chronic illness

⚠️ 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.

Understanding Emotional Outbursts (And Why You Just Screamed at a Toaster)

Emotional outbursts: those sudden surges of unfiltered feelings that explode like cheap fireworks—sometimes directed at loved ones, sometimes at inanimate kitchen appliances. Whether it's a full-on rage rant, a teary-eyed meltdown, or inexplicably laughing at a squirrel, outbursts leave us (and everyone nearby) reeling like a stunned pigeon in a wind tunnel.

But don’t panic—you're not broken. You're just… human. Unfortunately.

Causes of Emotional Outbursts (aka What the Hell Set Me Off?)

• Stress & Anxiety: Life piling up like dirty dishes? Congratulations, you're now a pressure cooker with a dodgy release valve. Outbursts often follow closely behind.

• Frustration: When reality doesn’t match expectations, something's gotta give. Usually your sanity.

• Unresolved Issues: Oh look, it’s childhood trauma popping in for a surprise visit like a drunk uncle at Christmas.

• Fatigue: Sleep? What’s that? When you’re running on fumes and two hobnobs, your emotional filter checks out early.

• Communication Barriers: Can’t explain what you're feeling? Your body might do it for you—very loudly, and in public.

Effects of Emotional Outbursts (Collateral Damage)

• On Relationships: Snapping at loved ones tends to strain things a bit. Shocking, I know.

• On Mental Health: Repeated explosions could be your brain’s desperate SOS signal. Anxiety, depression, or other delightful gremlins may be lurking beneath.

• On Personal Well-being: Guilt. Shame. That lovely emotional hangover where you replay everything at 3am. Cheers, brain.

Managing Emotional Outbursts (Or at Least Causing Fewer Casualties)

• Self-Awareness: Know your triggers. If Karen from accounts makes your eye twitch, maybe don’t sit next to her in meetings.

• Healthy Outlets: Smash clay, not crockery. Journal, jog, howl into a pillow. Art therapy is cheaper than bail money.

• Mindfulness & Relaxation Techniques: Yes, breathing slowly does work—even if you feel like a lemon doing it at first. Try deep breathing exercises or guided meditations to help ground yourself.

• Seeking Support: Talk to someone. Anyone. A friend, a therapist, your dog. Sometimes being heard is enough to defuse the ticking time-bomb.

Personal Anecdote

I remember a time when I lost it over a simple kitchen mishap. I was trying to toast bread, and the toaster decided to play hard to get. After a few failed attempts, I screamed at it as if it had personally offended me. It was a ridiculous moment, but it highlighted how stress from work and life had built up, leading to that outburst.

The Science Behind It

Emotional outbursts often stem from the brain's amygdala, which processes emotions and can trigger a fight-or-flight response. When overwhelmed, our rational thinking can take a backseat, leading to those explosive reactions. Understanding this can help us recognize that our brains are wired to react, but we can learn to manage those reactions.

The Importance of Forgiveness

After an outburst, it’s easy to spiral into guilt and shame. Practicing self-forgiveness is crucial. Acknowledge your feelings, reflect on what triggered the outburst, and remind yourself that everyone has moments of weakness. Consider writing a letter to yourself, expressing understanding and compassion.

Resources for Further Support

• Books: "The Dance of Anger" by Harriet Lerner, "Emotional Intelligence" by Daniel Goleman.
• Websites: Mental Health America, National Alliance on Mental Illness (NAMI).
• Hotlines: Local mental health hotlines can provide immediate support.

Conclusion: You’re Not a Monster, Just a Messy Human

Let’s face it, emotional outbursts are part of the ride especially when you’re juggling chronic illness, dodgy brain chemistry, or life in general. The trick isn’t pretending you don’t have them, but learning to handle them without setting fire to everything in a 10-metre radius.

So take a breath. Cut yourself some slack. Maybe apologize to the toaster. And remember, you’re not alone in this. Share your experiences, and let’s support each other in navigating the messy, beautiful chaos of being human.

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.

Vitamin D has always been the vitamin of “maybe helpful, probably harmless.” If you live in the UK and know rain better than sun, you’ve probably popped a tiny supplement every winter while half your bones creak. Recently, the D-Lay MS trial dropped. And what it suggests is: maybe we’ve been too timid.

303 people with Clinically Isolated Syndrome (CIS) who had low vitamin D were split into two groups. One got 100,000 IU vitamin D every two weeks for 2 years. The other got a placebo (because science is cruel). After 24 months:

• Those on vitamin D had a 34% lower chance of new lesions or relapses.
• Time to first new MRI change/relapse doubled (432 vs 224 days).
• MRI scans showed fewer abnormalities in the vitamin D group.
• Serious side effects? Pretty similar to placebo. Nothing obviously wild.

