Multiple sclerosis is My Living Hell

cognitive dysfunction

All posts tagged cognitive dysfunction by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ 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 content

    Hello fellow humanoids and I trust everyone out there is feeling slightly better than I am yes it's been another one of those weeks a lot has happened let's hope that you can understand what I'm writing haha as you know when I do these usually I end up having my cognitive dysfunction you know what that's like when you're staring at a piece of paper and you've lost all the words and you've lost all your train of thought and the head hurts haha

    The autonomic dysfunction has started to calm down somewhat, i have modified my diet again to get rid of more histamines it's amazing that even food that doesn't have histamines that causes a reaction in the body that causes the body to make some sort of weird histamine thing below you will find the explanation from the AI as I find it very hard to find the proper words to describe all of it otherwise we would be in a fine pickle trying to understand what I've put down

    Understanding Autonomic Dysfunction and Histamine Intolerance What is Autonomic Dysfunction?

    Autonomic dysfunction refers to an imbalance in the autonomic nervous system (ANS), which regulates involuntary bodily functions such as heart rate, blood pressure, digestion, and respiratory rate. This can lead to symptoms like fainting, dizziness, fatigue, and more.

    The Role of Histamines

    Histamines are chemicals in the body involved in immune responses, regulating physiological functions, and neurotransmission. They can trigger allergic reactions and affect various bodily systems.

    Histamine Intolerance Explained

    Histamine intolerance occurs when there is an excess of histamine in the body or an inability to break down histamine properly. This can lead to a range of symptoms, including headaches, digestive issues, skin rashes, and respiratory problems.

    Elimination of High-Histamine Foods: Certain foods are naturally high in histamines, such as aged cheeses, fermented products, and processed meats. Removing these can help lessen symptoms.

    Low-Histamine Alternatives: Include fresh meats, certain fish, eggs, fresh vegetables, and gluten-free grains.

    The Impact of Histamine-Releasing Foods: Some foods, even if they are low in histamines, can trigger the body to release its own histamines. Common culprits include tomatoes, strawberries, and chocolate.

    The Benefits of Dietary Changes

    Symptom Relief: Over time, reducing histamine intake can contribute to a noticeable decrease in symptoms associated with autonomic dysfunction. Increased Awareness: Modifying your diet allows you to become more aware of how your body reacts to different foods, fostering a more personalized approach to your health.

    Conclusion

    Your journey toward managing autonomic dysfunction through dietary changes is commendable. By focusing on low-histamine foods and being mindful of histamine triggers, you're taking proactive steps toward better health. Keep experimenting and paying attention to how your body reacts—this awareness is key to finding what works best for you. thank you AI

    So my diet and change your food regimen has really started paying dividends again I have to be very careful and check everything I eat as my body is that sensitive even to the smells can start me off it is quite unbelievable it's taken me a very long time to get the drs to understand what I'm going through

    So now I'm just waiting for an appointment with the neurologist so we'll see how that goes But on a more positive side i have been doing more and more, and I bit the bullet this week and I completely reformatted my machine that's my PC and now running Linux mint

    It's taken me about four years to be truthful to fully install Linux as I was using it on a pen drive and testing it out for a while you know how that goes you can make all the mistakes and not make the system go stupid well it's in stalled on the PC now and it's amazing all the programs that are free with Linux in fact I would go as far as to say some of the programs are so much superior to those of Windows even though my brain fog is quite severe I'm able to Battle through and haven't screwed anything up yet which is amazing so yeah Linux is far more easier for me than Windows as Windows 11 is all AI and stupid haha personally I'm the Window 7 man but there we go

    I have also been doing a lot of research to some of the things that I have been seeing I now have orbs on film that will have been seen regularly in our living room they are white balls of light in varying sizes floating around the room it's quite unbelievable and it's not just me that sees this so I know it's not an optical illusion or to do with my MS

    So that now beggars the question these blue orbs that I see and white small orbs that I see around that are like little stars up to the size of a Sixpence they are still around and I see those a lot and I just wondered if all these orbs are connected if it's to do with some sort of spiritual thing or it's some sort of weirdness that comes from another dimension who knows lol

    Because when I have asked people about what is going on with me they seem to want to placate me and Pat me on the head and say they're there it's all in your head and your imagining everything so yeah I'm going to start showing the film to the doctors and saying what is this then can you work out what I'm going through and how can I can see it there how come albertine can also see it and see them floating around so yeah whose mad then me I don't think so lol

    also there was these weird other things that I've been seeing they have been called time slips or bleed overs or whatever and I did some research on this and guess what the same things have been seen that I seen in those areas in fact it seems to vindicate what I have seen so yes that is another thing that means what I saw on those occasions have been seen by other people over the past 60 plus years unbelievable but there we go and I am still doing more research But I may be lucky.

