Multiple sclerosis is My Living Hell

autonomic dysfunction

All posts tagged autonomic dysfunction 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. no AI written content Good morning, good afternoon. Fellow humanoids and nhi out there.Storm clouds gather over Southwest England while daily life becomes a battle against malfunctioning pharmacy machines, failing vehicles, autonomic dysfunction and chronic illness. Alongside these earthly struggles comes reflection on UFO/UAP disclosure, paranormal research failures and the search for answers in a world growing increasingly strange.

    head storms and rain clouds

    Looking out the window at the moment there are nothing but miles and miles of dark clouds surrounding us. Absolutely everywhere! And well it hasn't rained but it's looking like it's going to blow a massive rainstorm down here in the southwest of England at some point today. Hopefully it's going to pass over so I can go out on the three-wheeled trolley of death as I need to go to the chemists. Yes, going to the chemists is like, well, a trip in itself.

    chemists machine of much hope

    I suppose I will be dealing with the machine at the chemists, the machine of death. It does not like me, no. You can guarantee I'm going to put my code in and it's going to break down and make some very strange weird stupid noises. As it is when I go in the chemists, they look at me strangely, as my prescription always seems to break their machine. Yes, it is a thankless task. Well, you can go in it before the chemists opens as it has an outside wall dispenser, and that machine is even worse. It has caused me much problems over the past few years, I can tell you, and has caused me many moments of swearing as well. Yes, when your medication gets stuck and you're in desperate need. Yes, it's always the same. You cannot beat the human touch and over the counter service when they have enough staff on. Yet that is another thing. As chemists these days, the more automated they become, the worse they get. Just employ more staff. It's that simple. Then you won't have queues. I've lost count how many other people's prescriptions I've also had as well mixed in with mine. Must be three or four over the past year alone. But we live in hope that things will get better and yes, things will be a happier time when we arrive there, that's if it's not raining of course on the other hand.

    poor rusty one

    Well, the sad news is the Van Rusty one is off the road. It looks as though we have a problem with a sensor. And that makes the vehicle run lumpy, I think it's the air management system sensor somewhere. And that really does piss me off, because we only just had a new starter motor fixed to it. And when it goes for its MOT, I think I'm looking at a bill of well over 500 to 600 to 700 pounds. But such is life when you live down here, the salt air really does tear through and make the old vehicle get very rusty.

    poor d1

    And then of course there is our other van, D1. This is the specially wheelchair adapted van and we have had to pay out loads of money on this as we've had two injectors go in the past year which was very unfortunate for us but there we go. This is my wheelchair transport vehicle that I bought over ten years ago. still going quite well but there we go. We have had to put that on trickle charge as when we needed to go to the vet the other day to get the cats there Injections so they can go into boarding kennels or even go outside. So it seems We found out that D1 had a, well, no battery. Yes, the battery was as flat as a pancake, so that's now on trickle charge. And also we have a flat tire as well. How exciting this is. This month is going to be spend spend spend ha ha

    NHI ufos and uaps

    I have been looking in the newspapers and I have been looking at a few stories and I see that UFO UAP disclosure is on the cards. Personally I think it is a big nothing burger as the Comet 3I Atlas also was, I know I never went into the fifth dimension or spiritually elevated or went into another place as it went past or gained any spiritual energy, or even saw anything strange in the skies. For me, sitting in my power chair, that's where I was sat. Nothing much happened, to be honest, and I think that's what's going to happen with UFO/UAP disclosure. I think we'll get a few films, a few reports, but nothing really too alarming to be fair. As I believe this is all a Project Blue Beam pSyop. Well, that's what everybody's saying everywhere, so that's what they say, and well, you never know what's going on these days, do you?

    research issues and failures

    I have tried to get in touch with certain researchers in the UAP UFO paranormal field to help me with my quest. But as of this day, it has, well, completely failed, I believe. I've written to several groups and researchers in the UK, and I've had no replies whatsoever. So I'm not expecting anything, so there we go. What do I do when the researchers won't even get back to you? You know, wow, that's unreal. But I have one ace up my sleeve, that is the old group from the southwest in the 80s and 90s, southwestern alien, abduction, strange phenomenon unit. and the founder Sam Potage. who I have spoken to at great length at what has happened to me. And he is very surprised and he tells me to carry on and someone will pick it up. He is of course retired and very elderly now. But he has put me on the right path of where I need to be. And I thank him greatly for that, as he hasn't done any research or anything apparently since the 2000s.

    Autonomic dysfunction woes.

    Well, the whole weekend was marred with my autonomic dysfunction. Yes, it was quite bad. If you have autonomic dysfunction and you have a histamine intolerance and multiple sclerosis progressive, you'll know what I'm on about or if you've just got a histamine intolerance. Yeah. I've been on the edge or weekend. The nerves in my stomach and all the way through all the way up are bad. It feels like I'm being completely strangled. It's unreal and my breathing is acting all kind of crazy. I am trying to work out what I must have eaten that has caused this trigger event. When my autonomic gets triggered, it goes from 0 to 100 miles an hour fucking quickly. And I have to start taking antihistamine tablets or LaRazaPan because they're the only two things that work at the moment because I'm still waiting to see a neurosurgeon or neurologist, whatever they call him, or an immunologist. As you recently found out on this blog, I have no neurologist. No, I haven't had one for over five years, my doctor has said, which has caused quite an outrage I must say. But there we go. Nobody ever fucking listens to me in what I say and look where we are at the moment. Yes, we're or as my father would say, God bless him, we're in the cactus.