Sounds good. But: this was early MS / CIS. Might not help someone whose disease is long-standing or whose body is already ravaged. And 100,000 IU every two weeks is way above what the NHS currently recommends for supplementation. Also, still not tested as a replacement for disease-modifying therapy — more like a sidekick.

Mechanism of Action

Vitamin D is thought to influence immune function, potentially modulating the inflammatory processes that contribute to MS progression. This could explain why higher levels might be beneficial for those with CIS.

Current NHS Guidelines

The NHS currently recommends a daily intake of 10 micrograms (400 IU) of vitamin D for most adults, which is significantly lower than the doses used in the D-Lay trial. This discrepancy highlights the need for further discussion with healthcare providers.

Long-term Effects

While the trial showed promising short-term results, more research is needed to understand the long-term effects of high-dose vitamin D supplementation on MS progression and overall health.

Patient Experiences

Anecdotal evidence from patients who have tried high-dose vitamin D suggests varying experiences. Some report improvements in symptoms, while others see little change. Personal stories can provide valuable insights into the potential benefits and limitations of this approach.

Future Research Directions

Ongoing studies are exploring the role of vitamin D in MS and other neurological conditions. These future investigations may provide more definitive answers regarding optimal dosing and long-term safety.

Dietary Sources of Vitamin D

In addition to supplementation, dietary sources of vitamin D include fatty fish (like salmon and mackerel), fortified foods (such as cereals and dairy products), and egg yolks. Incorporating these foods can help boost vitamin D levels naturally.

Lifestyle Factors

Lifestyle factors, such as sun exposure and diet, significantly influence vitamin D levels. Engaging in outdoor activities during sunny months can help increase natural vitamin D synthesis in the skin.

Consultation with Specialists

It’s crucial to consult with specialists, such as neurologists or endocrinologists, for personalized advice on vitamin D supplementation and MS management. They can provide tailored recommendations based on individual health needs.

So here’s the “what you might do if you were scrappy and tired of waiting”:

• Ask your neurologist about testing your vitamin D levels, especially if they’re low.
• If you’re in early MS or CIS, and deficient, ask whether high-dose vitamin D (with proper monitoring) might be an option.
• Don’t assume that more is always better — risks still exist (hypercalcaemia, kidney issues, etc.).
• Keep using your DMTs and other treatments. This looks like a companion, not a cure.

Dark Sarcasm Moment: We’ve spent decades being told low vitamin D might increase MS risk, yet when trials run, “no effect.” Now suddenly, dosage + timing = possibly useful. Took long enough.

This revised summary provides a comprehensive overview of the D-Lay MS trial and its implications, while also offering practical advice and additional context for readers.

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.

Ah, Monday. Everything in my body decided to go berserk overnight. MS? Revving its engine like it’s auditioning for the grand tour. Neck bone growths pressing on nerves? Check. An X-ray from ten years ago says hi. Time to see the doctor, I suppose if I survive the existential dread of the waiting room.

Strangulation sensations, head blips, tongue spasms oh, and the sweet bonus of not being able to catch my breath. Honestly, my body’s doing the kind of mad shit that would make anyone else file a formal complaint. I pity the doctors and nurses who have to deal with me. Truly. But hey, life’s a circus.

White‑coat syndrome is my sidekick. I talk to medical staff like a squirrel on espresso: chaotic, twitchy, and unintentionally antagonistic. My solution: write everything down. Hand the chaos over in neat little bullets. Works great—until I forget, which is pretty much guaranteed, and then I’m a full-blown, stressed-out disaster. Doctors are busy, complicated cases suck, I get it.

I’ve tried it all. Meds? Side effects so bad my body staged a protest. Seven-day hospital admission? Almost happened, but I said “fuck it” and walked. Holistic methods, lifestyle overhaul, mind-body-soul cleanse—my own brand of chaos control. Fix? Plumbstick there isn’t one. Options? Sure. Natural? Works for me.

Present me? Ambivalent, tethered to this illness 24/7. Tinnitus now “harmonizes” with Blondie, which is absurdly funny if you squint. Yopi is decompressing, slowly realising this is a loving home and not just a mildly terrifying human experiment. Fingers tingle. Tips go numb. Neck frozen solid. Chair = coffin. No work today small mercy. Big Rusty, the van, needs welding later. Life continues its beautiful joke.

Sky’s stormy blue. Smell of dog treats inexplicably on me. Vitamins? Taken. Hydration? Achieved. Creativity? Maybe later images, poems, whatever chaos I can conjure.

No solutions. No neat endings. Just a mess of body, mind, and dark humour plopped straight onto the page. F00k it, this is 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.

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.

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