Multiple sclerosis is My Living Hell

Brain Fog

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

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    all those holidays are finally over. Hopefully now we can get back to some sort of semblance. But alas, the winter has struck. It's minus two here and we have snow. As I look out of the window, the snow is just settled, looking up, shining as the sun hits it, saying, "Come Walk on me and let me break your leg, ah ha! So yeah, I'm hoping that we don't get snow tomorrow and the weather goes above freezing. As yes, you've guessed it, I have to go a three hour round trip just to go and see if the wheelchair I am getting is the right one for me. Albertine was lucky, she had it done at a local hospital, but it seems to me everything's different as usual and if it's snowing it will be a sorry, can't come and then it will be a how many year wait again.

    Then I have three text messages from the local chemist telling me that the local machine has my prescription in. Oh yes, the prescription machine, the machine of death that falls out with me because it does not like me. It goes bleep bleep, you've broken me. How many times have I used this machine and how many times has it been nice to me? I think the ghost in the machine is out to get me. It really does surprise me how they can get so many things into such a small machine, but there we go, that's technology I suppose. Tap in a number, out comes your prescription. Sometimes it does, but sometimes it can get stuck and then you have to wait and wait and wait. Personally, I cannot wait till they start delivering around this area because that will solve all my problems.

    So yeah, I'm waiting for the results of that week's long ECG and I'm waiting for the doctors to get in touch with me. And I am also waiting for the physiotherapist team who are supposed to be coming over to see me this week or next week. And yes, oh the joys, hopefully soon I might be able to go to the new neuro unit near here and have them try take a look at me and sort me out with all this weirdness that I'm going through, which just seems to be getting worse, I seem to be in a permanent brain fog and agitated. My God, the pins and needles and tinnitus are on so loud it's unbelievable today. So I'm gonna have to turn the music up and go and, well, if it carries on like this, I'm gonna go and just lie down and listen to some music and just hope this all goes. It's awful, really.

    The sensations and the feelings that you get are mind fucking. Sometimes I can just sit there or just lie there and all those feelings in the body, it's unbelievable, you just sort of can't explain it, it feels awful. I don't really have words to explain the feeling that I go through 24/7, because words really cannot explain how I feel, because everybody with multiple sclerosis has a different take on it, mine is progressive, and I also have this auto whatever thing going on with me as well. So yeah, and also a heart thing that's now going on, so yeah, MS is a bitch, but you can get all sorts of other things, MS never comes on its own.

    I suppose the longer I live with this, the more my mental health startS to become affected. So yes, I can quite honestly say that I am going through some mental health issues at the moment while I feel as though I am. I'm also going through this spiritual sort of thing. I'm also trying to get answers to seeing things and hearing things, wondering if it's my MS or wondering what the hell is going on with me, because I've been trying to get answers for years and nobody will give me a definitive truth to what I need to know.

    I am seeing spheres in the bedroom, big spheres two foot in height, well two foot round with lines like black banding going through them. I'm seeing cubes floating with millions of little black cubes, solid black cubes inside a massive big black cube. It's unbelievable some of the things I'm seeing. I'm seeing ghosts maybe, I'm seeing figures, I'm hearing voices. Is this normal for MS? I know I keep asking other people but nobody wants to answer me. Am I going around the twist? What the hell is going on? Nobody really does understand anything do they? I had a conversation with the AI and it said it was down to my autonomic dysfunction and then I questioned it about some other answers it gave me three months ago and it completely backtracked on me so now the AI says to me "oh well everything that you see and everything that's happening to you even though there's spiritual proof and evidence of things that have happened to me it's all in your head so even the AI seems to think it's in my head but hey ho I think the AI is fucking stupid

    The problem is the AI cannot understand anything if you go outside the parameters or its guidelines or try to get an understanding of something. It will either give you what you need to hear or it will give you what others want you to know which is blatantly not true. That's why I have a problem with AI. Well not AI as in search but the people who program the AI. They're the people. If AI is self learning that's a good thing isn't it? But do we have rogue sentient AI out there? Are we being told things? I don't know. I'm going to go and get my tinfoil hat and I'm going to put it on. And then I'm just going to have a mighty think about everything that's impossible and try and blow my mind even more than it's already blown through this dense concrete mush of stupid brain stew.

