Living With Chronic Fatigue Syndrome (CFS/ME) - 11 Years Since First Symptoms
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- čas přidán 27. 08. 2024
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haha wow what happened at the end. i hate editing software. rip me.
what the ending is supposed to say:
"but just be aware that they may need to take more breaks, they might be out of breath, just please don't call them "unfit" or "lazy", it's very very hurtful. anyway, thank you so much for watching, i will be back soon with more videos hopefully. let me know what you would like to see in the comments and as always guys i shall catch you later."
oh noo i just got to the end as well
Food is good
Emma I'm so glad you talked about this. I dont have this illness but I know people that do so now I have a better understanding. Thank you and much love from deep in the states living in misery oops I meant Missouri
Not sure what software you're using but I found whatever vids I edited in premiere or aftereffects the ends would always cut off so I had to really draw endings out before cropping them. I would love to know why this is or what causes this issue in rendering...
Eppychu Hello, just wondering if you’re work area end marker is pulled to the correct time stamp if not that could be causing the issue of endings being cut short or a lot of black space at the end. It could also be that the video imported is too long for the duration that was put in the composition settings. Otherwise I found rendering is best done with adobe media encoder where you can make sure all settings are right before rendering. Have a great day and I hope it helps! :)
She finally named the McRestauraunt that she previously couldn't name for certain McLegal McReasons
I’m sure she has mentioned it before 🤔
😂😂😂👏 I remember watching that video YEARS AGO.. I’m glad we’re still here!
Maryam allison same
😂😂😂
It's been a long ass time since I've watched emma, idk why
well i hope you'll return to watching me more often!
@@emmablackery in my case, youtube just completely stopped showing me your videos, idk why. Then one of these days I was cleaning up my subscription list and I was like "wow, Emma Blackery". So I'm back, hi!
You don't seem to pop up in my subscription feed until a day or two later, and sometimes not at all. There's a few channels that seem to do that, it's kind of annoying. Be nice if youtube could stop fucking around with it ey.
@@emmablackery Same though.
@@emmablackery This is the first video recommendation I've seen of you in over a year. Been subscribed since 2012 and it's been 3 years of the algorithm suppressing you. I don't think you can entirely blame yourself for the channel's decline. Fuck CZcams.
I remember watching your original CFS video and commenting something about how I might have CFS even though I also have depression. it turns out I have lyme disease! that video definitely helped me keep pushing for a diagnosis. I just had a feeling that something was off. thank you emma.
I'm so glad you got a correct diagnosis! I know from internet friends that Lyme is so difficult, but I know it's so frustrating to have an undiagnosed illness. Awesome that Emma's video helped you keep pushing for the right diagnosis.
@@jessicab7059 thank you for your kind words
How did you managed to get a diagnosis? Where do you live please? I've told them at the doctors that I was bitten by a tick when I was around 19 (now 29) and they don't take me seriously. I'm in the UK. Thinking they don't believe me or something. I know it was a tick 100% because I had to remove it with tweezers and part of it was left there and it was disgusting. I think I even had the lyme rash which appeared afterwards. My mum thinks she remembers I had the rash also. My fatigue is getting worse. I can't work. Everything takes so much energy.
@@christinagrant3252 my gp happened to be bartonella literate. see if you're able to find a lyme literate or bartonella literate doctor near you. most traditional practitioners are not up to date on the research regarding these types of infections.
@@nintando Thanks for the reply. Oh okay, so I should go private?
I have CFS too, early diagnoses (being a young child) and it’s just kinda comforting to see someone with a platform talking about it. I’m 20 and still struggle with it despite having it for like 17 years. Thank you for spreading some sort of awareness about this illness 🖤
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
@@evelinel.9827 You mean that program that costs thousands of pounds, and have made several people commit suicide? Where you don't have ME/CFS you do ME/CFS. The program that has legally been forbidden to "advertise" toward ME/CFS because it can be extremely dangerous to them? That LP?
I hv recovered by ayurveda . U can have some immunomodulatory herbs . It will help alot.
I’m on year 8 myself had it since I was 20
Me to plus pelvic pain for 26 years now fybromyalgia father had it got over it was thyroid mum has severe ms due to hypomobility Asperger's ocd I've found out
My mum has ME and it’s hard to watch someone change so much. 10 years ago she was able to go out cycling with us, worked 16 hours a day and took us on day trips all the time but now she is in the house 24/7. When she goes out she can barely stay out 3/4 hours without being knackered. Very hard to watch!
:( Same with my mom. Stay strong!
I'm so sorry on your behalf. 😭 As someone with ME/CFS I always feel so guilty to my family who has to care for me... It's gotta be equally if not more difficult for you. ❤😔
Same with my dad - it used to really affect me when I was younger and I was still understanding that it couldn't be helped - Ur not alone !!! ❤️
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
It's hard to experience. Losing yourself. I grieve the person I was every single day. Always grieving the life I could have had.
I've had depression-related fatigue since middle school, so I relate with you a great deal. It's the one symptom that doesn't seem to be helped by medication or anything that (apparently) helps other people (healthy eating, exercise, sunshine, bedtimes, etc.). My doctor basically told me I just had to live with it. It's really hard, especially when my day job is not what I want to be doing with my life, but I need it for money and I have no energy outside of it to work on my career goals.
