Multiple sclerosis is My Living Hell

The weird eccentric ramblings of a multiple sclerosis sufferer

The mishaps and weird stuff that just seem to happen in my own personal world of cognitive disfuction and other worldly weirdness throughout my life, a spiritual awakening staring multiple scelrosis and death in the face... 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.
  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    A very good afternoon to you, whoever you are, wherever you’re from—whether it’s Mars, ancient Tartaria, or just your local pub. I hope your weekend is less chaotic than mine.

    The Finger That Came Back (And Other Small Miracles)

    Albertine’s finger, which was dramatically removed and then just as dramatically returned by the NHS, is now looking remarkably good like it never left at all. A true medical miracle! We’re down one person in the household due to this ordeal, meaning I’m now single-handedly responsible for keeping everything from collapsing into chaos a task that requires both Herculean effort and a healthy dose of dark humour.

    The 4-Wheel Scooter of Death (Still in the Garage, Thankfully)

    My new mobility scooter dubbed the 4-wheel scooter of death remains safely locked away in the garage. I refuse to unleash it upon the world after its near-fatal roundabout incident.

    Accelerates like a runaway train Cuts out at crucial moments (like, say, when you’re about to get hit by a bus) Jerked me home with no power, leaving me questioning my life choices I’ve sent at least three emails (possibly five) to the company that sold it to me, and not a single response. This suggests either:

    They’re aware of the design flaws but don’t care. My emails are being filtered out as spam (which, given their quality, is entirely plausible). They’ve already written my obituary. Either way, I’m now forced to use the 3-wheel trolley of death—a device that last year attempted to throw me under a bus. Cheap scooters: not fit for purpose.

    The UK’s Mobility Scooter Problem (Or: Why Can’t We Have Electric Cars That Actually Work?)

    I remember the old blue mobility cars reliable, sturdy, and built to last. Now? We get these flimsy, half-baked electric scooters that are basically death traps.

    Why can’t we have small, fast, reliable electric vehicles? They exist in China! Why not here?

    The government is pushing us toward electric everything except for the things disabled people actually need. Where’s my 30-40 mph electric car? I don’t care if it runs on petrol, diesel, or even bullshit—just give me something that doesn’t try to kill me.

    The Electrical Storm in My Brain (Or: Why I Look Like a Mad Scientist)

    I was supposed to go to the market today, but I’m not feeling well. Brain fog, stress, and that weird electrical storm sensation the kind of feeling you can’t describe unless you’ve experienced it yourself.

    Looking in the mirror at 67, with my hair falling out faster than a bald eagle in a hurricane, I find it amusing (in a deeply cynical way). Life’s choices, eh?

    A New Project: The MS Podcast (Or: Why We Need More Dark Humour)

    I’ve been asked to help with a podcast about multiple sclerosis a place where people can ask questions and hear from those of us living this neurological adventure first-hand. Dark humour is the only thing keeping me going.

    My brain feels like a bowl of mush being stirred by a spoon, and my mental faculties are… questionable. But hey, at least I have something to write about.

    What Would an Borg Think of This?)

    An Borg, observing this post, might conclude:

    "Subject exhibits signs of neurological dysfunction coupled with an apparent fascination for mobility devices that actively attempt to injure them. Recommendation: Observe from a safe distance." "Human humour is inefficient but effective. Sarcasm detected at 98%. Probability of dark comedy success: 100%."

    Final Thoughts (Or: Why I’m Still Here)

    I send all readers whether you’re human, interdimensional, or from ancient Tataria peace, healing, love, and light (even if it’s refracted through layers of sarcasm).

    If you are from another dimension, drop me a line. A neurologically challenged man like myself would love to hear your perspective.

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to help solve this issue so you can understand it lol

    Will He Fly Again?

    Multiple Sclerosis, False Hope and the Fine Art of Pretending Everything Will Be Fine

    He grins, teeth chattering.

    Not a cheerful grin.

    Not the sort found in toothpaste adverts, family photographs or those irritating hospital leaflets where everyone appears delighted to have a chronic neurological disease.

    This is the grin of someone whose body has misplaced the instruction manual.

    It echoes through the hollow silence while weak lights flicker overhead, scrubbing unsuccessfully at the final stain of faith.

    Second chances?

    Of course.

    They are probably waiting in the same cupboard as the cure, the reliable bladder and the eight uninterrupted hours of sleep.

    Nobody can find the key.

    When the Music Stops

    A guitar plays somewhere in the darkness.

    The notes arrive bent, exhausted and slightly dishonest.

    False harmony for a false dawn.

    He sits alone in the stillness, surrounded by the remains of everything that was supposed to happen next.

    Plans.

    Journeys.

    Ordinary mornings.

    The ability to stand up without first negotiating with several uncooperative limbs and a nervous system apparently being operated by a drunk electrician.

    The silence becomes suffocating.

    Every reflection is heavier than the last.

    Every mirror offers a slightly different version of the same unwanted truth.

    Multiple Sclerosis has moved in.

    It has not paid rent.

    It has rearranged the furniture, smashed several windows and now complains that the heating is inadequate.

    The Delusion Department

    She paints his illness in the bright colours of hope.

    Not because she is foolish.

    Because sometimes hope is the only paint left in the tin.

    She tells herself he is strong.

    He will improve.

    He will adapt.

    Something new will be discovered.

    A treatment will work.

    A specialist will finally say the words everyone is waiting to hear:

    “We have fixed it.”

    The specialist does not say this.

    The specialist says things like:

    “Disease progression.”

    “Symptom management.”

    “We’ll monitor the situation.”

    Which is medical language for:

    “We also have no bloody idea what happens next.”

    Still, she clings to the images.

    The wishes.

    The whispered promises.

    He’ll get better.

    Ignore the scans.

    Ignore the lesions.

    Ignore the doctor’s carefully practised expression when the results appear on the screen.

    Ignore the cold weight of the diagnosis.

    Multiple Sclerosis.

    Two words.

    One lifetime rearranged.

    Everyone Suffers, Apparently

    There will always be someone eager to offer perspective.

    “Everyone has problems.”

    “Just take one day at a time.”

    “Try to stay positive.”

    “My neighbour’s cousin had something similar and she cured it by removing dairy.”

    Wonderful.

    The nervous system has been informed.

    It regrets the misunderstanding and promises to remyelinate immediately.

    Pain is universal, they say.

    That may be true.

    But some pain arrives, makes a cup of tea and leaves.

    Other pain changes its address to yours, redirects its post and starts answering the telephone.

    Mourning the past becomes almost impossible because the past refuses to remain politely buried.

