I Have Chronic Fatigue Syndrome
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- เผยแพร่เมื่อ 4 ต.ค. 2024
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I am so fucking done with everyone blaming things on 'laziness'
I hear all the time that people with depression are being called lazy
Or people who have sleeping problems.
I have dyslexia but that was only discovered when I was 12. In primary school I used to get straight A's, expect for spelling. That was the only subject were I got bad marks. My teachers and even my parents would call me lazy and say I should study more. It never occurred to them that I might have not been my fault. Because I was the good student, how could it be possible that I might have trouble with a subject.
And the worst thing is that I actually started believing them.
Nowadays it's like a trend to 'be lazy'. It annoys me so much because they literally start blaming everything on laziness, especially when it come to teenagers. But that's fucking unreasonable because a lot of teenagers tend to develop some kind of mental illness and adults just try to deny the existents of them.
So please if people are calling you lazy don't just swallow their bullshit, try looking into it a bit further because there might be a valid reason from what's going on.
This happened with me too. I didn't get straight As but I got close to it.dyslexia sucks. Luckily my school noticed how bad it was and I get 25% but all my older cousins and siblings did it with no help and got As.all my family say I should put effort into work and that I should actually try but that's the thing I do try
Kayleigh McDonnell people don't understand how much dyslexia actually sucks
+Banana Party my dyslexia occurs with maths and numbers and one of the symptoms that are very prominent with me are that my mind goes off and I can't control it. I will be looking at a board and trying to understand the numbers but my mind just wonders and I have trouble with concentrating on something and it makes me so tired trying to get my brain to actually remotely focus on a question and try to do it. Most days I walk out of maths with headaches and migraines. But still teachers say Lucy your not listening or Lucy you are so lazy when in actual fact I am trying so hard. I was diagnosed
Dyslexia at age 9 but people still don't recognise all the symptoms
Lucy Tilley That sucks. People usually say that it's 'not that bad' but they have no idea.
My dylexia isn't even that severe but if I have to study vocabulary from a foreign language for to long I get really bad headaches. I can't imagine how bad it must be for you
Sitting here in tears right now watching this! I've had ME/CFS since I was 14 (now 21!) but it wasn't diagnosed until I was 18 after it became severe following a virus in my first year of university. I had to leave my degree and quit my job, I lost the use of my legs and became bedbound/wheelchair-dependent. I decided to start blogging/making TH-cam videos during my medical leave and it was the best decision - I now know that I'm not alone and get emails every day from fellow sufferers, being a vlogger with M.E is *so* incredibly difficult and I feel so overwhelmed to know that I'm not the only one who does it! Getting diagnosed was the biggest relief to me also - bittersweet that it's an incurable and pretty untreatable illness to have, but glad to know that I actually *did* have something wrong with me. Again, huge respect for doing this and I'm so proud - always here if you need anyone who 'gets it' x
P.S. Thank you on behalf of every fellow sufferer - ME/CFS deserves and needs so much more recognition and awareness, and it's incredible that you're using your voice to do that. It's hard enough to live with a chronic illness let alone when it's quite a misunderstood condition, but the more we get people talking about it the better! It scares me to talk about it on TH-cam as every minute of my life is controlled by this illness and it's hard when people judge because they don't understand - but you've really encouraged me to keep helping others and raising awareness. I hope everyone treats you with the respect you deserve
OOH and okay I'm really sorry to keep commenting on this but I just thought of an important point that people might not realise! Chronic fatigue and chronic fatigue syndrome are two very different things - chronic fatigue is a symptom and chronic fatigue syndrome is a neurological illness, so if a person's only symptom is debilitating fatigue then it's likely to be the symptom 'chronic fatigue'. Then there's CFS which has *so* many symptoms (I could name fifty symptoms that I experienced today for example!) and the diagnostic criteria is pretty strict. I'll stop now haha :) thanks again, Emma x
I was actually going to tweet you this video if you hadn't already seen it! I was so overwhelmed by this video also. I'm glad you've watched. All your comments are so true and I have also commented but if you read this instead Emma I just want to back up Meg's BIG THANK YOU xxxxxxxx
Meg Says Hi Meg :) We know how you feel and I'm sorry you suffer from the terrible neuroimmune disease ME/CFS!
We want to invite you to take the #chilliMEchallenge - organized only by patients to spread awareness about ME/CFS and the donations raised go directly to the best researchers.
Of course check out our channel here but also FAQ &info at chillimechallenge.wordpress.com and FB is what we update most facebook.com/chilliMEchallenge.
Lainey Harrison aww, thanks for thinking of me Lainey! :) Really appreciate it x
Sookie... go to the well...
OfficialNerdCubed Congratulations you reach the next internet level
Dan, you're obviously referencing something that I have no idea about. Im just glad to see Emma's fellow TH-camr friends comforting her as well as her subs.
Joel Törnlund I heard someone mention that. Dan has dealt with it fine and so has Emma. So they'll be fine.
OfficialNerdCubed Now she has an excuse for losing on Demma Plays.
Wait, Dan has this?
I have Severe ME/CFS. I'm bedbound, tube fed, light and noise sensitive, in constant agony, have severe muscle weakness to the point that I cannot move my legs at all and have limited movement in my arms and hands and spend a lot of time in hospital. I'm 16.You are a real inspiration to me and I binge watch your videos when I'm in hospital or just having a crap day. Thank you for continuing to make videos, I appreciate how difficult it is 💞
I have recovered using herbs .
Am sorry 💔💔 I hope you get better one day ! Am going through the samething not as bad as you but Ik how it feels
Have you been doing any better? I saw this comment was from 5 years ago. I hope you’re doing okay ❤️
Sorry that you have to go through this! Isn't there another TH-camr who has this? Seems really familiar.
MattShea my friend NerdCubed also has it!
MattShea I did not expect for you to be on this video. Love your videos Matt!
Just watched it video
Becca Rose also has ME. :/
ManlyStuff Forever *ur*
As a part of the fandom, I'm sure that everybody will repeat this: despite your diagnosis, we will keep on your side, mainly because we know that illnesses are a long struggle. It must be relieving to know that it has finally been confirmed, and please do not cry. We will stick by your side, Emma, even if you're feeling down. You are a beautiful woman and you are one of the most inspirational people of this whole TH-cam society. You have not changed because of what's happened: please, just know that you have not changed at all.
y e s
A truly beautiful comment, thank you
Huge hugs from me to you right now, Emma. I've had CFS for 10 years now. Please be braced for all of the ''Lol you have CFS? I must have CFS too because I get tired too!'' remarks.
But I am so glad you finally got diagnosed. I hope you're under a good doctor! I'm under The Royal Free personally. Chin up, and thank you so so much for sharing all of this and bringing light to CFS on a larger scale with your audience.
Xxxx
+JinxieMinx Hiya, i'm not sure you'll see this but I wanted to ask something. I am in a situation where I am very likely to be diagnosed with CFS, if my blood test results don't reveal any deficiencies or glandular fever. Are there any ways I can prepare for being diagnosed (the idea terrifies me)? Like, after diagnosis did things start to get better or is it just as bad? I'm genuinely freaked because it's a life long thing and it sounds as though it can impact peoples lives in horrible ways, and I'm scared of losing my dreams because of it.
+BlessedWith AFangirl if u got diagnosed with CFS feel free to email me. Don't worry it can be reversed but you need some patience ;)
I can't believe I managed to miss this video until now. I'm sorry to hear about this, seriously. The thing you said about everything making sense now actually really resonated with me, I think it's time to go get checked out and see what's really going on with myself. Thank you for this, I don't know if I'd ever figure out what it was, I'll update you later on.
@Jesse Liam Yea, I have been watching on kaldroStream for since december myself :D
@Jesse Liam yup, been watching on kaldroStream for months myself :D
Hey Emma, I know exactly how you're feeling and I'm sorry to see another TH-camr going through this. I was diagnosed with ME & Fibromyalgia in June 2014, I did all the treatments and tried all the medication but eventually figured out what worked best for me and how to handle it. If you ever need any advice or just someone to talk to who understands what this horrible illness is then don't hesitate to contact me. I know emotionally chronic illnesses can be bitches and really take a toll on self esteem and mental health so if you ever need anything just let me know. You're strong you can get through this.. hell you've come so far and achieved so much despite having this disease for 6 years. You're awesome keep fighting x
I knew I would see you here :3 Ly Kaeyi ♥
I knew you would offer advice
It's horrid I suffer from it as well
***** Could I get some of that advice as well? :3
***** thank you beautiful
I know this quite well. Sending hugs
Didn't know you'd had cf Beckie. Or was it a relative?