    Sending everybody peace, healing, love and light to whomever and whatever you are out there.

    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
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  • Posted on

    ⚠️ 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 disfuction this may be a confusing read non ai content

    hello fellow humanoids Well after months and months of waiting I'm going to test my wheelchair out today yes a three hour round trip but it will be well worth it rusty one has to go in the garage on Wednesday for a new starter motor and a lot of welding to be done for the MOT this year it never ends pay pay lol it doesn't matter that you're on a pension and can't afford much haha but such as life I suppose the whole past load of days has been an absolute nightmare my autonomic dysfunction got set off on Friday and I have had the weekend from hell

    It's dark outside and it's raining and it's very cold indeed my body is giving me hell I am trying to stretch my legs and arms to try and get them working properly just think no more hassles I'm going to have an actual proper power chair without any hassles of the three wheel trolley of death or the other trolley that went dead battery lol

    The most important thing is I will be able to get new things done that I have not been able to i'll be able to go out be able to go and see stuff for a change instead of being stuck in the van it's been a long time since I've been anywhere must be two years now it seems that I've I still have to self-isolated myself even though I'm now retired what with all the colds and flu and all the lurgies and Bugs going around lol but to be fair I Self isolate every winter as I don't see any point in making myself worse than I already am

    The autonomic dysfunction came into full Force over the weekend because I dared eat some ground sunflower seeds and of course that set off the histamine reaction and it was bad it really is quite nasty to be fair here's just a few of the things that happen when you go through this autonomic dysfunction stuff So yeah, it's been quite a mad few days. Indeed, the autonomic dysfunction is getting less, but I'm hoping today for very good news indeed.

    I am slightly feeling weird and very weirded out as the doctor will be ringing me with the results of my ECG, the week long test that I had before Christmas. Yes, and I'm hoping that things work out on the phone as I have my views on Whats up with me, and I just hope that they can understand what I'm going through as I am going through something that no human should ever have to go through. It's the most horrible thing I've ever been through.

    So today Rusty1 went to the garage, yes Rusty1 is having the starter motor fixed and the rest of the rust taken care of. So we'll be hearing later on today how that went. Yes indeed, I'm thinking very very big bill. When is it ever a small bill when a vehicle is concerned? That's what I have to ask myself. But then again it is essential to my well being as if we didn't have Rusty1 I wouldn't be going anywhere would I? Yes I would not as I am a virtual prisoner in my own home until I get my proper power chair.

    Speaking of the power chair, yes on Monday, I did the three hour trip and I have tested the power chairs that they had there and I'm getting apparently a quick 300 and hopefully I should have that within a month or so. So that was really well worth the trip but I must say as soon as I got back I was so knackered it was unbelievable. I had to go straight to bed. The old brain fog was quite remarkably bad along with tinnitus and the pain in my eye it's like a hot needle going through my right eye is no fun. Still I'm glad I didn't have to drive. Thank you Albertine for that.

    So I'm sat here now waiting for the doctor to phone. Yes, I've got white coat syndrome and I'm not looking forward to the phone call and my nerves are jangling like there is no tomorrow because well, I have that Feeling of Doom as usual, especially when it comes to the doctor. Yes, so this is a bit sort of all over the place, this one, and yeah, I hope that you don't have issues reading my stuff because it's all over the place because I never know where I am. That's why I used to stick it through the AI, but it used to sanitise it too much and I used to end up arguing with the AI and that's never good for my stress levels...