    Still wishing anyone who reads this blog piece, healing love and light. No matter who, what or where 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. no AI written content

    Remember waking up to crackling radios and rock β€˜n’ roll drifting through the air… before life became complicated?

    Well, good morning, good afternoon, good evening, wherever you are, fellow humanoids and NHIs. Yes, it's the weekend and my weekend starts here. Do you remember those words back on the radio back in the 60s and 70s if you're that old? I do. I used to remember the weekends when I used to wake up and you used to hear the rock and roll music blaring out of the old transistor radio. Yes, listening to Tony Blackburn and radio one back in the 60s and 70s. What a lovely sunny, sunny morning you used to wake up, listening to Ed Stu-pot and his weird weird stuff. What absolute memories of a blast from the past. I know it may sound very cheesy now, but the music back then was essentially amazing. Some of the bands they had then still stand the test of time, even on these times that we live in now. And more so, I often think.

    fun and motorcycles seem to go together

    So when I was really, really young, I used to have a dirt bike and I used to take it up to the old railway track. And I suppose I would only have been 9, 11. When we used to do this myself and a group of friends and we used to spend the weekend just having fun. Without any care in the world whatsoever. It was an old gellira 80 and wow we used to do insane things riding up steep banks making jumps jumping over people doing all the sorts of things these days that would oh my god yes you'd need a safety man there and all sorts of safety equipment because it definitely wasn't health and safety time then my word no somebody could have really got hurt But it's only when you look back that you sadly realize these things, because when you're young you think you're completely indestructible. So most weekends we would take our old bikes, wheel them up to the old railway or the farmers field and we would spend the morning or an afternoon scrambling and riding around. Nobody really bothered us, nobody really cared. And we just had loads and loads of fun. On a Saturday and a Sunday afternoon, bothering no one. But that was the late 60s, early 1970s. Boy, how things have now changed.

    Chemist's machine from hell.

    Well amazing news on the chemist's machine from hell dispensing automation units. It's not going to have a problem with any of my prescriptions anymore. Isn't that fantastic? I went into the chemists and I've now managed to get it all sorted out. Oh wow. Yeah, that saves me many frustrating visits to the chemist. Trying to put a code into a machine that did not like me, that hated me, that I am sure when it saw me coming thought ah, we will get him, he will not get his medication. So I'm looking forward to my next prescription. Oh yes indeed. When I get my medication I will be hoping that it will go as smooth as smooth can be. But we will see. The thing is I don't like pressing buttons unless I've got gloves on because you never know what you can catch from buttons that you press. Oh indeed always remember take a pair of rubber or plastic gloves with you when you have to open doors and use petrol pumps etc because it's amazing where bugs and lurgies lay waiting to pounce Giving you a severe diarrhea dilemma or even a vomit virus. and a lot of people don't wash their hands and when they go to use a petrol pump or a door handle well there we go. So there we go take care when you're out there and remember wash your hands thoroughly wherever you go. I know I do.

    Things I take with me on a trip.

    I suppose the most important thing for me is to make sure I have everything on a trip. So even if it's to the local doctors or the local shop or even far away, I always make sure I have a bag packed in case of emergency because you never know when you're going to need things.

    I always make sure that on my phone I have my ice numbers, that's in case of emergency numbers that people can phone. Well, in case of an emergency. And of course there's various articles of spare clothing and various medications. Always remembering to keep hydrated and to take a bottle of water with you as well. Yes. I can carry medical cannabis with me, funnily enough. So I have to keep my prescription with me when I carry it. So that's very weird. It's a very strange feeling when you're going in your power chair around a shopping center. And you've got a pot of cannabis on you and you're going past a policeman for instance. You sort of stop and you're sort of there thinking, "My God!" You know, that really does give me a head trip. But me personally, I have found that police very helpful when I have had dealings with them. In fact, they've always been very helpful. But that's on the occasions I've needed them. But I find them quite cheerful overall. And I suppose if you treat them with respect, they'll treat you with respect. And that's the way I think we should always pay respect to doctors, nurses, firemen, ambulancemen, and all the people out there who put their lives at risk for us.

    Yes, we really should say a big thank you to all of them, no matter who they are. Even if it's down to the loneliest cleaner, we should say a massive big thank you. And I suppose that goes for most people in the community in the society we live in. You know, if we're all to be more polite and happier and smile towards each other, things might slowly change. But that's just me thinking a little bit outside of the box, remembering how things used to be in the 1960s and 1970s, and seeing things change so drastically. It's heartbreaking seeing some of those changes that have indirectly incurred on people's lives. It is truly, truly sad.

