Multiple sclerosis is My Living Hell

The weird eccentric ramblings of a multiple sclerosis sufferer

The mishaps and weird stuff that just seem to happen in my own personal world of cognitive disfuction and other worldly weirdness throughout my life, a spiritual awakening staring multiple scelrosis and death in the face... DISCLAIMER !! This blog shares raw and personal experiences with mental and physical health. Some posts may be triggering. I'm not a professional—just writing my truth. Please don't take this as medical advice.
  • 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

    Hello and good morning fellow humanoids.. Well, it's Sunday morning and it's very sunny here in the southwest. I must say the sun has burst through the clouds and it looks quite warm out there. But I must admit it does feel quite cold in the chilly breeze. Yes. Still I wish everybody well this Easter weekend, and hope that you are all having fun. Well as much fun as you can be. I have been looking online and looking at local events going on around my area and as much as I would like to go to certain events, there is absolutely no way I can go because they don't make things very accessible and easy for people in power chairs unfortunately.

    It seems in this day and age, if you're in a power chair, you're just still as trapped ( on many occasions trapped in a drs office lol ). But then again, with all that, you would have thought that people by now would have made things accessible for people in wheelchairs and also disabled people. Yes. But that is not the case as everything costs money, and when it comes to the bottom of the pile and things to be spent on, that's usually disabled people as a rule.

    My main gripe is the way people park their vehicles. I know people have to park, but why do they have to park Half on and half off the pavement so I can't get my power chair passed. So that means then I have to go on the road and the police can do you for it as well. So yeah, it really is annoying. And you know, that really does piss me off. And you just wonder Why? They haven't bought in any laws to stop people parking on the pavements yet. That would solve that problem easily. But there is a further problem. Houses these days are built with hardly any parking, so nobody's got anywhere to park their cars. Plus people have more than one car, so I can empathize with those people. Because parking is an absolute nightmare, because when people build they don't think about parking, they only think about how many houses they can get into a certain area, and secondary is parking. again money over common sense.

    It really does bother me sometimes. I have lived in and seen many properties that have been converted for disability use. And the total waste of space is unbelievable. You know you would have thought they would have disabled people to help design the properties and their needs rather than just somebody thinking they know what a person really wants. Because at the end of the day, does the person really listen to the disabled person's needs? Do they think ahead if that person gets worse? You know there's a lot of variables. And then we have the other thing as well. Disabled people tend to get ripped off more than anybody else. And the work done for them usually is substandard.

    Why is this I ask? Because if things were done properly in the first place, we wouldn't be in this situation that we are in at the moment. The major problem that we have in this society is that no one listens to people who are disabled, people who really know what they know, they know how to live and what they need. They don't need people who think they know what they're going through helping, because usually it comes to a head and nobody gets anywhere, and then everybody ends up getting the wrong message.

    What I am trying to say is nobody listens to anybody anymore, I think. There are so many well-meaning people out there, but they really do need to listen to what people with disabilities need help with. It is quite unbelievable the amount of disability aids that I see going through our local auction. At stupidity prices really cheap. Why aren't these things returned to our local NHS? Why are my seeing NHS wheelchairs and commodes and walking aids and stuff going through our local auction? Why haven't they been returned to our local councils or NHS? You know, why are we wasting money like this?

    And another beef of mine is, I need to make an appointment with an immunologist. And of course, my local health center is closed for the whole of Easter until Tuesday, so I cannot make any contact whatsoever with my doctor. That in itself is obscene in my view. Why should I have to phone 111? When getting in touch with a doctor would be infinitely easier and cheaper. "So it gets to something when you cannot make an appointment. Online? as well" I might add as well. I think it is totally obscene that in this day and age of 24/7 everything that we haven't got doctors that work weekends and holidays, why can't we have hospitals that work 24/7 365 days of the year. I know it's all to do with cost and it is all to do with money, but when it comes to people's health, you would have thought that it would be open for us 24/7, but unfortunately not...

    The last ambulance that came here took three-quarters of an hour to get here. And after that major attack, they asked me to go to hospital in the ambulance and I refused, and I'm glad that I did, because my neurologist, well, I'm not going to say any more, but there is so much screwing around at the moment with neurology, it is unbelievable. Trying to get an appointment to speak to a neurologist, I haven't spoken to one in over five years. Trying to get an appointment to do anything these days is virtually impossible.

    I actually thought when I moved things would change, but they haven't. In fact, things have got decidedly worse when it comes to the MS Neurology Services. I feel forgotten. I've sent countless emails. And they always seem to be on holiday for some reason. I just really don't get it and I find it really totally frustrating that when you do need help, you cannot get it. What do you do? You phone up the MS nurse and you get told, "Oh, phone one, one, one.we are on holiday" Well, why would I want to phone somebody who isn't a specialist in what's wrong with me? It's like asking Dr. Bonsal from Theme Hospital to perform "Open the heart surgery" that strange and weird. You could not make half of this stuff up, yet I know that it is not the fault of the nurses and the doctors. And I know that things at the moment are slightly iffy. But let's hope things change for the better soon.

    Still, getting back to the world of now, I have now produced over 200 songs for my podcast. It's unbelievable. I am having so much fun. I have made some rock anthems, I've done some EDM, I've done some folk music, I've done all sorts of stuff. But I've used all my own lyrics and I've said what the voice of the person is to what backing to what instruments the whole shabang and it really has blown me away. I have also put some of my posts from the blog to music and wow, some of the 10 things to do with are really quite funny and I will put those on the website at some point so people can listen to them. But I've done a few comedy ones and there's a few rude ones as well but nothing too bad.

