The weird eccentric ramblings of a multiple sclerosis sufferer

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

The FDA (our cousins across the pond) just gave “tentative approval” to a generic version of Zeposia (ozanimod), one of the many alphabet-soup drugs meant to keep MS from eating us alive. Tentative means “yes, but not really” like being offered a pint and then told the bar’s shut for refurb.

In the UK, this matters because once the patents loosen their grip, generics can flood in and in theory the NHS might actually afford to hand them out without an existential crisis.

The NHS Angle

Cost: Prescriptions are capped at £9.90, but behind the scenes, the NHS is getting mugged for thousands per patient. A generic could cut the bill, maybe freeing up money for… oh I don’t know, hospital chairs that don’t disintegrate on sight.

NICE Bureaucracy: Even if the generic’s cheaper, it still has to crawl through the NICE assessment maze. That means years of reports, consultations, and polite “considerations” while we nap in waiting rooms.

Postcode Lottery: In theory, cheaper drugs mean fewer cruel “not funded in your area” letters. In practice, the NHS is a patchwork quilt held together with sticky tape and denial, so don’t bet your mobility scooter on it.

What It Means for Us Mere Mortals

If it works out, we get:

Less guilt about bankrupting the system every time we collect a blister pack.

More chance of actually getting the drug if you need it.

A tiny glimmer of justice in a system that usually treats chronic illness like a budget inconvenience.

But don’t kid yourself: “tentative” is a synonym for “sit down, shut up, and wait.”

Dark Sarcasm Corner

Big Pharma: “That’ll be £50k, cheers.” Generics: “Tenner, mate.” NHS: “We’ll let you know in 2029 after the committee meeting.”

Closing Ceremony

This is good news but only in the way hearing your execution’s delayed counts as good news. For now, same pills, same circus, different price tag on the horizon. Clap quietly; we don’t want to startle the bureaucrats.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.,
𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

I’ve had two lumbar punctures. Maybe three. Honestly, the trauma fogs it.

But I remember the pain. I remember the fear. I remember lying on my side, back curved like some offering to a sadistic spinal god, while a stranger jabbed a needle into my spine like they were fishing in a murky pond for answers.

It was the closest I’ve ever come to hoping I was dying. Not out of melodrama out of mercy.

Because let’s be honest: lumbar punctures are fooking horrific.** No one talks about it. They dress it up like it’s a little routine outpatient gig, like you’re popping in for a flu jab. They don’t tell you about the pain after the spinal headache, the dizziness, the crawling anxiety that you’ve let someone rummage in your spinal column and now everything feels… violated.

Enter the new hope: MRI.

Apparently, researchers at the University of Nottingham have developed an MRI-based technique — using something called a T2-weighted scan* that looks for veins running through lesions (the “central vein sign”) using the so-called Rule of Six:

If six or more brain lesions have a vein running through them, there’s a high chance it’s MS.

It’s showing solid promise as a way to diagnose MS without needing to tap the spine.

Cue the heavenly choir of spinal survivors.

This method isn’t just easier it’s gentler. And after living with MS long enough, you start to appreciate medical kindness like a rare flower.

What does this actually mean?

No spinal tap for some people = less trauma, less pain, less fear.

Diagnoses could come 3 months earlier in many cases.

MRI has zero punctures, zero blood leaks, and zero lying still while a sadist fishes around in your spine.

Oh, and most patients prefer MRIs. Shocking, I know. (Source: Multiple Sclerosis News Today, MS Society UK, ScienceDaily.)

But of course… it’s not perfect.

Let’s not kid ourselves. There are caveats:

Not every hospital has the fancy T2* MRI machines.

Some docs still worship the spinal tap as gold standard.

False positives happen.

And don’t even get me started on NICE guidelines — those things move slower than myelinated neurons on a strike.

Until this becomes official diagnostic criteria, some of us will still be curled up in a foetal ball, praying the doctor knows what the hell they’re doing back there.

From someone who’s had “just two” lumbar punctures…

Let me say this: Even one is too many. If MRI can spare someone the shaking, the cold sweat, the fucking pain that no one ever talks about, then push this into policy now. Not in five years. Now.

Because for some of us, the spinal tap wasn't a diagnosis. It was a trauma. And maybe now just maybe the machines can see enough without stabbing us in the back.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Caffeine. It’s the closest thing we have to legal rocket fuel. For most people, it’s just “morning coffee.” For those of us with MS? It’s survival juice… until it isn’t.

