Joy as Survival
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
Thursday, 4 September 2025
Part 1: Panic Mode
31 August
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 Car Situation. 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
- Embroidery: gloriously messy, unapologetically mine
- Scan: postponed (rage emoji)
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 sick. And I’m Tired of Pretending It’s Okay.
My legs gave out again yesterday.
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.
Healthwashed: When “Wellness” Drinks Aren’t What They Seem
I recently got suckered by a local sparkling drink that looked like it belonged in a wellness influencer’s fridge. You know the type, soft colours, botanical flavour, “low sugar,” “no colourants,” “crafted.” It practically whispered, “I’m healthy, babe.”
And I believed it.
Especially because it featured one of my all-time favourite flavours: elderflower. I didn’t question it. I sipped it like it was liquid virtue.
Then I read the label.
Twelve grams of sugar.
Three teaspoons in one small can.
For someone managing chronic illness, inflammation, and fatigue, that’s a problem.
What happened?
I got healthwashed, misled by clever packaging that makes something seem healthy when it’s not.
These drinks use phrases like:
- Botanical
- Low Sugar
- Guilt-Free
- Plant-Powered
- Inspired by Nature
But they’re often hiding more sugar than you’d expect, or loaded with fruit concentrates and additives that don’t belong anywhere near a “clean” label.
Here’s what to watch out for:
“Low sugar” still adds up.
In South Africa, it can mean up to 5g per 100ml, so a 300ml drink can still sneak in 12g of sugar.
“Botanical” is branding, not nutrition.
It’s marketing fluff. It doesn’t mean the drink is good for you.
Always read the back of the label.
Ignore the pretty front. Flip it. Check the sugar per serving and the ingredients list.
Sneaky red flags:
- Serving size is 100ml, but the can is 300ml
- “Fruit juice concentrate” or “cane sugar” listed early
- Claims like “natural” or “artisan” with no real context
My takeaway?
Even products that look healthy can mess with your health, especially if you’re sensitive to sugar, trying to reduce inflammation, managing symptoms, or lose weight.
This isn’t about guilt.
It’s about knowing what’s in your food so you can make choices that support your body.
Because sugar has a sneaky little habit of dressing up in wellness drag.
Ever been healthwashed?
Tell me your sneakiest “thought it was healthy” product below