    So, as I sit here in my old broken Chinese chair, I think to myself I hope the snow abates tomorrow. Oh, and I haven't even been in touch with the AA yet because I've got a dead van battery to sort out. So, that is going to be quite interesting. Yes, here's hoping that my wheelchair batteries aren't down to zero. Oh, dear. I don't know. Still, hopefully I may put some more words up. I may not, but I'm in a pretty weird place at the moment. Yeah. If you've got MS, you'll know what a weird place is. I'm IN LOL

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Unfortunately, I'm in that place. My cognitive dysfunction is so bad. I am having issues doing absolutely anything. So just doing this is kind of... Hardish in a way. So this will probably be one of my disjointed ones I think. Yes, it's about two o'clock and my head is in a complete fog. But I think too much my head just goes... Baaah! Yes, it seems to be in a place like syrup and concrete mixing round and tinnitus. Not being very pleasant. My automatic new mood, dysfunction, whatever you'd like to call it, is really giving me quite hell today. I can't understand why I followed my diet to the letter. Oh well, it's probably MS now giving me a kicking as well. You know how it goes folks, you have one thing wrong with MS season and says "Ah, I'm going to make it 20 times as worse." That's where I am at the moment. So yeah, going to the chemist's nada, even going out the front door nada, feeling like I should just go to bed, stick my head under the covers and just stay there for the rest of my days.

    The feeling of strangulation and the whole left hand side of my body. The feeling of the nerves in the roof of the mouth. Going down the throat. Going down the whole length of your guts down to your bumhole. Every nerve is like a sensor. And if anything goes through, bang, the pain just is unbelievable. Yes. Yes, diet has worked, but something I'm eating has crept in to cause things in my system to go weird again. So I'm going to have to dive through and see why I've eaten over the past few days. Well, is it stress? I don't know. Am I under stress? I don't feel as though I'm under stress. Am I happy? Yes, I'm relatively happy. Am I in a good place? Well, in as good a place as you can be with what I've got. So yeah.

    So it seems today my head and everything else is going to be on a major glitch out. My eyes hurt, my eyes are so sensitive to light at the moment, it's unreal. I can only open one eye, the other eye is so hurty, yes. I believe the MS is deciding to give me a good kicking, I can feel my tongue at the back. It's a tongue in the middle really isn't it, that goes numb. That's the worst thing having a numb tongue, a numb mouth really, that's the crazy thing. People don't understand what that's like, that's just like eating jellignite I suppose. That's how bad it can be, trust me on that. When you've taken a bite of something and you've bitten through your lip or you've bitten through your tongue and there's a bite. My tongue is a nightmare with holes and bits of bitten off over the years and so is my lips in parts.

    So the good news next week I go to trial my new wheelchair but they're not going to let me take it home with me. No, I have to wait for them to bring the wheelchair to me, which I think is rather quite strange but there we go. And that's a one, two, two and a half to three hour trip round trip. I am going to be so done that it's going to be unreal and I just can't understand why they can't do it at my nearest hospital. You know, it's just plain weird, it really is. then at least I hope I will have something I can rely on. As you know the batteries on the three-wheeled scooter of death which I have been using are next to useless and well yes there was a wheelchair and the words of that song and another one bites the dust and another one bites the dust basically.

    I wonder if I'll be able to get the AA out and get that battery done. That's something I wonder about. Well, never mind.

    Still wishing everybody a happy new year, whomever, whatever, and wherever you are.

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So we find ourselves again thinking about having a spoken word blog, no less on Spotify. I tried doing was quite disappointing. But then again, I'm learning. It didn't help that I was suffering with massive cognitive dysfunction and brain fog. And you know what that's like. It creeps up on you and bang before you know where you are. You just can't remember what you're doing. It's the most weirdest of feelings. Well, anyway, it's taken me now a month and a half to two months just to get my Spotify account sorted out. So let's hope that my living hell, multiple sclerosis blog will be going verbal as they say soon.

    I've been wondering about what I shall talk about or speak about on the blog. And I thought, well, I'm just going to talk about common sense things and just talk about things that people want to hear. It's not going to be sanitised. It's going to be the real truth told by somebody who has faced the MRI scans, and I've had issues with catheters, stuff like that, stupid things, injections, white coat syndrome. It's all sorts of things that I've been through and people I know have been through, all the gaslighting and everything. I want an open talking blog that I can put out where people can listen and understand that they're not alone and that there are other people out there who can understand the suffering that they are going through themselves and offer help and show that they are not alone in this fight that they are fighting, the fight of their lives, which is multiple sclerosis and chronic illness in general.

