From: Jemma Bella, _jemma_bella on Tiktok Constantly using up all your spoons on things that everyone else takes for granted

The Spoon Theory for energy-limiting chronic illnesses is explained here: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory

The Spoon Theory doesn't mention the postexertional aspect of some conditions like ME/CFS and some people with long Covid

How to Explain the Fluidity of Needs Based on Energy Levels

Friday, March 15, 2024

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How to Explain the Fluidity of Needs Based on Energy Levels

Neurodivergent community, I have figured out a way to explain the fluidity of our needs based on our energy levels. Although, if one thinks about it, it applies to everyone. Imagine everyone has a Stamina/Energy Bar above their heads; we’ll use the color Yellow to represent the stamina available, and Grey to represent the stamina used. And every task, every action, has a set amount, a number, assigned to it. Now imagine every time someone picks up their bag, turns their head, moves in any way, speaks, does ANYTHING, the yellow area either steadily shrinks, or drops all at once to a specific point, while the rest of the bar it is greyed out. Now imagine when someone eats, drinks, sleeps, relaxes, RESTS, the yellow area of the bar steadily increases over time, shrinking the grey area. But what happens if we use all our energy during the day? Or go into the negative? If we don’t recoup stamina/energy throughout the day and while sleeping, then our Stamina Bar, going into the next day, is mostly greyed out. If there’s any yellow at all. We could have pushed the grey area past 0, into the negative. Now, because we’re either running on empty, or borrowing from tomorrow, tasks we could easily do yesterday cannot be done today, or they’re done “half-assed”, because we don’t have the Stamina to do them “properly”. We’d need more REST to replenish our stamina. We’d either need to INCREASE the size of the yellow area of the Stamina Bar and/or DECREASE the size of the grey area to bring us above 0. If we borrow too much of tomorrow, if we extend the grey area of the Stamina Bar too far past 0, it WILL cause burn out. AND irreparable damage if done too often and/or if we’re burnt out, in the negative, past 0, for too long.

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Just a little nudge… . If you have taken part or still want to take part in the @decodemestudy you can do so and be sure to follow all the steps at your own pace . Even if you are only eligible for the questionnaire - you won’t know if you’re required to do the spit kit until after - but it’s a big help towards the findings of this study . Link in bio and stories . . . #SpitToDecodeME #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #PEM #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/Cn124aAsVnu/?igshid=NGJjMDIxMWI=

Hello friends, tomorrow’s poem is about not recognizing myself and not knowing how to love myself. Tomorrow, 10am 👀😏

Most people think of getting sick as a part of life. You get sick, you go to the doctor, take your medicine, and like “magic” you get better, and afterwards you go on with your life as if nothing happened. Those few sleepless nights with stuffed noses, stomach aches, and body pain are nothing compared to the long, healthy life that most of them will live. ☆ That’s the funny thing about chronic pain and chronic illness. You’re healthy… until you’re not. Some days you have more energy, or more spoons, and others, you don’t. Last week I was staying in bed every day until 2pm because I wasn’t sleeping at night, wasn’t feeling well, and played it off as “staying up all night reading” to my family because, I am a bookworm, and that is believable to the people I love. I almost dropped out of NaNoWriMo this year because, I have just felt like absolute shit. ☆ I also have a huge week ahead between an Allergist appointment, having to go to Rush on Tuesday, a DEXA scan Wednesday, and more that I haven’t even called to set up yet. All the while my little brother turns 21 on Monday, and I NEED to get my shit together enough to make his birthday pie, and the casserole that he asked for because this is his 21st birthday, and I cannot drop the ball here. Our mom passed away in 2020, and she can’t be here to make it a good birthday so I HAVE to. ☆ I am fucking STRESSED. ☆ #EDS #EhlersDanlos #Stress #Insomnia #Depression #ChronicIllness #ChronicallyIll #Insomniac #Spoonie #SpoonTheory #POTS #ChronicPain #CRPS #InvisibleIllness #ButYouDontLookSick #Disabled #DisabilityAwareness #AuDHD #ChronicPainAwareness #DisabledCreator #MCAS #PTSD #Dysautonomia #InternationalDayofDisability #MentalIllness #nanowrimo #aspiringauthor https://www.instagram.com/p/CluFGucv7Bc/?igshid=NGJjMDIxMWI=

i cant wait for the WEEKENd so i can watch my shoes and rest in peace

i barely have any spoons left today and i need to attend a class....

