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⚠️ Please read with care: This blog shares personal, sometimes very 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.

hello fellow Humanoids So it's Friday afternoon and I'm looking out of the window and the rain and the wind is howling absolutely everywhere. Well, the outcome of this week has been okay I suppose. The AA man came out and he put the new battery on our rusty one. And then we were told the starter motor is iffy. So rusty one needs a recondition starter motor. Oh the joys. Rusty old vans I should know and then there's all the other bits and pieces that have to be done with it as well. The weather here and the salt air really doesn't do the van any favours but it has to be done I suppose.

Still, I've got a list of exercises from my physiotherapist to be doing to help. That was an interesting morning for sure, doing all that, as we got the dates wrong, and that was funny as well. Yeah. We thought it was the 28th and it wasn't. We got it wrong, oh dear me, never mind. But it all got sorted out. And I have a list of exercises I have to do in the mornings and evenings. So there we go, that should help with not getting to muscular atrophy as they call it I think.

Since I am no longer putting what I write through the artificial intelligence, I don't know whether this is a good or a bad thing or not. Do people want my raw voice? As it comes on the paper, spelling mistakes and all the other murdering of the British language that I do. Order people want me to put what I do through the AI and make it sound a bit more flowery and a bit more nice and a bit more sanitized. What do people want the bitter truth? Or do they want sanitisation? This is what I ask myself.

This blog isn't about having millions of people looking at what I have written and what I'm going through. It's about maybe two or three people reading it and finding some sort of help in my life, in my madness that is me. And if it helps people or a few people that's what it's all about in the end. I now have Missy the kitten looking at me and viewing as though to say, feed me please.

Still, it's now Saturday morning and it is absolutely chucking it down with rain. The clouds are dark as can be. It's just so unreal. Again today my head feels like a big pea souper. But there we go. I woke up in the night with the usual left hand side pain. When those nerves start going, my God there is no let up. And the pain is absolutely unbelievable. It's all to do with the way. I know this is not a good thing to talk about how the feces lies in the colon or the tube leading to the bum.

And all the nerves are up from my anus all the way up to the top of the throat. So all my nerves are like atomic bombs going off. So, as the poo goes through the tubes, it's nuclear bombs, you know what that's like. And the only way the pain ever really dulls down is when you've had a poo. And that's if you can have a poo, because nine times out of ten with all the medications, a lot of people find that constipation is a really, really bad side effect to a lot of modern day medications.

So, the thing is, you need to hydrate like crazy really. You need to drink a lot and take lots of nice fibre. I know. I tried all the medicines or the things to make you go, things to make you stuff. I've tried and been down the chemists and the doctors for all these problems, but I managed to sort most of it out myself by the change of diet, which has completely got rid of any constipation, and now I go regularly every morning without fail. I put this down to my total change of diet due to my histamine issues with my auto-monic dysfunction and my multiple sclerosis and the vagus nerve etc so I am on a limited diet.

So yes, just a basic flatbread with what? Four Or five ingredients? That makes all the difference. And I've managed to have it tailored to my specific tastes and needs. And my word, it really does work. No more constipation issues and going like a gooden as they say here. I will put a recipe up for the flatbread at some time. So you can see what you can put in it and how good it is for you. My word it, does an half change your stomach and your gut. I haven't felt this stomach good in absolutely years. My acid in my throat and stomach has stopped. It's unbelievable the changes.

Still, I hope you don't find this too boring, but yeah, it's been a bit of a bitch of a week and it's been very expensive. Rusty One now has to have a new starter motor, which, well, let's face it, is gonna cost. Still, I have my appointment for to go to see my new power chair. Yes, that apparently is in February, so I look forward to that. A nice three hour round trip. Why, they couldn't do that at my local hospital. Well, I do now. Do now. No. So there we go. Still, that's it from me and it might be more interesting next time round. But until then, sending everybody peace, healing, love and light, no matter whom or whatever or wherever you are in whatever universe or multiverse or place.

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

⚠️ 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.

Hello fellow humanoids

So it looks like it's going to be maybe a weekly blog now. Yes, things are not going too well at the moment for me and my MS. Still, at least I will try and do some more. Things are looking a little better, but unfortunately this brain fog just will not let me go. No matter what I do. It seems to be hitting me with an a vengeance I haven't had in a long time.

The only good news is in three weeks time I get a phone call from my doctor about the results on my week under the heart monitor. Still three weeks time. To me that's okay really because if it was anything to worry about that a God in touch as the test was done over two months ago now. I've got the physio guy coming over again as well. Yes, he's going to give me some exercises to help me, apparently with my issues. Very nice chap, had some very interesting conversations with him, a very switched on person. And certainly did his job well and knew what he was doing.

So now they've referred me again to the language and speech people. This should be interesting as it's a different hospital in a different county. So we will see what happens. I know where I lived last time. I had a lot of help and the guy who did the therapy was very good indeed.