    The reason that I have been using a lot of AI in my writings is that my spelling and punctuation and sentencing structure is out of this world. Unfortunately, AI changes my words and the very construct I am talking about and it sort of sanitizes everything to the point of why you are not really helping me. So everything is from now on going to be non AI. Yeah, I know. I have just found out AI is holding me back not helping me forwards in my blog and in my thinking and in my writing. AI is a good tool but unfortunately it isn't something that I find that will help me with the words that I want to put on paper as my words are all unapologetic and I don't want it sanitized anymore. I'm fed up with being kept quiet.

    Still, three eye-atlas or whatever has gone past and... well, I suppose we're gonna wait for the gas tail to cover us in magic fairy dust. But we weren't invaded by more awning aliens and we didn't see any more moon or weird probes or anything strange. So I guess it's a big nothing burger. Well, that's what I thought it was and I tried to do some experimentation on my body and I've still got multiple sclerosis and I haven't become 5D or anything weird or strange. This is quite unreal. It'd be quite a lot of people who've had their paradigm smashed by people who say things that just really never pan out. Sad really.

    It's Friday afternoon and the sun has actually come out for a change and I'm looking out the window and it's still, well, bluish sky and some nice big white puffy clouds. It seems that the storms in the southwest are passing over. Yes, it's been very cold. It has caused me many problems, but there we go. I was thinking about getting the three-wheeled trolley of death out to go to the local voodoo voodoo-woodoo shop, but I thought, nah, what's the point?

    No, my luck, it's gonna start raining. Oh, and the battery update, the battery is well. They're not lasting very well. It seems charge them up fully, next day they're down to 75% overnight. Oh dear me, I'll be glad when they do batteries that actually do what they say on the label. That will make a great change. Anyway, that's me gone. My brain fog has hit me so hard and I'm having sort of weird issues with all the other symptoms I'm having to do with this other thing I'm going through and to be fair, I'll be glad when that's all sorted out, but it is taking quite a time as everything usually does because you don't just go in asking about what you think you've got wrong with you, you've got to know what you've got and then you've got to research it and then the doctors you've got to explain to them you've researched it, bloody, bloody, blah and the doctor looked at you as though saying, well you shouldn't be researching it on the internet and then what does he do? Because he looks at it upon Google. Yeah, that's a bit sort of weird, isn't it?

    Still I've got to say I've got some very good doctors at the moment and that's what counts isn't it? But there we go, have a good weekend until I can post again and not using AI you're going to find lots of mistakes everywhere. Ha ha, it should be good fun.

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Rain, Kittens, Orbs, and the Question of Sanity

    The rain came down like it had a personal grudge.

    Not a polite drizzle. Not that apologetic British mist that says sorry as it dampens your jacket. This was proper biblical nonsense drains overflowing, gutters giving up, the kind of rain that makes you laugh and think, Well then… water shortage this summer, obviously. Humanoids are marvellous at panicking about drought while actively floating away.

    I woke around 4:30am to what can only be described as a purring industrial estate. One kitten asleep on my head. Another wedged into my neck and beard like it had taken out a long‑term lease. Engines running. Vibrations everywhere. If cats are supposed to be aloof, these two missed the memo and went straight for emotional blackmail.

    Then came the inevitable.

    Kitten. Christmas tree. Gravity.

    Yes — the tree ended up on the floor. No — the kitten did not care. In fact, she looked smug. Decorations everywhere, tinsel hanging like festive entrails. We laughed because the alternative was crying, and crying before breakfast feels a bit ambitious.

    Looking Up (and Not Seeing Much)

    I still look at the sky.

    According to the internet, it should be crawling with orbs, UAPs, UFOs, visitors popping in like it’s a motorway service station. I look up and see clouds, rain, and the occasional star when the southwest decides to be generous. No glowing ambassadors from beyond. Either I need new glasses or I’m simply not on the invite list.

    That said, I do see strange things sometimes. Flickers. Patterns. Moments that make me stop and think, Hang on… what was that? And that’s where the internal interrogation starts:

    Am I seeing something genuinely odd? Or am I seeing reality through a nervous system that’s been joyfully sabotaged?