    The weekend and AI

    I was hoping to actually go somewhere this weekend, but there is nothing going on, nothing happening around here. So I guess I'm stuck inside again this weekend. I am still working on the AI project and I'm running an AI from my own computer now and not using the main server. I'm using my PC instead. I must say the answers that I am getting is a lot better than we would have got from the filtered AI on the usual AI platforms. Still, looking out the window it is very hot this morning, and my word, I think we're in for a scorching weekend. Saturday morning, looking out the window, oh my god, the weather is blowing me away. I think I'm going to have to get my power chair out and go for a ride this afternoon. Yes, indeed, it will be fun. But then again I might not. Just depends on how things go. My autonomic dysfunction is giving me a bad underlying feeling today and yeah that's not very pleasant. Tinnitus has calmed down quite considerably today which is itself a miracle. So I suggest if you're in a sunny place and get lots of sunshine and vitamin D, hydrate and go out and get warm and feel the warm sunshine rays of healing on your skin.

    Still sending everyone who reads this blog, peace, healing, love and light, to whomever and whatever you are and wherever you are from.

    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. no AI written content

    This is my reality.

    So good morning fellow humanoids and E-T-I. So yes, this morning I had a massive autonomic dysfunction. Attack. It wasn't very pleasant, it was a near ambulance calling situation again this morning. But there we go. What do I do? What do I do in this situation I ask myself? Do I phone for the ambulance, only to be taken to hospital and prodded and poked, and then not understanding what the fuck's going on because nobody will listen to what's actually going on with me?

    Gaslighting

    They will put it down to my heart like they always do and then they will try and frighten me and then a few weeks later I will go back to them and say well you've got it wrong again haven't you especially when the ECG came back and proved them wrong. And that it was the autonomic dysfunction in the first place that caused my heart irregularities that I am suffering with, yet I'm not seeing a heart specialist, I'm not seeing an immunologist and I'm not seeing a neurologist, I've been left at the back of the list to rot in fucking hell! ....

    It actually comes to something when you have to research and do self-diagnostics yourself to get to the bottom of what is actually wrong with you and why doctors cannot. It really does piss me off. It seems when you're in a power chair and you have progressive multiple sclerosis, you're treated like a fucking vegetable. And that, oh, they'd rather talk to the person with you who is standing next to the wheelchair than the actual person in the wheelchair and take what they have to say seriously and listen, It really is disgusting.

    When the Body Shuts Down

    So, as I sit here and I'm going through the end of this, it just feels awful. I feel awful. I hate these attacks when the mind just totally freaks out and the body just goes. And you know what's coming next? It's those frightening experiences that one can go through when your body totally shuts Down and then of course the inevitable will you come back from that. Luckily I have come back three times now from 3 total shutdowns, which is quite surprising.

    There were no ambulances and doctors, no. It was just me, my wife and a medical AI. If it had been left to 111, they took over a day to get back to me. That really did help, didn't it? The ambulance took nearly an hour and, well, I would have been dead and gone by then. When they did the ECG, they said I had to go into hospital in some urgency. Due to I was going to be suffering a massive stroke due to the ECG pointing out irregularities in my ECG.

    Autonomic dysfunction, flare up

    Now, knowing that what I was going through was an autonomic dysfunction, flare up, shut down, attack thing, I knew what was going to happen and I knew that blood clotting, anti-blood clotting, injections, etc, etc, etc, all that stuff's not going to help me in this situation. So I decided not to go into hospital with this in November. And ever since then I have been fighting tooth and nail with the MS service and well with no luck to be honest it seems I'm going round in circles and I'm getting this letter together for pals because I'm fed up.

    I've been going round and round and round in circles for over ten years and I'm getting sick of the fucking gaslighting that's going on with everything. I just want to get sorted out and have peace of mind for once. Take away all that stress and all that horribleness that I go through every day. I just want to know what's going on with me. I need some help and nobody wants to fucking help me. It's just not fair.

    Ignored by the System

    I know that I'm not the only one out there that is going through this, as there are many with chronic illnesses that go through a living hell regularly every day, every minute of the day, and they suffer due to people's incompetence or just general lack of knowledge. I know the NHS does its best with what it has, and I know the staff do their best, but the red tape and bureaucracy is a joke. It has now got to that point where if I can help it, I do not go to the doctors whatsoever. I only go in dire emergencies because to be honest with you, I really have an aversion to go into doctors and hospitals now. I don't trust any of them and I don't like going to see them. I'm caught between the devil and the deep blue sea here and it's just one hell of a fucking frightening experience for me. It's been plaguing my mental health for many years. And yes, I have white coat syndrome as well. I'm sick and tired of doctors and neurologists trying to frighten me into making decisions that I truly do not want to make.

    Life changes

    So like many of you out there, I stand alone. Well, not alone I have Albertine, my wife and some of my family who stand with me. But others don't because they don't take the time out to try and understand what I'm going through. I'm not the same person I was 40, 50 years ago. I've changed beyond any recognition. Nobody would recognize me not even from 20 years ago. That's how much I've changed. My personality, the inner me, has completely changed. People do not understand the changes I have gone through and that I'm going through. It's fucking hard.

