Living with Chronic Fatigue Syndrome (ME/CFS)

Living with Chronic Fatigue Syndrome (ME/CFS)

Hi today’s video coming from the floor of my bedroom. I have a medical condition – CFS – which Is called Chronic Fatigue Syndrome. It doesn’t sound so bad, I know, being tired all the time, but it’s being it’s being tired, and sleep doesn’t- it doesn’t make it better. And when you’re tired, you get this brain fog and you can’t remember things. I wanted to make the video when I have the brain fog to show you, to explain. So I try. I try. If it’s slow. So CFS or (S?) ME They’re the same… same thing. Some people think that they’re different, but no one really knows what either of them are, so how can they be different if they’re the same? So what is it? So your muscles are in pain, and Your brain and your spinal cord- they get inflamed. So it’s like a pressure in your head, and it makes you thinking really, really slow. And you can’t process things. You can’t, um… If someone throws a ball at you, It’s going to hit you. You can see (mumbles) where you’re looking at them. You don’t know that they threw the ball til After it’s hit you. It’s like being drunk. Like really, really drunk. Tired And your muscles hurt, like hurt really badly. And you are tired all the time, but it is episodic so Sometimes I am a bit better. I could work. I could have a little walk maybe with my dog, and I can go to a party or (mumbles) I think I may have made these into cows. Now they’re kissing cows. Because I went to the party, because I was working really hard, focused. Then the next, day it’s been bad, or Maybe two or three days, and sleeping doesn’t make it better. I am so much better (than) when I first had CFs. I was 17. I was already in hospital because I was ill with my my normal disability which is a really, like, weird thing, no? Having a normal disability? And then, like, an extra one. And then she’s deaf, too. So, i’m determined. So I was seventeen, and I had a (???), and it went wrong, and all my spinal shit If you have a (???) and it goes wrong, and it stays in your body, it’s just like it’s in your body, but the fluid is just gone from your brain. The doctors think that is what gave me this thing, but nobody knows. One year and a half, I was in bed, and I couldn’t open my eyes because it hurt so much. I couldn’t have any sound near me- no sound. At all. Which, I know, I know I’m deaf. This is quite comic. Even- even a touch, a gentle touch- that was too much. That hurt. Oof. You could touch my bed, and it hurt me so much I would want to scream, but I couldn’t scream because the screaming hurt more. And I couldn’t lift my head because whenever I lifted my head, all of the fluid would go down, and then there wasn’t fluid in my brain. And then I would vomit everywhere. And just the pain all over my head It was so bad. And I know just pass out. and it was really slow recovering from that. It was lonely. Everything hurts and you are still awake. But your mind is so slow, and sometimes I would come back a bit, but I’m still trapped, and this body, it hurts. And I was kind of aware of what was going on. I didn’t speak. cause cause it hurt. And my My family had to carry me everywhere because I didn’t stand up. I couldn’t walk. So in the car, I had to lie in the back with my brother. He’s such a sweet boy. I would put my head on his lap and lie down And we would drive. Then they’d have to carry me flat. When I got ill, I was in the middle of my my exams. Bad, bad. Don’t get ill when you’ve got exams. And so I couldn’t go to my classes because I couldn’t sit up, and I couldn’t read, and I couldn’t listen. And I took all of my exams. I took them all in a room in the dark. Lie down. And there was this really, really nice lady who wrote down everything that I said and I led her with my eyes closed, and I just walked I just dictated all my exams. And I hadn’t been to school for for a year. I was in the middle of my A-Levels. I took all of those exams, and I passed, and I got A’S and B’S, and I wasn’t as happy as I should have, cause I wanted better, but That’s just… that’s a bit crazy. And that was hard, and getting to university took me four years. Today, sitting on the floor is amazing. That’s so good. So now, I’m a bit weak. I can’t walk the long distance. Sometimes I get this thing that we call “ragdoll” in the evenings. It’s like it being your body is asleep. You’re trapped in there. There’s this thick, thick wall , and you’re trying to break out. And Tridia(?) can see. So my eyes kind of go like (gestures), and she has to help me get up, up the stairs. And undressing is hard. It’s like a drunk person. They’re(?) never mean. I have to be careful because I don’t want that to happen. I need to not do a lot of things. I need to be careful and do one thing, end the day, and then I need to rest. My friends- the all understand. I’m sorry that I can’t go to all of the parties, and I’m sorry that I sometimes have to go home really early, and I am sorry Walter that I can’t take you for longer walks. And I’m sorry when sometimes I get messages I just, I can’t… I can’t reply In my life with Chronic Fatigue Syndrome, that’s what it’s like for me. I hope I helped to explain a little bit.

