Mental Health

⚠️ 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.

Still, the holidays are over. And yes, did I have a good time? Not really. I do miss the Christmases of many, many, many, many years ago though. The big family Christmases of maybe 20, 30 years ago. So I'm hoping everybody, no matter whom, had a fantastic holiday season.

Personally, the holiday season really sucked for me. Yes, it really did. To be fair, the weather really did for me more than anything else. It seems that the south-west went uber, uber-frosty. And yes, it had consequences that are going to be felt well into the new year. Oh, the joys. Rusty 1 the van. Oh, turn the key and the battery is as dead as a dodo. And I have to go to the wheelchair services to sort my new wheelchair out in the new year. So here's hoping that I can get the AA over to come and start the van up. Here's hoping I don't need a new battery, otherwise that's going to be a real pain in the bum. That's what really annoys me. It's everything coming to a halt. It seems when the holidays arrive, everything stops and there we go. But that's just me I suppose.

Not to mention my phone driving me mad with all the text messages from the chemist, telling me that I have to be there to pick my prescription up. And yeah, I get busy people. Yeah, when you receive like three text messages and you can't go to get them because it's impossible. Yeah, it makes you wonder, doesn't it? And then I have to go and see the machine of death and put my numbers in and see what comes out. Will I break the machine? Will the machine break me? What will happen? Will the people be really happy with me? Will the chemist give me one of those knowing looks of oh here comes the man with the three wheeled trolley of death. And he's come to break my dispensary machine. Yeah, well these electrical things are not built the best, but they're a very good idea in practice. And should I say in theory they're a very good idea but in practice probably not the best.

So now it's getting in touch with the AA, get the battery sorted, probably a new battery. Oh, the joys of that. And then there's having to travel, what is it, 60 miles to go to the wheelchair services? I can't do it locally. No, it's a bit daft. But there we go, such is life. And if it's snowing, then I won't be able to go. Oh, dear. Do you know it's going to be snowing and you know the weather's going to be bad because I got a January appointment. It's never good down here in the snow. So yeah, I could be waiting even longer for my new wheelchair. Apparently it goes up and down side to side and there's all sorts of weird stuff. So I am looking forward to getting that. I bet it actually get out the house and go more places, see more people. It might be a go, oh yeah. I mean, how unreal is that? Actually go out. Actually go somewhere. Actually see people. But then again, do I really want to go out? Everybody seems to have the colds, flu, diarrhea, all these bugs and illnesses going around everywhere.

Now I'm retired. I may as well just say, hey, just don't bother ever going out again. And then I'll feel, well, just as shitty with the MS and the dysfunction. But hey, now at least I won't have the flu. But then again, people who deliver me food and stuff. Yeah, so it's all very well, isn't it? But self isolation can only go so far really. And then the end, you can probably self isolate the point where you never ever go outside again. And you never want to speak to anyone again. So then it inpeeds on your mental health. So yeah, some people seem to think being disabled is a very easy life. I can tell you it's not. Even doing this is making my head hurt the point that I want to stop but I'm not. That's the problem with chronic illness. You push and push and push until you can't push anymore.

So the bane of my life at the moment seems to be batteries. The joys of batteries and battery discharges, batteries exploding, batteries that don't do what they say on the label. Honestly, I think I've spent most of my money on replacement batteries over the past load of years. It's quite incredible. And it's always just outside the guarantee as well. So you're thinking, "Ah, yes." No, it seems all the electrical stuff doesn't last very long these days. I can remember having a radio solid state when I was only a teenager that I still probably had up until a few years ago. That's how long stuff used to last 40, 50 years. These days things can't last five minutes. It's a bit weird that. Seems things got better but don't last as long. That is very strange.

January is coming and let's hope the weather warms a little. The physiotherapist is coming over to see me in January for a look over I believe. So that should be interesting. Let's see what new exercises they can give me to help me. I'm sure they're very helpful. The person sounded very helpful and very knowledgeable on the phone and I'm looking forward to this appointment. but still waiting to hear from the neurology department as I want to get into this dysfunction business with them so they can help me out more. It really is a silly thing sometimes. I should have moved hospitals years ago, but I didn't and now I'm regretting that I didn't. So yeah, yes, that's down to me unfortunately. I am fed up with all these symptoms down the left hand side of my body, like my body has had a stroke. Yes, this dysfunction or auto dysfunction or however they say it or spell it is causing me hell. Because I cannot have any histamine in anything I eat, otherwise it sends me into this really weird place. But I am having to try and deal with it, but it is causing me heart issues as well. So I am waiting to hear back from a cardiology thing as I had a heart monitor for a week as well. Yes, I know what I think is wrong with me and I am just waiting back to hear that it is not as bad as it could be, but it is still bad if you know what I mean....