    When will people try to understand that when you're going through an illness like MS that affects your brain, that affects all the signals, the cognitive angles, the brain fogs, fucking hell. How the fuck am I still able to do what I'm even doing? I suppose that's only through learned things that I've done. Man, it's a frightening life, but fuck. Yeah, I'm living it and I'm living on the edge 24/7. And to say it's not frightening would be an understatement. So yeah, I'm living on the edge and I'm speaking from raw experience. I'm not an AI bot or some AI chat thing trying to get figures. I'm just trying to put over what it's like suffering with a chronic illness 24/7.

    mental health issues

    When MS starts fucking with your head and starts playing games in your head Then you'll understand what it's like when you freak out Yes MS can make you freak out and make you lose your mind It can make you on the edge people don't understand the mental stress and what we have to go through My god if people truly knew and understood why I have to go through Then they might go a long way to understand why I am like I am and who I am and what I am Yes, I am eccentric.

    I admit that I also have Gnostic views Yes, I also believe this earth is a simulation Yes, well, so what I'm eccentric I'm allowed to have those views But because I hold some weird views people won't speak to me just because of that but being in a power chair as well My god you're left a rot in a fucking hole of puke somewhere in a corner It's just not fair when can we and when will we be treated like normal members of society without having to hide in dark corners

    !!I just wish people would fucking listen to me for a change.!!

    Sending everyone who reads this blog, peace, healing, love and light no matter whom, what or whoever 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. no AI written content

    So, a very good morning to you fellow humanoids and sufferers out there with chronic illness. Yes, it's been quite a day indeed. I was up early in the usual pain through the autonomic dysfunction and well, I've had enough. I completely had enough. It's all very well having progressive MS, but through no fault of my own, this autonomic dysfunction has caused me great issues indeed.

    Back in the 1980s I had an injection for hay fever and it appears that many people who had that same injection have now started to experience autonomic dysfunction at some levels so they stop that injection because it caused problems. Now I'm trying to make people understand that it is not always multiple sclerosis that causes issues and that I have autonomic dysfunction caused by histamine reactions in the body. My body cannot stand histamines whatsoever. It cannot even stand food that hasn't any histamines that causes a histamine reaction in the body. So I have to be so careful with everything I eat and summer is a nightmare. Plants, hay-fever- yes, you get the picture. It's a living hell for me.

    So, as you know in November the ambulance was called and I refused to go into hospital. They said I was going to have a stroke due to something on the ECG being weird, and I told them I know what the issue is. It's my autonomic dysfunction and they sort of looked at me and well, they were really, really nice people and I signed a piece of paper and I said I'll have it all dealt with locally So that was back in November.

    The goblin keeps track of all of it. Every β€œwe’ll get back to you.” Every delay. Every time nothing actually happens.

    I managed to see a doctor in November or was it December? And then I asked to see a neurologist about everything that was going on. I asked the MS nurse, I asked the doctor, and well, the MS nurse got back to me and said that the neurologist had said who I haven't seen or heard of in five years said to the MS nurse, you have to see an immunologist. It's got nothing to do with neurology. Yes, so I'm in this circle now where the neurology team don't want to know. and to try and get an appointment to see a immunologist is a joke. So I'm thinking, will I ever get to see one? I don't think I will. Unfortunately, my mind has turned into goblin brain. And as a goblin brain, that means I'm probably going to pals because I've had enough of all this bullshit. So yeah, it's been a real mind fuck of a morning.

    Neurology says β€œnot us.” MS team shrugs a bit and passes it along. Then I get told β€œyou need immunology.” Immunology? Good luck getting anywhere near them unless you can bend time and bureaucracy itself.

    I’ve had enough.

    Enough of chasing things that should already be happening. Enough of repeating myself like I don’t exist beyond the last conversation. Enough of feeling like I’ve somehow got to prove I deserve to be taken seriously.

    This is about what it feels like to get stuck in something that doesn’t move, while you’re the one dealing with the consequences.

    I refuse to get to stressed over this still.. wishing everyone peace healing love and light no matter who or whatever 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. no AI written content

    Good morning fellow humanoids, the sun is shining brightly through the window yet the clouds are looking dark and it looks like it might start raining soon. So today I'm feeling particularly bad, the autonomic dysfunction is going up a few notches it seems every day. So hopefully I hope that I don't get one of those really terrible attacks like I have been getting every now and again. That puts me into hospital.

    So, as you know, yesterday I got in contact with my doctor about getting an appointment with an immunologist. But alas, I've got to jump through hoops and hoops. And I have to wait to speak to a doctor for a month before I can even ask to see an immunologist. Now this is unbelievable. As I've been waiting to see a neurologist for over five years, and you would have thought after the last massive attack I had in November, things would have been put into motion. But alas, no, it seems as usual it's all fucked up. The thing is the MS nurse told me that the neurologist said I have to go and see a immunologist Yes, so there we go and Now I find myself in this position of why could you not have told me that in November? So now I have to wait a month to see the doctor. I then have to...

