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. some AI written content

Living with MS Through Inner Strength, Cannabis & Dark Humor

Good afternoon fellow humanoids and N H I , Well, what can I say? Let’s get one thing out of the way early, before anyone suggests resistance bands or tells me to “just keep moving” like I’ve secretly been hoarding the ability to stand up for dramatic effect.

I can’t.

I’m in a power chair. That’s not a metaphor, not a bad day, not a phase I’ll stretch my way out of. That’s the situation. Full stop. So when people ask what physical therapy I do, there’s always this awkward pause where I decide how polite I feel like being. Sometimes I smile and deflect. Sometimes I think, ah yes, I’ll just hop out and jog it off, shall I?

So no, my life isn’t built around physio routines or carefully curated gym sessions. My therapy looks nothing like the glossy leaflets. And yet, strangely enough, it works.

Not in the “miracle cure” sense. Let’s not get ridiculous. MS doesn’t pack up and leave because you’ve found inner peace and a decent strain of cannabis. But surviving it? Living with it without losing your sense of self? That’s a different game entirely.

And that’s where my version of therapy lives.

The Myth of the “Right Way” to Cope

There’s this unspoken expectation that chronic illness should come with a kind of noble discipline. You’re meant to fight it in acceptable ways. Structured ways. Ways that look good from the outside.

You should be:

• Doing your exercises
• Tracking your progress
• Staying relentlessly positive
• Inspiring others, preferably while smiling through obvious pain

And if you’re not doing those things, there’s a subtle implication that you’re… what, exactly? Not trying hard enough? Not coping correctly?

Here’s the truth: there is no correct way to cope with something that rewrites your body without your permission.

Some people find their footing in physical therapy. Good for them. Genuinely. If that works, hold onto it.

But for those of us whose bodies have other ideas, the battlefield shifts. It becomes less about movement and more about endurance of a different kind. Mental. Emotional. Existential, if we’re being dramatic about it. Which I often am.

My Therapy Isn’t Instagram-Friendly

My therapy looks like this:

Reading. Talking. Cannabis. Silence. Thought. A kind of quiet, stubborn refusal to disappear.

Not exactly the stuff of fitness influencers.

But let’s break it down, because each piece matters more than it probably sounds on the surface.

Reading: Escaping Without Leaving

When your physical world shrinks, your internal one either expands or collapses. There’s not much middle ground.

Reading, for me, is a way of refusing to let the walls close in.

It’s not just entertainment. It’s survival. It’s stepping into other lives, other minds, other possibilities when your own body has decided to limit the map. Books don’t care if you can walk. They don’t care if your hands shake or your energy’s shot. They just open the door and let you in.

There’s also something quietly defiant about it. While MS chips away at certain abilities, reading sharpens others. It keeps the mind active, engaged, slightly dangerous.

And if I’m being honest, it’s also a good distraction from the absurdity of it all. Because sometimes the reality of living with MS is so ridiculous that if you stare at it too long without a buffer, you’ll either laugh or lose your mind. Preferably both, in moderation.

Talking: Not Just Noise

Conversation is another lifeline, though not always in the way people expect.

It’s not about constant chatter or forced socialising. It’s about connection that feels real. Honest conversations where you don’t have to pretend everything’s fine or package your experience into something digestible.

There’s a particular kind of exhaustion that comes from being misunderstood repeatedly. Talking to people who actually get it, or at least try to, cuts through that.

And sometimes, yes, it’s just about having a laugh. Dark humour, especially. If you can’t laugh at the situation, it starts laughing at you, and it’s got a much worse sense of humour.

There’s something grounding about saying the blunt, uncomfortable truth out loud. It takes the edge off. Makes it manageable. Turns it from something looming and abstract into something you can at least look in the eye and say, “Right, you again.”

Cannabis: Let’s Not Dance Around It

I use cannabis. THC, CBD, the lot.

There, said plainly, without dressing it up in euphemisms.

For some people, that’s controversial. For me, it’s practical.

It helps with pain. It helps with spasticity. It helps with the kind of background discomfort that never quite goes away but can be turned down from “constant screaming” to “annoying hum.”

It also helps with something less tangible but just as important: perspective.