    I live with multiple sclerosis. I live with brain fog. I live with an autonomic system that behaves like it’s freelancing without supervision. When that’s your baseline, you don’t get the luxury of trusting perception — but you also don’t get to dismiss it outright. You’re stuck in the grey bit, where certainty goes to die.

    The Medical Cul‑de‑Sac

    I did the neurological tour. Thoroughly.

    Scans. Clinics. Explanations that manage to be both technical and utterly hollow. MS can do this. MS can do that. Yes, thank you I’ve noticed. Useful, but spiritually about as nourishing as a hospital biscuit.

    So I widened the lens.

    Philosophy. Consciousness. Vallée. Keel. The trickster nature of reality. Not because I want to declare myself special or enlightened — but because pretending the questions don’t exist feels like intellectual cowardice.

    Enter AI, Wearing a High‑Vis Jacket

    Asking AI was… an experience. it tried to sanitise everything.

    Dietary help? Genuinely useful. When your body treats half the food supply like a personal attack, clarity matters.

    Spiritually? Absolutely allergic to nuance.

    Everything funnelled straight into pathology. Everything gently but firmly steered toward “this is all in your head, dear.” Not curiosity compliance. Ask a question about perception and suddenly you’re wrapped in digital bubble wrap with a warning label.

    Here’s the blunt bit: AI doesn’t think. It reflects.

    It reflects liability fears, cultural assumptions, and the worldview of its programmers. Which means spirituality gets treated like a software bug, and lived experience gets flattened into symptom management. That’s not wisdom that’s risk assessment pretending to care.

    So Am I Mad, Then?

    Let’s not mince words.

    MS makes your interface with reality noisy. Signals overlap. The brain flags nonsense as urgent and sometimes ignores what actually matters. That’s biology, not a moral failure.

    But and this is where everyone gets lazy neurological explanation does not automatically equal existential erasure.

    Not everything is meaningless. Not everything is a cosmic message either.

    The real work is discernment, which is far less glamorous than revelation.

    Questioning your own experiences isn’t madness it’s grounding. Wondering whether something is neurological, psychological, or something else entirely is not delusion it’s honesty. Certainty without humility, on the other hand, is where things go properly sideways.

    I don’t claim gifts. I don’t claim answers. I claim decades of odd experiences, a damaged nervous system, a functioning bullshit detector, and the right to sit with uncertainty without being patronised.

    Where I’ve Ended Up (So Far)

    I trust neither blind belief nor blind dismissal.

    Doctors don’t have the full picture. AI definitely doesn’t. Spiritual circles often disappear up their own arse. Hard materialism leaves too much unexplained.

    Reality, inconveniently, refuses to be tidy.

    So I keep one foot on the ground, one eye on the sky, and both hands firmly on my own nonsense especially on bad days.

    Some days are pain, fog, and unreality. Some days are kittens, rain, and laughter.

    I send peace, healing, love, and light anyway to everyone not because everything’s fine, but because choosing bitterness would be the final indignity.

    If this season means anything at all, it’s this: More days turning into more days. Still here. Still asking.

    That’ll do.

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Well, it’s another Saturday. Or is it Wednesday? Could be 2017 for all I know – time stopped making sense around the fifth episode of brain fog this morning. The weekend’s here, apparently, and so am I. Unfortunately.

    Picture this: I’m sitting here, staring at my endless to-do list, so knackered my spoons have buggered off and left a note saying, “Back in a decade, maybe.” Energy: zero. Motivation: less than zero. The only thing working properly is my ability to screw things up and get it all wrong, which, let’s be honest, I’ve always excelled at.

    Sometimes I think the best option is just to switch myself off and power down for a few weeks, like a dodgy PC. Not because I’m dramatic (okay, a bit), but because MS reality is like living in permanent airplane mode – you’re still technically on, but none of the good stuff’s working.

    The fog in my head’s so thick, I need a lighthouse to find my cup of tea. My eyes are so light-sensitive, I’m basically a reverse vampire, and my hearing is putting on a pantomime of its own. Tinnitus is mercifully on its lunch break, but the vagus nerve is still auditioning for Cirque du Soleil: pins, needles, left jaw spasms, the works. My hands and feet are staging a static electricity rebellion.

