It's so nice to hear someone talk about the shame and struggle to explain. I feel like no matter how many times I explain to friends and family they still don't get it.
Thank you so much for this. I'm approaching nine years of chronic fatigue syndrome and have faced so much judgment and constant negative comments because I haven't been able to hold down a job since the day I fell sick at 17.
It's so tough isn't it. So sorry you've struggled for so long. What i find hardest at my level of it is that I'm not well enough to work, but not sick enough to get financial help either. They need to make sure ever level of the illness is helped accordingly. x
It's so good to see that I'm not alone with all those struggles and insecurities that comes with this disease. It's hard to stay strong when you're in the age (I'm 27) where all your friends working on their careers or marry or getting kids or travel. And you're staying the most of the day in bed because you're too exhausted. Thank you for uploading!
I feel like I'm just about at the end of my rope with this whole thing - no one understands this it - including myself... I'm RH negative (A to be exact) and it seems like a WHOLE lot of RH Negs have this. Yes! Our own island please!!??
I have CFS too, and this all rings true to me, and have probably a similar level of CFS as you. I am slightly older than you (I think), but am male, and can tell you that it is possible to succeed working for yourself, if you just chip away. But basically you have to work at least as double as hard as everyone else, and the mind fog is one of the biggest problems. Having a partner who is well off is another route, but not a route I have taken ! I live in New Zealand, but my parents come from the Surrey area in the UK. One of the major problem is other people judging, and not believing you have a problem, and that you are lazy. Even family members and friends. Maybe that has helped me try to prove that I can succeed. I have even been told by some doctors that they don't even believe in the condition, even though it is a recognized condition these days. Stay strong.
+Style The Two it's one of the only things I can do, so I'm going to keep doing that. Thanks for watching and I hope you guys are having a good 2016 xx
Thank you so much for posting this Sophie. It has brought me some comfort to know I'm not completely alone. I was recently diagnosed with ME & Fibromyalgia after a year of losing my job and lots of tests. Everything you said really hit home with me. I rarely see my friends or family due to chronic pain and poor mobility but I have been blessed with the most amazing man who I live with. I'm still struggling to explain to family & friends how I feel as I'm sure you understand exhaustion doesn't quite cut it. My brain fog is also a real struggle so any tips would be much appreciated. Love & hugs from Edinburgh xo 💕
OH MY!! It was like I was watching myself talk on camera! I SO understand EVERYTHING you said!!!!! I wish I was your Pen Pal so we could chat back and forth by e-mail. I also have CFS along with a syndrome called POTS/Dysautonomia (which it sounds like you may have - symptoms: can't stand long/fainting/fatigue/tachycardia/gastro symptoms/brain fog etc., please research). Anyhow, I used to enjoy my job as a Nail Technician but had to quit a few years ago due to health. I am almost 35 and my husband and I had to move back in with my parents since I can't work and we haven't the finances for a home. Please do a video on living at home as an adult... I understand all your feelings and share them. I don't mind your "sad" videos because they are REAL. That's what's missing on RUclips and I enjoy your genuine talk. I hope to talk to you more...
Never feel bad the worst illnesses are often unseen I worked a year in a part time job to have to give it up when my fibromyalgia and rheumatoid issues got too much and was off for a month with severe pain it's nice to know others understand how we feel so tired all the time pretty much even my mum just says I'm lazy and won't have a future if I can't work like I chose the illness! Hope you have a better day :)
I'm not F***ing ashamed! I am indignant and enraged that I have had CFIDS for 30 years and the CDS dropped the ball on this in 85 in Incline Village and I still encounter viscous discrimination. Why should anyone be ashamed of being Sick? No offense to you.... but the hell with that. My question would be how do I deal with my Anger of consisting encountering Ass Hat doctors who judge me as being Lazy? Oh yeah... I'm a man with CFIDS.
what is that Dt Cheney treating people with nowadays? Something about heart and liver extracts I read somewhere which have glutathione in them I think. Has he nailed how to up flip the HPA axis yet?
Almost everything you mentioned here is my sister's life! I'll be directing her to watch this..its hard as I am the person with the relationship, house, stable job and gym bunny..She is three years older, living with our parents and on long term sick from a job she loved. 100% relate xxx
Oh god I relate so hard to this. I'm 30 and have to live at home and can't work part or full time. It's so embarrassing and the shame is so bad I don't even want to see people as no one understands. I wish I didn't feel this way. I really admire you for speaking out!
Sorry to hear that you are not feeling the best. Although having CFS does suck, there are positives that can come out of it. For example, having limited energy means that you are more likely to focus on things which you are really passionate about, such as your RUclips channel and your close relationships. Going through hard times also makes people more empathetic and understanding, which is a great trait to have! Also, you are beautiful and should not underestimate yourself! But if you can find the money, definitely join a yoga class because it is such a healing form of exercise, both emotionally and physically. You are also likely to meet other like minded people there, in the same position as you because yoga does seem to attract people recovering from trauma or illness. P.s. Love you channel! :)
I know. It's scary to think where I'd be if I didn't have their roof over my head. Thinking of you. That must be very tough, I hope you have some support around you x
I live with my brother, but family and friends don't really understand. Currently signed off work for two weeks by my doctor, the first time in seven years of having CFS that I've allowed her to do so. I'd had enough of working feeling unwell every day. I've had three girlfriends while I've been ill, but all of the relationships have ended due to my illness.
It sucks to not have help. My little girl had to go live with her father. I'm so broke now. This creates tons of guilt & shame. I feel terrible that my children have me for a mom. They deserve better.
Thankyou so much for making this video. I also have CFS and watching you talk was like watching myself, its sad but comforting to see I'm not alone with feelings of shame and disappointment.
Thanks Sophie for this open and honest video. I'm 21 and currently housebound with CFS and relate much of what you spoke of. As someone like yourself with large ambitions, it's shameful at times! You mentioned topics to talk about. I'd be interested to hear what you do around brain fog. That seems to hold me back from doing any creative or higher-level thinking for more than 10 minutes. Awesome work on pursuing creating content on youtube. A youtube I follow that you may take some motive from is MKBHD (ruclips.net/user/marquesbrownlee) Although it sounds like your quite driven nevertheless.....The amount of videos it took him to reach 100 subscribers was 100 videos. He now was 3.8+ subscribers and 500m channel views after 855 videos! Wishing you well. Josh
This video hit the nail right on the head on all the health issues I suffer with. I'm always being asked how I get money so I don't buy things when I'm around them! I've drifted from almost all my friends because I forget to reply to them because I suffer with insomnia and am so drowsy I find functioning as a human a bit weird. People are always asking what's wrong and I never know what to tell them because I can't even understand myself at the moment. Thank You for this video I can't really offer any cliché advice because I'm in a similar boat. Xxx
+Maia Champion I feel like I hardly socialise these days - a proper hermit! Can't even keep up Whatsapp relationships! Sorry you are finding the same thing, I'm sure we will be out of the woods at some point. Hope you have got some mates that stick with you and understand your situation a bit more! xx
Thanks so much for talking about this, everything you have said is exactly how I have been feeling lately! In fact I think probably the hardest part of having a chronic illness is that other people don't really understand it, & you don't want to have to mention it constantly for other people to understand when there might be certain things you're unable to do now..sending love xxx
Sophie, thank you so much. Of course I'm not happy that anyone else is experiencing this, but I admit, it's so nice to not feel alone. Our symptoms and lifestyles are fairly similar and when you speak of shame, and feeling pressure to explain, having to sacrifice a large part of your social life and but feeling anxiety when you can participate. You sound so much like me as you beat yourself up wondering what people think of you and worse, how you see yourself. I was happy, independent, had a great career, was extremely athletic outdoors and was lucky enough to have a great, adventerous relationship with the most gorgeous guy (inside and out). We were home from a camping trip where we were hiking at altitude for about 8 hrs each day. On Monday I returned to my office and just felt like I might have the flu...I thought it was because I had just really pushed my body during our trip, but by morning- I had a fever of 104 and Bells Palsy(YIKES!). My boyfriend and I had just started looking at apartments together but I still lived alone. I don't remember much of the week and a half that I was alone in my apartment. I do know that I'm lucky to be alive, let alone to have even come this far. Yet, somehow, that's not very comforting when you're life is now gone, you live back at home and feel pathetic, and there seems to be no end in site at all. The "brain fog" or cognitive difficulties that you describe drive me crazy!! And there is such a strange consellation of symptoms, none of which are visible on the outside-so you don't know who believes you and cares, or who just says they do but they actually think you must be lazy or depressed. I will say that progress is being made, medically speaking. I met a new neurologist about six months ago and after doing all the M.S. testing, he gave me a new diagnosis of Autoimmune Post Viral Encephalitis. It's a mouthful, I know. But we've been able to come up with a more effetive treatment plan and something about the name of it makes people suddenly appreciate the seriousness of it. I NEVER want anyone to feel bad for me...but the idea that they mock or don't trust me has been really hard. Thanks again for going these videos! If you have any advice or tips, I'd love to hear them and happily share what I know. I use a seperate, private email for any coorespondance related to this. Feel free to reach out!! adsum1022@gmail.com All the Best!
I am sure you must get this all the time, but your honesty and your vulnerability is so incredibly inspiring and empowering. You are truly such a wonderful human being, I wish you all the best. Also, for what it's worth - keep in mind the positive impact that you have on people and the courage that you instil in them to keep going despite all obstacles we face xx
+kikiloves14 Aw that's so lovely to say. I can't do much to help, but I'm glad being open about it is doing something positive. Hope you're doing ok at the moment. lots of love xx
Oh sugar. You are so brave for making this video. How I wish I could swing by, pick you up and go out for tea or a walk and a chat. I feel ya on a lot of those things. Although I don't live at home I deal with major depression and low self esteem. And some other things that involve my relationship that wear on me greatly. I also deal with chronic pain in addition to CFS. So I deal with a lot of physical limitations and the guilt that comes with that. Guilt for feeling like my family has to deal with that and the depressing part where I think about all the things I would love to do if it wasn't' for my chronic neck and back pain and the daily headaches. I could work out more and feel better about my body and be stronger, I could ski with the kids, I could run with my friends or go to the gym and take a class with my best friend or the other moms from school. I could carry heavy shit without suffering the next day and my family wouldn't have to deal with my extreme pain episodes.