100 comments / Add your comment below

  1. I am n awe of you. You are a beautiful human being and are inspirational and help me appreciate my life without disability.

  2. I love this ? I was diagnosed with m.e when I was 10 years old, I am now 20 years old and am still struggling but am much better than I was. I really appreciate all your videos and the awareness you're spreading. Everything you do is wonderful

  3. Why are you making a video at this stage right now honey? 🙁 Oh sweet heart please don't hurt yourself, take some rest. Love you. Stay blessed.

  4. I have cfs and I could tell from the moment you said ‘hi’ what state you were in and I couldn’t figure out why you were choosing to do the video when you were ‘not at your best’ (which is how I think of it for myself) but as you went on it made perfect sense.

    I usually try and avoid people (except for my close family) when I get like that partly because my pre-cfs self was quick witted and processed things really quickly and it hurts my ego to not be like that anymore. I still struggle with accepting the ‘new me’ and I need reminders that I don’t have less value because of it even though it changes how I interact with people and what I can do in the world. Just explaining the idea of cfs is so hard (especially with it’s ridiculous name – I don’t get ‘tired’ really quickly, I never had the energy in the first place. I have to be restrictive with the little amount of energy I do have and if I push it this is what happens… and I very quickly reach the level of overdoing it. And sleeping at night does not recharge you – you are at the same diminished level of energy the next day. It compounds. It’s like living your life as a smart phone with a low battery and a charger that doesn’t work properly.)

    Thanks for being brave in your vulnerability and letting people see this.

  5. you can tell in this video, after watching the others, that you are tired…. and so incredibly so. I am sorry you have to suffer through this sometimes, and I 'm so glad you are trying to educate us about it. I love your personality, and they face that you are so stron about it!

  6. It’s so helpful that you explained brain fog whilst having brain fog. I’ve had brain fog unrelated to CFS (I had epilepsy and sometimes it happens with more “severe” seizures or when I had a bunch in a row) and it’s so hard to get people to understand that it’s real and I’m not faking it

  7. Honestly, when you listed out apologies, I started crying. I've done so much apologizing and wanted to do so much more because of things I've had to miss out on. While I don't have CFS, my own struggles have cost me friendships and made me unable to do things I wish I could. It's not a good feeling.
    But, I want to thank you for putting this out there. For so many people who are able-bodied and neurotypical, these types of things are unimaginable. So, for you to represent us in such an accessible way, I think it really helps the dialogue.

  8. I have chronic fatigue syndrome and I completely relate to this. Trying to go through a full day college week is horrendous

  9. wow. i used to be a personal assistant to someone with ME. and i would often see her like this .. uhm.. i don't know how to explain.. i always felt for her, and did my best to be of help to her, but of course she never explained it, she couldn't. and i read about ME on the net and it was all there but somehow it didn't compute for me when just written. but now, with this video and your explanation i finally feel like i get it. not that it's important to the world that i get it, but it is important to me.

  10. I’m dealing with a particularly bad flare of my Syncope right now, which is a lot of brain fog and dizziness and feeling faint. Your videos are about the only thing i can focus on currently. Thank you.

  11. I've had chronic fatigue for about 4 years now and it was interesting seeing someone elses experience with it, because I never had before. Yours is a lot more severe than mine but does have lots similarities. The metaphor that I use for decribing my brain fog, is as if I'm trying to see though the mesh that tennis nets are made of. I can see through it and get the general image on the otherside, but I could only process and respond to things that were small enough to get through the holes.