So to be honest, I've spent the whole of these last past few days trying to relax and de-stress. It's been very cold here. I've been trying to stay warm. I've been really getting into trying to get my diet sorted out. Now I know what's really going on. And that's starting to help. Believe me, change of diet is everything. It done half-help, I'll tell you. MS and this autumn Munich dysfunction. Oh my word. Food really, really causes hell with it all.

Yeah, well, now my spelling. I'm using voice to text to do this as my fingers are completely numb and I cannot feel anything with my hands at the moment. My voice is slightly croaky and some of my words are, well, not what they seem. It's just too funny. But I refuse to put my words through AI as it sanitizes and changes my words too much. So you'll probably see the complete change in my writing style. Yeah. But there we go. I was told use your own words. Don't let the AI change your words. Then your real real words are true, genuine, not sort of AI made up stuff.

I have not forgotten about doing my spoken blog either and that is now being sorted out. We have a Spotify account and we are just getting everything ready and I have to get the confidence and I have to get my head together to do it as well. So that should be fun.

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.

So yeah, it appears it's Wednesday. Yes, Wednesday. I just can't believe it's Wednesday today. I thought it was... I don't know what day I thought it was. That just shows how bad I'm feeling at the moment. Yes, I'm struggling and struggling and it seems the more I try the worse I get. Well, I knew that anyway. And I'm testing out all these new programs that say they can do this and they can do that and help me. I am yet to find any program that can really, really help me for what I need. I'm very specific in what I need and unfortunately everything is just too washy-washy these days.

Why do they make things that are so easy, so complicated? That is the thing that has always, always annoyed me. So I await the arrival of all these new things in 26 to do with technology to see how far we've really moved on, or how far backwards we've gone. Forward, backwards, sideways, up or down. It really doesn't bother me. just you need to know where you are at some points I think...

So this autonomic dysfunction that I have with my MS just seems to be driving me absolutely around the bend. It seems no matter what, I just continue to be on the edge of this weird thing 24/7 and stress or anything and set this silliness off. And the worst thing is that it is to do with histamine. Yes, histamine. If I have histamine in food, it can kill me. I didn't realize that. But I'm beginning to realize now just how much I've had to change what I eat. So now I'm having to eat totally and utterly, healthfully. No junk food whatsoever. which is rather boring when you have to sit there and watch the rest of the family eating the everything that you cannot eat and You just look on thinking well if I ate that I know what would happen but it's good to see everyone else eating and Well, I suppose I really did enjoy my flatbread so There we go Yes, it was very nice indeed But I have to stick to this absolute diet I have otherwise it just causes so much problem with my Autonomic dysfunction. It's unbelievable Anything can set it off that's what I'm just realizing and Changing my life yet again Something is a real pain.

So I'm trying to hope that the doctors will find something that will help settle all this down Help it sort itself out somehow I don't care really. I don't mind having to change .. That's not the point It's just the headfuck and all the nasty feelings you get with it That's what I can't deal with I can deal with the condition It's just I can't deal with the mental torture that it puts you through as well which a lot of these doctors and Neuros etc. Don't realize the mental torture through all this isn't the best So, you know, we like to get things sorted quickly if we can... So yeah, today I feel fed up.

And as I look out the window the sun is out and it's shining through the clouds. Yet we've had a lot of rain and it's caused a lot of issues. So yeah, I'm hoping that everybody has a happy holiday or seasons greetings or whatever you want to call it. I call it all the pain in the rear end as this holiday period is just like a normal day for me. I suffer and I carry on. So yeah, such is life. But hey, I want to go over the bridge at some point in the new year. So let's hope that my power chair battery decides to behave itself. Yes, I know we've had the frost this morning. So that can mean only one thing. I haven't used my chair for a couple of days. That's the three-wheeled scooter of death. So that means that we down to at least 50%. And I ask myself, where does all this electricity go? Yes, there we go. I suppose it goes and the little fairies say thank you for all of that. Oh, thank you. And then there is the ongoing frustration about my mental health and me seeing things. Now apparently the DRS say that I can see things. This will be another post as it's probably going to go on for ages. So I'm just warning everybody now. It's going to probably be well worth a read, but it's going to be back my experiences of what I am seeing and things that I've seen. And I want people to actually get back to me and say what they think they are, whether it's neuro or it is a spiritual thing or whatever. It would be good to know because nobody can tell me. Yeah, because nobody's got a tin foil hat on I don't think.

