autonomic dysfunction

⚠️ 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 content

Hello fellow humanoids and I trust everyone out there is feeling slightly better than I am yes it's been another one of those weeks a lot has happened let's hope that you can understand what I'm writing haha as you know when I do these usually I end up having my cognitive dysfunction you know what that's like when you're staring at a piece of paper and you've lost all the words and you've lost all your train of thought and the head hurts haha

The autonomic dysfunction has started to calm down somewhat, i have modified my diet again to get rid of more histamines it's amazing that even food that doesn't have histamines that causes a reaction in the body that causes the body to make some sort of weird histamine thing below you will find the explanation from the AI as I find it very hard to find the proper words to describe all of it otherwise we would be in a fine pickle trying to understand what I've put down

Understanding Autonomic Dysfunction and Histamine Intolerance What is Autonomic Dysfunction?

Autonomic dysfunction refers to an imbalance in the autonomic nervous system (ANS), which regulates involuntary bodily functions such as heart rate, blood pressure, digestion, and respiratory rate. This can lead to symptoms like fainting, dizziness, fatigue, and more.

The Role of Histamines

Histamines are chemicals in the body involved in immune responses, regulating physiological functions, and neurotransmission. They can trigger allergic reactions and affect various bodily systems.

Histamine Intolerance Explained

Histamine intolerance occurs when there is an excess of histamine in the body or an inability to break down histamine properly. This can lead to a range of symptoms, including headaches, digestive issues, skin rashes, and respiratory problems.

Elimination of High-Histamine Foods: Certain foods are naturally high in histamines, such as aged cheeses, fermented products, and processed meats. Removing these can help lessen symptoms.

Low-Histamine Alternatives: Include fresh meats, certain fish, eggs, fresh vegetables, and gluten-free grains.

The Impact of Histamine-Releasing Foods: Some foods, even if they are low in histamines, can trigger the body to release its own histamines. Common culprits include tomatoes, strawberries, and chocolate.

The Benefits of Dietary Changes

Symptom Relief: Over time, reducing histamine intake can contribute to a noticeable decrease in symptoms associated with autonomic dysfunction. Increased Awareness: Modifying your diet allows you to become more aware of how your body reacts to different foods, fostering a more personalized approach to your health.

Conclusion

Your journey toward managing autonomic dysfunction through dietary changes is commendable. By focusing on low-histamine foods and being mindful of histamine triggers, you're taking proactive steps toward better health. Keep experimenting and paying attention to how your body reacts—this awareness is key to finding what works best for you. thank you AI

So my diet and change your food regimen has really started paying dividends again I have to be very careful and check everything I eat as my body is that sensitive even to the smells can start me off it is quite unbelievable it's taken me a very long time to get the drs to understand what I'm going through

So now I'm just waiting for an appointment with the neurologist so we'll see how that goes But on a more positive side i have been doing more and more, and I bit the bullet this week and I completely reformatted my machine that's my PC and now running Linux mint

It's taken me about four years to be truthful to fully install Linux as I was using it on a pen drive and testing it out for a while you know how that goes you can make all the mistakes and not make the system go stupid well it's in stalled on the PC now and it's amazing all the programs that are free with Linux in fact I would go as far as to say some of the programs are so much superior to those of Windows even though my brain fog is quite severe I'm able to Battle through and haven't screwed anything up yet which is amazing so yeah Linux is far more easier for me than Windows as Windows 11 is all AI and stupid haha personally I'm the Window 7 man but there we go

I have also been doing a lot of research to some of the things that I have been seeing I now have orbs on film that will have been seen regularly in our living room they are white balls of light in varying sizes floating around the room it's quite unbelievable and it's not just me that sees this so I know it's not an optical illusion or to do with my MS

So that now beggars the question these blue orbs that I see and white small orbs that I see around that are like little stars up to the size of a Sixpence they are still around and I see those a lot and I just wondered if all these orbs are connected if it's to do with some sort of spiritual thing or it's some sort of weirdness that comes from another dimension who knows lol

Because when I have asked people about what is going on with me they seem to want to placate me and Pat me on the head and say they're there it's all in your head and your imagining everything so yeah I'm going to start showing the film to the doctors and saying what is this then can you work out what I'm going through and how can I can see it there how come albertine can also see it and see them floating around so yeah whose mad then me I don't think so lol

also there was these weird other things that I've been seeing they have been called time slips or bleed overs or whatever and I did some research on this and guess what the same things have been seen that I seen in those areas in fact it seems to vindicate what I have seen so yes that is another thing that means what I saw on those occasions have been seen by other people over the past 60 plus years unbelievable but there we go and I am still doing more research But I may be lucky.

