Articles, Blog

Are You Wasting Your Energy? // Chronic Illness Life [CC]

December 25, 2019


Hi! Have you ever asked a disabled person why they waste their energy on something? If so, you may have been sent this video so that I can explain, and tell you to shut the hell up. Being disabled or chronically ill obviously impacts on the amount of energy that you happen to have. Especially if you have a condition like chronic fatigue syndrome. So from the outside looking in you may wonder why that person who has a finite and limited amount of energy resources bothers to use their energy on things that you deem to be a waste, and unimportant. Here are three main reasons why that’s wrong and you should never tell someone that. Don’t do it. Number one: It is my business what I spend my energy on. My business. Unless it directly impacts you, stay out of it, I guess? It would be quite a bad thing to say I don’t particularly like anyone who looks at someone from the outside of their life and decides to judge them for how you perceive their life choices to be how you think they are living their life without actually being aware of how they are living their life. I think this applies whether you’re a friend or a family member Just because you are related by blood does not mean you understand everything that’s going on in a person’s head. And you may see them and you may think “oh! you should be using your energy surely on reading books rather than reading this trashy magazine” Maybe they read books all day long and, you know they’re just taking a break to read the trashy magazine or, maybe they just want to read a trashy magazine You know, either way, still none of your business. Number two: following on from the trashy magazine thing, people who have disabilities and chronic illnesses have to use their energy for things that you don’t really think about when you’re able-bodied It might be that it takes twice as much energy to have a shower as it does to someone who’s able-bodied you don’t jump in the shower, [pfff] and you go and you’re off But someone who’s disabled oh my god it takes so much extra thinking, extra work, It’s physically, really demanding as I explained in my spoons video If you don’t know what spoons are, you can check that out, we’ll put the link down in the description and in a card above, so you’ll know what I’m talking about. So all of that energy has to go in pretty menial tasks and things that are just bloody boring to be honest. You know? I have to spend 80% of my energy everyday on things like feeding myself and putting clothes upon myself and even going to the loo like literally the physical getting up, getting to my toilet, getting back from the toilet… It’s a lot of energy basically it’s what I’m trying to say. Also the annoyance of having to take your clothes on and off – if you ever wonder why I wear skirts, that is part of the reason because doing up trousers takes like half an hour for me. And then of course I have to spend my energy just on staying alive which seems to take three times as much energy as it does for other people because my body is trying to redirect my energy into healing itself which is something it will never be able to do because my DNA is broken but boy, boy does it try. It has a really good go, and that’s, that’s very noble of my body but I’d appreciate it if it stopped. So that’s part of the 80% as well that 80% is actually yeah life-saving and Vital things need to do every day but it’s pretty boring So I want to take that 20% of extra energy, and I want to spend that on doing my own makeup, and my hair, And getting really upset about the final of the bake-off (God damn it) then that is what I will spend that energy on because it’s fun, and I deserve that. Number three: energy can also be “wasted” on things that aren’t fun, and also, aren’t essential. And this might, in my case especially, just be down to personality. I have a theory that if I were not disabled, I would be a very different person. Such as, I ruddy love a spread sheet, I do, and I love to be precise about everything. I would adore if everything in my life had its very special little place and was categorised and colour-coordinated and coded, and… oh hello, hi! I would love to spend all of my energy on these kinds of things on making a pin board where everything is perfect and precise. Ahhh! I’d also like it if everything in my house was really clean, and really really tidy, I don’t have the energy for that. My personality wants it to happen, my personality wants me to go go go go every second of every day, Spend 110% on absolutely everything, and make absolutely everything as perfect as it possibly could be, my energy levels aren’t really there, so I don’t get to do that, I don’t get to be myself and be who I really am so I kind of have to just let things go, I have to be like, oh you know, I don’t really have the energy to tidy this today, ergo, it’s just it’s just gonna be there. If I’m putting a picture on Instagram, I want to be able to spend time and energy on making it absolutely perfect and precise and that makes me so happy it’s almost difficult to explain because, I’m tapping into a part of myself that would like to be out there making everything perfect, putting lots of energy into everything, but I can’t do that, I have to let things go. But sometimes, sometimes I indulge a little bit of myself And by doing so I feel more like me and this is where the third part of this is so important because there is no such thing as wasting energy if what you’re doing is making you feel better about who you really are despite the disabilities or despite the chronic illness the fatigue the whatever it is that is holding you back having just a few moments in a day to really indulge yourself to really show off who you really are, to just let yourself be that person is vital and amazing if you’re a really incredibly sporty person that’s who you are and you want to run everywhere But you have a condition that means you can’t really run, you can’t do that, no, but maybe, just, maybe for five minutes a day you can. You go. But then you’re extra-specially knocked out afterwards and you’re really you’re just gone you’re pretty useless yeah you got no energy people can look at that from the outside and they can say “What a waste! Why did you bother spending your energy on that?” But what that person was doing was making them feel really good about themselves it’s a kind of, tragedy of disabilities and chronic illnesses that they bury who we really are sometimes we become subsumed, our actual personalities are here, and then we have this veil of the disability the way the world sees us the things that we have to do to look after ourselves and if we can have just a few moments To “waste our energy” by indulging who we really are who we would be then surely that’s not a bad thing So there you go, there is my little explanation in why you should never tell someone that they are “wasting their energy” Don’t do that! I hate it! And other people do too! Don’t do it. Thank you so much for your lovely comments about our announcement about going to Malaysia! yeah! If you haven’t seen it already I’m gonna link down below in the description or you can just click the card above. Yes! and of course there will be a lot of energy management going into that And I’m gonna include that in my videos as well. While we’re out that would be saying how you can travel and not “waste” all of your energy That was a single bunny ear, does still work? “waste” all of your energy [Music]