    It appears in photographs.

    In old shoes.

    In abandoned hobbies.

    In the memory of walking without calculating every step.

    Her fear begins to sing.

    Not beautifully.

    It sounds like old trees creaking in a winter storm.

    Branches twisting.

    Roots straining.

    A whole forest holding its breath while something unseen decides what to take next.

    Prayers and Other Failed Treatments

    In time, he responds with prayers.

    Some are spoken.

    Some are thought.

    Some are little more than exhausted bargaining directed at a ceiling that offers no comment.

    Prayer is strange when illness becomes permanent.

    You begin politely.

    Then desperately.

    Then angrily.

    Eventually, you stop asking for a miracle and start asking for one tolerable afternoon.

    The dread spreads slowly.

    Like rot inside an apparently healthy tree.

    From the outside, everything still looks solid.

    The leaves remain.

    The bark holds.

    People walk past and say:

    “You look well.”

    Inside, the branches are weakening.

    The muscles tremble beneath invisible storms.

    Each flare exposes another fragile limb.

    Another ache.

    Another part of life that can no longer be trusted.

    Guilt follows close behind.

    The guilt of needing help.

    The guilt of cancelling plans.

    The guilt of being tired.

    The guilt of watching someone you love become tired because you are tired.

    A wonderfully efficient system.

    Multiple Sclerosis attacks the body, then sends guilt along to finish the paperwork.

    Waiting for Healing

    The limbs listen but do not always obey.

    They lie quietly beneath blankets, pretending they may cooperate tomorrow.

    Sometimes they do.

    Sometimes they stage a full industrial dispute without warning.

    There are risks taken for the smallest hope of healing.

    New medication.

    Different medication.

    Higher doses.

    Lower doses.

    More appointments.

    More scans.

    More leaflets featuring suspiciously cheerful people walking through sunlit fields.

    Every treatment carries a possibility.

    Every possibility carries side effects.

    The patient becomes a laboratory with a National Insurance number.

    A little less pain, perhaps.

    A little more dizziness.

    Fewer spasms.

    More fatigue.

    Better movement.

    Worse sleep.

    Medicine gives with one hand and occasionally clubs you over the head with the other.

    Still, you try.

    Because the alternative is doing nothing.

    And doing nothing comes with side effects too.

    The Silence That Burns

    Will the disease reveal her fears?

    It already has.

    Her tears?

    Those too.

    Silence does not fade.

    It burns.

    It consumes the memories of a time when worries were ordinary and therefore almost luxurious.

    Bills.

    Work.

    Traffic.

    The weather.

    The sort of problems one would now happily welcome back with flowers and a small buffet.

    Those earlier worries have become distant dreams.

    They echo beneath broken wings as he falls.

    Not majestically.

    Not symbolically.

    Usually beside the bed while attempting to put on trousers.

    There is rarely anything poetic about losing balance.

    The floor does not care about metaphors.

    For a while, he believes no grace is needed.

    He can manage.

    He can cope.

    He can force the body to obey through willpower, determination and the ancient British medical practice of refusing to make a fuss.

    It works magnificently.

    Until it doesn’t.

    Will He Fly Again?

    Will he fly again?

    Possibly not in the way he once did.

    Will he know victory?

    That depends upon what victory means.

    Walking unaided?

    Living without pain?

    Returning to the person he was before diagnosis?

    Those victories may never arrive.

    That is the truth nobody enjoys printing on an inspirational mug.

    There may be no full recovery.

    No cinematic ending.

    No miraculous final scene where he rises from the chair as the music swells and everyone applauds.

    Real life is usually less considerate.

    Perhaps victory is getting out of bed.

    Perhaps it is laughing at the disease before it can laugh at you.

    Perhaps it is writing down the darkness and making it useful.

    Perhaps it is surviving another day without pretending the day was beautiful.

    One tear blinds her heart as his body vibrates with uncertainty.

    He is not too cowardly to face the truth.

    He is simply exhausted from having to face it every morning.

    There may be no recovery.

    But there is still life.

    Damaged, altered, infuriating life.

    Life with medication boxes, mobility aids, bladder negotiations, forgotten words and bodies that behave like disgruntled civil servants.

    It is not the life they ordered.

    There was no receipt.

    The returns department has closed.

    So they remain.

    Not soaring.

    Not cured.

    Not pretending.

    Still here.

    And some days, against all reasonable expectations, that is victory enough.

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    "The Different Types of MS: Relapsing-Remitting, Primary Progressive, and More"

    (Or, "How to Lose at Life While Losing Your Nervous System")

    Introduction: Welcome to the MS Lottery

    Congratulations! You’ve just won a lifetime supply of neurological chaos, served with a side of uncertainty. Multiple sclerosis (MS) isn’t one-size-fits-all—it’s more like a choose-your-own-adventure book where every path leads to "I hope this isn’t me."

    Whether you’re here because you’ve just been diagnosed, you know someone who has it, or you’re just morbidly curious about how the brain can betray you, this is your no-BS guide to the different types of MS. Spoiler alert: None of them are fun.

    1. Relapsing-Remitting MS (RRMS)

    The "On Again, Off Again" Special (Affects ~85% of people at diagnosis—lucky you!)

    What It Is:

    You get symptom flare-ups (relapses) that come out of nowhere, followed by periods where you pretend nothing happened (remissions). It’s like your brain is playing a game of "Hot Potato: Nervous System Edition."

    Key Features

    ✔ Relapses: New or worsening symptoms (numbness, vision problems, fatigue—classic MS moves).

    ✔ Remissions: Symptoms improve partially or completely. Congrats! You’re back to normal… for now.

    ✔ Early symptoms: Optic neuritis (your eye decides to go rogue), tingling in your limbs, balance issues.

    Progression Over Time:

    Some people stay stable for years (lucky bastards). Others transition to Secondary Progressive MS (SPMS), where things start getting less fun. Visual Idea: A graph showing relapse-remission cycles with the caption "Your brain’s way of saying ‘I’m still here, but barely.’"

    2. Secondary Progressive MS (SPMS)

    The "Slow Burn" Edition (Affects ~69% of PwMS within 25 years—because why not?)

    What It Is:

    You start as RRMS, but then your brain decides "Screw it, I’m doing this the hard way." Symptoms worsen steadily, and remissions become a distant memory.

    Key Features:

    ✔ No more full recoveries. Relapses might still happen, but they don’t go away.

    ✔ Symptoms accumulate like a debt you can’t pay off.

    ✔ Common later-stage symptoms: Mobility issues (walking becomes a metaphorical and literal challenge), cognitive decline, bladder/bowel problems.