I had the same, I tried two medications until the third one (escitalopram) helped me. I would not give up and try new medicines, and also make sure there are no deficiencies, especially iron, b-vitamins and d-vitamin. I hope you one day find something that helps :)
Ugh I have CFS and I relate to the career goals thing so hard
you probably did it already specialy if you have fatique - but if you havent - check your iron, zinc, magnesium and vit d levels. Specialy Iron. Even if its in "normal" range , a lot of people need it t be in the optimal to feel good and full of energy. Specialy if you are a woman with heavy periods and or vegan/vegeterian.
Change doctors! You deserve to be taken seriously, you deserve a better answer than "learn to live with it"
i thought my fatigue was depression related but it turned out to be an unrelated condition similar to cfs. it’s tough, it’s hard to find things to help it but i hope you find something
Tell your partner that we think he's amazing, God bless him, sending you tons of good vibes Emma ❤️
wow I can totally relate! I was diagnosed with chronic lyme disease when I was 18 years old. same exact symptoms. I had to drop out of college. I lost all of my friends because no one could really understand what I was going through.
At the time I felt like my life was falling apart. However now at 24 I am happy that I have learned so much about my body and myself.
We are Warriors!! we can do this :)
A friend of mine was diagnosed with CFS when she was 14. She dropped out of school and most people took a "talk to her occasionally" approach. Me and another girl both talked to her on a regular basis and whilst my friend was still enrolled at our school, she rarely turned up. Instead of going to our Year 11 Prom, we got Chinese takeaway with her parents and then the pair of us had an Orlando Bloom movie fest in her room. 'Twas a good night and much better than renting an expensive prom dress, eating an expensive meal, and dancing with people I didn't like. No sarcasm there.
Indi Heaton everyone needs more friends like you
Do you remember seeing the tick, McKenna? How are you doing today?
I hate how some people are like You don’t have anything your just being lazy, I used to fall asleep in school it was embarrassing the teachers thought I was faking to try and be funny and told me of constantly and even my friends who knew about what I had thought I was being lazy and even my own parents when they tell me to get up and be productive and stop being lazy they don’t realise that I would if I could I had change schools because I was embarrassed that people had seen me fall asleep I was the sleepy girl I left school early on many days throughout the week all sorts of things walking up stairs makes me tired it’s good to know someone I love watching I has this and can relate
I'm so glad you have a partner who helps you so much. Knowing someone has your back like that would be such a comfort. He's a good egg.
you’re genuinely one of the most honest genuine people on the internet and you deserve so much more appreciation 🥺
thank you!
TIP: Say "developed it" instead of "contracted it. :)
(That's what I say about my Type 1 Diabetes).
As a cfs sufferer I love seeing you talk about it. We have so little representation. I’m really glad that you are gradually improving.
No way! I was JUST checking an hour ago if u posted something new, in case I missed or didn't get notification, felt it by my heart, love you
i post on patreon frequently! www.patreon.com/emma_blackery
I've had anxiety my whole life, and when I was around 13-14, I started suffering with depression. Those two things together, and all the stress they've put on my body and mind, have caused me to suffer from CFS. I'm 23 in September. It's so dibilitating. I love that someone with as many eyes on them is actually talking about it. Thank you, Emma. This is so relatable for me, because people just don't understand CFS, and to hear someone talk about it so cadidly, and talk about so many of the things that I put myself down for on a daily basis.
I've had CFS/ME since my young teens and I still remember seeing your first video about it. It made me feel so much better knowing someone with a large audience was talking about it. It also helps to see you have still managed to achieve everything you have and not let it stop you.
me: ooo a *new* video
patreon: lol u thought-
As someone who struggled with CFS for 15 years, and had amazing parents who fought tooth and nail for me back when it wasn't as widely recognized, I just want to say thank you for talking so openly and honestly about the condition.
A lot of people still don't know about it or understand it so it makes me happy to see the attention you've helped bring to it.
All the best, keep fighting, it does get better like with me
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
I got CFS after a reaction to going under anaesthetic after an operation, I was diagnosed a year later - I’m at about 55% well but my energy levels are increasing! I’ve started my CZcams to help spread awareness for CFS. Thankyou for using your platform for our needs, it helps us not feel alone 💖
How are you doing now?💕
Meanwhile in the land of insomnia, it can take me anywhere between 2-4 hours to fall asleep... Glad to hear it's getting better, energy-related disorders are no joke!
My mum has chronic fatigue syndrome and it’s definitely real and exhausting. You’re doing great!
I have CFS (11 years diagnosed) and Fibromyalgia (7 years) and honestly heard it all "lazy" "You just need more sleep" "You need less sleep!" "Wish I could laze about in bed all day sleeping!" "it's alright for some!" "I'd love to not work!"
Actually makes me scream, especially the work part - I did work with CFS, which led to another illness which then resulted in having Fibro too, so now I cannot work a normal job because I'm not reliable. I can't tell you how I'm going to feel in ten minutes, never-mind commit to a job - even part time! "You have to work 10-2 on Friday!" ... Friday rolls around and I'm still asleep in bed because my body hasn't heard the alarm and I need to sleep.
I have had alright GP's but when I went to the pain specialist he straight away judged by appearance. Didn't say a word to me, didn't let me speak just straight away "DIET AND EXERCISE!"
