It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

One Thing Too Many

Something is very wrong and I don’t know how to make it right. I don’t know how to BE right, is more accurate. My brain seems to be done. Completely overwhelmed. I’ve no idea why. Maybe it’s because I was so happy with my 3am discovery (see previous post) that I gave up on sleep. Maybe it’s because the new drug I am on is PURE EVIL IN IV FORM and has made me feel like death BUT ISN’T DOING WHAT WE NEED IT TO. Maybe it’s because a doctor walked in this morning and told me that tomorrow (instead of today as I had been told) one of his colleagues is going to slice me open as casually as if we were discussing the fact that this hospital room has no windows, and nobody has appeared to explain what is going to happen in any way shape or form (I have to have a plan. It’s my body, my life, and right now I feel like I’m the only one left in the dark. Not being in control at all scares me). Maybe it’s because I was already completely overwhelmed. Maybe it’s because I got worse overnight. 

(Note: the standard of this post is shockingly awful. I am trying to put words to things that don’t even make sense to me and that make me so ashamed of myself as a human that I have no intention of reading through it after it has been written. I’m irritatingly weak and pathetically beaten, and you’ll have to excuse that. But I want to be real. As a society we often romanticise illness with fictional stories that tug at heart strings, but it also has an ugly side which unfortunately I am about to mention a lot)

My brain is no longer thinking, it’s reacting. I’ve hit this wall, this huge great mental barrier, and rather than climbing it or scaling it I’ve curled up in a crying little heap at the bottom. I’m too exhausted to fight with my own mind any more, and so today it called the shots. I seem to be refusing all IV things that I am not currently hooked up to (there are three on this drip stand, and four other things prescribed which I just cannot handle being given). I’m not doing it to be awkward, and not even because I think it’s something I should do, it just happens because for some reason when someone walks in the room with the next IV I now completely freak out and tears well and I just cannot. It’s one thing too many. I’m so overwhelmed that every single new thing is just too much today. My brain reacts to being so overwhelmed by… curling up in a ball and deciding it’d rather just feel like death. Or face death. No more waiting. It’s cruel to drag it all out. I don’t know how to do this any more. 

A (lovely) dietician came to see me this afternoon because being intubated has messed my throat up to the point that I still can’t swallow anything without choking. She wanted to put me on a puréed diet and told me I needed to stop and appreciate that I’ve been doing all the right things and my throat is at fault, not me. My friend sat there while we had this chat and I just watched reality cloud this happy mental place I’d been lost in. I’d been in this little bubble – I had a video from the stranger who happens to have a brain capable of making music that saved my mind (apparently the video was his idea), I had the company of my friend from the Bastille gig all the way from Manchester… so the awfulness had been so far away. And then just like that it had me. With a new pacemaker and a puréed diet I suddenly felt like an 80 year old. I remembered where I was. I stopped feeling like a normal 21 year old human. I remembered how I felt emotionally. I remembered the entire situation and it hit me like a train. So did the fear, and what I can only describe as a desperate helplessness (nothing we do is working, we’ve thrown some nasty drugs at the situation and it’s still deteriorating). My voice cracked, the tears welled. My nurse just said “Bastille! Play the video!” So I played the dietician both videos I have and I don’t think she was interested (although she had heard of Bastille) but it helped because I couldn’t cry for a few minutes after that. I was furious at myself for being such a pathetic idiot. When she left, the tears fell. 

Soon afterwards, a doctor walked into the room to take bloods (to check the nasty new medication wasn’t causing kidney failure or messing up my liver or making my muscles break down and poison my blood – as it is known to do as some of its “less common” side effects). I looked up, and off my brain ran. Tears immediately gathered again, my voice broke. I didn’t have the energy to say no, or the confidence. I rolled up my sleeve, both of us knowing that getting blood from me is a near impossible challenge that usually requires an ultrasound machine and an anaesthetist… She put her tray of equipment down on the bed… I saw all the blood bottles and needles ready to go (she’d brought a few because she knew she’d have to have many attempts – the vein my PICC line is in is so small they can’t take blood) … and I was just completely overwhelmed. My mind crumbled. I just stared at my arm and sank inside. The doctor said she didn’t have to do it then, and asked if I wanted to wait. In reply this tiny voice that sounded kind of like mine said,

“Can you come back later please? I’m really sorry, I just can’t. I don’t know why. I’m so sorry.” She was totally calm and very understanding about it. I’m so hard to bleed that my “daily” bloods are taken like… once a week. So it doesn’t even happen often. I’d thought I could do it. I had tried to swallow how overwhelmed I am right now and offered her my arm but I just couldn’t. After that I was embarassed. I was ashamed. I felt pathetic and ungrateful. I apologised profusely, and then withdrew to somewhere in my brain that made my eyes brim with tears as I lay on the bed (by that point I was too unwell to leave it). 

I have no idea why, but every single thing is just too much right now. Every time a member of staff even walks into the room I find myself holding in tears and my voice breaks as I try to speak. I haven’t seen my consultant since Sunday. I have no clear plan, just – sit, wait, slice tomorrow (Thursday), sit, wait, hope. And I have nothing left to give to my thoughts or feelings. Maybe I’ve cried it all out. 

Staff keep telling me that this is understandable, that I’m doing better than a lot of others would in the same circumstances and that I’m coping so well. They tell me I can’t see that because I’m.. me. When I apologise for crying at them and argue that I don’t need to be here (knowing how many people had cardiac arrests on this ward today alone), they tell me I don’t appreciate how serious the situation is, because I’ve gone from feeling so extremely unwell with my heart before the surgery that this still seems like nothing to me… But it isn’t ok or justifiable, is it? It’s ungrateful and ridiculous and really really not a good idea (brain, please take note). I just have no idea how to deal with this, no idea. I ask for help and just get told that given the situation my reaction is normal and human and ok. 

But how can it be ok when my brain is here like, “Right ok so I don’t know how to deal with this any more so let’s go into denial and refuse to switch IVs every few hours so it doesn’t feel like we’re in a hospital… And then let’s decide whether we’re going to just run away into the night or ask for a self discharge form…”(???)

