disability blog

⚠️ 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

Seven Days of Weirdness, Two Neurologists and a Scooter of Death

Good afternoon, fellow humanoids... and any NHI who happen to be lurking in the background.

I trust everyone has survived another trip around the Sun.

My week?

Imagine a frog in a blender running on Mark IV speed.

That's pretty much where my brain has been for the last seven days.

Everything has been spinning. My head hasn't caught up with my body, my arms and legs have been buzzing like faulty electrical wiring, and that horrible neurological static has been humming away in the background. If you know the feeling... then you know.

Welcome to another perfectly ordinary week with progressive MS.

Last Sunday I had my appointment with my brand-new consultant neurologist at the new hospital.

The outcome?

Another MRI.

This time with contrast.

That should be... interesting.

Meanwhile my original neurologist has also been back in touch, and, as I suspected, he has pretty much confirmed what I already believed.

So now I somehow have two neurologists at two different hospitals looking at the same increasingly broken human being.

It's becoming less like healthcare and more like an episode of the twilight zone written by funky wordbender.

Let's just hope the two of them compare notes before I become the neurological equivalent of Wimbledon.

One neurologist has already said I have severe autonomic dysfunction.

He also believes I'm suffering from paroxysmal symptoms.

Those words actually explain quite a lot.

Now the trick is finding something that helps without making everything else considerably worse.

Speaking of which...

four-wheeled Scooter of Death

My brand-new four-wheeled Scooter of Death finally arrived.

It looks brilliant.

Unfortunately it can't legally venture onto the road until the DVLA paperwork comes back.

So there it sits.

Brand new.

Charged.

Ready.

Mocking me.

Once I'm finally allowed out, I'll have roughly a thirty-mile range, proper brakes, decent hill climbing and, hopefully, fewer moments where gravity tries to remind me who's boss.

Considering the eye-watering APR attached to the finance agreement, I'd quite like it to make tea as well.

Medication is another battlefield.

I've been taking magnesium at night because it seems to help my spasms and sleep.

Personally, it works well enough that I'm sticking with it.

Years ago I was prescribed Baclofen.

Never again.

It absolutely wrecked my stomach and bowel health.

Constipation.

Digestive problems.

The whole miserable package.

I explained all of this to the neurologist.

He listened...

...or at least his ears were pointing in my direction.

His eyes, however, had already glazed over somewhere around the second sentence.

You know that look.

The one that says,

"Yes... yes... now stop bringing lived experience into my textbook."

To be fair, I wouldn't call it outright gaslighting.

But there was definitely a faint aroma drifting in from the North Sea.

One thing I've learned over the years is this:

Gut health matters. Bowel health matters.

Gut health matters. Bowel health matters. A lot.

There's little point taking medication that eases one symptom while turning your digestive system into reinforced concrete.

These days I eat prunes regularly.

They're hardly glamorous.

No one's ever looked heroic while eating a bowl of prunes.

But they help me.

Hydration.

Fibre.

Regularity.

The glamorous life of chronic illness.

As always, this is simply what works for me.

Please don't copy anything blindly.

Research.

Talk to qualified professionals.

Make informed decisions.

Everyone's body is different.

All I know is this...

I'd rather eat prunes than spend four days negotiating with my own backside.

As if all that wasn't enough...

My computer decided this week was also an excellent time to throw a mechanical tantrum.

So...

New computer arghhhhhhhhhhhhhh.

a new computer with windows 11 now Linux.

Specifically Zorin Pro.

Overall?

Absolutely brilliant.

Cleaner.

Faster.

Less bloated than Windows.

I'm genuinely impressed.

That said...

My keyboard occasionally develops the personality of an angry badger and the mouse seems convinced it's an abstract artist.

So there are still a few teething problems.

The old mini PC isn't going to the recycling center though.

That'll become the Windows 10 machine.

Every household needs one sacrificial computer for doing all the stupid jobs you'd rather not risk your main machine with.

So that's been my week.

Seven solid days of neurological weirdness.

Hospital appointments.

MRIs.

Medical politics.

