To share with loved ones (or anyone) trying to understand the depth of exhaustion, fatigue, lack of energy that accompanies chronic illness/ autoimmune conditions.
.
Christine Miserandino (CM) reads her "Spoon Theory":
7️⃣2️⃣ Oats as Cooked Oatmeal or Fermented Overnight. Rolled, Steel Cut, or Whole Groat. Prebiotic, Probiotic, not Idiotic via Dr. Richard Matthews.: healthunlocked.com/cure-art...
5️⃣6️⃣ Osteoarthritis: Prevented with Diet & Exercise? University of Surrey (U.K.) study in 'Nature Reviews Rheumatology': healthunlocked.com/ra-warri...
4️⃣3️⃣ "How U.S. Health Care Became Big Business": Medical Journalist, Dr. Elisabeth Rosenthal talks with NPR's Terry Gross: healthunlocked.com/ra-warri...
3️⃣8️⃣ "A Kitchen Fairy Tale" by Iida, How She Healed Herself with a Plant-Based Diet (according to 'Tribe Magazine'): healthunlocked.com/nras/pos...
3️⃣7️⃣ Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References: healthunlocked.com/nras/pos...
2️⃣2️⃣ Roxana, 'The Sofia Vergara of Peru' (& now 'The States'), Improves Her Hashimoto's (Hypothyroid) & Rheumatoid Arthritis (RA): healthunlocked.com/thyroidu...
2️⃣ FREE 3-Part 'Serology (RF, ACPA, Anti-CCP, ANAs, ANCA) in Rheumatology' Series from Dr. Robert Coughlan's 'Rheumatology Toolbox': healthunlocked.com/nras/pos...
"The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
One of the tenets of the spoon theory is that many people with disabilities or chronic illness must carefully plan their daily activities to conserve their spoons, while most people without any disabilities or chronic illnesses do not need to worry about running out.[1] Because healthy people do not feel the impact of spending spoons for mundane tasks such as bathing and getting dressed, they may not realize the amount of energy expended by chronically ill or disabled people to get through the day.[2]
Spoons are widely discussed within autoimmune, disability, and other chronic illness communities,[3][4] but the concept of spoons is otherwise considered a neologism. The term Spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory.[2]"
[Even as it was happening to me, I couldn't understand it, grasp it -- never mind try to explain it to anyone else -- (even nearest & dearest) who witnessed it! 😳 😬 😂 Can't imagine anyone who's never experienced, observed, or heard about it to truly grasp it.]
______
They are so cute . . adorable . . . "nibble-able" -- conveniently stacked like a shish kabob 🍢 (& perhaps just as tasty 😋 😳 😆 🙃 ).
[More (delectable) cuties above under "Spooning".]
Other creations (Age Simulation Suits) that attempt to convey physical impairments of 'aging', declining health -- debilitations of RA & other crippling diseases:
.
Age Simulation Suit - Walking in our patients' shoes:
Perhaps these types of ingenious contraptions give able-bodied folks a glimpse -- a tiny taste -- of disability. 😳 😱 🙃
______
Fortunately, no one's required to sleep in these simulation suits -- thereby missing the more unrelenting, 'round-the-clock' experience. 😳 🙃
Could you imagine that?! 😂
Perhaps too (cruel? inhumane?) heavy a dose of reality⁉️ 😳 😱 😂
______
Also, these suits don't appear to (yet) be able to 'simulate' chronic fatigue (which CM's 'Spoon Theory' addresses), brain fog, nor unrelenting pain . . . 😳 😱 😂
.
Perhaps additional implements may help convey a more full experience:
🔪 🔨 🗜 ⛏ 📌 ⚒ 🔥 ❄️ 💥
.
😂 😂 😂
.
[Sorry, sorry . . . odd sense of humour . . . 😳 🙃 😂 ]
______
Oh, just noticed acronym for Age Simulation Suit is: 🌙🌙
.
😳 😄 🙃
.
Hmm . . . What about renaming to Age-Related Simulation Endevour . . . 🤔
(Hmm . . . guess that doesn't quite work either . . . 😉 )
It’s ‘battling disease’, manwithnoname, precisely as Gnarli noted.
It’s a 24/7 battle that quietly ‘rages on’ that all our bodily energy expends ‘fighting’ ⚔️ 🤺 the war around the clock 🕐🕕🕚 , day 📅 after day 📆 after day 🗓 . . .
Your body is rightfully exhausted 😴 💤 from wrestling 🤼♀️ a never-ending battle each & every day.
[Maybe think of it as something like you’re body is running a marathon every day? 🏃♂️ . . .🏃♂️ . . .🏃♂️ Your body’s tired, exhausted, run-down from running it’s ‘daily marathon’. It needs a lot of sleep/ rest 🛌 to recuperate.]
