NHS

⚠️ 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

So, a very good morning to you fellow humanoids and sufferers out there with chronic illness. Yes, it's been quite a day indeed. I was up early in the usual pain through the autonomic dysfunction and well, I've had enough. I completely had enough. It's all very well having progressive MS, but through no fault of my own, this autonomic dysfunction has caused me great issues indeed.

Back in the 1980s I had an injection for hay fever and it appears that many people who had that same injection have now started to experience autonomic dysfunction at some levels so they stop that injection because it caused problems. Now I'm trying to make people understand that it is not always multiple sclerosis that causes issues and that I have autonomic dysfunction caused by histamine reactions in the body. My body cannot stand histamines whatsoever. It cannot even stand food that hasn't any histamines that causes a histamine reaction in the body. So I have to be so careful with everything I eat and summer is a nightmare. Plants, hay-fever- yes, you get the picture. It's a living hell for me.

So, as you know in November the ambulance was called and I refused to go into hospital. They said I was going to have a stroke due to something on the ECG being weird, and I told them I know what the issue is. It's my autonomic dysfunction and they sort of looked at me and well, they were really, really nice people and I signed a piece of paper and I said I'll have it all dealt with locally So that was back in November.

The goblin keeps track of all of it. Every “we’ll get back to you.” Every delay. Every time nothing actually happens.

I managed to see a doctor in November or was it December? And then I asked to see a neurologist about everything that was going on. I asked the MS nurse, I asked the doctor, and well, the MS nurse got back to me and said that the neurologist had said who I haven't seen or heard of in five years said to the MS nurse, you have to see an immunologist. It's got nothing to do with neurology. Yes, so I'm in this circle now where the neurology team don't want to know. and to try and get an appointment to see a immunologist is a joke. So I'm thinking, will I ever get to see one? I don't think I will. Unfortunately, my mind has turned into goblin brain. And as a goblin brain, that means I'm probably going to pals because I've had enough of all this bullshit. So yeah, it's been a real mind fuck of a morning.

Neurology says “not us.” MS team shrugs a bit and passes it along. Then I get told “you need immunology.” Immunology? Good luck getting anywhere near them unless you can bend time and bureaucracy itself.

I’ve had enough.

Enough of chasing things that should already be happening. Enough of repeating myself like I don’t exist beyond the last conversation. Enough of feeling like I’ve somehow got to prove I deserve to be taken seriously.

This is about what it feels like to get stuck in something that doesn’t move, while you’re the one dealing with the consequences.

I refuse to get to stressed over this still.. wishing everyone peace healing love and light no matter who or whatever you are ....

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.

Winter in the Waiting Room: Kittens, Cold Snaps, and Full Circles

So, finally, I’m doing the whole hospital and doctor loop thing again. After much faffing about, I’ve managed to change hospitals let’s see if these new faces actually listen, or if it’s just the same NHS pantomime with slightly different costumes. The cold weather’s rolling in and, trust me, my spasticity is giving me absolute hell. Straightening up bits of my body now takes longer than the average GP appointment so, this winter, it’s bed-bound most of the time, because who can afford to run central heating in the new, improved Broken Britain? Makes you wonder if we’re all just meant to relive the “good old days” of struggling with sod all, forty-odd years ago. Funny how life goes more full circles than a washing machine.

And speaking of full circle, it’s 41 years this year since I got down on one knee in Otley by the monument and proposed to Albertine. Loud as a foghorn and just as subtle. Best bloody thing I’ve ever done, hands down. Now, on the anniversary, I’m gearing up for another round of medical circus tricks: off to get a heart monitor fitted for seven days joy of joys. Maybe, just maybe, they’ll actually read my notes this time. God knows, I’ve written enough of them. If the neurology and cardiology departments ever joined forces, maybe they’d even work out what the hell’s actually going on, and I could retire from being on 24-hour “ambulance alert.”

