Multiple sclerosis is My Living Hell

Multiple Sclerosis

All posts tagged Multiple Sclerosis 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. Some AI written content

    What Causes Multiple Sclerosis? A Simple Explanation

    And a very good afternoon to all my fellow humanoids and NHI readers, I trust all is well in your world or even realm... uap/nhi drop coming soon as well!!

    Multiple sclerosis (MS) is a condition where the body’s immune system mistakenly attacks the brain and spinal cord. Over time, this can disrupt how nerves send signals, leading to problems with movement, vision, balance, and energy levels.

    Scientists now believe MS doesn’t have a single cause. Instead, it develops when several factors come together: genes, infections, and environment.

    1. Your Genes: The Starting Point

    Some people are born with a higher chance of developing MS. This doesn’t mean they will definitely get it, just that their immune system is more sensitive.

    Researchers have found many small genetic differences linked to MS. The most important ones affect how the immune system decides what is “safe” and what is “dangerous.”

    Think of it like this: some people are born with an immune system that’s a little more easily confused.

    2. A Common Virus: Epstein-Barr Virus (EBV)

    Almost everyone is infected with Epstein-Barr virus at some point in their lives. It often causes mild illness or sometimes glandular fever.

    What’s interesting is that nearly all people with MS have had EBV in the past.

    Scientists think EBV may “confuse” the immune system in some people. After infection, the immune system may accidentally start attacking the body’s own nervous system instead of just fighting the virus.

    This is currently one of the strongest clues in MS research.

    3. Lifestyle and Environment

    Certain everyday factors may increase or reduce risk, especially when combined with genetics.

    Sunlight and Vitamin D

    People who get less sunlight—especially during childhood—seem to have a higher risk of MS. This may be linked to vitamin D, which helps keep the immune system balanced.

    Smoking

    Smoking increases the risk of developing MS. It may cause inflammation and make the immune system more reactive.

    Weight in Teenage Years

    Higher body weight during adolescence is linked with a higher risk of MS later in life. Scientists think this may be due to long-term effects on inflammation and hormones.

    Where You Grow Up

    MS is more common in countries farther from the equator. Interestingly, if someone moves to a different country when they are young, their risk often changes to match their new environment.

    This suggests that childhood exposure is especially important.

    4. It’s the Combination That Matters

    MS usually doesn’t come from just one thing.

    It seems to happen when:

    A person has a genetic tendency They are exposed to EBV Environmental factors like low sunlight or smoking add extra pressure

    When these factors overlap, the immune system can become misdirected.

    5. What Happens in the Body

    Once MS begins, the immune system starts attacking the protective coating around nerves in the brain and spinal cord.

    This damage can:

    Slow down nerve signals Cause symptoms that come and go And over time, lead to lasting nerve injury

    Even when symptoms improve, some quiet damage may still continue in the background.

    Summary

    MS is not caused by a single trigger. Instead, it develops through a mix of:

    Genetics (how your immune system is built) A common virus (EBV) Environmental factors like sunlight, smoking, and early-life conditions

    Scientists are still working to fully understand it, but one thing is clear: MS is a complex condition shaped by many small influences coming together over time.

    wishing everybody peace healing love lite no matter whom what or where you are... I'm drifting through the digital fog like a ghost ship in a magnet storm

    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

    And a very good afternoon to all my fellow humanoids and NHI readers. Oh indeed yes. and welcome to my blog on this overcast afternoon. Well, to be honest, it's been quite a strange few days. So, I bet you're all wanting to hear what happened with the doctor's phone call. Yes, well I shall explain it to you now and I think you might be slightly surprised.

    You haven't been registered with neurology for over five years

    So, apparently, when I spoke to the doctor, the doctor was very concerned indeed. When I told him I hadn't seen a neurologist for over five years, he then informed me that I didn't have a neurologist. I said to him, "What do you mean?" He said, "Well, it seems as though you just don't have a neurologist." I said, "Well, I have an MS nurse." He said, "Yes, you have an MS nurse, but you do not have a neurologist." And this has been the problem. So, I haven't had a neurologist for over five years, and the thing is, nobody has told me. So now, the cue for the Neurology Department at my local hospital is over a year.

