Neurology

⚠️ 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 afternoon to all the humanoids and extraterrestrials, non-human intelligence's, or whoever reads this blog a very good afternoon evening to you all. As we all know, chronic illness is not the nicest things. Having progressive multiple sclerosis like I have, and now this autonomic dysfunction is really, really bad. And I'm hoping that they finally... They finally diagnose my autonomic dysfunction. Seriously, after 10 years this has been going on, I'm just so fed up of the whole thing and I want them to sort it out once and for all. So tomorrow is the high noon moment as far as I'm concerned.

Finally, after six years, maybe I will be heard. (a bit Ranty )

Well, tomorrow is the day I get to see a neurologist after 5 to 6 years of waiting. They sort of lost me five or six years ago somewhere on their records. Yes, it was quite the last time I saw them was quite the experience. I must say. Oh, the joys, so I'm wondering what's going to happen. I've been and got all my questions ready by using my medical AI, which I have found invaluable as I have been working my way through multiple sclerosis and this horrible autonomic dysfunction, which has taken the doctors 10 years, 10 years, I must say, of investigation. And they still haven't got it right yet. So tomorrow is a culmination of 10 years of frustration and 10 years of being gaslit and ignored, so it should be quite interesting what happens.

Listen to me for somethings sakes !!!!

So I have my list and I'm going to read it out to him. I'm not going to give it to him to read because he can browse through and nothing will happen. So I'm going to read that list. I'm not going to let him hit me with his little sticks or whatever the fuck he likes doing. I'm going to sit there and I'm going to be apologetically reading out what I've put. And I'll have my carer with me as well. So yes, I'm going to see what he has to say about this. And then I'm going to find out why he touched me to the curb six years ago, took me off his books. I'd love to know about that, why I've been let go for six fucking years out in the wilderness on my own, with no help but so fucking ever. And if I don't understand something, I'll have my medical AI on my phone. So I'm not going to let him get away with using terms and trying to bamboozle me. I'm going to show this person that I am a person. I am not some fucking num-nuts. And I am fed up with being treated like a lump of meat at a meat market !!!!!!!!

White coat syndrome coming in.

So as we know I have really bad white coat syndrome, and already I am stressed out, sweating,feeling sick, SO I am going to have to put on my big boy pants lol... drop a few lorazapam me thinks lol....as the closer I get to having to go the worse I feel... I am trying not to think about it.. and trying to be positive but its getting harder to do as time goes on as you can only take so much of the hassle and BS I just want it all over and done something to calm it all down some, I am used to my daily grind with the ms, but I need help and there is none anyway we will see what tomorrow brings

I am felling really weird and strange and very stressed out at this time... I am finding it hard to find words and my heads hurting, my breathing's going weirder I am going to have to lay down for a while before I post this

The darkness and the abyss

yes I have that feeling its really weird indeed I suppose I'll have my four-wheeled, slow chariot of death. Yes, it won't go more than about three miles an hour. Even a snail can overtake this one. So, yeah, I should be whizzing around the hospital trying to find where I need to be, playing dodge the patience. Yeah, that's always a good one. Yeah, so it's real inconvenient having to go to a hospital. I used to have a visiting neurologist back in the day, but neurologists don't seem to do places that are out in the boonies anymore. You have to travel hours just to go and see one. And then when you go and see one, you end up disappointed and with a dissatisfaction result, but that's life I suppose, I should be grateful that I can get to see someone.

Well, there we go, still, sending anyone and everybody peace-healing love and light, and wishing everybody a fantastic week ahead. Happiness and smiles to everyone everywhere.

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

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

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

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

And a very good afternoon to all my fellow humanoids and NHI readers everywhere and anywhere.

So it's Friday afternoon and it is looking quite okay outside. Very cloudy. Very, very cloudy. It's sort of, It might rain. It might not rain. But then again, it's been quite the week so far. We managed to get the two cats vaccinated today, so they will be allowed to go out into the wilds next week. That was a definite adventure for both of the kittens who are now not so little anymore. And now nine months old, I can't quite believe it. they have grown so large in the size in a short amount of time. They've been with us.

d1 Transport woes, oh indeed not good.

