It feels like fire in my veins. That kind of pain. The pain that makes you shake not from fear but from sheer bodily revolt. Electric shocks snap through me like I’ve been rigged up to a sadistic little taser and someone’s got a trigger-happy finger. It’s Tuesday morning, and I’m trying to hold back tears while typing this, because even typing feels like a bloody expedition.
This latest MS flare kicked off just after midnight Sunday, that weird, ghostly hour when the world is silent and your body chooses to riot. My fingers are stiff; they don’t want to move. My thoughts are flickering—like a dodgy lightbulb in a horror film.
And then it rains.
Bugsy, The Windscreen Wiper Assassin
The irony is thick: the one day I am at my most broken, the sky follows suit. Not a gentle drizzle. No, today it’s an angry, theatrical downpour. Bugsy—my ride-or-die, neurotic rescue dog—decides the windscreen wipers are obviously murderers. Every time they swipe, he lunges at the dashboard like he’s in a high-stakes action film and sinks his teeth into the once-beautiful leather seats. We have to head back to our town today. When I’ve managed to gather the strength or energy, we’ll hit the winding farm roads, half-swallowed by floods. Note to self: get life jackets to keep in car. My hands will barely grip the steering wheel, thank fuck for power steering, and my muscles will spasm with each bump in the road. And this is Africa, we have nothing but bumps in the road.
In Afrikaans, we have a saying, “ek voel vere.” It literally means, “I feel feathers,” but what it actually translates to is: I don’t give a damn. Today, I voel vere for everything outside this pain. Bills, emails, deadlines, they can all burn. I have a battle to fight, an onslaught to defend myself against, and a body to survive.
But here’s the kicker: I’m generally a sunny person. Not toxically positive, but cheerful. It’s unsettling to feel like I’ve been spiritually mugged in a dark alley of my own nervous system.
Summer’s Cruel Heat, Winter’s Damp Betrayal
Summer here hits 44° Celsius (that’s 111° Fahrenheit for my metric-challenged readers). That heat is its own private hell: it strangles your lungs, turns your brain to soup, and turns MS symptoms into a kind of demonic opera.
But winter? Oh, winter has its own weapons. Cold, wet air that drowns your lungs, drags bronchitis in like an uninvited guest. Sometimes even pneumonia.
Out of the frying pan, straight into the fucking fire.
But There’s a Silver Lining. Always.
Change is here. That counts. Even if it’s a shitstorm wrapped in fog. They say a change is as good as a holiday. Not sure who “they” are, but maybe they’ve been through something too.
Today, this is the best I can do: get through the drive. Hold Bugsy back from annihilating the car or me. Breathe through the fire in my limbs. And write it down, so tomorrow I don’t gaslight myself into thinking it wasn’t that bad.
If you’re in your own flare, of pain, grief, rage, consider this a hand squeezed in solidarity.
Hold on. Even feather-light resistance counts.
If this piece held your hand for a moment or made you feel a little less alone in your own firestorm, consider fueling my next journal entry with a warm cuppa. Bugsy and I run on caffeine and courage.
I was halfway through my master’s in architecture, you know, living on coffee and blind optimism, when the rheumatologist slapped the words “systemic lupus erythematosus” on my file. Cheers, doc. Overnight my wrists puffed up like angry balloons, and every drafting pen felt heavier than a pint of Guinness. Lecturers talked about taking time off, friends offered the usual “sure everything happens for a reason” guff. I nearly believed my career was headed for the bin.
Then one grim November night, rain lashing the windows, fever spiking so hard I was talking shite to the ceiling, I saw the shadows on the plaster twist into mad, gothic cathedrals. Proper haunted-house stuff. Half-delirious, I grabbed a sketchbook and scribbled the shapes: crooked arches, spiral staircases that went nowhere, angles that would give my old geometry teacher a heart attack. The pain blurred my lines, but it also kicked perfectionism out the door.
