The weird eccentric ramblings of a multiple sclerosis sufferer

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

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

This is my reality.

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

Gaslighting

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

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

When the Body Shuts Down

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

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

Autonomic dysfunction, flare up

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

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

Ignored by the System

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

Life changes

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

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

mental health issues

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

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

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

Sending everyone who reads this blog, peace, healing, love and light no matter whom, what or whoever you are.

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

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

A deeply personal story about life with multiple sclerosis, resilience, and why awareness must go beyond a single week.

Good afternoon fellow humanoids and nhi. It appears I have been living under a stone. It is MS Awareness Week. Indeed, yes it is. There is a problem though. It should be awareness all year round and not for one week of a year. Yeah? I think many of you would agree that there should be awareness about MS and all illnesses and all chronic illnesses. Not just for one week or just one day of a year. People should care all year. Why just for one week? It doesn't make any sense whatsoever does it really?

It's all very well. Some people who have MS, like myself, find it difficult to go on all these activities that everybody else seems to be able to go and do. I for one just don't have the energy anymore and I'm in a power chair and why would I want to go and do archery of all things. Now I couldn't even pull the string bow back. That's how bad things are with me and hell I'm retired now as well. My body is completely fucked. Why would I want to go doing things to make myself feel worse? No I don't.

So yes, I can appreciate some people with MS can do these activities, but there are a lot who can't. And I think probably we feel maybe a little bit left out somehow, because there's no MS groups anymore anywhere. People with MS don't go to meet anywhere. And does the MS nurse say, "Oh, I know, let's start an MS group up for people to go and meet once a month." You know, that would be a nice thing, but those sorts of things don't happen, do they? I think people would like to meet up and have a bit of fun, have a chat and just generally have a couple of hours of unabashed fun. Why not? You know, not just being stuck at home 24/7 doing nothing and being left to rot. But that's only my personal opinion.

There are many things I have had to give up because of multiple sclerosis, some of the things I dearly loved doing So yes, I tried to live on the edge up until I retired. I suppose I was a bit of a rebel. I was a bit of an outlaw. I did things my way. I always have. I'm not one of the sheep. I'm not one of the crowd. I'm an individual. I have a voice. Yes, and I'm different and I'm eccentric and I am very proud of that fact. I ripped my blinkers off many years ago.

I am still learning many many things. Yes, I am and I'm having a great deal of fun learning. I'm using my mind. Yes, I have severe brain fogs and yes, I have severe tinnitus and it is very challenging indeed for me, but I'm never going to give up, even if I can only do ten minutes in a day or even an hour in a day. That is an achievement. Doing a blog post is also an achievement for me as well. Going out, just the local shop, is an achievement for me as well. So yeah, things for me are pretty bad having progressive MS and also this autoimmune dysfunction, which means I can't go out in the summer now because of the histamine from the flowers etc... Well, the hay fever stuff. So there we go. I can't win.

But what I am doing, I am constantly evolving and changing my life around, so as my multiple sclerosis progresses, I progress in ways of trying to make my life better. So it may take away my motorcycle riding at the age of 65. Yeah, now that was a complete blast, I can tell you. Yeah, ha ha. But it was an 1100 trike I had specially built. and I managed to stay on the road with that for about 20 years. So that was a way of staying on a motorcycle. And yes, I even joined a few motorcycle trike clubs as well and got involved in clubs and all sorts of different weird things. But there we go. I did not let my illness stop me. In fact, my illness spurred me on further and further to be more than I was even.

So now, it's the computer and doing all the other things that I like doing as well. And I'm still learning and that makes me happy. So yeah, as long as I take it steady and don't overdo it, I think things might be okay. But I don't know the meaning of take it easy, so I always end up overdoing it or hurting myself. You know, that's just one of the things when you have in bought up like me, when you see something that might need doing, you do it. And well, when you're say 20, 25, 30, easy job, but when you're 66, Yeah, it's easier said than done.

So my words to everybody is, having a chronic illness, for me, has changed my life, perversely, for the better in some ways, but I will say, I'm never giving up, I'm gonna carry on fighting 'til the bitter end. And yeah, I'm not gonna let it beat me.

Still wishing everybody that reads this blog, peace, healing, love and light, no matter whomever or whatever you are, in the world or universe or multiverses even.

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

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

Between Source and Mirror A Personal Model of Reality

Good morning fellow Humanoids and NHI, There are moments in life when the world stops feeling like a simple, solid thing. Not in a dramatic way. More like a subtle shift in texture. As if reality, usually taken for granted as fixed and external, briefly reveals itself as something assembled. Not necessarily artificial in a crude sense, but structured. Layered. Responsive in ways that feel just slightly too intentional to be random.