Well, in the week I had the misfortune to do a three-hour return trip into mid Devon and back, and oh boy, I felt really, really bad. My back, my shoulders, in fact, my whole body feels rattled to total death. Unbelievable. My neck, it's just like my whole body has just gone, nah, I shouldn't have done that, mate, and it's decided to give up on me. Luckily I was not driving, I have not driven for many years now, and Albertine was playing spot and missed the pothole. Yes indeed, and when you're carrying a chariot of death in the back of the van with some weight, then half give a clunk. When you hit a bump I must say. And now we find out that the one has a slow puncture. Oh, the joys. So we're going to have to take that to our local tire shop and get that sorted out.

rusty one

But the worst use is Rusty One is going for an early MOT. And this could be the end of Rusty One. This could be the one bill too far unfortunately. But we live and learn and we will soon see in two weeks time what will happen. As I know there's quite a few things that need doing and it's going to cost quite a lot of money. But when you're stuck in the middle of nowhere, you have to have transport. Otherwise, you go absolutely nowhere. We are lucky here, we have a local milkman who delivers eggs and milk and we have a brilliant farm shop as well, just down the road. So I can't complain. Food here is quite good for what I need, that's what counts the most.

good news i hear you say ! Neurology appointments two weeks time.

Well, I had a phone call at 5 to 9 this morning from the neurologist's secretary. And guess what? I've got an appointment for two weeks time. How unbelievable is that? It's not over the phone. It's a personal go to the hospital visit. Ooh! So, I'm going to get my medical AI fired up with every symptom and everything that has happened to me over the past, well, five years since he took me off his books and has ignored me. Yes, my doctor went and kicked some ass and finally people are starting to remember that I fucking well exist about time I say so, but then again, of course this neurologist does not like me. He thinks I'm weird because when I first saw him, of course, I was riding an 1100cc Yamaha drag star, long hair, long beard, biker clothing. I look well, you can imagine what I look like people. And of course, when you're in your sixties and you're dressed like that, it sort of makes them feel a bit strange. And then of course I actually knew what I was on about and he didn't like that because it questions his God complex. And also guess what? Get out of your wheelchair and I will give you loads of drugs and smarties. And I kind of looked at him and said, "Nah, I'm happy where I am, thank you." And then after that, he just sort of let me out to pasture, I think, and I only ever spoke to an MS nurse for five to six years. Never heard or saw hide nor hair of the neurologist until my doctor had told me that I was under no neurology department. And he was shocked and he was very angry. I would say the word "pissed off" would sound more the word I was looking for.

UFO, UAP and much strangeness.

So we are seeing four types of alien or non-human intelligence reported by the government that are the extraterrestrials or NHI that have been visiting our planet since Roswell. And I would hazard a guess thousands of years before that. If this is not Project Blue-beam, then it will be a very interesting thing. As I am looking forward to meeting these inter-dimensional non-human intelligence's, as I would like to have a very deep chat with them about certain things that have happened to me over my 66 years on this planet, with the weirdness of tricksters and other strange things that have been going on in my life that I would like to understand. And they also say that these aliens could be demons or Nephilim, or they could be angels or fallen angels or whatever they are. It's a very interesting thing because everybody's got their own take on this. Personally, I don't know why any extraterrestrial intelligence would want to get in touch with us as we are such a war-like planet. To be honest with you, we seem to find something new and if we want it we just go and take it and that's my take if we went out to space what we'd be like and maybe that's why we are living in a simulation. Yes indeed, simulation theory, it's something maybe you should go up and look at because it does not say "Oh there is no God" in fact it talks about the demi urge , gnosis etc. It is really worth looking up and doing some research.

Still, I wish everybody who reads this blog no matter who, where or what, where you're from, a fantastic, happy weekend, and if you're in the UK, have a happy bank holiday weekend. And don't do anything I would do.

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

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

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

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

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

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

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

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

So yet again, fellow humanoids, I am still researching the phenomena in multiple sclerosis that may cause a person to see liminal shapes and many other forms of weirdness. Yes, liminal shapes. I have asked many people, but I have been getting very different answers to what these could be, and I'm still actively trying to find out if there is anybody out there who is also suffering with seeing these things, these spheres and these weird geometrical shapes, large cubes with like loads of little, well, thousands of little black square cubes in the massive big cube. It's really weird. Then there is the big orb. It must be about two feet high. And sometimes it is completely translucent with black bands going through it from the top to the bottom. And I've also seen it with complete white with black bands going through. And this is, I would say, maybe two feet in size in height.