Weeks of bed rest turned into the best studio I never asked for. Between hot-water-bottle shifts and Netflix binges, I filled page after page with structures that bent, curved and tilted like bodies that refuse to behave. By the time I limped back to campus, I had a portfolio full of buildings that could actually cradle people with dodgy joints, light sensitivity, all that craic. My professors were gobsmacked, they called the work radical.
Fast-forward to now: clients hunt me down for offices with nooks to stretch stiff backs, galleries with railings you want to hug, studios lit so migraine brains don’t feel like they’re in a nightclub. Lupus still barges in uninvited, some mornings I’m drafting from bed, stylus propped against a feck-off stack of pillows, but it’s taught me architecture isn’t about rigid grids; it’s about sheltering messy, miraculous humans.
Yeah, illness nicks plenty, but it also leaves breadcrumbs to new ideas. Every dawn, joints creaking like old floorboards, I glance at those ceiling shadows and think: grand, let’s build something weird and kind today.
If you have a story to tell or a question for the team, email us at hello@kateandginger.com
A few nights ago, I dreamt my best friend stole my boyfriend—and to add insult to injury, everyone was mad at me for not being happy for them. Excuse me?? In what universe is that a reasonable emotional response? Apparently, in Dreamland, I’m the villain for having feelings. Love that for me.
Then last night I dreamt I was pregnant. I’m 48. My ovaries audibly laughed when I woke up. But in the dream, I was wearing my boyfriend’s graphic tees, proudly showing off my bump like some Pinterest-worthy mum-to-be. The subconscious is wild.
In real life, I’ve been having weird, sweat-inducing, doubled-over-in-agony pelvic pains and suspect it’s time to say goodbye to the IUD that’s been living rent-free in my uterus for a while now. I’ve been dreading having it removed. Not quite as bad as having it inserted, but still—hello!!! A little anaesthesia wouldn’t hurt.
I mentioned this to my Mother, and, bless her, she warned me to be careful I don’t fall pregnant. At 48… with cyst-infested ovaries? It would be an act of the divine. (SFX: angels singing)
Still, the dream left a strange warmth behind. I don’t have children—I couldn’t (unless you count the four-legged, fur-covered kind)—but that dream baby felt oddly real. Maybe it’s just hormones. Or gas. Or the fact that I became an aunt again recently, and my new niece is absolute perfection. I’d love to be more present in my nieces’ and nephews’ lives, but I live on the other side of the world. I suppose that makes me a digital aunty. A pixelated presence with a Wi-Fi connection and a whole lot of love.
It’s weird. And a little sad. Call me old-fashioned, but I want to hug the people I love. Not just double-tap their faces on a screen.
Speaking of hugs—Bugsy (my dog) prefers his affection delivered in flying leaps and enthusiastic face-licks. Not exactly subtle, but I get the message. Imagine if humans did that. Note to self: Get some tea tree face wash.
So yes, last weekend we stayed up talking till 3 am, laughing like teenagers, like there wasn’t a chronic illness or middle age looming in the background. Was it irresponsible? Definitely. Was it worth it? Absolutely. Sometimes, connection matters more than rest. (MS doesn’t care about my emotional growth. It wants naps. Now.) Still, sometimes the pain is worth the priceless joy of two souls connecting.
Which brings me to today: I am completely out of spoons. No cutlery left in the drawer. My battery is flat, my tank’s empty, the engine won’t even turn over. I had another one of those weird spells yesterday where I just… shut down. One minute I was upright, the next I was horizontal and unconscious—like a phone that forgot to warn you it’s on 1%. It’s happening more often. Still trying to figure out what it is.
I made a beautiful lunch disguised as breakfast. (Don’t come for me, I don’t eat before 11 am unless bribed.) Toasted seed loaf, smashed avo, egg, spinach, feta, and edible flowers—because I’m clearly in my edible flower era. They make the plate look happy. And honestly, if your food can’t spark a little joy, what even is the point?
Anyway, I’m rambling. That’s what happens when you’re sleep-deprived and slightly hormonal with a head full of dreams and a body full of meh. Someone, please bring me coffee. Or a hug. Or maybe just a soft place to nap where no one expects anything from me for at least 12 hours.
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.
