“Go home pump you’re drunk”
My nurse cracked up at my words, to my surprise
“Seriously it needs to go to alcoholics anonymous because clearly it’s drinking is starting to impair its ability to function and affect its performance at work.”
“Oh my goodness you’re so funny and lovely!” She kept calling me her princess and said she’d do anything she could for me. We laughed and chatted.
I spread my appreciation for Bastille, telling the awesome HCA the story behind the first time I heard their music in the back of an ambulance at the lowest time of my life. Because he had to check my blood sugar, we had a long chat about the difference between type 1 and type 2 diabetes and how he felt type 1 was not appreciated or understood and I must find it so frustrating. We laughed and I actually talked and we chatted.
I was deteriorating and the acid in my blood was building up again. But I was so so happy, and nothing mattered, because I’d just been to a Bastille concert from my hospital bed and heard music that meant so much. Once again it was brilliantly timed.
One of my medications was meant to be running at 8ml/hr, but the pump kept saying the pressure was too high then too low and so it wasn’t running properly. After five hours, only 10ml had been infused. I kept asking the nurse to change or check the pump or the syringe and she seemed to not grasp what I was saying. We say and watched my bloods go wrong. No doctors showed up and nobody was listening to me. That feeling returned. The gentle rumbling of unease, the calm before the storm.
A guy from my course messaged me. I’ve spoken to him once and had no idea he even knew who I was, but HK Uni Friend put us in touch and he’d been in and out of hospital most of his life so he got it. His conversation was much appreciated and it was so refreshing to speak to someone that understood. My friends are being AMAZING.
And then it happened.
5am. I woke up WIRED. Buzzing. Heart racing (because hey I was connected to a monitor so I could see), drenched in my own sweat, uncomfortable, in a mad panic. I probably had a night terror or at the very least a nightmare, but I was in a panic that I couldn’t switch off. Instantly I wanted out. There and then. Here came the freak out. I dragged myself to the edge of the bed and sat up for the first time. The room swayed and reality bent around me. I was in such a panic I couldn’t speak, I let out a weird sort of groan because I was also sort of in actual pain, and I just sat there swaying because I was so dizzy.
I needed to leave. I had to go. Couldn’t stay. Couldn’t do it. Couldn’t even think to what I was so scared of, just had this pure terror that wouldn’t go away. I am attached to ECG electrodes and tied to IVs via a cannula and multiple ports of my central line, not to mention the catheter and blood pressure cuff and some other mysterious wires that joined the knot I am now tied up in. But I needed to go. I decided I’d go to the bathroom because that was where the nurse thought I wanted to go, I could have a quick wash and also… There was a lock on the door.
“You can walk, yeah?”
“Yes” I lied, because damn it even if my legs couldn’t figure out how to I was going to walk. Time to take a leap of faith on legs that until a few hours beforehand had been too heavy for my body to lift. I heaved myself up onto weak legs. My heart grumbled, my legs shook under my weight, the world moved in ways I’m pretty sure it shouldn’t, and I wanted to run. I wanted to run and run and never look back and just go, and this panic caught in my breath. And on my own legs I felt defiant. The nurse took hold of me to steady me and I hobbled to the bathroom, stumbling and trying to ignore the fact that my vision was not ok at all.
She left me alone. I locked the door. I took a minute to calm down and I got back up off the chair someone sensibly left in there, and I couldn’t stand. Eventually I managed to but I couldn’t hold myself still, I swayed and stumbled trying to stand on the spot. And then a flashback occurred from nowhere. From. Nowhere. I was reduced to this mess. All of me was sparking with this electric fear. The nurse tried to open the door, which sort of snapped me back to reality but also sort of triggered a load of memories, and I just couldn’t. I just lost my mind. And it just spiralled and spiralled and spiralled because I once wrote a poem in a bathroom like that when I was so scared and sick that I just wanted the end, and as these memories seeped in like fog there was the thunderclap of another flashback and it startled me. But there was no time to be stunned because I was there again – I could hear it, smell it, feel it in a weird way… And I could not get a handle on it. I didn’t know it wasn’t real. I know now but it didn’t feel like it then. It doesn’t feel like a memory. It feels like the present. It feels like the most traumatic moment(s) of your life all over again. And when it passed I found this hyperventilating, shaking person curled on the floor begging the empty bathroom to please stop. Only I started thinking about the flashback and followed the trail of memories that surrounded it, and I thought that was it. I felt insane. I thought I’d lost my mind or was going to lose it and that I would never be able to leave that bathroom.
