Multiple sclerosis  is My Living Hell

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  • Posted on
    "A Personal Journey: My Coat of Arms and Neurons."

    well this appears to be my coat of arms it was added into an old image of brain neurons I think I could explain what it all means, but I am to knackered lol and I doubt any one will ever see this except me lol

    next day....

    Custom Coat of Arms — Concept Description Shield (Escutcheon): Main colors: Black background with red and silver/gold elements — representing strength, mystery, and ancient nobility.

    Design:

    Top Left Quadrant: A silver pentagram, representing mysticism and your identity as a psychic and warlock.

    Top Right Quadrant: A stylised black cat, seated and regal, symbolising your favourite animal and intuition.

    Bottom Left Quadrant: A golden crown, nodding to your royal ancestry — Edward I, no less.

    Bottom Right Quadrant: A red MS awareness ribbon, stylised into a sword shape to represent being a warrior despite adversity.

    Crest (top of the helmet): A silver raven with glowing red eyes, perched on a stack of spellbooks and USB drives — representing wisdom, tech history, and your dual mastery of the mystical and the digital.

    Mantling (decorative fabric): Flowing black and crimson, tattered at the edges — not worn, but weathered with experience and humour.

    Supporters (creatures on either side of the shield): Left: A ghostly knight in cracked armour — to symbolise your fighting spirit and long lineage.

    Right: A sarcastic black cat wearing a crown askew — a bit of cheeky English humour with teeth.

    Motto (on scroll beneath): “Well… Is That It?” A perfect dry, witty summation of both a life well-fought and your no-nonsense view of it.

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

    As I look back over the years of my spiritual awakening, I see a path shaped by intuition, nature, love, and deep inner truths. It hasn't always been easy—there were moments of doubt, unlearning, and rebirth—but through it all, a few guiding principles stayed with me. One of the most sacred? The Wiccan Rede.

    When I first discovered the Rede, it felt like coming home. Its verses weren’t just poetic—they echoed the values I had begun to live by: harmony, accountability, connection to nature, and the power of intention.

    The Rede opens with a call to integrity:

    "Bide within the Law you must, in perfect Love and perfect Trust." These words taught me that spiritual power means nothing without compassion and respect—for myself, for others, and for the Earth.

    I found comfort in the way it honors the Moon, the winds, the changing seasons, and the trees. The rhythm of the Rede helped me sync with the natural world, reminding me that we are never separate from it.

    It also deepened my practice of magick—not just as ritual, but as conscious living. It taught me to:

    Speak less, listen more

    Work with nature, not against it

    Celebrate the Wheel of the Year, honoring both light and shadow

    Most importantly, the Rede carries the essence of Wiccan ethics in just eight words:

    "An it harm none, do what ye will." This became a cornerstone in my spiritual evolution. It doesn't mean doing whatever I want—it means living with freedom and responsibility. Every choice, every spell, every word has energy. That awareness changed me.

    Over the years, this Rede became more than a belief system—it became a living code. A gentle reminder that love, balance, and intention are what truly matter.

    If you're on your own awakening journey, I share this not as a rulebook, but as inspiration. Let your path be yours. Listen to your soul. And above all, walk gently in the world.

    🌿 The Wiccan Rede — A Modern Reflection

    Here's a modernized and respectful version of The Wiccan Rede (Full Version) that keeps its spiritual essence but uses more accessible, contemporary language. It’s written to honor the original, while making it easier to connect with for modern readers, especially those on a spiritual awakening journey:

             The Wiccan Rede — A Modern Reflection
    

    Live by the natural laws with love and trust in your heart. Live your life fully, and let others live theirs. Give and receive with fairness.

    When casting your sacred circle, walk it three times to keep negative energy out. Speak your spells with clear intention—rhyming helps focus the energy.

    Stay observant and gentle. Speak less, listen more. Respect the Ancient Ones in word and action; let love and light guide your path.

    Move clockwise with the waxing moon, and celebrate with joyful chants. Move counterclockwise when the moon wanes, for reflection and release.

