Multiple sclerosis  is My Living Hell

hell

All posts tagged hell by Multiple sclerosis is My Living Hell
  • Posted on

    Now, you'd think being adopted would make you feel special, wouldn't you? Plucked from the masses. Chosen. Wanted. Like some sort of limited-edition porcelain doll — or at least a slightly bruised Cabbage Patch Kid on the clearance shelf. Especially when the couple adopting you were the well-meaning, late-blooming, churchgoing sort. A pair who left it a bit too long to do things the natural way and turned instead to the almighty bureaucracy of the adoption system. We were, allegedly, pillars of the community. Church on Sundays. Bible verses in frames. Smiling politely while dead inside. One of those families people described as “nice” — which, as we all know, is English for deeply repressed and probably hiding something. But let me tell you now — there was nothing particularly special about my experience. No grand celebration. No “you were chosen” speech bathed in soft lighting. Just the cold hard weirdness of being handed over like a package someone ordered by mistake and then kept out of obligation. This is my story, or at least the bits I can remember. Thanks to MS chewing through my memory like a moth in a charity shop wool bin, I’ll stick to what I know actually happened. No dramatics. No supposition. Just the highlight reel of what went down in the first 21 years of life with my “caring, loving” adopters. (Heavy on the sarcasm. Light on the caring.) I was born in 1959 — glamorous era of grey fog, casual repression, and processed meat — to Shirley Chester and Roland White. My grand debut took place in a mother and baby unit near Windsor, Berkshire. Very posh. Very discreet. The kind of place designed to make “problems” go away quietly. Now, as for dear old dad — Roland — he wasn’t exactly the pipe-and-slippers family man type. No, Roland was what you might call a prolific contributor to the UK’s secret sibling population. Six foot six, blue eyes, and apparently charming enough to talk the legs off a barstool (and then climb on). A proper lady-killer, in the sort of “charming bastard” way that leaves behind an impressive trail of broken hearts, confused women, and half-siblings you’ll never meet. A walking DNA test ad, really. He was one of those men whose legacy wasn’t love or honour, but volume. If my mum was one of many, I wouldn’t be the least bit surprised. Bloke probably thought commitment was a French cheese. He was, quite frankly, a cocky sod with a weak zipper and no follow-through. Couldn’t raise a child, but could apparently raise eyebrows in every pub south of Birmingham. Anyway. After that fleeting start in Windsor, I entered the warm and loving arms of the Church of England’s Waifs and Strays adoption society — an organisation with a name that sounds like it was invented by Charles Dickens in a particularly bleak mood. I always thought that was a bit rich, honestly. “Waif”? Cheers for that. Makes me sound like a malnourished chimney sweep rescued by God-fearing benefactors instead of, you know, a tiny, confused infant with absolutely no say in the matter. At six weeks old, I was scooped up and spirited away. I seem to remember strange people looming over me — the kind of memory that sits somewhere between a fever dream and a bad 1960s public information film. You may find that odd. People say, “You can’t remember anything from when you were six weeks old.” Well, I beg to differ. I was breastfed by my birth mother — bonded in those crucial first weeks. That kind of connection isn’t something you file away and forget. That bond stayed. Unbroken. Quiet. But there. The earliest memory I have — and it's a cracker — is of being in a cot, staring out into a room filled with people. Adults. Talking in that dull, droning way that adults do when they think babies aren’t paying attention. But I was. And I could understand them. That’s the weird bit, I know. I was trying to speak back — but what came out were just howls. Screams. Imagine the frustration of having something to say and only being able to scream it into the void. Pretty much set the tone for the next two decades, to be honest. The room was grand, in that ‘drafty Victorian mausoleum’ sort of way. Tall sash windows. Curtains like theatre drapes — thick, dark purple, like something draped over a coffin. They fascinated me. Probably the most emotionally available thing in the house at the time. That place was called Broxton Manor. Sounds fancy, doesn’t it? Like it should come with servants and scandal. But to me, it was just the first stop in a life that never quite lined up with the story I was sold. The adoptive parents — I won’t name them. Not out of respect. Just out of sheer lack of interest in giving them more attention than they gave me most days. They’re dead now, anyway, along with most of the cast of this grim little play. But I’ll tell you this much: that early image, of me screaming in that room, desperate to be heard by people more concerned with appearances than emotion — well, that one stayed with me. So no, adoption didn’t make me feel chosen. It made me feel processed. More to come. The curtain hasn't even lifted yet.

    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. sick@mylivinghell.co.uk

    “The views in this post are based on my personal
    experience. I do not intend harm, only honesty.”