Up until a few years ago I was eating mostly a vegan diet - I am now allergic to raw fruit, veggies and nuts, where back then that's mostly what I ate. My diet, okay it could have been better with the right fats, protein etc but it was pretty healthy. My pain and fatigue never changed.
I did exercise, which is HELL! Straight up hell when you're in ridiculous amounts of pain every single moment of every single day, I continued it because I was told "It'll hurt at first but your body will get used to it!" - it never did, it was much worse, in fact I went into a flare up and was in bed for MONTHS afterwards.
Diet and exercise may help some which is great but I hate that that is the first thing people (Not just medical professionals) think.
I'm not the thinnest person out there (Allergic to all the healthy foods and also have coeliac disease and GF food is disgusting for fat and sugar), but I have been thinner, I have exercised, I have eaten healthy, the pain and fatigue I get from those two conditions are no worse now that I am bigger, my diet is unfortunately unhealthier and I can't do more than a 100 steps at a time because PAIN! It's just the same, so I'm made up if these changes DO help people feel better but I wish others wouldn't judge and assume they know. Especially doctors who judge you as you walk through the door, instead of listening.
I'm so sorry this has been your experience. I have CFS/ME and fibromyalgia too, I've been lucky to have a good GP, but I've met with other people in my life who have been dismissive or don't believe me about what I need and it's so painful. I just want to say I see you and I'm so sorry that medical professionals have dismissed and ignored your lived experiences and your own knowledge of your body.
I have interstitial cystitis which basically means I get “attacks” of symptoms of a very severe bladder and kidney infection (with no actual bacterial infection) sometimes for months at a time. It comes on so quickly that I can be sat at my desk right as rain one minute and the next I am doubled over in pain and need to get someone to drive me home. It took me 3 years and as many specialists to get a diagnosis which is relatively short compared to some other people (one doctor told me it was normal for women to feel pain and it was because I was sexually active). Because a lot of people don’t know about it and you can’t physically see it I do feel that people think I am faking my symptoms even though it means that sometimes I will literally spend days going between the bath and the toilet or I have even tried to alleviate the pain to the point where I have had actual burns on my abdomen from hot water bottles. It’s so great to hear you speak about your experience with an invisible illness as I know so many people that suffer and I think the more people that talk about it openly the more people are aware and can start to understand. Also the worst thing people say when I get an attack is “you need to drink more water/have you tried drinking cranberry juice” like I have suffered with this now for 9 years of course I have 😂
IC is actually a symptom of the brain and nervous system and can be healed with mindbody work. Check out the work of Dr. John Sarno and tmswiki.com and all the people who have healed from chronic pain, IBS, Fibro, CFS, IC and more.. Nicole Sachs's discusses IC and pelvic pain in many of her podcast episodes. Her podcast is "The Cure for Chronic Pain."
Eveline L. You’re an ass
I have exactly the same thing! 💗
Emma! It's really important call it ME or myalgic Encephalomyalitis (I know it's a pain). Part of the reason the illness is so stigmatized is because of the name "chronic fatigue". It makes people say "Yea I get tired a lot too" which then leads to people thinking we exaggerate our symptoms. Fatigue is certainly PART of it, but post exertional malaise, severe pain, debilitating cognitive issues, and sometimes FULL immobilization.
That being said, I'm so glad a bigger youtuber like you talk about ME and get the word out. I was diagnosed last year but have had symptoms since 2017 after a really bad bout of mono. I was also fully vegan and working out 6-7 times a week (mostly cross fit and weight training for hours at a time) and I just got worse and worse until I couldn't move and was bedridden for nearly a year. I'm getting "better" but I can't exercise, I've just recently started being able to sit upright for an hour at a time but I need to rest after and I can't clean, cook or walk for more than 10-20 min (absolute max). It's REALLY hard and I'm proud of you for hanging in there. Also, if anyone wants to know about it the movie "Unrest" on Netflix is extremely informative, and may even help people out there with finding out what a family member or friend may be suffering from, without knowing what is going on! ❤
I'm really sorry, but as someone with the condition, I prefer using this term. It allows me to explain the condition without confusing people with MS (that happens) and also to me normalises the fatigue aspect of the condition. It should not be shameful to say 'fatigue'. That's my preference as a sufferer, but I do appreciate what you are saying. I always ensure to discuss my condition in more detail when mentioning it at all, and I know I never leave those I speak to with a flippant impression of its severity. I'm sorry you've experienced it too, and certainly with more severe and constant symptoms than I have. I really hope you understand my choices and you don't think I'm being detrimental. I'm certainly not trying to be.
@@catonakeyboard1132 Ease up turbo, she's not asking others to use CFS just asking them to understand her point of view. Emma was respectful in her response and you comparing this to racism is absurd. Are you trolling?
I got diagnosed with IBS around the same time you posted your earlier video about having CFS and seeing you improve and achieve great things despite your struggles gave me so much hope that it would also get better for me. Five years later and I'm now in my 2nd year of uni despite almost failing high school because of my illness and my symptoms have improved so much. So thank you for being so open about your struggles and giving others hope that it does get better and that struggling with an illness isn't the end of the world.
Well done you for getting the energy to talk about it! My husband has FMS and often struggles with the brain fog brought to explain. Just look after yourself Emma. Always sending love to you. I love how happy you are in yourself- much love to Davey too! ❤️
I have almost recovered from FMS, which was very severe, with the mindbody work of Dr. John Sarno, check out the reviews of his books on Amazon (all the people who have recovered from chronic pain which comes from the brain and nervous system). Also helpful are the Curable App, tmswiki.org. and the podcast "The Cure for Chronic Pain."