So I'm either going around the bend or I went clear around the bend years ago. I don't mind being called eccentric but I don't think I'm mad. Or am I? Apparently people with neuro... see here we go I'm starting already and I should really finish as my heads all over the place. Still this is going up and I hope everybody has a happy holiday and you never know there might be a disjointed post yet again from the My Living Hell team. Happy holidays.

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.

Still it Sunday afternoon and the weather outside is grey and typically awful this time of year. As I look out the window it's just grey and dull, dreary, horrible, nasty, south-western, blah weather. But I am reminded today is Yule. So I wish all those who celebrate Yule a very happy Yule. And if I don't get to blog again before, I wish everybody seasons, greetings, holiday greetings or whatever greetings you have. If you're working that day, have a good day and all that sort of stuff. But from my perspective, of my point of view, Christmas day is just like any other day, just with a bit of tinsel on top. Does it make me feel any happier toward people? Probably not at Christmas. I've turned into a real bar humbug type of dude. Yeah, I do it for the grandchildren. And that's about it, really. Otherwise, I wouldn't bother with Christmas as Christmas lost all its meaning 40, 50 years ago, I think. It just got too commercial. And I think the true meaning of family and togetherness and happiness has been lost. So yeah, it's all more about all who can buy this, who can have that and who can afford this and that. I'm just generally not into all that. So yeah, I don't send Christmas cards, haha. And I don't get any back. Well, I haven't got anybody who sends me stuff anyway, so that really doesn't bother me. I think all my family disowned me when they found out I had MS because they couldn't handle it or me, too many skeletons in the cupboard. Yeah, so it's always easier to blame somebody who is an outsider than themselves or think of others. So yeah, I'm a cookoo in a few nests, but that's not my fault. So well. . Well, that's their loss, isn't it? But then again, families are complicated. I have many brothers, many sisters, many half-brothers, and many half-sisters. Yes, so. I wish them all happy, whatever. And hope that they keep on forgetting me because that would make me a lot happier as they never wanted to understand me anyway. As I am the black sheep, the weird one of the family, the one that has the illness, the one that thinks differently. The one who dresses differently, the one who is kind of out there a bit, I suppose. So to my family, the adopted one wishes all his true brothers and sisters out there the happiest seasons, greetings and holidays and everything. And for all the ones out there who I don't know of, have a good one. Yeah, things can get funny when you're adopted. I thought this blog's about really, it's about what I'm thinking about at the time, not the way the AI used to push me down a certain line. So everything's going to feel higgledy, there's going to be spelling mistakes because as I talk into this microphone and see my words going on to the paper, I can see how it interprets my words. Some of the words will be different, but I don't care because at last I'm free, free to speak my mind. Oh yes, and the worst thing ever to happen to me was with my MS that is was well. Do you want to know? I bet you do, the most worst thing that ever happened and the most embarrassing thing that ever happened. That's always good to know isn't it? Well, when I am doing the spoken word on Spotify, my monthly or bi-weekly podcast, I'm going to be telling all from what it's like to receive catheter training from a really, really, well, yeah, you're just unbelievable stories of 80s and how things used to be and what it's like to receive needles in the spine and stuff like that, the horrors. I'm going to tell it like it is completely unvarnished because that's what you really want, isn't it? Or do you want me to sanitise everything and make everybody feel good? Or do you want to hear it as it is? You know, this is what we really want to know. doing this is so therapeutic. My brain fog is kind of floating in and floating out and I can feel my head pounding in the left and right and my fingers and my feet are like pins and needles. It does feel completely weird and my sort of tongue is being pulled down hard on the left hand side and also my throat is feels like there's something being pulled down in my throat as well. You know what that feels like if you've got MS it's just a nasty horrible feeling but unfortunately the only way of getting around that besides I suppose meditation is going to see somebody and getting help and relief. I use THC, cannabis oil or even medical marijuana or I have been going to the doctor and been getting some lorazepam recently to help and also some benzodiazepine as well strangely. So with these severe attacks I seem to be getting at the moment this autonomic dysfunction stuff when it's all sorted out hopefully I'll be able to get off the big pharma stuff and yeah he's hoping that's going to get sorted out after Christmas but I didn't say which Christmas did I? Well anyway there we go that's it from me this Sunday afternoon and yeah I'm feeling well kind of fed up pissed off and just feeling like I need to be doing something somewhere else. You get that sort of feeling you know where you'd like to go out and you'd like to run a marathon or something but you know you can't even get out your chair because you fall out. So yeah, happy seasons, holidays, whatever greetings to everybody. Have a good one.