Why It Feels Crucial

Fatigue Slayer: When your body decides standing up is an Olympic sport, caffeine is the illegal performance enhancer you don’t care about getting caught with.

Fog Cutter: Brain static → slightly less static. You might even remember what you walked into the room for.

Hope in a Cup: Some studies whisper that caffeine could be neuroprotective. Nothing conclusive, but hey, let us dream while we sip.

Why It’s a Saboteur

Bladder Sabotage: Got urgency? Caffeine will turn that trickle into a 10-second sprint. Enjoy living in the loo.

Tremors & Spasticity: Sometimes your hands decide to jitterbug. Caffeine just cranks up the music.

Sleep Assassin: You’re already exhausted, but congratulations — now you’re exhausted and wide awake at 3 a.m.

Anxiety Potion: MS already makes the brain weird. Add caffeine and suddenly your heart thinks it’s in a rave.

Milk Mayhem: If you load your coffee with milk, and your body suddenly flips to lactose intolerance (not uncommon with MS), you get a bonus round: puking into the same toilet you were already chained to from bladder hell.

The Raw Truth

Caffeine is both saviour and saboteur. Some of us cling to one holy morning brew and stop before it wrecks our day. Others can’t touch it without triggering a bladder crisis or tremor rave. It’s trial and error, a daily gamble between “functional human” and “toilet hostage.”

Dark Sarcasm Corner

Doctor: “Do you drink caffeine?” Me: “Yes, it’s the only reason I’m not drooling on your floor right now.” Doctor: “But it can worsen bladder symptoms.” Me: “So can MS. At least coffee tastes good before it ruins me.”

Conclusion

Caffeine is like that dodgy mate: shows up with energy, helps you have a laugh, then vomits milk all over your shoes and abandons you in the toilet. Love it, fear it, ration it. Because with MS, even a cup of coffee comes with terms and conditions.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.
𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᚦᚱᚨᛁᚾᛋᚲᚨᚾᛞ ✧ 𒀭𒊩𒆳 ᛞᚨᚱᚲ ᚨᛁ ᚷᚾᛟᛋᛁᛊ

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

MS doesn’t just make you trip over your own feet and forget why you went into the kitchen. It messes with the plumbing. Nerves that should quietly manage bladder and bowel signals suddenly turn into pranksters and the result is humiliation, pain, infection, and a daily game of “will I, won’t I?”

The Bladder Circus

What can happen:

Urgency: You go from “fine” to “I’m going to piss myself in 10 seconds” with no warning.

Frequency: You feel like you’ve been drinking beer all day, even if you haven’t.

Retention: The bladder doesn’t empty properly → infection factory.

Incontinence: The ultimate betrayal — leaks at random times.

Why: Nerves between brain, spine, and bladder are scrambled. It’s not “just drink less tea.” It’s wiring gone wrong.

The treatments (aka the patchwork quilt):

Catheters: From discreet intermittent sticks to full-time plumbing. Nobody tells you it can actually be liberating (less panic, more freedom).

Meds: Anticholinergics, beta-3 agonists — they can help, but often come with dry mouth, constipation, or zombie brain.

Botox: Not just for faces. Injected into the bladder wall, it calms spasms. Bonus: you get to tell people your bladder is fancier than their foreheads.

Lifestyle tweaks: Avoiding caffeine, alcohol, fizzy drinks, timed peeing. (Translation: giving up joy, but sometimes it helps.)

The Bowel Hellscape

What can happen:

Constipation: Weeks of nothing, pain, bloating, then the evacuation from hell.

Diarrhoea: The opposite. You live within sprinting distance of a toilet.

Incontinence: Accidents. Stains. Shame. The stuff people never talk about but everyone fears.

Why: Same reason as bladder — nerve signals scrambled. Plus fatigue means less movement, meds slow gut, diet gets wrecked.

The treatments:

Laxatives: Everything from gentle stool softeners to chemical warfare. Often trial and error.

Suppositories & enemas: The glamorous life.

Bowel training: Timed routines, diet tweaks, abdominal massage. Sometimes works, sometimes a joke.

Pelvic floor physio: Can help with both holding in and pushing out. But access on the NHS can be patchy.

