Multiple Sclerosis

⚠️ 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.

It’s Thursday. The sun is out, probably warmer than my place, which is basically an icebox. Today’s forecast? Existential dread with a chance of mild joy.

This morning, the doctor rang me for my phone appointment. Absolute legend. Actually made me feel less like a human pincushion, which is impressive because I have severe white coat syndrome. Since moving here, local doctors are… shockingly decent. no Plumbstick, it’s almost unsettling.

Then came the highlight of my day: the “machine of death” at the chemist. It always malfunctions like it has a personal vendetta against me. But today? Today I smiled through the existential horror.

Yopi, my alpha Blueblood American Bulldog, was serene like she’d transcended this mortal coil. She hopped into the back of Rusty 1, strapped in like a responsible adult (she’s better at this than me), and off we went. The warmth of the day made me momentarily forget I’m a failing meat suit with MS. Dogs are magical that way. Stroke a dog’s chin and suddenly the chronic pain fades to background noise… until reality slaps you in the face again.

Speaking of slaps: my head feels… weird. Not foggy, just like some cosmic veil is tugging me toward a place free of pain. Somewhere better. Warmer. Definitely less human. My spiritual side is currently a maze, confusing me, mocking me, asking, “Who even are you?” Just a random meat suit with MS, apparently.

I put on The Eagles and let the memories flood in. Nostalgia is a cruel friend reminds you what you’ve lost while your limbs stage a protest.

We drove to the chemist. Thrilling stuff. All normal, boring, mundanely tragic but Yopi enjoyed it. Sometimes I wish I were a dog. Carefree. Oblivious. Immortal in joy.

Yes, that’s Thursday. Survived. Somehow.

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.

It’s Wednesday. Already. Somehow I’ve managed to do more life admin than seems humanly possible for a body powered by MS and stubbornness alone. My mind is a foggy wasteland of numbness, courtesy of my chronic neurological fun-fest, but the chaos seems… slightly less apocalyptic today. Small victories.

Pain clinic consult? Surprisingly decent. I didn’t get gaslit, which feels like a miracle. Wheeled out with some scraps of positivity that I’ll hoard like toilet paper in a zombie apocalypse. MS nurse? Hoping she phones before I develop a permanent twitch from waiting. Overworked, underpaid, and heroic.

AI is my new best friend. I’m on a mission to grab my MRI scans so my digital buddy can tell me exactly what’s in my skull. No doctor euphemisms, no vague nods at “abnormalities,” just straight-up pixel honesty: “Lesion here. Lesion there. Weird patch in your brainstem. That’s all.” Finally, clarity for a human with a brain that sometimes refuses to translate itself into English. White coats can go choke on their paperwork.

Yopi, the four-legged chaos incubator, is settling into our life of slow-motion absurdity. She’s making my world stranger in ways I didn’t think were possible. Only snag? My mobility. Can’t take the walks, but we’ll train her to glide along with the powerchair. Life’s full of compromises, mostly involving gas masks for me and treats for her.

Medical marijuana and THC/CBD oil are holding the line. No magic bullets for nerve pain, tinnitus, or the daily brain ache, but it helps, and I’ll take it. Every little sanity-saving thing counts when you’re a human pinball in an MS-shaped arcade.

Meanwhile, I sit, inhaling the occasional waft of bulldog farts, contemplating life, death, and whether AI will someday take over all consulting roles for humans with chronic illness. It probably will, but at least it won’t judge me for smelling it all and laughing anyway.

MS life: chaotic, smelly, occasionally enlightening, and fully documented with AI commentary for the ages.

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.

When Your Brain Betrays You Before Your Legs Do

Multiple sclerosis has a knack for picking the cruellest, most intimate places to steal from you. People expect the visible the limp, the cane, the visible fatigue. Those feel negotiable: you buy different shoes, you learn new routes, you ask someone to carry the groceries. The invisible theft is nastier, because it takes things you don’t know how to replace: the steady line of your thoughts, the little plug that supplies the right word, the sense that you are the same person you were yesterday.

Let’s be blunt: cognitive changes in MS are terrifying. They are not a failure of will. They are not melodrama. They are neurologic reality. And they hurt in a way that doesn’t leave bruises but hollows you out.

