Six months. That’s how long this MS relapse has been creeping in like an unwanted houseguest that refuses to leave. At first, it was small things, my brain cutting the signal to my legs for a split second, just long enough for me to collapse in public like a puppet with cut strings. One day, my skull nearly met a brick step. My vision blurred, brain fog thickened, pain wrapped itself around me like barbed wire, and fatigue pinned me down harder and harder. My hands stiffened until even the simplest tasks became impossible.
Eventually, I couldn’t get out of bed.
That’s when despair started to set in.
I lay there watching other people live their lives through Facebook, friends travelling, working, raising families. Meanwhile, I wasn’t living anymore. I was just an observer. The depression sank deep: I window shopped for a wheelchair, I made plans for Bugsy’s future in case I gave up, I worried about the clutter I’d leave behind, and who would have to sort through my life’s mess. I began handing out my things in my head, like a ghost-in-waiting.
It felt like the end of me.
Joy vs. Happiness
Somewhere in that heaviness, I realised something important: happiness and joy are not the same thing.
Happiness is the big picture. It’s a state of being, often tied to how your life is going overall: your health, relationships, work, and finances. When those collapse, happiness often does too.
Joy is smaller, wilder, and more resilient. It doesn’t wait for life to be perfect. It slips in uninvited, a spark of light in the middle of the dark. Joy is the squirrel running across the garden wall, the sound of a bird you can’t quite name, the way coffee smells first thing in the morning.
Happiness may feel far away, but joy can still sneak into the cracks. And sometimes a single spark of joy is enough to keep you going.
But then… Spring came.
The colours outside shifted. Bees returned to flowers. Squirrels ran mad little races. I saw a gecko on the wall and found myself wondering about its tiny life, the improbable miracle of it even existing. I noticed clouds again, leaves tumbling in the wind. And it hit me: these small flashes of beauty weren’t just distractions, they were lifelines.
I’d always loved “stopping to smell the roses,” but now it became survival. A friend suggested embroidery, since crochet was no longer possible for my hands. I tried, and to my surprise, I could manage it. I started stitching bright, clumsy shapes onto my clothes. My bag of rainbow embroidery floss became a treasure chest; all those colours sparked something physical inside me, like they were rewiring my brain in the best way.
I realised I wasn’t just noticing joy anymore, I was creating it.
There was a TED Talk I stumbled across that spoke about the science of joy, how colour, shape, and playfulness trigger a response in us. And I thought: This is it. This is what’s keeping me alive. Every time I added colour, playfulness, whimsy around me, on my jeans, on my walls, in little objects scattered around my bed, it pulled me back from despair.
Why joy matters when everything feels impossible
Psychologists call these “micro-moments of joy.” Research shows that even the smallest burst, a pop of colour, a laugh, a birdsong, can reduce stress hormones, boost dopamine, and give our brains a break from the relentless loop of pain and fear. They don’t fix everything, but they tilt the scale enough to matter.
When you’re in survival mode, that tilt is everything.
Joy doesn’t have to be fireworks. Sometimes it’s embroidery thread. Sometimes it’s a squirrel. Sometimes it’s just coffee in your favourite mug, warm against your hands, proof that life still has something gentle to offer.
Your turn:
Think about one tiny thing that gave you joy this week. Not happiness, not pleasure… joy.
Maybe it was a flash of colour.
Maybe it was a sound.
Maybe it was an object that made you smile.
Write it down. Notice how it feels in your body when you recall it. That’s your lifeline. Keep it close.
No matter how difficult or dark life gets, if we want to survive, if we want to stand even the smallest chance, we have got to find joy. You can either sink or swim, and joy is the kick that keeps your head above water.
For me, joy is Bugsy. It’s a gecko. It’s a bag of bright embroidery floss. It’s the stubborn belief that even here, even now, while my body is under attack, life is still offering me something worth holding onto.
Recent moments of joy
EmbroideryFeeling Bugsy close to meBright colours in my saladBurst of colours in the flowersGoing feral on my jeansA coffee given to me while in hospital
Appointment booked. MRI + specialist. My brain immediately leapt to Shakespearean levels of doom. Not “maybe tweak meds,” but this is the end.
Wildlife didn’t help. Snake on the road? Fine, gave him a neighbourly nod, as did Bugsy. Rain spider in my cottage? Full-blown Armageddon. Hyperventilating, sobbing, legs like overcooked pasta. Bugsy lost his mind, barked, growled, and did not like the intruder. I can pick up roaches with my hands, but a rain spider? Absolutely not.