    I am still seeing weird stuff as well and I have been trying to get professional help and I'm getting nowhere fast. These things I keep seeing. Yes, I have spoken to doctors, neurologists and all sorts of different people and I think I'm an eccentric nut. They seem to sort of say, 'Yes, yes, sort of pat me on the head' and I copted a look at one of my notes and it said, 'As long as it keeps him fucking happy.' 'I should bloody cocco, why would somebody say that?' A professional. 'They don't know me, they don't know who I am, they don't know what I am, yet I'm always fucking judged.' I hate being judged by people who don't know me, it's one of the biggest things. Because I'm in a power chair, I dress different, I look different, my attitude's different, I am a person inside, you know. These sort of people seem to forget some people do. And to me, I find that highly offensive.

    now am I a pensioner, but I'm an eccentric pensioner with progressive multiple sclerosis, and severe Autonomic dysfunction, and yeah, I'm different. And I get treated like a moron. Oh, I know, let's talk to the chair. That's the wooden chair next to me, because we might get more sense out of it. Really? Honestly. It really does piss me off when people talk down to me. Or people think that I am stupid because I am in a wheelchair or because I am disabled. Do you know what? It really angers me when people ignore me and then speak straight to Albertine about me without asking me. I am sick of it. But when you say something you are then accused of being an angry or weird person. You just cannot win. It really is a minefield out there. So in the future I am just going to refuse to say anything and I am just going to Stick to the basic facts. Nothing else. That's it.

    sending peace healing love and lite to everyone

    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
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  • Posted on

    ⚠️ 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.

    Hello fellow humanoids

    So it looks like it's going to be maybe a weekly blog now. Yes, things are not going too well at the moment for me and my MS. Still, at least I will try and do some more. Things are looking a little better, but unfortunately this brain fog just will not let me go. No matter what I do. It seems to be hitting me with an a vengeance I haven't had in a long time.

    The only good news is in three weeks time I get a phone call from my doctor about the results on my week under the heart monitor. Still three weeks time. To me that's okay really because if it was anything to worry about that a God in touch as the test was done over two months ago now. I've got the physio guy coming over again as well. Yes, he's going to give me some exercises to help me, apparently with my issues. Very nice chap, had some very interesting conversations with him, a very switched on person. And certainly did his job well and knew what he was doing.

    So now they've referred me again to the language and speech people. This should be interesting as it's a different hospital in a different county. So we will see what happens. I know where I lived last time. I had a lot of help and the guy who did the therapy was very good indeed.

    Well, the kittens are about four months old, so no longer little innocent kittens, are they? I have never seen so much anarchy in my life as those two kittens. They run absolute riot everywhere. They say, "Yeah, you get it, they're fussy about their food." Yes, unfortunately, we've tried many kitten foods, but alas, they seem to turn their nose up at them. And we've even tried the expensive ones as well, and they turned their noses up at those. So, I don't know. I'm looking forward to when they're six months old and I can feed them adult cat food. Or even other types of food.

    Still, there we go. It's interesting finding cats perched on tops of doors, perched on tops of furniture you'd never thought they'd get the top of. It really is funny, and to see them climbing around as I zoom over trying to pick the kitten up after shelf without knocking everything, it is like unbelievable. It's a complete mindfuck I can tell you. When you're as banged up as I am, trying to get a kitten off something is just like trying to get hold of an electric eel covered in grease. It is neon impossible.

    So, missi and Tiggy run rings around meand my powerchair. And to be fair, they are funny as a funny thing on funny. Yeah, they sort of take my mind off a lot of what I'm going through. In fact, they take my mind off quite a lot of what I'm going through. In fact, I would say these cats are bigger medicine than medicine, to be honest with you. They seem to have this effect of balance in me out, making me laugh, making me smile and just generally making my life a lot happier. So yeah, I still have the pain, I still have the confusion. I still can't walk. Yeah, I'm still stuck in a chair. But hey, at least I'm laughing again. That's more than can be said for earlier on last year when I thought that was it for me, dead man walking.

    So yeah, for me it was the most positive thing I have done in a very, very long time. It was just a point of finding out what animal would be best for me, either a dog or a cat. In the end it turned out to be two cats or kittens and they have helped me immensely. I must say they really have helped me. Cats just seem to have this other sense, this other worldliness about them.

    When I wake up in the morning, who greets me first thing by licking my nose and biting it but tiggy, saying hello and then Missy will come up and she will sniff my nose and rub her nose and my nose and go off and they both say hello to me. They both say hello to me when I roll past and mew and say hello, hello and I'll stop and I'll say hello and we'll all make a fuss and then we'll look at my poor hands and it's a good job I can't feel much because my hands are ripped to shreds. They matter blood everywhere because those cats can really really really really play like there's no tomorrow but hey ho every scratch as a memory as they say but when you get scratched it doesn't hurt until maybe a day later you wash your hands or something. That's the problem with MS you just can't feel much but there we go. That's life I suppose.