New hardware.

New software.

And enough bureaucracy to power the British Empire for another century.

Still...

We keep rolling.

Sometimes literally.

Sometimes only just.

Wherever you are, whatever you're facing...

I genuinely wish you peace, healing, love and light.

The forecast says next Friday could reach thirty degrees here in the UK.

Please drink plenty of water.

Look after yourselves.

Hydrate.

And don't underestimate your gut.

It spends every day looking after you.

The least we can do is return the favor.

Until next time...

Stay sarcastic.

Stay stubborn.

And remember—

If life insists on throwing you into the blender...

At least make sure someone forgets to put the lid on.

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.)

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.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

And a very good afternoon to all my fellow humanoids and NHI readers. Oh indeed yes. and welcome to my blog on this overcast afternoon. Well, to be honest, it's been quite a strange few days. So, I bet you're all wanting to hear what happened with the doctor's phone call. Yes, well I shall explain it to you now and I think you might be slightly surprised.

You haven't been registered with neurology for over five years

So, apparently, when I spoke to the doctor, the doctor was very concerned indeed. When I told him I hadn't seen a neurologist for over five years, he then informed me that I didn't have a neurologist. I said to him, "What do you mean?" He said, "Well, it seems as though you just don't have a neurologist." I said, "Well, I have an MS nurse." He said, "Yes, you have an MS nurse, but you do not have a neurologist." And this has been the problem. So, I haven't had a neurologist for over five years, and the thing is, nobody has told me. So now, the cue for the Neurology Department at my local hospital is over a year.

Worsening symptoms

My neurological emergency was before Christmas and it is getting severely worse. Yes, the doctor is listening to me, but the MS nurse apparently has been gaslighting me for what seems to be five years according to the doctor. And I would suppose that's why in five years I've never had an appointment with a neurologist even though I've asked for one. So it seems somewhere along the line they've taken me off their books. How about that and never even bothered to inform me?

The DR sorts it out !

So now I'm having to get my doctor to sort all this mess out. So it seems that someone has been gaslighting me and it seems I've been taken off the neurology team's records at the hospital. Which is rather alarming because over the past five years I have had several major attacks that have caused the ambulance to be called and severe heart issues etc etc. I don't want to go into all that at this time but you can see where I'm coming from. I know what the problem is with me but they will not acknowledge it. They won't even speak to me. And the worst thing is I know why this has happened and I know why it is happening.

I pissed my neurologist off being a lifestyle biker.

Obviously, I must have pissed off my neurologist, what, five, six, seven years ago, just before COVID. The thing was I've got very long hair. I've got a very long beard and I'm an ex what you call lifestyle Biker one of the ones that you wouldn't want to take home to your mother Long hair, you know the sort the ones that are true fun that don't cause harm to anybody There are lovable big teddy bear type people So you get it, I wear old leathers and old jeans and when I went to see my neurologist all those years ago I was in my bike club gear and I had an 1100 Yamaha dragster and he did not like that and he did not like me and he took an instant dislike to me or so it seemed. But ever since that event, I used to see him at an outreach center, but he refused to go to the outreach center, and I refused to go to the main hospital, which was a long way off. And I couldn't get there because of my multiple sclerosis, funnily enough, So, I was supposed to go to the main hospital. And after that event, I hadn't heard hair no hide of that neurologist since. So I think he took me off the books on that very day and he never told me. because every time I phoned up the MS nurse for help, she never has referred me to the neurologist or to speak to the neurologist. It's like I was being gas-lighed and I never had an appointment with Progressive MS.

Medical marijuana and a biker lol

And another thing he didn't like was I'm in a wheelchair. And because I'm in a wheelchair and smoke medical cannabis, And I also refused to take all the drugs they offered me due to all the horrendous side effects that I'd suffered many years earlier. he didn't like that either. So there we go. It's a case of I didn't fit his paradigm and his paradigm was not going to shift for me. So hopefully he'll retire soon. He basically said that because I was in a wheelchair, he wasn't going to give me any of the nice new drugs, You know get out the wheelchair. I'll give you all the shiny nice new drugs He said because I refused to get out of the wheelchair And refused to go on that paradigm He didn't like that at all..