Hi Lecosanne!! 😊😊
I remember watching your first video about it, and going to my doctor afterwards, because I had the same symptoms since 2014. But he couldn't find what was wrong. For anyone thinking about going to the doctor because of fatigue, please remember to tell them about ALL of your symptoms at the same time, if you have other. I had symptoms I was a embarrased about, and didn't think had anything to do with my fatigue (cataplexy and hallucinations), which was why my doctor didn't know what was wrong. I finally went to a neurologist in 2018, and they could quickly diagnose me with narcolepsy type 1. There are medicin and lifestyle changes that might be able to help to some extent (unfortunately I didn't react well to any of the medicine).
I saw your original video in 2015, when I was 11. Now I’m 17 with a fresh CFS/POTS diagnosis after suffering for 2 years after traumatic events. I spent those 2 years beating myself up for sleeping all the time and failing school from memory loss. I remember you saying how you just though you were lazy, I resonate with it so much. All I can say is thank you. This gives me hope.
I hope science and medicine can learn and study more about this to help more people.
I am a nurse and see people going though crisis when having worst CFS, it is so disheartening knowing there's nothing I can do to help. Which is my job. So I just sit and listen, so they can unload a bit.
Make tea too, it's a British way to help anything. :)
They probably already have a cure but won't release it to the public just like everything else.
its crazy you still seem so happy and energetic in your videos. i would've never noticed.
I was diagnosed when I was 16, I'm now 24 and I relate to this video very much and you sum up our struggles so well, thank you for that! Hope you're doing well at the moment☺
Thank you for releasing this video, I remember watching your original CFS video years ago. Recently I’ve read several reports of “recovered” covid patients developing CFS/ME. The information/journey you’ve had documenting this illness is very valuable to both new patients and those around them trying to understand the chronic illness. Hopefully the new diagnoses will also lead to further research into CFS due to the increased awareness. I had never heard of allergic reactions causing CFS though I do not doubt you; I did also read that from 7%-13% of people who contract infectious mononucleosis or Glandular fever end up developing CFS which is a terrifying statistic. I hope more research is done on penicillin reactions soon as well since a good amount of CFS sufferers reported symptoms appearing post-allergic reaction to the medication. Thank you for this video and your insight Emma
My mum has CFS since she was in her 20’s after having glandular fever. Doctors are so dismissive of it still and don’t believe it is an actual disease. I had glandular fever when I was 22 and it has taken me a long time to start to feel normal again and I do worry I have CFS. Just got to pass things and not over push myself. Brain fog is horrible but I find meditation helps a lot. Hope a lot more research is done and it is more talked about.
Thank you Emma for talking about it. Stay strong xx
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
Yes, my husband notices when my "face falls down" and he often sends me to rest. I'm so grateful we have a 🚐RVan, so I can sleep in the back on our way for trips. Staying home all the time leads to depression cause there's no variety.
Thank you for talking about this! As someone else with CFS I really appreciate you spreading the word about it.
Thank you so much for making this video. I am currently in the long process of being diagnosed, I am 24 and have been having symptoms since I was 17. I can never talk to anyone about it because they don’t believe it’s real - including doctors or people telling me they’re tired too. It’s so frustrating. It’s nice to know I’m not alone x
So lovely to hear that Davey has learned the signs to look after you ❤ I'm glad you have found ways to manage things a bit. I can't believe your original video was so long ago!
I have CFS too. Got diagnosed last year. My brother has had it for years and had to drop out of school, I'm struggling to go myself. It's comforting to see someone that I look up to talk about this topic! Love you Emma!
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
That's great that it helped you, but please be careful recommending "cures" especially ones with questionable science behind them me-pedia.org/wiki/Lightning_Process. ME has biological markers such as poor mitochondrial function, which is unlikely to be improved by purely behavioural or pyschological treatments. As someone with the illness myself, it's so damaging to keep chasing the magic bullet that will cure you, when there isn't one, so you just keep getting disappointed. A lot of the 'cures' are also really expensive because they're from private practioners, so can put you in financial difficulties
It’s been so long since I watched Emma, but I remember being diagnosed with CFS at age 15 and feeling a little less alone when watching Emma’s videos. I nearly got my Villains CD signed by Emma at an HMV store but I had a massive sleep attack and had to leave. Three years on and I’ve been diagnosed with narcolepsy, I still listen to Emma’s music and can’t wait to start watching again 💖
So happy you’re doing better. There’s definitely a noticeable difference, you seem much happier with your partner and life in general. Wishing you all the best. 💓
I've had chronic fatigue for a few years, and I'm only young. It's really hard, and watching this really helps, thank you.
The mind fog and feeling like your body is going to collapse is daunting, its horrible.
I'm also so sick of hearing, "You're lazy!" and "you need to get more sleep at night!" and something I hear alot, "Eat better and get some exercise!" it's all bs, that does not work. Chronic fatigue is not that, it, well, chronic fatigue.
This is very interesting! Thank you for opening up and telling us about it. I hope it gets better for you!
The connection isn’t with the penicillin reaction. It’s the Glandular Fever. That is the reason you have CFS. Me as well.
