Multiple sclerosis is My Living Hell

chronic illness journey

All posts tagged chronic illness journey by Multiple sclerosis is My Living Hell
  • Posted on

    🎗️ This Blog is a space for honest conversations about my personal experiences with MS, mental health, and the weird paranormal, liminal, and everything in between. I’m not a doctor, therapist, or expert in the unexplained; I’m just someone sharing my story and offering solidarity. If you’re struggling, please reach out to a trusted friend, support group, or professional. And if the weird stuff sparks your curiosity, remember: stay open-minded, but always prioritise your well-being.🎗️

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

    What If Multiple Sclerosis Could Speak?

    Giving the Monster a Voice

    What If Multiple Sclerosis Could Speak?

    Most people think Multiple Sclerosis is a disease.

    They're right.

    But sometimes it feels like something far more personal.

    Sometimes it feels like a shadow that quietly follows you through life, waiting for the perfect moment to take something away.

    Not everything.

    Just enough.

    A little balance.

    A little vision.

    A little memory.

    A little confidence.

    Tomorrow it might be your strength.

    Next week your coordination.

    Next month your words.

    MS rarely storms through the front door.

    It moves in quietly, rearranges the furniture of your brain, and waits to see how long it takes before you notice that nothing works quite the way it used to.

    The cruel part isn't always the pain.

    It's the uncertainty.

    You never know what the next morning will bring.

    Some days you wake up almost feeling like your old self.

    Other days your body simply shrugs and says,

    "Not today."

    The Invisible Thief

    Living with MS often feels like sharing your body with an unwelcome guest.

    One that never contributes anything useful.

    One that constantly breaks things, then pretends it wasn't there.

    It steals memories.

    It steals energy.

    It steals confidence.

    Then it hides behind the words...

    "But you look fine."

    Invisible illnesses create an impossible contradiction.

    People judge what they can see.

    MS does most of its damage where nobody can.

    That can leave people feeling isolated, frustrated, and misunderstood, even by those who genuinely care.

    So I Asked Myself...

    What if MS had a voice?

    Not the medical language of MRI scans, lesions, immune cells and disease-modifying therapies.

    An actual voice.

    What would it say?

    Would it boast?

    Would it laugh?

    Would it whisper?

    Would it manipulate?

    The more I thought about it, the more I realised something unsettling.

    MS behaves almost like a psychological villain.

    It doesn't usually attack all at once.

    It chips away.

    Slowly.

    Patiently.

    Methodically.

    That idea became the inspiration for a song written entirely from the perspective of Multiple Sclerosis itself.

    Not to glorify the disease.

    But to expose it.

    To drag it into the light.

    To make the invisible visible.

    Why Music?

    Music can express emotions that ordinary conversation struggles to reach.

    A neurologist can explain demyelination.

    An MRI can show lesions.

    A blood test can rule out other conditions.

    But none of those things explain what it feels like to lose trust in your own body.

    A song can.

    Music allows fear, anger, grief, sarcasm, resilience and hope to exist in the same four minutes.

    That's something medicine isn't designed to do.

    Turning the Monster into a Character

    When we give fear a face, we also give ourselves the opportunity to answer back.

    Instead of MS being an unnamed force hidden inside the nervous system, it becomes a character.

    A villain.

    Something that can be challenged.

    Mocked.

    Refused.

    That's exactly what happens in the final verse of the song.

    The disease believes it has won.

    Then the person living with MS starts laughing.

    Starts writing.

    Starts creating.

    The monster expected silence.

    Instead...

    It became the subject of the story.

    Why I Write

    People sometimes ask why so much of this blog mixes dark humour with difficult subjects.

    Because laughter and honesty are not opposites.

    Sometimes they're survival tools.

    Sometimes making the monster ridiculous is the first step towards making it smaller.

    If a song, a story, or even a sarcastic joke helps someone living with MS feel understood for five minutes, then it has already achieved something worthwhile.

    The disease may scar the brain.

    It doesn't get to write the ending.


    Final Thoughts

    Multiple Sclerosis changes lives.

    It changes careers.

    Relationships.

    Plans.

    Dreams.

    But it doesn't automatically take away identity.

    We are still the authors of our own stories.

    Sometimes those stories are tragic.

    Sometimes they're funny.

    Sometimes they're angry.

    Sometimes they're all four before lunchtime.

    And perhaps that's why imagining MS with a voice matters.

    Because once the monster starts talking...

    We finally get the chance to answer.

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

    Tumblr is @livingwithmsblog twitter@livingwithms email warlock@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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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. some AI written content

    Well, it's the weekend, a very good weekend to everyone, fellow humanoids and that you are all feeling as well as you can be. Yes, the weather seems to be still quite warm here in the southwest and as it's not quite the heatwave, it is pleasantly warm outside. I was going to chance a trip on the three-wheel trolley of death, but I thought no I better not because it's going to be Saturday and it's going to be really busy on the roads. And I can't be asked to go riding around on my speedy 8 mile an hour. Power chair of death or whatever you'd like to call it pissing people off. I just keep that for in the week lol.. But to be fair, the motorists around here are all fantastic. I have not had a problem, and they are all very courteous.

    Yes, I have overdone it this past week and I am now starting to pay for it. I can feel that brain fog starting to roll in. You know, like the tide just slowly coming in. Just bathing over you then, bang, that's it. I really should know better, but the problem is trying to stop pushing myself to do things. That's a major issue with me, I'm afraid, and I suppose I really should go with it, but yeah, I suppose the way I was brought up was different. Well kinda carried on with stuff even if we were... Well, yeah. That's the problem. Getting out of that old paradigm, I suppose.

