Multiple sclerosis is My Living Hell

disability

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

    🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

    Well… Podcast Episode 2 of My Living Hell is now done.

    This episode takes a rather interesting journey through some of the realities of living with disability — from mobility scooters and wheelchairs to batteries, severe brain fog, and the joys of having to deal with a body that seems to have developed a mind of its own.

    I talk about mobility scooters, wheelchairs and mobility batteries, including some of the practical realities that come with relying on mobility equipment. Because apparently, getting from A to B wasn't complicated enough already!

    And then there is the subject of piercings — including the rather unusual experience of having to have my nipples pierced. Yes… you read that correctly. There is a story behind that one This podcast isn't polished, scripted or pretending that disability is all inspirational quotes and happy endings. It's raw, personal and real

    So grab yourself a coffee, tea, beer… or whatever gets you through the day, and have a listen to My Living Hell Podcast – Episode 2.

    And if my brain fog sounds particularly bad during this episode, that's because it bloody well was. 😂

    ☠ Please take note of the trigger warning before listening. ☠

    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 🎗️

    Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

    Congratulations on Your Multiple Sclerosis!

    Thank you for choosing MULTIPLE SCLEROSIS™.

    You didn't actually choose it, obviously.

    It arrived without being ordered, cannot be returned, has no warranty and customer services appear to consist mainly of someone saying:

    “We'll see you again in six months.”

    Your MULTIPLE SCLEROSIS™ package may contain:

    • One unreliable nervous system
    • Several mysterious symptoms
    • A bladder with independent political ambitions
    • Brain fog
    • Fatigue
    • Random pain
    • Questionable balance
    • Various pharmaceutical products
    • Approximately 47 hospital letters
    • And one leaflet featuring suspiciously cheerful people walking through a meadow

    Batteries not included.

    Actually, batteries may have been the first fucking thing to go.

    Welcome to the unofficial instruction manual.


    IMPORTANT SAFETY INFORMATION

    Before operating your body, please read these instructions carefully.

    Failure to follow the instructions will make absolutely no difference because your nervous system isn't reading them either.

    Symptoms vary enormously between people with MS, so your particular model may behave completely differently from somebody else's.

    This is apparently considered a feature rather than a manufacturing defect.


    STEP 1: ASSEMBLE YOUR SYMPTOMS

    Tools Not Included

    Upon opening your MS package, you may discover a seemingly random selection of components.

    These can include:

    Fatigue Battery permanently displaying 14%.

    Brain Fog Words may disappear without warning.

    Tremor Coffee transportation system compromised.

    Spasticity Muscles operating under their own management.

    Pain May appear in locations where absolutely nothing appears to be wrong.

    Dizziness Floor and ceiling occasionally exchange responsibilities.

    Bladder Problems Warning system may activate approximately four seconds before catastrophe.

    Numbness Useful when you don't want sensation.

    Less useful when you actually fucking do.

    IMPORTANT:

    Your symptoms may change, disappear, return, mutate or invite several friends around without prior notice.

    Do not attempt to understand this.

    Neurologists have machines for that and they're still scratching their heads.


    STEP 2: IGNORE THE “INVISIBLE ILLNESS” COMMENTS

    Your MULTIPLE SCLEROSIS™ model may look deceptively normal from the outside.

    This can cause members of the public to malfunction.

    Common error messages include:

    “But you look fine!”

    Thank you.

    My nervous system will be delighted to hear that.

    “You don't look disabled.”

    Excellent. I'll inform the lesions.

    “Everyone gets tired.”

    Yes.

    And everyone gets headaches.

    That doesn't mean everyone has a fucking brain tumour.

    “You were alright yesterday.”

    Correct.

    Yesterday was yesterday.

    This is apparently how time works.

    “Have you tried thinking positively?”

    No.

    I've been deliberately thinking negatively because apparently that's what destroys myelin.

    Thank God you've arrived.

    Recommended response:

    Smile.

    Nod.

    Imagine hitting them with the inspirational leaflet.

    Continue with your day.


    STEP 3: ACCEPT THAT YOUR BODY IS NOW A HAUNTED HOUSE

    Welcome home.

    Lights flicker.

    Things creak.

    Doors don't work properly.

    Strange noises occur at 3 a.m.

    Occasionally something touches you when absolutely nothing is there.

    Congratulations.

    You are now living inside Neurological Amityville.

