Multiple sclerosis is My Living Hell

Invisible Illness

All posts tagged Invisible Illness by Multiple sclerosis is My Living Hell
  • 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

    *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 help solve this issue so you can understand it ****

    well a very good afternoon to all the readers of the blog, humanoids and nhi even.

    Multiple Sclerosis does not always behave in the way medical leaflets suggest. Alongside the better-known symptoms, MS can cause crushing chest sensations, phantom itching, electric shocks, burning feet, swallowing difficulties, emotional outbursts and strange reactions to heat. This article explores the weird side of MS with medical context, lived experience and the dark humour needed when your nervous system starts inventing symptoms of its own.

    Nobody Told Me MS Could Do That!

    The Strange Symptoms That Make You Question Your Own Sanity

    "Is this my MS... or have I finally lost the plot?"

    If you've lived with Multiple Sclerosis for more than about five minutes, you've probably asked yourself exactly that.

    One minute you're dealing with numbness.

    The next you're convinced your ribs are being crushed by an invisible anaconda.

    Then your feet feel as though someone has poured boiling water over them...

    ...except they haven't.

    Welcome to the wonderfully confusing world of MS.

    The disease doesn't read textbooks.

    Neither does your nervous system.

    While most people think MS simply causes weakness or difficulty walking, the reality is far stranger. Because MS attacks the brain and spinal cord, almost any neurological function can be affected, producing symptoms that sound completely unbelievable until you've experienced them yourself.

    The MS Hug

    Whoever named this symptom deserves a stern talking to.

    There is absolutely nothing affectionate about it.

    Imagine someone wrapping industrial ratchet straps around your chest and slowly tightening them.

    Some people think they're having a heart attack.

    Others feel they can't breathe.

    The good news?

    It's usually muscle spasms caused by damaged nerve pathways rather than damage to the heart or lungs.

    The bad news?

    It feels utterly convincing while it's happening.

    The Itch That Doesn't Exist

    This one drives people mad.

    Your arm itches.

    You scratch it.

    Still itches.

    Scratch harder.

    Nothing.

    Because the itch isn't coming from your skin.

    It's coming from your brain.

    Your nervous system has basically dialled the wrong number.

    No cream.

    No antihistamine.

    No amount of scratching fixes a signal that's being generated by damaged nerves.

    Electric Shocks Down Your Spine

    You bend your neck.

    ZAP!

    It feels as though someone has connected your spine to the National Grid.

    This is called Lhermitte's sign.

    It lasts only seconds...

    ...but those seconds certainly get your attention.

    Many people describe it as one of the strangest sensations they've ever experienced.

    Laughing When Nothing's Funny

    Or crying...

    ...when nothing is actually wrong.

    This is called pseudobulbar affect (PBA).

    It's one of the cruellest symptoms because people assume it's psychological.

    It isn't.

    It's neurological.

    The emotional wiring between different parts of the brain has become disrupted.

    Your emotions aren't fake.

    They're simply being expressed at the wrong time.

    My Feet Are On Fire...

    Except...

    They're freezing.

    Or numb.

    Or crawling with invisible insects.

    MS has an extraordinary ability to invent sensations that make absolutely no logical sense.

    Burning feet.

    Ice-cold legs.

    Pins and needles.

    Buzzing.

    Vibrating.

    Many people spend years trying to explain these feelings.

    The truth is...

    Sometimes there simply aren't words for damaged nerve signals.

    Suddenly You Can't Swallow Properly

    One moment you're eating lunch.

    The next your throat seems to have forgotten how swallowing works.

    It can be frightening.

    Swallowing is actually an incredibly complicated neurological process involving dozens of muscles and multiple cranial nerves.

    MS can interfere with that communication, making food seem to stick or making swallowing feel strangely difficult.

    Vision Has Its Own Sense of Humour

    Hot bath?

    Blurry vision.

    Warm day?

    Double vision.

    Hairdryer?

    Why not make the room wobble a little?

    Heat temporarily slows already damaged nerve pathways, causing existing symptoms to flare. This phenomenon—called Uhthoff's phenomenon—doesn't usually mean new damage has occurred, but it can make old symptoms briefly worse.