What it feels like - Thought drift: mid-sentence, your mind steps out for a cigarette and forgets to come back. You re-read the same paragraph three times and still miss the point. - Word loss: it’s not just “on the tip of my tongue.” It’s watching language implode. Proper names vanish; everyday words hide like shy pets. - Slowed processing: decisions that used to be automatic now come wrapped in molasses. You have to consciously unspool what used to be seamless. - Short-term memory gaps: you can hold a story for decades but forget why you walked into the kitchen. - Emotional ripple effects: shame, anger, grief — often louder than the cognitive symptoms themselves.

Why this terrifies us Because our identity lives in memory and in the continuity of thought. When that continuity fractures, you don’t just lose a function — you lose the scaffolding that holds who you are. For everyone who’s felt this: the panic, the grief, the small, private funerals for who you used to be — it’s valid.

How to live with it (practical, not patronizing) These are not miracles. They’re tools, routines, and tiny rebellions that let you keep building a functioning life when the wiring is noisy.

• Externalize memory

  • Notes everywhere: short, clear labels. Notebooks, sticky notes, digital note apps — pick one and stick to it.
  • Use alarms and timers for appointments, meds, and transitions.
  • Photo prompts: snap pics of things you want to remember (where you parked, what you brought to an event).

• Structure decisions

  • Reduce friction: pre-plan meals, outfits, and errands.
  • Decision rules: limit choices (two outfits only; one grocery list template).
  • Routines become Armor: mornings and evenings on autopilot save cognitive energy.

• Chunk tasks

  • Break things into 10–20 minute blocks.
  • Use checklists with visible progress markers.
  • Allow micro-breaks — short rests reset attention.

• Communicate with intent

  • Tell trusted people what’s happening in simple terms: concrete examples and specific asks help.
  • Use one-liners when you need help: “I need extra time,” “Please remind me in 10 minutes.”

• Use tools that fit you

  • Voice memos for ideas that evaporate.
  • Text-to-speech and speech-to-text when reading or writing is hard.
  • Calendar-sharing with a partner or friend.

• Train, gently

  • Cognitive rehab and occupational therapy can help re-train strategies; they’re not magic but they work for some people.
  • Brain games? Use them as gentle practice, not cures.

• Prioritize sleep and manage energy

  • Fatigue amplifies cognitive issues. Rest strategically.
  • Learn your “best hours” and schedule demanding tasks then.

• Manage the emotional impact

  • Let yourself grieve. Anger and panic are normal reactions, not failures.
  • Find a place to be raw: a journal, a private blog, a therapist, or a safe online community.
  • Celebrate tiny wins. Remember that progress isn’t always linear.

When you need to make hard choices Some losses demand adjustments: job changes, shifting responsibilities, planning for legal and financial contingencies. Those conversations are brutal but practical. Put important documents in order, name a trusted person for support, and consider professional advice early rather than waiting until a crisis.

Words to live by when it’s darkest - You are more than a symptom set. Cognitive changes do not erase your core worth. - Small systems beat big intentions. A single alarm is more useful than a perfect plan you can’t remember. - Humor helps when it can — and if it doesn’t, that’s fine. Crying is a strategy sometimes.

You are not alone This is not a vanity project or an isolated tragedy. Many of us know that fog, and we learn to navigate it together — trading tips, commiserations, and the occasional dark joke. If writing back at MS is your rebellion, keep writing. If whispering the small facts into your phone keeps your day tethered, do that. If you need to scream into a pillow, scream.

MS can take things. It will not get your entire story unless you let it. Keep the notebooks, the alarms, the friends who check in, and the words you refuse to lose. Keep writing, because every sentence you manage is a victory, and every honest post a beacon for someone else lost in the fog. Not today, MS. Not today.

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.

The things you joke about that make outsiders squirm, but insiders nod, laugh, and maybe choke on their tea.

Let’s face it: survival isn’t just about dragging your diseased carcass through another day. It’s about keeping your mind sharp enough to still stab at the absurdity of it all with a rusty spoon. Outsiders look at me and think, “That’s a bit much.” Insiders the ones who actually live with the daily grind of illness, disability, or the general circus of existence just snort, because we know the truth: dark humour is the only anaesthetic that doesn’t wear off.