How can it be ok if when the nurses explain that y’know… the grim reaper may gain a new customer if I did that, my brain is all “BUT WHAT IS THE POINT?! NONE OF THIS IS WORKING! It isn’t working and I’m terrified of everything getting worse and killing me so naturally let’s just wander down that route with open arms because hey at least then we aren’t out of control and in a crisis, just in a crisis.”(???)

Honestly, nothing is improving my physical health situation and now it actually seems to be deteriorating. I’m so scared it won’t stop in time to prevent the worst case scenario. I’m also scared by the fact that my brain can no longer face… anything remotely to do with hospitals… whilst I am an inpatient… in a hospital… relying upon some IV pumps 24/7 to keep me alive (luckily the most important things were connected BEFORE my brain shut down and so I’m still getting them 24/7).

Not even sure why I shared this, but hey. 

A Little Too Much

I’d be lying if I told you I was doing anything other than sitting in a hospital bed crying right now. I don’t know how to do this. I am drained and alone and so, so scared. Another IV has been added to the 6 drugs my new PICC line (Pablo) was already juggling over the course of each day, and the clinical director (who gave permission for my procedure to take place) saw me this morning and expects that on Wednesday I will end up having the wound in my chest cut open back on an operating table (and then still maybe two procedures after that). It should be no big deal. Way more minor than the extreme procedure he approved for me to undergo a couple of weeks ago. So I should be able to shrug it off. But I’m scared.

Fear isn’t something I let find a home in me often, and when it does I usually pile denial on top of it and wait for it to dissipate, but this fear is eating me alive. There is more than one health hiccup that could go very wrong here. Three different specialties came to see me today alone (as did an amazing friend who I met at the Bastille gig in May, who travelled all the way from Manchester to London to spend the day distracting my brain and quite honestly made my week). Things are complicated. There are too many things to consider and be worried about and too many thoughts to try and queue and process. So the fear hits all at once in a big jumble that I can’t untangle and streamline and sort because there are too many things to be scared about and all of them are justified. 

Among all of that, I smell that hospital smell and PTSD throws in a flashback or two and pure, raw terror tears through me like wildfire. In its place seeps a fear for my wellbeing, a fear that we aren’t winning this yet despite throwing rather a lot at the situation; a fear that things seem actually to slowly be getting worse after an initial halt in the course of things… and then maybe a sound or a different smell will trigger another flashback, and I’m curled in a ball trembling and sweating and scared like I didn’t think was possible all over again, until the other fear seeps back in. 

And I’d be lying if I wasn’t crying because just now my brain thought about the possibilities of how long this could last and what could occur and said to my body “Hurry up. Please just hurry up. Enough. Too much. Just do it already.” 

I’d be lying if I told you that the fear wasn’t eating me alive, and that there weren’t so many elements to it I didn’t even know which parts of it to focus on to start trying to manage it. 

Being here in itself shakes me to the core, turns my world upside down. Too much has happened to me in hospitals. Mistakes have nearly killed me too many times. Mistakes have resulted in emergency surgeries that went wrong and left me able to feel every cut for a very brief period of time. I have been bullied and belittled and neglected by staff. I have been legally assaulted by a paediatrician. I have been traumatised during hospital stays on children’s wards and in a children’s hospital in ways it is too painful for me to even talk about, and I carry that always. It causes nightmares, flashbacks – great big terrifying obvious things that leave me helpless to my own terror… but it burrows deeper than that, it affects me far more than even I comprehend. It also means my brain finds danger everywhere – in every word or act of concern, in every “I care” or “I want to help you”, in every medical professional, in every hospital, in every element of any thing that helps and heals. Because those are the things that broke me, that hurt me, that killed me inside and left this version of me behind. So I cannot trust these people with my life because people just like them almost took it from me (these people are lovely, but PTSD overrides logic). And it’s like being trapped in my own mind, in this endless cycle of flashbacks and fear because now I am “with it” and well enough to… lose my mind. 

And maybe that on top of the justified fear makes it harder. Maybe reliving the old things so frequently and vividly that you cannot separate them from the present… doesn’t help things. I want everyone’s concern to die away, I don’t want to be having big serious conversations about infections spreading to heart tissue and blood becoming acidic and leukopaenia and all of that. I don’t want to hear doctors say they are concerned. I don’t want to hear about how completely awful the situation could get (worst case scenarios that are actually plausible SUCK). Because I cannot deal with it. There’s no room. I can’t face reality because I cannot cope with it any more. Too much. I can’t handle this fear and I. Can’t. Run from it. I can’t leave this reality. I’m tied to it (literally, I drag 4 IV pumps around with me everywhere… and a peacock that I made from a glove – his name is Pierre and I made him a nest from a bandana which hangs from my drip stand).

It’s like rapid machine gun fire, but I can’t even finish falling before the next bullet hits or the next specialty walks in with some other different plan that my brain can’t handle right now (and also means that whatever the person before them decided now needs to be changed to avoid y’know… a crisis on top of the current disaster). I know this is super pathetic. I know. I keep being told that this situation warrants tears, but I know beneath my feelings that it could be worse and I hate that I am selfish enough to indulge my own emotion. 

All I can think as I sit here breaking is that I honestly have no idea how to go on, and for that very reason I need to stop other people going through stuff like this. I need to help just one person take just one moment like this out of their life. And so it makes me want to raise money for charity more. Because I have to take this away from someone else. I have to. I can’t stand the thought of anyone else buckling in the way I am right now. I don’t know how to handle the thought of someone else feeling like I do right now – it’s too late to save me from these moments (clearly) but it isn’t for someone, somewhere – and I want to help that someone. 

I’m tired. I hurt. After being intubated for my procedure I still choke on everything I try to swallow. This could be a thousand times worse, and physically it’s the kind of thing I can handle, it’s nowhere near the nastiest things I’ve been through, but… A lot is going on. That doesn’t help things. Mentally… I’m lost. This stuff just isn’t stopping. Right now I need a break from my health hiccups and life is just cranking up the dial. I’m in a specialist heart centre but non-heart factors are ruining things. I honestly honestly do not know how to face tomorrow. And I think my eyes may genuinely just be faulty because the tears will not stop falling.

Here comes the nurse with another IV to start. 