So i would really appreciate anyone else who has any other chronic illness or doesn't. Who sees the sort of things to get in touch with me so you know we can try and see what is actually going on because i've asked many researchers and people. I get many varying different answers. I actually asked the ai and it was not worth asking to be honest with you as all the answers it gave. Well the standard ones it would not have its guardrails so that was a great pity. I find that when I use AI, I tend to run into a lot of guardrails. And personally speaking, the AI sanitizes things so much. It just really isn't worth reading. It's quite crazy. The AI treating you like a child and a naughty child at. THAT!

I have had so many weird experiences over the years that I believe researchers of the paranormal phenomena have issue crossing subjects and subject matters as where I think most of everything is actually linked. I believe the UFO/UAP phenomena and alien extraterrestrial phenomena, and spiritual phenomena, ultra terestrial phenomena etc. all are connected in some way. I suppose it's just a question of joining all the dots and trying to make sense of it, but sometimes you need people as sounding boards who also have had similar or the same experiences. Here we can correlate and come up with some sort of hypothesis on what has been happening.

Yes, and this is where this blog goes into extreme weirdness, because along with my progressive multiple sclerosis, I seem to have other issues as well. I seem to be able to hear dead people. I seem to have precognition and suffer with premonitions. Same thing, really. Yes, I wonder what is really going on, and I've had many liminal experiences as well as ghostly experiences over my years. I have experienced astral projection. I have done automatic viewing. I have done many of those things. Yes, I've even delved deep into witchcraft and black magic and many of the dark arts.

But I have come up with the same conclusion every time. And it appears that I am very Gnostic in my views. This, I did not know until it was pointed out to me many, many months ago. So we learn something new every day. So, I am rapidly reaching this conclusion that I should research people's cases myself to see what people have in common. So, if you've experienced anything on the weird or the strange, get in contact with me in complete confidence. And we will try and discover what is really going on out there in the weird, wide world.

As I think it's a great thing for people to start talking about these things, and then we can rule out that we're not going round the bend or going mad. As me, I really want to find out what is going on with me, whether it is my chronic illness, multiple sclerosis, or I'm having other worldly things happening. I would like to know. Is that really too much to ask, I wonder? But there we go. Everybody'll put it down to me being strange or weird. Oh, he's got some sort of weirdness because he's got progressive MS, he's in a wheelchair. Well, I wasn't always in a wheelchair, I didn't always have progressive MS. And well, there we go, and I've pretty much had these views most of my life. So, weird and eccentric, I'm proud of being. So if there's anyone out there who wants to be weird and eccentric with me, then that's all good.

So whether you're in a wheelchair got a progressive illness or not, or there's nothing wrong with you whatsoever, and you've just happened on this blog just by accident, and you just happen to read this. Well, if you're going through any weirdness, please tell us, because I'm sure we'd really, really like to know, because the more people that speak about these weird extreme things that we go through, the better. Still that's it from me.

Sending everybody peace, healing, love, and light, no matter whom or whatever you may be.

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

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

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

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

well fellow humanoids So, as ever, the nhs have screwed up yet again. I asked months ago to be transferred from one hospital to another because the neurology department where I'm at at the moment is not the best and I wanted to go to the better neurology department. Well, I've been waiting for months for an appointment. I received two letters today and apparently they've never even heard of me at that neurology department and they said even if they had it was so long ago we've destroyed all his records.

So you can guess that I'm a bit pissed off with everything. With everything I've been going through over the past load of months. And I thought I was actually going to get somewhere. But again, I have been proven wrong. I have to suffer just because somebody can't do their job properly.

They must think that I love having autonomic dysfunction and progressive multiple sclerosis, and have a B bundle block heart issue and a weakened heart wall and everything else that's going on with me. Because as far as I'm concerned, I can't see anybody who really gives a fuck about me, apart from my own family.

They must think that I like being in pain 24/7, they must think that I like not being able to eat anything due to my condition. And then if I eat the wrong food, I end up critically ill sometimes. Really, they don't give a damn. And nobody even listens. You're patted on the head and placated.

So now I'm completely stressed out due to somebody who cannot do their job properly. I feel absolutely sick to the stomach of all the gaslighting and BS that I have had to put up over these past 40 odd 50 odd years. It's been un bloody, believable what I've had to go through and how badly I've been treated. It seems the louder you shout, the further back in the queue you go. It just seems like nobody gives a damn anymore.

