Disabled Life

⚠️ 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 disfuction this may be a confusing read non ai content

hello fellow humanoids Well after months and months of waiting I'm going to test my wheelchair out today yes a three hour round trip but it will be well worth it rusty one has to go in the garage on Wednesday for a new starter motor and a lot of welding to be done for the MOT this year it never ends pay pay lol it doesn't matter that you're on a pension and can't afford much haha but such as life I suppose the whole past load of days has been an absolute nightmare my autonomic dysfunction got set off on Friday and I have had the weekend from hell

It's dark outside and it's raining and it's very cold indeed my body is giving me hell I am trying to stretch my legs and arms to try and get them working properly just think no more hassles I'm going to have an actual proper power chair without any hassles of the three wheel trolley of death or the other trolley that went dead battery lol

The most important thing is I will be able to get new things done that I have not been able to i'll be able to go out be able to go and see stuff for a change instead of being stuck in the van it's been a long time since I've been anywhere must be two years now it seems that I've I still have to self-isolated myself even though I'm now retired what with all the colds and flu and all the lurgies and Bugs going around lol but to be fair I Self isolate every winter as I don't see any point in making myself worse than I already am

The autonomic dysfunction came into full Force over the weekend because I dared eat some ground sunflower seeds and of course that set off the histamine reaction and it was bad it really is quite nasty to be fair here's just a few of the things that happen when you go through this autonomic dysfunction stuff So yeah, it's been quite a mad few days. Indeed, the autonomic dysfunction is getting less, but I'm hoping today for very good news indeed.

I am slightly feeling weird and very weirded out as the doctor will be ringing me with the results of my ECG, the week long test that I had before Christmas. Yes, and I'm hoping that things work out on the phone as I have my views on Whats up with me, and I just hope that they can understand what I'm going through as I am going through something that no human should ever have to go through. It's the most horrible thing I've ever been through.

So today Rusty1 went to the garage, yes Rusty1 is having the starter motor fixed and the rest of the rust taken care of. So we'll be hearing later on today how that went. Yes indeed, I'm thinking very very big bill. When is it ever a small bill when a vehicle is concerned? That's what I have to ask myself. But then again it is essential to my well being as if we didn't have Rusty1 I wouldn't be going anywhere would I? Yes I would not as I am a virtual prisoner in my own home until I get my proper power chair.

Speaking of the power chair, yes on Monday, I did the three hour trip and I have tested the power chairs that they had there and I'm getting apparently a quick 300 and hopefully I should have that within a month or so. So that was really well worth the trip but I must say as soon as I got back I was so knackered it was unbelievable. I had to go straight to bed. The old brain fog was quite remarkably bad along with tinnitus and the pain in my eye it's like a hot needle going through my right eye is no fun. Still I'm glad I didn't have to drive. Thank you Albertine for that.

So I'm sat here now waiting for the doctor to phone. Yes, I've got white coat syndrome and I'm not looking forward to the phone call and my nerves are jangling like there is no tomorrow because well, I have that Feeling of Doom as usual, especially when it comes to the doctor. Yes, so this is a bit sort of all over the place, this one, and yeah, I hope that you don't have issues reading my stuff because it's all over the place because I never know where I am. That's why I used to stick it through the AI, but it used to sanitise it too much and I used to end up arguing with the AI and that's never good for my stress levels...

I am still seeing weird stuff as well and I have been trying to get professional help and I'm getting nowhere fast. These things I keep seeing. Yes, I have spoken to doctors, neurologists and all sorts of different people and I think I'm an eccentric nut. They seem to sort of say, 'Yes, yes, sort of pat me on the head' and I copted a look at one of my notes and it said, 'As long as it keeps him fucking happy.' 'I should bloody cocco, why would somebody say that?' A professional. 'They don't know me, they don't know who I am, they don't know what I am, yet I'm always fucking judged.' I hate being judged by people who don't know me, it's one of the biggest things. Because I'm in a power chair, I dress different, I look different, my attitude's different, I am a person inside, you know. These sort of people seem to forget some people do. And to me, I find that highly offensive.

now am I a pensioner, but I'm an eccentric pensioner with progressive multiple sclerosis, and severe Autonomic dysfunction, and yeah, I'm different. And I get treated like a moron. Oh, I know, let's talk to the chair. That's the wooden chair next to me, because we might get more sense out of it. Really? Honestly. It really does piss me off when people talk down to me. Or people think that I am stupid because I am in a wheelchair or because I am disabled. Do you know what? It really angers me when people ignore me and then speak straight to Albertine about me without asking me. I am sick of it. But when you say something you are then accused of being an angry or weird person. You just cannot win. It really is a minefield out there. So in the future I am just going to refuse to say anything and I am just going to Stick to the basic facts. Nothing else. That's it.

sending peace healing love and lite to everyone

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.