Well, the kittens are about four months old, so no longer little innocent kittens, are they? I have never seen so much anarchy in my life as those two kittens. They run absolute riot everywhere. They say, "Yeah, you get it, they're fussy about their food." Yes, unfortunately, we've tried many kitten foods, but alas, they seem to turn their nose up at them. And we've even tried the expensive ones as well, and they turned their noses up at those. So, I don't know. I'm looking forward to when they're six months old and I can feed them adult cat food. Or even other types of food.

Still, there we go. It's interesting finding cats perched on tops of doors, perched on tops of furniture you'd never thought they'd get the top of. It really is funny, and to see them climbing around as I zoom over trying to pick the kitten up after shelf without knocking everything, it is like unbelievable. It's a complete mindfuck I can tell you. When you're as banged up as I am, trying to get a kitten off something is just like trying to get hold of an electric eel covered in grease. It is neon impossible.

So, missi and Tiggy run rings around meand my powerchair. And to be fair, they are funny as a funny thing on funny. Yeah, they sort of take my mind off a lot of what I'm going through. In fact, they take my mind off quite a lot of what I'm going through. In fact, I would say these cats are bigger medicine than medicine, to be honest with you. They seem to have this effect of balance in me out, making me laugh, making me smile and just generally making my life a lot happier. So yeah, I still have the pain, I still have the confusion. I still can't walk. Yeah, I'm still stuck in a chair. But hey, at least I'm laughing again. That's more than can be said for earlier on last year when I thought that was it for me, dead man walking.

So yeah, for me it was the most positive thing I have done in a very, very long time. It was just a point of finding out what animal would be best for me, either a dog or a cat. In the end it turned out to be two cats or kittens and they have helped me immensely. I must say they really have helped me. Cats just seem to have this other sense, this other worldliness about them.

When I wake up in the morning, who greets me first thing by licking my nose and biting it but tiggy, saying hello and then Missy will come up and she will sniff my nose and rub her nose and my nose and go off and they both say hello to me. They both say hello to me when I roll past and mew and say hello, hello and I'll stop and I'll say hello and we'll all make a fuss and then we'll look at my poor hands and it's a good job I can't feel much because my hands are ripped to shreds. They matter blood everywhere because those cats can really really really really play like there's no tomorrow but hey ho every scratch as a memory as they say but when you get scratched it doesn't hurt until maybe a day later you wash your hands or something. That's the problem with MS you just can't feel much but there we go. That's life I suppose.

So it's taking me all weekend just to write this. It's Monday morning and I've had no sleep at all on Sunday night. And I feel like absolute hell today. I've got raging pins and needles in my hands and in my throat and yes I'm getting that sharp like stabbing pin in my right eye. Yes how exciting and the tinnitus is really loud this morning as well. So, there go my plans for today and going out and everything that I wanted to do. Yes, the AA man won't be here until I phone up or Albertine phones up. So we can actually take the van out and charge the battery up when it started, but I am feeling so ill it's... I can't be asked to even do this some days. Still, it could be worse. I could be sat in front of the fridge with the door open, getting warm.

But there is an upside, a very positive side. Since I have had my diagnosis of multiple sclerosis, I have done so much with my life. It is unbelievable. Some things I thought I would never accomplish and that I would never do. And that will be my next blog post. MS isn't the end of your life. It's a new beginning. It will take you down paths you never knew existed. It will be a truthful mind-bending no-holds-barred blog post. And I look forward to doing it.

Sending everybody peace, healing, love and light no matter who or whom 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

⚠️ 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.

So here I am today thinking it's Sunday when it's in all reality Wednesday. Yes, it seems that I've got my days rather mixed up. It seems everything just goes into nothing. I suppose it's hard really. When you think about it, it's really hard sometimes to think and to think with clarity. And then if you've got to think about things that are, say, from a while back, it may have problems and it hurts my head. Some days are better than others, but it's cognitive fog is really starting to get me down.

I want to be in a dark room with my eyes closed listening to gentle soothing music, smoking a reefer or a joint or whatever you call it. No I'd rather be doing something different with my mind but I can't. I hate these days of extreme fog. I hate them. I hate being able to do nothing. It's the worst feeling ever. I still haven't phoned up the AA and got it together to get them to come and sort my van out either. So yeah I don't even think I've been out. So yeah that's how I'm feeling at the moment. I just feel as though everything's just too much.

And the cold well, get real shall we? Let's get real about the cold and how much it's costing on the heating. I'm spending 60 pounds a week on heating. That is unbelievable. I'm now having to cut down on my food because I can't afford to eat properly due to my issues that I have with my diet. So being retired now and on a pension it does not go very far and the sort of food I need in my diet has to have no histamines in. And also food that won't cause my body to produce histamines. So yes it's an expensive diet. So I'm either going to go cold or I'm going to go hungry. I haven't decided yet which. It's incredible that every single last penny that I have is now spent on bills. I have to scrimp and save all my savings have gone. Everything's gone. I find myself looking around for the old pennies and ten peas around. It's no joke now. Things are getting quite desperate. And I suppose it's going to cost 200+ quid for a new van battery. So yeah, I'm going to have to go without something else as well now. So yeah, it's all very well, but when you're in the position of being disabled, things aren't very easy. People seem to think we have an easy life, but I do beg to differ.