    Random burning sensation?

    Ghost.

    Electric shock down your spine?

    Ghost.

    Foot suddenly feels freezing despite being perfectly warm?

    Definitely ghost.

    Leg starts vibrating?

    Poltergeist.

    Mystery stabbing pain in your left arse cheek at 2:17 a.m.?

    We don't discuss what lives in the basement.

    The important thing is not to panic.

    Eventually you become accustomed to saying:

    “That's new.”

    ...and then carrying on making tea.


    STEP 4: INSTALL BRAIN FOG

    Brain Fog comes pre-installed with many MULTIPLE SCLEROSIS™ packages.

    Once activated, ordinary language may become temporarily unavailable.

    For example:

    Kettle becomes water boiling thing.

    Remote control becomes television changer.

    Refrigerator becomes cold cupboard.

    Socks become foot gloves.

    Spoon becomes food shovel.

    Names are particularly vulnerable.

    People you've known for twenty years may suddenly become:

    Mate.

    Troubleshooting:

    Q: Why did I walk into this room?

    A: Unknown.

    Q: What was I looking for?

    A: Unknown.

    Q: Why am I holding a screwdriver?

    A: Extremely unknown.

    Please return to the previous room.

    The original thought may reload automatically.


    STEP 5: ENERGY MANAGEMENT

    Your body contains a rechargeable battery.

    Unfortunately it appears to have been purchased from a suspicious bloke at a car boot sale.

    You may wake up displaying:

    27%

    Showering: -10%

    Getting dressed: -10%

    Making breakfast: -8%

    Leaving the house: -30%

    Someone saying “You should get out more”: -97%

    Battery critically low.

    Shutting down.

    IMPORTANT:

    Energy cannot necessarily be restored by simply “having a little rest.”

    Sometimes resting makes you tired.

    Sometimes sleeping makes you tired.

    Sometimes doing absolutely nothing makes you tired.

    This is known as MS fatigue.

    It is not laziness.

    It is not ordinary tiredness.

    And it cannot be cured by somebody enthusiastically suggesting yoga.


    STEP 6: INSTALL MOBILITY UPGRADES

    Your original walking equipment may occasionally become unreliable.

    Optional accessories include:

    Walking stick.

    Crutches.

    Rollator.

    Wheelchair.

    Mobility scooter.

    Grab rails.

    Anything else that helps you get through the bloody day.

    These are tools, not defeats.

    If a mobility scooter means you can travel somewhere you couldn't otherwise reach, then the scooter isn't taking away independence.

    It's giving some back.

    Also, scooters come with horns.

    Use this information responsibly.

    Or don't.

    BEEP BEEP, MOTHERFUCKERS.


    STEP 7: MANAGE THE BLADDER EXPANSION PACK

    This optional feature is apparently extremely popular with MS.

    Symptoms may include:

    Needing a wee.

    Needing a wee urgently.

    Needing a wee extremely urgently.

    Needing a wee approximately eleven seconds after you've just had a wee.

    And the legendary:

    I WAS FINE THREE SECONDS AGO.

    Experienced users eventually develop an extraordinary geographical skill.

    They do not enter a building and see:

    Restaurant.

    Shop.

    Pub.

    Cinema.

    They see:

    TOILET.

    Everything else is secondary.


    STEP 8: UPDATE YOUR DAILY PLANNER

    Old daily planner:

    9:00 — Shopping 11:00 — Coffee 1:00 — Lunch 3:00 — Visit friend 6:00 — Dinner

    MS daily planner:

    9:00 — Wake up.

    9:07 — Assess damage.

    9:15 — Reassess ambitions.

    10:30 — Recover from getting dressed.

    12:00 — Consider doing something.

    12:03 — Too ambitious.

    1:00 — Eat.

    2:00 — Forget what today's plan was.

    3:00 — Nap.

    5:00 — Wake up feeling strangely more tired.

    7:00 — Wonder where entire fucking day went.

    10:00 — Suddenly unable to sleep.

    Excellent system.


    STEP 9: PERFORM ROUTINE MAINTENANCE

    There is currently no magical service interval where somebody replaces your nervous system and sends you home good as new.

    Annoying, frankly.

    So maintenance becomes management.

    Rest when you need to.

    Move when you can.

    Use the mobility aid.

    Take the break.

    Cancel the plan.

    Accept help when you want it.

    Tell people no.

