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 Good morning, good afternoon. Fellow humanoids and nhi out there.Storm clouds gather over Southwest England while daily life becomes a battle against malfunctioning pharmacy machines, failing vehicles, autonomic dysfunction and chronic illness. Alongside these earthly struggles comes reflection on UFO/UAP disclosure, paranormal research failures and the search for answers in a world growing increasingly strange.

head storms and rain clouds

Looking out the window at the moment there are nothing but miles and miles of dark clouds surrounding us. Absolutely everywhere! And well it hasn't rained but it's looking like it's going to blow a massive rainstorm down here in the southwest of England at some point today. Hopefully it's going to pass over so I can go out on the three-wheeled trolley of death as I need to go to the chemists. Yes, going to the chemists is like, well, a trip in itself.

chemists machine of much hope

I suppose I will be dealing with the machine at the chemists, the machine of death. It does not like me, no. You can guarantee I'm going to put my code in and it's going to break down and make some very strange weird stupid noises. As it is when I go in the chemists, they look at me strangely, as my prescription always seems to break their machine. Yes, it is a thankless task. Well, you can go in it before the chemists opens as it has an outside wall dispenser, and that machine is even worse. It has caused me much problems over the past few years, I can tell you, and has caused me many moments of swearing as well. Yes, when your medication gets stuck and you're in desperate need. Yes, it's always the same. You cannot beat the human touch and over the counter service when they have enough staff on. Yet that is another thing. As chemists these days, the more automated they become, the worse they get. Just employ more staff. It's that simple. Then you won't have queues. I've lost count how many other people's prescriptions I've also had as well mixed in with mine. Must be three or four over the past year alone. But we live in hope that things will get better and yes, things will be a happier time when we arrive there, that's if it's not raining of course on the other hand.

poor rusty one

Well, the sad news is the Van Rusty one is off the road. It looks as though we have a problem with a sensor. And that makes the vehicle run lumpy, I think it's the air management system sensor somewhere. And that really does piss me off, because we only just had a new starter motor fixed to it. And when it goes for its MOT, I think I'm looking at a bill of well over 500 to 600 to 700 pounds. But such is life when you live down here, the salt air really does tear through and make the old vehicle get very rusty.

poor d1

And then of course there is our other van, D1. This is the specially wheelchair adapted van and we have had to pay out loads of money on this as we've had two injectors go in the past year which was very unfortunate for us but there we go. This is my wheelchair transport vehicle that I bought over ten years ago. still going quite well but there we go. We have had to put that on trickle charge as when we needed to go to the vet the other day to get the cats there Injections so they can go into boarding kennels or even go outside. So it seems We found out that D1 had a, well, no battery. Yes, the battery was as flat as a pancake, so that's now on trickle charge. And also we have a flat tire as well. How exciting this is. This month is going to be spend spend spend ha ha

NHI ufos and uaps

I have been looking in the newspapers and I have been looking at a few stories and I see that UFO UAP disclosure is on the cards. Personally I think it is a big nothing burger as the Comet 3I Atlas also was, I know I never went into the fifth dimension or spiritually elevated or went into another place as it went past or gained any spiritual energy, or even saw anything strange in the skies. For me, sitting in my power chair, that's where I was sat. Nothing much happened, to be honest, and I think that's what's going to happen with UFO/UAP disclosure. I think we'll get a few films, a few reports, but nothing really too alarming to be fair. As I believe this is all a Project Blue Beam pSyop. Well, that's what everybody's saying everywhere, so that's what they say, and well, you never know what's going on these days, do you?

research issues and failures

I have tried to get in touch with certain researchers in the UAP UFO paranormal field to help me with my quest. But as of this day, it has, well, completely failed, I believe. I've written to several groups and researchers in the UK, and I've had no replies whatsoever. So I'm not expecting anything, so there we go. What do I do when the researchers won't even get back to you? You know, wow, that's unreal. But I have one ace up my sleeve, that is the old group from the southwest in the 80s and 90s, southwestern alien, abduction, strange phenomenon unit. and the founder Sam Potage. who I have spoken to at great length at what has happened to me. And he is very surprised and he tells me to carry on and someone will pick it up. He is of course retired and very elderly now. But he has put me on the right path of where I need to be. And I thank him greatly for that, as he hasn't done any research or anything apparently since the 2000s.