  12. thank you for being who you are , i feel like i care so much about you even though we dont know each other (maybe because you look so much like my bf and you both are amazing persons !!)
    lots of love from italy 🙂

  13. Thank you so much for posting this… Cfs is horrible i have it too with other medical conditions. Sometimes i cant even get out of bed for days… Sounds and touch are horrible…yea this is sucks

  14. My back injury was triggered today when I had to pay my respects to a very short person. So I am on a straight up Jessica binge right now because you inspire me.

  15. I found your channel a couple days ago and enjoyed your personality and learning more about deafness. I also was happy to find a YouTuber I love that is in a lesbian relationship. But now that I found out you have CFS it's like I was meant to find this channel. I also have CFS and I never see anything about it and don't really know of people who have it. I'm so looking forward to exploring your channel more.

  16. The past few years have gone by with little to say for them. Tutors helped me get my GCSEs but I never made it to A-levels and now my peers are in their second year at university I am feeling pretty left behind. Not just in comparison to them because I care about that fairly little these days, but I'm terms of my own life and with what I want to fill it. Hearing you talk about spending a year and a half in bed (I've spent the past six months house bound and mostly bed bound with no signs of getting better any time soon… If anything, worse). I don't know how my life is ever going to change so you talking about taking four years to get to uni and things getting better really means a lot

  17. I have this as well. I'm 23 years old and this has completely robbed me of having a normal life.

    I have had every test imaginable and everything comes back fine except for my brain MRI, that shows an arachnoid cyst (which the doctors say causes no symptoms).

    I wish you all the best.

  18. Our hero’s come in beautiful packages! (So u don’t look sick) ladies we are all invisible disease warriors! ??????

  19. Hi Jessica, greetings from Puerto Rico. Thank you so much for filming this. I have Hydrocephalus, and deal with fogginess on a daily basis, but have a hard time explaining it. I feel like my head is floating, and my memories and thoughts disappear. Sometimes they come back, and others… well, you get the picture. I'm in nearly constant pain because of my condition, and the temperature here isn't helpful either.

  20. Love the dancing outtro. Thank you for telling your story. I am happy you found a normal life, even with disability. I hope you are enjoying Malaysia.

  21. Your symptoms looks so similar to my illness…Its called Hypo-parathyroidism low calcium disorder. Its a rare auto immune disease and low calcium can cause foggy memory and many other symptoms such as tingling, tetney, twitching, squeezing muscles, fast heart rate, high blood pressure, kidney failure ect….

  22. You are so inspiring. I also have CFS/pots. Plus brain damage from a prior stroke due to carotid artery dissection. Can you believe it was caused by a cross fit class. It happened 6 years ago, I've only had Pots for 16 months . How I wish I could stand in one place for 10 mins . It just goes to show you that time does heal ! Btw I love all your videos??❤??

  23. Hi Jessica, I was happy to come across your channel and information on CFS. My brother has CFS. he hasn't worked for years . He gets esa allowance, which he has to apply for every 18 months and be assessed every time, but its not enough to live off. He still lives at home and couldn't afford to support himself now he's not working and has cfs. I just wondered if there anywhere he can get help for a finding his own place to live ? Also suggestions if there is a career he can do part time and still get financial support ? Its difficult cuz my parents don't really understand it properly and don't see it as its invisible and I think they might see it as being lazy and unmotivated, and depressed, which doesn't help matters. They are from a different generation where you go to work ,set in there ways. I just not sure how to help him move forward with his life.

  24. Oh my god, i know this sounds like a weird thing to say but i relate to so much of this. I was diagnosed with anemia, but the medication theyve given me has nearly run out and I dont feel any better, in fact i feel worse. I am seriously starting to consider that I have this because even when im not anemic, im still always tired. even when i go to sleep at a reasonable time. although the extreme pain i dont relate to

  25. You are so amazing and helping me not Feel along i a living with bad headach since Saturday. Dr. Is worried.

    I also have mystery diagnosis.