    Oh yes. Something else that's just really annoyed me as well. As today I'm feeling particularly unwell and shitty. I sent a letter or email to the MS nurse. Asking for help, but guess what? I have had an email back saying I am on holiday again till Monday, or on leave I suppose. and to get in touch with 1-1-1 if it's urgent. Well, again, I make this point. Why would I want to phone up them when I have a perfectly good MS service that is there to help me? By the time I've explained to 1111 what's wrong with me and what is going on, And then the 1111 service take absolutely hours to get back to you, don't they? Yes, so there we go. So you'll know further forward because they've got to find somebody who is a specialist in MS as well, haven't they? Or autonomic dysfunction. that could take six or seven hours I've been waiting by the telephone, as Debbie Harry would say, and no fucking way.

    I am fed up of putting myself through all of this stress. So, do you know what I'm going to do? I'm just going to do absolutely nothing. What is the point of the MS service? Because to be fair, they're not very good, are they? What's the point of the neurology? Not very good, are they? No. So, as I sit here, slowly fading away into nothingness, I question why I even bother going to the doctors at all now, because they have been no help to me whatsoever. I just sit here and I just suffer and get no help, or the only help they can offer is, 'Oh come and see me in a month's time. I don't want to have to pay Β£55 because I cannot afford it to see a private doctor.' So, yes, I'm just going to have to fucking suffer. Due to the nature of my autonomic dysfunction and all this pollen, I think I'm at the limit of my antihistamine tablets. And guess what? My autonomic dysfunction, histamine levels are going up and up and up. And we know what this means, but no one gives a bloody damn do they?

    So as far as I'm concerned, I'm going to have to go and shut myself in the bedroom, turn the light off and basically just lay there because that's all I'm going to be able to do because to be fair with anybody I'm not going to be able to function soon. That's the pure harsh reality of it all. When the sickness and diarrhea starts, that's probably when I'm going to phone for the ambulance. Because then they will be able to see what I actually go through and my attack and then I'm probably going to be an hospital when it goes off. I am half tempted to just not take any anti histamines and let everything go off end up in hospital and do things that way. I am so sorely tempted that I'm not going to do that. My God, things have got that fucking bad in my life now.
    Still, that's it for now. Wishing everybody healing and peace

    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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    ⚠️ 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

    Well, at the time of writing this, it's Wednesday evening ( its Tuesday lol ), and it's quite a pleasant evening. So a very pleasant evening, morning, afternoon, wherever, or whoever you are in the world. Hello fellow humanoids. Well, it's been quite a week for me, I can tell you that. Yes, it's already started. My new medical dramas are about to start coming to fruition. So, as you know, I've been waiting for a neurologist's appointment, an urgent neurologist's appointment since November. That still has not happened. So, I phoned up my MS nurse. Well, I tell a slight lie, I dropped her an email and she made an appointment to phone me. And she informed me that I need to see an immunologist. And I said, "Well, why couldn't you tell me that?" months ago.

    So, I'm not angry, I'm not pissed off, I'm not really that fed up. I'm just a bit miffed, to be honest with you, because I've had to use AI to manage my multiple sclerosis and my autonomic dysfunction episodes rather than my neurologist who I can never speak to, and my MS nurse when she's not on leave, sometimes. So yes, I'm in a worse situation than I was before, and on changing hospitals, that is now all on hold. It seems I am staying with my old neurologist who does not like me, who does not get along with me, and it looks like I'm going to get railroaded again. But I do not think I am going to put up with this, so I'm going to be fighting this tooth and nail, because to be honest with you, I'm getting rather fed up of all the bollocks that I'm having to put up with and to go through, just to go and see an immunologist to get my autonomic dysfunction sorted out, which it has taken them how many years to try and sort out. They've had a good, what, 10, 15 years of sticking tubes up and down my nose, going and seeing specialists and God knows what. I find out through AI what's giving me the trouble. Yes people, AI told me what the problem was, not a doctor, not a specialist, but they also agree now with what the AI is saying because of my symptoms. If only they would fucking listen to me. Why does nobody ever fucking listen? It makes me bloody angry. I am sorry for my swearing, but I feel really strongly about this.

    So, you've got multiple sclerosis and then you have all the other bits and pieces with the MS which they really don't tell you about. You're supposed to go to a group or you're supposed to go on Google and Google it. They don't sit down with you and really explain to you the living hell that you're going to be going through for the next lot of years. It don't explain to you that the condition causes other conditions to get worse and can cause conditions you would have been dormant in your body to rise up and bite you on the arse. It's like I was okay with the MS but to have severe or autonomic dysfunction as well is mind blowing. You know, they never listened to me but I shouted loud enough and they listened. But now I'm having to shout even louder to try and see an immunologist to try and get some help. Every day is a living hell for me. Every night is a living hell for me. These people do not know what I am going through.