Where I’m At

Those of you who follow this blog will probably have noted that there are certain circumstances which drive me to post:

  • Things are great and I want to share that
  • Things are not great but I’m trying desperately to get a life
  • I need a place to vent 
  • I feel I should let you know I’m still alive
  • I’m in hospital
  • My world is falling apart a little 

You may also have noted that the long pauses in my more recent posts are usually driven by common situations too:

  • My health is so shockingly appalling that blogging is the last thing on my mind and I cannot function enough to read or eat or leave the bed
  • I almost died again
  • My mental health, reliant upon failing physical health, has deteriorated to the point where I am on the verge of a breakdown and possibly considering stupid and drastic actions to end the situation (which usually means ending myself) and the effort of fighting those thoughts consumes me
  • Things have been really really great and I didn’t have time to post 

Take a wild guess as to where I am right now. Almost any of the above would be right, because all of the above statements (except the very last point) are true. I have been awake for half an hour and already cried. I don’t cry, it’s something I hate to let myself do, and yet I also spent an hour last night unravelling and crying uncontrollably (until I remembered that the music of Bastille existed and pulled my thoughts away into their songs).

I had my heart surgery two weeks and two days ago now. It took six and a half hours. It was “extreme” and “challenging” and the people who came to see me afterwards had never seen anything like it before. I woke up happy, and immediately decided I had to raise money for charities that fund research into that area of medicine so that other people could have their lives changed too (and also so that others don’t have to experience the same things I have). And my life did change that day – my cardiologist put the entire world back at my feet. 

I can now walk AND talk. I don’t cough pink froth. I can lay flat, I don’t get breathless at rest or even when I walk. I can walk more than 5 metres without almost passing out. My resting heart rate is HALF of what it was (so FINALLY normal). It’s magic. Pedro the pacemaker is stepping up to the job of telling my heart to beat (the part of Skippy that tells him to beat is now dead). But Skippy, being my heart, is having a few teething problems. My blood pressure drops to 50 systolic and sits there for a couple of hours just because it can. And there’s a post-op infection. So I’m in hospital on a lot of IVs to try and keep me and my other health hiccups stable.

I’m in a specialist heart hospital in London. I’m miles from home and most of my uni friends aren’t in London any more as it is summer. I have nightmares and flashbacks to terrifying and highly traumatic events which occurred in hospitals when I was younger, and then wake up in a hospital bed and struggle even more than usual to persuade my brain that we aren’t in those situations any more. 

I have feared for my life with legitimate reason to, and a few days ago genuinely thought it was “curtains” to the point that I found myself sending final goodbyes to family members and friends because my case was complicated by my blood deciding to become acidic, and nobody knew how to manage the situation. The treatment I am on seems to have stopped working within the last couple of days, and I’m frightened about the severe decline that could happen whenever my body decides it hasn’t messed with me enough yet. I may need two more general anaesthetics in the coming days or weeks to prevent any further decline, and we’re waiting and waiting to see if they can be avoided. They’ve no idea how long I will be here, I just keep being told that it’ll be quite a long while. There is a lot of uncertainty, way too much time to think, a lot of pain, a lot of drugs, and a lot of emotion. And it just won’t stop. There’s no break, no time to get my head around one disaster before another strikes… and no more capacity to cope. I can’t cope any more. And so the tears arrived and I cannot stop them. 

The staff here pretty quickly learned how magical Bastille’s music is to me, and so I am frequently told to listen to it. I play their songs out loud into my hospital room as I sleep, and when I wake shaking and sweating and buzzing with fear, their sounds dampen down the flames in my mind and pull my attention and thoughts somewhere safer. Not many people here had heard of Bastille before I appeared on this ward, but it’s fair to say that they have now been educated, and the band has gained a few fans! 

I found myself in a place where nobody and nothing could reach me last night. For days I had been trying to hold myself together for the sake of those who are justifiably worried about the current state of my health. I know I’m lucky to have had such a chance taken on me and my heart, and I’ve been more focussed on making sure others can have access to that same chance. Last night though, reality became too heavy for me to shield others from the weight that is crushing me. Talking to my mum, I started to cry… and I wiped away the tears but they wouldn’t stop. 

My thoughts jumped into an abyss of uncertainty and hopelessness from which I thought there was no return until my reality changed, and that reality has the potential to become much better or… completely wreck my heart. Until that point, moments like that had fuelled me to want to raise money for charity even more, so that someone else could be spared from such feelings and moments. There was still a slight element of that, but also… I cried until I was too drained to really move. I just could not. And then I played a song. One song. (Pompeii, because it rescued me from an equally uncertain hospital situation the first time I heard it) and I could settle enough then to sleep. I don’t know how music does that, how it runs in to a mind on fire and floods away the flames, but I’m very grateful that artists decide to share it with the world. 

I guess then, the reason that I’m posting is because I don’t know how to do this any more. I am utterly, utterly broken and drained, and there is no break. I’ve been through worse, I’ve been in hospital for years before, it’s just tough to cope with this right now after so much, and even tougher to cope alone and with the trauma of PTSD forcing you to relive the most terrifying and traumatic experiences of your life over and over and over. I don’t know how to do this any more. I honestly don’t know how to be ok. I don’t know how to settle and I don’t know how to stop the tears because even when they don’t physically fall inside of me they’re raining all over the place. 

All I have, in this moment, is a heartbeat and Bastille’s music and… an awful lot of hope. I hope this situation changes. I hope I get the future I want and am able to raise money for the charities I want to help in the way I’ve already been planning. I’ve been too unwell and in pain (and on pain medication, but my body seems to get less high from it now) to post or really contact anyone, but today I just need… I don’t even know. Nothing can help because this is all on my body. And that’s a beast I don’t know how to tame.

I need to save other people from that, from this. I want them to have the chance I have had and I want to erase the fear and the hopelessness from the timelines of their lives by funding research that can help them to have chances like this too (minus all the bad luck afterwards, but hopefully with further research they can stop hearts getting grumpy about such drastic procedures like Skippy has). I am incredibly grateful to my cardiologist (who says this is just a blip). He’s given me a future and an entire life to live… now I just have to take that future back out of the hands of my body. Right now it feels very far away. But I will appreciate every moment of it, every step I take. And more importantly, I will use it to help others. Morally I can’t not try to pass this good on and I have big, big plans (wow I did not expect a positive end to this but clearly part of me is still alive and kicking). I just have to find a way to make it through today. And that… I just don’t know how. 