    When the New Moon rises, honor the Goddess with reverence. At the Full Moon, focus on manifesting your heart’s desires.

    When the North wind blows strong, stay grounded and protect your space. With the East wind comes fresh energy—embrace new beginnings.

    The South wind brings passion and love. The West wind soothes and brings emotional peace.

    Nine sacred woods feed the ritual fire—each with its own power: Birch for beginnings, Oak for strength, Rowan for protection. Willow brings connection to the afterlife. Hawthorn draws faerie energy. Hazel enhances wisdom. Apple brings love and fertility. Vine offers joy and celebration. Fir represents eternal life. But never burn Elder—it’s sacred to the Goddess.

    Celebrate the year through the Wheel of the Sabbats: Samhain marks endings and new beginnings. Imbolc is a time of hope and early growth. Beltane celebrates life and passion. Lammas honors harvest and inner strength.

    Mark the solstices and equinoxes too: Yule celebrates the return of light. Ostara brings balance and new life. Litha is when light peaks and power surges. Mabon is the time of reflection and giving thanks.

    Learn from the earth—plants, flowers, and trees carry ancient wisdom. Speak truth, and stay true to your needs—don’t give in to greed.

    Avoid foolishness and drama; keep your circle kind and wise. Greet others with warmth, and part with kindness.

    Follow the Threefold Law—whatever you send out comes back three times over, for better or worse. If trouble comes, wear your symbol with pride and protection.

    Be honest in love, unless love is dishonest with you.

    And always remember the heart of the Rede:

    "If it harms none, do as you will."

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

    So here we are, diving headfirst into the weirdness that is my life — or what’s left of it after being slowly, methodically gnawed apart by progressive multiple sclerosis. Charming, right?

    I knew things weren’t quite right from the start. I wasn’t imagining it, pretending, or trying to skip PE. I was nine years old with legs like jelly and nerves that fired like broken Christmas lights. I knew something was off. My body wasn’t working properly. It never has. And it’s been downhill ever since — no brakes, no map, no helpful roadside breakdown service.

    Spoiler alert: I have MS. Progressive MS. The slow-burn, never-look-back, “enjoy the ride, it only gets worse” variety. And I’ve been fighting it for over 50 years — most of that in silence. Unheard. Unseen. Ignored. Dismissed. “Attention-seeking.” “Hysterical.” You know the drill.

    Back then, there was no MRI magic or lumbar puncture fun day out. No one believed me. No one wanted to. The doctors — ah, bless them — thought I was putting it on. For the drama, I suppose. Because pretending to lose control of your limbs is all the rage when you're a kid trying to survive school.

    Forty years. That’s how long it took them to finally notice. Forty. Can you even fathom that? I had all the textbook symptoms, but apparently, I was just making a lifestyle choice — you know, becoming progressively disabled for the vibes.

    Eventually, they finally dragged me into hospital for all the fancy tests that proved, lo and behold: I wasn’t a liar, I wasn’t mad — I was just slowly falling apart from something called MS. Ta-dah. Gold star. Thanks for coming.

    And honestly? It was a relief. Not the diagnosis — that sucked. But the proof. The closure. The validation. After decades of being told it was in my head, turns out it was in my spinal cord all along. Go figure.

    But here’s the twist — I didn’t just survive that hell. Somewhere along the line, I changed. Call it spiritual, call it delusional, I don’t really care — I had what you might call a cosmic chat with the universe. Serapis Bey (look him up if you like mystics with style) paid me a visit, and something clicked. I shifted. I transformed. Something deep happened.

    I’m not the person I used to be. Not even close. And people who knew me before can’t believe the person standing before them now. It’s like I underwent a total soul renovation with added glitter and spiritual scaffolding.

    This world isn’t built for people like me — the weird, the ill, the eccentric, the inconvenient. If you’re different, you get ignored. Gaslit. Written off. But I’m still here. And I’ve got a voice, even if some days I barely have the strength to lift a cup of tea.

