Multiple sclerosis is My Living Hell

The weird eccentric ramblings of a multiple sclerosis sufferer

The mishaps and weird stuff that just seem to happen in my own personal world of cognitive disfuction and other worldly weirdness throughout my life, a spiritual awakening staring multiple scelrosis and death in the face... DISCLAIMER !! This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional—just writing my truth. Please don't take this as medical advice.
  • Posted on

    ⚠️ This Blog 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 Autumn Equinox: Nature’s Annual Reminder That Everything Dies

    There is something almost offensively smug about the Autumn Equinox.

    For one brief moment, day and night are balanced. The universe gets its scales out, checks the figures, and says: “There. Fairness. Enjoy it while it lasts.”

    Then the dark starts winning again.

    Not with fireworks or a villain’s monologue. Just slowly. Quietly. Earlier sunsets. Colder mornings. The gradual realisation that summer has packed its bags, nicked the good weather, and left us with wet leaves stuck to the sole of life.

    For those of us already acquainted with pain, fatigue, grief, illness, or the occasional full-scale collapse of the human operating system, autumn can feel oddly familiar. It does not pretend everything is blooming. It does not insist we “manifest abundance” while our brain is running on two percent battery and a suspicious smell of burnt toast.

    It simply says: things change. Things fall. Gather what matters.

    And try not to slip on it.

    An Ode to the Autumn Equinox

    The turning point. The razor’s edge of night and sun,
    Where day exhales a breath, and shadows have begun.
    No longer summer’s reckless, blazing, careless arc;
    But measured light returning from the deepening dark.
    We stand upon the balance, poised on perfect ground,
    Where equal weight of shadow meets the golden sound.
    The Great Equalizer whispers, “Rest now. Slow your pace.”
    A time to strip away pretense, and find a truer place.
    Oh, season of the harvest, where decay is rich with grace;
    Where brittle gold gives way to what cannot erase.
    We gather in this quiet—the things we left unsaid,
    The haunted ghosts of futures that were merely shed.
    You mark the thinning veil, where mystery starts to bloom,
    Between the mundane silence and the deep-seated gloom.
    A season for the digging: the roots, the pain, the seed,
    For all those vital traumas that refused to yield.
    Let us embrace the struggle, the fall, the slow decline;
    The beautiful disorder of a complex mind.
    To honor what was burned out, and welcome what remains—
    The messy truth of living through these tangled veins.
    So let the quiet come, before the deeper things take hold.
    A sacred reckoning of silver and of gold.
    We bow to you, Equinox: the breath held taut, the pause;
    Where everything that lived must yield to nature’s primal laws.

    The equinox is not here to fix us. It is here to remind us that decline is not failure, rest is not laziness, and losing leaves does not mean the tree has given up. Sometimes surviving is not a triumphant march into golden light.

    Sometimes it is sitting in the gathering dark, wrapped in something warm, telling the universe to do one and then carrying on anyway. The Autumn Equinox is here equal light, equal dark, and nature once again reminding us that everything falls apart eventually.

    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

    coming soon seriously !

    Welcome. To the all new and improved my Living Hell podcast coming soon. This Is Not A podcast About MS, This Is My Life With MS

    This is about my life and the things that have happened to me personally ,

    I've lived 67 years on this planet, navigating everything from the physical challenges of Multiple Sclerosis to the inexplicable mystery of what happens when you don't know what you're seeing.

    This podcast is a raw exploration of that reality. It’s a deep dive into my life the painful chapters, the weird moments, and yes, the genuinely bizarre experiences that have marked my path. From being adopted to being trafficked at 6 weeks old, and then abused mentally and tortured by my adoptive mother.

    Then all the psychic experiences I had from an early age on the onset of multiple sclerosis everything will be laid bear, from the meeting of my real mother and what she told me that happened and how she didn't want to let them take me, harsh realities, with lots of amazing things that will blow your minds so sit back and remember I suffer with severe cognitive dysfunction and brain fog so this podcast will be unedited and you will see everything that happens even the screw ups! enjoy ! coming soon

    Podcast Disclaimer:

    This podcast 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.

