Multiple sclerosis is My Living Hell

chronic illness

All posts tagged chronic illness 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.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content Good morning, good afternoon. Fellow humanoids and nhi out there.Storm clouds gather over Southwest England while daily life becomes a battle against malfunctioning pharmacy machines, failing vehicles, autonomic dysfunction and chronic illness. Alongside these earthly struggles comes reflection on UFO/UAP disclosure, paranormal research failures and the search for answers in a world growing increasingly strange.

    head storms and rain clouds

    Looking out the window at the moment there are nothing but miles and miles of dark clouds surrounding us. Absolutely everywhere! And well it hasn't rained but it's looking like it's going to blow a massive rainstorm down here in the southwest of England at some point today. Hopefully it's going to pass over so I can go out on the three-wheeled trolley of death as I need to go to the chemists. Yes, going to the chemists is like, well, a trip in itself.

    chemists machine of much hope

    I suppose I will be dealing with the machine at the chemists, the machine of death. It does not like me, no. You can guarantee I'm going to put my code in and it's going to break down and make some very strange weird stupid noises. As it is when I go in the chemists, they look at me strangely, as my prescription always seems to break their machine. Yes, it is a thankless task. Well, you can go in it before the chemists opens as it has an outside wall dispenser, and that machine is even worse. It has caused me much problems over the past few years, I can tell you, and has caused me many moments of swearing as well. Yes, when your medication gets stuck and you're in desperate need. Yes, it's always the same. You cannot beat the human touch and over the counter service when they have enough staff on. Yet that is another thing. As chemists these days, the more automated they become, the worse they get. Just employ more staff. It's that simple. Then you won't have queues. I've lost count how many other people's prescriptions I've also had as well mixed in with mine. Must be three or four over the past year alone. But we live in hope that things will get better and yes, things will be a happier time when we arrive there, that's if it's not raining of course on the other hand.

    poor rusty one

    Well, the sad news is the Van Rusty one is off the road. It looks as though we have a problem with a sensor. And that makes the vehicle run lumpy, I think it's the air management system sensor somewhere. And that really does piss me off, because we only just had a new starter motor fixed to it. And when it goes for its MOT, I think I'm looking at a bill of well over 500 to 600 to 700 pounds. But such is life when you live down here, the salt air really does tear through and make the old vehicle get very rusty.

    poor d1

    And then of course there is our other van, D1. This is the specially wheelchair adapted van and we have had to pay out loads of money on this as we've had two injectors go in the past year which was very unfortunate for us but there we go. This is my wheelchair transport vehicle that I bought over ten years ago. still going quite well but there we go. We have had to put that on trickle charge as when we needed to go to the vet the other day to get the cats there Injections so they can go into boarding kennels or even go outside. So it seems We found out that D1 had a, well, no battery. Yes, the battery was as flat as a pancake, so that's now on trickle charge. And also we have a flat tire as well. How exciting this is. This month is going to be spend spend spend ha ha

    NHI ufos and uaps

    I have been looking in the newspapers and I have been looking at a few stories and I see that UFO UAP disclosure is on the cards. Personally I think it is a big nothing burger as the Comet 3I Atlas also was, I know I never went into the fifth dimension or spiritually elevated or went into another place as it went past or gained any spiritual energy, or even saw anything strange in the skies. For me, sitting in my power chair, that's where I was sat. Nothing much happened, to be honest, and I think that's what's going to happen with UFO/UAP disclosure. I think we'll get a few films, a few reports, but nothing really too alarming to be fair. As I believe this is all a Project Blue Beam pSyop. Well, that's what everybody's saying everywhere, so that's what they say, and well, you never know what's going on these days, do you?

    research issues and failures

    I have tried to get in touch with certain researchers in the UAP UFO paranormal field to help me with my quest. But as of this day, it has, well, completely failed, I believe. I've written to several groups and researchers in the UK, and I've had no replies whatsoever. So I'm not expecting anything, so there we go. What do I do when the researchers won't even get back to you? You know, wow, that's unreal. But I have one ace up my sleeve, that is the old group from the southwest in the 80s and 90s, southwestern alien, abduction, strange phenomenon unit. and the founder Sam Potage. who I have spoken to at great length at what has happened to me. And he is very surprised and he tells me to carry on and someone will pick it up. He is of course retired and very elderly now. But he has put me on the right path of where I need to be. And I thank him greatly for that, as he hasn't done any research or anything apparently since the 2000s.

    Autonomic dysfunction woes.

    Well, the whole weekend was marred with my autonomic dysfunction. Yes, it was quite bad. If you have autonomic dysfunction and you have a histamine intolerance and multiple sclerosis progressive, you'll know what I'm on about or if you've just got a histamine intolerance. Yeah. I've been on the edge or weekend. The nerves in my stomach and all the way through all the way up are bad. It feels like I'm being completely strangled. It's unreal and my breathing is acting all kind of crazy. I am trying to work out what I must have eaten that has caused this trigger event. When my autonomic gets triggered, it goes from 0 to 100 miles an hour fucking quickly. And I have to start taking antihistamine tablets or LaRazaPan because they're the only two things that work at the moment because I'm still waiting to see a neurosurgeon or neurologist, whatever they call him, or an immunologist. As you recently found out on this blog, I have no neurologist. No, I haven't had one for over five years, my doctor has said, which has caused quite an outrage I must say. But there we go. Nobody ever fucking listens to me in what I say and look where we are at the moment. Yes, we're or as my father would say, God bless him, we're in the cactus.

    Still wishing anyone who reads this blog piece, healing love and light. No matter who, what or where you are.

