Multiple sclerosis is My Living Hell

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All posts tagged Linux mint by Multiple sclerosis is My Living Hell
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    ⚠️ 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. non AI content

    hello fellow Humanoids

    So we're nearly at the weekend and it's Friday morning and it's absolutely tipping down with rain here. The skies have opened up. It's very, very dark. I got some amazingly great news yesterday. Yes, my power chair is being delivered next Wednesday hopefully, and also a spare manual chair as well. So that is amazing awesome news indeed. Well worth waiting for. They were really helpful at the NHS wheelchair service where we are. I must say they really put themselves out and really helped me. I know it took quite a while but then again you see bureaucracy and what with one thing and another. But still we get there in the end, that's the main thing.

    But the three-wheel trolley of death, well we own two of them, are still in the garage. And yes, we will be putting them in the back of D1, and we're going to attempt to ride both of them over a bridge. And this bridge is one of these big car bridges with pedestrian walkways. takes about 20 minutes to go over. So we're hoping that the wind will not be too bad and it will be a warmer day. Yes, I'm so looking forward to taking my power chair out as well. But I'm even looking forward to taking out my three-wheel trolley of death. Yes, I'm hoping that this autonomic dysfunction gets sorted out soon.

    I am hoping personally now that people are in the know about what's going on, that things will move forward a little bit more faster, a little bit quicker, you know, not being left in a queue and forgotten about for 5 years. When the people realise that you've been lost in the system for a quite considerable time, they are very apologetic, they are very nice people. I don't blame the people, I just blame the system and I think their system needs to have some maybe updating and maybe people who know what they're doing running it. I am a great believer that AI will be a massive help to the general practice or general practitioner as putting your Issues to the AI. The AI can help sort things out and make sense of things before it gets to the doctor. I have used AI and it has helped me greatly and I'm an advocate for AI in general practice. As I feel, AI is a very good triage agent. As every time i have anything to do with the doctors nurses or any health care people i consult my a i first. And i get the relevant questions that i need to ask. And yes it does help me and i do have white coat syndrome and that has helped me immensely asking the right questions and no when i'm being gas lit so yes medical a i has helped multiple sclerosis suffer me 110%.

    Yes, here goes the saga of Linux as well, as you have known for the past load of months. During my brain fogs and my general dysfunctions, I have been mucking around with Linux and various Linux distros. And I would say I've used over 10 different Linux distros. And the first one I used was Linux Mint. And since then, I have used others, but I have gone back to Linux Mint. In fact, I am now using Linux Mint instead of Windows, as I find it amazingly fast for what I need. And the software is all open source and free.

    So yeah, I am really happy now I have changed. But then again, it's a new learning curve for me, which I am really enjoying. I'm enjoying the fact that it is stretching my brain till it hurts. I still remember using Susie Linux back in the 80s and that was mind blowing then when I used the distro from a DVD or CD as was then back in the day. So, now I find myself strangely Linux boyman or whatever you want to call me. I feel it is a better system and it will go on most laptops or even mobile phones now.

    There is a version of Linux for the mobile phone. Yes, I really do think it is time people look seriously into Linux as Linux is just as good if not better than Windows 11 allegidly and more secure and people really give a damn about Linux. They really do care and there is lots of help out there. So yeah, give Linux a go even if it is just on a pen drive and you are doing the live version on the pen drive. Go for it because it is just so worth it.

    So this week is ending on a better note than last week. Yes, my autonomic dysfunction has got slightly more stable and everything is starting to come together. I'm still in intense pain in the mornings in my bowels, but that's life I expect that. The tinnitus has, well, not really quieted down. It's been a real pain in the arse. And no matter who or what I play seems to drown it out, I've tried absolutely everything, and nothing seems to work at the moment. I think stress makes the tinnitus worse, but there we go. I do try to live a stress-free life the best I can.

    As for the traped nerve in my shoulder neck, that seems now to be getting less and less . The pain was intense and I had four nights of no sleep whatsoever. But by the time I got round to get it seen to, I suppose I'd gone through such pain that The painkillers really never took any effect that I took. I sort of just tough my way through it with a lot of groaning and moaning and just lying on the bed and trying to take my mind off the pain. And I did a lot of thinking and I did a lot of existential thinking as well. and decided that I was going to put exactly what I think on here. And I was going to probably talk a lot about my past as well as past as they say does affect the future.

    So the weekend is looming and what excitement it won't bring for me and albertine.... yes nothing much will be happening here well nothing much does happen we don't get many visitors here ... I often wonder if any of my brothers or sisters or any of my family would ever bother to dain or bother to get in contact with me, the black sheep of the family. I would always give them the warmest of welcomes, and I would never be a horrible nasty person toward them. But I suppose such is life, and they walk there path, and I walk mine.

