Joy as Survival

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

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.

Bugsy’s Guide to a Better Life

Bugsy’s Guide to a Better Life

Listen up, humans. It’s me, Bugsy. You’re overcomplicating things again. You’ve got spreadsheets, bank balances, heartbreaks, and all I’ve got is a wagging tail and a face that apparently makes strangers say “who’s a good boy?” at least five times a walk. Spoiler: it’s me.

If you’re tired, sad, or ugly-crying with swollen eyes (I won’t name names, Kate), here are my rules for a better life:

Rule 1: Nap whenever the mood strikes.

Couch, bed, sunspot on the floor, pile of dirty laundry, it doesn’t matter. Humans keep pushing through exhaustion like it’s a badge of honour. You’re cranky, drooling, and nobody likes you like that. Just nap.

Rule 2: Sniff first, ask later.

Curiosity isn’t dangerous, it’s delicious. That tree? Important memo from the neighbourhood dogs. That stranger’s bag? Potential snack stash. Stop worrying if you should, just sniff.

Rule 3: Lead with joy (wag before words).

Imagine if every time you saw someone you liked, your whole butt wiggled? That’s how I live. Drop the poker face. Wag at your people.

Rule 4: Treats are not guilty pleasures.

Humans keep whispering about carbs and calories like they’re state secrets. Newsflash: food is joy. Eat the chicken. Steal the sausage. Life is short.

Rule 5: Chase the ball, even if you never catch it.

Do the thing that makes your heart race, even if it’s ridiculous. Run after it anyway. The fun is in the chase.

Rule 6: Loyalty is everything.

If you’ve got someone who rubs your ears and fills your bowl, stick close. Don’t wander off for shinier toys. Stay with your pack.

Rule 7: Shake it off. Literally.

Got wet in the rain? Covered in mud? Bad day? Shake. It. Off. Then go roll in the grass.

That’s it, humans. Stop being weird about life. Sleep, sniff, wag, eat, chase, love, shake. Repeat.

Now, who’s got the biscuits?

~ Bugsy 🐾

Journal Entry – August 26

Journal Entry – August 26

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