There’s a softening that happens. Not a loss of clarity, despite what people assume, but a shift. The edges of everything become less sharp. The frustration, the anger, the sheer unfairness of it all doesn’t vanish, but it stops dominating the room.

It creates space. And when you live with something like MS, space is valuable.

No, it’s not a cure. It’s not magic. But it’s a tool. And I’ll take every useful tool I can get.

Natural Rhythms and a Bit of Witchcraft

I describe myself, half-jokingly but also not, as a natural Wiccan.

Not in a performative sense. I’m not out in the woods casting elaborate spells under a full moon, though that would at least make for a better story.

It’s more about a mindset. A way of relating to the world that isn’t purely clinical or mechanical.

Living with MS can make your body feel like a broken machine. Something that’s malfunctioning, unreliable, frustrating. The medical model reinforces that. Everything becomes symptoms, treatments, management strategies.

Necessary, yes. But incomplete.

What I lean into is something more intuitive. Energy. Calm. Intention. The idea that even if my body isn’t cooperating, I can still shape my internal environment.

Call it mindfulness if you want to sanitise it. I prefer something with a bit more character.

It’s about creating moments of stillness that aren’t empty but full. Where you’re not fighting your body or resenting it, just existing alongside it.

Some days that looks like quiet reflection. Other days it’s just sitting there, breathing, thinking, “Well, this is what we’ve got. Let’s work with it.”

There’s a strange kind of strength in that. Not loud or visible, but steady.

Stillness Isn’t Weakness

This is probably the biggest misconception.

If you’re not moving, not actively doing, not visibly pushing forward, people assume you’ve stopped. Given up. Settled.

But stillness can be an act of defiance.

When your body limits your movement, choosing not to let that define your entire existence is a form of resistance. You’re still here. Still thinking, feeling, observing, adapting.

Strength doesn’t always look like action. Sometimes it looks like endurance. Sometimes it looks like sitting in a chair and refusing to disappear, even when everything’s telling you it would be easier to fade into the background.

There’s nothing passive about that.

Dark Humour: The Unsung Therapy

Let’s talk about humour, specifically the darker variety.

Because if you’re dealing with something like MS and you don’t develop a slightly warped sense of humour, I don’t know how you cope.

There’s an absurdity to the whole situation that practically demands it.

Your body does something ridiculous. You respond with, “Brilliant, love that for me.” Not because it’s actually brilliant, but because the alternative is constant outrage, and that’s exhausting.

Dark humour creates distance. It lets you acknowledge how bad something is without being completely consumed by it.

It also tends to weed out people who can’t handle reality. If someone’s uncomfortable with you joking about your own condition, that’s usually a sign they’re more invested in their idea of your experience than the actual thing.

And frankly, life’s too short, even when it feels very long, to cater to that.

Blunt Truth: This Isn’t Inspirational

I’m not here to be inspiring.

That’s another expectation that gets quietly placed on people with chronic illness. That we should somehow turn our experience into something uplifting for others.

Sometimes it is. Sometimes there are moments of clarity, resilience, even a kind of rough beauty in how you adapt.

Other times, it’s just difficult. Frustrating. Boring, even. A long stretch of managing, adjusting, getting through the day.

And that’s fine.

You don’t need to turn your life into a lesson for anyone else. You just need to live it in a way that makes it bearable, maybe even meaningful on your own terms.

What Actually Keeps Me Going

At the center of all of this isn’t any one practice or habit.

It’s something harder to define. Inner strength, if you want a simple label, though that doesn’t quite capture it.

It’s more like a refusal.

A refusal to let MS strip away everything that makes me me. A refusal to be reduced to a diagnosis, a chair, a list of limitations.

The beliefs I hold, the way I see the world, the quiet rituals of thought and presence and, yes, the occasional chemically-assisted perspective shift, all feed into that.

It’s not neat. It’s not structured. It wouldn’t fit into a treatment plan.

But it works.

Final Thought, No Sugarcoating

If you’re looking for a tidy conclusion, something uplifting and neatly packaged, this isn’t that.

Living with MS isn’t tidy.

But it is livable.

Not by following someone else’s blueprint, but by building your own, piece by piece, out of whatever works. Even if it looks unconventional. Especially if it does.

So no, I don’t do physical therapy.

I do something else entirely.