    I suppose I have pushed myself to the very extreme, the very limits of my health boundaries. And to be honest with you, it was not worth it. Trust me, you can push yourself far and then you can push yourself that little bit further. And my God, you will pay for it. I know I have over the years. So, when they say, "Work sets you free," well, for some people, yes, work does set you free, but unfortunately for some of us, work cannot ever set us free. More is the pity, to be honest with you. I suppose the point I'm trying to make is never overdo it. Always know your limits and know your limitations as that's when all the accidents start to happen.

    Yes, I know I've been there. I have had many accidents due to my stupidity at believing I could still do what I used to be able to do. When I didn't have this MS affliction, or was as bad, I've managed to break every toe on my feet and big toe toes. I've managed to break both my shoulders. I've managed to brake various bones over my body falling into things and whatnot. I have managed to rip muscles off bones. I've badly sprained, pulled muscles. My God, I have hurt myself so badly. I even ripped all the muscles off my left hand side. I was trying to lift something too heavy. I learnt my lesson, trust me, many years ago. All because of my own stupidity. All because I thought nah I don't need a stick. Nah I don't need a wheelchair. Nah I'll be okay. Yeah ha ha. Famous last words I can tell you that.

    Because I was in the old mindset, not my new mindset that I have had for the past year or so. Yes, people, I changed my total mindset. My old mindset was destroying me and my life. So, yeah, a total change of mindset at 66 and retired. Well, it may have taken that many years, but it was certainly well worth it. If you can't handle the fire, don't jump in the hot frying pan as they say. Or as my dad would say, "That'll come right. It'll be about right," he say.

    So last year was a real eye-opener for me, losing my dad and my mum. That was quite a mindfuck. That's for sure. But there we go. And yes all the family that said oh we'll keep in touch with you and all these words of niceness how long do you think it lasted well. Maybe five or ten minutes that was it and then it was all let's put him in the cuboard and leave him there. Poor boy pat him on the head that sort of behavior from family who should really know better.

    But to be honest, I'm not really bothered by their behaviour as it's not their fault. It's just the fault of society in general, at the way disabled people are treated. I have found in my life that being disabled, I have been and am still being treated like a second class citizen, or someone who does not exist or someone who does not deserve to exist. But I can shout very loudly and I shout "fuck you, I'm here and what you're going to do about it." And then they usually back off and don't speak to me for over ten years, which is fine with me. lol

    So, yeah, people seem to think that being disabled is an easy life, but I can assure you being disabled is not an easy life at all. Having progressive multiple sclerosis and all the extra issues that I have to go through daily 24/7. I can assure you most people couldn't handle a week or even an hour in my shoes. So, yeah, you know, people who want to judge me, people who want to not understand what I am going through, my issues, how I feel. Yeah, people don't think about that, do they? No. People don't think about the other person's feelings. They just go and they just fuck themselves with their stupid, outdated views and moral compass.

    But the great thing is, having my own blog, I can have my voice heard by others, who also have some of the same issues that I go through. The killness isn't just multiple sclerosis, it is a kaleidoscope of other illnesses. I will get the AI to put in some of input here, I think, about that.

    Here’s a concise list of chronic illnesses that often co-occur with or are similar in impact to multiple sclerosis (MS). Use these to illustrate the “kaleidoscope” of conditions you can face:

    Neurological autoimmune conditions: neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, chronic inflammatory demyelinating polyneuropathy (CIDP), myasthenia gravis

    Autoimmune diseases: lupus (SLE), rheumatoid arthritis, Sjögren’s syndrome, Hashimoto’s thyroiditis, Graves’ disease

    Chronic pain & fatigue syndromes: fibromyalgia, chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

    Small-fiber & autonomic neuropathies: peripheral neuropathy, small-fiber neuropathy, postural orthostatic tachycardia syndrome (POTS)

    Gastrointestinal chronic conditions: Crohn’s disease, ulcerative colitis, celiac disease, irritable bowel syndrome (IBS)

    Endocrine/metabolic disorders: type 1 diabetes, adrenal insufficiency Respiratory chronic diseases: asthma, chronic obstructive pulmonary disease (COPD)

    Cardiovascular chronic conditions: hypertension, chronic heart failure Kidney & urinary: chronic kidney disease, interstitial cystitis

    Skin & connective tissue: psoriasis, eczema, systemic sclerosis (scleroderma), Ehlers–Danlos syndrome (hypermobile type)

    Mental health & neuropsychiatric: major depressive disorder, generalized anxiety disorder, bipolar disorder

    Neurodegenerative disorders: Parkinson’s disease, early-onset dementia Blood & immune: chronic Lyme disease (post-treatment Lyme symptoms), chronic infections (e.g., HIV with long-term effects)

    Others commonly overlapping: migraine (chronic), sleep disorders (insomnia, sleep apnea), chemical sensitivities/mast cell activation syndrome (MCAS)

    thanks Ai for that.....

    But when you do look at that list, it is to say the least absolutely stunning mind blowing. I have a few of those issues on the list...

    Still, let's hope that you made some sense of all of this. I don't know if I did or not. Still wishing everybody healing, love, light and peace. And yes, no matter who or whatever you are. No matter wherever you are.

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

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