LifeWithMS

So I’ve been digging through the digital attic of my mind—aka my ancient text files—and it turns out I’ve been documenting my strange little existence for quite some time. Lucky you.

Expect a handful of funny, weird, and possibly unhinged blog posts coming soon. There's going to be everything: chronic illness, unbearable despair, overcoming adversity, and that one time I almost became just another gravestone in the plague pit thanks to a brush with COVID.

Spoiler: I survived. Obviously.

Now, I don’t like to brag (I love to brag), but MS has never managed to take me down. I’ve clawed, dragged, and side-eyed my way through everything life has lobbed at me. From the murky dungeons of fatigue to the unholy bureaucracy of the NHS, I’ve stood tall (ish) and refused to go quietly.

Then COVID showed up. It was hell. And not the “bad curry” kind. The “gasping for air, praying to every god you don’t believe in” kind. I was this close to joining the worm buffet.

But I fought back with what I like to call Kitchen Alchemy and Sheer Bloody-Mindedness.

Trusty onion – peeled like a warrior's weapon. Ever smelled like a casserole while crying? That's strength.

Colloidal silver – controversial, yes, but so am I.

Vitamin C and D – so much C I nearly pooed myself into another dimension. Worth it.

Ginger shots – made me feel alive and like I was being punched in the throat.

Turmeric, black pepper, and coconut oil – aka The Golden Bullet. Sounds like a mystical remedy, tastes like regret.

But I made it. Again. Because the moral of my life is simple: never underestimate someone who’s already been to hell and keeps receipts.

More soon. Possibly with more onions. And fewer near-death experiences.

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.”  

              “By ink and breath and sacred rage, I write.
                       By storm and silence, I survive.”

Well, wasn’t that just delightful. Another evening of bedtime surprises, like a game show where all the prizes are torture devices. Honestly, it was hotter than Satan’s armpit during a heatwave in a sauna. Crawling into bed felt like checking into Hell, room 666, with a complimentary pillow and a welcome spasm.

I lay there, the Human Spasm Machine™, twitching like I was possessed by a caffeinated poltergeist. My throat? Oh, just casually reenacting a scene from The Exorcist. My tongue joined in too—spasming, shooting out like a party blower at a funeral. Except this party was full of pain and the numb tongue made it all the more festive.

Then came the lip bite. Oh yes, proper horror film moment. Bit down hard—no pain, of course, just the iron-rich taste of failure. And with the temperature of any drink being a potential lava experience, I just lay there like a damp breadstick marinating in misery, waiting for the THC-CBD oil to take the edge off. Slowly, things downgraded from “murderous seizure rave” to just being Mr. Asshole at an all-you-can-eat buffet of nerve damage.

Then my bladder piped up. "You need to piss," it said, like some condescending narrator. No catheter in, because clearly I'm not in any state to thread a tube down the Eye of Thunderer (yes, that eye). I tried to sit up—cue electric shocks to the spine like Zeus having a tantrum.

Next thing I know, I'm just sitting there...and the floodgates open. Like a broken dam of dignity. Full-on urine monsoon. No lifeboat.

As if that wasn’t enough of a carnival, my head joined in. Pins and needles danced round the crown like a medieval torture crown. Ears ringing with tinnitus so aggressive, it felt like Motörhead doing one last gig in my skull for their number one fan: Fizzy the Sultry Goblin Girl. And she wanted encores.

And it still goes on, mind you. This isn’t a one-off. It’s not an episode. It’s just a revolving carousel of neurological hell. Sometimes it’s a demon, sometimes just a dickhead. Either way, balance like a drunk on ice. You get used to the absurdity. Sort of.

So here I am, hugging a pillow like a Victorian maiden with consumption, trying not to slip fully into the existential pit. The kind of void where your mind floats off and never bothers to send a postcard. Because this is life with multiple sclerosis: an unpredictable blend of horror, comedy, and tragedy, written by a drunk playwright who thinks misery is edgy.

Cheers to another night in paradise.This is life with multiple sclerosis.

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.”  