    Laugh when something is genuinely ridiculous.

    Swear when something genuinely deserves swearing at.

    You do not receive bonus points for making yourself completely fucking miserable just to prove you can still do something without assistance.


    STEP 10: TROUBLESHOOTING

    Problem: Leg not responding.

    Solution: Turn leg off and back on again.

    Unfortunately no switch has yet been located.


    Problem: Extreme fatigue.

    Solution: Rest.

    If unsuccessful, rest from resting.


    Problem: Forgotten word.

    Solution: Describe object increasingly aggressively until somebody guesses it.


    Problem: Tremor.

    Solution: Tell everybody you're auditioning as a cocktail bartender.


    Problem: Balance failure.

    Solution: Wall.


    Problem: Bladder warning.

    Solution: RUN.

    Correction:

    Move toward toilet at maximum currently available neurological speed.


    Problem: Someone says, “But you look fine.”

    Solution: System recommends sarcasm.


    STEP 11: WARRANTY INFORMATION

    Your MULTIPLE SCLEROSIS™ package comes with:

    NO WARRANTY.

    There are no refunds.

    No exchanges.

    No replacement nervous systems.

    No loyalty points.

    And apparently no customer satisfaction questionnaire.

    However...

    You may acquire several unexpected accessories along the way.

    A darker sense of humour.

    An impressive tolerance for bullshit.

    An encyclopaedic knowledge of toilets.

    An ability to appreciate good days differently.

    A community of people who understand why “I'm tired” can mean something far beyond needing an early night.

    And the ability to keep going when your body is behaving like something assembled on a Friday afternoon before a bank holiday.


    FINAL ASSEMBLY CHECK

    Are all components working?

    No.

    Have you followed the instructions?

    Mostly.

    Did it help?

    Debatable.

    Are you still here?

    Yes.

    Then congratulations.

    Assembly complete.

    Well...

    Complete-ish.

    Because MS may be part of your life.

    It may alter what you can do.

    It may alter how you do it.

    It may occasionally reduce an ordinary Tuesday to a badly written neurological sitcom.

    But you are not the faulty component.

    The disease is.

    So use the stick.

    Ride the scooter.

    Take the nap.

    Forget the word.

    Find the toilet.

    Laugh when you can.

    And when MULTIPLE SCLEROSIS™ produces another completely undocumented error...

    Consult the official troubleshooting procedure:

    “Oh, for fuck's sake. What now?”

    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 ☣

    Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being. ⚠️

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

    For a few days before the MRI, I had what I call white coat syndrome. Properly speaking, white coat hypertension is when your blood pressure shoots up around doctors, hospitals and anything wearing a lanyard. What I had was the whole rotten family: medical anxiety, claustrophobia, bad dreams, nerves buzzing, bladder acting like it had joined the resistance, and a head already planning its escape route.

    I kept saying I was fine. Of course I did. When Albertine asked how I felt about going for the MRI, I said, “Everything is okay. I’m fine.”

    That was bollocks.

    What she did not know at first was that I had been having horrible dreams about the MRI machine. That white, soulless tube. The tube I hate going into because I hate enclosed spaces. For several days before Sunday, it was living rent-free in my head.

    With MS, stress is not just a thought. It gets into your body. The fatigue gets louder, the nerve feelings get weirder, the bladder gets more urgent, sleep goes to hell and your brain starts behaving as if it has been left out in the rain with the lid off. You can feel like you are preparing for a minor medical appointment while your body has decided it is the final scene of a disaster film.

    Monday morning, as I write this, I am definitely not back to any sort of normal — which, with MS, is a fairly flexible concept anyway. The drive had sapped every last bit of energy from me. Then, about an hour and a half or two hours after getting home, everything kicked in. I felt strange. My head felt like it was on another planet. It is hard to explain, but it is one of those horrible MS feelings where you know you are not right, yet you cannot put it neatly into words for somebody who has never lived in a body with faulty wiring.

    The MRI itself was not exactly a spa day.

    I was lying on a platform with my head wedged into a restraint of some sort. Then they put the mask over my face. I asked what it was, and the chap told me it helped with the scan.

    Helpful. Lovely. Grand.

    The moment that thing went over my face, My Living Hell properly began.

    It was the sudden enclosure. That instant feeling of, “Oh God. Oh dear.” My body started reacting badly. Bear in mind, I do not like enclosed spaces at the best of times. He told me that if I had any problems, no matter what, I should give them a shout.

