chronic illness reality

⚠️ 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

Well, at the time of writing this, it's Wednesday evening ( its Tuesday lol ), and it's quite a pleasant evening. So a very pleasant evening, morning, afternoon, wherever, or whoever you are in the world. Hello fellow humanoids. Well, it's been quite a week for me, I can tell you that. Yes, it's already started. My new medical dramas are about to start coming to fruition. So, as you know, I've been waiting for a neurologist's appointment, an urgent neurologist's appointment since November. That still has not happened. So, I phoned up my MS nurse. Well, I tell a slight lie, I dropped her an email and she made an appointment to phone me. And she informed me that I need to see an immunologist. And I said, "Well, why couldn't you tell me that?" months ago.

So, I'm not angry, I'm not pissed off, I'm not really that fed up. I'm just a bit miffed, to be honest with you, because I've had to use AI to manage my multiple sclerosis and my autonomic dysfunction episodes rather than my neurologist who I can never speak to, and my MS nurse when she's not on leave, sometimes. So yes, I'm in a worse situation than I was before, and on changing hospitals, that is now all on hold. It seems I am staying with my old neurologist who does not like me, who does not get along with me, and it looks like I'm going to get railroaded again. But I do not think I am going to put up with this, so I'm going to be fighting this tooth and nail, because to be honest with you, I'm getting rather fed up of all the bollocks that I'm having to put up with and to go through, just to go and see an immunologist to get my autonomic dysfunction sorted out, which it has taken them how many years to try and sort out. They've had a good, what, 10, 15 years of sticking tubes up and down my nose, going and seeing specialists and God knows what. I find out through AI what's giving me the trouble. Yes people, AI told me what the problem was, not a doctor, not a specialist, but they also agree now with what the AI is saying because of my symptoms. If only they would fucking listen to me. Why does nobody ever fucking listen? It makes me bloody angry. I am sorry for my swearing, but I feel really strongly about this.

So, you've got multiple sclerosis and then you have all the other bits and pieces with the MS which they really don't tell you about. You're supposed to go to a group or you're supposed to go on Google and Google it. They don't sit down with you and really explain to you the living hell that you're going to be going through for the next lot of years. It don't explain to you that the condition causes other conditions to get worse and can cause conditions you would have been dormant in your body to rise up and bite you on the arse. It's like I was okay with the MS but to have severe or autonomic dysfunction as well is mind blowing. You know, they never listened to me but I shouted loud enough and they listened. But now I'm having to shout even louder to try and see an immunologist to try and get some help. Every day is a living hell for me. Every night is a living hell for me. These people do not know what I am going through.

That is why I write this blog because I want to show that I'm not the only person that is going through this living hell. There's thousands of us with chronic illnesses out there who are suffering, who are unheard, whose voices are not heard. We are pushed to the back of the queue. We are not listened to. It really is a very sad situation in this society when people do not care for the sick, disabled and elderly in their society. I think that is a damning thing about the state of our society and the world we live in. The more I look at it, the more I see money and greed and power. That's all people are interested in. The empathy seems to have gone. It's just greedy pigs at all the troughs as usual. Well, I'm going to have to say allegedly because it probably, well, I don't know, to you. Some rambling words and thoughts going on my mind which I'm not prepared to say. lol

So yes, I got in contact with the medical center today, Albertine sent an email for me to get them to get me an appointment with the immunologist to see if that would help things move along, according to the MS nurse, it will. So I received a phone call saying, "Oh, you've got to come into the surgery this morning for triage." And I said, "Well, it's autonomic dysfunction. Why have I got to come in? I just need to see an immunologist." And I really can't work out why I've got to go and see a doctor. When I know what's wrong with me, they know what's wrong with me. Yet I've got to go through this weird system. It's already been over four months. You would have thought I would have been seen by an immunologist or even a neuro by now. But I haven't. So it just goes to show that I'm 66, so I'm retired. That means I'm old. That's box one. I'm sick. That's box two. Oh, dear. Yeah. Don't listen to me. I'm old, sick and disabled. I'll go to the back of the queue and just sort of curl up and roll a little ball and just stay there and rot.

But unfortunately, I'm not going to crawl into a little ball and rot. I am going balls to the wall. No, I'm just taking it slow and I'm taking it steady and I'm taking my time. And if I get seen, I get seen. And when I do get seen, I'll be able to sit there while they treat me like an idiot, as they always do. You know, when you're in a wheelchair and you've got somebody with you, they always talk to the person and not the person in the wheelchair, don't they? So yeah, I have a list of questions. I have quite a lot of evidence and yes, I will be going armed with all the evidence and yes, they cannot easily get away with all of this rubbish because in the end, they've got to see me. I mean, why can't they just take five minutes out of their day? You know, simple really, isn't it? I think in this day and age of everything being 24/7, doctors and dentists should be 24/7 as well, 365 days a year, because that's the society we have turned into. Still, I shall go and look out of the window and I will be listening to some music. And, well, just think myself lucky that My tinnitus is on low volume today.