100 Comments

  • Reply Elizabeth Smith November 8, 2017 at 2:27 pm

    What a wonderful video! And so spot on.

  • Reply Cerys Rose November 8, 2017 at 5:53 pm

    I love this so much. you explain things in such a nice way, whilst making it clear how seriously you mean what you say. I really hope your trip to Malaysia is amazing!

  • Reply Michelle Tackett November 8, 2017 at 11:43 pm

    Do not listen to them Jessica. I only know you from your videos, but you seem like an absolute sweet person and I feel you. I have to explain to people about why I have low energy a lot of times.

  • Reply Nicollette S November 9, 2017 at 12:45 am

    This is really an entirely different subject, but at times, I have trouble sorting out what's my illnesses and what is my actual personality. I'm also a perfectionist and very prone to feeling guilty. Sometimes, it feels like the fact that I'm not always pushing myself to my limits (and past them) is a character flaw. Oh, how society has conditioned us. Other times, it's just super frustrating not to have the energy to do the things I want to do.

  • Reply hall0w33nb0y November 9, 2017 at 6:17 am

    oh my fucking god thank you
    I’m sick of able bodied allistics lel

  • Reply wonderfullightfixture November 9, 2017 at 6:29 am

    VERY TRUE! I have found my personality to have been so changed by the shift in my health, so I loved hearing that it's a common thing (it somehow never occurred to me). Also, this video is so vindicating. One additional point to the list… "I assure you that I am internally telling myself I'm wasting time CONSTANTLY- I really don't need that coming from an external direction as well!"

  • Reply Burning Down Wonderland November 9, 2017 at 3:47 pm

    What disability does she have?

  • Reply Ginny D November 10, 2017 at 4:51 am

    I get this all the time. For a variety of reasons, whenever people tell me I’m wasting my energy it makes me feel 5000% worse and less able to do anything afterwards. If they didn’t say so in the first place, I would feel so much better and manage my energy better

  • Reply sea puppers November 10, 2017 at 5:21 am

    I found you're channel today and started binging your videos. And ive learned a lot. And im am loving how cherry and positive you are, it just brightens my day.

  • Reply hgbearawesome November 10, 2017 at 11:35 am

    I have a question. My mom is disabled and spends a lot of time watching tv and makeup videos on YouTube. This would be ok for my dad and I, but the way she feels about those activities seems more obsessive than making her happy. We've tried to encourage her to start a hobby like making videos herself, maybe joining a book club (in person or online) and while she seems receptive to that, she'd rather ignore everything (even taking care of herself!) and just sit in front of the tv all day. So how can we help/encourage her to do things that would be more fulfilling to her?

  • Reply Maria Maj November 10, 2017 at 5:03 pm

    This video is so great and so important! Also, I’m beyond thrilled to find another disabled, vintage loving lesbian! ❤️

  • Reply Anya Zombiedog November 10, 2017 at 11:51 pm

    I just found you and I love you! I suffer from a few chronic illnesses. I can have really good days where I am not tired or just beat down. Then other days I sleep all day because I am just that exhausted. I was happy to see you do the spoon analogy too! Keep up your great work 🙂

  • Reply Rachael Williams November 11, 2017 at 3:45 am

    Haha wish I could be sass and send this to sooo many people!!! Speak it!

