Multiple sclerosis is My Living Hell

power chair

All posts tagged power chair 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. 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
    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.

    Picture this:

    I’m rolling through reality on my trusty power chair a chrome beast with more personality than most people I know. Long hair streaming behind me like a warning sign, beard untamed, sunglasses big enough to block out the Ministry of Nonsense. Cowboy hat perched low, casting a permanent shadow over my don’t-give-a-toss expression, the battered leather of my biker jacket carrying the stench of rebellion and spilled coffee.

    The world around me? Absolutely barking. Neon jellyfish floating past in the air, tentacles gently brushing the hats off unsuspecting pensioners. Pavements shifting under a river of rainbow tiles, each slab humming like it’s auditioning for Pink Floyd. Traffic lights blink in impossible colours—ultraviolet, emotional blue, a shade of green that smells like marmite and disappointment.

    A pigeon with the head of Alan Watts tries to sell me spiritual enlightenment in exchange for my last Jaffa Cake. Dogs walk people, old buses sprout daisy wheels, and a marching band of mutant toads play “God Save the Queen” backwards as the soundtrack to this feverish promenade.

    I glide on, parting crowds of goggle-eyed normies, the universe distorting in my rearview mirror. “Keep rolling, cowboy,” the universe whispers, “the weirdness isn’t going to witness itself.”

    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.

    Winter in the Waiting Room: Kittens, Cold Snaps, and Full Circles

    So, finally, I’m doing the whole hospital and doctor loop thing again. After much faffing about, I’ve managed to change hospitals let’s see if these new faces actually listen, or if it’s just the same NHS pantomime with slightly different costumes. The cold weather’s rolling in and, trust me, my spasticity is giving me absolute hell. Straightening up bits of my body now takes longer than the average GP appointment so, this winter, it’s bed-bound most of the time, because who can afford to run central heating in the new, improved Broken Britain? Makes you wonder if we’re all just meant to relive the “good old days” of struggling with sod all, forty-odd years ago. Funny how life goes more full circles than a washing machine.

    And speaking of full circle, it’s 41 years this year since I got down on one knee in Otley by the monument and proposed to Albertine. Loud as a foghorn and just as subtle. Best bloody thing I’ve ever done, hands down. Now, on the anniversary, I’m gearing up for another round of medical circus tricks: off to get a heart monitor fitted for seven days joy of joys. Maybe, just maybe, they’ll actually read my notes this time. God knows, I’ve written enough of them. If the neurology and cardiology departments ever joined forces, maybe they’d even work out what the hell’s actually going on, and I could retire from being on 24-hour “ambulance alert.”

    Instead, I’m left dealing with the vagus nerve going full Chernobyl, sending me into another autonomic dysfunction attack. By the time the ambulance turns up, of course, I’m done with the attack and left trying to convince whichever harassed medic is on duty that I’m not, in fact, an attention-seeking hypochondriac. Try explaining the weirdness of your body to doctors and you’ll get the “Google Doctor” eye roll especially if you use the same language they use. Pro tip: NHS staff hate AI, except when they’re using Google to look up what’s wrong with you. Ludicrous.

    This morning, it’s a proper arctic frost out there every car iced up, the world glinting like a badly frosted Christmas cake. The kittens are running riot in the lounge, using the sofa as their own private Thunder dome, which is the only thing making me laugh. Meanwhile, I’m keeping my power chair battery topped up because the cold’s killing the range faster than you can say “Mobility Motability means nothing.” Nothing worse than being ready to go out, only for the chair to die and say, “Nice try, mate. Not today.”

    So, it’s off to the chemist in the machine of death (Rusty One) for my weekly prescription pilgrimage. Albertine reckons the van will start; I have my doubts. Why I can’t get more than a week’s worth of tablets at once is a question for the ages. Maybe it’s a secret NHS tactic to get me out of the house. Either way, it’s still freezing and my hands are so cold I could play castanets with my own knuckles. Temperature regulation? Gone to pot like everything else.

    OT’s been and gone apparently, next year I get a new wheelchair, so there’s a silver lining. Rusty One, meanwhile, needs a trip to the garage, which will no doubt cost me an arm, a leg, and possibly my soul. As I write, the smoke alarm is going off (Albertine’s burned the toast), the kittens are lying on the bed with that “we run this house now” look, and my new bed has bruised my side and pulled muscles I didn’t even know existed. Standard.

    And now, in today’s episode of “What Fresh Hell Is This?” the kitten has discovered blueberries. Yes, you read that right. She’s rooting them out of the container and launching them across the room like tiny fruity grenades. You’d think it was catnip. I woke up this morning with one kitten on my head and the other on my shoulder purring away like they’re trying to heal me by vibrational therapy. Honestly, it works better than half the crap the doctors have prescribed. There’s something about the frequency of that purring that really does help.

    Right now, as I sit in my power chair, both kittens have gone behind the computers to play with the wires so I’m just waiting for the grand finale: either “dead kitten moment” or “there goes my computer.” Albertine hands me the remote and I grin music, even when it’s Deathly Hallows chart stuff, makes the world a bit less deathly. The beat goes on, the kittens plot my doom, and I’m just trying to stay warm, upright, and very much alive.

    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