Honest Vlog - Living with Chronic Fatigue Syndrome / ME
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- เผยแพร่เมื่อ 23 ก.ค. 2014
- I talk about living with ME and how it affects my life - would love to hear from other sufferers.
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I’ve had Cfs since I was 17, so ten years now. I’m now a 27 year old man and my symptoms have improved over time. When I first got it I was depressed for what had to be 3 to 4 years, but once I got fed up with it and hit my mid 20’s things turned around significantly. Things I’ve figured out - meditating, eating extremely clean, walking for exercise, hobbies are super important, and family ( close relationships that take work). Things I’m still working on - how to make money because the symptoms are so unpredictable, friends and girlfriend. Now that I think about it I should probably make a channel.
Been sick since 1978. It affects *everything;* physically mentally, emotionally and spiritually.
i hope the doctors figure this crap out soon. its a very dangerous situation for people to be in.
511chaddy me too! x
@@SophieEggleton Im not sure if I have CFS, what I know I have dealt with and deal with still is dizziness, headaches, sleep disturbances/fragmented, ringing in the ears, light sensitivity, blurring at times, tired feeling even after sleeping (usually around torso area) achy shoulder joints and palpitations.
What I am going to do about it is ordering a auto immune panel, chiropractic sessions and consult with different types of doctors that look at the body in a different way than the current medical people do...had to deal with Covid19 too
Yes it is very a dangerous position to be in especially when you're driving and you can't clue into the fact that people are going to pull out in front of you. Accident waiting to happen
Doctors are hopeless. They know nothing about CFS despite it effecting so many people.
Its good to know I'm not alone :/
You are definitely not alone, a lot of us out there that need support and understanding xx
You're not! Fellow spoonie here!
Me too.
It's so nice to see im not the only one feeling this way! I found out 7 months ago I had Cfs ...just after starting my dream job in London full time. It's probably one of the toughest times of my life. Working 12 hour days constantly feeling absolutely shattered. Cfs is bloody awful. I also had glandular fever when I was younger, and ADHD - apparently really common to then end up with Cfs. Someone said its not that we're lazy it's that were burning ourselves out. We're the opposite to lazy! I've found eating healthily is really important. Not skipping any main meals (I get sick the minute I do) - which is hard when you just would rather sleep than eat sometimes. Also bed before 10pm really helps when you can feel yourself becoming drained. Sometimes though it doesn't matter what you do or how much you sleep you can't recharge. If anyone else has any tips or things that can help the insane exhaustion please message ! Thanks for the vid tho, it's made me feel a little less isolated...
Katherine M Hi, I have many many many tips that will support recovery. Firstly i will say, Meditation (actual mediation where you let go, in a relaxed state) is proven to be 4-5 TIMES MORE RESTORATIVE THAN SLEEP. I normally meditate anywhere from 1-4hours a day as a part of my healing routine. I know that wasn't advanced or anything, but many people over look it. If you would like to hear tens and tens and tens of other things feel free to respond to this comment.
Something that will help me, what % of recovery /full health are you at?
Hmmm...wonder if the hyper activity from ADHD, basically your system is in overdrive, “burns your motor out”?
Research Medical Medium, he has the answers to heal cfs and other chronic illnesses
@@lisaeuler9340 No he doesn't.
anybody would be exhausted working a stressful job in stressful london for 12 hours a day. lots of pressure. it's your lifestyle and job that's exhausting you.
I've had this for 10-11 years now and I'm doing well now and here is what helps me.
-Less time on the computer
-don't watch movies / or anything intense .. it's draining
-don't play intense video games
-bed before 10pm, lights off and listen or read a book. (basically, fix your sleep, it is THE single best thing you can do wether you have CFS or not.) don't think because you are asleep 8 hours a night that makes it restful sleep.
-I cut out all foods I thought where not contributing to health.. aka nearly everything, it sucks but life with cfs sucks even more. (Dairy, gluten etc)
-I don't wear any dedoriant as I noticed it was giving me lumps(Lypmh nodes) under my arm pits which is a really bad sign.
-Drink only water and maybe a probiotic like water kefir
-saw a psychologist, it helped
-see a chiropractor, get someone that can do your trigger points.. my chiro said I was the worst case she has ever seen in her career (go figure, i felt like utter shit.)
-be mindful of your body and how it reacts to situations, I walked around with my shoulders tense allday without knowing it until I saw my chiropractor.
-Eat enough calories++
-be thankful for what you have(this is something I think about each day, just to practice gratitude) - you are most likely more lucky than 99.9% of the generations that have lived before us 10,20,30 thousand years etc. And you are most likely more lucky than 99% of the people living on this planet right now.
I really dislike it when people say supplement 'x' cured me. It's all fucking bullshit. CFS is a overall burdening of the body to the point where it can not cope. CFS is not caused by 1 variable. Wether you know it or not, whatever you did before CFS is why you have it. You need to hall over your WHOLE lifestyle then you will start to go in the right direction. I think mine came from over exercising, eating under 1500 calories a day for years, given antibiotics for acne(which is incredibly stupid) which destroys your stomach if you do not have an infection and being emotionally depressed and insecure from acne.
STOP looking for health like I did for many years in the next new supplement, it doesn't work and it NEVER will.
I know how you feel. completely. The worst part for me is my family crumbled in the worst way possible whilst i was recovering. I have no one to talk to about it, and the whole time I have been suffering no one believed me. I've been suicidal in the past 8 years, but I've come through it a strong person.
I just finished your video sophie. alot of the time I've felt as though cat has caught my tongue, it really does feel as though I can't open my mouth. It takes considerable effort to bother talking. it's hard to explain. like you said, people think you're not being very talkative but they just don't understand. hope everything is going well for you
I've started a youtube channel and i am talking mainly about how i overcame cfs. check it out, it might help you! and I will answer any questions
banana boy Dude...thank you for writing this...I know exactly what you mean...brings tears to my eyes...this shit is very lonely. I'll sub ya
TheCausation I cured myself. I do not see how I contradicted myself..??
Fuck the goof BB...I found out a couple days ago what I have....Epstien Barr virus. I've wanted to chat...but you know how it goes when you're feeling like garbage lol
rh1
Thank you, thank you, thank you!! I am a CFS sufferer and I'm so glad I found your video! It makes me so happy that you are opening up and talking about it! Hope you're well, much love xxx
after nearly a year of struggle with doctors to find out whats wrong with me, mine has today referred me to a ME/CFS clinic. I'm really scared, I've never been good at expressing how I'm feeling, most of the time I feel like maybe I'm being overdramatic or a nuisance but I came across your video and its like you found the words I couldn't, especially the passing out and the brain fuzz when your body just goes. I dunno, I just wanted to say thank you for making this video, I've subscribed to your channel and I look forward to watching more when I can :)
Thank you so much for sharing this! We are always here cheering you on!