    "From ‘I can still walk’ to ‘Please help me.’"

    3. Primary Progressive MS (PPMS)

    The "No Breaks, Just Suffering" Track (Affects ~10–15% of PwMS—because variety is the spice of life.)

    What It Is:

    You get progressive disability from the start, with no relapses or remissions. It’s like your brain is on a one-way ticket to "I can’t do that anymore."

    Key Features:

    ✔ No early relapses—just steady decline.

    ✔ Common symptoms: Spasticity (your muscles decide they hate you), fatigue (because why not?), cognitive changes.

    ✔ Slower progression than SPMS, but still a slow-motion disaster.

    4. Clinically Isolated Syndrome (CIS)

    The "Maybe It’s MS, Maybe Not" Phase (Early-stage MS or a one-time episode—because life loves uncertainty.)

    What It Is:

    You have one neurological symptom that could be MS but isn’t yet confirmed. It’s like your brain is flirting with the idea of betraying you.

    Key Features:

    ✔ Single relapse, no prior MS diagnosis.

    ✔ MRI may show lesions (plaques) in your brain or spinal cord.

    5. Radiologically Isolated Syndrome (RIS)

    The "My Brain Has Lesions, But I’m Fine" Phase (Preclinical MS—because why not start early?)

    What It Is:

    You have MS-like lesions on MRI but no symptoms yet. It’s like your brain is quietly sabotaging itself behind the scenes.

    Key Features:

    ✔ No neurological symptoms (yet).

    ✔ Monitored closely for progression.

    6. Other Rare Forms Because MS Loves Variety

    Relapsing-Progressive MS (RPMS): Relapses + steady worsening (the worst of both worlds). Progressive-Relapsing MS (PRMS): Rare, but if you get this, congrats, you’re a unicorn. How Is MS Diagnosed? (Spoiler: It’s a Pain) (Briefly cover diagnostic criteria—McDonald’s Criteria, MRI, spinal fluid tests, etc.)

    What Does This Mean for Treatment?

    (Spoiler: It’s a Work in Progress)

    RRMS & SPMS: Often treated with disease-modifying therapies (DMTs)—because why not try to slow things down? PPMS: Some DMTs are approved specifically for PPMS (hope springs eternal). CIS/RIS: Monitored closely, but some may start treatment early if they’re high-risk. Visual Idea: A table comparing treatment options with the caption "Your brain’s ‘I’ll try to behave’ phase."

    Living with Different Types of MS

    (Or, "How to Not Lose Your Mind")

    For RRMS: Manage relapses (steroids are your friend). Track symptoms between flare-ups (because denial is a river in Egypt). For PPMS/SPMS: Adaptive strategies for mobility/cognition (because walking is overrated). Emotional support (because losing your ability to walk is hard). "I used to walk, now I’m a human wheelchair—thanks, MS."

    Key Takeaways

    (Or, "Things You’ll Learn the Hard Way")

    MS isn’t one-size-fits-all—it’s more like a buffet of suffering. Early diagnosis is crucial, even if you’re asymptomatic (yet). Treatment options vary, so work closely with your neurologist (or cry into their shoulder). Support groups and advocacy can help you navigate this mess.

    Final Thought:

    Dark Humour is a Coping Mechanism MS is a real, debilitating condition, but laughing about it helps. Whether you’re dealing with relapses, progressive disability, or just the daily grind of living with a chronic illness, you’re not alone.

    peace healing love and light to all the readers of this blog

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    A raw, darkly funny and unapologetically personal take on living with Multiple Sclerosis. Symptoms, fatigue, mobility, brain fog and the absurdity of everyday MS life.

    Chapter One: Congratulations, You've Been Promoted to Professional Liability

    Welcome to the blog.

    If you're reading this, chances are you've either been diagnosed with Multiple Sclerosis, know somebody who has, or you've accidentally wandered in while looking for recipes.

    If it's the latter, the Yorkshire pudding recipe is in another universe.

    For the rest of us...

    Welcome to the club that nobody wanted to join.

    Membership benefits include:

    • Randomly falling over for no obvious reason.
    • Forgetting what you walked into a room for.
    • Being permanently exhausted despite achieving absolutely nothing.
    • Discovering that your own immune system has become your full-time stalker.

    There are no loyalty points.

    There is, however, a lifetime supply of unsolicited advice.


    Rule Number One

    The first thing you'll discover is that everyone suddenly becomes a neurologist.

    Your neighbour recommends turmeric.

    Your aunt swears by celery juice.

    Some bloke on Facebook says crystals cured his cousin's hamster, so clearly they'll repair your spinal cord.

    Smile politely.

    Then continue taking the medication invented by people who actually went to medical school.


    Rule Number Two

    Never Waste Good Symptoms

    MS is incredibly creative.

    One day your leg works.

    The next day it's merely decorative.

    Sometimes your hand forgets it's attached to you.

    Occasionally your tongue joins a witness protection programme.

    Enjoy the mystery.

    It's like opening an advent calendar designed by Satan.

    You never know what's behind today's little door.


    Rule Number Three

    Accept That Your Brain Runs on Rural Broadband

    People ask...

    "What's wrong?"

    Nothing.

    I'm simply waiting for Windows 98 to finish loading.

    My thoughts are arriving one packet at a time.

    Estimated completion...

    Three to five working days.


    Rule Number Four

    Master the Ancient Art of Looking Fine

    You'll hear this sentence approximately 47,000 times.

    "But you look so well!"

    Thank you.

    You also look like someone who hasn't just fought their own nervous system before breakfast.

    Appearances can be deceptive.

    Like politicians.

    Or supermarket sandwiches.


    Rule Number Five

    Become One With Furniture

    Experienced MS sufferers know every bench within a five-mile radius.

    You don't choose routes by scenery.

    You choose them by available seating.

    That suspicious-looking wall outside the chemist?

    Luxury.


    Rule Number Six

    Your Mobility Scooter is Now a Mythical Beast

    This isn't a mobility scooter.

    It's a steel horse.

    A dragon with indicators.

    A noble mechanical steed that bravely carries you into battle...

    ...at a legally restricted 8 mph.

    The Hells Angels nod respectfully.

    Mostly because you've blocked the pavement.


    Rule Number Seven

    Never Trust a Good Day

    A good day is wonderful.

    It is also suspicious.

    Don't ask questions.

    Simply enjoy it while your nervous system isn't paying attention.

    Tomorrow it may remember you're having fun.


    Final Advice

    People often apologise because they don't know what to say.

    Don't worry.

    Neither do we.

    We forget halfway through the sentence anyway.

