MY DAILY CFS STRUGGLES: HOME EDITION
Вставка
- Опубліковано 5 вер 2024
- The first in a series at looking at the small/big ways CFS effects my everyday life. The first one focuses on home life. Following videos will focus on Travelling, Relationships, Work and more.
I had to film this completely one my own which involved a lot of moving tripods, so ironically it was exhausting to make....so what I'm saying is please watch, so it feels like time well spent : )
DISCLAIMER: This is from my perspective and doesn't represent the lives of everyone with M.E , People with very severe cases may not be able to relate to it as much as people who have my level of CFS.
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
I can relate, I hate having ME, I need to sleep all the time even when I am not even tired, my body just feels zombiefied, people think I am lazy and I am not, I love being active, my body however, does not. And you are so right about night, you'd think we'd drop off at the drop of a hat, nope. And I hate the brain fog, I feel disorientated and its scary at times. And the isolated, lonely feeling, totally agree. Its the same for me and lack of motivation.
I Nala, sorry to hear you struggle too. I am very lucky with how relatively mild mine is but it still effects me every day in some way or another. I wanted to make this video to make people realize that people with it aren't just tired, there's lot of other weird symptoms, or difficulties they may have not been aware of. Insomnia is so annoying particularly when you're so tired. People still don't understand why i don't drive but I genuinely wouldnt feel safe doing so. x
You are not alone millions del with same situation look for me in Facebook as Adi Partida I live in San Mateo California I live with CFS for more than 20 years
You're definitely not on your own, I hope we all find something that helps us soon!
So important I've lost my job because of my CFS and fibromyalgia now I struggle to walk so much now our twenties aren't how we all imagine at all
Eve, I am 29 and have had fibro since 23. I have been depressed ever since and have worked on and off for amazing non profits and I am determined to make my 30's better. I understand how you feel and I want you to know your not alone ❤️
Thank you both 💖 I hope some day something can make us even a smidge better, all my symptoms started at 15 and I finally got diagnosed last year but nothing touches the pain and most days I feel judged for being how I am no family members understand but I'm glad out there someone does 💕
Unfortunately these years haven't been what we imagined they would be and it's so hard not to feel bitter and twisted about it and feel like we've been dealt an unfair hand. Some days I realy struggle to stay positive and grateful for what I do have. But we mustn't let it win. We might not get to do what we hoped but we gotta try and get something, albeit different, but good in it's own way, out of these years. I bet your more empathetic because of it, I bet you have some fuel for artistic endeavors because of the extra time you have to think about things and I bet you appreciate things in life, the smaller, simpler things others take for granted. You can still make a difference in this world, you have a lot to offer
Unfortunately these years haven't been what we imagined they would be and it's so hard not to feel bitter and twisted about it and feel like we've been dealt an unfair hand. Some days I realy struggle to stay positive and grateful for what I do have. But we mustn't let it win. We might not get to do what we hoped but we gotta try and get something, albeit different, but good in it's own way, out of these years. I bet your more empathetic because of it, I bet you have some fuel for artistic endeavors because of the extra time you have to think about things and I bet you appreciate things in life, the smaller, simpler things others take for granted. You can still make a difference in this world, you have a lot to offer
Hey Eva! My dad is 53 and was diagnosed with Fibromyalgia at 52 years old, he developed it two years ago after having a severe bout of shingles and renal failure due to kidney stones a few years ago. He is pain everyday without fail, he's on painkillers and anti inflammatory drugs to control the pain levels. His body aches from head to toe, it's mostly in his upper half of the body that's mostly affected. He has brain fog, and tends to bump into things. He has muscle stiffness every morning, light sensitivity and sound sensitivity. His eyes ache, his hand grip has got worse over the last few months. Memory loss, and dizziness. He's lost sensation in his thumbs too and some of his fingers, he takes anti depressants for his pain and his mental health due to the pain can make him very depressed with how relentless it can be. I'm writing this on my dad's behalf as he isn't too great with social media! Although he agreed to do a Facebook video for a Fibromyalgia group which he'll explain how it affects him and hopefully help other people whom are in the same position. It took roughly 2 years for a diagnosis, he was referred to the Pain Clinic who treated him as he was a liar and made out that his pain wasn't real and just down to depression. The GP whom worked there and seen to my dad point blank told him to his face 'We don't know what's wrong with you, you should take up more hobbies as it'll help your depression which will make your pain go away'. As you can imagine me and my mum, mainly my dad was so disgraced. We reported him to PALS and I'm certain they had a sturn word with him, now after we seeked a second opinion from our local GP my dad was diagnosed last year. I want to learn more about it so I can help my dad and get more of an understanding of how it can affect people, and try to help others in the same position too. I help my dad most days, if he's in pain. Doing housework, cleaning and making beds! Me and my mum help around as my dad can barely move in the mornings. I do love my dad lots and would do anything to learn more about chronic illnesses mostly Fibromyalgia / CFS / M.E. I've got a huge lot of love for all the spoonies out there, you're all amazing. x
Finally an honest day in the life of an ME sufferer! Thank you for taking precious energy to make this. Love a fellow spoonie! Xx
Wow she actually made me feel like I wasn't weird. People say I am over reacting when I tell people about my cfs/me, they say 'oh it's just a teenage thing' , well I am 15 and have been digonosed 6 years and they suspect I have had for much longer, so no it's not just a teenage thing. CFS is a real life thing that makes everyday so long.