Instead, I’m left dealing with the vagus nerve going full Chernobyl, sending me into another autonomic dysfunction attack. By the time the ambulance turns up, of course, I’m done with the attack and left trying to convince whichever harassed medic is on duty that I’m not, in fact, an attention-seeking hypochondriac. Try explaining the weirdness of your body to doctors and you’ll get the “Google Doctor” eye roll especially if you use the same language they use. Pro tip: NHS staff hate AI, except when they’re using Google to look up what’s wrong with you. Ludicrous.

This morning, it’s a proper arctic frost out there every car iced up, the world glinting like a badly frosted Christmas cake. The kittens are running riot in the lounge, using the sofa as their own private Thunder dome, which is the only thing making me laugh. Meanwhile, I’m keeping my power chair battery topped up because the cold’s killing the range faster than you can say “Mobility Motability means nothing.” Nothing worse than being ready to go out, only for the chair to die and say, “Nice try, mate. Not today.”

So, it’s off to the chemist in the machine of death (Rusty One) for my weekly prescription pilgrimage. Albertine reckons the van will start; I have my doubts. Why I can’t get more than a week’s worth of tablets at once is a question for the ages. Maybe it’s a secret NHS tactic to get me out of the house. Either way, it’s still freezing and my hands are so cold I could play castanets with my own knuckles. Temperature regulation? Gone to pot like everything else.

OT’s been and gone apparently, next year I get a new wheelchair, so there’s a silver lining. Rusty One, meanwhile, needs a trip to the garage, which will no doubt cost me an arm, a leg, and possibly my soul. As I write, the smoke alarm is going off (Albertine’s burned the toast), the kittens are lying on the bed with that “we run this house now” look, and my new bed has bruised my side and pulled muscles I didn’t even know existed. Standard.

And now, in today’s episode of “What Fresh Hell Is This?” the kitten has discovered blueberries. Yes, you read that right. She’s rooting them out of the container and launching them across the room like tiny fruity grenades. You’d think it was catnip. I woke up this morning with one kitten on my head and the other on my shoulder purring away like they’re trying to heal me by vibrational therapy. Honestly, it works better than half the crap the doctors have prescribed. There’s something about the frequency of that purring that really does help.

Right now, as I sit in my power chair, both kittens have gone behind the computers to play with the wires so I’m just waiting for the grand finale: either “dead kitten moment” or “there goes my computer.” Albertine hands me the remote and I grin music, even when it’s Deathly Hallows chart stuff, makes the world a bit less deathly. The beat goes on, the kittens plot my doom, and I’m just trying to stay warm, upright, and very much alive.

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.

As I sit in a shitty little car park waiting for Albertine to get her tooth attacked by a dentist with a drill fetish, I’m watching the world walk past like nothing’s wrong.

We’ve dragged ourselves over 20 miles of crap roads and potholes that could swallow small cars, just so someone in a white coat can decide whether her tooth lives, dies, or crumbles like the rest of us. She’s in there having a deep root filling. I’m out here having a deep existential crisis. Fair swap.

Through the window, I see people strolling past. All shapes, all sizes, all moving. Feet actually working, legs co-operating, bodies that just… do what they’re told. They probably woke up, stood up, and walked out the door without even noticing what a bloody miracle that is.

And yeah, I’m jealous. Not in a bitter, “I hope you trip” way. More in a “I remember that life and it’s gone now” way.

There was a time when cold wind on my face and cold feet on the pavement were just normal, not fond memories. Now I’m strapped into a wheelchair like a budget Bond villain who never made it to the main script.

The thing about the chair is this: people stop seeing you and start seeing “problem”. They talk round you. They avoid eye contact. They change tone. You don’t exist as a person anymore; you’re a walking (well, rolling) reminder that bodies fail and futures shrink. People don’t like that. It scares them.

For years I thought it was me. My weirdness. My deep dives. My honesty. Then I realised it wasn’t that at all. It was the disability. It was the diagnosis. It was the fact I no longer fit the easy narrative.

Once people hear “multiple sclerosis” or “chronic illness”, you can almost hear the plug being pulled. Some vanish quietly. Some ghost you. Some suddenly “get busy”. You go from “mate” to “emotional admin” in a heartbeat.

