multiple sclerosis struggles

⚠️ 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.

Well, it's Wednesday. That sacred midweek slump where you're too far from last weekend to still care, and too close to next weekend to legally give up.

Today? We ventured out. Yes, out — into the feral wilds of a local market near where we used to live (back when I had fewer diagnoses and more hair).

Albertine chauffeured me like the dark queen she is, and I stared out the window like a faded Victorian child recovering from consumption. The fields were full of cows, sheep, and idiot drivers who'd traded brain cells for car roof boxes and screaming children.

And then — boom — the average speed cameras appeared. Those big yellow poles of despair. Sentinels of the apocalypse. Albertine had to dodge more bad drivers than Gandalf dodges Balrogs.

Gone are the days of jeans, leather jackets, dodgy boots and patchouli-soaked pheromones. Now it’s all people-movers packed tighter than Tory lies, roof racks piled like refugee carts, and dead-eyed dads named Dave.

We arrived. Market time. Indoor chaos. Got out of Mr Rusty (my noble van) and rolled the wheelchair into the sea of fluorescent lighting, discount socks, and the perfume of stale chips.

Fat Tony's stall? Glorious. Tony and Paul – sages of the street – held court like two greasy prophets. We talked life, death, and probably cheese graters. I was sipping juice like a royal goblin while Albertine suffered in solemn, saintly silence.

Then I rolled past the 3D print shop – a futuristic corner of the market that honestly makes NASA look like cavemen with Play-Doh.

And lo – a crystal stall! Witchy delights. Pagan bits. Pointy shiny things that allegedly absorb vibes (hopefully not my brain fog, but one can dream). Obviously, I bought some. Witchcraft's cheaper than the NHS.

Then met a biker. Simon. Old school. One of us. Had a proper chat about the 1970s, leather, death, and what’s left of life.

Brain fog still thick. Cognition feels like someone parked a fog machine inside my skull and left it running. Whole left side’s numb. NHS? Useless. "Come in sir, let's slice you open and shrug!" No thanks. If death is the cure, I’ll pass.

Spellchecker now malfunctioning. Cognitive warning sirens going off. Too many lunatic motorists today. Seems everyone's running from something, probably themselves.

Anyway — we survived. Just. Another victory for the broken and the damned. See you next Wednesday.

                                             !!DISCLAIMER !!

This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional - just writing my truth. Please don't take this as medical advice.

                          “The views in this post are based on my personal       
                         experience. I do not intend harm, only honesty.”   

                               “By ink and breath and sacred rage, I write.
                                      By storm and silence, I survive.”

                                    @goblinbloggeruk  -  sick@mylivinghell.co.uk

Well, it’s Sunday night. The fan’s finally given up its struggle, limping down to slow like it’s seen too much nonsense today. Outside, the air smells stormy clouds gathering like some cosmic joke about to unfold. Perfect weather to match the chaos inside my head.

Why am I staring at the same damn piece of paper? How many backups do I have? A ridiculous amount. Twice over, because apparently my brain is the gift that keeps on glitching. Cognitive fog? Oh, it’s not just fog, it’s a full-blown London pea soup, and it’s thickening.

Am I losing it? MS or some other unholy curse tangled deep inside me? Questioning sanity is a new hobby, right next to forgetting why I walked into the room or what day it is. At least when I screw up, I forget about it soon after silver lining or just a cruel joke?

I’ve got notes everywhere, scribbles, reminders, basically a paper trail that looks like a conspiracy theory board. Which, spoiler alert, leads perfectly into the next post a tin foil hat special. Prepare for some mind blowing madness. Or just madness. Either way, you might never come back to read what happens to this thoroughly fucked-up dude chasing answers nobody wants to give.

So, seriously does your MS come with its own brand of weirdness? I’m all ears (well, eyes). Need to swap war stories or just shout into the void together? Hit me at sick@mylivinghell.co.uk. I promise I’ll get back eventually probably after a nap or a freak-out session.

Meanwhile, I wait for the storm, my body aching like it’s been in a fight with life itself. No spoons left in the jar today.

Cheers to the chaos.

                     “The views in this post are based on my personal    
                         experience. I do not intend harm, only honesty.”   

                                  “By ink and breath and sacred rage, I write.
                                           By storm and silence, I survive.”

                               @goblinbloggeruk -  sick@mylivinghell.co.uk