  • Reply Sierra Cook November 11, 2017 at 5:04 am

    I have Lupus, and a host of other coinciding medical issues. I have chronic fatigue syndrome on top of everything else, so I have to be very careful with how I spend what little energy I do have. Thank you for speaking out about this, Blessings Be.

  • Reply Sleepy Santosha November 11, 2017 at 4:26 pm

    This has so perfectly articulated how I feel about this! Chronic illness really does rob you of so much. I used to be a very active person and would spend most of my time outdoors exploring and hiking and such. And now I just spend so much time indoors on the couch. Whenever I have a bit of extra energy, you can bet I’m going to spend it on doing something outside even if there are dishes or laundry that i “should do” instead. We deserve to have fun and enjoy life ☺️❤️?

  • Reply Laura Jaine November 11, 2017 at 7:19 pm

    Oh my goodness me, so much this, autistic adult diagnosed as an adult, with ADHD, depression anxiety and dyslexia. I also have so many stomach issues and get so much fatigue. I totally relate to having everything ordered and neat but not having the energy to do it.

  • Reply chrissyzcreationz November 12, 2017 at 8:04 am

    I found you on my suggestion part of my page and clicked an older video because it mentioned you being deaf. I'm married to a man who was born partially deaf so I wanted to see what you had to say. I subbed and went to sleep. Tonight I saw this video and clicked again because I have Lupus and Fibromyalgia. Needless to say, I am thoroughly hooked now and will be binge watching your videos now to catch up! THANK YOU for doing what you do!!

  • Reply 0neul November 12, 2017 at 11:08 am

    i subscribed yesterday and had to unsubscribe today and after watching more videos. you’re informative but you seem to attack people who genuinely don’t know, are concerned, and are curious about disabilities (which i do not think are bad things). also unrelated to this video but you made a movie review critique about a movie you didn’t even watch. why do you assume people ask things to be offensive on purpose. some people are ignorant on things they’re not familiar with. so please don’t tell people to “shut the hella up” especially when they ask a question that seems to stem from concern.

  • Reply Kale Kati November 12, 2017 at 1:39 pm

    I love this video ?? thank you for educating people (f.ex. me) about this important topic ❤️

  • Reply Lorraine B November 12, 2017 at 2:44 pm

    I have just spent the last few days watching all of your videos and you are incredible and so uplifting. The way that you approach your disabilities is inspiring and has made me feel very different about my body. I have had a tough few years with failing bones, surgeries, perforated stomach ulcers, various other long term problems and now it’s looking very likely that I can’t have children. I have felt like my body is failing me in almost every way and have felt incredibly down about it. I thank you so much for showing me that there is another way to approach it. I really can’t thank you enough. X

  • Reply Grace Law November 12, 2017 at 2:46 pm

    One of the things I've found to be most helpful both in energy levels and my disability symptoms is avoiding showers as much as possible. Baths for the win.

  • Reply Grace Law November 12, 2017 at 2:52 pm

    Also, I had a twelve-hour speech competition yesterday and this is the first time in four years I've come back from one and didn't need one or two days' recovery. So go me.

  • Reply helloxBloom November 12, 2017 at 3:53 pm

    Idk why but when i watch your vids always push me mack to 1950's or 60's. But thats meant in a good way because i really like the 60's even tho im 12 lol.

  • Reply Deborah o November 12, 2017 at 5:21 pm

    I have an invisible illness EDS but managed to work as a nurse therapist part time until recently, one of the things I love to do is put makeup on, it makes me feel better about myself and stops me looking Ill, and it’s one of the things I’m still able to do! One of the therapists commented on this about how I have the energy to do this when she only managed to get dressed in a morning a silent insinuation of “ are you really ill”. I could have commented that she did have the energy to do Zumba, go clubbing, attend drama clubs etc etc when really my life consisted of work and bed and putting makeup on predominantly to stop people asking if I’m Ok all day, but I just smiled and wondered what she had actually studied during her 5 yr psychotherapy training!

  • Reply lottie s November 12, 2017 at 5:54 pm

    think i need to send this to everyone i know omg

  • Reply Eloise November 12, 2017 at 7:59 pm

    You should look up a video called "catching Kayla". It's a beautiful story about a girl who runs but has MS, and as a result she can't feel her legs the longer the race goes on. Therefore when she finishes the race, her coach has to catch her. I think you'd love it!