No way but through.

Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

The Deep End

Sometimes it’s difficult to know how to start these things. So I guess I’ll start right where I seem to have found myself lately – the deep end. Bring a boat, or you may drown.

On the 1st of June I went to see when my next surgery could be done, and what damage the procedure at the end of April had caused. They’d go in through my chest the next time, I thought. 50% success rate. Risk. But a manageable one.

Only he didn’t say that. He said sorry.

He confirmed that the procedure in April had not been a success. He then said that the surgery I had pinned all of my hopes on was way too risky for him to attempt, even if he went in through my chest. When he told me why, my logic agreed with him. He said there were no medications left to try. That wasn’t an option. No conventional or routine surgery was an option either. And he said sorry. And my heart broke into a thousand pieces, not because of all the other implications attached to that, but because I just really wanted to make it to another Bastille gig, and I knew that meant I’d never be well enough to go. Whatever happened at the gig I went to in May seems to have marked the start of a decline so severe I’m now housebound. Most days I can hardly stand. I am too dizzy to lift my head, and don’t have the energy to do anything. I am too breathless to eat, lungs crackling as fluid decides they are a great place to set up camp… My vision fades to black. I spend most of my days in an involuntary sleep. My cardiologist looked at me as we discussed this and just said sorry.

And I watched it all go. Goodbye degree. Goodbye… Everything. I sat in that room and lost it all. I sat, the two health professionals talking to my mum, and I have never felt so lost or alone. Nobody saw me cry. I was grateful for that. My mind went somewhere nobody could reach it.

But my cardiologist is a DUDE. He has done some ground-breaking research in his career and still likes to push at the edges of what’s possible and what isn’t. For example, the procedure he carried out at the end of April was so unheard of I couldn’t find it on google, and the other cardiologist I discussed it with told me it couldn’t possibly exist or be attempted because it would kill me (he wasn’t far off. It’s ruined me a little bit).

I could tell by the look on his face that it was going to be a decision I shouldn’t make lightly. He told me there was one more thing, that this really was the only thing left to try. He didn’t know if it would work. It wasn’t something he wanted or would usually ever think of doing in someone so young. But he was offering me hope in the middle of a void, and before I even knew what it was I took it. I hung from his words.

One thing left to try. I’m doing a degree in biomedical science, so I knew what he was talking about, and I couldn’t actually believe what he discussed was possible. It is, by no means, conventional, but maybe one day it will be. So I listened. And I was terrified. But I was desperate. So when he asked me what I thought, I said yes. Not quite that quickly, and not quite in those words, it was more of a “If you’d told me about this a month ago I’d have told you no way. Now, I want to set my heart on fire. Don’t really have much to lose.” But he told me to think. He told us to go away and to email him. And he just kept apologising.

Things got more overwhelming than that. We decided I needed the surgery within 3-5 weeks of that conversation. The NHS emergency wait list is 12 weeks. The private waiting list doesn’t exist. They use NHS theatres in the evening, have their own ward in the same hospital, and it could have been done within days. He told us he didn’t want us to have to pay. He said sorry over and over and said it wasn’t fair and it was wrong, and you could see that the idea of it made him uncomfortable and very bothered. But we admitted there wasn’t any other option. I couldn’t really speak after the appointment. My mum talked a lot. I put in my headphones and played bad_news quite a few times, until the emotional bottleneck in my mind turned into a torrent of feels.

Turns out that if I wait for the NHS, the surgery cannot happen until NOVEMBER. So that made the decision for us, I guess.

I’m not going to name the price here, but it’s way, way too much. My family can’t afford it. The money will come from my uni fund and goodness knows where else but they say that doesn’t matter, they’ll find it. Finances are going to become very tight. And my self hatred makes this a huge moral dilemma, because I cannot justify that expense on me. It’s only me. When you struggle to attach any value to your life at all, seeing such a large one after a pound sign is very, very hard to handle. I already owe my family enough. I already felt guilty. This guilt became bigger than me. It crushed me. It was almost a physical ache. I asked them not to pay, I told them not to do it. We can’t afford to but we also can’t afford not to. What made me feel even more guilty is that I am so desperate to have the life that this procedure will allow, that despite all of that I still want it. I hate myself and I hate this situation and it’s just… Breaking me.

In order for me to have a life, I have to wreck my family’s… And they will always, always come first. So I found myself in this weird situation. With hope – hope I daren’t take but couldn’t let go of – incredibly close to ending my life. Genuinely I did, to save them the money, to stop the guilt. Because we don’t know if this will work. What if it kills me? It’s going to kill the part of my heart that tells it to beat, what if I go down with that ship? Ideally I need to go into hospital 24 hours before the surgery to be stabilised with IV medication, but we can’t afford that. So what if I almost die afterwards from another health hiccup like last time? What if I need intensive care? What if it all goes wrong? Suddenly this huge value has been attached to my life and I just can’t handle that. I can’t understand it. Morally, this all just feels so wrong.

In the middle of all that, I almost died again. I was meant to be seeing Imagine Dragons in concert that night, but was already too unwell to go. Skippy started a riot, and my blood became acidic in response. I found myself in a resuscitation unit, concern slowly rising, deteriorating after treatment. My heart was such an idiot that my veins were too empty to find. They stabbed at my arteries instead, and even they were hiding. I thought that was it. Honestly, I thought I was going. My mum put in my headphones and played me Bastille, and my mind went somewhere else – she witnessed the power of their music, and from that point onwards people realised the headphones became as vital to my survival (mentally) as the IVs (of which there were 4, and at one point more I think). I lost the ability to move. I barely had the energy to breathe. I drifted off to the sound of Bastille, becoming unconscious and totally unresponsive as my body bailed on me. Panic happened, but not in my brain. I lost myself in the songs. The critical care guys got involved. I woke the next morning unable to lift my head without the world going black (my blood pressure was way, way too low despite a lot of fluids, which meant that rather than me being dehydrated, Skippy was just too knackered to play fair). I told them I was leaving that night because I needed to vote. I did. They had to wheel me to the main entrance because I couldn’t walk, and just crossing the road to go vote made me almost pass out. But hey, I voted. And then I tried to wrap my head around how on earth I’d made it through.