    The Invisible Symptoms Nobody Sees

    Perhaps the strangest symptom of all...

    Is having symptoms nobody else can see.

    Brain fog.

    Fatigue.

    Pain.

    Odd sensations.

    People glance at you and say...

    "You look really well."

    Meanwhile your nervous system is holding what can only be described as a small electrical civil war.

    Living With The Weird

    One thing I've learned is this...

    MS rarely asks permission.

    It simply invents new ways of reminding you that the brain controls almost everything.

    Sometimes it feels like an electrical fault in the universe.

    Sometimes it's terrifying.

    Sometimes it's absurd.

    And sometimes...

    All you can do is laugh, because if you don't, you'll spend your life trying to explain to people why your ribs are hugging you, your feet are on fire, your face is being electrocuted, and your throat has forgotten how swallowing works.

    MS isn't just unpredictable.

    It's the greatest practical joker your nervous system never wanted.

    Final Thoughts

    Living with Multiple Sclerosis means accepting that strange can become normal.

    Wishing everyone who reads this 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 ☣

    @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. AI helps with written content or it would be a hard confusing read

    Good morning, afternoon fellow humanoids and NHI...

    ...and a warm welcome to anyone who has accidentally wandered into this corner of organised neurological chaos.

    Today's public service announcement is aimed at the healthy population.

    Don't panic.

    Nobody is asking you to perform brain surgery.

    Nobody expects you to memorise the immune system.

    You simply need to master the incredibly difficult skill of opening your mouth without your brain immediately taking annual leave.

    Apparently this is harder than it looks.

    Living with Multiple Sclerosis means you hear the same comments over...

    and over...

    and over...

    until eventually you're tempted to fake your own death simply to avoid hearing them again.

    So, in the interests of humanity, here is...

    A Beginner's Guide to Talking to Someone With MS Rule One

    If you don't understand MS...

    don't explain MS.

    This sounds obvious.

    Apparently it isn't.

    "But you look well."

    Thank you.

    So did the Titanic before it hit the iceberg.

    MS doesn't come with flashing lights, smoke pouring from your ears or a zombie complexion.

    Most of us become Olympic-standard actors.

    We're experts at pretending everything is fine while our nervous system quietly conducts a house fire behind the scenes.

    Looking well simply means we've become very good at suffering discreetly.

    "My aunt's neighbour's dog walker had MS..."

    Fantastic.

    Did they also have my MRI?

    My lesions?

    My nervous system?

    My medical history?

    No?

    Then we're probably comparing completely different diseases that merely share the same name.

    MS is like snowflakes.

    Except instead of being beautiful and festive...

    every one tries to ruin your life differently.

    "Have you tried yoga?"

    No.

    Because clearly twenty years of neurologists somehow overlooked stretching.

    You've done it.

    You've solved neurology.

    Somebody call Stockholm.

    The Nobel Prize committee are waiting.

    "Maybe it's stress."

    Yes.

    Having a brain that occasionally forgets how legs work can be a little stressful.

    Excellent observation.

    "Everything happens for a reason."

    If the reason involves my immune system trying to assassinate my spinal cord...

    I'd quite like to have a word with management.

    "At least it's not..."

    Stop.

    Just...

    stop.

    Pain isn't the Olympics.

    Nobody wins the gold medal for suffering.

    There is no podium.

    No national anthem.

    No commemorative tea towel.

    "You should stay positive."

    I do.

    Most days.

    Other days I discover my left leg has resigned without giving notice.

    Positivity doesn't repair damaged myelin.

    If it did, the NHS would simply prescribe motivational posters.

    "You don't need that mobility scooter."

    Correct.

    I bought it because I enjoy being overtaken by pensioners pushing shopping trolleys.

    Nothing says freedom quite like crawling uphill at four miles an hour while traffic forms a small county behind you.

    "You're too young to be disabled."

    You're too old to be saying something that stupid.

    "Have you tried this miracle supplement?"

    Ah yes...

    the mysterious powder discovered by somebody's cousin on Facebook.

    Amazing how the entire neurological community somehow missed this miracle cure that's apparently available for £39.99 plus postage.