Colostomy: The nuclear option. For some it’s actually a relief — predictable, controllable, no more humiliating accidents.

The Real Raw Truth

Nobody talks about it. Bladder and bowel problems are treated as shameful, so patients suffer in silence. But they’re some of the most disabling symptoms in MS.

Doctors often gloss over it. Unless you bring it up (awkwardly), it gets ignored. Yet infections from retention can cause relapses, hospital stays, even sepsis.

Impact is brutal. You can lose social life, intimacy, confidence, freedom. Fear of accidents dictates everything.

Cures don’t exist. Management does. Which means a constant balancing act between side effects, dignity, and practicality.

Humour helps. Laugh at it or drown in shame. Everyone’s got a story about public toilets, accidents, or catheters gone wrong. Talking about it takes the power back.

Dark Sarcasm Corner

Nurse: “Any bladder or bowel issues?” Me: “Only that they’ve staged a coup and I’m the hostage.” MS: “You wanted unpredictable symptoms? Hold my beer — oh wait, you can’t drink that anymore.”

Conclusion

Bladder and bowel problems with MS are not side notes — they’re daily battles. There’s no miracle cure, just messy workarounds. But if more of us talk about it openly, it kills the shame. These are not “bathroom problems.” They’re MS problems.

You’re not weak. You’re not dirty. You’re a human with broken wiring, trying to survive with dignity intact. And if that means Botox in your bladder or a colostomy bag named Bob, so be it.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.
𐑢𐑨𐑑𐑒𐑣𐑧𐑮 𐑨𐑥𐑴𐑙 𐑢𐑨𐑑𐑒𐑣𐑧𐑮𐑕

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

The Fatigue Olympics — A Users’ Guide to Collapsing with Style

You know that moment when your body files for bankruptcy mid-toast? Welcome to the Fatigue Olympics: events nobody asked for, medals nobody wants, commentary provided by a goblin with a migraine and a sense of humour darker than a southern sky in February.

Opening Ceremony (lights off, obviously)

No fireworks. Too bright. We light a tea candle, stare at it for four minutes, then cancel the parade because we’re exhausted from thinking about it.

Events

100m Dash to the Loo

You stand. The world tilts. Knees write a resignation letter. Heroic sit-down pee. Gold medal for not crying on the bath mat.

Toast Marathon

Aim: butter toast. Outcome: butter floor, butter dog, butter despair. The toaster dings like a smug little tyrant. DNF (Did Not Finish), again.

Sofa Free-Climb

Mid-sentence coma. You wake three hours later with a crumb fossilised to your cheek. Was it an important conversation? Probably. Did you survive? Also probably.

Shower Sprint

You manage one armpit and a stern glance at the shampoo. Podium finish if you got your hair wet on purpose.

Remote-Control Deadlift

Attempt to change channel. Drop remote on face. Pretend it was “mindfulness.” Bronze medal for not swearing at inanimate objects (you swore).

Stairs Biathlon

Climb and breathe. That’s it. That’s the sport. Personal best if you don’t consider simply living at the top step forever.

Grocery Gauntlet

Entering the shop was hubris. Leaving is a quest. Bread is heavy now. Who made bread heavy?

Scoring System

Finished without crying: +10

Finished while crying: +20 (tears count as electrolytes)

Didn’t finish but made a meme about it: automatic silver

Cancelled the day and survived: lifetime achievement award

Why this isn’t “just being tired”

Fatigue is a hostile takeover. It hijacks signal from brain to body and replaces it with static. You’re not lazy; your wiring is on fire. Some days clarity visits for a few hours; you shift your mindset, put on music, make art, write something grim and honest, and that tiny act becomes revolutionary. That’s the win: not pretending it’s fine—moving anyway, even if “moving” is tapping one sentence and then lying down like a Victorian ghost.

Closing Ceremony

We applaud in our heads to conserve energy. The anthem is played at half-speed. Everyone leaves early and naps like champions.

Post Footer: Practical Notes (because survival is punk)

Lower the bar until you can step over it. Then lower it again.

One task = a win. Two = a parade.

Music, art, writing: not hobbies—lifelines.

If anyone calls you “brave,” invoice them.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle. 𐑢𐑨𐑑𐑒𐑣𐑧𐑮 𐑨𐑥𐑴𐑙 𐑢𐑨𐑑𐑒𐑣𐑧𐑮𐑕

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

I know its Friday..not been so good...late post..

