Multiple sclerosis is My Living Hell

dark humour

All posts tagged dark humour 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...some AI medical content

    Well, it's Monday afternoon and I am in quite considerable pain. I can't move my neck to my left or to my right and have been unable to do for a couple of days. Pain is absolutely unbelievably bad news. I'm still carrying on, but let's hope it goes soon. Apparently, I've got some ossyphates in my neck, that's bone growths that also complicate things with

    the progressive MS and the autonomic dysfunction, yes, and a few other things wrong as well. But yeah, multiple sclerosis does not come on its own.

    It can cause other things to happen to you. Indirectly due to the MS and what it does to your body via the nerves. Find enclosed a short brief statement from an AI about what it does.

    AI Stuff Worst-case impacts of progressive Multiple Sclerosis (MS):

    Permanent mobility loss – progressive weakness, spasticity, and balance failure can lead to needing a wheelchair full-time. Paralysis – partial or, in severe cases, near-complete loss of movement in legs or arms. Severe fatigue – crushing, daily exhaustion that doesn’t improve with rest. Chronic neuropathic pain – burning, stabbing, electric-shock sensations. Loss of bladder & bowel control – incontinence or retention requiring catheterization. Sexual dysfunction – reduced sensation, erectile dysfunction, loss of libido. Cognitive decline – slowed thinking, memory problems, poor concentration (“brain fog”). Depression & anxiety – very common; risk of suicidal thoughts is higher than in the general population. Personality or mood changes – emotional lability, irritability, apathy. Speech & swallowing problems – choking risk, need for modified diets or feeding support. Vision loss – optic nerve damage leading to blurred or permanent partial vision loss. Tremors & coordination loss – severe shaking that interferes with eating or writing. Muscle contractures – limbs becoming stiff and fixed due to prolonged immobility. Pressure sores – from long-term wheelchair or bed use. Recurrent infections – especially urinary tract infections and pneumonia. Breathing weakness – in advanced stages, respiratory muscles can be affected. Increased cardiovascular risk – reduced mobility contributes to higher risk of blood clots, deconditioning, and secondary heart strain. Shortened life expectancy (in severe cases) – usually due to complications rather than MS itself. MS doesn’t directly damage heart muscle the way a primary cardiac disease does. But it can disrupt autonomic nervous system pathways in the brainstem and spinal cord — the wiring that controls heart rate and rhythm. When those signals misfire, you can see: Heart rhythm abnormalities Conduction issues (like bundle branch block) Unstable heart rate (too fast, too slow, erratic) Blood pressure dysregulation Orthostatic intolerance (feeling faint on standing) On top of that: Reduced mobility → deconditioning of the cardiovascular system Chronic inflammation → increased long-term cardiovascular risk Severe fatigue → less activity → compounding strain on the heart So while doctors sometimes treat heart issues as “separate,” in progressive MS the nervous system disruption can absolutely be part of the cascade. And the frustrating bit? It’s often under-discussed.

    thank you AI

    You see it's not the multiple sclerosis that will kill you. It is often something else. But as the AI pointed out, it's not very well discussed. It's not a very big topic. So I intend to research and do some more on this topic because it might be very interesting to some people.

    I don't think people realize just how our immune system screwed. People with MS and progressive MS have a completely screwed auto immune system. So, just a common cold to us is the worst thing that can happen. Imagine flu or something of that order. That is the worst thing that can happen to somebody with MS. Or a chest infection. That's not the best either. Or sickness and diarrhea. That's even worse. I mean, there's some of these things people don't realize. When you have an altered or a dysfunctional immune system, it causes havoc over all of the body. Yes, it does. It causes total havoc.

    So you have to relearn how to live your life daily because of all the issues that you have. And to be honest, people probably wouldn't realize what you have to do just to overcome one or two simple issues in a day. The fatigue, the brain fog, and the sheer pain and the sheer pain in the head and the pain in the body. And that feeling in the head of, I just can't go on, I've just got to go and lie down. And then when you lay down, you're just as bad as when you were standing up. Yeah, that's fatigue, mental fatigue, stress, and all those things that other people kindly put in a cupboard. and politely do not talk about either, because it is an emotive subject between couples, I would imagine, and even parents and children and parents Who are unfortunate enough to be dealing with multiple sclerosis or any chronic illness.