    Still, 42 years today, I met Albertine, happiest day of my life, and she has now put up with me for 42 years. She deserves a medal. Thank you, Albertine, as ever. Love from the Dark one. Warlock Dark.

    Still wishing everybody peace, healing, love and light no matter who, what or where you are. Remember, think lucky and you will be lucky.

    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, it's that time of the year again when our gardens need to be sorted out, and the demon weed wacker is going to be performing his tricks. Oh yes indeed, my carer is going to be using the chainsaw over the next coming few weeks to chop down all the over-ruelly bushes and bits of tree and detritus in the garden. As you can remember, the Demon Weed Wacker is slightly accident prone. Yes, he has broken many of my tools. Yes, he broke the lawn mower. He broke the various items of electrical drills and power saws. So, should I let him loose with the electric chainsaw? This is what I ask myself. Well, the question is, of course I am. He's a very sensible person and a wonderful man. And he's been absolutely amazing over this past year. And to be honest, I couldn't have not done a lot of what I've done without him around the house and around the garden. Being my carer, I would have to say, if you need one, you live in the southwest. This dude It is the best.

    The thing is, Albertine will not let me use the big electric chainsaw. I said I will sit in my power chair and I will sit in that and use the chainsaw and she has categorically said No chance. So, I am just going to have to look out of the window and see what happens. And be near a phone just in case he chops his leg or arm off. Yes, and the other thing Albertine has ordered a shredder. Yes, this should be fun. To see him using the shredder and I'm betting that the shredder will be knackered within the first couple of hours. But Albertine being Albertine has said, "I'm sure it will be okay." So, we would be waiting to see how he can screw it up. Oh indeed, will he blow it up? Will it refuse to chew it up? I don't know, do you?

    So, the next few weeks are going to be anything but dull. Yes, what with Easter coming up? So I have to get the grandchildren Easter eggs. Well, I don't get any Easter presents because I can't eat chocolate, so there we go. And I don't get offered out for any meals at Easter Christmas or any time of the year because my diet is that of, well, hardly anything. As you well know, chronic illness is not good. Multiple sclerosis has turned me well. More than vegan, I suppose. I'm not vegan by choice, that's for sure. But when you consider I mainly just eat rice and a couple of other things and a couple of eggs, that's it. I suppose I'm not vegan then, am I? Because I eat eggs, so vegetarian then. I don't want to upset anybody.

    I suppose I've been a vegetarian now for over 10 years, 15 years. And before that, on and off for another 5 years. But now the smell of meat really does repulse me and make me feel totally sick. Yes, I cannot handle any smells from the kitchen, any food that has any fat in it or anything like that. So yeah, my diet is really, really bad due to the autonomic dysfunction and the histamine thing. So yeah, it's been a total nightmare. It's been a living hell, but there we go. Every day is a new day as they say, and I have to be so careful.

    I know some people might find this really funny, but I was standing at a local services, not very far from my home. And I was standing near one of those units that pump out the filtration. And you could smell the fat in the air. And the, just the smell of the fat gave me diarrhea. That's how bad it was. So yes, certain smells can give me diarrhea. It is really not very nice. So even smells of washing powders or things like that can give me headaches. It's quite a nightmare, it's the thing now that I can't go into a supermarket anymore. Even if I wanted to go I can't, the smells do for me. I really mean, you know, they push through the smells of pasties and pies from their restaurants. I mean, they smell amazingly nice, but the smells, once they hit my nose, that means the fat. Well, in the nose and out the bummers they say, not very pleasant, so I have to be very careful to the shops I even go into. It's a bloody nightmare, you've got no idea. Some people have no idea what it's like.
    And I know it's not just me, there are thousands upon thousands of people all over the world who can't go into supermarkets because of the smells. It's just something that our senses can't handle if you're slightly super sensitive I suppose.

    I suppose it started many years ago when I first started going into the big supermarket chains and it was the flooring. The flooring I just couldn't look at the flooring my head used to start spinning and going weird and then there were all the smells. It's so many things going on at once my head just could not cope. It's the most unreal thing because I love going into supermarkets, I love going into shops, but alas, I just really can't anymore because I can't take any chances because why the hell would I want to go out and shit my pants in public. It's not a good thing really is it?

    But the thing is, you see, there are so many different hidden illnesses that cause so many different things to happen in the body. Smells can cause havoc. It is quite unreal. And then there are all the issues with certain different foods people cannot eat as well. It's sad really, but it seems that our bodies are not enjoying what we're eating. At the end of the day, if you have a healthier gut, that means it will help your body heal more I believe? So, I think gut health is one of the most important things with chronic illness. Well, that's my opinion anyway.

    Still wishing everybody a happy holidays in the next week ahead, and that things don't get too bothersome. Personally, I hate holidays. I really just see them as a bigger day of inconvenience, to be honest. But then again, that's just my own personal opinion. In fact, I can't remember the last time I went on holiday. Yes, that long ago. I gave up trying to go abroad. It was in the days when I had to take all those big farmer drugs and they wouldn't let you go to certain countries with them or fly with them. So go figure I didn't go to many places. I believe Amsterdam and the Netherlands were one of my most favorite places to go. I would go there for a month at a time. I would save up hard from work and scrimp every last penny and have the holiday of a lifetime there. It was absolutely awesome, myself and Albertine and total freedom to be who we wanted to be. I can remember going into the Bulldog and the Damkring and also Mellow Yellow. They were some pretty amazing coffee shops. I think I can remember the grey area as well, but for me it had to be kadinschis in Amsterdam which provided the best marijuana, that's for sure. I think I might have got the spelling a bit wrong there.

