When people are like "Do exercise, it'll give you more energy" and like nope, I'll just get too tired to do other stuff and get a headache. I want to be able to exercise, nagging me won't help...
Oh my god yes. Exercise will almost literally kill me. I will get dizzy and weak and basically, completely unable to stand up, if you mention that again, I’ll imagine murdering you, cuz god knows I could never conjure the energy to actually hurt anyone. 😅😑😭 exercise will not fix me, damnit!
@tiadeets I am tired every day, all the time. My body aches, and I try to do yoga to make myself feel better, but even then I usually don't because I'm so tired and sometimes I feel muscle weakness when I do, and this is yoga. YOGA. Low impact.
That and the "Sleep hygiene" speeches and interrogations, like Hunny, tell me one more time that I can get sleep aids to solve the issue Ima start throwing hands.
I can't even begin to understand how you go about daily life with the most positive attitude while dealing with so much... I barely have a cold and I'm complaining! Its very humbling to see your strength. Much love and admiration.
As a RUclipsr living with chronic fatigue myself... I’m so blown away by how much you’re posting this December! You’re freeeeaking amazing and inspire me ^_^ and thank you for this informative video - I really hope more people will understand it! It really helped me feel less alone. I was like “yes yes yes” to everything you said haha.
It's not crazy, the tiredness is so real! haha Thank you so much for watching my Vlogmas, it makes me so happy to read that it is helping people feel less alone. Jx
I hate the word lazy. If I had the energy, trust me I would take a shower. If my muscles and joints and head didn’t hurt cause I was so fatigued I would go to the Christmas party. My fatigue comes from vitamin deficiency caused by something they haven’t found out yet so it’s hard to correct. Fatigue is hard to explain and you did very well.
You should ask your doctors check for "Secondary adrenal insufficiency". In some ways it sounds very similar especially the lack of energy. The pain in joints, headaches and vitamin deficiency all sound suspiciously familiar...
My parents considered my pain constant in my joints and my complaints about writing and reading down to attention seeking, as I was a quiet child and had an very high maintenance sister which took up most of my parents attention. Junior Arthritis, Dyslexia was the diagnosis . Actually my joints were so bad when I was 8 years old, my ankles dislocated (I jumped off a small stump) when out on a family walk. Then just thought I was moaning so made me walk around in my wellies for an hour after before taking me to hospital and getting diagnosed. My dad still crys over it till this day :< If your hurting or have difficulties make your voice heard, don't be like me and shut up and just deal with it xD
Wish my teacher knew... Just cried for three hours straight because my teacher doesn't understand that I can't do as much as the other students and told me that this is no internet school, so she can't just give me a grade when I'm not in class... I have no idea how I'm gonna survive this year... (CFS here)
Creative Name Sending you hugs. I hope you can talk to someone at school about this, you sound very fed-up. You are entitled to being given reasonable accommodations and I hope things smooth out for you xxx
Are you in the US? There's a disabilities office or some sort at every school. You can get documentation of your condition (I got mine from my psychiatrist for anxiety, and my doctor for fatigue/pain) and then the staff help you write up a document that all of your teachers sign, stating your needs based on your disabilities. For me it was extra time for assignments, no grade docking for missing class, being able to record lessons, etc.
Creative Name I'm not sure where you live but I live in New Hampshire in the United States and here you can home school online. Do they not do that where you live?
for me personally, my chronic fatigue is like a sudden drain in energy that hits me like a ton of bricks at any point of the day, generally late afternoon, and i just have to get myself straight into bed before i have so little energy that i can't even move. at times like that, all i can do is rest and hope that i'll eventually have enough energy to make myself dinner. it also gets worse with stress, as stress itself is very energy consuming. i think it's just a part of whatever chronic illness i have (which my doctor is now going to refer me to get blood tests for, so i can hopefully find out what it is!)
Its like when people think that depression is your just unhappy or sad and you can get over it. Your hair always looks amazing, just call it o'natural :)
I hate it when people say crap like "Why are you depressed, there's so much happiness in the world?". It's like someone saying "Why do you have asthma, there's so much air in the world?"
I've had CFS and mental health issues for 8 years, and exercise has been the number one thing I've been told to do to help/cure myself. I've tried to explain that CFS puts a damper on my ability to exercise, but its a really difficult hurdle to get over. Thankfully, recently, my main health care professionals have realised that my "exercise" might just be stretches on the floor or walking slowly, just making sure I'm moving at least a little. Also dealing with being called lazy (even by myself) is quite a struggle. The worst/weirdest reaction I got from someone I told that I had chronic fatigue was that they wanted it so they could have an excuse to spend all day in bed. *facepalm* If I'd had the energy I might have hit them. Thank you for making this video. Reminding me that there is hope with this is so necessary. Merry Christmas xx
I just got home from a doctors appointment and just had a total breakdown because I'm so tired of being in pain and not getting any help. Thank you for uploading your videos, they comfort me. A lot.
Don't give up! I swear we've all been through it. Eventually you'll find a doctor that doesn't immediately judge you and finally gives you an answer that helps you move forward (or at least acknowledges how you're feeling as being REAL and IMPORTANT). And don't be afraid to do your own research. Doctors know a lot, but they can't know everything. You know your body best. If you stumble upon something that you think might be important for your condition, bring your research with you!
I can relate to this a lot because I feel like depression is a lot like fatigue the way you explained it. there is a limit to my energy and what I can accomplish in a day, and sometimes I do hit a wall, and I just collapse in bed for hours/days. Thank you for the bit at the end, I wrote it down and will look at it when I'm having a bad day.
very true! my m.e was misdiagnosed for a long time because i ranked high in the hospital's depression questionnaires, but it turned out my depression was a side effect of it caused by fatigue & post exertional malaise
Very same! The doctors chalked it all up to depression, but in reality I also had ME. The depression was almost protective in a way? Because I wasn't motivated to overextend As much. I was still overextending and my capacity gradually shrank, but it wasn't rapid. When my depression improved dramatically and I started having motivation to do more things, my ME quickly escalated, which is how I finally figured out that I had it. Mild-moderate ME plus mild-moderate depression (in part due to bewildering loss of capacity) can masquerade as severe depression. Now I am not particularly depressed at all, but I still score super high on depression screeners, because I am bed bound with ME. Doctors need to get better at differentiating ME from depression and catching it while it's mild-moderate. Because otherwise they just keep telling patients to walk and exercise more, until those patients have severe-very severe ME.
I've likened CF as being in a vat of molasses or cement and trying to move while having a weighted blanket tightly wrapped around me. And rather than a well oiled machine running my brain, there is a slug on a hamster wheel trying to get the same energy output.
Hey Jessica! Thank you for the super informative video. I'm a full time carer for my partner who has recently been diagnosed with Chronic Fatigue (Syndrome) and I would love it if you could talk about the bed exercise routine you mentioned. She loves exercise but obviously it isn't really something she can do much of. Thank you for all the videos you make, they make my partner so happy and as a carer for her they are really helpful. She can't always articulate what she wants to say (due to brain fog and fatigue) but we now can communicate more about her symptoms and needs by saying things like "remember in Jessica's video where she spoke about [insert thing here]? That's how I feel now." for example.
Oh you sweet, lovely, thoughtful lady! thank you so much for the phrase "living a slow life". I have developed a similar personal philosophy to aid in coping with stress and mild depression and have never been able to describe it well. "Self care" tends to be taken to mean pampering oneself, and all the other terms seemed to suggest some kind of religious conversion rather than a practical change. I used to feel I was failing to live up to my potential when too emotionally exhausted to be creative, active, or even sociable, because there wasn't a physical barrier preventing me from doing so. Realizing I can be at my personal best using my energy for what's most meaningful to me, and disregarding other people's ideas of fulfillment have been key. I've found stability and happiness through compromise rather than constant frantic striving and its been life changing.
I love that you differentiated the depression tired and chronic fatigue without writing off the emotions from depression. I never had chronic fatigue, but I've known people who do and others try to dismiss my depressive state with "well she has chronic fatigue and she's able to get up." There is no hierarchy in any of this. We can both feel awful in different ways at the same time. We shouldn't tell people to get over something because others have it worse. It helps no one.
This video made me legitimately cry, I've been struggling a LOT with chronic fatigue right now- I had grand plans to become a physicist, but I'm over halfway through uni and barely able to keep up with three classes a term. But your video helped so much, you're so reassuring, I just want you to know that your videos mean so much. Thank you.