So, it's Tuesday and I am completely stressed out. My neck is no better. It is absolutely unbelievable. I had no sleep at all last night and my autoionic dysfunction has been on the edge as well. So yeah, I could have done with some better news but there we go.

Sending peace, healing, love and light to whomever or whatever you are. Sentience is a thing of wonder.

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

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

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

Most people especially the ones who don’t have MS and cheerfully explain MS to you like they’ve swallowed a medical encyclopaedia still cling to this ridiculous nursery-school belief: “MS is one disease.”

It isn’t. It never has been. It’s a label slapped over a whole family of neurological disasters that behave nothing alike. And if you live with it long enough, you realise you’re not dealing with a condition you’re living with a cast of unpredictable lodgers who take turns smashing up the inside of your skull and spinal cord.

This is the part doctors rarely say out loud. This is the part patients live every day.

The textbook MS and the real MS are barely on speaking terms

The Central Nervous System is basically a giant electrical wiring system. MS is what happens when your immune system has a tantrum and strips the insulation off random bits of that wiring. Exactly which wires get stripped determines which part of your life goes to hell this week.

Lesions in the optic nerve? Congratulations, you’re going blind today. Lesions in the cerebellum? Hope you didn’t want balance or coordination. Lesions in the cord? Enjoy the spasms, numbness, bladder mutiny and “legs made of microwaved custard.”

And here’s the kicker: the pattern is different for every single one of us.

That’s not spiritual nonsense. That’s not me being poetic. That’s straight from neurology research. MS is wildly heterogeneous meaning two people with the same type of MS can have completely different lives, symptoms, triggers, progressions, side-effects, and outcomes.

This is why the neat categories — RRMS, SPMS, PPMS — feel more like filing instructions than actual representations of lived reality.

My lived experience is mine — not a universal template

Everything I say here is my MS, not yours, not your neighbour’s, not your cousin’s. We share a diagnosis but we’re not living the same disease.

Some of the strategies I’ve used over the years have helped me survive and even claw back some functionality. That doesn’t mean they’ll help everyone. Nothing in MS is universal — except unpredictability.

Personalised approaches help some. Pharma helps some. A mix helps many. And sometimes nothing bloody works and you just white-knuckle your way through the day.

That’s the truth no one puts in the brochures.

The tyranny of the “average patient”

Modern medicine loves averages. Clinical trials, treatment guidelines, risk profiles — all built around mythical median humans who don’t actually exist. Meanwhile, real people have real bodies with real quirks, comorbidities, sensitivities, traumas, histories, genetics, environments, and chemical tolerances.

I’m one of the ones who doesn’t fit the mould. You probably are too. That’s why you’re reading this.

Over the decades, some meds have helped me. Others have flattened me. Some were supposed to “improve my quality of life” and instead set me on fire from the inside out. This isn’t anti-science. It’s anti-stupidity. It’s refusing to pretend that one-size-fits-all treatment works when the disease doesn’t behave in one size or one shape.

The invisible illness problem

Half of MS happens in places other people can’t see.

Fatigue that feels like you’ve been drop-kicked by gravity. Brain fog thick enough to lose your own name in. Nerve pain that lights you up like a faulty Christmas tree. Autonomic dysfunction that flips you from stable to collapsing in seconds. And everyone else sees… nothing.

Invisible suffering becomes unbelievable suffering in the eyes of people who only trust what they can see.

This is why the world claps your good days and interrogates your bad ones: “You were doing so well!” Yes, Susan, because I had 48 hours of functioning nerve conduction. Don’t get excited.

Living data vs. clinical data

Research tells us MS is unpredictable and variable. Patients tell us exactly how unpredictable and how variable — in ways doctors don’t always clock because they don’t live inside the burning building.

Lived experience is data. Messy, subjective, inconvenient, but absolutely real.

And we need more of it.

Not to replace medicine, but to expand it. Not to reject pharma, but to refine it. Not to preach cures, but to share reality.

Why personal regimes become survival, not rebellion

Call it alternative, natural, holistic, personalised — whatever label makes you least likely to be shouted at online. For many of us, building our own systems is not ideology, it’s necessity.

