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.

About Me

Old soul. Frayed nerves. Unapologetically alive.

I don’t write to comfort. I write to tell the truths polite company avoids — illness, silence, being forgotten, and what’s left of you when life strips everything else away.

I live with Multiple Sclerosis, but MS isn’t the whole story. It’s just the predator wearing a different mask each day. What matters is what survives underneath: humour, rage, ritual, memory, and the stubborn spark that keeps me writing.

I don’t do politics. Not left, not right, not the endless shouting match in between. Pain doesn’t care how you vote, and neither do I. This space is human, not political.

I write like I live — between worlds. One foot in the everyday (wheelchairs, hospitals, the fridge humming at 3 a.m.), the other in something older and stranger. Sometimes I call that Mithra’Kael, the Bound Flame: archivist, witness, survivor. It’s the name I use when my body fails but my words don’t.

This blog is part journal, part ritual, part middle finger to a world that tries to polish pain into something palatable. Here you’ll find MS stories without the PR gloss, family ghosts, dark laughs, and the small, fierce moments that cut through the noise.

There’s love in here too, buried under the salt and ash — but you’ll have to sit with the dark to find it.

If you’ve ever been told you’re “too much,” “too complicated,” or “not enough,” you’ll fit right in. Step carefully. The veil’s thin here, and I see straight through.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
@goblinbloggeruk sick@mylivinghell.co.uk

  • 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

    A Very Good morning, good afternoon, fellow humanoids and eti , where ever you may be, Well, it's a very wet day here in the southwest. We've been experiencing rainstorms most of the night and throughout this morning, unfortunately. And it is getting rather cold here as well. As I look out the window, all I can see is a grey nothingness of sky, full of rain and well grey yuck. Oh dear me, and today It promised to be a sunny warm day and afternoon. I suppose that tomorrow and the next day will be pretty much the same. Well, this is the sort of weather we get these days isn't it? It is quite amazing. Rain, rain and more rain and even more fog.

    What happened to the weather?

    Yes, it's depressing looking out of the window these days because well everything is so dull and drab there is no color to look at so to speak. The sky seems washed out all the time and then we have all these weird clouds It's quite strange really. Of course I can remember the 1960s to 1970s and the skies were lovely and blue. The sun was yellow and warm. We never had any of this horrible weather we have now. I remember going to school and it would rain and it would be a warm rain. It rained for a few minutes. It's gone. Yes, the weather has definitely changed. Well, I suppose it's getting colder. I say it's getting warmer but to me having MS it's like getting colder and hotter at the same time. I know it sounds a bit weird but when you have MS it can cause all sorts of issues. The heat and the cold. There is no such thing as a good temperate climate I'm afraid. Well, not in the UK anyway but I hear Portugal is supposed to be quite good.

    No market, the weather is atrocious.

    So I have been looking forward to this all week and yes, the market that we only get once a month Well, I'm not gonna be able to get there. What with the weather? It is too cold It is too wet and there are some quite mega puddles about I know it's only a couple of miles to the market But the thing is my three-wheel trolley of death does not like the wet weather and I fear that the brakes might not be very good in this wet weather either and Yeah, I don't want to be having an accident that would never do So it's in the garage and that's where it's going to stay till tomorrow when I'm going to try and go out for a few hours somewhere with Albertine and then hope it's fairly dry because the cold and the wet, well, these mobility scooters don't like the cold. No, they don't. It affects their performance quite drastically. It's... Battery does not last very long in the cold. It can drain overnight if you leave your battery outside. Yes, it can. And I have lost two sets of batteries over the past few years, and it's cost me nearly 400 quid each time, I think. And that's not good. But there we go. We learn. And when we learn at our own costs sometimes...

    Maintenance of mobility scooters

    The most important thing to remember whatever mobility scooter you have is to keep it regularly maintained. I found the most important thing is squirting lube on the bearings on the wheels. Because believe it or not those bearings do need lubrication and all you have to do is remove one nut on mine and you can see the bearing and just squirting in some silicon grease does the business. It makes that ball race go round like a dream. and also generally keeping an eye on the tightness of all your bolts as well as what I have found on my three-wheeled scooter of death literally after going out and coming back there are several nuts that decide to come loose, I have now got some lock nut solution on those to stop them coming undone but the quality of some of these nuts and bolts ....I've never seen such rubbishy nuts and bolts to be honest with you ...

    The next mobility scooter that I'm getting

    The next mobility scooter that I'm getting will be a four-wheeled mobility scooter and it will have solid tyres. Yes, punctures are a hazard on a mobility scooter if you're on the road or pavement as there are all sorts of horrible little things that can quite easily puncture your tyres. At the moment I have to carry a Tyre pump and a solution to putting the inner tube in case I have a puncture. Yes, being caught out in the middle of nowhere with a puncture is no fun as I have found out to my cost when I had to bring my three-wheeled scooter of death home on two wheels. That indeed was precarious. Also, I'm going to make sure it's a scooter that has a removable battery so I can put the scooter in the garage and charge the battery separately. And keep the battery out of the cold and also have a spare battery is also a good thing.

    Also on the three-wheeled trolley of death or scooter of death or whatever we call it, there is a big big big problem and that is if you go too far, you're not coming home. Yes, the problem is here that the distance that it says in the book isn't the distance that you actually get when you're actually out on it. So, yeah, the mileage is a bit iffy to say the least because it's got to do with weather conditions. And as we know, weather conditions in the UK are pretty crappy, so it's going to be pretty crappy battery performance on a cold day. So yeah, the new scooter that I am hopefully getting does about 30 miles and I'll carry a spare battery so that'll give me maybe what 60 miles but who the hell wants to do 60 miles on the mobility scooter in a day? Well could you actually do that? Just imagine the traffic hold-ups and the abuse that you would suffer. It'd be quite comical really. It'd be a bit like having a tractor going slow with big bales on the back and yeah you get the picture.

