chronic illness rant

⚠️ 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

Hello fellow Humanoids So, it is a dark Tuesday evening and yes, the confusion continues with trying to get me to see a nuro dude It seems that the communications have gone awry and then some. But then again what did I expect where I am concerned? Apparently I have not been transferred to the new hospital and I am with the old hospital.

So I only found that out a couple of days ago. So now I am having to deal with the old hospital. So yes you can imagine how confusing everything has totally got with absolutely everything. So we have my doctor here dealing with one hospital and yes of course it's the wrong one.

So no wonder I've been stuck somewhere since November in this weird system of things. So I have been desperately in need of seeing a neurologist since the ambulance men came out in November. And that plainly hasn't happened even when I have been begging. I have been begging and asking to see a neuro and nothing happened because of the confusion of me asking to move to a new hospital with a stronger neuro team. So, I don't blame my local doctors, I just blame the bureaucratic nightmare that is the NHS with one hospital not speaking to another hospital because their communications don't connect or some weirdness like that. Ah well, never mind.

So, yes, my cognitive fog or brain fog is lessening at the moment, and my autonomic dysfunction is calming down slightly due to my strict dietary control. I also found out something really annoying today that the only clinic in the UK that deals with autonomic dysfunction is private and that I would have to pay. So yeah, that means I'm gonna have to suffer. Oh the fucking joys of it eh? You could not make this stuff up.

The trapped nerve or impacted nerve in my neck shoulder is starting to cause me less grief and I am managing to now sleep. Well, that until is the kitten start screeching because yes, they've come into season again. Oh, the joys. Albertine and I are awaiting the vet's phone call so we can take both the kittens in and have them spayed or seen to whatever they do to female kittens these days. We were having a right laugh remembering when we have had cats and dogs spaded or neutered before and they've had to wear those funny like space helmets. And they're going to look really stupid walking around with their little space helmets on wobbling around the room. And I'm going to video it and I'm going to put it up so everybody can have a right laugh. Also, of course, we're going to go and get them microchip at the same time.

So yes, I have been dealing with the medical people on their own terms as I have been using AI. And AI has had me really clued up on everything and what can and cannot be done. It's amazing how AI has helped me to come to certain conclusions and it really has helped me. So the one thing I do find helpful about AI is the medical side. It really does help, and I'm 110% down with that I can tell you because it's certainly helped me.

So yeah, I may bang on about AI sanitizing everything that I personally say changes my swearing changes what I say, what I mean, etc. To be more understanding for people. I don't like that. I prefer my own raw brain fog. I've got MS and this is how it looks people,, Because you're going to have to deal with it. Yes, I can change conversation. Mid conversation. I can change the subject of the conversation like it's going out of fashion. Sometimes trying to have a conversation with me about one subject. I can be going from one subject to another subject to another subject. And then there's my memory. Oh my God trying to have a conversation with me sometimes is like trying to have a conversation. with a drunk duck.

I suppose the thing that makes me laugh more than anything is when you get the people who see you in your power chair wheelchair and their sort of people that like to pat you on the head and go there there. And then they don't realize what they've unleashed they've unleashed Mr dark who is this. Completely no holds barred. eccentric, Tin foil hat wearing psycho with Progressive ms and autonomic dysfunctionated person who will let you have it both barrels and don't give a shit about it either. Because I have had that happen to me and I find it quite funny when people stare at me and look at me as though I am from another planet. I find it really funny. When you have lived on the outside of society like I have done for the past 40-50 years, you will understand Looking in can be a very funny and worthwhile experience. That's for sure.

So I get the odd one or two people who actually read my blog posts. I'm very surprised indeed but thank you for reading and sometimes I just wonder if what I'm saying makes any sense to anybody seriously. I have joined many MS forums over the years and many places where people with MS go to talk but they seem to just vanish !!and disappear like most of the MS groups in the UK. One minute there there, the next minute there gone.

So, if there's anybody who reads this blog that has any email addresses of MS groups anywhere in the UK or anywhere in the world for that matter, that I can publicly advertise on a separate ongoing blog post.., so if there's an MS group say in Brattaslava, that's just a name out of the air that wants to say, "Yep, there's an MS group there." Well, I'll stick it on up so people know about it. So people can go there, people can meet the people and people can see people because the most important thing, if you have MS, you should be talking to other people with MS. Yeah? Because the more people that get together and chat, the easier it is to deal with the affliction, the illness, the sickness, the madness that we have. Seriously, talking really does help.