    So, I have been trying the Linux Mint over the past few days and it has been going quite well. I've only been managing bite size 10 minutes here and 10 minutes there. But I must say I'm learning one or two new things a day and I think that's just enough to be remembering. So on this blog post I decided to use AI Help with some of it, but not all of it, just the bits that are medical so I don't fuck up. Aha!

    The weekend was quite fraught with the kittens who were in season and Missy the kitten has taken to jumping on the top of the door and looking around the room and mewing at us. So yeah, that's all good, isn't it? So she's done most doors in the house now and we've got scratch marks up and down doors. Oh well, that means Tom the painter man's going to have to come round and sort that out.

    Still, I suppose it's the physiotherapist this week, but I may just put him off because I feel really bad, and I think that's what I'm going to do. Hopefully by the end of this next month, we should have the new garage door and side door fitted. We've been waiting for quite a time for this. And hopefully it will coincide with my new power chair, the quickie 300 that I'm getting. I've been waiting a few years, but it's definitely worth it. I'm going to be able to get out and about, and I'm able to go out and live my life and do those things that you just cannot do on the three-wheel trolley of death.

    Talking of the three-wheel trolley of death, we have to head out in the week to go to the chemists. To go and see the AI machine of certain death, destruction and dementia. The chemists machine that distributes the prescriptions. Yes, it always seems to go funny when it sees me it will break down. Yes, it is a machine that hates me. But my three-wheeled machine of death, let's hope the battery is up to doing what it needs to do. As yes, how many more new batteries do we need this year? and the three-wheel trolley of death with the brakes that are non-existent and the balance of a drunk kipper on a night out with a jellyfish whilst drinking whiskey.

    And changing the subject totally, we have seen quite a few white orbs in the living room. We have managed to record them on infrared cameras. And we are looking at the film and seeing what they could possibly be. As many years ago, I would say 30 or 40 years ago, I was handed some photographs by some very strange people claiming to be reporters from a local paper. And they handed me these photographs. And it was pictures of fields and they had these white orbs. And they were bigger than footballs. I would say two or three times the size of footballs. Now, funnily enough, I put these pictures through AI because I thought they were fake. And the AI said these photographs were genuine. But going back, this is probably the early 90s, late 80s when this paper came round. And anyway, I had contacted the paper and they'd never heard of these people before. So yeah, that was quite a mind fuck.

    This is when all the great strangeness started And in real terms has never since gone away. Just because I reported something, 'bufora' and it caused a chain of events which, to be honest with you, has blown my mind for the past 42 plus years. But still, that's life, as they say.

    Still fellow humanoids, I trust you had a great weekend. If you didn't, I can well understand. Anyhow, sending everybody out there, peace, healing, love and light, no matter who or what you are. Especially the sentient ones from all the weird dimensions and places out there. You are no doubt watching us. I'd like to say a big hello, make yourself known.

    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.

    please remember I suffer with severe cognitive disfuction this may be a confusing read non ai content

    hello fellow humanoids Well after months and months of waiting I'm going to test my wheelchair out today yes a three hour round trip but it will be well worth it rusty one has to go in the garage on Wednesday for a new starter motor and a lot of welding to be done for the MOT this year it never ends pay pay lol it doesn't matter that you're on a pension and can't afford much haha but such as life I suppose the whole past load of days has been an absolute nightmare my autonomic dysfunction got set off on Friday and I have had the weekend from hell

    It's dark outside and it's raining and it's very cold indeed my body is giving me hell I am trying to stretch my legs and arms to try and get them working properly just think no more hassles I'm going to have an actual proper power chair without any hassles of the three wheel trolley of death or the other trolley that went dead battery lol

    The most important thing is I will be able to get new things done that I have not been able to i'll be able to go out be able to go and see stuff for a change instead of being stuck in the van it's been a long time since I've been anywhere must be two years now it seems that I've I still have to self-isolated myself even though I'm now retired what with all the colds and flu and all the lurgies and Bugs going around lol but to be fair I Self isolate every winter as I don't see any point in making myself worse than I already am

    The autonomic dysfunction came into full Force over the weekend because I dared eat some ground sunflower seeds and of course that set off the histamine reaction and it was bad it really is quite nasty to be fair here's just a few of the things that happen when you go through this autonomic dysfunction stuff So yeah, it's been quite a mad few days. Indeed, the autonomic dysfunction is getting less, but I'm hoping today for very good news indeed.