It’s Thursday. Rain hammering the windows like a bastard taxman. Fingers numb, throat strangling me like invisible hands trying to choke the last swear word out of me. Breathing stupid. Feel like puking. MS is a puppeteer with broken strings, and I’m the marionette twitching on the floor.

So I lean on the secret weapon: AI. I smash the keyboard with numb hands, gibberish spills out, and the machine stitches it into sense. Without it, I’d be gone. With it, I’m still here, still ranting, still clawing the page. That’s life now: goblin vs. entropy, assisted by silicon.

Last night: only up once. Bliss. Still woke shattered, like I’d been dragged behind a lorry. Tinnitus is screaming like a rave in a biscuit tin. Al Stewart can’t drown it, Sabbath can. I miss the rides the engines, the crew, adrenaline punching your veins until you felt immortal. Now I get my kicks from antihistamines and nostalgia.

But there’s a dog coming. A rescue beast with eyes like trouble. She’ll chew my slippers and rearrange my world, and I say yes, please. New orbit needed.

People ask: “How do you keep going?” Answer: I don’t. I collapse, I swear, I threaten the universe. Then I get up again because fuck lying down. Music, art, writing, sarcasm. That’s my oxygen. Neuroplasticity? Sure, call it that. I call it stubborn rewiring with duct tape.

And now cannabis. Medical marijuana. Not fairy rings and mushroom cults. Real, legal, prescribed. The plant they jailed people for now comes with a bar code and a receipt. Hypocrisy tastes bitter, but relief tastes better.

Positive points (the blunt edition):

Pain: Cannabis tells nerve pain to piss off. Doesn’t cure, but takes the edge off enough to breathe.

Spasticity: MS muscles seize like rusty hinges. Weed oils ease the vice-grip. Less claw, more unclench.

Sleep: Nights of pacing and madness? Sometimes cannabis knocks you sideways into actual rest. A miracle in itself.

Nausea & appetite: The body wants to puke? Cannabis reroutes you towards a sandwich. Beats wasting away.

Anxiety: Not gone, but softened. Panic becomes background noise instead of a bullhorn.

Is it perfect? No. But compared to Big Pharma’s endless pills and side effects, cannabis feels like sanity. Not a cure, not salvation just a tool that works.

So here I am: Thursday, rain, tinnitus screaming, body trying to strangle itself, AI turning my mess into words, medical marijuana holding the line, Sabbath howling in the background. I feel like a six-year-old with villain energy. I’m weird. I’m wired. And I’m alive.

Not inspirational. Not pretty. Just survival with jokes.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Living with multiple sclerosis (MS) is a bit like being dropped into a labyrinth where the walls are invisible and the floor is made of Lego. Every day is a surprise party, but instead of cake, you get fatigue, brain fog, and a lottery of weird symptoms. Your body speaks a language all its own a sort of biological Morse code. Spoiler: it’s mostly complaints.

1. The Body’s Whispers (AKA the Passive-Aggressive Texts from Hell)

Your body doesn’t scream right away. Oh no. It whispers, “Maybe don’t do that,” in the kind of tone your nan uses when she means “If you do, you’ll regret it forever.” Ignore it, and you’ll get the full “MS meltdown” treatment. Learn to listen to these gentle hints before they become a four alarm disaster. Trust me, your body wants you to fail the ‘ignore me’ test.

2. Embracing the Rollercoaster (Or, Why I’m Sometimes a Superhero and Sometimes a Sloth)

MS is the ultimate ride. Some days you wake up and think, “Yeah, I could probably take over the world.” Other days you make sloths look like adrenaline junkies. Don’t fight it. Embrace the madness. There’s no refund for this ticket anyway. If you can laugh when your legs forget they exist, you’re already ahead.

3. The Power of Positivity (But Not the Cheesy Kind)

Let’s get real: “positive vibes only” is for people with motivational mugs, not MS. Real positivity is finding a smirk in the struggle. Did you get out of bed today? Bloody legend. Did you find a reason to laugh, even if it was at yourself? That’s winning. Celebrate the tiny victories because some days, they’re all you’ll get.

