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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.
please remember I suffer with severe cognitive dysfunction this may be a confusing read...some AI medical content
Well, it's Monday afternoon and I am in quite considerable pain. I can't move my neck to my left or to my right and have been unable to do for a couple of days. Pain is absolutely unbelievably bad news. I'm still carrying on, but let's hope it goes soon. Apparently, I've got some ossyphates in my neck, that's bone growths that also complicate things with
the progressive MS and the autonomic dysfunction, yes, and a few other things wrong as well. But yeah, multiple sclerosis does not come on its own.
It can cause other things to happen to you. Indirectly due to the MS and what it does to your body via the nerves. Find enclosed a short brief statement from an AI about what it does.
AI Stuff Worst-case impacts of progressive Multiple Sclerosis (MS):
Permanent mobility loss – progressive weakness, spasticity, and balance failure can lead to needing a wheelchair full-time. Paralysis – partial or, in severe cases, near-complete loss of movement in legs or arms. Severe fatigue – crushing, daily exhaustion that doesn’t improve with rest. Chronic neuropathic pain – burning, stabbing, electric-shock sensations. Loss of bladder & bowel control – incontinence or retention requiring catheterization. Sexual dysfunction – reduced sensation, erectile dysfunction, loss of libido. Cognitive decline – slowed thinking, memory problems, poor concentration (“brain fog”). Depression & anxiety – very common; risk of suicidal thoughts is higher than in the general population. Personality or mood changes – emotional lability, irritability, apathy. Speech & swallowing problems – choking risk, need for modified diets or feeding support. Vision loss – optic nerve damage leading to blurred or permanent partial vision loss. Tremors & coordination loss – severe shaking that interferes with eating or writing. Muscle contractures – limbs becoming stiff and fixed due to prolonged immobility. Pressure sores – from long-term wheelchair or bed use. Recurrent infections – especially urinary tract infections and pneumonia. Breathing weakness – in advanced stages, respiratory muscles can be affected. Increased cardiovascular risk – reduced mobility contributes to higher risk of blood clots, deconditioning, and secondary heart strain. Shortened life expectancy (in severe cases) – usually due to complications rather than MS itself. MS doesn’t directly damage heart muscle the way a primary cardiac disease does. But it can disrupt autonomic nervous system pathways in the brainstem and spinal cord — the wiring that controls heart rate and rhythm. When those signals misfire, you can see: Heart rhythm abnormalities Conduction issues (like bundle branch block) Unstable heart rate (too fast, too slow, erratic) Blood pressure dysregulation Orthostatic intolerance (feeling faint on standing) On top of that: Reduced mobility → deconditioning of the cardiovascular system Chronic inflammation → increased long-term cardiovascular risk Severe fatigue → less activity → compounding strain on the heart So while doctors sometimes treat heart issues as “separate,” in progressive MS the nervous system disruption can absolutely be part of the cascade. And the frustrating bit? It’s often under-discussed.
thank you AI
You see it's not the multiple sclerosis that will kill you. It is often something else. But as the AI pointed out, it's not very well discussed. It's not a very big topic. So I intend to research and do some more on this topic because it might be very interesting to some people.
I don't think people realize just how our immune system screwed. People with MS and progressive MS have a completely screwed auto immune system. So, just a common cold to us is the worst thing that can happen. Imagine flu or something of that order. That is the worst thing that can happen to somebody with MS. Or a chest infection. That's not the best either. Or sickness and diarrhea. That's even worse. I mean, there's some of these things people don't realize. When you have an altered or a dysfunctional immune system, it causes havoc over all of the body. Yes, it does. It causes total havoc.
So you have to relearn how to live your life daily because of all the issues that you have. And to be honest, people probably wouldn't realize what you have to do just to overcome one or two simple issues in a day. The fatigue, the brain fog, and the sheer pain and the sheer pain in the head and the pain in the body. And that feeling in the head of, I just can't go on, I've just got to go and lie down. And then when you lay down, you're just as bad as when you were standing up. Yeah, that's fatigue, mental fatigue, stress, and all those things that other people kindly put in a cupboard. and politely do not talk about either, because it is an emotive subject between couples, I would imagine, and even parents and children and parents Who are unfortunate enough to be dealing with multiple sclerosis or any chronic illness.
So, I have been trying the Linux Mint over the past few days and it has been going quite well. I've only been managing bite size 10 minutes here and 10 minutes there. But I must say I'm learning one or two new things a day and I think that's just enough to be remembering. So on this blog post I decided to use AI Help with some of it, but not all of it, just the bits that are medical so I don't fuck up. Aha!
The weekend was quite fraught with the kittens who were in season and Missy the kitten has taken to jumping on the top of the door and looking around the room and mewing at us. So yeah, that's all good, isn't it? So she's done most doors in the house now and we've got scratch marks up and down doors. Oh well, that means Tom the painter man's going to have to come round and sort that out.
Still, I suppose it's the physiotherapist this week, but I may just put him off because I feel really bad, and I think that's what I'm going to do. Hopefully by the end of this next month, we should have the new garage door and side door fitted. We've been waiting for quite a time for this. And hopefully it will coincide with my new power chair, the quickie 300 that I'm getting. I've been waiting a few years, but it's definitely worth it. I'm going to be able to get out and about, and I'm able to go out and live my life and do those things that you just cannot do on the three-wheel trolley of death.
Talking of the three-wheel trolley of death, we have to head out in the week to go to the chemists. To go and see the AI machine of certain death, destruction and dementia. The chemists machine that distributes the prescriptions. Yes, it always seems to go funny when it sees me it will break down. Yes, it is a machine that hates me. But my three-wheeled machine of death, let's hope the battery is up to doing what it needs to do. As yes, how many more new batteries do we need this year? and the three-wheel trolley of death with the brakes that are non-existent and the balance of a drunk kipper on a night out with a jellyfish whilst drinking whiskey.
And changing the subject totally, we have seen quite a few white orbs in the living room. We have managed to record them on infrared cameras. And we are looking at the film and seeing what they could possibly be. As many years ago, I would say 30 or 40 years ago, I was handed some photographs by some very strange people claiming to be reporters from a local paper. And they handed me these photographs. And it was pictures of fields and they had these white orbs. And they were bigger than footballs. I would say two or three times the size of footballs. Now, funnily enough, I put these pictures through AI because I thought they were fake. And the AI said these photographs were genuine. But going back, this is probably the early 90s, late 80s when this paper came round. And anyway, I had contacted the paper and they'd never heard of these people before. So yeah, that was quite a mind fuck.
This is when all the great strangeness started And in real terms has never since gone away. Just because I reported something, 'bufora' and it caused a chain of events which, to be honest with you, has blown my mind for the past 42 plus years. But still, that's life, as they say.
Still fellow humanoids, I trust you had a great weekend. If you didn't, I can well understand. Anyhow, sending everybody out there, peace, healing, love and light, no matter who or what you are. Especially the sentient ones from all the weird dimensions and places out there. You are no doubt watching us. I'd like to say a big hello, make yourself known.
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.)