Awful, tragic things are happening in the world, and I always shut down my own thoughts and feelings whenever I hear of them. I have no right to hurt over my situation, I have no right to cry for it. How dare I? Given everything that’s gone on in my home country alone recently how dare I? And yet, the sinking feeling will not stop intensifying. So I just put in my headphones and go somewhere else.

Upon reflection, should I have gone to see Bastille that night? That’s tough, because none of us had any idea Skippy was going to do what he did. He’d never beat like that before EVER or done what he did then. I’m mortified that it happened there. Waking up from 10 minutes of your heart LOSING ITS MIND and seeing Bastille on stage as you open your eyes is kind of a good way to wake up though. But I’d rather have remained conscious. I feel awful for all the fuss on that night in that venue and everywhere since (especially the trouble taken by two members of Bastille and their management to make me a video).

I don’t know where I’m at.

My surgery should hopefully take place at some point next week, and I only found out I needed it two weeks ago. I want it more than anything in the world, and I really don’t. The main reason I want it is because I want to be around and well enough to go and see Bastille again at some point in the future, because a) I am determined that my heart won’t win this one, and b) I’m kind of living for that. Music is powerful, live music is kind of BEYOND magic.

There’s been a lot more going on, but I don’t want or know how to share. Please understand if I don’t post for a while. Sometimes that means I’m on a rollercoaster I don’t know how to get off of, and I just need time. It probably also means I almost died again. Today it also means that everything keeps going black (or Skippy drags me to an involuntary sleep) and then I wake up mid-sentence with no idea where I was planning to go with this post next, hence why blogging is also very confusing and difficult and takes FOREVER right now.

I have no right to complain right now I know, and I hate myself for feeling bad but I just can’t turn it off so please forgive me, I’m trying to get a grip and I just keep spiralling downwards. I’m more upset about London today than for myself, and I hate that my mind still dares to let its thoughts drift to my current situation. The world needs a reset button I swear. 

No way but through.
P.S

One of the most incredibly humans I have had the pleasure of meeting has a little company that makes films, and she is so lovely I recommend checking it out! She’s proof that young minds can create some pretty powerful things, and the idea for her first short film touched on several important themes (I’m actually going now I promise).

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.

Something From Nothing

In some sort of superhuman feat, I woke up 12 minutes before my lecture this morning and six minutes later was leaving my room in a half-asleep sort of zombie state to go and listen to an hour of physiology. In my defence, we usually have those lectures on Tuesdays, and I had been up until 4am on the phone to my friend (more like BROTHER because we were so close) from sixth form. We hadn’t messaged for over a year, and he dropped me like a hot potato in our last year of sixth form when he got a girlfriend, but he’s broken up with her and he was in a bad place… And I just wanted to go back to old times.

I forgot how well he knew me. At uni I have to explain the past to people before they understand the way I am now, but he lived through the past with me, he knows me so well that it was spooky but SO NICE for someone to just see through everything and just know how I work and… Who I am (nobody here really knows, I put a guard up that I cannot take down, and I’m always away from them). We started off talking about how he was, then how I was, then we had a big long catch up and then we just ended up hysterically laughing for hours. We reached a level of immaturity that we both admitted we hadn’t been reduced to since we last spoke (and could not display around any other human), and it was amazing to be able to talk like that right away after so long not speaking at all. It was the familiarity my brain has been craving, it was like going back to sixth form, and we laughed and talked about all the funny stuff and how we used to drive our biology teachers mad by just laughing all the way through lessons. He wants to meet up over the Christmas break, and damn it I’ve missed his hugs. We are SO close that he was basically my brother. He always used to say he loved me like a sister, and his family are so nice even when we’d play darts and mine would bounce off the wall and nearly impale us all.

After lectures I did something I’ve been meaning to do for ages. I filled out an extenuating circumstances form to officially declare all the work I’ve missed. It was such a faff, but it’s not even that I’d been consciously putting it off, I just hadn’t been able to find any importance in anything enough to take action. I was kind of anxious that in putting it all in writing I was giving the university bullets to end my uni life with. But I missed a tutorial and still produced the essay that was set in it so… I feel like I’ve done myself a favour there. SC Uni Friend sat with me, and we had a fight with one of the many huge printing machines to make it photocopy the medical evidence I had to provide, but after an hour long battle with the entire process, I went and handed in the stupid thing.

And then I’m not really sure what happened. I went back to my flat and planned to wait until it got dark in the afternoon and go and see Kew Gardens at Christmas or something. I decided that I am going to go to the Hunterian Museum tomorrow (it’s a museum at the Royal College of Surgeons that is just FULL of preserved anatomy specimens and surgical equipment, including some pretty AWESOME and significant stuff) because going to the Natural History Museum yesterday made me realise that I was mostly specifically there to see the preserved brain and spinal cord, and I feel that now I’m all adult and anatomy obsessed, I should seek out a place that my brain will find as awesome and mind blowing as it used to find the Natural History Museum’s basic human biology exhibit.

One minute I was sat on my bed trying to plan these things… And then all of a sudden I was waking up feeling drugged and slow… and it was 7pm. So… That went to plan (not).

I’m trying to get out and do something every day because I’m mostly just trying to switch my brain back on and taking myself to places that I’m hoping will ignite some sort of ANYTHING. I don’t want to shut myself off and just stew in the stagnant state I seem to be stuck in. I’m just trying to figure out how to fully function again, because at the minute there is no importance in anything.

I realised last night when on my super long phone call, that this Tuesday was the first time I’ve ever missed a lecture just because I couldn’t find motivation or importance or… A care in the world. Usually the only occasion on which I will miss a lecture is if I physically can’t get out of bed. Although it’s basically a rite of passage for any student, it should probably be a huge deal. It means things in my mind are probably worse than I thought, because my reason for living and getting out of bed in the morning… No longer gets me out of bed. Honestly, for the last year and a bit, university has motivated me and been my reason for doing anything really. Not only can I now not feel any interest in what used to be at times the only and most important thing my life, but nothing matters. At all. And I should probably have some sort of feeling about that, but I don’t.