Don't wish to say I'm afraid. xx
+Graeme Evans i think its a relative of hers
I'm so proud of you, remember we all love and support you. You are so brave for sharing this
I agree :)
Also your profile pic is amazing
Irrelevant sorry k bai XD
I also love your profile picture and agree with your statement
I totally agree!
What i hate
Us teenagers get ingnored and dismissed when we raise a concern
concern: Im being bullied
responce: Just ingnore them, they will go away
concern: i feel depressed
response: stop attention seeking, what have you got to be depressed about, you are a teenager, you have it so easy
concern: I believe i have CFS
responce : No you dont, just have an extra hour of sleep
Patience
***** It's true though.
Only becuase adults are so used to their issues, they think their problems are way bigger than ours.
I understand there are people out there who have it much worse, but that doesn't make me feel any better becuase I have my problems and I want it solved as does everybody else.
+Daniel Hill ugh i agree so much
teacher: why are you late
me: sorry, im currently being tested for cfs/me i cant really help it
teacher: stop making excuses, you're just a lazy teenager
+Rhianna Jay Teachers! Just ingore them, they're so hippocritical.
For Example...
... In class
Teacher: We are going to do uniform check. Remember, you need to have suitable Footwear.
*While they are wearing a pair of high heels so high, their heads are in the clouds *
Another Example ...
In science class
Teacher: Long hair must be tied back!
*While their hair is flowing back like fucking Repunzel*
One more Example
Teacher: You're only allowed to drink water in school!
*While having a Pepsi FUCKING Max on their desk*
There are so many examples, do you want me to continue?
Daniel Hill teachers: you musnt ude phones in class *"hold on a sec let me take this call"*
teacher : you kids need to get out more and stop being inside all the time *sets loads of homework*
Hey Emma, I'm 15 years old and I've had CFS for almost 4 years now started when I was 11 diagnosed at 13. it's the biggest struggle I've ever had to deal with. I couldn't walk for about a year and a half, but I can now :) everything you said in this video I can relate to! It's so good to know that someone else understands the way I feel, thanks so much for making this video. You are awesome! Xx
Oh my goodness I'm exactly the same! I was kind of bedridden for about a year and it took ages to get a diagnosis. Now I've missed about 2 years of highschool and its all really difficult still but I'm so happy Emma made this video and was diagnosed! The day I
finally got a diagnosis was pretty damn great too :) best of luck to you
had it for 9 years, been bed ridden for 3 years. Just starting to get back into the mode of full body spasms, I have had one migrane that was so bad, it niggled away for a fortnight, doc said it was almost defiantly due to cfs. I seriously considered suicide, as it seemed to be never ending, im so tired but cant sleep, I've been awake for 72 hours, its a bitch, no matter how mild or bad it is, it's serious...
Im 15 and ive had it for 2 years now.I was bedridden for about 6/7 months and it was awful.Ive been home schooled for about a year and a half now and i dont think im going back to school anytime soon.It feels so nice to know other people deal and understand the way i feel on a daily basis.Its so hard to deal with when people think its made up and all in your head.Its so hard.Defiantly the biggest struggle ive ever dealt with.
Wow. I honestly can't relate to this, but you guys need to remember to stay strong and I'm behind you all the way x
You are so brave oh my god! (Cyber hugs) We all love you and are here for you. I know I'll never truly understand of cores but I know we'll try.
Y
Watch inthelittledream day 13 if you want another prospective
helen rydero'neill Thanks, I like understand the idea but I'm saying I'll never truly understand because I haven't gone through it, thank you though :)
The Spoon theory is a good thing to look at if you haven't already. My friends has severe M.E. It's linked to the nervous system being messed up. Doctors just fob people off, my friend has been called a liar too many times, when you find a good doctor then it's half a battle.
Bethan Hughes the spoon theory is fantastic
Bethan Hughes Yes, this is what I came here to suggest. It's a really awesome way to explain to those who don't understand the "invisible" syndromes with something somewhat tangible that makes it easier to relate to.
bellapalmera the spoon theory, people explain it as 10 spoons and doing things take so many of those spoons aways and the spoons represent enetgu
I remember watching this video when it came out and just feeling a lot of feelings towards this video.
2022 and I'm back rewatching while waiting for a diagnosis. You have NO IDEA how amazing this video has been for me. I will keep pushing until I get my answer ♡
Thank you SO much for making this, Emma. Literally just came back from a long and hugely frustrating day in the hospital, having tests and more tests to get to the bottom of my illness (which is extremely similar to CFS - and may still even be CFS?). Fortunately, we're getting to a point where we can talk (more) openly about mental illness, but physical illnesses are still so taboo. I don't know if it's that we're so ashamed of our bodies, or that we feel such pressure to be living full and productive lives. I wish I could say 'it gets better', or 'it'll get easier with time' but it's a bloody PHYSICAL illness and there's little you can do about it. It's cruel and unpredictable and horrible and honestly, I don't know what the hell we can do but talk about chronic illness to break the taboo and let our voices be heard. Just don't let it own you
celobean And don't let doctors bully you into silence. Young women in particular are rarely taken seriously by the medical profession, which is partly why it takes us so long to get diagnosed. I was prescribed anti-depressants when I was so ill I couldn't walk 20 metres down my street!!
I've also been at the hospital all day I had eds CFS and pots. Doctors are idiots most the time the leading doctor for my condition called me lazy at the leading children's hospital in England. But then you get some doctors who are amaing but sadly there's not many :( I wish you luck in getting help with your consition/s Ezme :)
SparkleOfRainbows I have EDS and Im being tested for PoTS at the moment, i wish more people knew about it! Ive never been so happy that I've been diagnosed!
I know it was such a relief knowing that it wasn't all in my head and there was others out there. My PoTs is being managed pretty well by medication and steroids and there's loads of different medicines you can try :D
I really hope I am diagnosed with it, then I can be happier knowing what it is! :)
Oh, wow.
I clicked on this the second I got a notification.
Lmao Emma is love, Emma is life.
AW NO EMMA DON'T CRY NO
I honestly started crying a little bit, when you said that you cried because your doctor believed you. I know what it feels like when no one knows what's wrong, or when people think you're faking. I just want to say that I still love you so much, and I could never blame you for your uploading schedule. And thank you for telling us, when it's not really any of our business. Because we're here for you, and even though I don't understand completely, I'm gonna do my best to understand what you're going through. Lots of love Emma.
I'm crying right now because there's a problem I'm so certain I have and have had for so many years but like you my parents didn't believe me so I though I was just stupid. I finally got the courage to go to a doctor myself and they gave me a prescription for drugs straight away but they turned out to be a 'pill pusher' so I was back at square one. Now I'm finally booked in for actual tests, and although being diagnosed with anything is shit, I'll be so happy just to find out for sure.
Poppy Hunter Also I have a friend with Chronic Fatigue, hers actually disappeared completely for a few months than came back lightly again. So you may not always have it really bad :)
Hey, I'm glad you've finally been diagnosed! I've had CFS/M.E for almost ten years now... I was born with rare disabilities that affect my muscles, nerves etc, and I've had M.E since I was roughly 13 and diagnosed at 14. I'm amazed that you have CFS because you seem to be so energetic and always have videos out. I've been pretty severe for some years now and I 'crash' often. I spend a lot of my days inside and in bed. I tried to be a youtuber but it doesn't exactly work out when I go for months without posting... It's something I wish I could do. I also love to sing and perform and would love to finish college and go to uni... But I had to give it all up. It's nice to see someone kick CFS's ass! I know you have your bad days, but it's awesome that you still put videos out! If you have any tips on how to film and edit with CFS/M.E and how you manage it I'd love for you to do a video on it, it would be really helpful. :)
emmablackery
Henley Phoenix Not Emma, but just spitballing here. Where and what are the bottlenecks for you in editing? Final Cut for instance allows for user-made add-ons, and I'm wondering if something like a speech control could help there? Something like "forward ten seconds, back eight frames, cut, delete strip two".
I don't know if something like this exists or how hard it would be to create (as a programmer I'd *think* it should be fairly do-able), but perhaps that could be something to look into?
Best of luck with your situation!
*sends you lots of spoons and lots of hugs*
When Emma started crying I was on the verge of tears I hate to see anyone cry
Same here :( hope she's okay!
I get that too
I speak collectively when I say you have OUR FULL SUPPORT!
We understand if you are too tired to film sometimes, please don't find it imperative to upload if you are physically unable to!
I am so so so happy for you
Hii I just saw u on phils video (mousy ☺️)
Heyy :) haha yup, that would be me!