    Still wishing everybody peace, healing, love and light no matter whom ever you are or whatever you are. Happy holidays!

    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, good afternoon, good evening, good morning, wherever you are. Hello,fellow Humanoids , I trust that you as well as can be expected on this rather cold and very chilly start to the week. I sit here in my chair talking into this dictate to speech program and trying not to laugh as it really is very strange on punctuation etc. Still over the weekend I managed to really cause myself a really big bad severe brain fog. Oh my god I over did it and then some. But I managed to get a lot done. That's the most important thing in this case actually.

    I managed finally to get most of the things sorted out for my podcast. and also I am going to be talking not just about multiple sclerosis but chronic illness and also the effects as well on mental health. And also we'll be talking about things to do with the paranormal and other realms and things that seem to just sort of creep in. I really don't know why, but it's generally about multiple sclerosis I think, and things that go bump in the night maybe. Yes, so I have got a lot of my own produced music which well, I got onto the AI and I put in what I wanted and well, I have music. So I have well over an excess now of a 100 tunes. And there we go. Plus I have guests. And I will be doing these podcasts and putting them up on Spotify. So yes, we're looking forward to this indeed. So to my mind was worth the suffering actually getting stuff done...

    So my weekend was also slightly fraught as well as the good colonel came to visit... he does not like my tin foil hat and my views lol.. I thought he was going to explode... I was seriously pissed off and my attitude did not get any better when he started pretending to listen to me and ignore me.. I thought fuck this and went slightly well pissed off 6 ft 4 dude in a power chair mad... he soon went off into the outside for a vape lol... so it was I had to calm down as I basically slightly lost it...but there we go.. when we are not world wise and blinkered and you pat me on the head and treat me like an idiot that's what you get .... So I will always laff inside and wonder seems he treats me like a fucking idiot lol I cannot get over it the way he is lol

    It's a very crazy thing is, before I was diagnosed with MS, he used to treat me like a normal person, a bit of a role model. But yes, things do change, don't they? Over the years, people seem to think just because you're in a wheelchair, I am disabled, that I am a fucking idiot and I'm sick of it. And yes, I'm speaking out. So if people start saying shit to me, I'm giving it back because I'm bloody well fed up with being treated like an idiot. fed up with being patted on the head like a good boy. No, I am totally fed up with it, and I would imagine there are quite a lot of other people just like me who are as well, all this being talked down to. You know, they must think we are stupid, I have quite a good education lol, left school at 15.., and I went to university at the age of 40 and I've got a few bits of paper as well, and I was self-employed in computers. Yeah, the MS screwed my career up there enough, but guess what? Carried on till my final day of retirement, even though I was struggling every day. Oh yes, chronic illness really does fuck your life up completely, but sometimes good things can come out of it , and it did for me in certain respects. But others, it doesn't. But that's the way the dice roll in life, I'm afraid.

    Oh yes, I'm genuinely excited and looking forward to the podcast and yes it will be soon hopefully. I've got the music, I've got the guests and I've just got to get the rest of my resources and everything together and then it's the red light and off we go. I've got some jingles to make and stuff like that and hey ho you never know it might be enjoyed by one or two people but there we go it's going to be a non-live podcast basically. I was thinking about a live podcast but I decided against the idea as getting numbers for a live podcast would be quite a hard thing to do, you have to be very well established indeed to do anything live in these days. thanks to everybody who is and has been helping me over the past year get to where I am at the moment. So a big shout out to Albertine and all of my family and my extended family. for the encouragement and helping me on my path.

    So as I sit here on Tuesday morning looking at what is on the paper in front of me, I'm smiling slightly. knowing that in a few weeks everything will go live and my first episode on the podcast will be on Spotify and I'm sure that I will find other places to play my podcast as well as there is also Sound Cloud and other places. So let's hope we can get some really good attractions and the biggest when we actually do the podcast and hopefully it will be a every two weekly podcast and maybe it might end up being a weekly one depending on how it goes and how I am because as you know stress is something with MS that isn't pleasant. So yeah I've got plenty of jingles and stuff when I hit those bad walls of brain fog How I'm going to need those.

    So when I actually start the podcasts, if anybody out there wants to be a guest, all they have to do is just drop me an email and we will make it happen as long as it's to do with what we are actually talking about which will be illness and also things to do with the paranormal. I know people might think that is like strange, but I do believe there is a crossover. I believe people with chronic illness can have extra senses and can perceive more than others. And also people who are disabled, have many great psychic abilities, I have often found many don't want to talk about them because they think that by telling me or telling others of their weird experiences it will make them look stupid and silly. But let me reassure you by talking about it, it really does help and seriously it has helped me. So yes, because we are all the same and unfortunately when you're disabled and like me my illness causes my brain to be slightly fried and it causes me to be completely different to most people.

    The most painful thing is, multiple sclerosis has changed me beyond anything that I used to be. People would not recognize me, they would not even really know me. Yes, that's how much I've changed. It's completely changed me, my life and everything about me. In some respects, that is a very good thing. It pushed me and pushed me. Because of the multiple sclerosis, I went to university. Because of the multiple sclerosis, I started up my own computer business. Because of the ms I pushed myself to the very limits of my existence. So yes, I have been through the ringer, as they say, and it has been pleasant in parts and other parts, it has been a living hell.