I have M.E and watched this with my partner. I think it was really useful for him to hear someone else (someone he has watched in CZcams for some time) describe things I have tried to explain myself, but in a much better way 🤣 getting into a relationship with health problems can be so scary, whilst I want to maintain as much of my independence as possible, there are times I do need some support, even if it is emotional. I think he now gets how much feeling understood with an invisible illness means and whilst we have a way to go, this has really helped explain more of the emotional impact of being ill, that I was struggling to get across myself. Thank you 😊
01:06 "can't take penicillin, or i'll come out in a rash"
Im very to allergic penicillin I almost died when I had some aged 1
Guys it’s a reference to a video Emma did years ago 😂
Brain fog is awful. Mine has been horrendous today. I cant work any more than 14 hours a week as I'm in so much pain and have so much fatigue. When in a flare I can barely walk
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
@@evelinel.9827 well aware of all these things. lightning process does not work for everyone and me/cfs and fibro are so poorly understood its possible there are several similar illnesses grouped together. Its theorised they are the body in prolonged stress responses, mindfulness, stress reduction and slowly increasing activity can help in some people. however flares still happen and recovery is not known to be permanent, you can improve symptoms and reduce flares but they will always happen (from a biomedical scientist)
I used to be able to walk for several hours when I was in a recovery period but I am currently in a flare period
@@lanebreakerRBH You are free to doubt recovery, etc. and I understand that as the symptoms can be so severe and dibilitating. There was a time 2 years ago I was sleeping 4 hours a night, could barely walk around my house, had POTS syptoms, IBS, Migraines on top of the fatigue, brain fog, and pain. However, you can also look into recovery stories. I spent hour upone hour searching down over a hundred recovery stories. The thing that made the biggest difference for me was John El Mokadem's recovery story (and the research study he did where 8 people out of 24 recovered in 16 weeks). Here are his audios, breakthroughthat.com/cfs-audio/ Also the Dr. John Sarno/TMS info has been really helpful also, here is recovery story from this angle, czcams.com/video/ovOnZ6dkL7k/video.html The mindbody work does not make recovery quick or easy, I have worked hard every day for over a year, but I am having many days a week symptom free and it is glorious. I know I will be 100% recovered soon.
Brain fog and fatigue are seriously so debilitating. Sorry you live with them too.
Have you tried any form of exercise? Yoga ?
I remember an older video of yours I watched about CFS and after watching, I did some research into it because I had never heard of it before that video. I can't remember the name of it unfortunately but you are the reason why I was able to get an answer as to what is wrong with me. It was 2011 when I first developed symptoms and it wasn't until 2015 that I actually was able to see a doctor and get it diagnosed.
So it's a bit late but thank you for making videos on CFS and what it actually is and even just letting people know that it exists! Even if you don't end up seeing this comment I feel better for having posted it :D
Thank you so much for making updates on this Emma. It really brings me great comfort to know I'm not alone with this condition and hearing someone else talk about it just as I feel, it really helps. Sometimes I can feel so alone with it I start to question myself and what I'm going through, then when I hear someone like you in the present talking about it it brings me back to the reality that it's not just me and it's real. I don't know if anyone else here feels like that? I really hope you continue to make more content about it if you can. Xx wishing you lots of big energy days :)
Thank you for continuing to share your journey, it's been very interested to follow for all these years. I also get brain fog so it's comforting to know I'm not the only one. I'm glad you're feeling a little better these days 💖
I have suffered myself for 2 and half years, I feel you! ❤️
I have CFS. Will have had it for 10 years this August. Mine was caused by the contraceptive pill. It knocked my immune system right down and I came out of it with CFS and a load of food intolerances.
I'm nowhere near as bad as I was 10 years ago but I still need to sleep 8+ hours to function and still regularly need a nap if I can. I work in theatre and when we have to do 60+ hour work weeks I've noticed I crash harder than my team and I don't get my energy back in the same way that they do after a good nights sleep. I keep forgetting that the reason for that is my CFS!
I really appreciate you speaking out about CFS and bringing more attention to it.
While exactly the same it is highly related. I have had fibromyalgia since I was 14 after a late lyme disease diagnosis. For several years it was unknown why I was always so tired and constantly in pain for no reason. I am 27 now and I completely understand. It is hard to explain why you are so tired from basic tasks or even doing nothing to others.
I completely understand the struggle and no it can be rough. Remember though, stay strong and you got this!!!
You are a warrior. It’s so hard to live with this disease. I only have long covid for 6 months now and it feels like forever.
My wife also has CFS (and now fibromyalgia, which is related), since (guess what) she had glandular fever and was given amoxicillin because *the doctor didn’t think it could be glandular fever, because she was ‘too old’*. She was 40 at the time. And the kicker - you should apparently never have antibiotics like amoxicillin with glandular fever, because it has a bad effect on spleen and liver.
My wife ended up losing her job (she was a psychology teacher) due to a management that couldn’t conceive of long term injuries (unless they were sporting related), and has struggled with mental health difficulties (admittedly only partly due to the CFS) ever since.
All this to say - I sympathise with your struggles - they are real, but are too often dismissed by people, doctors included, because there are no measurable symptoms. In many ways, the average reaction to CFS is similar to the reaction to mental health problems, because there’s nothing obvious and visible to see. Hope your condition improves - 🤞for you that it does.
