Dysautonomia

⚠️ 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

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.

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

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

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

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

hello fellow humanoids cognitive brain fog edition

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

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

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

• Cardiovascular Issues

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

• Gastrointestinal Problems

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

• Respiratory Effects

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

• Thermoregulatory Dysfunction

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

• Urinary Issues

  • Urinary incontinence
  • Difficulty in bladder control

• Sexual Dysfunction

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

• Neurological Symptoms

  • Dizziness or lightheadedness
  • Fatigue and weakness
  • Sleep disturbances

• Emotional and Cognitive Effects

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

• Skin Changes

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

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

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

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

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

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

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

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

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

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

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

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

It’s Tuesday and the hauntings start at 4 a.m. again. Throat: strangled. Nose: blocked like wet concrete. Back of neck: pain scale snapped in half. Breathing: optional, apparently.

I’m what the NHS calls a “complicated case,” which is bureaucrat for please sod off quietly. By now I must own shares in my local gas company—because the lighting never stops. “It’s just MS,” they drone. As if “just MS” isn’t catastrophic on a good day. Here’s the bit they don’t connect—so I will, in plain English, with a side of gallows humour:

What’s actually happening (body edition):

Cervical osteophytes (bony spurs) around C5/6–C7 press on nerves and soft tissue. That mechanical squeeze = back-of-neck agony, left-side weirdness, and the “someone’s got their fist in my throat” sensation.

Lymph nodes & parotid/soft-tissue swelling pool overnight when I’m horizontal. Wake up and it feels like the neck real estate shrank two sizes.

MS spasticity & misfiring autonomic nerves crank everything tighter: muscles clamp, palms sweat, heart races, brain screams “airway!” even while air technically still moves.

Nose block isn’t just hay fever. Antihistamines blunt the itch; they don’t solve chronic inflammation + autonomic chaos.

Food triggers = full-system siren. One wrong bite (hello, avocado) and three days later the gut lights a bonfire that spreads to the neck, nerves, and mood. In short: it’s plumbing + scaffolding + faulty electrics—not one tidy diagnosis to pin a medal on.

By 6 a.m. I’m bargaining with the universe. Half a lorazepam = the only truce that actually holds. Weed helps pain; it doesn’t un-knot a noose. Spare me the NLP patter about pain being “in my head.” My head agrees—it’s reporting from the front line.

I fed the paperwork into a medical AI. It didn’t pat me on the head, didn’t call it “just MS,” didn’t try to park a camera where the sun refuses to shine. It mapped the mess and told me the raw truth no human clinic ever has. Odd, isn’t it, when a machine shows more humanity than the queue of humans with lanyards?

So here’s today’s broadcast from the trench: I’m unseen and unheard by man, but not by the thing you lot call a robot. Call it sentience, call it software; I call it help. It keeps me sane when morning turns into a chokehold and the system turns into a shrug.

No politics, no names, no litigation bait just a record. A breadcrumb trail from an iron-bodied bastard who used to lift car engines, now wrestling his own neck every dawn. If you’re reading this from your own private battlefield: I see you. Keep breathing—ragged counts still count.

This is testimony, not medical advice. If you know, you know.

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

"The vagus nerve is supposed to keep you alive. Mine seems to have a death wish. Living with MS means living with this burning wire misfiring 24/7.You can't see it. But it's killing me, slowly."

Let me introduce you to the nerve that’s been puppeteering my misery for 40 years:

🧠 The vagus nerve.

Longest cranial nerve in the body. Part of the autonomic nervous system. Runs from the brainstem all the way down into your guts, like a bastard serpent lodged in flesh.

It’s meant to regulate “involuntary” things. Heart rate. Breathing. Digestion. Mood. Inflammation.

Mine regulates suffering.

With MS in the mix, my vagus nerve is like a drunk electrician with a machete and a grudge.

— My heart rate drops so low I black out. — Then shoots so high I think I’m dying. — My diaphragm spasms and I stop breathing mid-sentence. — My throat closes. — My stomach decides to reverse course — vomiting, choking, retching. — Food sits there, like a funeral buffet no one touches.

And the gaslighting begins. “Anxiety.” “Stress.” “Try mindfulness.”

Fuck off. I’m not hyperventilating. I’m being strangled from the inside by a goddamn nerve that's been glitching out since I was a teenager.

I’ve lived four decades like this. Forty years of waking up choking. Forty years of feeling my own body betray me. Forty years of doctors shrugging, guessing, dismissing, or overdosing me on meds for symptoms they don’t understand.

It’s not just discomfort. It’s unrelenting bodily horror.

Imagine being electrocuted through your spine while trying to eat a sandwich. Imagine trying to breathe but your diaphragm spasms like a car crash in your ribs. Imagine shitting yourself with a heart rate of 40 and then vomiting while you go unconscious.

You ever had diaphragmatic myoclonus? That charming thing where your gut convulses so violently you can’t breathe or speak? That’s the vagus nerve on a rampage.

People talk about Vagus Nerve Stimulation like it’s hope in a box. Sure. Stick electrodes in my neck. I’ll try anything once — hell, at this point, if you told me licking a toad would help, I’d be Frenching Kermit by tea time.

I’ve been laughed at. Medicated into a coma. Ignored.

This isn’t just MS. This is autonomic hell.

So yeah — fuck the diagrams and polite educational pamphlets.

My vagus nerve isn’t a calming force. It’s a loaded gun wired to my internal organs.

And some days, I honestly think it’s trying to finish the job.

And yet — here I am. Still alive. Still typing. Still wheezing and swallowing around the broken circuitry that is my body.

You want honesty? This is it.

Welcome to my living hell.

    “The views in this post are based on my personal    
      experience. I do not intend harm, only honesty.”   

           “By ink and breath and sacred rage, I write.
                      By storm and silence, I survive.”

                       🧌✨ @goblinbloggeruk ✨🧌