Oh my god Sophie. I can totally relate to all of this. It's so difficult to go through. I have it quite severe at the moment and the isolation and not being believed is definitely the worse thing for me. I hope you have improved!
This video is so helpful, this is my entire life in a nutshell. I was diagnosed 6 months ago so I still have to constantly explain myself to family and friends and it drives me absolutely insane. Hopefully showing them this video will help them understand!
Thank you for posting this. I'm 33 and have been living with my diagnosis since I was13. Like most multiple diagnoses and treatments have come through the years. This is the first time I've witnessed someone else living with similar fears and trials. I have found strength in your honesty. Wish you the best.
Thank you for being so honest. I'm currently going through the process of hopefully getting something diagnosed, possibly ME, after struggling with my extreme tiredness for over 10 years xx
My heart goes out to you and all those innocents who have this illness. I was afflicted with CFS 20 years ago. I have spent a fortune paying for hope of a cure without success. Without my loving and compassionate wife I would not be on Earth now. I do get frustrated with this illness being minimized. I do get angry with myself for getting sick and causing so much stress and anxiety to those who love me. But I have now come to accept that CFS will be with me to the grave. That is the only way some of us will be free of it. I truly hope that you will eventually be free of this demon and can live a normal and healthy life, and fulfil all your life's dreams.
About the friend part, so true..and sad in a way. I've lost my friends or "friends" because of being ill all the time. Wish you strength! Greetings from the Netherlands!
Buddy Buds sorry about that...the true friends will stay or be found. Sending strength to you too x
Sophie Eggleton Please help me ,im from India ....i feel too much fatigued every time for many years ,i cant travel ....im always tired ...many times even to talk , i dont have friends ...i dont know ,which doctor to go |
Bee Human I see your post. I care! I'm not Sophie, but I wanted to just say that you aren't invisible. I am too sick to help, but I'm sure Sophie will reply! Or someone else will see your comment. I understand. People finally saw me and my plight on Twitter. Many are able to help. Just use this - #mecfs and they will start talking to you. I'm sorry I can't do more.
Hi Bee, So sorry to hear your struggling. So sorry I can't answer your questions swiftly or at all, it's impossible to keep up with the amount of messages/emails I get while coping with the fatigue. I urge you to find online forums or the spoonie community on twitter who can help you and offer comfort and support when you need it. Keep going to the dr's untill you at least find one who will listen to you and take it seriously. Just finding a GP who is willing to accept there is an issue can make a difference, because so often we feel ignored or like people think we're making it up. Sending lots of love to you
Sophie Eggleton hello Sister Sophie I have severe chronic pain suffering and illnesses i have severe fibromyalgia carpal tunnel syndrome I have 3 buldging discs in my neck and skull bone spurs spondolosis degenerative discs disease I know I have 3 buldging discs in my lower back too bad I now have bad insurance they do not cover mri's which I need I have two shot knees my left knee had an acl reconstructive surgery a screw is holding my knee cap in place both my knees feel like they are going to collapse at times I am bedridden all the time I have a tyroid illness a gi illness constant bowel movements everyday I have high blood pressure high cholesterol a tyroid illness high diabetes I have severe anxiety attacks and depression I started feeling bad in my 20's now I am 45 feeling now I am 145 I just had a Neucluer stress test done and an echocardiogram done I have to go on Friday what's going on with my heart I just am in too much severe chronic pain suffering and illnesses i know i am missing some more but I get fibromyalgia fog ALOT I can not understand always feel stupid now I used to be a veterinarian technician and a licensed pharmacy technician now I am the pharmacy I really miss my jobs I just can't anymore and i am getting worse andworse as the days months and years go by keep me posted on your progress much love MAY GOD BLESS YOU ABUNDANTLY MY SISTER IN CHRIST!!!! ♡
Sophie - thank you so much for your honest & candid Vlog (I love how you say chatter!) that describes this Syndrome/ Disease so well for so many of us. It is often indescribable about what our lives are like and until you've officially been diagnosed or have the "light bulb" moment & realize what you are truly dealing with it is easy to say the overwhelm can be all consuming and there are so many people who just don't understand it. Trying to spread Awareness is so important. The fact that you mentioned to people that it's important to check in on people is also so critical because like many of us we have lost many friends and relational ties to people who were important to us but no longer check in. It is so true what you said about perhaps we don't want people to know or make people feel bad for us or want attention but the loneliness can be extremely devastating. It's difficult to want to talk to people about it because of the fear if more rejection. This is so very real and life altering. I am a Mom of 3 (ages 22, 20, 17) and I've missed so much of their young adult lives from being so sick. What is worse is the knowing that they have needed their Mom. I have worked in Healthcare as a Physical Therapist for 25+ Years & can not work right now because the job is too physically & mentally exhausting. Caring for people is my life - I have treated many patients with CFS/ ME and Fibromyalgia and now I am trying to figure out how to care for the damage that has ravaged my mind, body, & soul. Thank you for being do candid and also leaving it open for suggestions on helpful tips. If any of you have Fibromyalgia along with the CFS look into the Protocol developed by Dr. Paul St. Amand. This protocol has helped many who suffer from not only the debilitating pain but also some fatigue sxs as well. I have been using it now for several months and it is helping. I also recommend meditation daily ( I sometimes have to do this for hrs ) and light yoga when you are up to it. I've also had patients as well as myself get good relief with gentle massage (Myofascial Release) and Accupuncture. Linda Hall of Linda Hall Meditations is a U-tuber who had/ has CFS/ ME & has excellent videos on Meditation for relaxation and healing. She gets it. Her voice is very calming and soothing. There are many others as well who I like as my go- too's for meditation. This has been critical for me to deal with the mental health aspects of this beast. The mere fact that knowing others exist with these sxs is honestly horrible to know but at least we know we aren't alone. I would like more ways to connect with others for support. Many of us have lost so much in this yuck. It is so important to show kindness and let others you know how they feel & you can try to be a source of support somehow. Now I am the one who has gotten too chattery! I read many comments when my brain allows me to & if anyone needs to reach out to me for a chat I will try to be there for you. Thank you again Sophie- you are a Beautiful Light and please keep making videos to help inspire & let others know we are not alone in this fight for our lives. 💪❤
Hi! i just got diagnosed on Wednesday with CFS. I didn't know it existed until a few weeks ago. I feel like I have lost a year of my life, but now I finally know what it is I can begin to start working on getting better. Thanks for making this video, it really helped to put a voice to the condition, even if I did cry through most of it
I hear your cries for help and understanding as I also have suffered for around 10 years
It started on and off but seems to be getting worse with age
The 2 things that bother me most are people not understanding and waking up feeling like I have just run a marathon
Wishing you all the best
Thank you so much for posting this. It really helps to feel like other people understand what you are going though
Thank you Sophie, I am so pleased I have found you having just been diagnosed, I have hidden away from it for a couple of weeks and probably avoided discussing it with anyone, but after watching this it has just summed everything for me including the IBS, it's the brain fog and black outs that scare me the most though as again in a well paid job that my biggest fear is now will have to go, I will keep following you x
Hey Rachael, So sorry to hear about your diagnosis, but there's a lot of us online and it's a great support system, so please don't ever think you're alone with this. Sending lots of love xx
4 years since having Glandular fever (really is theeee worst thing) it still creeps up on me so can relate to this even just in a small way- props to you for sharing this with the world! x x
Thank you for this. It is like you sat down to talk about my life. I sent it to my hubby hoping it will help him understand better. It's as if I am in perpetual mourning for the person I wanted to be. The trick is to accept who you are and learn to cope.