Wait phil being AmazingPhil? Cuz if so yay Phandom members, if not ignore me and my weirdness :3
Kira Kruegler yup amazingphil
Eliza Fiver Phil's video? I don't recall seeing anyone in his latest video. Am I missing something?
I hope you know just how many people you've helped by coming out about this. I, too, deal with chronic conditions that affect every part of my life and threw it into directions I never thought I'd have to head in. It looks like you have a lot of viewers in that situation. You hit on so many themes in the chronic illness lifestyle; it's damn near a perfect introduction to being chronically ill. That feeling of relief is so sweet and, honestly, I almost pity healthy people for never having the opportunity to feel it. Pardon my response for being a bit scattered - that brain fog is the worst. I'm sharing your video with my fellow chronically ill friends. Someone mentioned the Spoon Theory below and I highly recommend that you look it up. I wish many spoons for you.
Emma
I understand completely
Nobody understood me for so many years, the same thing was everyone thought I was lazy and I didn't apply myself in school
On March 10th 2013 I was diagnosed (rather late if I'm honest) with ASD (autistic spectrum disorder) and dispraxia
Like you I cried with relief
Since then I haven't been called lazy or useless since and bullying for me sadly got worse but now being year 11 and left school for now waiting for my GCSE results
I understand and don't let anything get you down
Love your videos and congrats on nearly hitting 1 million Subs :)
I have CFS too, as well as Fibromyalgia. I was diagnosed when I was 11 (now 15) but I have had the symptoms since I was 8 but doctors didn't believe I was ill. The daily pain is unbelievable and the 'brain fog' confusion is horrible. I can't regulate my body temperature so frequently get heat exhaustion, I have major trouble balancing and fall a lot (permanently damaged my wrist because of this.) There are days when I just want to give in and stop struggling to be 'normal'. I have had to leave school, I can't go out with my friends, I used to be able to do anything I wanted but now I struggle to stand. Because people can't see anything wrong you get labeled a liar and get told you're just lazy. You are told that you're not ill, you will be fine if you just get up and do something, that if you tried more you will be fine. No one truly understands what you're going through on a daily basis. Now I'm crying....On top of the pain, exhaustion and confusion, I have depression and sever social anxiety. I have panic attacks in half-crowded places and avoid many types of situations. When I feel ok, I do what I can, the next week, I can barely do anything. This illness is a horrible roller-coaster and when it crashes, so do you. My school threatened my mum with legal ramifications because I was unable to attend school, they called social services and I was removed from my house for a week because they thought my mum was causing this, that nearly killed me. Literally.
Please ignore all the hate you may get for having this illness and keep strong! Lots of love and gentle hugs x
I went through something similar to this and I was misdiagnosed 6 times and was told I was attention seeking. I then collapsed twice at school and was rushed to hospital to find out I had myasthenia gravis. A serious muscle disorder x I hope your life gets better xx
Your not alone in your fight I promise. I'm 14 and have CFS eds and pots. Your so brave and never give up beautiful xxxxx
***** I have fibro and "probably" CFS too! You might want to look into Ehlers-Danlos syndrome if you are falling a lot and have trouble regulating your temperature. Are you hypermobile or "double-jointed"?
Alex Springett Thank you so much :') x
TheBrookGuitar We are looking into EDS and HMS with my doctor, I have hyper-extended my knees multiple times as well so it is a possibility at the moment x
You are so pretty in this video!
this is about her condition not how she looks
ahmad ahmad is she not aloud to compliment her?
Caitlin H so much correction on this comment lol XD
ahmad ahmad Um rude ... the girl was just making her a bit happier jesus I'd hate to see you hating on the haters
Thank you ^ 💕
I am a sufferer of CFS and fibromyalgia, thank you so much for doing this video! I'll share it on my fb as it explains it all better, more eloquently, than I ever could. Thank you. Take care, you're not alone. Xxx
im quite young so everyone thinks it's so insane im tired a lot, but i think it might be CFS. i just wake up tired ALL THE TIME, like no matter what i do. i get horrible headaches loads and i can barely stay awake sometimes. my mind wanders so much, and i can find odd pains in places and im not sure where they are from. thank you for posting this.
Same, I hope you stay well x
How long have you felt like this?
Go get diagnoses from several doctors, especially ones that accept that CFS is real, but also be ready for the possibility that you're a teenager & your body is going through enormous physical & emotional changes. Either way, eat healthily, sleep lots & get lots of outdoor exercise (particularly in green places) and look for fun. I hope for your sake it is simply puberty because CFS is really crap.
I've had this 21 years this year since I was 11 and I'm now 31 and now my daughter who's 12 has just been diagnosed it's absolutely heart breaking I feel awful I never thought my children would get this or that it was hereditary 😢 thank you for this video you will help a lot of other suffers or people that think they may also have this. You've achieved so much and still continue to do so that's fantastic :) your never ever alone it's great that it's a lot well known now sending you love 😘 xxxx
hi I saw this comment and just had to reply... I'm thirteen and have had c.f.s since I was three... I just want to to know don't worry about your daughter I mean of course you will your her mother but try to remember she can do anything any other kid her age can do it will just take a lot more time and effort ... next year I start gcses... and tomorrow I have a meeting about starting school work from home ... of course this is upsetting because I just want to be with my friends and be normal
... Make sur she knows theirs no such thing as normal she can be whatever she wants to be her condition dose not define her ... There's always gonna be hard days but the good days make up for them xx I just wanted you to know that her condition won't change her life if she doesn't let it xxxxx
+Zoe Berger cleanse the lymphatic system of toxins and infections could be fungal infections, viral infections, or both cleanse the lymphatic system and also the main cause is adrenal glands overwhelmed and not functioning properly, so improve adrenal and cleanse the lymphatic system which is your immune system with a vegan diet and taking Parasite M, Lymphatic system tonic cleanse and Kidney and bladder cleanse to get all the toxins that are released in the die off part when the candida dies also take Adrenal gland tonic to improve adrenal function all these four medicines found herewww.drmorsesherbalhealthclub.com/products/parasite-m?variant=1128967768 hope this helps do look into it and Dr. Morse on youtube, also to these medicines along with Parasite M can be added Propolis, Oregano oil capsules and garlic. Cleansing the lymphatic system off toxins from food and infections gets rid off the congestion and inflammation the pressure pain behind the head all over, exhaustion, brain fog, impaired cognitive and nerve function and nerve pain, glandular function all these connected to our lymphatic system
If it can be acquired during a lifetime, chances are it's inherited by epigenetics. Basically, chemical tags affected how the DNA is expressed and not necessarily the DNA itself. These tags tend to mostly go away with reproduction, so this might not be a problem for more than two generations.
We love and support you either way Emma. You're doing so well ♡
People who have called you lazy need a reality check and to see the facts. It is difficult to live with and more people need to understand that. I hope that you're okie emma and you're very Brave for actively talking about it :)
This really speaks to me as a long term CFS sufferer. Thank you, sometimes you feel no one else get's it, even the people closest to you
I'm not saying everyone in the comment section is lying about having this disease but it's TH-cam so I wouldn't be surprised
Yeah the amount of people claiming to have this seems really disproportionate to how common it is
Macasaurus You forget maybe some people dont know Emma, it may have just come up in there What to Watch or maybe the googled it You dont know.
i mean... it is a common thing, but like??? It's also basically the symptoms of being a teenager??
So many people have this illness since it runs in my family I am aware and a lot of people who have it show up to videos like this to support others and it would be a vile thing to fake having this horrible illness I do suffer from and it makes me feel sick that people would do such a thing for attention
***** It's much more than 250,000 now unfortunately, they desperately need to re-calculate the number of people with cfs but due to the scary amount of people that have this condition I believe they wont tell us the true numbers.
My friend Zoe has C.F.S moderate like emma and it really has effected her life. She only goes to school one day a month or sometimes less and I went to town with her and a couple other friends and she has this chart where she writes down how she's felt that day and I could tell how exhausted she was then. She wrote down mild and then she pretty much collapsed. It was quite a wake up call for all of us and I hope u carry on doing great emma Xx
Emma, you are most definitely not alone in suffering with this. My mum suffers from chronic fatigue syndrome, fibromyalgia and so many other things that I cannot actually list on my hands, and she has done since I was about 2. You are most definitely not lazy. Not in the slightest. You inspire people every day just by being you and doing what you do in day to day life. In fact, you actually making this video has probably shown many people out there that just because you have been diagnosed with an illness that will most probably change your life does not mean that you should just give up. It's shown everyone that you are a strong person.
