Dec 24

 Right on the edge of Christmas day.

My brother and sister in law have departed for their Xmas few days away as they often do this time of year. I am in the house on my own.

Today has been difficult. I got up this morning to make sure I caught my brother before he left. But I was zonked out. I did my best. Slowly. Saw them off. And then went back to bed.

And the exhaustion has gnawed on me. I woke up late afternoon. Not good. My brother had said my nephew had been asking if I had arrived yet. So. I wanted to go to my sisters and show my face and say hi and all that kind of thing. Which I did. At a hell of a cost. It's good when I don't have to put on any masks - in a house on my own. I don't have to expend energy stifling the screeches and moans and horribleness.

Dragged myself out. Had a nice chat for few hours.

Then immediately went back to bed.

Still exhausted.

This blog. I have realised more strongly today again. Is. Something of a safe space for me. I can say things into the void. And. I don't have to justify myself. I don't hit social friction. Of someone telling me I can't think like that. I can't do that. Or wanting me to explain something. Or working through something of theirs. It is a space. Where I can just be. Me. Without explanation unless I want to do that. Without justification unless I want to do that. It is friction free. And so it is safe. A place I can put my words. Without anyone telling me that I am wrong. Or should just cheer up.

It is. I can now see. Why there is some small therapeutic aspect to it. It is not a million miles away from what the shrink does with me in therapy. I can be me there. I can be me here.

All of which comes up because. I have some difficult things to say. And this. Is my safe space. 

So.

Difficult. Emotionally. There is something complicated here. I am ostensibly with my family - albeit my brother has left for a few days. But I am in a real sense with them. But also. I have no one watching me, as in, I can slump hard without needing to put a social face on it. And. It causes some revelations to pop out. Not good ones.

Late this evening. I got up. And watched a little TV. Excruciating. I could barely sit and watch it. I would count the minutes to the next ad break. Shift positions. Unable to get any comfort. An itch you cannot scratch. Terrible no matter how you sit. Uncomfortable just existing. And I really enjoyed what I watched. But it was still hard.

And it made me realise. I am very fucked. I am so much worse than I was the last time I was here. And. That it doesn't really matter where I am. If anything. Being close to my family makes it worse. Not because I don't get on with them. But because. I don't want to burden them. I don't want them to have to deal with me. And. There is a cost to me masking up as well. It is not a realisation born out of hostility or callousness or un appreciation. It is. Something else. Something born out of care. Of not spilling out. Of an awful terminal realisation.

And today. Has not been my worst day. Not even close. And yet. It's so thin. It's beneath the line of bearability.

I think in the end. On thinking about it. There is something in there akin to going on holiday to somewhere you always used to go to. Water skiiing. Activities. And where before you could. You now can't. The contrast is sharp. It causes a series of very sad realisations. About how far you have come. And what the realities are. And instead of enjoying your water skiiing. You instead lament you can no longer do that.

Except. It's not about water skiiing. It's just. Not being in a horrible state. It's just. Remembering what it was to be a normal human.

And so.

There is a sad cost here. It has made me realise a number of things more actutely than anything else has.

I. Think. This is maybe my last visit South. Unless I improve. And who knows. This might just be a prolonged dip. But. I don't think so. I think the tectonic plates of progression are there. But anyway. I think this is the last time I travel and stay somewhere. I think. This is very much a final bit of the path.

It's clear I have struggled to gauge where an end comes. I am always in shock that I haven't yet kicked the bucket. I am perpetually surprised at just how much of a beating I can take and still keep breathing. But. I think. I cannot see the end date. But what I can see. Is the path changing to its final form. I can tell that I am on the final stages. The when. I don't know.

You can never predict the whims of fate. But. Trends. Trends over time. You can. Perhaps the path turns and climbs out of the valley. I suspect not.

There is quite a bit of sadness in there for me. As much as I am always ready to descend into oblivion at the first opportunity. I don't know. This realisation. Perhaps because I can see the lights of different paths of different people. Living their lives. I am sad. That mine has dwindled out.

