Aug 3

 Things have got worse. Just everything a half turn of the screw worse. Noticeably.

Twitches are up. Loss of feeling is up. Pains are up. Tinnitus is way up. And crept into both ears.

The twitches are now a very regular thing. Typically when I am in a more relaxed state or asleep. They follow the same pattern. An involuntary spasm. Sometimes minor. Sometimes major. They can kind of occur anywhere, but legs and arms are common. Some sudden jerk of my neck or teeth or back during sleep also happens, wakes me up. I woke up at some point during sleep the other day as my left leg shot out and kicked. Not the first time. This time I managed not to kick the wall, and just swept over the top of the bedside table.

I am ambivalent about them. They don't too often do me damage. Sometimes they do. In the scale of things that make my life horrible, they are a far off issue. Albeit. A very visible one that Something Is Off. 

Every day has pain these days. It has been like this since, what, March ? No relenting. It waxes and wanes in strength, but is always there. Often it is breath stealingly bad. I am just. I don't know. Resigned to it. Sometimes if I take some painkillers before sleep, it eases it all off. Sometimes I can do better for a day just on one dose. But. It's not as simple as, well, duh, take painkillers. Their effects do not stack on repeated doses. 

I am sleeping a lot. That bit is worse too. Perhaps this is a general "downturn" in a CFS greater cycle. On Thursday I slept 18 hours. Without a "struggle". It didn't feel like 18 hours. It felt like 6. I was up for a handful of hours before exhaustion hit. And I slept again. This time for 13 hours. And just like that. Thursday was gone. Friday was mostly gone. Days blipping by. This is absolutely my norm even on good days. The days blur. The weeks blur. Time passes in a rush. I do nothing. Achieve nothing. Everything else seems to go at too fast a pace. The house decays. The garden overgrows. It seems to move at lightning speed. Everything moves too fast. I hibernate. Lost to oblivion.

There is a double edged sword with sleep. Not that I have any say whatsoever in the matter. I am a ship tossed around in a storm. On the one hand. By and large. Mostly. Sleep offers me oblivion. The tinnitus cannot be heard. The pains cannot be felt. The misery fades. Everything switches off. A reprieve. On the other hand. My physical self still ticking over in the background does not do well. Coming out of sleep is hard. Even with the hydration salts. The hydration salts can often help a lot. But they do not make it all go away. Sleep makes all the demons worse. I deteriorate in sleep. I almost never feel better after sleep. And sometimes. On bad days. If I neglect those salts a bit too long. I start to drift deep. It has crossed my mind when in the past I figured out that taking opiate based painkillers overnight slowed me down so much, and my demons piled in, that it felt like I could, if I wiggled a little, possibly not come up again out of those depths, that now, if I stopped the hydration salts. If I slumped hard. And a codeine chaser. Whether I have crossed that line.

Because I can feel things are worse. Not in my head. Not imagined. The measureable physical symptoms are worse. Not dramatically pitched to off the scale. But notably worse. A stepped degradation.

I tell myself it is ok.

This is how it is.

This is how the end - short or long away - is going to be. These are the steps down slowly into that hole.

I caught myself for the first time in quite a while starting to panic about it. What happens if it gets so bad I am locked in. Stuck. What happens if something awful happens.

It is the wild eyed animal.

But it went away. A brief blip.

Calm. Something awful is likely to happen my dude. Being locked in is a non zero chance. It is one of the many ends that likely awaits you. It is, what it is. There is no help. There is no fix. People can wring hands. Say words. But nothing changes. Everything is as is. People will make demands, both implicit and explicit. Some will worry. Some will flutter. But ultimately. I am background noise. Even in some refutation of that. No. I am important in some peoples lives. It matters if I am here or not. In the end. It's not true. I am background noise. I know it. I am ok with it. I think. It is something perhaps that the human condition struggles with. Not being the center of attention. Not being the thing that matters most in the universe. Perhaps. That's sensible. Perhaps that's the way the biological wiring should be. For me. Perhaps that is another piece of broken machinery in me. I have long given up any such notions if I even had them to start with.

I think the absolute death of any kind of thinking I have a future, or plans, or hopes, or wants, or dreams feeds that with a fierce fuel. It flattens it all out. To a smooth, hopeless nihilistic plain. Dust in the wind.

Meta. I can see. It is not unknowable. I am ground down. By huge weights. Over long periods. And my peculiar shape. Formed by my upbringing. Left out. Not included. Not a person. Not. A. Person. 

I hit that point last week, or the week before in therapy. Just. It fell out of the workings.

It brutalised the therapist again. They took harm from it. By proxy. For me. We paused. I apologised. They said I had nothing to apologise for.

Sigh.

I am not happy about the amount of bystander harm my therapist receives.

I have warned them. On more than one occasion. They reassure me they are an adult. Choosing.

I understand. I agree.

And yet.

I know how poorly humans judge things. Take bites of something they cannot chew. And how often things once done are not easily or ever undone. And so. It troubles me a lot. I care. About the state of my therapist. I do not want to cause them sadness or harm.

Ho hum.

One of the many conundrums.

I trust them. They are choosing. Ok.

If I do not. If I take that responsibility onto myself. Then my only recourse is to push them away. Shut it down. Isolate. Then. No harm gets done. To them.

But very likely. More gets done to me.

But then. It is always like that. And that. Is my pattern. To a dysfunctional fault.

Therapy tomorrow. I have. Nothing to say. Other than just radiate non verbally, my sadness.

Broken.

I say I am broken. Over and over.

The therapist disagrees, over and over.

The therapist once said that they would hold the light. When I could not.

That is some holding. Against all the shadows I can muster. It is not clear who wins. Or that anyone ever will. Yin and yang. Locked round and round.