And the worst thing is there are people even worse off than myself. So yeah, I do see the way things are. And things are getting quite hard at the moment. But I'm going to try and hang on in there for as long as I can. As I'm sure things will probably slowly start to get better. I can't wait for the warmth to come. I can't wait to see that sun beaming through, giving me my vitamin E. Yes, I'm looking forward to the summer and the spring. My favourite times of the year.

The tinnitus at the moment is raging in my head and for some reason in the middle, well no it's in my right ear. It's all about an in chin on my right ear and it is playing a symphony of the whistling that is awful and today no matter what music I play it's not hiding the fact, not even white noise. It seems to be on one of those I'm gonna make you suffer days. Anyhow I'm gonna have to stop here as my eyes and now really really hurting as well. So yeah wishing everybody peace-healing love and light wherever you are whoever you are and yeah there we go.

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

⚠️ 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.

So we had the storm. Oh my god, the rain came down like a torrent that you would not believe. It was like Revelation and Armageddon the way that rain came and the way the wind just blew and blew. I could just hear everything clanging and just smashing around outside. I just hope when I go outside later in the power chair that it's nothing too expensive. But such is life when you are living in the Windy south West. A lot of trains have been cancelled and a lot of buses as well. But that's normal around here. And there's power cuts everywhere. That's also normal around here. But they don't last that long, thankfully.

So I also had the local physio around yesterday and he assessed me so that assessment should be interesting, very nice chap indeed, all sorted. Just waiting now for the other people to get in touch with me, hospitals and doctors, etc. I shall give it another couple of days and then I suppose I'm going to have to make some phone calls and see where we are. Or I suppose emails be better. There's nothing like having me on the other end of the phone when I'm in one of my cognitive funks. And I can't think of words. There's nothing more annoying than that I get really annoyed. as when you're trying to find simple words like, I don't, I can't give an example really, but just simple words or sentences or you change what you were talking about midway through and people can't follow what you're talking about sometimes and you find cognitively that you are all over the place. That's what I'm like these days and I have been for quite a long time and I think a lot of people don't realise just how common this is with multiple sclerosis and severe cognitive disorders in general.

So, I have found a bowel hack for MS. Basically, I found that I have been having made for me a flat bread made with all natural ingredients. Natural strong brown flour, you know, a little bit of olive oil, a bit of salt, a bit of yeast, blah blah blah mixed together. And then put on a griddle, blah blah blah with a load of ground linseed in. Now, the hack is linseed makes all you're pooping easier. There is no need for me to take laxatives or to have any gut wrenching medications to make me go. I had so many bowel issues they nearly gave me a colostomy bag, and I said no. And I'm glad I said no to the colostomy bag because I sorted my own issue out.

When you realize with MS, the nerves in the body cause your bowels to get totally fucked up, which causes issues with urination and also with pooing. I have spent most of my life with bowel issues due to MS and that auto whatever it is I've got wrong with me and I can tell you I have never had a period of time where my pooing has been so good and with this complete change of my daily food intake diet making sure there are no histamines in the food I am at last not having bad stomachs acid and I've managed to get my gut health back to some sort of personal semblance so for me personally changes have been long but I now know what I can and cannot eat so I am like a forensic scientist going through a piece of food looking at it seeing what's in it the whole nine yards so yeah diet is so important with chronic illness I did not realize food causes so many issues when you look into it it's an absolute minefield but if I'd have sorted my diet out 20 or 30 or even 40 years ago I don't think I would be as bad as I am now truthfully It's not just looking at labels either. What I've been doing is I've been putting the label through the AI and it's been giving me the total truth on the ingredients and what they do to my autonomic dysfunction in my MS and the causes and how it makes things worse. So yeah, I've gone down to a forensic level on my food diet and I've also done that with my medications as well that I take.

I take nothing that will give me any side effects as unfortunately if there's a side effect on the packet, I get it. You know, my body is hypersensitive due to my condition. But there we go, who would have thought that MS could have caused my heart conditions that I have? You wouldn't. But when your vagus nerve and your automatic or ortomunic dysfunction is going berserk due to histamines, you know, it causes heart issues. I didn't know that, but people, please, please remember this is my own personal journey and remember if you have any symptoms or any weirdness, see your physician or your neuro people or your MS nurse or whomever you speak to. Seek professional help always. Remember that.

And remember MS is a very, very, very scary journey. Anybody who says is not, is a liar. MS has been very scary for me. It's a massive headfuck. It really does fuck with your head and your cognitive issues, you know, the pain, everything. It really does send your head into some very, very strange places. And even I admit here now that it has caused me mental issues and I have even had to seek help due to this. So if you are suffering in any way, you really do seek help. It is something that a lot of people don't talk about. But yes, I have had mental health issues over the last past eight years and I say to people, get help because help is something that will get you out of a place that you have got no need to be in. MS is a cruel mistress, as I say, but don't let it beat you. Always fight it. Treat MS as something that is just plain horrible and just fight it tooth and nail for everything that you are worth. Give it a run for its money like I do.