A lot of people I know are broken at the moment in the same way that I used to be. They are struggling to cope, but they can function. They are still stressing about things and worrying about uni work which means that they can still find importance in at least something. Buckling under so much stress and being unable to cope is where I was for a few weeks, and it sucked and I hated it and I couldn’t cope… But I could feel. Looking back now, I realise that not all hope was lost, because the fact that I was stressing about things (like uni… And then after a while not uni but just… Not dying) meant that I still attached some importance to them.

And I mean… I’d like to find that again.

I have an assignment due in tomorrow (I mean to be fair I missed the lab but I still have to do the lab report at some point) and one due in on Friday, and then another one next Wednesday along with a test or two that are happening online next week… I have NO notes (I mean, I have some typed notes, but I haven’t made them full sentences and stuff or handwritten them and they are only for about 5 weeks… out of 11…) and also… I haven’t started working or revising for ANY OF IT. And I literally have no feeling about it. It just… Isn’t even a thing to my brain. As coping mechanisms go, this one isn’t so great. It’s keeping me alive and on the planet and most of the time not overwhelmed (unless social interaction has to occur) but… It’s going to wreck my life.

I feel like there is a heaviness in my mind now instead of a void (numbness to me feels heavy and deadened, the void was just light and airy and there was NOTHING in there at all. I can think now, just. I can talk. I can respond. Not fully function, but respond, so the void is gone), which means there is some sort of feeling or thought there, and there’s now enough of that for me to be able to act normal. Words are just sounds, easy to make and harder to mean. I’ve re-learned how to plaster on a tone, and how to make it sound like I’m talking about something when I’m talking about nothing. It’s giving off an illusion that the few people I can deal with being around at the minute seem to have fallen for well. It isn’t healthy, it really is the wrong thing to do, and it means I won’t get the support I need, but it’s literally that or I can’t talk at all and my brain is just all ASDFGHJKL.

I am trying very hard not to do… Nothing.

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Today’s Christmas jumper (yes I’m sat in bed fully clothed in this picture, don’t judge, my windows don’t shut so my room is FREEZING) People are amused at the amount of Christmas jumpers I own. Is there any other kind of jumper to wear this time of year?

 

Bite Me.

The last couple of days have been something comparable with the lovechild of a hurricane and a rollercoaster… on steroids. Life’s favourite time to kick is when you’re already down. And yet… the kicks don’t even hurt any more. Not at the minute. There is no capacity to hurt, and when there is, there is no capacity to hurt any more. I’m starting to vaguely feel – not fully and not properly, but at least a bit more consistently.

This is where I’m going to make a weird request, because (unusually) I remembered that a handful of people are going to read what I write here. Specifically, that concern is about the 2-3 people reading this who met me before they ever read any of these posts. If you met me before this blog existed… Please don’t read the rest of this post. Not yet, anyway. I kind of… It isn’t something I want people who know me like that to really find out in a post, I think? I’ve chosen not to really talk about it to people I know yet, because hey it’s probably nothing, and I know I can’t stop anyone reading on, and that asking you not to builds a whole lot of intrigue. But please hang in there for a while. 

I mean… Now I continue, I guess.

I had a hospital appointment yesterday for a totally new thing. It isn’t new to me, but it’s the first time I’ve actually had it looked at. Long story short, earlier this year I started getting minor nosebleeds from one nostril. Then I noticed a small lump. The lump grew, the nosebleeds got far more frequent and much worse, and now there’s a constant trickle of blood down my throat and every hour or two, a red river all over my face. The lump now obstructs my entire nostril, is hard and has a bunch of blood vessels over it, and has recently changed in appearance. The back of my mouth has started to feel weird, and on the same side it looks a little different (like red and weird). I decided it was nothing, and certainly that something as pathetic as my nose wasn’t worth bothering anyone about. But I mean… It’s A LOT of blood now. So I went to see an ENT consultant, who was the first person I told about it to decide it may be a good idea to look at it.

He had an appalling bedside manner and was blunt and clinical and methodical, which I liked. He sat me in front of him and  looked at it, without saying a word got some equipment and briefly explained what he was going to do before he stuck a camera down my other nostril and into my throat, and then looked into my mouth… And then we sat across from each other at his desk and he looked up at me and without any build up said

Unfortunately there’s no treatment option other than surgery. We need to remove the mass and the underlying cartilage. Do you have any questions?

Yes! So many questions! But all I could say was… Is that going to hurt?

It’s a something-I-can’t-remember-because-I’m-half-asleep-oma, he thinks. Now I mean… Part of me had been expecting this little lump to need to be removed, but a much larger part of me thought I was going to be laughed out of his office, or maybe he’d make it bleed and just cauterise whatever bled and send me home all fixed. I did not expect him to say that there was a whatever-it-is-oma with exposed cartilage that is on/adhered to the nasal septum. Like… Surely exposed cartilage should… Hurt? Anyway he wanted bloods there and then, and a CT scan ASAP. He said he’d phone with the results. But when we went to book it all, we said I couldn’t do the scan until I’m back from uni. The first day I’ll be back for is the 19th. The scan is the first slot they have on the morning of the 20th of December. That’s… A lot quicker than I was expecting them to arrange it.

My mum and I then went for lunch, because she said that this time I had been “ok-ish” to have around. I didn’t want to go back – the whole way there I was dreading it, and she didn’t really want me to leave either I think. It was nice. We stopped at a random pub chain and ate some super nice chicken. And then we drove back to Mile End. And I was in this car that I knew was about to drive right back to exactly where I wanted to be, but that I wasn’t going to be in it when it got there. My mum pulled up outside my accommodation, got my stuff out of the car, we said a brief goodbye, and then she was gone. I hate that there’s nowhere to stop where I live. Goodbyes aren’t proper.

I went back to my room, let the door swing shut behind me and… Sobbed. I just sobbed. Uncontrollably. The room was so isolated. So… Not a family home.