    UFO UAP disclosure and other things.

    So they say aliens walk amongst us. I find that quite exciting if it's true. But what happens if we're the aliens? Has anybody ever thought of that? I know, that's a bit weird, isn't it? So I hear no one ask out there, well how's your autonomic dysfunction going? Well, how is it going? I'm managing to keep it down to a bearable level. using the AI to help me with what I can and cannot eat, and we went through a list of foods that can set off histamine reactions in my body, and also foods with histamines in that can cause a reaction. I was surprised to find that even some foods with no histamines in can cause a histamine reaction in the body and can cause the body to make histamine. I was surprised but I have done what the AI has told me to do.

    Shh don't tell the nhs lol

    Now, the thing is, let's keep this quiet lol . I used a medical AI. And to be honest with you, it's better than any doctor I have ever seen. And it helped me so much. It was unfucking believable. So if you're like me and you're really suffering and you are desperate for help and there is none coming from the NHS, what I suggest is try a medical AI. And it helped me, it put my mind at rest. And my autonomic dysfunction now is at bearable levels. I really have had my eyes opened that speaking to an AI about my MS and autonomic dysfunction has been more fruitful than ever talking to doctors, nurses, MS, nurses, or neurologists, or any healthcare professionals, to be honest with you. The thing is the AI listens and listens and listens and listens. It doesn't ignore you, it doesn't gaslight you, it doesn't treat you like a fucking idiot. That's the difference. AI treats you more like a human than the doctor or the neurologist does. You go see the neurologist or the doctor, it's a pat on the head. Good boy, good girl. Now fuck off. Go away. I'm not going to speak to you for weeks to tell you what's wrong with you. But I already know. You know, these people act like God. Well they're not gods. I've proved that because I've had AI help me and I trust AI over the triage I've ever had anywhere else.

    But that's my own personnel opinion always seek help from a healthcare professional if your not me

    So yes, I have used modern day tools to help me. But enough of all that, that was a bit of a rant I'm afraid. Well, I've been waiting for ten years to get this autonomic dysfunction sorted out, and well, you know, I'm nearly there, but I don't think I am.

    Stress levels. It was due to a double glazing salesman would you believe?

    This week has been one of the worst weeks for a long time for my stress levels. I suppose this is one of the first times I've ever talked about my stress levels. Well, I find that people can stress me out and when I get too stressed out, I tend to react. And yes, yesterday I had to leave the room due to getting so stressed out. It was unreal. It was due to a double glazing salesman would you believe? He was trying the hard sell and to be honest I could see he was trying to push bully maneuver you know the sort of thing your wheelchair use you're also a pensioner and yeah you know the real hard sell big boy pressure stuff So after about 10, 15 minutes of his bullshit, I decided that I was going to go.

    But he kept on and on and on and my fuse was getting shorter and shorter and shorter and I was getting really wound up. You know what it's like and I just had, I just said, I'm not feeling too good and I had to leave the room and an Albertine deal with it because the guy had me really stressed and yeah, I was feeling so angry, it was unbelievable. I wanted to deck the bloke, I know, that's a really bad thing and it's a really bad place to be in. But when you're under pressure and somebody knows that you're ill and they're pressuring you, it's a nasty thing to do, isn't it? So I had to suffer massive stress. Yeah, well, if a certain person had been there, that wouldn't have happened. And well, there we go. So yes, when you are disabled and you are in a wheelchair, you can be at the mercy of people. And I don't find that very, very nice. Yes. So it really is a fucked up world.

    Sometimes I think what's the point? To all of this bullshit that I have to go through every day. or the stress I have to go through every day, or the pain I have to go through every day, or the headfucks I have to go through every day, the brain fog, constant spasms, the constant, the constant horrible feelings I have to go through in my head and my body. If you go through this, do you truly understand what it's like to have pins and needles in your body? Lightning bolts going up and down your spine, going down your legs. Your tongue is half eaten away because when you try to eat food, your tongue's so numb, you chew your tongue off. When your tongue starts spasming, that is the freakiest fucking thing of all, and that really, really freaks me out. It's just awful. And the thing is it plays hell with your mental health as well. And really, really, really is debilitating and people just do not realize. In fact, I believe a lot of people don't give a fuck about me or care.

    To be honest, I feel like I've been pushed in a corner by everybody and just left a fucking Rot. Yeah, that's the way it feels, but there we go. Life is generally very strange, but when you have a chronic illness, or you're me, life can get very strange. Yes, so fellow humanoids and maybe aliens out there who are reading this blog, I wish you a most pleasant happy weekend. And if I have said anything that has upset anybody, I am truly sorry. And yes, everybody have a good one because I need to at some point have a good time. But the hell I'm going through, fuck knows when it's going to happen.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    Well, a very good afternoon to everybody.sorry but I am a bit down atm Yes, I have been to see the Neurologist, a three-hour round trip which was, to be quite honest with you, a complete waste of time. So I am off to my bed when finished I am so dam tired and stressed out.....

    I was prepared with my notes, but was I allowed to speak?

