Multiple sclerosis  is My Living Hell

NHSreality

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

    So I’ve been thinking — I know, shocking — but let's face it, MS really does blow chunks.

    You walk into a doctor’s surgery, tell them what's going on, and they're glued to their computer screen like they're checking the footie scores or writing a memoir. You wait for the questions, but it’s just nodding. Half-arsed. Then they look up at you like you’re the inconvenience.

    Let me paint the scene:

    I rock up in my wheelchair, scraping the doorframe because apparently, accessibility is still a mythical concept in parts of the UK. It’s one of those surgeries that's older than most of the patients — falling apart, steeped in the smell of wet plaster and resignation. I apologise for the door. It's that bad.

    I wheel in and the doc looks at me like I’ve just insulted his nan. I’ve found that neurologists in particular have a real flair for hating me — probably because I ask awkward questions that don’t come with a neat textbook answer. Their reaction? Condescension, mostly. “This is how you should feel,” they say. Oh, should I? How enlightening.

    To be honest, I didn’t want to be there. Waste. Of. Time.

    I’m sitting there trying not to blow a fuse while they judge me like I’m auditioning for Britain’s Got Neurological Issues. These days, though, I’m lucky. I moved. New docs. Better vibes. Now I hand over a list — symptoms, patterns, the works. I sit back and let them squirm.

    Still, I suffer from white coat syndrome so I’m already stressed the moment I see the antiseptic blue of NHS decor. But hey, the list helps. Unless you get that one GP who glances at your entire medical history like it’s a Wikipedia article they can’t be arsed to read.

    Everything, apparently, is caused by MS. I could sprout a second head and they’d say “Ah yes, classic MS.”

    So what have I learned?

    Being me — unapologetically, sarcastically, chronically ill me — is actually kinda liberating. I say it like it is (within reason… ish). I watch the world spin, watch my life fade out into this mad oblivion — and I keep fighting, whether it’s through brain fog, pain, or a poorly designed doorway.

    I’m sick as fuck, but such is life. And I’ll keep going — until my last breath or brain cell. Whichever taps out first.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

              “The views in this post are based on my personal  
               experience. I do not intend harm, only honesty.”  
    
               “By ink and breath and sacred rage, I write.
                             By storm and silence, I survive.”
    

    enter image description here "MS blows chunks. I keep fighting."

  • Posted on

    It was over 30 years ago — but this horror never really leaves you. Like an ex with teeth, it's always in the background. This is my catheter initiation, and yes, it’s every bit as bad as it sounds.

    So, picture this: it's a hot, stressful afternoon. I'm self-employed, sweating it out, holding together life with string and sarcasm. Fast forward a few decades — now I languish on Universal Credit. MS (Multiple Sclerosis) does that. You ramble. You lose the thread. Your bladder decides it's not on your side anymore. And you get a visit from... The Bowel and Bladder Nurse™.

    She came in like Judge Judy's meaner cousin. Silent, judging, late middle-aged, seen it all, smelled it all. I’m a tall bloke with tattoos, piercings — basically a walking episode of "What Not to Bring to Your Urology Appointment.” She didn’t like me. That was clear. It was mutual.

    Fired questions at me like she was being timed by MI5. Eventually scanned my bladder and declared, “Go on, have a wee.”

    Now, I don’t know if you’ve ever tried peeing on command under pressure — but it’s up there with defusing bombs. Naturally, nothing came. She looked disappointed, like I’d failed some secret test. Her solution?

    Her solution? “You’ve not emptied. We’ll have to catheterise.”

    She pulled out a tube — a foot-long medieval torture device. It looked like it came from the same catalogue as plumbing snakes. I looked at her. She looked at me. No gloves, no chat, no dinner first.

    Panic. Stress. Dignity out the window. I insisted on doing it in private. She reluctantly agreed, still glaring like I’d stolen her cat. So into the lav I go. Now imagine pushing a thick plastic cable down the eye of your penis while sweating and crying inside. It didn’t just hurt — it screamed. Blood. Pain. Liquid betrayal. I returned to her like a war veteran holding the remains of my soul.

    “Oh,” she says. “Wrong catheter. You’ve got an enlarged prostate. Should’ve been a curved one. That size’s a bit thick.” Cheers for the heads-up. You couldn’t have led with that?

    (For the record — I used THC/CBD oil, prostate back to normal. Do your own research, obviously. Not medical advice, just bitter experience.)

    I never went back to her. But years later… the next nurse made her look like Mother Teresa. That, my friends, is a story for another post.

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

                “The views in this post are based on my personal  
                  experience. I do not intend harm, only honesty.”  
    
              “By ink and breath and sacred rage, I write.
                     By storm and silence, I survive.”
    

    enter image description here