    Worsening symptoms

    My neurological emergency was before Christmas and it is getting severely worse. Yes, the doctor is listening to me, but the MS nurse apparently has been gaslighting me for what seems to be five years according to the doctor. And I would suppose that's why in five years I've never had an appointment with a neurologist even though I've asked for one. So it seems somewhere along the line they've taken me off their books. How about that and never even bothered to inform me?

    The DR sorts it out !

    So now I'm having to get my doctor to sort all this mess out. So it seems that someone has been gaslighting me and it seems I've been taken off the neurology team's records at the hospital. Which is rather alarming because over the past five years I have had several major attacks that have caused the ambulance to be called and severe heart issues etc etc. I don't want to go into all that at this time but you can see where I'm coming from. I know what the problem is with me but they will not acknowledge it. They won't even speak to me. And the worst thing is I know why this has happened and I know why it is happening.

    I pissed my neurologist off being a lifestyle biker.

    Obviously, I must have pissed off my neurologist, what, five, six, seven years ago, just before COVID. The thing was I've got very long hair. I've got a very long beard and I'm an ex what you call lifestyle Biker one of the ones that you wouldn't want to take home to your mother Long hair, you know the sort the ones that are true fun that don't cause harm to anybody There are lovable big teddy bear type people So you get it, I wear old leathers and old jeans and when I went to see my neurologist all those years ago I was in my bike club gear and I had an 1100 Yamaha dragster and he did not like that and he did not like me and he took an instant dislike to me or so it seemed. But ever since that event, I used to see him at an outreach center, but he refused to go to the outreach center, and I refused to go to the main hospital, which was a long way off. And I couldn't get there because of my multiple sclerosis, funnily enough, So, I was supposed to go to the main hospital. And after that event, I hadn't heard hair no hide of that neurologist since. So I think he took me off the books on that very day and he never told me. because every time I phoned up the MS nurse for help, she never has referred me to the neurologist or to speak to the neurologist. It's like I was being gas-lighed and I never had an appointment with Progressive MS.

    Medical marijuana and a biker lol

    And another thing he didn't like was I'm in a wheelchair. And because I'm in a wheelchair and smoke medical cannabis, And I also refused to take all the drugs they offered me due to all the horrendous side effects that I'd suffered many years earlier. he didn't like that either. So there we go. It's a case of I didn't fit his paradigm and his paradigm was not going to shift for me. So hopefully he'll retire soon. He basically said that because I was in a wheelchair, he wasn't going to give me any of the nice new drugs, You know get out the wheelchair. I'll give you all the shiny nice new drugs He said because I refused to get out of the wheelchair And refused to go on that paradigm He didn't like that at all..

    I must be a complete moron, people can't understand what I'm saying.

    So there I was telling him my balance is completely shot. I Go over I can't use sticks. I'm out of breath because I've well he won't listen to me He's just interested in pumping me full of drugs and get me out of the wheelchair. I could not believe that it really did my head in well anyway, I am and unfortunately have severe reactions to practically all of the big pharma medical drugs and That's a shame

    Medical marijuana, my life's saver.

    So for over 20 years, I have been smoking marijuana and for four of those years I have been smoking medical marijuana and that is the only thing that has helped me along with the THC CBD oil with my MS, my spasms, my spasticity, the pain and quite a lot of the other things that happen as well. So yeah, you know, there is seemingly, I couldn't take their big drugs, they didn't like me, so there we go. So you tell me what you think, the guy obviously didn't like me, so you know, that's life. I remember sitting there asking him and I told him, I said, "Look, I smoked marijuana." And if I get busted by the police, would you back me for smoking the marijuana? And he did not like that whatsoever. It really did his head in. Well that was what, that was probably eight odd years ago. So you can imagine the hell I've been going through. And now I'm coming closer toward the end of all of this and we will see what the outcome will be in the next few weeks hopefully.

    What I get from all of this.

    If you are like me and you are different, or you are weird, or you're into something, or you dress differently, or you think differently, we all think differently and we're all different. Now, I think no two people are the same. And what I get from all of this, I was plainly not liked for the person who I was. I was a victim. He obviously didn't like the look of me, he didn't like me totally and it really did show. So yeah, I always say never judge the book by its cover, but what you find these days is everybody judges the book by the cover, which I think is blatantly unfair in this today's society.

    Three-wheeled trolley of death!

