I assume there is a plan for me but I haven’t seen any doctors for over 24 hours, nor have I been freed from my many IVs or started on my usual medication again. I haven’t been given any heart tablets the entire time I’ve been here despite the doctors being asked multiple times, and as a result I keep getting palpitations. I was finally unplugged from the ECG and heart monitor this afternoon when my body finally settled out of acidosis, although things didn’t go perfectly smoothly.
Still, I expected my consultant to come back to talk about me going home… Or at least Dr Survival to visit on ward round to tell me a plan. I woke up very very late, exhausted again and still with acidic bodies flowing about among my blood cells. Nobody came. I thought maybe my consultant might come round after clinic or whatever it is he does all day. He’d gently talked about me staying a couple of days when he’d seen me the day before. Nobody made any efforts to switch me off of the IVs and it took me until 6pm to emerge from my denial (although is JT even denial if you genuinely did think you’d be going home?) and realise that I probably wouldn’t be going home tomorrow, that he’d probably just been trying to calm me.
I asked my nurse what the plan for me was. It sounded longer than a couple of days. We are waiting for stuff that may make health things easier to manage until I go through hell on earth and nobody seems to be great at communicating, least of all with me. My consultant wants to start the new treatment plan but talked about potentially and reluctantly maintaining me on the old one for a while if it will take too long. The medical team in charge of the ward are unhappy and want me stabilised on the new plan before I leave. I’m not sure if the both agree now and if they do I’m not sure whose side they picked. It’s just my life y’know, I’m the one it all affects – never mind telling me!
Uni Babe sat with me all afternoon (she was so understanding about my PTSD) and two other uni friends joined her later on (including Italian uni friend who was my first pal at university). They were sat there when I got a reply back from a member of staff at university who runs two of the modules whose coursework I am unable to submit/ attend the lab sessions on due to this hospital stay. My plan had been to break out today and go to the lab but walking and I still don’t go well together and have been exhausted just from talking to people. I emailed to ask for some model results so that I could still do the coursework and assured him I would submit the piece due in tomorrow. I got a swift and very kind response, and didn’t realise just how panicked I had been over the uni situation until I wasn’t any more (I didn’t inform my personal tutor – this was the time last year that led to me almost being kicked out and I’m terrified of a repetition of that. The student support officer was copied into my lecturer’s response and a million alarm bells went off in my mind but hey). I smiled so much when I read that email. He apologised for me being unwell and said he hoped j was better soon, but the bit that got me was the part that said I didn’t have to worry about he work and wouldn’t be expected to complete it at all and WILL NOT BE PENALISED for missing it because I have an extenuating circumstance. This is… Amazing. When the uni were pushing me to interrupt my studies I was told that occasions like this wouldn’t necessarily be ECs because I’ve been in hospital for this hiccup before. Plenty more meme era of staff have told me that this is utterly ridiculous; but those words have stressed me out and made me too terrified to go to hospital or miss anything for the last year. It was so good to read the opposite. SO GOOD. We celebrated. I took a photo of the screen just to confirm to my brain it was real.
All three of my friends were also sat there when I realised I probably wasn’t going home tomorrow. Tomorrow is Friday. If my consultant isn’t here over the weekend that means I’m here until Monday. I don’t like waiting. And nobody has any idea how long I have to wait because nobody has any idea who is taking the lead in my care, what’s actually happening, or… Basically I may as well ask them how long a piece of string is – any length, who knows. My uncle is over from Hong Kong with his heavily pregnant wife this coming week (their baby is due on Christmas Day) so I’d like to be out of here by the weekend and free to see them.
