Rebellion (in the form of a small adventure)

There are various rules to life with a femoral line. Most significantly – do not leave the building with one in place, preferably not even the ward unless you’re going for some sort of medical procedure or y’know, the place is burning down.

With a thick line peeking out of my femoral vein and into the real world, and 4 lumens which each branch into 2 (yes, I seem to have been connected to that much stuff) – it looks kind of like a tree protruding from my groin and spreading its branches all the way down my thigh. It’s anchored in place with two very loose stitches which pull every time I move my leg, and after a week, the insertion site burns and stings and is painful.

I decided that yesterday was going to be the day of my departure in the middle of a long and sleepless night during which I would have ended up near death if I had obeyed the instructions of doctors who cannot communicate, had little urgency, and seemingly not a single flying (insert appropriate rude word here) to be given.

I spoke to my community nurse this morning. She called me on her way into work and we discussed what had gone on.

Dr Survival appeared yesterday morning. He asked me what had gone on the night before, and he knew I needed to just… Speak. He said it was ridiculous that I’d been told not to listen to my nurse’s advice, and that I should keep regular contact with her and listen to her advice regarding medication doses and things as she communicates with my consultant (providing a link between him and I when he isn’t at this hospital and stuff) and knows me and my case better than any of the staff here. We discussed the confusion over the injection that keeps me alive – how I’d been told it wasn’t signed for so I hadn’t been given it, and didn’t really remember giving it, and the doctors had gone against consultants instructions and decided that I didn’t need it without wondering why it was written up in the first place, and how I was then told later in the evening that I had been given it after all. The doctors said no, it hadn’t been given. It was documented nowhere. I then said that a repeat blood gas was meant to be done in half an hour, and the doctor had strolled into the room 8 ½ hours later ignorant and arrogant and clueless.

I told him just how much medication I had had to sit in the bathroom and inject into tiny veins between my toes like a druggie. I told him that I’d been told not to give any medication at all until I’d been seen by a doctor, who I was told was probably going to start me on the IV medication I needed to save my life, but who turned up hours later with not a care in the world, so laid back he may as well have been horizontal. I pointed out that I had been told off like a child for giving medication – multiple times the amount that some people give throughout an entire day, because that’s how much it took. I reminded him that my pH had been 7.35, and that if I hadn’t taken action myself I’d have been in a situation. He said “oh undoubtedly so” and basically admitted that I had saved my own ass. I reminded him of the incident last December, where I was given none of my medication for 18 hours after being told I needed to be here so it could be given intravenously and my butt could be saved. It was the first time we met – me losing the ability to be able to draw in breath, dying in front of him, somehow holding on. I told him it had happened again. I told him I had a secret supply of needles and injections and medication and knew he was meant to tell me off and lock it away with the rest of my drugs but he didn’t, he told me to use it and just tell him what I’d done. He told me to take full control, to do what I knew needed to be done. We agreed I’d be safer that way.

I told him that I would be safer at home, and that I wanted to leave. He quoted some of my blood results at me, and gently suggested that leaving wasn’t the best idea. I said I wanted to go. He looked at me (his eyes are kind of piercing hazel and always hypnotise me) and kind of pressed his lips together sympathetically, shook his head, and said he couldn’t let me out until I was more stable, but that if they dropped to a nearer normal (not even normal, because we know my blood will never get there) he’d let me go. I told my consultant anaesthetist friend the numbers of some blood tests, and when he heard of the pH situation alone, he told me to stay.

In the evening, after a day of my bloods getting consistently worse and then finally, finally dipping just below our agreed threshold, I celebrated the fact that I could leave. The junior doctor told me I could leave. I’d been planning to push for some sort of reliable venous access, but the arrogant asshole doctor put me off the idea of even bothering to talk to any doctors ever aga-

Too much apathy

I can’t even finish this post.

 

 

Ok. Several hours later, let me try to words. Basically… Erm… How do I start this again.

Long story short, after telling me that I could leave, my attractive male nurse (offish, but attractive) walked off to check with the doctors, and it turned out they wouldn’t let me leave. I was at such a level of not caring about my existence (and I’m the third person in this bay to currently feel that way, because there are now three of us who are friends and we spent hours yesterday each just saying we were so done and so beaten and dreaded the next time already)… Anyway I was at such a level of not caring about anything that I didn’t even care about the removal of my femoral line. Unfortunately, the doctors wouldn’t remove it (this actually happened before they refused to let me leave). My brain had been set on the idea of getting out yesterday, and I was sat over by my hospital friend (the only real one I have in here) when I was told I wouldn’t be leaving. My brain instantly decided we were going for a walk. Offsite. Out of here.

Now, let me remind you about my femoral line. I should probably also point out how highly unstable my bloods are being. I didn’t care. I don’t know how to explain it, but earlier that evening a little bit of emotion started to seep through, not enough for me to be able to identify it, but enough for me to sit with my friend and cry. There was a pressure building whether I was capable of recognising it or not, and I needed to relieve that I guess. Subconsciously I think the meltdown never stopped.

Being in hospital made the pair of us feel dead inside. It can do that, to the chronically ill – kill you mentally and make you question the point of existing at all (again, multiple people in this bay are currently feeling like that – all three of us chronically ill). Breaking rules… It made me feel… A little more alive. We said we were going to stand by the main entrance and they got funny about even that. But we headed to the main entrance. And we kept going. And we walked along the busy, busy main road in the dark and the rain, me still in my pyjamas and not too bothered about that fact, finally breathing air that didn’t smell of hospitals and trigger flashbacks… and we went all the way to the huge supermarket. Nobody knew we were in hospital. We walked into the supermarket arm in arm, and we sort of discussed how nobody even knew how sick we were in that moment, that it was our secret out here, that we blended in sort of. We went to the clothes section. We bought the softest, fluffiest pyjamas we cold find, and I got slippers too and bottles of drinks. And then we went to Subway. And we bought edible food. And after an hour, we went back with shopping bags and hot baguettes, and everybody knew where we’d been, but nobody said a thing. Nobody could blame us. Nobody was angry.

Processed with MOLDIV

Top row: Stepping outside of a ward for the first time in six days, then stepping out into fresh air for the first time again too. Middle row (1-4 left to right) 1 – in my pyjamas in the supermarket, 2 – buying ALL THE things, 3 – Subway, 4 – wandering back through Whitechapel at night (the tinier dots of light are the windows of the hospital we escaped from) Bottom row: Wandering in the rain, my purchases, comfort at last.

We got back and they re-checked my blood and it was all screwy again. And if I were capable of feeling an emotion, I think at that point I would have broken down in tears, and just crumbled. But there is nothing left to crumble. I didn’t care though. I decided I want to manage it myself even in here. It would feel safer, which is warped.

I put my head in my hands and I was all NO, but it wasn’t emotion, it was exhaustion. I didn’t want to do it again. I was significantly closer to impeding disaster than I’d felt I was. I decided I was hungry again. My friend gave me her hospital biscuits. Next to her is an old lady who doesn’t speak any English. Because of this, the old lady’s grown up sons take it in turns to sit with her all day, right up until she falls asleep. One of them had laughed when the three other of us decided that today we’re all going home no matter what, and I said I’d race the other two. He gave me the food that he’d brought with him. People can be nice, I guess.

Bloods this morning – good and also confusing at the same time – because one number isn’t really normal but it’s lower than it was so I’m not sure whether to celebrate or not.

Dr Survival is here, time to try and persuade him that I don’t need to be. I want to be freed from my tree.

In my blood, my mind, my body and in my conscious mind in the form of my actions…

There is a rebellion.

 

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