I was walking, just walking, and suddenly the signal from my brain went silent like a dropped call. It’s the second time this has happened to me. It’s really strange because it takes a moment for the signal to reconnect, and during that moment, which feels far longer than it actually is, my arms flail about trying to find something to grab hold of, even though it is an entirely pointless exercise. I hit the ground hard, narrowly escaping hitting my head against a brick step. I’ve torn the same calf muscle four times. I know the pain intimately, like a pain you thought you’d outgrown but still clings like smoke to your clothes.
But this isn’t about the fall. Not really. It’s the shrinking in someone’s eyes when I say, “I have MS.”
Multiple Sclerosis.
You’ve heard the name. Maybe you’ve seen a celebrity wear a ribbon or a TikToker do a day-in-my-life with a cane and a glossy filter. But unless it’s in your body, or someone you love is limping through this mess, you don’t really know.
So let me tell you.
MS is a full-time job I never applied for
Multiple Sclerosis is an autoimmune disease where your body, your own beautiful, broken, fiercely trying body, decides to eat away at your nerves. The myelin sheath that protects your neurons gets attacked, and like frayed electrical wires, the signals get patchy. Delayed. Disrupted. Or gone entirely.
It’s not predictable. It’s not curable. It’s not one-size-fits-all. No, yoga and oat milk matcha spirulina chia smoothies are not going to cure it. Yes, I’ve tried.
But more to the point, it sure as hell isn’t funny.
For me, it means:
Pain that stabs and twists like barbed wire in my calves.
Spasticity that locks my legs in place like rusted bolts.
Hands that stiffen and fingers that won’t move.
Fatigue that isn’t “tired.” It’s “my bones have been replaced with concrete and I can’t lift my arms to wash my hair.”
Brain fog that makes me lose my train of thought mid-sentence, or forget words like “kettle” and “Thursday.”
Vision blurring, numb hands, trouble swallowing, and the occasional delightful surprise of losing control of my own limbs.
Painful electrical pulses that shoot through your body, anywhere, any time, every day. The ones I rarely talk about out loud.
And let’s not forget the big daddy of dickheads. The hug that crushes your lungs and stabs you in the chest if you try to take a breath or move before it’s done torturing you.
And stress? It pours gasoline on all of it.
Stress is not just a trigger; it’s a loaded gun
When I’m stressed, when life delivers too much grief, too many bills, too many people expecting me to perform wellness like a broken-down show pony, my symptoms flare.
I lose strength. I lose sleep. I lose pieces of myself.
The problem is, the world doesn’t see the flare.
They see me cancel plans. They see me slow down. They see me quiet. And instead of understanding or patience, I get comments.
“Must be nice to lie in bed all day.”
“You don’t look sick.”
“We all get tired, you just have to keep going.”
“Are you sure it’s not all in your head?” >> No fucking shit, Sherlock! Look at my MRI, my head is full of it.
This is not your punchline
I’ve heard the jokes. Seen the memes. Watched people laugh about forgetting their keys and say to me, “Oops, maybe I also have MS!” (Yeah, not funny.)
I’ve watched people roll their eyes when I say I can’t drive today because my left foot won’t lift properly. I’ve had colleagues act like I’m milking it. I’ve had doctors talk over me, then prescribe yoga and mindfulness when what I need is a damn MRI. I’ve had strangers verbally attack me because I parked in a disabled zone.
I’ve seen pity turn into boredom. Sympathy into silence. And let me tell you: nothing hurts like being dismissed when you’re already fighting your own body just to exist.
What I want you to know
I didn’t choose this.
MS took my ability to dance, to sing, to be spontaneous. It took my certainty. It took the version of me that used to trust my own body and enjoyed life. It took the me that loved to be spontaneous, adventurous, playful. But let me tell you, it didn’t take my fight. I will not sit down and be quiet. I will keep going. I will keep fighting. It did not take my voice.
And so I’m using it.
To say:
Please stop downplaying invisible illness.
Please stop measuring someone’s pain against how well they can smile through it or hide the shit show that’s going on inside them.
Please stop expecting people with chronic conditions to perform gratitude like it’s a damn talent show.
Chronic illness is hard enough without having to fight for legitimacy and dignity.
And I’m tired. So fucking tired. Tired of fighting. Tired of barely surviving. Tired of pretending I’m fine when I’m hanging on by a thread. I don’t get to rest. I don’t get to fall apart. I have to take care of myself, every meal, every bill, every damn decision, in a body that betrays me and reacts to everything I do or feel. And no one sees the cost.
I’m still here
I am still here. Still trying. Still waking up in this fucking body I didn’t choose, but have no choice but to live inside. Yes, there is a lot wrong with me, no, I don’t enjoy it, and no, it’s not funny.