    Well, that was reassuring.

    I had written on the form, in big letters, that I suffer with white coat syndrome and that I have a fear of enclosed spaces. They asked me what white coat syndrome was. I suspect “my body panics around medical stuff because life has repeatedly given it excellent reasons to” may have been too long for the form.

    Then I was sent up the tube with a little alarm ball in my hand. I was told to press it if I felt weird.

    As soon as I went in, blind panic arrived like it had been booked in for the same appointment.

    How the hell do I get out of here if something goes wrong?

    That was the only thought going through my mind for the first few minutes. I was looking for escape routes from a machine specifically designed not to have any. This was probably my fourth MRI, so you would think I would be used to it by now. Apparently not. Trauma does not become charming with repetition.

    The machine began its full industrial-noise concert. Whirring, banging, clanking, alien drilling sounds — all loud enough to make you wonder whether NASA had accidentally built the hospital next door. I had headphones and earplugs in, supposedly to protect me from the noise. “Supposedly” is doing a great deal of work in that sentence.

    I lay there holding that little ball as if it were a sacred egg and the only thing between me and a full-blown escape attempt. It was the weirdest feeling and the weirdest mindset. If you have never been through it, trust me: it is a real head fuck. No fun whatsoever.

    I would rather have a lumbar puncture than an MRI.

    Actually, no. I have had three lumbar punctures. They were horrendous too. So perhaps I would rather be left alone with a cup of tea and no medical equipment within a ten-mile radius.

    Then, because apparently the day had not supplied enough inconvenience, I had to take my nipple rings out. Now I cannot get the damn things back in. So I will probably have to pay somebody to put them back through. What an absolute faff. Plastic bars may be the sensible answer if there is another MRI in my future, because I do not fancy yanking them out again just to visit the white tube of doom.

    Sorry if that is too much information. But this is my blog. You knew what you were getting into.

    Back in the scanner, the sounds carried on. My body began doing what it does: spasms in my legs, spasms in my arms. At one point they pulled me out because they could see I was in discomfort. The nice young man took the mask off, had a chat with me, and then it was back into the hole of death I went.

    The descent was very slow. Even slower than my three-wheel trolley of death — otherwise known as my powerchair.

    I went deeper into that white tube, still clutching the alarm ball for dear life. I saw a little red-and-white target at the end and thought, “How much longer have I got to put up with this?” I tried to tell myself not to think about what was happening. Naturally, that made me think about it even more.

    It felt like an eternity.

    Eventually, I was pulled back out. The staff asked whether I was okay. I said I was as well as could be expected with what was wrong with me, and I laughed a bit. Because if you cannot laugh at the absurdity of it all, you may as well scream into an MRI scanner — which, to be fair, I was considering.

    Then I found myself in the lift, heading down to the ground floor, and there was my wheelchair still waiting for me. Small mercies. I was ushered through the doors and saw Albertine in the waiting room. I think I might even have smiled. I was bloody glad to be out of there.

    I got back into the WAV, took a slug of water, and headed home. Thankfully, I did not take any strange directions this time. The old VW has already cost me nearly two grand in injectors this year, because apparently it too has decided to develop a chronic condition. It is over ten years old, expensive, temperamental and occasionally makes alarming noises. We have a lot in common.

    Once home, I did my blog and then spent the afternoon feeling strange in my head and body. Still do, if I am honest. That is MS for you: a medical ordeal can finish, but the body does not always get the memo.

    So that was my MRI experience: the white tube, the noise, the mask, the spasms, the panic, the tiny alarm ball and the overwhelming desire to be anywhere else on Earth.

    To anyone facing an MRI while living with MS, anxiety, claustrophobia or all three: you are not weak, dramatic or making a fuss. Your body is reacting to something it finds frightening. Tell the staff. Ask questions. Ask for breaks if you need them. Hold the bloody ball if it helps.

    And if you get through it, you have earned a very large cup of tea — or whatever gets you safely back into the land of the living.

    Peace, healing, love and light to everyone reading this. Have the best week you can manage. The cold weather is coming, so get the blankets and warm stuff early, before the shops decide they have vanished into the same dimension as common sense.