    I had everything written out and really he didn't give me a chance to finish off what I was saying. what It was, I don't know what's wrong with you sort of thing. I'm going to have to look it up. Loads and loads of excuses and gaslighting and placating. Ask me, "Oh, that shouldn't happen with this and that shouldn't. Are you sure?" Oh, dear me. Never heard of it. I was sat there in my wheelchair, not knowing what to do. Luckily Albertine was there with me as my speech started to fail me. So, after my 15 minute consultation with the neurologist, I am no further forward and have to wake weeks, because he's got to go and look at what he thinks it could be. I gave him a list of everything that affects me, upsets me the whole nine yards. And you know what? He still couldn't understand what's going on.

    severe food intolerance and histamine reactions

    I pointed out I cannot eat certain foods or even smell them because of what it does to me. And he sort of looked at me rather strangely. And then said again, I've never heard of that. So, all I got was a neurologist saying to me, "I've never heard of that, and I am a number wiser." Oh, yeah, he scratched the bottom of my foot, made me push things from my arms and everything looked at me eyes, whatnot. But that's beside the point. I went in there to discuss about autonomic dysfunction. It wasn't even discussed. He didn't want to know. It's as though, "Oh, I'm God. I know what's wrong with you. I'm going to look it up and not tell you. They may not have heard about metabolic Food intolerance's , They may not even know about that, so, you know, when I go to see a neurologist and I have all the information at hand, which I have gone through with a medical AI, everything was correct, it's just they, the neurologist did not want to know. It was either his way or no way. So, guess what, that's it, I'm going to be finding another neurologist in another hospital, because this cannot keep going on.

    heart attack 5 years ago still not being seen

    I was asked when was the last time you saw a heart doctor, oh, that was after my last heart attack five years ago, I've never seen anybody since then. Oh, he said, when was the last time I've seen nobody I explained, I've been left to fucking rot, the health service lost me, and look what's happened. Yes, look what's happened, I'm now so fucked up, so ill with everything, I don't know whether I'm coming or going, and you didn't listen to me and nobody's fucking helping me, so again, I'm stuck, not going forwards, just going steadily steadily backwards. The gas lighting is absolutely shameless in the NHS as far as I'm concerned.

    So, what's next for me?

    Well, I'm quite angry, but in the cold light of day, I have decided that I'm going to fight this, and I'm not going to give up. I'm not going to give the satisfaction of these people, because I know what is wrong with me, and they don't. You know, these neurologists and they're God-complex, it's quite unbelievable. I have put in so much research on my condition, it's unreal. Even using the latest medical AI, and they all came to the same conclusion with all my symptoms. It's a pity that my neurologist couldn't put my symptoms into his AI and came up with what's wrong with me because it would have been very simple indeed. But again, he didn't listen. No, he didn't.

    This has been going on for 10 years.

    All of this has been going on for 10 years in various hospitals with various neuro departments. So, do I have any confidence? No, I do not have any confidence at the moment. Over the past years, the 8 years, I have had some horrendous times and I have been ignored, I have been thrown to the side. It is absolutely awful. It is a hell. The last past 10 years have been the biggest living hell I have ever had to live and I wouldn't wish anybody my life. That's how bad it's been. It seems they want to ignore my symptoms. Yes, like they try to ignore my multiple sclerosis for over 20 years, and then made me go through a living hell to get my diagnosis for that. So yes, I feel badly let down by the National Health Service, doctors and everybody concerned over the last past 50 years. It's been hell. And if you've been there yourself, you'll know what it's like being stuck on a conveyor belt, one that goes round in a circle, the one you never get off, because they don't allow you to.

    Well, there we go, still, sending anyone and everybody peace-healing love and light, and wishing everybody a fantastic week ahead. Happiness and smiles to everyone everywhere.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    So, a very good afternoon to all the humanoids and extraterrestrials, non-human intelligence's, or whoever reads this blog a very good afternoon evening to you all. As we all know, chronic illness is not the nicest things. Having progressive multiple sclerosis like I have, and now this autonomic dysfunction is really, really bad. And I'm hoping that they finally... They finally diagnose my autonomic dysfunction. Seriously, after 10 years this has been going on, I'm just so fed up of the whole thing and I want them to sort it out once and for all. So tomorrow is the high noon moment as far as I'm concerned.

    Finally, after six years, maybe I will be heard. (a bit Ranty )

    Well, tomorrow is the day I get to see a neurologist after 5 to 6 years of waiting. They sort of lost me five or six years ago somewhere on their records. Yes, it was quite the last time I saw them was quite the experience. I must say. Oh, the joys, so I'm wondering what's going to happen. I've been and got all my questions ready by using my medical AI, which I have found invaluable as I have been working my way through multiple sclerosis and this horrible autonomic dysfunction, which has taken the doctors 10 years, 10 years, I must say, of investigation. And they still haven't got it right yet. So tomorrow is a culmination of 10 years of frustration and 10 years of being gaslit and ignored, so it should be quite interesting what happens.

    Listen to me for somethings sakes !!!!

    So I have my list and I'm going to read it out to him. I'm not going to give it to him to read because he can browse through and nothing will happen. So I'm going to read that list. I'm not going to let him hit me with his little sticks or whatever the fuck he likes doing. I'm going to sit there and I'm going to be apologetically reading out what I've put. And I'll have my carer with me as well. So yes, I'm going to see what he has to say about this. And then I'm going to find out why he touched me to the curb six years ago, took me off his books. I'd love to know about that, why I've been let go for six fucking years out in the wilderness on my own, with no help but so fucking ever. And if I don't understand something, I'll have my medical AI on my phone. So I'm not going to let him get away with using terms and trying to bamboozle me. I'm going to show this person that I am a person. I am not some fucking num-nuts. And I am fed up with being treated like a lump of meat at a meat market !!!!!!!!

    White coat syndrome coming in.