CFS is having a pile of clothes to fold, a game night you DESPERATELY want to go to, and need to pee so bad you might explode but being unable to lift your arms much less stand. It’s laying on your bed and feeling like your muscles are too tired to stay attached to your bones. It’s having people call you last for taking the elevator even though you were proud of yourself just for pulling your pants up. It’s buying a soda bottle, asking someone else to open it, and using a straw because you can’t lift the bottle to your lips and having someone call you dramatic for it.
"Your bones are tired." OMG--yes! So validating to hear someone else describing what everyone seems to think (including me) has been all in my head. For seventeen years.
I remember when I got into school (age 5) I seemed a bit more tired than my peers. But, it got atrocious in high school. My friends actually got to the point they'd say "how are you? ...except tired" because that was my answer. I was so tired I literally could not comprehend other states of being. Then I got a blood test that showed I'd had Epstein Barr sometime my freshman or sophomore year of high school (the first 2 years out of 4). Apparently, most people just get a bit more tired for a bit. But I'm pretty sure I had it for several months. That fatigue has never fully left. It's awful. I can push myself a bit, but the next day I can't get off the couch. Possibly longer. I'm actually currently on the couch for day 2 in a row, feeling so exhausted that I am seriously wondering how I'm going to drink the water that's next to me... 😢 And trying to figure out if I caught a bug or just wayyyyy overdid it.
"The best thing that works is just living a slow life"! Wow, Jessica, that's it! That's such a great way to express what it means to not have much energy! I so appreciate your wisdom and positive outlook!
Thank you for this!! Could you do a video about how you deal with people thinking you were or are "faking it"? My friend has this problem and we were just talking about how difficult it is to be left alone with your pain when you can see in other people's faces and even doctors that they're not taking your seriously, or wondering if you just like the attention. I really almost wish all disabilities could be seen, so people wouldn't have to deal with this extra layer of pressure.
I remember as a kid in school, everyone (EVERYONE) called me fat and lazy because I would get my mum to pick me up instead of the 15 minute walk home (for an able bodied person). I just couldn't articulate this to them. I would sob for the entire walk because the weight of my bag on my back and my body on my legs was too much. I practically had to drag myself home.
Me when energy goes away "man down man down!! Sleep time. Recharge alert. *alarm bells*" Having literally no energy is quite possibly the worse thing about chronic fatigue. Trying to explain its not laziness is so hard. Especially when you want to do something and just cant.
Lazy is "I don't want to cause I don't feel like doing that thing" Chronic fatigue is "I would do that thing but I can't because that takes too much energy. I am so tired that can't happen."
I've had such a shit day my depression hit me hard again and your end little speech just made me cry. In a good way. You're so positive and supportive of everyone and I can't even be that way with myself. I don't know how you do it Jessica but thank you 😢❤
I don’t usually comment on videos but this has hit so close to home it’s in my living room. I’ve been living with chronic illness and fatigue for three years (where it’s bad enough to be disabling) and the lack of energy is a constant frustration. But you are so right! Having a different body or a different style of life is not only okay, it is amazing because it makes you who you are and you are amazing. I’ve definitely lived the dark-room-dont-speak-to-me life and though I am better now I never forget what that was like because it’s a reminder that when the wall hits- STOP! Pushing the wall does not move the wall. It just makes your arms tired. Lots of love from California, I watched you almost daily for my reminder that it’s okay to be me and take things at my own pace. Cheers! ❤️
You describe ME and me and all the other illnesses like no one else. I can't stop watching your videos. You have a clever and articulate way of saying and describing. I love it. When I was young, my mom joked that me and my sister have a sleeping disease. How right she was. I still wasn't diagnosed until 2018/2019? who knows. I even thought I was so lazy, and constantly asked myself why am I so tired and lazy. I just wanted to feel good as all the other 20 somethings, and teens for that matter. Looking back I probably had pretty severe depression and anxiety.
This video seems very apt for me today. I am currently watching this video on my phone propped up next to my computer because I am too exhausted to open my computer. Even writing this comment I'm using speech to text on my phone because I am too tired to type. When is because I have an autoimmune disease, so my body is using all my energy to fight itself.
Thank you. Just thank you. I've shared this video with friends and family who just didn't get it. I'd been a ballet dancer as a child and taught through my teens. No one got it when I feel apart. 20 years later they still think of me as lazy, a quitter, someone who won't do anything for herself and complains all the time. If I say I can't do something, they say I'm whining. I get emotional and notice I've now thrown all my spoons at them and can only go back to bed. You're my good will liason. You're able to get through to them when I failed. So, thank you!
Good to clarify the differences anyone might have with their conditions, syndromes, temp or constant pain/fatigue, etc. I hope to be more considerate of this issue and remember, some conditions/symptoms can be unseen so I will try to judge less, be grateful more. Your condition is so profound, I'm truly sorry you have these conditions. You keep going and that is remarkable and the BEST approach. You share to help others and I know it does. Thank YOU.💖
Anybody else watching videos and as soon as "your" disease gets mentioned youre like "heey!thats me! They are taking about me! Wo hoo" and them you realize its not really a thing to be happy about bc you have a chronic illness, but at least you were mentioned in some kind of way by a person somewhere that doesn't know you, and that kinda makes you happy but doesnt and its weird.
I always say to people that whoever created humans looked at me and went, “Oh yeah. This one’s gonna be real special. Extremely sick and even more extremely stubborn.”
I don’t think I could adequately express what this has meant to me. It has been so many years, no one has made me feel understood. It is so incredibly isolating. Thank you. Deeply. Your videos have brought a light into my life in a significant way. Merry Christmas. Thank you.
I also have MCTD and I just sent this to like 5 different people in my life who complain about my being "too tired" to do things they deem easy. Thank you for all of your work and all of the content you put out, it's a genuine joy and your honesty and openness is a gift.
My mum has chronic fatigue and everyone thinks she is just fat and lazy so she now tells everyone she has M.E be uses everyone takes that more seriously. The reason my mum got M.E was because she was doing too much work being a full time mum to me and my sister and a full time carer for my nan. She's loosing weight and having more time to her self which helps
Hi Jessica! What do you think about creating, maybe, a monthly Q&A so you (or you+Claudia) can explain most of the frequently asked questions from your followers? Like an #AskJessica or something like it
Oh my lord Jessica just record some inspirational audio books already! 😭 SO MUCH of what you said goes with depression and mental illness as well and I swear I cried watching this. Love your heart.
Crying watching this. Your life mirrors my life so much. I’ve been beating my head against the walls to be heard, seen to no avail. For easily 8yrs now. It’s beyond frustrating and heartbreaking. And I feel all alone always. With no one who understands but feeling guilty bc I’m not enough for anyone or bc I can’t do more though I fight and fight for that glimpse of energy and push till I can’t habfle it just for one normal memory. Hugs to you and thank you for sharing.
I have no words to show my admiration for you. Frankly, I cannot even imagine your life despite any explanations, but that's okay. I simply want you to know that you're my constant inspiration. You do inspire me not to miss a single moment of happiness in my life, to explore it and, most importantly, be openminded. Thank you!
I have 30 things on my to do list daily and hearing someone else doing 10 things helps because getting 10 done is a very good day This has me bawling crying. Ugh, Jessica thank you. Yeah I've collapsed in the street in public on my own and been stuck a lot in my life including when I was kept homeless by the council (long very sad story). Thank you ❤️
You are honestly such a big support to me, everyone else that I know that has chronic illness is very much of a "my horse is bigger than yours" type of person. It's great to just relate to someone without comparing
The marathon analogy is apt. I used to be a rower and remember that moment the pain and tiredness would hit during the race. It is exactly what I now feel every day. This will now be my go to analogy.
I know this is an older video, but I really needed this today. I have hEDS and today I had a fatigue crash at work in front of my boss and co-workers. It was really embarrassing since I get muscle spasms specifically in my face. Thank you for reminding me that I'm fine as I am. ♥️
You are so seriously inspiring. I am not even disabled in any way myself (perhaps besides depression which can get out of hand) but you have helped me mentally be so much more positive. Your attitude is incredible. Thank you so much Jessica and Claudia!!!
Thank you so much for this vid. I came to chronic fatigue when i was a young adult, but i had to just accept my conditions, and i learned to be choosy about my energy expenditures. My mother was my ally, and helped me. I am much older today (i'm 61) and am rarely "floored" by my CF but sometimes just have to say no to doing anything. One nice part of growing older is that it clears out the non-friends and others who drop away. I finally have the disability status i need, and now have a carer help with a great many things i cannot do--washing, cleaning, etc. Your videos are so helpful and wonderful!