This is not a conclusion I arrived at through argument. It is something that formed slowly through experience, reflection, and a persistent sense that consciousness is not fully explained by the material surface of things.

What follows is not a claim of certainty. It is a model. A way of interpreting what I have felt and observed in my own inner and outer life.

The feeling that something underlies the surface

There is a recurring impression I have had over time: that life is not simply happening in front of me, but is also happening through a structure I cannot directly see.

At times, events feel less like isolated accidents and more like meaningful placements within a larger pattern. Not in a simplistic “everything happens for a reason” sense, but in a more architectural sense. As though experience is arranged to produce perception, learning, and response.

There are also moments where consciousness itself feels oddly detached from the framework it moves through, as if awareness is not native to the environment it inhabits.

These impressions do not arrive as arguments. They arrive as sensations of recognition that are difficult to translate into conventional language.

Over time, they begin to accumulate into a question:

What if reality is not simply physical, but structured for experience?

The Gnostic mirror

At a certain point, I encountered Gnostic cosmology, and it echoed something I had already been circling intuitively.

In the traditions preserved within the Nag Hammadi Library, there is a recurring distinction between a transcendent source of reality and a secondary creative force associated with the formation of the material world.

This secondary figure is often referred to as the Demiurge, a builder or organiser of the physical realm who is not identical with the ultimate source of existence.

What struck me was not the mythology itself, but the structure of the idea. A layered reality. A separation between origin and construction. Between source and system.

I do not treat this as literal cosmological engineering. I treat it as a symbolic map that mirrors an internal sense I already carried: that what we perceive may not be the highest level of what is real, but a mediated expression of something deeper.

In that sense, the Gnostic framework does not answer the question for me. It gives language to the question itself.

Reality as a learning environment

From here, my interpretation begins to take a more personal shape.

I experience life less as a single linear event and more as a cycle of engagement. A kind of recursive return to existence, where consciousness enters form, interacts with limitation, and emerges changed.

In this model, what we call “life” functions like a structured field of learning. Not in a moralistic sense of reward and punishment, but in a developmental sense. Experience refines perception. Constraint generates depth. Interaction produces awareness.

This leads naturally to a view of existence that resembles a loop:

A return to a larger source of awareness. A re-entry into embodied experience. A continuation of refinement through repetition.

I do not present this as something I can prove. I present it as the most coherent way I can currently hold the patterns I feel in both thought and experience.

The simulation analogy

The language of “simulation” often appears in modern discussions of reality, but I use it cautiously. Not as a statement that reality is artificial in a technological sense, but as a metaphor for structured experience.

A simulation, in its most abstract meaning, is not about computers. It is about an environment designed to produce experience under conditions that are not fully visible from within it.

In that sense, the word becomes a pointer rather than a conclusion.

It suggests that what we perceive as solid may be the interface layer of something deeper. Not necessarily false, but partial. Not necessarily illusory, but incomplete.

From within that frame, existence becomes less like a static object and more like a responsive field in which consciousness is placed for development, observation, or transformation.

Consciousness in form

One image that stays with me is the idea of consciousness as something temporarily contained within structure.

Not imprisoned. Not reduced. But focused.

Like a vast awareness compressed into a finite lens of perception, able to experience limitation as a way of generating contrast, meaning, and motion.

In this sense, embodiment is not the definition of what we are. It is the condition through which experience becomes specific.

This is where the metaphor I sometimes use comes from. The sense that we are something like souls held within “containers” of form. Not as a literal claim about anatomy or metaphysics, but as a way of expressing the tension between inner vastness and outer limitation.

A necessary boundary

It is important to state clearly that none of this is offered as objective fact.

It is a personal interpretive model shaped by reflection, symbolic frameworks, and lived experience. It does not compete with scientific descriptions of physical reality. It exists alongside them as a different mode of meaning-making.

Different people will naturally hold different frameworks for interpreting existence. Some will find this perspective resonant. Others will not. Both responses are valid.

What matters to me is not persuasion, but clarity of articulation.

THis model persists for me The reason this way of seeing continues to return is not because it resolves everything, but because it organizes experience in a way that feels internally consistent. It provides a way of holding questions that otherwise remain fragmented: * Why consciousness feels distinct from matter * Why experience often feels structured rather than random * Why life sometimes appears cyclical in its lessons and patterns * Why certain inner intuitions resist purely material explanation It does not eliminate mystery. It re frames it.

Closing reflection

If there is anything I would want someone to take from this, it is not agreement. It is curiosity.

