Multiple sclerosis is My Living Hell

dark humour

All posts tagged dark humour 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.🎗️

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

    When Your Nervous System Decides to Have a Full-On Meltdown

    Well, it appears my body has decided that having progressive MS wasn't quite entertaining enough.

    So, naturally, it has thrown a chest infection into the mix.

    Because apparently my nervous system needed a little extra encouragement to completely lose the plot.

    I've been having what my doctor has described as paroxysmal symptoms. For those who don't speak fluent medical terminology, paroxysmal basically means symptoms that can suddenly appear in episodes or bursts.

    And bloody hell, do they know how to make an entrance.

    One minute I'm doing whatever it is I'm trying to do, and the next my nervous system seems to announce:

    "RIGHT, EVERYBODY! EMERGENCY MEETING! WE'RE GOING TO FUCK EVERYTHING UP!"

    And off we go.

    Spasms. Strange sensations. Weird feelings in my head. Sudden neurological problems. Sweating. General bodily confusion.

    Sometimes it feels as though my nervous system has been handed the controls by a drunk electrician.

    Then along comes the chest infection

    As if progressive MS wasn't enough to deal with, I've now got a chest infection as well.

    I've already been seen by my doctor, so I'm not sitting here pretending I know more than the medical professionals. But one thing I've learned over the years is that when you're living with MS, an infection can make everything feel considerably worse.

    Your body is already fighting something, and then your nervous system decides it would quite like to join the party.

    Except it doesn't bring beer.

    It brings neurological chaos.

    Symptoms that are normally manageable can suddenly become much more noticeable. Things can feel amplified. The fatigue can be ridiculous. Your body feels like it's working against itself.

    And when you've already got paroxysmal symptoms occurring, adding an infection into the equation can feel like somebody has poured petrol onto a bonfire.

    The great neurological meltdown

    So here I am.

    Progressive MS.

    Chest infection.

    Paroxysmal symptoms.

    Heart-related symptoms that have already been checked by my doctor.

    Sweating.

    A weird bloody head.

    And various other bits of my nervous system apparently auditioning for their own independent television series.

    At this point, I've stopped asking:

    "What's next?"

    Because clearly my body takes that as a challenge.

    The strange thing about MS is that it's not always something dramatic that you can see from the outside.

    Someone can look at you and think:

    "He looks alright."

    Meanwhile, inside your nervous system, World War III is taking place.

    That's one of the things I wish more people understood about neurological illness.

    You can't necessarily see the battle.

    You just experience it.

    So what now?

    For the moment, I'm following my doctor's advice and trying to let my body deal with the infection.

    I'm also trying not to panic every time my nervous system decides to throw another curveball.

    That's easier said than done.

    When you've lived with MS for long enough, you become very aware of every strange sensation your body produces.

    Is it MS?

    Is it the infection?

    Is it a paroxysmal episode?

    Is it fatigue?

    Is my nervous system having another spectacular hissy fit?

    Or is my body simply reminding me that I am not actually in charge here?

    Sometimes there doesn't seem to be a bloody instruction manual.

    Living with the unpredictable

    That's probably one of the hardest things about progressive MS.

    It's not just the symptoms themselves.

    It's the unpredictability.

    You can wake up and have no idea what sort of day your body has planned for you.

    And sometimes the answer appears to be:

    "Today we're going to try absolutely everything."

    So yes, I'm currently experiencing what I can only describe as a massive neurological meltdown.

    But I'm still here.

    Still writing.

    Still taking the piss out of the situation wherever possible.

    Because if MS is going to keep throwing shit at me, I might as well throw some dark humour back.

    Welcome to My Living Hell.

    Where apparently even my nervous system has developed a sense of humour.

    And unfortunately, it's bloody terrible.

    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

    Welcome to the first My Living Hell podcast episode 1.

    The first My Living Hell podcast is finally here! I ramble about Multiple Sclerosis, life, personal experiences and whatever else wanders into the conversation. Raw, honest, occasionally dark and definitely not polished into oblivion.

    ☠ 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

    Well it's Tuesday morning and we are heading towards autumn that time of the year of cold rain, fog, cold rain, fog and horrible weather. And I'm wishing all readers of this blog a very happy good morning afternoon evening no matter wherever you may be in the world or universe.

    My Living Hell podcast lives

    Well, the My Living Hell podcast lives. I've done all the tests, everything looks good, so we will be doing podcasts shortly. So that's excellent news, and I will be covering a wide range of subjects, not just multiple sclerosis and mental health, but also things to do with the paranormal and things people don't tell you about when you have MS, which is rather interesting.

    Myelin Maniacs

    Myelin Maniacs, well today, Tuesday, it will be the first recording. Yes, I have it on Great Authority from Stigsy that tonight we go and do some recordings for the podcast to be released when Stigsy has Done what he has to do to it. So in the next few weeks be looking on the Myelin Maniacs website and you might see the first podcasts. Yes, they will be coming soon and I shall let you know on the My Living Hell when these podcasts will be. It is going to be quite exciting and I'm looking forward to it and I'm going to be a co-host and I really am looking forward to putting my point of view, my personal point of view over and listening to other points of view and gaining understanding from other people about this strange illness that we seem to have that nobody really knows how we got it, nobody really knows how you cure it but it's there and we have to make the best of things.