And then my mum called to tell me I’d forgotten something, and I couldn’t stand speaking to her because I just wanted to go back to my dog and stuff. Same Cardiologist Uni Friend called me up and talked to me for a few hours. My plan was not to talk about my stupid nose until I know about it for sure and stuff. Oddly, I’m not phased by the thought of surgery or anything. I thought I would be or should be, but y’know… I don’t know whether it’s because I feel so ridiculous about it being my nose or whatever, but this one just doesn’t feel like something to sweat over. If the lump is harmless or has the potential to stop being harmless or if it isn’t harmless at all, the treatment is the same – get it out. I’m up for that – just get the thing out. It’s annoying, more than anything.

But anyway I was crying and I was like I don’t think I can do this. I didn’t know how to deal with anything, even for a day. I ended up almost falling asleep on the phone to my friend, and saying stuff that made no sense because I was falling asleep, so I let her go and cook her dinner and curled up fully clothed to go to sleep. My sleep was broken, it always is, but if you discount the 17-18 times I woke up or got up to treat my health hiccups, I slept from 7pm round to 9am. I was so tired.

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I did find time to tidy up and try to make my room look a little Christmassy. It isn’t much but it’s the best I could do.

And then I went to my hospital appointment. And as I sat there by the Christmas tree waiting to go in, I checked my uni emails, for some reason. And they are STILL trying to find ways to kick me out. Except this one may work, but is also ridiculous. They are getting the national crediting body (external to the university) involved, because I missed lab sessions so they are saying I might not have demonstrated the lab skills needed to become credited as a biomedical scientist. So many thoughts. Firstly, we do the same procedures in every lab – spectrophotometry, micropipettes, serial dilutions… It’s basically the same. The labs I’ve missed… Some were on the computer, one the theory was done at home… I’ve done all the skills before. To death and back. In fact, I’ve probably carried them out while literally dying. Secondly, there are people on our course who have never been to a single lab because they can’t be bothered. A couple of weeks ago, someone asked us where we are meant to submit lab reports to and how we went about it, because, half way through the first semester of his SECOND year, he had NEVER been to a lab session. Thirdly, why did nobody tell me that at the end of first year?

As if that appointment wasn’t bad enough.

I walked in, and we started talking. And she told me this story about this boy who didn’t look after his diabetes and didn’t think it would kill him but was warned and warned, and then died. Except she didn’t tell it like that. It was more emotive. And I was like… I have so many things to be scared of. And I told her about my heart being more of a pain in the butt, and my kidneys being a pain in the butt, and how I hadn’t told anyone about either of those things. But somewhere before that, or maybe during it, I just broke down. I don’t cry. If I do, it isn’t in front of people. It certainly isn’t in front of health professionals. And I just couldn’t stop. I will elaborate on why and what I said at a later stage. But out 45 minute appointment ended up going on for over 3 hours. She pulled her chair out from behind the desk and moved it so our knees were almost touching, and she leaned forward and we just talked. About it all. About all the things I couldn’t face. About how screwed my body was. About what triggered my PTSD. About where I wanted to go (in terms of a treatment plan or whatever) and all I could say was I don’t want this any more. I don’t know how to deal with it all, I just can’t cope. And she’d stop, and we’d go back, and we’d go through a whole other thing like my weight loss or fluid retention or mental health or whatever else until we ended up right back at that point. She was patient.

Anyway. I got to uni campus at 2 and sat with Same Cardiologist Uni Friend and Italian Uni Friend (two people then knew I was back, which hadn’t been my plan). I had an assignment due in at 5 that I hadn’t started. I got quite a way in, and then my computer restarted and I lost even the stuff I had saved. Life isn’t giving me lemons, it is squeezing them in my cuts. It felt pointless anyway, in light of everything else on my plate, especially as all this work may literally be for nothing now.

I concluded that the only state in which to submit my assignment would be on fire… Because that way it could never be marked, and I’d save everyone else by destroying theirs too. I was just over half way through when the fire alarm went off. I sat there with less than an hour to go and 1/4 of the thing still to do like well at least if I burn to death they might go a little easier on me. 

I was trying to care, and it just didn’t matter. Until eventually I started to focus on it instead of the everything else in my life, and putting the tiny amount of importance I could spare onto my coursework distracted me as we watched a guy try to turn his canal boat and have a crash in Regents Canal (right by the window).

I finished the thing on time. Same Cardiologist Uni Friend had to print it on her account because I forgot my student card. Italian Uni Friend had to  staple it because I couldn’t get into the library. I submitted the thing, and then I stood in the middle of the emptying science building, held my arms up in victory, looked up through the opening in the ceiling of the lobby that showed the first floor lab, and just shouted (completely out of the blue, taking myself by surprise)

“BITE ME”

Then three of us went to Stratford Westfields, where I bought a large meal in McDonalds, accompanied by a free Crunchie McFlurry (because student perks)  after I realised I hadn’t eaten all day and it was 6pm and I felt I needed something good after my day (not going to lie that’s the only reason I went). It was so cold out and I had only left the house wearing a jumper, so by the time we got there I couldn’t feel most of myself, my hands seemed to have so little blood in them they looked rather alarmingly alien, I was shivering violently, and got electric shock pains in my legs if I moved them beyond a certain point… So I bought a super cheap ski jacket… And 2 jumpers… And a Christmas jumper (all for under the price of a jumper in any other shop).

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Christmas at Stratford Westfields shopping centre. Maybe I should make it my aim to see a different part of London at Christmas time every day…?

I went Christmas shopping and got three things for my little brother to make up for not getting him a birthday present. I bought myself a book entitled Death by Stupidity – 1001 of the most astonishingly bizarre ways to bite the dust because I wanted to feel better about the fact that I’d nearly died a lot and… It hadn’t been in ridiculous ways. It’s a pretty funny book (also, people die in really, rally stupid ways).

And then, because I felt like it, I bought myself a second dinner – an AMAZING pizza.

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Only two slices of this beautiful thing made it all the way back to my flat.

And now this post, that I mostly wrote on the other side of midnight, but that will now be posted today and probably make no sense (just imagine that every “today” is actually “yesterday” i.e. the 1st of December).

Tomorrow lectures, then straight to another hospital appointment, then straight to an assessed lab session, which means I’ll have another bit of coursework due in another week. One of my friends is already fully into a revision plan already. Everyone else I talk to only has a maximum of 7 weeks of notes (and that person was only that far in for two modules out of four). Everyone is as behind as me (I have notes in lectures until about week 5, handwritten final notes for… Week 1). And they’ve been out in the real world living life, so that makes me feel a bit better.

