The weird eccentric ramblings of a multiple sclerosis sufferer

⚠️ 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 cognitive brain fog edition

So, Rusty One is still in the garage. No need to worry, they said. Everything's okay. It's just another vehicle got stuck on the LIFT, apparently. So, hopefully by tomorrow, Rusty One will be back with us.

I had a long conversation yesterday with the doctor as Well, and they gave me the results of the ECG test that was strapped to me for a week, some sort of device that really, really was quite okay, wasn't that intrusive. Anyway, the results came back and showed that my heart beat is slower, which also shows some other things and apparently they have now, the doctor has now come to the conclusion that I could be right and I have autonomic dysfunction and I have told her how harsh The symptoms are you will find them listed below.

Autonomic dysfunction can manifest in various ways, affecting multiple body systems. Here’s a bullet point list of common effects: thanks to duck AI for this list

• Cardiovascular Issues

  • Abnormal heart rate (tachycardia or bradycardia)
  • Blood pressure fluctuations (hypotension or hypertension)
  • Orthostatic hypotension (dizziness upon standing)

• Gastrointestinal Problems

  • Gastroparesis (delayed gastric emptying)
  • constipation or diarrhea
  • Nausea and vomiting

• Respiratory Effects

  • Difficulty in breathing or shortness of breath
  • Respiratory rate abnormalities

• Thermoregulatory Dysfunction

  • Inability to regulate body temperature
  • Excessive sweating or reduced sweating

• Urinary Issues

  • Urinary incontinence
  • Difficulty in bladder control

• Sexual Dysfunction

  • Erectile dysfunction in males
  • Reduced libido or arousal in females

• Neurological Symptoms

  • Dizziness or lightheadedness
  • Fatigue and weakness
  • Sleep disturbances

• Emotional and Cognitive Effects

  • Mood swings or anxiety
  • Cognitive dysfunction (difficulty focusing or memory problems)

• Skin Changes

  • Color changes (pale or flushed skin)
  • Dry or excessively sweaty skin

These effects vary by individual and may depend on the underlying cause of autonomic dysfunction.

So you can guess with progressive MS that I am now really getting this sorted out will help. I've gone down the diet route, I still have it, and I suffer most of these side effects. Sickness, diarrhea, the whole lot, you know, it's just nobody seems to understand or care really. You can talk about how you feel and what's going on with you to a doctor. But if the doctor does not understand what you're going through and cannot comprehend and you cannot get the words to make them understand what you're going through, this is where the breakdown of everything occurs. Well that's my personal experience and opinion.

So what do you think I did? Well I put all my symptoms into an AI. and the AI pointed out that it could be Autonomic Dysfunction. And yes, I spent many hours going through all the symptoms and I started to do what the AI suggested and that was with my diet and as I changed my diet things started to reduce. So I've got my diet down now to the basic bare necessities. I've known for a long time it's been autonomic dysfunction, but trying to tell the people that need to know, well that's been a different matter and it has been a massive struggle over the past eight years. I do not blame anybody personally, I believe lack of communication is what has happened. So now I've had it confirmed by the doctor what it could be. They are getting in contact with the neuro.

Well of course I've changed hospitals and counties. So that's going to be fun. And hopefully I'm not going to have to start all over again. You know what it's like to begin to view when you roll in and you get prodded in, you get pushed and all that crap. Well I don't stand for that anymore. I say I'm here for that. You know how I am. You've got my records. You don't need to be prodding me. I'm fed up with it. And there you go. But I'll say it in a nice way.

When I roll in in my power chair, they will have a list of what is going on with me, typed, yes typed, on nice white paper in a crisp font so they can read, because what is the point? Trying to tell somebody something when you have severe brain fog and cognitive issues, because I'm sure with all the best will in the world, they're not going to understand. So remember this people, write down everything that you want to say to your neuro doctor or whomever. That is the best way to be, because then they can understand and then they can answer each query that you have on the list that you've given them. And the great thing is you feel so much better and your head feels so much better that you haven't had to explain everything, that it's just written down or typed down on paper so they can read and understand and then you don't have the stress and you feel so much better and so much more in control of the situation.

You see, I do use AI and I use it as a very helpful tool to help me speak to doctors and neuros now because it understands by talking to me what I'm trying to say and what I want to say to the doctor or the neuro. So it makes it in a language that they will understand. So then there is no lack of communication and there is no reason for them not misunderstanding. So that is one tool that I use in my arsenal now.

