personal stories

⚠️ 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, good afternoon, good evening, good morning, wherever you are. Hello,fellow Humanoids , I trust that you as well as can be expected on this rather cold and very chilly start to the week. I sit here in my chair talking into this dictate to speech program and trying not to laugh as it really is very strange on punctuation etc. Still over the weekend I managed to really cause myself a really big bad severe brain fog. Oh my god I over did it and then some. But I managed to get a lot done. That's the most important thing in this case actually.

I managed finally to get most of the things sorted out for my podcast. and also I am going to be talking not just about multiple sclerosis but chronic illness and also the effects as well on mental health. And also we'll be talking about things to do with the paranormal and other realms and things that seem to just sort of creep in. I really don't know why, but it's generally about multiple sclerosis I think, and things that go bump in the night maybe. Yes, so I have got a lot of my own produced music which well, I got onto the AI and I put in what I wanted and well, I have music. So I have well over an excess now of a 100 tunes. And there we go. Plus I have guests. And I will be doing these podcasts and putting them up on Spotify. So yes, we're looking forward to this indeed. So to my mind was worth the suffering actually getting stuff done...

So my weekend was also slightly fraught as well as the good colonel came to visit... he does not like my tin foil hat and my views lol.. I thought he was going to explode... I was seriously pissed off and my attitude did not get any better when he started pretending to listen to me and ignore me.. I thought fuck this and went slightly well pissed off 6 ft 4 dude in a power chair mad... he soon went off into the outside for a vape lol... so it was I had to calm down as I basically slightly lost it...but there we go.. when we are not world wise and blinkered and you pat me on the head and treat me like an idiot that's what you get .... So I will always laff inside and wonder seems he treats me like a fucking idiot lol I cannot get over it the way he is lol

It's a very crazy thing is, before I was diagnosed with MS, he used to treat me like a normal person, a bit of a role model. But yes, things do change, don't they? Over the years, people seem to think just because you're in a wheelchair, I am disabled, that I am a fucking idiot and I'm sick of it. And yes, I'm speaking out. So if people start saying shit to me, I'm giving it back because I'm bloody well fed up with being treated like an idiot. fed up with being patted on the head like a good boy. No, I am totally fed up with it, and I would imagine there are quite a lot of other people just like me who are as well, all this being talked down to. You know, they must think we are stupid, I have quite a good education lol, left school at 15.., and I went to university at the age of 40 and I've got a few bits of paper as well, and I was self-employed in computers. Yeah, the MS screwed my career up there enough, but guess what? Carried on till my final day of retirement, even though I was struggling every day. Oh yes, chronic illness really does fuck your life up completely, but sometimes good things can come out of it , and it did for me in certain respects. But others, it doesn't. But that's the way the dice roll in life, I'm afraid.

Oh yes, I'm genuinely excited and looking forward to the podcast and yes it will be soon hopefully. I've got the music, I've got the guests and I've just got to get the rest of my resources and everything together and then it's the red light and off we go. I've got some jingles to make and stuff like that and hey ho you never know it might be enjoyed by one or two people but there we go it's going to be a non-live podcast basically. I was thinking about a live podcast but I decided against the idea as getting numbers for a live podcast would be quite a hard thing to do, you have to be very well established indeed to do anything live in these days. thanks to everybody who is and has been helping me over the past year get to where I am at the moment. So a big shout out to Albertine and all of my family and my extended family. for the encouragement and helping me on my path.

So as I sit here on Tuesday morning looking at what is on the paper in front of me, I'm smiling slightly. knowing that in a few weeks everything will go live and my first episode on the podcast will be on Spotify and I'm sure that I will find other places to play my podcast as well as there is also Sound Cloud and other places. So let's hope we can get some really good attractions and the biggest when we actually do the podcast and hopefully it will be a every two weekly podcast and maybe it might end up being a weekly one depending on how it goes and how I am because as you know stress is something with MS that isn't pleasant. So yeah I've got plenty of jingles and stuff when I hit those bad walls of brain fog How I'm going to need those.

So when I actually start the podcasts, if anybody out there wants to be a guest, all they have to do is just drop me an email and we will make it happen as long as it's to do with what we are actually talking about which will be illness and also things to do with the paranormal. I know people might think that is like strange, but I do believe there is a crossover. I believe people with chronic illness can have extra senses and can perceive more than others. And also people who are disabled, have many great psychic abilities, I have often found many don't want to talk about them because they think that by telling me or telling others of their weird experiences it will make them look stupid and silly. But let me reassure you by talking about it, it really does help and seriously it has helped me. So yes, because we are all the same and unfortunately when you're disabled and like me my illness causes my brain to be slightly fried and it causes me to be completely different to most people.