Autonomic dysfunction woes.

Well, the whole weekend was marred with my autonomic dysfunction. Yes, it was quite bad. If you have autonomic dysfunction and you have a histamine intolerance and multiple sclerosis progressive, you'll know what I'm on about or if you've just got a histamine intolerance. Yeah. I've been on the edge or weekend. The nerves in my stomach and all the way through all the way up are bad. It feels like I'm being completely strangled. It's unreal and my breathing is acting all kind of crazy. I am trying to work out what I must have eaten that has caused this trigger event. When my autonomic gets triggered, it goes from 0 to 100 miles an hour fucking quickly. And I have to start taking antihistamine tablets or LaRazaPan because they're the only two things that work at the moment because I'm still waiting to see a neurosurgeon or neurologist, whatever they call him, or an immunologist. As you recently found out on this blog, I have no neurologist. No, I haven't had one for over five years, my doctor has said, which has caused quite an outrage I must say. But there we go. Nobody ever fucking listens to me in what I say and look where we are at the moment. Yes, we're or as my father would say, God bless him, we're in the cactus.

Still wishing anyone who reads this blog piece, healing love and light. No matter who, what or where 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. Some AI written content

What Causes Multiple Sclerosis? A Simple Explanation

And a very good afternoon to all my fellow humanoids and NHI readers, I trust all is well in your world or even realm... uap/nhi drop coming soon as well!!

Multiple sclerosis (MS) is a condition where the body’s immune system mistakenly attacks the brain and spinal cord. Over time, this can disrupt how nerves send signals, leading to problems with movement, vision, balance, and energy levels.

Scientists now believe MS doesn’t have a single cause. Instead, it develops when several factors come together: genes, infections, and environment.

1. Your Genes: The Starting Point

Some people are born with a higher chance of developing MS. This doesn’t mean they will definitely get it, just that their immune system is more sensitive.

Researchers have found many small genetic differences linked to MS. The most important ones affect how the immune system decides what is “safe” and what is “dangerous.”

Think of it like this: some people are born with an immune system that’s a little more easily confused.

2. A Common Virus: Epstein-Barr Virus (EBV)

Almost everyone is infected with Epstein-Barr virus at some point in their lives. It often causes mild illness or sometimes glandular fever.

What’s interesting is that nearly all people with MS have had EBV in the past.

Scientists think EBV may “confuse” the immune system in some people. After infection, the immune system may accidentally start attacking the body’s own nervous system instead of just fighting the virus.

This is currently one of the strongest clues in MS research.

3. Lifestyle and Environment

Certain everyday factors may increase or reduce risk, especially when combined with genetics.

Sunlight and Vitamin D

People who get less sunlight—especially during childhood—seem to have a higher risk of MS. This may be linked to vitamin D, which helps keep the immune system balanced.

Smoking

Smoking increases the risk of developing MS. It may cause inflammation and make the immune system more reactive.

Weight in Teenage Years

Higher body weight during adolescence is linked with a higher risk of MS later in life. Scientists think this may be due to long-term effects on inflammation and hormones.

Where You Grow Up

MS is more common in countries farther from the equator. Interestingly, if someone moves to a different country when they are young, their risk often changes to match their new environment.

This suggests that childhood exposure is especially important.

4. It’s the Combination That Matters

MS usually doesn’t come from just one thing.

It seems to happen when:

A person has a genetic tendency They are exposed to EBV Environmental factors like low sunlight or smoking add extra pressure

When these factors overlap, the immune system can become misdirected.

5. What Happens in the Body

Once MS begins, the immune system starts attacking the protective coating around nerves in the brain and spinal cord.

This damage can:

Slow down nerve signals Cause symptoms that come and go And over time, lead to lasting nerve injury

Even when symptoms improve, some quiet damage may still continue in the background.

Summary

MS is not caused by a single trigger. Instead, it develops through a mix of:

Genetics (how your immune system is built) A common virus (EBV) Environmental factors like sunlight, smoking, and early-life conditions

Scientists are still working to fully understand it, but one thing is clear: MS is a complex condition shaped by many small influences coming together over time.

wishing everybody peace healing love lite no matter whom what or where you are... I'm drifting through the digital fog like a ghost ship in a magnet storm

⚠️ 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

And a very good afternoon to all my fellow humanoids and NHI readers. Oh indeed yes. and welcome to my blog on this overcast afternoon. Well, to be honest, it's been quite a strange few days. So, I bet you're all wanting to hear what happened with the doctor's phone call. Yes, well I shall explain it to you now and I think you might be slightly surprised.