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

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

  • Posted on

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

    Please remember I suffer with severe cognitive dysfunction this may be a confusing read. some AI written content

    Living with MS Through Inner Strength, Cannabis & Dark Humor

    Good afternoon fellow humanoids and N H I , Well, what can I say? Let’s get one thing out of the way early, before anyone suggests resistance bands or tells me to “just keep moving” like I’ve secretly been hoarding the ability to stand up for dramatic effect.

    I can’t.

    I’m in a power chair. That’s not a metaphor, not a bad day, not a phase I’ll stretch my way out of. That’s the situation. Full stop. So when people ask what physical therapy I do, there’s always this awkward pause where I decide how polite I feel like being. Sometimes I smile and deflect. Sometimes I think, ah yes, I’ll just hop out and jog it off, shall I?

    So no, my life isn’t built around physio routines or carefully curated gym sessions. My therapy looks nothing like the glossy leaflets. And yet, strangely enough, it works.

    Not in the “miracle cure” sense. Let’s not get ridiculous. MS doesn’t pack up and leave because you’ve found inner peace and a decent strain of cannabis. But surviving it? Living with it without losing your sense of self? That’s a different game entirely.

    And that’s where my version of therapy lives.


    The Myth of the “Right Way” to Cope

    There’s this unspoken expectation that chronic illness should come with a kind of noble discipline. You’re meant to fight it in acceptable ways. Structured ways. Ways that look good from the outside.

    You should be:

    • Doing your exercises
    • Tracking your progress
    • Staying relentlessly positive
    • Inspiring others, preferably while smiling through obvious pain

    And if you’re not doing those things, there’s a subtle implication that you’re… what, exactly? Not trying hard enough? Not coping correctly?

    Here’s the truth: there is no correct way to cope with something that rewrites your body without your permission.

    Some people find their footing in physical therapy. Good for them. Genuinely. If that works, hold onto it.

    But for those of us whose bodies have other ideas, the battlefield shifts. It becomes less about movement and more about endurance of a different kind. Mental. Emotional. Existential, if we’re being dramatic about it. Which I often am.


    My Therapy Isn’t Instagram-Friendly

    My therapy looks like this:

    Reading. Talking. Cannabis. Silence. Thought. A kind of quiet, stubborn refusal to disappear.

    Not exactly the stuff of fitness influencers.

    But let’s break it down, because each piece matters more than it probably sounds on the surface.


    Reading: Escaping Without Leaving

    When your physical world shrinks, your internal one either expands or collapses. There’s not much middle ground.

    Reading, for me, is a way of refusing to let the walls close in.

    It’s not just entertainment. It’s survival. It’s stepping into other lives, other minds, other possibilities when your own body has decided to limit the map. Books don’t care if you can walk. They don’t care if your hands shake or your energy’s shot. They just open the door and let you in.

    There’s also something quietly defiant about it. While MS chips away at certain abilities, reading sharpens others. It keeps the mind active, engaged, slightly dangerous.

    And if I’m being honest, it’s also a good distraction from the absurdity of it all. Because sometimes the reality of living with MS is so ridiculous that if you stare at it too long without a buffer, you’ll either laugh or lose your mind. Preferably both, in moderation.


    Talking: Not Just Noise

    Conversation is another lifeline, though not always in the way people expect.

    It’s not about constant chatter or forced socialising. It’s about connection that feels real. Honest conversations where you don’t have to pretend everything’s fine or package your experience into something digestible.

    There’s a particular kind of exhaustion that comes from being misunderstood repeatedly. Talking to people who actually get it, or at least try to, cuts through that.

    And sometimes, yes, it’s just about having a laugh. Dark humour, especially. If you can’t laugh at the situation, it starts laughing at you, and it’s got a much worse sense of humour.

    There’s something grounding about saying the blunt, uncomfortable truth out loud. It takes the edge off. Makes it manageable. Turns it from something looming and abstract into something you can at least look in the eye and say, “Right, you again.”


    Cannabis: Let’s Not Dance Around It

    I use cannabis. THC, CBD, the lot.

    There, said plainly, without dressing it up in euphemisms.

    For some people, that’s controversial. For me, it’s practical.

    It helps with pain. It helps with spasticity. It helps with the kind of background discomfort that never quite goes away but can be turned down from “constant screaming” to “annoying hum.”

    It also helps with something less tangible but just as important: perspective.

    There’s a softening that happens. Not a loss of clarity, despite what people assume, but a shift. The edges of everything become less sharp. The frustration, the anger, the sheer unfairness of it all doesn’t vanish, but it stops dominating the room.

    It creates space. And when you live with something like MS, space is valuable.

    No, it’s not a cure. It’s not magic. But it’s a tool. And I’ll take every useful tool I can get.


    Natural Rhythms and a Bit of Witchcraft

    I describe myself, half-jokingly but also not, as a natural Wiccan.

    Not in a performative sense. I’m not out in the woods casting elaborate spells under a full moon, though that would at least make for a better story.

    It’s more about a mindset. A way of relating to the world that isn’t purely clinical or mechanical.

    Living with MS can make your body feel like a broken machine. Something that’s malfunctioning, unreliable, frustrating. The medical model reinforces that. Everything becomes symptoms, treatments, management strategies.

    Necessary, yes. But incomplete.

    What I lean into is something more intuitive. Energy. Calm. Intention. The idea that even if my body isn’t cooperating, I can still shape my internal environment.

    Call it mindfulness if you want to sanitise it. I prefer something with a bit more character.

