NHS frustration

⚠️ 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

Well, at the time of writing this, it's Wednesday evening ( its Tuesday lol ), and it's quite a pleasant evening. So a very pleasant evening, morning, afternoon, wherever, or whoever you are in the world. Hello fellow humanoids. Well, it's been quite a week for me, I can tell you that. Yes, it's already started. My new medical dramas are about to start coming to fruition. So, as you know, I've been waiting for a neurologist's appointment, an urgent neurologist's appointment since November. That still has not happened. So, I phoned up my MS nurse. Well, I tell a slight lie, I dropped her an email and she made an appointment to phone me. And she informed me that I need to see an immunologist. And I said, "Well, why couldn't you tell me that?" months ago.

So, I'm not angry, I'm not pissed off, I'm not really that fed up. I'm just a bit miffed, to be honest with you, because I've had to use AI to manage my multiple sclerosis and my autonomic dysfunction episodes rather than my neurologist who I can never speak to, and my MS nurse when she's not on leave, sometimes. So yes, I'm in a worse situation than I was before, and on changing hospitals, that is now all on hold. It seems I am staying with my old neurologist who does not like me, who does not get along with me, and it looks like I'm going to get railroaded again. But I do not think I am going to put up with this, so I'm going to be fighting this tooth and nail, because to be honest with you, I'm getting rather fed up of all the bollocks that I'm having to put up with and to go through, just to go and see an immunologist to get my autonomic dysfunction sorted out, which it has taken them how many years to try and sort out. They've had a good, what, 10, 15 years of sticking tubes up and down my nose, going and seeing specialists and God knows what. I find out through AI what's giving me the trouble. Yes people, AI told me what the problem was, not a doctor, not a specialist, but they also agree now with what the AI is saying because of my symptoms. If only they would fucking listen to me. Why does nobody ever fucking listen? It makes me bloody angry. I am sorry for my swearing, but I feel really strongly about this.

So, you've got multiple sclerosis and then you have all the other bits and pieces with the MS which they really don't tell you about. You're supposed to go to a group or you're supposed to go on Google and Google it. They don't sit down with you and really explain to you the living hell that you're going to be going through for the next lot of years. It don't explain to you that the condition causes other conditions to get worse and can cause conditions you would have been dormant in your body to rise up and bite you on the arse. It's like I was okay with the MS but to have severe or autonomic dysfunction as well is mind blowing. You know, they never listened to me but I shouted loud enough and they listened. But now I'm having to shout even louder to try and see an immunologist to try and get some help. Every day is a living hell for me. Every night is a living hell for me. These people do not know what I am going through.

That is why I write this blog because I want to show that I'm not the only person that is going through this living hell. There's thousands of us with chronic illnesses out there who are suffering, who are unheard, whose voices are not heard. We are pushed to the back of the queue. We are not listened to. It really is a very sad situation in this society when people do not care for the sick, disabled and elderly in their society. I think that is a damning thing about the state of our society and the world we live in. The more I look at it, the more I see money and greed and power. That's all people are interested in. The empathy seems to have gone. It's just greedy pigs at all the troughs as usual. Well, I'm going to have to say allegedly because it probably, well, I don't know, to you. Some rambling words and thoughts going on my mind which I'm not prepared to say. lol

So yes, I got in contact with the medical center today, Albertine sent an email for me to get them to get me an appointment with the immunologist to see if that would help things move along, according to the MS nurse, it will. So I received a phone call saying, "Oh, you've got to come into the surgery this morning for triage." And I said, "Well, it's autonomic dysfunction. Why have I got to come in? I just need to see an immunologist." And I really can't work out why I've got to go and see a doctor. When I know what's wrong with me, they know what's wrong with me. Yet I've got to go through this weird system. It's already been over four months. You would have thought I would have been seen by an immunologist or even a neuro by now. But I haven't. So it just goes to show that I'm 66, so I'm retired. That means I'm old. That's box one. I'm sick. That's box two. Oh, dear. Yeah. Don't listen to me. I'm old, sick and disabled. I'll go to the back of the queue and just sort of curl up and roll a little ball and just stay there and rot.

But unfortunately, I'm not going to crawl into a little ball and rot. I am going balls to the wall. No, I'm just taking it slow and I'm taking it steady and I'm taking my time. And if I get seen, I get seen. And when I do get seen, I'll be able to sit there while they treat me like an idiot, as they always do. You know, when you're in a wheelchair and you've got somebody with you, they always talk to the person and not the person in the wheelchair, don't they? So yeah, I have a list of questions. I have quite a lot of evidence and yes, I will be going armed with all the evidence and yes, they cannot easily get away with all of this rubbish because in the end, they've got to see me. I mean, why can't they just take five minutes out of their day? You know, simple really, isn't it? I think in this day and age of everything being 24/7, doctors and dentists should be 24/7 as well, 365 days a year, because that's the society we have turned into. Still, I shall go and look out of the window and I will be listening to some music. And, well, just think myself lucky that My tinnitus is on low volume today.