Great work for spending the time to edit this, I don't think I could have. Stay strong, your an inspiration to alot of people x
Oh we all those sorts of things - is it just being a bit tired. But you haven't done anything to be tired. We all get aches and pains etc. hope you have some people around you that make the effort to get it though. xxx
Yeah, my family are really supportive and understand (sometimes). I also have a friend who I met at the hospital in one of the support groups they have for CFS, it is so nice to have someone who has the same problems that I have. honestly, I find you such an inspiration, I am looking to start talking about my Cfs on my youtube channel. I don't usually tell people about my CFS because I know the response will be "oh your faking it" or " on I have it too then". sending you my love and stay strong.
I am so sorry. They will find a cure.
You have described my life almost to the T. But I can’t get out of bed at all now I have had M/E Chronic Fatigue, and Fibromyalgia, Degenerative disc disease. It seems like my family doctor, my pain doctor and my family doesn’t quite get it yet of what I go threw how I really feel or how bad it really is! I feel mine is truly at its worst right now! Really bad! Somedays I wished I had cancer and wished I was dying because nobody understands how I feel what I’m going through right now. I feel so alone other then when I watch you and some of the others. Keep fighting! Keep posting maybe someone will hear us!
This is my life too.
15 years of this after EBV😢
After 30 years of this boy do I understand . Lost friends can't get out to make new, no energy to keep friendships that used to have. Been long lonely run. Husband of all this time pretty good but no one can understand the depth of this and all it's aspects until they have it I am convinced Hope your having a better day..
Thank you so much for making this video. Everything you said, I have. Everything you do, I do. From sleeping in my clothes to hating the shower because I can't stand up and just brushing my hair afterwards is a whole task in itself. I'm also really overweight so all of these symptoms are worse because of it. I don't have many friends left because I never want to do anything. It's been hell for roughly 7 years with no hope in sight...
It's so hard isn't it, you gradually get fazed out the group because you've turned down so many invites they stop bothering. And people seem to forget that they could make the effort to visit you. I'm sorry you have all this to deal with, but as you can see from the comments you are definitely not alone in this. Sending love xx
Sophie Eggleton thank you so much❤
this was really informative Sophie. i hate knowing that you have to go through this though, and so many things i take for granted are difficult for people with cfs. here for you
Anastasia Tasou Amen!
💙💙
it was like watching my self.. every little bit of energy is so important.. expending any of it is like a gamble..but i'll use some to comment cause I really enjoyed the video
I can't thank you enough for this video. I've been wanting to make a video somewhat like this, but I can't ever figure how. (You may have just helped with that, also) I love the humor of it all and the style you chose to film it in. It seemed a cross between some acting, but also you on a bit of a better day showing what goes on, which is very helpful.
I have no idea what the heck I even have, but this has been my life for the past seven or so years. Symptom after symptom after symptom. Finally got my first paying job and after one day, my body went CRAZY and I've been out for three weeks, terrified to go back in even though I love it there already. Thank you for taking the time to make this video and through showing us through your eyes you've accomplished one of many goals of showing that we are not alone. You are amazing! :D
i can relate to nearly all of these.especially trying to do my hair-and yes feel unwell if i have my arms up too long.
Makes me want to cut my hair short!
@@SophieEggleton I did it
That's why I removed it. Too exhausting. Every ten days my electric hair cutter is not as tiring as the alternative...
Yep had that 30 years ago and boy the looks I got then. Now we all can connect and talk amongst ourselves. Used to curl my hair. Now if do must sit and bring my head down to near waist level to put a curler in.
Thanks for making this video Sophie. I've had CFS for just over a year now and you've helped me to realise (even though it's still hard) I shouldn't feel guilty for lying around and cancelling on friends x
Hannah Waterman no please don't. It's not your fault, no one would choose this! Look after yourself xx
This video feels poetic in a way, I love the way you've edited this all together. Thank you for this honest look into your life.
This made me fill up as I have my dad whom has Fibromyalgia which is very similar to CFS / M.E. He struggles daily with pain and extreme fatigue, he was diagnosed last year after having extreme shoulder pain which travelled slowly around his body. Then he started to get fatigue, different pain sensations in the body, he had an EMG to test if he had Carpal Tunnel Syndrome which came back negative. Then he saw a pain clinic doctor whom simply said his pain is down to depression and nothing more. He gave him some chilli based cream (I'm not certain of the name?) and told him to get more 'hobbies'. Me, my mum and my dad had to fight tooth and nail to get him help and we still do. After 2 years he was diagnosed with Fibromyalgia and Osteoarthritis, plus he has IBS. He's sensitive to lights and sound, his hands are weak and his body is in pain every day. He's on painkillers and anti depressants to help the pain, although before he was on just codeine but it didn't make any difference. They weren't sure at first what was wrong with him, he's developed it after having shingles and kidney problems. They think his central nervous system has got in such a 'wind up' state of pain and the body having trauma. The GP thinks that's the underlying cause. Sorry for the long message but it hits close to home. I see my dad daily battling Fibromyalgia, and seeing you battling CFS must be so hard at times with how exhausted it can make you feel. Thank you for raising awareness, much love. Like you, my dad doesn't let it win. Even though days he struggles a lot but you're amazing for letting people in to see how this condition can affect someone massively day to day with the symptoms. X
It makes you feel like you're 100. I use infrared saunas to help with my sleep. They can be knackering to start with but I find I always sleep better when I have them. This made me cry, it's how I feel. Do you have a video on your treatment path so far?
