health blog

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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