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 TH-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’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
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 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. 😊
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! 💓
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 ❤
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!
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!!
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
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 ❤️
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 ♥️
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
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 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 🙃
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.
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.
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 ❤
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
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. 💜💙🦓
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. 😊
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'm so sorry this is happening to you. As someone who has Long Covid I have many of the same struggles you have spoken about. Thank you so much for telling your story and helping spread awareness of chronic illnesses and their devastating effects.
long covid is considered ME/CFS if it lasts longer than 6 months. They are essentially one and the same. Sorry you are suffering too. I have moderate ME/CFS...have to use a wheelchair to get around.
Yup, they are same thing. Likely to be connective tissue disorders suddenly worsened by an infection. Whether the POTS and other autonomic dysfunction is really fundamentally autoimmune or those markers are just another secondary link in the chain isn’t very clear - many people have such severe issues with ligaments and the cervical spine that any inflammation causes brain stem compression, but I’ve also recently read that the problem could also be caused by the connective tissue throughout the brain experiencing a flare-up.
I have long COVID too with similar symptoms and it worries me that the NHS has never mentioned ME to me and has continuously told me that I will get eventually better....
@@imblanck they are generally clueless. Few specialists know much about these conditions and no therapy is as yet considered proven, therefore state-funded systems won’t usually offer much. You might benefit from looking at Gez Medinger’s work. Medications that help include LDN, LDA and Fluvoxamine, but I’m not recommending them - just recommending looking them up and the ideas surrounding their use for ME and other post viral conditions.
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 thought you were talking about fibromyalgia initially because I can relate to so much of this. I was diagnosed on the winter solstice and I started using a cane to manage my energy levels, and it has helped so so much. Thanks for sharing this. I'm doing my PhD on disability fiction and I've learned so much about other disabilities as a result. We are treated so poorly by abled people so often, because they just don't understand. I think they're also scared, because anyone can become disabled at any time. I was born disabled (cerebral palsy) but still went through a grieving process acquiring fibromyalgia. I think it's brilliant you've posted this. 💚
im sorry you're struggling! there's a lot of overlap between CFS and fibromyalgia so we probably have a lot in common in terms of our experience. I'm so glad you found something that helps you manage your spoons better. It's so exciting that you're doing a PhD, especially when it's on disability function!! thank u for sharing
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 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
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'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 have lupus and other autoimmune and chronic illnesses plus adhd and I’m so happy to see you be open about your struggles🥺❤️I’ve watched you for years and seeing people I admire have similar experiences to me as awful as it is makes me feel less alone I’m really sick with mine couldn’t finish education and now can’t work and it just needs more awareness
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
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 :)
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.
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. ❤
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
I'm lucky enough not knowing what conditions like this feel like, so I don't know what would be appropriate to say. So I'm just gonna send you and everyone elses a lot of love, a hug, and a little hope that someday something will change and people will start to realize things like invisible disabilities exist, and who knows, maybe one day a cure will also come 💚
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 😢
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. 💙
The moment you started explaining the symptoms it was an instant oh no. My sister got diagnosed with this just a few months ago, she's 17 and it's driving everybody up the walls because shes already two years behind in school because shes simply always in pain and always too tired to go to school. Watching you deal with it makes me fear for her future because she has autism on top of this too
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 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
i got diagnosed when i was 12. i missed two years of school and lost most of my friends. people said i was faking it, or that i'm lazy. they said "yeah i get tired too" or "i think i must have cfs as well" without knowing what that really means. thanks for spreading awareness.
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!
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.
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 was finally diagnosed in 2018 with Fibromyalgia, in 2021 I caught covid and once again the pain became so much I’ve never recovered. I’m exhausted, I hurt, I’m grouchy, and can only give so much. I have 3 kids and a husband. They depend on me and seeing their disappointment when I just can’t do something breaks my heart. I’m only 35 but I feel 65. It’s hard
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.
Just have to say, thank you for talking about your chronic illness and spreading awareness on your platforms. I’ve also been suffering with MECFS for over a year, and you rarely hear people talk about it. It can be really tough but I hope you have more good days than bad over time. I know how much it can fluctuate. It helps knowing I’m not alone fighting this illness 💜
I suffer from depression and fight to get out of bed everyday. I know is not the same, cuz is on my head, but hearing that somebody struggles to live a normal life, well encourages me to be ok and to ge up and put one foot in front of the other with gratitude for being able to do so and love and compassion for those who can. Thank you for sharing.
