Dec 23

 I am awake. With a tiny slither of energy. So. Better than previous days. This bodes slightly fortuitous for a day in which I have to get some shit together and travel south. Hopefully the car holds up. Otherwise that's going to be a painful super energy burning ride.

I don't quite have the energy to move around like a normal person and get myself ready however. I have enough energy to sit up, not be crashed out asleep, and nurse a cup of tea. My first tea in... weeks. We shall see how the old dysautonomia CFS nausea monster feels about a tea.

I am going to let myself very very slowly come up to temperature. And hopefully. As the hours roll by I will get a little more stability to get up, potter around, pack a bag, and pour myself into a car. 

From high reflection. It is interesting. And awful. How life changes when you can no longer take ordinary shit for granted. Like. Packing a bag. Part of me is absolutely disgusted by it all. The shrink would call this my brutal inner critic. It has no time for this bullshit. No time for my lolly gagging "lazy" "stupid" self. It is. If I half think about it. Exactly the kind of thing my parents would say when I was a kid. It is. With a sense of some deep sadness there. Probably just the scars leftover from then. The metaphysical welts across my back. Stupid, useless Johnny, do better, stop play acting, get up, do something. Hum ho. I know. I do know. This is a horrible bullshit take. And I do know just to mostly ignore that inner critic. But. It's still there. And it still shouts and gets angry. It's. Another inner battle to fight. On top of all the others. Something that people don't see. Don't know.

I do try to be kind to myself. Give myself a break. Ease into it. Do your best to fit the pattern. Do what you can when you can. It's still frustrating. Inner critic or no.

And yeah. It does make life suddenly fall into sharp relief with regard to complacencies. I know some people have it worse. I am not comparing sufferings here. I am not doing that absolutely stupid thing of dismissing myself because others have it worse. I know not to do that. But I do think about others. And can only imagine how on earth they cope with what they have. I suspect. There must be for a lot of it. Upsides. Periods where things are ignoreable. I can't imagine what living in a permanent state of non capability must be. But then again. I don't have to imagine too hard. I live that fucking reality for long stretches of time. For me. It's. Not really copeable with. I do. Cope with it. But super grudgingly. With one hand on a knife and a constant refrain that this time, I'm going to kill myself. And that battle - yet another battle - is a hard one. With absolutely no guarantees. I know it. I feel it. The mathematician in me tells me that over time, the odds are bad that you keep winning. Eventually you lose that battle. And you only have to lose once. I know these things. I just have to do the best I can with what I have. And. Grimly trudge on.

Anyway.

Slow and gentle is the order of the day.

If and when I get down south, one of my work colleagues really wants to meet up out of work and just chit chat if I have the time. Which is nice. And sweet. I often take time with them to listen to how they're doing, health wise, everything wise. Just. Pause. And care. Human. I think. I also think. Some people don't get a lot of this. It is a shame. A recurring flaw of our modern world. Listening and understanding goes a long way. But these days. I am hard pressed to even do that. The nausea, if nothing else, makes it hard to think about anything else. Nausea is quite selfish. It just wants to go lie down. And it can't think about anything else.

If I can gather some kind of fucking mental capacity together today before 3am. I need to put a few things on my phone. Netflix. Disney. Blah. So I can stream things wherever I am. I will also - in theory - get to test out my lovely mini projector as well. It means. In a perfect setup. I can find a hole anywhere and stick a large TV up out of nowhere. And curl up and drift away with the drone of nonsense in the background.

I wish.

I could sleep for a year.

Really.

It's just a wish to sleep forever. When you get down to it.

Ho hum.

As I noodled around in the small hours this morning. I felt ill. The nausea was on the very down low. But despite that. I could feel it. There is always this sense of ... illness... in my core. It sits where my stomach and heart and bottom of my lungs are. It feels. Heavy. And. "Grubby". A miasma. Of unwell. It's hard to explain it. It's a permanently on source of low level unwellness. Like a miniature flu. At times it wakes up and radiates out. Like being sick from too much heat. It rolls over you.

I don't know. Perhaps this is the bottom line heartbeat of an autonomic system in disarray. It is the permanent buzz of the disharmony. The orchestra permanently out of time and out of key which other.

Or maybe I just have an alien growing in me. We shall call it. Bob. 

Also. This little over simplified info graphic. Fuck me if I don't tick almost *all* of these goddamn boxes. Perhaps. Like all things. It becomes obvious when you have the answer. One of the killer things here for me, is that it ropes together a lot of my "weird" symptoms that I have always been clueless about how they come together. The eyes. God the eyes. And the dizzies. And. A real quiet one here. YES. The fucking *swallowing*. There are weird moments. Where. I can't swallow ? And then. You get a small anxiety panic bump. WTF is going on. Why is swallowing suddenly a fucking major cognitive process ?? And I have to concentrate hard, calm myself and... swallow. It's weird. And something I have entirely ignored. And not reported. And just marked on my long list of "weird bullshit we don't talk about". But. Here it is. On the dysautonomia sheet. Fuck sakes. From left to right, top to bottom. Hell yes. Hell yes. Yes. Yes. Yes. Sometimes yes. Yes. Only when I was really ill, but that was definitely weird and a thing. Yes. Yes. No. Yes. So. 10 out of 12 commonly. 11 out of 12 all told. Do I win a prize or something ? And added bonus not on the chart "Nausea is a very common symptom of dysautonomia". Excellent.