I was a single mom from before I had my daughter til 4 yrs ago{she's almost 15 now} and she had to "help take care of me" a lot through out her life. That's a shitty feeling as a mom sometimes. She never minded it but I carry major guilt about it. Anyway, again thanks for sharing. I can say that it helps me to know that someone else feels some of the same things I do. We often feel like we are the only ones. You've become one of my favorite you tubers and I can say honestly that you inspire me{I plan to start my own channel soon}. Also I think it's ok to live at home. We all have to do what we have to do. We just have to make the best of it. Hang in there. Much luv
Thank you for making this video. I was diagnosed with M.E/SEID and Fibro almost a year ago. It took almost 8 years for the doctors to figure it out, but now learning to live with it is the new challenge. I listen to your podcast and it's nice to know that there are others who go through the same thought processes. Hopes this reaches when your energy is high and and the pain is low.
What a beautiful video, had to stop few times due to how emotional and authentic it is. Again thank you for sharing and giving hope and motivation to everyone struggling with invisible illnesses.
Wow! My cousin suffers from this as well as many other illnesses, and she shared this video with me today. I gotta say, I never understood her reasons for not being herself anymore and after watching this.... it really has opened my eyes!!! Thank you so much for sharing! It can't be easy to do!
thank you so much for such an honest true video on what's it's like. Oh and trust me more than anything your parents will just be wishing you were well nothing to do with being in their house that's not a big deal :) don't forget you always have spoonies for understanding :) xx
Thanks Sophie. I'm doing ok, had some hyperbaric oxygen therapy last year for 6months to get rid of my fibromyalgia pain (it worked been pain free since May 2016!!) however I have just been diagnosed with joint hypermobility syndrome/EDS type 3 and am waiting on a POTs diagnosis. However on a happy note this year is starting well with a local pilates class and I'm more determined than ever to loose a bit of the weight I've put on over the past 4 years of being immobile. How are things your end? Still loving all your videos and chats :) One of the best youtubers if you ask me ;) Oh and happy new year too hun xxx
THANK YOU SO MUCH FOR BEING SO HONEST AND YOU ARE SO VALIDATED TO THOSE OF US WHO SUFFER THIS ...20 YEARS FOR ME AND I SO SO HEAR YOU , HUGE HUGS AND LOVE KAT XO
That last bit talking about watching people your age succeed while you're struggling really resonates with me, I feel that a lot. Especially while I was out of work from illness and living with my parents. I'm super fortunate that my husband and I have managed to have our own place now, thou it's a struggle with two people being mentally and physically disabled to make ends meet. Just, thank you. You really put it into words.
Hi Sophie I also suffer with CFS and have a lot of similar symptoms and characteristics like you I am very driven but stuck in a body that does not want to compromise. In the west we are obsessed with what people do for a living their career and then when we find this out we put them in a box and rate them. When someones asks you what you earn you should tell them that is none of their business because it is none of their business and is very rude and uneducated. When people ask you who you live with this is also none of their business. I also live at home with my father and I am older than you, there is nothing to be ashamed of. We live in a society where we are programmed to believe that we have to have our own house to be successful this is very well marketed by the banks. Success is not measured by your income your job or your living situation. To me we are all living totally different lives and until someone can walk a mile in your shoes then they have no right to judge you. To me success is a personal thing are you a better person than you were yesterday, what do you contribute to the planet and humanity. Success is not what you earn but what you give to others.
Thank you so much for this video Sophie! I have CFS myself and have had it from just after uni all through my 20s and 30s and I am now 40. I have watched everyone around me and my friends get houses, careers, great jobs, relationships, and have families of their own etc...meanwhile I relate to everything in your video. And the older I get, the harder I find the shame of not being a 'proper adult'. Thank you for being so honest and allowing me to hear someone else say all of the things I feel every day!! It means a lot. Hi from Australia :) xx
Hi over there in Aus. Lovely to hear from you. It's so hard isn't it. As you see everyone progress you simultaneously see all your goals, dreams etc disappear or get severely delayed at the very least. Hope you're in an ok phase at the moment, but at the very least have people looking out for you xx
You're extremely creative and strong. I subbed your channel way back because of your original CFS video and since have enjoyed your other vids. RUclips has also been my outlet and is the reason I've kept my sanity. It would be awesome to see your channel catapult to the next level. The thing I've had a hard time grasping after 5 years with CFS is the gap of time I've lost. When you're not well you just want the days to go by until you're finally better. Its and empty hole that is hard to describe. I'm not friends with anyone anymore and the one thing I couldn't handle anymore, was the judging. I feel like I've been elevated to another level of humanity, depth and perception. Empty talk doesn't satisfy me and having to FRONT around others is just too exhausting. Spend the time you have with those who love, support and do not judge you. Wish you all the best and keep doing what you're doing. That's a great idea for a video....many people would appreciate it and many I think are too ashamed to talk about it (living with the parents). Being dealt a shit hand is not anyone's fault. You can do everything picture perfect and have it all fall apart (my life lol). Do you have an online blog about your interests? It would go very well with your channel.
Your videos are amazing and you're helping to raise awareness for other people who feel alone and feel guilty. You shouldn't feel shame - ME / CFS is a totally misunderstood illness I'm 27 and feel like a 15 year old when I have to constantly explain myself to people. Keep smiling. X
+whatJloves I'm a bit older, so the fact I'm so behind in many expects of my life really gets me down. But you are right it's not mine or any of our faults. We just gotta do our best with the sitation we've been handed. Sending lots of love xx
Yes, I'm older than you but in exactly the same situation. I also get embarrassed when I have to say I live with my parents (I had to move back in 11 years ago when M.E hit).
Hi Soph :) I understand your situation so much, I have quite severe depression and get tired with that and am in a similar situation living with my mum as I cant afford a place of my own. I used to get really down about it as I did live on my own for a while but due to working part time jobs and trying to make something of myself as an artist have been here for around 4/5 years now. Thank you for your honesty, I remember at uni you struggled with your energy levels and feeling tired so it's good that you have now got a diagnosis for it. Lots of love xx
+J Beck Hi luv, I remember your struggles too when we were at uni. It wasn't an easy time. But hey we're till here, we are still keeping going, and that's something to be proud of eh! I hope you are still making art because you are so talented. Lots of love xx
Yea it's quite a struggle some days but the good days make it worthwhile :) Yes I am painting still, dont think I could stop! I hope you are still creating too xx
Thank you for the video, I relate to this so much! I happen to live with a boyfriend at the moment but aside from that it's so embarrassing to be where I am in life. I gained A LOT of weight from the CFS (I got put put on antibiotics for a year which fatten you, then I had to start taking a med to sleep that put even more weight on) so I'm humiliated about my appearance. I can't very well explain to everyone that I meet that I'm so big because I CAN'T exercise and dieting makes me feel sicker. I'm far too sick to work and I'm only getting by with disability and a little help from my parents. The brain fog can be very humiliating, because unless someone knows me well they'll assume I'm stupid, my memory is practically non-existent. People have actually said nasty things to my face about being dumb because they don't know (of course they're a-holes anyways for pointing it out even if I was just stupid, but still). It's very hard though, so thank you for making me feel less alone.
this is what i go through everyday , you explained it so well. you just start to think , maybe it is me , maybe i am weak or lazy, you just question everything about yourself. iv been dealing with this for 5 years now , and i have to kids , im to tired to do anything with them most of the time. makes me feel like a bad mum and just a weak person. i want to give up but i know i cant leave them alone , so i have to keep fighting and hope to get better one day. anyway thanks for sharing cause at least i know im not alone.
I am nodding away! Thank you for this video Sophie, you are not alone. You are such a genuine, sensitive, interesting and lovely person. A lot of people have cars, jobs, children and mortgages, but most of them don't come close to having your qualities. Lots of love from France xx
+Auhasardisa Oh what a lovely thing to say. You are very very kind. Thanks so much for watching and although I'm not glad you can relate, it's nice to know we are in this together. Lot of Love from England xx
Thank you for this and the comments from everyone, too. I'm going through a bad period of further isolation due to crashing (again). It does help to know that I'm not alone in this.
You're amazing Sophie, very brave of you to spill it all like that, i appreciate it alot. I wish i could just put a picture of my face on yours and show the video to all of my friends so they might have the slightest idea of what we, CFS victims go through... Big ups :)
Thank you, thank you, thank you for doing this. You took every thought and feeling out of my head and put it to words. I have CFS as well as a few other debilitating illness'. Thank you for letting me know I'm not alone, and I'm here to tell you you are not alone either. Stay strong.
Thanks for sharing! My daughter is 26 and was diagnosed with me/cfs when she was 13. I'm so sorry that you all have to live with this unrelenting illness. You somehow bring me comfort though. I guess knowing someone else out there understands and can totally relate.