    So here’s my truth: I’m strange. I’m spiritual. I’m sarcastic. I’m raging at the system but laughing through the pain. I have MS — but I’m still me.

    To the others out there, like me — the unheard, the “difficult cases,” the ones who’ve been shoved into the corner because they didn’t tick the easy boxes: you’re not alone.

    Don’t let this world break you. Let it sharpen you.

    Rebuild. Reclaim. Be weird. Be you.

    And if you’re ever in the dark, just remember — some of us are out here, lighting the way with rage, humour, and a whole lot of “f*** you” to the system that failed us.

    🧠💥 40 Years Misdiagnosed. Still Here. Still Loud. They told me it was in my head. It was — just also in my spine, my nerves, and every inch of my being. This is the story of living with undiagnosed progressive MS for over 40 years. Ignored. Dismissed. Unheard. And yet — I never gave up. I changed. Spiritually, physically, mentally. I became something else. This one’s for the misfits, the chronically ill, the eccentric warriors who’ve been told to sit down and shut up. We’re not going anywhere.

    🕊️ Who is Serapis Bey? Serapis Bey is known as an Ascended Master — a spiritual teacher who once walked the Earth and has since transcended to guide others on their soul’s evolution. Often associated with the energy of discipline, transformation, and spiritual rebirth, he’s considered the keeper of the White Ray of Ascension.

    In short? He’s the no-nonsense cosmic coach who shows up when your life’s gone full chaos and it’s time to rise from the ashes — stronger, clearer, and more you than ever.

    He helps guide those going through massive life shifts, especially when it feels like you're being spiritually remade from the inside out. Think: divine tough love with soul-level purpose.

    sick@mylivinghell.co.uk

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

    ⤫ The Warlock’s Curse ⤫

    In the still of the ache where the stars never shine, There sits the Warlock, warped out of time. Throne of rust, wheels cracked with regret, He murmurs to ghosts he hasn’t named yet.

    His hands remember spells he’s long since forgotten, Fingers tingling with truths turned rotten. Once he conjured fire with a whisper and grin— Now the spark mocks him, trembling within.

    A crown of wires, a robe of pain, Nerves like serpents—hissing through the brain. His staff is a drip, his runes are pills, He chants in silence on pharmacy hills.

    Oh, the moons he danced beneath, drunk on starlight— Now watch him crawl through the blacker night. No sleep for the hexed, no peace for the damned, Just a bladder’s clock and death’s cold hand.

    Chainsaw dreams, electric and wild, But even a Warlock is fate’s unwanted child. Albertine watches, her eyes full of years, She sees through the smoke, the jokes, the tears.

    He laughs at the garden, the weed-wielding wraith, Remembers the ramp and short-circuited faith. Magic once sparked in the marrow of his spine— Now the lightning is cruel, and the power’s malign.

    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 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.”
    
  • Posted on

    Good afternoon from the disaster zone formerly known as my neck.

    Yes, today started with that familiar electrical storm in the spine — lightning bolts of agony shooting through my vertebrae like Zeus on a three-day bender. Can’t look up, can’t look down, can’t look sideways. My neck has all the flexibility of a rusted garden gate. I must look like one of those haunted portrait paintings that just follows you with its eyes, because that’s all that bloody moves — the eyes. Stiff as a Victorian corpse and twice as charming.

    And then there's the tingling. Lips? Tingle. Hands? Tingle. Feet? You guessed it — tingle. Like my whole body's been plugged into a cheap fairy light circuit from Poundland. If this is what becoming bionic feels like, I want a bloody refund.

    Sleep? Oh, sleep was a laugh riot. I spent the night spasming like a haunted marionette and woke up every two hours for a command performance in the Great Lavatory Tour of 2025. I swear, I don't drink after 6pm, yet I’m peeing like a champion racehorse on a hydration binge. It’s like my kidneys are in training for a relay race. Every two hours, like clockwork — up, shuffle, sit, curse, flush. Repeat. Lavatory luxury, five stars. Soft toilet roll and existential dread provided.