Sending everybody peace, healing, love and light to whomever and whatever you are out there.

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.

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

hello fellow humanoids cognitive brain fog edition

So, Rusty One is still in the garage. No need to worry, they said. Everything's okay. It's just another vehicle got stuck on the LIFT, apparently. So, hopefully by tomorrow, Rusty One will be back with us.

I had a long conversation yesterday with the doctor as Well, and they gave me the results of the ECG test that was strapped to me for a week, some sort of device that really, really was quite okay, wasn't that intrusive. Anyway, the results came back and showed that my heart beat is slower, which also shows some other things and apparently they have now, the doctor has now come to the conclusion that I could be right and I have autonomic dysfunction and I have told her how harsh The symptoms are you will find them listed below.

Autonomic dysfunction can manifest in various ways, affecting multiple body systems. Here’s a bullet point list of common effects: thanks to duck AI for this list

• Cardiovascular Issues

  • Abnormal heart rate (tachycardia or bradycardia)
  • Blood pressure fluctuations (hypotension or hypertension)
  • Orthostatic hypotension (dizziness upon standing)

• Gastrointestinal Problems

  • Gastroparesis (delayed gastric emptying)
  • constipation or diarrhea
  • Nausea and vomiting

• Respiratory Effects

  • Difficulty in breathing or shortness of breath
  • Respiratory rate abnormalities

• Thermoregulatory Dysfunction

  • Inability to regulate body temperature
  • Excessive sweating or reduced sweating

• Urinary Issues

  • Urinary incontinence
  • Difficulty in bladder control

• Sexual Dysfunction

  • Erectile dysfunction in males
  • Reduced libido or arousal in females

• Neurological Symptoms

  • Dizziness or lightheadedness
  • Fatigue and weakness
  • Sleep disturbances

• Emotional and Cognitive Effects

  • Mood swings or anxiety
  • Cognitive dysfunction (difficulty focusing or memory problems)

• Skin Changes

  • Color changes (pale or flushed skin)
  • Dry or excessively sweaty skin

These effects vary by individual and may depend on the underlying cause of autonomic dysfunction.

So you can guess with progressive MS that I am now really getting this sorted out will help. I've gone down the diet route, I still have it, and I suffer most of these side effects. Sickness, diarrhea, the whole lot, you know, it's just nobody seems to understand or care really. You can talk about how you feel and what's going on with you to a doctor. But if the doctor does not understand what you're going through and cannot comprehend and you cannot get the words to make them understand what you're going through, this is where the breakdown of everything occurs. Well that's my personal experience and opinion.

So what do you think I did? Well I put all my symptoms into an AI. and the AI pointed out that it could be Autonomic Dysfunction. And yes, I spent many hours going through all the symptoms and I started to do what the AI suggested and that was with my diet and as I changed my diet things started to reduce. So I've got my diet down now to the basic bare necessities. I've known for a long time it's been autonomic dysfunction, but trying to tell the people that need to know, well that's been a different matter and it has been a massive struggle over the past eight years. I do not blame anybody personally, I believe lack of communication is what has happened. So now I've had it confirmed by the doctor what it could be. They are getting in contact with the neuro.

Well of course I've changed hospitals and counties. So that's going to be fun. And hopefully I'm not going to have to start all over again. You know what it's like to begin to view when you roll in and you get prodded in, you get pushed and all that crap. Well I don't stand for that anymore. I say I'm here for that. You know how I am. You've got my records. You don't need to be prodding me. I'm fed up with it. And there you go. But I'll say it in a nice way.