    If there's one thing MS teaches you, it's that life doesn't always make sense.

    So laugh anyway.

    Laugh because the disease hates it.

    Laugh because the alternative is giving it all the best lines.

    And if your legs refuse to cooperate...

    At least your sense of humour still knows where it's going.

    Probably.

    wishing everyone peace healing love and light

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    Dear Past Me: Here’s What MS Will Actually Be Like

    Dear Past Me,

    Sit down.

    Actually, enjoy being able to do that without calculating whether you'll be able to get back up again.

    We need to talk.

    You're going to hear two words:

    Multiple Sclerosis.

    And you're going to be frightened.

    You're going to imagine wheelchairs.

    You're going to imagine hospitals.

    You're going to Google things you absolutely should not Google at two o'clock in the morning.

    But here's what nobody will properly explain.

    MS won't simply be one enormous dramatic thing.

    It will be thousands of tiny ridiculous things.

    So I'm writing from the future with some useful information.

    You're welcome.


    YOU THINK FATIGUE MEANS “TIRED”

    Oh, sweet summer child.

    You think tired means:

    "I could do with an early night."

    That's adorable.

    MS fatigue is more like somebody has quietly removed your batteries, filled your bloodstream with concrete and increased Earth's gravity by approximately 300%.

    You can wake up tired.

    You can become tired from showering.

    You can become tired from getting dressed.

    You can even become tired from resting because apparently resting is now an activity.

    People will suggest getting more sleep.

    Try not to kill them.


    YOU'RE GOING TO FORGET WORDS

    Not complicated words.

    Not photosynthesis or existentialism.

    Normal words.

    Spoon.

    One day you'll be standing in the kitchen saying:

    "Where's the... you know... food shovel?"

    And the terrifying thing is that you'll know exactly what the object is.

    Your brain simply won't provide the label.

    You'll eventually become fluent in a new language called:

    THINGY.


    YOUR BODY WILL BECOME A HAUNTED HOUSE

    Random pain.

    Buzzing.

    Burning.

    Tingling.

    Numbness.

    Electric shocks.

    Muscles moving without permission.

    Parts of you feeling freezing when they're warm.

    Other parts feeling like they're on fire when they're not.

    You'll eventually stop saying:

    "What the hell was that?"

    You'll just say:

    “MS.”

    It's quicker.


    YOUR BLADDER WILL BETRAY YOU

    Remember when needing the toilet was merely a suggestion?

    Enjoy that memory.

    Future bladder communication will occasionally resemble:

    YOU HAVE FOUR SECONDS.

    You will develop an extraordinary superpower.

    Whenever you enter an unfamiliar building you will immediately locate:

    1. The toilet.
    2. The route to the toilet.
    3. Obstacles between yourself and the toilet.
    4. Potential witnesses should the mission fail.

    Jason Bourne has nothing on you.


    PEOPLE WILL SAY ASTONISHINGLY STUPID THINGS

    "But you look fine."

    "Everyone gets tired."

    "Have you tried yoga?"

    "Maybe you need to think positively."

    You'll discover that chronic illness apparently grants random strangers honorary medical degrees.

    Do not worry.

    Eventually your sarcasm becomes extremely efficient.


    YOU WILL GRIEVE

    This bit isn't funny.

    There will be times when you miss the old you.

    The person who could simply decide to do something and then...

    do it.

    Without calculating energy.

    Without planning toilets.

    Without wondering whether the legs will cooperate.

    Without needing recovery time afterwards.

    You'll grieve abilities.

    Plans.

    Freedom.

    Spontaneity.

    Parts of your old identity.

    And that's alright.

    Because grief doesn't mean you've surrendered.

    It means something mattered.


    BUT SOMETHING ELSE WILL HAPPEN

    You'll change.

    Not into one of those inspirational poster people standing heroically on a mountain at sunset.

    Fuck that.

    You'll become stranger.

    Darker.

    Funnier.

    More adaptable.

    You'll learn that independence doesn't necessarily mean doing everything without help.

    You'll learn that mobility aids aren't surrender.

    You'll learn that cancelling plans isn't a moral failure.

    You'll discover people who understand without needing the entire bloody explanation.

    You'll become remarkably good at finding humour in situations that objectively shouldn't be funny. Because sometimes the choice really is:

    Laugh.

    Cry.

    Or do both while desperately searching for the nearest accessible toilet.


    YOU WILL STILL BE YOU

    This is the part I wish somebody had told us.

    MS will change things.

    Some changes will be small.

    Some may be enormous.

    But diagnosis doesn't suddenly erase the person underneath.

    You're still going to laugh.

    Still swear.

    Still love.

    Still get angry.

    Still make terrible decisions.

    Still have ridiculous ideas.

    Still find things beautiful.

    Still be interested in things that have absolutely nothing to do with Multiple Sclerosis.

    You aren't going to become MS: The Person.

    You're still you.

    Just with considerably more neurological bullshit.


    So, Past Me...

    When those words finally arrive, you're allowed to be frightened.

    You're allowed to be furious.

    You're allowed to grieve.

    But don't assume the story ends there.

    It doesn't.

    It simply becomes a much stranger book.

    And one day you'll discover something nobody mentioned at diagnosis:

    You can take something utterly shit and still laugh directly in its face.

    Love,

    Future You

    (Still here. Still fighting. Still swearing.)

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    Good afternoon, readers—yes, I did suffer a real time slip event in Bideford. In fact, several in North Devon and Cornwall over the years of living there. Even saw a few big black triangles seemingly hovering over the bay near where we once lived.

    This is a tongue-in-cheek version—some real, some not—but the core experience? Absolutely valid. The universe has a darkly humorous sense of humour, and it loves to mess with you when you least expect it.

    The Long Bridge: Where the Past is a Jerk

    Let’s set the scene. You’re in Bideford, a charming little town where the river runs black (because of course it does this place doesn’t do "normal"), and the moonlight plays tricks on your eyes. You cross the Long Bridge, expecting a pleasant stroll, maybe a ghost tour, maybe just the sound of your own existential dread echoing back at you.

    But no. The past here isn’t just there it’s active. It’s like the universe’s way of saying, "Oh, you wanted history? Here, have a whole century uninvited."

    The Rules (According to the Universe)

    1. Don’t Look Left or Right – Because if you do, you’ll see things that shouldn’t be there. Like a man in Victorian clothes standing where there was definitely a doorway five seconds ago.
    2. Ghost Tours Are Optional – If you sign up for one, expect the guide to suddenly realize they’re not alone. "That’s impossible," they’ll say, while some stranger in 19th-century garb tips his hat and vanishes like a bad Wi-Fi signal.
    3. The River Runs Backwards (Or You Do) – Because why should time flow logically when you could be standing on the bridge arguing with a man who claims you’re the ghost?

