Multiple sclerosis  is My Living Hell

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  • Posted on
    • “How to Irritate Your Consultant in Five Easy Steps”—a handy, satirical survival guide for the chronically ill rebel who refuses to behave like a docile NHS statistic: How to Irritate Your Consultant in Five Easy Steps Because illness is hard enough without surrendering your personality too.

    Step 1: Arrive Informed—A.K.A. Their Worst Nightmare Before your appointment, read everything. Medical journals, dodgy Reddit forums, patient blogs, the back of your medication box—anything. Then casually drop phrases like “emerging evidence suggests” or “have you seen the latest NICE guidelines update?” Watch the colour drain from their face as they realise you might know what you’re talking about. Bonus points: Quote a study they haven’t read. Wait for the squirm.

    Step 2: Refuse to Speak in Bullet Points They love a clean symptom list: “Fatigue. Numbness. Blah blah blah.” Instead, give them the full poetic experience: “It’s like my limbs are made of lukewarm jelly and my brain’s running Windows 95.” They’ll try to summarise it with “patient reports fatigue.” Interrupt with: “No, it’s existential fatigue. There’s a difference.”

    Step 3: Make Jokes Oh, they hate this. You’re supposed to be weeping softly, not cracking one-liners. Try these: “So when do I evolve into my final Pokémon form: WobbleSaurus Rex?” “If I fall again, I’ll need a loyalty card for A&E.” “Does this come with a prize for ‘Least Functional Nervous System’?” They’ll either laugh nervously or refer you to psych. Either way, you win.

    Step 4: Express Unfiltered Opinions Don't be afraid to question The System™. Say things like: “Do you actually read my notes or is that just for show?” “Gosh, it's wild how I had to chase eight departments for a scan I didn’t want in the first place.” “Do any of you talk to each other, or is this NHS-wide charades?” You’ll see them twitch, possibly make a note that says “difficult.” Wear that badge proudly.

    Step 5: Be Consistently Human This is the final nail in the coffin. Cry a little. Laugh mid-sentence. Tell an unrelated story about a pigeon that made you feel seen. Say, “Some days I want to scream into a cushion, but I’d probably miss the cushion and dislocate something.” They won’t know what to do. They prefer data over depth. You’ve brought personhood into their spreadsheet. Unforgivable.

    Bonus Round: Refuse to Be Fixed They’ll want a treatment plan, a “solution,” something they can tick off. Say, “I don’t want a cure today. I just want to be understood.” Boom. Consultant meltdown in three... two... one...

    In Summary: Be curious. Be messy. Be sarcastic. Be loud in a system that prefers whispers. And never, ever, let them forget that you're not a diagnosis—you’re a whole, infuriating, brilliant human being.

    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

    Here I am again—nobly fused to my chair like some relic of British stubbornness—gazing out of the window at the national weather forecast: wet, with a 100% chance of more wet. If grey skies were a national currency, we’d be laughing all the way to the food bank. Outside, the world carries on with its usual grim determination. Cars hum by on the main road, all in a hurry to get absolutely nowhere worth going. The local train wheezes around the loop like it’s got a purpose—bless it. And then the HSTs roar over the viaduct like they’re auditioning for a midlife crisis on wheels. What are they even rushing for? Everything’s still going to be crap when they get there. And the sheep—oh, the sheep. Standing around in the rain, bleating into the void like drunk students at a philosophy open mic. Not a brain cell between them, just damp wool and existential confusion. Honestly, if reincarnation's real, I must've pissed off someone important. Over all this melodrama, my music plays softly. Well, not so much softly as "pointlessly," because I've already got my own built-in horror soundtrack—tinnitus. That sweet, sweet screech that says “good morning” before I even open my eyes. Sometimes it hums, sometimes it screams, sometimes it sounds like someone’s microwaving a wasp inside my skull. Delightful. I remember when it first began—driving along the A39, minding my own business, when bam, reality decided to turn into a low-budget horror film. Been over ten years now. Ten years of having my own private noise machine jammed into my head. Wouldn't recommend it. As if that wasn’t already enough to make life feel like a practical joke, I’ve got MS too. The balance is shot. The fingers don’t work. The keyboard’s just a decorative item now. I dictate everything into my phone like I’m issuing commands to a particularly thick servant. Flashback time—around 25 years ago, I’m doing the washing up, pretending to be normal. Suddenly I notice the dishwater’s gone red. Thought the tomatoes had gotten out of hand—turns out, I’d stabbed myself in the hand. Didn’t feel a thing. Just stood there wondering if I’d invented blood-flavoured Fairy Liquid. That was just the start. Since then, I’ve had more accidents than a drunk toddler on roller skates. Broke both shoulders falling over. Multiple scars, most of them self-inflicted through sheer bloody-mindedness. Fell off a ladder, got back on it, fell off again. You’d think at some point I’d learn. But no—this is Britain. We don’t quit, we just keep making the same mistakes with added sarcasm. So now, I’ve accepted that my life is part soap opera, part public safety announcement. My body's turned into a rogue machine, and my brain’s mostly fog and loud noises. I don’t fear death—it’s not exactly hiding. Shows up every morning, waving from the corner like an overly familiar neighbour. And still, I sit here. Watching the rain, listening to the sheep, absorbing the relentless mediocrity of everything. It’s not tragic, it’s not heroic—it’s just... Tuesday. Sucks to be me? Oh, absolutely. But hey—if you can’t laugh at your own spectacular misfortune, what’s the point?