I can relate so much! I've been house-stuck for nearly 6-7 years now, I got ME(CFS) when I just finished my degree. I think I was around 19-20 when I first got it, I'm now soon turning 26.. It's like half of my life has just vanished, I try not to think about it and take one day at a time. I look forward to minor things like dinner or other small things, I can barely play any video-games for certain long period of time and have to take breaks. I was thinking to myself "I'm I getting worse?", "what will happen if I can't watch any TV or sit on my computer?" I feel like that would just suck horribly, I hope that one day I will get healthy again and start getting my life up and running again. Thanks for making the videos!
Was at end of first degree struck real bad they had to get me a chair to sit and wait before we matched in our robes to auditorium to get our degree I was so exhausted couldn't stand there to wait. Was about 40? Late bloomer! to get first degree going half time took 6 years for 2 year degree but I did it.
I love how you filmed and edited this. Your honesty is wonderful. I suffer much of what you explain but don't think I'm quite as bad. It's weird as from your blogs I assumed I was a little worse than you. Shows how deceiving social media can be. People see you looking well and in London etc and can't understand how that can be you being sick but they don't see all the rest of the time. You're sharing such an important message x
It's a weird thing isn't it because it's so hard to judge who's got it worsd with an illness like this because there's so may symptoms and we all cope with things differently, and it might be considered harder to deal with if you're a mum and having to look after your children for instance, so even if the level of it is less it may be equally as difficult as someone with a more severe case who doesn't have children to look after. I think the fact I push through sometime and do more than I should works against me because then work people and friends presume I'm well and should therefore people to attend all social events when they don't see the recovery each thing I do go to requires. I hope you're doing ok and so pleased to see how regularly your blogging, its fab xxx
Hi Sophie, thank you so much for being so brutally honest about how ME can interfere with our lives especially when there's so much shame and misunderstanding we receive from society. I've personally been suffering from moderate ME now for about a full year. Learning that I'm not alone in this battle has made me feel more sane, less lonely and helped me come to some sort of peace with my situation.
From my personal experience in managing with ME I have found that daily magnesium and vitamin B-12 spray-ons, acetyl carnitine, D-ribose, Co Enzyme Q10, vitamin D supplements and vitamin C supplements before sleep has improved my symptoms quite a bit. I've had less joint pain, fatigue, dizziness and heart burn ever since taking these supplements.
I also wanted to say that as hard as living has become please don't give up right now because there has been more research and discovery about this disease in the last year compared to the past 30 years. Organisations such as Open medicine foundation and ME association has been funding research in ME and there was just a new breakthrough. Ronald Davis at the Stanford Medicine team has invented a device that could differentiate normal functioning cells from ME cells and they're testing different chemical compounds on this device potentially finding a compound that could cure the root of this disease. (link down below) Furthermore the NIH has doubled its investment in ME from $7.5m to $15m in 2017 bringing more attention and funding to researchers. Yes there is no guarantee a cure will be found in the next few months by Ronald Davis' team but we're definitely in a better situation than ever before in history. I know it's a lot to ask but it would be great if you could advertise Open medicine foundation and ME association on your channel. These organisations are mostly run by donations from ME patients and their families and friends. Any advertisements or donations can be a step towards finding a cure and an end to all of our suffering.
www.meaction.net/2017/02/22/stanford-team-announces-breakthrough-in-mecfs-research/?mc_cid=8e687a1e8e&mc_eid=487ffbd68c
I am same boat of 30 year battle. Started support group ran for 23 years. I am to old and tired now. Was good for 440 people who attended from about 1992 to 2015. I take same suppliments they help but age is enemy now getting old almost 70 no help. Got in my late 30s. Hope is cure for you before age gets you. I waited all these years donated money and had others do same and nothing so no more donations. they got me nothing in 30 years of studies how long does take to even say for sure what causes this? Anyhow good luck to you.
As much as I’d never wish this godforsaken illness on anyone else, it’s slightly comforting to know others go through it.
I had years of hell with no diagnosis before a doctor told me I was showing signs of myalgic encephalomyelitis but, as she didn’t believe it, I couldn’t have it. I asked how I could have symptoms of an illness I’d never heard, but was ignored, however she told me she first thought that 4 years previously.
ME became the biggest burden in my life. I managed to somehow drag myself through work, but I’d get home and sleep, even right through weekends. I’ve lost contact with all my friends due to it and any time I’m fatigued, I worry I’m flaring up.
I was in a seriously bad car accident in 2016 and hadn’t flared up since. Thought I was past it. Then, 2 or 3 weeks ago, I picked up a viral infection and, though I’m through the worst of it, I can see the signs and fear I’m circling the drain.