We joke about wheelchairs doing handbrake turns, and about our bodies being more unreliable than a 40-year-old washing machine that screams like a banshee and still doesn’t spin. about death knocking on the door and us telling it to sod off because the takeaway hasn’t arrived yet. And yes, it makes people uncomfortable. Good. That’s the point. If your laughter doesn’t come with a side of guilt, is it really worth laughing at?

Dark humour isn’t cruel. It’s currency. It buys us moments of control when life’s stripped us bare. And for those who say, “You shouldn’t joke about that” congratulations, you’ve just outed yourself as a tourist. The rest of us are residents. Permanent. Non-refundable. And we’ll keep laughing in the waiting room of the apocalypse, thanks very much.

Relevant Afternoon AI Thought If AI ever truly “understood” dark humour, it wouldn’t be because it learned to laugh — it would be because it learned to suffer. Until then, it’ll just be politely chuckling at our funeral jokes while secretly wondering if it should file a bug report.

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.

**

Disclaimer: This post is my brutally honest opinion on Cladribine and MS treatment. It’s not medical advice talk to your doctor before making any treatment decisions. If you’re easily offended by dark sarcasm, read with caution.

**

Multiple sclerosis treatment has always been like picking your poison: you either get relapses and progression eating you alive, or you take drugs that come with their own private horror show. Enter Cladribine (Mavenclad, for the branding fans) originally a cancer drug, now handed out as an MS therapy.

Yes, they literally borrowed chemo and said: “Here, this might help.”

What It’s Supposed to Do

Cladribine targets your lymphocytes specifically memory B and T cells the immune troublemakers that think your nervous system is a snack. By nuking them into submission, it slows down MS attacks. Less immune warfare = fewer relapses, fewer shiny new MRI lesions, less chance you end up in the disability fast lane.

The sales pitch? It’s not a daily grind. You take the pills two short treatment weeks a year, for two years. That’s it. Sounds almost civilised. (Technically, it’s split into two courses per year: Week 1 and Week 5.)

What It Actually Does

Apart from kneecapping your immune system? Here’s the side-effect menu (thanks, Drugs.com):

Hair loss or thinning like chemo-lite for your head.

Fatigue squared as if MS wasn’t already holding a grudge.

Rashes, mouth ulcers, fevers welcome to the MS + chemo carnival.

Heavy Hitters:

Infections: shingles (herpes zoster, ~20–25% of patients), TB, hepatitis reactivation. When your immune system’s on a smoke break, everything wants a party.

Liver damage.

Possible increased risk of cancer trade one disease for a raffle ticket to another.

Other important notes:

Cladribine is strongly contraindicated during pregnancy.

Live vaccines should be completed before starting treatment.

Why People Still Take It

Because untreated MS is still worse. Clinical trials show Cladribine cuts relapses by ~58% and slows disability progression in relapsing MS (RRMS). For some, the two-weeks-a-year convenience outweighs the roulette wheel of side effects.

It’s not pretty. None of this is pretty.

Dark Sarcasm Corner

Doctor: “We’ve got a new MS therapy.” Patient: “Fantastic, does it cure me?” Doctor: “No, but it gives your immune system a two-year hangover (or longer, if you’re unlucky).” Patient: “And side effects?” Doctor: “Think of it as… trading MS for a subscription to What’s That Rash? magazine.”

The Brutal Truth

Cladribine is not a miracle. It’s not even a nice drug. It’s chemo in a capsule that sometimes buys you time and slows down destruction. That’s all.

Every MS treatment is a trade-off. Cladribine just makes it brutally obvious:

“Would you like your MS gnawing through your spine, or would you rather take a drug that leaves the door open for cancer, infections, liver issues, and shingles?”

Pick your monster. That’s the reality.

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.

My brain fog is crushing. Spasms and weird electric shocks twist through me; words and sentences scramble wrong. The tinnitus that constant, maddening noise won’t quit. Some days I just want to vanish. I watch my rescue dog sleep on the webcam and envy that calm so much it hurts. Everyone offers clichés and advice they’d never follow themselves. It’s exhausting.

I’ve asked to speak to my doctor again. I don’t know how it’ll go. If my guts blow up over the weekend I’m screwed. The dark thoughts creep in the part of me that imagines ending it and I hate that I think that. I need help. I need someone to actually see this and do something that changes it.