Joined a “Sip ’n Sew” group and tried embroidery. My stitches looked like I did them mid-earthquake while drunk, but here’s the thing: I don’t care, I love it. It gives my eyes a rest from the screen, and it’s a million times easier on my hands than crochet (another thing I’ve had to give up). It’s messy, but who cares? It’s for fun, for sanity. Sadly for my loved ones, this does mean their future birthday and Christmas gifts will likely all be embroidered horrors.
Stats then:
Coffee: lots
Spasms: more
Falls: 1
Diet: soft foods only
Part Two: life piling on
4 September
Then came The CarSituation. I can no longer use a clutch; my leg can’t push it in, so I had to make the difficult decision to sell it and move over to an automatic. Buyer found the day before the scan. Cue frantic running around on the faint whisper of a spoon, with my family doing Olympic-level backup. Cleaning, paperwork, and roadworthy test.
While waiting at the Roadworthy place, phone pings: sedation for MRI wasn’t booked. Sedation, which I need because claustrophobia. Called, begged, bargained. Too late. Scan postponed. Again.
On paper, it’s “a little hiccup.” In my body? Every nerve ending burst into flames. Shaking, weak legs, dropping everything. I couldn’t stand. My family had to swoop in, finish the car admin, and carry me home. My nervous system just flatlined. Two days later, I’m still bent crooked, walking like a puppet with cut strings. I have never felt this weak. It’s a horrible feeling.
Current scorecard:
Coffee: 3
Spasms: 2
Falls: narrowly avoided, thanks to family rescue squad
Bugsy, of course, remains unbothered. Happy passenger, ears flapping in the breeze, no clue about MRIs or roadworthy tests. Just pure dog joy. Honestly? I think he’s onto something.
I’m crawling out of a flare that felt like it would never end. The kind where your body throws new symptoms at you like darts, and you’re the target taped to the wall. Physically, mentally, emotionally…I’m wrung out. I keep fantasising about pressing pause on life so I can just rest, heal, maybe breathe…but the world doesn’t work that way. The bills don’t stop, the dog doesn’t stop, the body doesn’t stop misbehaving.
So I’ve doubled down on clean living. No preservatives, no processed crap, no “sugar-free” imposters, no flavouring unless I pick the damn leaf myself. Butter? Gone. Even my sugar-free, salt free, preservative free peanut butter got the boot. It’s brutal. But listen, if anyone thinks they’re prying my single-shot cappuccino out of my hands, they’d better come armed. I will bite. And not in a sexy Twilight way.
And then, there’s my boobs. Out of nowhere…enormous. Like, biblical-plague-level enormous. What the actual fuck? I know I’m in peri, been there a while, but does this mean I’ve moved up a level? I feel like a teenager in puberty but without the energy and way too much sass. Add “see gynaecologist” to the ever-growing medical to-do list, which is already topped with an MRI and a specialist visit that my pricey medical aid won’t cover. Health feels like a full-time job these days, except it’s the kind where the boss hates you and the pay is zero.
At least Bugsy knows. He’s been equal parts terrorist and angel…destroying toys, digging craters in the yard, chewing shoes…but the minute he senses tears, he’s there. He licked my face clean the other night when I was falling apart, and on Sunday, when my Mum had a little cry, he climbed onto her lap and did the same for her. The dog has better bedside manners than half the doctors I’ve seen over the last 20 years.
Then I made the mistake of looking through old photos. Me, thin, fit, glowing. Skinny AF. Sure, I was sick then too…scared of eating or drinking anything because I didn’t know if I could get rid of it again…but wow, those legs, that jawline, that flat little tummy and those teeny tiny perfect boobs. Now I see myself and it’s… different. Softer. Rounder. A little padded, a little tired, a bit wobbly. I do all the “right” things, but my body shrugs and does what it wants. It’s frustrating, yes, but also a little funny, like my metabolism decided to take early retirement without telling me, “Fuck you bitch, I’m outta here!”. Probably sipping cocktails in Mauritius without me. And those boobs. Did I mention the boobs?
Some days it feels like grief, losing versions of myself over and over again. Other days I can laugh about it. Today, I’m somewhere in between…sipping my cappuccino like it’s the Holy Grail (which it is), glaring at the mirror, and cuddling the dog who refuses to leave my side or stop chewing my leather boots.
Daily stats: Coffee: 1 (so far) Boobs: 2 (but enormous, deserve their own postcode) Tears: 3 Items destroyed: 2 (RIP boot straps and foxy, the so called indestructible toy) Garden holes: 5 (large enough to bury medical aid paperwork) Medical aid tantrums: infinite Hope: stubbornly hanging on
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