  • Reply imascrapaddict November 12, 2017 at 8:19 pm

    Thank you for your videos. I just found you and you have profoundly touched me.

    I was diagnosed with a rare (last I heard I was 1 of 15 cases) illness that affects my lungs, lymphatics and causes terrible pain. I have been disabled for over 16 yrs now. I was only 31 when I was placed on oxygen full time. I have heard terrible things come from caring people who just don't understand. If I don't have cancer and can do my makeup, well I guess I am not trying hard enough. Also, your comment on bathing was spot on. It is exhausting and more often than not causes me to go lay back down.

    So I am very grateful for your sharing. I look forward to more of your videos. Take care and keep doing what makes you happy.

  • Reply Hannah November 12, 2017 at 9:18 pm

    I've recently been diagnosed with Hashimoto's (autoimmune thyroiditis) and I admit I've been in denial about it. Finding your videos, however, has helped me so much to accept that yes, I do have a chronic, probably lifelong health condition, but, while my 'new normal' is taking some adjustment, I can still pursue a full and happy life regardless (even find someone who loves me despite my limitations!). You're an inspiration and I'm super grateful and happy that I found you.

    PS if you ever wanted to do a video on employment with a disability or health condition, and the stigma around not working or being on social support, I would love that. Being unemployed because of my health and dealing with other people's (99% negative) reactions to that has almost been harder than living in a body that doesn't work as well as it used to. Love x

  • Reply Peyton Flynn November 12, 2017 at 11:00 pm

    Could you do a video about sex and disability?

  • Reply Emily Julia November 12, 2017 at 11:15 pm

    whieeh I'm realy happy I found you! ♡

  • Reply joyful journey November 13, 2017 at 4:39 am

    I relate to this a lot. I'm not disabled but I have a few chronic illnesses (including a personality disorder… and boy it is tiring and hard to deal with) and I feel very misunderstood most of the time. Thank you so much for this video! ?

  • Reply barbh1 November 13, 2017 at 4:52 am

    I have had Chronic Fatigue for a long long time. The spoon theory made me really happy, because I can now easily explain why my time management is the way it is.

  • Reply PalisBee November 13, 2017 at 4:55 am

    ???

  • Reply Grace von Vital November 13, 2017 at 8:13 pm

    I’ve read about your spoon theory before, I have a chronic illness and it helps others understand my conditions on limited energy so thank you so much for that ❤️

  • Reply J.-C. Lamy November 14, 2017 at 4:28 am

    Your videos are so great!!! Keep up the great work, I love how authentic you are in your videos! It makes your videos crazy interesting. I found your videos out of nowhere and I’ve been watching all night and clicked subscribe the first video I saw

  • Reply Beautiful CatRoams November 14, 2017 at 10:38 pm

    I LOVE your personality xxx??

  • Reply Christy T November 15, 2017 at 2:22 am

    This is the best video ever!! #showeringisadrain

    I adore my label maker….sadly, since getting sick, it doesn't get the use it once did.

  • Reply Christy T November 15, 2017 at 2:29 am

    My primary physician once told me to save energy by not talking….I had to spend three days in bed and silent, in order to have the energy to speak my mind in that appointment. I knew that after the appointment, I would have to go directly to bed and wouldn't be able to digest food, because my fatigue causes my gut to cease functioning and my blood pressure to plummet.

  • Reply Kirt Kirt November 15, 2017 at 2:40 am

    reading a trashy magazine takes less energy than reading a book too.

  • Reply Katie H November 15, 2017 at 3:53 am

    I have never commented on a YouTube video before but just stumbled upon your channel recently and have been just blown away by your awesome attitude and charm. It is rare to come across individuals who are so well composed, well spoken and fun to watch. Great videos with some needed insight into life from a different perspective. Thanks for creating such fantastic content. ?. Ps that makeup is so on point!

  • Reply Julia Skott November 15, 2017 at 10:27 pm

    Loved this.

  • Reply Sophie N November 16, 2017 at 5:01 am

    “So I can tell you to shut the hell up.” QUEEN

  • Reply East Rivers November 16, 2017 at 2:59 pm

    As someone who gets mocked for not doing my own cooking, I appreciate it! I can't do it because it will be all I do that day, but even friends who are good about my disability make it out like it makes me like a child. If I expend my energy on the survival requirements in the hierarchy of needs, I won't ever get to do the things I love or want. Part of living a "normal" life is "wasting" energy on the frivolous things most people do, even if it means not being able to do the things people see as more essential or important.