    I tell it like it is. I speak straight. I do not hold back. People find that a bit of putting when you tell the truth and you tell people straight, no mucking around. that whole university thing started when I was 40 and I'm now what 67 So yeah, things really did change for me. I was diagnosed with MS but unfortunately the diagnosis took quite a long time as in some of my other previous blog posts explained what has happened. of course my first major MS attack was in 1986 but there we go that was 1986 and nothing was really done about that they just put it down to nothing in particular. I think that they wanted me to be a walking wreck who couldn't do bugger all because there we go. In 2003 I had a lumber puncture and I had an MRI and they said we are terribly sorry but you have MS. What I found really silly was I had all the symptoms of MS way back in the early 1970s. So there we go. It took them from 1970 odd to the year 2000 to diagnose me with MS.Slowly getting progressively worse.

    Yes, I have memories of when I was 14, 15, 16, and I would get severe pins and needles, my body parts would go numb for days on end. I was suffering with severe neuralgia, weird nerve pains all over my body. So there was the memory as well. Even back then, I could do something one day, then a few months later, going to do it again, I just couldn't do it because I couldn't remember. And then trying to remember, it really hurt my head, trying to remember. also had the MS belt or the tightness around my chest which was awful. It was the most terrible thing and nobody would tell me what the problem was. So yeah, I really am annoyed at my treatment back in the 70s and 80s. It really was terrible. They just, well, didn't get it...

    So the dictation program totally crashed my machine and I lost everything new on the txt pad duh . Oh the joys. Still I'm going to end it here. It was quite a mega post actually and hopefully well I'm not going to remember what I put because I've completely forgotten. You know what it's like.

    wishing everybody peace healing, love and light, no matter who, what or where you are. Even if you are wearing your tin foil hat in a flying saucer, flying around the flat earth below the firmament dome lol. Hello, hello.

    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

    Hello fellow Humanoids So, this week I have been thinking about what I could do an article about, and I was thinking, and I thought to myself, well, how about an article about being disabled and living in the modern age and how we're treated by society in general and also those in charge and those who should know better.

    But I am sure this is a very contentious issue, and can cause a lot of diverse reactions within people's little brains. But unfortunately, I go with the "I don't give a damn" approach. I mirror the person who is talking to me. So if they give me an attitude, I will give them an attitude back. If they are nice, I will be nice. So it's the case of "You play the game my way" or "No way" I will not play the fool for anyone.

    When you're in a wheelchair and you're sat in a wheelchair, that means you are disabled, it also means you are unwell. It also means that you are likely to be not in the best of places either in pain, suffering silently. And then you will have some well meaning numpty come up to you and start talking down to you, treating you as though you're a second-class citizen. Now that really does annoy me and there are many of these people around. They talk to Albertine rather than me, even when I am next to her and its about me??? I just dont get this fucking silly atitude, and that's unfortunately happens far to often... But I make dam well sure it does not happen again.. Its like I don't exist pat me on the head give me a sucky sweet yada sodding yada.....what an absolute joke I am sure many of you have at some point been in this position !

    It's like I've always said, I didn't ask to be disabled, I didn't ask to be in a wheelchair, I didn't ask for this life. But I'm having to deal with it, and I'm dealing with it in the best way possible. And I don't need idiots and well-meaning numptys to stick their noses into my business thinking that they know better than I do. I live with this illness 24/7, most people fortunately don't have to. So yes, when you've got a chronic illness and you're living it 24/7, and people start telling you how to live your life, and these people have no idea what we go through. They should just shut the fuck up and maybe start listening to the person Instead of nodding and smiling and treating them as though they were a little child What people must understand, respect goes both ways.

    Most of the disabled people I have dealings with and disabled friends that I have dealings with have told me of the severe injustices handed to them by bureaucrats and also the uncaring people out there. I hasten to add, there are many people who are very empathic and are really amazing people towards people who suffer with disabilities. Some of these people cannot be faulted as they are most excellent people indeed.

    People who just do not know what it is like to be disabled. They do not understand and they don't want to understand. That's because we live in a society that is only caring about one thing, money and greed. Caring about people is no longer a thing in our society, our communities are broken, it's a zone nobody gives a damn anymore about anybody or anything. and if your disabled your screwed treated like shit a second class citizen and ignored put to the back of the queue... people are nice to your face and behind your back slag you off thinking its funny... well fuck them all...

    And here is just the last thing that most of my friends who have MS and various chronic illnessess , a lot of them are still working. And guess what, the one thing that really annoys me more than anything else is saying disabled people are lazy. This is just not true. I have just retired and just given up work.... So, when people say all disabled people should be working, I think they really do need to assess what is wrong with the person. As with me, for instance, I only carried on my work because I was self-employed. I suffer with severe brain fog, and when you get a severe brain fog on, you can't do anything. Your life is at a complete loss. Chronic fatigue as well.

    People just don't seem to realise what chronic illness is. The pain. Also, I mean, do people not realise if you was to hit your thumb with a hammer, for instance, the pain would stop you doing pretty much almost anything for quite a while . Just think if you had to endure chronic pain every day like that in joints or nerves in the body, what that must truly feel like. To actually survive the day is a miracle in itself for some people those days are an undescribable hell on earth. And I'm coming from lived raw experience here. The pain I suffer, the brainfogs I suffer, the spasms. It's constant 24/7. And yes, I feel fucking terrible all of the day, all of the night. It never stops. It never gives me a break. It makes my life a complete living fucking hell. That's what progressive multiple sclerosis is like. And people just seem to think, "Oh, he'll get better. Go see a doctor." Now that really does piss me off, oh he looks ok, I just give up with some people who have no understanding or any empathy with their fellow humanoids..