    Of course, while lying awake in this perfect hellscape of pins, needles, pain, and peeing, my brain decides now’s the perfect time to go full hamster wheel. Spinning at 500 billion miles per hour, running through every bad decision I’ve ever made, plus some I probably haven’t gotten around to yet. Cheers, brain.

    This morning, I managed to drag myself to my throne — my battered old chair — and gaze out the window like some Victorian invalid. And there he was. The Manic Weed Wacker of Suburbia. Out in the garden again, whacking everything in sight. I swear he’s part weed trimmer, part chaos demon. I watched, sipped my drink (through a numb mouth, because yes, my entire face is numb now — why not?), and chuckled remembering the time he electrocuted himself lifting my wheelchair ramp smashing it into the light tube. Classic. Man vs. light tube. tube won.

    And yes, I asked my beloved Albertine — the saint, the legend, the long-suffering wife of 40 years — if I could buy a chainsaw. An electric one, mind you. Eco-friendly and all that. You should’ve seen her face. Absolute horror. Like I’d just announced I was auditioning for "Britain’s Got Terror." I mean, can you imagine? Me, in a knackered wheelchair, chainsawing through hedges like Leatherface with mobility issues. I'd make the evening news before I got through the first shrub.

    Suffice to say, the chainsaw dream is on pause. Possibly forever. Probably for the best. Wouldn’t want to give Mr. Dark too many ideas.

    Anyway, today’s tally:

    Numb mouth ✅

    Tingly everything ✅

    Brain fog thick enough to get lost in ✅

    Blood pressure reading so high it qualifies as an emergency broadcast ✅

    It sucks to be me today. But hey, at least I didn’t accidentally decapitate a geranium or myself.

    If you’re reading this and having a better day — congrats. If not, welcome to the club. Bring your own toilet paper and existential dread.

    Until next time, The Chainless Warlock

    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.”
    
  • Posted on

    So, picture this: I’m staring at my latest MRI, and what do I see? A delightful grey mush, like someone dumped a cumulus cloud into my skull and said, “There — best of luck.” Not a brain so much as a haunted fog machine on the fritz. The consultant just looked at me, that classic NHS stare — part clinical, part bewildered awe — and said, “I genuinely don’t know how you’re still functioning.” Cheers, doc. Real vote of confidence, that.

    Let me tell you, the damage isn’t exactly localised. It’s like MS threw a party in my central nervous system and invited the entire cast of The Exorcist. Corpus callosum? Fracked. Spine? Swiss cheese. Bowels? Shall we say… unpredictable. Heart? Oh, now that’s the fun bit — apparently Warlock (that’s my MS, in case you’re new here) decided to throw in a few heart attacks just to keep things lively. Four so far. Three I stayed home for, because what’s the NHS going to do, offer me tea and a waiting list? The fourth landed me in hospital. Frankly, I wish I’d stayed in bed.

    Not that the staff weren’t brilliant. They were — heroic, overstretched, masked-up angels during that delightful viral apocalypse we all lived through. But I came home… different. Breathing like Darth Vader in a heatwave, heart working at 60% capacity, kidneys sulking, and — oh, cherry on top — they found a tumour on my spine. Thankfully not the nasty sort, but still, another surprise guest in this body of horrors.

    That was about seven years ago, I think. Time’s a blur when your memory’s patchy and reality feels like a badly written sitcom. I stopped going to the doctors after that. They didn’t get it. Didn’t get me. Kept staring at the clipboard like it might contain answers. It didn’t. The only thing worse than being ill is being misunderstood while ill — feeling like death, terrified, stressed out of your gourd, and being told, “There’s nothing more we can do.” You know what that does to a person?

    Panic. Raw, soul-rattling, scream-into-the-pillow panic. Ever wanted to die just so the pain would stop? I have. Ever lived through that every day without a break? Welcome to the fracking carnival.