Whoa this is way too long. I’ll stop. Bye. I mean, it wasn’t even that bad. It’s just been full on, especially with starting to feel a little bit.

Time for another dinner. At 00:20am. Like I said, bite me.

Inferno

“Anhedonia: The loss of interest and enjoyment in all activities that you once liked; the feeling of not caring anymore.” – Neurolove

In order to write the essay we were set by the medical school, I had to switch my brain on. I didn’t even need it to engage in university stuff, I was willing to settle for it engaging in anything, because then I’d have something to work with and focus and redirect.

I tried to engage my brain in essay writing, in anything at all; but in the fleeting moments that it would engage, the only thing it would latch onto was this aching conclusion that my existence needed to stop – without any of the thought before it or any of the usual emotional build up, I was at the final destination. I didn’t even want to take my own life, that isn’t what I wanted at all. My brain was just in crisis, not even crumbling on itself because it was never whole enough to do that, but it just didn’t want to do it any more. It wanted to die without dying. For no reason at all. And when I went back to feeling dead again, knew that I didn’t mean that at all. And when I feel proper emotion again, I’ll want to live so much that I’ll be crippled by the fear that I could so easily cease to do just that… And I will want some control from somewhere as doctors get involved in my life again and take all the control away from me, inducing mass panic. So y’know. It wasn’t helpful. Because I was trying to essay and swinging wildly between complete apathy and an overwhelming desperation to please just not exist any more.

The stupid essay doesn’t matter to me. It means nothing at all. It will be forgotten as soon as it is completed. It adds nothing to my life. It earns me a percentage on a piece of paper, or a latter grade. That’s it. And that isn’t what matters. When I’m laying in the ICU again that essay will mean less than nothing to me – the attention I give to it (when I can find it) will be a regret. Because I will have perspective and I will hate the fact that I lost that perspective enough to pin so much onto an essay.

I wrote that last night.

And then I woke up today. And things were different.

In three hours I was more productive than I have been in the entire last three weeks. I wasn’t enthusiastic or particularly engaged, but I managed to find a small amount of focus from somewhere. I found over 20 references and made notes from them all, writing down relevant parts in sections I’d made in my notebook so that when I came to writing the essay I just had to join the dots between the points basically. And I did more work then, in that short attempt, than I have for ages. I kind of got a little bit interested (and I mean a tiny, brief little flicker) in the use of beta blockers to treat cancer, and went off on a tangent researching the role of stress hormones and the mechanisms in which they promote cancer development. It is a very long time since I’ve had even a flicker of interest in anything, so this is mildly reassuring I guess. And then I sat and looked at my word count of 0, and tried to think, and my mind had forgotten how to essay. It couldn’t think. I didn’t really know what to do. I tried to blog, but there was nothing in my brain to let out. It was just empty, hollow, dead. My dog was laid next to me asleep so I just hugged him.

“I wanted to write down
exactly what I felt
but somehow 
the paper stayed empty
and I could not have
described it any better”
-wtm

And then I started writing the stupid thing. One hour and 200 words and I was pretty surprised. I got a message from someone who I don’t want anything to do with at the moment due to their self-centredness and the way they make EVERYTHING a competition and always about them, even when they’re taking about you. I messaged my friend from uni who has the same cardiologist as me, and she said that my achievement was actually pretty decent, seeing as she’d managed 600 words in 3 days. At that point I lost the ability to essay, put on my wooly hat, and just sat staring at my screen for ages.

I don’t want to be writing about cancer at the minute. It’s ok when I’m totally a-emotional (I’ve decided that’s the perfect description for how I am right now), but when I do have emotions, it’s going to be so difficult if I start thinking about cancer. My dad’s ex-brother-in-law (who is referred to in our house as Unlce [dad’s ex-brother-in-law]) does have cancer. They got the biopsy results. A few weeks ago he got the all clear. Now, he’s still in intensive care with a tracheostomy but has been woken up. I feel like I shouldn’t even talk about this. But he’s such a nice guy. It’s in his voice box. They can’t do chemo or radiotherapy, they need to remove his trachea, he won’t breathe by himself again and he won’t be able to eat. Or talk, obviously. Life isn’t fair. It isn’t fair. It brought tears to my eyes when I heard. Which is weird. I think my emotions may have turned into ninjas, because I have these emotional responses (cry. I cry) without feeling anything at all behind it.

“Some days,

I feel everything at once.

Other days, I feel nothing at all.
I don’t know what’s worse:
Drowning beneath the waves
Or dying from the thirst.”
 – O.M

My dad has taken to doing this thing when I talk where he sighs in annoyance and visibly pulls a face or recoils a little and then looks away from me, makes some huge long pause and then talks, completely ignoring me. Or really curtly says “thank you” to shut me up. Not every time, but enough that I’ve noticed it and y’know… I’ve yet to have a feeling about it, but I’m sure whatever emotion it eventually throws up will be highly destructive.

This essay is due in tomorrow, except I have a hospital appointment in the morning and then from that my mum is taking me straight back to London, which I’m already starting to dread. I don’t want to leave my dog. My nephew is a complete narcissist. He was so rude and awful to my little brother last night I wanted to hit him (I’m super protective of my little brother, who wasn’t bothered). My mum is at her wits end over the way he treats her and lies all the time, he’s so rude and horrible to be around at the moment. My dad won’t discipline him at all because he worships him and wants to play good cop. It isn’t fair on my mum, who really cannot handle it but said that on the phone to my sister and said the opposite to me. I can’t handle this house. This essay can just go do one. Could cancer please just leave Uncle not my uncle alone? How, after hearing that, can I possibly give a crap about this essay? How? I should be freaking about going to a hospital appointment tomorrow and even that isn’t making me feel anything. And just as a tiny whip of emotion is ignited within me, I’m about to leave my dog and go back to the loneliness that broke me before I had any reason to break (I don’t have any reason to be broken now but…).

Basically I just want to set myself on fire, because I’m already watching the world as I know it burn.

I feel like I’m in an inferno.