Living with Chronic Fatigue Syndrome (ME/CFS)
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- เผยแพร่เมื่อ 25 ธ.ค. 2024
- I've wanted to do this video for a while, to try to explain what it's like to live with ME/CFS. I thought it would be a good idea to do it whilst I have 'brain fog', to better illustrate what it's like for me when I'm exhausted- that's why I'm talking so slowly!
Thumbs up to let me know you like this kind of video. Do you have your own experience with ME/CFS? Please share in the comments down below!
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Jessica; thank you for having the courage to film yourself while "in a fog", to explain CFS. I had no real understanding of its nature previously, I certainly do though now... The difference between your usual general demeanour and that of your appearance here, is palpable and instructive. I hope you`ll forgive me if I say that I think you are an entirely admirable young lady, in so many ways... Much love to you... Rodger
+toff358 I am glad you found the video helpful and informative about CFS. I can only speak of my own personal experience with it but I hope what I shared may help others with similar conditions feel less alone. Thankyou for watching and commenting.
Kudos for the Video clip! Sorry for chiming in, I am interested in your opinion. Have you considered - Dinanlinson Rebooting Health Approach (google it)? It is a good exclusive guide for getting rid of chronic fatigue syndrome minus the hard work. Ive heard some super things about it and my friend at last got amazing results with it.
Great video content! Apologies for chiming in, I would appreciate your thoughts. Have you heard the talk about - Dinanlinson Rebooting Health Approach (search on google)? It is a good exclusive guide for getting rid of chronic fatigue syndrome without the headache. Ive heard some interesting things about it and my BF finally got astronomical success with it.
Great Video clip! Excuse me for the intrusion, I would love your opinion. Have you considered - Dinanlinson Rebooting Health Approach (do a google search)? It is a good exclusive product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some interesting things about it and my m8 finally got cool results with it.
@@jessicaoutofthecloset hello
Most videos of people explaining their chronic illnesses are filmed at their creators' best, but seeing you film while you're in a fog was so comforting. Thanks for your bravery, it means a lot to me to see that I'm not alone in this! Hope you're as well as possible!
Hi Hannah, I am glad to make you feel less alone in this! Thank you for your comment x
@@jessicaoutofthecloset I admire you for being able to make this video and explain how I feel. The struggle IS Real.
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I have cfs and I could tell from the moment you said ‘hi’ what state you were in and I couldn’t figure out why you were choosing to do the video when you were ‘not at your best’ (which is how I think of it for myself) but as you went on it made perfect sense.
I usually try and avoid people (except for my close family) when I get like that partly because my pre-cfs self was quick witted and processed things really quickly and it hurts my ego to not be like that anymore. I still struggle with accepting the ‘new me’ and I need reminders that I don’t have less value because of it even though it changes how I interact with people and what I can do in the world. Just explaining the idea of cfs is so hard (especially with it’s ridiculous name - I don’t get ‘tired’ really quickly, I never had the energy in the first place. I have to be restrictive with the little amount of energy I do have and if I push it this is what happens... and I very quickly reach the level of overdoing it. And sleeping at night does not recharge you - you are at the same diminished level of energy the next day. It compounds. It’s like living your life as a smart phone with a low battery and a charger that doesn’t work properly.)
Thanks for being brave in your vulnerability and letting people see this.
Tee Hlfx Same! I struggle interacting with people because it's hard to make jokes in monotone whilst getting one's words in the wrong order, and without that energy I don't really feel like myself. People still tell me I'm witty and the like, but it's really hard when you put so much energy into being around people only to barely feel able to present as your true self. The closer people are, the more you get away with because they are used to your nuances
Oh i really like the charger analogy.... it’s like it works on occasion but only a little bit and no one knows why or how to fix it
I absolutely haaaate not being as quick as before. I used to have THE BEST MEMORY ever, and I praised myself on that. Now, I just feel like a complete mess. I forget evrerything, I can't think, I can't form complete sentences without long pauses, and I get embarrassed and just stop talking..
Bless your heart!! I cried while watching this.... not only because I can completely empathize with what you said and am just so sorry that you have struggled so hard for soooooo long, but because of your bravery! Thank you for being willing to show the world the "not-so-pretty" side of health issues. People need to know how difficult it really is: that it takes some of us 20 times as long to accomplish what they do without even thinking twice about. You are a young, beautiful hero to so many of us!!! Take care & have a blessed day!!