    And broke left femur in 2014

  26. I had so many mixed emotions while watching this. First I thought wow it looks like you're just really really high or drunk, and then I thought this is actually quite adorable, the way you were speaking and acting and laughing, and then I thought well that must be horrible to have that regularly happen if you do too much or just episodically.

  27. I have this. I have MS too. My doc, neurological, says it's apart of the MS. I once found my keys in a shoe box in the refrigerator and had no recollection on how they got there.

  28. I have CFS and it's Hell, I want to escape it, and there is only one way out…thank you for sharing your emotional depth

  29. I've only recently found your videos Jessica. And you've touched me so deeply.. listening to you explain disabilities or illnesses really puts things in perspective for others I think.. even though that's not really your intention you and I think your intention is just to educate other people about disabilities and illnesses and to make them aware of how they should always treat everyone equally regardless of any disabilities they have.. and I know you don't want pity and I don't pity you but when I watch the let's say educational videos.. I just want to hug you and I Cry is that what your videos because I feel sorrow for the things that you are going through and the things that you miss out on in life. I wish you all the best..(((hugs)))

  30. You kept appologizing. Don't be sorry for not being able to do things or go to places. You can't help what your body does.

  31. I just found your channel and have been binging on your videos and I want to thank you for this video. I am a registered nurse health coach (I work through phone calls) and a lot of my members suffer from CFS. I have had a difficult time coaching these people because I didn’t understand exactly what they are going through. This video has taught me so much and has given me a real insight into the condition. I feel that now that I have this new knowledge I can coach from a different perspective and hopefully make a more significant impact on their self care. Thank you for helping make me aware so I can be a better coach.

  32. Oh honey! I so understand! I can’t stand chronic fatigue, but brain fog I dislike more. The cause for me is Hashimoto’s. They are symptoms of the Hashimoto’s for me. I’m sorry you go through this. You’re such a beautiful person!

  33. Hi! I just wanted to say thank you for making this video. I just discovered your videos a few days ago and I'm really glad I did. This was not the first video that I watched of yours and I was charmed by the others. So I became a subscriber. Discovering this particular video though, made me emotional, so I had to write, possibly, my first ever YouTube comment to thank you. (I'm incredibly shy and socially awkward so I never say anything online.)

    I was officially diagnosed with ME/CFS and fibromyalgia recently. I've been sick with it for about 1-2 years now. (it's hard to pinpoint when it started because it was misdiagnosed a few times.)

    Seeing this video, made me cry with relief. Knowing that someone knew what I was going through. I always knew that there were people out there who have CFS and have support groups, but I never made the effort to seek them out because I have this fear of talking to strangers. But, after watching this video, it made me realize that finding others who have it and understands the struggles is so much more than my fear.

    I have family and friends who try to understand what I'm going through and help me with it, but they can't fully understand what I feel. Especially for family, it gets frustrating and upsetting when they get annoyed at me for asking for help or make comments such as "Those pains are no big deal, I deal with them too", "Just ignore the pain", or "Why can't you do this, you were just moving before." They do this occasionally and I don't blame them for saying or acting that way. They have never gone through it. They don't know what it's like and how it feels. So, at least talking and getting to know people who do understands it, would make me feel less alone about having it and that I'm not crazy for feeling what I feel.

    Thank you for making the videos that you make. You encourage me a lot. Please continue to do what you do for as long as you can and want to. You have my support.

    (I was typing this with brain fog, so if there is any sentences or words that don't make sense or don't seem right, I apologize for that. I think I reread everything I wrote over 20 times to make sure it was at least understandable. Also, I had to comment that in my personal experience with brain fog, I talk normally, so seeing that you talk a bit slower was very interesting to me.)

  34. Sometimes I have migraines where it’s almost like I’m delirious from the immense amount of pain I’m in and I remember specifically one time where I kept saying that I wanted “not French toast” because my mind had remembered that this one restaurant served French toast hot chocolate but I wanted regular hot chocolate though I couldn’t remember the words hot chocolate. Luckily my friends had seen me in this state before and just kept asking me if I wanted this thing or that, and finally I got my hot chocolate.