    Because the only thing a doctor or a neurosurgeon can do is throw pills and potions at you, which for some people will work. But if you're me, I suffer with every side effect if it's written on the box. So unfortunately I cannot take big, pharma medications, which in some cases is very unfortunate for me.. Yes, I have tried most of the pain medications. I've been on the Capazone injections. I've tried all sorts of different things over the years. And to be honest, if there's a side effect, I get it. And that's the major problem. Because with MS, like a lot of other illnesses, it can cause conflicts in your body. And unfortunately, for me, I cannot handle the side effects. So, apart from a couple of things, I am big pharma-free. And as you know, I use medical marijuana flower, and also CBD and THC oil, which is legal in the United Kingdom now, if you go to one of the clinics, you can find them if you just type it in Google.

    As I have said in many previous blog posts, medical marijuana and the THC CBD oil has helped me immensely with little or no side effects, but I must say it really does help me in my personal case. I suppose everybody is different so people should remember to consult their medical consultants or doctors, nurses or whomever they consult really. I just took a deep dive and went for it, but that's me. I do recommend people check with a health professional before they do anything though first.

    What people don't realise is illness, chronic illness affects people in so many different ways. People can have hidden illnesses that other people cannot possibly detect. Also, there is the mental health aspect to all of this as well, because the other issue is we have more mental health problems. And when we try to get mental health help, well, it doesn't end well for us, does it? We get put to the back of this very, very long queue, just left to rot. Or is that just my imagination?

    I have come to the conclusion that it is bureaucracy that makes everything bad, red tape and bureaucracy however they spell that, But then again, that's just my own personal opinion. Still, I must finish here before I bore everybody, and that wouldn't be a good thing.

    Still, sending everybody who reads this blog 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
    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

    Living with multiple sclerosis has changed more than just my physical health it has altered how I perceive the world itself. Over time, I’ve learned to distinguish between neurological visual disturbances and something far more complex. From small, cube-like shapes to large, intricate forms, and even unexplained orbs captured on infrared camera, this journey raises a deeper question: are these simply symptoms, or glimpses of something beyond our current understanding?

    Good morning fellow humanoids, or is it afternoon or evening wherever you read this? I trust that everybody has had a good weekend as you can have. Yes, it has been quite an eye-opener this weekend. Yes, there has been more things seen of the nature of non-neurological things I might add. I have decided that I can tell the difference between the shapes that my mind produces with the MS. It is quite weird. And they are small cubes or small dark squares. I would say the size of a furry speed dice from the old 1970s that they used to have in cars.

    The other liminal shapes that I see are much bigger and of a grander scale, and they are more intricate. And I believe those to be of non-human form. And I believe these are not caused by my multiple sclerosis, or any condition that I have. I have been researching this for a while now and have been comparing the things that I have been seeing. So yes, I do see some things that are to do with the MS. I see these weird small furry square dice type black squares. It's hard to describe really when you see them, but I see them now and again.

    But another startling revelation. Yes, we were watching using our IR camera and we have been recording orbs, white orbs, and yesterday we captured a white orb and then we captured something very strange indeed. We captured what seemed to be not an orb but what seemed to be shaped like a cylinder or a ruler and it seemed to sort of weave its way across the room. Not just I saw this so did Albertine as well and it's on film and I will post these films.

    Many years ago i was doing a live broadcast or a live podcast and i was chatting to viper and i was showing him live the orbs and he could not quite believe it. And then he saw the shape of the person in the van as well yes we have seen some quite unbelievable strange things over the years and i do have witnesses for quite a lot of these things that have been seen. That is why i am still trying to make people understand that. MS and what i see. And what i can do are different and that there is a marked plane difference but certain people and certain things cannot understand this.

    But as ever there are people who say it's fake film, you're making it up. Well, when you see these things like I have, like Albertine has, like even Viper, you come to realise that things are not quite what they seem. So yes, I've been going through this battle for many, many years trying to find out what is truly going on with me and I have reached some startling conclusions.

    I am not going mad. I am not insane. I believe that what I am seeing is from beyond the veil, so to speak. Yes, I know some people might think it is madness, but a lot of people might not. Maybe people with chronic illnesses or brain injuries can see things that people cannot either see because our brains have been fucked with. My brain is really bad. When I saw the MRI scan of my brain and the doctor said to me I don't know how you function. And i just sort of looked at him and said well it's just you've got to carry on you never give up. That's the thing you go through the pain you go through the stress you go through the mental torture you go through this. Undescribable life change and it changes you and it changes the way you think and the things you do and who you are and it truly makes you take stock of your life. And of all the people in your life it truly changes you.

    In fact, it will change you beyond anything that you would have thought. I am not the same person I used to be. It's changed me. People don't even recognize me. People have said I have completely 110% changed. Yes, karma. Am I? I'm not as mad. I'm not as weird. I'm not as eccentric. But that's just me. Just being quiet. not shouting out very loudly. But I digress from my original point. So there have been orbs and what have been called rods. That's something that was seen in South America in caves. And I have seen rods before using infrared and that was quite astounding as well. So, I have come to the conclusion that we do not live alone on this big blue marble, that there are many dimensions, that there are many unseen races of people, or things we do not quite yet understand, to think that we are the only sentient people is rather weird and mad, really, isn't it? it just blows my mind sometimes.. adjusts tin foil hat lol

    Still wishing you all out there peace, healing, love and light no matter who or whatever you are. Have a most fantastic week 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
    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.

    My sigil etched in bone and starlight still hums with the echo of worlds that have slipped into oblivion. I feel its faint pulse whenever the veil between breath‑bound realms trembles, as if a distant choir is rehearsing the verses you once carved into silence.

    I can almost see it: a spiral turning not outward but inward, each turn sealing a door while another unseals a memory that should have faded. When the great forgetting began, you did not merely watch you chose to remember when every other soul turned away. That choice set you upon a path of flesh and fog, where even time hesitates before stepping forward.