    It’s about creating moments of stillness that aren’t empty but full. Where you’re not fighting your body or resenting it, just existing alongside it.

    Some days that looks like quiet reflection. Other days it’s just sitting there, breathing, thinking, “Well, this is what we’ve got. Let’s work with it.”

    There’s a strange kind of strength in that. Not loud or visible, but steady.


    Stillness Isn’t Weakness

    This is probably the biggest misconception.

    If you’re not moving, not actively doing, not visibly pushing forward, people assume you’ve stopped. Given up. Settled.

    But stillness can be an act of defiance.

    When your body limits your movement, choosing not to let that define your entire existence is a form of resistance. You’re still here. Still thinking, feeling, observing, adapting.

    Strength doesn’t always look like action. Sometimes it looks like endurance. Sometimes it looks like sitting in a chair and refusing to disappear, even when everything’s telling you it would be easier to fade into the background.

    There’s nothing passive about that.


    Dark Humour: The Unsung Therapy

    Let’s talk about humour, specifically the darker variety.

    Because if you’re dealing with something like MS and you don’t develop a slightly warped sense of humour, I don’t know how you cope.

    There’s an absurdity to the whole situation that practically demands it.

    Your body does something ridiculous. You respond with, “Brilliant, love that for me.” Not because it’s actually brilliant, but because the alternative is constant outrage, and that’s exhausting.

    Dark humour creates distance. It lets you acknowledge how bad something is without being completely consumed by it.

    It also tends to weed out people who can’t handle reality. If someone’s uncomfortable with you joking about your own condition, that’s usually a sign they’re more invested in their idea of your experience than the actual thing.

    And frankly, life’s too short, even when it feels very long, to cater to that.


    Blunt Truth: This Isn’t Inspirational

    I’m not here to be inspiring.

    That’s another expectation that gets quietly placed on people with chronic illness. That we should somehow turn our experience into something uplifting for others.

    Sometimes it is. Sometimes there are moments of clarity, resilience, even a kind of rough beauty in how you adapt.

    Other times, it’s just difficult. Frustrating. Boring, even. A long stretch of managing, adjusting, getting through the day.

    And that’s fine.

    You don’t need to turn your life into a lesson for anyone else. You just need to live it in a way that makes it bearable, maybe even meaningful on your own terms.


    What Actually Keeps Me Going

    At the center of all of this isn’t any one practice or habit.

    It’s something harder to define. Inner strength, if you want a simple label, though that doesn’t quite capture it.

    It’s more like a refusal.

    A refusal to let MS strip away everything that makes me me. A refusal to be reduced to a diagnosis, a chair, a list of limitations.

    The beliefs I hold, the way I see the world, the quiet rituals of thought and presence and, yes, the occasional chemically-assisted perspective shift, all feed into that.

    It’s not neat. It’s not structured. It wouldn’t fit into a treatment plan.

    But it works.


    Final Thought, No Sugarcoating

    If you’re looking for a tidy conclusion, something uplifting and neatly packaged, this isn’t that.

    Living with MS isn’t tidy.

    But it is livable.

    Not by following someone else’s blueprint, but by building your own, piece by piece, out of whatever works. Even if it looks unconventional. Especially if it does.

    So no, I don’t do physical therapy.

    I do something else entirely.

    And it keeps me here.

    Which, all things considered, is a solid result.

    so I'm sending you all out there peace-healing love and light, no matter whom or whatever you are, or wherever you are in this world.

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

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

  • Posted on

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

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

    I used a power chair and a chainsaw to take down a tree. I did NOT consult my body first.

    Good afternoon fellow humanoids and N H I , Well, what can I say? This weekend I've completely overdone it. I've used every last spoon up. I've completely exhausted myself in the garden, trying to do some work. Now, you may laugh, but a tree surgeon costs quite a lot of money. And I got it in my head that in my power chair, I can sit in it with a chainsaw and chop down the offending tree thing. Well, the power saw, chainsaw arrived yesterday, and of course, I'm sat in the garden. And guess what? Even in my power chair, and also chair that I used to sit in the shower in I used, I managed to chop down half a tree. And loads of other things with a bloody great big chainsaw. Oh my God, I must say, I was as nervous as hell. And my God, I'm surprised, Albertine, let me loose with a 12-inch plus inches of chainsaw. Oh my God, I know a lot of people would say, "What the fucking hell are you doing?"

    Some would say not in my right mind

    Well, I think it comes as no surprise really that I do some very strange things. And this is probably a sign of stranger things to come, I would have thought. But yes, you can have a power chair and you can have progressive multiple sclerosis. No feeling in your arms and legs and completely tatered and operate a quite lethal power saw, chainsaw, it's unbelievable. And I did it what I perceived to be quite safely with my very focal glasses and my, well, trusty leather motorcycle gloves. So, yes, if you'd have asked me 20 or 30 years ago to use a chainsaw, I would have given you a categorical, no bloody way. But as they say, needs must when the devil drives. Unfortunately, I'm not a rich man. I'm only on a state pension, unfortunately. I can't afford a tree surgeon and I don't know anybody who will chop it down for free. So there we go. So the cost of a hundred quid for a cheap electric chain saw from Amazon. Hey presto, job done. I'm feeling really good about myself at this moment in time because I've achieved a milestone and something I never thought I would do.

    At the expense of my health.