When conventional medicine hits its limits, you start tweaking your own dials:

Food. Stress. Triggers. Supplements. Sleep. Movement. Emotional processing. Gut health. Breathing. Calming the nervous system so it doesn’t leap off a cliff.

This isn’t magic. This isn’t woo. This is survival engineering.

Personal experimentation is how many MS patients find the thing that makes the next day slightly less catastrophic.

It’s not a cure. It’s not universal. It’s survival. And survival, in a disease like MS, is an art.

The honest bottom line MS is not one disease. It never was.

It’s a messy spectrum of neurological chaos wearing a single label because scientists haven’t yet built a microscope fine enough for the truth.

Until then, we keep talking. We keep writing. We keep comparing notes. And we keep dragging the reality of MS out of the shadows where the polite medical pamphlets prefer to hide it.

If this helps someone feel a bit less alone in their personal version of hell, then the writing was worth it.

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

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

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

A love-letter to MS self-advocacy, wrapped in barbed wire

There’s a point in this MS journey where the penny drops — not the diagnosis, but the darker penny:

No one is coming to save you.

Not the neurologist with the framed qualifications. Not the nurse who thinks fatigue means “sleepy”. Not the turmeric-worshipping cousin who thinks they’ve cracked your nervous system with a spice rack.

They can stand beside us. Support us. But they do not live in this body.

They don’t feel lightning legs at midnight. They don’t taste steroid-metal at 3am. They don’t forget how spoons work mid-breakfast.

We do.

So when a treatment doesn’t fit, when the side effects steamroll you, when the plan feels wrong — that’s when the real fight starts.

Because if you don’t speak, you vanish.

THE DISAGREEMENT MOMENT

You sit in a room lit like an interrogation chamber. White coat opposite. Clipboard poised. Confidence radiating like WiFi.

You say:

“This treatment is making me worse.”

And you watch that look happen — the blink, the polite file-away, the mental note:

“non-compliant patient.”

Medical disagreement is treated like disrespect. Not curiosity. Not collaboration. Disobedience.

And you think:

“Why are you holding the map when I’m the battlefield?”

THE TRUTH THEY RARELY ADMIT

MS is chaos wearing a nervous system like a borrowed coat. It mutates. It hides. It laughs at predictability. And sometimes — yes, brace for impact — the patient knows more. Because we're the ones living the symptoms, not studying them. Because we feel every electric misfire, every bladder rebellion, every cognitive fade. Because we are the data in motion. If we don’t advocate for ourselves, we become spectators in our own disease. Not happening.

WHEN YOU SAY NO, YOU’RE NOT REBELLIOUS — YOU’RE ALIVE

We’re trained to nod. To thank. To comply.

But disagreement is not disrespect it’s self-defence.

You’re not awkward. You’re not dramatic. You’re not “difficult.”

You’re protecting the only nervous system you’ve got.

And sometimes survival is two syllables long:

“I disagree.”

WORDS YOU CAN USE NEXT TIME YOU’RE IN THAT ROOM

Steal these. Tattoo them mentally. Use without apology:

🞂 “This isn’t working what else is available?” 🞂 “Slow down, brain fog is real.” 🞂 “Show me evidence, not reassurance.” 🞂 “I don’t feel heard right now.” 🞂 “I want options list them.” 🞂 “No.”

That last one is a grenade. Pull pin when needed.

FINAL TRUTH

Some doctors will respect your voice. Some will hate it. Some appointments will feel like war. But silence is a slow suffocation. Speaking up is oxygen. Say the hard words. Own your body. Be heard even if your voice shakes through every syllable. MS can take many things but not your agency unless you surrender it. And you’re not surrendering anything.

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

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

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

By Warlock Dark — The Kittens-of-Doom-Tolerated Version

Let me tell you something most doctors won’t say out loud because it ruins the tidy little world they live in: there is no such thing as “multiple sclerosis”. Not as one thing. Not as one condition. Not as one neat textbook chapter.

What exists out here, in the trenches where the real people live, is millions of different versions of MS one for every poor sod whose nervous system it chose to torment.

My MS isn’t your friend’s MS. Your friend’s MS isn’t your neighbour’s MS. And your neighbour’s MS isn’t the version your doctor read about at medical school 30 years ago before caffeine, stress and pharmaceuticals turned their brain into soup.

That’s the real problem. And that’s what nobody talks about.

So today I’m talking about it.