    I’m already eccentric — now I’m full-on arcane. Friends? Gone. Either dead, or ran the second I said “diagnosis.” Couldn’t handle it. Couldn’t handle me. Pity, really. I had a lot to give. Still do. But when you’re this far off the map, people stop visiting.

    I don’t trust anyone anymore. Life’s become one long stress fracture. I’ve got knowledge in my bones, wisdom hard-won from staring death down while sitting in a mobility scooter with a wonky wheel — and no one to pass it to. That’s the real tragedy. When your gifts have nowhere to go, no one to receive them.

    This is part rant. Part confession. Part battle cry.

    This is me.

    Still here. Still kicking (even if my legs don't always agree). Still making jokes in the dark because it’s the only light I’ve got.

    And Warlock? He can frack right off — I’m not done 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

    Good afternoon, dear reader. Or morning. Or night. Honestly, I’ve no clue what time it is anymore — linear time is so last century. Especially when you're navigating life with a brain that takes more detours than a lost postman.

    So there I was, lost. Not just in the existential, "why are we here" sense — although, yes, that too — but literally lost. On a street I’d supposedly lived on. Only yards from home, yet absolutely no idea where I was. Classic me. Classic MS. Brain fog? No, more like brain Swamp of Sadness. I was a knight on a scooter, aimlessly gliding through the suburban void like some sort of Tesco-bagged Mad Max.

    I don’t remember much about those old houses anymore. I’ve had more addresses than MI6. Just vague shadows of places I might have haunted. Faces and memories lost in the thick soup of neurological nonsense. But that’s fine. Who needs memory when you've got spellcheck and sarcasm?

    Let me introduce you to Mr. Dark, or Warlock — my MS. Yes, I’ve named him. Because when a condition lives rent-free in your body, you may as well give it a proper British title. Warlock is that mysterious, moody flatmate who always steals your energy, ruins your coordination, and never picks up after himself. But hey, sometimes he puts on a show. A full-blown, outrageously bizarre cabaret of collapsing limbs, surreal thoughts, and a healthy disregard for social norms. Top entertainment from the abyss.

    The thing is, somewhere in all this, I stopped giving a toss about what people thought. I know, shocking, right? I’m intelligent — properly intelligent — just not in the “tick these boxes and say please” kind of way. The real tragedy? Most of you lot just didn’t know which buttons to press. Pity. Could’ve been glorious.

    And then there's the current saga: my wheelchair’s knackered. So I'm stuck using this three-wheeled scooter of doom. It’s meant to be a mobility aid but functions more like a mechanical prank sent by Satan. Nearly tossed me under a bus the other day. Cheers, Warlock. Nothing like flirting with death at 8mph while dodging potholes and judgmental pedestrians.

    Honestly, I find it funny. You have to. Either you laugh or you scream, and I’ve screamed enough into the void to know it doesn’t echo back.

    So here I am. A sarcastic wizard on wheels, battling gravity, memory, and the absurdity of existence. Is this real? Is this fake? Fracked if I know. I gave up on the Earth-plane’s opinion years ago.

    Stay tuned for next week, when I try to open a tin of soup without summoning a demon.

    Cheerio. 🖤

    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

    Congratulations, you’ve woken up! Time to play: What’s Broken Today?

    Your goal: make it through the day without crying, swearing at your legs, or Googling “is this normal or am I dying?”

    Choose your path below. Choose wisely. Or don’t. MS doesn’t care.

    ☀️ Morning – The Wake-Up Lottery You open your eyes. Sort of. Everything's a bit... off.

    Do you: A) Feel rested and refreshed? [HAHAHAHA nope. Roll again.]

    B) Feel like you’ve been mugged by exhaustion in your sleep? → Fatigue wins the round. Take 5 damage to motivation.

    C) Can’t feel your left arm? → You’ve unlocked: Morning Numbness Mode. Hope you didn’t need to hold anything today.

    🚿 The Shower Scene Hot water. The great equaliser. But today, your body has other plans.

    Do you: A) Take a normal shower like a normal person? [Error 404: Normal not found.]

