Jul 12

 State of the Union.

I have given up telling people how I am doing. I have given up talking period really. But when I do. I have stopped telling people how I am.

We covered this a few weeks ago in therapy. Because even there, I was withdrawing. And I had to drag myself backwards to stop that. I told the therapist what was going on. And that the therapist had started to be swept up into my distancing isolation don't tell protocol. And that obviously. In the case of therapy. This is not what you do. Duh. The therapist noted it. Commented about pulling back. Withdrawing. Making myself small.

Whatever.

I've become bored of trying to explain it. Not that I am trivialising it. It is. My life. So this is isolating. Because if anyone truly wants to understand what I am going through. Or who I am. They would need to know this. And. I am not letting people know this anymore. Hence. It pushes everyone away.

Anyway.

How am I. Let's start with the very short list of pros.

Hydration salts. Argue it how you like. But these seem to continue to give me a better stability whenever I wake up. No longer does it take me multiple hours to pull myself together. No longer does it feel like I'm absolutely dying on waking. It's still there. The buzz. Sometimes better, sometimes worse. And notably it gets worse if I fail to have a hydration salt for a number of days. But. It seems to have stabilised that issue out. It all round generally seems to have stabilised sleep a little - I am still sleeping very long often. Sometimes most of a day.

Nausea. Has been mostly behaving itself of late. This seems to be very related to the hydration salts and capability in the morning. It might just be a correlation and not causation though, because the pattern of my nausea often goes through a patch of a few months where it goes entirely. And then comes back and rinses and repeats for a number of months. A few months off. Many months on. With varying intensity cycles within that greater one. So. I'm either in that calm phase. Or. The hydration salts are doing something there too.

Face Tingles. Are down. Currently rare where it flares up and the ants march across the left side of my face. On the other hand. The left side of my face does seem to be... weird. But eh. I'll take less ants.

Cons.

Twitches are worse. It has now become not uncommon for me to wake up because of a particularly violent twitch. I have "thrown" water bottles out of bed. Kicked the bed. Kicked walls. Jerked my back. Neck. All sorts. All whilst asleep. Sometimes on the edge of sleep one will kick in, slam my teeth together. And I cannot reproduce the movement. It's not something I can consciously do. Overall. It doesn't bother me much. I do at times manage to hurt myself in the process. But eh.

Headaches. Odd headaches. Sometimes all day. But. Odd. Not a persistent headache. A sudden pain. And then goes away. Rinse and repeat multiple times. In the same places. This has become frequent. Rarely I will get a more classic - for me - migraine, and this shuts me down properly. Otherwise. I tend to ignore them. If they get bad. I fall back to migraine management - shut it all down and sleep. Sleep is my only half workable remedy to most of what I have. It often seems to re-roll the dice.

Memory blips. Noticeably worse. I am losing more than one word at a time. Getting old perhaps. I've had the loss of a single word for sometime now. I will blank out on a word. At random. I find this frustrating. I have to fill in with blanks. Sometimes it's every day words. Or words I should be very familiar with. I find myself sometimes struggling to recall my therapists name. I have forgotten it a few times. And have to cycle around in my head around and around until it comes back. Ho hum.

Pains. Over the last few months the pains have been at times diabolical. At the moment they have very very slowly dialled down - mostly. But they are grumbling. All over pains. This too is a pattern I have. And possibly interestingly - predates my Gets Very Ill date of 2020/2021. At times this one *seemingly* can be influenced by diet. Maybe. There are very tentative nods towards it being related to *something* in mass produced bread. Or carbs in general. But it's very tentative. The cause is annoyingly ephemeral. But it goes in cycles. Anti inflammatory meds have a noticeable effect on it - beyond their window of efficacy. Sometimes a dose of anti inflammatories over a short period will give relief over a longer period. All in all it heavily implies an inflammation response going on.

Exhaustion and loss of capability. Loss of capability is the big one here. I think a lot of this is deconditioning. Where I have slumped hard because of my inability to do things. A vicious circle, it reinforces itself by taking away any stamina or capability you had to start with. Short walks tax me. Difficult short walks are incredibly difficult. Compare and contrast to when I used to roam over all sorts of terrain for miles every day not so many years ago. And as for the exhaustion. This is harder to track. I definitely do still flatline out. But. The crashes have become gentler. This is I think not an accident. I have been actively not provoking the beast. I have been trying to not hit any bad crashes, and instead, stay away from any kind of crash danger at all, with the small, unlikely, but not irrational hope that stabilising this out long term will help with the bang bust cycle. I have been informed this is a small, but good strategy at long term recovery. Don't keep poking the bear. To that end I rest a lot. I do things in bite size pieces. I no longer push at something. And. I tend to not track so closely just how much downtime I have. I just. Go with it. I think. I am still "crashing out" for multiple days at a time. Noticeably after work. But. It feels softer. Less all in. I do have some control of it. It doesn't do that slip out of my control you will crash and theres nothing you can do about it. Nevertheless. Exhaustion and flatlining out is still, arguably, the most impactful debilitating thing going on in my life.