    I am slightly feeling weird and very weirded out as the doctor will be ringing me with the results of my ECG, the week long test that I had before Christmas. Yes, and I'm hoping that things work out on the phone as I have my views on Whats up with me, and I just hope that they can understand what I'm going through as I am going through something that no human should ever have to go through. It's the most horrible thing I've ever been through.

    So today Rusty1 went to the garage, yes Rusty1 is having the starter motor fixed and the rest of the rust taken care of. So we'll be hearing later on today how that went. Yes indeed, I'm thinking very very big bill. When is it ever a small bill when a vehicle is concerned? That's what I have to ask myself. But then again it is essential to my well being as if we didn't have Rusty1 I wouldn't be going anywhere would I? Yes I would not as I am a virtual prisoner in my own home until I get my proper power chair.

    Speaking of the power chair, yes on Monday, I did the three hour trip and I have tested the power chairs that they had there and I'm getting apparently a quick 300 and hopefully I should have that within a month or so. So that was really well worth the trip but I must say as soon as I got back I was so knackered it was unbelievable. I had to go straight to bed. The old brain fog was quite remarkably bad along with tinnitus and the pain in my eye it's like a hot needle going through my right eye is no fun. Still I'm glad I didn't have to drive. Thank you Albertine for that.

    So I'm sat here now waiting for the doctor to phone. Yes, I've got white coat syndrome and I'm not looking forward to the phone call and my nerves are jangling like there is no tomorrow because well, I have that Feeling of Doom as usual, especially when it comes to the doctor. Yes, so this is a bit sort of all over the place, this one, and yeah, I hope that you don't have issues reading my stuff because it's all over the place because I never know where I am. That's why I used to stick it through the AI, but it used to sanitise it too much and I used to end up arguing with the AI and that's never good for my stress levels...

    I am still seeing weird stuff as well and I have been trying to get professional help and I'm getting nowhere fast. These things I keep seeing. Yes, I have spoken to doctors, neurologists and all sorts of different people and I think I'm an eccentric nut. They seem to sort of say, 'Yes, yes, sort of pat me on the head' and I copted a look at one of my notes and it said, 'As long as it keeps him fucking happy.' 'I should bloody cocco, why would somebody say that?' A professional. 'They don't know me, they don't know who I am, they don't know what I am, yet I'm always fucking judged.' I hate being judged by people who don't know me, it's one of the biggest things. Because I'm in a power chair, I dress different, I look different, my attitude's different, I am a person inside, you know. These sort of people seem to forget some people do. And to me, I find that highly offensive.

    now am I a pensioner, but I'm an eccentric pensioner with progressive multiple sclerosis, and severe Autonomic dysfunction, and yeah, I'm different. And I get treated like a moron. Oh, I know, let's talk to the chair. That's the wooden chair next to me, because we might get more sense out of it. Really? Honestly. It really does piss me off when people talk down to me. Or people think that I am stupid because I am in a wheelchair or because I am disabled. Do you know what? It really angers me when people ignore me and then speak straight to Albertine about me without asking me. I am sick of it. But when you say something you are then accused of being an angry or weird person. You just cannot win. It really is a minefield out there. So in the future I am just going to refuse to say anything and I am just going to Stick to the basic facts. Nothing else. That's it.

    sending peace healing love and lite to everyone

    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 very 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.

    hello fellow Humanoids So it's Friday afternoon and I'm looking out of the window and the rain and the wind is howling absolutely everywhere. Well, the outcome of this week has been okay I suppose. The AA man came out and he put the new battery on our rusty one. And then we were told the starter motor is iffy. So rusty one needs a recondition starter motor. Oh the joys. Rusty old vans I should know and then there's all the other bits and pieces that have to be done with it as well. The weather here and the salt air really doesn't do the van any favours but it has to be done I suppose.

    Still, I've got a list of exercises from my physiotherapist to be doing to help. That was an interesting morning for sure, doing all that, as we got the dates wrong, and that was funny as well. Yeah. We thought it was the 28th and it wasn't. We got it wrong, oh dear me, never mind. But it all got sorted out. And I have a list of exercises I have to do in the mornings and evenings. So there we go, that should help with not getting to muscular atrophy as they call it I think.