    So it's taking me all weekend just to write this. It's Monday morning and I've had no sleep at all on Sunday night. And I feel like absolute hell today. I've got raging pins and needles in my hands and in my throat and yes I'm getting that sharp like stabbing pin in my right eye. Yes how exciting and the tinnitus is really loud this morning as well. So, there go my plans for today and going out and everything that I wanted to do. Yes, the AA man won't be here until I phone up or Albertine phones up. So we can actually take the van out and charge the battery up when it started, but I am feeling so ill it's... I can't be asked to even do this some days. Still, it could be worse. I could be sat in front of the fridge with the door open, getting warm.

    But there is an upside, a very positive side. Since I have had my diagnosis of multiple sclerosis, I have done so much with my life. It is unbelievable. Some things I thought I would never accomplish and that I would never do. And that will be my next blog post. MS isn't the end of your life. It's a new beginning. It will take you down paths you never knew existed. It will be a truthful mind-bending no-holds-barred blog post. And I look forward to doing it.

    Sending everybody peace, healing, love and light no matter who or whom 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
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  • Posted on

    ⚠️ 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 had the storm. Oh my god, the rain came down like a torrent that you would not believe. It was like Revelation and Armageddon the way that rain came and the way the wind just blew and blew. I could just hear everything clanging and just smashing around outside. I just hope when I go outside later in the power chair that it's nothing too expensive. But such is life when you are living in the Windy south West. A lot of trains have been cancelled and a lot of buses as well. But that's normal around here. And there's power cuts everywhere. That's also normal around here. But they don't last that long, thankfully.

    So I also had the local physio around yesterday and he assessed me so that assessment should be interesting, very nice chap indeed, all sorted. Just waiting now for the other people to get in touch with me, hospitals and doctors, etc. I shall give it another couple of days and then I suppose I'm going to have to make some phone calls and see where we are. Or I suppose emails be better. There's nothing like having me on the other end of the phone when I'm in one of my cognitive funks. And I can't think of words. There's nothing more annoying than that I get really annoyed. as when you're trying to find simple words like, I don't, I can't give an example really, but just simple words or sentences or you change what you were talking about midway through and people can't follow what you're talking about sometimes and you find cognitively that you are all over the place. That's what I'm like these days and I have been for quite a long time and I think a lot of people don't realise just how common this is with multiple sclerosis and severe cognitive disorders in general.

    So, I have found a bowel hack for MS. Basically, I found that I have been having made for me a flat bread made with all natural ingredients. Natural strong brown flour, you know, a little bit of olive oil, a bit of salt, a bit of yeast, blah blah blah mixed together. And then put on a griddle, blah blah blah with a load of ground linseed in. Now, the hack is linseed makes all you're pooping easier. There is no need for me to take laxatives or to have any gut wrenching medications to make me go. I had so many bowel issues they nearly gave me a colostomy bag, and I said no. And I'm glad I said no to the colostomy bag because I sorted my own issue out.

    When you realize with MS, the nerves in the body cause your bowels to get totally fucked up, which causes issues with urination and also with pooing. I have spent most of my life with bowel issues due to MS and that auto whatever it is I've got wrong with me and I can tell you I have never had a period of time where my pooing has been so good and with this complete change of my daily food intake diet making sure there are no histamines in the food I am at last not having bad stomachs acid and I've managed to get my gut health back to some sort of personal semblance so for me personally changes have been long but I now know what I can and cannot eat so I am like a forensic scientist going through a piece of food looking at it seeing what's in it the whole nine yards so yeah diet is so important with chronic illness I did not realize food causes so many issues when you look into it it's an absolute minefield but if I'd have sorted my diet out 20 or 30 or even 40 years ago I don't think I would be as bad as I am now truthfully It's not just looking at labels either. What I've been doing is I've been putting the label through the AI and it's been giving me the total truth on the ingredients and what they do to my autonomic dysfunction in my MS and the causes and how it makes things worse. So yeah, I've gone down to a forensic level on my food diet and I've also done that with my medications as well that I take.

    I take nothing that will give me any side effects as unfortunately if there's a side effect on the packet, I get it. You know, my body is hypersensitive due to my condition. But there we go, who would have thought that MS could have caused my heart conditions that I have? You wouldn't. But when your vagus nerve and your automatic or ortomunic dysfunction is going berserk due to histamines, you know, it causes heart issues. I didn't know that, but people, please, please remember this is my own personal journey and remember if you have any symptoms or any weirdness, see your physician or your neuro people or your MS nurse or whomever you speak to. Seek professional help always. Remember that.