    So, here is a poem for Autumn or the Vernal Equinox.

    Equinox, MS & the Fog

    Tomorrow the seasons change. Autumn arrives with its usual dramatic entrance cold mornings, darker evenings, leaves falling everywhere as though the trees have finally had enough of life too. And then there's me. Still here. Still dealing with MS. Still trying to remember why the hell I walked into the kitchen. Brain fog. That wonderful little gift from MS where your brain apparently decides to close the office early without telling management. You know that feeling… You know you've got something to say, you know you knew what it was, you can almost reach it… And then nothing. Gone. Probably somewhere with my missing socks. The equinox is supposed to be about balance. Day and night standing equal. Funny thing is, MS doesn't seem particularly interested in balance. One day you're functioning, the next your body appears to have filed a formal complaint against you. Fatigue. Pain. Brain fog. The ridiculous uncertainty of not knowing what tomorrow is going to throw at you. And yet… the seasons keep changing. Summer quietly disappears. Autumn takes over. Winter waits around the corner like some bastard who knows you're coming. But perhaps there's something worth remembering in all this. The trees don't apologise for losing their leaves. They don't call themselves failures. They don't stare at the branches and wonder why they're not still green. They simply let go. And perhaps that's something those of us living with MS need to remember. Some days we'll have more to give. Some days we won't. Some days the brain fog will roll in so thick you couldn't find your arse with both hands and a map. And that's okay. Tomorrow night, the darkness will be a little longer. But darkness isn't the end of the story. It's just another part of it. So here's to the equinox. To autumn. To surviving another season with MS breathing down our necks. To the days when the brain works… and the days when it clearly has gone down the pub without telling us. And most importantly here's to still being here. Still fighting. Still laughing when we can. Still swearing when necessary. Still telling MS: “You're not getting the last word.” Not today. Not tomorrow. And certainly not while I've still got enough brain fog to write the bloody story.

    Still, sending everybody peace, healing, love and light. and wishing everybody a happy autumn equinox when it arrives tomorrow. And let's hope that the weather will be fair and not foul. Oh, and a sudden thought, I'm going to be uploading a lot of music and it's all about MS and the effects, but it's done in sort of psychedelic weird lyrics and stuff. It's, well, come out of my head and gone into a music programme. So I will be posting some more up and that might be quite interesting.

    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

    The First Proper Podcast

    Well, it looks like I've finally got all the technical problems sorted out with the podcast. So next week, I'm going to record the first proper episode.

    And believe me, this one is going to be quite interesting.

    The subject is MS — and what happens after you're told those two little words: Multiple Sclerosis.

    Because nobody really tells you what comes afterwards.

    What happens to your family? What happens to your friends? What happens to your relationships? And what happens to you when your life suddenly changes forever?

    I'm going to talk about my own experience. How people didn't believe me. How some people simply didn't want to know me any more because of those two stupid little letters: MS.

    It's going to be raw. It's going to be honest. And yes, you're going to hear it straight from the Warlock's mouth.

    No fancy production. No pretending everything is perfect. If I get brain fog, you'll hear the brain fog. If I lose my train of thought, you'll hear me trying to find the bloody thing again. 😂

    That's the whole point of this podcast.

    It's real.

    I'll probably also touch on adoption, because strangely enough, that is connected to my MS story. But I won't be telling the whole story in this episode, because my adoption deserves an episode of its own.

    That story goes back to when I was a child — when I was a waif and a stray, as they used to say. My older sister was taken away too.

    And there is a much bigger story there about being taken from our mother, being adopted, and what happened afterwards. My mother told me herself, when I eventually met her, that she didn't want me to be taken from her.

    That is a story I will tell.

    But that's for another episode.

    For now, we're going back to those two little letters:

    M. S.

    What they did to my life. What they did to the people around me. And what happened afterwards.

    So if you've been following the blog, thank you.

    And if you've listened to the test podcast, thank you for putting up with the world's least fancy podcast production. 😂

    There won't be bells and whistles. There won't be loads of editing.

    There will just be me.

    The real, unedited Warlock.

    So stay tuned to mylivinghell.co.uk

    The first proper episode is coming sooner rather than later — assuming my brain fog allows me to actually go deep enough to record the bloody thing.

    Have a fantastic weekend, take care...

    And I'll see you on the other side.

    — The Warlock

    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 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 used no AI to proof read and help solve this issue so you can understand it

    Well, it's Sunday morning, and it seems that most things are back to normal. Yes, it has been quite a week. That is for sure. All hell has broken loose, and everything was restored. So I wish all the readers of this blog a very happy good Sunday morning or afternoon or evening, wherever you may be, or wherever you may be from .

    Hacked! Oh my god!