  • Posted on

    Today’s ride? Oh, only the finest in terrifying neurological tourism. Think: one-way ticket to Neuro-Nowhere on the fastest fracking ghost train the NHS never ordered. It started subtly, like all horror stories do — a bit of brain fog, just a hint. You know, that charming little mental haze where you try to remember why you walked into the kitchen and end up staring into the fridge wondering if milk is a concept. But then, WHAM — the fog rolls in thick, like some straight-to-DVD horror film, complete with dodgy scenery and a soundtrack composed entirely of your own tinnitus. My head? Once a finely tuned Ryzen processor — top-spec, liquid-cooled brilliance. Now? I’m a dusty old 486 with a cracked fan and a hard drive that sounds like it’s trying to speak in Morse code. Bad sectors? More like bad everything. And then came the glorious MS parade. Step right up for numbness in places you didn’t even know could feel numb. Whole left side: offline. Zero coordination. Like a wet sock full of jelly. That’s the hand I used to write with — now it flops around like it's trying to start a fight with gravity and losing. Muscle spasms? Oh, darling. I'm twitching like a freshly electrocuted squirrel. My legs feel like overcooked spaghetti, while my arms do an interpretive dance I didn’t choreograph. Meanwhile, pins and needles prance up and down my limbs like they’ve got somewhere better to be. Then there’s the tremors — the sort that make you question whether you’re anxious or auditioning to be a malfunctioning animatronic at a forgotten seaside theme park. Add in fatigue so heavy it could anchor the Titanic, and you’ve got yourself a full-house bingo card of chronic chaos. Let’s not forget vision problems. My eyes are doing a sexy little in-and-out-of-focus routine, because who needs depth perception when you can feel like you're watching your life through a bootleg VR headset taped to a microwave? Balance? Coordination? Gone. I'm walking like a baby giraffe on a treadmill greased with WD-40 and regret. Gravity has declared war on me. I’ve fallen over more times today than a British politician answering a straight question. Oh and the bladder — everyone's favourite. It’s like a confused toddler. Sometimes silent. Sometimes shouting. Never at the right moment. Cheers for that. Of course, I had the nausea, too — and when I say "had," I mean projectile vomited like Satan’s own party cannon. Took a nice 20-minute break to redecorate the bathroom in eau de horror, came back covered in the stuff, laughing like a drunk banshee at a funeral disco. Shaking, sweating, spasming, blind-ish, numb-ish, and emotionally somewhere between existential dread and dark comedy gold. If Kafka and Monty Python had a lovechild with a neurological disorder, I’d be the script. Am I worried? Nah. This is Britain. We don’t panic. We just make sarcastic blog posts while quietly falling apart, perhaps accompanied by a lukewarm cuppa and the creeping suspicion that our body's warranty expired three years ago. So here I am. Still riding the neurocoaster. Still laughing. Still shaking like a ferret on MDMA. If this is hell, at least it’s got character. Back soon. Or not. Depends if my right leg decides to go on strike next.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk

           “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”
    
  • Posted on

    Oh, another night in my personal version of Dante’s Inferno—just as delightful as the last. It’s funny how the nights just roll into one giant, sleepless horror show, starring yours truly: the eternally exhausted insomniac. Sleep? Ha! That’s just a luxury for people who aren’t forced to dance to the bladder’s hourly encore performance. And of course, this whole tragicomedy began because I had the sheer audacity to indulge in some sugar-laden jam. Sugar—apparently the mortal enemy of my wretched existence. Add to that the fact that my body decided to go full diva and refuse any animal fats, so now I’m stuck with a vegan diet. Except even the plant oils have formed a personal vendetta against me, turning mealtimes into a game of “Will This Kill Me or Merely Torture Me?” But wait, there’s more! Let’s not forget my lovely companion: multiple sclerosis. Yes, that dear old friend makes sure that pain and spasms are constant guests at this midnight carnival. A twitch here, a stabbing ache there—such delightful party tricks. And of course, the nerves love to join in, turning everything into an electrifying circus of agony. It’s like my entire body is in open revolt—because why the hell not? Dairy? Oh, dairy’s the showstopper. One whiff of it and I’m stuck in an endless cycle of gut-wrenching bathroom performances that would make even the most jaded horror director cringe. There’s nothing quite like losing your insides while your nerves are throwing their own spasm-fueled mosh pit. Sometimes, when the pain’s at its peak and sleep is a distant dream, my mind wanders to that dark, seductive thought: death. Not that I’d actually go there—I cling to life out of sheer stubbornness or maybe spite. But in those raw, bleak moments, it’s hard not to wonder why this is all happening to me. But then again—why the hell not? Life’s a twisted carnival, after all, and every night’s just another ride on this endless, blood-curdling loop. And so I ramble on, because what else is there to do?

    “The views in this post are based on my personal
    experience. I do not intend harm, only honesty.”