I've got two chronic illnesses, plus anxiety and depression so basically just existing takes it out of me. You said a few things that really made me feel better about myself, particularity the exercise bit. My dad is always going on about how I need to exercise. (That's literally his cure for everything. I could lose a limb and be spurting blood everywhere and he'd be like 'but have you tried exercising??) But anyway, thanks
Emily Graves that seems to be loads of people’s go to! I’ve been to a doctor who said it must be sugar! despite me rarely having sugar! I’m often not having more than one meal a day so it’s usually very healthy
FlyingWonderGirl ah yeah food/diet is another go to for people! I had a doctor tell me that my terrible stomach pains were probably because I simply had a “sensitive stomach” and he gave me a list of foods not to eat, despite me telling him that I basically didn’t eat any of the foods on the list. Long story short, my “sensitive stomach” turned out to be Krohn’s disease and autoimmune hepatitis. Both of which I ended up basically figuring out through Google before any doctors got around to making that diagnosis!
Tearing up watching this because I finally have someone I can relate to and know I'm not alone or 'lazy' like I've been pegged my whole life when I'm just poorly
I’m randomly really emotional about hearing someone else describe what I feel. Chronic Fatigue Syndrome stole my teen years and has affected my daily life everyday as an adult. To hear someone else describe it and know they feel it, too... it’s much more powerful than I expected. I feel heard. I feel seen. Thank you, Jessica.
Watching in 2020 while suffering with chronic pain, fatigue and fibromyalgia. The end of this legitimately made me cry because you got it and said things that I apparently needed to hear from someone other than myself. Thank you. Your videos have been helpful just by feeling seen and understood. Not with worry, or "man that sucks", or yeah I feel tired too. Just that it's ok, it's there, and you can get through it.
Always full of such wisdom, kind heartedness and patience. I personally do not suffer from CFS, but I find it so very insightful to hear as to how you adapt having it into your life to make it work for yourself. I see such a strength and warmth in you. I honestly adore listening to you speak about anything and everything, but truly love to hear you talk about topics such as this that bring forth your wisdom. Much love
It really goes to show that you have a choice in your attitude! She has so many health struggles and still is the sweetest woman with a beautiful heart
This is my life. I have Rheumatoid Arthritis, we are suspecting MCTD, chronic pain, and severe GI issues (mush like yours Jessica). I am either so sick with severe nausea and vomiting and other fun stuff, with moderate constant pain or days when my GI issues are minimal my joints wake up and start screaming in pain. I often wake myself up in the night crying due to the amount of pain I am in because I cannot sleep in any position without causing severe pain. Sleeping on my sides makes my shoulders and hips flare badly. Sleeping on my back causes my severe SI/lower back pain worse. I am in a constant state of exhaustion and pain. I am fighting to get help. I now have to travel to Cleveland Clinic in Ohio which is 13 hours away (driving). I will have to fly, by myself with using a walker and navigate this massive medical system on my own. I just want help and have been treated so poorly by so many Rheumatologists that I have little hope of any help. I love your videos. They help me so much and feel not alone and more importantly NOT CRAZY like a few former doctors have said. My biggest cheerleaders is my PCP, Oncologist, and my therapist. Thank you so much for all you do.
Oh wow, I didn't actually know that there was a difference between Chronic Fatigue and Chronic Fatigue Syndrome (thankfully I haven't been telling people I have CFS, just Chronic Fatigue. But mine's due to accident induced head trauma, digestive disorders (my body expends too much extra/unnecessary energy trying to digest because it doesn't do it properly), and mental illness from said brain damage. I've never had joint pain associated with mine, though I get muscle fatigue extremely quickly on top of brain lethargy. But I have small bursts of energy, the BAM! I'm out (whether I've done anything physical or not). Can't move, hurt, and good luck eating anything or remembering to brush my teeth (or having the energy to brush my teeth). Oof, this one's hard to figure out...I just don't want to offend anyone using the wrong terms! As always, I'm in awe of you. I don't know how you can function day to day, much less look as marvelous as you do. Haven't washed your hair in 5 days and it still looks that lovely? My hair would be a slick straight greaseball by Day 2. #hairgoals The beginning of the video was super adorable. You make me want to want to do videos like this about disabilites (but obviously not copy you exactly, as that'd be rather rude. You're just so inspiring.
I've thought about CF a lot in the past few years, because I've had these long episodes of just being so tired and exhausted and nothing has helped. I haven't always been like this - my fatigue got really bad after a nasty flu - so I've been really frustrated with the brainfog and not being able to function like I used to. My symptoms are nowhere near as severe as yours, but this was still a very informative and relatable video. 💕
"It's not always, it's not constant, things will change" God, I just burst out crying, that was- that was the kindest thing, and I needed to hear it so much, and I cannot tell you how much hearing that meant to me.
Thank you for this, Jessica. "Living a slow life" is a terrific concept. Two of my nieces live with the chronic pain and fatigue of MS. I live with epilepsy, which not infrequently landed me helpless on the floor, and clinical depression, which (along with the anti-epileptic drugs) still sharply limits my daily energy. I think we all struggle not to judge ourselves as others' have done. You're a model of accepting the truth of a situation, taking care of oneself, yet still finding love and happiness. Thanks very much for sharing your thoughts and experiences. You bring such grace and perspective to all of the topics you address, and here it is especially appreciated.
It’s great that 18000 people have watched this already! 👍🏻 I have more classic ME in that I was normally active, got glandular fever and I can remember the moment I first felt that type of ‘fatigue ‘. It wasn’t like anything I’d experienced before, it wasn’t more tired it was qualitatively different. Though I do fall into the habit of saying I’m tired when that’s not really what I mean and doesn’t aid clear communication. With ME there are different courses of the condition though and not everyone has a distinct onset. It quite often goes with EDS which is a lifelong issue, and the point at which EDS becomes EDS and ME (and POTS?) I could well imagine might be less clear than getting ME from an infection when you were perfectly healthy before. Heritability for ME is 50% and potentially higher in children who get ME. It could be possible that the trigger infection was something like a minor cold when you were tiny (as speculation). Though always worth looking for alternative explanations, I think it is sometimes a lazy diagnosis when doctors don’t want to look for rarer conditions. I think it is quite hard to know what chronic fatigue feels like with other conditions if you have ME because it’s so tied up in also feeling malaise/sick eg people who have depression also have chronic fatigue. I’d be interested in people’s description who don’t have ME but have chronic fatigue.
I am so so glad I found your channel! I've been having test after test to determine if I have MCTD (yup...I do), and as much as people want to "understand", and help... they just don't realize how deep the fatigue and pain are. And a bath with epsom salts feels soooooo good, but I also have Autonomic Neuropathy and can't control my body temp either, so between the effort to draw a bath and the chance I will suddenly be burning up and have to get out...it becomes a time and energy waste. Your positivity has helped me greatly, and I'm learning it's ok to let my husband help. Thank you for being amazing and posting videos like this! We're getting very close to 🎄!! Fingers crossed for 🌨☃️ for you and Claudia as well as here in Indiana!
I don't have chronic fatigue, but I do have chronic depression and regular migraines and this really resonated with me. It's hard to remember to just do what you can and not be upset that you can't do more. Thanks for the video (2.5 years late)!
Hi Jessica, I first started watching your videos because they looked so bright and cheery. When you started talking about your disabilities, I was even more inspired by your resilience and beauty. You and Claudia (and Walter and Tilly!) really help to keep me going on bad days. Thank you for everything. Happy Everything.
I suffer from depression and migraines and have been in treatment for 20 years but always sort of white knuckled it through schools and jobs. Just recently asked for accommodations at school for the first time. It was, like, a thing for me to admit that I have disabilities that need working around in special ways, but it's a relief and I'm so grateful. And I think your wonderful channel has helped me combat my self-stigma. Thank you for your bravery and disability-positive work. 🦄💜
Thank you for posting this, I have chronic fatigue and depression and this just really helped. Because sometimes my family and previously school didn't understand that there are times when I just can't do something, and I'm never going to be better. It was nice to be validated and and assured that I'm not just being lazy, or that I should be try harder. So thank you for that.
im looking everywhere for your exercize routine. im struggling with EDS, chronic migraines and i dont remember a time when i wasnt exausted. my confitions have suddenly worsened throughout these past 2 years to the point my family cant handle it anymore. "exercise!! move more! go outsideee get som sunlight! you dont move enough your lazy!!!" im so sick of it.. thank you for sharing your life with us. i truely love your Voice
I am so glad you shared this. Not only could I learn about what people who are chronically fatigued experience, but I learned how to more accurately describe what is going on with me! I am chronically fatigued, but it’s basically mild. I do not feel like I’m going to vomit and cry at the same time, and I can force myself to get a shower even though it is tiring. I have MALAISE all the time. Thank you. Now I can use this to describe what is happening (and what is not happening). Maybe I’ll get a diagnosis in less than a decade now.
