The weird eccentric ramblings of a multiple sclerosis sufferer

A very good morning from the slightly crispy edge of reality.

It’s early, the sun’s already threatening to scorch us into lizards, and I’m camped in front of the fridge like it’s a portal to Narnia—except Narnia’s got central air. The tinnitus is humming away like some deranged synthwave backing track, and I’m contemplating whether I dare mount my three-wheeled Scooter of Death for the weekly pilgrimage to the chemist.

Yes, the chemist. That temple of modern medicine where, thanks to the miracle of automation, I once again got someone else’s prescription. I swear, it’s like a game show:

“Step right up and spin the magical dispensing machine! Today’s lucky contestant wins… Sertraline!”

Antidepressants. Brilliant. Just what someone with multiple sclerosis needs to top off the cocktail. Meanwhile, someone out there is probably wondering what the hell carbamazepine is and why their depression suddenly feels like a seizure.

Dr. Fist and the Dental Apocalypse

As if that weren’t enough chaos for one day, I got a call from my dentist—well, former dentist. He’s out of action with a broken fist. Yes, a broken fist. I didn’t ask. I daren’t ask. My imagination’s already taken that one to some very questionable places. Possibly involving a disgruntled patient or a bar stool.

So now I’m off to meet a new dentist. Let’s hope I don’t draw Dr. Pain, DDS from the horror movie extras department. Probably someone who sharpens their tools on wrought iron fences and thinks anesthesia is for the weak.

Which is a shame, really, because Dr. Fist (I’m afraid he’ll always be “Dr. Fist” now) was actually the best dentist I’ve ever had. Gentle, non-threatening, and didn’t treat my jaw like a door hinge in need of WD-40. I wish him a speedy recovery—and maybe a good pair of gloves.

The NHS, Surprisingly… Not Awful?

In a refreshing twist of fate, I had my first appointment with the new NHS health centre today. Braced myself for the usual bureaucratic disaster—but shocker: the doctor was great.

Listened. Advised. Seemed human. When you’ve got full-blown White Coat Syndrome, that’s a miracle. For the uninitiated:

White Coat Syndrome: When your blood pressure hits Olympic pole-vaulting levels simply because you walked into a room with someone in a lab coat. It’s not illness—it’s sheer, uncut medical anxiety.™

So, small miracle there. I might actually trust this new place. That's not a sentence I say lightly.

Vape, Clouds, and the Eternal Wait for Sanity Back to the window—clouds are looming, the heat’s easing, and it’s time for my medical cannabis vape and a bit of THC oil. Helps with the pain and the spasms. And also with the absurdity of life, which seems to be running at full volume today.

Anyway, that’s enough rambling for one morning. If you made it this far, you officially qualify for a biscuit. Possibly two. Rich Tea if you’re feeling ironic.

Thanks for dropping by.

Until next time, stay cool, stay sarcastic, and for heaven’s sake—check your meds before you leave the chemist. You never know what flavour of mental health you might accidentally walk out with. Cheers, stay cool, and remember: if the prescription machine gives you methadone next week, try not to start a jazz band.

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.”

My Living Hell

One man’s journey through chronic illness, broken systems, and uncooperative furniture — with swearing, sarcasm, and an unhealthy relationship with the freezer section.

Today, I nearly married the fridge. 26 degrees. Feels like 46. Conservatory? A balmy 102°F — or as we call it here in Britain, hell’s greenhouse. I’ve got sweat in places I didn’t know had sweat glands. The fridge freezer doors are wide open and I’m contemplating whether it’s physically possible to live in the salad drawer.

Breathing feels like trying to inhale through a wet sock. My throat’s gone numb, hands tingling, lips buzzing like I’ve been snogging a faulty toaster. Blood pressure’s fine, which is amazing considering I feel like a Victorian widow with the vapours. There’s that heaviness in the air too — that classic “a storm is coming” feeling. Which I love, obviously. Thunderstorms are my favourite. There's something deeply comforting about watching the sky lose its temper when you're already halfway there yourself.

MS and heat are mortal enemies. I say enemies, but it’s more like they’re in a toxic relationship and I’m the child stuck in the middle. My body treats summer like a personal insult. I melt, I twitch, and at some point I lose the ability to speak without sounding like a cursed Victorian ghost whispering through a tin can.