Hey Emma.
When I first watched this video a few weeks ago I cried with you because I felt exactly the same, and have done for many years now. Recently I booked a double appointment at my Doctors and attended with evidence of all the tests that I'd had that came back normal and a long, detailed list of my symptoms. Finally after many months of going back and forth to her and having a million tests she FINALLY diagnosed with me with CFS.
If it wasn't for this video, I wouldn't have been able to do that. Since that appointment I was referred to a therapist, and I'm feeling really positive about my future and about getting better. It has given me a lot of hope and relief.
This video really means a lot to me because of that and I just wanted you to know what a big help you have been. THANK-YOU from the bottom of my heart! :-)
I didn't know this was a thing. I'm going to get checked for this and see if it's triggered by my depression.
TheEncyclopediaofCrazy I have been called lazy so fucking much, and because I'm only 14 people discount my muscle pain as complaining (I've had symptoms for years though)
I get called lazy, and I get sore and headachy, all the time. Exercise I like helps a bit (skateboarding, swimming) but I honestly can't control it.
I've had depression for about three years. Its been cause by me struggling with my sexuality and gender identity and body dysphoria because I'm transgender. And I really think it's caused this. (not diagnosed by a doctor but I know)
I'm going to a therapist soon and hopefully I will be diagnosed officially. I don't want any pills or any medication to fix my depression or chronic fatigue syndrome if i actually have CFS I just want to be able to not be judged for something I can't control.
Thank you for posting this, so much. You've always been and amazing person who's affected my life in a very positive way. In times where I couldn't trust my mom you've felt like a mother figure to me and I want to say thank you. Thank you so fucking much. I love you so much.
***** thank you
TheEncyclopediaofCrazy This is exactly the same situation for me I think. I've been to the drs before about it and theyve done tests but tests have brought nothing back for them to diagnose me with. I feel so bad all the time and I hate it, it affects so many different aspects but that combined with depression is a whole lot worse for me
TheEncyclopediaofCrazy how are you a transgender at 14, or do you mean psychologically?
***** I know that some children have gotten sex changes, of course with parent permission, but I'm sure how that works, it might depend on where you are?
The hardest part is the isolation imho. Trying to connect with people you care about but can't carry a conversation with them, remember what they say and stick to plans or social engagements. People assume "tired" is an excuse no matter how hard you try to explain it
I was diagnosed with this 3 years ago, also mild/moderate. And they say you never recover from it, but honestly I feel like I have recovered for no known reason!
Now I'm at the point where I am trying giving up sugar and usually that would have been something that made it worse, a trigger, but I'm 2 weeks in and feel fine... Energetic even (which is a weird new feeling honestly). I talk about it on my channel if anyone is interested
I've tried cutting out sugar, managed it for a month, but during that time I was just SO bad, so grouchy and so hazy!
Yeah I understand! I did that when I was first diagnosed. Only now when I am already feeling better does it sort of help. Still there is hope for recovery :) Even if we have no idea how
Carla D'Alessandro I don't believe it completely goes away but I have gone from bed bound to be able to compete in little triathlons. I still have a shocking immune system and many food allergies and I know my body isn't functioning completely normally but after 10+ years of working hard to improve my health I believe that I am getting there.
Carla D'Alessandro "And they say you never recover from it" - that was punch in the gut. I hope that ain't true.
That last sentence made me lose all sadness i has for you "I talk about it on my channel if anyone is interested" stop trying to use your disabilitys to get subs, likes and views by advertising on a decent persons channel.
It's so strange to know that no one has seen the entire video yet bc it's only been up for 6 mins...
I literally have all of these symptoms and have known about M.E for a long time, but when I went to the doctor about it they shut the idea of me having that the moment I brought it up.
Instead they brought forth the idea that I had anxiety and was depressed, something I don't think I was. After hearing it over and over "Oh, you just have anxiety. We'll give you someone to talk to," I started /believing/ that I had anxiety and depression, and thus that was what I got.
I am pretty sure I wasn't depressed when I went to the doctor the first time.
Much like in your case, I've felt like it's my fault for being lazy and out of shape, and have heard from literally everyone around me that it's just pretend. It's so destroying, especially when you have a feeling something is wrong. It's shit. I want to talk to the doctor again, but I've lost all hope in being diagnosed with something other than what I got through the placebo effect.
Acezu Chan I'm so sorry to hear this, unfortunally a lot of doctor in lack of better word "are dicks". You should keep on figthing (even though it's a pain in the a**). And go to a new doctor. Maybe serch online for doctors near you that know about ME/CFS and treat you with respect. There are a lot of support groups on facebook where you can ask for help or talk to people in the same situation. Hope you get the help you deserve! Keep on figthing!
I'm pretty sure the same thing happened to me "oh it's just anxiety and depression" Yeah thanks for that I have it now after believing you
Acezu Chan See a different doctor, honestly. I've been diagnosed with ME and fibromyalgia by doctors and specialists back home, but when I went to university and went to my campus doctor about getting a notice of exceptional circumstances for a potentially late essay due to a flare up, he told me I was 'just depressed' after having met me just 5 minutes before and not even looking at my medical history, even though I could literally see my diagnosis on the screen in front of him. The worst part is I DO have depression, but I also am chronically ill and will wake up in agony often, which has nothing to do with my depression. This doctor seemed to believe that you couldn't be mentally ill and chronically ill at the same time.
People often put the opinions of doctors on a pedestal, but many of them are absolutely awful, and if your doctor won't listen to you, then you need to find one that will. I'm sorry to hear about your situation and I hope it improves x
thank you for taking your time to share. anyone who deals with this deserves an award!
My mum has M/E and it's difficult to deal with. I use to have to look after her on days like you have. She can't walk far, she can't do much, she feels exactly like you feel or how you described, I don't know how you feel obviously.
I know you won't see this but I do understand. You're not lazy, it's not your fault. You're amazing and deal with it amazingly. If you need to talk, I'm here. I know you won't read this or anything, but feel free to message me if you need to. I looked after her since I was 10 (I'm 19 now) and though I don't talk to her anymore (she wasn't the nicest woman to me) I still worry about her everyday. She can't work either and it annoys her because she was always active before she got it.
You're amazing.
Always remember that.
- Harley.
I have ADHD and that is not the same as this, but one of the "symptoms"(seriously don't know what to call it) is that you lose energy from doing nothing. Like my brain can't stop concentrating on everything around me at the same time, I can't filter out sounds and things I see. Wich makes me exhausted. So before I was diagnosed I literally hate myself because I thought that I was just a lazy fatass who couldn't stop eating(the reason why I ate all the time was because I had no energy). When I haven't taken my medicin I can barrely go to the bathroom. Though being tired is not the main problem in my case, it's the fact that I can't concertrait and I don't notice when I lose myself in thoughts... So I don't have the same problem but I can relate to it so well.
p.s. ok for now, try to ignore that my name is "Grim repaer" here on youtube
I have adhd too, and i just wanted to say ur comment rocks 10000%
I have ADHD too
Grim Reaper Sounds like me, I have adhd and aspergers and some days just thinking makes me exhausted. Also when I have like an objective I'm supposed to do I start off doing it, 3 seconds later I forgot what I was doing and start doing other things.
Ahh i have the same but without the hyper 😐 so ADD
Grim Reaper there is two two types. hyper active ( you always have energy and you cant stop being annoying and you are very like no one likes you ish because your way too hyper) but the other one is where you just can concentrate. but when you have both this is basicly a formula that has the symtoms you have
Years ago, I got diagnosed with CFS and had the same symptoms you explained. It screwed up my teen years, and people just thought I was lazy too. My symptoms got worse over the years. I never recovered after a virus. One thing that helped with the fatigue, headaches, and muscle pain was going gluten free and eating more organically. Also, more people in America are finding out that there is sometimes an underlying bacterial infection that can trigger CFS, like Lyme Disease. I got diagnosed with Lyme last year and started doing treatment, which has been helping as well. I really hope the best for you!! Thank you for making this very informative video
you've pretty much just described everything i feel! it's almost like even the thought of getting out of bed or doing something as simple as leaving the house completely drains you & it's so easy for people to jump to the conclusion that you're just lazy or have no motivation. thank you for making this video, its genuinely helped me a lot and opened my mind to what could actually be an issue. i hope you're okay :)
If I saw you in real life I would give you a hug. You deserve some love and caring.