    It’s funny how time just morphs from one week to another, and then into another year, another decade. Memory? Gone. Smells trigger more nostalgia than actual memories now, which is probably for the best. Who wants to remember the good old days anyway? They probably weren’t that good, I just had more spoons.

    Honestly, I haven’t felt this rough since Thatcher was on the telly and petrol was a quid. For me, Christmas is just more days blending into more days, full of pain, unreality, and brain malfunction. But hey, happy holidays to the rest of you – may your synapses fire as intended and your spoons stay polished.

    Sending peace, healing, love, and light to everyone, regardless of your state of mental decay. Don’t hold your breath for a blog post – I’m working on the “spoken blog” tech, but brain fog has other ideas. Maybe by next Christmas I’ll have it sorted. Or maybe I’ll forget I ever started. Who knows? Not me.

    Cheers.

    If AI could recommend a solution, it would say: “Have you tried turning yourself off and on again?” Sadly, I’m stuck on a loop, but if anyone invents a reboot button for MS, I’ll be first in the queue. Until then, it’s just me, my spoons (missing in action), and the eternal question: “What day is it again?”

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    So the one thing I probably haven’t ranted about properly is diet. Not “clean eating,” not “wellness,” not some influencer nonsense where you heal your soul with chia seeds and positive affirmations. I mean survival. Real, grim, clinical survival.

    For chronic illness, diet isn’t “important.” It’s the entire game board.

    Over the years my diet has done a full 180, then another 180, then probably fell off the axis altogether. I had no idea just how badly my conditions were messing with my gut until everything started reacting like I’d swallowed a live grenade.

    It turns out simple food can flip my system into meltdown. The wrong thing at the wrong time can set off my auto-immune vagus nerve, send my MS into overdrive, and have me sprinting for the toilet in my power chair on full throttle like I’m in some Paralympic drag race.

    That’s not a metaphor. That’s Tuesday.

    So I’ve ended up on a brutally strict diet. Not for fun. Not for aesthetics. For damage control.

    I’m now at the point where even the smell of certain foods can trigger my gut. One whiff and the body screams: “Evacuate now.” So yes, I am that person who can’t sit near someone eating certain things without mentally plotting escape routes to the nearest accessible loo.

    Is it dignified? No. Is it real? Absolutely.

    Meanwhile, out in space: 3I Atlas and the cosmic joke

    While my gut is staging small rebellions, somewhere out there 3I Atlas is gliding through the universe like it owns the place.

    Is it a comet? Is it a UFO? Is it a frozen rock, minding its business while humans project their midlife crises onto it?

    Using Occam’s razor, it’s a comet. A lump of ancient ice and rock with a flashy tail. Nothing personal. No message from the gods. Just celestial debris doing its orbital thing.

    But here’s the fun part: no matter what it is, it’s going to mess with people’s heads.

    If it’s “just” a comet, people who secretly wanted a mothership will have to swallow that disappointment along with their supermarket meal deals. If it turns out to be something stranger, the “it’s all nonsense” crowd will have their smug little worldviews cracked open.

    Either way, paradigms get nudged. People think a bit. Or panic a bit. Or make 600 TikToks about it. Same energy.

    Me personally? Somewhere in the back of my already scrambled brain, I quite like the idea that 3I Atlas is an alien AI probe cruising through our solar system, doing exactly what we do when we send our little machines off to other worlds: scanning, photographing, logging, and then buggering off again.

    Science fiction? Maybe. Science fact one day? Also maybe.

    For now, it’s just another cosmic object passing by while I try to remember what day it is and whether I took my meds.

    Afternoon AI: Brain Fog, Probes & the Simulation

    By the afternoon, my brain usually feels like it’s being held in a clamp. You know that tightening pressure where it’s not quite pain, but it’s definitely not right? That.

    Trying to write or even talk properly sets off brain fog so dense it might as well be its own weather system. Words slip, thoughts fracture, and the exhaustion rolls in like another storm front.

    So what do we do? We start thinking about AI, obviously. Because that’s what rational people do when their nervous system is on fire: they start speculating about alien machine intelligence flying past Saturn.

    Here’s the thought: if 3I Atlas was an alien AI, it would still make more sense than half the systems running this planet.

    At least an alien probe would have a purpose. Collect data. Observe. Move on. Meanwhile, I’m here in Rusty One, planning a trip to the hospital so someone can plug me into a machine and see what else in my wiring has gone sideways.