Not about believing the same structure, but about noticing the ways in which reality feels to them personally. The subtle impressions that arise before interpretation. The quiet sense of pattern that does not always fit neatly into explanation.

Whether one calls it simulation, illusion, symbolism, or something else entirely, the deeper question remains open:

What kind of place is experience actually happening in, and what kind of awareness is having it?

I do not claim to know the answer.

I only know that the question keeps unfolding.

wishing everybody peace healing love and lite to whom ever and whatever and wherever you are...

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

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

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

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

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

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

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

Neurology says “not us.” MS team shrugs a bit and passes it along. Then I get told “you need immunology.” Immunology? Good luck getting anywhere near them unless you can bend time and bureaucracy itself.

I’ve had enough.

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

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

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

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

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

So good afternoon fellow humanoids, wherever or whomever you may be. Yes, it's one of those very frustrating afternoons. When you think I wish I could be doing something totally different than being stuck in this chair, looking out the window, watching all going on around me. I thought this afternoon I would try and do something different but now I am regretting it. I have a very large bruise on my leg and I am not feeling the best that's for sure. I overdid it. I thought that I would help. Albertine in the garden. Big mistake indeed.

I just wish I'd waited for the demon weed wacker to come over and do everything. And then I wouldn't have hurt myself, but there we go. You think you can do anything until you can't, but there we go. I won't tell you what I tried to lift or pull. I shouldn't have done it, but there we go. You still think you're superhuman. Your mind is acting like a 20 year old and your body is acting like a 120 year old person. I woke up feeling very strange and weird this morning for usual pain in the abdomen and all the nerves singing their morning musical as they do before my painful morning ablutions. And I felt rather good about myself as well. And I thought I would try and be helpful today. I think I've been helpful, but I have been lecturing Albertine about not, overdoing it, and I don't think that went down rather well.

Wow, and I've just seen the price of fuel unbelievable. Well, I'm glad I've got my three-wheel trolley of death. At least it takes a small charge, and it's cheaper to run, but I can only carry a few things, and it takes me hours to get anywhere on it. But there we go. I suppose there will be a lot fewer cars on the road. And then that will mean the roads will be a lot clearer for me to ride the roads of the southwest of England at a speed of 8 miles an hour for the death-defying three-wheel trolley of death. As Viper Storm said, "It should have go fast as stripes, but my friend Viper, who has also a three-wheeled sex trolley of death." Yes, indeed, that's what he has, and rides around north of the county. Oh indeed, what a marvelous sight to see indeed. He makes the fair maidens these buckle. Oh yes indeed. The man who invented the word plumstick.

As I sit here and fire up the volcano for my medical marijuana, I smile because I think to myself, well, at least I'm nearly human. as I have this goblin brain, ah ha. The goblin sometimes takes over and it can cause mayhem in my life. The goblin is that person that causes me more trouble than anything else in my life. The goblin is my multiple sclerosis. If you haven't guessed already, yes. Ah, the blog goblin, the goblin, is what I call my MS to be, fair. It seems the goblin is a bit of an alter ego. Just like my main persona, Mr. Warlock Dark, has been my persona now for so many years. I've forgotten 30 years, maybe 40 odd years. And he's been around the warlock. Yes, he's my alter ego, he's the real me. He's that person who is completely raw. Balls to the wall, says it like it is, doesn't like being censored or sanitized. Yes, but unfortunately, it seems that everything in my world has changed 360 degrees. And my God, I am so glad for those changes.

So yes, I have had my mind taken elsewhere by other things over the past few weeks when I discovered AI music generating programs. So that has taken up some of my time, but unfortunately I've been getting the severe brain fogs and been unable to do much as of late and it's really, really annoying. I just kind of sit there looking at that blank page wondering about what lyrics I'm going to use. But I must say I've even surprised myself with what I've done. I've even turned a lot of stories into lyrics as well for songs and turned them into songs. In fact, I've been doing all sorts of weird different things. But unfortunately only when my mind and head allows because it's just completely screwed up. I have the pain in my head. I just feel so tired all the time. I just feel so tired and the pain is just unbelievable. And this bloody tinnitus is just up force ten at the moment.

This autonomic dysfunction is also playing hell with my breathing as well and causing me severe problems. I have this problem with autonomic dysfunction, it's with me all the time and I can feel it all the time and I can feel the different levels that it goes up on. It's very strange and I'm waiting to see a neurologist still and I'm also waiting to see a Immunologist. But again, it's going to be long-winded and they're going to take their time. I've been told to see a neurologist, well, I haven't seen one in five or six years, to actually see when I've got to wait another five or six months, and to see a new immunologist, well, I've got to wait a month to see my doctor, so I can ask him to see a new immunologist as well. And it was my MS nurse that told me to contact my doctor's surgery, leave a message that I need to see the immunologist about my autonomic dysfunction and the histamine thing. But she said this would make things go quicker, but it hasn't, of course, it seems as though it's made things bloody worse as usual, because what with strikes, bureaucracy and one thing and another, it looks as though I am being left again and forgotten.