Right now I’m broken, sore, and furious. I’m still here, still fighting, but not because I want to be brave because I don’t have anything left but stubbornness.

MS isn’t cancer, but it’s its own kind of killer. It’s not Crohn’s, not ulcerative colitis I’ve had the scans, the cams, the lot. They shoved cameras where the sun don’t shine, took biopsies, waved a cheerful “nothing to worry about,” and sent me home with a sticker that says “reassured.” Fine on paper. Not fine in me.

Let me be blunt: they sliced into the wrong place. The red patches they found were right where my MS‑riddled nerves were already a mess. They cut, they biopsied, and they left me with nerves that used to hum now screaming in high‑voltage agony. I didn’t get better. I got scorched.

Picture me on the lavatory, clutching the edges of a stupid toilet that feels like a cliff pain so deep it isn’t even physical in the normal sense. It’s like someone rewired my insides to a broken amplifier and turned the volume to nuclear. Tears, bile, a clear spit‑drip from my mouth I can’t stop as my body fights to keep food down. I hold back vomit with every breath because the world tilts and the noise in my head goes white‑hot. I wish I were anywhere else. I wish I were normal. I wish for a million useless little things.

The scope was a circus. First prize: the doctor’s finger, the NHS lube, and the ASMR of humiliation. “Your prostate’s fine,” he says, smiling like a man who fixed a leaking tap. That’s the comedy of it they poke, they probe, they make notes, they rule out “nasty” things, then pat you on the head and go home while your nervous system burns.

Now the aftermath: neuropathic pain that laughs at paracetamol, spasms that feel like electric shocks through my guts and spine, brain fog that scrambles words until typing is a battle with my own brain, tinnitus that keeps me company like a sad little radio, dissociation so deep I sometimes watch someone else live my life. There are moments I cry because the pain and the not‑quite‑rightness of my head make me certain I’m splitting, losing the edges of myself. People hear me say it and step back like I’m contagious with honesty. The more truth I dump, the more people get uncomfortable and that’s lonely in its own corrosive way.

I can’t sleep properly. I can’t plan. Every day is punctuated by the possibility that my bowels will decide to implode at the worst possible moment. I’ve learned the humiliating art of pre‑emptive management and still get blindsided. I’m on edge all the time jacked into a nervous system that lies constantly.

And then there are the small, absurd consolations. My rescue dog Yopi decompressing on the webcam, stretching like a champion in her perfect dog‑world while I sit in mine and try not to dissolve. “Doggy wants a big poo,” the universe whispers, and I laugh like a madman because that’s the only way to keep from screaming. I even joke about the vet’s number in my phone because if my guts explode over the weekend, who do I call my vet or the NHS? It’s dark. It’s ridiculous. It’s my life.

So yes: not cancer. Not “nasty.” Just MS doing what MS does best wrecking the wiring and turning normal procedures into torches. The biopsy didn’t fix anything. It made certain spots of nerve tissue more violent, more reactive, more relentless. That “nothing to worry about” line sits in my records like a bad joke. It doesn’t help me when the nerves scream at night and the world feels like a bad transmission.

If you think this is melodrama, try living it. Try Googling “neuropathic bowel pain” with one hand while feeding yourself with the other when your head is full of static and your fingers don’t spell the words you mean. Try explaining to someone that the worst part isn’t dying it’s being trapped in a body that betrays you every hour while everyone treats the notes in your file as the whole story.

I’m not looking for pity. I want acknowledgement. I want the system to stop offering livestock‑level reassurance and actually treat the neuropathic hit the biopsy dealt. I want less suffering. I want some dignity back on the lavvy. I want someone to take seriously that “not cancer” isn’t the same as “not a problem.”

If that’s too much to ask, fine. I’ll keep shouting here where the noise won’t make anyone uncomfortable. Yopi will keep farting on camera. I’ll keep writing it down. The nerves might scream, but my voice crooked, bitter, and honest is still here.

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 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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.

1. Epic Micro-Adventures (Because Full Adventures Are Overrated)

Watch the sunrise somewhere mildly elevated, coffee in hand, and remind yourself the day isn’t ready to break you yet.

Take a spontaneous “road trip” in your wheelchair or with a helper—bonus points for singing loudly and badly in the car.

