Dec 19

 Tired. But again doing a tiny bit better than the day before. Each day one after another I get a teeny tiny bit better. It's not saying much. I am still, on the whole, a shitshow. But I am nudging away from cataclysmic will I make it to tomorrow shitshow. My ass, conspicuously, is also quiet. Better. The correlation / causation holds. You might, perhaps, be inclined to wonder whether the post surgery recovery actually hit me quite hard, and that a lot of this, is perhaps a very depressed body dealing with a pretty invasive slice and dice in your ass. Like getting stabbed in the ass. It makes me kinda wonder how that works, at what level does the cumulative strain result in your body waving a white flag and just keeling over. The whole, stab, shock, stress kind of response. Where people die from shock. Not blood loss. Not major organ failure. Shock. What is that ? Anywho. Take it with a pinch of salt. Could be nothing to do with surgery recovery. Could just be coincidental.

My recovery times these days are painfully slow. And never get very far. Part of this is getting older for sure. You stop bouncing somewhere in your 30's and instead start breaking. But also a large part of it is the shit that is dogging me.

Docs.

So today I went to see the doc. I wasn't entirely sure how this would go, the possibilities were varied. From shit. To great. So, I went with an open mind and hoping for the best, but expecting the worst.

As it turned out the doc was great. Which. Seems to be the recurrent experience going private. I gave him the reason I had come, sleep, but also gave him the context around it. All of it. Or most of it. What I could remember. He wrote it all down. And then he spoke to me.. like it was me talking to me. Everything he said made sense. Was stuff I had already got to myself. He believed all my issues were connected. That something had clearly gone very wrong with me, but, not so much yet as to kill me - quite yet. If everything goes wrong at once he said, you're dead. But. If things are going wrong. Like bricks missing in a wall. Leaks. Problems. And then that has knock on effects. And I. Had missing bricks. He talked about the unknowns in post viral syndrome. How things like CFS have been treated like a pandoras box - it's there, it happens, but no one is touching it. He also talked about the limitations of medicine. How much we didn't know. Only beginning to scratch the surface of it, and sometimes you have to accept that no matter what tests you get, in the end, you have to accept it is what it is - you've surpassed current knowledge. Into the land of dragons be here on the map.

Yes.

All of this I understand. Have come to terms with.

He went onto say how the NHS was terrible at treating problems like mine. That often it required looking at the holistic whole. Digging further into tests. Looking for things that were not on the simple check list. He clarified that it wasn't just the NHS. Medicine on the whole tended to do this. Tended to narrowly examine a single thing and discard the rest. He gave examples. He was passionate about it. How fascinating it all was, but also, how complex, and how many unknowns there were.

All good. I told him I understood the limitations. Understood how post virals worked. How under researched they were. We were, I said to him, on the same page here.

But this alone. This adult conversation about where you are was in itself a revelation. A breath of fresh air. Something you do not get with the NHS. A frank discussion.

Perhaps it's the time limits. Private. The time limits are loose. You have time to tell a story. You have time to talk. To wander into the ifs buts and maybes. Under the time strangled NHS there is no time.

It was a relief. Just talking to him. Hearing him say that doctors would often default to telling people it was in their head just because they didn't understand a thing. Just because we don't understand a thing, doesn't mean it doesn't exist he said. And how frustrating and awful that can be for a patient.

Indeed.

Anywho.

The upshot of all this is.

We're going to line up a whole bunch of blood tests. Each one getting more esoteric than the last. Testing for stuff that I haven't been tested for before. Looking for the increasingly unusual problems.

Also. I'm getting referred to a "respiratory specialist" for possible sleep apnea.

Off the cuff the doctor suspected that my problems were neurological. Hormonal. Endocrine. Vagus nerve. The whole sympathetic nervous system was off. That possibly a virus had got into my brainstem. And fucked things up. And that I also likely had sleep apnea. But that everything was related. A discordant mess.

Finding it may be impossible. Beyond the current scope of knowledge. Fixing it may be impossible. Beyond the reach of treatments. But. In the process. We can knock down things which it isn't. And along the way possibly find things we can fix. Maybe fix entirely. But until we go looking, we don't know.

So, it seems, we're off on a journey. It maybe the shortest journey ever - a hopeful first step before falling flat on your face. Or it might continue to lead on. I personally have other avenues to attack after this if the docs come up with a blank. I am a mean methodical problem solver myself. And I have things on my bug list that I want checked.

Anywho. Positive.

And when he started talking in the exact terms I have been pondering over. Talking like an adult. The science. What you can do and can't do. How you can get unfairly treated. The relief again was so great I found my eyes pricking with tears. Just to have someone say, I get it. I understand. Let's see if we can do something. As opposed to just getting ignored. Brushed aside.