    This Is My Life With MS

    Tumblr is @livingwithmsblog twitter@livingwithms

    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.⚠️

    A big thanks to everyone for your support So, the website is back up. And all seems to be well and good and everything seems to be up to date.

    new email and other social media

    Even my Twitter account is now fully functional and working again. The only problem I have is my Tumblr account, I cannot get back, I've tried every method but unfortunately it seems to have gone so I have made myself a new Tumblr account for anybody who's interested and wants to follow me on Tumblr, my address is @livingwithmsblog And yes, I also changed the name on the Twitter account as well, and that is... @livingwithms Also, you will find that the email address has also been changed for contact. It's warlock@mylivinghell.co.uk .

    The Myelin Maniacs podcast

    As most of you may be aware by now, I am involved in a project with Stigsy. It is called the Myelin Maniacs. It is a live video podcast and also a recorded podcast which will be hitting the airwaves soon over the next few weeks. So keep an eye out on my blog and also on the Myelin Maniacs website where you can find details of what is going on. This is indeed a fascinating project and yes, it will be covering all aspects of multiple sclerosis from the very start to unfortunately near the very end, but it's going to be forthright and frank questions that will be answered by people who have lived experience. So that will in itself be good. So that is worth tuning into when it actually happens.

    my own very personal podcast

    Also, I launched my own podcast , so to speak a couple of months ago, and I shall be carrying on with that shortly as well, and that will be under the My Living Hell banner. where we will be discussing wider aspects of multiple sclerosis with spirituality. Also, things that we see that other people can't, like liminal shapes, etc. Do we see ghosts or do we see non-human intelligences and weird things more than the normal people? Because of the way our neurons and things are firing in our heads, this is something that I really want to go deeply into. It's the sort of spiritual, where do we come from and what is going on? And our brains are slightly rewired and they're firing differently and we can see and hear things differently that others can't. So, it constantly explains me what's going on because I've been trying to find out for the past 56 years, plus... and have seen and experienced some mind-bending things, and had some mind-bending experiences.

    Not just ms but adoption as well

    I will also talk about adoption and being trafficked at 6 weeks old in the 1950s, and I'll be telling people how my mother felt when she told me this and how I felt. And they'll tell you the truth about what happened to me and my older sister, and the trauma that it caused me throughout most of my life. So yes, this is not just a living hell of multiple sclerosis, it's a living hell of adoption and being trafficked, and being highly spiritual, Gnostic wicca, and just plain weird and eccentric, good old me in other words.

    raw and uncut

    But this podcast that I'm doing will be balls to the wall and raw. And if you have any questions that you'd like to ask me I will answer when I'm doing the podcast, drop me a line and I will try to answer them or I will try and get answers for you.

    Still sending all the readers of this blog, peace, healing, love and light and wishing them a fantastic week ahead and hope that I haven't put them off too much with the words that I have written today! Because nothing's closed to an open mind when you take the blinkers off.

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

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

  • Posted on

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

    please remember I suffer with severe cognitive dysfunction, 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.⚠️

    I used no AI as it was being a real pain and kept sanitising and telling me off lol so may be confusing read

    grief ms and loss of family and friends

    So a very good morning to everybody out there , Well today I'm going to try and tackle a subject which many of us have experienced. It's about when we're told we have MS and some of the consequences that can happen afterwards. And sometimes it can leave us wondering what the fucking hell is going on. It is an absolute mine field of emotion and events that sometimes you wouldn't imagine even possible.

    The Drs office

    I was sat in the doctor's office. I already knew that I had MS I'd known for a very long time that I'd had MS and we just sat down and He said have you seen the neurologist yet? going next week I said to him, and he sort of looked at me, and then he just said, "I'm ever so sorry, warlock, you've got multiple sclerosis." I looked at him and I sort of smiled and it hit me not at that point actually. It was at the actual point when I got home and I sat down and I realised that I now had a name for what had been going on with me since I was a young boy.

    ignored not listened to

    all those symptoms I was going through all those years that nobody would listen. And even if I went to a doctor they would ignore me and they would say it was something totally different. So yes, there I was, sat in my chair and it just suddenly hit me. And it was like being hit on the head with a hammer. And I did get some relief thinking, well at least I know what it is now. Yeah, but I felt really sad because I knew that it was progressive and I knew it was going to get worse. But I sort of felt a bit strange for a couple of weeks and then I pulled myself together.