    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

    Ah, medical marijuana—the green leafed miracle that’s somehow both a blessing and a punchline. Let’s dive into this delightful plant that’s been making waves since it was legalized in the UK in 2018. Because, you know, nothing says “we care about your health” quite like a prescription for a plant that’s been around since the dawn of time. The Pharmaceutical Rollercoaster

    First off, let’s talk about the pharmaceutical drugs I’ve tried. You know, those little pills that promise to fix everything but instead turn you into a walking side effect machine? I’ve had more adverse reactions than a cat at a dog show. Horrific side effects? Check. Worsening conditions? Double check. It’s like a twisted game of “how much worse can it get?” Spoiler alert: it can get pretty bad. So, after a series of unfortunate events that would make even Lemony Snicket cringe, I decided to ditch the pills that were clearly plotting against me. Enter Medical Marijuana

    Now, let’s get to the good stuff—medical marijuana. This isn’t just any old weed; this is the fancy THC oil that’s supposed to be the answer to my prayers. And guess what? It actually helps! Who would’ve thought that a plant could do what a pharmacy full of pills couldn’t? It’s like finding out that the secret to happiness was hiding in your garden all along. The Benefits of THC

    So, what’s the deal with THC? Well, it’s the part of the cannabis plant that gets you a bit high, but don’t worry—I’m not permanently floating in a cloud of bliss. Instead, I’m just a bit more relaxed, which is a nice change from the usual tension that comes with living in a body that seems to have declared war on itself. The spasms? Fewer. The pain? More manageable. It’s like having a personal bodyguard that doesn’t mind if you’re still stuck in your wheelchair.

    And let’s not forget the added bonus of not having to deal with the nasty side effects that come with traditional medications. No more feeling like a zombie or dealing with the delightful surprise of new health issues popping up like unwanted guests at a party. Just me, my THC oil, and a slightly less miserable existence. A Bit of British Humor

    Now, I know what you’re thinking: “Isn’t it a bit cheeky to rely on a plant for relief?” Well, in a world where pharmaceuticals can turn you into a human guinea pig, I’d say it’s a bloody genius move. It’s like choosing to sip a nice cup of tea instead of downing a pint of something that tastes like regret.

    So, here’s to medical marijuana—the green leafed plant that’s not just a punchline but a genuine source of relief. It’s not a miracle cure, but it’s certainly a step in the right direction. And if it means I can manage my pain without feeling like I’ve been hit by a bus, then I’ll take it. Cheers to that! looking out for a cheap 2hand q100 wheelchair sick@mylivinghell.co.uk

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

    “Many years ago, I was sitting in my wheelchair, minding my own business, when some prat decided to stare at me as though I were some sort of sideshow attraction. I wasn’t in the mood to feed the animals, so I ignored him. But, of course, he carried on, relentless as ever. So, I finally decided to turn my manual wheelchair to face him—no small feat, mind you, as it required the sort of effort usually reserved for a gym session. Anyway, long story short, I eventually upgraded to an electric wheelchair—supposedly the height of luxury. But let’s be honest: it was absolute rubbish. It ended up in wheelchair heaven, alongside all the other overpriced tin cans I’ve wasted money on over the years. They brag about a 20-mile range—utter nonsense. Three miles if you’re feeling optimistic. And as for the handling? Let’s just say there were a few moments that nearly saw me flattened by clueless drivers. Good fun, really. Still, I do try to be polite—sometimes even managing a half-hearted smile if I’m feeling generous. Mind you, my brain’s always off on some tangent—‘that’s just my head for you’, as they say. Anyway, I finally rolled over to this bloke and asked, ever so nicely, ‘Do we have a problem here?’ He started spouting off—language not fit for polite conversation—and I stayed calm as you like. Little did he know, I’m no delicate flower. Yes, I’ve got multiple sclerosis, but I’ve also got a wicked laugh and a tendency to surprise. So, I stood up to my full height, took off my shirt (why not, eh?), and said, ‘Let’s have it then.’ He legged it like a startled rabbit. I laughed so hard I nearly fell back into my chair. My balance wasn’t great back then—worse now, if I’m honest. So, that’s that. A little detour in memory lane, with a nod to my mates Warlock Stumuzz and the crew—those were the days. Happy times, even if the wheelchairs were rubbish.” looking out for a cheap 2hand q100 wheelchair sick@mylivinghell.co.uk