    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 ☣

    Tumblr is @livingwithmsblog twitter@livingwithms
    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

    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 proof read and help solve this issue so you can understand it

    25 classic MS moments turned into the world's least desirable bingo game. Dark humour, brutal honesty and no bloody prizes. Forgot why you entered a room? Tripped over absolutely nothing? Nearly wet yourself while the toilet was twelve feet away? Congratulations you've just marked another square on MS Bingo, the only game where winning feels suspiciously like losing.

    MS Bingo: The Game No One Wants to Win

    Welcome to MS Bingo the only game where the prizes include fatigue, bladder urgency, brain fog and accidentally walking into a door frame.

    No purchase necessary.

    No skill required.

    In fact, having skill may actively work against you.

    All you need is Multiple Sclerosis, a functioning sense of black humour and the emotional resilience to shout “BINGO!” while lying on the kitchen floor wondering why your left leg has resigned.

    HOW TO PLAY

    Simple.

    Read the squares.

    Every time one happens, mark it off.

    Five in a row?

    BINGO.

    Complete the entire card?

    Congratulations.

    You win absolutely fuck all.

    Except perhaps an appointment in six months and another leaflet explaining fatigue.


    THE MS BINGO CARD

    1. Forgot Why I Walked Into the Room

    You made the journey.

    You overcame the legs.

    You entered the room.

    Unfortunately, your brain forgot to come with you.

    Stand there looking confused for thirty seconds.

    Return to original room.

    Remember immediately.

    Classic.


    2. Tripped Over a Shadow

    No obstacle.

    No step.

    No loose carpet.

    Possibly not even a shadow.

    Your nervous system simply decided upright was getting repetitive.

    MARK YOUR CARD.


    3. Pretended to Be on My Phone to Hide a Tremor

    Nothing suspicious here.

    Just checking...

    erm...

    the weather.

    For seventeen minutes.

    While gripping the phone with both hands like I'm defusing a bomb.


    4. Called an Everyday Object “The Thingy”

    Could you pass me the...

    The...

    You know.

    The fucking...

    THINGY.

    Everybody knows what I mean.

    Except apparently everybody.


    5. Nearly Wet Myself Because the Toilet Was Twelve Feet Away

    To an ordinary person: twelve feet.

    To an MS bladder:

    THE NORTH FACE OF EVEREST.


    6. Walked Like I Was Drunk While Completely Sober

    Bonus point if somebody gave you the look.

    Double bonus if this happened before breakfast.


    7. Dropped Something Immediately After Picking It Up

    Pick up keys.

    Drop keys.

    Pick up keys.

    Drop keys.

    Consider simply moving house and leaving the keys where they are.


    8. Forgot Someone's Name Mid-Conversation

    You've known this person for fifteen years.

    You've attended their birthday parties.

    You've met their children.

    Today their name is:

    Mate.


    9. Bounced Off a Door frame

    Door width: perfectly adequate.

    Your trajectory: apparently calculated by a drunken satellite.


    10. Lost My Phone While Holding My Phone

    Do not laugh.

    The brain fog was conducting an investigation.

    The primary suspect was the phone.

    Which was in my hand.


    11. FREE SPACE — FATIGUE

    Naturally the centre square is fatigue.

    Because unlike normal bingo, MS gives everyone the free square whether they bloody wanted it or not.


    12. Had to Sit Down After Getting Dressed

    Getting dressed.

    A task previously considered preparation for the day.

    Now apparently the day itself.


    13. Used the Wrong Word and Just Carried On

    "Put the milk in the washing machine."

    You know what I meant.

    I know what I meant.

    The milk knows what I meant.

    Move on.


    14. Leg Suddenly Stopped Cooperating

    Left leg reporting for duty.

    Right leg:

    I'm sorry, this department is now closed.


    15. Had an Unexpected Spasm in Public

    Your body suddenly performs interpretive dance.

    Nobody asked it to.

    Least of all you.


    16. Needed a Rest After Having a Rest

    Normal person:

    "I feel refreshed."

    MS person:

    "That was exhausting."


    17. Forgot What I Was Saying Halfway Through Saying It

    I was making an excellent point about...

    ...

    ...

    Oh, fuck it.

    Next square.


    18. Tried to Pick Something Up and Somehow Kicked It Further Away

    You bend down.

    Miss.

    Kick object.

    Object travels underneath furniture.

    You stare at it.

    It stares back.

    Object wins.


    19. Bladder Gave Approximately Four Seconds' Notice

    Thank you for your generous warning.