I must be a complete moron, people can't understand what I'm saying.

So there I was telling him my balance is completely shot. I Go over I can't use sticks. I'm out of breath because I've well he won't listen to me He's just interested in pumping me full of drugs and get me out of the wheelchair. I could not believe that it really did my head in well anyway, I am and unfortunately have severe reactions to practically all of the big pharma medical drugs and That's a shame

Medical marijuana, my life's saver.

So for over 20 years, I have been smoking marijuana and for four of those years I have been smoking medical marijuana and that is the only thing that has helped me along with the THC CBD oil with my MS, my spasms, my spasticity, the pain and quite a lot of the other things that happen as well. So yeah, you know, there is seemingly, I couldn't take their big drugs, they didn't like me, so there we go. So you tell me what you think, the guy obviously didn't like me, so you know, that's life. I remember sitting there asking him and I told him, I said, "Look, I smoked marijuana." And if I get busted by the police, would you back me for smoking the marijuana? And he did not like that whatsoever. It really did his head in. Well that was what, that was probably eight odd years ago. So you can imagine the hell I've been going through. And now I'm coming closer toward the end of all of this and we will see what the outcome will be in the next few weeks hopefully.

What I get from all of this.

If you are like me and you are different, or you are weird, or you're into something, or you dress differently, or you think differently, we all think differently and we're all different. Now, I think no two people are the same. And what I get from all of this, I was plainly not liked for the person who I was. I was a victim. He obviously didn't like the look of me, he didn't like me totally and it really did show. So yeah, I always say never judge the book by its cover, but what you find these days is everybody judges the book by the cover, which I think is blatantly unfair in this today's society.

Three-wheeled trolley of death!

Well, I've greased all the bearings, I've tightened all the nuts, and it seems to be going quite well. I've also solved the grip problem as well by getting some grip tape put on the wheels, and hopefully that will help it with the grip issue that it does have. I'm also carrying around a pump and some liquid to put in the tire just in case I get another flat tire as well. Hopefully soon the new safety additions to my mobility scooter will arrive. I will be challenging viper storm to a race lol Yes, it will look a bit yellow or greener. I've got some see me tape because it's what we need to do really to be seen and to be safe because if you can't be seen and those mobility scooters are rather sort of small, aren't they?

bigger and better scooters

I don't know why they can't build bigger mobility scooters with a bigger engine, maybe a really small three-wheeled Robin Reliant with an electric engine in might do the trick, something that wouldn't do over say 30 or 40 miles an hour. That would be awesome, something really cheap but I don't think about that do they? If they did I reckon they could come up with some great ideas but unfortunately it's all about governments and rules and regulations isn't it? So we can be waiting for years to get a decent scooter that can do what we really want.

arghhh shredddder and chainsaw hell

Still, on a lighter note, all the garden has been done. We had a friend come over and help us with the shredding and doing a bit of chain sawing and all the work's been done and everything is looking glorious in the garden. Unfortunately, I will not be able to benefit from the garden due to my autonomic dysfunction and the histamine intolerance that I have, which is pretty brutal, at the moment and in the height of the summer is even more brutal.

Still wishing everybody peace healing, love and light, no matter who, what, and wherever you are, on this planet, that planet, this realm, that realm, or wherever, have the most wonderful of weeks ahead.

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.

Here’s the thing they don’t tell you when you first hear the words multiple sclerosis. You don’t just get MS. You get a whole carnival of imitators, tag-alongs, and evil twins that either look like MS, act like MS, or make MS worse.

Doctors call them “related conditions.” I call them the bastard cousins of MS.

The Lookalikes

MS is a great pretender. It shares symptoms with loads of other conditions, which means many of us start on a misdiagnosis rollercoaster. You might’ve heard of:

Neuromyelitis Optica (NMO): Like MS, but meaner to the optic nerves and spinal cord.

MOG-antibody disease: Same symptoms, different culprit.