    Well, I've greased all the bearings, I've tightened all the nuts, and it seems to be going quite well. I've also solved the grip problem as well by getting some grip tape put on the wheels, and hopefully that will help it with the grip issue that it does have. I'm also carrying around a pump and some liquid to put in the tire just in case I get another flat tire as well. Hopefully soon the new safety additions to my mobility scooter will arrive. I will be challenging viper storm to a race lol Yes, it will look a bit yellow or greener. I've got some see me tape because it's what we need to do really to be seen and to be safe because if you can't be seen and those mobility scooters are rather sort of small, aren't they?

    bigger and better scooters

    I don't know why they can't build bigger mobility scooters with a bigger engine, maybe a really small three-wheeled Robin Reliant with an electric engine in might do the trick, something that wouldn't do over say 30 or 40 miles an hour. That would be awesome, something really cheap but I don't think about that do they? If they did I reckon they could come up with some great ideas but unfortunately it's all about governments and rules and regulations isn't it? So we can be waiting for years to get a decent scooter that can do what we really want.

    arghhh shredddder and chainsaw hell

    Still, on a lighter note, all the garden has been done. We had a friend come over and help us with the shredding and doing a bit of chain sawing and all the work's been done and everything is looking glorious in the garden. Unfortunately, I will not be able to benefit from the garden due to my autonomic dysfunction and the histamine intolerance that I have, which is pretty brutal, at the moment and in the height of the summer is even more brutal.

    Still wishing everybody peace healing, love and light, no matter who, what, and wherever you are, on this planet, that planet, this realm, that realm, or wherever, have the most wonderful of weeks ahead.

    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 help

    Good afternoon fellow humanoids and N H I , an old post updated slightly..

    1. What is MS ?

    It’s your immune system going feral and chewing through your own wiring like it found an all-you-can-eat nerve buffet. Not split personalities. Not “just fatigue.” It’s your brain playing Whac-A-Mole with itself… and losing.

    2. Can you cure it?

    A cure? No. We can barely get a clean read on your lesions on a Friday MRI when the machine’s in a mood. What you get instead is a pharmaceutical roulette wheel. Some help. Some don’t. Some make you question your life choices.

    3. What causes it?

    Official answer: genes, environment, immune dysfunction. Unofficial answer: cosmic indifference with a sense of humour. We don’t fully know. Anyone claiming certainty is selling something.

    4. Is brain fog real?

    Completely. It’s like thinking through wet cement while someone throws logic puzzles at your face. You’re not losing intelligence. Your signal just keeps dropping mid-sentence.

    5. Will I die from it?

    Usually not. But you might feel like you’re dying trying to justify your condition to systems that measure illness in paperwork, not reality.

    6. Can I still have sex?

    Yes. Bodies still want what they want. But nerves misfire. Sensations go rogue. Some things disappear, others show up uninvited. It becomes less choreography, more improvisation.

    7. Is MS the same for everyone?

    Not even close. MS behaves like a drunk cartographer drawing new maps on your nervous system every week. No pattern. No fairness. Just custom chaos.

    8. What are relapses like?

    They arrive unannounced. One day you’re functional. The next, your leg, vision, or bladder has filed for independence. It’s not gradual. It’s a system crash.

    9. Why am I so tired?

    Because your brain is rerouting signals through damaged circuits 24/7. Fatigue isn’t sleepiness. It’s your internal processor overheating just to keep you upright.

    10. Will people understand?

    Rarely. Unless they live it, most people reduce it to something smaller, safer, easier to dismiss. You’ll learn quickly who listens and who translates your reality into convenience.

    11. Is stress bad for it?

    Yes. Stress fuels MS like petrol on a fire. And ironically, managing MS is inherently stressful. That’s the loop.

    12. Can I drink alcohol?

    You can. Whether your balance, coordination, and dignity agree is another matter. It’s a gamble every time.

    13. Is it all in my head?

    Yes… in the literal sense. Brain, spine, optic nerves, autonomic systems. It’s all part of the same battlefield. But imaginary? Not even remotely.

    14. Will I lose my memory?

    Maybe. Cognitive changes happen. Some subtle, some not. You adapt, compensate, and occasionally forget why you walked into a room.

    15. Do the drugs help?

    Some slow progression. Some reduce relapses. Some come with side effects that feel like their own side quest. It’s not a cure. It’s damage control.

    16. How do I explain it to people?

    You can try. Or you can conserve energy and let misunderstanding exist without constantly fighting it. Not every ignorance deserves a lecture.