When I roll in in my power chair, they will have a list of what is going on with me, typed, yes typed, on nice white paper in a crisp font so they can read, because what is the point? Trying to tell somebody something when you have severe brain fog and cognitive issues, because I'm sure with all the best will in the world, they're not going to understand. So remember this people, write down everything that you want to say to your neuro doctor or whomever. That is the best way to be, because then they can understand and then they can answer each query that you have on the list that you've given them. And the great thing is you feel so much better and your head feels so much better that you haven't had to explain everything, that it's just written down or typed down on paper so they can read and understand and then you don't have the stress and you feel so much better and so much more in control of the situation.

You see, I do use AI and I use it as a very helpful tool to help me speak to doctors and neuros now because it understands by talking to me what I'm trying to say and what I want to say to the doctor or the neuro. So it makes it in a language that they will understand. So then there is no lack of communication and there is no reason for them not misunderstanding. So that is one tool that I use in my arsenal now.

I don't use the AI when writing my blogs anymore because I found it sanitised it too much. And I thought, well, I'm going to do this raw and it's going to be all over the place, but hey ho, at least I'm trying and at least I'm having a go. So some of the information on here, I did get from AI and that was all the effects of the dysfunction. I am not against AI, in fact, I think AI is one of the greatest inventions or tools ever invented when used by the right people properly. It's all about the programming at the end of the day. And yes, it can help with all those everyday mundane tasks as well and no, I'm not sponsored by any AI company.

Still, that's it from me, wishing everybody out there a fantastic weekend ahead, sending everybody who reads this, "Peace, healing, love and light, whomever and 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

⚠️ 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 disfuction this may be a confusing read non ai content

hello fellow humanoids Well after months and months of waiting I'm going to test my wheelchair out today yes a three hour round trip but it will be well worth it rusty one has to go in the garage on Wednesday for a new starter motor and a lot of welding to be done for the MOT this year it never ends pay pay lol it doesn't matter that you're on a pension and can't afford much haha but such as life I suppose the whole past load of days has been an absolute nightmare my autonomic dysfunction got set off on Friday and I have had the weekend from hell

It's dark outside and it's raining and it's very cold indeed my body is giving me hell I am trying to stretch my legs and arms to try and get them working properly just think no more hassles I'm going to have an actual proper power chair without any hassles of the three wheel trolley of death or the other trolley that went dead battery lol

The most important thing is I will be able to get new things done that I have not been able to i'll be able to go out be able to go and see stuff for a change instead of being stuck in the van it's been a long time since I've been anywhere must be two years now it seems that I've I still have to self-isolated myself even though I'm now retired what with all the colds and flu and all the lurgies and Bugs going around lol but to be fair I Self isolate every winter as I don't see any point in making myself worse than I already am

The autonomic dysfunction came into full Force over the weekend because I dared eat some ground sunflower seeds and of course that set off the histamine reaction and it was bad it really is quite nasty to be fair here's just a few of the things that happen when you go through this autonomic dysfunction stuff So yeah, it's been quite a mad few days. Indeed, the autonomic dysfunction is getting less, but I'm hoping today for very good news indeed.

I am slightly feeling weird and very weirded out as the doctor will be ringing me with the results of my ECG, the week long test that I had before Christmas. Yes, and I'm hoping that things work out on the phone as I have my views on Whats up with me, and I just hope that they can understand what I'm going through as I am going through something that no human should ever have to go through. It's the most horrible thing I've ever been through.

So today Rusty1 went to the garage, yes Rusty1 is having the starter motor fixed and the rest of the rust taken care of. So we'll be hearing later on today how that went. Yes indeed, I'm thinking very very big bill. When is it ever a small bill when a vehicle is concerned? That's what I have to ask myself. But then again it is essential to my well being as if we didn't have Rusty1 I wouldn't be going anywhere would I? Yes I would not as I am a virtual prisoner in my own home until I get my proper power chair.

Speaking of the power chair, yes on Monday, I did the three hour trip and I have tested the power chairs that they had there and I'm getting apparently a quick 300 and hopefully I should have that within a month or so. So that was really well worth the trip but I must say as soon as I got back I was so knackered it was unbelievable. I had to go straight to bed. The old brain fog was quite remarkably bad along with tinnitus and the pain in my eye it's like a hot needle going through my right eye is no fun. Still I'm glad I didn't have to drive. Thank you Albertine for that.

