Dec 9

 One of the worst CFS days today. CFS. I think also sleep apnoea. I say that. Because when I was sleeping I kept being pulled out of sleep into an appallingly exhausted semi conscious state, like something had kicked me out, and, I couldn't breathe. Pretty sure. Apnoea. On top of everything else.

It is awful. Treacle. Fog. A lead weight sitting on top of you. And behind it all. A deep feeling of unwellness. I cannot relate it to any other period of feeling shit in my life. It has pushed the bar higher. Or lower. Whatever.

My feet are swelling up too. This has been something that has come and gone the last couple of years. I think it's a symptom now of how much struggle my system is enduring.

I absolutely can't keep this up.

I am mostly lucid. But I am aware. I can't keep this level of existence up. I can write this through the fog. In a way. It gives me a distant point to focus on. As sometimes this blog is. It becomes a tiny thread of a lifeline. It injects the tiniest bit of coherence. Lets me leave my body slightly. I can't do it for long. And it's minor. But.

Sometimes there are moments in a day where I can be mostly unbothered by the storm of bullshit. Quietly watch something on the TV. On a better day I can play a game without tanking. On worse days I can't even tolerate sitting there for 5 minutes.

Is it worth it. Is it worth tiny glimmers of quasi stability. Versus long periods of awfulness.

There is something very wrong with me. When it's showing off all its brutal colours like now, it becomes extremely clear how very fucked up something is.

I understand. Why some people with this have committed suicide. Just for CFS the rate is six times the norm. I get it.

Perhaps this is just one of those bad periods. But. The problem is. Even in a "non bad period". I feel like shit. In a bad period. I just want to die.

Perhaps work is a problem here. It is putting a stressor on me that I am failing to meet. And that is causing something of a crisis during a very bad patch. It makes me realise I cannot do it. I think there is something to that. But. Also. Something of a convenience. I am deteriorating.

Couple of things have floated across my mind again. One. Properly starting proceedings for going to Switzerland and euthanasia. I am reasonably sure I would pass the tests at this point. Two. Quitting work altogether. With the probable idea that I am going to be dead within a few years. And I have enough money for that. Everything else. Becomes moot.

I don't know.

Part of me doesn't want to deal with it. Of course.

A big part of me realises I have no choice.

An even bigger part of me is exhausted. And just wants to sleep forever. And go out that way.

Of all the ways I thought I might go out. This was not one of them. But. Nature of the beast somewhat I think. And. I kind of always suspected that. It's the thing you don't see.

I have checked the state of UK euthanasia policy. The current debate which may or may not make it into law is very tight. It only covers people who have six months to live. This means you need a slam dunk terminal diagnosis. This is not where I am. They don't even understand what's going on with me. So they're never going to be able to make that deliberation.

So that's not an option.

I shall sleep on it. And hope it all goes away. Which I know. Just means. At some very dark point. I engage in some messy solution instead.

It is unfortunate I get to suffer this. I don't rage at it being unfair. I am ambivalent about it. It is just odds. A dice roll. Somebody has to go through all the nasty possibilities. I am just one of that number. I wish it wasn't so. But. It's how it works.

Also learned that CPAP has an even higher rate of failure in people with autonomic dysregulation. Basically it hardly is ever tolerable. Because your system is stressed. And the CPAP just tips the balance.

And no surprise. Apnoea massively exacerbates the issue. Because. Instead of rest. You get lots of adrenaline blips, o2 drops, brain stem panic. Permanent state of stress.

Perhaps that's why today feels so awful. I know I had a bad patch of apnoea last sleep. On top of the storm currently going on.

A bad dip in a bad dip.

Regardless.

The worse bits are getting worse. This implies a trend.