Tried to think of an interesting way to start this post and couldn’t think of one. I just need to blog stuff out, for my own sake and as a way of figuring things out for myself. these words are surrounded by flashy unfocussed smudgy vision and I guess I’m just going to have to get used to that.
I’ve spent a lot of time today covering my eyes or staring straight ahead because I get dizzy and motion sick from looking around or watching people and things move past me in a way that requires me to follow them with my eyes.
They think that the awful headache I had upon admission (that had unresponsive me lashing out and writhing around trying to grab at the back of my head) was a small cerebral oedema (ask your search engine what that is) which has caused a minor brain injury. My fellow third wheel says I’ve been very repetitive and spaced out during the daytime when he’s been talking to me since, and he talks about a lot of things I don’t remember happening. Basically, there was a casualty this time, and it was potentially my brain. We know my eyes are receiving information fine, and the various symptoms I have indicate that the route of the problem is neurological – my brain isn’t interpreting the information properly, or at least this is the theory.
The consultant who saw me on Friday and talked about transferring me to London today if I was still here, came to see me just as my dinner arrived. My fellow third wheel is my advocate. He speaks up for me when I am too intimidated or defeated to, he steers the conversation to the issues I need to address. He tells me when I am being an idiot in acting fine and not telling people stuff, and he pays close attention because my memory is awful at the minute and he relays it all back to me cpatiently when I ask him what we just discussed.
With this consultant we talked about the vision issues and she read trough my notes and looked at the disturbances to my visual field and agreed that there had probably been a small oedema, especially with the history of the headache. She said it so calmly and matter-of-factly. She said it wouldn’t be something they would follow up here as it is so far from home, and also said that they were just trying to get me stable enough to get out of here and not looking to find long-term solutions or ppm any further than getting me off of IV stuff (so no plan on how to survive without IV or IV access).
I wanted to leave. If already wanted to go but I told her I was done. She said I needed to stay for a CT scan, which she expects to be normal so far after the potential oedema. She said if it was normal they would usually move on to an MRI and neurology involvement, as at this stage all scans are likely to appear normal if it was an oedema, but they have to be clear that it isn’t anything more sinister with brains because… Brains… I asked her if the vision ridiculousness would be permanent. She didn’t know.
She said my team in London are extremely reluctant to have me moved there and are keen to get me out of hospital as soon as possible. This is because my team in London know how scared I am of hospitals on account of my PTSD. I hope. I realised they have no idea about the brain thing and wrote an email to one of the members of the team filling them in on this detail.
This time this thing really did nearly kill me. I’ve no idea how not being able to see well is going to affect university. I get motion sick even looking from side to side or moving my eyes. Everything is disorientating and flashing (every time I blink or move my eyes) and there is an after-image for a while after something moves or I look away from it.
My fellow third wheel sat with me al evening and stopped me freaking out. He put a reassuring hand on me or talked and there were hugs because I was free of the IVs so he could get his arms around me, and finally things were going great and it looked like I could go to a ward. He set up my thumb print to unlock his iPad and left it with me so I could watch films. He gave me some of the snacks his mum had sent him. He paid for our dinner tonight. He was fantastic. I could just open up to him and I said I was scared. He knew when I was having a moment and there would be that reassuring hand without me even having to open my mouth. Trust me, there were a lot of moments. At one point I just took hold of his hand and held onto him for a while. It forced my brain to accept the flashback it had just had was not real, and for the moments where it did feel real, I was not alone in it. There was a human connection in an environment that usually feels devoid of all humanity.
He’s cancelled a lot of plans this week to drop everything and stay with me. He is missing a comedy show tomorrow night with one of his best friends. It is so weird to me to think that a friend could care so much.
When he left, after a long hug, I began to overthink things, and knowing I would do so, he messaged me telling me to watch one of the films and keep myself busy. He made me promise that if I started to freak out before 11pm I would call him, that I wouldn’t stay awake doing nothing and would keep myself occupied. He was just there, and I could not freak out. I called my mum and he demanded that I call him right after because he knew it was likely to upset or frustrate me. He kept messaging me asking if I was alright until I called him and then he talked to me until the fear of tomorrow was gone and my sadness about the death of one of the patients (and the sight of the grieving family) subsided a little. He’s going to get here earlier than usual tomorrow to be there when I go for my CT scan.
Awesome nurse is on tonight. Unfortunately I am also on the ICU tonight. This time it was less my body being an idiot and more the fact that my medications were all screwed up which meant I got rather unwell again and ended up back in IVs, which means I will be in this hospital for another day, but hopefully I will be moved to a ward. Pretty certain I should graduate already.
At least I know all the staff on here now, and they are the nicest bunch of people I’ve ever met. Although they don’t quite have anything on my fellow third wheel.
Anyway, I guess I have to get used to not being able to see properly.
No way but through