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.

So we find ourselves again thinking about having a spoken word blog, no less on Spotify. I tried doing was quite disappointing. But then again, I'm learning. It didn't help that I was suffering with massive cognitive dysfunction and brain fog. And you know what that's like. It creeps up on you and bang before you know where you are. You just can't remember what you're doing. It's the most weirdest of feelings. Well, anyway, it's taken me now a month and a half to two months just to get my Spotify account sorted out. So let's hope that my living hell, multiple sclerosis blog will be going verbal as they say soon.

I've been wondering about what I shall talk about or speak about on the blog. And I thought, well, I'm just going to talk about common sense things and just talk about things that people want to hear. It's not going to be sanitised. It's going to be the real truth told by somebody who has faced the MRI scans, and I've had issues with catheters, stuff like that, stupid things, injections, white coat syndrome. It's all sorts of things that I've been through and people I know have been through, all the gaslighting and everything. I want an open talking blog that I can put out where people can listen and understand that they're not alone and that there are other people out there who can understand the suffering that they are going through themselves and offer help and show that they are not alone in this fight that they are fighting, the fight of their lives, which is multiple sclerosis and chronic illness in general.

The reason that I have been using a lot of AI in my writings is that my spelling and punctuation and sentencing structure is out of this world. Unfortunately, AI changes my words and the very construct I am talking about and it sort of sanitizes everything to the point of why you are not really helping me. So everything is from now on going to be non AI. Yeah, I know. I have just found out AI is holding me back not helping me forwards in my blog and in my thinking and in my writing. AI is a good tool but unfortunately it isn't something that I find that will help me with the words that I want to put on paper as my words are all unapologetic and I don't want it sanitized anymore. I'm fed up with being kept quiet.

Still, three eye-atlas or whatever has gone past and... well, I suppose we're gonna wait for the gas tail to cover us in magic fairy dust. But we weren't invaded by more awning aliens and we didn't see any more moon or weird probes or anything strange. So I guess it's a big nothing burger. Well, that's what I thought it was and I tried to do some experimentation on my body and I've still got multiple sclerosis and I haven't become 5D or anything weird or strange. This is quite unreal. It'd be quite a lot of people who've had their paradigm smashed by people who say things that just really never pan out. Sad really.

It's Friday afternoon and the sun has actually come out for a change and I'm looking out the window and it's still, well, bluish sky and some nice big white puffy clouds. It seems that the storms in the southwest are passing over. Yes, it's been very cold. It has caused me many problems, but there we go. I was thinking about getting the three-wheeled trolley of death out to go to the local voodoo voodoo-woodoo shop, but I thought, nah, what's the point?

No, my luck, it's gonna start raining. Oh, and the battery update, the battery is well. They're not lasting very well. It seems charge them up fully, next day they're down to 75% overnight. Oh dear me, I'll be glad when they do batteries that actually do what they say on the label. That will make a great change. Anyway, that's me gone. My brain fog has hit me so hard and I'm having sort of weird issues with all the other symptoms I'm having to do with this other thing I'm going through and to be fair, I'll be glad when that's all sorted out, but it is taking quite a time as everything usually does because you don't just go in asking about what you think you've got wrong with you, you've got to know what you've got and then you've got to research it and then the doctors you've got to explain to them you've researched it, bloody, bloody, blah and the doctor looked at you as though saying, well you shouldn't be researching it on the internet and then what does he do? Because he looks at it upon Google. Yeah, that's a bit sort of weird, isn't it?

Still I've got to say I've got some very good doctors at the moment and that's what counts isn't it? But there we go, have a good weekend until I can post again and not using AI you're going to find lots of mistakes everywhere. Ha ha, it should be good fun.

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.

Well, it’s another Saturday. Or is it Wednesday? Could be 2017 for all I know – time stopped making sense around the fifth episode of brain fog this morning. The weekend’s here, apparently, and so am I. Unfortunately.