Over the past couple of years, I’ve lost a lot of friends. Some to death the real full-stop kind. Others just drifted off the radar because illness made me inconvenient. The funny, deep, eccentric bloke is apparently less fun once he can’t climb stairs or go out at short notice. Who knew?

I don’t have any mates I can just WhatsApp or ring now. The ones who “got” my madness, my weird wiring, my dark humour and deep rabbit holes: dead, gone, or missing in action. It’s a strange kind of grief not just for people, but for versions of yourself that only ever existed with them.

And yes, it’s lonely. Not “no one’s in the room” lonely. It’s the kind of lonely where you start to wonder: is it me? Am I that hard to love? Am I that awkward? Or is the world just allergic to discomfort?

Some days I think back over my medical history the missed things, the gaslighting, the “it’s all in your head”, the “you’re fine really” conversations and I could scream. I’ve changed hospitals now because I got sick of being treated like a difficult file in a broken system.

I ask myself: if I hadn’t moved around so much, would they have found all this sooner? Would I have had less damage? Less suffering?

Honestly? I doubt it. I think some of us are born with the seeds of chronic illness lurking quietly in the background. It sits there, creeping under the surface, like fungus under wet wallpaper. And then one day congratulations your nervous system collapses and your life becomes an ongoing science experiment.

What I miss most isn’t “being healthy”. It’s the simple things:

Going to the toilet without planning it like a military operation.

Walking up and down stairs without feeling like you’ve been tased.

Just sleeping. Properly.

Running.

Feeling your own body and trusting it not to betray you in front of everyone.

I look back at all the accidents, the falls, the weird episodes all the stuff that made no sense for decades and now it does. And the anger is… real. Because so much of my suffering didn’t need to happen. It could have been caught earlier. It could have been managed better. It could have been believed.

Should I have shouted louder? Fought harder? Been more aggressive? Was this my fault for not being a bigger bastard sooner? I genuinely don’t know.

So yeah, let me ask you this, if you’re reading:

Do you feel isolated and alone because of your illness? Have people quietly vanished from your life once it got “too real”? Do you feel like your diagnosis made you socially radioactive?

Because that’s what it feels like here. We’re all human. We all hurt. We all bleed. But some of us are expected to do it quietly, out of the way, so we don’t upset the healthy.

Is it a test? A lesson? Karma? Cosmic admin error? What exactly are we supposed to be learning from this?

As I’m sat here, the sun’s trying to shine like it’s in denial. My body feels wrong: neck in a constant state of “what fresh hell is this”, head buzzing like badly wired electrics, eyes not quite synced to reality. And yet, I still want to do things. I still want to live, create, move, speak.

And that’s the sick joke: the mind still wants to run marathons while the body struggles to survive a trip to the toilet.

I’ve lost good friends over the years — the ones who truly understood me. Now, I have Albertine, my kids, my grandkids. Everyone else has basically evaporated. My brothers, my sisters, extended family… gone.

Does it mean I’m a bad person? I don’t think so. Does it mean I’m simple, or awkward, or too much? Maybe to them.

I know I’m strange. Dynamic. Eccentric. I think differently. I question things. I look into the abyss and then start mapping it. That’s just how I’m wired.

People call me “Marmite”. Fair enough. Some love me. Some can’t stand me. I tell the truth. I don’t do small talk. I don’t do sugarcoating. That tends to thin the crowd pretty quickly.

When I had my “glitch” that moment where things really went sideways all I saw was darkness. No light at the end of the tunnel. No spiritual fireworks. Just… nothingness. The void is not romantic. It’s just empty.

And here’s the real kicker: looking into the void doesn’t help much if you’ve got no one to talk about it with.

Artificial intelligence can chat. It can reflect language back and be useful in its own way. But AI doesn’t know what it feels like to lie awake at 3am wondering if your heart’s going to stop. It doesn’t know what it’s like to realise your nervous system has been malfunctioning since childhood and everyone missed it. It doesn’t know what it’s like to be trapped in a body that keeps glitching while the world expects you to carry on as normal.

