Let me just say this upfront: I’m not tired. I’m fatigued. And if you don’t know the difference, lucky you. Really.
Right now, I’m writing this from bed. Not in a “cozy Sunday morning with a latte and a little Netflix” kind of way. No. I’m in bed because my body has straight-up refused to participate in today. Multiple Sclerosis fatigue is not just tiredness; it’s full-body betrayal. It’s like your limbs have turned to concrete and your brain is wrapped in molasses and you’re supposed to keep going like everything’s fine. Spoiler: it’s not.
A doctor once explained it like this: if someone without a chronic illness wants to understand what MS fatigue feels like, they’d need to stay awake and upright for three days straight. Then try to function like a normal human. That’s the starting line.
The Daily Tradeoff: Do Something… or Everything Falls Apart
Lately, I’ve been doing too much. And when I push too hard, I pay. The interest rate on energy debt with MS is brutal. I need rest, like, non-negotiable, stop-the-world rest, but life doesn’t exactly come with a nap button.
I wish I were exaggerating when I say I need a midday nap just to function. But who the fuck has time for that? I’m not a toddler in daycare. I’m a woman with a life and deadlines and a cockroach infestation that’s slowly becoming a B-movie horror plot.
Oh Yeah, Let’s Talk About the Bugs
Because apparently fatigue and hunger weren’t enough, I’ve also got roaches. Big ones. The kind that have been around since the dinosaurs and act like they pay rent.
The foundation in my cottage shifted recently, which basically opened the gates of hell and invited every insect in the area to move in. Ants, roaches, you name it, they’re here. It’s a full-on wildlife convention here at Songbird Cottage. And I am not okay with it.
Last night, I was watching M*A*S*H in bed when Big Pappa Roach decided to take a stroll across my floor. Bugsy took one look, shrugged, and went back to sleep. Thanks for nothing, bro.
Love, Lattes, and Losing It
What I want more than anything right now is for my boyfriend to walk in with a cappuccino in one hand, that warm smile of his on his face, and just hold me for a minute. That kind of hug that smells like roasted coffee and promises you’re not in this alone. But no, he’s at work. And life doesn’t pause for nobody.
So I’ll get up. Slowly. I’ll do what I can. I’ll fight the roach war and do some cleaning. Bugsy will freak out over the mop and attack it. And honestly? I might give up halfway through and let him battle it while I lie back down. He’ll be proud of himself for protecting us, which will give his self-esteem a great boost.
Because this is the reality: MS fatigue isn’t lazy. It’s not optional. It’s not something you can just push through with a good attitude and positive vibes.
But still, I keep going, I try. Because I want to live. I want fruit. I want a clean house. I will not give up and I will conquer this world, one little itty bitty step at a time. And some days, just wanting is enough to get me moving. Kind of.
What about you? Ever felt like your body staged a coup and forgot to notify your plans?
What Is Spoon Theory? A Simple Way to Understand Chronic Illness and Fatigue
You’ve probably heard a loved one say, “I don’t have the spoons for that today.” Maybe you nodded along politely. Maybe you were confused.
Let’s break it down — because this little metaphor? It’s a game-changer in understanding what it’s really like to live with chronic illness, chronic pain, or fatigue-based conditions.
Spoon Theory 101: Where It Came From
Spoon Theory was created by Christine Miserandino, a writer and lupus warrior, during a conversation with a friend at a diner. Her friend asked what it was really like to live with a chronic illness.
Christine grabbed spoons from nearby tables and handed them over — twelve of them.
Each spoon, she explained, represented a unit of energy. And unlike healthy people who wake up with an unlimited number of spoons, people with chronic illness wake up with a limited supply.
Getting out of bed? That’s a spoon. Taking a shower? Spoon. Making breakfast? Spoon. Now imagine having only 6 left… and it’s 9 a.m.
Why Spoon Theory Matters
Spoon Theory helps people visualize what it’s like to live in a body that’s constantly budgeting energy. It explains why your chronically ill friend sometimes cancels plans. Or seems “fine” one day, and completely wiped out the next.
It isn’t about being lazy. It isn’t about being unreliable. It’s about managing a limited resource — energy — and trying to survive in a world that expects limitless output.
The Spoon Math of Chronic Illness
Here’s how a typical day might look for someone with chronic fatigue, MS, fibromyalgia, or another invisible illness:
Get dressed = 1 spoon
Make a meal = 2 spoons
Commute or school drop-off = 2 spoons
Work or errands = 3 spoons
Socializing = 2 spoons
Crash in bed by 6 p.m., out of spoons = 0
Now add pain. Add brain fog. Add guilt. Sometimes, even thinking costs a spoon.
What Healthy People Need to Know
They’re Not Making Excuses If someone says, “I don’t have the spoons today,” they’re not blowing you off. They’re out of fuel — and pushing through could mean crashing for days.
“Looking Fine” Doesn’t Mean Feeling Fine Most spoonies become masters of hiding their symptoms. Just because they look okay doesn’t mean they aren’t struggling internally.
Every Spoon Counts Helping with a meal, sending a kind message, or giving them space to rest can make a world of difference. It helps them save spoons for the things that really matter — like staying connected with people they care about.