Picture this: I’m sitting here, staring at my endless to-do list, so knackered my spoons have buggered off and left a note saying, “Back in a decade, maybe.” Energy: zero. Motivation: less than zero. The only thing working properly is my ability to screw things up and get it all wrong, which, let’s be honest, I’ve always excelled at.

Sometimes I think the best option is just to switch myself off and power down for a few weeks, like a dodgy PC. Not because I’m dramatic (okay, a bit), but because MS reality is like living in permanent airplane mode – you’re still technically on, but none of the good stuff’s working.

The fog in my head’s so thick, I need a lighthouse to find my cup of tea. My eyes are so light-sensitive, I’m basically a reverse vampire, and my hearing is putting on a pantomime of its own. Tinnitus is mercifully on its lunch break, but the vagus nerve is still auditioning for Cirque du Soleil: pins, needles, left jaw spasms, the works. My hands and feet are staging a static electricity rebellion.

It’s funny how time just morphs from one week to another, and then into another year, another decade. Memory? Gone. Smells trigger more nostalgia than actual memories now, which is probably for the best. Who wants to remember the good old days anyway? They probably weren’t that good, I just had more spoons.

Honestly, I haven’t felt this rough since Thatcher was on the telly and petrol was a quid. For me, Christmas is just more days blending into more days, full of pain, unreality, and brain malfunction. But hey, happy holidays to the rest of you – may your synapses fire as intended and your spoons stay polished.

Sending peace, healing, love, and light to everyone, regardless of your state of mental decay. Don’t hold your breath for a blog post – I’m working on the “spoken blog” tech, but brain fog has other ideas. Maybe by next Christmas I’ll have it sorted. Or maybe I’ll forget I ever started. Who knows? Not me.

Cheers.

If AI could recommend a solution, it would say: “Have you tried turning yourself off and on again?” Sadly, I’m stuck on a loop, but if anyone invents a reboot button for MS, I’ll be first in the queue. Until then, it’s just me, my spoons (missing in action), and the eternal question: “What day is it again?”

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.

Intro The Work and the Shoot

There’s wrestling on the telly, wrestling in your head, and then there’s the clusterfuck called “real life.” I should know 66 years on the mat, progressive MS in my corner, and the cosmic booker never hands me an easy storyline. But here’s the question nobody wants to answer: Is life itself just one big work? Is reality just kayfabe with worse writers and no ring ropes to hold onto?

Wrestling as the Mirror

Wrestling’s the purest metaphor for this simulation we call the world:

Good guys turn heel. Heels turn hero.

Storylines recycle, but the pain’s always real.

The crowd thinks they know what’s happening, but only the wise spot the swerve.

It’s all run by big suits in the back just like life.

Sometimes, the only way to get out of bed is to shoot straight with yourself, even when everything hurts and the ref’s counting slow.

Reality Is the Work

If you’ve survived chronic illness, lost friends, or just watched a week of British news:

The politicians are running the angle. The media’s cutting promos. The “healers” and “preachers” are just the latest gimmick.

We’re all being worked. The trickster’s in the booking committee, and the only thing real is the bruises you carry out of the ring. The rest? Cheap heat and reruns.

Life Is the Real Shoot

Now and then, someone goes off script like Bobby “The Brain” Heenan with a live mic, or Raven cutting a promo that breaks the fourth wall. That’s what I’m doing now. That’s what every soul with a voice has to do: call out the bullshit, refuse to play along when the angle gets too cheap.

MS is the heel manager in my life. The doctors are the refs who never see the low blows. But I get up, every time, even if it’s just to cut another promo from bed. That’s the only way to stay in the match.

The Great Unmasking

What’s left when the lights go out and the fans go home?

The anti-heroes, the tricksters, the weirdos, the kittens at ringside.

The truth that everyone gets worked, but the real legends are the ones who know it and laugh anyway.

Life’s a work. Wrestling’s real. The only kayfabe left is pretending you don’t know the difference.

Warlock Dark’s Final Bell

To everyone out there suffering, fighting, or laughing through the pain welcome to the real main event.

Pick up the mic. Call out the frauds. Suplex your demons. And remember: The only ones who lose are the ones who never get back up.

And if you see Sting in the rafters, give him a nod. He knows the score.

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.

As I sit in a shitty little car park waiting for Albertine to get her tooth attacked by a dentist with a drill fetish, I’m watching the world walk past like nothing’s wrong.