I am almost recovered from severe CFS and Fibromyalgia. Please have her check out Dr. John Sarno's books (like the Mindbody Prescription) and tmswik.org. CFS and Fibro are problems with the brain and nervous system and can be healed with mindbody work. Also helpful is The Curable App and Nicole Sachs's podcast "The Cure for Chronic Pain."
It was your first ME/CFS video that made me think OH WOW! and everything I had felt for the year before made sense! I’ve now been diagnosed 4 years and I’m doing a lot better but it’s 100% all about know what triggers it so you can stay away from it 🖤 if it hadn’t been for your video I wouldn’t have asked my GP the question
You have Chronic fatigue too I had no idea I’m 11 and it’s really nice to just know that someone I watch a lot has it to, I’m on a really good schedule right now
I'm 14, my mum reckons I had glandular fever (missed the window to get it diagnosed). But I ended up in A&E twice in one week with what my doctors said was tonsillitis. I had to take a whole month off school because of how bad it was. I couldn't eat, drink, speak or do anything without hurting or feeling tired. When I recovered, I returned to school. Only for three days until I crashed and had to take another month off. I took a blood test two days ago (as of typing this) and I've taken nearly a week off because of how much I had done. My mum tries her best to understand, but only sees it as a problem when I've gone out. Only two friends know as they had to bring me to A&E the first time. This video has given me so much hope, thank you so much :)
I have a friend who developed CFS after having an allergic reaction to amoxicillin when she had Scarlett Fever. She had to go to a school for disabled or troubled kids since she could only stay awake up to 4 hours at a time. She's working towards a degree in accounting now at a college in Wales. I'm so proud of her for standing up for herself against the tutors there who insisted that she wouldn't be able to do it bc of her CFS. She's doing so much better now than when we first met 5 or 6 years ago.
Dennis DeYoung of the band Styx contacted CFS after battling a bad viral infection that later led to a disorder that affected his trigeminal nerve that made him sensitive to light and sound. The issues got so bad that he had to stop touring for years. DeYoung did gradually recover and is back touring with his own band.
I know of a few people that got CFS through a viral infection and it took them years to get anywhere near the state before the virus and they still have times when it just hits them, though they get rarer as time goes on.
I hope you recover.
I have fibromyalgia and suspected CFS/ME, I feel this so much. The tired never goes away, no matter how much you sleep
People can recover from ME/CFS (and fibromyalgia) with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
Thank you for being open about your struggles. The more visibility that CFS/ME has, the better. Mine is moderate, but I also have some pretty nasty comorbid conditions which make me quite a bit more disabled. It does look, slowly, that doctors are learning more and more about it - but there's still the struggle with it of even being believed in the first place. I don't think able-bodied people can really even conceptualize the concept of being ill *all the time*. They don't know how it feels, and I guess as a result, some just assume you must be lying.
p.s. what you refer to as a 'fatigue attack' is usually called a 'crash' by the community, as far as I am aware :)
For me I contracted glandular fever at the age of 21, I just never recovered from the extreme fatigue. On top of that I got a whole list of new symptoms which left me unable to function properly at all. I knew I had M.E, I knew it. After dozens and dozens of blood tests and check ups and referrals I was finally officially diagnosed with M.E at the age of 25, just a few months ago. It's nice to have the confirmation and validation of a diagnosis, but it's bittersweet. I had a very bad day yesterday. Very very bad day.
I felt the same with my diagnosis. Relief and also anguish. I hope you have an easier day tomorrow.
@@emmablackery right I'm fangirling big time right now! 👁👄👁
I love you, thank you for using your platform to speak about your experiences with M.E and raising awareness
@@emmablackery I hope you have a great day tomorrow too, may we both miraculously have great energy levels!
Have you seen the documentary on Netflix called Unrest? It's a difficult watch but it made me feel seen
Just wanted to say what a kind, lovely voice you have. Great video that made me feel less alone
i've wondered how you were coping with cfs since the last vid. I have M.E, i've had symptoms for 7 years since i was about 13 and 4 years since i was diagnosed, 2 days after my 16th birthday. I have really down days thinking it's never going to go away. Yet i have also seen people around me improve so much with the illness. Wishing you all the best, from a fellow cfs/m.e sufferer
Honestly, I had never heard of this condition at all! Thank you so much for taking the time to educate us about it.
I've been two years atleast since my first symptoms of CFS. I certainly had much worse days when the symptoms began but thankfully I'm appreciative of people like you who talk about their experiences and I can relate and feel less alone with this condition that even still, my parents don't understand. I'm thankful for your first video you made as it meant I knew what it was when I started recognising my symptoms
My Girlfriend developed CFS as an after effect of glandular fever about 2,5 years ago when we were together for 1 month.
It's way better in the last weeks than at the start.
I try to help her as much as possible and be the best man I can be to make sure she can rest.
But It was quite a journey for me to.