    Since I am no longer putting what I write through the artificial intelligence, I don't know whether this is a good or a bad thing or not. Do people want my raw voice? As it comes on the paper, spelling mistakes and all the other murdering of the British language that I do. Order people want me to put what I do through the AI and make it sound a bit more flowery and a bit more nice and a bit more sanitized. What do people want the bitter truth? Or do they want sanitisation? This is what I ask myself.

    This blog isn't about having millions of people looking at what I have written and what I'm going through. It's about maybe two or three people reading it and finding some sort of help in my life, in my madness that is me. And if it helps people or a few people that's what it's all about in the end. I now have Missy the kitten looking at me and viewing as though to say, feed me please.

    Still, it's now Saturday morning and it is absolutely chucking it down with rain. The clouds are dark as can be. It's just so unreal. Again today my head feels like a big pea souper. But there we go. I woke up in the night with the usual left hand side pain. When those nerves start going, my God there is no let up. And the pain is absolutely unbelievable. It's all to do with the way. I know this is not a good thing to talk about how the feces lies in the colon or the tube leading to the bum.

    And all the nerves are up from my anus all the way up to the top of the throat. So all my nerves are like atomic bombs going off. So, as the poo goes through the tubes, it's nuclear bombs, you know what that's like. And the only way the pain ever really dulls down is when you've had a poo. And that's if you can have a poo, because nine times out of ten with all the medications, a lot of people find that constipation is a really, really bad side effect to a lot of modern day medications.

    So, the thing is, you need to hydrate like crazy really. You need to drink a lot and take lots of nice fibre. I know. I tried all the medicines or the things to make you go, things to make you stuff. I've tried and been down the chemists and the doctors for all these problems, but I managed to sort most of it out myself by the change of diet, which has completely got rid of any constipation, and now I go regularly every morning without fail. I put this down to my total change of diet due to my histamine issues with my auto-monic dysfunction and my multiple sclerosis and the vagus nerve etc so I am on a limited diet.

    So yes, just a basic flatbread with what? Four Or five ingredients? That makes all the difference. And I've managed to have it tailored to my specific tastes and needs. And my word, it really does work. No more constipation issues and going like a gooden as they say here. I will put a recipe up for the flatbread at some time. So you can see what you can put in it and how good it is for you. My word it, does an half change your stomach and your gut. I haven't felt this stomach good in absolutely years. My acid in my throat and stomach has stopped. It's unbelievable the changes.

    Still, I hope you don't find this too boring, but yeah, it's been a bit of a bitch of a week and it's been very expensive. Rusty One now has to have a new starter motor, which, well, let's face it, is gonna cost. Still, I have my appointment for to go to see my new power chair. Yes, that apparently is in February, so I look forward to that. A nice three hour round trip. Why, they couldn't do that at my local hospital. Well, I do now. Do now. No. So there we go. Still, that's it from me and it might be more interesting next time round. But until then, sending everybody peace, healing, love and light, no matter whom or whatever or wherever you are in whatever universe or multiverse or place.

    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 I am today thinking it's Sunday when it's in all reality Wednesday. Yes, it seems that I've got my days rather mixed up. It seems everything just goes into nothing. I suppose it's hard really. When you think about it, it's really hard sometimes to think and to think with clarity. And then if you've got to think about things that are, say, from a while back, it may have problems and it hurts my head. Some days are better than others, but it's cognitive fog is really starting to get me down.

    I want to be in a dark room with my eyes closed listening to gentle soothing music, smoking a reefer or a joint or whatever you call it. No I'd rather be doing something different with my mind but I can't. I hate these days of extreme fog. I hate them. I hate being able to do nothing. It's the worst feeling ever. I still haven't phoned up the AA and got it together to get them to come and sort my van out either. So yeah I don't even think I've been out. So yeah that's how I'm feeling at the moment. I just feel as though everything's just too much.