I am tired today. The last few days I have been more active. Trying to keep a little going. The effort of going to the doc today on top of that has wiped me out. I fell asleep late in the evening and woke up 4 hours later feeling utterly awful. Everything hurt. Every muscle screaming. And I felt ill in a way I couldn't put a finger on. Paying the price. Shit's fucky yo. This is the very real cost of heaving myself out and temporarily stable enough to have a high level conversation with a doc. Energy. Effort. And it's limited. Choose your battles very wisely.

In other news.

So I've squared up some arrangements to stay at my brothers for a few days. Confirmed dinner out and about. But. With the caveat to all I have to be back by the 27th because Hazel is off to the US on that day. Not ideal. Not great. But ok - it means I wont get to see my brother at all. We will pass like ships in the night. On shoring up these plans I checked with Hazel exactly when her flight to the US was - because this would mean whether I could leave on the 27th, or have to come home on the 26th ready for the 27th. Leaving on the 26th would be pretty crappy. I would only end up with Xmas day itself as a full day down there. Meh.

She confirmed the flight was early hours 28th, so, 27th return was fine.

Ok. Cool.

And then.

Say if it's crazy she said. Is it ok if I come with you to your brothers. Spend some time with you and Athena ?

Mmmm ok. Sure. But. Let me check with my brother that's ok. My brother was good about it. Didn't know Hazel. Didn't know to trust her. But left it as my call. He trusted my judgement. A big deal. Thank you.

Hazel and Poppy coming down with me complicates things a bunch. In a perfect world, super not ideal. But eh. I am guessing Hazel feels particularly vulnerable at the moment. And also perhaps doesn't want to go home. Which I get. And to be honest I did say if she was going to be on her own, I would stay at home instead and cancel going down South. But. Plans had been made. And. I think it will be good for me. So. Here we are.

Hazel has said she doesn't want an invite for dinner or anything - which as mean as it is, makes life easier. Having to deal with Poppy who can be variable with other dogs *and* last minute vegetarian prep for Xmas dinner is a big ask for anyone who has invited me to dinner. It very much starts to creep into taking the piss. I am kinda used to it myself, and try and roll with as many of these as I can with Hazel, but, I don't expect anyone else to also have to bend that much.

So. I am not entirely sure how this all works out now.

I have a horrible suspicion that it's going to be a clusterfuck because she's not being entirely straight with me. I think she might be hiding some requests she's going to make. It occurs to me that at the moment, she has no way to get to Heathrow. Her dad was going to drop her off. That's now not happening. I have not even thought of it until now - I just assume she will make her own provisions. But. Eh. She's going to be with me right up until the last moment. It's not going to super surprise me if she springs a request to take her all the way to Heathrow. Not sure what my response will be to that. Trying to do that and take care of two mutts and having had a drive back from my brothers and my health being as it is. It is. A piss take. It is however, a very not exactly unknown kind of piss take that Hazel at her worst can get up to. My gut instinct if she does ask is, to be honest, to say no. A rarity for me. But. It's just too much. And she has had time to sort her shit out in the meantime - even though I know that's hard for her.

I hope for the best and that she has sorted everything out schedule wise. I fear she absolutely has not. I am not sure she's thinking too clearly period. And she also even at the best of times, can be very shit with scheduling of stuff. I think the fallout with her dad and step mom has badly shaken her. Not least of which because it has destroyed all her plans and upended one of the few better relationships she has left in her life. But also, I suspect, because even she can start to see a pattern here, where people continually react badly to her, and end up calling her some variant of a monster. I've done it myself. Called her a monster ( when she was indeed being monstrous ). At some point, even in the most defiant of stances, you have to start to wonder if the problem is indeed you as everyone is telling you the same thing. I have tentatively discussed this with her before. The borderline monster lurking within. And what might be good strategies for blunting it. Working around it. Basically. How to live with it better.

In any case. I have started to factor into my plans her tagging along. I need to take some foodstuffs with me she can eat. Because she isn't going to have shit. I could probably do with cooking dinner for her down at my brothers ( it's unlikely she would do so herself ). My sister in law also has a ninja, so, I think if I take all the bits I need to make, say, vegetarian bolognaise, that will sort her out for the couple of days we are there. The rest. Can probably be snacks. Chocolate. Crisps. Some bread. Cheese. Croissants if you're fancy.

No lie.

It's a pain in the ass. I could do with someone looking after me. But here we are.

And you have to do your best for others. And that's fine. It's cool, it's ok, and we will sort it out. And see if we can make it an adventure and fun.

Why is my life like this.

Can't I just have someone look after me and them be the adult in the room ? :p

No ?

Well. Shit.

This game sucks.

C'mon man. I'd even settle for a tag team. You do a week. I do a week. Or something. No ?

Sigh.