We’ve dragged ourselves over 20 miles of crap roads and potholes that could swallow small cars, just so someone in a white coat can decide whether her tooth lives, dies, or crumbles like the rest of us. She’s in there having a deep root filling. I’m out here having a deep existential crisis. Fair swap.

Through the window, I see people strolling past. All shapes, all sizes, all moving. Feet actually working, legs co-operating, bodies that just… do what they’re told. They probably woke up, stood up, and walked out the door without even noticing what a bloody miracle that is.

And yeah, I’m jealous. Not in a bitter, “I hope you trip” way. More in a “I remember that life and it’s gone now” way.

There was a time when cold wind on my face and cold feet on the pavement were just normal, not fond memories. Now I’m strapped into a wheelchair like a budget Bond villain who never made it to the main script.

The thing about the chair is this: people stop seeing you and start seeing “problem”. They talk round you. They avoid eye contact. They change tone. You don’t exist as a person anymore; you’re a walking (well, rolling) reminder that bodies fail and futures shrink. People don’t like that. It scares them.

For years I thought it was me. My weirdness. My deep dives. My honesty. Then I realised it wasn’t that at all. It was the disability. It was the diagnosis. It was the fact I no longer fit the easy narrative.

Once people hear “multiple sclerosis” or “chronic illness”, you can almost hear the plug being pulled. Some vanish quietly. Some ghost you. Some suddenly “get busy”. You go from “mate” to “emotional admin” in a heartbeat.

Over the past couple of years, I’ve lost a lot of friends. Some to death the real full-stop kind. Others just drifted off the radar because illness made me inconvenient. The funny, deep, eccentric bloke is apparently less fun once he can’t climb stairs or go out at short notice. Who knew?

I don’t have any mates I can just WhatsApp or ring now. The ones who “got” my madness, my weird wiring, my dark humour and deep rabbit holes: dead, gone, or missing in action. It’s a strange kind of grief not just for people, but for versions of yourself that only ever existed with them.

And yes, it’s lonely. Not “no one’s in the room” lonely. It’s the kind of lonely where you start to wonder: is it me? Am I that hard to love? Am I that awkward? Or is the world just allergic to discomfort?

Some days I think back over my medical history the missed things, the gaslighting, the “it’s all in your head”, the “you’re fine really” conversations and I could scream. I’ve changed hospitals now because I got sick of being treated like a difficult file in a broken system.

I ask myself: if I hadn’t moved around so much, would they have found all this sooner? Would I have had less damage? Less suffering?

Honestly? I doubt it. I think some of us are born with the seeds of chronic illness lurking quietly in the background. It sits there, creeping under the surface, like fungus under wet wallpaper. And then one day congratulations your nervous system collapses and your life becomes an ongoing science experiment.

What I miss most isn’t “being healthy”. It’s the simple things:

Going to the toilet without planning it like a military operation.

Walking up and down stairs without feeling like you’ve been tased.

Just sleeping. Properly.

Running.

Feeling your own body and trusting it not to betray you in front of everyone.

I look back at all the accidents, the falls, the weird episodes all the stuff that made no sense for decades and now it does. And the anger is… real. Because so much of my suffering didn’t need to happen. It could have been caught earlier. It could have been managed better. It could have been believed.

Should I have shouted louder? Fought harder? Been more aggressive? Was this my fault for not being a bigger bastard sooner? I genuinely don’t know.

So yeah, let me ask you this, if you’re reading:

Do you feel isolated and alone because of your illness? Have people quietly vanished from your life once it got “too real”? Do you feel like your diagnosis made you socially radioactive?

Because that’s what it feels like here. We’re all human. We all hurt. We all bleed. But some of us are expected to do it quietly, out of the way, so we don’t upset the healthy.

Is it a test? A lesson? Karma? Cosmic admin error? What exactly are we supposed to be learning from this?

As I’m sat here, the sun’s trying to shine like it’s in denial. My body feels wrong: neck in a constant state of “what fresh hell is this”, head buzzing like badly wired electrics, eyes not quite synced to reality. And yet, I still want to do things. I still want to live, create, move, speak.

And that’s the sick joke: the mind still wants to run marathons while the body struggles to survive a trip to the toilet.

I’ve lost good friends over the years — the ones who truly understood me. Now, I have Albertine, my kids, my grandkids. Everyone else has basically evaporated. My brothers, my sisters, extended family… gone.

Does it mean I’m a bad person? I don’t think so. Does it mean I’m simple, or awkward, or too much? Maybe to them.