Thank you so much for this video. Your description of how it feels to live with CFS and the problems it causes in all aspects of every day life was very powerful. I have hope things will get better as the illness is finally starting to be treated with respect. Thanks again
Hi Daniel, Thank you for taking the time to leave a comment, I'm sorry you relate to what I'm talking about though. Baby steps but slowly we're getting closer to people understanding it as a proper illness.xx
Yes and thankfully we have social media as well to help spread the word and connect with others! I can't imagine how bad it would have been 20 years ago having this problem, at least now we can get in touch with fellow patients for support so it's not as lonely. Also medical and research community finally starting to come round, though there is still a lot of pushback saying it is more mental problem and all that rubbish! I feel like we can do a lot however to help our cause and all these fund raising initiatives I see on places like Twitter are really encouraging because people are taking action for themselves and not just waiting for the government to save us which could be a lifetime before that happens! Anyway I'm obviously rambling here but people like you talking openly and with conviction about what you're going through is so important. All our voices added together will push us forward and get us the recognition we deserve. Lots of love :)
i just found this video, thank you so much for making it, I'm almost 23 and couldn't quite finish high school bcs of mental health stuff and I got sick in CFS/me about two years ago so I had to drop the internet courses I was taking to finish school. I don't know when or even if I'll get well enough to start studying again. the future is terrifying. But it's a relief to hear you say out loud the things that I've been feeling and thinking. it's kind of like a weight off my shoulders. I wish you all the best, hopefully a cure is not far away. xx
I empathise with you completely Soph, god, got quite emotional watching this vid! It's such a tough position to be in, when people don't entirely understand your illness and they're all out doing the stuff you so wish you could do. I'm finding that aspect really difficult at the moment. You're definitely not alone with that though, I completely understand how difficult it is. Hope you have as good a week as you can. Sending you a virtual hug. xx
Wow I haven’t been able to relate to someone so much as much as coming across your CFS videos. Thank you so much for sharing! Honestly I slowed down / realised something wasn’t right about 2 years ago so I guess the timing is great because of what I’ve experienced over the last 2 years
Sophie, A wise and wonderful lady once told me... ' The first rule of mental health is to think well of yourself'. I never forgot it. Just know that you are not your circumstances. I hope things have improved for you in terms of your health etc . I have CFS so I can relate...but the key is not to compare yourself with others. When you find yourself starting to do so, say to yourself...I am strong...only strong people can get through what I go through. And know that good parents only want the best for you.
Oh hon, your so sweet, and I really appreciate your honesty. I just found you. I too have ME/CFC, along with hEDS, MCAS & POTS. It's interesting to see how this illness effects all of us so differently. I do have a home (once again, after losing our home at the beginning of my illness), and a husband and a child. And though I am so in love with these people God has given me and our new home, I often think how much easier a life with less responsibilities would be. So I appreciate you sharing what the heart breaks of the other side of the coin are. It's all just hard for us, isn't it. God bless you dear.
be glad that you have your parents. I have had CFS for 20 years. I have no one and I am homeless. it is at time unbearable. you are smart and very pretty, hang in there!
You are beautiful, creative and seem like a lovely person to be around. You deserve the best and we are all rooting for you. I'm sure things are going to change, please continue RUclips. It would be such a shame for you not to pursue it. I love your channel and wish the best for you X
+Elle Roxy Thanks for being so supportive. You guys really make it all worthwhile. I actually talk to you all more than my actual friends these days! When I'm feeling low I will remember your words xx
I relate so much. When you said about explaining the illness but not wanting to sound like somebody without ambition, that’s something I really struggle with. Ironically enough I’ve found setting up my YT channel has given me something to stand behind in that way, although it’s based on me being ill! I’m sorry to see you upset- I think you’re totally right, like IS about adapting, and you’re doing really well xxx
Bless you, so relatable and really good to be able to hear you speak about this. I also agree with so much of what you say about how others perceive us or want to know how we can afford things etc. I think it's important to keep it real and you are a huge inpsiration Sophie and I am always so grateful for our chats - Thank you xxx
Just found your vlogs and subbed immediately. I have been ill with M.E. for longer than you want to know. I enjoy hearing others' stories and find you quite inspirational. Best of luck catching fire with your videos!
+Dawn Bennink Thanks Dawn. So nice to hear from new subscribers. So sorry it's illness that has brought you to my channel. But it's nice if we can all help eachother out and feel supported by eachothers stories. Hope you're doing ok x
What an interesting video, thanks Sophie! My friend has CFS, so this was a very insightful perspective into her struggles. P.S. You will be successful on RUclips, it will just take a bit of time getting there, and you don't have to tell anyone about your earnings (people who ask questions like that are so rude!).
+silentscreams1988 Hope it will help you offer her some comforting words. Thanks for your belief in me...and I thnk you're right about the earnings thing, it's really none of their business!xx
Sophie Eggleton She cancels our plans a lot, which is a little bit frustrating for me, but after watching your video I feel like I can understand her reasons better now. I've now kept things open-ended, so if she can manage meeting up, then I'll make myself available for her. I'm not a ''youtuber'' - but 3 people have asked me what I earn in my life, and my response is always the same ''That's none of your business, you cheeky bugger''. Keep making your great videos :-) xx
Life is a struggle everyday isn’t it , I have the same illness and it’s affected my life beyond recognition but life goes on doesn’t it we are warriors bless you xxx
Hi Sophie, thankyou for your v good and so true video. A 30 year struggle for me after the Hepatitis B vaccine as a health care worker in 1980's. On bedrest as I write and hope things improve for you. Take care.
I'm glad you mentioned the nosey parker questions about money. I don't care how things have changed, that's still rude. I just try to deflect, but if people persist, I find what works is to just look them right in the eye, politely shocked, and say "why would you ask me that?" All but the hardcore busybodies get the message. And for the rest, I don't feel bad about blowing them off. Anyone that rude doesn't deserve my attention. But, like you, I can't help feeling a touch of shame about my financial dependence, in my case on my husband.
I am in the same boat. I am older than you and have been sick since 2010. I don’t want to be living with my parents but it is where I am right now. I am thankful to have such a good family and home to live in though. I do get angry still about this being my life now, it is depressing despite having a few blessings. The guilt and shame of it all is a horrible aspect too. Ugh I hate not being able to have a social life and that I cannot go out and dance or stand for any length of time anymore. Just being out of the house for too long running an errand is too much these days. I can’t believe how many of us are affected with this and nobody seems concerned. There is still less than 8 million a year spent to figure this out. It affects people of ALL ages not just end of life like Alzheimer’s does. At least they got to live their life before being ill, we just seem doomed! I would rather have cancer, at least there are treatments and the possibility of some hope! Sad...sad sad... I have a college degree now and can’t use it, what a waste. I feel I have no purpose and that is depressing.
I've just found your channel. I don't know what your situation is now but you have nothing to be ashamed of. You are doing a RUclips channel and that is amazing considering the struggles you're going through. In fact it would be impressive even if you weren't struggling. I can't work due to ME either and nothing I've tried so far to earn money or work towards earning money has worked out as it all just exhausts me. I've been trying for years and am impressed at what you have achieved. I'd love to start my own RUclips channel but I am worried about nasty comments as I have quite low self-esteem at the moment.
Hi Charlotte. Thanks for leaving your lovely comment. I don't do RUclips too much anymore (but do find me on instagram @sophieeggleton and @athomewithegg). The internet is great for connecting you to likeminded people who understand what you're going through, but it's a tough space too and a thick skin is required (which I was never that great at having). I had a rough period of trolling which made me less inclined to want to post sadly. On the work side it's so hard to get to a point where you have the balance right. I find it tricky because I'm not well enough to work full or part time, but I'm also not sick enough to get any financial help. So freelance is the only answer, but then to be successful as a freelancer you have to push yourself/network/pitch which I don't have the energy to do meaning I'm not really making enough. It's hard, so I completely sympathise with you. Sending lots of love and I hope you find some solutions soon xx
@@SophieEggleton sorry to hear this. I don't have a thick skin but maybe I can develop one. I'm most concerned of people judging the way I look as I am not as attractive as you and other RUclipsrs. I guess they will but maybe I could cope with it. If you aren't well well enough to work part time you probably are entitled to ESA or the equivalent UC. Thanks for your thoughtful reply and I hope to see you more on RUclips. xx
You are so strong Sophie. I admire you and relate to you on this. Thank you for talking to us about it and sharing with us so much . I wish you good things and a good life :)
Hi Sophie, This is the first video of yours that I've seen and I found it very interesting. I think I'll make a reply video when I get a chance. I'm 24 and also have CFS, I was diagnosed 6 years ago. I find it interesting to be able to connect with so many people online who have different experiences of this condition. I live in the UK and also work at Reading Festival, it would be great to meet up there if you're there this year :) Sending you good health wishes. Katherine xx
I. am. SO. over the moon right now! It warms my heart that you posted this. I have been in my house unable to move for almost 2 weeks now and your videos have been keeping me company and maintaining my perspective on life. I could comment on so many of your videos, but I wanted to keep a lid on the commenting out of respect for your ability to keep up with all of us... And to not come across as a maniac haha. I am subscribed indefinitely. Never the less I've been at this place in my life for a long time now and have a ton of experience on the matter. And in looking at the comments below there's this crazy feeling that you are reading our minds. Keep it up and keep on taking care of yourself!
Wow! It's incredible I completely forgot just how far I have come until re-reading this post. I am doing great. I have gone from totally bed bound just 6 months ago, to now playing the mountains, making new friends, and learning to backcountry ski! I really made some smart moves in medicine this past year. And it turns out professional counselling was way more helpful than what I knew from my prior experiences. The wrong councillors made it so much worse, but right one helped me notice how all the stress wears me down. It is by far my greatest effort at the moment. And the rewards are great. I may wear most of the same clothes and live in the same city, but I grew more this year than any other. Sometimes I forget that. Thanks for asking!
Sending you a big hug thank you so much for this video makes me feel so less alone in this I feel this exact way yes I have 2 girls and a place and partner and recently my eldest daughters been diagnosed with M.E too but again it's the job thing I want to be able to work and I'm constantly comparing myself to others. I even did the lightening process and the friends I had that had M.E did it also and there now completely fine yet I'm not I feel such great anger at that thinking well why are they fine yet I'm still not? xxx
+Caz Pudney Its so frustrating because we have the same ambition and drive, but lack the ability or opportunity to use it. So sorry your eldest has to deal with this too, but it must be helpful for both of you that you have someone so close to you that get's it. Not much of a silver lining I know, but I'm sure you inspire her to keep going. I don't know well enough how the lightening process works to make an intelligent suggestion, but is it something you can try again? I can completely understand your frustration, particularly as you've had to see it work for others. Sending you a massive hug xx
+Caz Pudney Do you feel like there's any correlation genetically where you could have passed the susceptibility to the disease to your offspring? Please do not blame yourself for a moment. There is literally no medical data on this anywhere and i've long been wondering if i'd ever be willing to risk having children of my own someday. I wish you well!