My sister can tell when I hit the wall now, and doesn't try to push me past that point, in part because she's learned pushing me beyond that means I'll have a migraine for the next two weeks and not do anything. Also, finding a restaurant I can order from has been very helpful. Sometimes I'm too tired/in too much pain to cook or prepare food, but I need to eat or feel worse. That has been a huge help.
Your description of of M.E. set off a worrying light bulb in my head. I've been feeling pretty unwell for a while now and after looking up more of the symptoms it does seem like it lines up pretty well with what I've been experiencing. It's not a perfect fit so I've got my fingers crossed that it's something more treatable and/or less chronic, but it's definitely something for me to keep in mind.
I've been diagnosed with ME for lack of any other explanation and I really appreciate your explanation about the difference between ME and chronic fatigue, because it's helping me sort out the complete chaos that's my life with like 10 different health issues
Thanks for addressing exercise! It's a tricky topic if you have fatigue on top of other conditions that really benefit from light exercise. Try and find a physical therapist that frequently works with the elderly. Because we are physically like, 88 lol. Isometric exercises and very gentle motions are best, in my personal experience.
The most important thing I learned was the difference between Chronic Fatigue and Chronic Fatigue Syndrome and learning that they are not the same thing. I would love to hear more about M.E. because you explain things really well, like only a really good teacher can. I'm generally would love to hear about your time in psychiatric ward, partly because I'm curious to be honest, but partly because when you talk about your invisible disabilities and your teaching about them to us your audience (and anyone who watches) I walk away learning and having deeper understanding as to what it is and being able to tell that to someone else. The bit with your body constantly telling you "HEY! Did you know something is wrong?? Something is really wrong here!!" " YES I KNOW BODY!" was hilarious. Accurate summarization there. Super super funny.
I completely understand about knowing deep inside yourself that something, SOMETHING is wrong with your body. But it doesn't show up on all the tests the doctors do, it's not on the xrays or any other form of testing. But you KNOW something is wrong. The doctors keep saying, it's all in your head! How humiliating! Watching this video brought up all kinds of negative emotions for me. But it also gave me new knowledge to begin to reframe those past experiences. Thank you Jessica!
I probably do have ME, but with other diagnosis under my belt, getting THAT diagnosis isn't likely. My start point was December, Senior year of high school, when I contracted mono. After 3 months of battling, I came out the other end wiped out and I've never recovered from that exhaustion. When I relapsed with Mono 6 years ago, it got even worse. It was then that my other illnesses really kicked up a notch and Disability was starting to look like a reality. Ton of fun... I could ramble for HOURS about it. Either way, THANK YOU for making this video. I'm saving it to send to relatives that are "just looking out for me".
I'm so glad my roommate introduced me to your channel! She wanted me to see how you're able to keep such a positive attitude even while going through several of the same issues I am. I've been going to doctors for years and have yet to get a diagnosis for my chronic exhaustion. I keep being told that I'm just lazy or a hypochondriac, when for a 2 1/2 year period I had daily migraines and couldnt remember how to walk or write, and I would exhaust myself even trying. So much of what you say gives me hope and relief I'm not alone, and maybe I'm not just incompetent with life. You are a wonderful woman and I look forward to more of your videos.
When I was diagnosed with interstitial cystitis (or painful bladder syndrome) two years ago, I had a mix of sadness and relief. I’d been doing so many things to cope, never realizing that most people didn’t have to face that same hurdle each day. Sort of validating, but also... sad, if that makes sense. Your story about lying to your friends to hide and rest made me think of that feeling. ❤️
I really relate to this. Chronic fatigue is one of the symptoms of my chronic illness and I spend so much time being tired and frustrated with being fatigued. It really made sense to me what you said about those of us with chronic fatigue running out of eneergy and that kind of just being it.
I honestly learn so much from your videos, Jessica. Thank you for sharing so much with us. Your channel has completely changed my world view regarding disabilities, and it was such an essential change. You're awesome!
your videos help me so much, im in the middle of diagnosing my chronic pain, they told me it could take a year or more for a solid diagnosis and treatment plan. ive never seen a video describe me so well. my mom askes if i got a good night sleep, i say yes and she asks why im still tired then. drooling in class and thinking im a weird freak for it, never realizing it could be reated to my condition. staring off into nothingness for hours at a time, just tired. especially the copy and paisting texts about my day. thank you for being so open about your disabilities, it help in so many ways. now i have something to talk to my doctors about.
One of my best friends suffers from chronic fatigue and like this helped me understand her experience, like I kind of got it, but I couldn't really imagine exactly how it must feel, besides just the tiredness. So thank you so much for sharing your experiences :)
"...I will stab them in the eye with a spork.... " this is why I love you. Lol... I usually put for the "Hysterectomy with a rusty spork" but eye stabbing is good too.
I am 15, almost 16, and i have a lot of chronic fatigue symptoms. I am also in the process of getting diagnosed with ehlers danlos syndrome, which i know is comorbid. I am also autistic but that's not really relevant. I have had chronic fatigue symptoms for about a year now and it gets hard to hold my head up sometimes. But it's not always visible to other people since i prioritize hygiene over just about everything else so I don't seem unable to care for myself. However, I have a very difficult time making myself food and getting out of the house. I don't go outside most days, except on weekends when I have church and then after church I can barely move for the rest of the day on bad days. It's really hard and I wish I had an actual diagnosis.
I know this is an older video but having just watched it, it really spoke to me. I'm not sure what my fatigue and exhaustion is but the last few sentences you spoke felt like you were talking directly to me and I cried because finally someone understands. Thank you Jessica.
My mum wanted me to thank you, for helping her understand my illness. she now knows a few more ways to help. You explain things so well and me and mum love you!! Stay being you!! You are frickin awesome!
Thank you very much for these vids. I have experienced fatigue for over a year now, linked to a heart condition, and watching this particular one made me realize what I felt was beyond common tiredness.
as odd as this is to say; it is so nice to hear someone else's story . i am so sorry you have to go through this . you inspire me so much . i was dealing with chronic fatigue forever . i was so frustrated . my doctors didn't think it was much . it took me over 2 years to be diagnosed with ME/CFS . i now have a great medical team that helps me out so much . i am getting infusions for my POTS which really helps my ME/CFS . so happy i stumbled across your channel
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When people are like "Do exercise, it'll give you more energy" and like nope, I'll just get too tired to do other stuff and get a headache. I want to be able to exercise, nagging me won't help...
exercise bring endorfins and a lot of good things....if your healthy...if not! Hell No!!
Oh my god yes. Exercise will almost literally kill me. I will get dizzy and weak and basically, completely unable to stand up, if you mention that again, I’ll imagine murdering you, cuz god knows I could never conjure the energy to actually hurt anyone. 😅😑😭 exercise will not fix me, damnit!
@tiadeets I am tired every day, all the time. My body aches, and I try to do yoga to make myself feel better, but even then I usually don't because I'm so tired and sometimes I feel muscle weakness when I do, and this is yoga. YOGA. Low impact.
@@opulentzinger Yes, same here! Yoga can help me - IF I can muster up the energy to do it. Sometimes I really just can't, though.
That and the "Sleep hygiene" speeches and interrogations, like Hunny, tell me one more time that I can get sleep aids to solve the issue Ima start throwing hands.
I can't even begin to understand how you go about daily life with the most positive attitude while dealing with so much... I barely have a cold and I'm complaining! Its very humbling to see your strength. Much love and admiration.
Yashwanth Vinod ♥️
As a RUclipsr living with chronic fatigue myself... I’m so blown away by how much you’re posting this December! You’re freeeeaking amazing and inspire me ^_^ and thank you for this informative video - I really hope more people will understand it! It really helped me feel less alone. I was like “yes yes yes” to everything you said haha.
Oh my god “MY THIGHS FEEL TIRED” I feel crazy when I try to explain these things thank you so much for making me feel less crazy hahaha
It's not crazy, the tiredness is so real! haha Thank you so much for watching my Vlogmas, it makes me so happy to read that it is helping people feel less alone. Jx
ANNIKA! My two favorite people who knows what I'm going through. I love you both
Same 👍👍❤
Yep... This one was hyper super energetic & Theatrical. I hope she'll keep this energy flow
I hate the word lazy. If I had the energy, trust me I would take a shower. If my muscles and joints and head didn’t hurt cause I was so fatigued I would go to the Christmas party. My fatigue comes from vitamin deficiency caused by something they haven’t found out yet so it’s hard to correct. Fatigue is hard to explain and you did very well.