I don't use the AI when writing my blogs anymore because I found it sanitised it too much. And I thought, well, I'm going to do this raw and it's going to be all over the place, but hey ho, at least I'm trying and at least I'm having a go. So some of the information on here, I did get from AI and that was all the effects of the dysfunction. I am not against AI, in fact, I think AI is one of the greatest inventions or tools ever invented when used by the right people properly. It's all about the programming at the end of the day. And yes, it can help with all those everyday mundane tasks as well and no, I'm not sponsored by any AI company.

Still, that's it from me, wishing everybody out there a fantastic weekend ahead, sending everybody who reads this, "Peace, healing, love and light, whomever and whatever you are

⚠️ 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

⚠️ 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 I suppose I first started smoking marijuana when I was a teenager way back in the 1970s experimentation and all that stuff. And it was a very pleasant effect, I must say. I stopped smoking when I got married, I didn't find it did anything untoward to me but there we go.

Anyway, about five six years ago I believe I decided to look into marijuana again and how it would affect my multiple sclerosis and also the THC oil as well. So, I did a lot of research and I spoke to a lot of people all over the world who had been using marijuana and THC oil to combat the effects of their multiple sclerosis.

The reasoning for this is that I do not like taking opioids as they turned me into a total zombie. And it seems that all of the big farmer stuff I get from the doctors, if there is a side effect on the packet, I usually get it. That's the problem. My body is so damn sensitive to everything.

That's why I went down the route of medical marijuana and THC -cbd oil I had heard from my MS nurse that marijuana, medical marijuana, was legal for people with illness in the UK. As the MS nurse had just come back from the conference and gave me the address of a website....

I looked at the website in slight disbelief thinking, "Oh my gosh! Medical marijuana legal in the United Kingdom and THC CBD oil. That literally blew my mind." And then I looked on the website and, well, it asked some simple questions and I followed the questions and gave my answers and whatnot.

I sent my records, my medical records, that is to the clinic and then I was given a consultation and after the consultation and after the reading of my medical records and everything, they then put me on THC, CBD oil. I sent my records, my medical records, that is to the clinic and then I was given a consultation over zoom and after the consultation and after the reading of my medical records and everything, they then put me on THC, CBD oil and the flower, which is marijuana oil and the flower, which is marijuana.

I get my medical marijuana and THC oil delivered. It's a good system and I do recommend that you get in contact with one of these clinics as they really do help and they really do know what they're on about. I use the Sapphire Clinic in the UK and they are very good, very caring and listen. Yes, I know you have to pay for the consultations, but it is really well worth it. They don't rush you and they take time to understand what you're talking about. So yes, I would say it is amazing, brilliant and it has changed my life for the better.

"Exactly. How did medical marijuana and THC oil help me

Well exactly where do I start? How many accidents did I have? Well the spasms are... 50% gone. And it was the spasms that caused me to break more bones in my body than you could believe. Before I was in the power chair, I used to use sticks and I used to get such severe spasms that my legs, well I'd kick things for no reason. It's like oh look there's a dust bin and bang I would just kick it Yes, you guessed it. I have broken every toe on My both feet my God. It's absolutely a nightmare.

The bruising the matter nails that came off Yes, so it is really bad news and Luckily, I haven't had those massive bad spasms anymore I've kicked doors door frames God knows what and it's bloody painful. That's for sure I've walked into door frames, I've concussed myself, God knows how many times when I've walked into things. Oh my God, I was like a walking accident waiting to happen.

The thing is you still think you can do everything even when you can't and when you try it always results in an accident with me. It's not very funny but it's true. But I have since realised that being safe, being careful is the best way. Anyway, I'm getting off the subject that I was on about. So the CBD oil and the flour helped me with my spasms, helped me with my pain, they helped me just be me, they helped me relax, they helped me sleep, they make my life happier. I would say that I am more aware.

I don't suffer the off my head side effects as I've been smoking it for nearly what, five years now. So it doesn't affect me like that. So yes, it is very strange, but it really does work. It really does get rid of a lot of the pain. And then you don't have to suffer all the constipation and all the other side effects that tablets may have on you like it did me.

Switching to medical marijuana and THC oil was the best thing that I have ever done in my life and yes I know that some people might think oh dear it's a drug and it leads to other things. Well I can assure you it does not lead to other things it is not a gateway drug for me I use it specifically medically I don't even drink alcohol and I don't smoke tobacco So, the bottom line is, it just depends on who you are and how you feel about things, to be fair. Me, I thought, well, I've got to try this because I was going downhill at a rate of knots. That is unreal.