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
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.
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 ME/CFS. I was diagnosed after 5+ years of extreme fatigue in my early 20s. I knew that I should not feel as bad as I did that young. Turned out that I had the markers for the Epstein-Barr Virus (aka: mono) and never even knew I had had mono itself. Learning to live with this over the last 25 years has been a challenge. Somedays I can concur the world - and do - but those days I pay for dearly by ending up barely functioning for a week. Kudos to you for sharing your experience. Talking about it will bring so much awareness. And this video was so good at showing the realities of what it looks like to have ME/CFS.
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 for sharing this! It's not exactly the same, but I can relate to some extent, having hypersomnia. This means I'm essentially always tired regardless of how much I sleep. It took me over 10 years to finally push to have it looked at (I got a few dismissive answers when I talked to my doctor years ago). Now I've got meds that help me stay awake, and even though they only last a couple of hours per day, it's been a game changer.
Ouch. That seems like it is NO FUN. Glad I don't have that. I have occasional depression. Sometimes I can be pretty useless. But I can pull myself back to the surface by remembering what I live for. To just be stuck, helpless. That would be a hard thing for me. You have family that loves you very much. That is the best blessing. What a wild video. Never knew that about you. Glad you make it work. 👍
Hugs. We use spoons to explain my husband's ability after TBI too. Appreciate you bringing awareness. "Invisible" disabilities are difficult in so many ways.
When you were describing your symptoms I was like that sounds like ME/CFS. I was wheelchair and bedbound, I'm slowly learning my body and condition and able to do a bit more. I'm following CFS Health on TH-cam and they're amazing at helping you understand and deal with and possibly treat symptoms:) My heart is breaking that you're also suffering. So many more people have this debilitating condition than you realise ❤
I was diagnosed with ME at 18, I'm 32 now. I spent a couple of years with moderate-severe symptoms, and really focused in on pacing so i got to mild-moderate. I too delayed university, and graduated at 26 with a 1:1(Hons) BA. I have worked part time my entire working life as full time is too much, but I've still managed to build a career. My symptoms improved a lot during and after pregnancy, and my daughter is almost 5. I've also been diagnosed with ADHD in the past 2 years and find that I have fewer crashes now that I'm medicated and my brain isn't so exhausted. It's hard missing events and not being able to run and do active play etc for fear of pain or causing a flare up. Things are so much better than they were and I'm grateful for the limited energy I do have.
I have fibromyalgia coupled with ADHD, and major depressive disorder. I’m constantly in pain, and consistently exhausted. But for me, I can’t just sleep. Because while my depression and fibro need the sleep, my adhd can’t chill out enough to get what I need. I was only diagnosed with these things in the last year and a half, and I still feel like I’m drowning most of the time. It’s nice to see someone I follow and admire be open and honest about their struggle as it makes me feel like I’m not alone. Thank you Ell for being so open and sharing your struggles so that those of us who are doing their best feel like they’re not alone ❤
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
Let me start by saying thank you for making this video. Not just because you explain something about yourself, but also because you bring awareness to the world about issues most people will never know about. I really like the way you made it in parts. Showing exactly how fragmented a day gets when you're low on spoons, but HAVE to do some things. -- To people who can get triggered easily: probably best to not read on. -- Don't say I didn't warn you. I know how it feels. No, I don't have ME, I have asthma, ASD, depression and PTSD. I've heard mention of the spoons, but never got it explained. It makes perfect sense though. A clear analogy. I HAD to reply to this Today I woke up with two spoons, at most. Spent at least 8 already, and the day isn't over yet. You don't get to "recover" spoons by not using them the next day. Gone is gone. And what makes it worse: I'm alone. Just me and my dog. My dog is my life, but she's not going to be in my life for too much longer. She's almost 14. Last month she had a stroke, and it left some issues that won't heal. No serious issues that are life threatening, or making her quality of life worse, but they make me worry more. Due to my ASD and PTSD I can't even make phone calls. If anything goes wrong, I can send a text to friends, hoping they read it and they can help. Can't even call a doctor if my life depends on it. What makes today worse? Let's just say it "should" be a day of celebration. But when you're ALWAYS sick and alone, it's anything but. Got reminded that I'm alone, that my entire family cast me out, that I only have a handful of friends, and that I'll never EVER be able to work and afford normal food ever again. It's been this way for years now, with no hope that it'll get any better at all. Why am I posting this? I don't know. I honestly don't know. Watching the video, I was just compelled to do this. I'm all out of spoons. For years. Pretending there are still one or two left, putting on a mask, "just keep fighting". And I can't do it. I just can't. I don't know why I'm even trying. Why I'm typing this, knowing that it's nobody's concern but mine. I don't know.