I know this was posted many years ago, but I am slightly knew to ME/CFS, and while I've read tons about it, there are so many things you brought up in this video that I experience that I don't find in the symptom lists and isn't really talked about. This was so very helpful to me, thank you for sharing this.
This hit the nail on the head especially the point about not having the energy to go into town (the city of London) to meet up with people, thank you so much for this video. It has made me feel a little more normal 😌
Hi Sophie, I have just been diagnosed with ME and I was reading about it when I found your vlog. I want to thank you for posting this and talking about your experience. I'm having the exact same feeling and I was blaming my self for being so lazy :( so thanks for sharing and allowing others to comment their experience and what has worked for them.
It’s truly relieving to see videos like this. Thankyou!
Just to know there are others out there experiencing the same hardships with chronic fatigue is so incredibly helpful.
I’m 22 and have been suffering with CFS for 3 years now. There have been slight improvements in my condition since I got slugged with that nasty glandular fever which turned CFS, but definitely not what it used to be.
Im not a medical expert and can’t claim this will be helpful for everyone, but a naturopath Is a high recommendation of mine. Especially for symptom management with things like IBS and other gastrointestinal annoyances. Also for you aches and pains try Epsom salts (magnesium sulfate) in the bath, won’t cure you but certainly helps the body relax!
It’s hard to be in this situation where we don’t have access to the treatments or support we need to return to our lives, but humbling to see that a community is developing around efforts life yours. Cudos and all the best :)
I am not diagnosed with ME but very similar symptoms, and my whole career was on hold, after 2 years I have given up on my general practitioners who kept prescribing anti-depressants, so have now gone with a holistic doctor instead - HUGE DIFFERENCE, she has already prescribed me Coenzyme Q10 and my bones and joints feel better already, I have also undergone thorough blood testing of hormones and vitamin D deficiency, and a natural hormone cream. I feel much better so wishing you all the best and thank you for sharing.
Hi Sophie, I just wanted to thank you for your courage & honesty. I'm watching this and it's like you're talking to me about my own life! I first fell ill with chronic fatigue syndrome 10 years ago when I was in 6th form. After a couple of extremely difficult years my symptoms started to ease and I graduated university and was working full time (unfortunately not in the area I studied but acting isn't really an option for me even when I'm feeling at my best. And that's heartbreaking in itself but it's just not feasible physically unfortunately). Then last year I caught a virus that was going round and it knocked me right back to square one. I was off work for 8 months but as my symptoms started to ease I've built up my hours & am now able to work part time. Every day is tough & it's even tougher when the people who are closest to you forget how ill you are because they've seen you feeling better in the past so just assume that because you've put makeup on & left the house that you're ok now. I don't know if you'll ever read this but I just wanted to share my story with you. Btw you don't look haggard at all, you look stunning! :) Laura
I've started a youtube channel and i am talking mainly about how i overcame cfs. it might help you! and I will answer any questions you have laura. Exact same with me, my cfs was at its peak in 6th form and I was getting new symptoms weekly until I had to drop out (2007)
I have had ME/CFS for 10 years but for the last year I've been getting steadily worse. I completely identified with what you were saying, particularly the emotions and the struggles of not LOOKING ill, and it's only the closest people to me who can sometimes tell I'm feeling rough. It's so sad that we're like this, but it's comforting hearing someone else going through the same things as I am because it's a very lonely condition.
"You don't look sick"...I swear if I hear that one more time...
I know how discouraging, demoralizing this illness can be. And, true, much of the world does NOT grasp how bad this illness is. But you DO help people who are dealing with this illness. Communicated awareness, and dialogue equates with support and spiritual encouragement. Thank you.
I'm 24 yrs old and I have most of the symptoms you are describing. Right now Im fighting to keep my job. I'm extremely bright but everyone at work thinks I'm a total air head. I just get fuzzy sometimes when I'm having trouble. The only pain I have is in my neck. I totally understand what you mean when you say that people dont understand! My parents would always tell me to get more sleep, get to sleep earlier, blah blah. They just dont get it. My biggest complaint is how it screws up my social life. I feel like my friends and family just thinks I'm uninterested in them. This weekend I skipped a family party and just got a load of nasty texts from them. I am planning to have major blood work done to see if I can fix this. I hope there is a cure for this. Let me know if you have had any success in treating it. Sorry if this was kind of a rant. Best of luck!
Peter Pan you just described my whole friend and family life they don’t understand and I am so hardworking but it’s just so hard cause I also have nerve pain and sciatica so it makes it worse too
There is no medical cure for cfs. But you can recover.
I hear you and feel your struggles.. Despite having a very busy life, very active workwise and sportswise previously.. suddenly I ended up in hospital and gradually lost everything I ever worked for or enjoyed, my career and active hobbies. I've been struggling to understand what is wrong with me over the last 13 years, taken a long time but been diagnosed with CFS, Fibromyalgia and IBS. It is indeed useful to hear others tell their stories and appreciate you sharing with us. It is like becoming a child again in your own body and having to relearn your bodies limits all over again.. Horrible. Respect for you being open with all this, and best wishes to you as the days go by. 🙏
Only recently started to piece together the symptoms I’ve had for years. Only recently started to feel the harsh reality of the cfs I’m yet to be diagnosed with. The worst of it has to be when you’re a)starting off, not knowing how to handle it or what to expect b)when your doctor seems to know less than you. C)having to explain things to your friends and family, as you say ‘why are you being so lazy’ ‘why are you still in bed?’ ‘You’ve been in bed long enough’ ‘didn’t you sleep?’ Your video is very honest and I’m so grateful to have someone who not only thinks and feels the same way but can put it into words for even myself to understand. Thank you for all your doing. Hang in there. 💖
Thank you for sharing this Sophie. It's such a comfort to hear someone else describe exactly how I feel most of the time. I think with CFS, depression and anxiety it is a real issue that people can't see 'an issue' so to speak. I've had similar situations with IBS, achy bones etc its interesting to hear your friends can tell when your getting tired, luckily I have a handful of amazing friends that understand but they say exactly the same. I'm currently having to be off work due to my health so hoping it improves soon but nice to know I'm not alone so thank you. Lily xx
Hi Lily, Sorry its taken me so long to reply on here. As you probably understand how certains things tend to slide. Its so nice to hear from people that understand where I'm coming from. I hope you have had a nice xmas and that things are on the up. Wishing you improved help for 2015 x
Thank you Sophie, and you xx
Thank you for so eloquently describing the experience of CFS. I know the feelings you describe. It's heartbreaking. I lost my career at it's peak.I know how you feel. Thank you.