    Things You CAN Actually Say

    "I'm sorry you're having a rough day."

    "I'm here if you need anything."

    "Would you like me to carry that?"

    "Fancy a cuppa?"

    Congratulations.

    You've just demonstrated more emotional intelligence than half the internet.

    Final Thoughts

    People rarely mean to be hurtful.

    Most simply don't know what to say.

    Unfortunately...

    many decide that not knowing what to say is an excellent reason to say absolutely everything that falls out of their mouth.

    Living with MS isn't about wanting sympathy.

    It's about wanting people to realise that invisible doesn't mean imaginary.

    Some days we're walking.

    Some days we're limping.

    Some days we're rolling around on mobility scooters pretending we're auditioning for Mad Max: Disabled Road Warriors.

    The illness changes.

    The symptoms change.

    The pain changes.

    The fatigue changes.

    What never changes...

    is how refreshing it is when somebody simply treats you like a human being instead of a medical mystery wrapped inside an inspirational Facebook quote.

    Until next time...

    Try not to accidentally cure anybody with yoga.

    The neurologists get terribly upset.

    Final Thought

    If you've got MS, share this with somebody who means well but accidentally speaks before engaging their central nervous system.

    They might just learn something.

    still peace healing love and light to all who read 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.)

    @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 this may be a confusing read. AI help with content

    A very good afternoon ,evening, or morning,to all who read this blog, I know its Thursday..my spellings getting insane so need more help..my eye sights getting worse.. oh joy this day brings lol...

    MS Myths Debunked What People Get Wrong (And Why Google Isn't a Neurologist)

    Let's play a game.

    Take a shot every time someone says one of these classics:

    "But you don't look sick."

    "My cousin's neighbour's dog walker cured it with bonzo dog food."

    "At least it's not cancer."

    Actually... don't. Alcohol and MS fatigue are already in enough of a toxic relationship.

    If you live with Multiple Sclerosis, you've probably heard enough unsolicited medical opinions to qualify for an honorary degree in Other People's Bollocks.

    It's fascinating, really.

    You spend years dealing with neurologists, MRIs, blood tests, medications and symptoms that make absolutely no sense...

    ...then some anonymous person from social media confidently informs you that all you really need is turmeric.

    Remarkable.

    Myth #1: "You Don't Look Sick."

    Brilliant observation.

    You also don't look like you have Wi-Fi, anxiety or a mortgage, yet somehow all three exist.

    MS is often called an invisible illness because many symptoms can't be seen.

    Fatigue. Pain. Brain fog. Balance problems. Numbness. Vision issues.

    They're all real whether they come with flashing neon signs or not.

    Just because someone smiled today doesn't mean they aren't paying for it tomorrow.

    Human beings aren't mood rings.

    Myth #2: "You're Too Young To Have MS."

    MS doesn't politely wait until retirement.

    Many people are diagnosed between the ages of 20 and 40.

    Apparently autoimmune diseases never received the memo about age restrictions.

    If they had, neurologists would have considerably less paperwork.

    Myth #3: "Have You Tried..."

    Yes.

    I've tried medication.

    Physiotherapy.

    Exercise.

    Rest.

    Diet changes.

    Supplements.

    Yoga.

    Stretching.

    Hope.

    Denial.

    Swearing creatively.

    I've even tried pretending everything's fine.

    Spoiler:

    That one lasted until Tuesday.

    The internet has convinced an alarming number of people that watching three YouTube videos somehow outranks years of neurological research.

    Congratulations.

    You've mistaken confidence for competence.

    Myth #4: "It's All In Your Head."

    Technically...

    Yes.

    That's literally where the lesions are.

    Congratulations on accidentally stumbling into medical accuracy.

    Unfortunately, that's where your expertise ends.

    MS is a disease where the immune system attacks the protective covering around nerves, disrupting communication between the brain and the rest of the body.

    It's neurological.

    Not imaginary.

    There's a rather significant difference.

    Myth #5: "My Friend Has MS And They're Fine."

    Excellent.

    My mate owns a Labrador.

    That doesn't mean every dog behaves the same.

    MS is famously unpredictable.