  • Reply StrawberryLil November 16, 2017 at 5:11 pm

    Thank you again for educating all of us. Of course everyone has to do what makes them feel best! I only ask why someone wastes their energy on something if it is clearly visible and if they tell me that it doesn't make them happy. Because in that case I am concerned for them. Otherwise, if you want to use your energy on doing a five minute yoga practice with your dog on your living-room floor, do it. Do whatever makes you most happy <3

  • Reply Kate. Bellatrix November 16, 2017 at 10:15 pm

    You're part of my 20% these days 🙂 Love, love your videos. Thank you.

  • Reply Carol McKenzie November 16, 2017 at 11:44 pm

    The bathroom…I'm having mine torn out at the moment and redone to accommodate my needs (walk-in shower, no tripping hazards, paddle handles on faucets, etc.) But in the meantime, I have to go to the second floor to use the upstairs bathroom. While I knew I'd be sans toilet and all for the duration, somehow that trek in the middle of the night has become like climbing Mount Everest. Plus I tend to forget there is no downstairs facilities, and have caught myself more than once on the way to the demolished bathroom, only to have to turn around and find the other.

  • Reply Sophia Humphrey The Tiny Kitten Human November 17, 2017 at 6:44 am

    I’ve been almost bedridden for almost two weeks because of my disabilities and was struggling with this exact thing! Feeling so bad if I used my energy to be up for two hours to watch a show ( which requires sitting up on the couch which if you’re fully able bodied may shock you takes a lot of energy!) rather helping my dad with the dishes for 20 mins… you almost made me cry because I don’t have to feel so terrible when I utilize any small amount my energy on things that make me happy! Thank you. 🙂 yay thank you for always being so open and for confronting things like this head on!

  • Reply тм November 18, 2017 at 1:44 am

    i’m a spoonie aswell and seeing someone else with a chronic illness being so successful really inspired me

  • Reply QueenKhaleesi November 18, 2017 at 4:46 am

    You’re so eloquent! I’ve never related to a video more! Including the organising and making things perfect thing. I thought my personality just “changed” but it really hasn’t, just isn’t worth the energy most of the time. But occasionally I will go crazy and sort the heck out of something because of an urge and I remember how happy it can make me still. 😀

  • Reply Deirdre O'Bryan November 20, 2017 at 4:57 am

    I am so glad I came across your channel last week. Your videos are amazing and I so often find myself going “yep, me too”. I have Rheumatoid Arthritis, Ehlers-Danlos hypermobile type, gastroparesis (and so many other GI issues that my gastrointestinal doctor doesn’t think we will ever figure out what is exactly wrong) and now there is suspicion of MCTD (my grandmother had this disease as well). As many other chronically ill people my road has been hard and devastating at times. I just appreciate seeing videos of someone who lives my life. You and your wife Claudia and your pups are a truly beautiful family. Thank you so much for your videos. Watching them the past week has helped me pull myself out of low point.

  • Reply sammy may brown November 21, 2017 at 8:38 pm

    You look so pretty today! like you always look pretty, you're gorgeous

  • Reply Joanna Barrett November 23, 2017 at 8:26 am

    I just found your channel and you are truly inspiring!

  • Reply Sterre November 27, 2017 at 2:33 pm

    Thank you ❤ my mom has cfs but unfortunately she keeps doing stuff around the house and I see she's doing worse. I really wish she could just read trashy magazines like you said instead of feeling guilty about her illness even though she can't help it. This video really helps and I'm showing her this asap so maybe it'll help her as well ? thank you again for being so open and inspiring

  • Reply Lauren Michelle November 28, 2017 at 10:11 pm

    I dont have as little energy but i have chronic illness and get tired more easily i understand the perfect wants

  • Reply Sick of Reading November 29, 2017 at 9:11 pm

    I love to bake and cook, but I have Chron's Disease, and when I'm sick I can't eat. So I cook for everyone else and stick to my single scrambled egg. And then I fall asleep.

  • Reply DamaskCats December 1, 2017 at 3:18 am

    I love your videos! Thank you for bringing more awareness to disabilities. Your in-depth discussions in your videos really help me and you describe everything so well I have to share to my friends.

