Feb 5

 I have slept late today. But. Unusually, by choice, not forced. Today is the first day I have nothing to do, no places to go. It is nice. Being able to choose to sleep in and rest is lovely. Being forced to do that is miserable. The secret ingredient is agency.

Today I am subtly downshifted into the arms of CFS malaise. I have a small suspicion this is directly related to lowering my salt hydration amount. I think it's pretty damn clear at this point that salt hydration when I wake up has a massive impact on some of my CFS symptoms - notably, how much sleep I need, and how quickly I can "wake up" of a morning. With the salt hydration I am... ballparkish... normal. IE it doesnt take me four plus stupid fucking hours to begin to feel human after waking - I don't feel like I've been poisoned and am dying - and I am not sleeping round the clock.

This would tend to suggest that the bump in energy and feeling better after my surgeries was indeed due to the IV saline.

It would also tend to suggest that the hypovolemia suspected by the machine overlords is correct. This is apparently common in CFS people. ( I wish one of the many health specialists I had seen would have told me this, but I very strongly suspect, they don't know. That information just isn't taught )

https://me-pedia.org/wiki/Low_blood_volume 

So. Salt hydration is counteracting this. It's a hack. Not a solution. Your blood volume sucks. Ok. Lets hype up plasma creation by feeding your system plasma creating stuff in the morning. IE. Salt and water.

The downside, your blood pressure is going to rise.

Yesterday I took Hazel home. I wasn't super stressed about this, despite not being anywhere near stable at the moment. I am not sure if she just wanted to get home, or, was self screening as she was... spicy. I thanked her for her help, dropping everything to come babysit me for a few days is an amazing feat that, to be frank, few if any would - or perhaps correctly could - do for me.

But it does come with a cost. The borderline personality disorder diagnosis is no joke. She has come to the conclusion that she is "better" these days. I absolutely do not see it. She shifts from at best being chirpy on some better days, to commonly being subdued, to often being angry and surly with everything. And woe betide you get in her way or defy her or argue with her. And 99% of the time, she only wants things to be angry with. Not happy. Not appreciative. Not kind. Just angry. It means you have to be very careful with how you interact with her. And. Obviously. Any relationship with her is primed to be an abusive one. Where one person is continually angry, steps up anger if you place a boundary, and has no issues in going all the way.

But I understand these things about her. And we noodle a path that mostly works.

On Monday as we went to the GP, she was somewhat sticking the boot in. By her standards, nothing. But. It was nevertheless an assault. I very gently asked her to be kind. Be gentle with me. Don't beat me up. She paused in her pummelling. But in the GP she was very forthright, overriding me, disagreeing. Difficult. At one point I had to put a strong boundary down. No. That isn't right.

Don't get me wrong. I super appreciate her being there and helping me. But it's not a simple ride in the park, all sweetness and light.

Let me put it this way.

It is 100% the opposite of the kind of support I get at therapy.

Anyway. Moving on.

Today the anxiety demons are less. The physiological switch is still on, but only just. The whole system is primed for any kind of wobble. High alert. So. I have to be very careful about what I am thinking. Or doing. No planning. No forward thinking. No nothing. Just. Exist. In the moment. No looking for sad things. No snagging on sad memories. Empty your head. No berating myself for not doing this or that. For not engaging with something. Just. Empty head. Inner critic. Off. Forward planner. Off. World simulator. Off. Everything off.

And wait.

For the half a million year old designed system in me to stop running away from tigers.

The problem is. No one thought to put those controls in a control panel. To allow you to switch them on or off manually when you need to. It's all. Wireless. Magic. Great when it works. Terrible when it doesn't.

I can feel the physiological anxiety creeping up. This is likely what it will do today as the day wears on. Get worse. And then. Retreat as the night comes on. This is the circadian rhythm in effect. Your body hyping different things at different times. Increasing awareness - and anxiety - chemicals during the day to keep you alert. Toning them down in the evening to let you sleep. As my baseline is already hyped. I can feel that subtle tide.

The NHS nurse noted that I was very aware of myself.

Uh huh.

I have had to be. Not choice. Survival.

I am not sure what I am going to do with myself today. It's a tricky question. I do need rest. The week has been busy. And I can feel that too. If I make a single mistake today I will pay for it one way or the other.

Blood pressure has come down a smidge compared to what it was, the orthostatic is still high. Today is 135/94. The bad day it was 158/98. At rest. Which is no bueno. That being said. When I was in my "early ill phase", my bp would happily sit in the 160s/100s. Something which one of the ambulance crew said they had never seen it stick at that level before. And is a level you're supposed to go see someone somewhat urgently. Also there was the infamous GP visit where my bp clocked way way higher than this. And prompted the GP to immediately call the hospital stroke unit. And I got to sit in A & E for a fruitless 4 hours before being told to go home.

A good few weeks ago my bp was around 123/80. 

I am not "chasing numbers" with it. I am just monitoring it every few days. Hopefully. It will continue to drop. My expectation is that it will be lower by next week. Until then. I will continue with the half dose salt hydration to split the difference between beneficial effect and not overloading the bp during a hyped up period.

Who knows if any of that makes any kind of sense.

I'll talk to the doc about it next week if I get a chance.