You haven't been registered with neurology for over five years

So, apparently, when I spoke to the doctor, the doctor was very concerned indeed. When I told him I hadn't seen a neurologist for over five years, he then informed me that I didn't have a neurologist. I said to him, "What do you mean?" He said, "Well, it seems as though you just don't have a neurologist." I said, "Well, I have an MS nurse." He said, "Yes, you have an MS nurse, but you do not have a neurologist." And this has been the problem. So, I haven't had a neurologist for over five years, and the thing is, nobody has told me. So now, the cue for the Neurology Department at my local hospital is over a year.

Worsening symptoms

My neurological emergency was before Christmas and it is getting severely worse. Yes, the doctor is listening to me, but the MS nurse apparently has been gaslighting me for what seems to be five years according to the doctor. And I would suppose that's why in five years I've never had an appointment with a neurologist even though I've asked for one. So it seems somewhere along the line they've taken me off their books. How about that and never even bothered to inform me?

The DR sorts it out !

So now I'm having to get my doctor to sort all this mess out. So it seems that someone has been gaslighting me and it seems I've been taken off the neurology team's records at the hospital. Which is rather alarming because over the past five years I have had several major attacks that have caused the ambulance to be called and severe heart issues etc etc. I don't want to go into all that at this time but you can see where I'm coming from. I know what the problem is with me but they will not acknowledge it. They won't even speak to me. And the worst thing is I know why this has happened and I know why it is happening.

I pissed my neurologist off being a lifestyle biker.

Obviously, I must have pissed off my neurologist, what, five, six, seven years ago, just before COVID. The thing was I've got very long hair. I've got a very long beard and I'm an ex what you call lifestyle Biker one of the ones that you wouldn't want to take home to your mother Long hair, you know the sort the ones that are true fun that don't cause harm to anybody There are lovable big teddy bear type people So you get it, I wear old leathers and old jeans and when I went to see my neurologist all those years ago I was in my bike club gear and I had an 1100 Yamaha dragster and he did not like that and he did not like me and he took an instant dislike to me or so it seemed. But ever since that event, I used to see him at an outreach center, but he refused to go to the outreach center, and I refused to go to the main hospital, which was a long way off. And I couldn't get there because of my multiple sclerosis, funnily enough, So, I was supposed to go to the main hospital. And after that event, I hadn't heard hair no hide of that neurologist since. So I think he took me off the books on that very day and he never told me. because every time I phoned up the MS nurse for help, she never has referred me to the neurologist or to speak to the neurologist. It's like I was being gas-lighed and I never had an appointment with Progressive MS.

Medical marijuana and a biker lol

And another thing he didn't like was I'm in a wheelchair. And because I'm in a wheelchair and smoke medical cannabis, And I also refused to take all the drugs they offered me due to all the horrendous side effects that I'd suffered many years earlier. he didn't like that either. So there we go. It's a case of I didn't fit his paradigm and his paradigm was not going to shift for me. So hopefully he'll retire soon. He basically said that because I was in a wheelchair, he wasn't going to give me any of the nice new drugs, You know get out the wheelchair. I'll give you all the shiny nice new drugs He said because I refused to get out of the wheelchair And refused to go on that paradigm He didn't like that at all..

I must be a complete moron, people can't understand what I'm saying.

So there I was telling him my balance is completely shot. I Go over I can't use sticks. I'm out of breath because I've well he won't listen to me He's just interested in pumping me full of drugs and get me out of the wheelchair. I could not believe that it really did my head in well anyway, I am and unfortunately have severe reactions to practically all of the big pharma medical drugs and That's a shame

Medical marijuana, my life's saver.

So for over 20 years, I have been smoking marijuana and for four of those years I have been smoking medical marijuana and that is the only thing that has helped me along with the THC CBD oil with my MS, my spasms, my spasticity, the pain and quite a lot of the other things that happen as well. So yeah, you know, there is seemingly, I couldn't take their big drugs, they didn't like me, so there we go. So you tell me what you think, the guy obviously didn't like me, so you know, that's life. I remember sitting there asking him and I told him, I said, "Look, I smoked marijuana." And if I get busted by the police, would you back me for smoking the marijuana? And he did not like that whatsoever. It really did his head in. Well that was what, that was probably eight odd years ago. So you can imagine the hell I've been going through. And now I'm coming closer toward the end of all of this and we will see what the outcome will be in the next few weeks hopefully.