    B) Overheat and nearly pass out while conditioning your hair? → Heat Sensitivity unlocked. You’re now a human candle. Stay cool (literally).

    C) Drop the soap three times because your fingers forgot how to grip? → Coordination loss! Bonus: Slippery floor, surprise danger!

    ☕ Breakfast Choices Time to eat. Or attempt it. Your hand-to-mouth skills are on a random difficulty setting.

    Do you: A) Make eggs without issue? [Dream big, champ.]

    B) Forget what you were making mid-toast and stand staring at the kettle? → Cognitive Fog strikes again! You are now late and confused, but still hungry.

    C) Burn your tongue because it took too long to realise your tea was hot? → Nerve damage for breakfast, anyone?

    🧑‍💻 Midday Mayhem Time to work, or function, or pretend to. Let’s see what fresh chaos arrives.

    Do you: A) Sit comfortably and type with ease? [Only in the fantasy genre.]

    B) Experience sudden eye twitching, blurry vision and shooting pain down your spine? → Bingo! You’ve triggered Lhermitte’s Sign. Bonus: optical migraine starter pack!

    C) Realise you’ve been sitting weird and now your legs are asleep? → Double numb legs – the sequel no one asked for.

    🛋️ Afternoon Fun: Nap or Collapse? Fatigue is back. It brought friends.

    Do you: A) Push through like a hero? → Well done, you now feel like a zombie that regrets everything.

    B) Nap for 2 hours and wake up in a new dimension with no idea what year it is? → Temporal Confusion Mode Activated.

    🌙 Evening – The Grand Finale The body is tired. The brain is soup. Dinner is optional.

    Do you: A) Cook a meal? Narrator: They did not.

    B) Order takeaway because your hands are too shaky to hold a knife? → Valid choice. +5 sanity. -£20 bank account.

    C) Cry because your legs spasm during a TV ad for toothpaste? → MS Mood Swing. Roll for emotional stability. It’s a 1.

    🏁 The End (Until Tomorrow) You’ve survived another round of “What Will MS Ruin Today?” Your reward: a weird new twitch in your eye, and the chance to play again tomorrow.

    ✨ Bonus Content: Cheat Codes for Coping Sarcasm: Unlimited ammo.

    Snacks: +10 to morale.

    Naps: Use liberally. Ignore haters.

    Friends who get it: Legendary tier loot.

    People who say “But you don’t look sick!”: Throw them into the sun.

    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

    So, you’ve been diagnosed with MS. And now… you get to explain it to your family — the ones who think “you look fine” means “you must be fine,” and probably believe turmeric and yoga can cure brain damage. Here’s how to break it down for them without getting arrested for arson.

    🔥 Step 1: Accept They Know Absolutely Nothing You say, “Multiple Sclerosis.” They say, “Isn’t that like arthritis? Or depression? Or being a bit tired?” Correct response: “No, darling. MS is when your immune system plays Pac-Man with your brain and spine. I’m basically on fire internally while appearing vaguely functional.”

    🎯 Step 2: Use Analogies for the Visually Confused Science talk = blank stares. Try this: “Imagine all the wires in your house are fraying. Lights flicker, the toaster runs the shower, and the WiFi’s possessed. That’s my nervous system. I’m the house.” Still confused? Great. You’re halfway to understanding MS.

    🛌 Step 3: Explain Fatigue, Because No One Understands It No, it’s not “a bit tired.” It’s “I stood up, and now I need three hours to recover and possibly an exorcism.” Try: “Imagine having the flu, running a marathon, and then trying to solve algebra underwater. With a hangover. That’s what ‘fatigue’ feels like — on a good day.”

    👀 Step 4: The Legendary “But You Look Fine!” Ah yes. The battle cry of the wilfully oblivious. Response options include: “So does a bomb before it explodes.” “Thanks! You look emotionally fine, and yet, here we are.” “I also look like I have patience. Clearly, appearances are misleading.”