    No two people experience it the same way.

    Some have relapsing symptoms.

    Others experience gradual progression.

    Some use mobility aids.

    Some don't.

    Some work full-time.

    Some can't.

    Comparing one person with MS to another is about as scientific as comparing apples to traffic cones.

    Myth #6: "You're Just Tired."

    No.

    You're tired.

    I'm experiencing fatigue.

    There's a difference.

    Being tired is needing another coffee.

    MS fatigue is feeling like someone unplugged your batteries, replaced your bones with wet cement and then expected you to function like nothing happened.

    It's not laziness.

    It's not lack of motivation.

    It's one of the most disabling symptoms many people with MS experience.

    Myth #7: "There's Probably A Cure They're Hiding."

    Ah yes.

    The secret underground vault where scientists keep cures next to Bigfoot, Atlantis and common sense on social media.

    Medical research is improving all the time.

    Treatments have advanced enormously.

    Many people now live fuller, longer lives because of disease-modifying therapies.

    But there isn't a miracle cure hidden behind a curtain while neurologists twirl moustaches and laugh maniacally.

    Real science isn't a Netflix conspiracy documentary.

    It's slower.

    Messier.

    And considerably less exciting.

    The Real Problem

    The biggest disability many people with MS face isn't always the disease.

    Sometimes it's ignorance dressed up as kindness.

    People mean well.

    Mostly.

    But good intentions don't magically become useful information.

    Sometimes the most helpful thing you can say is astonishingly simple.

    "I'm sorry you're dealing with that."

    "How are you today?"

    "Can I help?"

    No miracle diets.

    No Facebook research.

    No comparing them to your aunt's hairdresser.

    Just empathy.

    It's free.

    Unlike most prescriptions.

    Final Thought

    Living with MS already means adapting to uncertainty.

    Nobody needs the added bonus of becoming an unpaid myth-buster every time they leave the house.

    So before offering advice nobody requested...

    Before assuming someone is "fine" because they're smiling...

    Before announcing you've discovered the cure via an influencer selling herbal powder...

    Pause.

    Remember that the person living with MS probably knows more about it than the bloke commenting underneath a cat video.

    Empathy will always age better than ignorance.

    And unlike internet experts...

    It doesn't require Wi-Fi.

    wishing all the readers of my blog peace healing love and light no matter who you are ....

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    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 this may be a confusing read. Some AI written content.

    "The Good News: MS Allows Me to Be an Anti-MS Activist...For My Own Benefit."

    So a very good afternoon to fellow humanoids, NHI and all readers of this blog. this is very different approach I am taking with this blog post hope you like it

    Oh, the life of a chronic MS patient – where you're constantly fighting an invisible enemy while secretly celebrating your own absurdity.

    I've been living with MS for what feels like an eternity (and is probably much shorter than it actually is). The good news? It's allowed me to turn my attention inward and focus on one thing: being a total control freak...in my own mind, that is.

    The Benefits of MS:

    1. Dedicated Time: My chronic illness has given me the gift of uninterrupted self-loathing. No more scheduling therapy sessions or trying to fit exercise into a busy schedule (because let's be real, I'd rather spend time binge-watching cat videos). This means hours upon hours spent alone with my thoughts.

    2. Creative Outlet: MS has encouraged me to develop an impressive range of creative talents. Imagine if "The Cure" album were written by someone with this condition; the lyrics would be like a twisted diary of my inner monologue, full of paranoid ramblings and existential dread. My friends would describe it as "deep," "empathetic," or (gasp!) even "funny."

    3. Innovative Problem-Solving: Living with MS has forced me to develop resourceful ways to cope. I've mastered the art of making excuses for my fatigue ("I'm just not morning people"), turned complaining into a full-time job ("I have no complaints...I don't feel like it right now."), and even developed a system to "diagnose" my symptoms without actually seeing a doctor.

    The Drawbacks:

    1. Social Isolation: I've lost count of how many conversations I've had about MS (it's become an inside joke in our circle). People struggle to understand, and it can feel like they're judging me for not being able to control my disease. But hey, at least I have my computer.