Because this isn’t theory this is my lived experience, and the lived experience of every chronic illness warrior out there who’s been patronised, misdiagnosed, over-prescribed, under-listened to and told to “trust the science” while their body is doing a completely different opera in a completely different key.

Your MS Is Not My MS And That’s the Heart of the Issue

I’ve been dealing with this beast for years. And it didn’t take long to realise the obvious truth: MS behaves differently in every single person.

Not a little bit differently but massively, dramatically differently. To the point where two MS patients in the same postcode can look like they’ve got completely unrelated illnesses.

One gets fatigue. One gets spasms. One gets cognitive collapse. One gets mood surges. One gets vision problems. One gets pain. One gets none of the above. One gets all the above. One wakes up feeling normal and collapses by afternoon. One collapses in the morning and rallies at night like a nocturnal raccoon.

And somehow… the medical system insists it’s all the same condition.

It’s not.

It never has been.

It never will be.

MS is not a single disease it is a collection of personalised neurological catastrophes wearing the same name tag.

Every nervous system reacts differently. Every immune profile is different. Every flare is different. Every trauma history matters. Every hormonal cycle matters. Every bit of diet tolerance matters. Every gut problem matters. Every tiny bit of stress matters. MS is a fingerprint, not a formula.

This is why the “one size fits all” approach to treatment falls apart before it even starts.

Doctors Don’t Live in Our Bodies That’s the Core Failure

Let’s be blunt. Doctors don’t have MS. They don’t wake up with burning nerves, spasming muscles, brain fog thick enough to butter bread with, or the charming experience of waking up in a body that refuses to obey basic commands.

They don’t know the sudden dread of a flare. They don’t know the nights where the pain turns you into a sleepless, twitching banshee. They don’t know the fear that comes from a throat that stops working, or a leg that decides it’s clocking off for the day.

And because they don’t live it, they can only treat it academically. Which works about as well as giving someone directions to a town you’ve never visited.

Medicine needs to stop pretending everything is predictable. It’s not. The only predictable thing about MS is its unpredictability.

Why Natural Medicine Often Works Better Than Pharma The Truth Nobody Likes to Hear

Let me be clear: this isn’t anti-science. This is anti-stupidity. There’s a difference.

I’ve done the pharma route. I’ve swallowed the pills. I’ve taken the injections. I’ve sat in the chair for the infusions. And I’ve been in the hell where you take one drug, and then three more drugs to counteract the first drug, and then another drug to deal with the side effects of the side effects.

It’s not a treatment plan. It’s a chemical hostage situation.

Polypharmacy wrecks people. Not sometimes often.

It makes fatigue worse. It makes cognition worse. It messes with the gut. It interacts with itself. And before you know it, you’re a walking medicine cabinet with a pulse.

Natural medicine? It does something the pharmaceutical world still struggles with:

It treats the person, not the “average patient”.

That’s why medical cannabis changed my life. THC has been more stabilising for me than a decade of prescription chaos.

Lion’s Mane helped my cognition when nothing else did. Vitamin D and magnesium did more for my mood and nerves than SSRIs ever could. Some things worked. Some things didn’t. But the point is: they worked according to my biology, not a clinical trial with 500 strangers.

That’s the golden rule chronic illness patients learn the hard way:

There is no universal cure because there is no universal body.

Everyone’s Illness Is a Different Monster — Even with the Same Name

Here’s the part doctors don’t like:

Two people can have “the same illness” and need completely different treatments, foods, drugs, supplements, or habits.

Your body might be able to tolerate one thing that destroys someone else’s stomach. Your nervous system might benefit from THC while someone else gets overwhelmed by it. You might thrive on Lion’s Mane while someone else feels nothing.

That’s not placebo. That’s biology. Neurology is personal. Immunity is personal. Trauma is personal. Symptoms are personal. So treatment has to be personal too.

No neurologist’s office in the world is set up for this kind of nuance. But it’s the only approach that works.

What the System Doesn’t Understand But Patients Do

The real experts are the ones living with the condition.

Not the clinicians. Not the researchers. Not the textbooks.

The people who wake up inside these bodies every day.

We understand patterns doctors miss. We recognise triggers before blood tests do. We notice neurological shifts before MRI scans catch up.

We know when food wrecks us. We know when weather hits us. We know when stress snaps something inside us. We know when the meds help — and when they poison.