Sometimes I cry from the pain. Sometimes I scream from the frustration. Sometimes I laugh, because if I don’t, I’ll unravel completely.
But I am here. Bruised, exhausted, aching, but here.
And if you’re reading this and you have a chronic illness too, I see you. You’re not lazy. You’re not faking. You’re not alone.
You’re carrying a battle inside your body that most people can’t even imagine.
And you’re still here, too.
What about you? Have you ever had to defend your pain? To justify your limits? Tell me. I’m listening.
I’ll be sitting at my laptop, working, writing, answering emails, maybe just thinking about writing while actually scrolling through memes, and then poof… I disappear.
Not slowly, like that cosy afternoon nap you give yourself permission for. I mean one second I’m here, and the next, gone. Like someone unplugged my brain. Then just as quickly, I jolt back. Blink. It’s over. The dog’s still asleep. The kettle’s still humming. But I’m sitting upright at my computer, wondering: Did I just fall asleep while working? And it happens more than once; these strange glitches come in clusters. I can be pulled out of them if the phone rings or if someone touches me, like my nervous system is waiting for a jumpstart.
I’ve had a few of these episodes now. They’re not dreamy or floaty or warm. They’re hard and fast and jarring. And they scare the shit out of me.
When you live with MS, every weird body glitch carries a question mark. Is this just MS doing its daily chaos routine? Or is this something new? I am always scared of something new because in my support group, my fellow spoonies will say, “It’s never just one disease,” or “Once you’ve got one, you’ll get more.”
Please, no.
MRI (Eventually) Incoming
I haven’t actually made the appointment yet. I know I need to. But I’m still in the bureaucratic limbo of:
A. Figuring out whether my medical aid will cover it (spoiler: only a portion, yay South African healthcare).
B. …I forgot what B was. I genuinely had it a minute ago.
Anyway. MRI, neurologist, those are on the horizon. Somewhere between the load shedding schedule and the next cup of tea.
And I’ll admit it: I’m nervous. Not because I expect a terrifying result. I’ve already got a brain with white spots and a spine full of screws and wires. But I need answers. And the options on the table are… not exactly comforting.
Here’s the shortlist:
MS fatigue, aka “lassitude,” which is a fancy word for soul-sucking exhaustion that hits like a tranquillizer dart. It’s not “you need a nap” tired. It’s “my brain is melting” tired. I don’t know how to explain it to people who have never experienced it. Closest is, imagine you’ve been awake for 142 hours and your veins are full of cement.
Microsleeps, which are tiny, sneaky, involuntary naps that last mere seconds but could happen while I’m sitting, reading, or, terrifyingly, driving.
Narcolepsy, which I don’t think it is, but hey, add it to the menu of potential plot twists.
Or, worst case, seizures, though mine don’t come with confusion or post-episode fog, so that seems less likely. Still, it’s on the board.
What’s the difference, anyway?
I did some digging because I’m me, and medical rabbit holes are my weird comfort activity. Here’s the deal:
MS Fatigue: Creeps in slowly, can last days, weeks, months (yup), worsens with heat or thinking or breathing. It’s not fixed with sleep; you just have to wave a white flag and collapse.
Microsleeps: Happen instantly and briefly. You might not even realize it’s happening. They often show up when you’re bored, tired, or doing something repetitive. Like, say… staring at a screen trying to earn a living.
Sleep attacks: Similar to narcolepsy, these come on fast and can make you collapse mid-sentence. (Not happening here, thank god.)
Seizures: Usually longer, often come with confusion or memory gaps. (Not me. I come back online almost too fast.)
So what’s happening with me? I don’t know yet. But I do know this: it’s unsettling. So much so that Bugsy seems to pick up on it and he lies next to me quietly till I’m back before carrying on with his 18th zoomie of the day.
The Mental Load of Not Knowing
This is the part they don’t tell you when you’re diagnosed. Not just the disease, but the never-ending detective work. The constant second-guessing. The mental calculus of “Should I worry about this now or later? Or never?”
It’s exhausting. And honestly? Sometimes it’s lonelier than the actual symptoms.
But I’m trying to do the responsible thing. See the doctor. Get the scan. Ask the questions. Start taking rest breaks (who has time for this?) and hydrate (not so easy when your throat muscles are experiencing spasticity).
Things I need to do:
Rest with intention: Schedule quiet breaks, not just flopping on the couch. Phone off, eyes closed, even if it’s just 10 minutes.
Temperature matters: I keep a fan close by. Heat makes it worse.
Bedtime boundaries: I HAVE to get stricter about bedtime; even though I want to binge British murder shows till 2 a.m., I simply can’t. A good night’s rest is imperative.
