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⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction this may be a confusing read. some AI help with written content

So a very good afternoon to fellow humanoids, NHI and all readers of this blog, a big welcome to you all, as we know the heat dial for the UK is being turned up allegedly next week to eye watering temps, I will be giving a full report on my new mobility scooter as well ..Still please remember to hydrate and stay safe...

The Heatwave is Coming – And It’s Not Here to Make Friends

Summer’s here, and with it, the sun’s annual reminder that it’s still the main character in this dystopian climate sequel. For most people, a heatwave is just an excuse to complain about the weather. For those of us with MS or chronic illnesses? It’s a full-blown survival challenge. So, let’s talk about why your body is basically a faulty thermos—and how to stop it from turning you into a human prune.

1. Understanding the Risks: Your Body vs. The Sun (Spoiler: You’re the Underdog)

Heatwaves aren’t just about the temperature rising—they’re about your body’s ability to not rise to the occasion. And if you have MS or a chronic illness, your internal thermostat is already on strike.

MS: Your immune system’s already throwing a tantrum. Add heat, and suddenly you’re at higher risk of heatstroke, dehydration, and electrolyte imbalances. (Fun fact: Your body’s idea of “cooling down” might just be collapsing dramatically.) Chronic Illness: Diabetes, heart disease, or kidney issues? Your immune system’s already working overtime. Heat just adds insult to injury—literally. Medication Side Effects: Some meds are like that one friend who always leaves you stranded. They’ll happily dehydrate you or mess with your electrolytes while you’re just trying to survive the day.

2. Why Hydration is King (And You’re a Peasant in Its Court)

Your mission, should you choose to accept it: Replace the fluids you’re losing faster than your will to live in this heat.

Slower Sweat Production: MS and chronic illnesses often mean your body’s cooling system is… lazy. Less sweat = more risk of dehydration. (Congrats, you’re basically a cactus with worse coping mechanisms.) Medication Side Effects: Some meds are thirsty little gremlins, siphoning off your fluids like it’s their job. Mobility: Heat + MS = fatigue that hits harder than your aunt’s passive-aggressive texts. Staying hydrated keeps you moving (or at least upright). Fever: MS and infections? Your immune system’s overreaction is the equivalent of bringing a flamethrower to a candlelight vigil. Extra stress = extra trouble.

3. Heat 101: What You Actually Need to Know

The Danger Zone: For MS folks, 102°F (39°C) isn’t just uncomfortable—it’s a red flag waving in your face. Your body’s basically screaming, “ABORT MISSION.” Pre-emptive Hydration: Don’t wait until you’re thirsty. By then, your body’s already sent three strongly worded emails to your brain. Electrolytes: Water’s great, but sweat’s sneaky—it takes sodium, potassium, and magnesium with it. Skip the electrolytes, and your muscles might stage a mutiny. Sip, Don’t Chug: Guzzling water like it’s the last drop on Earth? Congrats, you’ve just earned a one-way ticket to Nausea Town. Small, frequent sips are your new best friend.

4. Practical Tips: How to Outsmart the Sun

Check the Weather: Use apps, alerts, or a Ouija board—whatever it takes to stay ahead of the heat. Stay Cool: Even if you feel fine, your body’s probably lying. Find the AC, a fan, or a shady spot and claim it as your kingdom. Snack on Salt: Salty foods help you retain water. (Finally, an excuse to eat all the crisps.) Monitor Blood Sugar: Diabetics, this is your reminder that heat and blood sugar have a toxic relationship. Keep an eye on it. Listen to Your Body: Dizzy? Lightheaded? That’s not your body being dramatic—it’s begging for water. Give it what it wants. Avoid Strenuous Activity: Now’s not the time to prove you’re “still capable.” The heat doesn’t care about your ego.

5. Tools of the Trade (Because You’re a Warrior, Not a Martyr)

Hydration Reminder App: Set hourly alerts. Your brain’s already forgetful; don’t let dehydration make it worse. Symptom Tracker: Log your symptoms like you’re documenting evidence for a court case. (Spoiler: The defendant is the heat, and it’s guilty.) Electrolyte Calculator: Because guessing is for people who enjoy hospital visits.

6. The Bottom Line: Hydrate or… Well, You Know

Staying safe in the heat isn’t just about hiding in the shade. It’s about outsmarting your own body’s betrayal. So drink up, stay cool, and remember: The sun may be a tyrant, but you’re the rebel with a water bottle.

Final Thought

If you’ve ever passed out from heat exhaustion, you’ll know—your body doesn’t do subtle. Treat it like the dramatic queen it is, and maybe, just maybe, you’ll make it through summer unscathed. And remember If you have MS and you’re not peeing clear, you’re either dehydrated or dead. No in-between." "Heatwave forecast: 100°F. My MS forecast: ‘Lol, good luck.’ Hydrate like it’s your job." "Chronic illness + summer = A horror movie where the villain is the sun.

Wishing everyone peace, healing, love, and light no matter who you are or where you’re from."

Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

@goblinbloggeruk - sick@mylivinghell.co.uk 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.

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.

Ah, summer. Sun, ice cream, holidays… unless you’ve got multiple sclerosis. Then it’s basically the devil turning the thermostat up just to watch you squirm.

Welcome to Uhthoff’s phenomenon — or as I call it, “boiling alive in your own nervous system.”

What the Hell Is It?

Uhthoff’s phenomenon is when heat makes your MS symptoms worse. Not permanently, just temporarily. But temporary doesn’t mean pleasant — it means your body throws a tantrum until you cool the hell down.

Why? Because MS already stripped the insulation (myelin) off your nerves. Heat makes that damage even more obvious. It’s like taking a half-broken wire and then running extra current through it — sparks, short circuits, total chaos.

Triggers: The Everyday Tortures

Hot weather → 25°C feels like the Sahara.

Exercise → five minutes of effort and I’m a puddle.

Hot showers or baths → who knew basic hygiene could become extreme sport?

Fever → as if being sick wasn’t enough.

Sitting in a stuffy room → congratulations, you just bought a ticket to hell.

What It Feels Like

Pick your poison:

Blurred vision — like someone smeared Vaseline over your eyes.

Weakness — your legs forget they’re supposed to be legs.

Balance — wobbly as a drunk pigeon on roller skates.

Fatigue — next-level exhaustion, like gravity tripled overnight.

Brain fog — thoughts move slower than dial-up internet.

All your regular MS crap, amped up by heat.

The (Small) Mercy

The only good news? It’s temporary. Once you cool down, things usually settle back to “normal” (whatever your personal version of normal is). You’re not getting worse long-term — you’re just being tortured in the moment. Lucky you.

Coping (aka Not Melting to Death)

Stay hydrated (yes, I know, bladder hell — but dehydration makes it worse).

Fans, cold packs, cool showers.

Avoid heat like it’s an ex who still owes you money.

Build your life around shade and air-con if you can.

Basically: treat yourself like a vampire — avoid the sun, keep cool, drink fluids, and hope the day doesn’t cook you alive.

Why Write This?

Because no one tells you about Uhthoff’s until you’re the one keeling over in the heat. Doctors might brush it off like, “Oh, just avoid hot weather.” Yeah, thanks genius — let me just move to the Arctic.

The reality is: this is part of the MS package deal. It’s crap, but it’s survivable. And if nothing else, talking about it means the rest of us don’t feel like we’re losing the plot when our bodies shut down on sunny days.

So next time you see me looking like a melted candle in a conservatory, know this: it’s not laziness, it’s not in my head — it’s just Uhthoff’s. And it can piss right off.

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