My Favourite Read of 2022

Book Review:

I really enjoyed Grace with her sass, whit and fantastically accurate facts. Grace is such an important character for those who live with chronic illness and disability and very educational to those those who have minimal experience with the topic. I think this is the first book based on a person with chronic illness or disability that I've read in a long time that doesn't end in Münchhausen by proxy or some inspiration disability-porn of someone being a better person because they loved someone who was sick or even just glorifying it by glossing over the hard parts or not showing the awkward social interactions, this book is real and captures so many parts of Grace's life, her hobbies, her friendships, her family dynamic, it doesn't solely surround her illness which is the whole point, Grace doesn't want to be known as the 'Sick girl' and it's written in a way that we fall in love with Grace and we learn to understand her through her views and experiences. It shows the true struggle of what it's like for a REAL teenager in high school not only being a new student to a new school, but a teenager trying to life their life as 'normally' as possible while juggling their illness on top, and just wanting to be included and seen as themselves not as their illness. I enjoyed so many of the characters and the dialogue in this book, I laughed, I cried, I had moments that provoked deep thoughts and conversations...and I learned a lot of fun, useless trivia that now lives in my brain rent free. This book is fantastically written, it kept me interested and hooked from the first few pages. This book has also been published in a way that I could read with minimal frustration and anxiety, as a person with dyslexia I am grateful to the author who made me feel seen by choosing a font and sizing that gave me the joy of holding and reading a real book again, I often listen to audiobooks as I struggle with the fonts, spacing and sizing of most books, so I thank you, Avery, I hope there will be many people all around the world that will read this book and feel seen just as I do.

https://avery-mcdougall.square.site/

https://www.tiktok.com/@averymcdougall.author

Here is our exclusively demandable product. Check out our Latest Real Horn Made Spoons. This Spoon has always been an attractive product with amazing art and shape. 💙✨🤗 . . For More Details, Inquries and Wholesale Order / Bulk Quantity Mail Us : [email protected] 📤📥 . Or WhatsApp Us At : +91 7452861066 📞☎️ . BESPOKE DESIGN / CUSTOM DESIGN FACILITY AVAILABLE 🔨👷‍♂️🛃 . . #spoon #spoonfeed #spoonie #spooncarving #spoonielife #spooncarver #spooniesupport #spoontheory #spoons #hornspoon #hornspoons #hornspoonset #hornspoonfork #horncutlery #hornmadecutlery #hornmadefork #hornscraft #horncraft (at Sarai Tarin, Uttar Pradesh, India) https://www.instagram.com/p/CkIEIcyrJpm/?igshid=NGJjMDIxMWI=

Emergency spoons! Glow in the dark is definitely a feature so you can always find your spoons even when it feels too dark around you ♡ I heard you loud and clear! Pre-orders on etsy now! #mentalhealth #spoontheory #mentalhealthawareness #spoons # https://www.instagram.com/p/Cj4hRagORBQ/?igshid=NGJjMDIxMWI=

🤣🤣🤣 Step back satan! - 📸 Via 📷Unknown, tag to credit! - Tag someone who needs to see this💙 - Follow 👉 @sick_gone for more content💓🌼🥰 ======================= Follow 👉 @sick_gone for more content💓🌼🥰 - - - - #spoonielife#potssyndrome#mecfs#raisingawareness#chronicmigraines#spooniesupport#chroniclyme#chronicillnessmemes#notalldisabilitiesarevisible#chronicpainsurvivor#meawareness#spooniesunite#fibromyalgiaproblems#chronicpainlife#costochondritis#spoontheory#chronicpainmanagement Reposted from @spooniesaw https://www.instagram.com/p/Ci8jB-UOobv/?igshid=NGJjMDIxMWI=

🖤🖤🖤🖤 • • • • #makeupartist #makeuptransformation #maccosmetics #curlyhairkillas #curlycommunity #curlygirlcollective #instacurls #photofotheday #invisibleillness #invisibledisability #spoonielife #chronicpainawareness #spoontheory #edsawareness #babewithamobilityaid #endowarrior #dysautonomia #spooniestrong #zebrastrong #bodyacceptance #neutrality #model #getitgirl #inspiredmakeup #biracial (at Pacific Northwest) https://www.instagram.com/p/ChvBc0sP9pQ/?igshid=NGJjMDIxMWI=