Hi Emma, I really love your videos and your channel. I am twelve years old and I have been diagnosed with anorexia, depression and general anxiety disorder for a year now. I have been admitted into hospital for self harm and AN, and I was given an NG tube (feeding tube) to keep me alive. That was 14 months ago now. I ate nothing for eight months, and then finally, slowly started eating again. Yesterday I got rid of my tube after all these months. It is hard but I can do it. I just wanted to tell you about all this stuff because I feel like I can really relate to a lot of stuff on your channel(s) and I wanted to give something back (if you are reading, you might not even be interested idk. Your videos help me to smile and laugh on bad days, and you are really funny and inspirational. I love you a lot
Olivia Boutell I also really identify with the symptoms of CFS, but that may be part of Aspergers (ASD) which I am trying to get a diagnosis for. We are all here for you btw!
Hey Emma, I feel as I may have Chronic Fatigue Syndrome, I can't tell my parents, as they won't believe me, they will dismiss it, last time i brought up a concern like this, they told me that it is nothing, that my anxiety is acting up, and then told my therapist, that agrees with them and pretty much dismisses my side. Thank you for taking the time to read through the end, I know not all will, but oh well, can't do anything about that, thank you for the videos and being amazing.
you should maybe sit your parents down and say "I have (x) symptoms and they are really bad and I would like to see a doctor about it as soon as I can" and then tell the doctor about the symptoms and only at the end should you maybe mention cfs
Emily Price Okay, that sounds like a good plan.
If you are able to try and see your doctor asap without telling your parents. If they dismiss it go back again and again. It took me a long time to get diagnosed and I am still fighting for treatment but it is all worth it.
+jeff coxies What happened? Did you talk with them and see a doctor?
Balomew I have talked with my parents, and they said that I should be fine and that i don't have it, but i have a doctors appointment for something else, and i will talk to him, and just not bring uit up again to my parents, unless if i do have it, then i may even then just keep it to myself, for my parents would just be annoyed, so yeah, we will know in about a week.
I can't believe I didn't see this earlier! Honestly your relief at a diagnosis is so so common and important, I was diagnosed with an autoimmune disease about 1.5 years ago and the only feeling I had was pure and utter relief at my diagnosis. That explanation for feeling so terrible and having a reason for not being able to do things, for getting ill for what looks like no reason, is so so important. At the time I had pushed to have tests done, and my doctor kept on saying 'nothing will come out of this I tell you'. Well I got to laugh in her face when my diagnosis came through, a simple blood test proved my immuno response levels were off the chart. Her first response to my diagnosis was 'it's not all in your head' My response was 'yes I know, I've been telling you that for 2 years'. That little dialogue I've found really characterises how a lot of doctors treat young women, and especially younger women with chronic illnesses. (needless to say, I changed doctors after diagnosis)
I HAVE CHRONIC FATIGUE TOO! It really sucks... I can't walk to school sometimes and my amitriptyline makes my mouth dry and I can't always wake up properly for school... I feel your pain
I have it too 😑😕😔
Fucking amitriptyline, I took symptoms over side effects - it's a horrible medication 😕
I don't have CFS but I have TMJ which is a joint disorder and I take amitriptyline too which sucks so much and it drains the life out of me, its so bad
spiftacular I have EDS/JHS which is a joint disorder, well no, it's a collagen disorder but it primarily causes problems in my joints, I'm sorry your meds are horrible :( I was on meds for anxiety and depression and had to stop because the side-effects were nasty. Nice to see so many supportive spoonies here :)
spiftacular I "probably have" CFS (as my doctor said) and I'm going to the doctor about me having TMJ tomorrow. I also have undiagnosed heart problems (that I haven't told the doctor about yet...), Ehlers-Danlos Syndome (kind of diagnosed) and many more conditions. They put me on amitriptyline as my nerves have messed up but I took myself off of it. I'm now on venlafaxine which sucks even more (for me). Anti-depressants are the worst.
I have found that using "The spoon theory" helps to best explain to those that don't have it.
I use "spoons" when trying to explain how my autism fluctuates :)
I was trying to figure out how I missed this video and I checked the date and realized I was in the hospital giving birth to my son. good excuse, hahhaha.
This made me cry so much. Not because it really upset me, or because I feel really bad for Emma and all of the people saying they relate (even though I do feel really bad for you all) but because, even though I don't have chronic fatigue syndrome, I related to this so much. I relate so much to that sense of relief when I realise that yet another thing I thought I was just a shit human for-like my inability to get excited for things, or that it takes me so long to get out of bed in the morning because I am exhausted, or most of the stupid stuff I feel, is just another symptom of my depression, I'm not just completely useless. Thank you for this video Emma 😊
hi darling i'm so proud of you
***** BERINA
what is it soraya
***** notice me senpai
okay i just have
***** THAT'S RIGHT
Was the penicilin you were given for your tonsilitis an amoxicilin? I ask because mononucleosis can be easily mistaken by doctors for bacterial tonsilitis and in patients with mono amoxicilin causes quite severe rash, which could be again mistaken for allergy.
I ask because mononucleosis would fit perfectly in your story as CFS is known complication of mono.
Also, thanks for the video, it was very informative and I hope that with time you will only be better. :)
Oh my god... yes it was. This changes everything. Wow.
Interesting about mono and amoxicillin, as I had a reaction to amoxicillin in high school even though I had it many times as a kid. I don't recall what I was taking it for but broke out in hives, etc and I do recall having mono around the same time(20 years ago so memory is bit fuzzy). Wonder if I'm not allergic to penicillin after all, although my sister is, so its not something I'm going to take a chance on. Fortunately, as far I as I know I didn't develop CFS.
+Mateusz Sarnat Do you have any more sources on that?
(I had what I thought was nasty bronchitis a year ago, was given amoxicillin for a week, 2 weeks later had a nasty rash and always felt a little bit more unfit / tired since then)
+Squeak Code To be honest that's knowledge I got from my microbiology and lab diagnostics courses. If you google 'EBV amoxicillin exanthema' you should find a lot of sources on that (sorry for not including one, but I think youtube comments dont allow links)
Mateusz Sarnat Thanks! :) Does the rash cover the whole body? My rash was pretty nasty (like the ones in the photos, maybe even bumpier!), but only confined to some body areas.
Liking this video to show support and acknowledging your bravery, not to like the fact your suffering. Chin up Emma!
i feel completely overwhelmed watching this. i was diagnosed with CFS 4 years ago and have had trouble explaining to people what it is since. It's hard to make people understand it's not laziness and i really appreciate you making this video. you described how it feels really well and if someone asks me again i will show them this.
Hate how long the NHS take to diagnose sometimes!!! >:l
NinkComPoop I'm sorry to say but six years is actually short time to diagnose a young person with CFS. I had to be nearly 30 and suffering for fifteen years before doctors stopped running two tests and giving up saying I just needed diet and exercise.
It's not just the NHS
Love you Ellie
My dad works for them. There isn't enough bed for people to be there. So thats one problem. And money is another. But he isnt a nurse and doesnt do operations
Ok well my mum is a consultant (doctor) for the NHS and beds are not the problem with diagnosing ME. It's the fact that there is no way of proving a patient has the illness.
When I started this video I was like, "Yah, uh huh chronic fatigue..." But after seeing your raw emotion I knew this is a serious problem for you and others. I'm sorry I judged you in the beginning.
Yeah the name is quite annoying for many with the disease as it really doesn't capture the absolutely life altering affects it has on people. Glad you stuck by for the explanation :)
If you do some extra research you'll see this illness is one of the most debilitating and disabling illnesses you can get. We're talking bed bound, tube feeding, paralysis, complete isolation etc
I HATE it when doctors and teachers say that I'm lazy or that it's just my hormones.
I'm 14 and I've only just been diagnosed with CFS and severe CPS eventhough I've had it for nearly 2 years.
People refused to believe that I had Chronic Fatigue and Chronic Pain despite me showing obvious symptoms (Extremely tired for no reason, brain fog, muscle and joint pain, un able to sleep properly despite being so tired ect), they would just say that I'm faking being tired to get out of school, but I'm a nerd, I like school, so it made no sense. Even when I had to leave secondary school because I was constantly crashing from doing too much, that wouldn't believe me. I sent days in bed, unable to move because of how tired I was and my mother had to wash me in bed multiple times because of the pain. Doing normal day to day stuff was hard an painful (like washing and going downstairs). No one but my mother believed that I was in pain. I was left to suffer for 2 years.
This illness basically ruined my life, I had to leave school, I lost all of my friends, I became an under weight recluse with a Vitamin D deficiency and I was diagnosed with depression 6/7 months ago. But thankfully we left Kent and moved to a new area, my current GP referred me to a hospital in London with a CFS management unit.