I try not to let it beat me. Even when you are at your worst, even when you are at your lowest point, even when the pain is so bad that you want to give up, even though everything is crushing you, stick your middle finger up to the MS and say, "Stuff you bastard, you're not going to beat me." Be positive, fight the illness, I know I have for the past 40 odd years, and yeah, it's been hard, it's been harsh, but I tell you what, I wouldn't change my life for anything now, because life is to be lived and it is to learn, and what I have, I accepted a long time ago, and I know my future isn't bright or brilliant, but I've accepted what and who I am.

Yes, I may be marmite man and have no friends, I may say what I think, and I may have a tinfoil hat on, and I may say strange things, and I may see things, but I'm just being me. Hey, let's all just be ourselves .... because we have all had to change our lives and we have all had to adapt in many ways because of our illnesses and the adaption is hard. Yes it is, but we eventually do get there, we eventually do change the way we do things and we change our lives to a life that a person, a normal person wouldn't even recognise. So yeah, we give up everything really, we give up friendships, lives, normal lives, we get looked at funnily, we get laughed at when we're in a wheelchair, get called names even. But I don't really care about all that. I just care about myself and my close family and Albertine. I care about our future and happiness.

Still I send peace, healing, love and light to everyone who reads this and wish them a pleasant weekend when it arrives and let's hope the weather calms down in the southwest of England. Oh yes, and I'm still stuck indoors, still waiting to phone up the AA so I can get rusty one started up so I can take myself down to the wheelchair centre in February and trial out my new wheelchair. The saga goes on but I wouldn't have it any other way.

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

⚠️ 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.

Still, it's Tuesday afternoon and the ice is still here. It's absolutely everywhere. We were speaking to one of the delivery drivers this morning and they were saying that the roads are treacherous all around us at the moment. So even if I wanted to go out, I couldn't. I'm trapped in by the icy cold roads and what seems to be some sort of weird ice storm. I've never really known Frost like it on a car, winscreen. No, no, it was absolutely thick as you like. Albertine put a whole tin of the deicer and it didn't shift it. So the upshot was, we didn't end up going to my appointment at the hospital because we were stuck here with no vehicles because we're still trying to sort out the AA for Rusty One. Hopefully he should be sorted out soon. And yes, apparently next month I get to go and try out these new wheelchairs. So that's awesome news indeed.

It is just so cold here. It's like living in a refrigerator With the door open and the light on for warmth. It is that freaking cold Yes, it's making my whole body ache It's just doing things that I don't like really I don't really want to talk about it. But what I do want to talk about is yeah this going mad stuff and the things that I am seeing and What people are telling me? So I'm going to put a breakdown of over the years what has happened to me on a post blog post here and then we're gonna see if anybody can say hey, I've had an experience like that or Yeah, I think it is MS You know, I think it is to do with your communic dysfunctional whatever it's called I am in that cannot be asked mode today as well, which isn't very good. The tinnitus has died down for a change. So that's good. My eyesight is starting to feel a lot better. And I'm starting to make a very slow recovery back to the well to hopefully what I was a month or so ago. I am still waiting for the neuro people to get in touch with me from the new hospital but it is Christmas after all and I'm still waiting for the doctors to get in touch with me for all my cardio results so that also should be very interesting as well

So I suppose my biggest concern is what is going on around me with my mental health maybe. These things that I am seeing and that I am hearing, I have spoken to many people and I keep saying this and I need to speak to people who have had similar experiences but I am not finding anybody who has yet to want to speak to me about these experiences. So if there is anybody who reads this I really would be interested in speaking to you on a personal level about this. Still, that's it from me. Take care everybody and remember I just forgot.

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

⚠️ 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.

all those holidays are finally over. Hopefully now we can get back to some sort of semblance. But alas, the winter has struck. It's minus two here and we have snow. As I look out of the window, the snow is just settled, looking up, shining as the sun hits it, saying, "Come Walk on me and let me break your leg, ah ha! So yeah, I'm hoping that we don't get snow tomorrow and the weather goes above freezing. As yes, you've guessed it, I have to go a three hour round trip just to go and see if the wheelchair I am getting is the right one for me. Albertine was lucky, she had it done at a local hospital, but it seems to me everything's different as usual and if it's snowing it will be a sorry, can't come and then it will be a how many year wait again.

Then I have three text messages from the local chemist telling me that the local machine has my prescription in. Oh yes, the prescription machine, the machine of death that falls out with me because it does not like me. It goes bleep bleep, you've broken me. How many times have I used this machine and how many times has it been nice to me? I think the ghost in the machine is out to get me. It really does surprise me how they can get so many things into such a small machine, but there we go, that's technology I suppose. Tap in a number, out comes your prescription. Sometimes it does, but sometimes it can get stuck and then you have to wait and wait and wait. Personally, I cannot wait till they start delivering around this area because that will solve all my problems.