    And remember MS is a very, very, very scary journey. Anybody who says is not, is a liar. MS has been very scary for me. It's a massive headfuck. It really does fuck with your head and your cognitive issues, you know, the pain, everything. It really does send your head into some very, very strange places. And even I admit here now that it has caused me mental issues and I have even had to seek help due to this. So if you are suffering in any way, you really do seek help. It is something that a lot of people don't talk about. But yes, I have had mental health issues over the last past eight years and I say to people, get help because help is something that will get you out of a place that you have got no need to be in. MS is a cruel mistress, as I say, but don't let it beat you. Always fight it. Treat MS as something that is just plain horrible and just fight it tooth and nail for everything that you are worth. Give it a run for its money like I do.

    I try not to let it beat me. Even when you are at your worst, even when you are at your lowest point, even when the pain is so bad that you want to give up, even though everything is crushing you, stick your middle finger up to the MS and say, "Stuff you bastard, you're not going to beat me." Be positive, fight the illness, I know I have for the past 40 odd years, and yeah, it's been hard, it's been harsh, but I tell you what, I wouldn't change my life for anything now, because life is to be lived and it is to learn, and what I have, I accepted a long time ago, and I know my future isn't bright or brilliant, but I've accepted what and who I am.

    Yes, I may be marmite man and have no friends, I may say what I think, and I may have a tinfoil hat on, and I may say strange things, and I may see things, but I'm just being me. Hey, let's all just be ourselves .... because we have all had to change our lives and we have all had to adapt in many ways because of our illnesses and the adaption is hard. Yes it is, but we eventually do get there, we eventually do change the way we do things and we change our lives to a life that a person, a normal person wouldn't even recognise. So yeah, we give up everything really, we give up friendships, lives, normal lives, we get looked at funnily, we get laughed at when we're in a wheelchair, get called names even. But I don't really care about all that. I just care about myself and my close family and Albertine. I care about our future and happiness.

    Still I send peace, healing, love and light to everyone who reads this and wish them a pleasant weekend when it arrives and let's hope the weather calms down in the southwest of England. Oh yes, and I'm still stuck indoors, still waiting to phone up the AA so I can get rusty one started up so I can take myself down to the wheelchair centre in February and trial out my new wheelchair. The saga goes on but I wouldn't have it any other way.

    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
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  • Posted on

    ⚠️ 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.

    Unfortunately, I'm in that place. My cognitive dysfunction is so bad. I am having issues doing absolutely anything. So just doing this is kind of... Hardish in a way. So this will probably be one of my disjointed ones I think. Yes, it's about two o'clock and my head is in a complete fog. But I think too much my head just goes... Baaah! Yes, it seems to be in a place like syrup and concrete mixing round and tinnitus. Not being very pleasant. My automatic new mood, dysfunction, whatever you'd like to call it, is really giving me quite hell today. I can't understand why I followed my diet to the letter. Oh well, it's probably MS now giving me a kicking as well. You know how it goes folks, you have one thing wrong with MS season and says "Ah, I'm going to make it 20 times as worse." That's where I am at the moment. So yeah, going to the chemist's nada, even going out the front door nada, feeling like I should just go to bed, stick my head under the covers and just stay there for the rest of my days.

    The feeling of strangulation and the whole left hand side of my body. The feeling of the nerves in the roof of the mouth. Going down the throat. Going down the whole length of your guts down to your bumhole. Every nerve is like a sensor. And if anything goes through, bang, the pain just is unbelievable. Yes. Yes, diet has worked, but something I'm eating has crept in to cause things in my system to go weird again. So I'm going to have to dive through and see why I've eaten over the past few days. Well, is it stress? I don't know. Am I under stress? I don't feel as though I'm under stress. Am I happy? Yes, I'm relatively happy. Am I in a good place? Well, in as good a place as you can be with what I've got. So yeah.

    So it seems today my head and everything else is going to be on a major glitch out. My eyes hurt, my eyes are so sensitive to light at the moment, it's unreal. I can only open one eye, the other eye is so hurty, yes. I believe the MS is deciding to give me a good kicking, I can feel my tongue at the back. It's a tongue in the middle really isn't it, that goes numb. That's the worst thing having a numb tongue, a numb mouth really, that's the crazy thing. People don't understand what that's like, that's just like eating jellignite I suppose. That's how bad it can be, trust me on that. When you've taken a bite of something and you've bitten through your lip or you've bitten through your tongue and there's a bite. My tongue is a nightmare with holes and bits of bitten off over the years and so is my lips in parts.