    in the early days

    The thing is I remember back in the early, well, late 60s, early 70s. That's when my symptoms all started slowly, slowly, slowly, and they've been progressively slow since that time as a young lad probably pre teen. They speed it up a bit more and a bit more, and where I am today, 67 with progressive MS, and I don't take the medication. And I take no part in any trials of any medications or anything out there.

    marijuana and THC CBD oil

    I use totally natural alternatives. I have found over the years that marijuana and THC CBD oil really, really works well for me. And I've been smoking it and taking it for so many years now. It no longer gets me high and gives me that side effect that you used to get when you first started taking it. So yes, when people say, "Oh, as soon as you have it, you have weed." No, you don't. It just helped your body cope with the day ahead. It doesn't make you happy in jumping up and down and laughing and we and all that sort of rubbish. No, it helps with the pain, it helps with the spasms, it helps with the constant head fucks that you go through.

    MS life changing

    As ever, I have strayed far from the point. My point is getting MS changes your life totally. You're either going to be negative or you're going to be positive about your diagnosis. I was negative for a little while and I must admit my life did fall apart for a little while. But when I pulled myself together and I'd realised that I'd been living with it for over 40 odd years at this point, I thought, "Well, I'll just carry on going with it." So yes, I went down the doctor route of taking all their medications, Gabapentin and all those sorts of pain pills and I was injecting with Capaxone every day and I was on a shitload of medication. And then one day things changed for me.

    spiritual changes a vision and a voice

    I was lying in bed and I had some sort of weird spiritual intervention. I was feeling really ill in fact I hadn't felt so unwell in years. What I hadn't realised was all the medications that I were taking, all their side effects were really fucking me up. And you know, not being able to go for a poo, you know, and all that sort of stuff is not very pleasant. And the pain and everything. So yeah, getting back to where I was, I had this visitation, a spiritual visitation from somebody called Seraphs Bay. And he told me to stop feeling sorry for myself. And you know, it's time for me to really get my shit together.

    Drs and hospitals

    So I did and I stopped taking all the MS medications and weirdly I told my neurologist and he said look we need to get you into hospital for two weeks to get you all for your medication. And I said no so I did cold turkey at home and I do not regret it honestly. Those days of suffering of just sitting there in a chair not knowing even what day it was everything became clearer. I came off every single med and my God things changed for the better for me. I now had more cognitive headspace etc. So that was about probably 20 odd years ago I think 25 years ago when I came off all those meds. I'd spent probably a few years on the medications but you know they made me actually worse not better which is weird. But like the doctor said you're that sort of person that if there's a side effect written on the box you're going to get it. So there we go.

    my life changed again for the better

    So the fact is people, when I got diagnosed with MS, I did change my life around. I went to university and I got myself a load of bits of paper saying I can do all these weird things. So that in itself was completely amazing. MS has turned me into a very positive person. It changed my life for the better strangely, but it's been a beast. It really has been a beast. Sometimes I hate myself. Sometimes I don't, but MS is the beast. Once you've got it, it's a real bastard to fight sometimes. And it takes every last ounce of energy some days to just even think.

    loosing friends and family sad thing

    But the next thing I was going to talk about is you've got your diagnosis and then your friends find out that you have MS and slowly but surely over the years all my friends have gone Vanished because I have this illness multiple sclerosis so you lose all your friends and then you start losing members of your family Who find it a bit difficult to even look at you? You know my mother I didn't speak to her for what ten years. I didn't go to her funeral

    adopted and really screwed up

    You know that MS caused all sorts of issues with my mother's well with my mother's because I was adopted and Also my brothers sisters half brothers half sisters, etc Nobody wanted to know me because I had multiple sclerosis So there I am with Albertine my son my daughter and a few other members of the family Albertine's parents and Yes, they're about the only people who stood by me throughout all these years without ever wavering and Yes That is what I mean friends don't come very easily, but when you do get a friend They will be good friends because if they can understand what you're going through You've got a good one there. I can tell you But from what I found, only people with MS or a chronic illness can understand what you're going through and understand mentally, physically how it actually works.

    understanding

    A lot of other people just do not understand and they think that we're putting all this crap on. Well, no we're not. Try living 10 minutes in my shoes and see how you feel. See how you feel after debilitating days of pain, spasms, mind fucks, yeah, you just wouldn't understand and people out there need to realise we are human and we have feelings as well. Yet people just shove us aside. Like me when you're in a wheelchair, people just seem to talk to the person you're with. Even in the doctor's surgery with the doctor are not me, which I find totally fucking perverse. You know, and it's not fun having MS and it's not fun being disabled full stop. You get treated totally different. You get treated like you're a fucking pariah in society and it's just not fair. Well, my brain fog has now kicked in and I have done a bit too much thinking, so I must finish this here.