So I sat there and sang Pompeii to the wreck of myself. It was the first Bastille song I heard on the radio, and I heard it in the back of an ambulance during a hospital transfer after one of the events I now have flashbacks to. I was a wreck. I was broken. I didn’t know how to talk about anything. And that song made me feel ok. So I sat there like a pathetic idiot, completely out of control of my everything, wanting to hug my dog so he could pull me back to reality and make me feel safe, just quietly singing words that hit the nail on the head.
I waited until I heard the nurse leave the other side of the door, grabbed my drip stand and the catheter bag, and dragged myself back to bed trying so hard not to collapse. My body just couldn’t even. It was only a few metres, but when all your enzymes have been a little denatured by two bouts of acidosis in 24 hours and what was undoubtably the start of it again… Walking feels like sprinting 256 marathons consecutively with no water or food… I’d imagine. If anyone were to do that.
I returned to my bed shaking, and I couldn’t get back in it. I sat in the edge swaying involuntarily, on the verge of passing out from sheer exhaustion. I was re-attached to the monitors and everything, but I still sat there. When I was a teenager, right after I first started getting flashbacks I think, I started not being able to get into the bed. It meant surrendering. I’d go straight to the ward I’d lived in for months and months, and flashbacks would pepper my brain. My favourite nurses would have to literally drag me down the corridor as I fought because I’d be so sick that I was dying, and so terrified that I’d grab at the door frames and the walls and just enter this pure panic and terror, doing anything to get away from the scenes of my nightmares. It wasn’t me, I wasn’t trying to be a brat I just had no control, my brain wanted out. The nurses would try to talk me out of that state as we headed towards the high dependency unit. A couple of times I escaped and I’d be pulled into a hug and talked into turning round only to face the same freak out again. They’d hold me once we got to HDU, and they’d just let me fight until I couldn’t fight, and I’d cry, and then I’d sit in the window ledge because I could not surrender again. It felt like a fight. I didn’t want to hurt or almost die or be assaulted or… I just couldn’t. So I’d sit pressed right up against the glass of the window, lost in this complete swirl of distress, and only when I was physically about to fall down could they get me on the bed. I’d sit on it, but not get in it. And that was when I knew the damage was done.
So for a long time this morning I once again sat on the bed and not in it. If I wasn’t in the bed then I didn’t belong, they didn’t have me, my life was mine and I was strong and independent and… Getting cold.
I think that’s why I stress about uni so much when I’m in hospital – it covers this.
I put in my headphones and drifted out to the sound of Bastille after a couple of hours. Now, the level of acidic bodies in my blood is 1.6. Doesn’t sound a lot, but they won’t stop the IV until it is below 0.3 (they went to 3 earlier because the syringe driver hates me and my body ran riot). I kept asking the nurse last night to check them and she wouldn’t do them more regularly than four hourly. She said it was my fault for drinking lemonade and that I just needed to stop.
My friends are awake and messaging me now and j feel a little more back in reality and a lot more unwell again. My body is used to having a load of acidic bodies hanging around in my blood, far more than normal, but it has been reminded what it’s like to have a normal pH thanks to a magical combination of some IV stuff, and so now it feels completely awful at levels at which it should feel awful.
“We have a lot of cardiac arrests here due to the nature of our ward” the ward sister just began her introduction to some nursing students with that sentence. These guys have crab trolled that need re-stocking so often they have a crash cupboard. She’s now talking about ITU transfers as commonplace, and I’m completely certain that I do not need to be here. Like… In the building. I was well enough to freak out.
No way but… Scared, I guess.