    So as we know I have really bad white coat syndrome, and already I am stressed out, sweating,feeling sick, SO I am going to have to put on my big boy pants lol... drop a few lorazapam me thinks lol....as the closer I get to having to go the worse I feel... I am trying not to think about it.. and trying to be positive but its getting harder to do as time goes on as you can only take so much of the hassle and BS I just want it all over and done something to calm it all down some, I am used to my daily grind with the ms, but I need help and there is none anyway we will see what tomorrow brings

    I am felling really weird and strange and very stressed out at this time... I am finding it hard to find words and my heads hurting, my breathing's going weirder I am going to have to lay down for a while before I post this

    The darkness and the abyss

    yes I have that feeling its really weird indeed I suppose I'll have my four-wheeled, slow chariot of death. Yes, it won't go more than about three miles an hour. Even a snail can overtake this one. So, yeah, I should be whizzing around the hospital trying to find where I need to be, playing dodge the patience. Yeah, that's always a good one. Yeah, so it's real inconvenient having to go to a hospital. I used to have a visiting neurologist back in the day, but neurologists don't seem to do places that are out in the boonies anymore. You have to travel hours just to go and see one. And then when you go and see one, you end up disappointed and with a dissatisfaction result, but that's life I suppose, I should be grateful that I can get to see someone.

    Well, there we go, still, sending anyone and everybody peace-healing love and light, and wishing everybody a fantastic week ahead. Happiness and smiles to everyone everywhere.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    What an absolutely glorious Saturday it is today. A very good morning to you all. Fellow humanoids NHI and whomever reads THIS. Well, it's been an exceptionally hot Saturday morning and Albertine and myself went out on the three-wheel-trolley of death. Yes, it was an absolute death-defying ride into the town and beyond. As usual, people were watching and smiling As we rode by on our three-wheeled scooters of death, . Quite a few people shouted hello and I pulled over and had conversations with many people this morning which was refreshing and really enjoyable I must say.

    Where can I get one of those mobility scooters?

    And of course the number one question was mobility scooters and wow they really liked mine! And I told them yes it is good but... I have a few issues going uphill with grip as it's a front wheel drive. But I have learnt to overcome this now. It's all to do with positioning and the amount of power that you lay down from the throttle to the motor. Going at slow increments is better than whacking back the throttle. So far, quite a few people have asked where I've got it from. Well, like I said, it's a cheap Chinese mobility scooter off the internet. And I gave them the name of the company and there we go. And I would imagine they're off to that website to say, "Hey, I want one of those." Because they really do look quite cool. And they are under £1000 as well. So that is even more mind blowing. And if you're disabled like me and you're that exempt for things to do with mobility, then you don't have to pay the VAT. So that's an even better and good reason for getting one. I can quite honestly say that it has changed my world. I can go practically anywhere and really does make a difference. The cost of running a car and van has gone completely out of control. What with the cost of fuel, insurance and everything else? So yeah. That's where we're at now. scooters rule okay.

    maintenance the key to longevity of your mobility scooter

    Remember maintenance will save you a lot of money in the long run if you buy one of these cheap mobility scooters make sure all the bearings are lubricated and that you have either solid tyres or carry one of those USB pumps along with one of those liquids you can put in the Tyre if you get a puncture. You know sensible things a bit of rope so if you're actually with somebody and their trolley goes down you can actually tow someone. That's a good thing to take with you and also take plenty of water for hydration as well and also take an old wibbly wobbly bike spanner because you never know when you're going to need a spanner. And also did you know if you break down and you're a member of one of the motoring services like the AA or RAC You are able to phone them up and get them to recover your mobility scooter I know it sounds insane but you can. My scooter is insured, taxed and also has a registration certificate So everything is completely legal and that really is the only way to go... Also remember to keep your scooter in a warm place as well, because cold is the biggest killer of Mobility Scooter batteries.

    So if there is anybody out there who is looking to get themselves a scooter or a "let me see" a mobility trolley then go for it it will save you in the long run an awful lot of money, you get to go everywhere but it will be a little slower but who cares you can just put your headphones in your ears and just go along and enjoy the view It's like I said to somebody today. I wish that I wasn't on a mobility scooter, and they said why is that? And I said well if I didn't have one, that would mean I didn't have MS I think they understood what I was trying to say. .

    Music, Aliens and other things.

    Well, my music is going well. I have produced Brothers of Destruction number one two three and four and have had them played on Vipestorm Entertainment on Mixlr and I have also had Fran Sam Fran Sam the hit-man played on there as well, which is a adult themed comedy sort of thing and Also, I have got quite a few other Songs and it's all sort of quite crazy stuff. That's for sure So as for music, things go well. But trying to think sometimes of lyrics is absolutely mind bending and can cause me to have quite the brain fog.

    The thing is I'm going to push myself and push myself and push myself I'm going to live every minute of the day like it was my last Because why wouldn't you I? Want to experience everything still I don't want to give up. Why would I I don't care about the pain I don't care about the discomfort. I don't care what people say about me. I just want to live a long Gish and a happy life. I don't care about the illness. I just want happiness That's the important thing happiness Love and understanding and friendship. That's all I want Yet people can't understand that I find that very strange But there we go.

    loosing everyone

    I think I have lost the art of making friends, nope its the ms when it came a knocking... Everybody fucked off. Everybody deserted me. It was like I had trod is smelly dog shit that was really extra smelly. Oh man, it was disaster how all my friends just disappeared. You have multiple sclerosis and you tell people And then that's it. Wow, your whole life goes down the toilet. But fuck them all, because as far as I'm concerned, I don't really care. I have Albertine and I have myself, I have my cats and I have my brother, and there we go. That's my brother from another mother, by the way as well. Because my brothers and my sisters don't speak to me, it's really crazy. But that's being adopted for you, when you find your real family and none of them want to speak to you, they just totally ignore you. It's like we're this toy that they pull out of the toy box and want to play with. It's so stupid really, but there we go. But then again, such is life, I was a cuckoo and I will continue to be a cuckoo. But I don't really care, it's their loss really.