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!
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
I'm not a subscriber, in fact I've never seen your channel before. But it popped up in my recommended and I felt like I should watch it. I just wanted to say thank you for sharing your story. It taught me a lot about ME, I've not been ignorant in the sense that I didn't believe it was real, but I'd also never looked up what the condition entails, so this video was very informative and taught me a lot. I hope you have many days filled with an abundance of spoons in the future!
This is very relatable.. about 8 years ago i started getting sick constantly and ended up with mono which the symptoms hit hard for a year. I ended up experiencing cfs, new allergies, blood sugar problems, debilitating migraines and lots of inflammation problems. My immune system just never bounced back.. I am a very outgoing adventure type but it becomes hard to keep up with everyone and everything all the time. I also understand the struggles with invisible illness and not wanting to talk about it with others out of fear of judgement. Just know you are not alone.❤
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 sharing this! My Mum has been living with this for the last 20 years. I was worried my son was dealing with the same thing. So far it looks like he "only" had very deep fatigue from various sensory overloads. He's still not able to work, but is able to enjoy his hobbies more now. All the best with whatever you need to do from day to day!
Thank you for this video, from the bottom of my heart. I believe I have CFS, but because I am plus sized I am constantly told be doctors it ismy weight with absolutely no evaluation. I feel very validated by the information in this video. I didn't know pain could be part of a flare up- and for the last 6 years my entire left side has been in near constant pain. Some days manageable, other days *crippling*. hopefully, learning more from others with this condition will arm me with the language I need to get seen and care from medical professionals. But if not, at least I know I am not alone. and that is worth quite a lot.. so again thank you.
I was diagnosed with ME at 13 and was practically kicked out of school because of it. 21 now and starting university soon! Thank you for giving such a big insight on what this invisible illness is. I wish there was more being said about it so I could have had a better chance at school. You’re an amazing person Elena ❤ sending love
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.
A lot of people I know pass out (food coma) if they eat. Try just drinking water all day, then eat a small meal before bed. If you snack during the day, make sure it's not something that zaps all your energy. I have found that a few sips of lemonade and some beef jerky is all I can take, or I will pass out. Also, don't just eat what sounds good. Only eat based around energy. Too much, or too little.
Thank you for sharing. Invisible illnesses need to be talked about more. This is why I try to remember that someone could be having a bad day, but we don't see all the things that have lead to that moment and some of it could be due to health. I have long covid. It is upsetting not being able to do all the things I use to do. I rarely was home during the summer as I was out and about running or walking, taking my children to parks or friends' house for playdates. Now I am lucky to be able to some of the things I used to do as well as being in chronic pain from several health issues. It is draining, stressful, and upsetting.
Having narcolepsy with cataplexy, I can relate to some of the things you go through. I fall asleep at least once every day at work and it's worse on stressful, frustrating days. Making people laugh also triggers sleep so I take antidepressants to help regulate my emotions. As a child, I frequently had sinus infections. Turns out, those infections got to my brain and caused my narcolepsy. Found out recently that people have died from sinus infections reaching the brain. I was dumbfounded when I found out.
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
Thank you for this video I have suffered from what no one can figure out for years my daughter sent me this video and EVERYTHING you said was me exactly only I've had to learn to cope on my own since 2014 when it started extremely slowly and each year I've been functional less and less. I know the way you explained your story will help so many and I plan to show it to my doctor because you explained things perfectly! ❤❤❤
This must've been very hard to share. Thank you for spreading awareness. The symptoms sound similar to chronic Lyme disease, which I had for 7 years. I was sick, so incredibly sick, but nobody believed me because I still went to school, volunteered, did my chores at home, went to outings, etc. But when I was alone, I couldn't stand putting up a front anymore and all I did was lay down and cry because of how much pain I was in. I didn't tell anyone besides my family and a few close friends, and they thought I was just being "dramatic" and a "hypochondriac," even on days where my joints hurt so badly that I couldn't walk from my bed to the bathroom without crying. The worst part about being chronically ill isn't the illness itself, it's everyone else's reaction to you being sick, especially when all the people around you ridicule and judge you. I'm thankful that I made it out on the other side of my illness with minimal repercussions, I know most people who deal with a disease as severe as Lyme can't say the same. Let's all keep spreading awareness about these very real life situations to let people know that they're not alone if they're dealing with something similar.