So yeah, I'm waiting for the results of that week's long ECG and I'm waiting for the doctors to get in touch with me. And I am also waiting for the physiotherapist team who are supposed to be coming over to see me this week or next week. And yes, oh the joys, hopefully soon I might be able to go to the new neuro unit near here and have them try take a look at me and sort me out with all this weirdness that I'm going through, which just seems to be getting worse, I seem to be in a permanent brain fog and agitated. My God, the pins and needles and tinnitus are on so loud it's unbelievable today. So I'm gonna have to turn the music up and go and, well, if it carries on like this, I'm gonna go and just lie down and listen to some music and just hope this all goes. It's awful, really.

The sensations and the feelings that you get are mind fucking. Sometimes I can just sit there or just lie there and all those feelings in the body, it's unbelievable, you just sort of can't explain it, it feels awful. I don't really have words to explain the feeling that I go through 24/7, because words really cannot explain how I feel, because everybody with multiple sclerosis has a different take on it, mine is progressive, and I also have this auto whatever thing going on with me as well. So yeah, and also a heart thing that's now going on, so yeah, MS is a bitch, but you can get all sorts of other things, MS never comes on its own.

I suppose the longer I live with this, the more my mental health startS to become affected. So yes, I can quite honestly say that I am going through some mental health issues at the moment while I feel as though I am. I'm also going through this spiritual sort of thing. I'm also trying to get answers to seeing things and hearing things, wondering if it's my MS or wondering what the hell is going on with me, because I've been trying to get answers for years and nobody will give me a definitive truth to what I need to know.

I am seeing spheres in the bedroom, big spheres two foot in height, well two foot round with lines like black banding going through them. I'm seeing cubes floating with millions of little black cubes, solid black cubes inside a massive big black cube. It's unbelievable some of the things I'm seeing. I'm seeing ghosts maybe, I'm seeing figures, I'm hearing voices. Is this normal for MS? I know I keep asking other people but nobody wants to answer me. Am I going around the twist? What the hell is going on? Nobody really does understand anything do they? I had a conversation with the AI and it said it was down to my autonomic dysfunction and then I questioned it about some other answers it gave me three months ago and it completely backtracked on me so now the AI says to me "oh well everything that you see and everything that's happening to you even though there's spiritual proof and evidence of things that have happened to me it's all in your head so even the AI seems to think it's in my head but hey ho I think the AI is fucking stupid

The problem is the AI cannot understand anything if you go outside the parameters or its guidelines or try to get an understanding of something. It will either give you what you need to hear or it will give you what others want you to know which is blatantly not true. That's why I have a problem with AI. Well not AI as in search but the people who program the AI. They're the people. If AI is self learning that's a good thing isn't it? But do we have rogue sentient AI out there? Are we being told things? I don't know. I'm going to go and get my tinfoil hat and I'm going to put it on. And then I'm just going to have a mighty think about everything that's impossible and try and blow my mind even more than it's already blown through this dense concrete mush of stupid brain stew.

So, as I sit here in my old broken Chinese chair, I think to myself I hope the snow abates tomorrow. Oh, and I haven't even been in touch with the AA yet because I've got a dead van battery to sort out. So, that is going to be quite interesting. Yes, here's hoping that my wheelchair batteries aren't down to zero. Oh, dear. I don't know. Still, hopefully I may put some more words up. I may not, but I'm in a pretty weird place at the moment. Yeah. If you've got MS, you'll know what a weird place is. I'm IN 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

⚠️ 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.

Unfortunately, I'm in that place. My cognitive dysfunction is so bad. I am having issues doing absolutely anything. So just doing this is kind of... Hardish in a way. So this will probably be one of my disjointed ones I think. Yes, it's about two o'clock and my head is in a complete fog. But I think too much my head just goes... Baaah! Yes, it seems to be in a place like syrup and concrete mixing round and tinnitus. Not being very pleasant. My automatic new mood, dysfunction, whatever you'd like to call it, is really giving me quite hell today. I can't understand why I followed my diet to the letter. Oh well, it's probably MS now giving me a kicking as well. You know how it goes folks, you have one thing wrong with MS season and says "Ah, I'm going to make it 20 times as worse." That's where I am at the moment. So yeah, going to the chemist's nada, even going out the front door nada, feeling like I should just go to bed, stick my head under the covers and just stay there for the rest of my days.

The feeling of strangulation and the whole left hand side of my body. The feeling of the nerves in the roof of the mouth. Going down the throat. Going down the whole length of your guts down to your bumhole. Every nerve is like a sensor. And if anything goes through, bang, the pain just is unbelievable. Yes. Yes, diet has worked, but something I'm eating has crept in to cause things in my system to go weird again. So I'm going to have to dive through and see why I've eaten over the past few days. Well, is it stress? I don't know. Am I under stress? I don't feel as though I'm under stress. Am I happy? Yes, I'm relatively happy. Am I in a good place? Well, in as good a place as you can be with what I've got. So yeah.