And it keeps me here.

Which, all things considered, is a solid result.

so I'm sending you all out there peace-healing love and light, no matter whom or whatever you are, or wherever you are in this world.

⚠️ 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

I used a power chair and a chainsaw to take down a tree. I did NOT consult my body first.

Good afternoon fellow humanoids and N H I , Well, what can I say? This weekend I've completely overdone it. I've used every last spoon up. I've completely exhausted myself in the garden, trying to do some work. Now, you may laugh, but a tree surgeon costs quite a lot of money. And I got it in my head that in my power chair, I can sit in it with a chainsaw and chop down the offending tree thing. Well, the power saw, chainsaw arrived yesterday, and of course, I'm sat in the garden. And guess what? Even in my power chair, and also chair that I used to sit in the shower in I used, I managed to chop down half a tree. And loads of other things with a bloody great big chainsaw. Oh my God, I must say, I was as nervous as hell. And my God, I'm surprised, Albertine, let me loose with a 12-inch plus inches of chainsaw. Oh my God, I know a lot of people would say, "What the fucking hell are you doing?"

Some would say not in my right mind

Well, I think it comes as no surprise really that I do some very strange things. And this is probably a sign of stranger things to come, I would have thought. But yes, you can have a power chair and you can have progressive multiple sclerosis. No feeling in your arms and legs and completely tatered and operate a quite lethal power saw, chainsaw, it's unbelievable. And I did it what I perceived to be quite safely with my very focal glasses and my, well, trusty leather motorcycle gloves. So, yes, if you'd have asked me 20 or 30 years ago to use a chainsaw, I would have given you a categorical, no bloody way. But as they say, needs must when the devil drives. Unfortunately, I'm not a rich man. I'm only on a state pension, unfortunately. I can't afford a tree surgeon and I don't know anybody who will chop it down for free. So there we go. So the cost of a hundred quid for a cheap electric chain saw from Amazon. Hey presto, job done. I'm feeling really good about myself at this moment in time because I've achieved a milestone and something I never thought I would do.

At the expense of my health.

Well, as the adrenaline wears off, yes, you've guessed it, I'm coming crashing down. Yes, yes, yes, I have completely overdone it. Tinnitus is getting louder, the brain fog is, well, starting to cloud in and I can't feel my arms and legs anymore, and I can feel my throat and it feels like I'm being strangled. So the old auto-immune is giving me some crap as well now. So pins and needles in my hands ferociously now and of course all offs as well in the neck. And I've also got the belt as well, which is really tight and is always making me feel sick for some unknown reason. But still, there we go, fellow humanoids. Let's just say it's a win for me today.

Thought for the day.

"Remember, goblin." "Don't overdo it." "It doesn't end well, but you cannot be told, can you?" "No, you can't, and you won't even listen to yourself."

so I'm sending you all out there peace-healing love and light, no matter whom or whatever you are, or wherever you are in this world.

⚠️ 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

Remember waking up to crackling radios and rock ‘n’ roll drifting through the air… before life became complicated?

Well, good morning, good afternoon, good evening, wherever you are, fellow humanoids and NHIs. Yes, it's the weekend and my weekend starts here. Do you remember those words back on the radio back in the 60s and 70s if you're that old? I do. I used to remember the weekends when I used to wake up and you used to hear the rock and roll music blaring out of the old transistor radio. Yes, listening to Tony Blackburn and radio one back in the 60s and 70s. What a lovely sunny, sunny morning you used to wake up, listening to Ed Stu-pot and his weird weird stuff. What absolute memories of a blast from the past. I know it may sound very cheesy now, but the music back then was essentially amazing. Some of the bands they had then still stand the test of time, even on these times that we live in now. And more so, I often think.

fun and motorcycles seem to go together

So when I was really, really young, I used to have a dirt bike and I used to take it up to the old railway track. And I suppose I would only have been 9, 11. When we used to do this myself and a group of friends and we used to spend the weekend just having fun. Without any care in the world whatsoever. It was an old gellira 80 and wow we used to do insane things riding up steep banks making jumps jumping over people doing all the sorts of things these days that would oh my god yes you'd need a safety man there and all sorts of safety equipment because it definitely wasn't health and safety time then my word no somebody could have really got hurt But it's only when you look back that you sadly realize these things, because when you're young you think you're completely indestructible. So most weekends we would take our old bikes, wheel them up to the old railway or the farmers field and we would spend the morning or an afternoon scrambling and riding around. Nobody really bothered us, nobody really cared. And we just had loads and loads of fun. On a Saturday and a Sunday afternoon, bothering no one. But that was the late 60s, early 1970s. Boy, how things have now changed.