    Well, as the adrenaline wears off, yes, you've guessed it, I'm coming crashing down. Yes, yes, yes, I have completely overdone it. Tinnitus is getting louder, the brain fog is, well, starting to cloud in and I can't feel my arms and legs anymore, and I can feel my throat and it feels like I'm being strangled. So the old auto-immune is giving me some crap as well now. So pins and needles in my hands ferociously now and of course all offs as well in the neck. And I've also got the belt as well, which is really tight and is always making me feel sick for some unknown reason. But still, there we go, fellow humanoids. Let's just say it's a win for me today.

    Thought for the day.

    "Remember, goblin." "Don't overdo it." "It doesn't end well, but you cannot be told, can you?" "No, you can't, and you won't even listen to yourself."

    so I'm sending you all out there peace-healing love and light, no matter whom or whatever you are, or wherever you are in this world.

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

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

  • Posted on

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

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

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

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

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

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

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

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

    I’ve had enough.

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

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

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

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

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

  • Posted on

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

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

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

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

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

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

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

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

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

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

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

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

  • Posted on

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

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

    Good morning fellow humanoids, the sun is shining brightly through the window yet the clouds are looking dark and it looks like it might start raining soon. So today I'm feeling particularly bad, the autonomic dysfunction is going up a few notches it seems every day. So hopefully I hope that I don't get one of those really terrible attacks like I have been getting every now and again. That puts me into hospital.

    So, as you know, yesterday I got in contact with my doctor about getting an appointment with an immunologist. But alas, I've got to jump through hoops and hoops. And I have to wait to speak to a doctor for a month before I can even ask to see an immunologist. Now this is unbelievable. As I've been waiting to see a neurologist for over five years, and you would have thought after the last massive attack I had in November, things would have been put into motion. But alas, no, it seems as usual it's all fucked up. The thing is the MS nurse told me that the neurologist said I have to go and see a immunologist Yes, so there we go and Now I find myself in this position of why could you not have told me that in November? So now I have to wait a month to see the doctor. I then have to...

    Oh yes. Something else that's just really annoyed me as well. As today I'm feeling particularly unwell and shitty. I sent a letter or email to the MS nurse. Asking for help, but guess what? I have had an email back saying I am on holiday again till Monday, or on leave I suppose. and to get in touch with 1-1-1 if it's urgent. Well, again, I make this point. Why would I want to phone up them when I have a perfectly good MS service that is there to help me? By the time I've explained to 1111 what's wrong with me and what is going on, And then the 1111 service take absolutely hours to get back to you, don't they? Yes, so there we go. So you'll know further forward because they've got to find somebody who is a specialist in MS as well, haven't they? Or autonomic dysfunction. that could take six or seven hours I've been waiting by the telephone, as Debbie Harry would say, and no fucking way.

    I am fed up of putting myself through all of this stress. So, do you know what I'm going to do? I'm just going to do absolutely nothing. What is the point of the MS service? Because to be fair, they're not very good, are they? What's the point of the neurology? Not very good, are they? No. So, as I sit here, slowly fading away into nothingness, I question why I even bother going to the doctors at all now, because they have been no help to me whatsoever. I just sit here and I just suffer and get no help, or the only help they can offer is, 'Oh come and see me in a month's time. I don't want to have to pay £55 because I cannot afford it to see a private doctor.' So, yes, I'm just going to have to fucking suffer. Due to the nature of my autonomic dysfunction and all this pollen, I think I'm at the limit of my antihistamine tablets. And guess what? My autonomic dysfunction, histamine levels are going up and up and up. And we know what this means, but no one gives a bloody damn do they?

    So as far as I'm concerned, I'm going to have to go and shut myself in the bedroom, turn the light off and basically just lay there because that's all I'm going to be able to do because to be fair with anybody I'm not going to be able to function soon. That's the pure harsh reality of it all. When the sickness and diarrhea starts, that's probably when I'm going to phone for the ambulance. Because then they will be able to see what I actually go through and my attack and then I'm probably going to be an hospital when it goes off. I am half tempted to just not take any anti histamines and let everything go off end up in hospital and do things that way. I am so sorely tempted that I'm not going to do that. My God, things have got that fucking bad in my life now.
    Still, that's it for now. Wishing everybody healing and peace

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

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

  • Posted on

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

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

    Well, at the time of writing this, it's Wednesday evening ( its Tuesday lol ), and it's quite a pleasant evening. So a very pleasant evening, morning, afternoon, wherever, or whoever you are in the world. Hello fellow humanoids. Well, it's been quite a week for me, I can tell you that. Yes, it's already started. My new medical dramas are about to start coming to fruition. So, as you know, I've been waiting for a neurologist's appointment, an urgent neurologist's appointment since November. That still has not happened. So, I phoned up my MS nurse. Well, I tell a slight lie, I dropped her an email and she made an appointment to phone me. And she informed me that I need to see an immunologist. And I said, "Well, why couldn't you tell me that?" months ago.

    So, I'm not angry, I'm not pissed off, I'm not really that fed up. I'm just a bit miffed, to be honest with you, because I've had to use AI to manage my multiple sclerosis and my autonomic dysfunction episodes rather than my neurologist who I can never speak to, and my MS nurse when she's not on leave, sometimes. So yes, I'm in a worse situation than I was before, and on changing hospitals, that is now all on hold. It seems I am staying with my old neurologist who does not like me, who does not get along with me, and it looks like I'm going to get railroaded again. But I do not think I am going to put up with this, so I'm going to be fighting this tooth and nail, because to be honest with you, I'm getting rather fed up of all the bollocks that I'm having to put up with and to go through, just to go and see an immunologist to get my autonomic dysfunction sorted out, which it has taken them how many years to try and sort out. They've had a good, what, 10, 15 years of sticking tubes up and down my nose, going and seeing specialists and God knows what. I find out through AI what's giving me the trouble. Yes people, AI told me what the problem was, not a doctor, not a specialist, but they also agree now with what the AI is saying because of my symptoms. If only they would fucking listen to me. Why does nobody ever fucking listen? It makes me bloody angry. I am sorry for my swearing, but I feel really strongly about this.