Oh Im so sorry to hear that. How are you doing right now? xx
Hi Sophie,
Thanks for posting such an honest video about this. I haven't been diagnosed with anything, but it seems like I have ME. I'm 28, and for the last 8 years, every day has been a struggle. I have seen countless specialists; rheumatologist, neurologist, pulmonologist, physiatrist, etc. I've had countless tests, and they all show nothing. Per my primary care physician, they are all 'perfectly normal'. I feel anything but normal. I wake up every day feeling like I was hit by a train. There is no word that conveys how truly, devastatingly tired I am. Every. Single. Day. There is no break from the madness, its like I'm living in the Twilight Zone. My eyes throb like they have splitting headaches of their own, all day, everyday. I wear sunglasses at my desk at work and it helps alleviate the pain a bit, but they're still super tender and sore all day. I have a headache. It is literally there everyday, it never leaves, it never subsides, it is there every waking moment. I honestly forget what its like not to have a headache. Having a headache is so normal, that I forget to take pain relievers (naproxen sodium) for weeks at a time because I've forgotten that having a headache all the time isn't normal. I barely drink anymore because even beer will intensify the headaches and eye pain, and fatigue. The inability to enjoy even a beer is just another on a long list of tragedies of this brutal, life robbing condition. My 20's are all but gone and I have so little to show for it. I have become alienated from friends and family. I am constantly missing or declining invitations to events and gatherings. I am always angry, irritated and just so completely over whatever is going on around me. The worst part is, it seems like even if people believe me, they'll never know the deep, debilitating, agonizing, physical, mental and emotional pain I live with day in and day out. Its like the day never ends. It's like Groundhog Day from hell. I go to bed, wake up, and I'm just as tired, if not more so, than the night before. I have stabbing chest pains, like a knife is been jammed into my chest, I can't take a full deep breath and I have a dry hoarse cough that I've had for about 7 years now. One day, I started coughing, and 7 years later, It still hasn't improved or gone away. I've had several chest x-rays, a CT scan, two pulmonary function tests, and tried several inhalers. ALL of the tests came back normal and the inhalers did nothing. I can also run 3-4 miles without stopping at a decent pace, so I really don't understand the cough. I have nothing resembling any kind of COPD, the cough is dry and never produces anything, mucous, sputum, blood, nothing, ever. I constantly feel bloated. Its like I have to go without food for a couple days to finally feel deflated. That's all I have energy for for now, it has been yet another long day, of a long week, of a seemingly never ending series of long days and weeks, with no end in sight. Thank you, Sophie. It's nice knowing I'm not alone.
Griff Jenkins is it possible it could be caused by mold in your home ?
Thank you so much Sophie! You are the first person i have discovered to be having a very similar experience of CFS as myself. I relate to your experience SO much. You are one brave lady to share your feelings & helping to spread understanding of this debriliting illness. P.S I wanted to word this so much better but having a REALLY bad day myself today! :( Would love to chat to you more X
I don't normally leave youtube comments but this time I am
I would like to say thank you Sophie Eggleton for posting this video As I too have been told I have M.E. having feeling like crap for years and A years worth of test
I'm saying thanks cuz I showed this video to my family as you explain all off my symptoms and that made them understandwhat I'm going through and it's nice too know we are not alone.
Massive thanks
Gary :)
So pleased that this video helped in some way Gary. I hope they understand and support you through the illness now. Sending lots of love to you x
I just shared your video with my family as well. I think hearing it from other people makes it easier to hear. So thank you. I've had ME/cfs for 32 years now (since I was 17) I really don't like to focus on it and prefer to just keep dreaming and moving forward. Life has been very difficult emotionally let alone emotionally and mentally. The isolation has been terrible and become a way of life. I really wanted to travel the world. For the longest time the most difficult part of this disease has been people. I think what you are doing is great. Keep up with the vlogs. :)
I'm currently 17 and started dealing with chronic fatigue ME in January 2016 in my first year of college and it's awful, I've started doing weekly vlogs to show what it's like. Your blogs and videos have really helped me not feel alone in it all so thank you
Thank you for sharing your life and helping others understand ME/CFS.
This has made such difference in my life, this has set me free
Another thing I am in absolute worship to you for putting into words is you explaining about ‘still having the drive’ to be ambitious and be all you aim to be ‘but your body just won’t allow it’ I’m also very stubborn so I’m having to learn to accept the help, If not ask for it.
Sounds like we are very similar. It seems so cruel that people that want so much from life and their career seem to be struck down with this. There's so much we want to do, but our body prevents us or at least makes it a lot more difficult x
I caught meningitis b last year 2021. Didn't think I was going to make it. CFS is the hard part of these infection. In the USA the doctors don't want to deal with you it's your problem deal with it. I lost my job of 2 years, friends, and going through depression tough. Thank you 💕 God Bless you 🙏 for sharing.
No one wants to deal with you but if you try to end your life then everyone loses their shit.
Hi Sophie I was diagnosed with CFS/ME back in 2009. I could relate to everything you were talking about (which was amazing to me), except for the passing out. I haven’t dealt with that but the fatigue is terrible! I can even sleep 8-9 hrs a night but will still wake up feeling exhausted! I know this sounds crazy but I actually feel better the next day when I’ve only had 5 hrs sleep. If I sleep too many hours, I’m really exhausted the next day. I do have the brain fog u were talking about. If I overdo it one day, I will pay for it for 2days! Looking forward to more of your videos! Just wanted to say hello & let you know I completely understand how frustrating it is. Oh, and I have the undereye bags too!! Lol Thanks for sharing your story!!
Bless you. I’m in the same boat. My ME flared up after I graduated from my masters. I was 30 and now I’m nearly 48. Hardest bit is accepting it. I now use a little scooter and do what I can when I can and I sleep in between. People don’t really understand it. Hope there will be a cure one day soon. I adopted a little girl. I had help off parents and managed - so long as I can sleep when needed. It was hard to begin with but I somehow managed. She is the best thing to happen to me. I put finding love on the back burner. It would be nice to meet someone nice one day who is understanding to the condition. Can’t see it though. You look great by the way. I know that you feel terrible. I always do too. I have recently been trying to make more of an effort in my presentation. It’s hard. Morphine doesn’t help. I think it’s blocking my iron intake and it’s hard to lose weight. The muscle and joint pain is constant I know. My lower back pain is also very bad. IBS is another problem on top of it all. I hope you get better. Some people do. I cant see mine leaving somehow. Take care xx
Thank you so much for sharing this, I strongly relate to your video. I've been struggling with horrible, debilitating fatigue for 10 years or so, always being dismissed by GP's, so I stopped looking for answers, blamed myself for being lazy, etc. Its gotten to the point that I seriously struggle to parent, I'll be slugged out (slumped on the floor feeling like a giant slug) while my toddler is using me as a trampoline. I hope my latest doctor is taking me more seriously, took a lot to bring it up.