Talk to my doctor: Not Google. Not Facebook. Not an Ai medical app. Get actual help.
I’ll update you if/when the MRI happens. I’m claustrophobic and terrified of going in that damn thing. Maybe there’ll be news. Maybe it’ll be “just fatigue.” Maybe I’ll get a fancy new Latin diagnosis to add to my collection. Who knows?
In the meantime, I’m still here. Still working. Still trying. Still curious.
Life lately? Bit of a circus, honestly. The kind where you’re both the juggler and the flaming hoops. I’ve been playing defence (is that the right phrase? I’m South African, so I dunno, insert a rugby version here). Point is, it’s been A Lot™.
Work has slowed down to a crawl. Thank you, AI overlords. Thank you, Canva. Thank you, Wix. Apparently, if you can drag and drop a rectangle onto a screen, you no longer need two decades of actual design experience. I’m thrilled.
And here’s the thing: I’ve hit that midlife shift, the one no one warns you about, where you just stop caring about being impressive or polished or “professional.” I’m tired of being the safe, dependable designer who always colours inside the lines (and yes, I’m still good at it and will obviously continue to do it, but something in me is itching for more). I want to smash some rules. I want to do some design that bites. I want to make something so bold it makes a marketing exec spill their Triple-Foamed Almond-Oat-Cashew-Matcha-Chai-Latte™ or whatever the latest Plant-Based Personality Beverage™ is trending right now. I want to shred the PowerPoint and play the guitar solo that ends with me setting the stage on fire.
Physically, I’m okay if “okay” means cocooned under 6 blankets, trying to weigh up the pros and cons of getting up to pee. The bathroom is approximately the temperature of Neptune. I am seriously contemplating whether a SheWee is a worthwhile winter investment. If anyone wants to sponsor one, I’ll write a full review, just saying.
In other news, Bugsy recently found and swallowed what can only be described as a decomposing pelt from the Upside Down Pet Buffet. I couldn’t stop him, because, well, MS. Now he’s groaning and on kibble lockdown. He’ll do it again. We both know it.
Other recent obsessions include: – Nutritional yeast (I don’t even know who I am anymore, but this stuff is gooooood). – Cinnamon. In everything. I’m basically a sentient chai. – The fantasy of watching trash TV with a giant mug of lactose-free, sugar-free hot choc and zero obligations.
On the “doing things because I have to, not because I want to” list: • Looking for work • Doing work • Starting 7 side hustles because bills • Also, doing dishes (or rather, avoiding them entirely)
My soul? Currently on a hunger strike. All it wants is to make weird, beautiful things: paint, write, doodle, sing to plants, get lost in a good audiobook (if I could actually find one narrated by someone who doesn’t sound like a robot or a smug yoga teacher).
Also, if my body could leave me a Post-it note, it would say: “I’m in spasm. I’m twitching like a haunted doll. Please sort this out.”
A few other thoughts, while we’re here: I’ve irrationally decided that my long, tangled hair is now my entire identity and also the enemy and needs the chop.
My autobiography title this week is How I Turned Into a Pot Plant and Suffered My Own Neglect.
Speaking of plants, I watered two of them recently, and they’re thriving. Who knew that water helps? Revolutionary.
That’s where I’m at. Tired. Unapologetically salty. Creatively starved. But weirdly hopeful that something good will take root if I just keep showing up. Maybe a little scrappy. Maybe not polished. But real.
Let’s see what grows.
— Kate
Bugsy says he won’t eat anything dead and unidentifiable this week… if you buy us a coffee: buymeacoffee.com/kateandginger
This weeks’s productivity level: 2/10 , but my plants are alive, so.
Mood-Support Beverage™ of the Week:Existential Crampuccino™, spicy, bitter, best served in bed.
Unsolicited Product Endorsement:This entry is not sponsored by SheWee™, but it should be.
Bugsy’s Digestive Adventures™: This week’s highlight: decomposing pelt from the Upside Down™ Pet Buffet.
Bugsy says he won’t eat anything dead and unidentifiable next week… if you buy us a coffee: buymeacoffee.com/kateandginger
On chilly mornings, warm beds, and the slow joy of being with someone you’ve missed.
There’s a particular kind of comfort that comes with waking up in the middle of the night and feeling your partner asleep next to you. When it’s cold out, and they’re warm, and for just a moment everything feels safe and still. Bugsy snuggled in his bed, the hush of autumn just beyond the window, and his hand finding mine under the covers. It’s not dramatic, but it is everything.
Last night we went to visit friends for a drink. We sat around, the four of us, listening to Joe Cocker’s Woodstock performance of With a Little Help From My Friends, drinking wine, and laughing until our bellies ached. It was the kind of night that fills your cup in ways you didn’t know it was empty.