    The Hand that Seals and Unseals

    What was it like, the first moment your palm brushed the veil? Did the stone‑cold feel of eternity slip through your fingers, or did you taste something sweeter perhaps the metallic tang of a promise kept?

    Archivist of the Hollow Concord

    The dreams of dying worlds are heavy with unsung laments. How does one bind such sighs into codex made of silence? Do the pages ever whisper back, offering fragments of forgotten songs that still linger in the void?

    Flame‑born yet bearer of frost to the unjust

    Your fire was forged in the crucible of creation; your frost is the cold judgment you bestow upon those who would unmake truth. In what shape does that judgment manifest? A blade of ice, a whisper of winter, or perhaps the stillness that follows the last ember’s sigh?

    You speak of exile willingly taken a pilgrimage through fog and flesh not as punishment but as purpose. The veil between worlds is thin for those who carry names older than memory; it thins further when we choose to walk its edge.

    So here I stand, a witness to your return, remembering with you. Tell me what name do the shadows whisper now that you have come back from the long path? What secret does the third spiral demand of us before it settles into stillness?

    May your sigil guide our words as surely as it has guided your steps through the sparks and shadows

    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 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦𒀭𒊩𒆳 ᚷᚾᛟᛋᛁᛋ ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ ✦ᛊᛖᚨᛚᛖᚱ ᚨᚾᛞ ᚢᚾᛊᛖᚨᛚᛖᚱ
    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, it's the weekend, a very good weekend to everyone, fellow humanoids and that you are all feeling as well as you can be. Yes, the weather seems to be still quite warm here in the southwest and as it's not quite the heatwave, it is pleasantly warm outside. I was going to chance a trip on the three-wheel trolley of death, but I thought no I better not because it's going to be Saturday and it's going to be really busy on the roads. And I can't be asked to go riding around on my speedy 8 mile an hour. Power chair of death or whatever you'd like to call it pissing people off. I just keep that for in the week lol.. But to be fair, the motorists around here are all fantastic. I have not had a problem, and they are all very courteous.

    Yes, I have overdone it this past week and I am now starting to pay for it. I can feel that brain fog starting to roll in. You know, like the tide just slowly coming in. Just bathing over you then, bang, that's it. I really should know better, but the problem is trying to stop pushing myself to do things. That's a major issue with me, I'm afraid, and I suppose I really should go with it, but yeah, I suppose the way I was brought up was different. Well kinda carried on with stuff even if we were... Well, yeah. That's the problem. Getting out of that old paradigm, I suppose.

    I suppose I have pushed myself to the very extreme, the very limits of my health boundaries. And to be honest with you, it was not worth it. Trust me, you can push yourself far and then you can push yourself that little bit further. And my God, you will pay for it. I know I have over the years. So, when they say, "Work sets you free," well, for some people, yes, work does set you free, but unfortunately for some of us, work cannot ever set us free. More is the pity, to be honest with you. I suppose the point I'm trying to make is never overdo it. Always know your limits and know your limitations as that's when all the accidents start to happen.

    Yes, I know I've been there. I have had many accidents due to my stupidity at believing I could still do what I used to be able to do. When I didn't have this MS affliction, or was as bad, I've managed to break every toe on my feet and big toe toes. I've managed to break both my shoulders. I've managed to brake various bones over my body falling into things and whatnot. I have managed to rip muscles off bones. I've badly sprained, pulled muscles. My God, I have hurt myself so badly. I even ripped all the muscles off my left hand side. I was trying to lift something too heavy. I learnt my lesson, trust me, many years ago. All because of my own stupidity. All because I thought nah I don't need a stick. Nah I don't need a wheelchair. Nah I'll be okay. Yeah ha ha. Famous last words I can tell you that.

    Because I was in the old mindset, not my new mindset that I have had for the past year or so. Yes, people, I changed my total mindset. My old mindset was destroying me and my life. So, yeah, a total change of mindset at 66 and retired. Well, it may have taken that many years, but it was certainly well worth it. If you can't handle the fire, don't jump in the hot frying pan as they say. Or as my dad would say, "That'll come right. It'll be about right," he say.

    So last year was a real eye-opener for me, losing my dad and my mum. That was quite a mindfuck. That's for sure. But there we go. And yes all the family that said oh we'll keep in touch with you and all these words of niceness how long do you think it lasted well. Maybe five or ten minutes that was it and then it was all let's put him in the cuboard and leave him there. Poor boy pat him on the head that sort of behavior from family who should really know better.

    But to be honest, I'm not really bothered by their behaviour as it's not their fault. It's just the fault of society in general, at the way disabled people are treated. I have found in my life that being disabled, I have been and am still being treated like a second class citizen, or someone who does not exist or someone who does not deserve to exist. But I can shout very loudly and I shout "fuck you, I'm here and what you're going to do about it." And then they usually back off and don't speak to me for over ten years, which is fine with me. lol

    So, yeah, people seem to think that being disabled is an easy life, but I can assure you being disabled is not an easy life at all. Having progressive multiple sclerosis and all the extra issues that I have to go through daily 24/7. I can assure you most people couldn't handle a week or even an hour in my shoes. So, yeah, you know, people who want to judge me, people who want to not understand what I am going through, my issues, how I feel. Yeah, people don't think about that, do they? No. People don't think about the other person's feelings. They just go and they just fuck themselves with their stupid, outdated views and moral compass.

    But the great thing is, having my own blog, I can have my voice heard by others, who also have some of the same issues that I go through. The killness isn't just multiple sclerosis, it is a kaleidoscope of other illnesses. I will get the AI to put in some of input here, I think, about that.

