropped to the half the brain fog is a daily struggle with my sugar being a mess I can’t actually feel the relief of being fed…I always experience the hunger fatigue…many of my dreams are out of reach…but thanks for mentioning pacing I have been subconsciously using this method not knowing it does exist…girl suffering in your twenties where you’re supposed to build things is the worse feeling ever..doesn’t mean you can’t achieve but it’ll take longer than you expected
So lowering your expectations is a must with any illness being constantly disappointed at yourself will take a huge portion of your wellbeing
Really appreciate you sharing that with all of us, makes a huge difference for others to see themselves reflected I’m sure. I used to work in the NHS with patients with CFS/ME and it gave me a small insight and a huge amount of respect for those who have to advocate for themselves on many levels with hidden disabilities and conditions.
Contracted glandular fever in grade 12. Had severe CFS for 8 months. Went from a straight A student to nearly failing out of high school and having to repeat. An eleventh hour plea from my parents got the school to agree me to pass. But we had to fight HARD for it. The school was horrible about the whole thing. My friend had the exact same illness, same time, same symptoms... she went to a private school (I was public) and our experience was like night and day. They were so supportive and understanding about her situation. The school organised private tutors and extended her exams, etc. Mine was a nightmare to deal with. I had been accepted to uni early (was so excited because that was a rare privilege) and I too had to turn it down because of CFS. After 8mnths straight of barely being able to stand up most days or shower myself, of falling asleep at my school desk every day or being late every day by 1-2hrs because I just couldn't drag myself out of bed.... I honestly thought that was going to be my life forever. I started getting a bit depressed. But, thankfully, it finally started easing of after that 8mnths. I would have flareups every few months, then every few years. Then only when I got sick. And then, eventually, not at all. I hope that is what ends up happening for you eventually too. It is truly awful to live with. You are a bit younger than me so thankfully doctors are much more aware now. When I went to school the condition barely even had a name. I had to go to several different doctors before I found one who was young enough to have new medical training who understood. All the old-school docs had no idea. It was very hard. I'm sorry you are still dealing with it. I can say that the few things that helped me (though everyone is different) is a highly bioavailable form of CQ10 (helps produce cellular energy instead of stimulant energy like caffeine which just makes the fatigue even worse). Iron too. Same deal. Magnesium. Zinc. Vit A (be careful of this as too much can build up) and B12 (high dose, bioavailable form). And, of course, just the usual self-care rituals (good sleep hygiene, nutritious food, light exercise). I hope some of those things might help if you haven't already tried them x
Thank u for talking about it. I love how calm and educating you delivered it
My parents, grandparents, best friend and aunt have all struggled with ME/CFS, I can see from them that it’s such a difficult illness to live with. Thank you for taking the time to talk about your struggles ❤️
Thank you so much for sharing this. Also, as a side note, this video was excellently put together and edited! Well done!
I just found your channel, and was browsing the videos and stumbled on this one. I can't believe I'm only just finding you when I'm always looking for creators with ME/CFS like me (though they now simply say I have Fibromyalgia, here in Canada). Purely from the intro, I know I'm going to be sharing this with my friends, to show what it's like to have ME. I'll be following religiously, and I wish you all the best this winter season
Thank you for making this video ❤
I was diagnosed with CFS/ME almost 12 years ago! Its life saving to connect with the spoonie communities online ❤
Thank you for this!!!!! You explain the condition with such clarity and beauty, I hope sharing it will help people in my life understand me better.
Thank you for sharing your story. I have pots and it's really hard at times but you learn to pace yourself and do the best you can. Well done for being so hard working while going through this
Tysm for sharing this and good luck on your journey.
When you started explaining your symptoms I was waiting to see if it would end up being CFS or Fibromyalgia (I have fibro). I feel like they overlap so much! Thanks you sharing your story and helping to bring awareness to what it feels like to be in a constant state of exhaustion and never feel rested regardless of how much sleep you get.
I have fibromyalmgia. Thank you for telling us about what you're going through. Please know that even though it's lonely, you are not alone. ❤️
Thank you for sharing!
Thank you for sharing! I'm so happy you have a great support team ☺️❤️🤗🌺
The spoon analogy is brilliant! That really opened my eyes. I shared your video with a friend who has CFS as well.
Thank you❤
Thank you for sharing this side of your life. As someone who has an invisible disability. It's very hard to accept and I tend to compare myself to my 'healthy' friends that get to do everything. But acceptance is really the most important part to any disability.
Thank you so much! Couldn't explain it better and every time I need to get someone to understand I'm going to point them to this video X
I am so proud of you, this must be so scary to share!
I had Lymes at the beginning of the year, not even close to what you experience but the main symptom is extreme tiredness, I remember crying on the couch because I was too exhausted to go to the shop. You're doing amazing, don't let your brain or anyone else tell you otherwise.
Thank you thank you THANK YOU for this video 🙌🏼you summarised what it's like to live with CFS so well !! I have had very similar experience to you and it is so nice to hear someone's story and to feel a little less alone in this xx
this was a really insightful video and i love the way you executed it, thank you
This is such a brave, fantastic and informative video - thank you. Hearing real people share real experiences touches so many hearts, mine included, and helps raise awareness. You are such a strong person for being willing to share this, and an awesome teacher (the spoon analogy is perfect), again, thank you and sending joyful hugs your way!
Thank you for sharing this! Not only ME/CFS but also other illnesses will be understood better due to such videos.
I was often tired and had to sleep a few hours in the middle of the day due to chronic abdominal pain, but it got better and if it hits me again, it's only for a few hours that I feel heavy (which was just yesterday so that I didn't manage to watch this video). It must be hard to feel kind of like this and more for much more time...
My daughter has MeCFS. Thanks for helping to educate the world on this.