And sorry for the brain fog ramblings
Thanks for filming this! I've been struggling so much recently and I haven't fully been given any diagnosis yet and I'm already struggling. I have a loving boyfriend atm but he really really doesn't understand and just gets annoyed at me when I just need to stay in bed. I've just had to give up my running which was my only outlet when I felt stressed, angry, sad or lonely and helped but now I just feel on my own with it all.. thanks again for making this video 😘
THANK YOU for doing this video!!! I have been suffering with this for a LONG time!!! I suffer greatly with Mental illness and when I went to Dr's they never believed me about my symptoms. I have not been medically diagnosed but everything that you and others have spoken of....I can relate too!! Mental Health called it " Burn Outs" which is very much associated with Mental illness but as I'm researching it...Chronic Fatigue sounds more like the terminology. I can't work any more and it has been sooo difficult! I tend to isolate as many people don't understand the illness or don't care too! Thank you for being honest and sharing your story 💖💖💖. I too would like to find some answers of what I can do to help me with recovery. Thanks again 💖💖
Hi Trudy, just wanted to send love and hoping that things have improved or that you at least are being supported. xx
It feels like you're living in a blur
it really does x
Jared Messinese yes.
:(
A blur ? Well for me it feel like I’m a lifeless zombie!!! Fucking awful
So true!
Thank you Sophie for your very honest video on CFS. I am hoping that you are better now. For me Mindfulness Meditation has helped enormously with pain and clearer thoughts etc. With low energy it is about sensible sleep patterns, rests throughout the day (Mindful Meditation) and pacing all activity. Day time sleep is not great as it effects the night time deep sleep cycle. There is a lot to deal with CFS as it is very complex and by nature we push our selves which without support we never seem to learn is the worst thing to do! keeping calm and positive also stops the adrenals doing over time (Fight and Flight) and helps us Rest and Digest. All the very best :)
Awe I ❤️ you so much! You seem like a really genuinely great person. Hang in there and Thankyou for this video.
Sophie thank you for posting this!!
I was diagnosed with EBV back in 2016 and my fatigue has been ongoing since. Recently my doctor diagnosed me with CFS due to the fact that my fatigue has gotten worse to the point where I’ve been dizzy with fainting spells. I have all the symptoms you mentioned. I suffer from muscle stiffness around my shoulders and I’m generally achy. A feeling of overall malaise almost daily.
I had to opt out of going to school physically and currently only attending online classes. I’m still trying to figure out ways to manage the fatigue which has been quite debilitating.
For muscle stiffness and achy joints I have found that using a heating pad works to alleviate the symptoms temporarily along with warm baths.
Health and peace
Hi Sophie - I had CFS from 1988 to 1998 or so. I still have ebbs and flows In Energy but I have a nice life. I sincerely hope you felt better soon. I found that almost no one close to me understood or even researched the disease. I was lonely and heartbroken but I can honestly say life is so much better. I wish the same for you. It’s a cruel syndrome. I know….
I was diagnosed last summer and I have struggled to find support. I hate explaining what I have and how I suffer - watching this was like listening to my thoughts inside my own head!! Great job.
+whatJloves I'm sorry that you relate to all this, as I'd much rather you were healthy and full of beans. But if its any comfort I've found the CFS/ME/FIBRO communirty to be very supportive online. There's lot of twitterers etc who are there if you ever need someone xxx
I've had ongoing symptoms for about a year now. This video was very relatable, especially when it comes too the social part. When I make it out of bed and choose to go out with friends I struggle to have general conversations with friends and family without stumbling on my words or losing focus. I used to be a social and active person, now I find myself staying in most weekends sad and alone. That along with the constant headaches, dizziness and fatigue makes it very difficult to complete general daily tasks. I've made positive strides to improve my overall health and try to over come this, trying to clean up my diet and stick to a light exercise routine when I have enough energy. Although it's hard to stay optimistic when a lot of people talk about having CFS for multiple years, its disheartening not knowing how long I will have to live with this for
update? mines gotten worse i don't go out anymore.
@@beepboop9519 I'm sorry to hear that! I know how hard it is. I'm getting slightly better, still a long road ahead. Able to to do 15 mins of yoga a day now without crash, and can hang out with friends for an hour or so every once and a while. Been doing the ANS rewire course which had helped a bit, as well as a very healthy diet, meditation and a range of supplements
you're a brave lady sophie! i hope your ME improved
Hey Sophie,
I only just saw your vlog. It was a while ago so I don't know if you'll get this msg. First of all, thanks for the vid - I've had CFS for 6 years and I understand every single thing you've said (Motorhead is one of my favourite bands btw - so I hear you on that one! lol). In particular, I understand the frustration of wanted to make physical progress and not being able to. As well as a teacher, I'm a personal trainer and have always kept in shape, but with CFS it's so much harder (and often impossible), as you know. It drives me wild as I know it's not a lack of drive or discipline, but the tank is so empty you can't do anything at times. So I hear you 100%!
I don't know if you've made any progress with your CFS, but I started a CFS online recovery program run by a fellow Aussie (I'm an Aussie) named Toby Morrison. He had CFS and has fully recovered, and now helps other CFS sufferers to do the same. I started his program a year ago and was actually starting to feel better than I had in years, but some major personal setbacks towards the end of the year put me back to square one. I'm getting back onto the program now as I remember the progress I was making. If you haven't found anything to help you yet, please consider having a look at Toby's program. Here are some links:
www.cfshealth.com/online-recovery-program/
www.cfshealth.com/chronic-fatigue-syndrome-fitness-fanatic/
th-cam.com/video/XAYfQ45iMjM/w-d-xo.html
th-cam.com/video/dpSA_d7S8JQ/w-d-xo.html
Anyway, I won't chew your ear off any longer. I hope what I've mentioned helps you, and if you have any questions, want to learn more about Toby's online program, how I've been coping with CFS, I'll be happy to get in contact via email or fb or skype :)
Take care,
Mark
Everyone makes me feel like it's all in my head. It's so relieving knowing this is real. They really need to do more research to get rid of this suffering. I've had it it for 8 years now. I've been bed bound off and on more than I can remember! Lots of love. Hope we can all get cured!!!
+Jasmin Hahn Oh I;m sorry you have had to deal with such a severe case. I agree they just don't know enough and make us feel like it's all in our heads. At least theres lots of us out there that understandxx Sending love
You're not alone, I have CFS as well. I believe that you can get through this! Keep fighting!
Keep fighting too. Lots of love xx
This video sums it up really well, there's a lot of misleading ones online but this is an honest representation of what it's like. I've had glandular fever and tonsillitis multiple times, making this more relatable for me personally, and making this video even more genuine for me. Thank you for making me not feel as alone with this!