I also have ME/CFS from flu 8 years ago. It cycles with being what feels normal and flares up for a few weeks to months at a time. It has got better over the years with the odd relapse every few years. I have been having B12 injections every 3 months and this has really helped. If you can get through to an ME/CFS clinic then do it, i waited 18 months and it really helped, it was more about recognising the triggers and how to manage it, resting daily to be proactive rather than reactive. Good luck
I'm currently undiagnosed, I have 6 spoon days every day. I don't get the good days when I'm back to who I was but I also don't have the extreme days when I can't get out of bed. Thankyou for making this video.
Thank you so much for sharing. It's brave telling the world you have an illness, especially if it's 'invisible'. I have Fibromyalgia which can be quite similar. My worst symptom for me personally is the chronic fatigue. I was diagnosed when I was around 23/24 years old but I'm sure I had it earlier. It's very hard to explain to colleagues and others that sometimes you just can't do things. I often feel like a burden, especially at work as some people just think I'm being lazy. Also, pacing yourself at social events is tough and I always need a day to recover afterwards. I'm glad that you've come to terms with it, even tho we never really do. I'm also glad you have family to support you, mine are also a blessing
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 TH-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’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 .
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.
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. 😊
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! 💓
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 🥺💚
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!
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!!
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 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 :)
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 ❤️
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 ♥️
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
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 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 🙃
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.
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.
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 ❤
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
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. 💜💙🦓
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. 😊
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'm so sorry this is happening to you. As someone who has Long Covid I have many of the same struggles you have spoken about.
Thank you so much for telling your story and helping spread awareness of chronic illnesses and their devastating effects.
long covid is considered ME/CFS if it lasts longer than 6 months. They are essentially one and the same. Sorry you are suffering too. I have moderate ME/CFS...have to use a wheelchair to get around.
Long COVID can actually cause autoimmune issues. Two of my friends have POTS like issues now from it.
Yup, they are same thing. Likely to be connective tissue disorders suddenly worsened by an infection. Whether the POTS and other autonomic dysfunction is really fundamentally autoimmune or those markers are just another secondary link in the chain isn’t very clear - many people have such severe issues with ligaments and the cervical spine that any inflammation causes brain stem compression, but I’ve also recently read that the problem could also be caused by the connective tissue throughout the brain experiencing a flare-up.
I have long COVID too with similar symptoms and it worries me that the NHS has never mentioned ME to me and has continuously told me that I will get eventually better....
@@imblanck they are generally clueless. Few specialists know much about these conditions and no therapy is as yet considered proven, therefore state-funded systems won’t usually offer much. You might benefit from looking at Gez Medinger’s work. Medications that help include LDN, LDA and Fluvoxamine, but I’m not recommending them - just recommending looking them up and the ideas surrounding their use for ME and other post viral conditions.
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 thought you were talking about fibromyalgia initially because I can relate to so much of this. I was diagnosed on the winter solstice and I started using a cane to manage my energy levels, and it has helped so so much. Thanks for sharing this. I'm doing my PhD on disability fiction and I've learned so much about other disabilities as a result. We are treated so poorly by abled people so often, because they just don't understand. I think they're also scared, because anyone can become disabled at any time. I was born disabled (cerebral palsy) but still went through a grieving process acquiring fibromyalgia. I think it's brilliant you've posted this. 💚
im sorry you're struggling! there's a lot of overlap between CFS and fibromyalgia so we probably have a lot in common in terms of our experience. I'm so glad you found something that helps you manage your spoons better. It's so exciting that you're doing a PhD, especially when it's on disability function!! thank u for sharing
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 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
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.
Im so proud of you for fighting through this!
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 have lupus and other autoimmune and chronic illnesses plus adhd and I’m so happy to see you be open about your struggles🥺❤️I’ve watched you for years and seeing people I admire have similar experiences to me as awful as it is makes me feel less alone I’m really sick with mine couldn’t finish education and now can’t work and it just needs more awareness
I was diagnosed with Fibromyalgia in 2010. I felt this so hard. Sending you love. 💙
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 a fellow disabled person who use spoons, you have my deepest support ❤
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 :)
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.