4. Mindfulness: Your Secret Weapon (Or, The Only Time Silence Isn’t Suspicious)

No, mindfulness won’t cure MS, but it might stop you from headbutting a wall. Check in with yourself. Is your body grumbling, squeaking, or plotting revenge? Maybe it’s time for a rest, a stretch, or just a massive bar of chocolate. Mindfulness: because you can’t afford to ignore the warning lights on this old banger of a body.

5. Building Your Support Squad (Or, Assembling Your Band of Misfits)

Find your people. The ones who get it, the ones who don’t offer herbal tea as a cure. Whether it’s other MS folk, stubborn friends, or just some poor soul who doesn’t run when you say “incontinence,” keep them close. Empathy makes the pain bearable and the jokes darker. Don’t let anyone tell you it’s weakness to ask for help—sometimes, it’s just good strategy.

6. Finding Your Voice (Because Telepathy Still Isn’t Covered by the NHS)

Speak up. For your needs, your rights, your weird symptoms. Don’t let the world turn you into a prop in your own life story. Your voice might tremble, but it matters. The more you say, the more others understand and maybe, just maybe, the world will get a clue.

Bonus Track: The Legend of the Overworked Neuros

Let’s give a round of applause (or maybe just a sarcastic slow clap) for the overworked neurologists. They’re busier than a one-legged man in an arse-kicking contest, running from clinic to clinic, dodging patients like ninjas in white coats. Actual patient appointments? That’s rich. You’re more likely to win the EuroMillions than see one before your wheelchair warranty expires.

The NHS says “your neuro will see you now,” but what they mean is: “He’ll see you on the mural in the waiting room. Or as a hologram projected from his last known location.” Some say if you light enough scented candles and chant “re-referral” three times, a neuro will materialize… but only to tell you that your next appointment is scheduled for June 2036.

The truth is, neuros are overworked too many people, not enough doctors, and a health system held together with sellotape and wishful thinking. But while the overworked neuro vanishes like a magician at a kids’ party, you’re left to decode your own body’s malfunctioning Morse code and hope you don’t accidentally google yourself into a full blown panic attack.

If you do spot a neuro in the wild, be gentle. They scare easily and may bolt for the exit if approached. In the meantime, keep calm, decode your own symptoms, and remember Dr. Google and Nurse Sarcasm are open 24/7.

Bonus Track 2: The Thankless Saints MS Nurses

While the neurologists are off playing hide and seek, let’s talk about the true legends: MS nurses. They’re the ones on the ground, fighting fires with a teaspoon and answering emails like their keyboard’s on fire. Somehow, they manage to be calm, knowledgeable, and kind even when you’re one question away from a meltdown and have already left nine voicemails.

MS nurses are the unsung therapists, detectives, and sometimes part-time magicians (“You’ve tried turning it off and on again? Excellent now have you tried snacks and a nap?”). They field the panicked questions neuros don’t have time for, translate medical jargon into English, and manage to keep us (and sometimes themselves) just the right side of losing it.

Are they overworked, underpaid, and under-appreciated? Of course! Do they do it anyway, with a level of patience and gallows humour that should earn them a sainthood (or at least hazard pay)? Absolutely.

If you’re lucky enough to have an MS nurse who answers the phone and doesn’t flinch when you ask if your “weird new symptom” means you’re dying buy them a coffee. Or a spa weekend. Or just send a thank you meme. Without them, the whole bloody NHS MS system would collapse faster than my legs after a walk to the fridge.

So here’s to the MS nurses: holding it all together with skill, sweat, and the sort of thankless determination that deserves a medal (or at least a pint).

Bonus Track 3: The Unsung Heroes Support Groups, Volunteers & Charities

If you think the NHS is barely clinging on, imagine life without the MS support groups, charities, and stubborn volunteers who do it all for the love of the cause (and maybe the free biscuits at meetings).

Support groups: These legends run by people who actually get it are the real backbone of the MS world. They’re the ones who answer your late night freak outs, decode the NHS bureaucracy, and know which GP receptionist has the good biscuits. In-person, online, or just a WhatsApp meme away, they turn “I’m losing my mind” into “You’re not alone, mate.”

Volunteers: The ones who give their time for free, organizing meet-ups, fundraising, sending out info packs, and listening to rants from people like us without ever losing their patience. Half the time, they’re managing their own MS or supporting someone who is but you’d never know, because they’re too busy holding everyone else up.