    That is why I write this blog because I want to show that I'm not the only person that is going through this living hell. There's thousands of us with chronic illnesses out there who are suffering, who are unheard, whose voices are not heard. We are pushed to the back of the queue. We are not listened to. It really is a very sad situation in this society when people do not care for the sick, disabled and elderly in their society. I think that is a damning thing about the state of our society and the world we live in. The more I look at it, the more I see money and greed and power. That's all people are interested in. The empathy seems to have gone. It's just greedy pigs at all the troughs as usual. Well, I'm going to have to say allegedly because it probably, well, I don't know, to you. Some rambling words and thoughts going on my mind which I'm not prepared to say. lol

    So yes, I got in contact with the medical center today, Albertine sent an email for me to get them to get me an appointment with the immunologist to see if that would help things move along, according to the MS nurse, it will. So I received a phone call saying, "Oh, you've got to come into the surgery this morning for triage." And I said, "Well, it's autonomic dysfunction. Why have I got to come in? I just need to see an immunologist." And I really can't work out why I've got to go and see a doctor. When I know what's wrong with me, they know what's wrong with me. Yet I've got to go through this weird system. It's already been over four months. You would have thought I would have been seen by an immunologist or even a neuro by now. But I haven't. So it just goes to show that I'm 66, so I'm retired. That means I'm old. That's box one. I'm sick. That's box two. Oh, dear. Yeah. Don't listen to me. I'm old, sick and disabled. I'll go to the back of the queue and just sort of curl up and roll a little ball and just stay there and rot.

    But unfortunately, I'm not going to crawl into a little ball and rot. I am going balls to the wall. No, I'm just taking it slow and I'm taking it steady and I'm taking my time. And if I get seen, I get seen. And when I do get seen, I'll be able to sit there while they treat me like an idiot, as they always do. You know, when you're in a wheelchair and you've got somebody with you, they always talk to the person and not the person in the wheelchair, don't they? So yeah, I have a list of questions. I have quite a lot of evidence and yes, I will be going armed with all the evidence and yes, they cannot easily get away with all of this rubbish because in the end, they've got to see me. I mean, why can't they just take five minutes out of their day? You know, simple really, isn't it? I think in this day and age of everything being 24/7, doctors and dentists should be 24/7 as well, 365 days a year, because that's the society we have turned into. Still, I shall go and look out of the window and I will be listening to some music. And, well, just think myself lucky that My tinnitus is on low volume today.

    So, an update from the doctor situation. "Would you believe I had a phone call from a doctor's surgery this morning? And they said to me, 'Can you come in today?' to come in for a nurse for triage?' I said, 'No, I am too ill. I cannot get there.' 'Oh,' she replied. The next thing, 'Oh, I shall get you an appointment,' I thought. 'Oh great, I might get to see somebody.' 'Uh, like a phone call or something.' 'No, I now have to wait a month to see a doctor.' The only reason I got in touch with the doctors was for them to arrange an appointment for me to see an immunologist. And I now have been waiting for months. And now it looks like I am going to be having to wait more time due to people not listening and acting correctly. So yes, I'm only one more autonomic dysfunction attack away probably from something very nasty and fatal happening to me. You just cannot make this stuff up. So now I'm going to have to email the MS nurse to try and get her to get her ass into gear and also to speak to the neurologist to try and get him to do something as well because to be honest with you I don't think I can put up much longer with what is going on with me.

    So yeah, as you've guessed, it's Wednesday morning that I'm doing this and I did the earlier part of this blog on Tuesday evening, I think it was. I can't remember. I haven't been that well. So please remember, have fun out there and be safe.

    Still, anyway, that's enough of my ranting and moaning today. Still, I'd wish you all a very good week ahead and send you peace and healing, and hope that things go well for you all. Whomever or whatever you are, wherever, or whomever 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
    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 dysfunction this may be a confusing read. Some AI written content

    Well, good morning, fellow humanoids. Yes. It is a warm day, and it is slightly sunny outside. Yes, I actually got on the three wheeled trolley of death this morning, and I went to the post office. My word, it was chaos at a sedate eight miles an hour on the roads of the southwest, causing mayhem. Everybody was smiling this morning. Everybody was chatting and happy. Oh, the joys and joys of a wondrous ostara. Indeed.

    Spring has arrived, and with it comes Ostara a time of renewal, balance, and growth. But what does that really look like when you’re living with chronic illness, navigating Linux, and experimenting with offline AI? This is a real-world reflection on spirituality, resilience, and finding light in unexpected places.

    here's what the ai had to say about ostara

    Significance of Ostara Celebration of Renewal and Fertility

    Ostara symbolizes renewal, fertility, and growth. It is a time to celebrate the increasing light and the awakening of nature. Traditions often involve:

    Planting seeds and preparing gardens.
    Celebrating fertility in all forms, including creative endeavors.
    Honoring the balance between light and darkness.
    

    Deities and Symbols

    The name Ostara is derived from the Germanic goddess Eostre, associated with spring and fertility. Symbols commonly linked to this festival include:

    Eggs: Representing new life.
    Rabbits: Symbolizing fertility and abundance.
    Flowers: Such as daffodils and spring blooms.
    

    Activities and Customs Common Practices

    Egg Decorating: This custom is widely recognized and 
      often involves decorating eggs to symbolize new life.
    Bonfires: Lighting bonfires to represent the sun's return.
    Feasting: Sharing meals that include seasonal foods, such as greens and 
     root vegetables.
    

