Disability Real Talk

⚠️ 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

It’s a lovely English morning by which I mean it’s grey, wet, foggy, and has all the charm of a forgotten Victorian asylum. The sort of weather that makes you feel like something wicked this way comes… probably dysentery.

But the real storm wasn’t outside. Oh no, that was merely atmospheric foreshadowing. The real chaos came from within, unleashed by my optimistic decision to try a “clean eating” article—free from gluten, dairy, sugar, joy, and apparently, sanity.

Reader, it lied.

What I ingested was not food, but an unholy catalyst a dietary Trojan horse packed with demonic forces. Within the hour, I was transformed from your friendly neighbourhood MS blogger into something between Linda Blair in The Exorcist and a firehose with feelings. Explosive vomiting? Check. The other end? Think Pompeii, but more intimate.

I spent the night oscillating between the porcelain throne and questioning my life choices. At one point, I was so violently ill that I swear I transcended my body. A full chakra-cleansing purge, complete with a hot shiver that rattled even the bits of me that are usually numb. You know it’s bad when you’re mid-vomit thinking: “Well, this is new.”

And now, in the aftermath, here I am wrapped in a blanket, scrolling through the digital madhouse formerly known as Twitter (now "X" because even the platform had an identity crisis). Everyone’s losing their collective minds over the NHS again, and I get it. Believe me, I get it.

Because while they all tweet, I get texts from my chemist like I owe them money and blood. “Your prescription is ready,” they say, as if it’s a treat. Last time, the robot in the pharmacy spat my meds out like an angry fruit machine, accused me of breaking it, and gave me someone else’s Drugs!. It’s a bit like Russian roulette but with fewer rules and more incontinence pads.

Doctors? Oh, I’ve had a few. Some good. Some gaslighters in lab coats. The kind who think if you’ve got long hair, a wheelchair, and a beard that says "I summon demons for breakfast", you can’t possibly have a brain worth listening to.

Case in point: my neurologist. Last seen alive eight years ago after I accidentally shattered his middle-class expectations. He took one look at me, as I rolled in with my biker cut and Electric wheelchair, and you could see his soul try to leave through his sphincter.

But here’s the plot twist they were wrong about me. I’ve taken control. I’ve gone alternative. My AI doesn’t lie, and it doesn’t sigh and look at its watch when I speak. I’ve sorted out my own care better than the revolving door of NHS disinterest ever did.

So yeah, rant over. Or rather, volume one concludes. Because the journey dear reader continues. And it’s paved with codeine, caffeine, and a healthy dose of "sod this for a game of soldiers."

Cheers.

                   “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 Monday morning rolls in like a drunk ghost with a hangover. The plan was simple: limp the van to the garage, smile through the quote, and pretend life wasn’t an endless endurance test. Instead? I woke up feeling like absolute hell.

The tinnitus was howling in my right ear why the right? No bloody idea. Maybe it's trying to whisper cosmic truths from the land of the dying neurons. Or maybe my brain’s just bored and wants to recreate a factory floor soundtrack.

Then came the message. One of my dad’s friends. My father—aged 90, tough old bastard that he is—has had another fall. A serious one. Condition? Not good. I felt it. No, not in some woo-woo psychic TikTok way. Just that grim knowing. He’s nearing the end of his road. And I hate it.

Here’s the twist most folk don’t know: I’ve only known him since 1999. That’s when I tracked him down in New Zealand, after decades of being the state’s little secret. Turns out I had siblings. More ghosts in the family cupboard. We Skyped until Skype did what all modern tech does it stopped working and caused chaos. He struggled with computers (who doesn’t at 90?), so we switched to WhatsApp.

We actually spoke last week he’d just had another heart attack and a previous fall. Still sharp. Still Dad. But I sensed the edge then. The slipping. And now it’s here.

The Origin Story? Grim as Fuck. I was adopted at six weeks old, plucked from a “mother and baby unit” and handed to the new parents from hell. The sort of couple that make Dickens’ villains look like amateur dramatics. If you've read this blog, you’ve seen bits and pieces of that trauma circus already.

And today? Today the past and present just smashed together. The man who gave me half my DNA is slipping away, and I’m sitting here sweating like a water tap on steroids, tinnitus screaming, hugging a pillow like a lost child, and Ozzy’s voice clawing its way through the noise. When it gets worse? It’s Motörhead time.

I just want to ride hard again. To feel the wind rip through my hair. But instead, I’m stuck here in this twisted freakshow of cognition, fatigue, grief, and biological inheritance.

Still, what can you do? Welcome to my world of weirdness. Population: me, and maybe a couple of dead kings.

🚐 For Albertine She’s the one who drives when my body won’t, the one who holds the wheel when the road blurs, and the one who doesn’t flinch when the darkness hits. Without her, I wouldn’t get far not to the garage, not through the grief, not through the noise. Albertine: my co-pilot through this living hell. And the reason I’m still in the fight. Always.

                     “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

If you could see MS, you wouldn’t call me “brave.” You’d run. You’d grab your oat milk latte, clutch your yoga mat, and bolt like the floor just cracked open.

MS isn’t just some misunderstood condition that makes you “a bit tired.” It’s a chronic possession. A neurological horror that turns your own body into a traitor. If it had a face, it’d be wearing your skin and whispering, “Not today, legs.”

Here’s what Part 2 looks like: Cognitive fog so thick you forget what day it is, mid-sentence. Mid-thought. Mid-life.

Fatigue so biblical you feel like you’ve been exorcised, worked over, and nailed to a wheel. And then someone asks why you haven’t answered your emails.

Spasticity that locks your limbs in a rigor mortis cosplay while you smile politely, because God forbid you scream in Tesco.