    🚽 Step 5: Embrace the Awkward Topics Bladder issues. Bowel misadventures. Numb bits. Electric shocks for no reason. If they get squeamish, lean in: “Yes, sometimes my body forgets how to wee properly. Or feels like it’s on fire. Or I walk like I’ve been tranquilised at a wedding. That’s MS. It doesn’t care about your comfort zone.”

    📚 Step 6: Give Them the “Google It” Clause You are not WebMD in human form. You're tired. You're done. Say: “I’ll send you one good article or video. If you still think I should just ‘go gluten-free and do Pilates,’ I will pelt you with hummus.”

    🤡 Step 7: Laugh, Because the Alternative Is Screaming MS is ridiculous. It’s surreal. And it doesn’t come with a guidebook. So own it: “I forget words mid-sentence. I fall over nothing. Sometimes my feet go on holiday without telling the rest of me. No, I’m not drunk. I’m just… uniquely wired now.”

    🧠 Final Words of Wisdom You don’t owe anyone a perfect explanation. If they get it, great. If not — that's not your job to fix. Educate where you can, sass where required, and when in doubt: nap, snack, and protect your peace like it's the last chocolate biscuit on Earth. “What It’s Like Having MS: A Choose-Your-Own-Symptom Adventure” — because chronic illness should at least come with a plot twist

    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

    🧠 Symptoms of MS: The Obvious Greatest Hits

    Tired for No Reason You slept 12 hours, drank 3 coffees, and you're still knackered. Congratulations, it’s not laziness — it’s fatigue. Chronic, soul-sucking, "please let me nap in the cereal aisle" fatigue.

    Wobbly Walking Walking like you’ve had 8 pints… at 9am… while stone-cold sober. Balance issues, because apparently your legs didn’t get the memo from your brain.

    Blurry or Double Vision Your eyes play ‘spot the difference’ with reality. One of them’s lying, and neither has a clue what they’re doing.

    Numbness or Tingling That fun pins-and-needles feeling. Except it’s not from sitting funny — it’s from your brain throwing a tantrum.

    Weakness Arms, legs, or both suddenly feeling like cooked spaghetti. Good luck opening jars. Or standing. Or functioning.

    Slurred Speech You sound like you’re drunk, even if you’re painfully sober and just trying to ask for a biscuit. Bathroom Betrayal Bladder and bowels doing their own thing. Urgency, accidents, or the joy of constipation that could turn coal into diamonds.

    Mood Swings Crying because the teabag split. Laughing maniacally at absolutely nothing. Just another Tuesday with your brain on shuffle.

    🎩 The Lesser-Known (But Equally Rubbish) MS Delights

    Electric Shock Sensation (Lhermitte’s Sign) You tilt your head and BAM — your spine thinks it’s been struck by lightning. For no reason. Because why not?

    Itching Like You're Infested with Ghost Fleas No rash, no bites, just you, scratching like a Victorian chimney sweep with scabies.

    Heat Sensitivity Summer? Oh no, darling. A hot shower might as well be lava. Prepare to wilt like a sad Victorian poet.

    Cognitive Fuzz (Brain Fog) You walk into a room and forget why. You forget words. You put your phone in the fridge. Basically, your brain’s on “buffering…”

    Spasticity Muscles tightening up like you're trying to hold in a fart during a funeral. Only it’s involuntary. And constant.

    Sexual Dysfunction The romantic thrill of numb genitals and nerves that ghost you mid-pleasure. How sexy.

    Speech and Swallowing Problems Chewing and talking becomes a weirdly choreographed ballet of not choking. Miss a beat, and it’s dinner-on-the-ceiling time.

    Hearing Loss (Rare, but possible) What? Sorry? Come again? — not selective hearing, just your ears being as unreliable as the rest of your nervous system.

    Final Thoughts: MS — it's like your brain has installed Windows 95 and keeps trying to run modern life. Expect random errors, lagging limbs, and the occasional blue screen of emotional doom. You didn’t ask for this mess, but here we are. Stay strong. Laugh darkly. Nap often.

    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.”