Multiple sclerosis is My Living Hell

neuropathic pain

All posts tagged neuropathic pain by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ 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.

    My brain fog is crushing. Spasms and weird electric shocks twist through me; words and sentences scramble wrong. The tinnitus that constant, maddening noise won’t quit. Some days I just want to vanish. I watch my rescue dog sleep on the webcam and envy that calm so much it hurts. Everyone offers clichés and advice they’d never follow themselves. It’s exhausting.

    I’ve asked to speak to my doctor again. I don’t know how it’ll go. If my guts blow up over the weekend I’m screwed. The dark thoughts creep in the part of me that imagines ending it and I hate that I think that. I need help. I need someone to actually see this and do something that changes it.

    Right now I’m broken, sore, and furious. I’m still here, still fighting, but not because I want to be brave because I don’t have anything left but stubbornness.

    MS isn’t cancer, but it’s its own kind of killer. It’s not Crohn’s, not ulcerative colitis I’ve had the scans, the cams, the lot. They shoved cameras where the sun don’t shine, took biopsies, waved a cheerful “nothing to worry about,” and sent me home with a sticker that says “reassured.” Fine on paper. Not fine in me.

    Let me be blunt: they sliced into the wrong place. The red patches they found were right where my MS‑riddled nerves were already a mess. They cut, they biopsied, and they left me with nerves that used to hum now screaming in high‑voltage agony. I didn’t get better. I got scorched.

    Picture me on the lavatory, clutching the edges of a stupid toilet that feels like a cliff pain so deep it isn’t even physical in the normal sense. It’s like someone rewired my insides to a broken amplifier and turned the volume to nuclear. Tears, bile, a clear spit‑drip from my mouth I can’t stop as my body fights to keep food down. I hold back vomit with every breath because the world tilts and the noise in my head goes white‑hot. I wish I were anywhere else. I wish I were normal. I wish for a million useless little things.

    The scope was a circus. First prize: the doctor’s finger, the NHS lube, and the ASMR of humiliation. “Your prostate’s fine,” he says, smiling like a man who fixed a leaking tap. That’s the comedy of it they poke, they probe, they make notes, they rule out “nasty” things, then pat you on the head and go home while your nervous system burns.

    Now the aftermath: neuropathic pain that laughs at paracetamol, spasms that feel like electric shocks through my guts and spine, brain fog that scrambles words until typing is a battle with my own brain, tinnitus that keeps me company like a sad little radio, dissociation so deep I sometimes watch someone else live my life. There are moments I cry because the pain and the not‑quite‑rightness of my head make me certain I’m splitting, losing the edges of myself. People hear me say it and step back like I’m contagious with honesty. The more truth I dump, the more people get uncomfortable and that’s lonely in its own corrosive way.

    I can’t sleep properly. I can’t plan. Every day is punctuated by the possibility that my bowels will decide to implode at the worst possible moment. I’ve learned the humiliating art of pre‑emptive management and still get blindsided. I’m on edge all the time jacked into a nervous system that lies constantly.

    And then there are the small, absurd consolations. My rescue dog Yopi decompressing on the webcam, stretching like a champion in her perfect dog‑world while I sit in mine and try not to dissolve. “Doggy wants a big poo,” the universe whispers, and I laugh like a madman because that’s the only way to keep from screaming. I even joke about the vet’s number in my phone because if my guts explode over the weekend, who do I call my vet or the NHS? It’s dark. It’s ridiculous. It’s my life.

    So yes: not cancer. Not “nasty.” Just MS doing what MS does best wrecking the wiring and turning normal procedures into torches. The biopsy didn’t fix anything. It made certain spots of nerve tissue more violent, more reactive, more relentless. That “nothing to worry about” line sits in my records like a bad joke. It doesn’t help me when the nerves scream at night and the world feels like a bad transmission.

    If you think this is melodrama, try living it. Try Googling “neuropathic bowel pain” with one hand while feeding yourself with the other when your head is full of static and your fingers don’t spell the words you mean. Try explaining to someone that the worst part isn’t dying it’s being trapped in a body that betrays you every hour while everyone treats the notes in your file as the whole story.

    I’m not looking for pity. I want acknowledgement. I want the system to stop offering livestock‑level reassurance and actually treat the neuropathic hit the biopsy dealt. I want less suffering. I want some dignity back on the lavvy. I want someone to take seriously that “not cancer” isn’t the same as “not a problem.”

    If that’s too much to ask, fine. I’ll keep shouting here where the noise won’t make anyone uncomfortable. Yopi will keep farting on camera. I’ll keep writing it down. The nerves might scream, but my voice crooked, bitter, and honest is still here.

    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 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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  • Posted on

    ⚠️ 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.

    Time is a drunk clown in cheap shoes doing cartwheels in my skull. Welcome to progressive MS, where your brain hits the brakes mid-thought and your day folds in on itself like a damp deckchair.

    I’ve done the pharma carousel. Twenty to thirty pills a day, side-effects breeding side-effects like horny gremlins, needles for dessert. Result: zombie mode. Chair-bound, fogged, half a human. That’s not medicine. That’s chemical cosplay.

    Then there’s medical cannabis oil and flower basic, honest, grown-in-dirt relief. It doesn’t cure MS (nothing does, spare me the miracle clickbait), but it calms the spasms, dulls the pain, gives sleep a chance, and lets me feel human without the opiate hangover. No “inspirational warrior” bullshit; just reality that works.