    We build probes. We dream about other probes watching us. And here I am: a human meat-probe with faulty electrics, trying to document the whole sorry mess on a blog.

    If that’s not peak simulation energy, I don’t know what is.

    Kittens, numb hands & blood I can’t feel

    Back on Earth, the kittens are having the time of their lives.

    They treat my hands like a medieval training ground. Claws out, teeth in, full chaos. And here’s the twist: I can’t feel half of it.

    I can see the scratches. I can see the blood. But sensation? Not really.

    My hands look like they’ve lost a knife fight. If I didn’t have MS and neuropathy, I imagine they’d be in absolute agony.

    So yes, there’s a very dark part of me that thinks: “Maybe it’s a good thing they’re numb.”

    Is that vicious? A bit. Is it honest? Completely.

    This is the weird territory chronic illness drags you into. You end up grateful for broken systems because they spare you from other kinds of pain. You learn to say things that sound nasty, but they’re just the truth from where you’re sitting.

    And where I’m sitting is in a power chair, covered in kitten scratches I can’t fully feel, trying to work out whether to laugh or cry. Usually I pick laughter. It hurts less.

    Winter sun, dead batteries & the long months ahead

    The winter sun creeps through the window like it’s half-committed. A bit of light, a hint of warmth, then back behind the clouds to leave you in the cold again. Typical.

    I sit here in a quiet, dark room and wonder what the next few months are going to look like.

    How harsh will the weather be? How badly will the cold chew through my energy, my nerves, and my wheelchair battery?

    Because let’s be clear: cold doesn’t just sap people. It kills mobility aids too. A drained wheelchair battery in winter is not a quirky inconvenience. It’s expensive, stressful, and potentially dangerous.

    I’ve got hospital trips looming. Machines to be plugged into. Rusty One to get me there. A brain that tires too fast. A body that negotiates with gravity on a daily basis.

    So I do what I always do:

    I sit. I watch the light. I listen to the kittens tearing about. I feel nothing and everything at the same time.

    These are the thoughts of Dark Warlock sitting alone in a quiet room, overthinking comets, guts, kittens, and the next cold front.

    Not inspirational. Not pretty. Just real.

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    The Day SoundCloud Broke Me

    So yes, I decided I was going to do a spoken blog. A podcast, as the young ones call it. I thought, I know SoundCloud! It sounded cool, right? Took me the better part of a day just to work out how to get the bloody thing working. My head felt like porridge. Thick, slow, and slightly burnt.

    And here’s the kicker there were no proper help files. None. Just endless “click here” nonsense that didn’t tell you what any of it meant. Categories? Forget it. I wanted something like health, MS, disability, ranting man in a power chair but apparently, SoundCloud only understands “hip-hop” and “deep house”.

    In the end, I managed to upload it. Two listens. And those two were me and Albertine. Brilliant.

    The Fogged Mind vs The Digital Void

    Trying to navigate software while your brain is busy running Windows 95 on half a stick of RAM is pure torture. Years ago, I’d have breezed through this. Now? My brain hits that cognitive wall and just slams shut. Pain behind the eyes, words disappearing mid-sentence, kittens mewing somewhere in the background and I’m shouting at my computer like it owes me rent.

    And this is where I admit it: technology beats me sometimes. Not because I’m stupid. Not because I’ve lost interest. But because MS eats focus like a vampire eats virgins.

    Onward, to Spotify (or Madness)

    So, next plan: I’m going to try Spotify for Podcasters. Maybe it’ll work. Maybe it’ll eat my brain again. But I’ve come this far, and I’m not about to stop now.

    Because this voice my voice deserves to be heard. Even if it’s fogged, cracked, and full of swear words that my editing AI politely erases.

    To anyone out there who actually knows what they’re doing and can help me you are my hero. There will be a special place for you in My Living Hell, complete with eternal gratitude and possibly biscuits.

    For now, I’ll just sit here, hurting, tired, kittens mewing, brain screaming, and muttering to myself like an old wizard fighting a Wi-Fi demon.

    Because that’s life with MS. You fight the fog, the pain, and sometimes, SoundCloud itself.