    Aliens

    So we come to aliens, yes. Are we being told a load of old rubbish? I wonder. I find it funny, really, that we've had no concrete evidence or proof, yet we are being told disclosure is just around the corner. If extraterrestrials, aliens really exist, well why don't you just tell us and show us and treat us like adults, instead of going around the streets and houses, treating us like children, we do have a right to know you know. It's like everything. They never tell us the truth. They will always invert things. So I don't believe we're going to get full disclosure of UFOs, UAPs or aliens. I think it's just a nothing burger. Like everything pretty much is these days, a massive nothing burger, with extra side of nothing burger chips. But I would love to be proved wrong and n h-i exists. That would be excellent. Because personally I do believe in non-human intelligence, but I believe they're already here and have been living with us ever since the year dot. It's just they blend in so well we cannot tell the difference. And then I was hearing the YouTube Chanel and it said that Ancestry allegedly was looking for Alien DNA. I found that quite funny. So what they're trying to insinuate that some of us are actually hybrid aliens with Alien DNA in our bodies. How really interesting is that?

    Still, that's about it for this day, as it's starting to cool out now. And I'm wishing everybody a fantastic happy weekend, sending everyone who reads this blog. Peace healing, love and lite, no matter who, what or where you are, or if you're an N. H.I. or whatever. Aha! lol

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    Chronic Illness, MS Reality, Spiritual Gnosis & Goblin Truth Writing

    Still good morning, good afternoon. Or hello to wherever or whomever you are, whether you're humanoid, whether you're extra terrestrial or whatever you are, a very good morning. And I don't even know what day it is today. Yes, the heat has really done for me. And yes, the cats, well, they are behaving very strangely in this weather indeed.

    neck issues and a bad mood

    So my neck issue has resurfaced again. The pain in the neck, ha ha, I know, is really, really bad. And of course I'd been and seen a physiotherapist about it. He said lean forwards your head, lean backwards, it will be okay. But I've done everything he said and it's getting worse. So, oh dear, I'm going to have to get in touch with somebody to try and get that sorted out now. Because it's very painful and it has me in a very weird mood. how can I say, touchy as the pain is just so intense. So that means I'm not getting very much sleep and with this heat it is a big major problem. It was 32 degrees here yesterday and as I look at my thermometer here or whatever you might call it, we're up to 28 degrees already. Yes, that's wonderful if you haven't got a chronic illness.

    The Problem With Pharmacies

    So Albertine said we have to go to the chemists and I said well it's okay whether and why not so we both climbed aboard our three wheel trolleys of death and we took our life in our own hands as we traveled at the speed of eight miles an hour on our way to the chemists. There was hardly any traffic on the road, that makes a change. And as we rolled up to the chemists, yes of course. We got there and we parked up and Albertine went to the door and guess what?

    why wtf ?

    The chemist was closed. The chemist was fucking closed. And there was a note in the window because they haven't got a... um... pharmacist. I mean, really... Is it too much trouble to get another pharmacist from another branch just to come in for a day or something? No! Just close it. So all the people that have to really force themselves out of the house to get there because they don't do prescription deliveries, And if you're stuck in a wheelchair or you've got no transport or you're relying on people, it's bad news really, to find that the chemist's shut.

    I find it terrible. so we have to work our way up there and when we get there we have the machine of death. Now as you know the machine of death and me do not get on and I have had many of my prescriptions lost due to the stupidity of the chemists system because they forget to tell me that they have some of my stuff behind their counter that won't fit in their stupid machine. so lack of communication really....

    So hopefully tomorrow morning we will be going early to the chemists and they will have someone there that can give us our prescriptions. That would be awesome, especially in this heat. Because to be honest with you, heat and chronic illness just don't go together as people know. You can lose so much energy and you dehydrate so quickly. You need to hydrate with as much hydration water as possible. Before you go out, make sure you wear a hat even. You know, sunglasses, look the part on your trolley or scooter of death or your wheelchair .

    MS and Heat Intolerance

    Well, yes, we are heading to that time where it seems to be quite warm. I myself find myself in the coolest room in the bungi. Then if that room gets too hot, I will put a fan on. If that gets too hot, I will go into the kitchen and I will open the fridge door. And that is where I will sit on and off for a little while, just listening to music. As I just overheat slightly, I will gently open the fridge door. Yes, that's pure heaven. The most worst thing for me is in the depths of winter I can feel too hot and yeah you get it in the depths of the summer I can feel too cold sometimes. Real double edged sword and trying to keep yourself day to day going is quite something else I think.

    What's the point of people and friends?

    I was just thinking to myself the other day and I was thinking how many people actually keep in contact with me in my family and I thought well as the years have gone by it's less and less and less to where well practically nobody even speaks to me anymore and I sort I wonder why. I sort of think to myself, well, they must be busy with their life and they have their life and, you know, but I have put myself out for my family over the years selflessly and sometimes it really does piss me off because people don't understand what chronic illness is all about. People don't see me all day long and see what I have to go through. They might just see quick snapshots of me.

    This is the real me now ?

    The thing is, if it's because I have MS, and that's the real reason that this chronic illness is sort of putting them off seeing me, I don't know. What is it with chronic illness that you loose or your friends and family? I know I've changed, but I'm a better person than I used to be. So I just can't understand why. Is it because I talk straight and I tell it like it is? Is that it? Is it because they think, oh, I might be dead next week, so what's the point of speaking to me? Because they think they're not going to get a sensible conversation. What is it? What have I done to deserve that? And it really does hurt me to the core sometimes. but I keep that to myself not to cause issues...

    I admit to being a psychic and eccentric, slightly weird. Eh

    I've never been a person to wear blinkers, I've always taken my blinkers off and thrown them down, and seen things basically for what they really, truly are. Yes, I am eccentric. Yes, I am slightly weird, I have weird thoughts about things. Some people might say, because my views on religion, I don't have many. I believe in gnosis. Now, that's me. That's my personal belief So I believe in Wicca gnosis and humanism, all three clacked into one. That's me, really. So, yeah. I only want good things, not bad things for people. And I just think that if people think that's a weird thing to want, then I'm glad I'm weird. I was talking about UFOs way back in the 1970s. I was talking about things back in the 70s when people were generally thought to be mad and I've been proven right that the things they thought in the 70s have happened. So there we go.