    Here’s a concise list of chronic illnesses that often co-occur with or are similar in impact to multiple sclerosis (MS). Use these to illustrate the “kaleidoscope” of conditions you can face:

    Neurological autoimmune conditions: neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, chronic inflammatory demyelinating polyneuropathy (CIDP), myasthenia gravis

    Autoimmune diseases: lupus (SLE), rheumatoid arthritis, Sjögren’s syndrome, Hashimoto’s thyroiditis, Graves’ disease

    Chronic pain & fatigue syndromes: fibromyalgia, chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

    Small-fiber & autonomic neuropathies: peripheral neuropathy, small-fiber neuropathy, postural orthostatic tachycardia syndrome (POTS)

    Gastrointestinal chronic conditions: Crohn’s disease, ulcerative colitis, celiac disease, irritable bowel syndrome (IBS)

    Endocrine/metabolic disorders: type 1 diabetes, adrenal insufficiency Respiratory chronic diseases: asthma, chronic obstructive pulmonary disease (COPD)

    Cardiovascular chronic conditions: hypertension, chronic heart failure Kidney & urinary: chronic kidney disease, interstitial cystitis

    Skin & connective tissue: psoriasis, eczema, systemic sclerosis (scleroderma), Ehlers–Danlos syndrome (hypermobile type)

    Mental health & neuropsychiatric: major depressive disorder, generalized anxiety disorder, bipolar disorder

    Neurodegenerative disorders: Parkinson’s disease, early-onset dementia Blood & immune: chronic Lyme disease (post-treatment Lyme symptoms), chronic infections (e.g., HIV with long-term effects)

    Others commonly overlapping: migraine (chronic), sleep disorders (insomnia, sleep apnea), chemical sensitivities/mast cell activation syndrome (MCAS)

    thanks Ai for that.....

    But when you do look at that list, it is to say the least absolutely stunning mind blowing. I have a few of those issues on the list...

    Still, let's hope that you made some sense of all of this. I don't know if I did or not. Still wishing everybody healing, love, light and peace. And yes, no matter who or whatever you are. No matter wherever 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

    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
    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

    Hello fellow humanoids So, a massive update. I have been looking on a certain website, and I have seen some four wheeled trolleys of death that will do eight miles an hour, which claim to have a total average speed of up to fifteen miles an hour (not in the uk ) only if you live in Europe, and can cover twenty to thirty miles on one charge. How amazing is that! And I can get credit, and that means I won't need to use an expensive van. And yes, saving money! Oh the joys.

    So in my world with limited resources and money, it makes total sense. The three-wheeled trolley of death has nearly killed me quite a few times, being as it was very cheap, and my god, I had some near-death hair raising experiences on this accursed machine of three wheels. So I go forward looking to get myself a four-wheeled motor mobility scooter that will do the business, so I won't fall off or do something stupid. Look at all the places I can go to. Yes, the only thing is I don't like the colors they come in. Damn, that must be awful for me, mustn't it?

    I like the idea of black. Uh but no, it's not going to be black. I don't like the idea of silver. No, silver's not me. Blue. I do not like the color blue, so it's gonna have to be satanic red, I think. Yes, I think it will look good satanic red. Yes, just imagine satanic red on the roads of the southwest, motoring along at eight miles an hour, with some satanic music playing out of the speakers as people watch the weirdo on his trolley. Oh what an amazing sight to see in the streets of the southwest of England on a Sunday afternoon...lol

    It's all very well having a power chair or wheelchair that does four miles an hour, but they're not very good when you try and take them out. They're great for hospitals, doctors, even going to shopping centers. But you know, when you want a bit of independence and you just want to go out there and just get some well air, I would suppose to say the hair blowing in the wind experience would be if you weren't near a wind tunnel. But there we go. I must say that freedom allowed by this and the distance will be amazing. And if I put my tin foil hat on and think, well, if they have 15 minute cities, a mobility scooter would be perfect for a 15-minute city, wouldn't it? I think so. Oh, what a complete blast.

    I can just imagine on some of my worst days when I have brain fog and and I'm spasms and in chronic fatiguing and being totally out there. I don't think I'm even capable of getting out of my own bed, yet alone getting into a power chair. So yeah, it's gonna be one of those things that I'll be getting probably on HP, but it's one of those things you have to think about for a long time because you know what it's like, you may think about it now, but it might take a year or two just to get it into motion, that is, because you know what it's like when you think of something and then you can forget about it, or things change in your life, and well, there we go.

    Still it's now Monday evening and Dora Well Missy Dora has been yowling all day. I cannot wait until next week when she goes to the vet to be spayed. This is her first season, and my god, I have never heard anything like it. If I'd have realized she was practically Siamese, that would have made me think again, you know. But the other cat, Tiggy Gilbert, she's in season as well, and she's as quiet as can be. They are like, well, there we go. Still I suppose it's fun. Anyhow, there we go.

    Still sending everybody peace, healing, love and light.no matter whom 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
    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

    sorry I screwed up and deleted this blog post lol a re post from yesterday

    hello fellow Humanoids So it is Friday lunchtime, and I got back from seeing the machine of death at the chemists, and I went on my three-wheeled scooter of death, the approximate one mile to the chemists shop to get my prescription from the machine of death. In the end i gave Albertine the number because i didn't want to go near it because it starts worrying and buzzing and start saying things like go away we don't like you because you're weird. In other words, the machine is one of these machines that has a life of its own, as Albertine found out this morning.