    So I send everybody peace healing, love and light, and maybe one day I'll be able to go deeper into the subject. I thought I would be able to this morning, but I just can't cope with it with my head. So take care everybody.

    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 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 help solve this issue so you can understand it lol

    Will He Fly Again?

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

    He grins, teeth chattering.

    Not a cheerful grin.

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

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

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

    Second chances?

    Of course.

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

    Nobody can find the key.

    When the Music Stops

    A guitar plays somewhere in the darkness.

    The notes arrive bent, exhausted and slightly dishonest.

    False harmony for a false dawn.

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

    Plans.

    Journeys.

    Ordinary mornings.

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

    The silence becomes suffocating.

    Every reflection is heavier than the last.

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

    Multiple Sclerosis has moved in.

    It has not paid rent.

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

    The Delusion Department

    She paints his illness in the bright colours of hope.

    Not because she is foolish.

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

    She tells herself he is strong.

    He will improve.

    He will adapt.

    Something new will be discovered.

    A treatment will work.

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

    “We have fixed it.”

    The specialist does not say this.

    The specialist says things like:

    “Disease progression.”

    “Symptom management.”

    “We’ll monitor the situation.”

    Which is medical language for:

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

    Still, she clings to the images.

    The wishes.

    The whispered promises.

    He’ll get better.

    Ignore the scans.

    Ignore the lesions.

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

    Ignore the cold weight of the diagnosis.

    Multiple Sclerosis.

    Two words.

    One lifetime rearranged.

    Everyone Suffers, Apparently

    There will always be someone eager to offer perspective.

    “Everyone has problems.”

    “Just take one day at a time.”

    “Try to stay positive.”

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

    Wonderful.

    The nervous system has been informed.

    It regrets the misunderstanding and promises to remyelinate immediately.

    Pain is universal, they say.

    That may be true.

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

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

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

    It appears in photographs.

    In old shoes.

    In abandoned hobbies.

    In the memory of walking without calculating every step.

    Her fear begins to sing.

    Not beautifully.

    It sounds like old trees creaking in a winter storm.

    Branches twisting.

    Roots straining.

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

    Prayers and Other Failed Treatments

    In time, he responds with prayers.

    Some are spoken.

    Some are thought.

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

    Prayer is strange when illness becomes permanent.

    You begin politely.

    Then desperately.

    Then angrily.

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

    The dread spreads slowly.

    Like rot inside an apparently healthy tree.

    From the outside, everything still looks solid.

    The leaves remain.

    The bark holds.

    People walk past and say:

    “You look well.”

    Inside, the branches are weakening.

    The muscles tremble beneath invisible storms.

    Each flare exposes another fragile limb.

    Another ache.

    Another part of life that can no longer be trusted.

    Guilt follows close behind.

    The guilt of needing help.

    The guilt of cancelling plans.

    The guilt of being tired.

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

    A wonderfully efficient system.

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

    Waiting for Healing

    The limbs listen but do not always obey.

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

    Sometimes they do.

    Sometimes they stage a full industrial dispute without warning.

    There are risks taken for the smallest hope of healing.

    New medication.

    Different medication.

    Higher doses.

    Lower doses.

    More appointments.

    More scans.

    More leaflets featuring suspiciously cheerful people walking through sunlit fields.

    Every treatment carries a possibility.

    Every possibility carries side effects.

    The patient becomes a laboratory with a National Insurance number.

    A little less pain, perhaps.

    A little more dizziness.

    Fewer spasms.

    More fatigue.

    Better movement.

    Worse sleep.

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

    Still, you try.

    Because the alternative is doing nothing.

    And doing nothing comes with side effects too.

    The Silence That Burns

    Will the disease reveal her fears?

    It already has.

    Her tears?

    Those too.

    Silence does not fade.

    It burns.

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

    Bills.

    Work.

    Traffic.