Chemist's machine from hell.

Well amazing news on the chemist's machine from hell dispensing automation units. It's not going to have a problem with any of my prescriptions anymore. Isn't that fantastic? I went into the chemists and I've now managed to get it all sorted out. Oh wow. Yeah, that saves me many frustrating visits to the chemist. Trying to put a code into a machine that did not like me, that hated me, that I am sure when it saw me coming thought ah, we will get him, he will not get his medication. So I'm looking forward to my next prescription. Oh yes indeed. When I get my medication I will be hoping that it will go as smooth as smooth can be. But we will see. The thing is I don't like pressing buttons unless I've got gloves on because you never know what you can catch from buttons that you press. Oh indeed always remember take a pair of rubber or plastic gloves with you when you have to open doors and use petrol pumps etc because it's amazing where bugs and lurgies lay waiting to pounce Giving you a severe diarrhea dilemma or even a vomit virus. and a lot of people don't wash their hands and when they go to use a petrol pump or a door handle well there we go. So there we go take care when you're out there and remember wash your hands thoroughly wherever you go. I know I do.

Things I take with me on a trip.

I suppose the most important thing for me is to make sure I have everything on a trip. So even if it's to the local doctors or the local shop or even far away, I always make sure I have a bag packed in case of emergency because you never know when you're going to need things.

I always make sure that on my phone I have my ice numbers, that's in case of emergency numbers that people can phone. Well, in case of an emergency. And of course there's various articles of spare clothing and various medications. Always remembering to keep hydrated and to take a bottle of water with you as well. Yes. I can carry medical cannabis with me, funnily enough. So I have to keep my prescription with me when I carry it. So that's very weird. It's a very strange feeling when you're going in your power chair around a shopping center. And you've got a pot of cannabis on you and you're going past a policeman for instance. You sort of stop and you're sort of there thinking, "My God!" You know, that really does give me a head trip. But me personally, I have found that police very helpful when I have had dealings with them. In fact, they've always been very helpful. But that's on the occasions I've needed them. But I find them quite cheerful overall. And I suppose if you treat them with respect, they'll treat you with respect. And that's the way I think we should always pay respect to doctors, nurses, firemen, ambulancemen, and all the people out there who put their lives at risk for us.

Yes, we really should say a big thank you to all of them, no matter who they are. Even if it's down to the loneliest cleaner, we should say a massive big thank you. And I suppose that goes for most people in the community in the society we live in. You know, if we're all to be more polite and happier and smile towards each other, things might slowly change. But that's just me thinking a little bit outside of the box, remembering how things used to be in the 1960s and 1970s, and seeing things change so drastically. It's heartbreaking seeing some of those changes that have indirectly incurred on people's lives. It is truly, truly sad.

The weekend and AI

I was hoping to actually go somewhere this weekend, but there is nothing going on, nothing happening around here. So I guess I'm stuck inside again this weekend. I am still working on the AI project and I'm running an AI from my own computer now and not using the main server. I'm using my PC instead. I must say the answers that I am getting is a lot better than we would have got from the filtered AI on the usual AI platforms. Still, looking out the window it is very hot this morning, and my word, I think we're in for a scorching weekend. Saturday morning, looking out the window, oh my god, the weather is blowing me away. I think I'm going to have to get my power chair out and go for a ride this afternoon. Yes, indeed, it will be fun. But then again I might not. Just depends on how things go. My autonomic dysfunction is giving me a bad underlying feeling today and yeah that's not very pleasant. Tinnitus has calmed down quite considerably today which is itself a miracle. So I suggest if you're in a sunny place and get lots of sunshine and vitamin D, hydrate and go out and get warm and feel the warm sunshine rays of healing on your skin.

Still sending everyone who reads this blog, peace, healing, love and light, to whomever and whatever you are and wherever you are from.

⚠️ 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