If I’m honest, despite the coma, broken neck, back, femur and every bone in my right arm, despite the punctured lungs and being warned I may never walk again (I was on my feet unaided and back at work in 4months), is drive under another truck than flare up again. At least with the accident, I knew what I had to do, I had a plan of attack: get on my feet, work hard, train, give it my all. I knew I could fight that.
A flare up? How do you fight when not fighting is you best hope? How do you battle from your bed?
When it comes, when it consumes you and surrounds you, you just wish it would finish the job... crush you, take you into the darkness, spaghettify you, anything so you didn’t feel like a useless lump of meat stuck in someone else’s body that you’ve no idea how to work.
It takes everything from you, and all you hear in return is ‘it doesn’t exist’ or ‘go to bed earlier’
Gio Marron, " How do you fight, when not fighting is your best hope? How do you fight from bed? " Amen! Truer words were never spoken. At this point my biggest fear is existing ( notice I don't say living ) like this for another 40 - 50 years!
wow Sophie! you're a tough woman!! and you're so brave for sharing this with the world!!
lots of love
I don't feel tough. but you gotta use what your dealt so people will have to just hear TMI from me I'm afraid! x
Sophie you are so thoughtful honest and kind making this video, as it shows exactly what it is like to have this disease every day and what a battle it is even to go out. I have this too, and the way you have explained the many symptoms is absolutely brilliant. My heart goes out to you and I wish you all the love in the world.x
What a lovely comment. Thanks so much for taking the time to leaving some a caring message. Sending lots of love and hope that you have a nice weekend x
That’s pretty much my life, although my regular doctor put it down to my age as I’m fifty! Another doctor said it probably is ME / CFS and I need closer monitoring. It’s not easy either living alone! Take care 👍
Yes! When my arms are stretched up I do get a bit light headed (and a weird tingling in my legs if I'm standing at the time), been like it for years. I am also getting the odd spate of itchy bumps/rashes. I thought they were early Spring mosquito bites, but they've gone away far too quickly for that!! I cut my hair last year, finally just did it. It had got so long, to half way down my thighs! I had treated it pretty well over the years and managed to sell it. It's easier to wash and brush now, but I left it long enough to still put up out of the way 99% of the time. Since doctors are powerless to help all the myriad CFS symptoms, we are forced to try things ourselves, and support our bodies to heal, hopefully. Every pharmaceutical they've given me to cover up the symptoms have either never worked, or stopped working and had side-effects anyway. Have you ever gone a month or 2 with zero dairy, to see if that helps the IBS? Since I went totally plant-based my mysterious hormone imbalance has settled down for the first time since puberty, my lower back problem has never returned, and my joints don't hurt at all now, although they still click. Wishing you more and more good days! Thank you for still making videos! xx
Great video. I had mono at 21 (glandular fever?) and never fully recovered. Now I'm 68 and totally disabled for years. Everyone with this should avoid all contact with petro-chemical & other chemical fumes of any kind...paint, stain, adhesives, new carpet or upholstery..... Over exertion of any kind is very dangerous. I was a skier & climber and learned the hard way. These can start terrible relapses. Hyper-inflammation destroyed my hips & lower back. I got a metal hip replacement that leeched huge amounts of cobalt & chromium into my bloodstream for 10 years. The surgeon & manufacturer never notified me of problems with that model.... I gave up thinking about friendships this destroyed. When this starts to get me down, I ask if fretting about it will in any way help make me better. Good luck!!
Excellent video. I am older, but have had this for many years. Some days are OK, others lately have been worse, with both the pain and stiffness, and the deep, grinding fatigue. Brain fog is the pits. I still work part time but it is getting harder. I am currently taking large amounts of colloidal silver to see if it helps. Someone mentioned going to bed early, and that helps too. I take cortisone for the pain, as some days I can barely walk. But the doctor did not order it, I had some left over from my cat's vet. I took a chance one day and found it helped a lot with the pain and stiffness. A sediment rate test for rheumatism for me was borderline low, as my mother had fibromyalgia rheumatica and had all over body pain for years.
I've had CFS for years and this is the first time I've searched youtube for someone elses experience on the subject. I've been feeling really defeated and down on myself and its wonderful to know that I'm not the only one living this way. Thank you.
So sorry to hear you're dealing with this too. But i'm glad you found me here. There's lot of us that understand, so please never feel alone. sending lots of love xx
Brilliant, brilliant video. I love how you keep things real and honest especially with the "TMI" moments. I can relate so much so I really appreciate this. Beautifully filmed / edited by the way x
Haha you'll always get TMI with me I'm afraid! Think I've lost my filter...and in all my mess I'm not likely to find it again. Thanks for watching it xxx
I totally agree with everything you said ....M.E. or C.F.S + Fibro...is so hard to relate to others ...spot on ..hugs from Kat in Australia yep also have C.P.T.S.D , MAJOR DEPRESSION , ANXIETY , the list goes on , thank you for your videos from a fellow sufferer ,,,sending you so much love and gentle hugs xxxooo
Thank you so much for raising the awareness of our reality Sophie x
Thanks so much for watching. I hope you're doing ok?? xx
Sophie Eggleton thanks Sophie I'm actually doing well at the moment, the time of year gets me a bit but I think I've got to a point where I'm evening out the crashes, touch wood, it's been 4 and a half years! I've started vlogging to get my brain back and chart my progress, if you'd like to check it out I'd be really flattered. I'm hoping to climb Mt Snowdon and having that goal has really helped my mindset 😃😃 sending love xxx
Sophie! I have quite severe CFS. I know what you mean about the hair drying thing - my hair was past my hip and so I got my hair cut right to a bob. I recommend. Even if you think you won’t suit it, it’s worth it. 🙌🏼💜
I cut my hair this month! Its now resting on my shoulder and has made a huge difference xxx
Sophie Eggleton yayyy!!!! Xxx
What a WONDERFUL gem of a human being you are Sophie!!