I'm glad I was referred to UCLH because I am finally getting the help I need, I have a physiotherapist, a psychologist, a social worker and I am finally getting a tutor (I can only do 2 hours of school a day though). I ever have a walking stick to help me (Chronic pain is a bitch), my mother is applying for DLA and a disability badge so that I can get cabs to places as well.
Things are looking up for me. I can finally learn how to manage my illness, I can prepare for my GCSE's and maybe join a junior gym.
Hopefully my life will be better in a few years.
My mom has narcolepsy, so I understand completely what YOYRE going through. I am so sad that you have to go through that. I'm also an only child, so its really hard and lonely for me at times because my mom would be asleep a lot of the time. She tries to wake up but some days its really hard. But days like today, where she can wake up easily, its much better. I don't want anyone to feel sorry because I have a great family and my mom is GREAT! So is my dad. He helps her when she can't do much, and he is just a great supporter.
My mom still works, if you were wondering, but she has to do it from home (writer/blogger) because she can't handle the hours of teaching, Which is what she used to do before diagnosed.
She is so sweet and I love her so much, I'm just happy her case isnt worse. She may sleep just about 4 more hours than average, which is great. And I'm blessed that I have a great family.
But, Emma. Although I'm not experiencing this first hand, I do understand what you're going through and i am here for you.😇💖
Aw! mom is EXTRA sweet and nice
Take not that i said my mom and not ur mom
*note
oh wow, what do u mean? Drama Deja
Lauren Jewel i mean i stole your mom even if that means I have 2 moms now, mwahahaha
So brave of you to make this video Emma. I may not have been 'diagnosed' with CFS yet have another condition that causes similar fatigue symptoms. This video brought tears to my eyes, especially since the psychological effects are equally hard to deal with, the social ostracism, the loss of hopes and dreams, the self blame and shame. Of course we want to have productive lives. Everyone thinks they have an answer, 'if you just do this, that or the other' when often what's needed most is just a little compassion and understanding.
I feel like i may have a mild case of CFS but it could also be depression. Don't know how i'm gonna be able to differentiate that
If you can please go to a doctor and describe your symptoms. If you don't feel like they're listening to you please don't stick with them. I know its hard especially when you can barely make it out the house (I have cfs so I do understand at least a little) it could just be something like vitamin D deficiency or anemia, if you can ask for routine blood tests for fatigue causing things. Don't put it off even if you do think it's "just" depression they have good ways to manage that. :)
Go see a doctor you sexy so and so
It'll work out :)
TheHawki235 CheerfulSmilingEd Thank you both :) I will make a doctor's appointment soon and see what i can find out
Brendon Way woo go you! :D update me if you feel like it :) I hope it goes well for you :3
Brendon Way Hiya, i feel much the same way except i've been diagnosed with depression but i have almost every symptom of CFS.
Defiantly visit a doctor and good luck :)
the only thing that have is GFHATT
GETTING
FUCKING
HEADACHES
ALL
THE
TIME (also painkillers are shit for me)
SuperSerbian Also hay fever
and a few pumps to help me with it
SuperSerbian I was like that before I got my glasses. Have you had you're eyes tested?
i need glasses but i don't have them
go to your GP and ask for a histamine blood test
i was like that for 1 1/2 year but with medication and eating food without histamine i'm fine
go to your GP and ask for a histamine blood test
i was like that for 1 1/2 year but with medication and eating food without histamine i'm fine
Well that doctor sounds like the NHS. Exactly what happened to my dad when he slipped discs in his back over and over again. It took 20 years for a doctor to give him an MRI and it said he'd lost a disc in his back. Well done NHS, doctors need to be better trained in England at recognising these things
dalek735 sorry to any doctors out there, just showing all my experiences and experiences of my friends
The NHS can't give MRI scans to everyone who says they have back pain. 20 years is a long time, I accept that, but to the doctors it was more likely that your dad had a constant muscle pain from heavy lifting and would just require pain killers so they went through the more likely options first. I guarantee people with lung cancer have gone years without treatment and have just been given antibiotics for their cough, it's the same sort of thing. I mean no disrespect from this, I'm just trying to help you to understand why things like this happen but I agree that 20 years is way too long for your dad to wait
All they said was that he was getting old, At 21 years old
One time, they put a cast on an internal infection. good job
dalek735 the same stuff happens in america too. negligent doctors are everywhere. i'm sorry your father had to go through such pain.
This is a massive boost for the CFS community - thanks for help getting the word out. I have had CFS for about 3 years now so I know it can be really hard to explain to people to help them understand but videos like this make life a lot easier as people actually understand what you have x
First Iwata, now this. ;(
Yeah. Past few days been so bad. Emma, we still think you are amazing! Soldier on Emma, we are here for you.
Don't forget Lenard Nemoy (Mr.Spock) T-T
Don't you dare compare a slightly limiting condition to cancer taking the life of a relatively young man you arrogant little hmfphf...
***** Emma, I only found you a week ago but you are already my favorite TH-camr. The stuff you go through, the haters, this syndrome, etc. It is easily said that you are one of the strongest people in the world today. You deserve the spot of a role model. ;)
Jamwamee We're not, we are just saying that both things are upsetting, I understand the death of a great man is more serious, but we just mean they are both sad, and yes one is more sad than the other.
I might actually have this as well.
I find myself quite tired sometimes when all I've done is sat around all day. Also, there's been a few times where I did weird things and didn't even remember doing it.
For example, and I know this is going to sound like I am just copying emma for some reason but I am completely serious, I also put my phone in the fridge one time. I turned my room upside down, looked all around the house, asked my family multiple times, then I got in the fridge to make a sandwich and noticed my phone sitting in the drawer with the cheese and lunch meat.
I also went to the fridge to get some soda one time and then went back and sat down at my computer and a couple of minutes later I stood up and went over to the living room and my mom was holding the milk carton. I asked her why she was holding milk, and apparently what I ACTUALLY did was I went to the fridge, grabbed the milk, handed it to my mom, took out the soda, poured a cup, left the soda out, picked up my cat and held her really tight for about 45 seconds (while my cat was apparently freaking out), then went and sat down at the computer. Pretty weird.
Trophonix "I find myself quite tired sometimes when all I've done is sat around all day."
Obviously you're tired after you sat around all day, get some exercise. No hate.
Xi
I mean like, someone asks me to help with something when I've not done anything that day and I feel like I've been lifting weights all day or something.
Don't make assumptions, I do get exercise and do things. I'm just talking about some situations where I shouldn't be tired but I am.
self diagnosis is not that good of an idea because usually the patient assumes the worst case scenario. maybe you have memory problems. you could always go to a doctor and get a diagnosis.
ropelli321
Oh yes, I know, I don't claim to know for sure, only that I have had a lot of the symptoms of it before (I looked up the symptoms). There's a number of other things that display similar symptoms. That's why I said "I might" :)
Oh, and I think memory problems make you not remember things very easily, they don't make you do weird things like hand people milk jugs for no reason.. (I think, I'm not a doctor or anything lol)
I also have a sleep disorder (delayed sleep phase syndrom) and its very self explanatory. My inner body clock is switched around and im practically nocturnal. Being in 7th grade i need to get up every morning for school. On good days, i can get to sleep at around 7:00 AM after being up all night, and wake up an hour later for school. Many times i stay up all night tgen go to school, then go to gymnastics (do not attempt! I have broken bones doing gymnastics running on 0 hours of sleep) then get home at 7 and pass out. Homework for all classes usually gets done during first hour because my teacher knows about my disorder. Im not usually hungry when im this tired, and doctors have tried to diognose me as anorexic because of my weight and going days without eating. But i know im not. I dont have an eating disorder, i have a sleeping disorder. Its like living in a hase. I also have been diognosed with anxiety and depression. Dont pull all nighters kids. It could lead to something much wors
That sounds terrible, good for you that you push on!
I love you Emma! You're so strong. Please never give up!
Also, I just wanted to say something to your viewers. PLEASE DO NOT SELF DIAGNOSE YOURSELF. Go to a doctor, don't just assume things :) that's all
Ella Waters oh you don't say...
Your profile pic!!!!
Right.
Also remember SOME PEOPLE CANT AFFORD A DOCTOR OR THEIR PARENTS DONT CARE/THINK ITS NOTHING keep that in mind to :)
Miraclelittlepie I feel like its very dangerous to shrug off another illness as CFS, fatigue is part of lots of other ones. Its always better to at least be checked out by the doctor for normal illnesses BC then you know you're not going to die. You are right though about money, but we shouldn't just ignore treatable illnesses if we don't have to :)
So nice hearing this coming from someone else's mouth, but also so sad.I have had it for 4 years, I am now 17.I am just starting to come out about it on my channel because it's SO important, for the uneducated to learn, the ignorant to wake up, the people that don't understand to fricken understand and families to start supporting.I have a moderate to extreme case, but I was diagnosed by a paediatrician who has left now. Other doctors aren't so understanding
For everyone offering suggestions for treatments and remedies, please don't. It's soul destroying.