Tinnitus. Still there. And often a great signal to how the rest of me is doing. At times on waking it screeches loudly. Reflecting the "ill buzz" inside me. I think. I am beginning to see a pattern with this. The "wrong thing" somewhere in my upper gastro is still there. If I sleep in the slightly wrong position and put pressure on the region whilst asleep. I wake to everything have pushed into some kind of emergency ill mode. This is very on trend from when I got properly ill. When no end of positions would give me screaming problems. To the point I could not find any position. I would sleep sitting up hunched over a pillow. Often perched miserably at the end of a sofa having been watching Hazel play a game with her boyfriend. Very very bad. And the infamous sleep wrong, wake up to everything, literally everything being on fire. Electrical screaming fire. Like someone had stuck your fingers in a plug socket and lit you up entirely. Weird shit. Anyway. Tinnitus. It has crept to my other ear. A few days ago, a particularly bad wake up screech was also keening in the other ear. New. Exciting. Misery. It persisted for sometime, then slunk away. It seems to come and go regularly now, but typically doesn't stick around for too long. 

General Illness. This comes and goes. Sometimes like a bad flu without the fever. Sometimes - fortunately - it seems to clear up. I guess you could list this as a pro then. This seems to be more behaving itself also since the hydration salts. Correlation. Causation. Just the usual random up and down cycle. Hard to say. Nevertheless. There are days when this kicks in. It combines with the exhaustion. And other symptoms. And makes for Not Great days.

Mentalry. I am changing. I think. Maybe. High level. You might say I am in my bleakest of all phases. But low key. Not dramatic. No breast clutching flings from high buildings. Albeit. The intent and outcome is the same. Just. Little to no panic about it. *resignation*. This seems to be the word. The therapist has used it multiple times in different forms over the last 5 months or so. I can tell a lot of me has shutdown mentally. It feels like I have gone through the landscape. And come out the other side into nothing. A null space. Perhaps. Run out of fuel. Beyond hopeless. Beyond resigned. Beyond everything. Beyond communicating. No interest. No desire. No joy. Nothing. And it is strong. Stupid strong. It has bastion walls of rational arguments, events, intertwined reasoning. It can paint a picture from the start to the end, proton to heat death, cradle to grave. Formidable. It resists any poorly formulated existential attempts at placation. It is brutal. It is. A large part of me manifest in brutal terrible form. The unflinching, clinical, unafraid of self destruction, truth seeking, grief collecting me. I. Don't think it's wrong. It's one of the strengths of it. But at the same time. It's a particular view point. Not a wrong one per se. Just. One that isn't kind. One that isn't easy. Or healthy. As Nietszche would say, it is staring into the abyss.

Overall.

There are some bits of me that have seemingly stabilised this year. So far. Touch wood. But who knows.

There are some bits of me that have clearly got worse.

Overall. It feels like I have got worse. Dwindled even further. I have I think. Stopped struggling entirely. The last weak twitches of the fish have ceased. And now we slowly sink into the depths.

I have been informed by the thinking machines not to mistake a strong narrative for the truth. Fatalism effectively. It is approximately what the therapist says when they say not to give up hope. And they nudge me from a conclusion to a "currently", rather than "permanently". It is I think a fine line. I agree with it. But also. Wishful thinking. Delusion. Is not a good thing either. But then again. Is that really true. Is it not better to live in happier delusion than brutal truth. I think we know the answer to that one at the extreme end of the spectrum. Perhaps all in all. It boils down to being told to be kinder to myself. Not right. Or wrong. Just. Be kinder. It does seem to be a recurring theme.

Anyway.

There are times this year. I have decided. I wont make it out of this year. 2026 will be my last. However. I know how that goes. I have made this prediction many times. And so far I am always wrong. Ha ha. I am always surprised by how strongly I end up resisting. I find it. Implausible. And yet. It keeps happening. Currently. I think I will make it through 2026. Perhaps ironically I will get this wrong. But it comes and goes. When things are worse. At their worst. It seems highly unlikely I pull out. Peaks and troughs. It's not the peaks you need to project forwards from. It's the troughs. Because they are the things that get you. The downturn. The illness on top. The fall. And you're done.

Cheery.

This too I have considered again this year. It is a recurring thing for me. In some fantastical landscape. I am being trained. Relentlessly. To understand pain. Suffering. Loss. Mortality. To ensure I have peak empathy. Peak anger at how such a thing could exist. So I can then go be the mini deity of suffering. Piers Anthony Incarnations of Immortality or Neil Gaiman endless style. The endless all begin with the letter D. So. I suppose. Distress. Very human. Always seeking meaning. A face in the clouds. Surely. This all must mean something. Have a pattern. The pattern seeking human brain needs a pattern. On the plus side. I'd get a cool goth sister in the form of Death. But. I think. I would do a good job at that. Being kind. To those in distress. It would be who I was down to the bone. But not to inflict. Not to punish. But to empathise. And be kind. And attempt to lessen. Being the avatar of something does not necessarily mean you have to promote it and champion it. You can instead soothe it. Tame the worst of its inclination but not deny it.

Fantasy.