    Well yes, on Tuesday morning at one o'clock, my living hell block got hacked and taken down unfortunately. It caused me a massive stress attack and it really sent me careering downhill health-wise as well. I just could not believe somebody would want to take out a blog about multiple sclerosis. It was completely beyond me why anybody would want to do that. So yes, I spent all of Tuesday and most of Wednesday in a seriously bad place. And then on Thursday things got a little bit better. Then on Friday everything went to hell in a hand basket, that's for sure.

    Good news, bad news.

    So, along came Friday and I had to drive Albertine to the hospital. And as you know, I cannot stand driving a two-hour round trip drive completely screws me up beyond anything you could imagine. The concentration alone is a killer. So as usual we left a couple of hours earlier than we needed to because when you get to the hospital every single disability place is gone you only have to go to their multi-story car park now which is usually full. So yeah you've got to get there really early and spend just about an hour looking for a parking space which is totally insane. So we get to the hospital and I spend about 20 minutes looking for a parking space and luckily yes there was a space and this was just before 9 in the morning. So the outcome of all this was Albertine, got the rest of the necrosis removed from her finger. Yes, so she's got to go again to hospital in her for three weeks to have the rest of the dead stuff removed apparently. So yes, she got back into the car after about half an hour's risk and I managed to drive home. But of course, I got home and I am feeling really, really bad because the night before I had not much sleep at all and my bowels were in stressed out hell and if you've got MS and you have bowel issues with your MS, you know what that's like to become stressed. It's not good. It screws with your whole system. Yes, it does. From the tip of your head to the bottom of your little toe. So I'm going off the subject a little bit like I usually do. But yes, when I got home I felt like hell and then I had yet another day in bed. I was feeling incredibly ill. It just really screwed me up and I was quite brain-fogged every part of my body ached and it just seemed like it was a relentless, horrible thing, you know? If you experience it, you know what I mean, but people have never experienced it. You can't really explain how just a simple drive of an hour can make you feel so ill you That sometimes you just don't want to carry on.

    Thank you

    But the good news, the server is all sorted out and up and done thanks to the web hosting company. Thank you Zfast. And I would also like to take time out to all the people who reached out to me as well over different forms of social media. I would like to thank you for your support. It means an awful lot to me. And that is why I'm going to carry on doing this blog. If you go back maybe two, three, four months ago, one of my blog posts, I had started a podcast and it didn't go very well. But now I've decided that I'm going to do my own Living Hell raw podcast. So that should be interesting. I probably won't hold back either. I will be talking about my whole life. It's going to be quite interesting because guess what? I'm going to be talking about a lot of things that people will say, "Hey man, you believe that? You must be eccentric. Yes, I am eccentric." I'm going to be talking about things that will literally blow your minds. Yes indeed. Or is it just the MS making me think that? We will know.

    So sending all the readers of this Blog, peace, healing, love and light, and may you have a most amazing weekend.

    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@mymsjourney - 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

    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 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

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

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

    Welcome to the blog.

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

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

    For the rest of us...

    Welcome to the club that nobody wanted to join.

    Membership benefits include:

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

    There are no loyalty points.

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


    Rule Number One

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

    Your neighbour recommends turmeric.

    Your aunt swears by celery juice.

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

    Smile politely.

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


    Rule Number Two

    Never Waste Good Symptoms

    MS is incredibly creative.

    One day your leg works.

    The next day it's merely decorative.

    Sometimes your hand forgets it's attached to you.

    Occasionally your tongue joins a witness protection programme.

    Enjoy the mystery.

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

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


    Rule Number Three

    Accept That Your Brain Runs on Rural Broadband

    People ask...

    "What's wrong?"

    Nothing.

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

    My thoughts are arriving one packet at a time.

    Estimated completion...

    Three to five working days.


    Rule Number Four

    Master the Ancient Art of Looking Fine

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

    "But you look so well!"

    Thank you.

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

    Appearances can be deceptive.

    Like politicians.

    Or supermarket sandwiches.


    Rule Number Five

    Become One With Furniture

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

    You don't choose routes by scenery.

    You choose them by available seating.

    That suspicious-looking wall outside the chemist?

    Luxury.


    Rule Number Six

    Your Mobility Scooter is Now a Mythical Beast

    This isn't a mobility scooter.

    It's a steel horse.

    A dragon with indicators.

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

    ...at a legally restricted 8 mph.

    The Hells Angels nod respectfully.

    Mostly because you've blocked the pavement.


    Rule Number Seven

    Never Trust a Good Day

    A good day is wonderful.

    It is also suspicious.

    Don't ask questions.

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

    Tomorrow it may remember you're having fun.


    Final Advice

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

    Don't worry.

    Neither do we.

    We forget halfway through the sentence anyway.

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

    So laugh anyway.

    Laugh because the disease hates it.

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

    And if your legs refuse to cooperate...

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

    Probably.

    wishing everyone peace healing love and light

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)
    ☣ This Is Not A Blog About MS This Is My Life With MS ☣

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

  • Posted on

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

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

    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
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