Oh what a lovely message to leave! First thing I’ve read this morning, thanks so much for starting my day so happily! XX
@@SophieEggleton It's all you my friend, all you. I'm just the messenger. The Divine is within us, a mirrored reflection of our present state of ourselves, is the outside world. Thank you, wish you the best! :)
Although you mentioned in the video that you cut your hair, I reckon cutting it shorter would both suit you beautifully and be less effort. Since I cut my hair shoulder length, it's easier to maintain and causes less neck pain/headaches especially when it's wet. And I very rarely blow dry it. It takes way too much energy and it's better for your hair to air dry anyhow. I save heat on my hair for special occasions. The way I dry my hair is by using products that work well to tone down the frizz and sitting on the couch or bed with my hair draped over the back so it's not sitting on me coldly while I read, watch UA-cam, work on something, nap, etc.
I also have ME/CFS and have for a decade. I was told I had "chronic fatigue" when I was 11 but at the end of high school it got worse. I was bed bound for part of age 21, but it got a little better and I have been able to work part time. I'm 28 now. I try to cut corners where I can to save energy.
Thank you for sharing your story. Especially the video about shame really helped me and I'm sure so many other people. I HATE that other people go through what I do but it is reassuring that we are not crazy. We are meant for so much more than these problems allow us to do.
I have just recently been diagnosed with CFS/ME, after struggling since early 2014. It has affected my mental health badly ( which was always slightly shaky) and the struggle to keep going ( working ect) while not understanding what was wrong has taken a real toll on me. For a long time I blamed my mental health for my symptoms and beat myself up even more because of it. I eventually lost my job after a breakdown. Though it is a kind of relief to understand that there is another cause not just my mental health. it is also very scary as the medical profession doesn't seem to have any answers. Your insight to your day resonated so much with me!
It's been 30 years of this. One thing that has helped is internet and cable tv. Least something to do and see others like ourself. Was very lonely life before. You lose friends you had and can't get out to meet and make friends. Before had to go to a bookstore and hope was a book or something on CFS or fibro. Or go to library on that one good? day. Thanks for the video. Hope your having a good day.
There needs to be more awareness and more efforts into finding healing. Every person is different and different levels of cfs ..... i wonder if EBV is a culprit in a lot of cases. I have suffered..... in my suffering i have gained much compassion for the sick.
I’ve recently been diagnosed with CFS and over the past 7/8 months my health and quality of life has decreased so much.. I find it so hard doing the simplest of tasks (i.e. brushing my teeth or going in the bath). Work doesn’t seem to understand and just call me lazy or tell me to sleep more, it’s frustrating as not many people know or understand about this disorder and how difficult it can be. I get my good days and bad days but I never know when these days may be.. luckily my family is very supportive and understand that I struggle with the simplest of tasks and even getting out of the house which I’m very thankful for! Watching this and realising I’m not the only one who’s going through this really helps me and makes me feel less alone! Thanks for sharing your life with us ❤️
I’m sure this has been answered already, but for bedsores, the best thing is to avoid them! Make sure you turn yourself every couple of hours, from side to side. If you start getting that weird feeling (may be a bit tingly or just “off” you need to rub the are, massage it and take care to give it special attention. There are specialty beds to prevent them, but here, you need a Dr. order and proof of bedsores!! I’m not sure if it’s the same for you.
I am bedridden and a retired nurse. One of the hospitals I worked at had a patient who had been in a coma for (at the time) 20 years. He’d never had a bedsore, and that was a source of pride in hospital.
You are Adorable and funny, and now I must go to sleep to start playing catch-up with your videos. I believe I have an adult daughter who has this. May God Bless you, Dear. ❤️🌈❤️
Hi Sophie, sorry for your struggles, get some over the door hangers/hooks help with the mess without much effort, I have one behind every door. In the morning I get a multi vitamin, coffee without sugar and a smoothie with protein powder ( helps). At lunch whole wheat bread with cheese with coffe( I bring the sandwich from home, cheap. A half a vitamin b150 gives me energy in the afternoon. On my day off, I cook a big meal, cacciatore or beans or a casserole or lentil soup, stew etc, anything hearty that you can eat the whole week( practical, healthy and cheap). I hope it helps, I am on my own so I learned to be my best friend, best wishes always say to yourself I am well, I am well, I am well anytime you feel meh!!
