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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. no AI written content
Hello and good morning fellow humanoids.. Well, it's Sunday morning and it's very sunny here in the southwest. I must say the sun has burst through the clouds and it looks quite warm out there. But I must admit it does feel quite cold in the chilly breeze. Yes. Still I wish everybody well this Easter weekend, and hope that you are all having fun. Well as much fun as you can be. I have been looking online and looking at local events going on around my area and as much as I would like to go to certain events, there is absolutely no way I can go because they don't make things very accessible and easy for people in power chairs unfortunately.
It seems in this day and age, if you're in a power chair, you're just still as trapped ( on many occasions trapped in a drs office lol ). But then again, with all that, you would have thought that people by now would have made things accessible for people in wheelchairs and also disabled people. Yes. But that is not the case as everything costs money, and when it comes to the bottom of the pile and things to be spent on, that's usually disabled people as a rule.
My main gripe is the way people park their vehicles. I know people have to park, but why do they have to park Half on and half off the pavement so I can't get my power chair passed. So that means then I have to go on the road and the police can do you for it as well. So yeah, it really is annoying. And you know, that really does piss me off. And you just wonder Why? They haven't bought in any laws to stop people parking on the pavements yet. That would solve that problem easily. But there is a further problem. Houses these days are built with hardly any parking, so nobody's got anywhere to park their cars. Plus people have more than one car, so I can empathize with those people. Because parking is an absolute nightmare, because when people build they don't think about parking, they only think about how many houses they can get into a certain area, and secondary is parking. again money over common sense.
It really does bother me sometimes. I have lived in and seen many properties that have been converted for disability use. And the total waste of space is unbelievable. You know you would have thought they would have disabled people to help design the properties and their needs rather than just somebody thinking they know what a person really wants. Because at the end of the day, does the person really listen to the disabled person's needs? Do they think ahead if that person gets worse? You know there's a lot of variables. And then we have the other thing as well. Disabled people tend to get ripped off more than anybody else. And the work done for them usually is substandard.
Why is this I ask? Because if things were done properly in the first place, we wouldn't be in this situation that we are in at the moment. The major problem that we have in this society is that no one listens to people who are disabled, people who really know what they know, they know how to live and what they need. They don't need people who think they know what they're going through helping, because usually it comes to a head and nobody gets anywhere, and then everybody ends up getting the wrong message.
What I am trying to say is nobody listens to anybody anymore, I think. There are so many well-meaning people out there, but they really do need to listen to what people with disabilities need help with. It is quite unbelievable the amount of disability aids that I see going through our local auction. At stupidity prices really cheap. Why aren't these things returned to our local NHS? Why are my seeing NHS wheelchairs and commodes and walking aids and stuff going through our local auction? Why haven't they been returned to our local councils or NHS? You know, why are we wasting money like this?
And another beef of mine is, I need to make an appointment with an immunologist. And of course, my local health center is closed for the whole of Easter until Tuesday, so I cannot make any contact whatsoever with my doctor. That in itself is obscene in my view. Why should I have to phone 111? When getting in touch with a doctor would be infinitely easier and cheaper. "So it gets to something when you cannot make an appointment. Online? as well" I might add as well. I think it is totally obscene that in this day and age of 24/7 everything that we haven't got doctors that work weekends and holidays, why can't we have hospitals that work 24/7 365 days of the year. I know it's all to do with cost and it is all to do with money, but when it comes to people's health, you would have thought that it would be open for us 24/7, but unfortunately not...
The last ambulance that came here took three-quarters of an hour to get here. And after that major attack, they asked me to go to hospital in the ambulance and I refused, and I'm glad that I did, because my neurologist, well, I'm not going to say any more, but there is so much screwing around at the moment with neurology, it is unbelievable. Trying to get an appointment to speak to a neurologist, I haven't spoken to one in over five years. Trying to get an appointment to do anything these days is virtually impossible.
I actually thought when I moved things would change, but they haven't. In fact, things have got decidedly worse when it comes to the MS Neurology Services. I feel forgotten. I've sent countless emails. And they always seem to be on holiday for some reason. I just really don't get it and I find it really totally frustrating that when you do need help, you cannot get it. What do you do? You phone up the MS nurse and you get told, "Oh, phone one, one, one.we are on holiday" Well, why would I want to phone somebody who isn't a specialist in what's wrong with me? It's like asking Dr. Bonsal from Theme Hospital to perform "Open the heart surgery" that strange and weird. You could not make half of this stuff up, yet I know that it is not the fault of the nurses and the doctors. And I know that things at the moment are slightly iffy. But let's hope things change for the better soon.
Still, getting back to the world of now, I have now produced over 200 songs for my podcast. It's unbelievable. I am having so much fun. I have made some rock anthems, I've done some EDM, I've done some folk music, I've done all sorts of stuff. But I've used all my own lyrics and I've said what the voice of the person is to what backing to what instruments the whole shabang and it really has blown me away. I have also put some of my posts from the blog to music and wow, some of the 10 things to do with are really quite funny and I will put those on the website at some point so people can listen to them. But I've done a few comedy ones and there's a few rude ones as well but nothing too bad.
Still, 42 years today, I met Albertine, happiest day of my life, and she has now put up with me for 42 years. She deserves a medal. Thank you, Albertine, as ever. Love from the Dark one. Warlock Dark.
Still wishing everybody peace, healing, love and light no matter who, what or where you are. Remember, think lucky and you will be lucky.
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.)




