Multiple sclerosis is My Living Hell

MS relapses

All posts tagged MS relapses 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.

    Some weekends hit you with a light slap. This one picked me up, shook me like a cocktail, and threw me at the floor for good measure.

    Saturday night… well, that one’s going straight into the “Top 3 Worst Episodes of My Life” hall of fame. My body didn’t just glitch — it staged a full-scale neurological mutiny.

    The Hit

    It came out of nowhere. One moment I was fine, the next my entire autonomic system pulled the emergency brake and launched me into panic hell.

    My throat tightened. My swallowing screwed up. My stomach dropped like I’d been pushed off a bridge. My vision became a muffled, tunnelled mess. And my whole body went cold not “a bit chilly,” but corpse-cold.

    I’ve had MS for years. I know its tricks. But this was different. This was violent. This was instant.

    And here’s the truth I left out the first time: I was scared. Properly scared.

    I thought, “Shit… this is it. This is the one where I don’t get back up.” Calling 999

    Albertine had to call an ambulance. I didn’t have a choice. This wasn’t a “ride it out” moment. This was the full autonomic shutdown vibe sweating, trembling, throat closing, body shaking, heart refusing to “thump” properly, brain screaming doom.

    And then came the worst part:

    Forty minutes. Forty minutes of waiting, fighting my own body, trying to stay conscious, trying not to choke, trying not to spiral.

    If you’ve ever had a neurological event and waited for an ambulance, you know exactly what that wait feels like. The clock becomes a sadist.

    My ears were ringing. My blood pressure tanked. I genuinely thought I was dying.

    By the time the ambulance arrived, I was a wreck. They checked me over, confirmed the BP was ridiculously low, stabilised me, and got me back into something resembling a human shape but the damage was done. My system was fried for the night.

    Sunday: The Aftershock

    Sunday wasn’t much better.

    My head felt like a pressure cooker. That weird prickly sensation on the right side of my skull the one that always shows up after an attack set in like an uninvited guest.

    My hands pulsed. My head pulsed. The tinnitus screamed like it was trying to win an award.

    Breathing felt “off,” not in a dramatic gasping way, but that unnerving internal panic: “Something’s wrong… but what?”

    My vagus nerve the drama queen it is had clearly had enough and was still sulking.

    And my cognition? Let’s just say I’ve had smoother days. I felt detached. Off. Like I was watching myself from two feet behind my own head.

    Monday: The Reset

    Now it’s Monday afternoon and I’m calmer, but still not quite right.

    The pins and needles are doing their usual “good morning, we live here now” routine in my hands and feet. My head pressure has moved to the top middle that annoying “brain has opinions” spot. My throat feels clogged with half a ton of imaginary phlegm.

    But I’m stable. I’m talking. I’m thinking. And I haven’t keeled over.

    That’s progress.

    Tomorrow: The GP

    I’ve got the doctor sorted for tomorrow, and that’s the sensible move. I’m not messing about after this one this was the worst in years, and we finally know enough to start demanding answers instead of shrugging and hoping.

    Chest tightness? Swallowing issues? Autonomic chaos? Blood pressure on holiday? Yeah, the GP can have the whole bloody report.

    I’m not going down early because I tried to “tough it out.” I’ve seen too many people die playing that game.

    Why I’m Writing This

    Because this is the real face of chronic illness not the brochure version, not the charity-approved inspirational poster. This is the gut-level reality.

    My blog is about truth. Raw, ugly, darkly funny truth.

    Life with MS isn’t pretty. It isn’t tidy. It isn’t inspirational every day. Some days it’s a war you didn’t ask for and you fight it anyway.

    If you’re going through similar, I want you to know this:

    You’re not weak for being scared. You’re not dramatic for calling 999. You’re not overthinking it if your body is shutting down. And you’re not alone.

    We survive these attacks by being honest, prepared, and stubborn as hell.

    I’m still here. Still fighting. Still writing.

    Tomorrow will be another chapter. I’ll survive that too.

    I thank my wife Albertine she saved me I love you forever....

    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.

    **

    Disclaimer: This post is my brutally honest opinion on Cladribine and MS treatment. It’s not medical advice talk to your doctor before making any treatment decisions. If you’re easily offended by dark sarcasm, read with caution.

    **

    Multiple sclerosis treatment has always been like picking your poison: you either get relapses and progression eating you alive, or you take drugs that come with their own private horror show. Enter Cladribine (Mavenclad, for the branding fans) originally a cancer drug, now handed out as an MS therapy.

    Yes, they literally borrowed chemo and said: “Here, this might help.”

    What It’s Supposed to Do

    Cladribine targets your lymphocytes specifically memory B and T cells the immune troublemakers that think your nervous system is a snack. By nuking them into submission, it slows down MS attacks. Less immune warfare = fewer relapses, fewer shiny new MRI lesions, less chance you end up in the disability fast lane.

    The sales pitch? It’s not a daily grind. You take the pills two short treatment weeks a year, for two years. That’s it. Sounds almost civilised. (Technically, it’s split into two courses per year: Week 1 and Week 5.)

    What It Actually Does

    Apart from kneecapping your immune system? Here’s the side-effect menu (thanks, Drugs.com):

    Hair loss or thinning like chemo-lite for your head.

    Fatigue squared as if MS wasn’t already holding a grudge.

    Rashes, mouth ulcers, fevers welcome to the MS + chemo carnival.

    Heavy Hitters:

    Infections: shingles (herpes zoster, ~20–25% of patients), TB, hepatitis reactivation. When your immune system’s on a smoke break, everything wants a party.

    Liver damage.

    Possible increased risk of cancer trade one disease for a raffle ticket to another.

    Other important notes:

    Cladribine is strongly contraindicated during pregnancy.

    Live vaccines should be completed before starting treatment.

    Why People Still Take It

    Because untreated MS is still worse. Clinical trials show Cladribine cuts relapses by ~58% and slows disability progression in relapsing MS (RRMS). For some, the two-weeks-a-year convenience outweighs the roulette wheel of side effects.

    It’s not pretty. None of this is pretty.

    Dark Sarcasm Corner

    Doctor: “We’ve got a new MS therapy.” Patient: “Fantastic, does it cure me?” Doctor: “No, but it gives your immune system a two-year hangover (or longer, if you’re unlucky).” Patient: “And side effects?” Doctor: “Think of it as… trading MS for a subscription to What’s That Rash? magazine.”

    The Brutal Truth

    Cladribine is not a miracle. It’s not even a nice drug. It’s chemo in a capsule that sometimes buys you time and slows down destruction. That’s all.

    Every MS treatment is a trade-off. Cladribine just makes it brutally obvious:

    “Would you like your MS gnawing through your spine, or would you rather take a drug that leaves the door open for cancer, infections, liver issues, and shingles?”

    Pick your monster. That’s the reality.

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

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    𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ⚯̲𝕿𝖍𝖊 𝕺𝖇𝖘𝖈𝖚𝖗𝖊𝖉 𝕽𝖊𝖖𝖚𝖊𝖘𝖙 ᚨᚹᚨᚱᛖ

    ⚯̲𝕿𝖍𝖊 𝕺𝖇𝖘𝖈𝖚𝖗𝖊𝖉 𝕽𝖊𝖖𝖚𝖊𝖘𝖙 was acknowledged. Shard is listening.