  • Reply Dove J December 4, 2017 at 8:11 pm

    This helped me so much, thank you <3

  • Reply Annika Victoria December 5, 2017 at 11:04 pm

    I fucking love you! <3

  • Reply Danielle Snow January 20, 2018 at 1:49 am

    Damn I thought that this video was going to be about easier ways to do things so you don't have to use so much energy

  • Reply Morgane Piraux March 22, 2018 at 10:31 pm

    I've a spondylarthritis and I fall in love with your youtube channel by a total hasard! (just googling for some real good pin-up tutorial, haha…) But I'm so glad I've found your channel because when in need to feel good, I watch a video of yours <3 So thank you to be soooo…you? What you do is really important so thank you!

  • Reply Emily Dana March 28, 2018 at 7:25 pm

    Amazing! I was just trying to explain this to someone today that I don’t want to just conserve my energy bc I also really want to have a life and go out to dinner and such even if it will make me more sick the next day.

  • Reply faas0mmer April 8, 2018 at 6:43 am

    I love this video so much. Thank you for articulating so many things that I feel.

  • Reply Elly Green April 18, 2018 at 2:47 am

    I had a professor once tell me "You are waiting your potential. You should have so much energy" after going to the guidance office instead of his class and to him I say "UUUUUGGGGGHHHHH". I don't have enough energy to go to every class every day. Like one day I may be fine all day, but the next I might be really anxious in maths and have to miss English because I am so exhausted from being so anxious and I need to listen to music and not use my brain for a few minutes. I wish people would understand that! (I Have PTSD btw)

  • Reply Cerys April 22, 2018 at 5:58 am

    I cannot thank you enough for making this video, I know many people who need to see and understand this, but even if they don't, this has really helped me accept certain parts of my illness I'm still coming to terms with. (I haven't had it for a very long time, and I haven't even been diagnosed yet, still in the process of getting a diagnosis).
    Thank you

  • Reply Yvette van Laar April 25, 2018 at 1:14 pm

    Thank you so much for this video (I know it was made about half a year ago). I too have a limited and changing amount of energy, which is very hard for people to understand. I often feel judged for the choices I make and I try not to let them bother me, but it's hard sometimes. At the same time, I don't always want to explain, because I don't always think it's other peoples business. If I do want to go for a run (when I can), but I then don't have the energy to go to a family function, that's my choice. I will come next time (when I'm able).
    Thumbs up for your positivity!

  • Reply Moss Aphelion May 8, 2018 at 10:04 am

    My gosh- I am word for word that person who Loves to run, and just Can't anymore. But, a couple days ago I finally talked my parents into getting me a wheelchair to try out, and hopefully not having to walk everywhere will mean that I get to run sometimes. Hopefully I can find the spoons for that 5 minutes.

    (I absolutely love your videos and have spent all day just going through them. You're a fantastic person, and so well spoken and eloquent about your disabilities. And also Beautiful as well! You have a Gorgeous style!)

  • Reply Shala Carter May 18, 2018 at 7:49 am

    Hello Jessica! This is the best video you have ever made. I almost can't speak well enough to get the speech to text work because I think I'm going to start bawling my eyes out. Love you

  • Reply kayla shaw May 23, 2018 at 7:52 pm

    This makes me feel so much better about everything. Able bodied ppl just wont understand how much it takes just to do one chore

  • Reply Cats are great August 19, 2018 at 8:46 pm

    I am a scout and it is a big part of me. So I go on camps four times a year. I'm usually knocked out for days afterwards, but it is worth it in the end!!!

  • Reply Vee Dragon August 28, 2018 at 1:02 am

    Dat necklace tho!

  • Reply Vee Dragon August 28, 2018 at 1:06 am

    That bit around 7:16 made me tear up, you put words to something. I have some energy intensive hobbies that I want to do so badly but the stupid chronic fatigue gets in the way of. But they're more then hobbies tho, it's part of who I am.

  • Reply Lessons In Life November 1, 2018 at 5:11 am

    All life is energy: without energy there is no life. Passion is the power of positive spiritual energy.

  • Reply Hello 1814 November 22, 2018 at 4:58 am

    I really admire you sharing this with us. I’m learning to judge less.

  • Reply I'mjustherefortheplants November 28, 2018 at 4:48 pm

    That necklace is so amazing. Ahh I love how you coordinate things.

  • Reply Wendy Baron January 2, 2019 at 6:43 am

    Jessica, I just found you and feel blessed to have. I feel like you understand me. But there is something I really am struggling with and want to know how you deal with it. The daily care with low energy and remembering to do it. Showering is one thing but what about shaving legs and pits, brushing teeth. Plucking eyebrows, lotion, ……… I could go on and on. I so desperately want to do my hair pretty or put on makeup but just can't get there. How do you make sure it all gets done. Please let me know.