You should ask your doctors check for "Secondary adrenal insufficiency". In some ways it sounds very similar especially the lack of energy. The pain in joints, headaches and vitamin deficiency all sound suspiciously familiar...
I am autistic and have been accused of being lazy. No sorry my lack of showering isn't just me being lazy.
When people say that they are being lazy, I try to show them a different way because I hate it when people think I'm being lazy
Have you found your thing? I hope you have after 2 years I hope you found a diagnosis.
My parents considered my pain constant in my joints and my complaints about writing and reading down to attention seeking, as I was a quiet child and had an very high maintenance sister which took up most of my parents attention.
Junior Arthritis, Dyslexia was the diagnosis . Actually my joints were so bad when I was 8 years old, my ankles dislocated (I jumped off a small stump) when out on a family walk. Then just thought I was moaning so made me walk around in my wellies for an hour after before taking me to hospital and getting diagnosed.
My dad still crys over it till this day :< If your hurting or have difficulties make your voice heard, don't be like me and shut up and just deal with it xD
I want to show this to everyone who tries to give me "advice" to "cure" my chronic fatigue.
Wish my teacher knew... Just cried for three hours straight because my teacher doesn't understand that I can't do as much as the other students and told me that this is no internet school, so she can't just give me a grade when I'm not in class... I have no idea how I'm gonna survive this year... (CFS here)
Creative Name Sending you hugs. I hope you can talk to someone at school about this, you sound very fed-up. You are entitled to being given reasonable accommodations and I hope things smooth out for you xxx
Creative Name I feel you x please research narcolepsy i went undiagnosed for over 10 years. No one would test for it because it was rare. Also eds.
Are you in the US? There's a disabilities office or some sort at every school. You can get documentation of your condition (I got mine from my psychiatrist for anxiety, and my doctor for fatigue/pain) and then the staff help you write up a document that all of your teachers sign, stating your needs based on your disabilities. For me it was extra time for assignments, no grade docking for missing class, being able to record lessons, etc.
Creative Name I'm not sure where you live but I live in New Hampshire in the United States and here you can home school online. Do they not do that where you live?
I'm sorry that they don't understand!
for me personally, my chronic fatigue is like a sudden drain in energy that hits me like a ton of bricks at any point of the day, generally late afternoon, and i just have to get myself straight into bed before i have so little energy that i can't even move. at times like that, all i can do is rest and hope that i'll eventually have enough energy to make myself dinner. it also gets worse with stress, as stress itself is very energy consuming. i think it's just a part of whatever chronic illness i have (which my doctor is now going to refer me to get blood tests for, so i can hopefully find out what it is!)
Its like when people think that depression is your just unhappy or sad and you can get over it. Your hair always looks amazing, just call it o'natural :)
I hate it when people say crap like "Why are you depressed, there's so much happiness in the world?". It's like someone saying "Why do you have asthma, there's so much air in the world?"
@@beeparadise9631 so true. :(
I agree!
My depression is caused from my chronic pain from my cp and visual impairment getting worse every year
I've had CFS and mental health issues for 8 years, and exercise has been the number one thing I've been told to do to help/cure myself. I've tried to explain that CFS puts a damper on my ability to exercise, but its a really difficult hurdle to get over. Thankfully, recently, my main health care professionals have realised that my "exercise" might just be stretches on the floor or walking slowly, just making sure I'm moving at least a little.
Also dealing with being called lazy (even by myself) is quite a struggle. The worst/weirdest reaction I got from someone I told that I had chronic fatigue was that they wanted it so they could have an excuse to spend all day in bed. *facepalm* If I'd had the energy I might have hit them.
Thank you for making this video. Reminding me that there is hope with this is so necessary. Merry Christmas xx
I just got home from a doctors appointment and just had a total breakdown because I'm so tired of being in pain and not getting any help. Thank you for uploading your videos, they comfort me. A lot.
Don't give up! I swear we've all been through it. Eventually you'll find a doctor that doesn't immediately judge you and finally gives you an answer that helps you move forward (or at least acknowledges how you're feeling as being REAL and IMPORTANT).
And don't be afraid to do your own research. Doctors know a lot, but they can't know everything. You know your body best. If you stumble upon something that you think might be important for your condition, bring your research with you!
I can relate to this a lot because I feel like depression is a lot like fatigue the way you explained it. there is a limit to my energy and what I can accomplish in a day, and sometimes I do hit a wall, and I just collapse in bed for hours/days. Thank you for the bit at the end, I wrote it down and will look at it when I'm having a bad day.
very true! my m.e was misdiagnosed for a long time because i ranked high in the hospital's depression questionnaires, but it turned out my depression was a side effect of it caused by fatigue & post exertional malaise
Very same! The doctors chalked it all up to depression, but in reality I also had ME. The depression was almost protective in a way? Because I wasn't motivated to overextend As much. I was still overextending and my capacity gradually shrank, but it wasn't rapid.
When my depression improved dramatically and I started having motivation to do more things, my ME quickly escalated, which is how I finally figured out that I had it. Mild-moderate ME plus mild-moderate depression (in part due to bewildering loss of capacity) can masquerade as severe depression.
Now I am not particularly depressed at all, but I still score super high on depression screeners, because I am bed bound with ME. Doctors need to get better at differentiating ME from depression and catching it while it's mild-moderate. Because otherwise they just keep telling patients to walk and exercise more, until those patients have severe-very severe ME.
I love how Jessica is so open about what's going on with her. She makes people know that you are not alone in your bad times.
I've likened CF as being in a vat of molasses or cement and trying to move while having a weighted blanket tightly wrapped around me. And rather than a well oiled machine running my brain, there is a slug on a hamster wheel trying to get the same energy output.
Hey Jessica! Thank you for the super informative video. I'm a full time carer for my partner who has recently been diagnosed with Chronic Fatigue (Syndrome) and I would love it if you could talk about the bed exercise routine you mentioned. She loves exercise but obviously it isn't really something she can do much of. Thank you for all the videos you make, they make my partner so happy and as a carer for her they are really helpful. She can't always articulate what she wants to say (due to brain fog and fatigue) but we now can communicate more about her symptoms and needs by saying things like "remember in Jessica's video where she spoke about [insert thing here]? That's how I feel now." for example.
Oh you sweet, lovely, thoughtful lady! thank you so much for the phrase "living a slow life". I have developed a similar personal philosophy to aid in coping with stress and mild depression and have never been able to describe it well. "Self care" tends to be taken to mean pampering oneself, and all the other terms seemed to suggest some kind of religious conversion rather than a practical change. I used to feel I was failing to live up to my potential when too emotionally exhausted to be creative, active, or even sociable, because there wasn't a physical barrier preventing me from doing so. Realizing I can be at my personal best using my energy for what's most meaningful to me, and disregarding other people's ideas of fulfillment have been key. I've found stability and happiness through compromise rather than constant frantic striving and its been life changing.
I love that you differentiated the depression tired and chronic fatigue without writing off the emotions from depression. I never had chronic fatigue, but I've known people who do and others try to dismiss my depressive state with "well she has chronic fatigue and she's able to get up." There is no hierarchy in any of this. We can both feel awful in different ways at the same time. We shouldn't tell people to get over something because others have it worse. It helps no one.
This video made me legitimately cry, I've been struggling a LOT with chronic fatigue right now- I had grand plans to become a physicist, but I'm over halfway through uni and barely able to keep up with three classes a term. But your video helped so much, you're so reassuring, I just want you to know that your videos mean so much. Thank you.
Sending a lot of love! It also took me a while to get my degree, but it's important to do it at your own speed xx
CFS is having a pile of clothes to fold, a game night you DESPERATELY want to go to, and need to pee so bad you might explode but being unable to lift your arms much less stand. It’s laying on your bed and feeling like your muscles are too tired to stay attached to your bones. It’s having people call you last for taking the elevator even though you were proud of yourself just for pulling your pants up. It’s buying a soda bottle, asking someone else to open it, and using a straw because you can’t lift the bottle to your lips and having someone call you dramatic for it.
"Your bones are tired." OMG--yes! So validating to hear someone else describing what everyone seems to think (including me) has been all in my head. For seventeen years.