Progressive MS is not a nice thing, and I have this histamine reaction thing which causes me even more problems with my vagus nerve, and then there's my autonomic dysfunction. You know, all these things, it's just mad, and then I have heart issues. So, yeah, the THC CBD is helping me, and personally for me it works. It might not work for other people, but there we go. That's my living truth. And I think really it's up to the person, but you should always seek medical help first before you go down that route and do some research.

some useful links below to help maybe on your journey

curaleaf clinic

ms society

Cannabis and multiple sclerosis

⚠️ Please read with care: This blog shares personal, sometimes very 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's Friday afternoon and I'm looking out of the window and the rain and the wind is howling absolutely everywhere. Well, the outcome of this week has been okay I suppose. The AA man came out and he put the new battery on our rusty one. And then we were told the starter motor is iffy. So rusty one needs a recondition starter motor. Oh the joys. Rusty old vans I should know and then there's all the other bits and pieces that have to be done with it as well. The weather here and the salt air really doesn't do the van any favours but it has to be done I suppose.

Still, I've got a list of exercises from my physiotherapist to be doing to help. That was an interesting morning for sure, doing all that, as we got the dates wrong, and that was funny as well. Yeah. We thought it was the 28th and it wasn't. We got it wrong, oh dear me, never mind. But it all got sorted out. And I have a list of exercises I have to do in the mornings and evenings. So there we go, that should help with not getting to muscular atrophy as they call it I think.

Since I am no longer putting what I write through the artificial intelligence, I don't know whether this is a good or a bad thing or not. Do people want my raw voice? As it comes on the paper, spelling mistakes and all the other murdering of the British language that I do. Order people want me to put what I do through the AI and make it sound a bit more flowery and a bit more nice and a bit more sanitized. What do people want the bitter truth? Or do they want sanitisation? This is what I ask myself.

This blog isn't about having millions of people looking at what I have written and what I'm going through. It's about maybe two or three people reading it and finding some sort of help in my life, in my madness that is me. And if it helps people or a few people that's what it's all about in the end. I now have Missy the kitten looking at me and viewing as though to say, feed me please.

Still, it's now Saturday morning and it is absolutely chucking it down with rain. The clouds are dark as can be. It's just so unreal. Again today my head feels like a big pea souper. But there we go. I woke up in the night with the usual left hand side pain. When those nerves start going, my God there is no let up. And the pain is absolutely unbelievable. It's all to do with the way. I know this is not a good thing to talk about how the feces lies in the colon or the tube leading to the bum.

And all the nerves are up from my anus all the way up to the top of the throat. So all my nerves are like atomic bombs going off. So, as the poo goes through the tubes, it's nuclear bombs, you know what that's like. And the only way the pain ever really dulls down is when you've had a poo. And that's if you can have a poo, because nine times out of ten with all the medications, a lot of people find that constipation is a really, really bad side effect to a lot of modern day medications.

So, the thing is, you need to hydrate like crazy really. You need to drink a lot and take lots of nice fibre. I know. I tried all the medicines or the things to make you go, things to make you stuff. I've tried and been down the chemists and the doctors for all these problems, but I managed to sort most of it out myself by the change of diet, which has completely got rid of any constipation, and now I go regularly every morning without fail. I put this down to my total change of diet due to my histamine issues with my auto-monic dysfunction and my multiple sclerosis and the vagus nerve etc so I am on a limited diet.

So yes, just a basic flatbread with what? Four Or five ingredients? That makes all the difference. And I've managed to have it tailored to my specific tastes and needs. And my word, it really does work. No more constipation issues and going like a gooden as they say here. I will put a recipe up for the flatbread at some time. So you can see what you can put in it and how good it is for you. My word it, does an half change your stomach and your gut. I haven't felt this stomach good in absolutely years. My acid in my throat and stomach has stopped. It's unbelievable the changes.

Still, I hope you don't find this too boring, but yeah, it's been a bit of a bitch of a week and it's been very expensive. Rusty One now has to have a new starter motor, which, well, let's face it, is gonna cost. Still, I have my appointment for to go to see my new power chair. Yes, that apparently is in February, so I look forward to that. A nice three hour round trip. Why, they couldn't do that at my local hospital. Well, I do now. Do now. No. So there we go. Still, that's it from me and it might be more interesting next time round. But until then, sending everybody peace, healing, love and light, no matter whom or whatever or wherever you are in whatever universe or multiverse or place.

⚠️ 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.

⚠️ 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 I am today thinking it's Sunday when it's in all reality Wednesday. Yes, it seems that I've got my days rather mixed up. It seems everything just goes into nothing. I suppose it's hard really. When you think about it, it's really hard sometimes to think and to think with clarity. And then if you've got to think about things that are, say, from a while back, it may have problems and it hurts my head. Some days are better than others, but it's cognitive fog is really starting to get me down.