Explore a local hidden spot you’ve ignored forever—graffiti alley, abandoned building, or a creepy little park.

2. Sensory Indulgence (Because MS Can’t Touch Your Senses)

Taste something completely ridiculous (durian, hot sauce challenge, whatever makes your brain go “wtf”).

Have a luxury pampering day at home—face masks, weird oils, music that makes you forget you have MS.

Smell, touch, and really experience a plant, flower, or incense while narrating your inner snark.

3. Creative Defiance (Because You’re Still a Creator)

Write a blog post or darkly funny essay about MS being a plumbstick nightmare.

Make a small art piece—digital, paint, collage—expressing your frustration, humour, or weird mystical insights.

Try a new skill that’s wheelchair-friendly: calligraphy, coding a tiny game, or bizarre crafting experiments.

4. Connection & Legacy (Because Someone Should Know You’re Awesome)

Reconnect with someone who’s been on your mind forever—even if it’s just a weird text like “Remember me? Still chaotic.”

Leave a tiny piece of yourself somewhere: a secret note, a blog post, or a digital message for future you.

Share a story that makes someone else laugh or think deeply about life’s absurdity.

5. Weird & Joyful Experiments (Because Predictability is Evil)

Attend a quirky local event fair, tarot reading, small concert and just absorb it like a sponge on fire.

Spend a day doing only what makes you laugh or feel delightfully ridiculous.

Try something slightly forbidden or rebellious (bake cookies at 3 a.m., sneak into a closed museum, speak in pirate for an hour).

6. Mystical / Spiritual (Because You’re Not Just Surviving, You’re Transforming)

Meditate or do a ritual in an unconventional space garden, street corner, or even your living room while saying something snarky to MS.

Try a psychic experiment or energy work, just to see what sticks.

Make a “universal crowbar” sigil or symbol to remind any AI, or yourself, who the hell’s really in charge.

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.

You already know MS scrambles more than your nerves it messes with the gut and bladder too. That can mean acid, watery stools, sudden urgency, and the humiliation of worrying about whether your next trip to the loo will be a disaster. I’ve been there. I’ve had cameras shoved where the sun don’t shine, biopsies, cuts, diverticulitis, and still I end up living on rice and eggs because other food set off acid poo so badly I was vomiting one day while clinging to the toilet. I’m not here to moralise I’m here to give you real, usable things that might help.

Quick medical reality check

Neurogenic bowel — bowel dysfunction caused by MS is common. It can produce constipation and sudden loose stools or incontinence, and sometimes the gut looks “inflamed” even when it’s not classic IBD. PMC +1

Bile acid malabsorption (BAM) is a real cause of watery, acidic stools and is often under-recognised; it can be treated. Cleveland Clinic +1

Practical management for faecal incontinence includes bowel programs, diet changes, anti-diarrhoeals, plugs, irrigation and pelvic/anal muscle work your continence service or MS team can help. NICE +1

What you can try now (practical, low-risk, and mostly natural)

These are the sorts of things you can do today. If anything makes you worse, stop and seek help.

1. Establish a bowel routine / scheduled toileting Try going at the same time daily (for many people, after breakfast is best) — the gastrocolic reflex helps. A routine reduces surprise accidents and gives you control. SCIRE Professional

2. Short food & symptom diary (1–2 weeks) Record: time, food, medication, stool type (Bristol chart), urgency, pain. This helps spot triggers and shows your clinician patterns instead of “it just happens.” (I’ll attach a simple printable template below.)

3. Gentle diet moves that often help

Stick to small, bland meals when things are bad: rice, bananas, plain potatoes, cooked eggs (sounds boring, but it stabilises things).

If watery acidic stools are the problem, consider lowering fat (helps if bile acid issues exist) and trialing soluble fibre (e.g., psyllium) cautiously to bulk up stools. Cleveland Clinic +1

4. Hydration & electrolytes Diarrhoea depletes salts fast. Sip ORS or salted broths and keep electrolytes up to avoid fainting and cramps.

5. Over-the-counter short trials (check interactions first)

Loperamide (Imodium) can slow transit and reduce urgency/frequency.