    Benefits of Medical Weed (minus the brochure voice)

    Pain Management Chronic pain and gnawing neuropathic nonsense stop chewing through my nerves. No opiate fog, no “what planet am I on?”

    Mental Health Anxiety down, black dog naps. Depends on strain/dose, sure but I’m not staring at the wall planning my own funeral anymore.

    Anti-Inflammatory Less swelling, less misery, less “scream into a cushion.” Crohn’s, RA—people report relief. “Early studies” say promise; my body says thanks.

    Nausea & Appetite Chemo pukes? Weed body-checks them. Appetite returns without force-feeding pills and prayers.

    Neurological CBD has receipts for seizures. For MS: spasms and stiffness throttle back. I can sit without my body re-enacting a mechanical bull.

    Sleep Relaxation shows up, anxiety sods off, and I actually sleep before 4 a.m. Staring at ceilings is not a hobby.

    Benefit What NHS/Pharma Say What Actually Happens (My Reality)
    Pain Management “May reduce discomfort.” Spasms shut the fuck up. Nerve pain finally chills where opiates failed.
    Mental Health “Some report mild improvement.” Anxiety eases, depression loosens. No death-stare at the wall.
    Anti-Inflammatory “Early studies show promise.” Less swelling, less agony, fewer F-bombs per hour.
    Nausea & Appetite “Helps chemo-induced nausea.” Vomitfest canceled; appetite returns without the pill pyramid.
    Neurological “May help seizures/spasticity.” CBD reins in seizures; MS spasms stop playing rodeo.
    Sleep “Improves sleep in some cases.” Real sleep. Not sedated oblivion. Actual rest.

    Progressive MS + Weed: Straight from the trench

    Spasticity: THC/CBD together take the edge off the iron-bar tightness. Oil for baseline, flower for flare-ups.

    Neuropathic pain: The burning/zinging is less murderous. Not gone just not in charge.

    Sleep: Indica-leaning strains knock me down gently. Not a sledgehammer, more a firm hand on the shoulder.

    Mood/anxiety: Calmer. Not blissed, just steadier footing in a tilting room.

    Fatigue: Mixed bag. Some days better, some days couch-glue. Timing + dose matter.

    Cognition: Helps because pain/spasms back off. Too much THC? Hello marshmallow brain. Respect the line.

    What it isn’t

    A cure.

    A halo.

    A licence to hotbox yourself into next week. It’s medicine—treat it like one.

    My takeaway

    I’d rather be a weed-smelling goblin in an electric wheelchair than an NHS-approved opiate zombie. Weed doesn’t fix MS. It makes life with MS bearable. That’s the whole game.

    (Standard sanity note: your body isn’t mine. Talk to a clinician who treats cannabis like medicine, not scandal. Start low, go slow, keep notes, don’t be a hero.)

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

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  • Posted on

    ⚠️ 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.

    enter image description here

  • Posted on

    Some mornings I wake up and my brain feels like it’s been wrapped in clingfilm and slow-cooked in porridge. Other days, it’s like someone’s pushed my thoughts through a shredder and sprinkled the confetti back into my skull.

    They call it “brain fog.” Cute, right? Sounds like a lovely little mist rolling over a field of daisies. Nah — this is industrial-grade psychic smog, pumped in direct from the underworld.

    Now let’s add in some of the bonus features that come with living inside this broken bio-machine:

    My left side is a bloody disaster zone. Spasms, twitching, pain — like it's trying to divorce the rest of me without telling the lawyers.

    My arms are numb. Like holding ghosts. Pins and needles, static shocks, a constant reminder I’m glitching.

    My neck’s buzzing like someone wired it to a phone mast.

    My head? Feels like it’s been blendered. I mean that. Mentally, spiritually, and maybe physically violated by a Nutribullet.

    Tinnitus — so loud it’s practically its own entity. High-pitched screeches like I’m stuck inside a dying TV set from 1993.

    My throat’s raw, like I’ve swallowed sandpaper.

    And my gut? Welcome to the underground pain circus. Nerve pain in the bowels. Left side again, obviously. Feels like my intestines are throwing a rave on broken glass.

    I feel nauseous all the time. Like life itself makes me queasy.

    And my MS just laughs. Because this is the version of me it built. Cheers, you bastard.

    And through all of this? People still expect me to perform like a functioning human being. To smile. To “push through.” To maybe try a walk, or eat kale, or just “think positively.” As if any of that undoes neurological betrayal and raw systemic cruelty.

    Let me say it plainly: This isn’t tiredness. It isn’t laziness. It’s war. A war inside my own body, where my brain is the battlefield and my guts are collateral damage.

    But here's the twist in the tale: I still show up.

    Even when the fog’s choking, the pain is singing, the static is screaming. Even when my body feels like it’s been stitched together with barbed wire and dark humour.

    I write. I speak. I make noise — even if all I can do is whisper.

    Because that’s what warriors do. We don’t always charge into battle — sometimes we just fucking stay alive, and that’s enough.

    So if you’re reading this and you know this hell — I see you.

    You’re not weak. You’re not broken. You’re forged in fire, mate. And somehow, you’re still here.

    Rock on, Life. Rock on, Hell. Let’s fucking go.

                    !!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.”
    

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          @goblinbloggeruk  -  sick@mylivinghell.co.uk