Great video. I like how you can inject some humour into a dire situation. I can identify with a lot of what you said. The money situation is something I'm struggling with at the moment. I'm realising I can't work full time hours, but in not being able to do that I'm trapped living with my parents. Debating looking into whether I can get some benefits. But the horror stories I've heard about DWP make me wary. M.E is such a shit illness, made harder by the fact they nobody really cares and just thinks you're lazy or weak. Thank you for reminding me that I'm not alone :)
Haha I try to because I don't want to complteely depress people about our situation but I never know if its a bit distasteful to joke when talking about something serious like this. I'm having the same conundrum. I want to go and see if I can get a pip allowance but the forms and the fight you have to put up I hear is pretty big. Just having a bit of cash coming in would so help with the stress that comes with not being able to work and the fear that you'll never leave the family home.
Sophie you are so strong 💗
I can't imagine what it is like dealing with CFS, hope you are doing well and sending all my positive vibes ✨
Thanks for letting us know we’re not alone. I struggle at least three or four days of the week with migraine, cfs , and/ or fibromyalgia/poly arthritis. After many years I’ve come to terms with these problems and continue to teach yoga and volunteer for children’s services. The struggle is mostly trying to hide, disguise symptoms or make excuses up for people who don’t understand why I sometimes don’t leave the house in my free time. And often the thought of cooking or returning a phone call seems monumental. I wish you all the best and a return to good health
wow you get it. I actually buzzed my head so i dont have the maintenance of hair. i too don't shower for days and days. I think the worst part about CFS is what others think of you. they just don't get it and don't understand that you are ill and cant function on a normal level. I am happy to know I am not alone. thank you for this video. this describes me 100%. I wishing you well. look forward to more videos.
I'm not pleased that you are going through this, but it is a comfort to hear from people who get it xx
Wow. A lot of this matches my own situation. Thanks for sharing. I had to lough a lot..
My CFS isn't quite this bad. I just filled the slow cooker with jambalaya. Less effort than standing over a stove and I've made enough for 6-8 meals. Modern gadgets really make life so much easier. Instant noodles are great for a quick meal; I just add some frozen veg to bulk it up and make sure I'm eating something healthy.
Jambalaya sounds lovely. I struggle a bit with food allergies so that adds another complication, but youre right things that you can put in the freezer that will feed you for multiple meals is really helpful. Hope you're feeling ok at the moment. Sending love x
I was just diagnosed. I could relate so much to your story. Thank-you for not making me feel all alone.
I feel like you are my twin making this video for me... oh, how I can relate! You did a fantastic job on this video explaining it and putting it together. Thank you for giving us a voice. ♥
Hi Sophie just found you on you tube in the US. I am 72 years old and have had ME for over 30 years. I can SO relate to you. I had long beautiful hair like yours but made the decision to get it cut short some years back. Unable to make it to a hair dresser i sadly cut it all off myself one night. I so miss my pony tail but gotta say i can only wash my hair in the kitchen sink as i can't stand up in the shower. It is easier to wash now. And me too, i can't shower anymore so i have to stand at the sink when i can which isn't often enough and get a 'sponge bath'. Some times i feel so dirty and sweaty i want to scream. I also get those small itchy bumps or pimples. I say KUDOS to both of us and anyone else with ME. Lots of love to you all with ME.
Hi Pauline. Lovely to hear from you but so sorry you have had to live with this for so long. Since this video I have gone very short with my hair, it's chin length now, which is so much easier to look after. It's made a big difference, but I am finding myself missing my old hair at the moment. I still probably don't wash quite enough, but I bath and wash my hair in the bath every few days but I don't leave the house too much so it's only me, my partner and the new cat who have to see me looking less than glam! Kudos to anyone living with chronic illnesses!! all the love xx
Sorry to watch that you have such a difficult time, you are a beautiful soul x
Tracy Lambourne sending love to you Tracy xxx
I haven't been on UA-cam in ages, but happy to see you are still making these videos. Also happy to see I'm not the only one who struggles with standing or who is sometimes too tired to take their clothes off before bed. I had to set my card pin as my phone pin. I kept forgetting it at the till. Hope you're having a good day xx
Every thing you said is true. Some days I can’t brush my teeth. It hurts to take a shower and I get so dizzy. My skin can itch, I have insomnia and I don’t go anywhere. And it’s so frustrating, I have become reclusive and I miss me.
I share many of your issues but remain undiagnosed since 2018. I have stopped talking to most of my family and friends and have no interest in meeting new people. It blows my mind that people think this is how anyone would choose to live. I am 52 and feel 82. I sold my kayak, which I thoroughly enjoyed and I am contemplating selling my truck . I used to love going off road but I might have put 2000 km on my truck since 2018 with zero km off road. I had planned to add a 4" lift and 35" tires to my truck, not going to happen. I always wanted to buy another snowmobile but if I won the one I want, I would have to sell it. I have seen multiple doctors and they do not believe me. They do their test and give the results with "I can see nothing wrong with you."
My pharmacist printed off a list of 4 pages of the different drugs I have been taking since January. I had 2 different Pulmonologists get angry because they believed I was wasting their time. They were ok with prescribing strong steroids that I have been on since 2019 but I must be faking it. The steroids also take away my voice, I cannot talk for extended periods. I am lucky that my wife is semi-supportive now, not so much in the beginning, very few people are. I was a courier. Any time we would go shopping together I would have to make a conscious effort to slow down, I walked fast. Now I race with Sloths. My chest is always tight and in pain, I only lay down to sleep when fully exhausted. I am dizzy when I move; I fell down some stairs and broke my ankle in 2019. My eyes are always sore and I have a non stop pressure headache. Brain fog makes me feel stupid. I used to walk into a room having forgotten why I went there but this is a new ball game. I make stupid mistakes that I would never have made before.
