Living with Progressive MS: Pain, Autonomic Chaos, Linux, AI & the Search for Truth

⚠️ 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.)

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