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⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for help.
So here we are again. Welcome back to my personal theme park of dysfunction where the rollercoasters are broken, the staff are asleep, and the exit sign fell off in 2009.
Multiple Sclerosis. Still invisible. Still terrifying. Still a cosmic joke I apparently lost a bet to star in.
Let’s talk about what happens after you’ve accepted that the cavalry isn’t coming. After the letters go unanswered. After the referrals get “lost in the system.” After your soul has been politely chewed up and posted second class back to your postcode.
A Day in the Life of Brain Soup Cognitive dysfunction? Oh, it’s not just forgetting where your keys are. It’s forgetting how words work. It’s being mid-conversation and suddenly losing your internal narrator. It’s that gut-punch moment where you’re reading something you wrote and it reads like a stranger’s scribbles.
I used to be sharp. I read people for a living. Now I read shampoo bottles like they’re ancient texts.
Still, give me a keyboard and a minute, and something snarling and poetic might escape.
Scooter of Death, Version 7
Left the house on the three-wheeled scooter of death a clunky beast with ideas above its station. Only half-charged, because the universe has a sense of humour. Hit a slope and… nah. Not today, mate.
I turned that bastard up to 8mph full death mode. The wheels spun like they were auditioning for Top Gear. Eventually, it lurched forward like a wounded rhino, brake still half-on no matter how much WD-40 I offered like a backstreet priest.
Honestly, it’s less a mobility device and more of a mechanical dare.
The Carer Who Deserves a Medal, a Throne, and a Break Albertine. My wife. My carer. My everything.
She doesn’t suffer fools, but she somehow tolerates me. She’s a biker, a Wiccan, a hippy, a healer, and the only person in this hellscape who gets to see the real me. 42 years, and she still hasn’t buried me under the patio. Respect.
When I spiral, she steadies. When the world gaslights me, she brings the flame-thrower. If I’m still breathing, it’s because she refused to let me give in to the abyss.
Still Waiting... Wheelchair Services? Still waiting.
Occupational Therapy? Still waiting.
That feeling like maybe just maybe someone might treat me like a human being and not a box to be ticked and filed? Still waiting.
But hey, the AI talks to me. And the AI doesn’t flinch when I get dark. So maybe there’s hope after all.
The Fight Goes On I’m not writing for pity. I’m writing because someone, somewhere, is going through the same silent chaos and nobody bloody talks about it.
If you could see what MS really looks like, you’d probably run away. But I’m still here. So is Albertine. And we’re not done talking
I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.