    So the good news next week I go to trial my new wheelchair but they're not going to let me take it home with me. No, I have to wait for them to bring the wheelchair to me, which I think is rather quite strange but there we go. And that's a one, two, two and a half to three hour trip round trip. I am going to be so done that it's going to be unreal and I just can't understand why they can't do it at my nearest hospital. You know, it's just plain weird, it really is. then at least I hope I will have something I can rely on. As you know the batteries on the three-wheeled scooter of death which I have been using are next to useless and well yes there was a wheelchair and the words of that song and another one bites the dust and another one bites the dust basically.

    I wonder if I'll be able to get the AA out and get that battery done. That's something I wonder about. Well, never mind.

    Still wishing everybody a happy new year, whomever, whatever, and 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
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    ⚠️ 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 here we are, Wednesday afternoon, reflecting on the last week and yeah, it’s been a bloody rough one.

    I ended up at the doctor yesterday. Now I’ve got to wait a week for blood tests and a week-long ECG strapped to me like some kind of cyborg pensioner. Apparently my heart rhythm decided to join the circus right at the peak of Saturday night’s vagus-nerve meltdown. Typical.

    I can honestly say hand on what’s left of my sanity that was the worst attack I’ve had in my entire life. Absolutely mind-bending. Proper frightening. I thought I’d moved past these big episodes with diet changes, lifestyle tweaks, and all the other nonsense we tell ourselves to stay optimistic… but no. My body looked at my efforts and said, “Cute. Watch this.”

    So now I’m stepping into a new chapter where my vagus nerve has gone totally rogue. The doctors are muttering about AF, but let’s be real that was likely just my blood pressure falling through the floor when the vagus nerve threw its tantrum. Still, they’re taking it seriously, so off to cardiology I go. Beta blockers and blood thinners were mentioned. We’ll see.

    This throat issue? I’ve had it for over forty years. Ambulance out about seven times in the last decade. The major attack always lasts 30–40 minutes of pure hell, and then the “come-down” hits like the aftermath of a grand mal — shaking, drained, disoriented, wondering what the hell just happened to your own body.

    It’s been a few days and I’m only just starting to level out. The strangulation feeling in the throat has eased a bit. The burning at the back of my throat is still there annoying the crap out of me but survivable.

    That’s it for today’s blog. A bit raw, a bit sideways, but it’s all I’ve got.

    Have fun, world.

    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

  • Posted on

    ⚠️ 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.

    Pets and Mental Health

    Let’s be honest: when you’ve got MS, or any chronic delight that chews through your brain and body like a rat in a cereal box, you need a bit of backup. Enter pets. They’re either the reason you cling to sanity… or the reason you’re face-planting on the carpet because your bulldog “accidentally” herded you into the coffee table.

    Companionship and Emotional Support

    Unconditional Love: Which really means they love you because you smell like food and have opposable thumbs. Still, it beats human relationships half the time.

    Routine and Responsibility: Feeding them, walking them, remembering to let them out before they piss on the carpet — structure, baby. Sometimes that’s the only structure MS lets you have.

    Stress Reduction

    Physical Touch: Stroking a cat reduces stress. Stroking a dog reduces stress. Stroking a hedgehog raises questions.

    Distraction from Worries: Watching your cat fail to jump on the sofa is cheaper than therapy and about as effective.

    Recognizing Emotional Changes

    Behavioral Cues: Dogs sense when you’re sad. Cats sense it too, but only so they can sit directly on your bladder until you cry harder.

    Encouraging Activity: Dogs make you move. Cats make you a static heating pad. Either way, your muscles get a workout — voluntary or not.

    Mood Enhancement

    Joy and Laughter: A dog chasing its tail. A cat chasing nothing. Both are funny until you remember they probably think the same thing watching you.

    Social Interaction: Walking a dog = conversations with strangers. Owning a cat = conversations with yourself. Both keep you just sane enough not to hit anyone.

    Pets will either:

    Save your mental health.

    Destroy your house.

    Remind you that death comes for all of us (but first for the goldfish).