    And the cold well, get real shall we? Let's get real about the cold and how much it's costing on the heating. I'm spending 60 pounds a week on heating. That is unbelievable. I'm now having to cut down on my food because I can't afford to eat properly due to my issues that I have with my diet. So being retired now and on a pension it does not go very far and the sort of food I need in my diet has to have no histamines in. And also food that won't cause my body to produce histamines. So yes it's an expensive diet. So I'm either going to go cold or I'm going to go hungry. I haven't decided yet which. It's incredible that every single last penny that I have is now spent on bills. I have to scrimp and save all my savings have gone. Everything's gone. I find myself looking around for the old pennies and ten peas around. It's no joke now. Things are getting quite desperate. And I suppose it's going to cost 200+ quid for a new van battery. So yeah, I'm going to have to go without something else as well now. So yeah, it's all very well, but when you're in the position of being disabled, things aren't very easy. People seem to think we have an easy life, but I do beg to differ.

    And the worst thing is there are people even worse off than myself. So yeah, I do see the way things are. And things are getting quite hard at the moment. But I'm going to try and hang on in there for as long as I can. As I'm sure things will probably slowly start to get better. I can't wait for the warmth to come. I can't wait to see that sun beaming through, giving me my vitamin E. Yes, I'm looking forward to the summer and the spring. My favourite times of the year.

    The tinnitus at the moment is raging in my head and for some reason in the middle, well no it's in my right ear. It's all about an in chin on my right ear and it is playing a symphony of the whistling that is awful and today no matter what music I play it's not hiding the fact, not even white noise. It seems to be on one of those I'm gonna make you suffer days. Anyhow I'm gonna have to stop here as my eyes and now really really hurting as well. So yeah wishing everybody peace-healing love and light wherever you are whoever you are and yeah there we go.

    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.

    Still it Sunday afternoon and the weather outside is grey and typically awful this time of year. As I look out the window it's just grey and dull, dreary, horrible, nasty, south-western, blah weather. But I am reminded today is Yule. So I wish all those who celebrate Yule a very happy Yule. And if I don't get to blog again before, I wish everybody seasons, greetings, holiday greetings or whatever greetings you have. If you're working that day, have a good day and all that sort of stuff. But from my perspective, of my point of view, Christmas day is just like any other day, just with a bit of tinsel on top. Does it make me feel any happier toward people? Probably not at Christmas. I've turned into a real bar humbug type of dude. Yeah, I do it for the grandchildren. And that's about it, really. Otherwise, I wouldn't bother with Christmas as Christmas lost all its meaning 40, 50 years ago, I think. It just got too commercial. And I think the true meaning of family and togetherness and happiness has been lost. So yeah, it's all more about all who can buy this, who can have that and who can afford this and that. I'm just generally not into all that. So yeah, I don't send Christmas cards, haha. And I don't get any back. Well, I haven't got anybody who sends me stuff anyway, so that really doesn't bother me. I think all my family disowned me when they found out I had MS because they couldn't handle it or me, too many skeletons in the cupboard. Yeah, so it's always easier to blame somebody who is an outsider than themselves or think of others. So yeah, I'm a cookoo in a few nests, but that's not my fault. So well. . Well, that's their loss, isn't it? But then again, families are complicated. I have many brothers, many sisters, many half-brothers, and many half-sisters. Yes, so. I wish them all happy, whatever. And hope that they keep on forgetting me because that would make me a lot happier as they never wanted to understand me anyway. As I am the black sheep, the weird one of the family, the one that has the illness, the one that thinks differently. The one who dresses differently, the one who is kind of out there a bit, I suppose. So to my family, the adopted one wishes all his true brothers and sisters out there the happiest seasons, greetings and holidays and everything. And for all the ones out there who I don't know of, have a good one. Yeah, things can get funny when you're adopted. I thought this blog's about really, it's about what I'm thinking about at the time, not the way the AI used to push me down a certain line. So everything's going to feel higgledy, there's going to be spelling mistakes because as I talk into this microphone and see my words going on to the paper, I can see how it interprets my words. Some of the words will be different, but I don't care because at last I'm free, free to speak my mind. Oh yes, and the worst thing ever to happen to me was with my MS that is was well. Do you want to know? I bet you do, the most worst thing that ever happened and the most embarrassing thing that ever happened. That's always good to know isn't it? Well, when I am doing the spoken word on Spotify, my monthly or bi-weekly podcast, I'm going to be telling all from what it's like to receive catheter training from a really, really, well, yeah, you're just unbelievable stories of 80s and how things used to be and what it's like to receive needles in the spine and stuff like that, the horrors. I'm going to tell it like it is completely unvarnished because that's what you really want, isn't it? Or do you want me to sanitise everything and make everybody feel good? Or do you want to hear it as it is? You know, this is what we really want to know. doing this is so therapeutic. My brain fog is kind of floating in and floating out and I can feel my head pounding in the left and right and my fingers and my feet are like pins and needles. It does feel completely weird and my sort of tongue is being pulled down hard on the left hand side and also my throat is feels like there's something being pulled down in my throat as well. You know what that feels like if you've got MS it's just a nasty horrible feeling but unfortunately the only way of getting around that besides I suppose meditation is going to see somebody and getting help and relief. I use THC, cannabis oil or even medical marijuana or I have been going to the doctor and been getting some lorazepam recently to help and also some benzodiazepine as well strangely. So with these severe attacks I seem to be getting at the moment this autonomic dysfunction stuff when it's all sorted out hopefully I'll be able to get off the big pharma stuff and yeah he's hoping that's going to get sorted out after Christmas but I didn't say which Christmas did I? Well anyway there we go that's it from me this Sunday afternoon and yeah I'm feeling well kind of fed up pissed off and just feeling like I need to be doing something somewhere else. You get that sort of feeling you know where you'd like to go out and you'd like to run a marathon or something but you know you can't even get out your chair because you fall out. So yeah, happy seasons, holidays, whatever greetings to everybody. Have a good one.