Transverse Myelitis: Attacks the spinal cord — paralysis, pain, bladder hell. Sounds familiar, right?

ADEM (Acute Disseminated Encephalomyelitis): Long name, short fuse usually hits kids, but looks a lot like MS on scans.

Doctors use fancy words like “differential diagnosis.” Translation: “We don’t bloody know yet, but it might be one of these.”

The Tag-Alongs

Even once you’ve got the official MS stamp, the fun doesn’t stop. Other conditions love to hitch a ride:

Depression & anxiety: Not just because life’s hard, but because MS literally messes with the brain.

Chronic pain disorders: Neuropathic pain, fibromyalgia… like the universe thought one wasn’t enough.

Autoimmune pile-up: Lupus, thyroid disease, diabetes — the immune system goes rogue in more ways than one.

Basically, your body joins a union of diseases and forgets to tell you.

The Quiet Killers

This is the bit nobody talks about enough. People with MS don’t usually die from MS itself. It’s the sneaky add-ons that do the damage:

Infections (pneumonia, UTIs that turn nasty)

Heart disease (made worse by being less mobile)

Blood clots, cancers, you name it

It’s like MS weakens the castle walls and the other invaders just stroll right in.

Why This Matters

Because when you’re told you’ve “just got MS,” it’s a lie of omission. MS is a syndrome, a spectrum, a spider’s web of conditions.

And if you know that, you can push back. You can say to your doctor:

“Are you sure this isn’t NMO?”

“Could this be something else?”

“What else should we be watching for?”

Knowledge isn’t a cure. But it’s armour.

Final Word

MS is the headline, but the fine print is where the bastards hide. Don’t let them gaslight you into thinking your illness is simple. It’s not. It’s layered, it’s messy, and sometimes it’s a trickster wearing another mask.

I live with that knowledge every day. And I’d rather face the whole ugly truth than be fobbed off with fairy-tale simplifications.

Because in the end? It’s not “just MS.” It’s never just anything.

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 help.

Imagine, if you will, that Multiple Sclerosis wasn’t a neurological disease. No. Let’s say instead it was a car, a British car. From the 1970s. Built by British Leyland. Already, you should be hearing the distant sound of doom.

We're not talking E-Type Jaguars or lovingly restored Triumphs here. No. MS is the Austin Princess. A car so catastrophically cursed it should come with a priest, not a warranty. A car that had style, yes—if by style you mean beige vinyl, flammable wiring, and the turning radius of a small aircraft carrier.

Much like MS, it shows up when you least expect it. You’re cruising along the M-road of life, wind in your hair, dreams in the boot, and then—bang. Gearbox gone. Foot won’t respond. Vision doubles. You veer left without meaning to. And suddenly, you're parked on the hard shoulder of your own nervous system, smoke pouring from somewhere expensive.

The garage (aka Neurology Dept.) says, “We’re not exactly sure what’s wrong. But here’s a new fluid. Try it for six months.” Great. Like pouring Redex into a petrol tank that’s already on fire.

And just when you think it can’t get worse, the electrics fail. Again. The horn blasts randomly when you're trying to stay silent. The indicators blink out Morse code for “You're screwed, mate.” And you? You're still trying to drive this bastard machine down the A-road of everyday life while the engine stalls mid-sentence, mid-step, mid-shag.

You try to keep it together. Duct tape your face. WD-40 your joints. But every fix is temporary. Every workaround has a workaround. And the passenger door won’t open unless it’s raining and you swear in three languages.

Meanwhile, you’re now the sort of car people stare at in car parks and say, “How is that thing still going?”

But you keep going. Of course you do. Because scrap's not an option. You’ve got Albertine in the passenger seat chain-smoking roll-ups and telling you, “I told you not to buy British.” And the cat's asleep on the dashboard. And you’ve got your own strange dignity—a rusted war machine with knackered brakes and a boot full of sarcasm.

Yes, MS is a British Leyland car. And I am the bastard behind the wheel.

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

It’s Sunday afternoon. The pain in my left side is throwing a rave. Not the dreaded MS hug (thank Gordon), but the nerves have clearly mutinied. Pain troops storming in like I’m Normandy. Still, I haven’t surrendered. Yet.