Every man and his dog want to offer their 2c, but it costs us so much more of our very limited mental, emotional, physical and financial resources. And each failed remedy makes the next one that much harder until when perhaps one that might actually help comes along and you just can't bring yourself to fail one more time. Unless it's back up by credible studies and is reproducible, don't.
I know you mean well and want to help, but don't, not in that way.
Emma, Why is this video now unlisted? Along with the how to do TH-cam videos. They were really great!
depression does NOT trigger CFS. CFS may trigger depression, but other than that, they have no direct correlation. the symptoms are extremely similar, but for different reasons.
Be strong Emma!! My sister was diagnosed 4 years ago and I can't imagine how bad it must be for you guys. She is 16 and one of my role models. Don't give up!!!
After watching this I'm really worried about myself, I'm always exhausted and I can never seem to get enough to sleep. Like today I got home from my dance at 1 and fell asleep at about half past until 6 and missed the entire day, on Wednesday earlier this week I got in at about 5:30 and slept till 8ish. I fall asleep in my lessons and it's awful. I have had a history with eating issues so I know my eating habits aren't always 100% normal or healthy, and I'm hoping that that's the main cause. My muscles are constantly aching as well though, I'll wake up with my back covered in knots daily (I go to an oestheopath every 3 weeks anyway as my shoulder blades are wonky - long story, for a sports massage) and with my leg and arm muscles all sore. But I don't know if I'm just paranoid. I've als got super pale recently, like I'm 2-3 shades above my old foundation lol. So I'm thinking maybe I'm anaemic as I don't eat any red meat and virtualy no green vegetables. Any ideas would be appreciated.
In terms of absent mindedness as well, I'm always putting milk in the cupboard and cereal in the fridge and stupid things like that and then finding it like 3 hours later, but that's probably just because I'm thick so idek
I can't tell you what you have but I think you should really go to a doctor and they will probably request you take a blood test, which will show up anaemia. If it does then they'll probably give you iron supplements and that should make you feel better
+Meg loves You sound like how I was in high school. I had anaemia and also very low vitamin D. I'd recommend getting a blood test to see how both your levels for iron and vitamin D are. And if it comes back clear, you can look into it further.
***** I don't mind at all :) yeah it definitely improved things. You'd also need to take vitamin C when you're taking iron supplements because that helps your body to absorb it. Also, try your best to get vitamin D from the sun (depending on where you're from or what time of year, that can be hard to do though). You're supposed to get about 20 minutes of sunshine a day and your body best absorbs it in your upper arms. Hope this helps a bit!
+Meg loves Go to the doctors and ask for a blood test. It may be anaemia but it could be a couple other things as well. I have Under-active thyroid and i had very similar symptoms before i got my meds. Paleness, tiredness, sore muscles, sleeping for 12+ hours. And im a vegetarian so everyone thought it was anaemia at first.
I definitely suggest getting a blood test because it could be very serious, and even if its not, its would be a relief not to worry about it!
first of all this isn't a joke but a genuin question, does caffeine concentrated drinks, like strong coffee or energy drinks help you at all when you feel tired ?
No my friend had it, in her case nothing makes it better.
clemmie oliver that so strange
bryanFDNY Caffeine can actually be worse for you when you have a disorder like this
bryanFDNY Well caffeine works by widening blood vessels and blocking hormones responsible for "making you tired". This disease, even if it's not known exactly how it works, seems to have nothing to do with those standard processes and as such caffeine being ineffective is fairy logical.
Anton Badner I meant fairly, of course, there are no wands or sparkles involved in this.
I have it and ADHD so it makes for a weird combination.
So attention deficit hyperactivity disorder and chronic fatigue syndrome, well that will be fun for school
I have diet related fatigue and ADHD. It's often hilarious. My friend calls me vodka redbull.
and i thought i was special cause i recently got diagnosed with ADD
Thank you for making this, so much. I've just been diagnosed with moderate CFS, and it is thanks to your videos that my sister believes both that the illness exists and that I'm suffering. Thank you for spreading awareness.
I'm so sorry. I have A.D.D. Something really weird about A.D.D. Is that coffee will have no effect on me. If I drink coffee that will make people like me with A.D.D. It will make me feel relaxed. Most people would think that A.D.D. is terrible but, I think it's fine but. I've had this all of my life so I really wouldn't know what life is without it so I can't really be sad about it. if you don't know what A.D.D. is it stands for attention deficit disorder. Which basically means I don't pay attention very well. At school teachers are really hard on me and they don't know I have A.D.D. so I just wish I could tell them and get them off my back. I'm going into 8th grade and that's really scary for me. And also I am the youngest kid in my grade. I was born in August and I just made the 8th grade. I'm not trying to make you feel bad for me I just really wanted someone to talk about it. Even though no one will probably even bother to read this but, it was nice to just let it all out.
I have ADD! I take medicine for it. it's not the worst thing in the world.
but if you need any advice or something,
you can email me @ dejaadaavis@gmail.com.
im Deja!
Same thing my mom says i will get hyper but wen i drink it im calm
I have ADD too and the coffee thing is so true! It has no effect on me! Neither do monsters! Except those Java monsters they make me shake! And I am really happy to say I have been off meds for a year and it's such a relief to know that I can do this without the help of chemicals and pills every morning! Good luck in school! You will do fine!
Same here. A can of monster puts me to sleep. I'm aspergers though not add.
***** I've lived with ADHD and Aspergers all my life, and it has been complete hell because of it so saying
''It's a complete myth'' is fucking buillshit, 1 in 10 people have ADHD/ADD. You learn how to control it the older you get, stop filling these kids with lies. When I was younger I was the same, I could drink things with caffine and it had literally no effect on me, now it obviously does but not to the point where it makes me feel more energetic. Stop acting like everyone elses mom and fuck off.
Ahh, finally. I always thought I had some minor form of CFS and when you basically described all of my symptoms (a while ago in another video) but said you *didn't* have it, I was so pissed off that I had *yet another* problem I couldn't deal with effectively. It gives me hope that you actually have it XD That sounds bad doesn't it I'm sorry, I just mean I #relat or something and it's a relief to know that someone I've been watching and relate to on that front actually has what I'd convinced myself I was lazy for. I've never had an illness like you (to my memory) but I think mine's probably a side-effect of super-bad anxiety idk
I've kind of learned to ignore it for the most part? Like I do actually "work through it" which I think will bite me in the ass (and often does) because it means I go days generally forcing myself to do stuff despite being exhausted and then just get worse and worse until it clashes with my anxiety, makes my partial insomnia flare up, which makes the fatigue worse and leaves me near-suicidal (especially during college when I don't have a choice but to keep working) but w/e haha I'll deal with that later. Just like everything.
Although on the other hand it could just be that I'm overworking myself and not giving myself enough time to recover? But if I stop being active and just do nothing for more than a couple of days I get depressed and that makes me even more tired and I do nothing for months on end, which becomes years.
And I self-diagnosed with ADHD which could just be CFS? Fuuuck. I'm so confused. Could something be *right* with me for once please?
***** Ah, that'll do it XD Good luck waking me up after xx
Hey I've just been reading through the comments and I found yours here, sorry for the intrusion. I just noticed you said you 'fight through it' when talking about feeling ill and my NUMBER ONE advice to people who are suffering from a chronic illness or think they could be is DO NOT FIGHT IT. If you think you might have CFS/ME it's so important you choose your battles VERY carefully. If you need to rest, please rest. PLEASE. It will set you back so much more if you don't. I have been a sufferer for 5 years and it took me so long to stop my stubbornness and stop fighting tooth and nail to feel normal when my body wasn't normal. Please find help if you think you need it and please be kind to yourself. Sorry if this sounds like I'm having a go because I'm not. I'm just stressing the importance of listening to your body, taking a break and picking your battles. Xxxxx
Yeah, I guess so. It's just hard when my anxiety is constantly telling me "what if you're just lazy? What if you forget to do this later? What if you can't focus on this later? What if you sleep for too long? What if you nEVER DO ANYTHING EVER AGAIN?!" and it's so annoying. Because I stop being productive whenever I have holidays, I end up overworking myself instead because I'm convinced I'm not doing enough (something I'm certain was ingrained in me by one particular asshole in my secondary school years -_-')
It get particularly worse at college, when I'm barely functional every night but I have trouble waking up in the morning (no matter how much sleep I get. And some mornings I get panic attacks if I try to move too quickly??), so I end up fighting with my brain over whether or not I should stay awake, because all of the above makes me panicky beyond all belief and I often end up not sleeping *at all* if I have to get up early which, as you'd assume, just makes the whole thing a million times worse. And eventually I *do* have to take days off college because I'm just too tired/anxious to function, and I can't say "I'm anxious" or "I'm exhausted" because they'll either ask me loads of awkward questions the next day, or think I'm just making up excuses to bunk (seriously. I told them I have anxiety and it makes it near impossible to come in some days, and they still told me there's no excuse), and there's only so many illnesses I can come up with before they know what's up. Which is basically what happened and, like I said, they lectured me on how it's no excuse, which sends my already-high anxiety off the roof. I honestly don't know how I'm gonna survive another year of this ugh. Luckily it's the holidays right now though, but I still have the problem with productivity ugh.