    17. Can I still work?

    Depends on the day, the job, and how your nervous system feels about cooperating. Some days you function. Some days you simulate functionality well enough to pass.

    18. Will I still be me?

    Yes. But altered. Hardened. Adapted. Same core, different operating conditions.

    19. Does it ever stop?

    MS doesn’t follow neat endings. It fluctuates, stalls, surges, retreats. What does change is how you navigate it.

    Closing Note

    MS isn’t poetic. It isn’t inspirational by default. It’s disruptive, unpredictable, and deeply personal.

    But clarity helps. And sometimes the blunt version is the only one that works.

    “Fatigue isn’t sleepiness. It’s system failure.”

    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,or even in other realities

    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
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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

    This is my reality.

    So good morning fellow humanoids and E-T-I. So yes, this morning I had a massive autonomic dysfunction. Attack. It wasn't very pleasant, it was a near ambulance calling situation again this morning. But there we go. What do I do? What do I do in this situation I ask myself? Do I phone for the ambulance, only to be taken to hospital and prodded and poked, and then not understanding what the fuck's going on because nobody will listen to what's actually going on with me?

    Gaslighting

    They will put it down to my heart like they always do and then they will try and frighten me and then a few weeks later I will go back to them and say well you've got it wrong again haven't you especially when the ECG came back and proved them wrong. And that it was the autonomic dysfunction in the first place that caused my heart irregularities that I am suffering with, yet I'm not seeing a heart specialist, I'm not seeing an immunologist and I'm not seeing a neurologist, I've been left at the back of the list to rot in fucking hell! ....

    It actually comes to something when you have to research and do self-diagnostics yourself to get to the bottom of what is actually wrong with you and why doctors cannot. It really does piss me off. It seems when you're in a power chair and you have progressive multiple sclerosis, you're treated like a fucking vegetable. And that, oh, they'd rather talk to the person with you who is standing next to the wheelchair than the actual person in the wheelchair and take what they have to say seriously and listen, It really is disgusting.

    When the Body Shuts Down

    So, as I sit here and I'm going through the end of this, it just feels awful. I feel awful. I hate these attacks when the mind just totally freaks out and the body just goes. And you know what's coming next? It's those frightening experiences that one can go through when your body totally shuts Down and then of course the inevitable will you come back from that. Luckily I have come back three times now from 3 total shutdowns, which is quite surprising.

    There were no ambulances and doctors, no. It was just me, my wife and a medical AI. If it had been left to 111, they took over a day to get back to me. That really did help, didn't it? The ambulance took nearly an hour and, well, I would have been dead and gone by then. When they did the ECG, they said I had to go into hospital in some urgency. Due to I was going to be suffering a massive stroke due to the ECG pointing out irregularities in my ECG.

    Autonomic dysfunction, flare up

    Now, knowing that what I was going through was an autonomic dysfunction, flare up, shut down, attack thing, I knew what was going to happen and I knew that blood clotting, anti-blood clotting, injections, etc, etc, etc, all that stuff's not going to help me in this situation. So I decided not to go into hospital with this in November. And ever since then I have been fighting tooth and nail with the MS service and well with no luck to be honest it seems I'm going round in circles and I'm getting this letter together for pals because I'm fed up.

    I've been going round and round and round in circles for over ten years and I'm getting sick of the fucking gaslighting that's going on with everything. I just want to get sorted out and have peace of mind for once. Take away all that stress and all that horribleness that I go through every day. I just want to know what's going on with me. I need some help and nobody wants to fucking help me. It's just not fair.

    Ignored by the System

    I know that I'm not the only one out there that is going through this, as there are many with chronic illnesses that go through a living hell regularly every day, every minute of the day, and they suffer due to people's incompetence or just general lack of knowledge. I know the NHS does its best with what it has, and I know the staff do their best, but the red tape and bureaucracy is a joke. It has now got to that point where if I can help it, I do not go to the doctors whatsoever. I only go in dire emergencies because to be honest with you, I really have an aversion to go into doctors and hospitals now. I don't trust any of them and I don't like going to see them. I'm caught between the devil and the deep blue sea here and it's just one hell of a fucking frightening experience for me. It's been plaguing my mental health for many years. And yes, I have white coat syndrome as well. I'm sick and tired of doctors and neurologists trying to frighten me into making decisions that I truly do not want to make.

