chronic illness life

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

please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

A deeply personal story about life with multiple sclerosis, resilience, and why awareness must go beyond a single week.

Good afternoon fellow humanoids and nhi. It appears I have been living under a stone. It is MS Awareness Week. Indeed, yes it is. There is a problem though. It should be awareness all year round and not for one week of a year. Yeah? I think many of you would agree that there should be awareness about MS and all illnesses and all chronic illnesses. Not just for one week or just one day of a year. People should care all year. Why just for one week? It doesn't make any sense whatsoever does it really?

It's all very well. Some people who have MS, like myself, find it difficult to go on all these activities that everybody else seems to be able to go and do. I for one just don't have the energy anymore and I'm in a power chair and why would I want to go and do archery of all things. Now I couldn't even pull the string bow back. That's how bad things are with me and hell I'm retired now as well. My body is completely fucked. Why would I want to go doing things to make myself feel worse? No I don't.

So yes, I can appreciate some people with MS can do these activities, but there are a lot who can't. And I think probably we feel maybe a little bit left out somehow, because there's no MS groups anymore anywhere. People with MS don't go to meet anywhere. And does the MS nurse say, "Oh, I know, let's start an MS group up for people to go and meet once a month." You know, that would be a nice thing, but those sorts of things don't happen, do they? I think people would like to meet up and have a bit of fun, have a chat and just generally have a couple of hours of unabashed fun. Why not? You know, not just being stuck at home 24/7 doing nothing and being left to rot. But that's only my personal opinion.

There are many things I have had to give up because of multiple sclerosis, some of the things I dearly loved doing So yes, I tried to live on the edge up until I retired. I suppose I was a bit of a rebel. I was a bit of an outlaw. I did things my way. I always have. I'm not one of the sheep. I'm not one of the crowd. I'm an individual. I have a voice. Yes, and I'm different and I'm eccentric and I am very proud of that fact. I ripped my blinkers off many years ago.

I am still learning many many things. Yes, I am and I'm having a great deal of fun learning. I'm using my mind. Yes, I have severe brain fogs and yes, I have severe tinnitus and it is very challenging indeed for me, but I'm never going to give up, even if I can only do ten minutes in a day or even an hour in a day. That is an achievement. Doing a blog post is also an achievement for me as well. Going out, just the local shop, is an achievement for me as well. So yeah, things for me are pretty bad having progressive MS and also this autoimmune dysfunction, which means I can't go out in the summer now because of the histamine from the flowers etc... Well, the hay fever stuff. So there we go. I can't win.

But what I am doing, I am constantly evolving and changing my life around, so as my multiple sclerosis progresses, I progress in ways of trying to make my life better. So it may take away my motorcycle riding at the age of 65. Yeah, now that was a complete blast, I can tell you. Yeah, ha ha. But it was an 1100 trike I had specially built. and I managed to stay on the road with that for about 20 years. So that was a way of staying on a motorcycle. And yes, I even joined a few motorcycle trike clubs as well and got involved in clubs and all sorts of different weird things. But there we go. I did not let my illness stop me. In fact, my illness spurred me on further and further to be more than I was even.

So now, it's the computer and doing all the other things that I like doing as well. And I'm still learning and that makes me happy. So yeah, as long as I take it steady and don't overdo it, I think things might be okay. But I don't know the meaning of take it easy, so I always end up overdoing it or hurting myself. You know, that's just one of the things when you have in bought up like me, when you see something that might need doing, you do it. And well, when you're say 20, 25, 30, easy job, but when you're 66, Yeah, it's easier said than done.

So my words to everybody is, having a chronic illness, for me, has changed my life, perversely, for the better in some ways, but I will say, I'm never giving up, I'm gonna carry on fighting 'til the bitter end. And yeah, I'm not gonna let it beat me.

Still wishing everybody that reads this blog, peace, healing, love and light, no matter whomever or whatever you are, in the world or universe or multiverses even.

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

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

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

please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

Good morning, good afternoon. Hello fellow humanoids, and I trust that you are all well. Whomever or whatever you are, or maybe.