Thank you so much for such a lovely message, it was really kind of you to take the time to write 💗 I really hope that by making videos I can show the truth of living with an invisible illness but also give some hope to those who were in the terrible place I once was x
I cried as well because I'd never heard it explained properly before, or seen it in action besides in the mirror, thank you Jessica ❤❤❤❤
Melinda Gandy crying right now
Excellent Video clip! Sorry for chiming in, I would appreciate your opinion. Have you tried - Dinanlinson Rebooting Health Approach (search on google)? It is an awesome exclusive product for getting rid of chronic fatigue syndrome minus the normal expense. Ive heard some incredible things about it and my cooworker after many years got amazing success with it.
My girlfriend, the love of my life, has ME. We don't get to see or talk to each other anywhere near as much as we'd like, I think a lot of what she goes through she hides away even though all I want to do is to be there and to help her through everything. To tell you the truth, most of the time I try to hide away how tough it is for me, lonely mornings and evenings, lonely trips to the cinema, lonely hobbies...Thank you so much for posting this video, I've never seen my girlfriend like this but there are times she's explained a few of her flair ups and how bad they can get, like the house burning down around you and not even having the energy to get out of bed, let alone the house.
Simon Peart
💖
As a patient with ME, I can tell you from my experience it is probably a conflict between wanting to share and embarrassment about the severity of her symptoms as well as not wanting to burden you. It can be tough to let people in, even when you love them. Good luck to you both.
Pop
I actually LITERALLY had the house burning down thing happen to me! We had a wildfire start near us and quite a few of our neighbors were packing up their things and evacuating just to be safe, but I'm a stay-at-home-mom with 3 kids (aged 8,7 & 5 at the time) with ME and I just didn't have the energy to do that if it wasn't necessary! I did call the hotline and see if we needed to evacuate and they said no, but it turned out we did need to! Because of my ME, we were not able to bring ANYTHING with us, because I had to wait until the last minute when a cop told us to get out of there now! If I had not had ME, I would've had the energy to evacuate sooner like my neighbors and at least bring our important documents with us or something, but as my health is, we lost EVERYTHING, including our apartment we were renting! in the wildfires!
@@Cassie03 I’m really sorry to hear that but I’m glad to see you’re doing ok and that you and the kids got out, that’s the important thing
“Its like being drunk. Really drunk”. My friend, I completely get that 😩. I got accused of being drunk at work when I was going through a bad flare up. I could barely walk and i had slurred speech.
When I have a flare up, this is actually EXACTLY how I am. Brain fog, pain, and everything. I completely get it. Completely. Thank you for this video
Even though you're experiencing extreme fatigue your still funny and your hair is still perfect
I have ME, I was a teacher and now I am not, exhaustion and brain fog are awful, the worst for me is forgetting what I am going to say right in the middle of saying it. The exhaustion, I wish there was an adequate description for the state of exhaustion you find yourself in. Thanks for this.
Oh, and don't do 'graded exercise therapy' as it is not helpful, in fact it is now being proven to be unhelpful and can set you back.
Thank you for sharing. You're right, 'tired' or even 'exhausted' are not enough to accurately describe how this feels and definitely 100% NO ONE should ever be made to do graded exercise- I've been there and it only took me backwards x
There are so many other side effects from cfs/me which isn't justified by the word 'fatigue'. I take it, like me, if you were to list every symptom associated with it you could write a novel (if you had the energy lol).
Some of the weirder moments I've experienced have been unable to recall where I live (seriously). Recently I was stood at a zebra crossing and lost focus haha there were cars queueing! I don't know if I was there 5 seconds or 5 minutes.
Paul Gascoigne I know exactly what you mean! It's like that for me sometimes too. And I immediately forget certain actions I've done. I wanna do things and stay focused so badly, but I just can't find the energy
I´m sitting here with tears in my eyes and I think how easy my life is compared to all you had to go through and still do and nevertheless you can smile, you are amazing and I admire you so much!
Thank you for your kind comment 🌸
My mum is the only person I know with CFS so I've never come across anyone else's experience of it so thank you for making this. She has it extremely bad and I honestly have no idea how she carries on everyday, working a full 40 hour week with no help at home (I'm away at uni and my brother doesn't help with chores and cooking etc). The brain fog isn't really periodic for her she has it all the time, when she gets home from work all she can do is sleep. She tries to do as much as she possibly can but you can see what a struggle is is compared to before, the thing is though so many people don't understand, at first when she got ill a few years ago they'd be saying 'oh we're here for you get well soon' without realising it's chronic and won't go away it's forever so she says to me now it's like people are fed up with her for it and want her to hurry up and get better or something :(. She tries so hard to carry on as normal though, like we used to go out shopping together all day before she got ill but now she can only manage about 2 hours and she feels so bad about it, even though I'm always telling her it's perfectly fine and her health is more important than some silly shopping! I wish there was more awareness of CFS so it's amazing to see somebody else saying so many similar things to what she struggles with, I'll definitely show her your videos on CFS, thank you for making!