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

    Well, it appears the universe has decided I need a front-row seat to the carnival of my own mind. Strange happenings, indeed. I’m left wondering whether I’m teetering on the edge of madness or just auditioning for the part of “eccentric hermit” in some cosmic sitcom. No, I’m not on any of those delightful MS meds, thank you very much. My body seems to view anything remotely pharmaceutical as a personal insult, so I let it run the show. The last time I had the pleasure of a “medication experiment,” it almost landed me an eight-day vacation in the hospital. And, as you can imagine, that wasn’t exactly on my bucket list. Anyway, back to the matter at hand—or perhaps I should say, misfiring nerves at hand. Am I seeing real things or just tripping on my own imagination? Who can say. My brain’s decided it’s time for a foggy intermission, complete with the usual “left-side-of-my-body hates me” encore. Lovely. The cherry on top? My tongue’s throwing a tantrum again with those oh-so-charming spasms, my gut nerves are having a rave, and the tinnitus is cranked up to eleven—like a personal heavy metal concert in my skull. So yes, everything’s perfectly normal around here.

             “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.”

  • Posted on

    It's 2 in the morning, and I've managed a whopping 20 minutes of sleep. What a treat! Looks like it's going to be another long night of tossing and turning. Sleep? What’s that? The pain in my stomach and lower intestines is off the charts, and breathing feels like a luxury I can’t afford. I’m just lying here, wondering if I’m going to survive the night. It’s a real joy, let me tell you—staring into the dark, clutching my pillow like it’s a life raft in a storm. Eventually, I might squeeze in a catnap until 6, if I’m lucky. Oh, and let’s not forget the delightful MS nerve pain that’s decided to throw a party in my body. The side of my throat is in spasm, and my left side is completely numb—because who doesn’t love a little extra excitement in the middle of the night? So, yeah, not exactly a good night.

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

    Hello World, Right now, I’m in the middle of a pretty severe MS flare-up, and I have to say, it’s been a tough one. My whole left side is numb, like I’ve had a stroke—or at least, that’s what it feels like. My balance is completely off, and the cognitive stuff is intense. It’s taking me forever to type this, and my head feels like a bowl of pea soup—just foggy and heavy. Lately, the front of my chest on the left side has started to feel... weird. I don’t even know how to describe it, but it’s like electrical shocks, and the nerves are on overdrive. It’s a feeling of total “headfrack” that I’m having trouble explaining, but I wanted to put it out there. Also, as if things weren't challenging enough, my wheelchair broke down, so now I’m stuck waiting on a call from the wheelchair services. Could be a long wait. In the meantime, I’m on the hunt for a cheap secondhand Q100 wheelchair. If anyone has tips or knows where to look, let me know! sick@mylivinghell.co.uk

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

    Welcome to the Dark, Brilliant, Weird Little Empire of Chronic Truth — ruled by none other than Warlock Dark. This is no ordinary blog. This is a bastion for the broken, a fortress of the funny-boned, a castle built from sarcasm, tea, and nerve damage. Here, the pain is real, the humour is darker than a GP's coffee, and the bladder never sleeps.

    📅 THE REAL STUFF (No Bull, No Fluff)

    MS isn’t just a condition. It’s a full-body existential prank. But for anyone newly diagnosed or wondering what the hell is happening to their nervous system, here’s a raw, real, non-terrifying breakdown:

    Numbness & Tingling — Fingers, toes, tongue, lips, everywhere. Like being slowly frosted by invisible fairies with bad intentions.

    Vision Problems — Blurry, ghosted, monocular mischief. Suddenly you're part-cyclops.

    Muscle Weakness & Spasms — Legs fold, arms tremble, and occasionally you Riverdance in your sleep.

    Fatigue — Not "tired." Obliterated. Drained like an iPhone from 2009.

