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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.
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
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.)