    Rituals and Ceremonies

    People may perform rituals to honor the earth, express gratitude for fertility, and invoke blessings for the growing season.

    thank you Ai bye bye bah brain fog stopted my Ostara explanation lol typical

    still, Yes, I follow the wheel of the year and the wiccan rede but thats me personally, and uh it's a great thing. But that's my own personal belief system, my own path, being as I am a Gnostic Wiccan, which is quite a mouthful. Haha. Well, anyway, today is feeling really, really positive. Strangely enough, my autonomic dysfunction has slightly muted today, and my mood has changed. Even the usual tinnitus has decided to quieten down slightly.

    And yes, on the front of Linux. Things have gone so so. I still have Linux, I'm still using it, in fact I'm doing this post on Linux. But unfortunately, it looks like I've got to have a Windows 10 or 11 PC as well to do certain things. So I'm chickened out, I do not want to do a dual boot. So I actually had a bit of luck. So I've managed to get hold of a small factor form PC, which I will be able to put Windows 10 on, and there we go. Hey ho, I should be things as normal soon, hopefully, but you never can tell things can go bonkers in my world.

    The thing was I was looking at the price of memory RAM DDR or whatever you like to call it. And apparently all the AI centres and big computer people are buying up all the RAM. So people like us can't buy it because it's all sold, and well, I'm gonna have to get some Sodims. That sounds rather rude, but being small form Sodims are around. And it will help with the AI that I'm now running that I have sort of out. So I have my own AI running on my machine, which is great, and I have several different versions of which I do not have to pay for, and I can use offline and don't have to connect to the internet to use them. So that is indeed awesome. And I'm having a great deal of success using them as well, and I recommend people go get LM Studio and have a go for themselves.

    I am managing to do a great deal of research and it is amazing how much information you can glean using the AI. I in fact have moved several strides forward with some amazing results.At the moment I am doing a lot of research on the Gnostic view of death and what comes after death, and it is interesting having the proper interpretations, so to speak, being raw and unfiltered rather than being censored or having somebody's words spouting off what they think because I want to know what I think, not what others do.

    It's been an amazing journey the last year. I have found out so much about myself and my health as well. It's amazing what a year can do for a person. I've died, I've come back, I'm just don't know who I am anymore sometimes, but hey ho, I keep on fighting, and that's my point. I've got to keep on fighting because if I don't and I give up, what's left in life but nothing. So yeah, remember, always be positive, always be happy. I know life can be depressing, and illness, chronic illness can piss you right off some days, but remember, hang on in there because guess what? It can get better, but the person that makes it better is yourself. No one else will help you, everybody else will put you down, everybody else will write you off. It's you yourself that has to go for it and really go for it. Sod what others think. That's what I say, you have to be you. You have to be the authentic true version of yourself.

    Life is a journey with many stops along the way. Anyhow, I'm on the bus of life just like everybody else. It's just that my stop's nearer the terminus than most people. Anyway, wishing everybody 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
    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 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
    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 dysfunction this may be a confusing read. non AI content

    Hello fellow Humanoids So, it is a dark Tuesday evening and yes, the confusion continues with trying to get me to see a nuro dude It seems that the communications have gone awry and then some. But then again what did I expect where I am concerned? Apparently I have not been transferred to the new hospital and I am with the old hospital.

    So I only found that out a couple of days ago. So now I am having to deal with the old hospital. So yes you can imagine how confusing everything has totally got with absolutely everything. So we have my doctor here dealing with one hospital and yes of course it's the wrong one.

    So no wonder I've been stuck somewhere since November in this weird system of things. So I have been desperately in need of seeing a neurologist since the ambulance men came out in November. And that plainly hasn't happened even when I have been begging. I have been begging and asking to see a neuro and nothing happened because of the confusion of me asking to move to a new hospital with a stronger neuro team. So, I don't blame my local doctors, I just blame the bureaucratic nightmare that is the NHS with one hospital not speaking to another hospital because their communications don't connect or some weirdness like that. Ah well, never mind.

    So, yes, my cognitive fog or brain fog is lessening at the moment, and my autonomic dysfunction is calming down slightly due to my strict dietary control. I also found out something really annoying today that the only clinic in the UK that deals with autonomic dysfunction is private and that I would have to pay. So yeah, that means I'm gonna have to suffer. Oh the fucking joys of it eh? You could not make this stuff up.

    The trapped nerve or impacted nerve in my neck shoulder is starting to cause me less grief and I am managing to now sleep. Well, that until is the kitten start screeching because yes, they've come into season again. Oh, the joys. Albertine and I are awaiting the vet's phone call so we can take both the kittens in and have them spayed or seen to whatever they do to female kittens these days. We were having a right laugh remembering when we have had cats and dogs spaded or neutered before and they've had to wear those funny like space helmets. And they're going to look really stupid walking around with their little space helmets on wobbling around the room. And I'm going to video it and I'm going to put it up so everybody can have a right laugh. Also, of course, we're going to go and get them microchip at the same time.

    So yes, I have been dealing with the medical people on their own terms as I have been using AI. And AI has had me really clued up on everything and what can and cannot be done. It's amazing how AI has helped me to come to certain conclusions and it really has helped me. So the one thing I do find helpful about AI is the medical side. It really does help, and I'm 110% down with that I can tell you because it's certainly helped me.

