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.

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.

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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

⚠️ 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.

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.