I remember when I got into school (age 5) I seemed a bit more tired than my peers. But, it got atrocious in high school. My friends actually got to the point they'd say "how are you? ...except tired" because that was my answer. I was so tired I literally could not comprehend other states of being. Then I got a blood test that showed I'd had Epstein Barr sometime my freshman or sophomore year of high school (the first 2 years out of 4). Apparently, most people just get a bit more tired for a bit. But I'm pretty sure I had it for several months. That fatigue has never fully left. It's awful.
I can push myself a bit, but the next day I can't get off the couch. Possibly longer.
I'm actually currently on the couch for day 2 in a row, feeling so exhausted that I am seriously wondering how I'm going to drink the water that's next to me... 😢 And trying to figure out if I caught a bug or just wayyyyy overdid it.
"The best thing that works is just living a slow life"!
Wow, Jessica, that's it! That's such a great way to express what it means to not have much energy! I so appreciate your wisdom and positive outlook!
Thank you for this!! Could you do a video about how you deal with people thinking you were or are "faking it"? My friend has this problem and we were just talking about how difficult it is to be left alone with your pain when you can see in other people's faces and even doctors that they're not taking your seriously, or wondering if you just like the attention. I really almost wish all disabilities could be seen, so people wouldn't have to deal with this extra layer of pressure.
I remember as a kid in school, everyone (EVERYONE) called me fat and lazy because I would get my mum to pick me up instead of the 15 minute walk home (for an able bodied person). I just couldn't articulate this to them. I would sob for the entire walk because the weight of my bag on my back and my body on my legs was too much. I practically had to drag myself home.
The amount of times "friends" and family accused me of just being lazy. :')
Me when energy goes away "man down man down!! Sleep time. Recharge alert. *alarm bells*"
Having literally no energy is quite possibly the worse thing about chronic fatigue.
Trying to explain its not laziness is so hard. Especially when you want to do something and just cant.
Lazy is "I don't want to cause I don't feel like doing that thing" Chronic fatigue is "I would do that thing but I can't because that takes too much energy. I am so tired that can't happen."
I've had such a shit day my depression hit me hard again and your end little speech just made me cry. In a good way. You're so positive and supportive of everyone and I can't even be that way with myself. I don't know how you do it Jessica but thank you 😢❤
Zoe Crichton I’m sorry you’re having a hard day. Gentle hugs
Hayley Keaton thank you hun ❤
I don’t usually comment on videos but this has hit so close to home it’s in my living room. I’ve been living with chronic illness and fatigue for three years (where it’s bad enough to be disabling) and the lack of energy is a constant frustration. But you are so right! Having a different body or a different style of life is not only okay, it is amazing because it makes you who you are and you are amazing. I’ve definitely lived the dark-room-dont-speak-to-me life and though I am better now I never forget what that was like because it’s a reminder that when the wall hits- STOP! Pushing the wall does not move the wall. It just makes your arms tired. Lots of love from California, I watched you almost daily for my reminder that it’s okay to be me and take things at my own pace. Cheers! ❤️
Love that outlook! ♥️
You describe ME and me and all the other illnesses like no one else. I can't stop watching your videos. You have a clever and articulate way of saying and describing. I love it. When I was young, my mom joked that me and my sister have a sleeping disease. How right she was. I still wasn't diagnosed until 2018/2019? who knows. I even thought I was so lazy, and constantly asked myself why am I so tired and lazy. I just wanted to feel good as all the other 20 somethings, and teens for that matter. Looking back I probably had pretty severe depression and anxiety.
You comment about Claudia literally melted my heart. You're both too cute.
This video seems very apt for me today. I am currently watching this video on my phone propped up next to my computer because I am too exhausted to open my computer. Even writing this comment I'm using speech to text on my phone because I am too tired to type. When is because I have an autoimmune disease, so my body is using all my energy to fight itself.
Maggie McCarthy Ugh I know that feeling all too well. ♥️
Thank you. Just thank you. I've shared this video with friends and family who just didn't get it. I'd been a ballet dancer as a child and taught through my teens. No one got it when I feel apart. 20 years later they still think of me as lazy, a quitter, someone who won't do anything for herself and complains all the time. If I say I can't do something, they say I'm whining. I get emotional and notice I've now thrown all my spoons at them and can only go back to bed. You're my good will liason. You're able to get through to them when I failed. So, thank you!
Good to clarify the differences anyone might have with their conditions, syndromes, temp or constant pain/fatigue, etc. I hope to be more considerate of this issue and remember, some conditions/symptoms can be unseen so I will try to judge less, be grateful more. Your condition is so profound, I'm truly sorry you have these conditions. You keep going and that is remarkable and the BEST approach. You share to help others and I know it does. Thank YOU.💖
Anybody else watching videos and as soon as "your" disease gets mentioned youre like "heey!thats me! They are taking about me! Wo hoo" and them you realize its not really a thing to be happy about bc you have a chronic illness, but at least you were mentioned in some kind of way by a person somewhere that doesn't know you, and that kinda makes you happy but doesnt and its weird.
"I won the life lottery" I like to tell people I rolled a 2 on my constitution when I was born during the character creation process :P
That's a wonderful way to tell people!
This is a great analogy. Stealing this haha
That's brilliant!
I always say to people that whoever created humans looked at me and went, “Oh yeah. This one’s gonna be real special. Extremely sick and even more extremely stubborn.”
😁
I don’t think I could adequately express what this has meant to me. It has been so many years, no one has made me feel understood. It is so incredibly isolating. Thank you. Deeply. Your videos have brought a light into my life in a significant way. Merry Christmas. Thank you.
Thank you for bringing light to medical issues that are not seen on the outside of the body! You are an amazing woman and I look up to you so much!
I also have MCTD and I just sent this to like 5 different people in my life who complain about my being "too tired" to do things they deem easy. Thank you for all of your work and all of the content you put out, it's a genuine joy and your honesty and openness is a gift.
My mum has chronic fatigue and everyone thinks she is just fat and lazy so she now tells everyone she has M.E be uses everyone takes that more seriously. The reason my mum got M.E was because she was doing too much work being a full time mum to me and my sister and a full time carer for my nan. She's loosing weight and having more time to her self which helps
Hi Jessica! What do you think about creating, maybe, a monthly Q&A so you (or you+Claudia) can explain most of the frequently asked questions from your followers? Like an #AskJessica or something like it
Oh my lord Jessica just record some inspirational audio books already! 😭 SO MUCH of what you said goes with depression and mental illness as well and I swear I cried watching this. Love your heart.
Crying watching this. Your life mirrors my life so much. I’ve been beating my head against the walls to be heard, seen to no avail. For easily 8yrs now. It’s beyond frustrating and heartbreaking. And I feel all alone always. With no one who understands but feeling guilty bc I’m not enough for anyone or bc I can’t do more though I fight and fight for that glimpse of energy and push till I can’t habfle it just for one normal memory. Hugs to you and thank you for sharing.
I have no words to show my admiration for you. Frankly, I cannot even imagine your life despite any explanations, but that's okay. I simply want you to know that you're my constant inspiration. You do inspire me not to miss a single moment of happiness in my life, to explore it and, most importantly, be openminded. Thank you!
I bless the day I came across one of your video.I have no more words to say except one: thank you.
I have 30 things on my to do list daily and hearing someone else doing 10 things helps because getting 10 done is a very good day
This has me bawling crying. Ugh, Jessica thank you. Yeah I've collapsed in the street in public on my own and been stuck a lot in my life including when I was kept homeless by the council (long very sad story). Thank you ❤️
"You're too tired to close your mouth, and then a little drool comes out..."
good gods that's such a mood
I am so tired of drooling on myself
Watching this from bed.... I relate
You are honestly such a big support to me, everyone else that I know that has chronic illness is very much of a "my horse is bigger than yours" type of person. It's great to just relate to someone without comparing
The marathon analogy is apt. I used to be a rower and remember that moment the pain and tiredness would hit during the race. It is exactly what I now feel every day. This will now be my go to analogy.
As someone dealing with this syndrome this video was so good. It explained the feeling perfectly
I know this is an older video, but I really needed this today. I have hEDS and today I had a fatigue crash at work in front of my boss and co-workers. It was really embarrassing since I get muscle spasms specifically in my face. Thank you for reminding me that I'm fine as I am. ♥️
You are so seriously inspiring. I am not even disabled in any way myself (perhaps besides depression which can get out of hand) but you have helped me mentally be so much more positive. Your attitude is incredible. Thank you so much Jessica and Claudia!!!