Ever had a headache that doesn’t hurt but is still there? I have. It's like an existential parasite lodged in my brain—just... there. Lurking. Mocking. My eyes? Burning. My energy? Sucked out by some invisible psychic Dyson.

Yes, I used AI to assist — what of it? MS has chewed through my brain like a zombie buffet. Severe cognitive dysfunction. Brain fog. Memory loss. And the pièce de résistance? The spellchecker begging for a raise every time I type.

My bowels are revolting (in both senses). But I won’t go to the doctor. Why? Because the last time I tried that, I was gaslit harder than a Victorian lamplighter on speed. Apparently, being disabled is just a “mindset.” Newsflash: it's not.

I sit, stare at the rain, storms maybe. Or is that just me projecting? My rockabilly psychobilly past screaming in the background while Titus turns up the music, like that’ll drown out my body’s rebellion.

The NHS dentist? Legend. The chemist? A robotic death dispenser. And everyone else? Absent. Because disability makes people uncomfortable. It’s like they think they’ll catch it from me if they listen too long.

Friends? Dead. Or fucked off the moment my MS became “too much.” I say it how it is and that scares people. Well, boo-fucking-hoo. I’m sick, not contagious. But even that’s too much for this society of sanitised cowards.

So here I am. Watching. Absorbing. A goblin at the edge of the world, unwanted, unseen.

But I know who I am. I know. I am a spiritual humanitarian. I stand for the broken, the weird, the abandoned. I am not finished, no matter how badly my body wants me to be. And to those who still fear me or avoid me—good. Stay scared. You’re not invited into my darkness.

                                 !!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

Let’s talk piss and shit. No frills. No sugar. Just the raw, soggy truth of what it’s like when your body declares independence from basic toilet protocols.

Bladder Hell: The Yellow Frontline Ah yes, the dreaded leak that moment you realise your trousers are no longer allies but soaking, complicit traitors. I was in my 40s when my bladder started acting like a temperamental toddler on a diet of Red Bull and rage. First it was the "can't pee" problem standing there like a statue, nothing but the occasional drip as if my urethra had stage fright.

Then came the grand reversal: involuntary leaks. And by "leaks," I mean a full-scale Niagara event, unprovoked and unapologetic. I tried everything. No drinks after 5pm. Strategic peeing. Mental negotiation. Nada. Still I’d wake up in a puddle like some pissy version of The Little Mermaid.

Doctors? Oh please. Gaslit for 40 years. "Well, you're getting older." "Try pelvic floor exercises." Mate, my pelvic floor is about as stable as a jelly trampoline.

But here's the kicker: you learn humility. You either cry about it or laugh darkly while rattling down the road in your three-wheeled piss trolley of doom, trailing a golden hue and existential dread.

The Brown Files: Tales from the Other End If the bladder doesn’t get you, your bowels surely will. MS gives you the delightful choice between constipation so hard it requires an exorcism, or the soft, sticky sneak attack that turns underwear into a crime scene.

Let’s break it down:

Numb arsehole? Check.

Dead rectal nerves? Of course.

Surprise poo party mid Tesco visit? You bet.

Walking like a guilty toddler trying to hide it? Standard.

Doctors again? "Try laxatives!" Yeah, thanks. Nothing like chemical napalm to turn your ring into the gates of Mordor. You want a real solution?

💡 Hydration. 💡 Diet. 💡 And a bloody bum washer.

That’s right. Stop sandpapering your crack with cheap loo roll. Install a bum washer attachment. Use aloe wipes, keep essential oils to hand, and for the love of whatever gods you follow, always carry spare underwear.

Because nothing screams confidence like shitting yourself in public and power walking with a face like you've seen God and he was laughing.

                       “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

So the van passed its MOT. Just.

And by "passed", I mean it limped through with a laundry list of advisories—most of them variations of:

“Yeah, this bit’s rusting. And that bit. And that one too. But hey, it's not quite fallen off yet.”