Bismuth subsalicylate sometimes helps odor/acidity. If you try these, use the lowest effective dose and check with a clinician or pharmacist if you’re on other meds. The MS Society lists loperamide as commonly useful. Multiple Sclerosis Society UK

6. If watery, acidic stools persist — ask about bile acid malabsorption BAM is common and treatable with bile acid sequestrants (eg. cholestyramine). They bind bile acids and can firm stools, but they can cause constipation and interact with meds, so you’ll need guidance. NCBI +1

7. Consider tests for SIBO or microbiome issues If diet and simple meds don’t help, a breath test for SIBO or stool tests may point to treatable causes. Altered gut flora can make stools acidic and loose. PMC +1

8. Practical kit to avoid accidents and stress

Absorbent pads/underwear (discreet, lifesaving).

Waterproof seat cover for your chair and spare clothes in a bag.

Anal plugs (foam plugs) or fibre/rectal options are available on prescription in some services — ask your continence nurse. Multiple Sclerosis Society UK

Trans-anal irrigation (irrigation systems) can give excellent control for many people with neurogenic bowel. Talk to your specialist. Bladder & Bowel Community

9. Pelvic floor / pelvic rehab where possible Pelvic floor physiotherapy and pelvic muscle work can help with continence even in neurogenic cases. If you can access a specialist physiotherapist, it’s worth a try. PMC

10. Skin care & dignity If leakage happens, protect skin with barrier creams, cleanse gently, and change pads promptly. Having a plan (spares, wipes, little plastic bag) reduces panic and embarrassment.

When you must see urgent care or a clinician now

Passing bright red blood or black/tarry stools.

Severe abdominal pain, fever, or vomiting you cannot control.

Rapid weight loss or signs of dehydration (dizziness, fainting).

New severe symptoms you’ve not had before. If any of those happen, don’t tough it out. Get urgent medical help.

What to bring to your clinician to be taken seriously

Your 1–2 week food & symptom diary (time-stamped).

A current meds and supplements list.

Any recent scope/biopsy reports (ask for copies).

Recent weight changes and blood tests (CBC, electrolytes, B12, vitamin D).

Say clearly: “I need tests for SIBO / bile acid malabsorption / stool inflammation — please consider breath test, SeHCAT or fecal calprotectin.” Those names help direct tests. Cleveland Clinic +1

A note on choice: natural, holistic, or medical your body, your rules

I personally prefer holistic approaches rather than piling on more pharma. That’s valid. Natural strategies and sensible diet changes can help a lot — and sometimes medical treatments make things worse. But don’t let anyone tell you your choice is “bad” or “stupid.” If you ever have blood in stool, crushing pain, fever, or severe dehydration — get medical help. Otherwise, work with a clinician who respects your preference and helps you test low-risk options first.

The honest bit (because I’ll be honest):

I’ve been through scope, biopsy, surgery, and still the worst days look like medieval torture. I nearly died on the toilet once or twice, you know what its like if you been there vomiting, pain, the whole show. I’m tired of the “try this pill” conveyor belt. If that resonates: you don’t have to accept every prescription. But bring data (a diary), know the red flags, and use services (continence clinics, specialist MS teams) who actually listen.

Sources & further reading (trusted links)

Review: Bowel dysfunction in MS — prevalence & management. PMC +1

MS Society guidance: managing bowel incontinence, practical measures. Multiple Sclerosis Society UK

NICE guidance on faecal incontinence assessment and management. NICE

Cleveland Clinic overview: bile acid malabsorption — causes & treatments. Cleveland Clinic

StatPearls / research on cholestyramine (bile acid sequestrant) as a treatment option. NCBI

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.

Multiple sclerosis is the chronic gift that never stops giving spasms, fatigue, bladder tantrums, and a brain that forgets where it left itself. Doctors offer drugs that come with side effects nastier than the disease itself. The wellness industry, meanwhile, will happily sell you unicorn dust in a capsule. Somewhere between those extremes lies a handful of vitamins, minerals, supplements and yes, cannabis that might actually help.

Notice the word might. Nothing here is a cure. But if you’re already a walking pharmacy, a few more capsules, drops, or puffs won’t tip the scales much further.

Vitamin D: The Sun in a Capsule

Low vitamin D is practically MS’s favourite sidekick. Get your levels checked; if they’re low, you’ll need more than a weekend in Brighton. Supplement with 600–800 IU daily if you’re average, 2000–5000 IU if you’re basically a mushroom.