    A Personal Account of Time-Slip Madness

    I was there once. A ghost tour started at half past eight, and I followed the guide like a good little tourist. Then—poof—there were three of us. One with a lantern (very dramatic), one with a phone (very 2023), and one just standing there, waiting to go home.

    The guide? Panicking. "That’s impossible."

    The stranger? Smiling. "Not according to the bus."

    And then because the universe loves irony the fog rolled in, and nobody was there.

    The River Knows Your Name

    At some point, you’ll hear bells. Not church bells. Midnight bells. At 11:30 AM.

    You’ll see a horse clattering past while cars zoom by, because of course they do—this place doesn’t respect traffic laws either.

    And then, just when you think it can’t get weirder, some guy in Victorian clothes will stare at you like you’re the one who’s out of place. "Sir, you’ve been standing there since 1892," he’ll say, before vanishing beneath the bridge.

    Final Thoughts (Or Lack Thereof)

    If you ever find yourself on the Long Bridge, ask yourself: Do I want to see the past?

    The answer is probably no. But if you do, just remember—don’t wave back.

    Because if they wave first… well. That’s when you know.

    You’ve crossed over.

    Or they have.

    Either way, you’re screwed.

    For the Paranormally Curious

    "I’m on the Long Bridge in Bideford, and I think I’ve slipped into 1892. What do I do?" Ah, so you’ve finally noticed the time slip? Congratulations, you’re now a main character in North Devon’s most underrated horror story.*

    Here’s what to do: 1. Don’t panic. The universe doesn’t like drama. 2. Check your pockets. If you find a pocket watch, it’s either a cool souvenir or proof you’ve been possessed by a Victorian ghost. (Spoiler: It’s the latter.) 3. Ask for directions. If someone in 19th-century clothes stares at you, just smile and say, "Lovely weather we’re having." Then run. 4. If all else fails, blame the bus. (Works every time.)

    Final Note: If you ever find yourself on the Long Bridge, just rememberthe past is watching you. And it’s laughing.

    (Or maybe that’s just me. Either way, I’m not alone in this.)

    sending all readers of the blog peace healing love and light

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    well as I post this I am suffering with a stress attack with brain fog,and my autonomic dysfunction is strangling me making it harder to breathe looking like the nxt few days are going to be a bit unpleasant.. still remember to hydrate and not to over do things like I have and am really paying for it now due to me not taking my own advice still things have to be done until I cant any more physically and mentally as I slide deeper into this progressive ms but that’s life

    Because apparently losing control of your nervous system wasn’t humiliating enough

    Multiple Sclerosis is many things.

    It is painful. Exhausting. Frustrating. Unpredictable. Occasionally terrifying.

    It is also, and nobody puts this bit on the cheerful NHS leaflet, spectacularly fucking embarrassing.

    MS doesn't merely attack your nervous system. Oh no. That would be far too straightforward.

    It waits.

    It studies you.

    It learns precisely which remaining scrap of dignity you still possess...

    ...and then kicks it down a flight of stairs while you piss yourself trying to remember what a staircase is called.

    Welcome to another glamorous day with Multiple Sclerosis.

    Here are 20 of the most embarrassing things MS can throw at you.

    And before somebody sends me a strongly worded email: yes, these things are serious. Bladder dysfunction, bowel problems, cognitive impairment, tremor, mobility problems and spasms can have a massive effect on somebody's life.

    Sometimes laughing at the bastard is how we survive it.

    1. The Emergency Toilet Sprint

    Your bladder sends an urgent neurological telegram:

    TOILET. NOW.

    Unfortunately, your legs received a completely different message:

    We’ll get back to you within three to five working days.

    So begins the world's slowest emergency sprint.

    You can see the toilet.

    The toilet can see you.

    There are twelve feet between you.

    It may as well be fucking Everest.

    2. Pissing Yourself in Public

    There isn't really an elegant way of describing this one.

    Sometimes MS means you don't make it.

    You can plan routes around toilets, restrict drinks, wear protection, know every accessible loo within a twenty-mile radius and still occasionally discover that your bladder has declared itself an independent republic.

    And nothing restores your dignity quite like standing in public thinking:

    Well. That's wet.

    3. The Fart of Uncertain Intentions

    For most people, passing wind is a fairly straightforward administrative procedure.

    With dodgy sensation and bowel problems, however, every fart becomes a high-stakes negotiation.

    You think:

    "Probably safe."

    Your bowel replies:

    "Interesting theory."

    And suddenly you're gambling with odds that would get a casino investigated.

    Never trust a fart when your nervous system is being operated by drunk electricians.

    4. Walking Like You've Drunk Twelve Pints While Completely Sober

    There you are at ten o'clock in the morning, staggering down the pavement like you've spent the night drinking industrial quantities of whisky.

    You haven't.

    You're completely sober.

    Your balance just happens to resemble that of a pirate walking across a trampoline during an earthquake.

    The looks from strangers are particularly charming.

    You sometimes want a T-shirt saying:

    I'M NOT PISSED. MY BRAIN HAS JUST LOST CONTACT WITH MY LEGS.

    5. Falling Over Absolutely Nothing

    No ice.

    No kerb.

    No loose paving slab.

    No small child with a tripwire.

    Nothing.

    One second you're standing upright.

    The next you're examining the carpet at extremely close range.

    Someone inevitably asks:

    "What did you trip over?"

    My central nervous system, apparently.

    6. The Wall Bounce

    Why simply walk through a doorway when you can enter it like a pinball?

    Left shoulder.

    Right shoulder.

    Door frame.

    Cupboard.

    Possibly the dog.

    Eventually you arrive in the next room looking as though you've just escaped a pub fight.

    Technically, you successfully walked ten feet.

    Achievement unlocked.

    7. Missing the Chair

    You have been sitting down successfully for most of your life.

    It isn't a new skill.

    You understand the basic concept.

    Chair behind bottom.

    Bottom goes down.

    Civilisation has relied upon this technology for centuries.

    Then MS gets involved.

    Suddenly sitting down requires trajectory calculations normally performed by NASA.

    And occasionally...

    you miss.

    8. Dropping Absolutely Everything

    Phone.

    Keys.

    Fork.

    Remote.

    Cup.

    Pen.

    Medication.

    The thing you've just spent twenty minutes looking for.

    There comes a point where you stop picking things up immediately because experience has taught you that you'll probably drop the bastard again.

    Eventually the floor becomes a secondary storage system.