    So, you've got multiple sclerosis and then you have all the other bits and pieces with the MS which they really don't tell you about. You're supposed to go to a group or you're supposed to go on Google and Google it. They don't sit down with you and really explain to you the living hell that you're going to be going through for the next lot of years. It don't explain to you that the condition causes other conditions to get worse and can cause conditions you would have been dormant in your body to rise up and bite you on the arse. It's like I was okay with the MS but to have severe or autonomic dysfunction as well is mind blowing. You know, they never listened to me but I shouted loud enough and they listened. But now I'm having to shout even louder to try and see an immunologist to try and get some help. Every day is a living hell for me. Every night is a living hell for me. These people do not know what I am going through.

    That is why I write this blog because I want to show that I'm not the only person that is going through this living hell. There's thousands of us with chronic illnesses out there who are suffering, who are unheard, whose voices are not heard. We are pushed to the back of the queue. We are not listened to. It really is a very sad situation in this society when people do not care for the sick, disabled and elderly in their society. I think that is a damning thing about the state of our society and the world we live in. The more I look at it, the more I see money and greed and power. That's all people are interested in. The empathy seems to have gone. It's just greedy pigs at all the troughs as usual. Well, I'm going to have to say allegedly because it probably, well, I don't know, to you. Some rambling words and thoughts going on my mind which I'm not prepared to say. lol

    So yes, I got in contact with the medical center today, Albertine sent an email for me to get them to get me an appointment with the immunologist to see if that would help things move along, according to the MS nurse, it will. So I received a phone call saying, "Oh, you've got to come into the surgery this morning for triage." And I said, "Well, it's autonomic dysfunction. Why have I got to come in? I just need to see an immunologist." And I really can't work out why I've got to go and see a doctor. When I know what's wrong with me, they know what's wrong with me. Yet I've got to go through this weird system. It's already been over four months. You would have thought I would have been seen by an immunologist or even a neuro by now. But I haven't. So it just goes to show that I'm 66, so I'm retired. That means I'm old. That's box one. I'm sick. That's box two. Oh, dear. Yeah. Don't listen to me. I'm old, sick and disabled. I'll go to the back of the queue and just sort of curl up and roll a little ball and just stay there and rot.

    But unfortunately, I'm not going to crawl into a little ball and rot. I am going balls to the wall. No, I'm just taking it slow and I'm taking it steady and I'm taking my time. And if I get seen, I get seen. And when I do get seen, I'll be able to sit there while they treat me like an idiot, as they always do. You know, when you're in a wheelchair and you've got somebody with you, they always talk to the person and not the person in the wheelchair, don't they? So yeah, I have a list of questions. I have quite a lot of evidence and yes, I will be going armed with all the evidence and yes, they cannot easily get away with all of this rubbish because in the end, they've got to see me. I mean, why can't they just take five minutes out of their day? You know, simple really, isn't it? I think in this day and age of everything being 24/7, doctors and dentists should be 24/7 as well, 365 days a year, because that's the society we have turned into. Still, I shall go and look out of the window and I will be listening to some music. And, well, just think myself lucky that My tinnitus is on low volume today.

    So, an update from the doctor situation. "Would you believe I had a phone call from a doctor's surgery this morning? And they said to me, 'Can you come in today?' to come in for a nurse for triage?' I said, 'No, I am too ill. I cannot get there.' 'Oh,' she replied. The next thing, 'Oh, I shall get you an appointment,' I thought. 'Oh great, I might get to see somebody.' 'Uh, like a phone call or something.' 'No, I now have to wait a month to see a doctor.' The only reason I got in touch with the doctors was for them to arrange an appointment for me to see an immunologist. And I now have been waiting for months. And now it looks like I am going to be having to wait more time due to people not listening and acting correctly. So yes, I'm only one more autonomic dysfunction attack away probably from something very nasty and fatal happening to me. You just cannot make this stuff up. So now I'm going to have to email the MS nurse to try and get her to get her ass into gear and also to speak to the neurologist to try and get him to do something as well because to be honest with you I don't think I can put up much longer with what is going on with me.

    So yeah, as you've guessed, it's Wednesday morning that I'm doing this and I did the earlier part of this blog on Tuesday evening, I think it was. I can't remember. I haven't been that well. So please remember, have fun out there and be safe.

    Still, anyway, that's enough of my ranting and moaning today. Still, I'd wish you all a very good week ahead and send you peace and healing, and hope that things go well for you all. Whomever or whatever you are, wherever, or whomever you are.

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

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

  • Posted on

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

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

    Well, it's that time of the year again when our gardens need to be sorted out, and the demon weed wacker is going to be performing his tricks. Oh yes indeed, my carer is going to be using the chainsaw over the next coming few weeks to chop down all the over-ruelly bushes and bits of tree and detritus in the garden. As you can remember, the Demon Weed Wacker is slightly accident prone. Yes, he has broken many of my tools. Yes, he broke the lawn mower. He broke the various items of electrical drills and power saws. So, should I let him loose with the electric chainsaw? This is what I ask myself. Well, the question is, of course I am. He's a very sensible person and a wonderful man. And he's been absolutely amazing over this past year. And to be honest, I couldn't have not done a lot of what I've done without him around the house and around the garden. Being my carer, I would have to say, if you need one, you live in the southwest. This dude It is the best.