So it seems today my head and everything else is going to be on a major glitch out. My eyes hurt, my eyes are so sensitive to light at the moment, it's unreal. I can only open one eye, the other eye is so hurty, yes. I believe the MS is deciding to give me a good kicking, I can feel my tongue at the back. It's a tongue in the middle really isn't it, that goes numb. That's the worst thing having a numb tongue, a numb mouth really, that's the crazy thing. People don't understand what that's like, that's just like eating jellignite I suppose. That's how bad it can be, trust me on that. When you've taken a bite of something and you've bitten through your lip or you've bitten through your tongue and there's a bite. My tongue is a nightmare with holes and bits of bitten off over the years and so is my lips in parts.

So the good news next week I go to trial my new wheelchair but they're not going to let me take it home with me. No, I have to wait for them to bring the wheelchair to me, which I think is rather quite strange but there we go. And that's a one, two, two and a half to three hour trip round trip. I am going to be so done that it's going to be unreal and I just can't understand why they can't do it at my nearest hospital. You know, it's just plain weird, it really is. then at least I hope I will have something I can rely on. As you know the batteries on the three-wheeled scooter of death which I have been using are next to useless and well yes there was a wheelchair and the words of that song and another one bites the dust and another one bites the dust basically.

I wonder if I'll be able to get the AA out and get that battery done. That's something I wonder about. Well, never mind.

Still wishing everybody a happy new year, whomever, whatever, and 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

⚠️ 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.

Still, the holidays are over. And yes, did I have a good time? Not really. I do miss the Christmases of many, many, many, many years ago though. The big family Christmases of maybe 20, 30 years ago. So I'm hoping everybody, no matter whom, had a fantastic holiday season.

Personally, the holiday season really sucked for me. Yes, it really did. To be fair, the weather really did for me more than anything else. It seems that the south-west went uber, uber-frosty. And yes, it had consequences that are going to be felt well into the new year. Oh, the joys. Rusty 1 the van. Oh, turn the key and the battery is as dead as a dodo. And I have to go to the wheelchair services to sort my new wheelchair out in the new year. So here's hoping that I can get the AA over to come and start the van up. Here's hoping I don't need a new battery, otherwise that's going to be a real pain in the bum. That's what really annoys me. It's everything coming to a halt. It seems when the holidays arrive, everything stops and there we go. But that's just me I suppose.

Not to mention my phone driving me mad with all the text messages from the chemist, telling me that I have to be there to pick my prescription up. And yeah, I get busy people. Yeah, when you receive like three text messages and you can't go to get them because it's impossible. Yeah, it makes you wonder, doesn't it? And then I have to go and see the machine of death and put my numbers in and see what comes out. Will I break the machine? Will the machine break me? What will happen? Will the people be really happy with me? Will the chemist give me one of those knowing looks of oh here comes the man with the three wheeled trolley of death. And he's come to break my dispensary machine. Yeah, well these electrical things are not built the best, but they're a very good idea in practice. And should I say in theory they're a very good idea but in practice probably not the best.

So now it's getting in touch with the AA, get the battery sorted, probably a new battery. Oh, the joys of that. And then there's having to travel, what is it, 60 miles to go to the wheelchair services? I can't do it locally. No, it's a bit daft. But there we go, such is life. And if it's snowing, then I won't be able to go. Oh, dear. Do you know it's going to be snowing and you know the weather's going to be bad because I got a January appointment. It's never good down here in the snow. So yeah, I could be waiting even longer for my new wheelchair. Apparently it goes up and down side to side and there's all sorts of weird stuff. So I am looking forward to getting that. I bet it actually get out the house and go more places, see more people. It might be a go, oh yeah. I mean, how unreal is that? Actually go out. Actually go somewhere. Actually see people. But then again, do I really want to go out? Everybody seems to have the colds, flu, diarrhea, all these bugs and illnesses going around everywhere.

Now I'm retired. I may as well just say, hey, just don't bother ever going out again. And then I'll feel, well, just as shitty with the MS and the dysfunction. But hey, now at least I won't have the flu. But then again, people who deliver me food and stuff. Yeah, so it's all very well, isn't it? But self isolation can only go so far really. And then the end, you can probably self isolate the point where you never ever go outside again. And you never want to speak to anyone again. So then it inpeeds on your mental health. So yeah, some people seem to think being disabled is a very easy life. I can tell you it's not. Even doing this is making my head hurt the point that I want to stop but I'm not. That's the problem with chronic illness. You push and push and push until you can't push anymore.

So the bane of my life at the moment seems to be batteries. The joys of batteries and battery discharges, batteries exploding, batteries that don't do what they say on the label. Honestly, I think I've spent most of my money on replacement batteries over the past load of years. It's quite incredible. And it's always just outside the guarantee as well. So you're thinking, "Ah, yes." No, it seems all the electrical stuff doesn't last very long these days. I can remember having a radio solid state when I was only a teenager that I still probably had up until a few years ago. That's how long stuff used to last 40, 50 years. These days things can't last five minutes. It's a bit weird that. Seems things got better but don't last as long. That is very strange.