    I was a professional psychic medium healer teacher for over 50 years

    Also something people probably don't know about me. I was a professional psychic medium for well over 50 years. And also teaching others who were willing to learn free had many amazing students.. So there we go on that as well. So that adds to another string of my bow of weirdness. So that probably makes me weird because I like to tell the truth and I like to say how it is without being told I cannot say something but these days I am now self-censoring due to all of the sense and sensibility of the world going out of the window to be honest.

    My personnel look

    And then of course I was a lifestyle biker, old leathers originals. That's how I run for most of my life until I had to give up riding, because of the multiple sclerosis fucked me up big time. So I had to sell my trike, which I had converted about 15 years ago. I had a Yamaha 1100 drag star and I got it converted so I could stay on the road longer. And I managed 15 years, and it was 15 years of hell and pain. And yeah, I did it all on my own just with Albertine. Nobody else wanted to really know, but such is life when you're a disabled person. And a disabled person on a bike as well or a trike, people just sort of kind of ignore you or just point at you. I just find it really sick and sad in this society. Nobody wants to help anybody. Nobody wants to smile and nobody wants to be happy. Everything seems so divisive these days. It really is a sad place. So being a biker, being a bit scruffy, being a psychic and being a bit weird really doesn't help you when you've got long hair and a long beard. And you're quite tall, but when you're stuck in a power chair things get very different very quickly. So yeah, you should always make the most of what you've got until you lose it, that's what I say. .... never judge a book by the cover

    Still sending everybody peace, healing, love and light, no matter who or where you are and hoping that if you are in the heat that you hydrate well and you get in the shade. And everybody take care until I drop the next blog post. So thank you very much for reading. I do appreciate all the readers.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    And a very good afternoon to all my fellow humanoids and NHI readers everywhere and anywhere.

    So it's Friday afternoon and it is looking quite okay outside. Very cloudy. Very, very cloudy. It's sort of, It might rain. It might not rain. But then again, it's been quite the week so far. We managed to get the two cats vaccinated today, so they will be allowed to go out into the wilds next week. That was a definite adventure for both of the kittens who are now not so little anymore. And now nine months old, I can't quite believe it. they have grown so large in the size in a short amount of time. They've been with us.

    d1 Transport woes, oh indeed not good.

    Well, in the week I had the misfortune to do a three-hour return trip into mid Devon and back, and oh boy, I felt really, really bad. My back, my shoulders, in fact, my whole body feels rattled to total death. Unbelievable. My neck, it's just like my whole body has just gone, nah, I shouldn't have done that, mate, and it's decided to give up on me. Luckily I was not driving, I have not driven for many years now, and Albertine was playing spot and missed the pothole. Yes indeed, and when you're carrying a chariot of death in the back of the van with some weight, then half give a clunk. When you hit a bump I must say. And now we find out that the one has a slow puncture. Oh, the joys. So we're going to have to take that to our local tire shop and get that sorted out.

    rusty one

    But the worst use is Rusty One is going for an early MOT. And this could be the end of Rusty One. This could be the one bill too far unfortunately. But we live and learn and we will soon see in two weeks time what will happen. As I know there's quite a few things that need doing and it's going to cost quite a lot of money. But when you're stuck in the middle of nowhere, you have to have transport. Otherwise, you go absolutely nowhere. We are lucky here, we have a local milkman who delivers eggs and milk and we have a brilliant farm shop as well, just down the road. So I can't complain. Food here is quite good for what I need, that's what counts the most.

    good news i hear you say ! Neurology appointments two weeks time.

    Well, I had a phone call at 5 to 9 this morning from the neurologist's secretary. And guess what? I've got an appointment for two weeks time. How unbelievable is that? It's not over the phone. It's a personal go to the hospital visit. Ooh! So, I'm going to get my medical AI fired up with every symptom and everything that has happened to me over the past, well, five years since he took me off his books and has ignored me. Yes, my doctor went and kicked some ass and finally people are starting to remember that I fucking well exist about time I say so, but then again, of course this neurologist does not like me. He thinks I'm weird because when I first saw him, of course, I was riding an 1100cc Yamaha drag star, long hair, long beard, biker clothing. I look well, you can imagine what I look like people. And of course, when you're in your sixties and you're dressed like that, it sort of makes them feel a bit strange. And then of course I actually knew what I was on about and he didn't like that because it questions his God complex. And also guess what? Get out of your wheelchair and I will give you loads of drugs and smarties. And I kind of looked at him and said, "Nah, I'm happy where I am, thank you." And then after that, he just sort of let me out to pasture, I think, and I only ever spoke to an MS nurse for five to six years. Never heard or saw hide nor hair of the neurologist until my doctor had told me that I was under no neurology department. And he was shocked and he was very angry. I would say the word "pissed off" would sound more the word I was looking for.

    UFO, UAP and much strangeness.

    So we are seeing four types of alien or non-human intelligence reported by the government that are the extraterrestrials or NHI that have been visiting our planet since Roswell. And I would hazard a guess thousands of years before that. If this is not Project Blue-beam, then it will be a very interesting thing. As I am looking forward to meeting these inter-dimensional non-human intelligence's, as I would like to have a very deep chat with them about certain things that have happened to me over my 66 years on this planet, with the weirdness of tricksters and other strange things that have been going on in my life that I would like to understand. And they also say that these aliens could be demons or Nephilim, or they could be angels or fallen angels or whatever they are. It's a very interesting thing because everybody's got their own take on this. Personally, I don't know why any extraterrestrial intelligence would want to get in touch with us as we are such a war-like planet. To be honest with you, we seem to find something new and if we want it we just go and take it and that's my take if we went out to space what we'd be like and maybe that's why we are living in a simulation. Yes indeed, simulation theory, it's something maybe you should go up and look at because it does not say "Oh there is no God" in fact it talks about the demi urge , gnosis etc. It is really worth looking up and doing some research.