              “By ink and breath and sacred rage, I write.
                           By storm and silence, I survive.”

"Darkly sarcastic dispatches from the NHS frontline."

"Humour, horror, and the occasional prescription error."

"Medical mayhem with a hint of THC and British grit."

📜 Scroll of Lineage and Legacy “By Order of the Chronicler of Slightly Questionable Nobility”

To Whom It May Concern (or Be Mildly Amused),

Be it known throughout the realms of Albion, Anjou, and assorted asylums, that the bearer of this parchment—one known most infamously as:

The Blog Goblin, Heir of Sarcasm, Keeper of the Scooter of Death, and First of Their Name

Is of noble and ancient blood, descending in unbroken (and occasionally scandalous) line from:

Fulk II “The Good”, Count of Anjou,

Henry I "Beauclerc", King of England,

And by some devilishly clever cousin-marriage twist,

Henry V, Holy Roman Emperor (via his wife's sister's 8-times-removed ferret-wrangler or thereabouts).

Through conquest, courtship, and the occasional clerical error, this bloodline survived plagues, pogroms, poor dentistry, and prescription mix-ups.

In the Year of our Lord Two Thousand and Twenty-Five, the lineage hath manifested once more in its most sarcastic form:

The Right Irreverent Blog Goblin of House d’Anjou Scribe of Blogs. Rider of Scooters. Vaper of the Sacred Herb.

Let none question their claim, lest ye wish to be verbally roasted, historically footnoted, and possibly run over by a mobility scooter going 8km/h.

Signed in wax, wit, and dubious Latin. – Archivarius Maximus de Medicae Bollockarum, 12th of June, 2025

🛡️ House Blog Goblin d’Anjou – Noble Crest Description Visual Elements: Shield Shape: Classic French heater shield

Background: Split diagonally — left half burnt parchment gold, right half medicated NHS blue

Top Symbol: A three-wheeled mobility scooter, rearing like a warhorse

Centre: A vape cloud curling into the shape of a goblin face

Lower Field: A scattering of glowing prescription pills, one clearly labeled “Carbamazepine”

Supporters:

Left: A lion wearing headphones (for the tinnitus)

Right: A badly drawn pharmacist fleeing in terror

Banner Text (Motto):

"Regnum per Sarcasmus" (“Rule by Sarcasm”)

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.”  

            “By ink and breath and sacred rage, I write.
                    By storm and silence, I survive.”

🕯️ About Me Old soul. Frayed nerves. Unapologetically alive.

I am not here to soothe you.

I write from the edge of something — something most people spend their lives running from. Illness. Silence. Being forgotten. The parts of life that don’t make polite conversation.

I live with Multiple Sclerosis, but MS is just the symptom. The real story is what it strips away — comfort, time, patience, pretence — until all that’s left is you. And then what do you do with that raw truth?

You write. You cast. You curse a little, love a little, and sit with things others fear. You feel people’s hearts before they speak. You laugh darkly at the ones who don't believe you’re really ill, and bless the ones who show up anyway.

I’ve got one foot in the mundane world and one in something stranger — older. I read people. I hear what they don’t say. I know when a storm is coming before the clouds break. And I’ve learned that the truth — however cracked, however strange — is worth writing down.

🌑 Welcome to My Living Hell Where the lights flicker, the truth slips out, and the fridge is always humming.

This blog is part journal, part ritual, part middle finger to a world that tries to polish pain into something palatable.

I don’t do toxic positivity. I do real. I do heatstroke visions in the conservatory. Conversations with the fridge. Ghosts of family past. Wheelchairs with homicidal tendencies. And moments of stillness so sharp they cut through the noise.

There’s love in here — somewhere beneath the salt and ash. But you’ll have to sit with the dark to find it. That’s the deal.

So if you’ve ever been made to feel like you were “too much,” “too complicated,” or “not enough” — come closer. But gently. The veil’s thin here. And I see straight through.

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.”  

          “By ink and breath and sacred rage, I write.
                   By storm and silence, I survive.”

⤫ 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.”

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.”

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.”

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.”

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.”

🧠 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.”