Thank you so much for this vid. I came to chronic fatigue when i was a young adult, but i had to just accept my conditions, and i learned to be choosy about my energy expenditures. My mother was my ally, and helped me. I am much older today (i'm 61) and am rarely "floored" by my CF but sometimes just have to say no to doing anything. One nice part of growing older is that it clears out the non-friends and others who drop away. I finally have the disability status i need, and now have a carer help with a great many things i cannot do--washing, cleaning, etc.
Your videos are so helpful and wonderful!
Just found this. This is EXACTLY how I feel. You put something into words that I've had so much trouble explaining to people.
I've got two chronic illnesses, plus anxiety and depression so basically just existing takes it out of me. You said a few things that really made me feel better about myself, particularity the exercise bit. My dad is always going on about how I need to exercise. (That's literally his cure for everything. I could lose a limb and be spurting blood everywhere and he'd be like 'but have you tried exercising??) But anyway, thanks
Emily Graves that seems to be loads of people’s go to! I’ve been to a doctor who said it must be sugar! despite me rarely having sugar! I’m often not having more than one meal a day so it’s usually very healthy
FlyingWonderGirl ah yeah food/diet is another go to for people! I had a doctor tell me that my terrible stomach pains were probably because I simply had a “sensitive stomach” and he gave me a list of foods not to eat, despite me telling him that I basically didn’t eat any of the foods on the list. Long story short, my “sensitive stomach” turned out to be Krohn’s disease and autoimmune hepatitis. Both of which I ended up basically figuring out through Google before any doctors got around to making that diagnosis!
Tearing up watching this because I finally have someone I can relate to and know I'm not alone or 'lazy' like I've been pegged my whole life when I'm just poorly
I’ve never heard someone explain chronic fatigue so well, you just explained my life thank you for showing me I’m not crazy
I’m randomly really emotional about hearing someone else describe what I feel. Chronic Fatigue Syndrome stole my teen years and has affected my daily life everyday as an adult. To hear someone else describe it and know they feel it, too... it’s much more powerful than I expected. I feel heard. I feel seen. Thank you, Jessica.
Watching in 2020 while suffering with chronic pain, fatigue and fibromyalgia. The end of this legitimately made me cry because you got it and said things that I apparently needed to hear from someone other than myself. Thank you. Your videos have been helpful just by feeling seen and understood. Not with worry, or "man that sucks", or yeah I feel tired too. Just that it's ok, it's there, and you can get through it.
Always full of such wisdom, kind heartedness and patience. I personally do not suffer from CFS, but I find it so very insightful to hear as to how you adapt having it into your life to make it work for yourself. I see such a strength and warmth in you. I honestly adore listening to you speak about anything and everything, but truly love to hear you talk about topics such as this that bring forth your wisdom. Much love
It really goes to show that you have a choice in your attitude! She has so many health struggles and still is the sweetest woman with a beautiful heart
This is my life. I have Rheumatoid Arthritis, we are suspecting MCTD, chronic pain, and severe GI issues (mush like yours Jessica). I am either so sick with severe nausea and vomiting and other fun stuff, with moderate constant pain or days when my GI issues are minimal my joints wake up and start screaming in pain. I often wake myself up in the night crying due to the amount of pain I am in because I cannot sleep in any position without causing severe pain. Sleeping on my sides makes my shoulders and hips flare badly. Sleeping on my back causes my severe SI/lower back pain worse. I am in a constant state of exhaustion and pain. I am fighting to get help. I now have to travel to Cleveland Clinic in Ohio which is 13 hours away (driving). I will have to fly, by myself with using a walker and navigate this massive medical system on my own. I just want help and have been treated so poorly by so many Rheumatologists that I have little hope of any help. I love your videos. They help me so much and feel not alone and more importantly NOT CRAZY like a few former doctors have said. My biggest cheerleaders is my PCP, Oncologist, and my therapist. Thank you so much for all you do.
Oh wow, I didn't actually know that there was a difference between Chronic Fatigue and Chronic Fatigue Syndrome (thankfully I haven't been telling people I have CFS, just Chronic Fatigue. But mine's due to accident induced head trauma, digestive disorders (my body expends too much extra/unnecessary energy trying to digest because it doesn't do it properly), and mental illness from said brain damage. I've never had joint pain associated with mine, though I get muscle fatigue extremely quickly on top of brain lethargy. But I have small bursts of energy, the BAM! I'm out (whether I've done anything physical or not). Can't move, hurt, and good luck eating anything or remembering to brush my teeth (or having the energy to brush my teeth). Oof, this one's hard to figure out...I just don't want to offend anyone using the wrong terms!
As always, I'm in awe of you. I don't know how you can function day to day, much less look as marvelous as you do. Haven't washed your hair in 5 days and it still looks that lovely? My hair would be a slick straight greaseball by Day 2. #hairgoals
The beginning of the video was super adorable. You make me want to want to do videos like this about disabilites (but obviously not copy you exactly, as that'd be rather rude. You're just so inspiring.
I've thought about CF a lot in the past few years, because I've had these long episodes of just being so tired and exhausted and nothing has helped. I haven't always been like this - my fatigue got really bad after a nasty flu - so I've been really frustrated with the brainfog and not being able to function like I used to. My symptoms are nowhere near as severe as yours, but this was still a very informative and relatable video. 💕
"It's not always, it's not constant, things will change" God, I just burst out crying, that was- that was the kindest thing, and I needed to hear it so much, and I cannot tell you how much hearing that meant to me.
Thank you for this, Jessica. "Living a slow life" is a terrific concept. Two of my nieces live with the chronic pain and fatigue of MS. I live with epilepsy, which not infrequently landed me helpless on the floor, and clinical depression, which (along with the anti-epileptic drugs) still sharply limits my daily energy. I think we all struggle not to judge ourselves as others' have done. You're a model of accepting the truth of a situation, taking care of oneself, yet still finding love and happiness. Thanks very much for sharing your thoughts and experiences. You bring such grace and perspective to all of the topics you address, and here it is especially appreciated.
It’s great that 18000 people have watched this already! 👍🏻
I have more classic ME in that I was normally active, got glandular fever and I can remember the moment I first felt that type of ‘fatigue ‘. It wasn’t like anything I’d experienced before, it wasn’t more tired it was qualitatively different. Though I do fall into the habit of saying I’m tired when that’s not really what I mean and doesn’t aid clear communication.
With ME there are different courses of the condition though and not everyone has a distinct onset. It quite often goes with EDS which is a lifelong issue, and the point at which EDS becomes EDS and ME (and POTS?) I could well imagine might be less clear than getting ME from an infection when you were perfectly healthy before. Heritability for ME is 50% and potentially higher in children who get ME. It could be possible that the trigger infection was something like a minor cold when you were tiny (as speculation).
Though always worth looking for alternative explanations, I think it is sometimes a lazy diagnosis when doctors don’t want to look for rarer conditions.
I think it is quite hard to know what chronic fatigue feels like with other conditions if you have ME because it’s so tied up in also feeling malaise/sick eg people who have depression also have chronic fatigue. I’d be interested in people’s description who don’t have ME but have chronic fatigue.
Jessica, would like to see what your exercise routine is? Would also like to her about your life w/ M.E., if it's not too painful & u feel up to it.
I am so so glad I found your channel! I've been having test after test to determine if I have MCTD (yup...I do), and as much as people want to "understand", and help... they just don't realize how deep the fatigue and pain are. And a bath with epsom salts feels soooooo good, but I also have Autonomic Neuropathy and can't control my body temp either, so between the effort to draw a bath and the chance I will suddenly be burning up and have to get out...it becomes a time and energy waste. Your positivity has helped me greatly, and I'm learning it's ok to let my husband help. Thank you for being amazing and posting videos like this! We're getting very close to 🎄!! Fingers crossed for 🌨☃️ for you and Claudia as well as here in Indiana!
What a fantastic video! Currently lying in bed, thank you for imparting both wisdom and hope on a dark day. Sending spoonie love!
I don't have chronic fatigue, but I do have chronic depression and regular migraines and this really resonated with me. It's hard to remember to just do what you can and not be upset that you can't do more. Thanks for the video (2.5 years late)!
Hi Jessica, I first started watching your videos because they looked so bright and cheery. When you started talking about your disabilities, I was even more inspired by your resilience and beauty. You and Claudia (and Walter and Tilly!) really help to keep me going on bad days. Thank you for everything. Happy Everything.