    Still, I wish everybody who reads this blog no matter who, where or what, where you're from, a fantastic, happy weekend, and if you're in the UK, have a happy bank holiday weekend. And don't do anything I would do.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    Good evening, good afternoon, wherever you are, fellow humanoids or extraterrestrials, or inter dimensional beings, whomever or whatever you are, hello and welcome to my blog.

    Well, it has been quite a weekend and quite a few amazing days to start the week with. Yes, things have been quite hectic this week and this weekend, to be honest with you all. I have been doing in depth family tree research witch was absolutely draining and now I am paying for using up all my spoons, The brain fog has started to creep in, the pins and needles. Yes, everything is going. Slightly haywire. It looks as though I'm going to have to this afternoon, going to a dark room with no sound and just lie down. And I think that's going to be it for a while, as I can't see myself doing anything when I'm feeling like this. Still, unfortunately I'm going to have to keep this short, so sending everybody out there peace healing, love and light. And remember, a nothing burger could be UAP / UFO disclosure. We might not know for a while, but when we do, that might be quite interesting. Stay well everybody. until next time...

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive 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
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
    enter image description here

  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. Some AI written content

    What Causes Multiple Sclerosis? A Simple Explanation

    And a very good afternoon to all my fellow humanoids and NHI readers, I trust all is well in your world or even realm... uap/nhi drop coming soon as well!!

    Multiple sclerosis (MS) is a condition where the body’s immune system mistakenly attacks the brain and spinal cord. Over time, this can disrupt how nerves send signals, leading to problems with movement, vision, balance, and energy levels.

    Scientists now believe MS doesn’t have a single cause. Instead, it develops when several factors come together: genes, infections, and environment.

    1. Your Genes: The Starting Point

    Some people are born with a higher chance of developing MS. This doesn’t mean they will definitely get it, just that their immune system is more sensitive.

    Researchers have found many small genetic differences linked to MS. The most important ones affect how the immune system decides what is “safe” and what is “dangerous.”

    Think of it like this: some people are born with an immune system that’s a little more easily confused.

    2. A Common Virus: Epstein-Barr Virus (EBV)

    Almost everyone is infected with Epstein-Barr virus at some point in their lives. It often causes mild illness or sometimes glandular fever.

    What’s interesting is that nearly all people with MS have had EBV in the past.

    Scientists think EBV may “confuse” the immune system in some people. After infection, the immune system may accidentally start attacking the body’s own nervous system instead of just fighting the virus.

    This is currently one of the strongest clues in MS research.

    3. Lifestyle and Environment

    Certain everyday factors may increase or reduce risk, especially when combined with genetics.

    Sunlight and Vitamin D

    People who get less sunlight—especially during childhood—seem to have a higher risk of MS. This may be linked to vitamin D, which helps keep the immune system balanced.

    Smoking

    Smoking increases the risk of developing MS. It may cause inflammation and make the immune system more reactive.

    Weight in Teenage Years

    Higher body weight during adolescence is linked with a higher risk of MS later in life. Scientists think this may be due to long-term effects on inflammation and hormones.

    Where You Grow Up

    MS is more common in countries farther from the equator. Interestingly, if someone moves to a different country when they are young, their risk often changes to match their new environment.

    This suggests that childhood exposure is especially important.

    4. It’s the Combination That Matters

    MS usually doesn’t come from just one thing.

    It seems to happen when:

    A person has a genetic tendency They are exposed to EBV Environmental factors like low sunlight or smoking add extra pressure

    When these factors overlap, the immune system can become misdirected.

    5. What Happens in the Body

    Once MS begins, the immune system starts attacking the protective coating around nerves in the brain and spinal cord.

    This damage can:

    Slow down nerve signals Cause symptoms that come and go And over time, lead to lasting nerve injury

    Even when symptoms improve, some quiet damage may still continue in the background.

    Summary

    MS is not caused by a single trigger. Instead, it develops through a mix of:

    Genetics (how your immune system is built) A common virus (EBV) Environmental factors like sunlight, smoking, and early-life conditions

    Scientists are still working to fully understand it, but one thing is clear: MS is a complex condition shaped by many small influences coming together over time.

    wishing everybody peace healing love lite no matter whom what or where you are... I'm drifting through the digital fog like a ghost ship in a magnet storm

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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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

    And a very good afternoon to all my fellow humanoids and NHI readers. Oh indeed yes. and welcome to my blog on this overcast afternoon. Well, to be honest, it's been quite a strange few days. So, I bet you're all wanting to hear what happened with the doctor's phone call. Yes, well I shall explain it to you now and I think you might be slightly surprised.

    You haven't been registered with neurology for over five years

    So, apparently, when I spoke to the doctor, the doctor was very concerned indeed. When I told him I hadn't seen a neurologist for over five years, he then informed me that I didn't have a neurologist. I said to him, "What do you mean?" He said, "Well, it seems as though you just don't have a neurologist." I said, "Well, I have an MS nurse." He said, "Yes, you have an MS nurse, but you do not have a neurologist." And this has been the problem. So, I haven't had a neurologist for over five years, and the thing is, nobody has told me. So now, the cue for the Neurology Department at my local hospital is over a year.