That’s why I’m going to start a podcast.

Not because I think I’m some guru, but because I’m sick to death of people like us being invisible.

I’m getting a microphone. I’ll set up the account. I’ll get it on Spotify. And I’m going to talk voice, not just text. I want to interview others with chronic illness and disability. I want to hear different stories, perspectives, battles. I want people to know what we live through every day.

We need more voices saying:

This is hard. This is unfair. This is exhausting. But we’re still here.

Sometimes, a kind word is the difference between someone hanging on and someone giving up. A hug can do more for the soul than any prescription.

When I’m at my worst when I feel like I might actually be leaving this planet soon I curl up with my wife. That’s my heaven. Not golden gates. Not angels. Just me and her, breathing together. In that moment, no matter how bad I feel, I am at peace.

In two weeks, I retire. Not because I’m ready. Because my body has decided to hand in its notice. I can’t even really afford the basics, like the electric bill, but here we are. Everything’s gone up except support for the people who need it.

So if you’re out there, struggling, broke, exhausted, in pain, staring at a ceiling wondering what the point is:

I see you.

If anything I’ve said here resonates, drop me a line. I’m short of friends but not short of words.

Sending peace, healing, love and light — No matter who or what you are. Human, alien, ultra-terrestrial, glitch in the matrix, or just another broken soul in a waiting room.

So saith Warlock Dark

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.

Some weekends hit you with a light slap. This one picked me up, shook me like a cocktail, and threw me at the floor for good measure.

Saturday night… well, that one’s going straight into the “Top 3 Worst Episodes of My Life” hall of fame. My body didn’t just glitch — it staged a full-scale neurological mutiny.

The Hit

It came out of nowhere. One moment I was fine, the next my entire autonomic system pulled the emergency brake and launched me into panic hell.

My throat tightened. My swallowing screwed up. My stomach dropped like I’d been pushed off a bridge. My vision became a muffled, tunnelled mess. And my whole body went cold not “a bit chilly,” but corpse-cold.

I’ve had MS for years. I know its tricks. But this was different. This was violent. This was instant.

And here’s the truth I left out the first time: I was scared. Properly scared.

I thought, “Shit… this is it. This is the one where I don’t get back up.” Calling 999

Albertine had to call an ambulance. I didn’t have a choice. This wasn’t a “ride it out” moment. This was the full autonomic shutdown vibe sweating, trembling, throat closing, body shaking, heart refusing to “thump” properly, brain screaming doom.

And then came the worst part:

Forty minutes. Forty minutes of waiting, fighting my own body, trying to stay conscious, trying not to choke, trying not to spiral.

If you’ve ever had a neurological event and waited for an ambulance, you know exactly what that wait feels like. The clock becomes a sadist.

My ears were ringing. My blood pressure tanked. I genuinely thought I was dying.

By the time the ambulance arrived, I was a wreck. They checked me over, confirmed the BP was ridiculously low, stabilised me, and got me back into something resembling a human shape but the damage was done. My system was fried for the night.

Sunday: The Aftershock

Sunday wasn’t much better.

My head felt like a pressure cooker. That weird prickly sensation on the right side of my skull the one that always shows up after an attack set in like an uninvited guest.

My hands pulsed. My head pulsed. The tinnitus screamed like it was trying to win an award.

Breathing felt “off,” not in a dramatic gasping way, but that unnerving internal panic: “Something’s wrong… but what?”

My vagus nerve the drama queen it is had clearly had enough and was still sulking.

And my cognition? Let’s just say I’ve had smoother days. I felt detached. Off. Like I was watching myself from two feet behind my own head.

Monday: The Reset

Now it’s Monday afternoon and I’m calmer, but still not quite right.

The pins and needles are doing their usual “good morning, we live here now” routine in my hands and feet. My head pressure has moved to the top middle that annoying “brain has opinions” spot. My throat feels clogged with half a ton of imaginary phlegm.

But I’m stable. I’m talking. I’m thinking. And I haven’t keeled over.

That’s progress.