How is your mum now? I hope she has more support
@@politecat4236 A lot better at managing it these days actually, thanks! Working at home due to Covid has actually seemed to help and she knows her limits better after living with it for so long
@@ThornyRoseV okay thanks for your input on my mother's health from the limited amount of info I wrote 3 years ago
@@AcrossTheStars97 why are you bashing your brother when you’re not even there to help your mom? That’s a low blow
@@donttalktomeyoureannoying8736 hi, so this comment was 5 years old, don't really know why you felt compelled to reply? Also as per my comment, I was away at university literally 100 miles away, don't know how exactly I can help with chores from 100 miles away? You got an extra long broom I can borrow? X
I sent this video as a link to a friend of mine who are struggling with ME and most of all struggling with how nobody understands her. She now uses some of your words and even link your video to other people whenever she experiences ignorance, rudeness, lack of understanding or even curiosity from others. She finds it so hard to put into words and describe how she feels but your video is a huge help to her. I of course have attached credits to you on the link everywhere.
wirina holstein y
You're amazing. Great way of illustrating your condition, and I hope it wasn't too discomforting.
+David Lee Andrews Thankyou so much! It felt like the best way of getting my point across..actions speak louder than words.
Brain fog fucking sucks. I can see the struggle in this video. When the fog and fatigue hit at the same time, I can barely function. I switch words up and forget simple ones. This video is SO fucking accurate. People think I’m mental when this happens to me. Sending my best to you.
Hi! I just started my channel on my CFS journey and recovery and i would love it if you would check it out!
Thank you for sharing this, I was diagnosed with chronic fatigue syndrome when I was in high school just before my exams, I didn't get the results I wanted but I passed enough to get to college and I'm now in my final year of uni with only a couple of weeks to go. Getting used to being in pain and exhausted all the time isn't fun but I think the worst part of M.E is that people can't see it and often don't understand even those closest to you because we are all so good at hiding how it feels but thank you for giving visibility to this frustrating illness x
Hi! I just started my channel on my CFS journey and recovery and i would love it if you would check it out!
I too have CFS, it’s due to my Hashimotos disease and Fibromyalgia. It truly is awful and because people can’t see it, I don’t look sick, they are not sympathetic. Thank you for sharing. 😊
Jessica, thanks for helping others to understand more about ME/CFS. I have two members of my family with the condition. Your description of lying on the back seat of the car to travel is very accurate, I remember it well. Both people in my family are gradually improving. For anyone interested, we have found useful, among other things: short-term planning with achievable goals ( always have an easier plan B option), fixed daily rest periods, graded 'exercise' to individually suit (people not familiar with the condition may not realize that for some this could be 'walk to the bathroom and back') and increasing the activity in incredibly small increments only when consolidated and although winter is tough with colds and other viruses, as you say, spring is so very much better (try to have a few extra support strategies in place for next winter). After all you've been through, I can see you have a very strong spirit, keep up the good work, you are doing amazingly well. x
+RCC German Thank you so much for this comment and sharing your experiences. Your family members are very lucky to have such an understanding and empathetic person to help them x
I myself much prefer the term pacing compared to graded exercise. It makes it clear you pace yourself and do as much as you can, but not too much.
Honestly, when you listed out apologies, I started crying. I've done so much apologizing and wanted to do so much more because of things I've had to miss out on. While I don't have CFS, my own struggles have cost me friendships and made me unable to do things I wish I could. It's not a good feeling.
But, I want to thank you for putting this out there. For so many people who are able-bodied and neurotypical, these types of things are unimaginable. So, for you to represent us in such an accessible way, I think it really helps the dialogue.
It’s so helpful that you explained brain fog whilst having brain fog. I’ve had brain fog unrelated to CFS (I had epilepsy and sometimes it happens with more “severe” seizures or when I had a bunch in a row) and it’s so hard to get people to understand that it’s real and I’m not faking it
Thank you for making me feel legitimate and not-so-alone (months on!) although I wish you didn't have to suffer too...
Thank you Jen, I understand what you mean :) I am very happy I help you feel not-so-alone x
Well done! It is so difficult to strike a balance between allowing people to see some of what it looks like by recording while in the midst of an episode and having enough energy to pull it off. Bravo!
One of the things I struggle with the most is wanting to be very open and honest about my energy levels but at the same time being unable to film or create when in that place so thank you for recognising that, it means a lot x
I'm watching some of your older videos after watching you and Claudia become moms. I love learning about your disabilities and am so glad you made these videos. It's important that people talk about this stuff and understand more so we can do more to help. Love you so much babes, you're a beautiful soul and a wonderful person.