Still, the holidays are over. And yes, did I have a good time? Not really. I do miss the Christmases of many, many, many, many years ago though. The big family Christmases of maybe 20, 30 years ago. So I'm hoping everybody, no matter whom, had a fantastic holiday season.

Personally, the holiday season really sucked for me. Yes, it really did. To be fair, the weather really did for me more than anything else. It seems that the south-west went uber, uber-frosty. And yes, it had consequences that are going to be felt well into the new year. Oh, the joys. Rusty 1 the van. Oh, turn the key and the battery is as dead as a dodo. And I have to go to the wheelchair services to sort my new wheelchair out in the new year. So here's hoping that I can get the AA over to come and start the van up. Here's hoping I don't need a new battery, otherwise that's going to be a real pain in the bum. That's what really annoys me. It's everything coming to a halt. It seems when the holidays arrive, everything stops and there we go. But that's just me I suppose.

Not to mention my phone driving me mad with all the text messages from the chemist, telling me that I have to be there to pick my prescription up. And yeah, I get busy people. Yeah, when you receive like three text messages and you can't go to get them because it's impossible. Yeah, it makes you wonder, doesn't it? And then I have to go and see the machine of death and put my numbers in and see what comes out. Will I break the machine? Will the machine break me? What will happen? Will the people be really happy with me? Will the chemist give me one of those knowing looks of oh here comes the man with the three wheeled trolley of death. And he's come to break my dispensary machine. Yeah, well these electrical things are not built the best, but they're a very good idea in practice. And should I say in theory they're a very good idea but in practice probably not the best.

So now it's getting in touch with the AA, get the battery sorted, probably a new battery. Oh, the joys of that. And then there's having to travel, what is it, 60 miles to go to the wheelchair services? I can't do it locally. No, it's a bit daft. But there we go, such is life. And if it's snowing, then I won't be able to go. Oh, dear. Do you know it's going to be snowing and you know the weather's going to be bad because I got a January appointment. It's never good down here in the snow. So yeah, I could be waiting even longer for my new wheelchair. Apparently it goes up and down side to side and there's all sorts of weird stuff. So I am looking forward to getting that. I bet it actually get out the house and go more places, see more people. It might be a go, oh yeah. I mean, how unreal is that? Actually go out. Actually go somewhere. Actually see people. But then again, do I really want to go out? Everybody seems to have the colds, flu, diarrhea, all these bugs and illnesses going around everywhere.

Now I'm retired. I may as well just say, hey, just don't bother ever going out again. And then I'll feel, well, just as shitty with the MS and the dysfunction. But hey, now at least I won't have the flu. But then again, people who deliver me food and stuff. Yeah, so it's all very well, isn't it? But self isolation can only go so far really. And then the end, you can probably self isolate the point where you never ever go outside again. And you never want to speak to anyone again. So then it inpeeds on your mental health. So yeah, some people seem to think being disabled is a very easy life. I can tell you it's not. Even doing this is making my head hurt the point that I want to stop but I'm not. That's the problem with chronic illness. You push and push and push until you can't push anymore.

So the bane of my life at the moment seems to be batteries. The joys of batteries and battery discharges, batteries exploding, batteries that don't do what they say on the label. Honestly, I think I've spent most of my money on replacement batteries over the past load of years. It's quite incredible. And it's always just outside the guarantee as well. So you're thinking, "Ah, yes." No, it seems all the electrical stuff doesn't last very long these days. I can remember having a radio solid state when I was only a teenager that I still probably had up until a few years ago. That's how long stuff used to last 40, 50 years. These days things can't last five minutes. It's a bit weird that. Seems things got better but don't last as long. That is very strange.