I love this girl.
i was diagnosed when I was 9 years old and I struggled so hard with it - still do to a certain extent. I remember watching your video on your experience and feeling so validated and accepted :) thank you emma
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
when i first saw your video back in 2015 i immediately thought “that’s how i feel” but i had depression and didn’t want to think that it was the same. now, five years later, i’m in a much better place in terms of my depression but am still unfocused, exhausted, and generally worse physically than i should be given my mental state and the exercise i do. i’m gonna go to my doctor soon to talk to her about it 💕
Your original cfs video made me aware of it and was like a revelation to me! I had an allergic reaction to hair dye (face swelled up like yours) and that’s when mine started. It blew my mind and I’m so grateful for you uploading that I was diagnosed at 16 I’m now 20. It was a revelation to me and my family and changed my life and it’s because of your video so thank you
Thank you so much for making this and talking about it, I've had it since just turning seventeen and am now twenty it's so hard to talk about and explain what it's like 💙
Funny enough I contacted glandular fever 10 years and after that I've never been the same. I literally can sleep for England. I'm permanently knackered and struggle to do the things I used to do. Thank you for sharing your story xx
That abrupt ending triggered my OCD 🤣 Love the video though, great message and looking forward to seeing more.
i have it too, i was diagnosed at about 13 and im 17 now. my mum has had it since i was really little so they think its genetic. it sucks and we are both still battling with it. im glad somebody is speaking out and spreading awareness. ❤️
wow i haven't heard of it being genetic - there's so much we still don't know and that's why awareness is important!
Youre a fighter! ❤️
I had to drop out of school, due to CFS, and my home schooling teachers would say they knew when I could no longer learn and take in information, because my skin would also just go grey, and I'd all of a sudden seem flummoxed by maths equations I was doing easily just a few minutes before. Glad you're doing better over all, but know how it feels to still be stuck and have those bad days. Feels reassuring that there finally seems to be more research being done, especially with the UK based one hopefully starting next year, that's going to look into the DNA of CFS suffers vs non CFS suffers.
People can recover from ME/CFS with a mindbody approach as ME/CFS is a problem of the brain and the nervous system (that is why there can be so many symptoms like IBS, pain, tinnitus, headaches, brain fog and more). I am 80-90% recovered from being almost bedridden for 2 years and now I walk 1-2 miles a day. Check out the recoveries of people through The Lightening Process, DNRS, Dr. John Sarno's work, Gupta Program and more. Recovery has been so hard, but easier that being so sick. I have done tons of mediation and emotional work, work on thought patters, learned not to fear the symptoms, learned to not think about the symptoms and it has not been fast or easy but doable!!! ME/CFS is the stress response on overdrive and can be reversed, just not with medicine.
I'm so happy to hear you're getting better with your disease. And I can't imagine what you have to come through to manage all things related to your music career. You are a good example showing that anything's possible, everything is in your hands and you just have to work harder.
Thank you for sharing your experience, I think it's very important for people and especially for those who might have same symptoms of the disease.
I also suffer from CFS due to a bad allergic reaction to a pain killer and I just wanted to say that I really respect that you can put so much effort into your music, As a musician myself I know how hard it is doing gigs and trying to make it in the music industry with this syndrome. I just wish it could be better realised by the public and especially medical professionals, as I sometimes just can't physically function and it's genuinely affecting me pretty badly in day to day life, and yet most people just see it as being lazy or thinking that "all you need is to sleep more"
Also oh my god
That brain fog thing
Jesus I've had that since I was so young
And the eyes oh my god
My eyes literally go grey and green and my skin especially my hands will lose colour when I get fatigued I hate it I look ill
It's not the allergic reaction that caused cfs, its the glandular fever! It's known to have longlasting effects
Glandular fever is one of many viruses that can trigger the onset of ME CFS, but those who are severely impacted by ME CFS, typically have al long history of immune system disfunction such as allergies prior to their decline.
I’ve had chronic migraines for about 12 years now so I totally get this. It sucks to have to cancel last minute, but it’s definitely shown me who my real friends are. Glad to hear you’re improving :)
Oh CFS... It is horrible to live with. School was a nightmare and explaining it to literally anyone is a nightmare. You should never have to convince someone you have a chronic illness. I can relate to every single thing you've had said to you, cause they've been said to me too, so many times. I have been really low with my CFS and then done really good, at the moment I'm in a low again. I've had to miss out on a fair few things in my life so far due to it, but one positive I will say is that you meet some amazing people along the way who can relate to you. Those people, are friends for life, because they will never judge you for canceling plans or falling asleep in the middle of the day, they'll never secretly wonder how tired you really are and they really get you. Sending all my love to you Emma! :)
The actuall cause of my CFS is kind of unknown. But it got bad when I was 16 or so.
Your video actually helped me towards diagnosis years ago. I saw it and brought it up to my doctor at the time and it started a health investigation for me that we found CFS to be a very logical explanation for. 5 years later, I am drained and sad that this will never leave me. The state I live in and the lawyers I've had have been no help with getting me disability for my CFS and many other things I struggle with daily.
its very nice seeing you though, still kicking and creating content even 11 users in. Gives me a lil hope that I can keep it up
This first video really helped me realize my problem with chronic fatigue and my eventual diagnosis with EDS. It was so frustrating bc I didn’t understand why I felt like this but you helped me understand and feel better about my symptoms.
I literally can wake up, be awake for 2/3 hours and feel so tired I could pass out and can sleep up to 5 hours at a time. I got out on iron tablets years ago and have done nothing. Changed my diet done nothing. Stopped smoking. Done nothing. My sleep is horrific. I have constant brain fog, can’t concentrate, terrible memory. Headaches etc the list goes on and I don’t know what’s wrong with me? I will go out for a couple of hours and have to come back and sleep for hours.
wait oh my gosh?? i had an allergic reaction to amoxicillin years ago, and after that i had years of awful mental and physical health. i eventually got diagnosed with lyme disease, but even after i received treatment for it and mostly recovered, i have often still felt constantly fatigued and brain fogged. lyme disease often causes fatigue and brain fog, so i thought it might have turned into chronic lyme, but hearing about your experience makes me wonder if somehow the combination of my allergic reaction and lyme disease is something to look at. thank you for sharing your experience, emma!!