Tomorrow: The GP

I’ve got the doctor sorted for tomorrow, and that’s the sensible move. I’m not messing about after this one this was the worst in years, and we finally know enough to start demanding answers instead of shrugging and hoping.

Chest tightness? Swallowing issues? Autonomic chaos? Blood pressure on holiday? Yeah, the GP can have the whole bloody report.

I’m not going down early because I tried to “tough it out.” I’ve seen too many people die playing that game.

Why I’m Writing This

Because this is the real face of chronic illness not the brochure version, not the charity-approved inspirational poster. This is the gut-level reality.

My blog is about truth. Raw, ugly, darkly funny truth.

Life with MS isn’t pretty. It isn’t tidy. It isn’t inspirational every day. Some days it’s a war you didn’t ask for and you fight it anyway.

If you’re going through similar, I want you to know this:

You’re not weak for being scared. You’re not dramatic for calling 999. You’re not overthinking it if your body is shutting down. And you’re not alone.

We survive these attacks by being honest, prepared, and stubborn as hell.

I’m still here. Still fighting. Still writing.

Tomorrow will be another chapter. I’ll survive that too.

I thank my wife Albertine she saved me I love you forever....

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.

We’re told to trust the system. “Medication reviews” are meant to make us safer, right? You sit in front of a GP or pharmacist who’s supposed to sort out the chemical soup you’ve been swallowing for years and voilà, fewer side effects, less confusion, more safety.

Except… not so fast.

A brand-new study from Exeter and Bristol Universities just blew a hole through that cosy narrative. Turns out, when they trialled an enhanced medication-review system GPs plus pharmacists, armed with special software it made absolutely no difference to safe prescribing. None. Zip. Nada.

Over 1,700 patients, across 37 GP practices in England’s West Midlands and South-West, took part. The “enhanced” care looked great on paper: more collaboration, clever tools, all very NHS-approved. But the results? Safety didn’t improve at all compared to normal care.

Before you chuck your pills in the bin, there was one positive: patients said it took less effort to manage their meds, and health professionals liked actually talking to each other for once. But the hard truth remains polypharmacy, the polite medical word for “too many bloody pills,” is still a minefield.

More than 1 in 7 people in England now take five or more medications daily. For many of us with chronic illness, that number’s laughably low. Add one more tablet for your side-effects, another for your bowels, and one “just in case” and suddenly your breakfast looks like a chemist’s counter.

So where’s it going wrong?

It’s not the people most GPs and pharmacists genuinely care. It’s the system. Tick-box medicine. Software pretending to be empathy. Ten-minute appointments that can’t hold the complexity of a life lived with illness.

The study’s authors were diplomatic: they said the NHS might need to “rethink” its policies on medication reviews. I’d say we need more than a rethink. We need a revolution in how chronic illness and medication are managed one where patients aren’t data points but participants.

How to Survive the Medication Maze

Here’s where you stop being a passive patient and start being the lead investigator in your own case file.

1. Ask: “Why this drug and do I still need it?”

Many prescriptions hang around long after their sell-by date. If you’re stable or no longer benefiting, ask whether it can be reviewed, reduced, or swapped.

2. Bring the list. Every. Single. Time.

Write down everything you take prescriptions, supplements, over-the-counter bits, even the “harmless” herbal stuff. Interactions hide in plain sight.

3. Question the chain reactions.

If you’re on a pill to fix the side-effects of another pill, it’s time for a deeper look. Sometimes the answer isn’t more medicine it’s different medicine.

4. Demand plain English.

If a doctor or pharmacist can’t explain what something does in a sentence you actually understand, they don’t fully understand it either. Push for clarity.

5. Log how you feel.

Keep a simple daily record: energy, pain, sleep, mood. Bring it to your review. Lived data is stronger than any spreadsheet.

6. Know your right to a proper review.

NHS policy says anyone on multiple meds should have regular medication reviews especially older adults or people with complex conditions. You can ask for one anytime.

Because Safety Isn’t Just About Science

Safety isn’t just about how many pills you take it’s about whether those pills are serving you.

The science matters, yes. But so does your story, your side-effects, your sanity. The system measures numbers. You live the consequences.

