NHS experience

⚠️ 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, a very good afternoon to everybody.sorry but I am a bit down atm Yes, I have been to see the Neurologist, a three-hour round trip which was, to be quite honest with you, a complete waste of time. So I am off to my bed when finished I am so dam tired and stressed out.....

I was prepared with my notes, but was I allowed to speak?

I had everything written out and really he didn't give me a chance to finish off what I was saying. what It was, I don't know what's wrong with you sort of thing. I'm going to have to look it up. Loads and loads of excuses and gaslighting and placating. Ask me, "Oh, that shouldn't happen with this and that shouldn't. Are you sure?" Oh, dear me. Never heard of it. I was sat there in my wheelchair, not knowing what to do. Luckily Albertine was there with me as my speech started to fail me. So, after my 15 minute consultation with the neurologist, I am no further forward and have to wake weeks, because he's got to go and look at what he thinks it could be. I gave him a list of everything that affects me, upsets me the whole nine yards. And you know what? He still couldn't understand what's going on.

severe food intolerance and histamine reactions

I pointed out I cannot eat certain foods or even smell them because of what it does to me. And he sort of looked at me rather strangely. And then said again, I've never heard of that. So, all I got was a neurologist saying to me, "I've never heard of that, and I am a number wiser." Oh, yeah, he scratched the bottom of my foot, made me push things from my arms and everything looked at me eyes, whatnot. But that's beside the point. I went in there to discuss about autonomic dysfunction. It wasn't even discussed. He didn't want to know. It's as though, "Oh, I'm God. I know what's wrong with you. I'm going to look it up and not tell you. They may not have heard about metabolic Food intolerance's , They may not even know about that, so, you know, when I go to see a neurologist and I have all the information at hand, which I have gone through with a medical AI, everything was correct, it's just they, the neurologist did not want to know. It was either his way or no way. So, guess what, that's it, I'm going to be finding another neurologist in another hospital, because this cannot keep going on.

heart attack 5 years ago still not being seen

I was asked when was the last time you saw a heart doctor, oh, that was after my last heart attack five years ago, I've never seen anybody since then. Oh, he said, when was the last time I've seen nobody I explained, I've been left to fucking rot, the health service lost me, and look what's happened. Yes, look what's happened, I'm now so fucked up, so ill with everything, I don't know whether I'm coming or going, and you didn't listen to me and nobody's fucking helping me, so again, I'm stuck, not going forwards, just going steadily steadily backwards. The gas lighting is absolutely shameless in the NHS as far as I'm concerned.

So, what's next for me?

Well, I'm quite angry, but in the cold light of day, I have decided that I'm going to fight this, and I'm not going to give up. I'm not going to give the satisfaction of these people, because I know what is wrong with me, and they don't. You know, these neurologists and they're God-complex, it's quite unbelievable. I have put in so much research on my condition, it's unreal. Even using the latest medical AI, and they all came to the same conclusion with all my symptoms. It's a pity that my neurologist couldn't put my symptoms into his AI and came up with what's wrong with me because it would have been very simple indeed. But again, he didn't listen. No, he didn't.

This has been going on for 10 years.

All of this has been going on for 10 years in various hospitals with various neuro departments. So, do I have any confidence? No, I do not have any confidence at the moment. Over the past years, the 8 years, I have had some horrendous times and I have been ignored, I have been thrown to the side. It is absolutely awful. It is a hell. The last past 10 years have been the biggest living hell I have ever had to live and I wouldn't wish anybody my life. That's how bad it's been. It seems they want to ignore my symptoms. Yes, like they try to ignore my multiple sclerosis for over 20 years, and then made me go through a living hell to get my diagnosis for that. So yes, I feel badly let down by the National Health Service, doctors and everybody concerned over the last past 50 years. It's been hell. And if you've been there yourself, you'll know what it's like being stuck on a conveyor belt, one that goes round in a circle, the one you never get off, because they don't allow you to.

Well, there we go, still, sending anyone and everybody peace-healing love and light, and wishing everybody a fantastic week ahead. Happiness and smiles to everyone everywhere.

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. no AI written content

Good morning fellow humanoids, the sun is shining brightly through the window yet the clouds are looking dark and it looks like it might start raining soon. So today I'm feeling particularly bad, the autonomic dysfunction is going up a few notches it seems every day. So hopefully I hope that I don't get one of those really terrible attacks like I have been getting every now and again. That puts me into hospital.

So, as you know, yesterday I got in contact with my doctor about getting an appointment with an immunologist. But alas, I've got to jump through hoops and hoops. And I have to wait to speak to a doctor for a month before I can even ask to see an immunologist. Now this is unbelievable. As I've been waiting to see a neurologist for over five years, and you would have thought after the last massive attack I had in November, things would have been put into motion. But alas, no, it seems as usual it's all fucked up. The thing is the MS nurse told me that the neurologist said I have to go and see a immunologist Yes, so there we go and Now I find myself in this position of why could you not have told me that in November? So now I have to wait a month to see the doctor. I then have to...

Oh yes. Something else that's just really annoyed me as well. As today I'm feeling particularly unwell and shitty. I sent a letter or email to the MS nurse. Asking for help, but guess what? I have had an email back saying I am on holiday again till Monday, or on leave I suppose. and to get in touch with 1-1-1 if it's urgent. Well, again, I make this point. Why would I want to phone up them when I have a perfectly good MS service that is there to help me? By the time I've explained to 1111 what's wrong with me and what is going on, And then the 1111 service take absolutely hours to get back to you, don't they? Yes, so there we go. So you'll know further forward because they've got to find somebody who is a specialist in MS as well, haven't they? Or autonomic dysfunction. that could take six or seven hours I've been waiting by the telephone, as Debbie Harry would say, and no fucking way.

I am fed up of putting myself through all of this stress. So, do you know what I'm going to do? I'm just going to do absolutely nothing. What is the point of the MS service? Because to be fair, they're not very good, are they? What's the point of the neurology? Not very good, are they? No. So, as I sit here, slowly fading away into nothingness, I question why I even bother going to the doctors at all now, because they have been no help to me whatsoever. I just sit here and I just suffer and get no help, or the only help they can offer is, 'Oh come and see me in a month's time. I don't want to have to pay £55 because I cannot afford it to see a private doctor.' So, yes, I'm just going to have to fucking suffer. Due to the nature of my autonomic dysfunction and all this pollen, I think I'm at the limit of my antihistamine tablets. And guess what? My autonomic dysfunction, histamine levels are going up and up and up. And we know what this means, but no one gives a bloody damn do they?

So as far as I'm concerned, I'm going to have to go and shut myself in the bedroom, turn the light off and basically just lay there because that's all I'm going to be able to do because to be fair with anybody I'm not going to be able to function soon. That's the pure harsh reality of it all. When the sickness and diarrhea starts, that's probably when I'm going to phone for the ambulance. Because then they will be able to see what I actually go through and my attack and then I'm probably going to be an hospital when it goes off. I am half tempted to just not take any anti histamines and let everything go off end up in hospital and do things that way. I am so sorely tempted that I'm not going to do that. My God, things have got that fucking bad in my life now.
Still, that's it for now. Wishing everybody healing and peace

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