Jan 24

Sleep is more of a shit show than usual. I stayed up way late the other night, until dawn, finishing off some work that needed to get done before midday. I figured my choices were - try and rush it in in the morning when I would likely be dead, or, do it until dawn when I felt a little better, and then sleep.

Neither are great options. The til dawn one is the better one for me however.

Today I have mostly slept. Again. I said I would pop my head in to work today to catch up on a meeting and some jobs. Which I only just managed to do by 4pm.

Today was asthma checkup day. A visit to the asthma nurse to have a quick chat about how its going and do a blood pressure check.

Asthma care is one thing the NHS have got completely right in my case. They are proactive - they make appointments with me not the other way around. They listen. They care. They tell me to call under the slightest circumstance. It is all you could ask to be honest. No complaints.

Today I rushed out to the appointment, queasy. Feeling unwell. I apologised to the nurse if I was dishevelled or smelled, not a good day. Oh, whats up with today. Don't feel well. She queried what was going on, and.. listened. The nausea was a worry. Did you want us to do some blood tests she asked ? .... yes ? That would be good ! She listened to my CFS stuff. She said. It sounded frustrating. And hard. YES. And it must make you worry a lot. YES.

It was shocking. I was seen. And acknowledged. I said the mental health side of it was never talked about, but it was very hard. I said I had had a mini panic attack a few weeks ago.

She cared. She listened. She empathised. She took some blood tests to see how my various functions were doing.

My god.

A response. From the NHS.

My blood pressure was lop sided. High. Too high. My weight had dropped 8kg.

I've been tasked with home monitoring my blood pressure for a while.

I would take a guess that my blood pressure is higher because I feel unwell all the goddamn time.

Doc appointment on the 3rd. The nurse was going to book me an appointment but I said I had one on the 3rd. So. Good enough. The results will be back by then she said. And if anything urgent comes up they will contact you.

Ok. Good stuff.

Funny. I always have a good experience with asthma checkups. Even when it ends up not being about the asthma. Perhaps nurses are the best ?

Todays eating started very slow again.

Couldn't face it.

I ate a vegetable soup without enthusiasm. Mechanical. I stop halfway. Too much I think. Nausea has been up today. A little worse again. But has faded as evening wore on.

Ho hum.

I came home after the docs and gave a brief review to Hazel. She frowned and me and gave me a mild ticking off about the blood test. She said I should have asked for it last time. And then I started to cry a bit. Overwhelmed. Oh I'm sorry she said, I didn't mean to snap. Not you I said. It's not you. Oh. Is it because someone was nice to you ? It's. Just being seen. You fight every day. And get no notice. No care. No acknowledgement of how hard it is. And then someone sees you and says, that must be hard. 

I get overwhelmed at those points. Because. It's like years of struggle. You just keep on fighting. Without the need for acknowledgement. Or care. Or kindness. You just keep on. And then someone is kind. And it's like popping a balloon.

I also can get it when people are genuinely nice to me. I find it hard to cope with. I am not used to people being nice. It is. I think. The psychology of being embattled. Constantly fighting. And when someone lays a hand on you to stop. All that build up comes out in a wave. That mask breaks for a short period. And all the anguish comes out.

A little kindness goes a long way I find.

Sigh.

A lesson that seems to be almost utterly lost in the current sea of narcissistic greedy corrupt assholes.