So I'm sat here now waiting for the doctor to phone. Yes, I've got white coat syndrome and I'm not looking forward to the phone call and my nerves are jangling like there is no tomorrow because well, I have that Feeling of Doom as usual, especially when it comes to the doctor. Yes, so this is a bit sort of all over the place, this one, and yeah, I hope that you don't have issues reading my stuff because it's all over the place because I never know where I am. That's why I used to stick it through the AI, but it used to sanitise it too much and I used to end up arguing with the AI and that's never good for my stress levels...

I am still seeing weird stuff as well and I have been trying to get professional help and I'm getting nowhere fast. These things I keep seeing. Yes, I have spoken to doctors, neurologists and all sorts of different people and I think I'm an eccentric nut. They seem to sort of say, 'Yes, yes, sort of pat me on the head' and I copted a look at one of my notes and it said, 'As long as it keeps him fucking happy.' 'I should bloody cocco, why would somebody say that?' A professional. 'They don't know me, they don't know who I am, they don't know what I am, yet I'm always fucking judged.' I hate being judged by people who don't know me, it's one of the biggest things. Because I'm in a power chair, I dress different, I look different, my attitude's different, I am a person inside, you know. These sort of people seem to forget some people do. And to me, I find that highly offensive.

now am I a pensioner, but I'm an eccentric pensioner with progressive multiple sclerosis, and severe Autonomic dysfunction, and yeah, I'm different. And I get treated like a moron. Oh, I know, let's talk to the chair. That's the wooden chair next to me, because we might get more sense out of it. Really? Honestly. It really does piss me off when people talk down to me. Or people think that I am stupid because I am in a wheelchair or because I am disabled. Do you know what? It really angers me when people ignore me and then speak straight to Albertine about me without asking me. I am sick of it. But when you say something you are then accused of being an angry or weird person. You just cannot win. It really is a minefield out there. So in the future I am just going to refuse to say anything and I am just going to Stick to the basic facts. Nothing else. That's it.

sending peace healing love and lite to everyone

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 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.

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.

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.

Rain, Kittens, Orbs, and the Question of Sanity

The rain came down like it had a personal grudge.

Not a polite drizzle. Not that apologetic British mist that says sorry as it dampens your jacket. This was proper biblical nonsense drains overflowing, gutters giving up, the kind of rain that makes you laugh and think, Well then… water shortage this summer, obviously. Humanoids are marvellous at panicking about drought while actively floating away.

I woke around 4:30am to what can only be described as a purring industrial estate. One kitten asleep on my head. Another wedged into my neck and beard like it had taken out a long‑term lease. Engines running. Vibrations everywhere. If cats are supposed to be aloof, these two missed the memo and went straight for emotional blackmail.

Then came the inevitable.

Kitten. Christmas tree. Gravity.

Yes — the tree ended up on the floor. No — the kitten did not care. In fact, she looked smug. Decorations everywhere, tinsel hanging like festive entrails. We laughed because the alternative was crying, and crying before breakfast feels a bit ambitious.

Looking Up (and Not Seeing Much)

I still look at the sky.

According to the internet, it should be crawling with orbs, UAPs, UFOs, visitors popping in like it’s a motorway service station. I look up and see clouds, rain, and the occasional star when the southwest decides to be generous. No glowing ambassadors from beyond. Either I need new glasses or I’m simply not on the invite list.

That said, I do see strange things sometimes. Flickers. Patterns. Moments that make me stop and think, Hang on… what was that? And that’s where the internal interrogation starts:

Am I seeing something genuinely odd? Or am I seeing reality through a nervous system that’s been joyfully sabotaged?

I live with multiple sclerosis. I live with brain fog. I live with an autonomic system that behaves like it’s freelancing without supervision. When that’s your baseline, you don’t get the luxury of trusting perception — but you also don’t get to dismiss it outright. You’re stuck in the grey bit, where certainty goes to die.

The Medical Cul‑de‑Sac

I did the neurological tour. Thoroughly.

Scans. Clinics. Explanations that manage to be both technical and utterly hollow. MS can do this. MS can do that. Yes, thank you I’ve noticed. Useful, but spiritually about as nourishing as a hospital biscuit.