    Next time perhaps send the notification before opening the floodgates.


    20. Had to Explain “No, I'm Not Drunk”

    Again.

    No.

    Still neurological.

    Still sober.

    Still walking like I'm returning from a three-day stag weekend.


    21. Forgot Whether I'd Taken My Medication

    Did I take it?

    I remember thinking about taking it.

    Did thinking about taking it become taking it?

    Excellent.

    Now we have Medication Schrödinger's Cat.


    22. Started a Job and Forgot What the Job Was

    Cleaning kitchen.

    Find letter.

    Read letter.

    Remember email.

    Open phone.

    See photo.

    Start looking at photos.

    Twenty minutes later you're sitting down holding a spoon with absolutely no idea how the adventure began.


    23. Laughed Because the Alternative Was Crying

    Possibly the most important square on the card.

    Not because MS is funny.

    Sometimes it absolutely isn't.

    But occasionally the sheer ridiculousness of living inside an unreliable nervous system becomes so absurd that laughter is the only sensible response left.


    24. Said “I'm Fine” While Clearly Being Held Together by Sarcasm

    The universal chronic illness translation:

    "How are you?"

    "Fine."

    Meaning:

    Three systems have failed, one leg is negotiating independence and I haven't properly slept since Tuesday, but neither of us has time for the full answer.


    25. Got BINGO Before Breakfast

    Congratulations.

    You have achieved peak Multiple Sclerosis.

    Your prize is...

    another day with Multiple Sclerosis.

    Hooray.


    THE REAL POINT OF MS BINGO

    Behind the joke, every square represents something that can be genuinely frustrating, humiliating, exhausting or frightening.

    Cognitive problems are real.

    Mobility problems are real.

    Tremor is real.

    Bladder dysfunction is very bloody real.

    Fatigue isn't laziness.

    And when your body stops doing things you've spent your entire life taking for granted, laughing about it doesn't mean it doesn't hurt.

    Sometimes dark humour is simply refusing to let MS have ownership of every miserable moment.

    If my nervous system insists on turning life into a ridiculous game...

    I reserve the right to take the piss out of the rules.

    BINGO.

    peace healing love and light to all our readers of this blog thank you

    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@livingwithms - warlock@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 help solve this issue so you can understand it lol

    What Is My Living Hell

    People often think this blog is about Multiple Sclerosis.

    It isn't.

    MS is simply the landscape.

    This blog is about what happens when the landscape beneath your feet begins to move.

    It's about discovering that your body and your mind aren't always in agreement.

    It's about asking questions that neurologists don't pretend to answer.

    Who am I when my legs refuse to walk?

    Who is thinking the thoughts that my damaged brain struggles to express?

    Is consciousness nothing more than electrical impulses, or is there something deeper quietly watching the chaos unfold?

    I don't claim to have the answers.

    Some days I lean towards neuroscience.

    Other days I wander into Gnosticism, Wicca, Jung, quantum speculation, psychedelics, folklore, or the strange stories whispered around campfires.

    Not because I think they replace medicine.

    They don't.

    MS deserves evidence-based treatment, and I would never suggest otherwise.

    But while medicine explains what is happening to my nervous system, philosophy and spirituality help me ask what it means to live through it.

    Somewhere between MRI scanners and ancient myths...

    ...between mobility scooters and mushroom circles...

    ...between neurologists and trickster spirits...

    ...I keep searching.

    Perhaps that's what this blog has always been.

    Not a search for a cure.

    A search for understanding.

    If you're willing to walk that path with me—however slowly—welcome.

    Pull up a chair.

    The kettle's on.

    The universe is about to get weird.

    Wishing all the readers of 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

    X@goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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    ⚠️ 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 help with written content

    So a very good afternoon to fellow humanoids, NHI and all readers of this blog, a big welcome to you all, as we know the heat dial for the UK is being turned up allegedly next week to eye watering temps, I will be giving a full report on my new mobility scooter as well ..Still please remember to hydrate and stay safe...

    The Heatwave is Coming – And It’s Not Here to Make Friends

    Summer’s here, and with it, the sun’s annual reminder that it’s still the main character in this dystopian climate sequel. For most people, a heatwave is just an excuse to complain about the weather. For those of us with MS or chronic illnesses? It’s a full-blown survival challenge. So, let’s talk about why your body is basically a faulty thermos—and how to stop it from turning you into a human prune.