Uni friends left, and my old friend from sixth form “Batman” showed up with some DELICIOUS chips. We had a good chat and late in the evening I was moved out of the high dependency bay into a side room that was huge and faced out on a view the same way as my view from home. With a little help I’d succeeded where all else had failed and managed to get “Batman” to seek help and also accept antidepressants. This was a huge, huge achievement, but reading week is coming up and she needed a push to get uni stuff sorted out, so I persuaded her to log into her emails on her laptop and together we wrote an email to her personal tutor (who has dealt with very serious and awful personal issues like a pro without telling “Batman” that it isn’t her job…). I typed so she didn’t have to see the words, and I hit send while she hid. I knew how scary it would be to send that email, so I promised that if she could send that email, I could stay in hospital. We shook on it (right now I so, so wish we hadn’t. Right now I’d die to get out of here. Right now fear and tears reign supreme and I am DONE.) A few hours later I was informed that the two of them are now meeting tomorrow and I was thanked yet again unnecessarily.
I settled in the quiet, got very dizzy and then passed out. I don’t deal well with moving about. I don’t like feeling unsettled and I don’t like feeling enclosed so I like windows because watching the world go by calms my brain a lot.
Just after midnight I was moved to another ward, to the metabolic ward that I usually end up on for this hiccup. “The sister there says she knows you” I was told as we began to move and they disconnected me from everything because they wanted pumps. They wouldn’t change my bed sheets and hadn’t been listening to me. I moved to a ward I knew. I didn’t know the nurse looking after me but I knew the ward sister. They out me in a bay where all the curtains were shut, away from the window but next door to the bed I spent three weeks in a year ago tomorrow. That’s where my uni parents became my uni parents. It is also where, last time I was admitted, I acquired a creepy stalker who is now banned from the ward. I didn’t know he was banned, I just remembered the hours of frightened sobbing with uni mum while I hid from the ward and staff tried to make me get the police involved (I was a scapegoat really – they didn’t want him on the ward) and persuade me and my drop stand to return to their care.
I feel kind of abandoned by my consultant and misplaced, and because the other ward wanted their pumps two of my IVs are currently missing in action because these guys are trying to get everything sorted. I had a nightmare so my bedsheets are wet with sweat, which has kind of mingled with my own blood which also seems to be getting everywhere. I nearly died on this ward before. I’ve been through hell on this ward too many times. It looks identical to the one I’ve just been on but it isn’t. These walls are stained with memories, and I am next to a bed space where I sat pressed against the cold of the window up here on the eleventh floor willing the glass to give way and let me fall for so long, watching me course mates walk past to go to lectures.
Maybe with the support of my uni parents again I could do this. But it’s quite clear where we all stand there. They understand it and they know how to calm me down and stuff. It isn’t there job and never should have been but they refused to back out of the role when I needed people to fill it.
I’m freaking out. I’m just FREAKING. Out. I can’t do this. I can’t do this. I can’t be here I don’t want to be here. Half an hour to an hour longer on Tuesday and I wouldn’t have to be doing this now, I wouldn’t ever have to do this ever again. This isn’t me thinking like this. I’m not this. I’m not this scared, emotional wreck. I’m not the monster inside of my head. This is the PTSD. And it has me regretting the fact that I stayed alive, it has me longing my most recent friends acidosis and arrhythmia to visit one more time. It’s a harrowing moment when you feel that death would be a relief. It hits home when your mind is so broken that you actually will the ship to go down with its captain right after the captain nearly went down with its ship.
I’m sure a few days after I get out of here things will be great again and normality will resume. But I won’t shake this. It will still have me – this state, this monster. I fight to keep my body going every day but my mind… There will be a disconnect between me and reality. I will be home but my mind will be here. My mind will be reeling, terrified.
To those who ever called me strong or brave – do you now see how not either of those things I am? The admiration occasionally directed towards me is misplaced believe me.
I’m sat here at half past one dizzy and slightly hypothermic (despite being under pretty much every blanket they could find in A&E, which I’ve collectively kidnapped) and tied to two drip stands and… I just want to cry. I can only apologise if you thought I was better than this.
No way but through I guess. No way but out. Now way but… Help me.