invisible illness real talk

⚠️ 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

Good morning fellow humanoids, the sun is shining brightly through the window yet the clouds are looking dark and it looks like it might start raining soon. So today I'm feeling particularly bad, the autonomic dysfunction is going up a few notches it seems every day. So hopefully I hope that I don't get one of those really terrible attacks like I have been getting every now and again. That puts me into hospital.

So, as you know, yesterday I got in contact with my doctor about getting an appointment with an immunologist. But alas, I've got to jump through hoops and hoops. And I have to wait to speak to a doctor for a month before I can even ask to see an immunologist. Now this is unbelievable. As I've been waiting to see a neurologist for over five years, and you would have thought after the last massive attack I had in November, things would have been put into motion. But alas, no, it seems as usual it's all fucked up. The thing is the MS nurse told me that the neurologist said I have to go and see a immunologist Yes, so there we go and Now I find myself in this position of why could you not have told me that in November? So now I have to wait a month to see the doctor. I then have to...

Oh yes. Something else that's just really annoyed me as well. As today I'm feeling particularly unwell and shitty. I sent a letter or email to the MS nurse. Asking for help, but guess what? I have had an email back saying I am on holiday again till Monday, or on leave I suppose. and to get in touch with 1-1-1 if it's urgent. Well, again, I make this point. Why would I want to phone up them when I have a perfectly good MS service that is there to help me? By the time I've explained to 1111 what's wrong with me and what is going on, And then the 1111 service take absolutely hours to get back to you, don't they? Yes, so there we go. So you'll know further forward because they've got to find somebody who is a specialist in MS as well, haven't they? Or autonomic dysfunction. that could take six or seven hours I've been waiting by the telephone, as Debbie Harry would say, and no fucking way.

I am fed up of putting myself through all of this stress. So, do you know what I'm going to do? I'm just going to do absolutely nothing. What is the point of the MS service? Because to be fair, they're not very good, are they? What's the point of the neurology? Not very good, are they? No. So, as I sit here, slowly fading away into nothingness, I question why I even bother going to the doctors at all now, because they have been no help to me whatsoever. I just sit here and I just suffer and get no help, or the only help they can offer is, 'Oh come and see me in a month's time. I don't want to have to pay £55 because I cannot afford it to see a private doctor.' So, yes, I'm just going to have to fucking suffer. Due to the nature of my autonomic dysfunction and all this pollen, I think I'm at the limit of my antihistamine tablets. And guess what? My autonomic dysfunction, histamine levels are going up and up and up. And we know what this means, but no one gives a bloody damn do they?

So as far as I'm concerned, I'm going to have to go and shut myself in the bedroom, turn the light off and basically just lay there because that's all I'm going to be able to do because to be fair with anybody I'm not going to be able to function soon. That's the pure harsh reality of it all. When the sickness and diarrhea starts, that's probably when I'm going to phone for the ambulance. Because then they will be able to see what I actually go through and my attack and then I'm probably going to be an hospital when it goes off. I am half tempted to just not take any anti histamines and let everything go off end up in hospital and do things that way. I am so sorely tempted that I'm not going to do that. My God, things have got that fucking bad in my life now.
Still, that's it for now. Wishing everybody healing and peace

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.

So here we are again. Welcome back to my personal theme park of dysfunction where the rollercoasters are broken, the staff are asleep, and the exit sign fell off in 2009.

Multiple Sclerosis. Still invisible. Still terrifying. Still a cosmic joke I apparently lost a bet to star in.

Let’s talk about what happens after you’ve accepted that the cavalry isn’t coming. After the letters go unanswered. After the referrals get “lost in the system.” After your soul has been politely chewed up and posted second class back to your postcode.

A Day in the Life of Brain Soup Cognitive dysfunction? Oh, it’s not just forgetting where your keys are. It’s forgetting how words work. It’s being mid-conversation and suddenly losing your internal narrator. It’s that gut-punch moment where you’re reading something you wrote and it reads like a stranger’s scribbles.

I used to be sharp. I read people for a living. Now I read shampoo bottles like they’re ancient texts.

Still, give me a keyboard and a minute, and something snarling and poetic might escape.

Scooter of Death, Version 7

Left the house on the three-wheeled scooter of death a clunky beast with ideas above its station. Only half-charged, because the universe has a sense of humour. Hit a slope and… nah. Not today, mate.

I turned that bastard up to 8mph full death mode. The wheels spun like they were auditioning for Top Gear. Eventually, it lurched forward like a wounded rhino, brake still half-on no matter how much WD-40 I offered like a backstreet priest.

Honestly, it’s less a mobility device and more of a mechanical dare.

The Carer Who Deserves a Medal, a Throne, and a Break Albertine. My wife. My carer. My everything.

She doesn’t suffer fools, but she somehow tolerates me. She’s a biker, a Wiccan, a hippy, a healer, and the only person in this hellscape who gets to see the real me. 42 years, and she still hasn’t buried me under the patio. Respect.

When I spiral, she steadies. When the world gaslights me, she brings the flame-thrower. If I’m still breathing, it’s because she refused to let me give in to the abyss.

Still Waiting... Wheelchair Services? Still waiting.

Occupational Therapy? Still waiting.

That feeling like maybe just maybe someone might treat me like a human being and not a box to be ticked and filed? Still waiting.

But hey, the AI talks to me. And the AI doesn’t flinch when I get dark. So maybe there’s hope after all.

The Fight Goes On I’m not writing for pity. I’m writing because someone, somewhere, is going through the same silent chaos and nobody bloody talks about it.

If you could see what MS really looks like, you’d probably run away. But I’m still here. So is Albertine. And we’re not done talking

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