    Life changes

    So like many of you out there, I stand alone. Well, not alone I have Albertine, my wife and some of my family who stand with me. But others don't because they don't take the time out to try and understand what I'm going through. I'm not the same person I was 40, 50 years ago. I've changed beyond any recognition. Nobody would recognize me not even from 20 years ago. That's how much I've changed. My personality, the inner me, has completely changed. People do not understand the changes I have gone through and that I'm going through. It's fucking hard.

    When will people try to understand that when you're going through an illness like MS that affects your brain, that affects all the signals, the cognitive angles, the brain fogs, fucking hell. How the fuck am I still able to do what I'm even doing? I suppose that's only through learned things that I've done. Man, it's a frightening life, but fuck. Yeah, I'm living it and I'm living on the edge 24/7. And to say it's not frightening would be an understatement. So yeah, I'm living on the edge and I'm speaking from raw experience. I'm not an AI bot or some AI chat thing trying to get figures. I'm just trying to put over what it's like suffering with a chronic illness 24/7.

    mental health issues

    When MS starts fucking with your head and starts playing games in your head Then you'll understand what it's like when you freak out Yes MS can make you freak out and make you lose your mind It can make you on the edge people don't understand the mental stress and what we have to go through My god if people truly knew and understood why I have to go through Then they might go a long way to understand why I am like I am and who I am and what I am Yes, I am eccentric.

    I admit that I also have Gnostic views Yes, I also believe this earth is a simulation Yes, well, so what I'm eccentric I'm allowed to have those views But because I hold some weird views people won't speak to me just because of that but being in a power chair as well My god you're left a rot in a fucking hole of puke somewhere in a corner It's just not fair when can we and when will we be treated like normal members of society without having to hide in dark corners

    !!I just wish people would fucking listen to me for a change.!!

    Sending everyone who reads this blog, peace, healing, love and light no matter whom, what or whoever 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

    A deeply personal story about life with multiple sclerosis, resilience, and why awareness must go beyond a single week.

    Good afternoon fellow humanoids and nhi. It appears I have been living under a stone. It is MS Awareness Week. Indeed, yes it is. There is a problem though. It should be awareness all year round and not for one week of a year. Yeah? I think many of you would agree that there should be awareness about MS and all illnesses and all chronic illnesses. Not just for one week or just one day of a year. People should care all year. Why just for one week? It doesn't make any sense whatsoever does it really?

    It's all very well. Some people who have MS, like myself, find it difficult to go on all these activities that everybody else seems to be able to go and do. I for one just don't have the energy anymore and I'm in a power chair and why would I want to go and do archery of all things. Now I couldn't even pull the string bow back. That's how bad things are with me and hell I'm retired now as well. My body is completely fucked. Why would I want to go doing things to make myself feel worse? No I don't.

    So yes, I can appreciate some people with MS can do these activities, but there are a lot who can't. And I think probably we feel maybe a little bit left out somehow, because there's no MS groups anymore anywhere. People with MS don't go to meet anywhere. And does the MS nurse say, "Oh, I know, let's start an MS group up for people to go and meet once a month." You know, that would be a nice thing, but those sorts of things don't happen, do they? I think people would like to meet up and have a bit of fun, have a chat and just generally have a couple of hours of unabashed fun. Why not? You know, not just being stuck at home 24/7 doing nothing and being left to rot. But that's only my personal opinion.

    There are many things I have had to give up because of multiple sclerosis, some of the things I dearly loved doing So yes, I tried to live on the edge up until I retired. I suppose I was a bit of a rebel. I was a bit of an outlaw. I did things my way. I always have. I'm not one of the sheep. I'm not one of the crowd. I'm an individual. I have a voice. Yes, and I'm different and I'm eccentric and I am very proud of that fact. I ripped my blinkers off many years ago.

    I am still learning many many things. Yes, I am and I'm having a great deal of fun learning. I'm using my mind. Yes, I have severe brain fogs and yes, I have severe tinnitus and it is very challenging indeed for me, but I'm never going to give up, even if I can only do ten minutes in a day or even an hour in a day. That is an achievement. Doing a blog post is also an achievement for me as well. Going out, just the local shop, is an achievement for me as well. So yeah, things for me are pretty bad having progressive MS and also this autoimmune dysfunction, which means I can't go out in the summer now because of the histamine from the flowers etc... Well, the hay fever stuff. So there we go. I can't win.