I dont have this condition but i do have a condition where there is absolutely no research or help. Having an invisible illness where even DOCTORS dont understand the struggle you go through is the worst thing possible. Ive been almost blind and turned away. Told im lazy and a lier (even by my family) but KEEP talking about it emma! Never stop the more awareness, the more dianosis and the quicker there is cures/meds that can help and heal :) much love
I am so happy for you that your symptoms are improving over time, it's honestly great to hear someone with some influence talk about this illness. I got diagnosed after the same problem as yourself, had glandular fever and then a reaction to penicillin. Would be great to hear about how you handle your symptoms etc, I know it's different for everyone else but I know others with this condition also like hearing about how others handle it. The area I am from has a chronic fatigue support group which is so helpful but we cannot meet right now due to the pandemic.
Like yourself, I am glad more research is being done finally. I was diagnosed in 2015 after having symptoms since 2013, it all started just before my GCSE's, passed luckily, but then got asked to leave the A-level course I was on due to my health. Having a partner who understands is a blessing too! I was unlucky to have my CFS creep up on me on our wedding day, so I had to leave our own reception early which sucked but most people understood.
Haven't watched your videos for absolutely years but for whatever reason I stayed subbed. Always supported your career Emma, just fell out of watching youtube.
I was diagnosed with fibromyalgia at the start of this month - June 2020. This has been a long waited diagnosis but having something that can't be fixed or cured is heartbreaking. I'm trying to remain positive but it's so difficult having an invisible illness. It's exhausting just dealing with the fact you can't do everything you wanted to do that day or you have to cancel plans and let everyone down again - I try not to make plans in the first place unless I know I can rest afterwards so even if I push myself to go, I can come home and not need to do anything else for the day
I have had cfs since they think I was 10 yen from my heart condition I’ve lived with all me life, Utd so hard to explainenleik saying I’m tired and people saying your lazy and if you don’t rest you end up in so much pain and just can’t even shower without going on oxygen, having to stop Shen your walking up the street. Thanks you so much for marking a video and spreading the word so more people will understand x
we love you emma! you have come very far through the years and even if u think u have no one you have us. bad days are pretty shitty but you have got to have the bad days to have good days. thank you for being an inspiration to me and i love you and i will always love u and i will always watch you and support u as best i can. x
Thanks for still talking about this. I have CFS and fibromyalgia. I was diagnosed 6 years ago. Been suffering with cfs symptoms for as long as I can remember but from getting glandular fever aged 19 plus strep throat, I also got given amoxicillin in a BIG dose and I had a reaction to it, it makes me very poorly. From this my fatigue got HORRIFIC and I kept thinking it was other things.
I then got a severe kidney infection 6 years ago and was very ill. Amoxicillin given and got really sick from it, again.
It was actually your initial video which helped me get diagnosed!
I could honestly cry seeing how many other people have CFS, I always feel so alone, so thanks 😅
I hope you'll be okay 💗 take good care and sleep a lot 💕 you're amazing, sending loads of energy from France ❤️❤️❤️
I have multiple medical conditions that cause fatigue, so I'm exhausted almost all the time and, like you, can fall asleep at a moment's notice no problem, but doctors here in the US refuse to label it any kind of disability, so companies won't make accommodations for me, and I'm too tired to fight it. I just end up quitting jobs a lot because I'm too exhausted to keep going. I'm actually behind on my CZcams viewing because I've been sleeping so much lately. :P
Thanks for the update! I don't have CFS, but I have a lot of other crap (including a penicillin allergy, oddly enough), so I understand in my own way how you feel, Emma. I'm glad you're feeling better right now, and I hope that continues for you.
Omg mine started after an allergic reaction to penicillin! I never knew this was a thing. Wow. I've had it 3 years now. I also moved onto eating meat as well because my body demanded it. Wow, I'm so glad I've found your channel. x
Holy shit. I got diagnosed with this 2 years ago now after searching for what the hell was wrong with me for 3,5 years at different doctors while ending at private clinic. Basically the same age as you. I'm personally doing too much so my symptoms increased a lot the last year. It's comforting to see someone that I'm not the only one, both by this video and in the comments. A lot of people still dont understand the illness and its quite hard to deal with it personally as well. It sucks to be young and not be able to do simple tasks. But brain fog and the headaches are for sure the most irritating, considering even reading a book is hard to do then. Def as it happens daily for me. Really happy to see its going better to you and it gives me more hope and also helps me accept it.
I totally agree about the huge lack of knowledge of the effects of medication. Antidepressants have ruined mine and a lot of others lives and almost every doctor out there will tell you that it's just all in your head and they don't believe meds can do such a thing. Not to mention they can give you such a rare misunderstood condition called PGAD which is hard enough to get recognition for, let alone for the fact that medication can actually cause it.
Thanks for making this video and letting us know how you’re continuing to deal with this! I also wanna say that I’m so glad you have such an understanding and caring partner. I’m sure that makes the hard days actually manageable.