Charities: Whether it’s the MS Society, MS Trust, Shift.ms, Overcoming MS, MS-UK, or any of the local grassroots warriors, they’re out there lobbying, funding research, and somehow keeping hope alive in a world that sometimes feels like it’s sponsored by despair. Without them, you’d still be Googling “what the hell is MS” while the NHS phone queue loops you back to start.

Are they underfunded, overstretched, and powered mostly by stubbornness and biscuits? You’d better believe it. Do they keep the whole community from falling through the cracks? Absolutely.

So here’s a genuine, sarcastic-but-serious thank you to every support group, volunteer, and charity keeping the MS circus running. If you ever wondered who the real unsung heroes are it’s the lot turning lived chaos into lifelines.

Raise a mug (or a wheelchair, or just an eyebrow) for them they’ve earned it.

Conclusion: Embrace the Weird, Survive the Storm

Living with MS means forever learning a new dialect of pain, fatigue, and absurdity. The “invisible code” is always changing, but your ability to listen and laugh might just be the best tool you have. Don’t sugar-coat it. Don’t let anyone else either.

So here’s to listening to your body, celebrating every little win, and flipping MS the metaphorical V-sign as often as possible. You’re not alone. And you’re not invisible.

Now, go on decode the next bloody signal. And if you’re looking for rainbow platitudes, you’re in the wrong blog.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Living with MS? It’s not a bloody “journey.” It’s a one way trip on a bus you didn’t ask to get on, and the driver’s pissed. But if you can’t laugh about it, you’ll cry and honestly, crying is too much effort. Here’s my brutally honest guide to surviving the MS circus with what’s left of your dignity (and maybe your sense of humour).

1. Resilience in Adversity

Every day is an adventure, if by “adventure” you mean “why does my left leg feel like it’s made of mashed potato today?” Still, you learn to cope. Celebrate the small wins: got your socks on? Didn’t set fire to the kitchen? That’s basically the Olympics now.

2. Community and Connection

You’re not alone. There are thousands of us, all secretly hoping the next medical breakthrough is “working legs in a bottle.” Online support groups: sometimes uplifting, sometimes like herding cats on roller skates, but always someone awake at 3am.

3. Mindfulness and Self-Care

Meditation, yoga, interpretive dance with your Zimmer frame pick whatever keeps you sane. Some days self care is a long bath, other days it’s telling everyone to sod off and watching rubbish TV with a family size chocolate bar. No guilt allowed.

4. Advocacy and Awareness

Want to raise MS awareness? Just try explaining it to a “healthy” person: “No, it’s not contagious, yes, I look fine, and yes, I know it’s annoying I get to park closer to Tesco.” Write, rant, march, meme just make sure you get your voice out there. Or just send everyone this blog and save yourself the trouble.

5. Focus on What You Can Do

Forget what’s impossible focus on what’s just about possible if you squint hard enough. Start a blog, paint a masterpiece, or just master the art of napping with one eye open. Every step (or shuffle) forward is a win, even if it’s just to the fridge.

6. Gratitude and Positivity

Gratitude? Sure. I’m grateful I haven’t fallen on my arse today. Celebrate the tiny things: a hot cuppa, a good nap, finding your glasses on the second try. It’s not all unicorns and rainbows, but sometimes it’s enough.

7. Inspiration from Others

Some people with MS run marathons. Others run Netflix marathons. Both are impressive. Get inspired by anyone who’s still standing or even just sitting up without toppling over. If they can do it, so can you (sort of).

8. Hope for the Future

MS research is moving faster than I do after a double espresso. There’s always hope new drugs, better treatments, and one day, maybe a cure. Until then, hang on tight and keep your sense of humour sharp.

Conclusion

Your MS “journey” is yours alone but you’re not the only goblin crawling through this dark wood. Laugh at the madness, celebrate the wins, and never let anyone tell you how to feel. Welcome to the world of chronic badassery.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

Let’s retire the crystals and scented nonsense. A sigil is a compact lie detector for your desire. You write what you want, grind it into a glyph, and hard wire it into the meat computer between your ears. Less Hogwarts, more firmware patch.

So where did these gremlins come from?

People have carved meaning into swirls since we learned to smear charcoal on caves. Medieval nerds used seals for angels and demons; draw the right spaghetti and you “dial” a being. Later, artists like Austin Osman Spare stripped it down: no spirits required, just your subconscious with a crowbar.