    I must say the staff at the chemists are very good But this is the third time in a year that we have had the wrong prescription medication given to us from the machine of death. Yes, there you are, you'll get home, you'll open the package, it's got your name on it and inside are all these other packages with other people's names on. And this just won't do. And the chemist now drives to the house to pick up the said items. You know, we will look into this, but how many more times has this mistake got to be made before somebody tragically, unfortunately, somewhere has a horrible accident?

    Because that's we all know when you're my age and you wear glasses and things are a bit fuzzy sometimes you can't always read properly. And sometimes you can make mistakes and sometimes you can take the wrong medications and fuck up really badly. Still, at least all that got resolved very quickly, I must say indeed. And they were very apologetic.

    I woke up this morning at 6 and my body felt like hell and I knew that I had to force myself to do something otherwise I would just lie there for the whole day feeling sorry for myself As you know when you wake up that's the worst time because then the body starts to totally kick in. So everything happens at once. Spasms, brain fog, the whole lot. bowels, everything. It's like a volcano and an earthquake all going off at once. God knows what my poor neighbors must think with some of the sounds and noises that I make early in the morning and during the night as I seem to be at the moment talking a lot in my sleep which is slightly funny.

    I knew that I did not want to do a thing today. I just felt like complete shit. So, I went and I had a shower and had my breakfast and decided I am going out no matter what. The only thing that Would really stop me would be rain, snow, or a massive lightning storm. As it was, the three-wheeled beasts turned out to be very slow. We had a headwind, Albertine and myself, on our trolleys of death, and yes, you guessed it, there was quite a lot of traffic behind our two trolleys. But there we go. I find the motorists around this area are absolutely amazing people.

    And yes, you guessed it, it did rain. On and off, but we didn't really mind. It was really good to get out. It really did help. I felt so much better for going out. But of course, when I got in, I had to suffer the spasms from hell. But there we go. Sometimes you've got to suffer just a little bit just to make yourself smile. I know that might sound strange, but that's the whole truth of the matter.

    The kittens, or should I say now cats, are driving me absolutely fucking crazy. They seem to be the devils spawn. Really, we have two cats that are absolutely off their rockers and then some. Missy Dora, as we call her, she is part, well, she is a Siamese cat. We have since found out underneath the bundle of fur that she is. She's actually a... Tortoise shell, Siamese, and by God all she does all day is moan and scream. Oh, oh really, sometimes I wish, but there we go. The other cat, kitten, is absolutely bonkers, and she gets up to things that you really Don't want to know if you're eating your food.

    Upon coming back on our three wheeled trolly of death, I looked at the side of our place, and part of the roof has blown away, and I was wondering how long it would be before one of my children or one of our relatives would say, 'Oh, I see you have some things off. Let me fix that for you.' But alas, no one has offered to help me whatsoever. Yet, I remember all the times I selflessly helped people, even went out of my way to help people, and now I can't get people to help me do absolutely anything. Even if I give them beer money, it's absolutely unreal. I get the children or young adults or whomever can be busy, but surely they can spare 10 minutes just to help with two bits of tile that I can no longer climb a ladder, I can no longer use a screwdriver, you know.

    So I had a quote from somebody and they wanted a 150 quid for just putting two bits of plastic back on the roof. And I was absolutely outraged to the point where I have told Albertine she is going to have to get me a ladder and that I am going to have to practically kill myself getting up the ladder to do the job myself because that's the way it goes. You can even ask people to do the job but alas then they don't do the job properly. And that's what gets me why people can't do a proper job the first time and have to lash the job. It really does make me think and before my father died last year he said to me bearing in mind my father lived in New Zealand. He said that none of his family came to see him. None of his family helped him and he felt on his own and he felt alone and he was really really sad when they threw all his belongings away when he was in a home without asking him. He felt so fucking sad and I just know how he feels now.

    So in plain reality you either have a family who love and care for you or you have a family who love and care for you that are so busy that they can never see you. And in my case it's a family who are so busy they can never see me. So yeah, having multiple sclerosis is one of the worst fucking things that's ever happened to me. It has changed my life in good ways and it has changed it in bad ways. So yes, I know that if I was in good health and I didn't have this, I know all those jobs that I need doing now, I could have done in a few hours. But if I have to struggle, they just won't get ever done. But people do not understand that. They do not understand what multiple sclerosis and chronic illness is about. They don't realize the tiredness, the brain fog, the fatigue, and what you just have to go through all day long. And then there's all the stress and then there's all the worry. People just really do not get it. Some people should try living in a disabled person's shoes for a week and see how they get on with life because I can assure you they wouldn't last very long.

    Anyhow, that was a bit of a rant and I went off on one there. But that's honestly how I feel and if I was to tell people how I honestly feel about everything, I would be the most hated person walking the earth, I think. Because what people don't get is that along with all chronic illness there is the mental health issue and we all have and go through severe mental health issues with chronic illness that's a pure fact it's like the pain. So yeah I do understand how harsh and how hard it is for us all out there and I just want people to realize that being disabled is not fun we didn't ask to be born disabled we didn't want to be disabled but we are and we have to make the best of a bad job. So to do anything much we basically have to just suffer and suffer and a lot of us suffer in total silence without ever saying anything to anybody and that is the saddest part of it all that if you speak out your classed as a troublemaker. Empathy has gone out of the window

    And then alien disclosure turns out it was a dead cat on the table. I really thought to myself like they're going to tell us there are aliens and hybrid aliens walking amongst us. I don't think they would ever do that, would they?

    Still, sending healing, peace, love and light whomever and whatever you are out there. Have a fantastic weekend when it arrives for you, and as ever, take care and be careful and look after yourselves.

    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
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