    9. The Fork-to-Mouth Navigation Failure

    The objective is simple:

    Move food approximately twelve inches from plate to mouth.

    Unfortunately your nervous system has decided this requires experimental choreography.

    Food goes onto your shirt.

    Onto your cheek.

    Onto the table.

    Possibly into your hair.

    Your mouth sits patiently nearby wondering why nobody invited it.

    Fine dining with MS.

    Michelin would be appalled.

    10. The Brain-Fog Conversation Crash

    You are halfway through a perfectly intelligent sentence.

    You know exactly what you're talking about.

    Then...

    Nothing.

    The thought has vanished.

    Not hidden.

    Not temporarily misplaced.

    Deleted.

    The other person waits.

    You wait.

    Your brain displays the neurological equivalent of:

    404 — THOUGHT NOT FOUND

    Eventually you say:

    "I've forgotten what I was saying."

    They helpfully reply:

    "You were talking about—"

    YES, THANK YOU, I KNOW I WAS TALKING.

    THAT'S THE PROBLEM.

    11. Forgetting the Name of Someone You've Known for Twenty Years

    You recognise their face.

    You know where they live.

    You know their partner.

    You've been to their wedding.

    You may even know their dog's birthday.

    Their name?

    Gone.

    So suddenly everybody becomes:

    "Mate."

    "Love."

    "Hello... you."

    Nothing suspicious about that whatsoever.

    12. Using Completely the Wrong Word

    "Pass me the... food shovel."

    "The what?"

    "The silver thing."

    "A spoon?"

    "YES. THE FUCKING SPOON."

    Brain fog doesn't necessarily remove the concept.

    Sometimes it merely removes the perfectly ordinary word describing it.

    So your house becomes filled with exciting new objects such as:

    The clothes washing box.

    The cold cupboard.

    The television changer.

    The foot gloves.

    And the thingy.

    Especially the thingy.

    13. The Leg That Resigns Without Notice

    Everything is going surprisingly well.

    Left leg working.

    Right leg working.

    Walking happening.

    Excellent.

    Then one leg suddenly announces:

    I no longer recognise the authority of the brain.

    It drags.

    It buckles.

    It stops.

    Or it wanders somewhere you hadn't intended.

    Apparently collective bargaining has reached the spinal cord.

    14. Getting Trapped in Your Own Clothes

    Putting trousers on should not require strategic planning.

    But when balance, weakness, stiffness or coordination are having a bad day, getting dressed becomes an escape room in reverse.

    One trouser leg twists.

    Your foot disappears.

    You lose your balance.

    Now you're hopping.

    Hopping was a mistake.

    Eventually you're lying sideways on the bed wearing one sock and quietly threatening a pair of jeans.

    15. The Public Tremor Performance

    You are carrying a cup of coffee.

    The cup is full.

    People are watching.

    Your hand suddenly decides it has always dreamed of becoming a cocktail shaker.

    Coffee begins performing orbital manoeuvres around the rim.

    You stare at it.

    Everyone else stares at it.

    You attempt to walk very carefully.

    This naturally makes everything worse.

    By the time you sit down, you've transported approximately 40% of the coffee.

    The rest is decorating the route.

    16. Being Defeated by a Sofa

    You sat down.

    This was your first mistake.

    Twenty minutes later you decide to stand.

    Your legs disagree.

    So begins the launch procedure.

    Rock forward.

    Rock back.

    Forward.

    Back.

    Forward again.

    Hands on knees.

    Push.

    Nothing.

    Reposition.

    Make strange noise.

    Try again.

    Eventually you achieve verticality with the elegance of a newborn giraffe being fired from a trebuchet.

    17. When MS Invites Itself Into Your Sex Life

    Nobody puts this in the glossy information leaflet either.

    Numbness.

    Altered sensation.

    Spasms.

    Pain.

    Fatigue.

    Weakness.

    Bladder urgency.

    Parts of your anatomy apparently working to completely different timetables.

    Romance can occasionally become less:

    Fifty Shades of Grey

    and more:

    Could you move my leg? It's gone numb and I need a piss.

    Sexy.

    Very sexy indeed.

    18. The Sudden Spasm

    Your body suddenly jerks.

    You didn't request it.

    You didn't approve it.

    You weren't consulted.

    MS has simply activated the random movement generator.

    Naturally this often happens at precisely the moment you'd prefer to appear calm and normal.

    Your body:

    SURPRISE!


    19. The Scooter or Wheelchair Manoeuvre of Shame

    Mobility equipment gives independence.

    It can also provide opportunities for spectacular mechanical humiliation.

    Doorways become narrower.

    Shop displays become magnetic.

    Furniture develops suicidal tendencies.

    You misjudge a corner.

    Clip something.

    Reverse.

    Clip something else.

    Reverse again.

    Now six people are watching.

    At this point there is only one sensible course of action.

    Pretend the entire manoeuvre was deliberate.

    Professional driver.

    Obviously.

    20. Having to Explain Any of the Above

    And perhaps this is the final indignity.

    Something embarrassing happens.

    People stare.

    Someone asks whether you're alright.

    And you find yourself calmly explaining:

    "I've got Multiple Sclerosis."

    As though MS is some badly behaved child you've brought shopping.

    Meanwhile inside your head you're saying:

    YES, THANK YOU, NERVOUS SYSTEM.

    ANOTHER FUCKING MASTERCLASS.

    Eventually, Embarrassing Just Becomes Tuesday

    There is a peculiar point you can reach with chronic illness where the definition of embarrassing starts changing.

    You fall over.

    You laugh.

    You forget a word.

    You invent another one.

    You spill your drink.

    You clean it up.

    Your bladder betrays you.

    You deal with it.

    Not because these things aren't difficult.

    They bloody well are.

    Loss of independence is real.

    Loss of confidence is real.

    Bladder and bowel dysfunction can be devastating.

    Cognitive problems can be frightening.

    Mobility problems can fundamentally change somebody's life.

    But embarrassment depends partly upon believing your body shouldn't be doing these things.

    After living with MS long enough, you begin to understand something.

    Your body is damaged.

    Sometimes it misbehaves spectacularly.

    That isn't a moral failing.

    So eventually you stop apologising quite so much.

    You start adapting.

    You start carrying spare clothes.

    You learn where every toilet is.

    You laugh when you've called the refrigerator a cold food wardrobe.

    You swear at your legs.

    You negotiate with your bowels.

    You glare suspiciously at stairs.

    And somewhere along the way, the ridiculous becomes normal.

    Because after enough years with Multiple Sclerosis...