    2. Depression and Anxiety: The weight of chronic illness is crushing. It's easy to spiral into hopelessness, wondering why this cruel fate has been bestowed upon me. These feelings only intensify when no one expects them to.

    3. Overwhelm and Frustration: MS can be unpredictable, leading to devastating setbacks or sudden flare-ups that feel like they're coming out of nowhere. This constant fear of the unknown is exhausting.

    The Secret to My Happiness:

    It's simple: I've learned to prioritize my own well-being above all else. When you're constantly fighting for survival (literally), it's tempting to give up or become completely consumed by your condition. But here's the thing:

    I'm not defined by MS. I am more than this disease; I'm a complex, multifaceted human being with thoughts, feelings, and passions.

    So, to all my fellow MS warriors out there: Don't let MS dictate your life. Use it as fuel for creativity, growth, or simply as an excuse to binge-watch cat videos.

    And remember: even in the darkest times, there's always a glimmer of hope. Or at least, there's Medical Marijuana .

    Still wishing everybody a fantastic happy week, sending everyone who reads this blog. Peace healing, love and lite, no matter who, what or where you are, or if you're an N. H.I. or whatever. Aha! rain pls stop lol

    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
    enter image description here

  • 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.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

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

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

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

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

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

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

    I’ve had enough.

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

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

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

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

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

  • 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.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    So good afternoon fellow humanoids, wherever or whomever you may be. Yes, it's one of those very frustrating afternoons. When you think I wish I could be doing something totally different than being stuck in this chair, looking out the window, watching all going on around me. I thought this afternoon I would try and do something different but now I am regretting it. I have a very large bruise on my leg and I am not feeling the best that's for sure. I overdid it. I thought that I would help. Albertine in the garden. Big mistake indeed.

    I just wish I'd waited for the demon weed wacker to come over and do everything. And then I wouldn't have hurt myself, but there we go. You think you can do anything until you can't, but there we go. I won't tell you what I tried to lift or pull. I shouldn't have done it, but there we go. You still think you're superhuman. Your mind is acting like a 20 year old and your body is acting like a 120 year old person. I woke up feeling very strange and weird this morning for usual pain in the abdomen and all the nerves singing their morning musical as they do before my painful morning ablutions. And I felt rather good about myself as well. And I thought I would try and be helpful today. I think I've been helpful, but I have been lecturing Albertine about not, overdoing it, and I don't think that went down rather well.

    Wow, and I've just seen the price of fuel unbelievable. Well, I'm glad I've got my three-wheel trolley of death. At least it takes a small charge, and it's cheaper to run, but I can only carry a few things, and it takes me hours to get anywhere on it. But there we go. I suppose there will be a lot fewer cars on the road. And then that will mean the roads will be a lot clearer for me to ride the roads of the southwest of England at a speed of 8 miles an hour for the death-defying three-wheel trolley of death. As Viper Storm said, "It should have go fast as stripes, but my friend Viper, who has also a three-wheeled sex trolley of death." Yes, indeed, that's what he has, and rides around north of the county. Oh indeed, what a marvelous sight to see indeed. He makes the fair maidens these buckle. Oh yes indeed. The man who invented the word plumstick.

    As I sit here and fire up the volcano for my medical marijuana, I smile because I think to myself, well, at least I'm nearly human. as I have this goblin brain, ah ha. The goblin sometimes takes over and it can cause mayhem in my life. The goblin is that person that causes me more trouble than anything else in my life. The goblin is my multiple sclerosis. If you haven't guessed already, yes. Ah, the blog goblin, the goblin, is what I call my MS to be, fair. It seems the goblin is a bit of an alter ego. Just like my main persona, Mr. Warlock Dark, has been my persona now for so many years. I've forgotten 30 years, maybe 40 odd years. And he's been around the warlock. Yes, he's my alter ego, he's the real me. He's that person who is completely raw. Balls to the wall, says it like it is, doesn't like being censored or sanitized. Yes, but unfortunately, it seems that everything in my world has changed 360 degrees. And my God, I am so glad for those changes.