    Worsening symptoms

    My neurological emergency was before Christmas and it is getting severely worse. Yes, the doctor is listening to me, but the MS nurse apparently has been gaslighting me for what seems to be five years according to the doctor. And I would suppose that's why in five years I've never had an appointment with a neurologist even though I've asked for one. So it seems somewhere along the line they've taken me off their books. How about that and never even bothered to inform me?

    The DR sorts it out !

    So now I'm having to get my doctor to sort all this mess out. So it seems that someone has been gaslighting me and it seems I've been taken off the neurology team's records at the hospital. Which is rather alarming because over the past five years I have had several major attacks that have caused the ambulance to be called and severe heart issues etc etc. I don't want to go into all that at this time but you can see where I'm coming from. I know what the problem is with me but they will not acknowledge it. They won't even speak to me. And the worst thing is I know why this has happened and I know why it is happening.

    I pissed my neurologist off being a lifestyle biker.

    Obviously, I must have pissed off my neurologist, what, five, six, seven years ago, just before COVID. The thing was I've got very long hair. I've got a very long beard and I'm an ex what you call lifestyle Biker one of the ones that you wouldn't want to take home to your mother Long hair, you know the sort the ones that are true fun that don't cause harm to anybody There are lovable big teddy bear type people So you get it, I wear old leathers and old jeans and when I went to see my neurologist all those years ago I was in my bike club gear and I had an 1100 Yamaha dragster and he did not like that and he did not like me and he took an instant dislike to me or so it seemed. But ever since that event, I used to see him at an outreach center, but he refused to go to the outreach center, and I refused to go to the main hospital, which was a long way off. And I couldn't get there because of my multiple sclerosis, funnily enough, So, I was supposed to go to the main hospital. And after that event, I hadn't heard hair no hide of that neurologist since. So I think he took me off the books on that very day and he never told me. because every time I phoned up the MS nurse for help, she never has referred me to the neurologist or to speak to the neurologist. It's like I was being gas-lighed and I never had an appointment with Progressive MS.

    Medical marijuana and a biker lol

    And another thing he didn't like was I'm in a wheelchair. And because I'm in a wheelchair and smoke medical cannabis, And I also refused to take all the drugs they offered me due to all the horrendous side effects that I'd suffered many years earlier. he didn't like that either. So there we go. It's a case of I didn't fit his paradigm and his paradigm was not going to shift for me. So hopefully he'll retire soon. He basically said that because I was in a wheelchair, he wasn't going to give me any of the nice new drugs, You know get out the wheelchair. I'll give you all the shiny nice new drugs He said because I refused to get out of the wheelchair And refused to go on that paradigm He didn't like that at all..

    I must be a complete moron, people can't understand what I'm saying.

    So there I was telling him my balance is completely shot. I Go over I can't use sticks. I'm out of breath because I've well he won't listen to me He's just interested in pumping me full of drugs and get me out of the wheelchair. I could not believe that it really did my head in well anyway, I am and unfortunately have severe reactions to practically all of the big pharma medical drugs and That's a shame

    Medical marijuana, my life's saver.

    So for over 20 years, I have been smoking marijuana and for four of those years I have been smoking medical marijuana and that is the only thing that has helped me along with the THC CBD oil with my MS, my spasms, my spasticity, the pain and quite a lot of the other things that happen as well. So yeah, you know, there is seemingly, I couldn't take their big drugs, they didn't like me, so there we go. So you tell me what you think, the guy obviously didn't like me, so you know, that's life. I remember sitting there asking him and I told him, I said, "Look, I smoked marijuana." And if I get busted by the police, would you back me for smoking the marijuana? And he did not like that whatsoever. It really did his head in. Well that was what, that was probably eight odd years ago. So you can imagine the hell I've been going through. And now I'm coming closer toward the end of all of this and we will see what the outcome will be in the next few weeks hopefully.

    What I get from all of this.

    If you are like me and you are different, or you are weird, or you're into something, or you dress differently, or you think differently, we all think differently and we're all different. Now, I think no two people are the same. And what I get from all of this, I was plainly not liked for the person who I was. I was a victim. He obviously didn't like the look of me, he didn't like me totally and it really did show. So yeah, I always say never judge the book by its cover, but what you find these days is everybody judges the book by the cover, which I think is blatantly unfair in this today's society.

    Three-wheeled trolley of death!

    Well, I've greased all the bearings, I've tightened all the nuts, and it seems to be going quite well. I've also solved the grip problem as well by getting some grip tape put on the wheels, and hopefully that will help it with the grip issue that it does have. I'm also carrying around a pump and some liquid to put in the tire just in case I get another flat tire as well. Hopefully soon the new safety additions to my mobility scooter will arrive. I will be challenging viper storm to a race lol Yes, it will look a bit yellow or greener. I've got some see me tape because it's what we need to do really to be seen and to be safe because if you can't be seen and those mobility scooters are rather sort of small, aren't they?

    bigger and better scooters

    I don't know why they can't build bigger mobility scooters with a bigger engine, maybe a really small three-wheeled Robin Reliant with an electric engine in might do the trick, something that wouldn't do over say 30 or 40 miles an hour. That would be awesome, something really cheap but I don't think about that do they? If they did I reckon they could come up with some great ideas but unfortunately it's all about governments and rules and regulations isn't it? So we can be waiting for years to get a decent scooter that can do what we really want.

    arghhh shredddder and chainsaw hell

    Still, on a lighter note, all the garden has been done. We had a friend come over and help us with the shredding and doing a bit of chain sawing and all the work's been done and everything is looking glorious in the garden. Unfortunately, I will not be able to benefit from the garden due to my autonomic dysfunction and the histamine intolerance that I have, which is pretty brutal, at the moment and in the height of the summer is even more brutal.

    Still wishing everybody peace healing, love and light, no matter who, what, and wherever you are, on this planet, that planet, this realm, that realm, or wherever, have the most wonderful of weeks ahead.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ
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