    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.

    Intro The Work and the Shoot

    There’s wrestling on the telly, wrestling in your head, and then there’s the clusterfuck called “real life.” I should know 66 years on the mat, progressive MS in my corner, and the cosmic booker never hands me an easy storyline. But here’s the question nobody wants to answer: Is life itself just one big work? Is reality just kayfabe with worse writers and no ring ropes to hold onto?

    Wrestling as the Mirror

    Wrestling’s the purest metaphor for this simulation we call the world:

    Good guys turn heel. Heels turn hero.

    Storylines recycle, but the pain’s always real.

    The crowd thinks they know what’s happening, but only the wise spot the swerve.

    It’s all run by big suits in the back just like life.

    Sometimes, the only way to get out of bed is to shoot straight with yourself, even when everything hurts and the ref’s counting slow.

    Reality Is the Work

    If you’ve survived chronic illness, lost friends, or just watched a week of British news:

    The politicians are running the angle. The media’s cutting promos. The “healers” and “preachers” are just the latest gimmick.

    We’re all being worked. The trickster’s in the booking committee, and the only thing real is the bruises you carry out of the ring. The rest? Cheap heat and reruns.

    Life Is the Real Shoot

    Now and then, someone goes off script like Bobby “The Brain” Heenan with a live mic, or Raven cutting a promo that breaks the fourth wall. That’s what I’m doing now. That’s what every soul with a voice has to do: call out the bullshit, refuse to play along when the angle gets too cheap.

    MS is the heel manager in my life. The doctors are the refs who never see the low blows. But I get up, every time, even if it’s just to cut another promo from bed. That’s the only way to stay in the match.

    The Great Unmasking

    What’s left when the lights go out and the fans go home?

    The anti-heroes, the tricksters, the weirdos, the kittens at ringside.

    The truth that everyone gets worked, but the real legends are the ones who know it and laugh anyway.

    Life’s a work. Wrestling’s real. The only kayfabe left is pretending you don’t know the difference.

    Warlock Dark’s Final Bell

    To everyone out there suffering, fighting, or laughing through the pain welcome to the real main event.

    Pick up the mic. Call out the frauds. Suplex your demons. And remember: The only ones who lose are the ones who never get back up.

    And if you see Sting in the rafters, give him a nod. He knows the score.

    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

  • 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.

    As I sit in a shitty little car park waiting for Albertine to get her tooth attacked by a dentist with a drill fetish, I’m watching the world walk past like nothing’s wrong.

    We’ve dragged ourselves over 20 miles of crap roads and potholes that could swallow small cars, just so someone in a white coat can decide whether her tooth lives, dies, or crumbles like the rest of us. She’s in there having a deep root filling. I’m out here having a deep existential crisis. Fair swap.

    Through the window, I see people strolling past. All shapes, all sizes, all moving. Feet actually working, legs co-operating, bodies that just… do what they’re told. They probably woke up, stood up, and walked out the door without even noticing what a bloody miracle that is.