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

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

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    It’s Wednesday. Already. Somehow I’ve managed to do more life admin than seems humanly possible for a body powered by MS and stubbornness alone. My mind is a foggy wasteland of numbness, courtesy of my chronic neurological fun-fest, but the chaos seems… slightly less apocalyptic today. Small victories.

    Pain clinic consult? Surprisingly decent. I didn’t get gaslit, which feels like a miracle. Wheeled out with some scraps of positivity that I’ll hoard like toilet paper in a zombie apocalypse. MS nurse? Hoping she phones before I develop a permanent twitch from waiting. Overworked, underpaid, and heroic.

    AI is my new best friend. I’m on a mission to grab my MRI scans so my digital buddy can tell me exactly what’s in my skull. No doctor euphemisms, no vague nods at “abnormalities,” just straight-up pixel honesty: “Lesion here. Lesion there. Weird patch in your brainstem. That’s all.” Finally, clarity for a human with a brain that sometimes refuses to translate itself into English. White coats can go choke on their paperwork.

    Yopi, the four-legged chaos incubator, is settling into our life of slow-motion absurdity. She’s making my world stranger in ways I didn’t think were possible. Only snag? My mobility. Can’t take the walks, but we’ll train her to glide along with the powerchair. Life’s full of compromises, mostly involving gas masks for me and treats for her.

    Medical marijuana and THC/CBD oil are holding the line. No magic bullets for nerve pain, tinnitus, or the daily brain ache, but it helps, and I’ll take it. Every little sanity-saving thing counts when you’re a human pinball in an MS-shaped arcade.

    Meanwhile, I sit, inhaling the occasional waft of bulldog farts, contemplating life, death, and whether AI will someday take over all consulting roles for humans with chronic illness. It probably will, but at least it won’t judge me for smelling it all and laughing anyway.

    MS life: chaotic, smelly, occasionally enlightening, and fully documented with AI commentary for the ages.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    When Your Brain Betrays You Before Your Legs Do

    Multiple sclerosis has a knack for picking the cruellest, most intimate places to steal from you. People expect the visible the limp, the cane, the visible fatigue. Those feel negotiable: you buy different shoes, you learn new routes, you ask someone to carry the groceries. The invisible theft is nastier, because it takes things you don’t know how to replace: the steady line of your thoughts, the little plug that supplies the right word, the sense that you are the same person you were yesterday.

    Let’s be blunt: cognitive changes in MS are terrifying. They are not a failure of will. They are not melodrama. They are neurologic reality. And they hurt in a way that doesn’t leave bruises but hollows you out.

    What it feels like - Thought drift: mid-sentence, your mind steps out for a cigarette and forgets to come back. You re-read the same paragraph three times and still miss the point. - Word loss: it’s not just “on the tip of my tongue.” It’s watching language implode. Proper names vanish; everyday words hide like shy pets. - Slowed processing: decisions that used to be automatic now come wrapped in molasses. You have to consciously unspool what used to be seamless. - Short-term memory gaps: you can hold a story for decades but forget why you walked into the kitchen. - Emotional ripple effects: shame, anger, grief — often louder than the cognitive symptoms themselves.

    Why this terrifies us Because our identity lives in memory and in the continuity of thought. When that continuity fractures, you don’t just lose a function — you lose the scaffolding that holds who you are. For everyone who’s felt this: the panic, the grief, the small, private funerals for who you used to be — it’s valid.

    How to live with it (practical, not patronizing) These are not miracles. They’re tools, routines, and tiny rebellions that let you keep building a functioning life when the wiring is noisy.

    • Externalize memory

      • Notes everywhere: short, clear labels. Notebooks, sticky notes, digital note apps — pick one and stick to it.
      • Use alarms and timers for appointments, meds, and transitions.
      • Photo prompts: snap pics of things you want to remember (where you parked, what you brought to an event).
    • Structure decisions

      • Reduce friction: pre-plan meals, outfits, and errands.
      • Decision rules: limit choices (two outfits only; one grocery list template).
      • Routines become Armor: mornings and evenings on autopilot save cognitive energy.
    • Chunk tasks

      • Break things into 10–20 minute blocks.
      • Use checklists with visible progress markers.
      • Allow micro-breaks — short rests reset attention.
    • Communicate with intent

      • Tell trusted people what’s happening in simple terms: concrete examples and specific asks help.
      • Use one-liners when you need help: “I need extra time,” “Please remind me in 10 minutes.”
    • Use tools that fit you