Spoon Theory Isn’t Just a Metaphor — It’s a Lifeline
For many living with chronic illness, Spoon Theory has given them a language. A way to explain what it feels like to live in a body that doesn’t always cooperate. A way to ask for grace — without having to justify their existence.
If someone you love says they’re “low on spoons,” believe them. Offer support. Offer space. And remember: empathy doesn’t cost a thing.
Want to better support the chronically ill people in your life? Start by listening. Start by learning. And maybe, start by asking: “How many spoons do you have today?”
🥄 How Many Spoons Do Daily Activities Cost?
Understanding the “cost” of everyday tasks can offer valuable insight into the challenges faced by those with chronic illnesses. Here’s a breakdown inspired by the Burning Nights CRPS article:
1 Spoon Activities: 🥄
Getting out of bed
Brushing your teeth
Taking medication
Watching TV for an hour
Washing your hair
Listening to music
2 Spoon Activities: 🥄🥄
Making breakfast
Taking a shower (note: for some, this might require 3 spoons)
Drying and styling hair
Brushing hair
Managing daily or weekly medications
Reading
Studying for an hour
Making a phone call
3 Spoon Activities: 🥄🥄🥄
Cooking a meal
Light housework
Meeting a friend at home
Driving somewhere
Folding laundry
Caring for pets
Attending a medical appointment
Climbing stairs
4 Spoon Activities: 🥄🥄🥄🥄
Going to work
Attending school
Shopping
Seeing a specialist (especially with long waiting times)
Waiting for and using public transport
Ironing
Taking care of children
5 Spoon Activities: 🥄🥄🥄🥄🥄
Going out for coffee or a meal
Gardening
Studying and attending lectures/classes
Participating in social events with friends
It’s important to note that these values can vary based on individual circumstances and the nature of one’s chronic illness. Factors like flare-ups or particularly challenging days can increase the “spoon cost” of these activities.
🔄 Restoring Spoons: Self-Care and Recovery
While rest is a primary way to regain energy, individuals with chronic illnesses often find that certain activities can help replenish their spoons:
Mindfulness meditation
Listening to or reading positive affirmations
Engaging in relaxation techniques
Practicing yoga or chair yoga
Journaling
Adult colouring or Zentangle
Breathing exercises
Pursuing hobbies or listening to podcasts
Listening to music
Getting a massage
Taking a nap
Laughing
Spending time in nature or simply sitting by an open window
Remember, self-care isn’t selfish. It’s a necessary component of managing chronic illness.
No one tells you how exhausting it is to be polite about being chronically ill.
No one warns you that one of the hardest parts won’t be the symptoms — it’ll be the explaining, the justifying, the pretending-you’re-fine smile you glue to your face at doctor’s offices, family dinners, and the school gate.
Living with chronic illness doesn’t look like a movie montage. It looks like the same unwashed hair three days in a row. It looks like forgetting words mid-sentence. It looks like cancelling — again — and hating yourself for it.
That Chronic Fatigue? It’s Not Tired. It’s Poisoned.
Chronic fatigue isn’t just being tired. It’s body-in-concrete exhaustion that makes brushing your teeth feel like a marathon. It’s lying in bed hurting from doing nothing. And still, you explain it like you’re “just run down” because people don’t understand what this kind of fatigue actually is. Experts say that for the average person to understand what chronic fatigue feels like, they would need to stay awake for three days straight and then attempt to continue with life as though nothing is wrong.
You Become an Expert at Smiling Through Chronic Pain
You learn to say “I’m fine” while your joints are on fire and your head feels like it’s splitting in two. Because being visibly sick makes people uncomfortable. So, like many living with an invisible illness, you become a master at hiding your truth.
You Feel Guilty All the Time
Guilty for being ill. Guilty for cancelling. Guilty for being “negative.” Guilt becomes your shadow — especially in a world that expects constant productivity. And chronic illness doesn’t come with sick leave for your emotions. It certainly doesn’t give you sick leave for being sick.
You Lose Friends — and You Blame Yourself
Some people slowly drift when you stop being “fun.” Others disappear completely the moment you need support. You start to wonder if you’re just too much — when really, they just weren’t equipped to stay.
Your Body Becomes a Full-Time Job
Living with chronic illness means appointments, test results, meds, insurance, symptom tracking. You become your own medical manager. And half the time, doctors still shrug and say, “We don’t really know.” Ironically, chronically ill people develop skills that could run circles around the top CEOs; we just don’t have the bodies to be able to do the job.
You Start to Doubt Yourself
When your labs come back “normal,” when a doctor dismisses your symptoms, when people say “but you look great” — you begin to gaslight yourself. You wonder if it’s all in your head. This is the quiet cruelty of misunderstood chronic illness.
You Become Fierce in Ways You Never Expected
You stop people-pleasing. Believe me. This is one of the first changes you’ll experience. You learn how to say no, how to rest, how to speak up. Your survival depends on this. Chronic illness teaches you how to be soft and strong — even on the days you’re barely holding it together.
You’re Not Weak — You’re Living a Life Most People Couldn’t Handle
Being chronically ill every day is hard. It’s unseen, often misunderstood, and deeply personal. But you’re not alone. There’s nothing wrong with you. And you are more than your diagnosis.
You’re just learning how to carry the weight of your reality — and that’s a strength no one talks about enough.