    I have been looking to try and find a paranormal group or a person who does research on things like orbs and ultra-terrestrials and time slips and things like that. But I have had no luck whatsoever. I have sent many emails to many groups and to many people with a lot of the things that have happened to me. And I have had no reply whatsoever and I begin to wonder why. So yes, I would like to speak to somebody who's been through paranormal experiences, maybe with things that are from another dimension, maybe a hybrid alien, maybe, you know, ghosts, anything like that, any sort of sensible discussion would be really welcomed. I didn't realize that I personally, my belief is that of gnosis. And yes, I was surprised as anything, but I was told that I have been living a Gnostic or Gnosis life and I didn't realize it and then I suddenly realized and it absolutely blew my mind. So I'm a Gnostic Wiccan, I believe is the title, what they call me now. But I also realise I have lots of liminal experiences. Some of them cannot be explained, but some of them can. And I always welcome discussion about what is going on with me, as I really do want to know the truth. If all of this what I'm going through and I've been experiencing for all these years is to do with my MS, then, fair enough, but I have enough evidence to prove that it's not. So, where do I go from here? Because the people I contact to try and discuss these things just don't want to know. What do I do? Where do I go? That's why I'm doing this blog because I'm trying to ask questions and trying to get answers, not from an artificial intelligence, but from real people.

    At this moment in time my head seems to be in the 70s and 1980s, remembering all the music, remembering just how it used to be. The good old, bad old days of the 1900s. I must say for me personally, the 70s and the 80s were a real shitty time to grow up. Because when you have an illness that you don't realise you've got and it's progressing slowly and it causes you issues all the way up and through your teenage years, my God it takes a toll. All those times I remember sitting in a chair when I couldn't feel my whole left hand side and that my arms and the hands and feet had pins and needles and I had bad neuralgia. This was when I was eight, nine and ten years of age. The doctors just seemed to think it was growing pains, but I know different now.

    The worst thing of all of this is that I was adopted in the 1950s and the people who adopted me were to say the least not fit to be parents, even though they were so-called pillars of society. To be honest I suffered mental and physical cruelty for the first 14 years of my life. But then again, that's another log post, I think.

    So yeah, as if having progressive multiple sclerosis wasn't bad enough, I suffer with adoption issues. Well, not really. I suppose the trauma PTSD of my adoption has been worked out and gone through. But my God, my life was a living hell. And my multiple sclerosis now makes my life a living hell as well. But such is life. It is totally amazing how illness can change your life without you even realizing it. And to be honest with you, I knew there was something wrong with me from an early age. And I was only vindicated by my first MRI and lumbar puncture. Yes, they tried to gaslite me for quite a few years to what was wrong with me. And well, I had very badly Gillum Barry, according to them, which I believe was an MS attack full-blown because it had me in hospital for well over a week. They said they had found something strange in my lumber puncture, and they did not know what it, what of course they knew what it was. They just didn't want to tell me what was wrong with me, and then I suffered mental health and white coat syndrome for year upon year as they gaslit me and didn't tell me what was going on with me.

    So, yeah, now I have changed. And I advocate for myself. And I don't listen to what the doctors say. I read medical books. I use medical AI. I ask people questions. I ask the raw, real truth. Yes, I know it hurts, but it has to be asked. And people have to know the truth about how MS will suffer and how it will make them suffer and what it will do to them. and try and find ways to help relieve all the symptoms of multiple sclerosis. And also try to inform people what harm multiple sclerosis can do to the brain and to the body, to the mental health, in fact, to the whole person.

    People are really not getting what a destructive, destroying illness this truly is. It is pure fucking Armageddon. And I live And people like me... live this Armageddon every day. 24 hours a day, 7 days a week, 365 days a year, without any break, just getting worse. Yes, just getting worse, knowing that one day, that will be it, I will be no more. I will just be a body in a crematorium being burnt. And that's the plain sad truth of the matter. I know my destiny is, well, death, but I don't mind. I don't have a problem with that. I just don't want to suffer before. That's my points, you know? I want to have my dignity. I want to be me until my last breath. Yes, I don't want to be put in a home to just rot. I want to try and be me until then and I just hope that I can stay sane enough to be who I am. That's why I do this blog, that's why it's raw, and I am unapologetic about its rawness. Anyhow, that's it from me.

    Wishing everyone out there. Peace, healing, love and light, no matter who or what you are.

    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
    π’€­π’Š©π’†³ α›žαš±αš¨αš·α›ŸαšΎ α›αš±αš¨αšΎα›‹αš²αšΊαš±α›α›–α›ž ✦ αšΉαš¨α›αš²αšΊα›–αš± π’€Έπ’€­ αš’αšΎα›’α›Ÿαš’αšΎα›ž
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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.

    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 (β€œbrain 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 β€” 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 β†’ deconditioning of the cardiovascular system Chronic inflammation β†’ increased long-term cardiovascular risk Severe fatigue β†’ less activity β†’ compounding strain on the heart So while doctors sometimes treat heart issues as β€œseparate,” 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
    π’€­π’Š©π’†³ α›žαš±αš¨αš·α›ŸαšΎ α›αš±αš¨αšΎα›‹αš²αšΊαš±α›α›–α›ž ✦ αšΉαš¨α›αš²αšΊα›–αš± π’€Έπ’€­ αš’αšΎα›’α›Ÿαš’αšΎα›ž
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