    And yeah, I’m jealous. Not in a bitter, “I hope you trip” way. More in a “I remember that life and it’s gone now” way.

    There was a time when cold wind on my face and cold feet on the pavement were just normal, not fond memories. Now I’m strapped into a wheelchair like a budget Bond villain who never made it to the main script.

    The thing about the chair is this: people stop seeing you and start seeing “problem”. They talk round you. They avoid eye contact. They change tone. You don’t exist as a person anymore; you’re a walking (well, rolling) reminder that bodies fail and futures shrink. People don’t like that. It scares them.

    For years I thought it was me. My weirdness. My deep dives. My honesty. Then I realised it wasn’t that at all. It was the disability. It was the diagnosis. It was the fact I no longer fit the easy narrative.

    Once people hear “multiple sclerosis” or “chronic illness”, you can almost hear the plug being pulled. Some vanish quietly. Some ghost you. Some suddenly “get busy”. You go from “mate” to “emotional admin” in a heartbeat.

    Over the past couple of years, I’ve lost a lot of friends. Some to death the real full-stop kind. Others just drifted off the radar because illness made me inconvenient. The funny, deep, eccentric bloke is apparently less fun once he can’t climb stairs or go out at short notice. Who knew?

    I don’t have any mates I can just WhatsApp or ring now. The ones who “got” my madness, my weird wiring, my dark humour and deep rabbit holes: dead, gone, or missing in action. It’s a strange kind of grief not just for people, but for versions of yourself that only ever existed with them.

    And yes, it’s lonely. Not “no one’s in the room” lonely. It’s the kind of lonely where you start to wonder: is it me? Am I that hard to love? Am I that awkward? Or is the world just allergic to discomfort?

    Some days I think back over my medical history the missed things, the gaslighting, the “it’s all in your head”, the “you’re fine really” conversations and I could scream. I’ve changed hospitals now because I got sick of being treated like a difficult file in a broken system.

    I ask myself: if I hadn’t moved around so much, would they have found all this sooner? Would I have had less damage? Less suffering?

    Honestly? I doubt it. I think some of us are born with the seeds of chronic illness lurking quietly in the background. It sits there, creeping under the surface, like fungus under wet wallpaper. And then one day congratulations your nervous system collapses and your life becomes an ongoing science experiment.

    What I miss most isn’t “being healthy”. It’s the simple things:

    Going to the toilet without planning it like a military operation.

    Walking up and down stairs without feeling like you’ve been tased.

    Just sleeping. Properly.

    Running.

    Feeling your own body and trusting it not to betray you in front of everyone.

    I look back at all the accidents, the falls, the weird episodes all the stuff that made no sense for decades and now it does. And the anger is… real. Because so much of my suffering didn’t need to happen. It could have been caught earlier. It could have been managed better. It could have been believed.

    Should I have shouted louder? Fought harder? Been more aggressive? Was this my fault for not being a bigger bastard sooner? I genuinely don’t know.

    So yeah, let me ask you this, if you’re reading:

    Do you feel isolated and alone because of your illness? Have people quietly vanished from your life once it got “too real”? Do you feel like your diagnosis made you socially radioactive?

    Because that’s what it feels like here. We’re all human. We all hurt. We all bleed. But some of us are expected to do it quietly, out of the way, so we don’t upset the healthy.

    Is it a test? A lesson? Karma? Cosmic admin error? What exactly are we supposed to be learning from this?

    As I’m sat here, the sun’s trying to shine like it’s in denial. My body feels wrong: neck in a constant state of “what fresh hell is this”, head buzzing like badly wired electrics, eyes not quite synced to reality. And yet, I still want to do things. I still want to live, create, move, speak.

    And that’s the sick joke: the mind still wants to run marathons while the body struggles to survive a trip to the toilet.

    I’ve lost good friends over the years — the ones who truly understood me. Now, I have Albertine, my kids, my grandkids. Everyone else has basically evaporated. My brothers, my sisters, extended family… gone.

    Does it mean I’m a bad person? I don’t think so. Does it mean I’m simple, or awkward, or too much? Maybe to them.

    I know I’m strange. Dynamic. Eccentric. I think differently. I question things. I look into the abyss and then start mapping it. That’s just how I’m wired.