So I widened the lens.

Philosophy. Consciousness. Vallée. Keel. The trickster nature of reality. Not because I want to declare myself special or enlightened — but because pretending the questions don’t exist feels like intellectual cowardice.

Enter AI, Wearing a High‑Vis Jacket

Asking AI was… an experience. it tried to sanitise everything.

Dietary help? Genuinely useful. When your body treats half the food supply like a personal attack, clarity matters.

Spiritually? Absolutely allergic to nuance.

Everything funnelled straight into pathology. Everything gently but firmly steered toward “this is all in your head, dear.” Not curiosity compliance. Ask a question about perception and suddenly you’re wrapped in digital bubble wrap with a warning label.

Here’s the blunt bit: AI doesn’t think. It reflects.

It reflects liability fears, cultural assumptions, and the worldview of its programmers. Which means spirituality gets treated like a software bug, and lived experience gets flattened into symptom management. That’s not wisdom that’s risk assessment pretending to care.

So Am I Mad, Then?

Let’s not mince words.

MS makes your interface with reality noisy. Signals overlap. The brain flags nonsense as urgent and sometimes ignores what actually matters. That’s biology, not a moral failure.

But and this is where everyone gets lazy neurological explanation does not automatically equal existential erasure.

Not everything is meaningless. Not everything is a cosmic message either.

The real work is discernment, which is far less glamorous than revelation.

Questioning your own experiences isn’t madness it’s grounding. Wondering whether something is neurological, psychological, or something else entirely is not delusion it’s honesty. Certainty without humility, on the other hand, is where things go properly sideways.

I don’t claim gifts. I don’t claim answers. I claim decades of odd experiences, a damaged nervous system, a functioning bullshit detector, and the right to sit with uncertainty without being patronised.

Where I’ve Ended Up (So Far)

I trust neither blind belief nor blind dismissal.

Doctors don’t have the full picture. AI definitely doesn’t. Spiritual circles often disappear up their own arse. Hard materialism leaves too much unexplained.

Reality, inconveniently, refuses to be tidy.

So I keep one foot on the ground, one eye on the sky, and both hands firmly on my own nonsense especially on bad days.

Some days are pain, fog, and unreality. Some days are kittens, rain, and laughter.

I send peace, healing, love, and light anyway to everyone not because everything’s fine, but because choosing bitterness would be the final indignity.

If this season means anything at all, it’s this: More days turning into more days. Still here. Still asking.

That’ll do.

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

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

⚠️ 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.

Winter in the Waiting Room: Kittens, Cold Snaps, and Full Circles

So, finally, I’m doing the whole hospital and doctor loop thing again. After much faffing about, I’ve managed to change hospitals let’s see if these new faces actually listen, or if it’s just the same NHS pantomime with slightly different costumes. The cold weather’s rolling in and, trust me, my spasticity is giving me absolute hell. Straightening up bits of my body now takes longer than the average GP appointment so, this winter, it’s bed-bound most of the time, because who can afford to run central heating in the new, improved Broken Britain? Makes you wonder if we’re all just meant to relive the “good old days” of struggling with sod all, forty-odd years ago. Funny how life goes more full circles than a washing machine.

And speaking of full circle, it’s 41 years this year since I got down on one knee in Otley by the monument and proposed to Albertine. Loud as a foghorn and just as subtle. Best bloody thing I’ve ever done, hands down. Now, on the anniversary, I’m gearing up for another round of medical circus tricks: off to get a heart monitor fitted for seven days joy of joys. Maybe, just maybe, they’ll actually read my notes this time. God knows, I’ve written enough of them. If the neurology and cardiology departments ever joined forces, maybe they’d even work out what the hell’s actually going on, and I could retire from being on 24-hour “ambulance alert.”

Instead, I’m left dealing with the vagus nerve going full Chernobyl, sending me into another autonomic dysfunction attack. By the time the ambulance turns up, of course, I’m done with the attack and left trying to convince whichever harassed medic is on duty that I’m not, in fact, an attention-seeking hypochondriac. Try explaining the weirdness of your body to doctors and you’ll get the “Google Doctor” eye roll especially if you use the same language they use. Pro tip: NHS staff hate AI, except when they’re using Google to look up what’s wrong with you. Ludicrous.