    So yeah, I may bang on about AI sanitizing everything that I personally say changes my swearing changes what I say, what I mean, etc. To be more understanding for people. I don't like that. I prefer my own raw brain fog. I've got MS and this is how it looks people,, Because you're going to have to deal with it. Yes, I can change conversation. Mid conversation. I can change the subject of the conversation like it's going out of fashion. Sometimes trying to have a conversation with me about one subject. I can be going from one subject to another subject to another subject. And then there's my memory. Oh my God trying to have a conversation with me sometimes is like trying to have a conversation. with a drunk duck.

    I suppose the thing that makes me laugh more than anything is when you get the people who see you in your power chair wheelchair and their sort of people that like to pat you on the head and go there there. And then they don't realize what they've unleashed they've unleashed Mr dark who is this. Completely no holds barred. eccentric, Tin foil hat wearing psycho with Progressive ms and autonomic dysfunctionated person who will let you have it both barrels and don't give a shit about it either. Because I have had that happen to me and I find it quite funny when people stare at me and look at me as though I am from another planet. I find it really funny. When you have lived on the outside of society like I have done for the past 40-50 years, you will understand Looking in can be a very funny and worthwhile experience. That's for sure.

    So I get the odd one or two people who actually read my blog posts. I'm very surprised indeed but thank you for reading and sometimes I just wonder if what I'm saying makes any sense to anybody seriously. I have joined many MS forums over the years and many places where people with MS go to talk but they seem to just vanish !!and disappear like most of the MS groups in the UK. One minute there there, the next minute there gone.

    So, if there's anybody who reads this blog that has any email addresses of MS groups anywhere in the UK or anywhere in the world for that matter, that I can publicly advertise on a separate ongoing blog post.., so if there's an MS group say in Brattaslava, that's just a name out of the air that wants to say, "Yep, there's an MS group there." Well, I'll stick it on up so people know about it. So people can go there, people can meet the people and people can see people because the most important thing, if you have MS, you should be talking to other people with MS. Yeah? Because the more people that get together and chat, the easier it is to deal with the affliction, the illness, the sickness, the madness that we have. Seriously, talking really does help.

    Trust me indeed when I say to you, I know many, many people with many chronic illnesses. Many of my friends have passed recently, unfortunately. And what I say is, if you're out there and you want to have a bloody good rant, and you have no one to rant to, you can always rant to me. I don't really care. You can send me an email, ranting. You need to rant. I'm always here for people who've got MS who need help. Remember that, folks, because people with MS understand people with MS. Yeah? People who are starting out on the MS trail, and I know that sounds a horrible thing to say, they need to know the truth of how it can progress. Seriously, I'm prepared to tell the truth, the raw truth, that a lot of people won't talk about, you know?

    So, if you have any serious questions that you would like answered privately, I will answer privately. But if you have any questions that you would like to be shared publicly on my blog and answered on my blog, just get in touch with me, drop me a line. All emails and everything will be treated in the strictest of confidence. Why should you suffer in silence? I know I suffered in silence for many years. Sometimes knowing the truth is being better than being gaslit. !!!!

    As ever, sending anyone and everyone who reads these words, peace, healing, love and light, no matter whom or whatever you are, or wherever you're from.

    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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    ⚠️ 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

    well fellow humanoids So, as ever, the nhs have screwed up yet again. I asked months ago to be transferred from one hospital to another because the neurology department where I'm at at the moment is not the best and I wanted to go to the better neurology department. Well, I've been waiting for months for an appointment. I received two letters today and apparently they've never even heard of me at that neurology department and they said even if they had it was so long ago we've destroyed all his records.

    So you can guess that I'm a bit pissed off with everything. With everything I've been going through over the past load of months. And I thought I was actually going to get somewhere. But again, I have been proven wrong. I have to suffer just because somebody can't do their job properly.

    They must think that I love having autonomic dysfunction and progressive multiple sclerosis, and have a B bundle block heart issue and a weakened heart wall and everything else that's going on with me. Because as far as I'm concerned, I can't see anybody who really gives a fuck about me, apart from my own family.

    They must think that I like being in pain 24/7, they must think that I like not being able to eat anything due to my condition. And then if I eat the wrong food, I end up critically ill sometimes. Really, they don't give a damn. And nobody even listens. You're patted on the head and placated.

    So now I'm completely stressed out due to somebody who cannot do their job properly. I feel absolutely sick to the stomach of all the gaslighting and BS that I have had to put up over these past 40 odd 50 odd years. It's been un bloody, believable what I've had to go through and how badly I've been treated. It seems the louder you shout, the further back in the queue you go. It just seems like nobody gives a damn anymore.

    So, it's Tuesday and I am completely stressed out. My neck is no better. It is absolutely unbelievable. I had no sleep at all last night and my autoionic dysfunction has been on the edge as well. So yeah, I could have done with some better news but there we go.

    Sending peace, healing, love and light to whomever or whatever you are. Sentience is a thing of wonder.

    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
    enter image description here