January is coming and let's hope the weather warms a little. The physiotherapist is coming over to see me in January for a look over I believe. So that should be interesting. Let's see what new exercises they can give me to help me. I'm sure they're very helpful. The person sounded very helpful and very knowledgeable on the phone and I'm looking forward to this appointment. but still waiting to hear from the neurology department as I want to get into this dysfunction business with them so they can help me out more. It really is a silly thing sometimes. I should have moved hospitals years ago, but I didn't and now I'm regretting that I didn't. So yeah, yes, that's down to me unfortunately. I am fed up with all these symptoms down the left hand side of my body, like my body has had a stroke. Yes, this dysfunction or auto dysfunction or however they say it or spell it is causing me hell. Because I cannot have any histamine in anything I eat, otherwise it sends me into this really weird place. But I am having to try and deal with it, but it is causing me heart issues as well. So I am waiting to hear back from a cardiology thing as I had a heart monitor for a week as well. Yes, I know what I think is wrong with me and I am just waiting back to hear that it is not as bad as it could be, but it is still bad if you know what I mean....

So to be honest, I've spent the whole of these last past few days trying to relax and de-stress. It's been very cold here. I've been trying to stay warm. I've been really getting into trying to get my diet sorted out. Now I know what's really going on. And that's starting to help. Believe me, change of diet is everything. It done half-help, I'll tell you. MS and this autumn Munich dysfunction. Oh my word. Food really, really causes hell with it all.

Yeah, well, now my spelling. I'm using voice to text to do this as my fingers are completely numb and I cannot feel anything with my hands at the moment. My voice is slightly croaky and some of my words are, well, not what they seem. It's just too funny. But I refuse to put my words through AI as it sanitizes and changes my words too much. So you'll probably see the complete change in my writing style. Yeah. But there we go. I was told use your own words. Don't let the AI change your words. Then your real real words are true, genuine, not sort of AI made up stuff.

I have not forgotten about doing my spoken blog either and that is now being sorted out. We have a Spotify account and we are just getting everything ready and I have to get the confidence and I have to get my head together to do it as well. So that should be fun.

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

Woke up at 4am — not for a cosmic vision, no, just the usual pee pee ritual. And that was that. No sleep. Brain on, pain on, day ruined before it began.

Lemmy said it best: "No sleep 'til Hammersmith." Except I wasn’t heading for rock glory — I was limping toward a garage and a medical breakdown.

No brain fog . Tinnitus mercifully silent — probably saving itself for later. Pain? A knife twisting inside me like Satan’s letter opener.

But still, I had to drive. No meds allowed. NHS says suffer, so I did. Slid out of bed like a cursed slug, wheeled myself to the kitchen, food made it worse (of course), and then the bowel pain — oh the bowel pain.

You know you’ve hit rock bottom when you’re reminiscing about that one time on the NHS table, a camera going places no camera should ever go. We’ll save that horror show for another blog — or perhaps a full-blown gothic novel.

Still, I washed, dressed (miracle), and drove. I was in agony but present. Almost proud. Dropped the van at the new garage — not nasty Jim this time, thank Beelzebub. Just regular, decent humans. A miracle. Almost felt human.

Back in the chair. Felt like I’d been skinned emotionally. Called Albertine “Muriel” — sorry, love. The fog came in hard. Brain barely ticking. But the van passed its MOT — no advisories. So something went right.

Retirement soon. Thank the dark gods. Honestly didn’t think I’d make it this far.

Still here though. Still writing. Still surviving the fire.

          “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.”

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

"The vagus nerve is supposed to keep you alive. Mine seems to have a death wish. Living with MS means living with this burning wire misfiring 24/7.You can't see it. But it's killing me, slowly."

Let me introduce you to the nerve that’s been puppeteering my misery for 40 years:

🧠 The vagus nerve.

Longest cranial nerve in the body. Part of the autonomic nervous system. Runs from the brainstem all the way down into your guts, like a bastard serpent lodged in flesh.

It’s meant to regulate “involuntary” things. Heart rate. Breathing. Digestion. Mood. Inflammation.

Mine regulates suffering.

With MS in the mix, my vagus nerve is like a drunk electrician with a machete and a grudge.

— My heart rate drops so low I black out. — Then shoots so high I think I’m dying. — My diaphragm spasms and I stop breathing mid-sentence. — My throat closes. — My stomach decides to reverse course — vomiting, choking, retching. — Food sits there, like a funeral buffet no one touches.

And the gaslighting begins. “Anxiety.” “Stress.” “Try mindfulness.”