Healing is not linear 💚 ... and sometimes you feel like your own ghost in your own life! 💜 Heilung verläuft nicht linear, Fort- sowie Rückschritte wechseln sich gegenseitig ab und manchmal bedeutet Heilung sogar Stillstand. ⛵ | | | #nichtgenesen #tbt #reha #longcovidrecovery #selbsthilfeblog #unsichtbarkrank #entstigmatisierung #hypothyreose #gesundheit #mecfsawareness #bewusstgesund #chronicfatigueawareness #autoimmunthyreoiditis #postcovid #happymoments #fibromyalgie #pacing #lwssyndrom #spoontheory #bewusstleben https://www.instagram.com/p/ChaU7XNo2n7/?igshid=NGJjMDIxMWI=

STREAM ANNOUNCEMENT 11/26/2023

Because this one was being a dumbass (notice, I said being, not I am; difference), and lost track of time, this one woke up exhausted. For the curious, I looked at the clock last night, saw it was 10:something, looked back later and it was past midnight. Then, I took my melatonin, was wondering why I wasn’t tired, then saw I left the pills on the counter. I didn’t get to bed until after 2 in…

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𝗗𝗲𝗰𝗼𝗱𝗲𝗠𝗘’𝘀 𝗙𝗶𝗿𝘀𝘁 𝗠𝗼𝗻𝘁𝗵 . It’s up and running and closing in on its first month proper . Still time to sign up and be part of history for this awful condition . Read the blog - here for Facebook: https://www.decodeme.org.uk/decodeme-questionnaire-shining-a-light-on-the-me-cfs-community/ . On insta link is in bio and on my stories . . . #ME #CFS #Relapse #spoonie #spoonies #spoonieandparenting #spoonieparent #papaandrory #andattietoo #dontforgetmama #berkshiredaddies #chronicillness #warrior #millionsmissing #invisibleillness #spoontheory #decodeme #decodemestudy #butyoudontlooksick #ouch #aches #pains #dizzy #sensitivity #brainfog #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #pwME (at Windsor, Berkshire) https://www.instagram.com/p/CjSWQ0SM09v/?igshid=NGJjMDIxMWI=

Monday I shared a poem on @substackinc about my depression and how it creeps up on me, and what those sensations feel like in my body. See my stories for the link to that post, or subscribe to my Substack using the link in my bio ✍🏻✨

Total vent here. (No hate to OP because they are 100% spot on.) My whole life I always felt different. My concerns were chalked up to “growing pains” that I was just clumsy, or a klutz, and that’s why my balance was off and ankles roll constantly. (How quirky.) That I bruise so fucking badly just because I’m pale, and that getting some sleep, sunshine, and taking a multivitamin will help. I wasn’t quirky. I was SICK. I have genetic conditions and abnormalities that come with prices, and vices, and put me in the place of mental and physical crisis CONSTANTLY. And it’s not my fault… losing weight won’t help. Yoga, essential oils, all that bullshit CANNOT fix me. So please be patient, don’t tell me to “get some sleep” or laugh that the reason I’m tired all the time is because I’m lazy, or up on my phone, or reading. If I could sleep, I would. I would LOVE to get some sleep but that’s not always a viable option. I am not a failed horse. I’m a zebra. 🦓 #Autism #EDS #EhlersDanlos #Stress #Insomnia #Depression #ChronicIllness #ChronicallyIll #ZebraGang #Insomniac #Spoonie #NoSpoons #SpoonTheory #POTS #ChronicPain #CRPS #InvisibleIllness #ButYouDontLookSick #Disabled #DisabilityAwareness #ActuallyAutistic #ADHD #BabeWithMobilityAids #DisabilityEducation #ChronicPainAwareness #SpoonieLife #ChronicPainLife #DisabledCreator #MCAS #PTSD #Dysautonomia #InvisibleDisability #SickAutoimmuneDisease #MentalIllness https://www.instagram.com/p/CkT99ZRJtkw/?igshid=NGJjMDIxMWI=