Until disease/ inflammation 🔥 (the daily marathon) subsides — becomes ‘well managed’ — exhaustion will remain ‘the norm’.
Wishing you well working with your medics to find ways to improve disease management, manwithnoname. 😌 🙏 🍀 🌺 🌞
.
Aside: If you’re interested in a bit more about deep, restorative sleep 🛌 , Gnarli & manwithnoname, sleep scientist 👨🔬 Matthew Walker’s work might be of interest ( healthunlocked.com/cure-art... ) — provided it doesn’t put you to sleep 😴 💤 . . . . ☺️
Bingo, Dunk! 👍👍 Don’t know if you’ve already heard of Dr. Brooke Goldner 👩🏻⚕️ ( healthunlocked.com/cure-art... ), but her work with Lupus & Autoimmune illness might interest you? 🤔
.
Ditto, YanniBaci/ ‘Deb from Australia’ 🇦🇺 . ☺️ 👍
If such things interest you, kindly pop over & have a look-see 👀 .
While disease is ‘active’, your body is busy at work — around the clock 🕐 🕕 🕙 (24/7) — "fighting" 😖🥊🥊 the disease.
In other words (in perhaps over simple terms), your body’s in ‘overdrive’ wrestling 🤼♀️ with inflammation 🔥, so you’re going to be thoroughly, utterly exhausted. 🤤
(It’s not ‘lack of willpower’ or ‘laziness’ or whatever ‘label’ uninformed onlookers may mistakenly slap on to the debilitating exhaustion. 😵 )
It’s your body relentlessly, tirelessly, heroically, fighting 👊👊 a mighty foe 🐉 — keeping you alive. 🤯
So, until that inflammation/ disease dissipates/ subdues, you’ll likely continue to be chronically exhausted/ fatigued. 😴 🤤 😵
Please 🙏 , kindly try to take as a good a care of yourself as you possibly can, YanniBaci/ Deb, to subdue ‘the beast’ 🐲🐉 .
Wishing you both, Dunk & Deb, the very best. 😌 🙏 🍀 🌺 🌞
.
[Oh . . . if this helps at all in grasping the nature/ depth of the fatigue/ exhaustion, “The Spoon Theory" 🥄 ( healthunlocked.com/nras/pos... ) sometimes does the trick 🤹♀️ .]
(Merely my simple (simplistic?) understanding of exhaustion/ fatigue? 🤷♀️ )
Don’t think trying to do ‘more’ exercise is going to do anything towards increasing energy 🔋⚡️⚡️ — decreasing exhaustion 🤤 😴 . In fact, quite the opposite. 😳
Sounds like your body is already busily expending all its energy ⚡️⚡️ fighting/ battling inflammation around the clock (thus the fatigue/ exhaustion) & is desperately seeking respite — restorative rest, recuperation. (Merely my layman’s opinion. 🤷♂️ )
Maybe ‘disease activity’ is busy percolating (using up your precious energy ⚡️⚡️ ) & needs to be better managed/ controlled by whatever means works well for you? 🤔
Hoping you find the deep, restorative energy soon, Nettac. 😌 🙏 🍀 🌺 🌞
Fully, understood. 😌 🙏 Snail-paced 🐌 walk where a turtle 🐢 could easily outrun us. 😯
[Similarly, had near bed-bound periods of utter, relentless exhaustion 🤤 😴 😵. Could barely manage ‘essentials’: toilet 🚽 , feeding 🥣 , ‘resting’ 🛌 . Forget bathing 🛀 ! 😳 (That had to be ‘worked up to’. 😳 Pee yew 🙊 . Could scrape ‘the stink’ 🧟♂️🧟♀️ off!) 🤯 😆 . ]
Vitamin D 💊 (physician testing/ prescribing high-loading dose followed by lower maintenance dose) & anaemia of chronic illness (which tie into chronic fatigue/ exhaustion noted above) may be a points of research 🕵️♀️ 🔎, if interested , Nettac? 🤔
Yes indeed, gawd help those with children 👨👩👧👦👨👩👦👦👨👩👧👧 to raise, careers (👮♀️👷♂️💂♀️🕵️♂️👩⚕️👨🌾👩🍳👨🎓👩🏫👨🏭👩💻👨💼👩🔧👨🔬👩🎨👨🚒👩✈️👩🚀👩⚖️🎅 ) to maintain — demanding lives 🙍♀️🙍♂️ to ‘live’ while struggling 🤦♀️🤦♂️ with illness 🤕 🤢 😵 .
.
As far as up-keeping house chores 🏠 , why remove 'protective layer of coating' (aka ‘dust’) from furnishings? Why'hoover free-range wildlife grazings’ (‘crumbs’ for critters) from floors/ carpets? ☺️
Easing up on ‘unrealistic expectations’ of ourselves, ‘letting go’ of less important things, & ‘asking for help’ when we need it is sometimes a mind-easing way to go? 🤔
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