So, an update from the doctor situation. "Would you believe I had a phone call from a doctor's surgery this morning? And they said to me, 'Can you come in today?' to come in for a nurse for triage?' I said, 'No, I am too ill. I cannot get there.' 'Oh,' she replied. The next thing, 'Oh, I shall get you an appointment,' I thought. 'Oh great, I might get to see somebody.' 'Uh, like a phone call or something.' 'No, I now have to wait a month to see a doctor.' The only reason I got in touch with the doctors was for them to arrange an appointment for me to see an immunologist. And I now have been waiting for months. And now it looks like I am going to be having to wait more time due to people not listening and acting correctly. So yes, I'm only one more autonomic dysfunction attack away probably from something very nasty and fatal happening to me. You just cannot make this stuff up. So now I'm going to have to email the MS nurse to try and get her to get her ass into gear and also to speak to the neurologist to try and get him to do something as well because to be honest with you I don't think I can put up much longer with what is going on with me.

So yeah, as you've guessed, it's Wednesday morning that I'm doing this and I did the earlier part of this blog on Tuesday evening, I think it was. I can't remember. I haven't been that well. So please remember, have fun out there and be safe.

Still, anyway, that's enough of my ranting and moaning today. Still, I'd wish you all a very good week ahead and send you peace and healing, and hope that things go well for you all. Whomever or whatever you are, wherever, or whomever 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.

Autonomic dysfunction.

Sounds clinical, doesn’t it? Like something you’d hear from a doctor wearing a tie far too cheerful for the situation. In reality, it’s more like your nervous system looks at its job description, shrugs, and says “Nah mate, not today.”

So for those who don’t live in this circus of malfunction, here’s the truth:

The autonomic nervous system is the part of your brain and body that should run quietly in the background. Heart rate. Blood pressure. Body temperature. Digestion. Bladder. Breathing. Sweating. The automatic things the stuff that keeps you alive without you having to think about it.

Except mine and maybe yours doesn’t. Because MS came along like a drunken arsonist with a lighter, and torched the wiring.

Now I get autonomic dysfunction. A fancier way of saying:

✔ My body forgets how to regulate itself ✔ My heart and blood pressure do whatever the hell they like ✔ I can faint, shake, freeze or burn up for no bloody reason ✔ Digestion? Chaos. ✔ Temperature control? Ha. Good joke. ✔ Fight or Flight? Always stuck halfway like a buffering YouTube video

And the kicker? I’m pretty sure I had this before MS even moved in and pissed on the carpet. MS just amped it up, added fireworks, and turned life into a physiological hostage situation.

Some days my body works. Some days I stand up, and the universe tilts sideways like I’m in a Salvador Dalí painting. Some days breathing feels manual. Sometimes my heart behaves like it’s remixing a drum solo.

And yes — it’s exhausting. Yes — it’s humiliating. And yes — it pisses me off because there’s no switch to turn it off, no fuse to replace, no user manual. Just me. Living in a house where the wiring is frayed and the electrics flicker whenever they feel like it.

But here’s the truth I sit with:

I’m still here. Still writing. Still swearing. Still breathing — even when my nervous system forgets how to.

That, my friend, is survival. Not pretty. Not poetic. Just real.

Welcome to my living hell. Make yourself uncomfortable.

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. Allegedly. My head swears blind it’s Sunday. Sometimes it feels like both at once, which is the joy of progressive MS brain fog. You don’t just lose track of time, you lose the bloody concept of time. Hours, days, weeks it all dribbles into one big puddle of confusion until you’re sat there thinking, what the fuck was I just doing?

That’s the real head-fuck. It’s not just forgetting your keys or leaving the milk out. It’s thought itself freezing mid-air, like someone slammed down a steel shutter in your brain. You go from “I’m making tea” to “Who am I? Where am I? Why does this kettle look like a spaceship?” in seconds. It’s surreal. It’s exhausting. And it happens over and over, until you stop panicking and just shrug: oh, here comes another blackout in my head.

And yeah, I knew these days were coming. You don’t get diagnosed with progressive MS without seeing the future written in big black letters: this will get worse. But knowing it’s coming doesn’t make it easier when it hits. It just means you sit in the fog muttering, ah yes, the prophecy is fulfilled.