    1. Understanding the Risks: Your Body vs. The Sun (Spoiler: You’re the Underdog)

    Heatwaves aren’t just about the temperature rising—they’re about your body’s ability to not rise to the occasion. And if you have MS or a chronic illness, your internal thermostat is already on strike.

    MS: Your immune system’s already throwing a tantrum. Add heat, and suddenly you’re at higher risk of heatstroke, dehydration, and electrolyte imbalances. (Fun fact: Your body’s idea of “cooling down” might just be collapsing dramatically.) Chronic Illness: Diabetes, heart disease, or kidney issues? Your immune system’s already working overtime. Heat just adds insult to injury—literally. Medication Side Effects: Some meds are like that one friend who always leaves you stranded. They’ll happily dehydrate you or mess with your electrolytes while you’re just trying to survive the day.

    2. Why Hydration is King (And You’re a Peasant in Its Court)

    Your mission, should you choose to accept it: Replace the fluids you’re losing faster than your will to live in this heat.

    Slower Sweat Production: MS and chronic illnesses often mean your body’s cooling system is… lazy. Less sweat = more risk of dehydration. (Congrats, you’re basically a cactus with worse coping mechanisms.) Medication Side Effects: Some meds are thirsty little gremlins, siphoning off your fluids like it’s their job. Mobility: Heat + MS = fatigue that hits harder than your aunt’s passive-aggressive texts. Staying hydrated keeps you moving (or at least upright). Fever: MS and infections? Your immune system’s overreaction is the equivalent of bringing a flamethrower to a candlelight vigil. Extra stress = extra trouble.

    3. Heat 101: What You Actually Need to Know

    The Danger Zone: For MS folks, 102°F (39°C) isn’t just uncomfortable—it’s a red flag waving in your face. Your body’s basically screaming, “ABORT MISSION.” Pre-emptive Hydration: Don’t wait until you’re thirsty. By then, your body’s already sent three strongly worded emails to your brain. Electrolytes: Water’s great, but sweat’s sneaky—it takes sodium, potassium, and magnesium with it. Skip the electrolytes, and your muscles might stage a mutiny. Sip, Don’t Chug: Guzzling water like it’s the last drop on Earth? Congrats, you’ve just earned a one-way ticket to Nausea Town. Small, frequent sips are your new best friend.

    4. Practical Tips: How to Outsmart the Sun

    Check the Weather: Use apps, alerts, or a Ouija board—whatever it takes to stay ahead of the heat. Stay Cool: Even if you feel fine, your body’s probably lying. Find the AC, a fan, or a shady spot and claim it as your kingdom. Snack on Salt: Salty foods help you retain water. (Finally, an excuse to eat all the crisps.) Monitor Blood Sugar: Diabetics, this is your reminder that heat and blood sugar have a toxic relationship. Keep an eye on it. Listen to Your Body: Dizzy? Lightheaded? That’s not your body being dramatic—it’s begging for water. Give it what it wants. Avoid Strenuous Activity: Now’s not the time to prove you’re “still capable.” The heat doesn’t care about your ego.

    5. Tools of the Trade (Because You’re a Warrior, Not a Martyr)

    Hydration Reminder App: Set hourly alerts. Your brain’s already forgetful; don’t let dehydration make it worse. Symptom Tracker: Log your symptoms like you’re documenting evidence for a court case. (Spoiler: The defendant is the heat, and it’s guilty.) Electrolyte Calculator: Because guessing is for people who enjoy hospital visits.

    6. The Bottom Line: Hydrate or… Well, You Know

    Staying safe in the heat isn’t just about hiding in the shade. It’s about outsmarting your own body’s betrayal. So drink up, stay cool, and remember: The sun may be a tyrant, but you’re the rebel with a water bottle.

    Final Thought

    If you’ve ever passed out from heat exhaustion, you’ll know—your body doesn’t do subtle. Treat it like the dramatic queen it is, and maybe, just maybe, you’ll make it through summer unscathed. And remember If you have MS and you’re not peeing clear, you’re either dehydrated or dead. No in-between." "Heatwave forecast: 100°F. My MS forecast: ‘Lol, good luck.’ Hydrate like it’s your job." "Chronic illness + summer = A horror movie where the villain is the sun.

    Wishing everyone peace, healing, love, and light no matter who you are or where 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
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