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. ❤
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
I'm lucky enough not knowing what conditions like this feel like, so I don't know what would be appropriate to say. So I'm just gonna send you and everyone elses a lot of love, a hug, and a little hope that someday something will change and people will start to realize things like invisible disabilities exist, and who knows, maybe one day a cure will also come 💚
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 😢
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. 💙
The moment you started explaining the symptoms it was an instant oh no. My sister got diagnosed with this just a few months ago, she's 17 and it's driving everybody up the walls because shes already two years behind in school because shes simply always in pain and always too tired to go to school. Watching you deal with it makes me fear for her future because she has autism on top of this too
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 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
i got diagnosed when i was 12. i missed two years of school and lost most of my friends. people said i was faking it, or that i'm lazy. they said "yeah i get tired too" or "i think i must have cfs as well" without knowing what that really means. thanks for spreading awareness.
I have chronic migraines. I relate to thus so much. Thank you for shining light on people suffering from a chronic illnesses ❤
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!
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.
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 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 was finally diagnosed in 2018 with Fibromyalgia, in 2021 I caught covid and once again the pain became so much I’ve never recovered. I’m exhausted, I hurt, I’m grouchy, and can only give so much. I have 3 kids and a husband. They depend on me and seeing their disappointment when I just can’t do something breaks my heart. I’m only 35 but I feel 65. It’s hard
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.
Just have to say, thank you for talking about your chronic illness and spreading awareness on your platforms. I’ve also been suffering with MECFS for over a year, and you rarely hear people talk about it. It can be really tough but I hope you have more good days than bad over time. I know how much it can fluctuate. It helps knowing I’m not alone fighting this illness 💜
Thank you so much for sharing, from someone with Long Covid things like this NEED to be seen
I suffer from depression and fight to get out of bed everyday. I know is not the same, cuz is on my head, but hearing that somebody struggles to live a normal life, well encourages me to be ok and to ge up and put one foot in front of the other with gratitude for being able to do so and love and compassion for those who can. Thank you for sharing.
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
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.
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 ME/CFS. I was diagnosed after 5+ years of extreme fatigue in my early 20s. I knew that I should not feel as bad as I did that young. Turned out that I had the markers for the Epstein-Barr Virus (aka: mono) and never even knew I had had mono itself. Learning to live with this over the last 25 years has been a challenge. Somedays I can concur the world - and do - but those days I pay for dearly by ending up barely functioning for a week. Kudos to you for sharing your experience. Talking about it will bring so much awareness. And this video was so good at showing the realities of what it looks like to have ME/CFS.
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 for sharing!
Oh I saw your IG story about this.
Feel better!
So inspiring how you're absolutely crushing it still ✨️
ugh this is heartbreaking im so sorry you go through this. invisible disabilities like this are so hard. 😞 im glad you shared though!
Thank you for sharing this! It's not exactly the same, but I can relate to some extent, having hypersomnia. This means I'm essentially always tired regardless of how much I sleep. It took me over 10 years to finally push to have it looked at (I got a few dismissive answers when I talked to my doctor years ago). Now I've got meds that help me stay awake, and even though they only last a couple of hours per day, it's been a game changer.
Ouch. That seems like it is NO FUN.
Glad I don't have that.
I have occasional depression. Sometimes I can be pretty useless.
But I can pull myself back to the surface by remembering what I live for.
To just be stuck, helpless. That would be a hard thing for me.
You have family that loves you very much. That is the best blessing.
What a wild video. Never knew that about you.
Glad you make it work.
👍
Hugs. We use spoons to explain my husband's ability after TBI too. Appreciate you bringing awareness. "Invisible" disabilities are difficult in so many ways.
Thank you for speaking about your struggles. We all wish you the best.
When you were describing your symptoms I was like that sounds like ME/CFS.
I was wheelchair and bedbound, I'm slowly learning my body and condition and able to do a bit more.