  35. That description of when you rag doll really resonated with me. I’ve experienced similar things but putting it into words has always been hard. Thank you for sharing this and helping others like me find the words to explain their bodies. I know how hard finding words can be to begin with with fatigue and bodies doing weird things makes it even harder for me at least

  36. Hi Hun I also have me/cfs I am also a single mum of 2 special need girls aged 9 & 15. I'm having a hard time atm with it all I want is my brain fog to go and have energy. I'm renting and got house inspections due and it's stressing me out.
    Cfs/me is horrible I am also just getting over a chest infection so I'm more tired and in pain then normal thank you for this video…
    And hello also from Sydney Australia ??

  37. I wish so badly I was able to do my exams too 🙁 I developed ME/CFS at 13 and had to leave school at 14, so I hadn't even reached my GCSEs yet, nevermind my A levels. My school were terrible at dealing with it, and stories like yours make me wonder whether had they been better, I might not be stuck here with no qualifications at 16. It makes me so sad because I was predicted straight 8s and 9s (A*/A**) yet all I've been able to do is my english language (which I only got halfway through in the time limit – I used to be top of my year) and foundation maths (again, was top of my year) last week and today, all of those papers being at 9am when my brain works even more slowly than usual. I'll be lucky if I pass either, but I really think I could've done alright if they'd have been more accommodative regarding my illness. I don't know who I'm even ranting to right now, but gosh this has taken me about half an hour to write so no way am I deleting it now!! ?

  38. I have never heard such a understandable description of CFS, but hearing you talk about it I don’t know how to feel, but I recognized a lot of your description, things like I had Thanksgiving and the next day I could hardly function, I hurt, I kept falling asleep randomly, I couldn’t communicate, I couldn’t put thoughts together, and this happens after any time I do anything, I always end up going home before everyone, and I always end up sitting alone and just trying to gather strength to keep going halfway through, and most days I have always said I have enough energy for about 3-5 things a day, so that usually is going to class or work (which work uses much more of my energy then class), eating a meal, taking a shower, cleaning my teeth, and if I can I will get homework done. Everyone, including me, is so frustrated when I say that I can’t do something to help, but I only say I can’t when physically it isn’t an option for me, and it just makes it so hard, especially without any real understanding or diagnosis on anything, and my parents already blatantly ignoring my chronic pain and denying everything from this to just that I have weird allergies. I was in that fog on thanksgiving and I felt so bad that I couldn’t be present and enjoy time with my family, but I just couldn’t enjoy it past the haze of exhaustion from cleaning my bathroom and bedroom and the effort to even just try to be present in conversation.

  39. Hi today is Monday and I was in my office.. I watch this video. I wish that u get better soon God take all ur illness.. u are not alone u got many pray. I think there so many angels around you because think that I know kind person always accompany by angels.. I send my angel to u. not helping full but I trust pure pray will go to you. Is it right ur full name?. So i can call ur named in my pray.. I lose someone that I loves. She's my mom. Docter said she will survive 3 month but she can do it til 4 years. But she's cancer so different. I totally lose all of friends everybody leave me and u are so lucky many people loving you. Be Strong Jessica… ??

  40. I don’t have cfs but I have horrendous insomnia and when I do sleep I just feel as tired as I did when I went to sleep. I’m always tired during the day and even at night but I am completely unable to sleep at any point. I go to bed at around 10pm but I fall asleep after twelve usually at around 2/3 am. After falling asleep I usually wake up 1-3 times during the night for no real reason. After only having roughly 4 hours sleep (if I’m lucky five hours) I will wake up and be completely unable to sleep again until after 12 that night. Although I don’t have cfs I know what the brain fog feeling is like as I’m constantly in a tired daze during the day and I’m unable to function in school as my concentration span is literally thrown out the window?

