In yesterday’s post, I confessed that I had no more to offer than some highly emotional word turd taken from the notes section of my phone. I am afraid today is no different, and the next few posts won’t be either. Unfortunately I have been struggling a lot with my physical health as well as my mood, and so, so much was left unsaid. Unless I capture the raw thought, there is no point in even attempting to find words because out of the moment I cannot find the right ones. For example, among all this, my next door neighbour was a constant. She was like an extra mother, a life coach, and we have been walking the dogs together whenever we can and if not, just hanging out. Among all this, personal stuff happened. In fact, a lot of extra stuff happened. I got a lot worse than these words show – so bad that I saw no point in anything, least of all trying to capture the thoughts so I could make sense of them for myself later.
So here it is. Another word turd. I was terrified to post yesterday, for reasons I sort of possibly explained, but the comments I got in reaction to that post weren’t what I expected at all, and I sincerely thank the people who left them, because they gave me the oomph I needed to post this today.
“On urgent list for surgery, sending his secretary over to scheduling to see when they can fit me in.”
It snowed for the first time in a long time, and settled here in Kent, but not really in London. Everything looked beautiful. My mum left me to sleep through dinner.
“Mum so helpful and friendly when I’m normal person ill. She can relate to that, sympathise with it.”
“Almost refreshing to be unwell with something that doesn’t have the power to kill me. But me getting normal people unwell is usually disastrous, because it makes all my health hiccups hiccup, putting me into the sort of state that does have the power to kill me. Every time I get an infection I end up in hospital, usually ICU, because I almost died again.”
“Mum insists on doing everything for me. She went out and bought a whole bag of extravagant foods and stuff that I used to really like, in order to tempt me to eat something. Won’t let me get anything for myself, left me to sleep through dinner. Told me to sleep, got me loads of stuff, waiting on me hand and foot… and this (“illness”) is genuinely nothing at all.” I felt grim but I wasn’t dying.
“That moment when you’re meant to do three separate graphs for your coursework and you’ve done it all on one graph with three labelled lines, and its the first bit of work you’ve done while having a breakdown and now you know you can’t even follow an instruction right (this was followed by a series of upside down smiley faces and then a crying face, because I had given in the coursework days early)
I am a failure
I’m doing uni but not well
[My next door neighbour] has been praising me all week saying she’s so impressed (she took me to and from the train station a lot and walked the dogs with me most days)
Today Mum said I did well as she didn’t think I would do it and get through the week and my heart isn’t there and stuff so apparently just submitting anything is enough.” Only it isn’t.
“So I got this message saying I had an appointment at [specialist hospital in London that deals with hearts including mine]. Thought oh good I’ll get to discuss the surgery with [Dr (let’s go with cardiologist because I’ve forgotten what I refer to him as usually)]. Then get a letter saying the 20th is my pre-operative assessment. Then below it had an admission date for surgery in the brand new building that looks like a hotel. At 7am… On the 31st of January. Couldn’t have been better timed; have a lab due the Friday before and then nothing assessed until the Friday after. Caught me off-guard though. I knew they were rushing everything forward but this letter was sent days before they could arrange any of that. Haven’t even seen him. Don’t even know what they are doing or why or if I will have a general anaesthetic or anything. I fear the unknown because I can’t prepare for it, so I got stressed I …”
“Haven’t done anything today. Woke up at 7. Came downstairs and started typing some lecture notes, fell asleep.” Basically my throat was agony and tasted of blood, and what started as a tickle had turned into a pain that spread right down into my chest. The pain made my heart go NUTS. “Heart very fast, chest pain from heart but this morning couldn’t breathe because it felt like something sat on my chest. Hurt too much to cough. Slept all morning dosed up on opiates. Watched Elementary while [my dog] laid on top of me and snuggled under my chin (he’s a 31kg labrador) which made breathing even harder. I can’t eat, I’m knackered, and all I’ve done is sleep and I ache everywhere… and that’s refreshing because that can’t kill me. It feels nowhere near as awful as my usual version of unwell. But it triggers events that will put me there. So I’m just letting my body do what it wants to: shut down and sleep and sleep and ache and sleep. Freezing one minute and melting the next. Dizzy if I even attempt to sit up. Heart way too fast. It’s annoyed. Deep joy.”