I'm following CFS Health on TH-cam and they're amazing at helping you understand and deal with and possibly treat symptoms:)
My heart is breaking that you're also suffering. So many more people have this debilitating condition than you realise ❤
I was diagnosed with ME at 18, I'm 32 now. I spent a couple of years with moderate-severe symptoms, and really focused in on pacing so i got to mild-moderate. I too delayed university, and graduated at 26 with a 1:1(Hons) BA. I have worked part time my entire working life as full time is too much, but I've still managed to build a career. My symptoms improved a lot during and after pregnancy, and my daughter is almost 5. I've also been diagnosed with ADHD in the past 2 years and find that I have fewer crashes now that I'm medicated and my brain isn't so exhausted. It's hard missing events and not being able to run and do active play etc for fear of pain or causing a flare up. Things are so much better than they were and I'm grateful for the limited energy I do have.
I have fibromyalgia coupled with ADHD, and major depressive disorder. I’m constantly in pain, and consistently exhausted. But for me, I can’t just sleep. Because while my depression and fibro need the sleep, my adhd can’t chill out enough to get what I need. I was only diagnosed with these things in the last year and a half, and I still feel like I’m drowning most of the time. It’s nice to see someone I follow and admire be open and honest about their struggle as it makes me feel like I’m not alone. Thank you Ell for being so open and sharing your struggles so that those of us who are doing their best feel like they’re not alone ❤
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
Let me start by saying thank you for making this video. Not just because you explain something about yourself, but also because you bring awareness to the world about issues most people will never know about. I really like the way you made it in parts. Showing exactly how fragmented a day gets when you're low on spoons, but HAVE to do some things.
-- To people who can get triggered easily: probably best to not read on. --
Don't say I didn't warn you.
I know how it feels. No, I don't have ME, I have asthma, ASD, depression and PTSD. I've heard mention of the spoons, but never got it explained.
It makes perfect sense though. A clear analogy.
I HAD to reply to this
Today I woke up with two spoons, at most. Spent at least 8 already, and the day isn't over yet.
You don't get to "recover" spoons by not using them the next day. Gone is gone.
And what makes it worse: I'm alone. Just me and my dog. My dog is my life, but she's not going to be in my life for too much longer. She's almost 14. Last month she had a stroke, and it left some issues that won't heal. No serious issues that are life threatening, or making her quality of life worse, but they make me worry more.
Due to my ASD and PTSD I can't even make phone calls. If anything goes wrong, I can send a text to friends, hoping they read it and they can help. Can't even call a doctor if my life depends on it.
What makes today worse? Let's just say it "should" be a day of celebration. But when you're ALWAYS sick and alone, it's anything but. Got reminded that I'm alone, that my entire family cast me out, that I only have a handful of friends, and that I'll never EVER be able to work and afford normal food ever again. It's been this way for years now, with no hope that it'll get any better at all.
Why am I posting this? I don't know. I honestly don't know. Watching the video, I was just compelled to do this.
I'm all out of spoons. For years. Pretending there are still one or two left, putting on a mask, "just keep fighting".
And I can't do it. I just can't.
I don't know why I'm even trying. Why I'm typing this, knowing that it's nobody's concern but mine. I don't know.
❤
I care.X
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!
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
I'm not a subscriber, in fact I've never seen your channel before. But it popped up in my recommended and I felt like I should watch it. I just wanted to say thank you for sharing your story. It taught me a lot about ME, I've not been ignorant in the sense that I didn't believe it was real, but I'd also never looked up what the condition entails, so this video was very informative and taught me a lot. I hope you have many days filled with an abundance of spoons in the future!
This is very relatable.. about 8 years ago i started getting sick constantly and ended up with mono which the symptoms hit hard for a year. I ended up experiencing cfs, new allergies, blood sugar problems, debilitating migraines and lots of inflammation problems. My immune system just never bounced back.. I am a very outgoing adventure type but it becomes hard to keep up with everyone and everything all the time. I also understand the struggles with invisible illness and not wanting to talk about it with others out of fear of judgement. Just know you are not alone.❤
This was such an excellent video. You provided so much information in such a relatable way. You are incredibly talented.
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 sharing this! My Mum has been living with this for the last 20 years. I was worried my son was dealing with the same thing. So far it looks like he "only" had very deep fatigue from various sensory overloads. He's still not able to work, but is able to enjoy his hobbies more now. All the best with whatever you need to do from day to day!