Then there’s the wheelchair situation. My old chair went to that great battery charger in the sky, so I’m currently using a three-wheeled death trap that turns every trip to the shop into a scene from Wacky Races: Disability Edition. What I need is a Q100. What I have is a self-aware mobility device with a thirst for chaos. Honestly, it’s like trying to pilot a shopping trolley with a grudge.

Meanwhile, my fridge — bless it — is wheezing under the pressure, valiantly trying to keep my frozen peas solid while I slap a bag of veg on my forehead like it’s the world’s saddest spa day. Ice packs? Nah. I’m straight-up cuddling frozen chips now. Dignity left the building sometime around 11am.

Music's blasting — something mellow, dark and floaty. MDB. Morcheeba. That hazy, dreamlike soundtrack to heat-induced madness. I’m sipping Disprin like it’s vintage whisky and popping antihistamines like I’m playing pharmaceutical roulette. Every med I take gives me a new side effect, like it’s trying to outdo the MS in the 'who can ruin today more' competition.

Still. Back into the kitchen I go, seeking solace in the fridge’s loving embrace. If you don’t hear from me again, I’ve either passed out next to the frozen fish fingers or ascended to a higher plane of chilled existence.

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.”

Let’s talk about the big, festering elephant in the room: Multiple Sclerosis. Or, as I prefer to call it, the silent puppeteer of mental mayhem. For anyone not familiar — congratulations, enjoy your blissful ignorance. For those of us who are intimately acquainted, we know it doesn’t just nibble at your nervous system like a shy woodland creature. No — MS kicks down the door, flips your brain inside out, and installs a disco ball of chaos where your personality used to be.

I used to be fairly calm. Normal, even. Then MS came along like an uninvited houseguest who never leaves — and suddenly I’m starring in my own Jekyll and Hyde horror flick. No polite build-up. Just creeping dread followed by a full-throttle freak-out. I’m talking foaming at the mouth, incoherent screaming, full-blown berserker mode. Try hiding that from your partner. Try pretending it’s just “a bad day.”

It’s like watching yourself unravel while screaming internally, “WHAT THE HELL IS HAPPENING?!” And the more you try to stop it, the worse it gets. Panic mode? Engaged. Solutions? None. At some point, I ended up on the floor semi-conscious after headbutting a wall, hoping it would jolt my brain back to factory settings.

So now I live by one simple rule: avoid stress like it’s a plague-carrying rat. Because stress isn’t just bad for MS — it’s the bloody ignition key to the meltdown machine. Let’s not forget the heart attack. That little bonus prize from the MS gift basket. 60% heart function now, apparently. What a treat.

Oh, and my voice? Occasionally checks out completely. Just ups and leaves. One minute I’m fine, next minute I’m miming like a drunk Marcel Marceau. People don’t get it. They assume you’re just ignoring them, or being lazy. I once sent my mother a long, heartfelt email explaining it all. Her response? Silence. Well, no — before the silence she asked my partner if I “really” had MS. That was the final curtain on that relationship.

She died a year ago. I wasn’t invited to the funeral. Not told, not asked. Just gone. Eleven years of silence because everyone was “too busy with their lives,” and I was, frankly, the cuckoo in the nest. Never fit in with my birth mother’s life, nor my adopted mother’s. Just the family subplot no one talks about.

That said, meeting my half-siblings was a strange and wonderful thing. I’m sure they found it weird too. “Surprise, here’s your brother you never knew about, also adopted, and he comes with emotional baggage and inappropriate sarcasm.” Meeting my birth mother was like attending a surreal theatre performance. At the time, she was dating a bloke younger than me. Classy.

She lied about my father. Even got her sister involved. One day, she phoned me crying, saying my dad had died in a motorbike crash. I didn’t buy it. I could feel he was still alive — don’t ask me how. I just knew. I sat with Albertine and we asked the Universe for help (as you do when reality fails you), and lo and behold — we found him. In New Zealand, of all places. And guess what? I had a full sister, also adopted.

Turns out all the lies, secrets and cover-ups were just damage control for decisions made in the 1950s — that golden era of social shame, polished smiles, and secrets buried under six feet of denial.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

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

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.”

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.”

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.”

⤫ 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.”