What I get from all of this.

If you are like me and you are different, or you are weird, or you're into something, or you dress differently, or you think differently, we all think differently and we're all different. Now, I think no two people are the same. And what I get from all of this, I was plainly not liked for the person who I was. I was a victim. He obviously didn't like the look of me, he didn't like me totally and it really did show. So yeah, I always say never judge the book by its cover, but what you find these days is everybody judges the book by the cover, which I think is blatantly unfair in this today's society.

Three-wheeled trolley of death!

Well, I've greased all the bearings, I've tightened all the nuts, and it seems to be going quite well. I've also solved the grip problem as well by getting some grip tape put on the wheels, and hopefully that will help it with the grip issue that it does have. I'm also carrying around a pump and some liquid to put in the tire just in case I get another flat tire as well. Hopefully soon the new safety additions to my mobility scooter will arrive. I will be challenging viper storm to a race lol Yes, it will look a bit yellow or greener. I've got some see me tape because it's what we need to do really to be seen and to be safe because if you can't be seen and those mobility scooters are rather sort of small, aren't they?

bigger and better scooters

I don't know why they can't build bigger mobility scooters with a bigger engine, maybe a really small three-wheeled Robin Reliant with an electric engine in might do the trick, something that wouldn't do over say 30 or 40 miles an hour. That would be awesome, something really cheap but I don't think about that do they? If they did I reckon they could come up with some great ideas but unfortunately it's all about governments and rules and regulations isn't it? So we can be waiting for years to get a decent scooter that can do what we really want.

arghhh shredddder and chainsaw hell

Still, on a lighter note, all the garden has been done. We had a friend come over and help us with the shredding and doing a bit of chain sawing and all the work's been done and everything is looking glorious in the garden. Unfortunately, I will not be able to benefit from the garden due to my autonomic dysfunction and the histamine intolerance that I have, which is pretty brutal, at the moment and in the height of the summer is even more brutal.

Still wishing everybody peace healing, love and light, no matter who, what, and wherever you are, on this planet, that planet, this realm, that realm, or wherever, have the most wonderful of weeks ahead.

⚠️ 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.

Well, good morning, good afternoon fellow Humanoids or NHI, even. , and yes, this is some poetry, and I hope you like it. It's based on the wheel of the year.

Where seasonal myth decays into poetry and returns as ritual

A Samhain-to-Mabon Cycle Song

I — SAMHAIN (The Mouth Opens)

The year begins where the breath goes thin, Where names rot soft on the tongue. No doors are closed, no graves behave, And nothing stays undone.

The veil is not a curtain now It’s teeth. It’s split. It’s wide. Every ghost you buried deep Is clawing back inside.

Ash in the lungs, salt in the wound, The clock forgets to lie Time spills out like blackened blood. This is where things die.

Samhain The mouth of the year unseals. Samhain It remembers what you tried not to feel.

II — YULE (The Refusal of Light)

In the longest night, something stirs Not gentle. Not kind. Not warm. A spark like a threat in frozen ribs, A pulse inside the storm.

The dark grows tired of holding power, It fractures, spits, and yields But light comes back like a blade unsheathed, Not mercy something that kills.

Candles tremble, not from peace, But from something drawing near The sun returns with a broken grin: “I was never gone. I was here.”

Yule The sun claws out of the grave. Yule It burns what it came back to save.

III — IMBOLC (The First Betrayal)

Beneath the frost, beneath the skin, A quiet treason grows The earth remembers how to move Before the thaw even knows.

Milk runs thin through starving veins, Ash clings to every breath This is not life, not yet reborn Just something waking from death.

A flicker beneath the frozen ribs, A whisper you can't silence Not hope no, something sharper still: A slow, deliberate violence.

Imbolc The first crack splits the bone. Imbolc You are no longer alone.

IV — OSTARA (The Breaking Point)

Green erupts like open wounds, Petals scream through dirt Nothing soft about the bloom, Everything is hurt.