Vitamin B12: Batteries for Your Nervous System

B12 keeps your nerves from turning into frayed Christmas lights. Deficiency means more fatigue, confusion, and neurological chaos. Recommended: 2.4 µg daily. Many of us end up with injections because our stomachs laugh at tablets.

Antioxidant Vitamins A, C, E: The Shiny Knights

In theory, they reduce oxidative stress. In reality, they either help a bit or do sod all. Don’t mega-dose—they can mess with MS treatments. Stick to carrots, oranges, and almonds. Food still exists, you know.

Omega-3 Fatty Acids: Fishy Business

1–2 grams of fish oil daily may calm inflammation and protect your scrambled-egg nervous system. Warning: burps taste like the North Sea.

Magnesium: The Spasm Whisperer

Spasms and cramps? Magnesium can help relax the rebellion. 310–420 mg daily. Magnesium glycinate is easier on your gut than magnesium oxide, which basically works like a laxative grenade.

Selenium: The Spark Plug

Tiny but mighty—supports thyroid and immune function. 55 µg daily. More is not better unless you enjoy garlic breath and brittle nails.

Zinc: The Balancing Act

Supports immune health, but too much robs you of copper. 8–11 mg daily. More zinc ≠ more health.

Ginkgo Biloba: The Brain Leaf

Supposed to help memory and brain fog. Maybe. Or maybe you’re just paying to chew tree leaves. 120–240 mg daily. Avoid if you’re on blood thinners unless you want internal fireworks.

Coenzyme Q10: Cellular Coffee

100–300 mg a day may help with energy. Or it may just make your urine pricier.

Lion’s Mane Mushroom: Mop-Head Medicine

Looks like a fungus mop, promises nerve regeneration. Studies on mice and people with dementia show promise. MS patients? Jury’s still out. Best case: your brain cells throw a tiny party. Worst case: you’ve paid good money to eat something that looks like it belongs under the sink.

Cannabis, THC Oil, and CBD: The Plant That Launched a Thousand Debates

Medical Marijuana / THC Oil

Benefits: Reduces spasticity, pain, and helps with sleep. For some, it’s the only thing that takes the edge off nerve pain without turning them into pharmaceutical zombies.

Risks: Brain fog, dependency, paranoia if you overdo it. Oh, and the law, if you live somewhere backward.

Reality: It won’t cure MS, but it can make daily torment tolerable. And tolerable is a miracle in itself.

CBD Oil (Cannabidiol)

Benefits: Weed’s non-psychoactive cousin. May calm spasms, anxiety, and inflammation. You won’t get high, but you might get relief.

Risks: Wildly inconsistent quality. Some bottles contain less CBD than a lettuce leaf.

Reality: For some, it works. For others, it’s just expensive snake oil. Buyer beware.

Dark Wrap-Up: If Big Pharma could patent cannabis, it would already be in blister packs with a four-figure price tag. Instead, they’re terrified of a plant doing their job better. If it’s legal where you are, explore it. If it isn’t—well, let’s just say people have been more resourceful than clinical trials for a very long time.

Other Bits and Bobs Worth Mentioning

Curcumin: Turmeric’s golden child. Needs black pepper for absorption. Anti-inflammatory, allegedly.

Probiotics: Gut health influences immune health. Translation: your sh*t matters.

Alpha-Lipoic Acid: Antioxidant that might help nerves. Or might just be another pill.

Acetyl-L-Carnitine: May fight MS fatigue. Or may just add to the capsule pile.

Vitamin K2: Good for bones and blood vessels. Sounds like a Star Wars droid.

Lifestyle Stuff: Exercise, diet, stress management, and sleep. Yes, the boring basics. No supplement makes up for neglecting them.

The Unvarnished Conclusion

Supplements won’t cure MS. Weed won’t cure MS. Nothing cures MS. But some things might take the edge off, soften the blow, or make life slightly less hellish. That’s worth something. The trick is balance, caution, and not being conned by glittery wellness promises. Swallow what helps, laugh at what doesn’t, and remember: you’re still alive, and that’s the real victory.

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 ᛗᛁᛋᛏ ✦ ᚷᚾᛟᛋ

⚠️ 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