Thank you for doing this Jessica! I have ME/CFS, and I am going to send this video to folks so they can see what it is. Watching you slur and brain-fog and lose the ability to find the words. That is EXACTLY what happens to me. I'm amazed that you managed to make an entire video in this state, and I'm sure it cost you a lot in payback. But it means so much to me to be able to say: "that is what happens". Thank you for being so open about your life and so honest and such an advocate for disabled people and LGBTQ+ people. You are an inspiration and I am so glad I found your channel. (Also, I love the gay pirates! And Polari. And Rupert! And the mobility aids series! And you showing us how fertility treatments work and how they affect you emotionally. All that.)
I have CFS/ME, I knew exactly how you were doing the moment I saw your beautiful face and you started to talk. Thank you for having the courage to show exactly what we deal with. I tried to do some laundry, tried to clean, Im too lost in the fog, so Im back in bed. Bless you darling.
Hi! I just wanted to say thank you for making this video. I just discovered your videos a few days ago and I'm really glad I did. This was not the first video that I watched of yours and I was charmed by the others. So I became a subscriber. Discovering this particular video though, made me emotional, so I had to write, possibly, my first ever TH-cam comment to thank you. (I'm incredibly shy and socially awkward so I never say anything online.)
I was officially diagnosed with ME/CFS and fibromyalgia recently. I've been sick with it for about 1-2 years now. (it's hard to pinpoint when it started because it was misdiagnosed a few times.)
Seeing this video, made me cry with relief. Knowing that someone knew what I was going through. I always knew that there were people out there who have CFS and have support groups, but I never made the effort to seek them out because I have this fear of talking to strangers. But, after watching this video, it made me realize that finding others who have it and understands the struggles is so much more than my fear.
I have family and friends who try to understand what I'm going through and help me with it, but they can't fully understand what I feel. Especially for family, it gets frustrating and upsetting when they get annoyed at me for asking for help or make comments such as "Those pains are no big deal, I deal with them too", "Just ignore the pain", or "Why can't you do this, you were just moving before." They do this occasionally and I don't blame them for saying or acting that way. They have never gone through it. They don't know what it's like and how it feels. So, at least talking and getting to know people who do understands it, would make me feel less alone about having it and that I'm not crazy for feeling what I feel.
Thank you for making the videos that you make. You encourage me a lot. Please continue to do what you do for as long as you can and want to. You have my support.
(I was typing this with brain fog, so if there is any sentences or words that don't make sense or don't seem right, I apologize for that. I think I reread everything I wrote over 20 times to make sure it was at least understandable. Also, I had to comment that in my personal experience with brain fog, I talk normally, so seeing that you talk a bit slower was very interesting to me.)
I really appreciate this. I'm not diagnosed, but I have had extreme fatigue for 5 years. I'm now looking for videos to explain to my loved ones how hard it is and what it feels like. I really appreciate seeing you film during brain fog and fatigue because that can really show what it feels like inside.
Thank you - I have Fibromyalgia and it sounds more like an updated "title" for you chronic fatigue, especially with the muscle pain.
I have to back out of plans and some people think I’m lazy or don’t care about them but it’s because I have trouble getting to the loo by myself and I can’t predict when that will happen.
Love you - you are an enormous inspiration!
I'm not even two minutes in and I'm about to cry bc it's so different to see someone presenting the same kinds of symptoms that i do. Thank you for helping me feel seen 🧡
I love this 💜 I was diagnosed with m.e when I was 10 years old, I am now 20 years old and am still struggling but am much better than I was. I really appreciate all your videos and the awareness you're spreading. Everything you do is wonderful
Jessica you are so braveee. I don't have official chronic fatigue but every day in the afternoon I feel like I'm fatigued and it's honestly made life quite difficult and a 9-to-5 job essentially impossible. Thanks for making this video - it's super validating. Not overloading yourself to prevent a crash is SO. TRUE. I hope that eventually I'll be able to find a diet or lifestyle changes that can help mine.
Jessica; Thank you so much for sharing this video. I have recently found your channel and I am a 20 year old person who is living with severe chronic back pain that has not been diagnosed for 6 years now. Constant, constant body pain can feel extremely isolating, especially when you quite literally need to be lying down (without much ability to move). Your videos are extremely informative, truthful, and make me feel a positivity and hope that things can get better (even if your body doesn't feel 100% better). Thank you for sharing your experiences with living with your disabilities.
I’m late to the cow kissing party but as someone with CFS/ME this resonated with me so much. Thank you for sharing with everyone. It truly shows what we go through and how horrible brain fog and fatigue is
Wow. I am so fortunate. This made me count my blessings. Your fortitude is amazing to push through so much discomfort and difficulties.