So, the weekend has finished. And the fog here in the southwest where I live is a real big pea souper, and you can't see out the window for more than about 30 or 40 yards ahead. quite eerie quite strange. I am still getting used to this text to speak and speak to text software that I have installed. And it seems to be causing great deal amounts of problems with the punctuation. So it makes things even more confusing than they usually are. Oh dear, dear me!

Still, I am getting on well with Zorin Linux. It is absolutely amazing and I am finding it even with my cognitive issues and brain fog. Quite easy to use. It has some really good accessories if you are disabled as well on there and it is quite easy to use. So the change over to Total Linux has been very good indeed. Quite a pleasurable experience, not as bad as I first feared. So yes, it's just a case of getting used to different programs and yes, I am sat there looking at things thinking, how do I do this? But it's all great fun. It just reminds me a little bit of Windows 98. And that wasn't too bad. Well the second edition was better on Windows 98 I must admit.

But then again we all have to move forward with progress. Yes, I think Linux is the way forward as Windows has lost its way big time. Yes, and I even see on the phone front that Android is starting to lose ground and there are now Linux phones. So I might even have a phone soon with a Linux operating system on there. So how much fun would that be? I think that would be totally cool stuff.

At the moment the kittens are well not kittens anymore I suppose they're nearly six months old and oh boy they are being really really fussy with their food indeed. The amount of food wastage is not too much but trying to find what they really like and not leave is quite a thing these days. Yes, and both kittens, well, cats now, we think have definite Siamese in them. They are very loud mewers indeed, oh my god. But soon they go to the vets and they will be spayed, so that will be good fun for them for two weeks of wearing weird space helmets and me laughing and watching them bump into things should be good. But at the end of the day I don't need two female pregnant cats with litters and litters of kittens everywhere. Well, I'm eccentric as it is, so could you imagine everybody saying that weird man with the power chair and the house full of errant cats and kittens running everywhere? That's all I really do need. I have only just found out as well that you have to have your cats micro chipped as well, so they're going to have to be micro chipped. Well, I haven't been a cat owner for over 20 years, so I guess well. We didn't have microchips in cats in those days. But I do remember as a young man growing up back in the 70s and 80s, the rumors of people finding cat bells and cat ID tags in certain restaurant foods. I know it was all rumors at the time, but hey, there we go. That was then. But this is now.

The tinnitus seems to be calming down. It's not as loud as it has been. It seems to be on a very low hum, but of all the time. The moment I get any stress though, the tinnitus goes wild in my head. It's kind of funny. But there we go. I My dad had phoned me on Skype. That's my father in New Zealand. And we were chatting and we were going past a place in North Devon where there was this tower. And as we drove past the whistling or buzzing or humming in my ears started at that point. And it hasn't stopped since then. It's very rare that I get a break from it these days. But it's very strange. I cannot really say anything to help anybody who suffers with tinnitus apart from music usually helps or relaxation, not talking, sitting in a quiet room. I've tried all sorts of different things, but in the end you just get used to it. It's just something that's there all the time and you just can't get rid of it.

As everybody knows, the worst time is when you wake up. Yes, I suppose six o'clock in the morning when you're awake and your whole body decides that it's going to be dysfunctional for the rest of the day. Yes, those mornings, those mornings that you just feel like you want the world to swallow you up. When you feel like what's the point with the spasms start kicking in and your legs and arms are just shooting off in all directions, that's not pleasant enough. then your tongue and throat starts giving it hell. Yes, and then the low level autonomic dysfunction kicks in as well. So you've got this really weird feeling that the autonomic dysfunction causes, then you have the progressive MS with all the nerve pain that you also suffer to varying degrees in varying parts of the body. Yes, so there you are. If you've got the whole lot and then of course there's the bowels and that is a totally different ballgame as well as everybody probably knows.