    The weather.

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

    Those earlier worries have become distant dreams.

    They echo beneath broken wings as he falls.

    Not majestically.

    Not symbolically.

    Usually beside the bed while attempting to put on trousers.

    There is rarely anything poetic about losing balance.

    The floor does not care about metaphors.

    For a while, he believes no grace is needed.

    He can manage.

    He can cope.

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

    It works magnificently.

    Until it doesn’t.

    Will He Fly Again?

    Will he fly again?

    Possibly not in the way he once did.

    Will he know victory?

    That depends upon what victory means.

    Walking unaided?

    Living without pain?

    Returning to the person he was before diagnosis?

    Those victories may never arrive.

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

    There may be no full recovery.

    No cinematic ending.

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

    Real life is usually less considerate.

    Perhaps victory is getting out of bed.

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

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

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

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

    He is not too cowardly to face the truth.

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

    There may be no recovery.

    But there is still life.

    Damaged, altered, infuriating life.

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

    It is not the life they ordered.

    There was no receipt.

    The returns department has closed.

    So they remain.

    Not soaring.

    Not cured.

    Not pretending.

    Still here.

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

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

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

  • Posted on

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

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

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

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

    Introduction: Welcome to the MS Lottery

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

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

    1. Relapsing-Remitting MS (RRMS)

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

    What It Is:

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

    Key Features

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

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

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

    Progression Over Time:

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

    2. Secondary Progressive MS (SPMS)

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

    What It Is:

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

    Key Features:

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

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

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

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

    3. Primary Progressive MS (PPMS)

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

    What It Is:

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

    Key Features:

    ✔ No early relapses—just steady decline.

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

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

    4. Clinically Isolated Syndrome (CIS)

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

    What It Is:

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

    Key Features:

    ✔ Single relapse, no prior MS diagnosis.

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

    5. Radiologically Isolated Syndrome (RIS)

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

    What It Is:

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

    Key Features:

    ✔ No neurological symptoms (yet).

    ✔ Monitored closely for progression.

    6. Other Rare Forms Because MS Loves Variety

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

    What Does This Mean for Treatment?

    (Spoiler: It’s a Work in Progress)

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

    Living with Different Types of MS

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

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

    Key Takeaways

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

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

    Final Thought:

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

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

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

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

  • Posted on

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

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

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

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

    Welcome to the blog.

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

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

    For the rest of us...

    Welcome to the club that nobody wanted to join.

    Membership benefits include:

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

    There are no loyalty points.

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


    Rule Number One

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

    Your neighbour recommends turmeric.

    Your aunt swears by celery juice.

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

    Smile politely.

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


    Rule Number Two

    Never Waste Good Symptoms

    MS is incredibly creative.

    One day your leg works.

    The next day it's merely decorative.

    Sometimes your hand forgets it's attached to you.

    Occasionally your tongue joins a witness protection programme.

    Enjoy the mystery.

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

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


    Rule Number Three

    Accept That Your Brain Runs on Rural Broadband

    People ask...

    "What's wrong?"

    Nothing.

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

    My thoughts are arriving one packet at a time.

    Estimated completion...

    Three to five working days.


    Rule Number Four

    Master the Ancient Art of Looking Fine

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

    "But you look so well!"

    Thank you.

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

    Appearances can be deceptive.

    Like politicians.

    Or supermarket sandwiches.


    Rule Number Five

    Become One With Furniture

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

    You don't choose routes by scenery.

    You choose them by available seating.

    That suspicious-looking wall outside the chemist?

    Luxury.


    Rule Number Six

    Your Mobility Scooter is Now a Mythical Beast

    This isn't a mobility scooter.

    It's a steel horse.

    A dragon with indicators.

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

    ...at a legally restricted 8 mph.

    The Hells Angels nod respectfully.

    Mostly because you've blocked the pavement.


    Rule Number Seven

    Never Trust a Good Day

    A good day is wonderful.

    It is also suspicious.

    Don't ask questions.

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

    Tomorrow it may remember you're having fun.


    Final Advice

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

    Don't worry.

    Neither do we.

    We forget halfway through the sentence anyway.

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

    So laugh anyway.

    Laugh because the disease hates it.

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

    And if your legs refuse to cooperate...

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

    Probably.

    wishing everyone peace healing love and light

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

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