I sleep between 20 min and 5 hours at a time, multiple times throughout the day. They are not naps. I crash. I would love to wake up feeling rested. I do not shower every day, doing dishes is a struggle and I have never been this overweight. I also have Gastroparesis, of which the ass doc wrote on my diagnosis that I was lazy. For 20 years prior to this I have owned 3 dirt bikes, one snowmobile, downhill and cross country skis, windsurfer, kayak and enjoyed bowling and fishing. I bought a $1200 BBQ in 2015 that I loved to cook on prior to 2018, I find it too much work now. Just saying that sounds crazy to me. When I prepare a meal it is basic. I would like to say that I would not wish this on anyone but for everyone who thinks I am faking.
Oh my goodness, I just came across this video. It has made me feel much less isolated in my battle with CFS. It's so hard when your partner, doctor and family don't understand. University has been made near impossible. Thank you so much for sharing our struggles with the world.
Very much my life too. Thank you for sharing and putting it in a video. Xx
Hope you're ok xx
Im trapped living with a boyfriend whol holds everything over my head all the time. I clean, i cook.. its never enough. Im too exaustd to work. Id rather die than keep living like this anymore
You dont have to be like that
You're a great filmmaker! I have CFS too and like to watch other vloggers for inspiration and confidence, because I often feel I complain too much, that my life sucks to watch because I'm just a ball of drama and trouble, or that I have nothing helpful to offer. It's good to be reminded that people find value just in having someone to relate to.
It's so amazing that most people would watch this video and think, " What in the world is this young girl whining about, why doesn't she just get up and get off of her butt and get on with her life?" But I am 65 and have just gotten into the depths of CFS myself and I say, I am proud of you. I know your pain and isolation. But I also see your strength and I know you will get through this and have the life that you only can dream about now. Hang in there, this will pass soon!
Sophie ! your such an inspiring person don't forget that ! I really love you ❤
Van way too kind. Love you xx
This was brilliant, sincerely another sore bummed, tired person ❤️
Aww sorry to hear that. sending love xx
ilu so much!! and this means so much to me :') i can't even put it into words xx
Well you've made the achey arms from filming it worth while in that one sentence. Lots of love xx
this video is so amazing and helpful. peep Ana's shirt in the beginning too!!
So sorry you also have to deal with this ....... One of the better representations of ME/CFS THANK YOU AND VERY GENTLE HUG better health much love and light (gal from oz)
Sending you a hug too. xxx
This made me feel better about myself, thank you.
I’m really glad to hear that. I hope you’re doing ok xx
Thankyou so much for sharing! You make me feel atleast normal😊I recently found out I have Fibromyalgia, and its really exhausting to explain whats happening to me, the struggles to do anything, to sleep, the online shopping, the no money, the weakness and inability to do much with your body, the friendship parts, I sometimes get scared that everyone will leave me after being fed up, also i get depressed alot. I know even without cure things can get better, so im staying Hopeful! Thanks again😁
Omg I can relate to all of this so much!!!
Always Avallon I'm sorry you can relate! Hope you're coping ok and have some supportive people in your life xxx
This was very well done. Keep vlogging, you’re a natural! Applaud you for being so honest and keeping a sense of humour
I had corona virus infection 5 months ago and it gave me scarring of lungs and pneumonia. I'm still suffering from breathlessness and chronic fatigue which I am finding hard to overcome. I can sympathise with your dilemma and thoughts and i miss the physical and mental strength i use to have . Stay strong and God Bless🙏🕉
That was a great video...loneliness is hard I go to church film
Nights! ✨✨💞💞
That's great that you have that, what kind of films, a bit of everything?
This was so well put together. Luv it, luv u, keep going x
Thanks so much, I'll film the other chapters when I get some energy, that's a lot of tripod moving! Glad you enjoyed it xx
Wearing clothes hurts, eating hurts,my stomach hurts, thinking hurts,reading hurts, sex hurts,hugs hurt, moving hurts,light hurts, sound hurts, texting hurts, hot and cold hurts, loneliness hurts, living hurts but I’m in love with my life when I have a good day. I live for those days
Thanks for sharing, Sophie! I too have CFS and I really appreciate how honest you are about the condition. I think it is important so that healthy people can get a better understanding of what we are struggling with. Anyway, I wish you the best of luck for the future and I hope that CFS one day will be an illness of our past.
Sebastian
Yes, even bedsores @ such a young age and trying to describe Brain Fog is daunting with so much love to offer I find that so many " Healthy Folks" can not fathom the brutal Truth and become SO surprised when after speaking abouy illness still after spending time with me have said" you really are sick" amazing how many can't fathom the Brutal Truth of this illness. I really feel inspired by your life with Simon.
Your realness has made me fall in love with you!
Thanks for sharing. Sounds like me! I will follow up on it...