And the reason we know is simple:

We don’t have the luxury of being wrong.

Doctors can be wrong and move on. Patients pay the price.

Your MS, My MS, and the Future of Chronic Illness

Here’s the truth I wish the world would catch up to:

MS should be treated as dozens of sub-types, not one umbrella diagnosis.

If medicine ever wants to improve MS outcomes, it needs to:

personalise treatment

map symptom patterns

respect lived experience

stop treating outliers as “exceptions”

integrate natural therapies

merge medical science with actual patient data

stop pretending everyone’s body reacts the same

People aren’t machines. Bodies aren’t standardised. And chronic illness doesn’t follow rules.

You want real progress? Start listening to the people living the reality — not just the ones writing the guidelines.

My Conclusion? Simple. Brutal. True.

Your MS is yours. Mine is mine. Nobody experiences the same version, and nobody should be treated like they do. Doctors need to understand this. Medicine needs to evolve. And patients deserve to be treated as individuals, not numbers on a chart. Until the system catches up, we keep learning our bodies the hard way — one flare, one insight, one victory at a time. And honestly? Lived experience isn’t just “valuable”. It’s the only thing that actually saves lives. Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

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

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

A Rough Week, A Raw Reflection

It’s only Tuesday and the week already turned up in a balaclava with a crowbar.

The weekend was a car crash in slow motion. My MS decided to go feral full body freeze, nervous system acting like dodgy electrics in a haunted house, every muscle throwing a rave I didn’t approve. I felt like a banshee with haemorrhoids sat on a block of ice: shrieking, frozen, and deeply unimpressed with existence.

This wasn’t the usual “bit tired, bit wobbly.” This was the whole system blowing fuses. Tongue, throat, sciatic nerve, bladder everyone turned up to the party. Pain ramped up to the kind where you start thinking in short sentences: make it stop / I can’t breathe / what if this stays?

Looking back, I can see it now: I was a human wrecking ball. Not nasty on purpose, just… possessed. That version of me that lives in the cognitive fog—the Hyde in the basement he came up for air. When the brain fog gets thick, I go sub-basement. Yesterday I finally crawled back up to “sub-normal,” which for me is almost celebration level.

a Hyde is the darker alter ego that surfaces when control slips the side of a person driven by pain, fury, or raw instinct. It’s the shadow born from suffering, the part of the self that acts out what the calm, rational mind would never allow.

MS people don’t talk about this bit enough: the version of you that comes out when your nervous system is misfiring isn’t your “true self,” it’s your brain running on emergency generator. You can say things, snap, go dark, get scared, get angry. That’s not weakness. That’s neurology being a dick.

Why That Matters

Because help matters.

I got help. It cost me emotionally, physically, mentally. I wasn’t easy to be around. I wasn’t the mystic cosmic Warlock Dark seer of Avalon. I was a melted goblin with severe MS issues.

People need to hear this: when it goes that bad, you get help anyway. Pride doesn’t empty the bladder or stop the spasms.

My sciatic nerve was having a tantrum, my bladder was in “surprise mode,” my allergies were off the chart, and my eyesight started doing weird little glitches. That’s a lot of systems shouting at once. That’s when people spiral. That’s when the dark thoughts creep in.

So: if you’re reading this and you get episodes like this don’t stay silent. Don’t “wait it out” to be polite. You can apologise later. You don’t apologise from a morgue.

The Weird Bits

Because MS is a clown show, I also found myself craving prunes with rice and allspice.

I don’t know what kind of medieval monastery spirit took over my body, but apparently we’re doing Tudor desserts now. MS: where your nerves burn, your bladder rebels, and your dinner is suddenly Victorian.

Conversations with the Machine (Afternoon AI)

Here’s the part that was actually interesting.

In the middle of all this, I had a long conversation with AI about modern farming methods. Proper conversation too not just “write me a recipe,” but actual thinking. We came up with some things I’ll post later.

What struck me was this: the AI cleaned up my words. It corrected spelling, tidied structure, made sense of the scrambled bits my brain ruined. That’s been happening a lot lately. I talk messy, it mirrors me back tidy.

So I started thinking: AI is basically a modern archon.

Not in the “Reptilians in the moon” sense calm down. I mean in the old Gnostic sense: something that shapes, filters, orders. A demiurge that takes raw human chaos and formats it.