    The thing is, Albertine will not let me use the big electric chainsaw. I said I will sit in my power chair and I will sit in that and use the chainsaw and she has categorically said No chance. So, I am just going to have to look out of the window and see what happens. And be near a phone just in case he chops his leg or arm off. Yes, and the other thing Albertine has ordered a shredder. Yes, this should be fun. To see him using the shredder and I'm betting that the shredder will be knackered within the first couple of hours. But Albertine being Albertine has said, "I'm sure it will be okay." So, we would be waiting to see how he can screw it up. Oh indeed, will he blow it up? Will it refuse to chew it up? I don't know, do you?

    So, the next few weeks are going to be anything but dull. Yes, what with Easter coming up? So I have to get the grandchildren Easter eggs. Well, I don't get any Easter presents because I can't eat chocolate, so there we go. And I don't get offered out for any meals at Easter Christmas or any time of the year because my diet is that of, well, hardly anything. As you well know, chronic illness is not good. Multiple sclerosis has turned me well. More than vegan, I suppose. I'm not vegan by choice, that's for sure. But when you consider I mainly just eat rice and a couple of other things and a couple of eggs, that's it. I suppose I'm not vegan then, am I? Because I eat eggs, so vegetarian then. I don't want to upset anybody.

    I suppose I've been a vegetarian now for over 10 years, 15 years. And before that, on and off for another 5 years. But now the smell of meat really does repulse me and make me feel totally sick. Yes, I cannot handle any smells from the kitchen, any food that has any fat in it or anything like that. So yeah, my diet is really, really bad due to the autonomic dysfunction and the histamine thing. So yeah, it's been a total nightmare. It's been a living hell, but there we go. Every day is a new day as they say, and I have to be so careful.

    I know some people might find this really funny, but I was standing at a local services, not very far from my home. And I was standing near one of those units that pump out the filtration. And you could smell the fat in the air. And the, just the smell of the fat gave me diarrhea. That's how bad it was. So yes, certain smells can give me diarrhea. It is really not very nice. So even smells of washing powders or things like that can give me headaches. It's quite a nightmare, it's the thing now that I can't go into a supermarket anymore. Even if I wanted to go I can't, the smells do for me. I really mean, you know, they push through the smells of pasties and pies from their restaurants. I mean, they smell amazingly nice, but the smells, once they hit my nose, that means the fat. Well, in the nose and out the bummers they say, not very pleasant, so I have to be very careful to the shops I even go into. It's a bloody nightmare, you've got no idea. Some people have no idea what it's like.
    And I know it's not just me, there are thousands upon thousands of people all over the world who can't go into supermarkets because of the smells. It's just something that our senses can't handle if you're slightly super sensitive I suppose.

    I suppose it started many years ago when I first started going into the big supermarket chains and it was the flooring. The flooring I just couldn't look at the flooring my head used to start spinning and going weird and then there were all the smells. It's so many things going on at once my head just could not cope. It's the most unreal thing because I love going into supermarkets, I love going into shops, but alas, I just really can't anymore because I can't take any chances because why the hell would I want to go out and shit my pants in public. It's not a good thing really is it?

    But the thing is, you see, there are so many different hidden illnesses that cause so many different things to happen in the body. Smells can cause havoc. It is quite unreal. And then there are all the issues with certain different foods people cannot eat as well. It's sad really, but it seems that our bodies are not enjoying what we're eating. At the end of the day, if you have a healthier gut, that means it will help your body heal more I believe? So, I think gut health is one of the most important things with chronic illness. Well, that's my opinion anyway.

    Still wishing everybody a happy holidays in the next week ahead, and that things don't get too bothersome. Personally, I hate holidays. I really just see them as a bigger day of inconvenience, to be honest. But then again, that's just my own personal opinion. In fact, I can't remember the last time I went on holiday. Yes, that long ago. I gave up trying to go abroad. It was in the days when I had to take all those big farmer drugs and they wouldn't let you go to certain countries with them or fly with them. So go figure I didn't go to many places. I believe Amsterdam and the Netherlands were one of my most favorite places to go. I would go there for a month at a time. I would save up hard from work and scrimp every last penny and have the holiday of a lifetime there. It was absolutely awesome, myself and Albertine and total freedom to be who we wanted to be. I can remember going into the Bulldog and the Damkring and also Mellow Yellow. They were some pretty amazing coffee shops. I think I can remember the grey area as well, but for me it had to be kadinschis in Amsterdam which provided the best marijuana, that's for sure. I think I might have got the spelling a bit wrong there.

    Still wishing everybody peace, healing, love and light no matter whom ever you are or whatever you are. Happy holidays!

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

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

  • Posted on

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

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

    Hello fellow Humanoids So, this week I have been thinking about what I could do an article about, and I was thinking, and I thought to myself, well, how about an article about being disabled and living in the modern age and how we're treated by society in general and also those in charge and those who should know better.

    But I am sure this is a very contentious issue, and can cause a lot of diverse reactions within people's little brains. But unfortunately, I go with the "I don't give a damn" approach. I mirror the person who is talking to me. So if they give me an attitude, I will give them an attitude back. If they are nice, I will be nice. So it's the case of "You play the game my way" or "No way" I will not play the fool for anyone.