Thank you. I thought it was also important to show different severity's of the illness as whatever level you have it truly has a big impact on your life, albeit it in different ways. x
I feel that I recovered fully from the glandular fever though, and occasionally I find that I have great bursts of energy since. Sometimes I find the energy to cycle to Land's End on a bike you'd struggle fobbing off to somebody for a tenner (despite racing and getting beat by a jogger towards the end of the line), or to travel the world or a country, but lately it's been real bad. Sleeping and not moving for days on end, and using all my energy in bursts when I have to get out of the house and do something I've committed to
I recently passed a tree surgery course and wondered if I'd got Lyme disease, but I quickly dismissed it because I never felt the sensation of being bitten, or had any distinct marks of having been bitten. I eat very well. I tried packing on half a stone for more energy reserves, but that hasn't worked either and now I'm lugging an extra 7 kilograms about when I'm tossing and turning on the settee
Maybe you'll find something useful in the link below which will help you in keeping your body in a state of recovery. Ray's speciality is hormones, and eating in order to keep your body out of a state of stress by reducing endotoxin in the gut and also reducing stress hormones, such as cortisol and oestrogen. He even recommends things like an ice cream and a can of coke! The man is a classic. Not many people have heard of him but I think he's way ahead of his time, he's the best looking man I've ever seen over 80 who wouldn't look out of place in a Just For Men advert so he must be doing something right. Here you go:
gregorytaper.com/2014/09/05/the-compiled-work-of-ray-peat-phd/
We'll get there! Keep us all posted with any improvements you have! I look healthier than I have done in the past but I certainly don't feel it lately x
Thank you
Thank you for putting into words everything that i am going through.
I can send this link to friends, so they can understand , but most importantly my partner
Hope you start to feel better soon
Thanks for this wonderful video. I was diagnosed with CFS, Fibro, ICB, and chronic pain. I had cancer 20 years ago which wasn't treated well, and diagnosed late. I have sleep apnea. The only thing that helped over the years, was a city warm pool-- temp. was about 92, and we were a family. It helped the depression and the pain. The city tore it down, 4 years ago, and some people died ( non CFD), but I didn't know how much my own health would suffer.
+Lori rhea Hi Lori. Goodness me it sounds like you've had it rough. You are an absolute trooper by the sounds of it. How awful that they tore down the pool, which was doing so much good. I hope you can find an alternative soon that will help xx
hi i have had cfs for 20 years today is the first time i looked on youtube to hear from other people with cfs i can realate 100% to what u r going through it sucks it helped just to hear some one elses symptoms are the same as mine im not real good at wording things all i can say is good video and hope u get well soon
thank you for sharing. it helps me to see that I am not the only one who has the same struggles and questions.
Thank you for doing this! I've been suffering from Gastroparesis for 4 years now but the past year have also been dealing with what can only be described as chronic fatigue syndrome with EXACTLY the same symptoms you discussed. The way you talk about it...it felt like you had been living my issues for me. I would love to chat more with you and I DO have some tips and tricks i've noticed that have helped :)
clyp.it/tofpusyi great GP results on this product
i have gastroperis too as well as CFS what helps you?
Thank you for your honest. Totally relate to everything you've said. Have just looked for you on twitter. thanks cath
I got glandular fever in August of this year and I can't shake it off. I'm convinced it has turned into CFS. Most days I end up in bed unable to move or speak from sheer exhaustion. I don't socialise anymore because I can't stay awake long enough! I plan to go back to the doctors in the new year but I'm worried I won't be taken seriously. It's comforting to know someone else is in a similar position and that I'm not going mad, although I obviously wish neither of us had this! Sending love! Victoria X
+lilyloveslola Hi Victoria, so sorry you've been poorly. Glandular Fever is awful. It's still early days so don't give up hope that you'll make a full recovery. It's a horrible virus so your body may just need a little time to bounce back from it. If it does last though do be prepared to have to keep going back to doctors. It's still largely a mystery illness to many gps, and they don't always know the best moves or steps to reccommend. Perservere though, try different drs if you feel you don't have a sympathetic ear. Don't push yourself too hard either, your body is trying to tell you something. On those tired days, do try and do some stretches or go for a walk though - even if its short. xx sending lots of love xx
I lived with CFS for 5 years before fully recovering. I experienced the exact same issues you have dealt with. Hang in there and keep looking for solutions!
+FitMenOver40TV Thank you. I will defo hang in there. How did you recover? Any tips? xx
Sophie Eggleton You need to uncover the root cause (hormonal, pathogens, heavy metals toxicity, low neurotransmitters etc.). For me it was damage to my hypothalamus due to a concussion that caused a hormonal imbalance. I am now on HRT and feeling 100%!
***** That's sucks, I've been there myself.
+FitMenOver40TV Please make a video on HRT, your experience of it with ME etc. I'm a 28yr old male and had ME/CFS for 8 years, it's been hell. I often think if taking testosterone would be helpful then saw your comment.
+FitMenOver40TV interesting, how did they find the root cause? MRI? Wouldn't they find the root cause if you been through all test initially or after your concussion?
Thank you for your open and honest blog! I was diagnosed in 2014 at the age of 44. In the United States we call Me Fibromyalgia. It is still very misunderstood and hard to treat. I'm a breast cancer survivor and believe it or not, nothing compares to Fibromyalgia and Chronic Fatigue. It is a daily struggle that at times is almost too much to bare. It's the fatigue that is the worst. It's as if someone literally shoots you with a dart gun and you have to continue to function regardless! Just this morning, I broke out in a cold sweat in the kitchen and almost fainted! It's crazy I know, but the truth non the less! Sugar is my biggest enemy! I read the book, What your Doctor doesn't tell you about Fibromyalgia by, Dr. St Amand. His program is called the guaifenesin protocol. I feel better but it's not a cure all. It has helped some and for some it has not! Everyone is different I guess. Thank you for sharing awareness to this terrible illness that is so misunderstood!
Sophie,
Thank you for putting this vlog out there, I have a daughter who has just been advised that she may have CFS and certainly everything that you describe and the information out there on CFS seems to fit.
She is 12 years old and has been poorly for over 6 months and the more I learn about the condition the more I'm convinced the signs were there before although not severely enough to really impact on her activity levels.
She in the last couple of years has been off doing long hikes in the countryside, up and down mountains in the Brecons and cycle rides up to about 12 miles with me, so it has been difficult for her not being able to carry on with that and having missed a substantial amount of school in recent months.
Many of the things you say I can see in her and are consistent with some of the things she has said over the last 12 months.
We finally got to see a pediatrician who feels her chances of recovering to her previous health levels are good, so we left feeling quite positive about her future.
While I feel that way about her prospects and the more I learn about the condition, the more I feel for those like you and others who suffer to a much greater degree for the debilitating consequences that you and they have to live with.