    But what I am doing, I am constantly evolving and changing my life around, so as my multiple sclerosis progresses, I progress in ways of trying to make my life better. So it may take away my motorcycle riding at the age of 65. Yeah, now that was a complete blast, I can tell you. Yeah, ha ha. But it was an 1100 trike I had specially built. and I managed to stay on the road with that for about 20 years. So that was a way of staying on a motorcycle. And yes, I even joined a few motorcycle trike clubs as well and got involved in clubs and all sorts of different weird things. But there we go. I did not let my illness stop me. In fact, my illness spurred me on further and further to be more than I was even.

    So now, it's the computer and doing all the other things that I like doing as well. And I'm still learning and that makes me happy. So yeah, as long as I take it steady and don't overdo it, I think things might be okay. But I don't know the meaning of take it easy, so I always end up overdoing it or hurting myself. You know, that's just one of the things when you have in bought up like me, when you see something that might need doing, you do it. And well, when you're say 20, 25, 30, easy job, but when you're 66, Yeah, it's easier said than done.

    So my words to everybody is, having a chronic illness, for me, has changed my life, perversely, for the better in some ways, but I will say, I'm never giving up, I'm gonna carry on fighting 'til the bitter end. And yeah, I'm not gonna let it beat me.

    Still wishing everybody that reads this blog, peace, healing, love and light, no matter whomever or whatever you are, in the world or universe or multiverses even.

    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

    Well, good afternoon, good evening, good morning, wherever you are. Hello,fellow Humanoids , I trust that you as well as can be expected on this rather cold and very chilly start to the week. I sit here in my chair talking into this dictate to speech program and trying not to laugh as it really is very strange on punctuation etc. Still over the weekend I managed to really cause myself a really big bad severe brain fog. Oh my god I over did it and then some. But I managed to get a lot done. That's the most important thing in this case actually.

    I managed finally to get most of the things sorted out for my podcast. and also I am going to be talking not just about multiple sclerosis but chronic illness and also the effects as well on mental health. And also we'll be talking about things to do with the paranormal and other realms and things that seem to just sort of creep in. I really don't know why, but it's generally about multiple sclerosis I think, and things that go bump in the night maybe. Yes, so I have got a lot of my own produced music which well, I got onto the AI and I put in what I wanted and well, I have music. So I have well over an excess now of a 100 tunes. And there we go. Plus I have guests. And I will be doing these podcasts and putting them up on Spotify. So yes, we're looking forward to this indeed. So to my mind was worth the suffering actually getting stuff done...

    So my weekend was also slightly fraught as well as the good colonel came to visit... he does not like my tin foil hat and my views lol.. I thought he was going to explode... I was seriously pissed off and my attitude did not get any better when he started pretending to listen to me and ignore me.. I thought fuck this and went slightly well pissed off 6 ft 4 dude in a power chair mad... he soon went off into the outside for a vape lol... so it was I had to calm down as I basically slightly lost it...but there we go.. when we are not world wise and blinkered and you pat me on the head and treat me like an idiot that's what you get .... So I will always laff inside and wonder seems he treats me like a fucking idiot lol I cannot get over it the way he is lol

    It's a very crazy thing is, before I was diagnosed with MS, he used to treat me like a normal person, a bit of a role model. But yes, things do change, don't they? Over the years, people seem to think just because you're in a wheelchair, I am disabled, that I am a fucking idiot and I'm sick of it. And yes, I'm speaking out. So if people start saying shit to me, I'm giving it back because I'm bloody well fed up with being treated like an idiot. fed up with being patted on the head like a good boy. No, I am totally fed up with it, and I would imagine there are quite a lot of other people just like me who are as well, all this being talked down to. You know, they must think we are stupid, I have quite a good education lol, left school at 15.., and I went to university at the age of 40 and I've got a few bits of paper as well, and I was self-employed in computers. Yeah, the MS screwed my career up there enough, but guess what? Carried on till my final day of retirement, even though I was struggling every day. Oh yes, chronic illness really does fuck your life up completely, but sometimes good things can come out of it , and it did for me in certain respects. But others, it doesn't. But that's the way the dice roll in life, I'm afraid.