Trust me indeed when I say to you, I know many, many people with many chronic illnesses. Many of my friends have passed recently, unfortunately. And what I say is, if you're out there and you want to have a bloody good rant, and you have no one to rant to, you can always rant to me. I don't really care. You can send me an email, ranting. You need to rant. I'm always here for people who've got MS who need help. Remember that, folks, because people with MS understand people with MS. Yeah? People who are starting out on the MS trail, and I know that sounds a horrible thing to say, they need to know the truth of how it can progress. Seriously, I'm prepared to tell the truth, the raw truth, that a lot of people won't talk about, you know?

So, if you have any serious questions that you would like answered privately, I will answer privately. But if you have any questions that you would like to be shared publicly on my blog and answered on my blog, just get in touch with me, drop me a line. All emails and everything will be treated in the strictest of confidence. Why should you suffer in silence? I know I suffered in silence for many years. Sometimes knowing the truth is being better than being gaslit. !!!!

As ever, sending anyone and everyone who reads these words, peace, healing, love and light, no matter whom or whatever you are, or wherever you're from.

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 help.

I wasn’t always like this. I used to be strong. Fast. Loud. Capable. I used to eat food without fear. I used to walk — walk — without planning it like a goddamn military operation. Now?

Now I’m a husk in a wheelchair.

Today I spent over an hour staring at a folder on my computer — trying to find a simple book. Something about natural supplements. Something I used to read all the time. Something I knew was there.

But I couldn’t find it. I couldn’t remember.

Do you have any idea how that feels? To look at a screen like it’s an alien language? To feel your mind slipping, like water between cracked fingers, and no matter how hard you concentrate — it’s gone?

That’s what MS does. That’s what this silent, creeping parasite does. It doesn’t just rob you — it laughs while you try to pick up the pieces.

I tell people to hydrate. To eat right. To care for themselves.

You know what I forgot today?

Water. Something so basic. And I forgot. Again. Because I’ve been sweating through heatwaves like a corpse left on a radiator, and food — if you can even call what I consume food — feels like an enemy waiting to betray me. I’m vegan, not out of choice, but because my gut is now a trauma victim reacting to flavour like it’s a war crime.

You smell the wrong fat, and your body explodes. Not metaphorically. Not dramatically. Literally.

I’ve shat myself in public. I’ve thrown up so violently I burst blood vessels in my face. I’ve passed out mid-meal. And still, people say,

“But you look okay.”

“You’re just being dramatic.”

“Have you tried yoga?”

I’ve begged for help. The NHS? Overrun. I’ve asked for face-to-face support, and they treat me like I’m asking for the moon. Phone calls only. Delays. Waitlists. Voicemails that never get returned.

I’m still waiting for the wheelchair team. Still waiting to move like a human again.

My independence is shrinking by the hour, and the only thing anyone offers is “understanding” — but never action.

Let me tell you a little story. A receptionist once told me to “take a seat.” I rolled in, in a wheelchair, and she still had the nerve to look at me and sneer. She knew what she was saying. She knew exactly what she was doing. I looked at her and said:

“Do you ever get off your commode?”

Then I rolled out.

With a smile that cost me a week of energy and a lifetime of grace.

You want to know what it's like?

Let me ruin your day.

I hold my grandchildren and feel nothing. Not joy. Not pride. Not even skin. My arms are numb. Their warmth doesn’t reach me anymore.

I touch my face sometimes just to check I’m still there.

I speak, and my voice comes out slurred and slow like I’ve been bottle-feeding on gin all night.

My brain? Electrical storms. Static. Confusion. A battlefield of thoughts that never reach the finish line.

My legs betray me.

My bladder abandons me.

My stomach punishes me for trying to enjoy anything.

And my bowels? They’re on their own sick timeline.

I piss myself. I shit myself. I cry silently. And I survive.

And do you want to know the real kicker?

I don’t want this.

I never asked for this.

But I’m stuck in this skin.

And the world doesn’t care. Not really.

I don’t get empathy. I get pity if I’m lucky — disgust if I’m honest.

I don’t want your sad smiles. I want my fucking life back. But it’s gone. And I’m still here. And this is what’s left.

So no — this isn’t some “inspirational post.” This is not a lesson in gratitude or some Pinterest bullshit. This is a war cry from the ruins. This is rage. This is grief. This is me — raw, cracked, hollowed, and still showing up.

Hate me? Fine. Dismiss me? Go on. But you don’t get to pretend this isn’t real.

This is chronic illness. This is my living hell. And it does not come with a refund.

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