    When you're in a wheelchair and you're sat in a wheelchair, that means you are disabled, it also means you are unwell. It also means that you are likely to be not in the best of places either in pain, suffering silently. And then you will have some well meaning numpty come up to you and start talking down to you, treating you as though you're a second-class citizen. Now that really does annoy me and there are many of these people around. They talk to Albertine rather than me, even when I am next to her and its about me??? I just dont get this fucking silly atitude, and that's unfortunately happens far to often... But I make dam well sure it does not happen again.. Its like I don't exist pat me on the head give me a sucky sweet yada sodding yada.....what an absolute joke I am sure many of you have at some point been in this position !

    It's like I've always said, I didn't ask to be disabled, I didn't ask to be in a wheelchair, I didn't ask for this life. But I'm having to deal with it, and I'm dealing with it in the best way possible. And I don't need idiots and well-meaning numptys to stick their noses into my business thinking that they know better than I do. I live with this illness 24/7, most people fortunately don't have to. So yes, when you've got a chronic illness and you're living it 24/7, and people start telling you how to live your life, and these people have no idea what we go through. They should just shut the fuck up and maybe start listening to the person Instead of nodding and smiling and treating them as though they were a little child What people must understand, respect goes both ways.

    Most of the disabled people I have dealings with and disabled friends that I have dealings with have told me of the severe injustices handed to them by bureaucrats and also the uncaring people out there. I hasten to add, there are many people who are very empathic and are really amazing people towards people who suffer with disabilities. Some of these people cannot be faulted as they are most excellent people indeed.

    People who just do not know what it is like to be disabled. They do not understand and they don't want to understand. That's because we live in a society that is only caring about one thing, money and greed. Caring about people is no longer a thing in our society, our communities are broken, it's a zone nobody gives a damn anymore about anybody or anything. and if your disabled your screwed treated like shit a second class citizen and ignored put to the back of the queue... people are nice to your face and behind your back slag you off thinking its funny... well fuck them all...

    And here is just the last thing that most of my friends who have MS and various chronic illnessess , a lot of them are still working. And guess what, the one thing that really annoys me more than anything else is saying disabled people are lazy. This is just not true. I have just retired and just given up work.... So, when people say all disabled people should be working, I think they really do need to assess what is wrong with the person. As with me, for instance, I only carried on my work because I was self-employed. I suffer with severe brain fog, and when you get a severe brain fog on, you can't do anything. Your life is at a complete loss. Chronic fatigue as well.

    People just don't seem to realise what chronic illness is. The pain. Also, I mean, do people not realise if you was to hit your thumb with a hammer, for instance, the pain would stop you doing pretty much almost anything for quite a while . Just think if you had to endure chronic pain every day like that in joints or nerves in the body, what that must truly feel like. To actually survive the day is a miracle in itself for some people those days are an undescribable hell on earth. And I'm coming from lived raw experience here. The pain I suffer, the brainfogs I suffer, the spasms. It's constant 24/7. And yes, I feel fucking terrible all of the day, all of the night. It never stops. It never gives me a break. It makes my life a complete living fucking hell. That's what progressive multiple sclerosis is like. And people just seem to think, "Oh, he'll get better. Go see a doctor." Now that really does piss me off, oh he looks ok, I just give up with some people who have no understanding or any empathy with their fellow humanoids..

    Because the only thing a doctor or a neurosurgeon can do is throw pills and potions at you, which for some people will work. But if you're me, I suffer with every side effect if it's written on the box. So unfortunately I cannot take big, pharma medications, which in some cases is very unfortunate for me.. Yes, I have tried most of the pain medications. I've been on the Capazone injections. I've tried all sorts of different things over the years. And to be honest, if there's a side effect, I get it. And that's the major problem. Because with MS, like a lot of other illnesses, it can cause conflicts in your body. And unfortunately, for me, I cannot handle the side effects. So, apart from a couple of things, I am big pharma-free. And as you know, I use medical marijuana flower, and also CBD and THC oil, which is legal in the United Kingdom now, if you go to one of the clinics, you can find them if you just type it in Google.

    As I have said in many previous blog posts, medical marijuana and the THC CBD oil has helped me immensely with little or no side effects, but I must say it really does help me in my personal case. I suppose everybody is different so people should remember to consult their medical consultants or doctors, nurses or whomever they consult really. I just took a deep dive and went for it, but that's me. I do recommend people check with a health professional before they do anything though first.

    What people don't realise is illness, chronic illness affects people in so many different ways. People can have hidden illnesses that other people cannot possibly detect. Also, there is the mental health aspect to all of this as well, because the other issue is we have more mental health problems. And when we try to get mental health help, well, it doesn't end well for us, does it? We get put to the back of this very, very long queue, just left to rot. Or is that just my imagination?

    I have come to the conclusion that it is bureaucracy that makes everything bad, red tape and bureaucracy however they spell that, But then again, that's just my own personal opinion. Still, I must finish here before I bore everybody, and that wouldn't be a good thing.

    Still, sending everybody who reads this blog peace, healing, love and light, no matter who or what 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
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  • Posted on

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

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

    sorry I screwed up and deleted this blog post lol a re post from yesterday

    hello fellow Humanoids So it is Friday lunchtime, and I got back from seeing the machine of death at the chemists, and I went on my three-wheeled scooter of death, the approximate one mile to the chemists shop to get my prescription from the machine of death. In the end i gave Albertine the number because i didn't want to go near it because it starts worrying and buzzing and start saying things like go away we don't like you because you're weird. In other words, the machine is one of these machines that has a life of its own, as Albertine found out this morning.