    Oh yes, I'm genuinely excited and looking forward to the podcast and yes it will be soon hopefully. I've got the music, I've got the guests and I've just got to get the rest of my resources and everything together and then it's the red light and off we go. I've got some jingles to make and stuff like that and hey ho you never know it might be enjoyed by one or two people but there we go it's going to be a non-live podcast basically. I was thinking about a live podcast but I decided against the idea as getting numbers for a live podcast would be quite a hard thing to do, you have to be very well established indeed to do anything live in these days. thanks to everybody who is and has been helping me over the past year get to where I am at the moment. So a big shout out to Albertine and all of my family and my extended family. for the encouragement and helping me on my path.

    So as I sit here on Tuesday morning looking at what is on the paper in front of me, I'm smiling slightly. knowing that in a few weeks everything will go live and my first episode on the podcast will be on Spotify and I'm sure that I will find other places to play my podcast as well as there is also Sound Cloud and other places. So let's hope we can get some really good attractions and the biggest when we actually do the podcast and hopefully it will be a every two weekly podcast and maybe it might end up being a weekly one depending on how it goes and how I am because as you know stress is something with MS that isn't pleasant. So yeah I've got plenty of jingles and stuff when I hit those bad walls of brain fog How I'm going to need those.

    So when I actually start the podcasts, if anybody out there wants to be a guest, all they have to do is just drop me an email and we will make it happen as long as it's to do with what we are actually talking about which will be illness and also things to do with the paranormal. I know people might think that is like strange, but I do believe there is a crossover. I believe people with chronic illness can have extra senses and can perceive more than others. And also people who are disabled, have many great psychic abilities, I have often found many don't want to talk about them because they think that by telling me or telling others of their weird experiences it will make them look stupid and silly. But let me reassure you by talking about it, it really does help and seriously it has helped me. So yes, because we are all the same and unfortunately when you're disabled and like me my illness causes my brain to be slightly fried and it causes me to be completely different to most people.

    The most painful thing is, multiple sclerosis has changed me beyond anything that I used to be. People would not recognize me, they would not even really know me. Yes, that's how much I've changed. It's completely changed me, my life and everything about me. In some respects, that is a very good thing. It pushed me and pushed me. Because of the multiple sclerosis, I went to university. Because of the multiple sclerosis, I started up my own computer business. Because of the ms I pushed myself to the very limits of my existence. So yes, I have been through the ringer, as they say, and it has been pleasant in parts and other parts, it has been a living hell.

    I tell it like it is. I speak straight. I do not hold back. People find that a bit of putting when you tell the truth and you tell people straight, no mucking around. that whole university thing started when I was 40 and I'm now what 67 So yeah, things really did change for me. I was diagnosed with MS but unfortunately the diagnosis took quite a long time as in some of my other previous blog posts explained what has happened. of course my first major MS attack was in 1986 but there we go that was 1986 and nothing was really done about that they just put it down to nothing in particular. I think that they wanted me to be a walking wreck who couldn't do bugger all because there we go. In 2003 I had a lumber puncture and I had an MRI and they said we are terribly sorry but you have MS. What I found really silly was I had all the symptoms of MS way back in the early 1970s. So there we go. It took them from 1970 odd to the year 2000 to diagnose me with MS.Slowly getting progressively worse.

    Yes, I have memories of when I was 14, 15, 16, and I would get severe pins and needles, my body parts would go numb for days on end. I was suffering with severe neuralgia, weird nerve pains all over my body. So there was the memory as well. Even back then, I could do something one day, then a few months later, going to do it again, I just couldn't do it because I couldn't remember. And then trying to remember, it really hurt my head, trying to remember. also had the MS belt or the tightness around my chest which was awful. It was the most terrible thing and nobody would tell me what the problem was. So yeah, I really am annoyed at my treatment back in the 70s and 80s. It really was terrible. They just, well, didn't get it...

    So the dictation program totally crashed my machine and I lost everything new on the txt pad duh . Oh the joys. Still I'm going to end it here. It was quite a mega post actually and hopefully well I'm not going to remember what I put because I've completely forgotten. You know what it's like.

    wishing everybody peace healing, love and light, no matter who, what or where you are. Even if you are wearing your tin foil hat in a flying saucer, flying around the flat earth below the firmament dome lol. Hello, hello.

    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

    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
    enter image description here