Thank you for this video, from the bottom of my heart. I believe I have CFS, but because I am plus sized I am constantly told be doctors it ismy weight with absolutely no evaluation. I feel very validated by the information in this video. I didn't know pain could be part of a flare up- and for the last 6 years my entire left side has been in near constant pain. Some days manageable, other days *crippling*. hopefully, learning more from others with this condition will arm me with the language I need to get seen and care from medical professionals. But if not, at least I know I am not alone. and that is worth quite a lot.. so again thank you.
I was diagnosed with ME at 13 and was practically kicked out of school because of it. 21 now and starting university soon! Thank you for giving such a big insight on what this invisible illness is. I wish there was more being said about it so I could have had a better chance at school. You’re an amazing person Elena ❤ sending love
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.
A lot of people I know pass out (food coma) if they eat. Try just drinking water all day, then eat a small meal before bed. If you snack during the day, make sure it's not something that zaps all your energy. I have found that a few sips of lemonade and some beef jerky is all I can take, or I will pass out. Also, don't just eat what sounds good. Only eat based around energy. Too much, or too little.
Thank you for sharing. Invisible illnesses need to be talked about more. This is why I try to remember that someone could be having a bad day, but we don't see all the things that have lead to that moment and some of it could be due to health.
I have long covid. It is upsetting not being able to do all the things I use to do. I rarely was home during the summer as I was out and about running or walking, taking my children to parks or friends' house for playdates. Now I am lucky to be able to some of the things I used to do as well as being in chronic pain from several health issues. It is draining, stressful, and upsetting.
My daughter has MeCFS. Thanks for helping to educate the world on this.
Having narcolepsy with cataplexy, I can relate to some of the things you go through. I fall asleep at least once every day at work and it's worse on stressful, frustrating days. Making people laugh also triggers sleep so I take antidepressants to help regulate my emotions. As a child, I frequently had sinus infections. Turns out, those infections got to my brain and caused my narcolepsy. Found out recently that people have died from sinus infections reaching the brain. I was dumbfounded when I found out.
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
Thank you for this video I have suffered from what no one can figure out for years my daughter sent me this video and EVERYTHING you said was me exactly only I've had to learn to cope on my own since 2014 when it started extremely slowly and each year I've been functional less and less. I know the way you explained your story will help so many and I plan to show it to my doctor because you explained things perfectly!
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This must've been very hard to share. Thank you for spreading awareness. The symptoms sound similar to chronic Lyme disease, which I had for 7 years. I was sick, so incredibly sick, but nobody believed me because I still went to school, volunteered, did my chores at home, went to outings, etc. But when I was alone, I couldn't stand putting up a front anymore and all I did was lay down and cry because of how much pain I was in. I didn't tell anyone besides my family and a few close friends, and they thought I was just being "dramatic" and a "hypochondriac," even on days where my joints hurt so badly that I couldn't walk from my bed to the bathroom without crying. The worst part about being chronically ill isn't the illness itself, it's everyone else's reaction to you being sick, especially when all the people around you ridicule and judge you. I'm thankful that I made it out on the other side of my illness with minimal repercussions, I know most people who deal with a disease as severe as Lyme can't say the same. Let's all keep spreading awareness about these very real life situations to let people know that they're not alone if they're dealing with something similar.
I also have ME/CFS from flu 8 years ago. It cycles with being what feels normal and flares up for a few weeks to months at a time. It has got better over the years with the odd relapse every few years. I have been having B12 injections every 3 months and this has really helped. If you can get through to an ME/CFS clinic then do it, i waited 18 months and it really helped, it was more about recognising the triggers and how to manage it, resting daily to be proactive rather than reactive. Good luck
I'm currently undiagnosed, I have 6 spoon days every day. I don't get the good days when I'm back to who I was but I also don't have the extreme days when I can't get out of bed. Thankyou for making this video.
I never Heard of spoons before, but it sounds similar. Between 4 and 8 in any given day...
Thank you so much for sharing. It's brave telling the world you have an illness, especially if it's 'invisible'. I have Fibromyalgia which can be quite similar. My worst symptom for me personally is the chronic fatigue. I was diagnosed when I was around 23/24 years old but I'm sure I had it earlier. It's very hard to explain to colleagues and others that sometimes you just can't do things. I often feel like a burden, especially at work as some people just think I'm being lazy. Also, pacing yourself at social events is tough and I always need a day to recover afterwards. I'm glad that you've come to terms with it, even tho we never really do. I'm also glad you have family to support you, mine are also a blessing