Multiple sclerosis is My Living Hell

MS mental health

All posts tagged MS mental health by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. AI help to make it less confusing

    A Rough Morning That Set the Tone for the Day

    Well, a very good morning to you all..humanoids and NHI out there who are reading my blog today.

    This week has been one I’d quite happily forget. It all started off well enough: I was sitting in my computer chair, which isn’t that old, when I suddenly heard a loud crack. Before I knew it, I was on the floor—the back of the chair had completely given way. I’m not exactly that heavy, and the chair wasn’t even five years old, so I do wonder what sort of quality it was. It must have been rubbish.

    The Painful Consequence

    The result? A completely wrecked back that’s now incredibly painful.

    A Series of Small Disasters

    Albertine went into the garden to trim the bushes and somehow managed to almost cut her finger off. It was hanging on by what felt like a thread, so we drove to our local hospital, where they bandaged it up before referring her to the main Hospital to see a plastic surgeon.

    That meant another early start. Of course, having an early appointment doesn’t help when the hospital parking is a nightmare. We left two hours before the appointment, yet it still took us twenty minutes to find a parking space. Unbelievable… and that was only 8:30 am.

    The Road Trip in Discomfort

    To make matters worse, I had to drive. I hadn’t taken any medication so I’d be safe behind the wheel, but I felt absolutely dreadful. I haven’t driven much recently, and I really wasn’t looking forward to an 80‑mile round trip while feeling like I did.

    My autonomic dysfunction was in full swing. I had the familiar pain running down my left-hand side from my throat all the way down through my digestive system. At least I know what’s causing it the vagus nerve and the autonomic dysfunction that comes with my MS. It sounds completely crazy to anyone who hasn’t experienced it, but unfortunately it’s become part of my life.

    The “Trolley of Death” Delay

    Meanwhile, my new four‑wheeled “trolley of death” is still waiting for its DVLA registration documents. It drives beautifully, but I can’t legally take it on the road until all that’s sorted.

    A Cautionary Tale of Care and Compassion

    As I sat waiting in the hospital car park while Albertine saw the plastic surgeon, I couldn’t help feeling sorry for her. The injury was nasty, and because it went right down to the bone, there’s no knowing how long her recovery will take. Thankfully it was her left hand rather than her right, but life is going to be quite different over the next few weeks.

    Albertine also lives with rheumatoid arthritis, fibromyalgia, so she’s not exactly in the best of health anyway. It looks like we’re both in for a difficult few weeks.

    The Lack of Support

    To top it all off, our carer won’t be coming during the school holidays. Six weeks without that support. Oh joy…

    A Heavy Load of Physical and Emotional Strain

    I’m really not feeling well at the moment. Between the autonomic dysfunction, severe histamine reactions, and everything else, it’s becoming exhausting.

    On a stranger note, the weirdness continues. There have been more lights and orbs around the house, and I’ve spoken to other people who have seen the same “sepia” type beings and the same liminal shapes that I’ve been seeing. We’ve come to the conclusion that perhaps it’s something to do with the way my brain is wired. Maybe my MS and the changes in my nervous system allow me to notice patterns that most people simply don’t see.

    A Long Career, A New Reality

    As many of you know, I’ve been a psychic reader for many years and worked professionally for over thirty years alongside running my own computer and website business. Looking back, I honestly don’t know how I managed it sometimes. The constant changes in technology and legislation were exhausting. I’m certainly glad I’m retired now, even if living on the State Pension means every penny has to be watched.

    The Rising Cost of Living

    The cost of living is becoming ridiculous. Food prices are unbelievable, electricity costs are frightening, and fuel isn’t much better. I honestly don’t know how many people are surviving. Last winter we barely put the heating on because we simply couldn’t afford it.

    How Do I Feel About Everything?

    To be honest… I’m mightily fed up. When I look back over my life, it often feels as though I’ve taken one step forward and three steps back. But despite all of that, I can honestly say I’m still a happy man. I love my wife. I love my children. Those things matter more than anything else.

    I do notice, however, that my emotions are changing. It’s becoming harder to express how I feel. My empathy is still there, but it’s different somehow, almost muted. Whether that’s age, illness, or simply years of fighting, I honestly don’t know.

    At 67, I’m realistic about life. None of us knows how long we’ve got left, so I try not to dwell on it too much.

    If anyone reading this feels depressed after reading it, please don’t. Life is still worth living. Sometimes you just have to adapt and keep moving forward.

    A History of Accidents and Triumph

    Looking back, I’ve had more than my fair share of accidents. I’ve broken both shoulders, broken nearly every toe, collected cuts where I really shouldn’t have collected cuts, and generally done a good impression of someone who has upset the gods of balance.