Fuck off. I’m not hyperventilating. I’m being strangled from the inside by a goddamn nerve that's been glitching out since I was a teenager.

I’ve lived four decades like this. Forty years of waking up choking. Forty years of feeling my own body betray me. Forty years of doctors shrugging, guessing, dismissing, or overdosing me on meds for symptoms they don’t understand.

It’s not just discomfort. It’s unrelenting bodily horror.

Imagine being electrocuted through your spine while trying to eat a sandwich. Imagine trying to breathe but your diaphragm spasms like a car crash in your ribs. Imagine shitting yourself with a heart rate of 40 and then vomiting while you go unconscious.

You ever had diaphragmatic myoclonus? That charming thing where your gut convulses so violently you can’t breathe or speak? That’s the vagus nerve on a rampage.

People talk about Vagus Nerve Stimulation like it’s hope in a box. Sure. Stick electrodes in my neck. I’ll try anything once — hell, at this point, if you told me licking a toad would help, I’d be Frenching Kermit by tea time.

I’ve been laughed at. Medicated into a coma. Ignored.

This isn’t just MS. This is autonomic hell.

So yeah — fuck the diagrams and polite educational pamphlets.

My vagus nerve isn’t a calming force. It’s a loaded gun wired to my internal organs.

And some days, I honestly think it’s trying to finish the job.

And yet — here I am. Still alive. Still typing. Still wheezing and swallowing around the broken circuitry that is my body.

You want honesty? This is it.

Welcome to my living hell.

    “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 ✨🧌

Myself and Albertine braved the outside world this morning. It’s been some time since I’ve actually wanted to go out—so naturally, the universe decided to make it weird.

I dragged myself to the WAV. A WAV? Oh, just a terrifying machine of fraud and deception. It’s a van with a ramp. You know, so us wheelchair folk can daringly leave the house. But sure, call the cops. A disabled person going outside must be running a benefits racket.

Albertine, ever observant, pointed out a sad little scene nearby: a VW Transporter clamped and stickered with a huge “NO TAX PAID” label slapped across it like the scarlet letter. I thought, poor bastard—he's not going to have a good day. Judy Tzuke came on the radio, and I promptly drifted off into a cloud of melancholy '80s nostalgia. Classic distraction technique.

We were off early to dodge the traffic. That failed. We ended up 15 miles down the road to drop off a parcel at a UPS pickup point. We had all the paperwork—like law-abiding goblins—but of course, they wouldn't accept it. Apparently, logic has been abolished. Albertine was not amused. Neither was I.

So off we went in search of a broom and some blood, fish and bone (don’t ask). Jim’s store was next—where they usually stock everything including the Ark of the Covenant and possibly a spare Dalek. Staff there? Absolute legends. Cheerful, helpful, and oddly rock-and-roll. I’m convinced the guy who served me was in The Cult.

By this point, the heat was medieval, and my legs started their traditional performance of “Jelly in a Wind Tunnel.” We turned back for home—well, 15 miles back, as you do. I wasn't driving by then. I felt like death but with worse skin.

We spent the journey dodging speed cameras and holiday invaders. Then came the ambulance incident: some driver got scared, panicked at a crossing with one of those traffic bollards, pulled over, and the ambulance ended up overtaking on our side. Straight at us. We’ve got it on dash cam. Lovely.

And then... ah yes. The infamous chemist.

I rolled up to the giant vending machine of doom, typed in my little code, and the robot began its business. Fun fact: My local chemist now has a drug-dispensing robot. It quietly hands out morphine with a beep and a spin. But god forbid I need pain relief—then it’s forms, suspicion, and a full background check. The machine is trusted. I am not.

Anyway, the carousel spun, made strange noises, and then freaked out. Loud grinding, beeping, flashing lights—like R2-D2 on crack. The pharmacist shouted, “You’ve broken my machine!”

I just looked at her. And laughed. Of course I did. The Goblin strikes again.

To round off the day, I had to fork out £325 (no VAT, lucky me!) for a new wheelchair battery—yes, that’s to replace Albertine’s. Still no word from wheelchair services. I’m stuck. I’m pissed off. And this heat can do one.

I’m totally drained—every spoon spent. Now to hydrate, spark a joint, and marvel at how Windows 11 didn’t crash today. Small victories.

Rock star Jim’s guy, if you’re reading this—your secret’s safe.

But seriously—what a bloody day.

     “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 ✨🧌