I've been sick for a long time and feel alone with it. Thank you so much for giving me hope that I might be able to survive and have a happy life just like you have. All my love to you
Thank you for making this video because they have been trying to figure out what is wrong with my mom for YEARS and what you are discribing is exactly what she has been experiencing
Thank you SO much for making this! (and having the courage to make it while in a brain fog. Man...that's strength right there). I have brain damage and CFS so I empathize. I want to be more like you! Taking on your disability, owning it, and sharing it/strengths with others.
This is the BEST explanation of ME/CFS I have ever seen. It feels exactly like that ❤
I certainly know when I’m like this I would not have the motivation to make a whole video explaining it. Thank you for your courage and persistence to spread your story. These videos have been helpful to give the people in my life a little insight into what it can be like
This is an excellent description of ME/CFS - thank you, Jessica, for filing this - it's clear it took a lot out of you! And what a good idea to record on a bad day. I tend to only record when I am feeling my best. but it's a good idea to show people what the worst looks like, too.
Hi Jessica, greetings from Puerto Rico. Thank you so much for filming this. I have Hydrocephalus, and deal with fogginess on a daily basis, but have a hard time explaining it. I feel like my head is floating, and my memories and thoughts disappear. Sometimes they come back, and others... well, you get the picture. I'm in nearly constant pain because of my condition, and the temperature here isn't helpful either.
I have never heard such a understandable description of CFS, but hearing you talk about it I don’t know how to feel, but I recognized a lot of your description, things like I had Thanksgiving and the next day I could hardly function, I hurt, I kept falling asleep randomly, I couldn’t communicate, I couldn’t put thoughts together, and this happens after any time I do anything, I always end up going home before everyone, and I always end up sitting alone and just trying to gather strength to keep going halfway through, and most days I have always said I have enough energy for about 3-5 things a day, so that usually is going to class or work (which work uses much more of my energy then class), eating a meal, taking a shower, cleaning my teeth, and if I can I will get homework done. Everyone, including me, is so frustrated when I say that I can’t do something to help, but I only say I can’t when physically it isn’t an option for me, and it just makes it so hard, especially without any real understanding or diagnosis on anything, and my parents already blatantly ignoring my chronic pain and denying everything from this to just that I have weird allergies. I was in that fog on thanksgiving and I felt so bad that I couldn’t be present and enjoy time with my family, but I just couldn’t enjoy it past the haze of exhaustion from cleaning my bathroom and bedroom and the effort to even just try to be present in conversation.
i’ve been looking at some of your older videos recently that are relevant to what’s going on in my own life, because they’re always pretty comforting to me. the way you are in this video reminds me SO much of how i was when i called my mother the other day, and it’s nice sometimes to see that im not the only one 🥲
Oh! *gentle virtual hug* I've had fibromyalgia/chronic Lyme since I was 17/18. I can relate so much to many of the things you experience now with the CFS. It truly is like being trapped in a drunk cloud. You are SO inspiring. Beautiful soul. Such a long, rough road you had. Much love to you.
It's disheartening to have to pass on social events, move slower, need help with "basic" activities. I feel that having these challenges makes or breaks our spirit, as people. It's so encouraging to see a similar soul, not taking life too seriously and learning to find happiness in the little pleasures of life....and understanding what's -really- important. You are absolutely amazing! Take care of your needs. 🤗
Yr life is my life. For years I was "fake" then I got tested. I just went thru the scooter/wheelchair dilemma and found u. Now when my Dr asks "how was yr week" I pick a podcast becoz u can say what I feel so much better. What I take from u and I teach at uni is suicide prevention becoz bad days are mixed with good and this is how it is for us NOW. Thank you.
Sound, yes! And for me light also causes me pain!
I also developed CFS when I was 17, in my A-level year, following a stint in hospital with the Epstein Barr virus. In those days my mum had to wash me. I have improved so mum since then. Im 33, I work three days a week and I'm maxed out.
But I must be honest, I still get frustrated that my daily activities are limited. My close friends understand but most colleagues don't. And that adds to the frustration.
It’s very obvious the difference when you are experiencing this . But you’re still amazing even when dealing with , it very brave to show people this so we can really understand
Ohhh So that's what the fog looks like from the outside!
Thank you so much for posting this ❤
I just found your channel and have been binging on your videos and I want to thank you for this video. I am a registered nurse health coach (I work through phone calls) and a lot of my members suffer from CFS. I have had a difficult time coaching these people because I didn’t understand exactly what they are going through. This video has taught me so much and has given me a real insight into the condition. I feel that now that I have this new knowledge I can coach from a different perspective and hopefully make a more significant impact on their self care. Thank you for helping make me aware so I can be a better coach.