It is. What it is. Which is not to lessen any emotional weight. Not to dismiss it. Nothing of the sort. It is. Heavy. It is. Accepting of fate.

And so.

I find myself in a grim place as the clock moves onto Christmas day. I can see I am not fit for anything. It is a supreme effort just to keep breathing. Shocking. It isn't about a rut I have fallen into. It isn't about what I am eating. It isn't about not getting out. The place I am living in. It's just literally. Me and my health. And no matter what surrounding variables you change. The outcome. Is the same.

Heavy. And grim. And sobering. And this isn't something I can escape. It's not something I can shrug off and say hey ho. Cheer up. No worries. Tomorrow is another day. This is very much the reality I am in. I cannot hand wave it away. I cannot ignore it. I cannot do anything about it. I have to sit. And watch it slowly squeeze the last bits of me out of me. Until I stop.

Brutal.

The CFS people say. Don't freak out. Don't freak out when you bottom out. When you have a relapse.

So perhaps the days will change. And I will not be quite as far down the slump. But. I don't think so.

As ever.

One more day.

Watch the scenery slowly pass by. Endure the waves.

Eventually it will stop. The one guarantee everyone has.

This evening. Very serendipitous. I caught a documentary on Rocky Horror. This was what I was watching as I struggled to keep breathing. It was very interesting. And compelling. And moving. Rocky Horror has a special place in my heart. And all the weird people associated with it. I'm not really of that tribe. But I super appreciate them being there. And I find there is something .. wonderful... about seeing what people get out of it. And low key I am always.. impressed is the wrong word... but.. I don't know what the right word would be. I always come away feeling that Richard O'Brien is a human being of worthy consideration. Thoughtful, mindful, careful, honest, humble. I find him to be a rare honest strange bird that probably should have got a good deal more attention than he ended up having. But then again. In someways. That is not who he is.

In any case. I am glad I randomly found the documentary. On old school TV. Playing at that particular time. On that particular channel.

Somehow. It also just provided a faint underscore to everything else I was feeling. It felt like. I don't know. A circle. An ending. A couple of bookends, from when I first encountered Rocky Horror as a kid, to now, as I perceive it - rightly or wrongly - as my last gasps.

It was good. Anyway. Done by his son. Who clearly he has a very good relationship with. 

Tomorrow will be another day.

Perhaps I will have a little energy again today. And just breathing wont be as hard so that I can have a little bandwidth above just trying to make it from one second to the next.

But that siren call.

Sits there singing to me.

Not worth it buddy. You are not hopelessly depressed. You see things clearly. It isn't worth it. Finish this. Find a spot. Curl up. And fade out. Your story is done.

Hum ho. 

At the bottom of the well. And you look up. And only see a circle of sky. And the deeper the well gets. The more the hint of blue disappears. Everyone else under the sky. But you have faded out. I can see. This is what happens with people when they fade in hospital. They become unresponsive to their environment. All focus turned somewhat inwards. Or drifting somewhere internally. No capacity left to register whats going on. They too are at the bottom of that well.

I get it.

Where I am. Is not the worst way to go.

It is also. Far from the best way to go.

And there is a strange thing. As I get closer to the edge. Everything sharpens into focus. I can see. Further. And clearer. I can see all the patterns. And all the tragedies. It is. Odd. Perhaps. It is some quirk. The upping of capability. In a futile attempt to help. I know - I have been told - that aspects of your physiology does this. The turning up of sensitivities when things are critical. It is I have been told one of the reasons why the tinnitus can squeal harder when I am worse. It is my system desperately trying to increase the resolution of all the input signals. To find the attacker. The abuser. And deal with it. And everything for that period. Becomes sharper. And clearer.

It is like some weird inverse relationship to your living state. The closer to death I nudge. The sharper my eyesight gets.

Not. That it helps. Quite the reverse. I see the tapestry of tragedies played out. And I feel so many of them very keenly. It too. Ends up being another horrible burden.

Eh well.

Well done Johnny.

Gold star. 

Stupid hairless ape.