    So yes, I have had my mind taken elsewhere by other things over the past few weeks when I discovered AI music generating programs. So that has taken up some of my time, but unfortunately I've been getting the severe brain fogs and been unable to do much as of late and it's really, really annoying. I just kind of sit there looking at that blank page wondering about what lyrics I'm going to use. But I must say I've even surprised myself with what I've done. I've even turned a lot of stories into lyrics as well for songs and turned them into songs. In fact, I've been doing all sorts of weird different things. But unfortunately only when my mind and head allows because it's just completely screwed up. I have the pain in my head. I just feel so tired all the time. I just feel so tired and the pain is just unbelievable. And this bloody tinnitus is just up force ten at the moment.

    This autonomic dysfunction is also playing hell with my breathing as well and causing me severe problems. I have this problem with autonomic dysfunction, it's with me all the time and I can feel it all the time and I can feel the different levels that it goes up on. It's very strange and I'm waiting to see a neurologist still and I'm also waiting to see a Immunologist. But again, it's going to be long-winded and they're going to take their time. I've been told to see a neurologist, well, I haven't seen one in five or six years, to actually see when I've got to wait another five or six months, and to see a new immunologist, well, I've got to wait a month to see my doctor, so I can ask him to see a new immunologist as well. And it was my MS nurse that told me to contact my doctor's surgery, leave a message that I need to see the immunologist about my autonomic dysfunction and the histamine thing. But she said this would make things go quicker, but it hasn't, of course, it seems as though it's made things bloody worse as usual, because what with strikes, bureaucracy and one thing and another, it looks as though I am being left again and forgotten.

    Still, I am used to being forgotten and treated weirdly by people, but I really couldn't give a damn. The thing is I'm never going to change and I'm not going to change for anyone. So there we go. I know my limits and I know what I can and cannot do. And I'm not going to let people tell me who or what I am. I am me. The thing is, multiple sclerosis hits people in many, many different ways. No two people are the same with MS. And it's the same with chronic illness in general. People who have chronic illness suffer 24/7. Some illnesses are hidden that we cannot see. And, you know, people have to realize that all chronic illness is something that is the harshest thing that can happen to anybody. It rages through their lives. It causes complete havoc. It causes a living hell for everybody. You lose friends. You have family who won't even speak to you. You have people that cannot even look you in the eye. You're treated differently. Sometimes you're treated like a pariah. All because you have a chronic illness. And in a power chair, people seem to treat you differently. They seem to treat you like you have something that's catching and they can catch it too if they get too near. Well, fuck them. That's what I say. Fuck them. And, yeah, they need to get themselves a life.

    Any victory, no matter how small, is a victory. Still, I must finish here, sending everybody peace, healing and love and light. Take care and remember stay strong.

    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
    enter image description here

  • 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.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. non AI content

    Hello fellow Humanoids So, it is a dark Tuesday evening and yes, the confusion continues with trying to get me to see a nuro dude It seems that the communications have gone awry and then some. But then again what did I expect where I am concerned? Apparently I have not been transferred to the new hospital and I am with the old hospital.

    So I only found that out a couple of days ago. So now I am having to deal with the old hospital. So yes you can imagine how confusing everything has totally got with absolutely everything. So we have my doctor here dealing with one hospital and yes of course it's the wrong one.

    So no wonder I've been stuck somewhere since November in this weird system of things. So I have been desperately in need of seeing a neurologist since the ambulance men came out in November. And that plainly hasn't happened even when I have been begging. I have been begging and asking to see a neuro and nothing happened because of the confusion of me asking to move to a new hospital with a stronger neuro team. So, I don't blame my local doctors, I just blame the bureaucratic nightmare that is the NHS with one hospital not speaking to another hospital because their communications don't connect or some weirdness like that. Ah well, never mind.

    So, yes, my cognitive fog or brain fog is lessening at the moment, and my autonomic dysfunction is calming down slightly due to my strict dietary control. I also found out something really annoying today that the only clinic in the UK that deals with autonomic dysfunction is private and that I would have to pay. So yeah, that means I'm gonna have to suffer. Oh the fucking joys of it eh? You could not make this stuff up.

