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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 professional help.
Sunday again. My head feels like it’s trying to blow itself off my neck. The conservatory is a sauna from hell, pushing close to 100 degrees. I’m basically rotisserie-roasting in my wheelchair, waiting for the fridge and freezer to finally explode in sympathy. Their groaning is the soundtrack of my life.
A rare visitor stopped by this weekend. Strange thing, visitors — they get fewer as the years pile up, and before you know it, you’re “that forgotten bloke.” Of course, part of it’s my fault. I didn’t want people seeing me like this — a creaking neck that sounds like snapping twigs, heart palpitations strong enough to rattle furniture, eyes streaming like cheap taps, throat raw enough to sand wood. The whole freakshow. Welcome to the Sunday matinee.
And then there’s the heat. Heat and MS are the perfect lovers — clingy, suffocating, and guaranteed to leave you wrecked. When the temperature climbs, the nervous system basically goes on strike. Muscles weaken, balance evaporates, and my brain decides it’s time to reboot itself every ten minutes. Hello brain fog, goodbye memory. The world feels twice as heavy and I move half as fast. Some people call it “Uhthoff’s phenomenon.” I call it being boiled alive in your own juices.
Hydration, of course, is supposed to be the saviour. Drink more water, they say. Right. Easy advice when you don’t have bladder problems that make you live like a hostage negotiating toilet breaks. Water in, waterfall out. Still — dehydration just makes everything worse. Thick blood, pounding head, and an MS body that’s already halfway to meltdown. So I chug when I can, and pay the price when I can’t make it in time. Life’s full of trade-offs.
So what’s left? Medical Mary Jane and Gregorian chants. Sounds ridiculous, but it’s the closest thing I’ve got to therapy. Weed dulls the edges, chant quiets the chaos, and words on this page act as pressure release — raw, unfiltered, sarcastic truth. I know most people don’t want to hear about diarrhoea, pissing yourself, or falling apart in the heat. But some will. Maybe 10, maybe 20 people. And those are the people who get it. That’s who I write for.
Because at the end of the day, there’s no neat bow to tie on this. MS is ugly, sweaty, isolating, and full of brain-melting days where the stress sits on your chest like a fat cat. And yeah, I feel forgotten sometimes. Weird. Different. Alone. But if writing this makes one other person feel less alone in their own meltdown, then maybe it’s worth frying in this bloody hotbox.
I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.