I have cfs myself, but mine gets worse whenever I have my period. It also took a few years to find out what I had because I was misdignosed as something else. It's hard but, so is life. Thank ya for this video, I hope ya feel better and have days that fill ya with joy for when ya feel bad.
Tsukime Shirokage Yes mine also gets worse around the time of my period. For the week leading up to it I can barely lift my head off the pillow.
Oh my gosh that sounds so intensely painful, I can't believe you took your exams in that state! You are an incredibly strong person! Thank you for making this video, this disease is so misunderstood. Mine started after a really stressful time and I came down with mono. But I'm hopeful a cure will be found in the next few years!
Thank you, it's very important to spread awareness. Not enough people are talking about it x
Thank you for making this video. People need to understand this disease. My mom and one of my best friends both have it.
I’m sorry! Not many people understand A disorder if you don’t look sick all of the time. There was a time when I didn’t feel like a person. You lose friends, you lose yourself.
Wow,,, you are such an inspiration !! How do you manage to do all these amazing things💜Thank you for being alive, happy and spreading positivity!
Thank you for bringing awareness for the chronic illness community!🦓💛
This is so endearing, thank you. I experience aphasia when I have migraine days...As you know, they can go on for days. I'm a broken record repeating the issues around communication and misunderstandings with those around me...It's just so hard to communicate the exact feeling of brain fog, aphasia, muscle problems and all of the other myriad of issues...You are brave and wonderful doing all of these videos, very very happy to have found you!
My back injury was triggered today when I had to pay my respects to a very short person. So I am on a straight up Jessica binge right now because you inspire me.
Ms.Jessica I also had and still have occurring brain fogs. I find that it happens when you're in a really low mood and that you're not in the moment. So I fixed this problem of mine by always making my mood high and by making sure I am present in the moment. I find you as an amazing person and I empathize with you. Earned a sub Miss. I also believe that "we" had this implication because of anxiety and depression. I also make sure I always have enough energy from "foods" as without it I can't force myself in a high mood then having fatigue and cfs.
I have a chronic sleep disorder called Idiopathic Hypersomnia that is honestly fairly comparable to CFS because it's what I thought I had before I was diagnosed. This was a perfect way to portray the fog, I honestly could never manage a video in that state
I've been struggling with exactly this for roughly half a year now, and trying to get diagnosed for a couple months. thank you for making this.
Hi! Just wanted to send a note, I recently discovered your videos and have been binge watching them all! New and old. I'm a support worker for kids with disabilities, find vintage stuff cool, have numerous LGBTQ+ people in my life, and find you and Claudia hilarious and fun to watch! Anyway yesterday I saw the video where you were talking about how your friends and family tell you that your speech has actually gotten clearer over the years, and I found that very interesting! But it made me very curious what your voice used to sound like... then i came across this video and another from 2016 and i can totally hear a difference in clarity! Obviously this one when you were beyond tired would be even less clear, but still, it's very interesting! Anyway, love your videos and can't wait to see what's next :)
I did the same, because I was also curious, and can hear the same difference. It's pretty amazing what can change over a couple years.
Hi! I just started my channel on my CFS journey and recovery and i would love it if you would check it out!
Hi! I just wanted to say how much i loved this. I have CFS and i have re started my channel about my recovery. I am so pleased there are others out there who are in the same boat as me!
My mom has struggled with chronic migraines, CFS, OCD, ADD, anxiety, depression, severe nausea, memory issues, and I think other stuff too, but I can’t remember. She’s had it for pretty much as long as I can remember. Since I was about 7 or 8 years old I think. She would lay in bed for days and weeks at a time, had multiple surgeries, multiple tests, medications, specialists, everything. But she just kept getting worse. She couldn’t work anymore, because the migraines made it impossible to do work on the computer. Then my older brother died, when I was 9 and he was 20. She deteriorated a lot more after that. Sometimes when my sister and I would come gone from school, we’d be afraid to walk in her bedroom and she’d be laying there, passed away, just wasted away. She moved out of state for a while when her sister got sick with cancer. She seemed to do much better when she was with her sisters, brothers and parents. When I had my daughter when I was only 16, it seemed to give her a second surge of life. She moved back to Maryland with us, and helped me get ready for the baby. She still struggles. She’s lost so much weight that sometimes she just looks like she’ll break. But she’s hanging in there and I look up to her a lot for still being here. I don’t think I could handle what she handled on a daily, HOURLY basis. Women like you and my mom are an inspiration.