“You look the same”
“I’m not” – Taboo, BBC
“I’m terrified I might die on an operating table and yet my desperation hopes that will happen. A natural response to my fear of dying seems to be to long for death.
Now have a chest infection. It hurts.”
I think this was the day that along with the usual pink froth (caused by my heart letting fluid back up in my lungs) I started coughing fresh blood.
I compiled a list of evidence as it occurred to prove that someone in this household has an aggression/anger problem that I refuse to delude myself into thinking doesn’t exist like everyone else does. Happiness is not pretending you’re happy. Ok isn’t just pretending everything is ok. There’s a clear issue we’ve addressed so many times and suddenly we’re all acting like no, things are perfect. Pfffft.
“The roads we walk have demons beneath and yours have been waiting a very long time” – Benedict Cumberbatch, Sherlock, BBC
“This isn’t torture this is vivisection” – Sherlock, BBC (There was also a part in this episode – the final one of this series – where they used the word soldiers in some awesome way that it would take me forever to quote).
“Today I really can’t breathe. Was feeling better yesterday but I woke up today feeling rough. Went to uni, mum drove me there, gave in my coursework. Went to lecture. Seeing people was really not good for me I just couldn’t cope with it. Lecturer didn’t show up so went home. Slept from 2pm until dinner. [My dog] curled up on me. Coughing a lot more today. No energy to do anything. Dizzy. Worried they might cancel my surgery.
Mum and I stopped on way to uni, she bought me McDonalds. We laughed as she ate FIRE (or as the menu called it, a piri piri chicken wrap). It was nice.”
“Was kept up all night by shooting electric shock pains all over my body, mostly left side, legs, left shoulder. Kept having witches and spasms. Happens sometimes, but my body really went for it last night.”
“Got my copy of Carve The Mark by Veronica Roth”
“Things I suddenly cannot deal with
“I do not have the energy or the substance to throw myself onto the flames of someone else’s self pit. I am irritated that they have once again found their way to my doorstep, because their owner has no intention of fighting fire with fire – they hare happy to walk up to the raging inferno/ burning building of myself and ask me to use what limited stuff is left in my fire extinguisher to put out their tiny little puff of cigarette smoke. And then they drive themselves home in a fully functioning fire engine and leave me. That’s how I feel. Like everyone drives up to me in free engines, smiles in my face as I burn, asks me to put out their own teeny tiny trivial first world problem fires, and then drive off in their fire engines to answer the calls of tinier fires in the homes of people they’ve never even met.”
At this stage my friends were freaking out over the absence of a lecturer they all moan about constantly and trying to arrange a leaving party for him or bake him a cake and hoping he was alright and asking if it was weird to offer him any support they could offer. These are my friends. Who didn’t notice I’d moved out of London and also hadn’t been in lectures for an entire week. This told me a lot about myself, when it meant nothing at all. The irony was brilliant. A couple of my friends were annoyed about it on my behalf, which then made me pull this meaning from it all. I wish it had never been planted in my mind. I wish they’d left it alone.
“Nobody noticed my absence. Nobody would miss me if I left. Right now. And I don’t know where it came from because I thought it was leaving. I had my dog and I did revision notes. No work, but revision notes. I always think I’m not clever enough to be at uni. I don’t feel it. I feel like all the work is a mountain and I’m so far behind and so scared that the uni’s solution will be for me to drop out until my health improves (so forever then, because it won’t) that I won’t tell them. Little things, like people being dramatic about trivial little issues are too much, and I don’t want to go back. I was crushed by this emotion and I spent the last hour trying not to cry. Everything I try to do spirals into this big mess of thought and failure. My parents are really pushing me to go to uni tomorrow and I’m nowhere near well enough to do the commute.” Then I wrote about some uni crap,
I’m angry at the world all of a sudden.”
“I’m so disorganised I don’t know anything people ask me if I have a lab and I used to know these things and now my friends are just telling me when I have then except now only one person because nobody cares I can’t do it oh no help I’m going to fail.”
