Living With Chronic Fatigue Syndrome (CFS/ME) - 11 Years Since First Symptoms
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- Опубликовано: 28 июн 2020
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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 RUclips.
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.
TIP: Say "developed it" instead of "contracted it. :)
(That's what I say about my Type 1 Diabetes).
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
me: ooo a *new* video
patreon: lol u thought-
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
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?
Tell your partner that we think he's amazing, God bless him, sending you tons of good vibes Emma ❤️
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
Thank you for talking about this! As someone else with CFS I really appreciate you spreading the word about it.
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.
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
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☺
This is very interesting! Thank you for opening up and telling us about it. I hope it gets better for you!
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'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.
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!
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 :)
you’re genuinely one of the most honest genuine people on the internet and you deserve so much more appreciation 🥺
thank you!
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.
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 😂
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 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.
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.
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'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.
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.
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
Honestly, I had never heard of this condition at all! Thank you so much for taking the time to educate us about it.
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! 💗
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).
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!
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.
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 💖
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
its crazy you still seem so happy and energetic in your videos. i would've never noticed.
My mum has chronic fatigue syndrome and it’s definitely real and exhausting. You’re doing great!
This is so, so helpful and informative. So appreciate this Emma!
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!!!
Thanks for existing emma. I love your music.
I hope you'll be okay 💗 take good care and sleep a lot 💕 you're amazing, sending loads of energy from France ❤️❤️❤️
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 💙
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
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 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.
thank you for talking about this emma
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
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
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
That abrupt ending triggered my OCD 🤣 Love the video though, great message and looking forward to seeing more.
Thank you so much for sharing! I have been having daily health issues for now almost a year, and it's so difficult to deal with something everyday, that is out of your control. And it can feel so alone to deal with something like this. Wishing you a full recovery!
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.
Thank you for speaking for me!!! Your video is so helpful to send to my family
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.
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 have suffered myself for 2 and half years, I feel you! ❤️
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.
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.
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 RUclips 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 😊
Thank you for this, honestly the way you described the symptoms has got me thinking maybe its something I need to look into, I relate to all of these. CHeers for sharing Emma!
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, ruclips.net/video/ovOnZ6dkL7k/видео.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 ?
It's so good that your partner is able to tell when things are going to get bad for you! I'm glad you have him to help 💜
Oh my gosh! I was diagnosed when I was 9 and it wasnt well known at all. Now 5 years later, with mainly POTS symtoms, it's so nice to see more information (for lack of a better word) out there. Espessially by someone well known. Thank you 💕
havent watched the entire video yet, but i hope you go on to be more healthy and happy. haven’t watching much of your content nowadays but i really do wish you all love, bless you :))
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
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!
Youre a fighter! ❤️
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.
This is so good to know I just want to thank you for talking about this. My mom is also allergic to penicillin and I had no idea this could potentially happen to her too
Thank you, this has given me some hope. I was also lucky enough to have the process of elimination diagnosis too about 4 years ago. Though I still struggle with the idea that I have it and it's not something else. Like you said, just being lazy ect. And hearing some of your experiences is comforting in a weird way. Thank you again and I'm soo glad your feeling better!
Being diagnosed with Fibromyalgia 4 years ago, I can totally relate to this. Sending you love 💕
good to know things are getting better lets hope more things will gradually continue
Hi Emma! I'm in the process of trying to get a diagnosis. Researching and clicked on this video thinking you looked really familiar. Then, I remembered the video you did with Barry & Ashens, the odd food combos. I think there were others, too just don't remember for sure. These videos are really helpful to those of us still struggling with this, but trying to get someone to officially recognize and name it! Thank you
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
i haven't watched you in years and i have only know found out you have cfs and it makes me kinda proud as someone who has it.
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 :)
Thank you for this , its so hard explaining what is wrong with me to others.
no one belives im exhusted they think im lazy, grumpy, rude , ignoring them or depressed, slacking off.
Im physically strong and have a big personality but CF steals my freetime and my happiness.
I feel weak i cant work certain jobs i cant live how i want.
Im glad it was me instead of someone else though as i know i can handle this and will work hard every day to reclaim myself.
So glad to hear you are doing better and have a supportive partner. Thank you for sharing :)
Love your content Emma
Love you Emma stay strong ! ❤️❤️
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 :)
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 💕
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
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
Just wanted to say what a kind, lovely voice you have. Great video that made me feel less alone
glad you're feeling better!
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 RUclips 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.
Stay strong!!
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
Man you’ve really grown up and aged really really well it’s been a very long ride and I’ve been watching your videos for a seriously long time I hope all is good and your doing good I wish you all the best
Thank you for this video.
i feel your pain emma i have CFS too mine wasnt caused by an allergy but by a neurological condition called Devic's disease im glad you have coping methods though stay strong
Much love 💖💖 doesn't sound fun! Stay safe and keep composing :)
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 CFS/ME, have had it since I was 18 (I’m 21 now) and it seems to have been set off by a mold problem that messed up my lungs, I almost had to drop out of uni because of it but luckily I was able to change to a more accommodating course. Glad to hear that you’re getting better, I remember watching your first video about it when you released it and thinking at the time ‘Wow I hope that doesn’t happen to me’ 😅