Let’s talk about the big, festering elephant in the room: Multiple Sclerosis.
Or, as I prefer to call it, the silent puppeteer of mental mayhem. For anyone not familiar — congratulations, enjoy your blissful ignorance. For those of us who are intimately acquainted, we know it doesn’t just nibble at your nervous system like a shy woodland creature. No — MS kicks down the door, flips your brain inside out, and installs a disco ball of chaos where your personality used to be.
I used to be fairly calm. Normal, even. Then MS came along like an uninvited houseguest who never leaves — and suddenly I’m starring in my own Jekyll and Hyde horror flick. No polite build-up. Just creeping dread followed by a full-throttle freak-out. I’m talking foaming at the mouth, incoherent screaming, full-blown berserker mode. Try hiding that from your partner. Try pretending it’s just “a bad day.”
It’s like watching yourself unravel while screaming internally, “WHAT THE HELL IS HAPPENING?!” And the more you try to stop it, the worse it gets. Panic mode? Engaged. Solutions? None. At some point, I ended up on the floor semi-conscious after headbutting a wall, hoping it would jolt my brain back to factory settings.
So now I live by one simple rule: avoid stress like it’s a plague-carrying rat. Because stress isn’t just bad for MS — it’s the bloody ignition key to the meltdown machine. Let’s not forget the heart attack. That little bonus prize from the MS gift basket. 60% heart function now, apparently. What a treat.
Oh, and my voice? Occasionally checks out completely. Just ups and leaves. One minute I’m fine, next minute I’m miming like a drunk Marcel Marceau. People don’t get it. They assume you’re just ignoring them, or being lazy. I once sent my mother a long, heartfelt email explaining it all. Her response? Silence. Well, no — before the silence she asked my partner if I “really” had MS. That was the final curtain on that relationship.
She died a year ago. I wasn’t invited to the funeral. Not told, not asked. Just gone. Eleven years of silence because everyone was “too busy with their lives,” and I was, frankly, the cuckoo in the nest. Never fit in with my birth mother’s life, nor my adopted mother’s. Just the family subplot no one talks about.
That said, meeting my half-siblings was a strange and wonderful thing. I’m sure they found it weird too. “Surprise, here’s your brother you never knew about, also adopted, and he comes with emotional baggage and inappropriate sarcasm.” Meeting my birth mother was like attending a surreal theatre performance. At the time, she was dating a bloke younger than me. Classy.
She lied about my father. Even got her sister involved. One day, she phoned me crying, saying my dad had died in a motorbike crash. I didn’t buy it. I could feel he was still alive — don’t ask me how. I just knew. I sat with Albertine and we asked the Universe for help (as you do when reality fails you), and lo and behold — we found him. In New Zealand, of all places. And guess what? I had a full sister, also adopted.
Turns out all the lies, secrets and cover-ups were just damage control for decisions made in the 1950s — that golden era of social shame, polished smiles, and secrets buried under six feet of denial.
looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk
“The views in this post are based on my personal
experience. I do not intend harm, only honesty.”