“Already knew my heart surgery is on the 31st. Got a phone call from surgeon’s secretary about removing growth and underlying cartilage. Says 8th of February. I have a PBL (problem based learning tutorial) session at the medical school then so had to cancel that date. I said that was too close to my other surgery because I didn’t want a lecture about putting my health before uni. She was all the 8th of March? The day before my 21st birthday. I was going to relent and go for it, and I said yes, but then my mum was all it’s the day before your birthday you don’t want to ruin that (been there, done that, got the t-shirt and the opiates and the birthday spent in a world of pain). I asked if there were any other times he would do it and she said no I couldn’t wait any longer than that so we went round and round in circles until she was all after that the earliest it could be done wouldn’t be until as far as the 22nd. That would be two months between first showing anyone the growth, and having the thing removed. The NHS waiting list after they decide you need the surgery (not from the initial consultation) is meant to be 18 weeks. Erm. What. Cedric, what are you?” (yes, I named the tumour Cedric. It helps me tell myself he’s harmless because Cedric sounds like a harmless sort of name – please do not now send me a list of serial killers called Cedric to prove how illogical/ incorrect I am).
I just got completely overwhelmed because I worried about leaving Cedric so long and I was still thinking about the other surgery
“Me: I don’t care I don’t want to do anything any more,
Mum: You think I do either?! *walks out of room in frustration*
I am a dick.”
“I am so done. With all of it.
I’ve thrown myself into uni work but there’s no passion in it. I tried to write a blog post and almost cried in the end because my words are so wrong and people think they understand but they don’t. Even people who’ve been through every single event of my life wouldn’t understand, because they would understand and experience it from a different viewpoint.
What I want/need to do is quit uni. But all my parents care about is me going to uni, never mind how bad it is for any form of my health. I want to focus on my writing.
I want to move to Canada
Looking at my dog and working today with him sleeping in my lap and across my legs as I typed notes, I wondered how I ever managed to be apart from him.
Only one person has messaged me since Monday. Good to know where I stand.”
“I don’t want this surgery any more. Any of it. He [cardiologist] has made such a mess about it and put so much extra stress around it with the not knowing ANYTHING ABOUT WHAT OR WHY THEY ARE DOING TO MY BODY… I like to have a plan and know what’s going to happen and what they want to do and why and if there are other options. I like to feel in control and like it is a choice and he took that away. All of it. He doesn’t even know and he didn’t even mean to but he has.”
“Nobody has even asked me if I want to go ahead with the heart surgery. I haven’t given consent. I feel like I don’t a have a choice. It’s majorly triggering my PTSD (which was triggered by horrific experiences in paediatric wards when I was younger).”
“He had to make a five minute phone call. Just when you think you actually matter to one of them, they remind you that you’re just a hospital number in their appointment list. No thought about how the person might feel or what a big deal it is to them; I know he’s thinking about my life but is he thinking about it for me or him? Sometimes I wonder. I let my guard down. I guess I’m more annoyed at myself actually.” Basically he was the one doctor who seemed to care about me as a human. He always remembered and discussed uni and everything, and he seemed like he might be a good guy. And he was just like the others as soon as he did that, because my PTSD made me relive things and the fresh fear convinced me he was just like them, that I was going to feel every snip of a surgery or be screamed at or assaulted or… Stuff.
“Why do doctors even have so much power? They’re human, they’re flawed, and yet even when they are students they think they are above everyone. Self importance ruins people.”
“I seem to be unable to do anything other than uni. Which would be great… Except I have mostly done last semester’s work, rewriting notes from lectures I actually attended last semester (so… Hardly any) or even staying up to date or attending this semester’s lectures. I’ve started revising, but right after I’ve written up the notes. It started because I was so in love with immunology that I didn’t want to work on anything else.
And y’know… I’m only focussing on the modules I like. Which means they are the modules I could do in my sleep because they interest me so I remember: Immunology (I’ve only been to two lectures), molecular bio (only four lectures of that) and physiology because that’s cardiac and respiratory and THAT IS MY JAM. I am a cardiac nerd.”