So, an update from the doctor situation. "Would you believe I had a phone call from a doctor's surgery this morning? And they said to me, 'Can you come in today?' to come in for a nurse for triage?' I said, 'No, I am too ill. I cannot get there.' 'Oh,' she replied. The next thing, 'Oh, I shall get you an appointment,' I thought. 'Oh great, I might get to see somebody.' 'Uh, like a phone call or something.' 'No, I now have to wait a month to see a doctor.' The only reason I got in touch with the doctors was for them to arrange an appointment for me to see an immunologist. And I now have been waiting for months. And now it looks like I am going to be having to wait more time due to people not listening and acting correctly. So yes, I'm only one more autonomic dysfunction attack away probably from something very nasty and fatal happening to me. You just cannot make this stuff up. So now I'm going to have to email the MS nurse to try and get her to get her ass into gear and also to speak to the neurologist to try and get him to do something as well because to be honest with you I don't think I can put up much longer with what is going on with me.

So yeah, as you've guessed, it's Wednesday morning that I'm doing this and I did the earlier part of this blog on Tuesday evening, I think it was. I can't remember. I haven't been that well. So please remember, have fun out there and be safe.

Still, anyway, that's enough of my ranting and moaning today. Still, I'd wish you all a very good week ahead and send you peace and healing, and hope that things go well for you all. Whomever or whatever you are, wherever, or whomever you are.

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.

please remember I suffer with severe cognitive dysfunction this may be a confusing read. non AI content

well fellow humanoids So, as ever, the nhs have screwed up yet again. I asked months ago to be transferred from one hospital to another because the neurology department where I'm at at the moment is not the best and I wanted to go to the better neurology department. Well, I've been waiting for months for an appointment. I received two letters today and apparently they've never even heard of me at that neurology department and they said even if they had it was so long ago we've destroyed all his records.

So you can guess that I'm a bit pissed off with everything. With everything I've been going through over the past load of months. And I thought I was actually going to get somewhere. But again, I have been proven wrong. I have to suffer just because somebody can't do their job properly.

They must think that I love having autonomic dysfunction and progressive multiple sclerosis, and have a B bundle block heart issue and a weakened heart wall and everything else that's going on with me. Because as far as I'm concerned, I can't see anybody who really gives a fuck about me, apart from my own family.

They must think that I like being in pain 24/7, they must think that I like not being able to eat anything due to my condition. And then if I eat the wrong food, I end up critically ill sometimes. Really, they don't give a damn. And nobody even listens. You're patted on the head and placated.

So now I'm completely stressed out due to somebody who cannot do their job properly. I feel absolutely sick to the stomach of all the gaslighting and BS that I have had to put up over these past 40 odd 50 odd years. It's been un bloody, believable what I've had to go through and how badly I've been treated. It seems the louder you shout, the further back in the queue you go. It just seems like nobody gives a damn anymore.

So, it's Tuesday and I am completely stressed out. My neck is no better. It is absolutely unbelievable. I had no sleep at all last night and my autoionic dysfunction has been on the edge as well. So yeah, I could have done with some better news but there we go.

Sending peace, healing, love and light to whomever or whatever you are. Sentience is a thing of wonder.

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.

Still, the holidays are over. And yes, did I have a good time? Not really. I do miss the Christmases of many, many, many, many years ago though. The big family Christmases of maybe 20, 30 years ago. So I'm hoping everybody, no matter whom, had a fantastic holiday season.

Personally, the holiday season really sucked for me. Yes, it really did. To be fair, the weather really did for me more than anything else. It seems that the south-west went uber, uber-frosty. And yes, it had consequences that are going to be felt well into the new year. Oh, the joys. Rusty 1 the van. Oh, turn the key and the battery is as dead as a dodo. And I have to go to the wheelchair services to sort my new wheelchair out in the new year. So here's hoping that I can get the AA over to come and start the van up. Here's hoping I don't need a new battery, otherwise that's going to be a real pain in the bum. That's what really annoys me. It's everything coming to a halt. It seems when the holidays arrive, everything stops and there we go. But that's just me I suppose.

