Chronic Illness, Power Chairs, and Survival A Life With MS and Autonomic Dysfunction

⚠️ 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

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.)

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