I suffer from depression and migraines and have been in treatment for 20 years but always sort of white knuckled it through schools and jobs. Just recently asked for accommodations at school for the first time. It was, like, a thing for me to admit that I have disabilities that need working around in special ways, but it's a relief and I'm so grateful. And I think your wonderful channel has helped me combat my self-stigma. Thank you for your bravery and disability-positive work. 🦄💜
Thank you for posting this, I have chronic fatigue and depression and this just really helped. Because sometimes my family and previously school didn't understand that there are times when I just can't do something, and I'm never going to be better. It was nice to be validated and and assured that I'm not just being lazy, or that I should be try harder. So thank you for that.
im looking everywhere for your exercize routine. im struggling with EDS, chronic migraines and i dont remember a time when i wasnt exausted. my confitions have suddenly worsened throughout these past 2 years to the point my family cant handle it anymore. "exercise!! move more! go outsideee get som sunlight! you dont move enough your lazy!!!" im so sick of it.. thank you for sharing your life with us. i truely love your Voice
I am so glad you shared this. Not only could I learn about what people who are chronically fatigued experience, but I learned how to more accurately describe what is going on with me! I am chronically fatigued, but it’s basically mild. I do not feel like I’m going to vomit and cry at the same time, and I can force myself to get a shower even though it is tiring.
I have MALAISE all the time. Thank you. Now I can use this to describe what is happening (and what is not happening). Maybe I’ll get a diagnosis in less than a decade now.
My sister can tell when I hit the wall now, and doesn't try to push me past that point, in part because she's learned pushing me beyond that means I'll have a migraine for the next two weeks and not do anything. Also, finding a restaurant I can order from has been very helpful. Sometimes I'm too tired/in too much pain to cook or prepare food, but I need to eat or feel worse. That has been a huge help.
Your description of of M.E. set off a worrying light bulb in my head. I've been feeling pretty unwell for a while now and after looking up more of the symptoms it does seem like it lines up pretty well with what I've been experiencing. It's not a perfect fit so I've got my fingers crossed that it's something more treatable and/or less chronic, but it's definitely something for me to keep in mind.
I hope everything will go well! And hopfully you can stay posative like Jess!
I got my fingers crossed for you
I hope you figure everything out. ♥️
I've been diagnosed with ME for lack of any other explanation and I really appreciate your explanation about the difference between ME and chronic fatigue, because it's helping me sort out the complete chaos that's my life with like 10 different health issues
Thanks for addressing exercise! It's a tricky topic if you have fatigue on top of other conditions that really benefit from light exercise. Try and find a physical therapist that frequently works with the elderly. Because we are physically like, 88 lol. Isometric exercises and very gentle motions are best, in my personal experience.
The most important thing I learned was the difference between Chronic Fatigue and Chronic Fatigue Syndrome and learning that they are not the same thing.
I would love to hear more about M.E. because you explain things really well, like only a really good teacher can. I'm generally would love to hear about your time in psychiatric ward, partly because I'm curious to be honest, but partly because when you talk about your invisible disabilities and your teaching about them to us your audience (and anyone who watches) I walk away learning and having deeper understanding as to what it is and being able to tell that to someone else.
The bit with your body constantly telling you "HEY! Did you know something is wrong?? Something is really wrong here!!" " YES I KNOW BODY!" was hilarious. Accurate summarization there. Super super funny.
For more information on ME/CFS, check out the documentary "Unrest."
I completely understand about knowing deep inside yourself that something, SOMETHING is wrong with your body. But it doesn't show up on all the tests the doctors do, it's not on the xrays or any other form of testing. But you KNOW something is wrong. The doctors keep saying, it's all in your head! How humiliating!
Watching this video brought up all kinds of negative emotions for me. But it also gave me new knowledge to begin to reframe those past experiences. Thank you Jessica!
I probably do have ME, but with other diagnosis under my belt, getting THAT diagnosis isn't likely. My start point was December, Senior year of high school, when I contracted mono. After 3 months of battling, I came out the other end wiped out and I've never recovered from that exhaustion. When I relapsed with Mono 6 years ago, it got even worse. It was then that my other illnesses really kicked up a notch and Disability was starting to look like a reality. Ton of fun... I could ramble for HOURS about it.
Either way, THANK YOU for making this video. I'm saving it to send to relatives that are "just looking out for me".
I'm so glad my roommate introduced me to your channel! She wanted me to see how you're able to keep such a positive attitude even while going through several of the same issues I am. I've been going to doctors for years and have yet to get a diagnosis for my chronic exhaustion. I keep being told that I'm just lazy or a hypochondriac, when for a 2 1/2 year period I had daily migraines and couldnt remember how to walk or write, and I would exhaust myself even trying. So much of what you say gives me hope and relief I'm not alone, and maybe I'm not just incompetent with life. You are a wonderful woman and I look forward to more of your videos.
When I was diagnosed with interstitial cystitis (or painful bladder syndrome) two years ago, I had a mix of sadness and relief. I’d been doing so many things to cope, never realizing that most people didn’t have to face that same hurdle each day. Sort of validating, but also... sad, if that makes sense. Your story about lying to your friends to hide and rest made me think of that feeling. ❤️
By the way there’s an amazing documentary about ME called Unrest. I really recommend it, it helps understand the decease a lot.
Flowers&Ghosts Yes - definitely one worth trying to see!
I really relate to this. Chronic fatigue is one of the symptoms of my chronic illness and I spend so much time being tired and frustrated with being fatigued. It really made sense to me what you said about those of us with chronic fatigue running out of eneergy and that kind of just being it.
I honestly learn so much from your videos, Jessica. Thank you for sharing so much with us. Your channel has completely changed my world view regarding disabilities, and it was such an essential change. You're awesome!
your videos help me so much, im in the middle of diagnosing my chronic pain, they told me it could take a year or more for a solid diagnosis and treatment plan. ive never seen a video describe me so well. my mom askes if i got a good night sleep, i say yes and she asks why im still tired then. drooling in class and thinking im a weird freak for it, never realizing it could be reated to my condition. staring off into nothingness for hours at a time, just tired. especially the copy and paisting texts about my day. thank you for being so open about your disabilities, it help in so many ways. now i have something to talk to my doctors about.
One of my best friends suffers from chronic fatigue and like this helped me understand her experience, like I kind of got it, but I couldn't really imagine exactly how it must feel, besides just the tiredness. So thank you so much for sharing your experiences :)
"...I will stab them in the eye with a spork.... " this is why I love you. Lol... I usually put for the "Hysterectomy with a rusty spork" but eye stabbing is good too.
BahstX thats woman specific tho
Derek lol... Yeah... Though, to be fair, me saying this started because of a very nasty female ex friend of mine.
I am 15, almost 16, and i have a lot of chronic fatigue symptoms. I am also in the process of getting diagnosed with ehlers danlos syndrome, which i know is comorbid. I am also autistic but that's not really relevant. I have had chronic fatigue symptoms for about a year now and it gets hard to hold my head up sometimes. But it's not always visible to other people since i prioritize hygiene over just about everything else so I don't seem unable to care for myself. However, I have a very difficult time making myself food and getting out of the house. I don't go outside most days, except on weekends when I have church and then after church I can barely move for the rest of the day on bad days. It's really hard and I wish I had an actual diagnosis.
I know this is an older video but having just watched it, it really spoke to me. I'm not sure what my fatigue and exhaustion is but the last few sentences you spoke felt like you were talking directly to me and I cried because finally someone understands. Thank you Jessica.
My mum wanted me to thank you, for helping her understand my illness. she now knows a few more ways to help. You explain things so well and me and mum love you!! Stay being you!! You are frickin awesome!
Yes please! Get me an ME video Gurl! You are the first person ever I've seen on RUclips that actually describes how I feel and what my body is doing
As a person living with chronic fatigue, I deeply relate to this video, thank you so much for it ❤ and I love your humor
Gotta love not being clean...woo...
Am being given a shower stool in the new year to help me wash. Am stupidly excited about it
My shower stool is a life changer!! I also have POTS so it makes a lot of difference. Still tough to shower overall, but much better. Enjoy!
I know this was forever ago but just wondering how you got on? It's so wonderful you got a tool that could help!
Thank you very much for these vids. I have experienced fatigue for over a year now, linked to a heart condition, and watching this particular one made me realize what I felt was beyond common tiredness.
as odd as this is to say; it is so nice to hear someone else's story . i am so sorry you have to go through this . you inspire me so much . i was dealing with chronic fatigue forever . i was so frustrated . my doctors didn't think it was much . it took me over 2 years to be diagnosed with ME/CFS . i now have a great medical team that helps me out so much . i am getting infusions for my POTS which really helps my ME/CFS . so happy i stumbled across your channel