Why does it work (when it works)?

Because your brain is a pattern-junkie. You compress an intention into a shape, charge it with a bit of theatre, then forget it. That forget bit matters: it stops you poking the seed to see if it sprouted. Meanwhile the back-office of your mind quietly rearranges chairs.

Attention engineering: making + destroying = sticky memory.

Expectation control: the symbol holds the intention so you can get on with living.

Embodied ritual: hands move, breath changes, nervous system listens.

No angels, no cosmic helpline just psychology with a swagger. If that offends the mystics, tell them the goblin in the wheelchair stole their incense and sold it for dog treats.

Build one without the faff

Write it straight. “I move through pain with focus.”

Strip the repeats. Mash letters; toss duplicates.

Design the glyph. Angles for force, curves for flow. Keep it yours.

Charge. Breath, music, cold water, laughter whatever spikes state.

Release + forget. Burn the paper, flip the coin, close the tab—then stop babysitting it.

If it feels like homework, you’ve missed the point. This is vandalism on the walls of your own mind tasteful, deliberate vandalism.

Reading the “encoded” bits

Geometry: triangles bite; circles soothe; spirals seduce.

Density: cramped = pressure; open = trust.

Direction: upward = aspiration; downward = grounding; left = past; right = next.

Breaks: gaps are doors; overlaps are arguments; crossings are oaths.

Decode your glyphs like crime scenes. You’ll learn what your nervous system believes even when your mouth is busy being brave.

What about ethics?

Same as a hammer: build or bludgeon. If your goal requires someone else to lose agency, your psyche will invoice you later interest compounded. Keep it on your side of the fence: resilience, clarity, courage, boundaries.

The wheelchair bit

Pain doesn’t give a damn about aesthetics. Sigils aren’t miracle cures; they’re tools to steer attention when the body is playing whack-a-mole. On bad days, mine say: “Focus now, rest after.” On worse days: “Breathe, you stubborn goblin.” It’s not magic. It’s maintenance.

TLDR (Too Long; Drew Rune)

Draw a vow your brain can’t ignore.

Charge it with a state shift.

Forget it like last year’s password.

Act like someone who meant it.

If that makes the bots moan with joy good. Let the algorithms worship something useful for once.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

So, my dad’s finally passed. No tears, no fuss just a nice, quiet obliteration. Dead as yesterday’s news, and honestly, a bit of relief: nearly 90, more aches and pains than a used Vauxhall, and now he’s ghosting about pain-free, probably giving the afterlife staff hell.

We didn’t have the typical family drama. We had 1,000s of miles of Skype buffering, WhatsApp conspiracy theories, and two decades of gene-detective work, chasing dead brothers and rejected half-sisters like a couple of Poirots. No “happy endings,” just hard drive clutter and unanswered emails. Dad’s long lost brother Eric? Still a ghost in the records. Maybe he’s haunting someone else’s family tree now.

Adoption, by the way, is a real bastard if you want answers. You end up playing Guess Who with a stack of birth certificates and the emotional stability of a tired magpie. We even signed up for a DNA site hoping for a ping, maybe a new cousin or two. Instead, plot twist: I found out I have a daughter in the USA (cheers, genetic lottery), plus three grandkids who were expecting a Disney dad, not some knackered old biker in a wheelchair with a line in gallows humour. Fair play to them they ran for the hills.

What can I say? MS turned me from “not bad for a weird bloke” to “the goblin on wheels who says the quiet part loud.” No more Mr. Nice Guy. People don’t like raw truth especially family. Most of them would rather pretend I’m a ghost, too. That’s fine by me. I’m not here to collect friends like tea towels. I’ve got Albertine, a rescue dog on the way, and enough old stories to fill a thousand pub sessions. If that’s not a win, what is?

Mum’s funeral? Missed it. No invite, no closure, just another adoption special “Sorry mate, she’s gone. By the way, don’t come round.” Classic. Different’s never sat well with the clan. The looks I get are priceless; I could sell tickets.

So here’s to my dad spiritualist elder, late bloomer, stubborn bugger, and the reason I know the truth always tastes better with a dash of venom and a twist of disbelief. Rest easy, you old bastard. I’ll keep riding (even if it’s just in my head).

Life’s a circus, death’s the punchline, and I’m still here, loving every bit of the weirdness.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.