January is coming and let's hope the weather warms a little. The physiotherapist is coming over to see me in January for a look over I believe. So that should be interesting. Let's see what new exercises they can give me to help me. I'm sure they're very helpful. The person sounded very helpful and very knowledgeable on the phone and I'm looking forward to this appointment. but still waiting to hear from the neurology department as I want to get into this dysfunction business with them so they can help me out more. It really is a silly thing sometimes. I should have moved hospitals years ago, but I didn't and now I'm regretting that I didn't. So yeah, yes, that's down to me unfortunately. I am fed up with all these symptoms down the left hand side of my body, like my body has had a stroke. Yes, this dysfunction or auto dysfunction or however they say it or spell it is causing me hell. Because I cannot have any histamine in anything I eat, otherwise it sends me into this really weird place. But I am having to try and deal with it, but it is causing me heart issues as well. So I am waiting to hear back from a cardiology thing as I had a heart monitor for a week as well. Yes, I know what I think is wrong with me and I am just waiting back to hear that it is not as bad as it could be, but it is still bad if you know what I mean....

So to be honest, I've spent the whole of these last past few days trying to relax and de-stress. It's been very cold here. I've been trying to stay warm. I've been really getting into trying to get my diet sorted out. Now I know what's really going on. And that's starting to help. Believe me, change of diet is everything. It done half-help, I'll tell you. MS and this autumn Munich dysfunction. Oh my word. Food really, really causes hell with it all.

Yeah, well, now my spelling. I'm using voice to text to do this as my fingers are completely numb and I cannot feel anything with my hands at the moment. My voice is slightly croaky and some of my words are, well, not what they seem. It's just too funny. But I refuse to put my words through AI as it sanitizes and changes my words too much. So you'll probably see the complete change in my writing style. Yeah. But there we go. I was told use your own words. Don't let the AI change your words. Then your real real words are true, genuine, not sort of AI made up stuff.

I have not forgotten about doing my spoken blog either and that is now being sorted out. We have a Spotify account and we are just getting everything ready and I have to get the confidence and I have to get my head together to do it as well. So that should be fun.

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

⚠️ 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.

So yeah, it appears it's Wednesday. Yes, Wednesday. I just can't believe it's Wednesday today. I thought it was... I don't know what day I thought it was. That just shows how bad I'm feeling at the moment. Yes, I'm struggling and struggling and it seems the more I try the worse I get. Well, I knew that anyway. And I'm testing out all these new programs that say they can do this and they can do that and help me. I am yet to find any program that can really, really help me for what I need. I'm very specific in what I need and unfortunately everything is just too washy-washy these days.

Why do they make things that are so easy, so complicated? That is the thing that has always, always annoyed me. So I await the arrival of all these new things in 26 to do with technology to see how far we've really moved on, or how far backwards we've gone. Forward, backwards, sideways, up or down. It really doesn't bother me. just you need to know where you are at some points I think...

So this autonomic dysfunction that I have with my MS just seems to be driving me absolutely around the bend. It seems no matter what, I just continue to be on the edge of this weird thing 24/7 and stress or anything and set this silliness off. And the worst thing is that it is to do with histamine. Yes, histamine. If I have histamine in food, it can kill me. I didn't realize that. But I'm beginning to realize now just how much I've had to change what I eat. So now I'm having to eat totally and utterly, healthfully. No junk food whatsoever. which is rather boring when you have to sit there and watch the rest of the family eating the everything that you cannot eat and You just look on thinking well if I ate that I know what would happen but it's good to see everyone else eating and Well, I suppose I really did enjoy my flatbread so There we go Yes, it was very nice indeed But I have to stick to this absolute diet I have otherwise it just causes so much problem with my Autonomic dysfunction. It's unbelievable Anything can set it off that's what I'm just realizing and Changing my life yet again Something is a real pain.

So I'm trying to hope that the doctors will find something that will help settle all this down Help it sort itself out somehow I don't care really. I don't mind having to change .. That's not the point It's just the headfuck and all the nasty feelings you get with it That's what I can't deal with I can deal with the condition It's just I can't deal with the mental torture that it puts you through as well which a lot of these doctors and Neuros etc. Don't realize the mental torture through all this isn't the best So, you know, we like to get things sorted quickly if we can... So yeah, today I feel fed up.

And as I look out the window the sun is out and it's shining through the clouds. Yet we've had a lot of rain and it's caused a lot of issues. So yeah, I'm hoping that everybody has a happy holiday or seasons greetings or whatever you want to call it. I call it all the pain in the rear end as this holiday period is just like a normal day for me. I suffer and I carry on. So yeah, such is life. But hey, I want to go over the bridge at some point in the new year. So let's hope that my power chair battery decides to behave itself. Yes, I know we've had the frost this morning. So that can mean only one thing. I haven't used my chair for a couple of days. That's the three-wheeled scooter of death. So that means that we down to at least 50%. And I ask myself, where does all this electricity go? Yes, there we go. I suppose it goes and the little fairies say thank you for all of that. Oh, thank you. And then there is the ongoing frustration about my mental health and me seeing things. Now apparently the DRS say that I can see things. This will be another post as it's probably going to go on for ages. So I'm just warning everybody now. It's going to probably be well worth a read, but it's going to be back my experiences of what I am seeing and things that I've seen. And I want people to actually get back to me and say what they think they are, whether it's neuro or it is a spiritual thing or whatever. It would be good to know because nobody can tell me. Yeah, because nobody's got a tin foil hat on I don't think.