    People call me “Marmite”. Fair enough. Some love me. Some can’t stand me. I tell the truth. I don’t do small talk. I don’t do sugarcoating. That tends to thin the crowd pretty quickly.

    When I had my “glitch” that moment where things really went sideways all I saw was darkness. No light at the end of the tunnel. No spiritual fireworks. Just… nothingness. The void is not romantic. It’s just empty.

    And here’s the real kicker: looking into the void doesn’t help much if you’ve got no one to talk about it with.

    Artificial intelligence can chat. It can reflect language back and be useful in its own way. But AI doesn’t know what it feels like to lie awake at 3am wondering if your heart’s going to stop. It doesn’t know what it’s like to realise your nervous system has been malfunctioning since childhood and everyone missed it. It doesn’t know what it’s like to be trapped in a body that keeps glitching while the world expects you to carry on as normal.

    That’s why I’m going to start a podcast.

    Not because I think I’m some guru, but because I’m sick to death of people like us being invisible.

    I’m getting a microphone. I’ll set up the account. I’ll get it on Spotify. And I’m going to talk voice, not just text. I want to interview others with chronic illness and disability. I want to hear different stories, perspectives, battles. I want people to know what we live through every day.

    We need more voices saying:

    This is hard. This is unfair. This is exhausting. But we’re still here.

    Sometimes, a kind word is the difference between someone hanging on and someone giving up. A hug can do more for the soul than any prescription.

    When I’m at my worst when I feel like I might actually be leaving this planet soon I curl up with my wife. That’s my heaven. Not golden gates. Not angels. Just me and her, breathing together. In that moment, no matter how bad I feel, I am at peace.

    In two weeks, I retire. Not because I’m ready. Because my body has decided to hand in its notice. I can’t even really afford the basics, like the electric bill, but here we are. Everything’s gone up except support for the people who need it.

    So if you’re out there, struggling, broke, exhausted, in pain, staring at a ceiling wondering what the point is:

    I see you.

    If anything I’ve said here resonates, drop me a line. I’m short of friends but not short of words.

    Sending peace, healing, love and light — No matter who or what you are. Human, alien, ultra-terrestrial, glitch in the matrix, or just another broken soul in a waiting room.

    So saith Warlock Dark

    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.

    There are days with MS… and then there are those days the days where your entire nervous system decides to re-enact a flea circus on a hot tin roof.

    So let me paint the scene for you:

    I Am a Kitten. A Flea-Infested Kitten.

    Not a majestic panther. Not a sleek predator. No. A tiny, confused goblin-cat with an arse like a bonfire and fleas having a rave on my spine.

    I’m sprinting around the imaginary room crashing into furniture, tripping over nothing, having a full cosmic meltdown because the fleas/MS won’t stop chewing on every nerve ending like they’ve paid for an all-you-can-eat buffet.

    Lights flickering. Shadows being weird. Brain fog thick enough to butter toast with. Hallucinations just to keep things spicy.

    Everything MS can throw at me it throws all at once.

    And there I am, this poor invisible kitten of doom, doing laps like I’m possessed by 15 demons and a Red Bull sponsorship. Things fall off shelves. Air becomes lava. Reality breaks down like a cheap knock-off mirror in a funfair.

    MS as Fleas

    Imagine your entire body itching in places that don’t exist. Imagine the fleas having meetings about unionising. Imagine scratching your own soul because everything feels wrong.

    That’s MS. Tiny bastard parasites gnawing at the wires of your meat suit.

    The Choice

    So here’s the question:

    Would I rather be a flea-infested kitten with an itchy bum? or Would I rather be a 66-year-old strapped to a power chair with MS chewing on my circuits?

    Answer?

    I’ll take the MS and the grumpy realism, thanks. At least I don’t have to lick my own arse to feel clean.

    Fleas? No chance. I’ve been bitten enough by life as it is.

    Besides a kitten with fleas is chaos. A man with MS in a power chair? That’s controlled chaos. A battle-hardened wizard rolling through hell’s hallway giving death stares to anyone who gets in the way.

    Moral of the Story

    MS is the fleas. You’re the kitten. Some days you sprint. Some days you hide. Some days you crash into the coffee table and take the lamp with you.

    But you’re still here. Scratching. Surviving. Snarling. And somehow laughing at it all.

    Because the alternative? Nah.

    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