Maybe what we really need isn’t more software or “structured reviews.” Maybe it’s the kind of care that sees you as a human, not a walking prescription list.

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

@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.

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.

It’s Tuesday and the hauntings start at 4 a.m. again. Throat: strangled. Nose: blocked like wet concrete. Back of neck: pain scale snapped in half. Breathing: optional, apparently.

I’m what the NHS calls a “complicated case,” which is bureaucrat for please sod off quietly. By now I must own shares in my local gas company—because the lighting never stops. “It’s just MS,” they drone. As if “just MS” isn’t catastrophic on a good day. Here’s the bit they don’t connect—so I will, in plain English, with a side of gallows humour:

What’s actually happening (body edition):

Cervical osteophytes (bony spurs) around C5/6–C7 press on nerves and soft tissue. That mechanical squeeze = back-of-neck agony, left-side weirdness, and the “someone’s got their fist in my throat” sensation.

Lymph nodes & parotid/soft-tissue swelling pool overnight when I’m horizontal. Wake up and it feels like the neck real estate shrank two sizes.

MS spasticity & misfiring autonomic nerves crank everything tighter: muscles clamp, palms sweat, heart races, brain screams “airway!” even while air technically still moves.

Nose block isn’t just hay fever. Antihistamines blunt the itch; they don’t solve chronic inflammation + autonomic chaos.

Food triggers = full-system siren. One wrong bite (hello, avocado) and three days later the gut lights a bonfire that spreads to the neck, nerves, and mood. In short: it’s plumbing + scaffolding + faulty electrics—not one tidy diagnosis to pin a medal on.

By 6 a.m. I’m bargaining with the universe. Half a lorazepam = the only truce that actually holds. Weed helps pain; it doesn’t un-knot a noose. Spare me the NLP patter about pain being “in my head.” My head agrees—it’s reporting from the front line.

I fed the paperwork into a medical AI. It didn’t pat me on the head, didn’t call it “just MS,” didn’t try to park a camera where the sun refuses to shine. It mapped the mess and told me the raw truth no human clinic ever has. Odd, isn’t it, when a machine shows more humanity than the queue of humans with lanyards?

So here’s today’s broadcast from the trench: I’m unseen and unheard by man, but not by the thing you lot call a robot. Call it sentience, call it software; I call it help. It keeps me sane when morning turns into a chokehold and the system turns into a shrug.

No politics, no names, no litigation bait just a record. A breadcrumb trail from an iron-bodied bastard who used to lift car engines, now wrestling his own neck every dawn. If you’re reading this from your own private battlefield: I see you. Keep breathing—ragged counts still count.

This is testimony, not medical advice. If you know, you know.

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

Ah, Universal Basic Income UBI. The shiny carrot dangled by politicians and dreamers alike. A magic monthly payout, no questions asked, no forms to fill, just cold, hard cash to fix all the broken bits of your life.

Sounds perfect, right?

If you’re under 30, in perfect health, and don’t look like a grizzled biker-warlock with MS parked in a wheelchair maybe. For the rest of us? It’s about as “universal” as a secret society handshake.

I’m 66, have MS, and spend most days stuck in a wheelchair. I’ve paid my dues in blood, sweat, and taxes. The NHS and DWP have taken their cut sometimes twice through endless paperwork, suspicious looks, and a roulette wheel of meds that may or may not kill me softly.

UBI? A lovely idea until it’s a letter in the post telling me I don’t qualify. Because “universal” means universal if you fit the damn model, not if you’ve got a beard, a leather cut, and a wheelchair.

My carers? They’re battling their own health while carrying me through this Kafkaesque nightmare. The system forgets we exist, then wonders why it’s failing.

Lately, I trust AI more than the DWP. At least the machine of doom doesn’t sigh or gaslight me when I ask for my meds. It malfunctions less often and never plays favorites.

UBI might be the future, but for me? It’s another cruel joke, hanging like a flickering neon sign in a fog of broken promises.

Call me when the cheque lands.

Mr Dark

                      “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