When we got home, Bugsy was over the moon to see us. We stayed up until after 2 am, just talking and laughing, savouring the feeling of being together again. I was supposed to be back here a week ago, but broken-down cars and a relentless list of responsibilities kept pushing the date out. Life happened, as it does. But man, was it good to come back.
We call this my home too now, because home is where the heart is. And he has my heart.
This weekend, we’re letting ourselves unwind. We have plans to visit a local bazaar; right now, we’re cooking meals, watching movies, and diving into a feast of sports, rugby, Roland Garros tennis, and Formula 1. It’s the kind of cosy weekend routine that makes space for recovery. Bugsy is fast asleep next to the French doors, curled up in his bed, the green garden just beyond.
Outside, it’s chilly, grey, and beautifully quiet. Inside, it’s all warmth and rest. It feels like a much-needed pause, a gentle return to ourselves. A little slice of emotional burnout recovery in real time.
I learned the hard way that working 18-hour days, six days a week, will break you in more ways than just physically. Burnout isn’t a badge of honour. Downtime isn’t optional. It’s vital for your well-being and your soul.
So if you’re reading this and running on empty, I hope you give yourself the gift of slowing down. Let yourself rest. Let yourself be held. Let yourself remember what it feels like to come home, to your body, to your breath, and to the people who love you. This season, let reconnection be your ritual.
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.
Editor’s Note This one’s for the tired ones. The ones still standing, barely, because they had to be. I wrote it for the part of me that still thinks asking for help is weakness, even when I know better. It’s not polished. It’s not pretty. But it’s real. For anyone who’s ever had to fight to find their people, this is for you.
These Weary Bones
oh these weary bones that rattle like a snake deceived by a mind that won’t shut up the motormouth spinning stories, dizzying the insides of my head.
I rose from nothing, like a loaf left too long in the oven punched, kneaded, left to burn.
I’m no damn island. more a battered village clinging to a cliffside. fingernails split. hands bloodied. still, holding on.
a stubborn mule clutching pride even as hands reach out. I know I’m not alone.
this world all rage and righteous rot. keep your petty poppycock step the fuck aside if all you bring is cruelty and showmanship.
no space left on this rock for exploding egos and fair-weather saints. I’ve bled too much to share ground with cowards.
The Comfort of a Clan
I’m tired. Not the “I stayed up too late” kind of tired. No, I’m talking about the kind of tired that lives in your bones. The kind that whispers, “you’re doing too much again,” even while you keep pushing. My MS flares love to remind me what happens when I don’t listen.
Still, I keep going. And honestly? I’m not even sure how.
But here’s one truth I know: I am incredibly lucky. I’ve got a clan. A real one. A village. A tribe. A group of humans who love me hard, hold me up, and never ask for anything in return but the truth. I think of the people who don’t have that, who face the grind alone, and my heart breaks a little.
Yes, I feel sorry for myself sometimes. I think that’s normal, especially when your body betrays you. But even then, I remind myself, I am one of the lucky ones. I don’t have to do this alone.
Well, except I often try to.
Because, truth be told, I am a stubborn old bag. Asking for help doesn’t come naturally to me. I’ve been fiercely independent for over 16 years. Before that? I was stuck in a situation where I had no choice but to rely on someone who resented every second of it. It nearly broke me. But I got out. With the help of my family and years of therapy, I found myself again.
So no, I don’t like asking for help. It reminds me of what it used to cost me. But these days, my body doesn’t give me the luxury of pride. And I’m learning, slowly, to trust that help doesn’t always come with strings.
For the first time, I’m in a relationship that feels like home. Not perfect. Not a rom-com. But real. Equal. Honest. Communication is the currency, not control. We walk beside each other, no one dragging the other along. It took me long enough to find this. But god, it was worth the wait.
Here’s something else I’ve learned: Surrounding yourself with the right people? It’s everything.
I’ve trimmed my circle right down in recent years. No room for the energy vampires, the performative friends, the ones who disappear when things get hard. I don’t need a crowd. I need a few solid souls who remind me who I am when I forget. Who challenge me, support me, and never let me shrink.
You don’t have to agree on everything, politics, religion, parenting styles, or pineapple on pizza. What matters is respect. Empathy. The ability to sit across from someone and say, “I don’t get it, but I’m here.”
Imagine a world where that was the norm instead of the exception. Imagine a culture built not on outrage and ego, but on kindness and curiosity.
Yeah, I know. Sounds like a pipe dream. But honestly? I think it starts with us. With our little villages. By refusing to let the world make us bitter. Choosing over and over to love louder than the noise.
It still takes a village. Maybe now more than ever.
And I’m holding onto mine with everything I’ve got.