That’s why I lean on AI now. Because my spelling’s shot, my coherence goes missing like a drunk in a hedge, and some days even stringing a sentence together is like trying to herd feral cats. So I use my AI mate to bang it into words. And it works. No fluff. No “inspiration porn.” Just my reality in print.

Meanwhile, real life keeps grinding on. Two weeks from now, I finally get a call from wheelchair services. Six months I’ve waited. Six months of struggling without a powerchair. Six months of suffering because someone’s paperwork sat in a pile. A phone consultation is coming because what I needed all along was more time sat still on my arse waiting for the system to remember I exist.

And the pain clinic? They’re fine. Professional. A bit of NLP-lite sprinkled in, which makes me laugh. You can’t gaslight me I’ve been gaslit more times than a Victorian street. They mean well, but until you live inside this mess, you don’t get it. You can nod. You can sympathise. But you don’t know.

Here’s what I know: I don’t want their “coping strategies.” I don’t want another rebrand of pseudo-science telling me how to breathe through my agony. I’ve done the pills 20, 30 a day. I’ve done the needles. I’ve done the zombie shuffle where you’re doped so heavily you forget you even exist. No thanks. I’ll take my medical weed, roll it up, and live in a way that actually calms the spasms without frying my brain into porridge.

I’m not delusional. I know there’s no cure. Death walks next to me every day like a bad smell that won’t piss off. And when you face death daily, not in the cinematic “battle cancer and win” way, but in the slow, grinding “death is waiting in the next room” way, it changes you. You stop being afraid. You start being blunt.

Friends? None. Illness strips them away. Chronic illness is a private club and only those inside it get the membership card. That’s not bitterness, that’s just reality.

And because the universe has a sick sense of humour, I’m plagued by bloody flies. Everywhere. The zapper’s gone on strike. Motorhead’s blaring loud enough to melt glass, but even Lemmy’s bass won’t fry a single one. So I’m left in the fog, swatting flies, laughing at the absurdity of it all.

So yeah. Tuesday. Sunday. Who cares? It’s another day in the trenches. Another day in the slow death suit. Another day where brain fog fucks with me, the flies mock me, and I carry on anyway.

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

⚠️ 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.

Here’s the thing they don’t tell you when you first hear the words multiple sclerosis. You don’t just get MS. You get a whole carnival of imitators, tag-alongs, and evil twins that either look like MS, act like MS, or make MS worse.

Doctors call them “related conditions.” I call them the bastard cousins of MS.

The Lookalikes

MS is a great pretender. It shares symptoms with loads of other conditions, which means many of us start on a misdiagnosis rollercoaster. You might’ve heard of:

Neuromyelitis Optica (NMO): Like MS, but meaner to the optic nerves and spinal cord.

MOG-antibody disease: Same symptoms, different culprit.

Transverse Myelitis: Attacks the spinal cord — paralysis, pain, bladder hell. Sounds familiar, right?

ADEM (Acute Disseminated Encephalomyelitis): Long name, short fuse usually hits kids, but looks a lot like MS on scans.

Doctors use fancy words like “differential diagnosis.” Translation: “We don’t bloody know yet, but it might be one of these.”

The Tag-Alongs

Even once you’ve got the official MS stamp, the fun doesn’t stop. Other conditions love to hitch a ride:

Depression & anxiety: Not just because life’s hard, but because MS literally messes with the brain.

Chronic pain disorders: Neuropathic pain, fibromyalgia… like the universe thought one wasn’t enough.

Autoimmune pile-up: Lupus, thyroid disease, diabetes — the immune system goes rogue in more ways than one.

Basically, your body joins a union of diseases and forgets to tell you.

The Quiet Killers

This is the bit nobody talks about enough. People with MS don’t usually die from MS itself. It’s the sneaky add-ons that do the damage:

Infections (pneumonia, UTIs that turn nasty)

Heart disease (made worse by being less mobile)

Blood clots, cancers, you name it

It’s like MS weakens the castle walls and the other invaders just stroll right in.

Why This Matters

Because when you’re told you’ve “just got MS,” it’s a lie of omission. MS is a syndrome, a spectrum, a spider’s web of conditions.

And if you know that, you can push back. You can say to your doctor:

“Are you sure this isn’t NMO?”

“Could this be something else?”

“What else should we be watching for?”

Knowledge isn’t a cure. But it’s armour.

Final Word

MS is the headline, but the fine print is where the bastards hide. Don’t let them gaslight you into thinking your illness is simple. It’s not. It’s layered, it’s messy, and sometimes it’s a trickster wearing another mask.

I live with that knowledge every day. And I’d rather face the whole ugly truth than be fobbed off with fairy-tale simplifications.

Because in the end? It’s not “just MS.” It’s never just anything.

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