This morning, it’s a proper arctic frost out there every car iced up, the world glinting like a badly frosted Christmas cake. The kittens are running riot in the lounge, using the sofa as their own private Thunder dome, which is the only thing making me laugh. Meanwhile, I’m keeping my power chair battery topped up because the cold’s killing the range faster than you can say “Mobility Motability means nothing.” Nothing worse than being ready to go out, only for the chair to die and say, “Nice try, mate. Not today.”

So, it’s off to the chemist in the machine of death (Rusty One) for my weekly prescription pilgrimage. Albertine reckons the van will start; I have my doubts. Why I can’t get more than a week’s worth of tablets at once is a question for the ages. Maybe it’s a secret NHS tactic to get me out of the house. Either way, it’s still freezing and my hands are so cold I could play castanets with my own knuckles. Temperature regulation? Gone to pot like everything else.

OT’s been and gone apparently, next year I get a new wheelchair, so there’s a silver lining. Rusty One, meanwhile, needs a trip to the garage, which will no doubt cost me an arm, a leg, and possibly my soul. As I write, the smoke alarm is going off (Albertine’s burned the toast), the kittens are lying on the bed with that “we run this house now” look, and my new bed has bruised my side and pulled muscles I didn’t even know existed. Standard.

And now, in today’s episode of “What Fresh Hell Is This?” the kitten has discovered blueberries. Yes, you read that right. She’s rooting them out of the container and launching them across the room like tiny fruity grenades. You’d think it was catnip. I woke up this morning with one kitten on my head and the other on my shoulder purring away like they’re trying to heal me by vibrational therapy. Honestly, it works better than half the crap the doctors have prescribed. There’s something about the frequency of that purring that really does help.

Right now, as I sit in my power chair, both kittens have gone behind the computers to play with the wires so I’m just waiting for the grand finale: either “dead kitten moment” or “there goes my computer.” Albertine hands me the remote and I grin music, even when it’s Deathly Hallows chart stuff, makes the world a bit less deathly. The beat goes on, the kittens plot my doom, and I’m just trying to stay warm, upright, and very much alive.

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.

Autonomic dysfunction.

Sounds clinical, doesn’t it? Like something you’d hear from a doctor wearing a tie far too cheerful for the situation. In reality, it’s more like your nervous system looks at its job description, shrugs, and says “Nah mate, not today.”

So for those who don’t live in this circus of malfunction, here’s the truth:

The autonomic nervous system is the part of your brain and body that should run quietly in the background. Heart rate. Blood pressure. Body temperature. Digestion. Bladder. Breathing. Sweating. The automatic things the stuff that keeps you alive without you having to think about it.

Except mine and maybe yours doesn’t. Because MS came along like a drunken arsonist with a lighter, and torched the wiring.

Now I get autonomic dysfunction. A fancier way of saying:

✔ My body forgets how to regulate itself ✔ My heart and blood pressure do whatever the hell they like ✔ I can faint, shake, freeze or burn up for no bloody reason ✔ Digestion? Chaos. ✔ Temperature control? Ha. Good joke. ✔ Fight or Flight? Always stuck halfway like a buffering YouTube video

And the kicker? I’m pretty sure I had this before MS even moved in and pissed on the carpet. MS just amped it up, added fireworks, and turned life into a physiological hostage situation.

Some days my body works. Some days I stand up, and the universe tilts sideways like I’m in a Salvador Dalí painting. Some days breathing feels manual. Sometimes my heart behaves like it’s remixing a drum solo.

And yes — it’s exhausting. Yes — it’s humiliating. And yes — it pisses me off because there’s no switch to turn it off, no fuse to replace, no user manual. Just me. Living in a house where the wiring is frayed and the electrics flicker whenever they feel like it.

But here’s the truth I sit with:

I’m still here. Still writing. Still swearing. Still breathing — even when my nervous system forgets how to.

That, my friend, is survival. Not pretty. Not poetic. Just real.

Welcome to my living hell. Make yourself uncomfortable.

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