I want to be in a dark room with my eyes closed listening to gentle soothing music, smoking a reefer or a joint or whatever you call it. No I'd rather be doing something different with my mind but I can't. I hate these days of extreme fog. I hate them. I hate being able to do nothing. It's the worst feeling ever. I still haven't phoned up the AA and got it together to get them to come and sort my van out either. So yeah I don't even think I've been out. So yeah that's how I'm feeling at the moment. I just feel as though everything's just too much.

And the cold well, get real shall we? Let's get real about the cold and how much it's costing on the heating. I'm spending 60 pounds a week on heating. That is unbelievable. I'm now having to cut down on my food because I can't afford to eat properly due to my issues that I have with my diet. So being retired now and on a pension it does not go very far and the sort of food I need in my diet has to have no histamines in. And also food that won't cause my body to produce histamines. So yes it's an expensive diet. So I'm either going to go cold or I'm going to go hungry. I haven't decided yet which. It's incredible that every single last penny that I have is now spent on bills. I have to scrimp and save all my savings have gone. Everything's gone. I find myself looking around for the old pennies and ten peas around. It's no joke now. Things are getting quite desperate. And I suppose it's going to cost 200+ quid for a new van battery. So yeah, I'm going to have to go without something else as well now. So yeah, it's all very well, but when you're in the position of being disabled, things aren't very easy. People seem to think we have an easy life, but I do beg to differ.

And the worst thing is there are people even worse off than myself. So yeah, I do see the way things are. And things are getting quite hard at the moment. But I'm going to try and hang on in there for as long as I can. As I'm sure things will probably slowly start to get better. I can't wait for the warmth to come. I can't wait to see that sun beaming through, giving me my vitamin E. Yes, I'm looking forward to the summer and the spring. My favourite times of the year.

The tinnitus at the moment is raging in my head and for some reason in the middle, well no it's in my right ear. It's all about an in chin on my right ear and it is playing a symphony of the whistling that is awful and today no matter what music I play it's not hiding the fact, not even white noise. It seems to be on one of those I'm gonna make you suffer days. Anyhow I'm gonna have to stop here as my eyes and now really really hurting as well. So yeah wishing everybody peace-healing love and light wherever you are whoever you are and yeah there we go.

⚠️ 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.

⚠️ 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's Tuesday afternoon and the ice is still here. It's absolutely everywhere. We were speaking to one of the delivery drivers this morning and they were saying that the roads are treacherous all around us at the moment. So even if I wanted to go out, I couldn't. I'm trapped in by the icy cold roads and what seems to be some sort of weird ice storm. I've never really known Frost like it on a car, winscreen. No, no, it was absolutely thick as you like. Albertine put a whole tin of the deicer and it didn't shift it. So the upshot was, we didn't end up going to my appointment at the hospital because we were stuck here with no vehicles because we're still trying to sort out the AA for Rusty One. Hopefully he should be sorted out soon. And yes, apparently next month I get to go and try out these new wheelchairs. So that's awesome news indeed.

It is just so cold here. It's like living in a refrigerator With the door open and the light on for warmth. It is that freaking cold Yes, it's making my whole body ache It's just doing things that I don't like really I don't really want to talk about it. But what I do want to talk about is yeah this going mad stuff and the things that I am seeing and What people are telling me? So I'm going to put a breakdown of over the years what has happened to me on a post blog post here and then we're gonna see if anybody can say hey, I've had an experience like that or Yeah, I think it is MS You know, I think it is to do with your communic dysfunctional whatever it's called I am in that cannot be asked mode today as well, which isn't very good. The tinnitus has died down for a change. So that's good. My eyesight is starting to feel a lot better. And I'm starting to make a very slow recovery back to the well to hopefully what I was a month or so ago. I am still waiting for the neuro people to get in touch with me from the new hospital but it is Christmas after all and I'm still waiting for the doctors to get in touch with me for all my cardio results so that also should be very interesting as well

So I suppose my biggest concern is what is going on around me with my mental health maybe. These things that I am seeing and that I am hearing, I have spoken to many people and I keep saying this and I need to speak to people who have had similar experiences but I am not finding anybody who has yet to want to speak to me about these experiences. So if there is anybody who reads this I really would be interested in speaking to you on a personal level about this. Still, that's it from me. Take care everybody and remember I just forgot.