I tried working part time after my symptoms started. Barely lasted a year and a half. Couldn't explain what was really going on to the bosses. I was always working full time plus volunteering at my kid's school, going out. Always looking forward to things. My husband lost his job shortly before I lost mine. Our income is 1/3 of what it was. We are now in the same living situation as you. I totally agree about people asking about money!!! IT IS RUDE!!! This is how my "friend" got upset with me the other day and started in on me. She wanted me to go on vacation with her. I was always up for that but I told her there's no way I can justify it now. She started on a 1/2 hour lecture with all the usual things that we all hear. As far as forgetting. I do it all the time. I didn't show up for a meeting at my daughter's school yesterday. My brutally honest teenager told them that I was probably sleeping at 1 in the afternoon. TMI! People have no idea what kind of energy it takes to just look well. My husband jokingly has some names for what I look like after a few days of not bothering to shower or comb my hair so I feel you! I agree. The collateral damage is probably the worst. The guilt, shame, feeling misunderstood. Keep up what you're doing. Thank you so much!
I just started my channel on NYE while i had to stay at home. I am sick of hiding and i posted the video without makeup on the couch and crying talking about this double life I feel i lead. it's sooo hard b/c i want to get out to get nourishment on a social level, but then meet people who become friends who i can't follow thru with and meet guys who are charmed by me while out...but then there is this terrible secret i have. i can't maintain. and decided to just *uck it. show the world me. you may be able to relate to some based on some of what you say in your videos. I was about your level at your age (early 30s late 20s?) i'm mid 40s now and it's mod/severe now. Honestly, you say you don't want to repeat yourself, but not enough people are speaking. we aren't getting the help. we have been shamed into silence. no more. xo
Susan Marshall so glad you have started a channel. It will be good for you to vent but also help continue to spread the word about the illness and increase awareness. You may find it helps people in your life understand you and what you deal with on a daily basis. I really hope you get something out of it - at the very least you will likely find that people dealing with similar issues with reach out to you and be a comfort. Sending lots of love
That's my intent. to spread the word. too many people suffering so badly. it's terribly isolating. Check them out, you may relate! i've been at this over 20 yrs. and have tried everything. i'm going to be making more and more as energy allows and talk about my journey but also educate about this illness as I've learned a lot over the years. i'm not tech savvy but am trying. need to be more succinct too...love to you too.
I know that shame because I have dealt with it seemingly all my life. I have other illness but people think I look normal and bosses have misunderstood me.Family has judged me and friends may be ahead of you.Hard to hold a job if your body always changes.The cognitive issues were the last to admit to myself because I thought it meant I was stupid to not remember things and to misunderstand so much so often and be somewhat clueless.Yep, it's real and a huge part of our illnesses involve the stress of other's treatment and opinions.Be encouraged everyone!
I can identify so much with what you talked about in this video. I have just moved back in with my parents at the age of 30. I owned a house with my boyfriend. But we broke up so we had to sell it. I have M.E and although I can work part time I don't earn enough to support myself. My ex boyf was supporting me in our house and now my parents are supporting me. I feel a great deal of shame that I can't support myself and my parents still have to look after me. It's very frustrating that you can explain about your illness to people but they don't understand and also seem to forget you have it. I don't want to be one of those people who is always going 'yeah but I have ME'. Sadly it seems it's necessary to. My biggest source of embarrassment is the brain fog. It's the most obvious symptom of my illness and I feel so stupid when I forget what I'm saying or can't speak properly. I used to be so switched on but now I'm a bumbling fool.
Jemma H brain fog has been debilitating for me. I hold onto hope that it will get better through diet and exercise. I wish you all the best on your journey.
I can relate to your story and the social media comparisons that cause emotions you cant control. Id love to talk with you..im here for you. I have cfs and eds type 3 also.
besides living with parents / i have my own pad. I am exactly like this. everything you saying describes me. great video. thank you. wishing you the best.
I am new to your channel & so this is the only video I've seen of yours just yet, but I'm really hoping I'll see that things feel much better for this. I did share many of these feelings you've shared ❤
Your very ill but your beautiful inside out! You may live with your parents but all they want is the best for their child and YOU ARE doing your BEST at the moment, yes they want you to be healthy and happy ofcourse that's a parents privilege! And LASTLY BE PROUD OF WHAT YOUR DOING IT TAKES ENERGY (you don't have) and your making the best of a shite situation NOBODY CAN ASK MORE OF YOU AND YOUR FRIENDS NEED A WAKE UP CALL YOUR VERY SICK AND YOU LOVE THEM THATS WHY YOU CHOOSE TO SPEND THE LITTLE ENERGY YOU HAVE TO SPEND TIME WITH THEM!!!!! Next time someone asks what you do maybe say "oh I advocate for the chronically ill and assist in educating their loved ones on how to help them!!!!" If they ask what you earn at that point your answer is "it's a very rewarding position!!" Be proud your showing loads of courage and without sounding like an idiot I THINK YOU ROCK OH! And answer why you live at home " we are a close family and at the moment there is some health issues in the family and it was better for us to be together to support eachother, oh yes it's not easy at times however I am very lucky to have a close family, many don't have that!!!!" Ok now ideas for a fun video hmmmmmmmmm hard one ........ Maybe some role playing where your dressed up with a few props just silly glasses, bow I. Your hair and ask ALL THOSE REDICULOUS THINGS PEOPLE SAY TO US PERHAPS ASKING A CAT OR A CHILD OR A DOG OR A FRIEND WHO WILL KNOW WHAT TO SAY????!!!!! Sorry matey but fun and chronic illness is a hard one SORRY!!! But again BE PROUD OF YOU!!!!!!!!!!! PLEASE WHAT YOUR PUSHING YOURSELF TO DO TAKE LOADS OF COURAGE IN OUR POSITION AND SADLY FOR ME ALL MY FRIENDS ARE GONE NOW SO JUST KEEP DOING WHAT YOU CAN BUT REMEMBER PLEASE BE CAREFUL AND MAKE SURE YOUR NOT PUSHING TO HARD BECAUSE I KNOW I JUST MAY HAVE PUSHED ONE TO MANY TIMES !!!! Ok I am crying now lol (but hey that's what this is about sharing and caring about ourselves and understanding eachother without ALL THAT BLOODY EXPLAINING WHICH, LETS FACE IT, ITS BLOODY AWFUL !!!!!!!!!!!! Health one day, happiness when we are happy love baby steps and may the light shine bright on us all again without it being painful .......... Hugzzzzzz to all (the gal from OZ) muahhhhhh
I don't see it that way. I've managed to move and live alone. Though I'm not sure about my future job situation and money, I'm taking care of myself. I don't have any social life, no friends, but I don't compare myself to others. I just enjoy being alone with myself and the only real problem I still have is money. Otherwise I'm happy and satisfied. I managed to completely get rid of my severe depressions more than 3 years ago. I have been diabetic type 1 since 1994 and now also ME/CFS. But I'm not unhappy, not at all. I love myself and just being alone with myself. I don't feel guilty or ashamed. When it comes to relationships I don't want any at all anyway, only bad experiences, but alone with myself I'm happier than ever. So I don't miss anything actually. I don't get why people are running after having relationships. I've never understood what's good about all this. I only see it negatively, and being alone is the best thing ever. And when it comes to parties I think the same. I've always hated them, and now I actually enjoy having a much better reason not to go to them than just that I don't want to because I hate them.
How does social security disability insurance work for people with ME/CFS in UK? Can you even easily prove you have it if they don't have the tests available to everyone? How much does it pay by the way? I know in the USA it doesn't pay enough for even an efficiency apartment in major populated areas, not to mention other expenses. You have to qualify for it in the USA by working for like 10 years full time first to earn up points. Then if you make a high salary near six figures you can make a maximum of something around $1400 to $1700 a month when you accept disability insurance payments.
I can 100% relate to this video. Im sorry you feel like this too. I was diagnosed with fibromyalgia around a year ago now and i have become socially withdrawn, dont go out and dont want to! Cant work and find it hard to make it to college. My anxiety is through the roof. Its terrible. I have applied to study midwifery at uni but am going to have to withdraw my application as i know i wont be able to cope which is soul destroying! I love your videos and always watch when im feeling down xxx
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](/img/tr.png)
It's so nice to hear someone talk about the shame and struggle to explain. I feel like no matter how many times I explain to friends and family they still don't get it.
Thank you so much for this. I'm approaching nine years of chronic fatigue syndrome and have faced so much judgment and constant negative comments because I haven't been able to hold down a job since the day I fell sick at 17.
It's so tough isn't it. So sorry you've struggled for so long. What i find hardest at my level of it is that I'm not well enough to work, but not sick enough to get financial help either. They need to make sure ever level of the illness is helped accordingly. x
Wow, a lot like myself.
It's so good to see that I'm not alone with all those struggles and insecurities that comes with this disease. It's hard to stay strong when you're in the age (I'm 27) where all your friends working on their careers or marry or getting kids or travel. And you're staying the most of the day in bed because you're too exhausted. Thank you for uploading!
I feel like I'm just about at the end of my rope with this whole thing - no one understands this it - including myself... I'm RH negative (A to be exact) and it seems like a WHOLE lot of RH Negs have this. Yes! Our own island please!!??
Laura Lewis I’m O neg...how did you’d IMD out the connection between ME/CFS and Rh factor?
You are so strong Sophie and the guts to post this. I'm 31 and can empathize with you. Real friends will stay no matter what the situation is.
I have CFS too, and this all rings true to me, and have probably a similar level of CFS as you. I am slightly older than you (I think), but am male, and can tell you that it is possible to succeed working for yourself, if you just chip away. But basically you have to work at least as double as hard as everyone else, and the mind fog is one of the biggest problems. Having a partner who is well off is another route, but not a route I have taken ! I live in New Zealand, but my parents come from the Surrey area in the UK. One of the major problem is other people judging, and not believing you have a problem, and that you are lazy. Even family members and friends. Maybe that has helped me try to prove that I can succeed. I have even been told by some doctors that they don't even believe in the condition, even though it is a recognized condition these days. Stay strong.
I can relate to all of this, it's isolating being in a world where nobody seems to suffer from this cruel illness around you.
thank you for being so honest. we need more such "open" videos on YT.