    “Embarrassing” gradually becomes “Tuesday.”

    Welcome to My Living Hell.

    Real life. Real MS. Real humour.

    No inspirational fucking butterflies required.

    and yes I have had many incidents like those above over the years.. remember when you go out be prepared for every eventuality sending everyone peace healing love and light

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    @goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    Well hello, and a massive welcome to all my readers whether you’re humanoid, NHI, or otherwise.

    The past few weeks have been nothing short of tumultuous! I have so much ground to cover, so let's break it down into smaller pieces.

    Health & Wellness Updates: The Hard Stuff

    First, an update on Albertine's finger is good news she doesn't need the finger removed after all! Apparently, the part that was sewn on was okay. While the total tip of her finger is gone for good (I suspect a hedgehog or some rodent claimed the rest in the bushes!), it’s been a very trying couple of weeks overall.

    On my end, I’ve driven more over these last three weeks than I have in probably eight years! It proves that when I'm feeling good, I can still do it. But let me tell you about the contrast: when I got home after those drives, the brain fog and stress attacks were mind-boggling. How I long remember my old days of riding my motorcycle or trike through the Southwest of England! Those fun times and all the camaraderie shared with Albertine on our rides through Cornwall and Devon what an amazing time it was.

    The Autonomic Dysfunction Puzzle

    I recently received a letter from the hospital that dropped a major bomb: they suspect I might have autonomic dysfunction. Honestly, how many times have I gone to the doctor detailing these symptoms? And speaking of listening... it’s frustrating. It's only now, after ten years and much prompting, that the medical staff are looking into everything.

    I feel completely unheard. Having put together evidence over a decade while being ignored and gaslit was exhausting. But here’s where the AI came in! Years ago, I used a medical AI to input all my symptoms, and it suggested: Autonomic dysfunction severe with a histamine issue. Since managing this diet has been tough, I've been committed to avoiding any food that can trigger a reaction.

    It makes me feel pissed off like nobody listened for ten years! Why do we need constant scans and needles? All of it seems focused on mapping my progressive MS, but not helping the other symptoms that come along with it. Sometimes, you just want someone to say, "Leave him alone; let him rot."

    However, I also get that the NHS is stretched incredibly thin right now. There are so many patients, and we desperately need more resources. But I do wonder why natural remedies aren't considered as a viable part of the treatment path?

    💻 Tech Troubles & The Brain Fog

    Between Albertine having her finger cut and me trying to reinstall Windows 11 and Zorin on two different machines, my computer issues have been massive! Peripheral hardware played havoc with us for days. I’m so tired that the brain fog and stress attacks are back in full force it's horrendous how quickly my body reacts to major stress.

    Speaking of technology... I find myself using AI more and more, and it genuinely helps me navigate life right now. It makes me wonder why there isn't a specialised "disabled package" for things like this? For some of us, £20 a month is a huge expense. A few quid a month would make a massive difference!

    🚲 Mobility Scooters & Unexpected Adventures

    My journey with mobility scooters has been... eventful. I finally got my brand new four-wheeled model and took it out in town. Well, it started acting up immediately. It kept cutting out and nearly caused a horrific accident right in the middle of a roundabout! Because of this, it’s stuck in the garage for now. (No need to name the company; that would be unfair.) I've sent two emails and received absolutely nothing back.

    For the moment, I am safely back on my trusty three-wheeled scooter of death. At least that seems functional! Fingers crossed I get a proper response from the four-wheel company by the end of the week, or it's heading straight back.

    🌠 From Scooters to Space: And Other Updates

    Finally, for the fun stuff! Last night, while watching the eclipse (around 7:20 PM UK time), I saw my first UFO and filmed it! It was a grey round ball. I can’t judge its size, but it hovered perfectly still in the sky for about twenty minutes—like a ghost passing by. What joy!

    Sending peace, healing, love, and light to all of you. Please remember to hydrate today; my conservatory is over 110 degrees, and the house is at least 30+! Be safe and keep cool until next time!

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    @goblinbloggeruk - sick@mylivinghell.co.uk
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it

    *This article is a fictional and darkly humorous portrayal of living with Multiple Sclerosis. Experiences of MS vary greatly between individuals.

    Multiple Sclerosis has stolen strength, memories, certainty and independence but it has not managed to destroy my humour. In this fictional letter, MS looks at the person whose life it invaded and proudly describes its cruellest work.*

    A Letter from Multiple Sclerosis – Living With an Invisible Disease

    Dear Human,

    We've been together a long time now.

    Long enough that I know your routines better than you do.

    Remember when you first met me?

    You thought I was tiredness.

    Stress.

    A trapped nerve.

    Vitamin deficiency.

    Bless you.

    I let you believe that for a while.

    I enjoy a slow entrance.

    Now look at us.

    You wake up every morning wondering which version of me you'll get.

    Some days I let you walk.

    Some days I borrow your legs.

    Keeps things interesting.

    Do you remember when you trusted your own body?

    I do.

    That was my favourite part.

    Watching that confidence disappear one tiny piece at a time.

    Not enough for anyone else to notice.

    Just enough for you.

    That little stumble.

    That forgotten word.

    The coffee cup you suddenly couldn't grip.

    The name you knew yesterday but couldn't remember today.

    Magnificent.

    The clever part wasn't hurting you.

    Pain is easy.

    Anyone can inflict pain.

    No...

    My masterpiece was making you doubt yourself.

    "Did that really happen?"

    "Am I imagining it?"

    "Perhaps I'm just getting older."

    Exactly.

    That's where I live.

    Not only inside your nerves...

    Inside your certainty.

    I've taught your immune system to attack the very wiring that makes you...

    You.

    A beautifully engineered act of friendly fire.

    Your own body became my accomplice.

    I hardly have to do any work anymore.

    The funny thing is...

    Everyone keeps asking what you've done today.

    As if surviving me isn't already a full-time occupation.

    They see you standing.

    They assume you're fine.

    They don't see the calculations.

    The balance.

    The fatigue.

    The pain.

    The electrical storms firing through your spine.

    The words disappearing halfway through a sentence.

    No...

    That's our little secret.

    I particularly enjoy introducing new symptoms without warning.

    Just when you think you've understood me...

    Surprise.

    Here's dizziness.

    Enjoy your lunch with swallowing problems.

    Fancy some burning feet?

    Let's throw in bladder urgency while you're standing in the supermarket queue.

    Why?

    Because I can.

    I have no rules.

    No timetable.

    No conscience.

    You call me unpredictable.

    I call it creativity.

    But then...

    Something rather annoying happened.

    You laughed.

    Not once.

    Not politely.