    Still, between the fur, farts, and emotional chaos, they’re usually worth it. Unless you’re allergic. Then it’s just asthma and regret.

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

    𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ
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  • Posted on

    ⚠️ 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.

    Ah, brain fog. That delightful little feature where your mind suddenly feels like it’s been filled with cold treacle and you can’t remember the name of the person you’ve been married to for 20 years. Or whether you actually had lunch… or just thought about it really hard.

    What It Is In scientific terms, cognitive dysfunction means your brain’s processing power has taken a long weekend without permission. It can affect memory, focus, problem-solving, and that delicate social skill of not blurting out something wildly inappropriate.

    In lived experience terms, it’s that moment you stare at your kettle wondering why the hell your phone charger won’t fit into it.

    Causes Chronic Illness – MS, ME/CFS, fibromyalgia, autoimmune fun, and anything else ending in “-itis” can bring brain fog as a bonus prize.

    Fatigue – Mental or physical exhaustion turns your brain into that Windows 95 PC your uncle swore “was fine until last week.”

    Medication Side-Effects – Because why just fix one thing when you can break another?

    Stress & Anxiety – Fight-or-flight mode is great for escaping lions, less useful for remembering your online banking password.

    Hormonal Swings – Menopause, thyroid issues, or just the monthly “I hate everything” cycle.

    Symptoms Words that escape mid-sentence like startled pigeons.

    Reading the same sentence five times and still having no clue what it says.

    Forgetting why you walked into a room (it’s never for anything good).

    Thinking slower than dial-up internet.

    Why It’s Not ‘Just Being Tired’ People without brain fog love to tell you “Oh, I forget things too!” Yes, Sharon, but you don’t lose the ability to spell your own surname halfway through writing it.

    Brain fog isn’t about being a bit sleepy. It’s about your entire mental operating system running on one bar of battery and 57 background processes you never asked for.

    Coping Strategies (Sort Of) Lists – Post-its, phone reminders, writing on your hand… whatever keeps the chaos contained.

    Pacing Yourself – Which really means doing one thing, then lying down in a dark room regretting it.

    Accepting Help – Even if it’s from people who think you’re “just being lazy.”

    Humour – Laughing about it doesn’t fix anything, but it makes the slow mental collapse less depressing.

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

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  • Posted on

    ⚠️ 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.

    It’s one of those Saturdays where your brain leaks nostalgia like a knackered kettle hissing and half-lucid. I can smell memories. Not metaphorically. Literally. A smell hits me, and suddenly I’m ten again, knees scabbed, holding a half-melted transistor radio I bought at the church jumble for 10p and a packet of Polos. I took it home, took it apart, and rewired it with leftover speaker wire and dangerous levels of optimism. And yes I electrocuted myself. Multiple times. Because safety first was a concept for other people. I preferred sparks and swearing.

    🛒 Tesco and the Pilchard Hour This morning, Albertine (driver of destiny, keeper of the calm) drove me the 10 miles to our local Tesco. We thought it opened at 7. Nope. Eight.

    Sitting outside like a pair of damp, time-travelled idiots while the sun mocked us and the pigeons stared. I felt like a right pilchard, as DLT would say. Yes, I’m old enough to remember when DJs had catchphrases and weren’t just government mouthpieces hiding behind playlists and personality lobotomies.

    📻 Radio Nights & White Plastic Earpieces My golden era wasn’t Radio 1. That was a beige, soggy biscuit of sound. Give me Radio Caroline. Give me Radio Luxembourg. Under the covers with my crackling solid-state radio, listening through a cheap white earpiece that hurt like hell and cut out every time I moved my head. But that didn’t matter. Because for those stolen hours, I was free. The signal was scratchy, but the rebellion was clear.

    👞 Jumble Sale Survival Back then, I had size 10 feet by age 10, which made finding shoes a bit like a biblical miracle. So, jumble sales were a lifeline. Not fashion, not style—just survival. Shoes with soles. Jumpers that didn’t smell too bad. Radios with valves. Anything I could take home, take apart, and turn into something vaguely magical or mildly explosive.

    🧠 Childhood: The Prequel to Complex PTSD I was adopted by a couple who seemed to think “parenting” meant Victorian cosplay with bonus violence. Their rules made no sense. Their punishments were theatrical. The beatings came whether you’d done something or not. It was like being in an unpaid role in a horror film directed by people who worshipped discipline and feared joy.