+Style The Two it's one of the only things I can do, so I'm going to keep doing that. Thanks for watching and I hope you guys are having a good 2016 xx
Thank you so much for posting this Sophie. It has brought me some comfort to know I'm not completely alone. I was recently diagnosed with ME & Fibromyalgia after a year of losing my job and lots of tests. Everything you said really hit home with me. I rarely see my friends or family due to chronic pain and poor mobility but I have been blessed with the most amazing man who I live with. I'm still struggling to explain to family & friends how I feel as I'm sure you understand exhaustion doesn't quite cut it. My brain fog is also a real struggle so any tips would be much appreciated. Love & hugs from Edinburgh xo 💕
OH MY!! It was like I was watching myself talk on camera! I SO understand EVERYTHING you said!!!!! I wish I was your Pen Pal so we could chat back and forth by e-mail. I also have CFS along with a syndrome called POTS/Dysautonomia (which it sounds like you may have - symptoms: can't stand long/fainting/fatigue/tachycardia/gastro symptoms/brain fog etc., please research). Anyhow, I used to enjoy my job as a Nail Technician but had to quit a few years ago due to health. I am almost 35 and my husband and I had to move back in with my parents since I can't work and we haven't the finances for a home. Please do a video on living at home as an adult... I understand all your feelings and share them. I don't mind your "sad" videos because they are REAL. That's what's missing on RUclips and I enjoy your genuine talk. I hope to talk to you more...
Never feel bad the worst illnesses are often unseen I worked a year in a part time job to have to give it up when my fibromyalgia and rheumatoid issues got too much and was off for a month with severe pain it's nice to know others understand how we feel so tired all the time pretty much even my mum just says I'm lazy and won't have a future if I can't work like I chose the illness! Hope you have a better day :)
I'm not F***ing ashamed! I am indignant and enraged that I have had CFIDS for 30 years and the CDS dropped the ball on this in 85 in Incline Village and I still encounter viscous discrimination. Why should anyone be ashamed of being Sick? No offense to you.... but the hell with that. My question would be how do I deal with my Anger of consisting encountering Ass Hat doctors who judge me as being Lazy? Oh yeah... I'm a man with CFIDS.
what is that Dt Cheney treating people with nowadays? Something about heart and liver extracts I read somewhere which have glutathione in them I think. Has he nailed how to up flip the HPA axis yet?
Almost everything you mentioned here is my sister's life! I'll be directing her to watch this..its hard as I am the person with the relationship, house, stable job and gym bunny..She is three years older, living with our parents and on long term sick from a job she loved. 100% relate xxx
+Ruth Elizabeth Send her my love. Sounds like she's got a pretty great little sis, looking out for her though. x
Oh god I relate so hard to this. I'm 30 and have to live at home and can't work part or full time. It's so embarrassing and the shame is so bad I don't even want to see people as no one understands. I wish I didn't feel this way. I really admire you for speaking out!
Sorry to hear that you are not feeling the best. Although having CFS does suck, there are positives that can come out of it. For example, having limited energy means that you are more likely to focus on things which you are really passionate about, such as your RUclips channel and your close relationships. Going through hard times also makes people more empathetic and understanding, which is a great trait to have!
Also, you are beautiful and should not underestimate yourself! But if you can find the money, definitely join a yoga class because it is such a healing form of exercise, both emotionally and physically. You are also likely to meet other like minded people there, in the same position as you because yoga does seem to attract people recovering from trauma or illness.
P.s. Love you channel! :)
Lucky that you have the support of your parents....I'm dealing with CFS while working full time and paying a mortgage 😕
I know. It's scary to think where I'd be if I didn't have their roof over my head. Thinking of you. That must be very tough, I hope you have some support around you x
I live with my brother, but family and friends don't really understand. Currently signed off work for two weeks by my doctor, the first time in seven years of having CFS that I've allowed her to do so. I'd had enough of working feeling unwell every day. I've had three girlfriends while I've been ill, but all of the relationships have ended due to my illness.
You are very strong xxx
It sucks to not have help. My little girl had to go live with her father. I'm so broke now. This creates tons of guilt & shame. I feel terrible that my children have me for a mom. They deserve better.
Thankyou so much for making this video. I also have CFS and watching you talk was like watching myself, its sad but comforting to see I'm not alone with feelings of shame and disappointment.
Thanks Sophie for this open and honest video. I'm 21 and currently housebound with CFS and relate much of what you spoke of. As someone like yourself with large ambitions, it's shameful at times!
You mentioned topics to talk about. I'd be interested to hear what you do around brain fog. That seems to hold me back from doing any creative or higher-level thinking for more than 10 minutes.
Awesome work on pursuing creating content on youtube. A youtube I follow that you may take some motive from is MKBHD (ruclips.net/user/marquesbrownlee) Although it sounds like your quite driven nevertheless.....The amount of videos it took him to reach 100 subscribers was 100 videos. He now was 3.8+ subscribers and 500m channel views after 855 videos!
Wishing you well.
Josh
This video hit the nail right on the head on all the health issues I suffer with. I'm always being asked how I get money so I don't buy things when I'm around them! I've drifted from almost all my friends because I forget to reply to them because I suffer with insomnia and am so drowsy I find functioning as a human a bit weird. People are always asking what's wrong and I never know what to tell them because I can't even understand myself at the moment. Thank You for this video I can't really offer any cliché advice because I'm in a similar boat. Xxx
+Maia Champion I feel like I hardly socialise these days - a proper hermit! Can't even keep up Whatsapp relationships! Sorry you are finding the same thing, I'm sure we will be out of the woods at some point. Hope you have got some mates that stick with you and understand your situation a bit more! xx
Thanks so much for talking about this, everything you have said is exactly how I have been feeling lately! In fact I think probably the hardest part of having a chronic illness is that other people don't really understand it, & you don't want to have to mention it constantly for other people to understand when there might be certain things you're unable to do now..sending love xxx
Perfectly explained. Us with illnesses all go through the same thoughts, worries and frustrations. Nice to know we are not alone. Thanks Sophie.
+Nigel James Hope you're doing ok Nigel! x
Sophie, thank you so much. Of course I'm not happy that anyone else is experiencing this, but I admit, it's so nice to not feel alone. Our symptoms and lifestyles are fairly similar and when you speak of shame, and feeling pressure to explain, having to sacrifice a large part of your social life and but feeling anxiety when you can participate. You sound so much like me as you beat yourself up wondering what people think of you and worse, how you see yourself. I was happy, independent, had a great career, was extremely athletic outdoors and was lucky enough to have a great, adventerous relationship with the most gorgeous guy (inside and out). We were home from a camping trip where we were hiking at altitude for about 8 hrs each day. On Monday I returned to my office and just felt like I might have the flu...I thought it was because I had just really pushed my body during our trip, but by morning- I had a fever of 104 and Bells Palsy(YIKES!). My boyfriend and I had just started looking at apartments together but I still lived alone. I don't remember much of the week and a half that I was alone in my apartment. I do know that I'm lucky to be alive, let alone to have even come this far. Yet, somehow, that's not very comforting when you're life is now gone, you live back at home and feel pathetic, and there seems to be no end in site at all. The "brain fog" or cognitive difficulties that you describe drive me crazy!! And there is such a strange consellation of symptoms, none of which are visible on the outside-so you don't know who believes you and cares, or who just says they do but they actually think you must be lazy or depressed. I will say that progress is being made, medically speaking. I met a new neurologist about six months ago and after doing all the M.S. testing, he gave me a new diagnosis of Autoimmune Post Viral Encephalitis.
It's a mouthful, I know. But we've been able to come up with a more effetive treatment plan and something about the name of it makes people suddenly appreciate the seriousness of it. I NEVER want anyone to feel bad for me...but the idea that they mock or don't trust me has been really hard.
Thanks again for going these videos! If you have any advice or tips, I'd love to hear them and happily share what I know. I use a seperate, private email for any coorespondance related to this. Feel free to reach out!! adsum1022@gmail.com All the Best!
I am sure you must get this all the time, but your honesty and your vulnerability is so incredibly inspiring and empowering. You are truly such a wonderful human being, I wish you all the best. Also, for what it's worth - keep in mind the positive impact that you have on people and the courage that you instil in them to keep going despite all obstacles we face xx
+kikiloves14 Aw that's so lovely to say. I can't do much to help, but I'm glad being open about it is doing something positive. Hope you're doing ok at the moment. lots of love xx
Oh sugar. You are so brave for making this video. How I wish I could swing by, pick you up and go out for tea or a walk and a chat. I feel ya on a lot of those things. Although I don't live at home I deal with major depression and low self esteem. And some other things that involve my relationship that wear on me greatly. I also deal with chronic pain in addition to CFS. So I deal with a lot of physical limitations and the guilt that comes with that. Guilt for feeling like my family has to deal with that and the depressing part where I think about all the things I would love to do if it wasn't' for my chronic neck and back pain and the daily headaches. I could work out more and feel better about my body and be stronger, I could ski with the kids, I could run with my friends or go to the gym and take a class with my best friend or the other moms from school. I could carry heavy shit without suffering the next day and my family wouldn't have to deal with my extreme pain episodes.
I was a single mom from before I had my daughter til 4 yrs ago{she's almost 15 now} and she had to "help take care of me" a lot through out her life. That's a shitty feeling as a mom sometimes. She never minded it but I carry major guilt about it.
Anyway, again thanks for sharing. I can say that it helps me to know that someone else feels some of the same things I do. We often feel like we are the only ones. You've become one of my favorite you tubers and I can say honestly that you inspire me{I plan to start my own channel soon}.
Also I think it's ok to live at home. We all have to do what we have to do. We just have to make the best of it. Hang in there. Much luv
Thank you for making this video. I was diagnosed with M.E/SEID and Fibro almost a year ago. It took almost 8 years for the doctors to figure it out, but now learning to live with it is the new challenge. I listen to your podcast and it's nice to know that there are others who go through the same thought processes. Hopes this reaches when your energy is high and and the pain is low.
What is the podcast called
What a beautiful video, had to stop few times due to how emotional and authentic it is. Again thank you for sharing and giving hope and motivation to everyone struggling with invisible illnesses.