I felt your vlog was well balanced and informative, certainly not negative, I'm sure it will have helped many others, so thanks again for posting it on youtube.
I wish the best for you and all the others who suffer from CFS/ME.
Steve Bridger
omg I'm the same as your daughter I've been ill for 10 months
Hi Kirsty, Sorry to hear that and I hope that your prospects for recovery are positive too.
I've found an app that can be used with a smartphone or tablet as was suggested by the pediatrician, it's the ME/CFS Assistant, you can find it and no doubt many other ones that may prove useful in assisting you with tracking your symptoms and helping you on your journey of recovery.
I also bought my daughter a fitness tracker to work with it which measures her heart rate, activity and sleep levels to help her further. It's early days with that, but I'm hopeful it will help to establish a manageable level of activity without payback, ie the boom and bust, then to help her gradually increase her levels of activity in a slow upwards way, again hopefully avoiding the payback from overdoing it.
Wishing you and all the others unlucky enough to be affected with CFS/ME all the best, Steve
I've had it now for 4.5 years. I was an extremely ambitious person who become very successful for a very short period of time after years of hard work till I got sick. Now I can barely help myself and live alone and don't want to see anyone. People don't know this because my personality is very strong...but its a front I have to put on until I can go home and rest. I did pull myself out of it 2 years ago but then had to deal with something very hard that put me into depression, which ended up causing me to relapse for the 4th time. At my worst, it would take me 5 days to recover from a walk and I'd sleep 2 to 3 times a day...needless to say its insane and I have a very strong will but I really don't care about anything anymore. Thank you for this video.
glad others feel thesame way,its a never ending battle but if I ever find a cure to this torn in the flesh, I will consecrate my life helping others with it.
Amen
Has medication helped any of you?
@@gregorymalchuk272 I personally feel that medications can turn mild cases of CFS in extreme cases. I think the gut bacteria balance has a lot to do with the extremity of the symptoms. CFS is also very sensitive to chemical imbalances in the body. Taking medications in hope of finding something that works is very very dangerous. There are so many symptoms that its hard to nail down whats happening. I developed loads of food sensitivities. I cut out white flour because the bleaching process produces a by-product called alloxan (look it up). Green juicing, new york strips steak, eggs, fried veggies like onions and peppers have really helped with my digestion. I have epstien barr, so lots of vitamin c, iodine, rest and limiting stress has really helped with my symptoms. Still battling :)
@@gregorymalchuk272 the lighting process helped control my fight or flight response...that was huge
Thanks for a very informativ video. I live with this every day, and as you say it takes over your life consider to friends, work, relationship. I was diagnosed in 2010. The sad part is that its hard for family,friend and old colleges. The fatigue is together with the Chronic disease that i got from beeing poisoned from Chemical and microbiologig agens at work. I thank you for making such a good and informativ video. wish you all well
Dear Sophie,
When I was 14 I was diagnosed with lots of conditions including Chronic Fatigue Syndrome and Glandular Fever. I am now 18, the first 6 months (of my Chronic Fatigue) were the worst, however I have still been dealing with it ever since. My immune system has remarkably recovered however the Chronic Fatigue is still there. I am so glad to hear that there are others which understand the drag of Chronic Fatigue on ones life. Friends, family and teachers have never understood and have verbally bashed me for being 'lazy' and hazed resulting in social anxiety. Therefore I did not tell anyone that it was still present, I was also put off because of the amount of doctors which couldn't help me. However about 2-3 months ago I started seeing a councilor who I opened up to about Chronic Fatigue still effecting my day-to-day life. She told me to start taking some supplements: Zinc, B-6 and Iron. Since taking these religiously, I feel how I felt before I had Chronic Fatigue, it is amazing. I highly recommend them to anyone that is dealing with Chronic Fatigue and has failed to find a cure. I take Zinc after breakfast or lunch B-6 after lunch or dinner and Iron before bed. Zinc and Iron can clash so make sure you don't have them together, make sure you have B-6 when you have a full stomach otherwise you could get diarrhea, some people get diarrhea from the first day of taking it but that will pass. If you're interested in talking more here's my facebook facebook.com/clansett
All the best!!x
Loved this, Sophie. Really endearing and enlightening video.
Thanks for watching and commenting Zoe. Hopefully it will get more people sharing their stories x
Thanks for sharing! :) I have me/cfs as well and it is validating to hear other's experiences as well!
Hi!
wow .Thankyou! I got diagnosed with CFS a year ago and I've been struggling so much! I didn't get a virus or anything to set it off but I did work flat out for 4 years whilst I had all the symptoms- I just pushed myself too hard. I had to leave my full time job and now have no income at all- thankfully my fiancé is very understanding and supports me.
I understand all of those! I have so much guilt.
You can heal with a change in lifestyle. Change your diet, your sleep pattern, relax, avoid intense stimulation from violent video games and movies, and meditate. Learn more at the TH-cam channel healthrecovery, a fully recovered CFS sufferer.
Thank you. I am newly diagnosed and have a mild form but definitely impacts my life significantly. There are many blogs and stories by people with severe CFS/ SEID and it’s good to see and good to raise awareness. But it is also so helpful to see someone who has struggles similar to mine. How are you doing now?
A friend told me to watch, he has this condition and said you nailed it on the head. Stay positive! 😁
+John Oquist I'm glad he found it relateable...hope he's doing ok too. Send him my love. Hope you're ok too! x
I have this as well as an autoimmune disease and a bunch of other chronic illnesses. No one gets what its like to get hours and hours of sleep and still wake up exhausted and in pain every single day. Thanks for sharing your story! I'm planning to do a CFS/ME video on my channel, which is about living well with chronic illness. Its so hard to explain something that is impossible to understand unless you are living with it...
I don't understand how i can wake up feeling more tired than when i went to bed!
Thank you for making this video. It helps people like myself suffering with this.
+Sobanski87 Sorry you are suffering, but glad to hear it helped! xx
Hi I have been diagnosed with this today! I am a full time working single mum who is in my ideal job and to say I am scared and unsure of my future is an understatement! it's great to see and here other peopled experiences so thank you. u can't work at the moment and i just hope I just hope treatments I use are effective! thank you for sharing and making me feel understood!