  • Reply Josephine Anne Weigers January 21, 2019 at 6:31 pm

    I love this – this is so accurate and I am so thankful someone is talking about it.

  • Reply Michael Jade January 30, 2019 at 5:45 pm

    Guilty as charged! Here I was thinking, gee, I have to motivate this person to “seize the day” and do something productive. My mistaken idea of tough love. I want to believe every stage of life should be enjoyed and not “wasted”. Thank you most beautiful Lady for putting things in perspective so kindly. I think I will better appreciate the people I know or will ever meet. ?

  • Reply Anne-Lou March 12, 2019 at 10:15 pm

    Also people who are not you don't know how much spoons you need to do a certain activity. I am often told to do less uni classes when I say that I am exhausted. However uni classes are one of the things that I need least spoons for. Basic self care and a lot of things I have little to no control over whether or not to do them however take a lot of spoons (I have executive disfunctioning issues because of my autism).

  • Reply Mrs Luxe March 15, 2019 at 4:30 pm

    LOVE!!!!!

  • Reply Camilla Esmé April 3, 2019 at 2:30 pm

    What I hate is using all my energy on stuff I have to do (chores and postgrad degree) and having none left to do stuff I like, like videogames 🙁 I say to myself 'oh, at the end of the day we'll play a videogame as a reward for all the hard work' and by the end of the day I'm too exhausted to actually do it! 🙁

  • Reply Claire Child May 3, 2019 at 4:42 pm

    Fantastic video! I can really relate – Thank you ? xx

  • Reply Shannon White May 16, 2019 at 3:13 pm

    Love your videos

  • Reply Madeleine McKellar May 21, 2019 at 6:18 pm

    Thank you, yet again for another much-needed, and wonderful video!
    I know I definitely have a difficult time with NOT running myself into the ground; focusing on spending at least a little bit of time and energy on making myself actually feel a bit better always falls to the side because there's always so much I feel I "should" spend the energy on instead.
    It's so helpful hearing others who've experienced similar difficulties share what helps them, and improves their self-esteem.
    Almost every time I sit down to watch some of your videos I think "IMSOGLADIFOUNDYOURCHANNEL!!!!!!!" 😛

  • Reply super_sad May 24, 2019 at 9:32 am

    I had to drop out of school because, among other reasons, the college was not at all accessible and really felt like a waste of my personal energy, and I constantly asked why I waste my energy going to group therapy that is an hour away instead of going to college. I'm going to spend my energy on what helps me the most.

  • Reply Rachel Frisk June 7, 2019 at 5:07 pm

    I've never been told that I was wasting my energy I have been told that I am a waste of energy though

  • Reply batmanfan20101 June 12, 2019 at 6:09 pm

    This was a great reminder. Thank you!

  • Reply Awesomekittyness July 26, 2019 at 3:41 am

    As a narcoleptic, I enjoyed this video.

  • Reply Cats are great July 27, 2019 at 2:27 pm

    Luckily I am only moderatly affected by CFS (used to be alot worse) and so the problems are on a slightly different scope, but the base problem is still the same.
    I manage to go 3-4 times per week to go to school, but it is draining af. And some times I simply don't have the energy to go to school.
    But then I "waste" my spare energy on scouting and a science project. Now people tell me to stop, so that I can go to school more often, eventhough that is a) not how it works, because I do those things in a time of day where I have more energy, and the time in school will always be in the morning where I am always drained
    And b) none of their buissnes. Even if I could push to school everyday, if I stopped doing everything else, would I want that kinda life? Where I go to school, then sleep and then go to school to sleep again? Is that fair?? That I have to spend 100% of my energy on school, but they only have to spend like 30-50%? And then they make me feel bad about it.

    Sorry for the rant ???

  • Reply Ellie Nichols August 16, 2019 at 3:17 pm

    Thank you for making this video I am 110% disabled funny I know

  • Reply Michi Melody August 24, 2019 at 5:24 pm

    Or when I'm told to stop looking up things up on my conditions because it's just "taking over my life" I have a new condition I'd like to actually know about it. Pardon me for wanting to know more about POTS. My apologies. Or when I want to talk to you about it with my family members, I get that I have several conditions but the information about them keeps freaking changing! So when I try to bring it up please don't tell me I've already told you before. I get I have the memory of a gnat but they keep changing information on chronic fatigue and my other conditions. (Rant Over)

  • Reply the make up chair September 11, 2019 at 4:40 am

    well sorry i wanted to draw in the yard i was going mad inside

  • Reply floopyboo September 19, 2019 at 1:22 am

    The amount of times my husband is like why do you rush about doing stuff if you're only going to crash later. Well duh, it's because I have energy now and I'm going to crash later so USE IT NOW!!!