Thanks so much for your support. You recent comments have really lifted my spirits during a tough week xx
Wow! My cousin suffers from this as well as many other illnesses, and she shared this video with me today. I gotta say, I never understood her reasons for not being herself anymore and after watching this.... it really has opened my eyes!!! Thank you so much for sharing! It can't be easy to do!
thank you so much for such an honest true video on what's it's like. Oh and trust me more than anything your parents will just be wishing you were well nothing to do with being in their house that's not a big deal :) don't forget you always have spoonies for understanding :) xx
Shona Smith how are you doing these days? Hope you're ok and happy new year xx
Thanks Sophie. I'm doing ok, had some hyperbaric oxygen therapy last year for 6months to get rid of my fibromyalgia pain (it worked been pain free since May 2016!!) however I have just been diagnosed with joint hypermobility syndrome/EDS type 3 and am waiting on a POTs diagnosis. However on a happy note this year is starting well with a local pilates class and I'm more determined than ever to loose a bit of the weight I've put on over the past 4 years of being immobile.
How are things your end? Still loving all your videos and chats :) One of the best youtubers if you ask me ;) Oh and happy new year too hun xxx
THANK YOU SO MUCH FOR BEING SO HONEST AND YOU ARE SO VALIDATED TO THOSE OF US WHO SUFFER THIS ...20 YEARS FOR ME AND I SO SO HEAR YOU , HUGE HUGS AND LOVE KAT XO
That last bit talking about watching people your age succeed while you're struggling really resonates with me, I feel that a lot. Especially while I was out of work from illness and living with my parents. I'm super fortunate that my husband and I have managed to have our own place now, thou it's a struggle with two people being mentally and physically disabled to make ends meet. Just, thank you. You really put it into words.
Lee T. So pleased you've managed to move into a place together it gives me hope that one day I will too! Take care and sending lots of love xx
Hi Sophie I also suffer with CFS and have a lot of similar symptoms and characteristics like you I am very driven but stuck in a body that does not want to compromise. In the west we are obsessed with what people do for a living their career and then when we find this out we put them in a box and rate them. When someones asks you what you earn you should tell them that is none of their business because it is none of their business and is very rude and uneducated. When people ask you who you live with this is also none of their business. I also live at home with my father and I am older than you, there is nothing to be ashamed of. We live in a society where we are programmed to believe that we have to have our own house to be successful this is very well marketed by the banks. Success is not measured by your income your job or your living situation. To me we are all living totally different lives and until someone can walk a mile in your shoes then they have no right to judge you. To me success is a personal thing are you a better person than you were yesterday, what do you contribute to the planet and humanity. Success is not what you earn but what you give to others.
Thank you so much for this video Sophie! I have CFS myself and have had it from just after uni all through my 20s and 30s and I am now 40. I have watched everyone around me and my friends get houses, careers, great jobs, relationships, and have families of their own etc...meanwhile I relate to everything in your video. And the older I get, the harder I find the shame of not being a 'proper adult'. Thank you for being so honest and allowing me to hear someone else say all of the things I feel every day!! It means a lot. Hi from Australia :) xx
Hi over there in Aus. Lovely to hear from you. It's so hard isn't it. As you see everyone progress you simultaneously see all your goals, dreams etc disappear or get severely delayed at the very least. Hope you're in an ok phase at the moment, but at the very least have people looking out for you xx
thank for sharing , for being brave💖I cried watching this video.I feel the same as you in so many ways
You're extremely creative and strong. I subbed your channel way back because of your original CFS video and since have enjoyed your other vids. RUclips has also been my outlet and is the reason I've kept my sanity. It would be awesome to see your channel catapult to the next level. The thing I've had a hard time grasping after 5 years with CFS is the gap of time I've lost. When you're not well you just want the days to go by until you're finally better. Its and empty hole that is hard to describe. I'm not friends with anyone anymore and the one thing I couldn't handle anymore, was the judging. I feel like I've been elevated to another level of humanity, depth and perception. Empty talk doesn't satisfy me and having to FRONT around others is just too exhausting. Spend the time you have with those who love, support and do not judge you. Wish you all the best and keep doing what you're doing. That's a great idea for a video....many people would appreciate it and many I think are too ashamed to talk about it (living with the parents). Being dealt a shit hand is not anyone's fault. You can do everything picture perfect and have it all fall apart (my life lol). Do you have an online blog about your interests? It would go very well with your channel.
I can't tell you how much these videos mean to me. Thank you so much for being so brave to talk talk about these things. Much much love you you!
+Miriam Vedvik Aw Miriam, I don't have the power to do much, but I'm glad I can do this if it helps you xx lots of love
You have to live for yourself, don't worry about what others think....your a good person with a beautiful soul.
+Lurganista I will definitely try. Must care less about what people think...and ongoing quest for sure xx
Your videos are amazing and you're helping to raise awareness for other people who feel alone and feel guilty.
You shouldn't feel shame - ME / CFS is a totally misunderstood illness I'm 27 and feel like a 15 year old when I have to constantly explain myself to people.
Keep smiling. X
+whatJloves I'm a bit older, so the fact I'm so behind in many expects of my life really gets me down. But you are right it's not mine or any of our faults. We just gotta do our best with the sitation we've been handed. Sending lots of love xx
Yes, I'm older than you but in exactly the same situation. I also get embarrassed when I have to say I live with my parents (I had to move back in 11 years ago when M.E hit).
Hi Soph :)
I understand your situation so much, I have quite severe depression and get tired with that and am in a similar situation living with my mum as I cant afford a place of my own. I used to get really down about it as I did live on my own for a while but due to working part time jobs and trying to make something of myself as an artist have been here for around 4/5 years now.
Thank you for your honesty, I remember at uni you struggled with your energy levels and feeling tired so it's good that you have now got a diagnosis for it. Lots of love xx
+J Beck Hi luv, I remember your struggles too when we were at uni. It wasn't an easy time. But hey we're till here, we are still keeping going, and that's something to be proud of eh! I hope you are still making art because you are so talented. Lots of love xx
Yea it's quite a struggle some days but the good days make it worthwhile :)
Yes I am painting still, dont think I could stop! I hope you are still creating too xx
Thank you for the video, I relate to this so much! I happen to live with a boyfriend at the moment but aside from that it's so embarrassing to be where I am in life. I gained A LOT of weight from the CFS (I got put put on antibiotics for a year which fatten you, then I had to start taking a med to sleep that put even more weight on) so I'm humiliated about my appearance. I can't very well explain to everyone that I meet that I'm so big because I CAN'T exercise and dieting makes me feel sicker. I'm far too sick to work and I'm only getting by with disability and a little help from my parents. The brain fog can be very humiliating, because unless someone knows me well they'll assume I'm stupid, my memory is practically non-existent. People have actually said nasty things to my face about being dumb because they don't know (of course they're a-holes anyways for pointing it out even if I was just stupid, but still). It's very hard though, so thank you for making me feel less alone.
this is what i go through everyday , you explained it so well. you just start to think , maybe it is me , maybe i am weak or lazy, you just question everything about yourself. iv been dealing with this for 5 years now , and i have to kids , im to tired to do anything with them most of the time. makes me feel like a bad mum and just a weak person. i want to give up but i know i cant leave them alone , so i have to keep fighting and hope to get better one day. anyway thanks for sharing cause at least i know im not alone.
I am nodding away! Thank you for this video Sophie, you are not alone. You are such a genuine, sensitive, interesting and lovely person. A lot of people have cars, jobs, children and mortgages, but most of them don't come close to having your qualities. Lots of love from France xx
+Auhasardisa Oh what a lovely thing to say. You are very very kind. Thanks so much for watching and although I'm not glad you can relate, it's nice to know we are in this together. Lot of Love from England xx
You should feel proud! you are an inspiration, you're a role model!
this was eye opening.
+Carmel Hermoni mwah xx
Thank you for this and the comments from everyone, too. I'm going through a bad period of further isolation due to crashing (again). It does help to know that I'm not alone in this.
You're amazing Sophie, very brave of you to spill it all like that, i appreciate it alot.
I wish i could just put a picture of my face on yours and show the video to all of my friends so they might have the slightest idea of what we, CFS victims go through... Big ups :)
Thank you, thank you, thank you for doing this. You took every thought and feeling out of my head and put it to words. I have CFS as well as a few other debilitating illness'. Thank you for letting me know I'm not alone, and I'm here to tell you you are not alone either. Stay strong.
Thanks for sharing! My daughter is 26 and was diagnosed with me/cfs when she was 13. I'm so sorry that you all have to live with this unrelenting illness. You somehow bring me comfort though. I guess knowing someone else out there understands and can totally relate.
Thank you so much for this video. Your description of how it feels to live with CFS and the problems it causes in all aspects of every day life was very powerful. I have hope things will get better as the illness is finally starting to be treated with respect. Thanks again
Hi Daniel, Thank you for taking the time to leave a comment, I'm sorry you relate to what I'm talking about though. Baby steps but slowly we're getting closer to people understanding it as a proper illness.xx
Yes and thankfully we have social media as well to help spread the word and connect with others! I can't imagine how bad it would have been 20 years ago having this problem, at least now we can get in touch with fellow patients for support so it's not as lonely.
Also medical and research community finally starting to come round, though there is still a lot of pushback saying it is more mental problem and all that rubbish! I feel like we can do a lot however to help our cause and all these fund raising initiatives I see on places like Twitter are really encouraging because people are taking action for themselves and not just waiting for the government to save us which could be a lifetime before that happens!
Anyway I'm obviously rambling here but people like you talking openly and with conviction about what you're going through is so important. All our voices added together will push us forward and get us the recognition we deserve.
Lots of love :)
i just found this video, thank you so much for making it, I'm almost 23 and couldn't quite finish high school bcs of mental health stuff and I got sick in CFS/me about two years ago so I had to drop the internet courses I was taking to finish school. I don't know when or even if I'll get well enough to start studying again. the future is terrifying. But it's a relief to hear you say out loud the things that I've been feeling and thinking. it's kind of like a weight off my shoulders. I wish you all the best, hopefully a cure is not far away. xx
I empathise with you completely Soph, god, got quite emotional watching this vid! It's such a tough position to be in, when people don't entirely understand your illness and they're all out doing the stuff you so wish you could do. I'm finding that aspect really difficult at the moment. You're definitely not alone with that though, I completely understand how difficult it is. Hope you have as good a week as you can. Sending you a virtual hug. xx
You kept it all the way 100. I can relate. Thank you. Lots of love from Jamaica.