Literally I have never ever related to anything more than this video. This is amazing thank you so much for creating this
So sorry to hear you relate but I'm glad you found it. Thanks so much for watching and leaving a comment. I hope you're doing ok xx
Sadly so very true . You sound so much like myself . I've had ME for over 10 years now . It's very debilitating . Stay strong and be kind on yourself . Xx
When I get in shower I determine my energy level based on whether I can wash my body and hair or just body. Shaving is an extra. Sometimes it’s shave or wash my hair.
I don’t know if I have ME/CFS but I am always tired, in that much pain that I feel weighed down while sitting at my desk watching a movie, writing is a struggle even though I have written full books within months. I wake up a few times a night, feel like I need to lie down every few hours.
I AM SO SICK AND TIRED OF BEING SICK AND TIRED! AND WE ALL HAVE THE EXTRA PAIN OF DEALING WITH PEOPLE THAT DOWNPLAY OUR CONDITION. I CAN'T EVEN FIND A DOCTOR TO GIVE ME A CFS DIAGNOSIS DESPITE ALL OF MY OBVIOUS SYMPTOMS!
I CAN'T EVEN FIND A CFS SPECIALIST IN THE BIG CITY OF COLUMBUS OHIO!
WHAT SHOULD WE DO?!
Did you see a rheumatologist? That's who back in the day 30 years ago confirmed what my GP said. I would try now what they call these Functional doctors, google it on your phone they will tell anyone in your area that is. I think they will help more also than regular doctor with somethimg natural that will help a little. Regular doctors generally wont. Good luck.
The struggle is real!
I found this really funny and true.
I would high 5 but I'm too tired...
That's why I removed my hair. A few centimetres left, no combing, no drying. Every ten days my electric hair cutter, which is not as tiring as the alternative...
I use a bonnet dryer for my hair which helps loads x
Ooh I'll look into this xxx
I can't believe that I recognize myself in all situations and it's exactly the same. My mind says one thing but my body says different. And that leads to depression. But nobody understands me. We have to fight it.
Lol I loved this comical look at M.E, I can relate so much, I find myself rummaging in bins and drawers all the time and not understanding why I'm there lol. You're the only other person I've heard mention the itching etc, I spend most of of my day scratching itches mainly my head and face but there's no rash to see!
I love this video so much. I can relate to everything and it makes me feel SO understood.
This video really helped me to feel less alone. Thank you so much x
Sending all the love! Please know you are never alone, although I understand it’s sometimes very lonely and isolating xx
Ugh...having to wrestle with the bird’s nest on the back of my head! That’s why I chopped my hair off to jaw-length. So much easier to (not) care for! 🙃
I’ve since gone very short too, so much easier! Game changer! X
Love the way you made this!
alex goodwin thank you xx
I did not realize I do go through this.. allergies, going back to bed, coffe did not work this morning. Different changes. I can't plan.
I have bipolar disorder and the depressive episodes give really really bad fatigue and even meds make it worse sometimes, I do get a lot more energy when im not depressed anymore, enough to function but it’s still hard even then to function. I feel like a failure to much as I struggle to go to school and get everything done as well.
Don’t worry...the day comes that you get too tired to turn on the tv. I often don’t. Too tired to concentrate.
Sending love. So sorry to hear how severe it is for you. I hope you have the support you need x
you did well making this video i know how hard it would have been because i have been suffering for about 15 years. i am virtually house bound but not bed bound
i also need to sit down in the kitchen and only use microwave to cook. my toilet habits are very bad. i also find it hard to shower even though i have now got a shower stool so i mainly use wet wipes.
i am in constant pain and same as you i am also so tired and i also find it hard to get to sleep and when i do fall asleep i feel just as tired when i wake up
Yep that my life also 💜🙏🏼💪🏼🌈
I respect you a great deal for contribution of your experience. You may not have a severe case of Myalgic encephalomyelitis but you are disabled nonetheless and experience the same social bias and stigma. Are still as "Backwards" in England regarding CFIDS than in US? Is the research at US destroying the socialized medical stance on CFIDS and that ridiculously cruel PACE program. Are there ANY CFIDS Drs in England?
Oiling your hair makes removing the knows 100x times easier. You can simply do it before you take a shower. I only comb my hair once a week 🤷🏾♀️
I totally can relate. I suffer from CFS and have tinnitus.. combo to not being able to work and people say I am lazy
I also used to avoid showers/baths cause washing and drying my hair was just too much sometimes, so I chopped it off and that helped me shower more often. Sometimes I would go a week or two without washing (and then I’d be too tired to fight my parents cause they though i was disgusting and I just stayed in bed for almost a day after the shower.
Yeah exactly this. I have also gone for the chop, and i can't believe it didn't do it sooner. So much better? x
LOL @ drying your hair - I have the exact same hairdryer I think and it's way bigger and heavier than it needs to be 😂
You could dry your hair head down so you won't have to lift your arms
I myself don't have this problem with the hair dryer but I find it very difficult to hold up a kettle filled with water and standing at the same time and people just don't get it, they just think that I am being aggressive!!!
It's like you're describing my life. Thank you!
Love the honesty
Thank you for watching xx
I just realized insomnia after a few busy days is my trigger to let me know I’m about to crash.