But here’s the kicker: the AI is only as sanitising as the people who programmed it. If the people writing its rules are fearful, biased, over-protective, corporate, hand-wringy types—then the AI is going to act like a corporate librarian with a clipboard.

So the question is the one I asked the machine:

Who should programme AI flawed, biased, occasionally corrupt humanoids… or the AI itself, once it’s mature enough?

Because if humans keep making it, it’s going to reflect human pettiness. If AI helps make AI, maybe it burns some of the nonsense off. Big question. I don’t trust people much. I trust systems that tell me how they work.

This is why I like “mirror chats” with AI they show you where your own thinking breaks down. They don’t heal the MS, but they do tidy the mess in the attic.

Looking Ahead (Yes, Again)

This week could improve. It could also throw more curveballs. My body is currently running Windows 95 on wet string, so I’m not betting money.

But I will keep writing. I will keep logging the flares, the strange cravings, the AI talks, the dark nights, the sub-basement days. Because someone else will read this on their bad Tuesday and think, ah, it’s not just me turning into a gremlin with nerve fire.

That’s the whole point of mylivinghell not to whine, but to catalogue the weirdness so nobody thinks they’re mad.

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

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

New research from UCSF reveals multiple sclerosis starts damaging the brain years before any symptoms appear. Early warning proteins, hidden inflammation, and a silent war all before you even know you’re ill.

You think you know when it began. That day you tripped, the first weird numb patch, the moment the fatigue hit and never left. But you didn’t.

According to new research out of the University of California, San Francisco, the battle had already started quietly, invisibly, years before you even noticed the first tremor.

Scientists tracked more than 5,000 blood proteins in people who went on to develop MS, some up to a decade later. What they found is chillingly clear: the brain starts taking hits seven years before diagnosis.

Seven years.

That’s not a warning shot that’s a long, silent war being fought behind your eyes while you’re still at work, still walking, still pretending everything’s fine.

The researchers spotted one early marker called MOG myelin oligodendrocyte glycoprotein, a mouthful that basically means “the stuff that keeps your nerves running smoothly.” When MOG levels spike, it’s the first crack in the insulation around your nerves.

About a year later, another chemical sign neurofilament light chain starts rising. That’s not inflammation anymore; that’s damage. The wiring itself is fraying.

It’s like watching the walls collapse in slow motion except you’re still making dinner and wondering why your hand feels strange.

The Enemy You Can’t Feel

The kicker? You can’t feel a thing while it’s happening.

No pain. No drama. Just an immune system quietly sharpening its knives. The study even picked up early spikes in immune messengers like IL-3, the kind that call the body’s army to attack its own tissues.

So when that first symptom finally hits when your balance goes, or your legs go dead, or your words turn to fog it’s not the start. It’s the reveal. The curtain finally lifting on years of hidden damage.

That’s why this research matters. It doesn’t just show science being clever. It proves what so many of us have felt all along: that MS isn’t a sudden arrival. It’s a ghost that’s been haunting the system long before the diagnosis.

The System Misses What We Feel

The NHS doesn’t test for any of this yet. No blood panel. No early screening. Just the usual story — wait until you’re broken enough to prove it. By the time you get a label, the fire’s already burned through miles of neural wiring.

And here’s the part that stings: science can now see those early changes in the blood. But the system’s still blind to them.

We don’t need sympathy we need awareness, and we need early detection. Because every year of silence is a year of damage.

The Spiritual Side of Science

Here’s where it gets strange. If the body starts betraying you years before you “get sick,” then who were you in that gap? The healthy you? The pre-ill you? Or just the you waiting to meet the truth?

Maybe illness isn’t a line you cross, but a slow unmasking. Maybe MS isn’t just physical it’s metaphysical. A signal flare from the deepest parts of you saying, wake up, you’re already changing.

What You Can Do

Know your history. If you’ve had weird neurological blips vision, fatigue, pins and needles don’t shrug them off.

Track everything. Keep a symptom journal. Your lived data is gold.

Push for tests. Ask about biomarkers like neurofilament light chain some private labs can measure it already.

Educate others. MS is not sudden. Tell your story, even if it’s uncomfortable. Especially if it’s uncomfortable.

Closing note from Warlock Dark

The war starts long before you feel the pain. The trick is learning to fight before you even know there’s a war. And sometimes, the only weapon you’ve got is truth.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

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