  • Reply Chloe Metzger September 20, 2019 at 5:45 pm

    This is so right! I never heard it phrased this way but it's true my fatigue and pain definitely stops me being the real me! Thank you Jessica 🙂

  • Reply HeatherSPRTC September 21, 2019 at 12:31 am

    "I don't get to be myself." The worst feeling.

  • Reply Alice Darner September 29, 2019 at 7:49 pm

    I kind of want to add a another thing to this list: 4. The thing that's "waste of energy" for you might as well be a way to regain energy for someone else. Making your hair (or anything else) might be a energy drain for you, but it might be a way to relax for someone else.

  • Reply Mimi Ramone October 8, 2019 at 9:39 am

    Oh girl!! Thank you for this. Nobody really knows how I spend my energy because I’m pretty solitary lately which is another whole ball of wax. But I’m getting down on myself for this seemingly useless things I find hours of entertainment doing and before you know it I’ve burned a whole day… Whoops! You are the best.

  • Reply Robin Does Everything October 13, 2019 at 2:19 pm

    Thank you so much!! I evangelize about the importance of morale and "treating yourself like a human being" all the time — it's more important, in my opinion, than pretty much anything that would be considered a "basic need." The examples I like to use all involve money instead of energy, because in the US if you're disabled significantly enough you fall into one of two categories:
    a) the highly paid motivational speaker, who most likely also writes books and a blog and does YouTube and runs a nonprofit, or, because there are way more of us than there are opportunities to do that (we can't all be highly paid motivational speakers, the market's pretty dang saturated already),
    b) the homeless person who makes his living either by panhandling or by getting into a vocational program off a wait list and being (legally!) paid less than minimum wage because Aren't You Just Soooo Grateful That We're Giving You A Job At All?

    So my favorite example to use is, "Let's say your daily food budget is $3, and you don't have access to a safe kitchen to store ingredients or cook. The most practical thing to do is spend it on a fast food value meal, which just by its sheer size will meet your calorie and maconutrient needs for the day, even though eating low-quality food like that will make you feel like crap. But if there's something you really enjoy eating, 'normal' humans can just choose to walk into the establishment that sells it and buy it for themselves in response to the craving, and it's important to give yourself that experience too, to remind yourself what being a 'normal' human feels like. When you're queuing up for, say, that pumpkin muffin at your favorite bakery, you're treating yourself in the exact same manner as all the other, much wealthier people in line, so for that moment, you're not in poverty, you're one of them. You all are there for the same reason: to acquire an "unnecessary" delicious treat for no other reason than to make yourself feel good." The power of that experience is, I believe, way more important than getting enough calories, because good morale is itself an alternative energy source!

  • Reply Abigail and Littlecat S-W October 28, 2019 at 7:05 pm

    Jessica love this! Sums up a lot for me, as now got physical side of difficulties now. So well my brain is going let's do all this….. my body is no not happening. Found you on your video with Chloe-dissociadid. You both have helped me with lots of ideas and tips. Big thanks there! Wish my energy would let me be able to look that glam…but nope the simple stuff comes first. Got some awesome support ladies that are a huge help now. And even got them and their boss asking who you and Chloe are so they can learn more too. Always have a watch when it's lie down and rest time(more often than I like to be) usually with my little cat who listens in, as he always joins me in resting. Wonder if Tilly and Walter are the same. And like them shoes mean he going in his garden for a walk too, not good when he isn't. He has got a little fan club going with the support ladies, CPN etc. Can see your two being the same. Keep up the great videos. Thanks

  • Reply Natalie Palmer November 18, 2019 at 7:40 am

    You mentioning that you feel like you can’t access a part of who you really are because of your illness really hit hard for me. I used to be the girl who was up for anything. I loved roller coasters, running around with friends all day and night, chugging a coffee to work long hours on a complex project, going on spontaneous trips, eating all kinds of food, and generally living a full and free life. All of those parts of me are now gone. I will occasionally eat a brownie or a taco even though I know it might make me feel like garbage later just because for a brief moment I feel like I’m getting that part of my life back and sometimes that’s worth it.

  • Reply Blind And Ill December 7, 2019 at 1:00 am

    Or 10 times the energy just to do the stupid dishes and you have to take a break in the middle…

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