The most painful thing is, multiple sclerosis has changed me beyond anything that I used to be. People would not recognize me, they would not even really know me. Yes, that's how much I've changed. It's completely changed me, my life and everything about me. In some respects, that is a very good thing. It pushed me and pushed me. Because of the multiple sclerosis, I went to university. Because of the multiple sclerosis, I started up my own computer business. Because of the ms I pushed myself to the very limits of my existence. So yes, I have been through the ringer, as they say, and it has been pleasant in parts and other parts, it has been a living hell.

I tell it like it is. I speak straight. I do not hold back. People find that a bit of putting when you tell the truth and you tell people straight, no mucking around. that whole university thing started when I was 40 and I'm now what 67 So yeah, things really did change for me. I was diagnosed with MS but unfortunately the diagnosis took quite a long time as in some of my other previous blog posts explained what has happened. of course my first major MS attack was in 1986 but there we go that was 1986 and nothing was really done about that they just put it down to nothing in particular. I think that they wanted me to be a walking wreck who couldn't do bugger all because there we go. In 2003 I had a lumber puncture and I had an MRI and they said we are terribly sorry but you have MS. What I found really silly was I had all the symptoms of MS way back in the early 1970s. So there we go. It took them from 1970 odd to the year 2000 to diagnose me with MS.Slowly getting progressively worse.

Yes, I have memories of when I was 14, 15, 16, and I would get severe pins and needles, my body parts would go numb for days on end. I was suffering with severe neuralgia, weird nerve pains all over my body. So there was the memory as well. Even back then, I could do something one day, then a few months later, going to do it again, I just couldn't do it because I couldn't remember. And then trying to remember, it really hurt my head, trying to remember. also had the MS belt or the tightness around my chest which was awful. It was the most terrible thing and nobody would tell me what the problem was. So yeah, I really am annoyed at my treatment back in the 70s and 80s. It really was terrible. They just, well, didn't get it...

So the dictation program totally crashed my machine and I lost everything new on the txt pad duh . Oh the joys. Still I'm going to end it here. It was quite a mega post actually and hopefully well I'm not going to remember what I put because I've completely forgotten. You know what it's like.

wishing everybody peace healing, love and light, no matter who, what or where you are. Even if you are wearing your tin foil hat in a flying saucer, flying around the flat earth below the firmament dome lol. Hello, hello.

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

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

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

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

Well, it's the weekend, a very good weekend to everyone, fellow humanoids and that you are all feeling as well as you can be. Yes, the weather seems to be still quite warm here in the southwest and as it's not quite the heatwave, it is pleasantly warm outside. I was going to chance a trip on the three-wheel trolley of death, but I thought no I better not because it's going to be Saturday and it's going to be really busy on the roads. And I can't be asked to go riding around on my speedy 8 mile an hour. Power chair of death or whatever you'd like to call it pissing people off. I just keep that for in the week lol.. But to be fair, the motorists around here are all fantastic. I have not had a problem, and they are all very courteous.

Yes, I have overdone it this past week and I am now starting to pay for it. I can feel that brain fog starting to roll in. You know, like the tide just slowly coming in. Just bathing over you then, bang, that's it. I really should know better, but the problem is trying to stop pushing myself to do things. That's a major issue with me, I'm afraid, and I suppose I really should go with it, but yeah, I suppose the way I was brought up was different. Well kinda carried on with stuff even if we were... Well, yeah. That's the problem. Getting out of that old paradigm, I suppose.

I suppose I have pushed myself to the very extreme, the very limits of my health boundaries. And to be honest with you, it was not worth it. Trust me, you can push yourself far and then you can push yourself that little bit further. And my God, you will pay for it. I know I have over the years. So, when they say, "Work sets you free," well, for some people, yes, work does set you free, but unfortunately for some of us, work cannot ever set us free. More is the pity, to be honest with you. I suppose the point I'm trying to make is never overdo it. Always know your limits and know your limitations as that's when all the accidents start to happen.