    Cognitive Wipeouts — Losing track of the day, words, names, or why you're in the fridge again.

    Bladder Madness — Two-hour toilet timer. Never off-duty. Never apologetic.

    Pain — Burning, stabbing, aching. No metaphors required. It just hurts.

    🌿 THE NOT-INSANE NATURAL STUFF

    Move It — Yoga, stretching, tai chi, or just rolling your neck while cursing the heavens.

    Eat Real — Anti-inflammatory stuff helps. Leafy things. Omega-3s. Less deep-fried beige.

    Sleep Like You Mean It — Proper rest. Screens off. Mind down. Rage optional.

    Mind Rituals — Journaling, meditating, ranting to the void.

    Talk — To people. To animals. To plants. To invisible gods. Whatever keeps you tethered.

    🇬🇧 THE BRITISHLY BLEAK HUMOUR SECTION

    You know how it is:

    You wake up feeling like a boiled skeleton. You try to stand and your leg says, "LOL no." You make it to the loo just in time to almost make it. Your doctor smiles, hands you a leaflet written in 1986, and tells you to "try breathing exercises."

    And yet... you persevere. With a teacup in one hand, and the raw, burning rage of 10,000 misfiring neurons in the other.

    🕯️ QUOTES FROM WARLOCK DARK (Volume I)

    "My nerves are not broken — they are wild serpents, and I am learning to speak their tongue."

    "This is not weakness. This is weather. Storms live inside me."

    "I have seen the gods. They were waiting for their prescription refills too."

    "Fatigue is a form of time travel. You blink, and the day is gone."

    "This chair is not my end. It’s my war beast. Roll me to the gates, I dare you."

    "Magic lives in broken places. I’m practically radioactive."

    ✍️ OUTRO FROM THE CHRONIC THRONE

    So yes — the tongue is numb, the bladder’s a traitor, and the storm never really stops. But the mind? Still alive. Still wired weird. Still writing.

    Stay tuned for Volume II: "Fatigue & Other Black Magics"

    And remember: this is not recovery. This is reclamation.

    Long live the Warlock. Long live the Chronic Empire.

    🔮 Warlock Dark’s Quotes from the Edge (A.K.A. Mind Melt Time) Now, let’s go full myth. Let’s make MS epic. Let’s reforge this thing into weird, beautiful, apocalyptic poetry — courtesy of Warlock Dark, the ancient spirit of pain, mischief, and inconvenient wisdom:

    🕯️ “My nerves are not broken — they are wild serpents, and I am learning to speak their tongue.” — Warlock Dark

    🕯️ “This body is a cathedral struck by lightning. I don’t need healing. I need worship.”

    🕯️ “Doctors gave me a folder. I gave them a prophecy.”

    🕯️ “I have seen the inside of time. It crackles, it burns, it forgets its own name. That is what fatigue tastes like.”

    🕯️ “They call it multiple sclerosis. I call it the slow alchemy of becoming something unkillable.”

    🕯️ “Yes, I forget what day it is. Time has no meaning in the Warlock’s garden — only the storms remain.”

    🕯️ “My wheelchair is not a prison. It is a throne on wheels, gliding through the ruins of the ordinary.”

    🕯️ “The gods don’t answer my prayers. They take notes.”

    🕯️ Warlock Dark’s Arcane Quotes for the Chronically Bewitched (Collectible. Utterly unusable. Spiritually necessary.)

    “My nerves are not broken — they are wild serpents, and I am learning to speak their tongue.” – Warlock Dark, Volume I: ‘The Tingle Codex’

    “This is not weakness. This is weather. Storms live inside me.” – Warlock Dark, Volume II: ‘The Internal Forecast’

    “I have seen the gods. They were waiting for their prescription refills too.” – Warlock Dark, Volume IV: ‘Waiting Room Rituals’

    “Fatigue is a form of time travel. You blink, and the day is gone.” – Warlock Dark, Volume V: ‘Chronicles of the Missing Afternoon’

    “This chair is not my end. It’s my war beast. Roll me to the gates, I dare you.” – Warlock Dark, Volume IX: ‘Battle Hymns for the Seated’

    “Magic lives in broken places. I’m practically radioactive.” – Warlock Dark, Untitled Fragment, scrawled on a napkin and burned. The gods are deaf. The stars are mute. The dark is deep, and the dark is acute. But still—he speaks, in verse and venom, His tongue numb, but truth within 'em.

    For even in ruin, the Warlock remains, Wreathed in electric storms and phantom chains. He writes his spells in blood and pain, And dares the void to speak his name.

    looking to buy a cheap 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.”