But sometimes, you know, this has been happening every morning for years and years and years for me. And you start getting used to it. And you start thinking, what is the cause of this? Why is this really happening? Why are my bowels and my stomach and whatnot? Why are they all giving me hell? And then I found out it was my gut and the food that I was eating. I thought that vegan food was healthy, but I was wrong because of my autonomic dysfunction and the "Histamine" thing. I cannot eat any food with histamines in, or any food that will cause my body to make histamines and make, you know, otherwise I go into total meltdown with my body, my MS goes berserk. It's just unbelievable. I have spent over 20 years trying to explain what the hell is going on with me to neurologists, to doctors and guess what? They've only finally started taking notice of what I am saying. It's quite unbelievable when you go in there and they just look at you and you tell them how you are and they just look at you and some neurologists are fantastic but some, well, aren't the best. Some are not human, I don't think. I think they're non humanity sort of things stems from their training and the job that they do because it must affect them telling people of conditions and suffering every day. It must be a really, really hard job to do. Especially if you have a very high empathy towards your fellow humanoids.

I have been meaning to do a bowel special blog post but I keep wincing every time I think about catheters and things like that. So I think that's going to be a bit of a time coming somewhat. The only thing I can suggest for good bowel health is healthy eating, reading the labels of what you're eating, and also remembering that it may say it's healthy on the packet, but the ingredients might not be. Yes, bowel health is very important. When you have had a camera up your rear end a few times, then you'll realize that healthy eating, healthy food and healthy bowels mean good things happening because then your gut will repair itself and then that will help towards healing the body and helping the body stresses which can only be good for people suffering with chronic illness.

So I have decided that I need another project because I do have some headspace. So I have decided that I am going to make my own AI program and that should be fun. As apparently it is easy to download all the software that you need and of course it is free and i thought well why not. The worst thing that can happen is I might end up having to reinstall my machine. But I could always use virtual machine I suppose, but there we go. I suppose I could get Albertine to put it on her machine and then if her machine goes bang, then I haven't got a problem lol But I think it is highly important to try and keep the brain functioning. Even if you have severe brain fog or cognitive issues, So I am wondering how many years this will take me to do. Some people it might take days, but me, well, I suppose it's going to take me rather a long time. And then there is of course getting round to doing this as well.

The paradigms fade The masks fall to celebrate the void and the madness they made from my living hell

Still, sending everybody peace, healing, love, and light, whomever and whatever you are.

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

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

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

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

well fellow humanoids So, as ever, the nhs have screwed up yet again. I asked months ago to be transferred from one hospital to another because the neurology department where I'm at at the moment is not the best and I wanted to go to the better neurology department. Well, I've been waiting for months for an appointment. I received two letters today and apparently they've never even heard of me at that neurology department and they said even if they had it was so long ago we've destroyed all his records.

So you can guess that I'm a bit pissed off with everything. With everything I've been going through over the past load of months. And I thought I was actually going to get somewhere. But again, I have been proven wrong. I have to suffer just because somebody can't do their job properly.

They must think that I love having autonomic dysfunction and progressive multiple sclerosis, and have a B bundle block heart issue and a weakened heart wall and everything else that's going on with me. Because as far as I'm concerned, I can't see anybody who really gives a fuck about me, apart from my own family.

They must think that I like being in pain 24/7, they must think that I like not being able to eat anything due to my condition. And then if I eat the wrong food, I end up critically ill sometimes. Really, they don't give a damn. And nobody even listens. You're patted on the head and placated.

So now I'm completely stressed out due to somebody who cannot do their job properly. I feel absolutely sick to the stomach of all the gaslighting and BS that I have had to put up over these past 40 odd 50 odd years. It's been un bloody, believable what I've had to go through and how badly I've been treated. It seems the louder you shout, the further back in the queue you go. It just seems like nobody gives a damn anymore.

So, it's Tuesday and I am completely stressed out. My neck is no better. It is absolutely unbelievable. I had no sleep at all last night and my autoionic dysfunction has been on the edge as well. So yeah, I could have done with some better news but there we go.

Sending peace, healing, love and light to whomever or whatever you are. Sentience is a thing of wonder.

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