Still, I am used to being forgotten and treated weirdly by people, but I really couldn't give a damn. The thing is I'm never going to change and I'm not going to change for anyone. So there we go. I know my limits and I know what I can and cannot do. And I'm not going to let people tell me who or what I am. I am me. The thing is, multiple sclerosis hits people in many, many different ways. No two people are the same with MS. And it's the same with chronic illness in general. People who have chronic illness suffer 24/7. Some illnesses are hidden that we cannot see. And, you know, people have to realize that all chronic illness is something that is the harshest thing that can happen to anybody. It rages through their lives. It causes complete havoc. It causes a living hell for everybody. You lose friends. You have family who won't even speak to you. You have people that cannot even look you in the eye. You're treated differently. Sometimes you're treated like a pariah. All because you have a chronic illness. And in a power chair, people seem to treat you differently. They seem to treat you like you have something that's catching and they can catch it too if they get too near. Well, fuck them. That's what I say. Fuck them. And, yeah, they need to get themselves a life.

Any victory, no matter how small, is a victory. Still, I must finish here, sending everybody peace, healing and love and light. Take care and remember stay strong.

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

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

A chaotic yet victorious weekend of repairing a bizarre three-piece wheel hub, silencing squeaky bearings, and preparing the “Three-Wheeled Trolley of Death” for its triumphant return. Alongside the mechanical madness, a milestone of over 300 self-produced AI-enhanced music tracks marks a creative breakthrough.

The Three-Wheeled Trolley of Death is BACK

Well, good evening, good afternoon, fellow humanoids out there in the land of... Well, wherever we are at this time... And place in space. It has been quite the weekend so far. It took me a week, but between myself and Albertine and one of our neighbors, we managed to fix the puncture on the three-wheeled trolley of death. Yes, three people to change a inner tube , but putting the new tube in was not the easiest. I have never encountered taking the front of the wheel hub off. Yes, it was a really weird wheel. I encountered two putting two halves to make a whole wheel with the tube and the tire sandwiched in between. So I managed to get both the wheel nuts off both sides and guess what, there was no lubrication or anything on the bearings for the wheels. So a couple of squirts in there and we have got rid of the squeaks. So hopefully the three wheeled Trolley of Death won't squeak like a squeaky chair on cheap cola.

Still, as I look out of the window, I do see the sun but I see the sky and the clouds of doom are heading towards us im afraid, so it looks like I'm not going to be able to test the three-wheeled scooter of death till tomorrow. But the good news is, the Tyre is still up. Yes, so we didn't fail there. And I'm very much looking forward to taking it out tomorrow on its maiden voyage. It's had a lube job as well on all the bearings because it was the squeaky-squaky machine from squeaky land. Indeed, Albertine was embarrassed to be near me. That's how bad the squeak really was. Now the cat has decided to use my leg as a sharpening implement. Well, it's a good job, I can't feel that, isn't it really? And now she's jumped on my lap and yes, I've had to stop doing what I'm doing because she demands that I give her a good belly rub. Ha ha!

Still, the most amazing thing is I've now got over 300 music tracks that I have now produced. And I'm now using my own voice as well, would you believe? I'm using AI synthesis of some description. This is even better, so not only am I using my own lyrics, I'm now using my own voice. This is just like totally bonkers. I never would have thought this possible in all those many years that I've been alive. As basically, wow, it blows my mind the technology that we have these days and the things we're able to do, isn't it just so wonderful? Yet we can't find anybody to fix a pothole. Oh dear me, such is life though eh?

Still, I went out this morning with Albertine and the Tyre has stayed up and I made sure that the nuts were tightened up on the wheels and the bearings were lubed. We have no squeaks and all the Tyre are ready to go, so the three-wheel trolley of death gets its major outing again tomorrow. Oh yes, will it go faster? Well, anything's fast and about two miles an hour with a brake stuck on. Still, sending everybody peace and healing and trusting that you've had a good weekend as it comes to the end. And hopefully next week will be a better week for me and everybody else out there.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Still, anyway, that's enough of my ranting and moaning today. Still, I'd wish you all a very good week ahead and send you peace and healing, and hope that things go well for you all. Whomever or whatever you are, wherever, or whomever you are.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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