Yes, I know I've been there. I have had many accidents due to my stupidity at believing I could still do what I used to be able to do. When I didn't have this MS affliction, or was as bad, I've managed to break every toe on my feet and big toe toes. I've managed to break both my shoulders. I've managed to brake various bones over my body falling into things and whatnot. I have managed to rip muscles off bones. I've badly sprained, pulled muscles. My God, I have hurt myself so badly. I even ripped all the muscles off my left hand side. I was trying to lift something too heavy. I learnt my lesson, trust me, many years ago. All because of my own stupidity. All because I thought nah I don't need a stick. Nah I don't need a wheelchair. Nah I'll be okay. Yeah ha ha. Famous last words I can tell you that.

Because I was in the old mindset, not my new mindset that I have had for the past year or so. Yes, people, I changed my total mindset. My old mindset was destroying me and my life. So, yeah, a total change of mindset at 66 and retired. Well, it may have taken that many years, but it was certainly well worth it. If you can't handle the fire, don't jump in the hot frying pan as they say. Or as my dad would say, "That'll come right. It'll be about right," he say.

So last year was a real eye-opener for me, losing my dad and my mum. That was quite a mindfuck. That's for sure. But there we go. And yes all the family that said oh we'll keep in touch with you and all these words of niceness how long do you think it lasted well. Maybe five or ten minutes that was it and then it was all let's put him in the cuboard and leave him there. Poor boy pat him on the head that sort of behavior from family who should really know better.

But to be honest, I'm not really bothered by their behaviour as it's not their fault. It's just the fault of society in general, at the way disabled people are treated. I have found in my life that being disabled, I have been and am still being treated like a second class citizen, or someone who does not exist or someone who does not deserve to exist. But I can shout very loudly and I shout "fuck you, I'm here and what you're going to do about it." And then they usually back off and don't speak to me for over ten years, which is fine with me. lol

So, yeah, people seem to think that being disabled is an easy life, but I can assure you being disabled is not an easy life at all. Having progressive multiple sclerosis and all the extra issues that I have to go through daily 24/7. I can assure you most people couldn't handle a week or even an hour in my shoes. So, yeah, you know, people who want to judge me, people who want to not understand what I am going through, my issues, how I feel. Yeah, people don't think about that, do they? No. People don't think about the other person's feelings. They just go and they just fuck themselves with their stupid, outdated views and moral compass.

But the great thing is, having my own blog, I can have my voice heard by others, who also have some of the same issues that I go through. The killness isn't just multiple sclerosis, it is a kaleidoscope of other illnesses. I will get the AI to put in some of input here, I think, about that.

Here’s a concise list of chronic illnesses that often co-occur with or are similar in impact to multiple sclerosis (MS). Use these to illustrate the “kaleidoscope” of conditions you can face:

Neurological autoimmune conditions: neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, chronic inflammatory demyelinating polyneuropathy (CIDP), myasthenia gravis

Autoimmune diseases: lupus (SLE), rheumatoid arthritis, Sjögren’s syndrome, Hashimoto’s thyroiditis, Graves’ disease

Chronic pain & fatigue syndromes: fibromyalgia, chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

Small-fiber & autonomic neuropathies: peripheral neuropathy, small-fiber neuropathy, postural orthostatic tachycardia syndrome (POTS)

Gastrointestinal chronic conditions: Crohn’s disease, ulcerative colitis, celiac disease, irritable bowel syndrome (IBS)

Endocrine/metabolic disorders: type 1 diabetes, adrenal insufficiency Respiratory chronic diseases: asthma, chronic obstructive pulmonary disease (COPD)

Cardiovascular chronic conditions: hypertension, chronic heart failure Kidney & urinary: chronic kidney disease, interstitial cystitis

Skin & connective tissue: psoriasis, eczema, systemic sclerosis (scleroderma), Ehlers–Danlos syndrome (hypermobile type)

Mental health & neuropsychiatric: major depressive disorder, generalized anxiety disorder, bipolar disorder

Neurodegenerative disorders: Parkinson’s disease, early-onset dementia Blood & immune: chronic Lyme disease (post-treatment Lyme symptoms), chronic infections (e.g., HIV with long-term effects)

Others commonly overlapping: migraine (chronic), sleep disorders (insomnia, sleep apnea), chemical sensitivities/mast cell activation syndrome (MCAS)

thanks Ai for that.....

But when you do look at that list, it is to say the least absolutely stunning mind blowing. I have a few of those issues on the list...

Still, let's hope that you made some sense of all of this. I don't know if I did or not. Still wishing everybody healing, love, light and peace. And yes, no matter who or whatever you are. No matter wherever 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.

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