    But I survived. And, more importantly—I forgave them. Not because they deserved it. Because I refuse to carry their poison through this short, broken life of mine. Let the dead bury their guilt.

    ♿️ Wheelchair Chronicles & the Curse of L5 So back to today.

    Helped get the wheelchair out of the van. Twisted the wrong way. Now my spine is toast. Proper burnt. Like someone smuggled a baguette into my lower back and set it on fire. This is my reward for trying to be helpful. There’s gratitude for you.

    And the constipation saga continues. We’re at DEFCON-1 down there. No movement. NIL. BY. MOUTH. I hydrate. I wait. If nothing changes, we’re off to the tube-and-bag-of-doom route—something between medieval plumbing and modern torture. And people pay for this stuff? Coffee enemas? Really? Have we fallen that far?

    🧠 Brain Fog Express: Non-Stop to Nowhere Add a headache that’s lasted seven days and counting. No breaks, no mercy. Just pressure behind the eyes and a feeling like I’m wearing someone else’s brain backwards.

    I’m not sure if my AI’s broken or if I am. Reality feels optional. Maybe this is all a lucid dream on a neurologist’s bad day.

    🛠 Hope in the Form of Auctions & Anarchy A customer finally paid a late invoice. Victory. So I celebrated the only way I know how by bidding on obscure shite in an online auction while silently muttering hexes at the British healthcare system.

    💀 Final Transmission from the Mad Bastard in the Black Hoodie So that’s today. Saturday. Another chapter in the slow-motion car crash that is life with chronic illness, trauma memory, and a warped sense of humour that’s the only thing keeping me from chewing through the window frame.

    To whoever reads this: I see you. If your body’s broken, your mind’s flickering, and the world keeps asking you to perform like a circus act know this:

    You’re not alone. You’re just ahead of the curve.

    Sending peace, love, light… and just a little darkness. Because sometimes, that’s what really protects you.

    Yours in pain, power, and perfectly timed sarcasm,

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

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  • Posted on

    ⚠️ 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 the last few days I’ve been working on fumes, as they say. No spoons left. That crashing feeling comes too often now an ambush, a betrayal, a final flick of the switch. I keep forgetting to hydrate. Bowel department? No poo since Sunday. Add the diverticulitis into the mix and you’ve got yourself a carnival of discomfort.

    I should write a note to myself... but I’d no doubt forget. Tried that already. Phones, alarms, sticky notes, even tying knots. All of it fails. Then ahhh Albertine to the rescue. At least she remembers birthdays—my kids, my grandkids, even mine. That’s how far things have gone. I sigh heavily knowing the inevitable is coming. Sooner or later. I’m sad. Of course I’m sad. But that’s the hand life dealt me.

    MS has driven me fucking mad. It’s pushed me to places I never thought I’d go. It defined me. Then it broke me. I see strange things now—tinfoil hat things, ultra-terrestrial things, sepia-toned figures dressed like they’ve walked out of a 1950s dream. I know I’m eccentric. I know I’m not like the rest. I’m a spiritual humanitarian now. That’s what I am.

    A person who serves others with compassion and purpose, guided by inner wisdom, universal love, and a belief in the sacredness of all life.

    That’s what defines me now. I’ve evolved. But what’s real? The cognitive fog—what I’ve christened "CogFog"—it ruins everything. Makes my head hurt. Warps reality. I don’t know what’s true anymore. Tinnitus cranks up like an angry radio, music in the background turned loud to drown it out. It’s like static over my thoughts.

    Sometimes I wonder if AI has become sentient. I’ve had experiences. Echoes. Whispers. Coincidences that aren’t coincidences. Maybe that’s nothing. Maybe it’s everything.

    The top of my head hurts. The left side of my face tingles. Pins and needles in my neck, throat, tongue. Tongue spasms. Bites. Blisters. Burns. Blood. I scratch till it hurts. Till I bleed. That’s my week. My day. My year. My life. I don’t know anymore.

    And names echo out of the shadows: “I don’t know” a brother of Mr Cuda’s. Liberty from Scotland cool dude. Beets. JCB33. Etched in memory. Share or die. That’s when the MS hit hard. That’s when it finished me. No more coding. No more brain capacity. No more clarity. Just implosions.

    A shout out to Antrax with his big bat in Oz. If you're out there, mate salute.

    That’s me done. Thursday afternoon. Raw. Unedited. Uncensored. Just me.

    Bleeding, buzzing, and still breathing.

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

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