  41. My friends and family have little sympathy for me when I get like this. Luckily I have a really understanding bf that tries to comfort me. Most of the time when I’m like this though I just want to be left alone and not physically fussed over. I’ve been having an episode now since a week before Christmas and it’s been so damn draining. I’ve tried explaining to my boss what it’s like but I doubt they get it.

  42. I am thinking I might be suffering with it too… such long lasting fatigue and absolutely no energy to do anything. I'm really scared and afraid, specially because I live in a place where doctors are very prejudiced against invisible illnesses and also things (like appointments and exams) take really long…

  43. I too have CFS, it’s due to my Hashimotos disease and Fibromyalgia. It truly is awful and because people can’t see it, I don’t look sick, they are not sympathetic. Thank you for sharing. ?

  44. You surely are a treasure. I'm really happy to have come across you. You're like a key you have to pick up in a video game to proceed. Such an angel.

  45. I have CFS/ME, I knew exactly how you were doing the moment I saw your beautiful face and you started to talk. Thank you for having the courage to show exactly what we deal with. I tried to do some laundry, tried to clean, Im too lost in the fog, so Im back in bed. Bless you darling.

  46. Thank you for sharing this. I got an auto immune disease which makes me suffer . Sometimes,I just hate myself! Or I feel sorry for myself. I felt not alone now.looking at you ,you look like a Hollywood star from old times . You are a beautiful person inside out. God bless.

  47. The other day I made tea when I had brain fog. I made some for my Dad too, and when I went to put the cup down I tipped it and it started pouring out. My Dad had to tell me to hold the cup upright before I realised that that was why there was tea everywhere… It's so annoying! It makes me stutter too. Props to you for making this video whilst dealing with brain fog. And congratulations for still doing your exams! I was very ill when I did my GCSEs and it was the hardest thing I've ever done

  48. Thank you for your strength and courage to show us what it is like for you and i definitely understand how brain fog can be so debilitating. I live with ovet 12 chronic illnesses and some of them cause brain fog. Sending hugs to you

  49. I don’t have CFS, but I am tired very often because I just don’t sleep right, I guess. So I know it suuuucks. I don’t want to do anything, work towards any goals or work on anything. All I want to do is lie down forever. Much sympathy to CFS sufferers.

  50. I like this video
    This is just like me when I am having brain fog and before deteriorating in to my paralysis.
    Your so beautiful by the way.
    Sound of your voice is beautiful too.

  51. Oh! gentle virtual hug I've had fibromyalgia/chronic Lyme since I was 17/18. I can relate so much to many of the things you experience now with the CFS. It truly is like being trapped in a drunk cloud. You are SO inspiring. Beautiful soul. Such a long, rough road you had. Much love to you.

    It's disheartening to have to pass on social events, move slower, need help with "basic" activities. I feel that having these challenges makes or breaks our spirit, as people. It's so encouraging to see a similar soul, not taking life too seriously and learning to find happiness in the little pleasures of life….and understanding what's really important. You are absolutely amazing! Take care of your needs. ?

  52. I've been sick for a long time and feel alone with it. Thank you so much for giving me hope that I might be able to survive and have a happy life just like you have. All my love to you

  53. omg, i have been following you for years but for some reason I have never seen this video. I knew you have had alot of medicall stuff, but not that you have ME/CFS. I recently got diagnosed myself after been strugglig for many years. I see alot of myself in this video and i am glad you shared. Some days i am barely able to speak because of my fog. today is one of those days. thanks for sharing <3

  54. I don't have CFS, but I have DID and I do get brain fog from dissociation. It can be really hard for your thoughts to just… not happen.

  55. Thank you for making this video. People need to understand this disease. My mom and one of my best friends both have it.

  56. My uncle once had a short illness and felt lethargic after that. We got him tested in a lab and the result was Chronic Fatigue Syndrome. We did visit many hospitals but the cure was very minor. We decided to take him to some Ayurvedic Clinic and searched the net for doing that. And found Planet Ayurveda where we did go and got Ashwagandha capsules and Chandraprabha vati and he retained his health within a 8 weeks.