But yeah sorry for the ramble, thanks so much for being so concerned about me I'm not even important haha x
Your anxiety is most likely caused by CFS. It's your brain's way of trying to get you to stop what you are doing and rest. When you have a panic attack if you get up too fast, that's your brain going, "oh shit, I haven't got the energy for this" it then releases a surge of adrenaline to replace energy you don't have, which causes the feelings of panic (adrenaline surging through your body). I've had ME/CFS and associated anxiety since 2007. I know how hard it is to stop thinking anxious thoughts but you must try and relax. Breathe, meditate.., I know this sounds like woo-woo shit, but it's only in the last 6 months I have started realise the benefits of calming the mind and relaxing the body so it can start to recover.
ArtJourneyUK Well I had the anxiety before the CFS (waay before), but I see what you're getting at; the bit about my morning panic attacks especially makes sense actually. And yeah, I used to meditate a lot but now I can't get my mind to stay still for long enough; I get super restless xD But I should probably start doing that shit again. Thanks for the advice x
Dan Hardcastle has this too doesn't he?
Yes he does
Dan and Kaeyi (inthelittlewood's/martyn's girlfriend) both have it
Dramatic beast43 Ex-girlfriend. Sorry to break it to you.
***** I forgot to put the ex part on there. I know they broke up. What is it with awful things happening to youtubers this year?
I know right D:
I'm so happy you made this video Emma. I had glandular fever earlier this year and I'm always super tired.
Have your parents ever noticed?
Like other parents, they probably told her she's just lazy.
HumanBehindMask I find that hard to believe with her dad. I don't know much about her mom, but her dad seems to care quite a lot about Emma, like any normal parent too. Parents understand a lot more than we give them credit for.
She said earlier on in the video that everyone in her life believed she was just really lazy...so they probably noticed but didn't think she had a condition, and maybe thought she was exaggerating and stuff :/
She did mention something as well, when she was talking about it effecting relationship, something about it being hard dealing with her parents.
From my own experience it didn't matter that i'd been diagnosed with it. The parents still didn't understand it any more than they did before. It didn't stop them expecting me to be able to do whatever made up amount of stuff they felt I should be capable of doing. It was essentially "we get that you're effected by this but you have to blah blah blah" like I didn't know already that it's fucked up my life.
Not that this is how her parents are acting, but that's the sort of general "understanding" I've gotten from most people
McNotAllThatFreaky Her father cares about her and he might've noticed but like most the parents he probably simply assumed she's lazy.
I don't really blame her father though, Chronic Fatigue Syndrome is not that common, so assuming that she's simply 'lazy' is understandable since her CFS isn't that severe.
You don't have moderate cfs, you sound like you are on the low side of mild. You can go to America? Walk around London? Do your washing, cooking and everything else that living alone entails? Also you can run your own successful TH-cam business.
I have moderate cfs and I am stuck in bed 70% of the time. The rest of the time I am sat in a chair. I have to rely on people to do the majority of day to day tasks.
Its good that you are bringing awareness to this illness, but please don't overstate your illness.
Agreed. I'm moderate and I'm lucky to get 1 hour a day to shower, eat etc. Wish you well x
PlayinArse In the video she says that her doctor has diagnosed her with moderate CFS, so she's just repeating her diagnosis.
PlayinArse
You would tell 200k people to go against doctor's advice and ask Emma to self define despite her saying she didn't want to do that? Don't be angry at the world because your surname is arse.
Go to Dr Sarah Myhill. She is supposed to be the best cfs specialist in the UK. She's worked wonders for loads of people I know!
does she also work wonders on peoples bank accounts too? like large amounts of money appearing into her bank account after a few visits?
ropelli321 depends whether she works private or NHS!
Maiscout I saw Professor Julia Newton recently for my ME, also - she's NHS-based so it was free to see her and she really helped me as much as she could despite me not living in the area (I travelled a really long way to see her!)
ropelli321 No need to be rude when I was just trying to give a suggestion.
I have no idea how much she costs. She is private so I assume not cheap, but just because someone is expensive doesn't mean they're not worth the money. It's hard to get a good ME specialist on the NHS so I was trying to be helpful but nvm.
ropelli321 some of her advice for supplements is helpful but you really do have to take everything she says with a pinch (or two) of salt. She puts a lot of helpful (and some unhelpful but she's helped me I'm just very wary of her tbh) info on supplements like d-ribose up, and if it helps some people we might as well just let it be.
I am glad you have eventually got diagnosed, it must be a relief. It took me 7 years to get diagnosed with one of my conditions & 10 years for another, both are invisible illnesses too; it was so frustrating the doctors not taking me seriously while I was suffering more & more.
I appreciate you being candid & letting others more aware of invisible illnesses. I hope yours doesn't get worse & hopefully improves.
I just started crying watching this. My results are normal, always, but I feel so awful all the time. I have to talk my doctor again. Thank you so much. Your story resembles mine a lot. Thanks again
Around a year ago, I had a brain haemorrhage which caused me to have severe fatigue, but it was a short term effect. I was diagnosed with brain cancer after that, and was told that the radiotherapy really could knock you out, and I basically did nothing but sleep for two weeks! Having it for even a short amount of time was frustrating and annoying, so I can't imagine it being an everyday thing you have to deal with. Sending lots of love to you, Emma xx
I am amazed at how you can make a video on really bad days! I have had CFS for 8 years now. I have been wanting to make videos helping people on CFS or even for people who are struggling with the fact someone in their life has it. It's so difficult living with this illness. I've been so ill I have been struggling with even walk to the toilet myself lately. This illness isn't only crushing to yourself but people around you and I am in awe at how you can still make videos as good and informative as this!
My friend at work told me to watch this video after I spent a day struggling at work with my Crohn's disease and was pretty much in tears because I felt so useless and was frustrated with myself. I get annoyed with myself as I feel like I should handle my illness better. I should be stronger. After watching this I realise that I'm not alone. There are times when I will struggle and other people are doing it too. From watching this i'm taking away that I should probably be less hard on myself and that I'm not being a burden because I actually need help. This video was brilliantly helpful for my head and easing the crazy things that go on in it. Thank you for making it.
I know your feeling and relief. When I was diagnosed with Autism last year it was the greatest thing to have ever happened, because I finally discovered me and finally found out who I was am. It took 5 years and I'm 32 next week (October 15), it was a long struggling road, but it was worth it, and it was worth it for you too.
Thank you for speaking out. I've had it for about a year and I'm sorry to hear you had it so young. You inspire me to go back to making videos
You have no idea how much hope this gives me. I have those same symptoms and I just thought that I was lazy and I usually feel really shitty. I have pretty severe anxiety that I'm taking medication for, and I thought that would make me feel better completely, but I'm still tired most of the time and I can never think straight. Thank you for sharing this. I'm practically in tears just thinking that there might be a reason for all this.
Having an invisible illness really fucking sucks. You're super brave for opening up about it. We're here for you
Going through school with this when you're 15 is absolutely hell.
I'm lucky to have teachers that understand a little but you know how school is, they still give me stuff I shouldn't get.
And it's so horrible with people not understanding what it is and what it does because they get angry and they say mean things and those mean things just makes you feel so much more shit and you get tired from that!
Thank you new youtuber I've never seen before, thank you for making a video that I could look up as I'm laying in bed after my mom got really angry about me not being able to go school, Thank you Emma.
Like, it's just a video and blah blah, but hey! The feeling you get after feeling that no one else understands and then finding a video like this is awesome.
So, if you'll excuse me, I'll take a nap.