    The trapped nerve or impacted nerve in my neck shoulder is starting to cause me less grief and I am managing to now sleep. Well, that until is the kitten start screeching because yes, they've come into season again. Oh, the joys. Albertine and I are awaiting the vet's phone call so we can take both the kittens in and have them spayed or seen to whatever they do to female kittens these days. We were having a right laugh remembering when we have had cats and dogs spaded or neutered before and they've had to wear those funny like space helmets. And they're going to look really stupid walking around with their little space helmets on wobbling around the room. And I'm going to video it and I'm going to put it up so everybody can have a right laugh. Also, of course, we're going to go and get them microchip at the same time.

    So yes, I have been dealing with the medical people on their own terms as I have been using AI. And AI has had me really clued up on everything and what can and cannot be done. It's amazing how AI has helped me to come to certain conclusions and it really has helped me. So the one thing I do find helpful about AI is the medical side. It really does help, and I'm 110% down with that I can tell you because it's certainly helped me.

    So yeah, I may bang on about AI sanitizing everything that I personally say changes my swearing changes what I say, what I mean, etc. To be more understanding for people. I don't like that. I prefer my own raw brain fog. I've got MS and this is how it looks people,, Because you're going to have to deal with it. Yes, I can change conversation. Mid conversation. I can change the subject of the conversation like it's going out of fashion. Sometimes trying to have a conversation with me about one subject. I can be going from one subject to another subject to another subject. And then there's my memory. Oh my God trying to have a conversation with me sometimes is like trying to have a conversation. with a drunk duck.

    I suppose the thing that makes me laugh more than anything is when you get the people who see you in your power chair wheelchair and their sort of people that like to pat you on the head and go there there. And then they don't realize what they've unleashed they've unleashed Mr dark who is this. Completely no holds barred. eccentric, Tin foil hat wearing psycho with Progressive ms and autonomic dysfunctionated person who will let you have it both barrels and don't give a shit about it either. Because I have had that happen to me and I find it quite funny when people stare at me and look at me as though I am from another planet. I find it really funny. When you have lived on the outside of society like I have done for the past 40-50 years, you will understand Looking in can be a very funny and worthwhile experience. That's for sure.

    So I get the odd one or two people who actually read my blog posts. I'm very surprised indeed but thank you for reading and sometimes I just wonder if what I'm saying makes any sense to anybody seriously. I have joined many MS forums over the years and many places where people with MS go to talk but they seem to just vanish !!and disappear like most of the MS groups in the UK. One minute there there, the next minute there gone.

    So, if there's anybody who reads this blog that has any email addresses of MS groups anywhere in the UK or anywhere in the world for that matter, that I can publicly advertise on a separate ongoing blog post.., so if there's an MS group say in Brattaslava, that's just a name out of the air that wants to say, "Yep, there's an MS group there." Well, I'll stick it on up so people know about it. So people can go there, people can meet the people and people can see people because the most important thing, if you have MS, you should be talking to other people with MS. Yeah? Because the more people that get together and chat, the easier it is to deal with the affliction, the illness, the sickness, the madness that we have. Seriously, talking really does help.

    Trust me indeed when I say to you, I know many, many people with many chronic illnesses. Many of my friends have passed recently, unfortunately. And what I say is, if you're out there and you want to have a bloody good rant, and you have no one to rant to, you can always rant to me. I don't really care. You can send me an email, ranting. You need to rant. I'm always here for people who've got MS who need help. Remember that, folks, because people with MS understand people with MS. Yeah? People who are starting out on the MS trail, and I know that sounds a horrible thing to say, they need to know the truth of how it can progress. Seriously, I'm prepared to tell the truth, the raw truth, that a lot of people won't talk about, you know?

    So, if you have any serious questions that you would like answered privately, I will answer privately. But if you have any questions that you would like to be shared publicly on my blog and answered on my blog, just get in touch with me, drop me a line. All emails and everything will be treated in the strictest of confidence. Why should you suffer in silence? I know I suffered in silence for many years. Sometimes knowing the truth is being better than being gaslit. !!!!

    As ever, sending anyone and everyone who reads these words, peace, healing, love and light, no matter whom or whatever you are, or wherever you're from.

    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
    enter image description here

  • 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.

    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
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