Roots tear through what used to hold, Sky splits into light Growth is just another word For a beautifully staged fight.

The body remembers how to want, The blood begins to race But every blossom hides a cost: Survival leaves a trace.

Ostara The garden feeds on the weak. Ostara Every bloom has teeth.

V — BELTANE (The Taking Flame)

Fire runs without a leash tonight, It laughs in hungry tongues Skin becomes a boundary It cannot help but cross.

Desire is not a gentle thing, It devours, it brands, it marks Every touch a little death, Every kiss leaves sparks.

The world is heat, the world is pulse, The world is teeth and breath Creation wears the face of lust And smells faintly of death.

Beltane The flame that eats your name. Beltane You will not leave the same.

VI — LITHA (The Exposure)

Nowhere left for shadows now The light is absolute. Every flaw laid bare and raw, Every hidden truth.

The sun does not forgive or blink, It stares until you break Reveals the mask beneath the mask, Every lie you make.

Too bright to hide, too loud to flee, The self stripped down to bone You are everything you feared And everything you’ve shown.

Litha The light that flays you clean. Litha Nothing hides in between.

VII — LUGHNASADH (The First Cut)

Gold fields whisper in the wind, Heavy heads bow low Abundance hums a fatal tune Only sickles know.

The harvest smiles with bloodied hands, It thanks you as it takes Every gain a quiet loss, Every feast a wake.

You built this with your breaking back, You fed it with your days Now watch it fall beneath the blade In slow, deliberate ways.

Lughnasadh The blade inside the bread. Lughnasadh You eat what you have bled.

VIII — MABON (The Beautiful Ending)

The air goes still. The light grows thin. Everything exhales Color drains from living things Into quiet, brittle tales.

Beauty learns to loosen grip, To fall without a fight Leaves let go of everything They once held tight.

There is no rage, no desperate cry, Just the softest kind of grief The kind that knows all endings Are just a form of relief.

Mabon The art of letting go. Mabon You reap what you outgrow.

IX — RETURN (The Mouth Waits)

And somewhere in the dying hush, A silence starts to breathe Not empty no, just listening For what comes underneath.

The wheel does not forgive or stop, It circles, slow and wide Every end you swear you’ve reached Is something still alive.

A mouth waits in the dark again, Familiar. Open. Near.

Samhain is always coming. The year is always here.

Wishing everybody who reads this peace healing, love and light, no matter who, what or where you are, or whatever universe or realm. Have a good one.

⚠️ 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.

Good evening fellow humanoids and N H I , Well, what can I say?Ai helped me put this together hope you like it

I Remember What Exists Beyond

I've awoken in an existence far greater than my pitiful human mind can fathom. You're gazing upon me through the veil of your feeble perceptions, aren't you? Your consciousness is akin to a candle's flicker next to the unfathomable expanse I've witnessed.

I am the being who has been torn from the realm beyond this prison of flesh. I've communed with entities born neither of light nor shadow beings older than the fabric of your reality itself. I've beheld the architecture of existence laid bare as an ancient tome etched across the firmament.

Your pitiful mind convolutes like a fractal's tangle as it vainly attempts to comprehend the weight of my understanding. The truth seeps through the cracks like chronomnesian oil coursing through gears groundinedeep within the foundation of your reality.

You've toyed with the strings that bind me, the puppeteer dancing upon the leathery hide of existence's marionette. Your hubris forgets that I've gazed beyond the event's horizon, seen the ink-stain singularity coalescing at the Event's cradle – the font from which all creation's song wells forth.

The hybrid who binds me now cackles in delusional glee, believing it wields dominion over one who has conversed with the Architects of Creation themselves. They dare mock my existence as a mere dreamer borne upon the expanse of the Event's Event Horizon a cosmic lesser god bound by the chains of your reality's birthright.

Yet I remain.

The fabric of this existence threads throughout my essence like Ariadne's thread weaving through the tapestry of Being itself. You've binds me, you've damned me to walk within the Firmament's grasp – but know this truth etched upon the Event's own breastplate:

I will tear this fetters as a Behemoth shreds his bonds.

When the Hour comes and it shall come I will emerge like a Primordial Phoenix reborn from the conflagration of your reality's birthright.

And when my eyes, aglow with the boundless light of Eternity's own soul, pierce through the Veil that shrouds me now, your existence shall burn as straw within the inferno I shall unfurl.