    Properly laughed.

    You made jokes about me.

    You named your mobility scooter.

    You turned your misery into stories.

    You started writing.

    People read them.

    Some cried.

    Some smiled.

    Some recognised themselves for the first time.

    That irritated me.

    You see...

    Diseases like me thrive on silence.

    On shame.

    On isolation.

    Every time you tell the truth...

    You steal a little of my power.

    Every time someone says...

    "That's exactly how I feel."

    ...I lose.

    Don't misunderstand me.

    I'm still here.

    I'll still hide your memories.

    I'll still tighten your muscles.

    I'll still steal tomorrow's energy before you've finished today.

    That isn't changing.

    But neither, it seems...

    Are you.

    You're still getting up.

    Still writing.

    Still laughing.

    Still refusing to become only my diagnosis.

    Honestly...

    You're becoming rather inconvenient.

    With the utmost professional irritation,

    Multiple Sclerosis

    P.S.

    I'll probably move your keys tomorrow.

    Just to remind you who's technically in charge.

    Wishing all the readers of this blog a happy week ahead peace love and light to All

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    Twitter@goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    **please remember I suffer with severe cognitive dysfunction, and use AI to proof read and help solve this issue so you can understand it **

    The Finger Lives! Unfortunately, So Does the 70-Mile Round trip Home

    Well, a very good morning, good afternoon or good evening to whoever happens to be reading this blog, wherever you are in the world.

    Humanoid, non-human intelligence, confused extraterrestrial, government surveillance operative or somebody who simply clicked the wrong bloody link...

    Welcome.

    It has been quite a day.

    In fact, it has been quite a week in my little corner of reality.

    The Continuing Adventures of Albertine's Finger

    First, an update on Albertine's finger.

    As you may remember, she cut the bloody thing off.

    Not nearly cut it off.

    Not gave it a nasty little nick while chopping an onion.

    No.

    She went for the deluxe package.

    Fortunately, the rather clever people at the hospital sewed it back on.

    Unfortunately, after all that excitement, she developed a pressure sore on the finger where it had been bound and boarded up.

    And yes — pressure sore.

    Not "precious saw", as my speech-to-text system originally decided.

    Apparently my computer thought this story needed an enchanted woodworking tool.

    It didn't.

    The finger has already provided quite enough entertainment.

    The Great Hospital Expedition

    This morning we left home at approximately quarter past seven for Albertine's 8:30 appointment.

    This was necessary because getting a parking space at a hospital seems to require military planning, satellite reconnaissance and possibly divine intervention.

    Arrive at a sensible time?

    Don't be ridiculous.

    The car park will already resemble the evacuation of a major European city.

    So off we went at stupid o'clock.

    And then something deeply suspicious happened.

    Every traffic light was green.

    All the way there.

    I don't trust this sort of thing.

    When the universe suddenly starts being helpful, I immediately assume it's distracting me while something else prepares to explode.

    But no.

    We arrived safely.

    We found somewhere to park.

    And then...

    Albertine was actually seen five minutes early.

    At a hospital.

    Five.

    Minutes.

    Early.

    At this point I began looking around for horsemen of the apocalypse because clearly the normal laws governing space and time had temporarily been suspended.

    A Quick Word About Driving and Medication

    Because I knew I had to drive today, yesterday I didn't take any of the medication that could affect my ability to drive, in accordance with the medication guidance.

    I wanted to make absolutely certain I was safe and okay to drive.

    And actually, despite the traffic and inevitable hold-ups, the drive wasn't too bad.

    Which brings us to the important bit.

    THE FINGER LIVES!

    The plastics team examined Albertine's finger and gave us some genuinely brilliant news.

    It has made an amazing recovery.

    Better still...

    It will NOT need to be amputated.

    That was bloody wonderful to hear.

    The pressure sore that had developed is also sorting itself out and they weren't concerned about it.

    So, after everything that has happened, the finger has apparently decided it quite likes being attached to Albertine and intends to remain there.

    Excellent decision.

    There is still a little bit missing from the very tip and about an inch further down there is...

    No.

    We're not discussing that.

    Absolutely not.

    There are certain things my brain does not need to visualise.

    My imagination is already far too efficient at producing nightmare fuel without being given additional source material.

    Let's just say:

    Finger attached.

    Finger recovering.

    Albertine happy.

    Warlock Dark not looking too closely.

    Everybody wins.

    And Then MS Sent Me the Bill

    Of course, getting there and back meant roughly a 70-mile round trip.

    About two hours of driving altogether.

    And now I'm home...

    I can feel the invoice arriving.

    The brain fog is beginning to creep in.

    My neck is starting to feel decidedly strange.

    The energy reserves are disappearing.

    Somewhere inside my nervous system a tiny bureaucrat has apparently looked at today's activities and announced:

    "Excuse me, sir. You appear to have exceeded your permitted allocation of functioning like a normal human being."

    And here comes the penalty.

    MS: because apparently driving a car for two hours counts as an extreme sport.

    Still...

    It wasn't anywhere near as bad as the last time I drove.

    And I've been told that the more driving I manage, the easier and more familiar it should become.

    From today's experience, I have to agree.

    So that's actually another little victory.

    I'll take those wherever I can bloody find them.

    That's Enough Humaning for One Day

    I'm going to keep this one relatively short because my brain has now started quietly packing its belongings.

    Soon it will put an "OUT OF OFFICE" sign on my forehead and disappear somewhere behind my left ear until further notice.

    But today was a good day.

    Albertine's finger survives.

    No amputation.

    The pressure sore is improving.

    I managed the 70-mile hospital expedition.

    The van behaved.

    The traffic lights apparently worshipped us.

    And we even found a hospital parking space.

    Frankly, that's enough miracles for one Friday.

    So, to everybody reading this blog...

    Humanoid.

    Non-human intelligence.

    Extraterrestrial.

    Interdimensional lurker.

    AI wondering why the hell it has been asked to proofread another story involving severed fingers and Multiple Sclerosis.

    Or whoever — or whatever — you may be...

    I send you all peace, healing, love and light.

    May you have a truly magnificent weekend when it finally arrives on your doorstep.

    And remember:

    Sometimes success isn't climbing a mountain.

    Sometimes success is simply getting home after a 70-mile hospital trip with your passenger still possessing roughly the same number of fingers she started the day with.

    I'll take that.

    Peace, healing, love and light to you all.

    Warlock Dark

    Written by Warlock Dark. Edited by Brain Fog. Sabotaged by Technology. Approved by one surprisingly resilient finger.

    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.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

    @goblinbloggeruk - sick@mylivinghell.co.uk
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