    I must say the staff at the chemists are very good But this is the third time in a year that we have had the wrong prescription medication given to us from the machine of death. Yes, there you are, you'll get home, you'll open the package, it's got your name on it and inside are all these other packages with other people's names on. And this just won't do. And the chemist now drives to the house to pick up the said items. You know, we will look into this, but how many more times has this mistake got to be made before somebody tragically, unfortunately, somewhere has a horrible accident?

    Because that's we all know when you're my age and you wear glasses and things are a bit fuzzy sometimes you can't always read properly. And sometimes you can make mistakes and sometimes you can take the wrong medications and fuck up really badly. Still, at least all that got resolved very quickly, I must say indeed. And they were very apologetic.

    I woke up this morning at 6 and my body felt like hell and I knew that I had to force myself to do something otherwise I would just lie there for the whole day feeling sorry for myself As you know when you wake up that's the worst time because then the body starts to totally kick in. So everything happens at once. Spasms, brain fog, the whole lot. bowels, everything. It's like a volcano and an earthquake all going off at once. God knows what my poor neighbors must think with some of the sounds and noises that I make early in the morning and during the night as I seem to be at the moment talking a lot in my sleep which is slightly funny.

    I knew that I did not want to do a thing today. I just felt like complete shit. So, I went and I had a shower and had my breakfast and decided I am going out no matter what. The only thing that Would really stop me would be rain, snow, or a massive lightning storm. As it was, the three-wheeled beasts turned out to be very slow. We had a headwind, Albertine and myself, on our trolleys of death, and yes, you guessed it, there was quite a lot of traffic behind our two trolleys. But there we go. I find the motorists around this area are absolutely amazing people.

    And yes, you guessed it, it did rain. On and off, but we didn't really mind. It was really good to get out. It really did help. I felt so much better for going out. But of course, when I got in, I had to suffer the spasms from hell. But there we go. Sometimes you've got to suffer just a little bit just to make yourself smile. I know that might sound strange, but that's the whole truth of the matter.

    The kittens, or should I say now cats, are driving me absolutely fucking crazy. They seem to be the devils spawn. Really, we have two cats that are absolutely off their rockers and then some. Missy Dora, as we call her, she is part, well, she is a Siamese cat. We have since found out underneath the bundle of fur that she is. She's actually a... Tortoise shell, Siamese, and by God all she does all day is moan and scream. Oh, oh really, sometimes I wish, but there we go. The other cat, kitten, is absolutely bonkers, and she gets up to things that you really Don't want to know if you're eating your food.

    Upon coming back on our three wheeled trolly of death, I looked at the side of our place, and part of the roof has blown away, and I was wondering how long it would be before one of my children or one of our relatives would say, 'Oh, I see you have some things off. Let me fix that for you.' But alas, no one has offered to help me whatsoever. Yet, I remember all the times I selflessly helped people, even went out of my way to help people, and now I can't get people to help me do absolutely anything. Even if I give them beer money, it's absolutely unreal. I get the children or young adults or whomever can be busy, but surely they can spare 10 minutes just to help with two bits of tile that I can no longer climb a ladder, I can no longer use a screwdriver, you know.

    So I had a quote from somebody and they wanted a 150 quid for just putting two bits of plastic back on the roof. And I was absolutely outraged to the point where I have told Albertine she is going to have to get me a ladder and that I am going to have to practically kill myself getting up the ladder to do the job myself because that's the way it goes. You can even ask people to do the job but alas then they don't do the job properly. And that's what gets me why people can't do a proper job the first time and have to lash the job. It really does make me think and before my father died last year he said to me bearing in mind my father lived in New Zealand. He said that none of his family came to see him. None of his family helped him and he felt on his own and he felt alone and he was really really sad when they threw all his belongings away when he was in a home without asking him. He felt so fucking sad and I just know how he feels now.

    So in plain reality you either have a family who love and care for you or you have a family who love and care for you that are so busy that they can never see you. And in my case it's a family who are so busy they can never see me. So yeah, having multiple sclerosis is one of the worst fucking things that's ever happened to me. It has changed my life in good ways and it has changed it in bad ways. So yes, I know that if I was in good health and I didn't have this, I know all those jobs that I need doing now, I could have done in a few hours. But if I have to struggle, they just won't get ever done. But people do not understand that. They do not understand what multiple sclerosis and chronic illness is about. They don't realize the tiredness, the brain fog, the fatigue, and what you just have to go through all day long. And then there's all the stress and then there's all the worry. People just really do not get it. Some people should try living in a disabled person's shoes for a week and see how they get on with life because I can assure you they wouldn't last very long.

    Anyhow, that was a bit of a rant and I went off on one there. But that's honestly how I feel and if I was to tell people how I honestly feel about everything, I would be the most hated person walking the earth, I think. Because what people don't get is that along with all chronic illness there is the mental health issue and we all have and go through severe mental health issues with chronic illness that's a pure fact it's like the pain. So yeah I do understand how harsh and how hard it is for us all out there and I just want people to realize that being disabled is not fun we didn't ask to be born disabled we didn't want to be disabled but we are and we have to make the best of a bad job. So to do anything much we basically have to just suffer and suffer and a lot of us suffer in total silence without ever saying anything to anybody and that is the saddest part of it all that if you speak out your classed as a troublemaker. Empathy has gone out of the window

    And then alien disclosure turns out it was a dead cat on the table. I really thought to myself like they're going to tell us there are aliens and hybrid aliens walking amongst us. I don't think they would ever do that, would they?

    Still, sending healing, peace, love and light whomever and whatever you are out there. Have a fantastic weekend when it arrives for you, and as ever, take care and be careful and look after yourselves.

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

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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