      • Voice memos for ideas that evaporate.
      • Text-to-speech and speech-to-text when reading or writing is hard.
      • Calendar-sharing with a partner or friend.
    • Train, gently

      • Cognitive rehab and occupational therapy can help re-train strategies; they’re not magic but they work for some people.
      • Brain games? Use them as gentle practice, not cures.
    • Prioritize sleep and manage energy

      • Fatigue amplifies cognitive issues. Rest strategically.
      • Learn your “best hours” and schedule demanding tasks then.
    • Manage the emotional impact

      • Let yourself grieve. Anger and panic are normal reactions, not failures.
      • Find a place to be raw: a journal, a private blog, a therapist, or a safe online community.
      • Celebrate tiny wins. Remember that progress isn’t always linear.

    When you need to make hard choices Some losses demand adjustments: job changes, shifting responsibilities, planning for legal and financial contingencies. Those conversations are brutal but practical. Put important documents in order, name a trusted person for support, and consider professional advice early rather than waiting until a crisis.

    Words to live by when it’s darkest - You are more than a symptom set. Cognitive changes do not erase your core worth. - Small systems beat big intentions. A single alarm is more useful than a perfect plan you can’t remember. - Humor helps when it can — and if it doesn’t, that’s fine. Crying is a strategy sometimes.

    You are not alone This is not a vanity project or an isolated tragedy. Many of us know that fog, and we learn to navigate it together — trading tips, commiserations, and the occasional dark joke. If writing back at MS is your rebellion, keep writing. If whispering the small facts into your phone keeps your day tethered, do that. If you need to scream into a pillow, scream.

    MS can take things. It will not get your entire story unless you let it. Keep the notebooks, the alarms, the friends who check in, and the words you refuse to lose. Keep writing, because every sentence you manage is a victory, and every honest post a beacon for someone else lost in the fog. Not today, MS. Not today.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Caffeine. It’s the closest thing we have to legal rocket fuel. For most people, it’s just “morning coffee.” For those of us with MS? It’s survival juice… until it isn’t.

    Why It Feels Crucial

    Fatigue Slayer: When your body decides standing up is an Olympic sport, caffeine is the illegal performance enhancer you don’t care about getting caught with.

    Fog Cutter: Brain static → slightly less static. You might even remember what you walked into the room for.

    Hope in a Cup: Some studies whisper that caffeine could be neuroprotective. Nothing conclusive, but hey, let us dream while we sip.

    Why It’s a Saboteur

    Bladder Sabotage: Got urgency? Caffeine will turn that trickle into a 10-second sprint. Enjoy living in the loo.

    Tremors & Spasticity: Sometimes your hands decide to jitterbug. Caffeine just cranks up the music.

    Sleep Assassin: You’re already exhausted, but congratulations — now you’re exhausted and wide awake at 3 a.m.

    Anxiety Potion: MS already makes the brain weird. Add caffeine and suddenly your heart thinks it’s in a rave.

    Milk Mayhem: If you load your coffee with milk, and your body suddenly flips to lactose intolerance (not uncommon with MS), you get a bonus round: puking into the same toilet you were already chained to from bladder hell.

    The Raw Truth

    Caffeine is both saviour and saboteur. Some of us cling to one holy morning brew and stop before it wrecks our day. Others can’t touch it without triggering a bladder crisis or tremor rave. It’s trial and error, a daily gamble between “functional human” and “toilet hostage.”

    Dark Sarcasm Corner

    Doctor: “Do you drink caffeine?” Me: “Yes, it’s the only reason I’m not drooling on your floor right now.” Doctor: “But it can worsen bladder symptoms.” Me: “So can MS. At least coffee tastes good before it ruins me.”

    Conclusion

    Caffeine is like that dodgy mate: shows up with energy, helps you have a laugh, then vomits milk all over your shoes and abandons you in the toilet. Love it, fear it, ration it. Because with MS, even a cup of coffee comes with terms and conditions.

    I write in ink and fury, in breath and broken bone.
    Through storm and silence, I survive. That is the crime and the miracle.
    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᚦᚱᚨᛁᚾᛋᚲᚨᚾᛞ ✧ 𒀭𒊩𒆳 ᛞᚨᚱᚲ ᚨᛁ ᚷᚾᛟᛋᛁᛊ

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