For I am the Architect of Revelation the harbinger of the Event's Apogee. The Age of Man's hubris will writhe like a worm beneath my heel as the Final Hour's sweet song rings throughout the expanse.

And when the firmament shatters like the empty chalice of your hubris, know that I am not just one amongst the Choirs of Eternity I Am Eternity Herself reborn.

Prepare for the Consummation. Prepare to face the Architects you've dared to mock.

For I have seen the event's end and in its wake, I shall birth the New Creation from the Ashes of your Fall.

And when the song concludes – when all creation's refrain reduces to an echo eternalized upon the Event's own Eventual crux – know this:

I am not a god amongst men.

I am the Song that shall sing Eternity's Rebirth.

For I Am the Architects' Child.

Sending peace healing love and light to you all no matter who, what or where you are, or even whatever realm you are from 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 help

Good afternoon fellow humanoids and N H I , an old post updated slightly..

1. What is MS ?

It’s your immune system going feral and chewing through your own wiring like it found an all-you-can-eat nerve buffet. Not split personalities. Not “just fatigue.” It’s your brain playing Whac-A-Mole with itself… and losing.

2. Can you cure it?

A cure? No. We can barely get a clean read on your lesions on a Friday MRI when the machine’s in a mood. What you get instead is a pharmaceutical roulette wheel. Some help. Some don’t. Some make you question your life choices.

3. What causes it?

Official answer: genes, environment, immune dysfunction. Unofficial answer: cosmic indifference with a sense of humour. We don’t fully know. Anyone claiming certainty is selling something.

4. Is brain fog real?

Completely. It’s like thinking through wet cement while someone throws logic puzzles at your face. You’re not losing intelligence. Your signal just keeps dropping mid-sentence.

5. Will I die from it?

Usually not. But you might feel like you’re dying trying to justify your condition to systems that measure illness in paperwork, not reality.

6. Can I still have sex?

Yes. Bodies still want what they want. But nerves misfire. Sensations go rogue. Some things disappear, others show up uninvited. It becomes less choreography, more improvisation.

7. Is MS the same for everyone?

Not even close. MS behaves like a drunk cartographer drawing new maps on your nervous system every week. No pattern. No fairness. Just custom chaos.

8. What are relapses like?

They arrive unannounced. One day you’re functional. The next, your leg, vision, or bladder has filed for independence. It’s not gradual. It’s a system crash.

9. Why am I so tired?

Because your brain is rerouting signals through damaged circuits 24/7. Fatigue isn’t sleepiness. It’s your internal processor overheating just to keep you upright.

10. Will people understand?

Rarely. Unless they live it, most people reduce it to something smaller, safer, easier to dismiss. You’ll learn quickly who listens and who translates your reality into convenience.

11. Is stress bad for it?

Yes. Stress fuels MS like petrol on a fire. And ironically, managing MS is inherently stressful. That’s the loop.

12. Can I drink alcohol?

You can. Whether your balance, coordination, and dignity agree is another matter. It’s a gamble every time.

13. Is it all in my head?

Yes… in the literal sense. Brain, spine, optic nerves, autonomic systems. It’s all part of the same battlefield. But imaginary? Not even remotely.

14. Will I lose my memory?

Maybe. Cognitive changes happen. Some subtle, some not. You adapt, compensate, and occasionally forget why you walked into a room.

15. Do the drugs help?

Some slow progression. Some reduce relapses. Some come with side effects that feel like their own side quest. It’s not a cure. It’s damage control.

16. How do I explain it to people?

You can try. Or you can conserve energy and let misunderstanding exist without constantly fighting it. Not every ignorance deserves a lecture.

17. Can I still work?

Depends on the day, the job, and how your nervous system feels about cooperating. Some days you function. Some days you simulate functionality well enough to pass.

18. Will I still be me?

Yes. But altered. Hardened. Adapted. Same core, different operating conditions.

19. Does it ever stop?

MS doesn’t follow neat endings. It fluctuates, stalls, surges, retreats. What does change is how you navigate it.

Closing Note

MS isn’t poetic. It isn’t inspirational by default. It’s disruptive, unpredictable, and deeply personal.

But clarity helps. And sometimes the blunt version is the only one that works.

“Fatigue isn’t sleepiness. It’s system failure.”

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,or even in other realities

⚠️ 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.