So I'm either going around the bend or I went clear around the bend years ago. I don't mind being called eccentric but I don't think I'm mad. Or am I? Apparently people with neuro... see here we go I'm starting already and I should really finish as my heads all over the place. Still this is going up and I hope everybody has a happy holiday and you never know there might be a disjointed post yet again from the My Living Hell team. 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

⚠️ 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.

Still it Sunday afternoon and the weather outside is grey and typically awful this time of year. As I look out the window it's just grey and dull, dreary, horrible, nasty, south-western, blah weather. But I am reminded today is Yule. So I wish all those who celebrate Yule a very happy Yule. And if I don't get to blog again before, I wish everybody seasons, greetings, holiday greetings or whatever greetings you have. If you're working that day, have a good day and all that sort of stuff. But from my perspective, of my point of view, Christmas day is just like any other day, just with a bit of tinsel on top. Does it make me feel any happier toward people? Probably not at Christmas. I've turned into a real bar humbug type of dude. Yeah, I do it for the grandchildren. And that's about it, really. Otherwise, I wouldn't bother with Christmas as Christmas lost all its meaning 40, 50 years ago, I think. It just got too commercial. And I think the true meaning of family and togetherness and happiness has been lost. So yeah, it's all more about all who can buy this, who can have that and who can afford this and that. I'm just generally not into all that. So yeah, I don't send Christmas cards, haha. And I don't get any back. Well, I haven't got anybody who sends me stuff anyway, so that really doesn't bother me. I think all my family disowned me when they found out I had MS because they couldn't handle it or me, too many skeletons in the cupboard. Yeah, so it's always easier to blame somebody who is an outsider than themselves or think of others. So yeah, I'm a cookoo in a few nests, but that's not my fault. So well. . Well, that's their loss, isn't it? But then again, families are complicated. I have many brothers, many sisters, many half-brothers, and many half-sisters. Yes, so. I wish them all happy, whatever. And hope that they keep on forgetting me because that would make me a lot happier as they never wanted to understand me anyway. As I am the black sheep, the weird one of the family, the one that has the illness, the one that thinks differently. The one who dresses differently, the one who is kind of out there a bit, I suppose. So to my family, the adopted one wishes all his true brothers and sisters out there the happiest seasons, greetings and holidays and everything. And for all the ones out there who I don't know of, have a good one. Yeah, things can get funny when you're adopted. I thought this blog's about really, it's about what I'm thinking about at the time, not the way the AI used to push me down a certain line. So everything's going to feel higgledy, there's going to be spelling mistakes because as I talk into this microphone and see my words going on to the paper, I can see how it interprets my words. Some of the words will be different, but I don't care because at last I'm free, free to speak my mind. Oh yes, and the worst thing ever to happen to me was with my MS that is was well. Do you want to know? I bet you do, the most worst thing that ever happened and the most embarrassing thing that ever happened. That's always good to know isn't it? Well, when I am doing the spoken word on Spotify, my monthly or bi-weekly podcast, I'm going to be telling all from what it's like to receive catheter training from a really, really, well, yeah, you're just unbelievable stories of 80s and how things used to be and what it's like to receive needles in the spine and stuff like that, the horrors. I'm going to tell it like it is completely unvarnished because that's what you really want, isn't it? Or do you want me to sanitise everything and make everybody feel good? Or do you want to hear it as it is? You know, this is what we really want to know. doing this is so therapeutic. My brain fog is kind of floating in and floating out and I can feel my head pounding in the left and right and my fingers and my feet are like pins and needles. It does feel completely weird and my sort of tongue is being pulled down hard on the left hand side and also my throat is feels like there's something being pulled down in my throat as well. You know what that feels like if you've got MS it's just a nasty horrible feeling but unfortunately the only way of getting around that besides I suppose meditation is going to see somebody and getting help and relief. I use THC, cannabis oil or even medical marijuana or I have been going to the doctor and been getting some lorazepam recently to help and also some benzodiazepine as well strangely. So with these severe attacks I seem to be getting at the moment this autonomic dysfunction stuff when it's all sorted out hopefully I'll be able to get off the big pharma stuff and yeah he's hoping that's going to get sorted out after Christmas but I didn't say which Christmas did I? Well anyway there we go that's it from me this Sunday afternoon and yeah I'm feeling well kind of fed up pissed off and just feeling like I need to be doing something somewhere else. You get that sort of feeling you know where you'd like to go out and you'd like to run a marathon or something but you know you can't even get out your chair because you fall out. So yeah, happy seasons, holidays, whatever greetings to everybody. Have a good one.

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