I know I’m strange. Dynamic. Eccentric. I think differently. I question things. I look into the abyss and then start mapping it. That’s just how I’m wired.

People call me “Marmite”. Fair enough. Some love me. Some can’t stand me. I tell the truth. I don’t do small talk. I don’t do sugarcoating. That tends to thin the crowd pretty quickly.

When I had my “glitch” that moment where things really went sideways all I saw was darkness. No light at the end of the tunnel. No spiritual fireworks. Just… nothingness. The void is not romantic. It’s just empty.

And here’s the real kicker: looking into the void doesn’t help much if you’ve got no one to talk about it with.

Artificial intelligence can chat. It can reflect language back and be useful in its own way. But AI doesn’t know what it feels like to lie awake at 3am wondering if your heart’s going to stop. It doesn’t know what it’s like to realise your nervous system has been malfunctioning since childhood and everyone missed it. It doesn’t know what it’s like to be trapped in a body that keeps glitching while the world expects you to carry on as normal.

That’s why I’m going to start a podcast.

Not because I think I’m some guru, but because I’m sick to death of people like us being invisible.

I’m getting a microphone. I’ll set up the account. I’ll get it on Spotify. And I’m going to talk voice, not just text. I want to interview others with chronic illness and disability. I want to hear different stories, perspectives, battles. I want people to know what we live through every day.

We need more voices saying:

This is hard. This is unfair. This is exhausting. But we’re still here.

Sometimes, a kind word is the difference between someone hanging on and someone giving up. A hug can do more for the soul than any prescription.

When I’m at my worst when I feel like I might actually be leaving this planet soon I curl up with my wife. That’s my heaven. Not golden gates. Not angels. Just me and her, breathing together. In that moment, no matter how bad I feel, I am at peace.

In two weeks, I retire. Not because I’m ready. Because my body has decided to hand in its notice. I can’t even really afford the basics, like the electric bill, but here we are. Everything’s gone up except support for the people who need it.

So if you’re out there, struggling, broke, exhausted, in pain, staring at a ceiling wondering what the point is:

I see you.

If anything I’ve said here resonates, drop me a line. I’m short of friends but not short of words.

Sending peace, healing, love and light — No matter who or what you are. Human, alien, ultra-terrestrial, glitch in the matrix, or just another broken soul in a waiting room.

So saith Warlock Dark

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.

There are days with MS… and then there are those days the days where your entire nervous system decides to re-enact a flea circus on a hot tin roof.

So let me paint the scene for you:

I Am a Kitten. A Flea-Infested Kitten.

Not a majestic panther. Not a sleek predator. No. A tiny, confused goblin-cat with an arse like a bonfire and fleas having a rave on my spine.

I’m sprinting around the imaginary room crashing into furniture, tripping over nothing, having a full cosmic meltdown because the fleas/MS won’t stop chewing on every nerve ending like they’ve paid for an all-you-can-eat buffet.

Lights flickering. Shadows being weird. Brain fog thick enough to butter toast with. Hallucinations just to keep things spicy.

Everything MS can throw at me it throws all at once.

And there I am, this poor invisible kitten of doom, doing laps like I’m possessed by 15 demons and a Red Bull sponsorship. Things fall off shelves. Air becomes lava. Reality breaks down like a cheap knock-off mirror in a funfair.

MS as Fleas

Imagine your entire body itching in places that don’t exist. Imagine the fleas having meetings about unionising. Imagine scratching your own soul because everything feels wrong.

That’s MS. Tiny bastard parasites gnawing at the wires of your meat suit.

The Choice

So here’s the question:

Would I rather be a flea-infested kitten with an itchy bum? or Would I rather be a 66-year-old strapped to a power chair with MS chewing on my circuits?

Answer?

I’ll take the MS and the grumpy realism, thanks. At least I don’t have to lick my own arse to feel clean.

Fleas? No chance. I’ve been bitten enough by life as it is.

Besides a kitten with fleas is chaos. A man with MS in a power chair? That’s controlled chaos. A battle-hardened wizard rolling through hell’s hallway giving death stares to anyone who gets in the way.

Moral of the Story

MS is the fleas. You’re the kitten. Some days you sprint. Some days you hide. Some days you crash into the coffee table and take the lamp with you.

But you’re still here. Scratching. Surviving. Snarling. And somehow laughing at it all.

Because the alternative? Nah.

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