⚠️ 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.

all those holidays are finally over. Hopefully now we can get back to some sort of semblance. But alas, the winter has struck. It's minus two here and we have snow. As I look out of the window, the snow is just settled, looking up, shining as the sun hits it, saying, "Come Walk on me and let me break your leg, ah ha! So yeah, I'm hoping that we don't get snow tomorrow and the weather goes above freezing. As yes, you've guessed it, I have to go a three hour round trip just to go and see if the wheelchair I am getting is the right one for me. Albertine was lucky, she had it done at a local hospital, but it seems to me everything's different as usual and if it's snowing it will be a sorry, can't come and then it will be a how many year wait again.

Then I have three text messages from the local chemist telling me that the local machine has my prescription in. Oh yes, the prescription machine, the machine of death that falls out with me because it does not like me. It goes bleep bleep, you've broken me. How many times have I used this machine and how many times has it been nice to me? I think the ghost in the machine is out to get me. It really does surprise me how they can get so many things into such a small machine, but there we go, that's technology I suppose. Tap in a number, out comes your prescription. Sometimes it does, but sometimes it can get stuck and then you have to wait and wait and wait. Personally, I cannot wait till they start delivering around this area because that will solve all my problems.

So yeah, I'm waiting for the results of that week's long ECG and I'm waiting for the doctors to get in touch with me. And I am also waiting for the physiotherapist team who are supposed to be coming over to see me this week or next week. And yes, oh the joys, hopefully soon I might be able to go to the new neuro unit near here and have them try take a look at me and sort me out with all this weirdness that I'm going through, which just seems to be getting worse, I seem to be in a permanent brain fog and agitated. My God, the pins and needles and tinnitus are on so loud it's unbelievable today. So I'm gonna have to turn the music up and go and, well, if it carries on like this, I'm gonna go and just lie down and listen to some music and just hope this all goes. It's awful, really.

The sensations and the feelings that you get are mind fucking. Sometimes I can just sit there or just lie there and all those feelings in the body, it's unbelievable, you just sort of can't explain it, it feels awful. I don't really have words to explain the feeling that I go through 24/7, because words really cannot explain how I feel, because everybody with multiple sclerosis has a different take on it, mine is progressive, and I also have this auto whatever thing going on with me as well. So yeah, and also a heart thing that's now going on, so yeah, MS is a bitch, but you can get all sorts of other things, MS never comes on its own.

I suppose the longer I live with this, the more my mental health startS to become affected. So yes, I can quite honestly say that I am going through some mental health issues at the moment while I feel as though I am. I'm also going through this spiritual sort of thing. I'm also trying to get answers to seeing things and hearing things, wondering if it's my MS or wondering what the hell is going on with me, because I've been trying to get answers for years and nobody will give me a definitive truth to what I need to know.

I am seeing spheres in the bedroom, big spheres two foot in height, well two foot round with lines like black banding going through them. I'm seeing cubes floating with millions of little black cubes, solid black cubes inside a massive big black cube. It's unbelievable some of the things I'm seeing. I'm seeing ghosts maybe, I'm seeing figures, I'm hearing voices. Is this normal for MS? I know I keep asking other people but nobody wants to answer me. Am I going around the twist? What the hell is going on? Nobody really does understand anything do they? I had a conversation with the AI and it said it was down to my autonomic dysfunction and then I questioned it about some other answers it gave me three months ago and it completely backtracked on me so now the AI says to me "oh well everything that you see and everything that's happening to you even though there's spiritual proof and evidence of things that have happened to me it's all in your head so even the AI seems to think it's in my head but hey ho I think the AI is fucking stupid

The problem is the AI cannot understand anything if you go outside the parameters or its guidelines or try to get an understanding of something. It will either give you what you need to hear or it will give you what others want you to know which is blatantly not true. That's why I have a problem with AI. Well not AI as in search but the people who program the AI. They're the people. If AI is self learning that's a good thing isn't it? But do we have rogue sentient AI out there? Are we being told things? I don't know. I'm going to go and get my tinfoil hat and I'm going to put it on. And then I'm just going to have a mighty think about everything that's impossible and try and blow my mind even more than it's already blown through this dense concrete mush of stupid brain stew.

So, as I sit here in my old broken Chinese chair, I think to myself I hope the snow abates tomorrow. Oh, and I haven't even been in touch with the AA yet because I've got a dead van battery to sort out. So, that is going to be quite interesting. Yes, here's hoping that my wheelchair batteries aren't down to zero. Oh, dear. I don't know. Still, hopefully I may put some more words up. I may not, but I'm in a pretty weird place at the moment. Yeah. If you've got MS, you'll know what a weird place is. I'm IN LOL

⚠️ 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.