    But there is another side to the story.

    Since being diagnosed with MS, I’ve actually achieved more than I ever thought possible. I went to university, became a teacher in adult special education, built and ran my own business for over twenty years, and kept fighting every single day.

    Oddly enough, I sometimes wonder whether I’d have achieved those things if I hadn’t developed MS. The disease challenged me every single day, and perhaps that’s what drove me to keep proving to myself that I could still do things.

    People who don’t have MS will never truly understand what it’s like. The pain. The muscle spasms. The brain fog. The memory problems. The exhaustion. The strange sensations. The feeling that your own nervous system has declared war on you.

    Yet somehow, even on one of my worst days, I still found myself driving my wife to hospital because that’s simply what needed to be done.

    A Moment of Reflection

    Right now I feel dreadful. I’m in pain, my mouth tastes of metal, and my head feels very strange. But such is life.

    One thing I am grateful for is AI. On days like today, when my brain simply won’t cooperate, I can dictate everything into my phone, let AI untangle the mess, and somehow end up with something that resembles a blog post. It’s become a genuinely useful tool for helping me communicate when my MS refuses to let my brain do the job properly.

    Closing Wishes

    So, wherever you are in the world, whoever you are, I wish you peace, healing, love, and light. And remember…

    Take things easy.

    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.

    So here we are, Wednesday afternoon, reflecting on the last week and yeah, it’s been a bloody rough one.

    I ended up at the doctor yesterday. Now I’ve got to wait a week for blood tests and a week-long ECG strapped to me like some kind of cyborg pensioner. Apparently my heart rhythm decided to join the circus right at the peak of Saturday night’s vagus-nerve meltdown. Typical.

    I can honestly say hand on what’s left of my sanity that was the worst attack I’ve had in my entire life. Absolutely mind-bending. Proper frightening. I thought I’d moved past these big episodes with diet changes, lifestyle tweaks, and all the other nonsense we tell ourselves to stay optimistic… but no. My body looked at my efforts and said, “Cute. Watch this.”

    So now I’m stepping into a new chapter where my vagus nerve has gone totally rogue. The doctors are muttering about AF, but let’s be real that was likely just my blood pressure falling through the floor when the vagus nerve threw its tantrum. Still, they’re taking it seriously, so off to cardiology I go. Beta blockers and blood thinners were mentioned. We’ll see.

    This throat issue? I’ve had it for over forty years. Ambulance out about seven times in the last decade. The major attack always lasts 30–40 minutes of pure hell, and then the “come-down” hits like the aftermath of a grand mal — shaking, drained, disoriented, wondering what the hell just happened to your own body.

    It’s been a few days and I’m only just starting to level out. The strangulation feeling in the throat has eased a bit. The burning at the back of my throat is still there annoying the crap out of me but survivable.

    That’s it for today’s blog. A bit raw, a bit sideways, but it’s all I’ve got.

    Have fun, 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

  • Posted on

    Well, it’s Sunday night. The fan’s finally given up its struggle, limping down to slow like it’s seen too much nonsense today. Outside, the air smells stormy clouds gathering like some cosmic joke about to unfold. Perfect weather to match the chaos inside my head.

    Why am I staring at the same damn piece of paper? How many backups do I have? A ridiculous amount. Twice over, because apparently my brain is the gift that keeps on glitching. Cognitive fog? Oh, it’s not just fog, it’s a full-blown London pea soup, and it’s thickening.

    Am I losing it? MS or some other unholy curse tangled deep inside me? Questioning sanity is a new hobby, right next to forgetting why I walked into the room or what day it is. At least when I screw up, I forget about it soon after silver lining or just a cruel joke?

    I’ve got notes everywhere, scribbles, reminders, basically a paper trail that looks like a conspiracy theory board. Which, spoiler alert, leads perfectly into the next post a tin foil hat special. Prepare for some mind blowing madness. Or just madness. Either way, you might never come back to read what happens to this thoroughly fucked-up dude chasing answers nobody wants to give.

    So, seriously does your MS come with its own brand of weirdness? I’m all ears (well, eyes). Need to swap war stories or just shout into the void together? Hit me at sick@mylivinghell.co.uk. I promise I’ll get back eventually probably after a nap or a freak-out session.

    Meanwhile, I wait for the storm, my body aching like it’s been in a fight with life itself. No spoons left in the jar today.

    Cheers to the chaos.

                         “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.”
    

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                                   @goblinbloggeruk -  sick@mylivinghell.co.uk