Feb 3

 Up relatively early today for the GP. "Early". Midday. But for my fucky hours, this is something. I ended up sleeping a little and then basically being awake from 3am onwards. A mixture of appointment anxiety and not being able to sleep. I hate having scheduled things to go to now. If I have a place I need to be at a certain time I get some pretty bad ADHD anxiety bullshit with it and can't relax until it's done.

Nausea today is so far pretty much non existent. Typical.

So the outcome of the doc today was a mixed bag. He suggested I try getting out more. Uh huh. Ok. Let me explain properly how I've been feeling and exhaustion and CFS because, I suspect you're not getting what the fuck that is. Yes. I agree. Getting out would be good for me. Being able to do that is another matter. Sigh. But this is GPs. I can't super fault him for this. GPs are by definition generalists. And in todays world of information, they are usually out of their depth if you wander even slightly off the beaten track. Anyway. Nausea. He has prescribed me a PPI. Same old schtick as last time. This is what I thought they would do - and kind of wanted back in November. 3 months later, here we are. The plan is to try a PPI for a month - lower stomach acid - see if I improve, if I don't then "do some more tests". As ever with the NHS. Late response. Do the minimum. Wait and see. Although that being said, my asthma care is not like that. Quite the reverse. Uh huh.

I am not sure what he means by "more tests". Other than finally sticking a camera in there. My recent blood tests for all other things came back "generally going in the right direction". But then, to date, my blood tests have rarely shown up shit, except for elevated urea, chronically shit vitamin D and off and on bouts of inflammation activity. However. The NHS does love a good old blood test. Keep on kicking that same tyre and scratching your head. I am beginning to suspect there is a lack of training or capability in how to fucking debug something. Methodical progressive investigation. Coders they would not make. They'd run a single test then throw up their hands. I mean. There are people that do that. And they're called non IT professionals. This is typically what your average user does. Hits a problem. Maybe looks at one thing. And declares it impossible. Or the machines fault. I find the lack of investigative skill showed by your average GP to be abysmal.

I also got my mental meds back on repeat on my prescription. I've been taking them for a while now at full strength, so I wanted to pick up the scrip again. It doesn't super matter - I have probably at least 6 months of mental meds stashed. But, it pays to be careful with them. And with a stash I can self regulate up and down with them as needed. Hazel has absolute dire experiences with her mental meds. They refuse to give her a repeat scrip, it has to be faffed about with every month, and because of the way she is, every other month is a panic of putting shit off for too long and scrabbling around at the last minute. It's an enormous source of anxiety for her. It's dumb as rocks. The NHS should not be doing that. They should give her a buffer of a months supply at least in my humble opinion. Alleviate the stress. Allow for hiccups in supply.

But that would be far too sensible.

In my own case, I have managed to build up a cache of them. So I don't have to go through any of that bullshit. But also in my case I can tolerate smaller doses or being off them entirely in better periods. Which allows me wiggle room in running scrips when I no longer need them.

The stupidity of the system.

I am very tired today. Figures given the lack of sleep and forced break in my sleep schedule. Crucially however it has not made me terribly ill - which is often the case if I even think about messing with my sleep. So. That's a plus.

The doc floated the idea of therapy for the issues I was going through, pitching the whole thing as something to do with mentals. Sigh. They are connected. However. Pay attention. Feeling like shit makes your mood decline. This is a rational response. Also. Therapy. On the NHS. Hilarious. That doesn't exist. I turned him down and explained the realities of my CFS journey.

It has crossed my mind to get therapy if for nothing else to allow me to talk to someone about how hard all this is to deal with. I think it would probably do me some good. But. I would never do that under the NHS. You'd be better off sticking your head in a blender. Also. Been there. Seen that. Done it. Also. Been there with others. Seen that with others. In all cases. Diabolical. They are massively under resourced, over worked, corners are cut, waiting times are hideously long, and your standard of professional you get varies wildly, and often lurks down near the useless end of the scale. In Norfolk, the mental health services have been on "special measures" - ie, particularly shit - for so long, that at this point, it's part of the furniture. If you need that shit. Go private. And if you can't. Then you get to suffer. This is one of Hazel's - justifiable - points of rage, and - far less justifiable - bones of contention with her dad about not funding a private therapist for her.

So. PPI here we go. It's something. It was the minimum I expected in November. It just took us 3 months to get here. I shouldn't be surprised. Like a lot of things, I think at this point, despite being in no way a medical professional at all, I think I'd be doing a rather better job with myself than the actual professionals. I called this particular course of action out 3 months ago. I do have a brain. This isn't rocket science. 

Eh well.

The slow grind of fucked up bureaucracy continues.

To be fair to the doc today he is quite nice and helpful albeit treats me like I'm 5 years old and an idiot. I don't super mind that. Sometimes being treated like an idiot is kind of helpful. But at other times it's just a waste of time. Yes I know that that med is. You're giving me a PPI. I know what they do. How they work. Why you give them. I can tell you where they metabolise. I can also tell you about the increasing concerns being raised about their side effects, not least of which is a connection with dementia in long term use, and a bunch of other serious issues. ( This does not surprise me ).

But I get it.

They probably see an endless stream of idiots through the door.