Im so happy to have found you ..i love you're videos and all the education you give..i have trouble explaining things and you do it so well..from one disabled person to another thank you so much for making ALL your videos..and i adore your wife also..you guys are awesomely adorable 😘😘😍😍
You surely are a treasure. I'm really happy to have come across you. You're like a key you have to pick up in a video game to proceed. Such an angel.
Solidarity 💖 I have this as well, it’s so hard and almost no one understands. Its great to feel seen
Thank you for posting, I hope you've gotten to live a happy life these past five years!!
That description of when you rag doll really resonated with me. I’ve experienced similar things but putting it into words has always been hard. Thank you for sharing this and helping others like me find the words to explain their bodies. I know how hard finding words can be to begin with with fatigue and bodies doing weird things makes it even harder for me at least
The other day I made tea when I had brain fog. I made some for my Dad too, and when I went to put the cup down I tipped it and it started pouring out. My Dad had to tell me to hold the cup upright before I realised that that was why there was tea everywhere... It's so annoying! It makes me stutter too. Props to you for making this video whilst dealing with brain fog. And congratulations for still doing your exams! I was very ill when I did my GCSEs and it was the hardest thing I've ever done
I have IIH (pseudotumor cerebri) and i don’t remember the last time I didn’t have chronic fatigue. I can’t do anything. It’s so awful. 😔
You explained it PERFECTLY when you said it’s like you’re trapped inside your body while it’s asleep. Like I just want to move my finger but I can not. I CAN NOT! No one understands!
The past few years have gone by with little to say for them. Tutors helped me get my GCSEs but I never made it to A-levels and now my peers are in their second year at university I am feeling pretty left behind. Not just in comparison to them because I care about that fairly little these days, but I'm terms of my own life and with what I want to fill it. Hearing you talk about spending a year and a half in bed (I've spent the past six months house bound and mostly bed bound with no signs of getting better any time soon... If anything, worse). I don't know how my life is ever going to change so you talking about taking four years to get to uni and things getting better really means a lot
Wow. You are a hero and inspiration to many. Thank you for educating we who don't understand, and for being a place of support for those who deal with similar issues. Great work.
you can tell in this video, after watching the others, that you are tired.... and so incredibly so. I am sorry you have to suffer through this sometimes, and I 'm so glad you are trying to educate us about it. I love your personality, and they face that you are so stron about it!
You are so inspiring. I also have CFS/pots. Plus brain damage from a prior stroke due to carotid artery dissection. Can you believe it was caused by a cross fit class. It happened 6 years ago, I've only had Pots for 16 months . How I wish I could stand in one place for 10 mins . It just goes to show you that time does heal ! Btw I love all your videos💜💛❤💞💖
Oh my!! This is so so so good, this is exactly how I feel. You’re amazing
Thank you for sharing this. I got an auto immune disease which makes me suffer . Sometimes,I just hate myself! Or I feel sorry for myself. I felt not alone now.looking at you ,you look like a Hollywood star from old times . You are a beautiful person inside out. God bless.
hugs i can totally relate to this , i also just wanted to say i love the fact that you use sign language in videos im not deaf/hearing impaired but i know a few people with chronic illness who are hearing impaired and i love seeing this inclusive approach in your videos x
omg, i have been following you for years but for some reason I have never seen this video. I knew you have had alot of medicall stuff, but not that you have ME/CFS. I recently got diagnosed myself after been strugglig for many years. I see alot of myself in this video and i am glad you shared. Some days i am barely able to speak because of my fog. today is one of those days. thanks for sharing
Thank you Jessica for being so honest and vulnerable. 💖💖
Thank you for sharing your story and experience!! :) you and your wife just seem like the loveliest of people... my gf and I watch you both quite often and we have learned a lot from your videos 👍🏽
I am currently unable to sleep due to both a cold and a recent flare up of pain in my arms and legs. So I am just binge watching you
Hi! I just started my channel on my CFS journey and recovery and i would love it if you would check it out!
I don’t have CFS or ME but what you described about the lumbar puncture and recovering from it is exactly what I experienced! My doctors didn’t really listen to me so when I was discharged I just spent a few months at home lying flat in a dark room, I couldn’t even get up to use the toilet.
Thank you for sharing such a personal part of yourself.
I’m dealing with a particularly bad flare of my Syncope right now, which is a lot of brain fog and dizziness and feeling faint. Your videos are about the only thing i can focus on currently. Thank you.
I have chronic fatigue syndrome and I completely relate to this. Trying to go through a full day college week is horrendous
I love that you had the courage to film yourself in a fog.....you should do these more often nowadays. 8 years on. Im curious if you still experience this. I myself would never film let alone post on the internet one of my bad days...which look considerably different with TBI.