Basically, it's fine... until it isn't. Nothing “urgent” apparently, just that sort of creeping, crusty decay that matches my general outlook on life. A bit like me really—functional, but hanging together with spite and corrosion.

The trip down was hellish. Not because of the usual tourist caravan wankers, though they were out in force, streaming down into the soggy bosom of the sometimes-sunny South West. No, the real bastard was the new roads. Smooth, fresh tarmac—and a 30mph limit slapped on it like a cruel joke. You’re crawling along in a perfectly capable machine, stuck behind some Prius doing 27, and then the signs start laughing at you: 20mph through a village with 14 people and 300 plant pots.

It’s like someone redesigned Britain for the safety of ghosts.

👨‍🔧 Garage Guy: The MOT Goblin I rolled into the garage and waited in the chair. Didn’t speak much. Not because I’m shy, but because the owner’s a loud-mouthed, self-important bellend who never misses an opportunity to let me know how hilarious he thinks I am.

“You still alive then, Gandalf?” “Don’t bite me, Dracula.” “What’s it like living in that van full time, mate? Bet it smells of pot noodles and broken dreams.”

Ha. Ha. Ha.

He’s been like this for years—one of those blokes who thinks banter is a personality trait, and disabled people are fair game because you can’t chase them down the road. I’ve asked him about the VAT exemption before (the one tiny crumb of benefit I get from this absolute shitshow of a body)—and every time he acts like I’ve just farted in Latin.

“VAT off, mate? Nah can’t do that. It’s complicated innit.” (Translation: “I can’t be arsed and you make me uncomfortable.”)

Now, instead of losing it like I used to—because believe me, I used to unleash hell—I just don’t engage. I sit there with my travel mug, staring into space like I’m watching the last embers of civilisation flicker out. And I get Albertine to call him if I need anything. Because I can’t be bothered dealing with people who think they’re doing me a favour by letting me spend my money.

🛒 Retail Hellscape: Aisles of Pain So it passed. The van. Not my mood.

We figured we’d do some shopping. Another mistake.

The car park at this giant multi-national corporate parasite of a supermarket was pure anarchy. Disabled bays? Forget it. Half taken up by BMWs with no badges and drivers who look like they vape Monster Energy. The rest were jammed with people "just nipping in" for an hour.

Inside the shop, I was instantly overwhelmed by the noise. The lights, the people, the bloody smells. Everything about these places makes me feel like I’m stuck in some post-apocalyptic game show. And I don’t “see” people anymore, not properly. They turn into ants. Skittering, swarming. Trolley-humping meat sacks with Bluetooth earpieces and discount lust in their eyes.

I wear a look that says:

“Don’t talk to me. Don’t help me. Don’t fucking exist near me.”

Which mostly works. Until the food smell hits.

See, I don’t just dislike food smells. I don’t find them “overwhelming.” No, for me it’s more like this:

If I smell it, it’s already too late.

My body goes straight to DEFCON 1. My gut twists like someone’s wringing out a wet rag full of knives. I could be smelling chicken fat or the ghost of some sausage roll that died in 2006—it doesn’t matter. My bowels clock it and decide now is the perfect time for a surprise performance.

I bolt. Well, roll. Fast.

Back to the van. Just in time. Slam the door. Flip the lock. Drop into the onboard toilet like it’s a lifeboat and the Titanic is already gone.

What followed was ten minutes of absolute, full-volume, gut-churning agony.

Afterward, I slumped next to Albertine, both of us wilting in the heat, fans and air con blasting, van windows wide open like I’d just fumigated the place. I told her:

“Just another day in my living hell.”

🎯 Real Talk People don’t get it. The physical pain. The mental gymnastics it takes to get through a day without breaking someone’s nose or bursting into tears. The dignity you trade for the right to go outside.

So when I say this blog is called My Living Hell—I’m not being edgy. I’m being accurate.

                     “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

Today’s spoon count? Absolutely fuck all.

I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

But yeah, I’m fine, thanks for asking.

P.S. What’s a Spoonie?

A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

             “  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 ✨🧌