Not to mention my phone driving me mad with all the text messages from the chemist, telling me that I have to be there to pick my prescription up. And yeah, I get busy people. Yeah, when you receive like three text messages and you can't go to get them because it's impossible. Yeah, it makes you wonder, doesn't it? And then I have to go and see the machine of death and put my numbers in and see what comes out. Will I break the machine? Will the machine break me? What will happen? Will the people be really happy with me? Will the chemist give me one of those knowing looks of oh here comes the man with the three wheeled trolley of death. And he's come to break my dispensary machine. Yeah, well these electrical things are not built the best, but they're a very good idea in practice. And should I say in theory they're a very good idea but in practice probably not the best.

So now it's getting in touch with the AA, get the battery sorted, probably a new battery. Oh, the joys of that. And then there's having to travel, what is it, 60 miles to go to the wheelchair services? I can't do it locally. No, it's a bit daft. But there we go, such is life. And if it's snowing, then I won't be able to go. Oh, dear. Do you know it's going to be snowing and you know the weather's going to be bad because I got a January appointment. It's never good down here in the snow. So yeah, I could be waiting even longer for my new wheelchair. Apparently it goes up and down side to side and there's all sorts of weird stuff. So I am looking forward to getting that. I bet it actually get out the house and go more places, see more people. It might be a go, oh yeah. I mean, how unreal is that? Actually go out. Actually go somewhere. Actually see people. But then again, do I really want to go out? Everybody seems to have the colds, flu, diarrhea, all these bugs and illnesses going around everywhere.

Now I'm retired. I may as well just say, hey, just don't bother ever going out again. And then I'll feel, well, just as shitty with the MS and the dysfunction. But hey, now at least I won't have the flu. But then again, people who deliver me food and stuff. Yeah, so it's all very well, isn't it? But self isolation can only go so far really. And then the end, you can probably self isolate the point where you never ever go outside again. And you never want to speak to anyone again. So then it inpeeds on your mental health. So yeah, some people seem to think being disabled is a very easy life. I can tell you it's not. Even doing this is making my head hurt the point that I want to stop but I'm not. That's the problem with chronic illness. You push and push and push until you can't push anymore.

So the bane of my life at the moment seems to be batteries. The joys of batteries and battery discharges, batteries exploding, batteries that don't do what they say on the label. Honestly, I think I've spent most of my money on replacement batteries over the past load of years. It's quite incredible. And it's always just outside the guarantee as well. So you're thinking, "Ah, yes." No, it seems all the electrical stuff doesn't last very long these days. I can remember having a radio solid state when I was only a teenager that I still probably had up until a few years ago. That's how long stuff used to last 40, 50 years. These days things can't last five minutes. It's a bit weird that. Seems things got better but don't last as long. That is very strange.

January is coming and let's hope the weather warms a little. The physiotherapist is coming over to see me in January for a look over I believe. So that should be interesting. Let's see what new exercises they can give me to help me. I'm sure they're very helpful. The person sounded very helpful and very knowledgeable on the phone and I'm looking forward to this appointment. but still waiting to hear from the neurology department as I want to get into this dysfunction business with them so they can help me out more. It really is a silly thing sometimes. I should have moved hospitals years ago, but I didn't and now I'm regretting that I didn't. So yeah, yes, that's down to me unfortunately. I am fed up with all these symptoms down the left hand side of my body, like my body has had a stroke. Yes, this dysfunction or auto dysfunction or however they say it or spell it is causing me hell. Because I cannot have any histamine in anything I eat, otherwise it sends me into this really weird place. But I am having to try and deal with it, but it is causing me heart issues as well. So I am waiting to hear back from a cardiology thing as I had a heart monitor for a week as well. Yes, I know what I think is wrong with me and I am just waiting back to hear that it is not as bad as it could be, but it is still bad if you know what I mean....

So to be honest, I've spent the whole of these last past few days trying to relax and de-stress. It's been very cold here. I've been trying to stay warm. I've been really getting into trying to get my diet sorted out. Now I know what's really going on. And that's starting to help. Believe me, change of diet is everything. It done half-help, I'll tell you. MS and this autumn Munich dysfunction. Oh my word. Food really, really causes hell with it all.

Yeah, well, now my spelling. I'm using voice to text to do this as my fingers are completely numb and I cannot feel anything with my hands at the moment. My voice is slightly croaky and some of my words are, well, not what they seem. It's just too funny. But I refuse to put my words through AI as it sanitizes and changes my words too much. So you'll probably see the complete change in my writing style. Yeah. But there we go. I was told use your own words. Don't let the AI change your words. Then your real real words are true, genuine, not sort of AI made up stuff.

I have not forgotten about doing my spoken blog either and that is now being sorted out. We have a Spotify account and we are just getting everything ready and I have to get the confidence and I have to get my head together to do it as well. So that should be 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