Thank you for watching. lots of love from the UK
Wow I haven’t been able to relate to someone so much as much as coming across your CFS videos. Thank you so much for sharing! Honestly I slowed down / realised something wasn’t right about 2 years ago so I guess the timing is great because of what I’ve experienced over the last 2 years
Sophie, A wise and wonderful lady once told me...
' The first rule of mental health is to think well of yourself'. I never forgot it. Just know that you are not your circumstances. I hope things have improved for you in terms of your health etc . I have CFS so I can relate...but the key is not to compare yourself with others. When you find yourself starting to do so, say to yourself...I am strong...only strong people can get through what I go through. And know that good parents only want the best for you.
Oh hon, your so sweet, and I really appreciate your honesty. I just found you. I too have ME/CFC, along with hEDS, MCAS & POTS. It's interesting to see how this illness effects all of us so differently. I do have a home (once again, after losing our home at the beginning of my illness), and a husband and a child. And though I am so in love with these people God has given me and our new home, I often think how much easier a life with less responsibilities would be. So I appreciate you sharing what the heart breaks of the other side of the coin are. It's all just hard for us, isn't it. God bless you dear.
be glad that you have your parents. I have had CFS for 20 years. I have no one and I am homeless. it is at time unbearable. you are smart and very pretty, hang in there!
I agree with you. I'm so lucky I have them. I'm sorry you have it so difficult, I know it probably doesn't help but I'm truly sending love to you xx
Thank you so much for being so open with your cfs, it makes me feel less alone and I am sure many others too x
sarah bridgman just wanted to say I hope you're doing ok xx
This is so refreshingly honest - thank you so much for posting this!!!!!
You are beautiful, creative and seem like a lovely person to be around. You deserve the best and we are all rooting for you. I'm sure things are going to change, please continue RUclips. It would be such a shame for you not to pursue it. I love your channel and wish the best for you X
+Elle Roxy Thanks for being so supportive. You guys really make it all worthwhile. I actually talk to you all more than my actual friends these days! When I'm feeling low I will remember your words xx
Thank you so much for sharing this! We are always here cheering you on!
I relate so much. When you said about explaining the illness but not wanting to sound like somebody without ambition, that’s something I really struggle with. Ironically enough I’ve found setting up my YT channel has given me something to stand behind in that way, although it’s based on me being ill!
I’m sorry to see you upset- I think you’re totally right, like IS about adapting, and you’re doing really well xxx
Bless you, so relatable and really good to be able to hear you speak about this. I also agree with so much of what you say about how others perceive us or want to know how we can afford things etc. I think it's important to keep it real and you are a huge inpsiration Sophie and I am always so grateful for our chats - Thank you xxx
Oh you do have a blog lol...just looked at the description ;)
Just found your vlogs and subbed immediately. I have been ill with M.E. for longer than you want to know. I enjoy hearing others' stories and find you quite inspirational. Best of luck catching fire with your videos!
+Dawn Bennink Thanks Dawn. So nice to hear from new subscribers. So sorry it's illness that has brought you to my channel. But it's nice if we can all help eachother out and feel supported by eachothers stories. Hope you're doing ok x
Thanks for your braveness.
Chantelle Hay hope you're doing ok xx
What an interesting video, thanks Sophie!
My friend has CFS, so this was a very insightful perspective into her struggles.
P.S. You will be successful on RUclips, it will just take a bit of time getting there, and you don't have to tell anyone about your earnings (people who ask questions like that are so rude!).
+silentscreams1988 Hope it will help you offer her some comforting words. Thanks for your belief in me...and I thnk you're right about the earnings thing, it's really none of their business!xx
Sophie Eggleton She cancels our plans a lot, which is a little bit frustrating for me, but after watching your video I feel like I can understand her reasons better now. I've now kept things open-ended, so if she can manage meeting up, then I'll make myself available for her. I'm not a ''youtuber'' - but 3 people have asked me what I earn in my life, and my response is always the same ''That's none of your business, you cheeky bugger''. Keep making your great videos :-) xx
Thank you❤Sooo very much..i get it...i go thru so much of this too...I wish you the very best!!
Sending you lots of love! Xx
Life is a struggle everyday isn’t it , I have the same illness and it’s affected my life beyond recognition but life goes on doesn’t it we are warriors bless you xxx
Hi Sophie, thankyou for your v good and so true video. A 30 year struggle for me after the Hepatitis B vaccine as a health care worker in 1980's. On bedrest as I write and hope things improve for you. Take care.
I totally understand girl! I have CFS too. And live at home. Thank you for opening up! I want to make more videos on my channel like these.
Hi Teresa, sorry to hear you're in the same boat. Best of luck with the videos, hope it's cathartic x
I'm glad you mentioned the nosey parker questions about money. I don't care how things have changed, that's still rude. I just try to deflect, but if people persist, I find what works is to just look them right in the eye, politely shocked, and say "why would you ask me that?" All but the hardcore busybodies get the message. And for the rest, I don't feel bad about blowing them off. Anyone that rude doesn't deserve my attention. But, like you, I can't help feeling a touch of shame about my financial dependence, in my case on my husband.
I am in the same boat. I am older than you and have been sick since 2010. I don’t want to be living with my parents but it is where I am right now. I am thankful to have such a good family and home to live in though. I do get angry still about this being my life now, it is depressing despite having a few blessings. The guilt and shame of it all is a horrible aspect too. Ugh
I hate not being able to have a social life and that I cannot go out and dance or stand for any length of time anymore. Just being out of the house for too long running an errand is too much these days. I can’t believe how many of us are affected with this and nobody seems concerned. There is still less than 8 million a year spent to figure this out. It affects people of ALL ages not just end of life like Alzheimer’s does. At least they got to live their life before being ill, we just seem doomed! I would rather have cancer, at least there are treatments and the possibility of some hope! Sad...sad sad... I have a college degree now and can’t use it, what a waste. I feel I have no purpose and that is depressing.
Thanks for helping me understand. You're awesome
I've just found your channel. I don't know what your situation is now but you have nothing to be ashamed of. You are doing a RUclips channel and that is amazing considering the struggles you're going through. In fact it would be impressive even if you weren't struggling. I can't work due to ME either and nothing I've tried so far to earn money or work towards earning money has worked out as it all just exhausts me. I've been trying for years and am impressed at what you have achieved. I'd love to start my own RUclips channel but I am worried about nasty comments as I have quite low self-esteem at the moment.
Hi Charlotte. Thanks for leaving your lovely comment. I don't do RUclips too much anymore (but do find me on instagram @sophieeggleton and @athomewithegg). The internet is great for connecting you to likeminded people who understand what you're going through, but it's a tough space too and a thick skin is required (which I was never that great at having). I had a rough period of trolling which made me less inclined to want to post sadly. On the work side it's so hard to get to a point where you have the balance right. I find it tricky because I'm not well enough to work full or part time, but I'm also not sick enough to get any financial help. So freelance is the only answer, but then to be successful as a freelancer you have to push yourself/network/pitch which I don't have the energy to do meaning I'm not really making enough. It's hard, so I completely sympathise with you. Sending lots of love and I hope you find some solutions soon xx
@@SophieEggleton sorry to hear this. I don't have a thick skin but maybe I can develop one. I'm most concerned of people judging the way I look as I am not as attractive as you and other RUclipsrs. I guess they will but maybe I could cope with it. If you aren't well well enough to work part time you probably are entitled to ESA or the equivalent UC. Thanks for your thoughtful reply and I hope to see you more on RUclips. xx
You are so strong Sophie. I admire you and relate to you on this. Thank you for talking to us about it and sharing with us so much . I wish you good things and a good life :)
Melissa Lujan hope you're doing ok! Happy New Year xx
Thank you! 😊 I hope 2017 is treating you well so far. I'm doing okay so far haha trying to keep it positive.
Hi Sophie,
This is the first video of yours that I've seen and I found it very interesting. I think I'll make a reply video when I get a chance. I'm 24 and also have CFS, I was diagnosed 6 years ago. I find it interesting to be able to connect with so many people online who have different experiences of this condition. I live in the UK and also work at Reading Festival, it would be great to meet up there if you're there this year :) Sending you good health wishes.
Katherine xx
xKatherineStarx sorry I didn't see this earlier! Hope you're doing ok xxx
I can relate so much. I think a video on what it's like to be dependent as an adult would be great as well. You feel so much guilt about it.
I. am. SO. over the moon right now! It warms my heart that you posted this. I have been in my house unable to move for almost 2 weeks now and your videos have been keeping me company and maintaining my perspective on life. I could comment on so many of your videos, but I wanted to keep a lid on the commenting out of respect for your ability to keep up with all of us... And to not come across as a maniac haha. I am subscribed indefinitely. Never the less I've been at this place in my life for a long time now and have a ton of experience on the matter. And in looking at the comments below there's this crazy feeling that you are reading our minds. Keep it up and keep on taking care of yourself!
James Jobe just checking in to see how you're doing! Hope this year is good for you xx
Wow! It's incredible I completely forgot just how far I have come until re-reading this post. I am doing great. I have gone from totally bed bound just 6 months ago, to now playing the mountains, making new friends, and learning to backcountry ski! I really made some smart moves in medicine this past year. And it turns out professional counselling was way more helpful than what I knew from my prior experiences. The wrong councillors made it so much worse, but right one helped me notice how all the stress wears me down. It is by far my greatest effort at the moment. And the rewards are great. I may wear most of the same clothes and live in the same city, but I grew more this year than any other. Sometimes I forget that. Thanks for asking!