+aisleen connolly Hi Aisleen, Sorry to hear that, but there's a lot of us out here, and form my experience everyone is very supportive. If you ever need someone to talk to their out helpful twitters hashtags and users...and various forums and groups. Sometimes it feels like others don't get it, so it helps. Just keep going as best you can, but don't push yourself to hard. XX Sending lots of love
+Sophie Eggleton thanks Sophie it definitely is an eye opener to see the support that is out here! I will definitely be looking at the support groups! thank you and take care too!
hey sophie. i was diagnosed with chronic fatigue syndrome in 2009 when i was 20..but i think i had possibly always had it!! i can really sympathise with what you talk about in these videos. its tiring me out even typing out this message at the moment, and ive been laying in bed all day! i manage to work full time but its a struggle. i too was diagnosed after having glandular fever for the 2nd time! my friends and loved ones constantly take the piss out of me for always falling asleep so easily! i also have mild autism and over the years have struggled with OCD and post traumatic stress also so having the emotional symptoms really add to the physical and emotional exhaustion of CFS. i have IBS and lots of allergies and intolernaces as well. im very very lucky to be surrounded by very understanding and loving family and friends and an amazing fiancee even if sometimes they lovingly poke fun at me, and my almost 4 year relationship has been really really trying at times and there have been times i thought we wouldnt last. my dream in life was always to be a dancer and as you can probably imagine ive not been able to achieve this because of the nature of my combination of conditions!! however i have decided that i want to try and do as much as i can towards it, as like you i am lucky enough to not be completely bed bound by this condition! i work in childcare and am currently looking for sometihng less demanding and physically exhausting so that i can focus on getting back into dance as much as i can as it was what i have always really wanted to do. i wanted to say a massive thank you to you for these videos because it has encouraged me that i am making the right decision to not give up and write my life off because of this condition. i tihnk you are very inspirational and its amazing the amount that you still manage to do, because i truly do understand how hard every day with chronic fatigue syndrome is! and i know how people can show a lack of understanding and make you feel like youre going crazy too! as for any tips i have, you rightly pointed out in one of your later videos about staying positive really does help to boost your energy and napping less even though it seems like that would be the sensible thing to do this apparently is worse for you, and its more about doing relaxing activities like yoga and meditating or getting a massage than sleeping too much. and avoid very processed foods as well as sugar, alcohol, caffiene and sweetners, which i struggle with because i love a coffee and when im really tired thats all i want! but i find things like that really make aches and pains worse and ibs as well. anyway thank you for these posts and for being such an inspiration to people who struggle with CFS xxxx
glad I can relate to you,I'm.just 20 but CFS is just robbing me of my life.
Thanks for sharing. We need to spread the word to get research funding and respect. Much healing.
You have made me realise, all these symptoms I have been experiencing have a name, I’m not lazy, it’s not just ibs, it’s not just anxiety, it’s not depression, you have verified what I have been feeling for a long time.
See an infectious disease doctor. Ask for a western blot to see if you were exposed to lyme disease or other coinfections. Ask for results. You want to see specific IgG bands not necessarily cdc or idsa positive tests (their criteria are disgracefully unreliable.) Knowing whether or not you have been exposed to lyme that went untreated and disseminated may give you answers that can help you. (Screw you Dr. WORMSER)
I’ve been feeling like you for a long time now. I’ve been pushing myself to do my work (which doesn’t help me) and the environment it is doesn’t help either. I’ve been under a lot of personal/family stress for a couple of years now (again doesn’t help).
Growing up I was always the one that got ill as I’m an asthmatic however I was born healthy and I’m the only one in my family with it. I usually get really ill with upper respiratory issues at least twice a year and it sticks for weeks and takes months to feel better. My old doctor just buffed me off and I still struggle to get them to take my symptoms seriously. So I’m currently pushing my surgery to test or monitor me to get to the bottom of exactly what’s wrong with me.
A couple of my friends who have M.E. have been really concerned about me but also extremely supportive and understanding...don’t know what I would do without them and my understanding bf. They’ve also suggested I might have a thyroid problem too. It’s just annoying I have to push so hard to get my doctors to take me seriously.
I'm 13 and I have had chronic fatigue for 1 and a it years now and this has helped me a lot thank you so much :)
Orla Blogs Hi Orla, so sorry to hear of your diagnosis. There is a lot of us out there, so you aren't alone. Always make sure you reach out to someone if you are struggling x
Orla Blogs You are so young, there is a very good chance that you will recover.
Orla Blogs You are so young, there is a very good chance that you will recover.
my girlfriends mum had this for years and she was never correctly diagnosed and one day I was in Court working when I got a page from my clerk to phone my girlfriend, which I did and was told between frantic sobs that her mum had gone missing. She had found her way to a hotel and had tried to comit suicide. ... I know now how deeply frustrated she had become because at that time the illness was unknown and so out of desperation she had tried to take her life. She has a loving family but it was the deep frustration she must have felt ... I am so glad that this is a syndrome that is better recognised now. It's sad someone so young and beautiful afflicted but ther many resources available to help better understand this illness ... but it still surprises me given how many people suffer that medicine is still unable to definitively diagnose and help. I wish I had known about this ten years ago so I could have been more supportive. .. it's a regret.
I know this was a while ago but I'm happy I found it. You've described me and my life to a T. People think you're being lazy which really bothers me Everything you said I've either done or felt. It's a miserable disease.
I have Rheumatoid Arthritis/ Lupus. It gives me chronic fatigue. Everything (except blackouts) you said I feel . Thank you for this video!
Finally met somebody else that knows what I'm going through although I don't get the headaches of the dizziness I definitely get the brain fog and pain.
I'm so sorry that you have chronicle pain .. i have it now for 4 years and indeed bed bound probably for forever if I can believe the doctors . and it's hard but in happy I have my family who is keeping me in check so I don't wanna check out if u know what I mean .. ehh i Just wanna say thank you for making this video even if I'm 2 years late I thought I was the only one sometimes but now I see someone who has it too and I don't read about it
I've had it for 27 years after Glandular Fever, I go from bed to sofa and walk my Chihuahus occasionally see friends for 2 hours and guess what - apart from 2 people, everyone thinks I'm well because I look well so I know people will look at you (you look like the perfect picture of health) and I totally understand everything you say.
Hi Sophie! Thanks for sharing!
Hi i have had it badly for many years, brought on by glandular fever which i have had more than once. really important not to overdo it. stop and rest if you feel faint. himalayan salt lamp helps with sleep. stay well hydrated we get dehydrated faster than healthy people. regular small meals every few hours. i hope this helps.
I have it along with fibromyalgia and a couple other pain disorders. But CFS is the worst. I had a degree and had become a professional; gave back to my community; was active in a local church and then all of a something: nothing. It’s tiring to roll over in the bed from one side to the next. I’ve spent so much time to get fibro symptoms lined out that I hadn’t paid much attention to black outs, Brain fogs, weakness in limbs, or tiredness. I’m going to begin my journey now. Thanks for the video.
Oh yeah and the worst part-people thinking you’re lazy and having to cancel plans all the time. I get anxiety thinking I have to be some place sometimes.
Sorry to hear that you are going through such a tough time, I can relate to most of what you are saying. I was diagnosed yesterday with CFS but I think that I've probably suffered with it most of my life, I'm 51. I've had flare up the last few months and I'm worried about not being able to work and make ends meet??? 🤔
losing my career was the worst, most soul crushing part. i try to remind myself that you never know what will happen next, but yeah, i think the career is what hurt the most
Thank you so much for sharing!
Thank you so much for this video Sophie! greetings from Hollamd
Femke Krone Greeting from the UK - hope you're doing ok! x