  57. I am currently unable to sleep due to both a cold and a recent flare up of pain in my arms and legs. So I am just binge watching you

  58. I’ve had CFS/ME for a long time, but this is the first time I have heard anyone describe the feeling so accurately. I honestly started crying because it was just so overwhelming to have realize that I’m not alone, and that other people understand how awful it’s is to have CFS. Thank you for making this video, and thank you for being brave enough to record this while in a fog, as it just makes it so much more striking how similar your experiences are to mine and others.

  59. I’m glad she did this video while she was feeling this way because she’s so pretty and so well put together usually that it’s hard to imagine or believe she even has any disabilities at all.

  60. She is so brave doing it while she was in a fog this is so insane and I’m really really proud of her.

    (I’m sorry but she looked really cute with her hair in this video)

  61. I have ME for the past 14 years after Epstein-Barr virus. Thank you for making this video. You are absolutely beautiful and adorable!

  62. it’s amazing how much cfs sounds like fibromyalgia. If you’d said you had fibromyalgia it would have also fit.

    Thank you for doing these videos.

  63. I suffer from Chronic Fatigue and have a question and would really appreciate it if someone could answer ??

    Here's the deal:
    Recently I read a lot about how a sense of being socially isolated and sense of loneliness can harm our health (lowering immune system function, increasing emotional distress and anxiety, cause interference in sleeping patterns/poor quality sleep etc).
    I have an opportunity to join a student village, but I highly afraid that being highly or even moderately socially active (events, meetings, volunteering responsibility etc) would harm me and will worsen my health condition (tiredness,pain etc).

    So here's the question:
    Should I join the village or make an effort to be socially active in other ways or should I be alone Most of the time of my recovery to allow my body to heal (and not pushing myself mentally& emotionally in some degree, to meet the social requirements) and then, hopefully one year from now, return to be socially active?

  64. Please Read All Of This Message❤

    I am now completely bedridden after 14 years of ME after the Epstein-Barr virus. It sure feels like I don't have much time left here on Earth. I now have a DNR which means do not resuscitate because I can't live like this any longer.

    I'm suggesting that everybody watch this video and show it to their friends and family and especially doctors because in three minutes this video will educate them very quickly on what our lives are like with this horrid illness.

    YouTube: Channel Open Medical Foundation – OMF "Nothing will be the same again – living with ME/CFS.

    Please watch the video but remember that at mark 25 seconds there is a quick and short succession of strobe lights. I guess it was to make their point but that should have been left out of the video.

    May God have mercy on each and every one of us and completely heal us of this horrid illness?????

    I'm sending love to all of you from the City of Tucson, Arizona USA❤

  65. I have fibromyalgia but this sounds so much the same as the symptoms you describe. I know I can have CFS at the same time as Fibro, and given that my main issue (now) is fatigue, it makes me think I have CFS too.

    I’m alone with no family to help me so I just had to stay in bed for days. Crawled to the bathroom when I needed the loo. Food delivered – mostly cereal and microwave meals.

    I don’t know how you past your exams. I’m terrified of going to uni but I want to. I’ve been ill for 8 years. I’m completely exhausted and trapped ??‍♀️

    I’m 39. After caring for my sick son for 9 1/2 years (kidney condition and adhd with no help whatsoever), it’s like it’s all been erased and I have nothing left.

    I’m currently still stuck in bed. My flat is a tip (it’s a dump as the landlord is lazy – crumbling walls, ill fitting windows, mould, electrical issues ?) so hard to keep clean due to my fatigue and I make a mess within seconds of trying to tidy. And of course the place is full of dust due to my lazy landlord making my situation worse.

    Completely trapped. It’s ridiculous.

    I’m so glad you have a. Good support system. I have nothing. I’ve tried everything and exhausted myself trying to help myself, while those paid to help, do absolutely nothing. Incredibly frustrating and humiliating.

  66. I have Celiacs and my mom has Mixed Connective Tissue Disorder. Since both have to do with inflamation… just curious if you have considered or are gluten free?

    It helps my mom with her inflammation and arthritis.

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