Sending you a big hug thank you so much for this video makes me feel so less alone in this I feel this exact way yes I have 2 girls and a place and partner and recently my eldest daughters been diagnosed with M.E too but again it's the job thing I want to be able to work and I'm constantly comparing myself to others. I even did the lightening process and the friends I had that had M.E did it also and there now completely fine yet I'm not I feel such great anger at that thinking well why are they fine yet I'm still not? xxx
+Caz Pudney Its so frustrating because we have the same ambition and drive, but lack the ability or opportunity to use it. So sorry your eldest has to deal with this too, but it must be helpful for both of you that you have someone so close to you that get's it. Not much of a silver lining I know, but I'm sure you inspire her to keep going. I don't know well enough how the lightening process works to make an intelligent suggestion, but is it something you can try again? I can completely understand your frustration, particularly as you've had to see it work for others. Sending you a massive hug xx
+Caz Pudney Do you feel like there's any correlation genetically where you could have passed the susceptibility to the disease to your offspring? Please do not blame yourself for a moment. There is literally no medical data on this anywhere and i've long been wondering if i'd ever be willing to risk having children of my own someday. I wish you well!
I tried working part time after my symptoms started. Barely lasted a year and a half. Couldn't explain what was really going on to the bosses. I was always working full time plus volunteering at my kid's school, going out. Always looking forward to things. My husband lost his job shortly before I lost mine. Our income is 1/3 of what it was. We are now in the same living situation as you. I totally agree about people asking about money!!! IT IS RUDE!!! This is how my "friend" got upset with me the other day and started in on me. She wanted me to go on vacation with her. I was always up for that but I told her there's no way I can justify it now. She started on a 1/2 hour lecture with all the usual things that we all hear. As far as forgetting. I do it all the time. I didn't show up for a meeting at my daughter's school yesterday. My brutally honest teenager told them that I was probably sleeping at 1 in the afternoon. TMI! People have no idea what kind of energy it takes to just look well. My husband jokingly has some names for what I look like after a few days of not bothering to shower or comb my hair so I feel you! I agree. The collateral damage is probably the worst. The guilt, shame, feeling misunderstood. Keep up what you're doing. Thank you so much!
i really enjoy hearing you tell your story. I know you make me feel happy for you just being YOU!!!
I just started my channel on NYE while i had to stay at home. I am sick of hiding and i posted the video without makeup on the couch and crying talking about this double life I feel i lead. it's sooo hard b/c i want to get out to get nourishment on a social level, but then meet people who become friends who i can't follow thru with and meet guys who are charmed by me while out...but then there is this terrible secret i have. i can't maintain. and decided to just *uck it. show the world me. you may be able to relate to some based on some of what you say in your videos. I was about your level at your age (early 30s late 20s?) i'm mid 40s now and it's mod/severe now. Honestly, you say you don't want to repeat yourself, but not enough people are speaking. we aren't getting the help. we have been shamed into silence. no more. xo
Susan Marshall so glad you have started a channel. It will be good for you to vent but also help continue to spread the word about the illness and increase awareness. You may find it helps people in your life understand you and what you deal with on a daily basis. I really hope you get something out of it - at the very least you will likely find that people dealing with similar issues with reach out to you and be a comfort. Sending lots of love
That's my intent. to spread the word. too many people suffering so badly. it's terribly isolating. Check them out, you may relate! i've been at this over 20 yrs. and have tried everything. i'm going to be making more and more as energy allows and talk about my journey but also educate about this illness as I've learned a lot over the years. i'm not tech savvy but am trying. need to be more succinct too...love to you too.
I know that shame because I have dealt with it seemingly all my life. I have other illness but people think I look normal and bosses have misunderstood me.Family has judged me and friends may be ahead of you.Hard to hold a job if your body always changes.The cognitive issues were the last to admit to myself because I thought it meant I was stupid to not remember things and to misunderstand so much so often and be somewhat clueless.Yep, it's real and a huge part of our illnesses involve the stress of other's treatment and opinions.Be encouraged everyone!
I can identify so much with what you talked about in this video. I have just moved back in with my parents at the age of 30. I owned a house with my boyfriend. But we broke up so we had to sell it. I have M.E and although I can work part time I don't earn enough to support myself. My ex boyf was supporting me in our house and now my parents are supporting me. I feel a great deal of shame that I can't support myself and my parents still have to look after me. It's very frustrating that you can explain about your illness to people but they don't understand and also seem to forget you have it. I don't want to be one of those people who is always going 'yeah but I have ME'. Sadly it seems it's necessary to. My biggest source of embarrassment is the brain fog. It's the most obvious symptom of my illness and I feel so stupid when I forget what I'm saying or can't speak properly. I used to be so switched on but now I'm a bumbling fool.
Jemma H brain fog has been debilitating for me. I hold onto hope that it will get better through diet and exercise. I wish you all the best on your journey.
I can relate to your story and the social media comparisons that cause emotions you cant control. Id love to talk with you..im here for you. I have cfs and eds type 3 also.
besides living with parents / i have my own pad. I am exactly like this. everything you saying describes me. great video. thank you. wishing you the best.
Wishing you the best too, thanks for all the comments, I love to interact with people on here so it's nice when I see new ones x
thanks for the video.. having similar problems, it's good to know I'm not the only one
Definietly not alone. Sending love xx
I am new to your channel & so this is the only video I've seen of yours just yet, but I'm really hoping I'll see that things feel much better for this.
I did share many of these feelings you've shared ❤
Thank you so much for your honesty. It is really helpful.
I god damn love your radiant little soul
+poppyfield aww well I love how you radiate kindness! xx
You ARE beautiful and I hope you have a better week from here on out xxxxx
+Paintitblackxo oh thank you, you gem. Hope you're doing ok xx
Your hair looks beautiful !
It was too hard to look after so had to go for the chop sadly, much easier now x
As a a fellow CFS/ME sufferer, I can truly relate!
Thank you for this.
Thank you for watching, hope you're ok xx
Your very ill but your beautiful inside out! You may live with your parents but all they want is the best for their child and YOU ARE doing your BEST at the moment, yes they want you to be healthy and happy ofcourse that's a parents privilege! And LASTLY BE PROUD OF WHAT YOUR DOING IT TAKES ENERGY (you don't have) and your making the best of a shite situation NOBODY CAN ASK MORE OF YOU AND YOUR FRIENDS NEED A WAKE UP CALL YOUR VERY SICK AND YOU LOVE THEM THATS WHY YOU CHOOSE TO SPEND THE LITTLE ENERGY YOU HAVE TO SPEND TIME WITH THEM!!!!! Next time someone asks what you do maybe say "oh I advocate for the chronically ill and assist in educating their loved ones on how to help them!!!!" If they ask what you earn at that point your answer is "it's a very rewarding position!!" Be proud your showing loads of courage and without sounding like an idiot I THINK YOU ROCK OH! And answer why you live at home " we are a close family and at the moment there is some health issues in the family and it was better for us to be together to support eachother, oh yes it's not easy at times however I am very lucky to have a close family, many don't have that!!!!" Ok now ideas for a fun video hmmmmmmmmm hard one ........ Maybe some role playing where your dressed up with a few props just silly glasses, bow I. Your hair and ask ALL THOSE REDICULOUS THINGS PEOPLE SAY TO US PERHAPS ASKING A CAT OR A CHILD OR A DOG OR A FRIEND WHO WILL KNOW WHAT TO SAY????!!!!! Sorry matey but fun and chronic illness is a hard one SORRY!!! But again BE PROUD OF YOU!!!!!!!!!!! PLEASE WHAT YOUR PUSHING YOURSELF TO DO TAKE LOADS OF COURAGE IN OUR POSITION AND SADLY FOR ME ALL MY FRIENDS ARE GONE NOW SO JUST KEEP DOING WHAT YOU CAN BUT REMEMBER PLEASE BE CAREFUL AND MAKE SURE YOUR NOT PUSHING TO HARD BECAUSE I KNOW I JUST MAY HAVE PUSHED ONE TO MANY TIMES !!!! Ok I am crying now lol (but hey that's what this is about sharing and caring about ourselves and understanding eachother without ALL THAT BLOODY EXPLAINING WHICH, LETS FACE IT, ITS BLOODY AWFUL !!!!!!!!!!!! Health one day, happiness when we are happy love baby steps and may the light shine bright on us all again without it being painful .......... Hugzzzzzz to all (the gal from OZ) muahhhhhh
I don't see it that way. I've managed to move and live alone. Though I'm not sure about my future job situation and money, I'm taking care of myself. I don't have any social life, no friends, but I don't compare myself to others. I just enjoy being alone with myself and the only real problem I still have is money. Otherwise I'm happy and satisfied. I managed to completely get rid of my severe depressions more than 3 years ago. I have been diabetic type 1 since 1994 and now also ME/CFS. But I'm not unhappy, not at all. I love myself and just being alone with myself. I don't feel guilty or ashamed. When it comes to relationships I don't want any at all anyway, only bad experiences, but alone with myself I'm happier than ever. So I don't miss anything actually. I don't get why people are running after having relationships. I've never understood what's good about all this. I only see it negatively, and being alone is the best thing ever. And when it comes to parties I think the same. I've always hated them, and now I actually enjoy having a much better reason not to go to them than just that I don't want to because I hate them.
How does social security disability insurance work for people with ME/CFS in UK? Can you even easily prove you have it if they don't have the tests available to everyone? How much does it pay by the way? I know in the USA it doesn't pay enough for even an efficiency apartment in major populated areas, not to mention other expenses. You have to qualify for it in the USA by working for like 10 years full time first to earn up points. Then if you make a high salary near six figures you can make a maximum of something around $1400 to $1700 a month when you accept disability insurance payments.
I know the feeling. Been through that as well.
Be brave Sophie ! ♥ u can do it!
+Fernanda Mu Thanks Fernanda!!! I'll try xx
I can 100% relate to this video. Im sorry you feel like this too. I was diagnosed with fibromyalgia around a year ago now and i have become socially withdrawn, dont go out and dont want to! Cant work and find it hard to make it to college. My anxiety is through the roof. Its terrible. I have applied to study midwifery at uni but am going to have to withdraw my application as i know i wont be able to cope which is soul destroying! I love your videos and always watch when im feeling down xxx
Thank you for sharing this
She is so delightful,...how could the men in her town not be beating a path to her door! (CFS, or not)