Oh honey! I so understand! I can’t stand chronic fatigue, but brain fog I dislike more. The cause for me is Hashimoto’s. They are symptoms of the Hashimoto’s for me. I’m sorry you go through this. You’re such a beautiful person!
I love that you choose to do this in a brian fog it taught me a lot about your condition thank you😊
I am so sorry to see you in this state, but I completely understand where it comes from. I probably have POTS, but definitely not ME/CFS. I've had the fatigue and palpitations (clinically proven, not anxiety related) for decades. After I knew I could not work regularly anymore, I did a 2-month stint for the EU Commission as a researcher. The research was easy. I could do it in a half the time allocated, but it still destroyed my health. My intestines completely shut down and I started losing my speech. Taught me that working is the shortest way to killing myself.
Thank you for this video.
I liked the kissing cows...
I’ve been watching a bunch of you videos last month or so. There is really something special about this one though.
Thank you for your strength and courage to show us what it is like for you and i definitely understand how brain fog can be so debilitating. I live with ovet 12 chronic illnesses and some of them cause brain fog. Sending hugs to you
Seen many people comment that this sounds a lot like Fibromyalgia, so I hope this helps...
I was diagnosed with ME/CFS about 15 years ago & for a few years now I've been told by medical professionals that ME/CFS & Fibromyalgia are indeed same thing. It just depends on, when you are diagnosed, whether your complaint is more fatigue (diagnosis = ME/CFS) or pain (Fibromyalgia), though of course, both conditions include fatigue & pain! More recently I was in hospital for something unrelated & the doctor treating me had just been on some further training courses about ME/CFS & Fibromyalgia. He told me they are now officially considered the same condition & call it 'Chronic Fatigue Syndrome Fibromyalgia'. It amazes me that I found this out by chance & how many people (even with the condition) don't know this (even many medical professionals are ignorant of this condition). I think it's because it is still constantly being learnt about.
Sorry this was so lengthy, but thought it might help someone out there ❤
Hi! I just started my channel on my CFS journey and recovery and i would love it if you would check it out!
@@ShannonEmelia Thanks, I'll check it out 😊
God bless you Jessica! You could not be more dear.
They are literally just an inch from being diagnosed with this... and I am happy to have words for it but hate the condition. Being tired all the time is exhausting... thanks for sharing this and giving me the understanding that I'm not crazy...
I have ME for the past 14 years after Epstein-Barr virus. Thank you for making this video. You are absolutely beautiful and adorable!
This is A great description on what cfs is like. I got this feeling so bad that they thought i might have had a stroke. I just told my husband i was confused and scared..but he didnt understand why i was so conscerned. I didnt know if it was blood sugar being too low or what but now that i have cfs diagnosis and heard your video i am not so scared. If there is any tips you have of coming out of it id appreciate it. I think bc i learned to pace i have not suffered with that feeling quite as much. Bless you honey..and thank you for sharing.
I give you courage for sharing, way to go!
+Greg Strasburg thank you xxx
The irony of this is I've been wanting to watch this video for ages, since I have CFS. But I've just never gotten round to it bc I'm so exhausted
Thank you ,I've just been diagnosed with ME, this really helped me feel not so alone.
Hearing this description on what CFS is like makes me cry because these symptoms and things you go through are similar to what I go through. I don’t know if maybe it is because of my Hypothyroidism (that my doctors first thought was Fibromyalgia) or my mental disorders, but I relate quite a bit to this because a lot of people like to try and hug me or rub my back gently and it would hurt a lot to where I wanted to cry. I wonder what I should do about this and hope someone here can help. Even though I have thyroid medication I take, it never fully helps with my pain. I try to get a “good night’s rest” and even if I slept for 12 hours, I still always feel exhausted and ache.
I know how you feel, I'm going through cfs/fibromyalgia and HypERthyroidism. I've been lucky enough to find a Dr who understands my condition remarkably well, although he's private. (check out his work he's called Dr Perrin.) He's fighting for changes in how ME is diagnosed and understood as he's found physical signs that show a person has it. Never give up. You're not alone.
My brother suffers from graves disease and it sounds like your case. I have anemia and have a lot of similar symptoms.
I’ve got hyperthyroidism and I think I’m experiencing cfs I’m constantly exhausted no matter how much I sleep and I’ve got horrible pain :/
I also have hypothryroidism, have had it since I was a kid, and even when my meds keep my levels in check, the exhaustion and pain never really go away, so I've been trying to get my doctor to help me figure out if something else is going on, too. All the symptoms you describe, (and more) match my own experience.