Pain like a bag of nails under the skin. Invisible, so people assume it’s “just anxiety.” No, Mildred, it’s neuropathy. My nervous system is staging a revolution.

Bowels and bladders that treat you like a hostage. Every public outing is a tactical operation. Every seat, every loo, every escape plan scouted, rehearsed, prayed for.

But the worst part? It’s not the symptoms. It’s the looks. It’s the passive-aggressive “You don’t look sick.” It’s the fake concern, the pity wrapped in judgment. It’s the gaslighting of the disabled doctors, relatives, strangers. Everyone’s an expert until you ask them to live a week in your ruined skin.

I have MS. That means I live in a 24/7 haunted house, except the ghost is me. Every step, every breath, every smile—a bloody-minded act of rebellion.

Why I Wrote Part 2 Because part one was polite. Part one was nice. This is truth with its teeth bared.

People still don’t get it. They think I’m just “a bit forgetful.”

They still ask why I need a chair.

They still assume I’m okay because I can post something funny on the Blog or X.

So here’s the dark: I am a battlefield. And I’m still here. Which makes me terrifying.

              “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

Right. Look—I’ve probably gone on about Serapis Bey before. Maybe once, maybe fifty times. I can’t remember. MS has turned my brain into wet cardboard. Thinking hurts. But this one? This one’s worth dragging through the static.

So buckle up, kids. Grandad’s got a story.

It was 2012. I was 53, bedridden, and my body felt like it had been dropped down the side of a motorway and left there to rot. MS had chewed through me like I owed it money. My spine was screaming. I’d pissed off death, and he was circling like a vulture with a stopwatch.

And then he showed up.

Serapis bloody Bey. Not the kind of name you expect to hear when you’re lying in bed in agony wondering if this is it. But there he was. Not a dream. Not a hallucination. Not the ghost of some acid tab from ’79 finally cashing in. The real deal.

Tall, glowing, ancient. Like someone had lit a bonfire inside a Greek god. No words at first—just presence. Then the message came in clear:

“You need to shift. You’re going down fast. Change—or it’s over.”

Didn’t sugar-coat it. Didn’t pat my hand and call me brave. He said: Get your shit together. And I did.

That moment cracked me open like a ribcage at a demolition derby. Everything I thought I was burned off. What was left was raw. Real. And somehow stronger.

I’ve been a lot of things in this life. A biker. A bastard. A brother. A wreck. But that night made me me again, in a way nothing else ever has.

It’s been nearly 13 years now. I still sit here in this wheelchair, beard down to my chest, hair long as sin, and I still feel the fire of that night. Everything I believe, everything I write, everything I am—it comes from that cosmic kick in the arse Serapis Bey delivered.

So yeah, I’ve done my research. I know the “Ascended Master” label sounds like something you find in the bargain bin at a dodgy new age shop next to some incense and a badly-carved dragon. But forget the fluff.

This was real. It is real. And I don’t care if anyone believes it.

Truth doesn’t care about approval.

        “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 ✨🧌

Well, what a week it's been. I'm currently sat here talking to my speech-to-text app like some deranged oracle.

Battery life? Liar. Sporadic power at best. This so-called “smartphone” isn’t smart at all. I tell it to power down—it sends me to a bloody help page. In the end, I worked out a hack to switch it off. Because apparently, being disabled means needing a PhD to press a button.

My fingers are numb. Hands barely functional. Tactile feedback? Gone. Tiny buttons are useless ornaments to me. Touchscreens are a little better—still a pain, but I don't need to perform a séance just to answer a call.

I keep the phone in a Faraday bag overnight. No signals in, no signals out. Paranoid? No. Realistic. I don’t need Alexa learning how many antihistamines I pop daily.

Speaking of which—my allergies are off the fucking chart. Hay fever is now a cosmic entity. Took so many antihistamines, I’m practically embalmed. Side effects? Mild haunting. Random dissociation. Full-body brain fog. But hey, better than full-on freak-out.

MS loves to sprinkle in a panic attack for seasoning. The good kind—the ones that make you curl into a corner and question whether you’re even a person anymore. And if I forget my pills? Cue existential hell.

The electrical storms in my brain? Picture a lightning bolt shagging a power station. BANG. That’s what my neurons do for fun.

Today? Balance gone. No walking. Grabbed furniture, ended up grabbing air. Wheelchair day. Again. Will I never learn?

Overdid it. Spoons: gone. Days or weeks until I get them back. It’s raining. Of course it is. Put on some music to distract myself from my collapsing nervous system.

My throat’s spasming. Too much talking. Break.

Haha—just transferred this to my PC and the spellchecker is climaxing with all the red lines. Absolute filth. Press the magic button—bam, respectable writing.

Took some oil. Spasms eased. Neck still hurts. Tongue’s numb. Mouth’s a dead zone. Remember novocaine? It’s like that 24/7. Eating is a carnival of self-harm. Choking daily. Cheeks bitten.

And that feeling—bone-deep weirdness. Invisible sprites stabbing needles in a crown around my head. Madness, right?

If I posted this raw, people might think I’ve lost it. Maybe I have. Cognitive decline has me screaming at walls. Memory? What memory.

I stare at what I’ve written and it’s just a tangled mess of frustration, grief, and fuckery. But I still have something to give, even if the delivery system is fucked.

Maybe I’ll keep doing this. Write from my broken, unhinged, seen-too-much mind.

I want to talk about MS. I want to talk about other things too. Will that confuse people? Maybe. Do I care? Less and less.

I just hope someone out there—another broken soul with a half-working body and a mind full of static—reads this and feels seen.

Life is for living, no matter how fucked up you are.

All you need is love.

Love is divine.

The universe is love.

The One is love.

But that’s just me.

— End transmission.

        “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 ✨🧌