Where I’ve Been

It’s been so long since I posted on here that I almost forgot how the whole thing works. Mind you, my body has been through so much I have forgotten an awful lot.

When I last posted on here, I had just got a puppy. I had torn a couple of tendons in my pacemaker shoulder, the discovery of which made me stop trying to get someone to listen to my fears that my pacemaker was infected. I’d been told it would be dealt with, told they were on it, and neither of these things were true. Until my puppy was home, and I became critically ill. 5 paramedics, a blue light ride, a swift transfer to the heart centre… where I was left in a bed for 4 days with sepsis. I was left until my kidneys were giving up, I was in acute respiratory failure with ARDS, couldn’t even talk or maintain anywhere near a normal oxygen saturation, and was mostly unconscious. They told me something would be done early the next week, and I accepted that I was going to die that weekend. I didn’t, because one doctor freaked out at my condition, and I was put in a medically induced coma, the pacemaker causing the sepsis and endocarditis was removed, and I woke up 12kg heavier (retained A LOT of fluid), intubated, and lucky to be alive. I woke up just before Christmas, and was moved back to the CCU where I knew everyone.

I lost a lot of muscle mass in the ICU, and the sepsis hit me hard (I have been left with lasting and significant effects). I couldn’t hold my head up, couldn’t even lift my limbs. I had to learn to walk again, which took months. One physio would have to take each leg, because if I tried to hold myself up my legs would buckle. I had lost all muscle memory. I still can’t do stairs. I still can’t walk far at all, and I still don’t walk normally. I will be in a wheelchair for many months more.

The infection hung around for a very long time, so long that they gave up trying to clear it and decided to do the open heart surgery I was waiting for whilst I still had the infection, so that they could remove the also infected temporary pacemaker that was taped to the outside of my chest. I had a thoracotomy on Valentine’s Day, and they inserted an epicardial pacemaker so I also had a wound in my stomach. I have a ridiculous pain threshold – I’ve walked around with broken bones for weeks, I have constant nerve pain, it takes a lot to make me flinch… for the first time I recall, I cried in pain. I writhed in the bed. I was told it was THE most painful surgical procedure, and all I’d been prescribed were lower doses of morphine than those my body was used to, and IV paracetamol. I also couldn’t stop vomiting, which really really hurts when you’ve just had someone slice your side and stomach.

On the 4th of March I was sat there talking to my nurse, she left the room and I just felt like death. I pressed the buzzer and she hadn’t even got far away so she came back. I couldn’t move. I was stuck sitting on the edge of the bed. I was sweating profusely all over, I felt so so weak, I felt like I had sepsis again in terms of how unwell I was. I thought I was dying. Overnight, breathing got more and more difficult, and my breaths became shallow and laboured. I had pain above my abdominal wound, and I couldn’t talk. The consultant came to see me before ward round. Doctors were constantly in and out of my room. I couldn’t move. I couldn’t talk. My arms and legs were YELLOW – I had no capillary refill at all, my limbs looked like those of the cadavers I’ve worked with in anatomy sessions before. But my temperature was fine, despite my icy limbs. I went for an ultrasound of my abdomen which showed nothing. I was about to leave, and the scanner dude had put everything away, but I knew something wasn’t right. When I asked him to scan again, and this time higher, crept just above my diaphragm with the prove and asked me if my pleural effusion had always been infected (I’d had a large collection of CLEAR fluid around my left lung since my surgery). I said it hadn’t. So he added that into his report and the doctors ordered a chest x-ray. I had no left lung. My trachea was bent and being pushed over towards the right side of my chest. The entire of my left thoracic cavity was white.

They took a sample to culture whatever bacteria had colonised the fluid. And when the doctor drew back everyone stopped talking. It was blood. I was too unwell to take for surgery – the thoracic surgeon wanted to but anaesthetics wouldn’t put me to sleep with a deviated trachea and only one lung. So they put in a chest drain. In 5 minutes, 1 litre filled the drain, so they shut it off. In total we drained off 3.5 litres of blood. There are around 4.5 litres of blood in someone my size. My limbs were yellowish white (rather than purple) because they didn’t contain poorly oxygenated blood, they contained virtually NO blood. I was given some blood transfusions (and obviously a lot of oxygen), and immediately became a better colour. On my birthday, my little CCU family celebrated with me. The doctors put their money together and got me a really fancy cake, and the entire ward piled around my bedside to sing happy birthday to me and my chest drain. I had a CT scan. It showed a HUGE clot left in my chest, taking up around 1/3 of the space where my lung should be. I was finally stable enough for surgery, so that happened.

A week after that, I had another surgery at a different hospital. I was transferred back to the heart centre to be discharged, and got frustrated at waiting. I hadn’t let myself look forward to the date of discharge until it came around, and I was so eager to get out. I couldn’t believe my moment was there.

The consultant on the ward that week (now my consultant managing my care at my request) came and sat on my bed. She told me there was bad news. I thought she was going to say that my infection markers hadn’t dropped any more since the surgery, and that I needed more antibiotics. Instead she told me I needed another open heart surgery thanks to a very rare complication, one I had actually felt occur the day before – I’d told them something felt different, and they had done the necessary tests but not told me the results until they knew how to find the words and had some sort of plan. I just kept saying “I don’t know what to do” because I didn’t – I had no idea what to say, what to feel, what to do. And then I told her I was smiling because if I didn’t smile I would cry, swiftly followed by “oh wait I might be about to do both” and then the inevitable tears. She cried with me. That validated my emotions – if it was bad enough for someone who sees serious illness and heart stuff every day to cry in front of me, I felt less bad about being pathetic.

A week later, on the 29th of March, a really really lovely cardiac surgeon sawed through my sternum (different route in this time, seeing as the previous way clearly hadn’t worked and we were going for a different approach). The anaesthetic team knew me by name even though they had never met me, which was alarming because that’s not the kind of situation where you want people to be like “omg YOU’RE (me)!” The cardiac physiologist I have seen since I was in secondary school was in the anaesthetic room with me, and he was going to be in charge of my pacemaker. I woke up in the ICU. The sternotomy was the least painful of the three major thoracic surgeries I had.

After 110 days in hospital I went home. After 145 days away from my puppy, we were reunited. I am not whole. I am traumatised. I am broken. I feel like I have a very bad flu because of post-sepsis syndrome (also have significantly reduced cognition, debilitating fatigue, weakness…). I am still very unwell, and my left lung doesn’t seem to have any breath sounds, which might explain why I am always so breathless. I apologised for my consultant for not pushing myself hard enough, and she broke down everything that has happened to my body in those 110 days (systemic inflammatory response, ARDS [acute respiratory failure], lung injury, musculoskeletal injury of being in bed for 4 months, orthopaedic and musculoskeletal injury of sternotomy, abdominal surgery, pneumonia, lung injury, a 3.5 litre bleed that almost killed me, the infection my body fought for around 12 weeks, damage to my stomach/the nerves supplying it that has led to gastroparesis, nausea, vomiting… the list went on and on and on). She told me I’m not pathetic. I have survived an ordeal not many could.

Except, I did not survive.

I will never be who I was again. I cannot live alone. I have to be carried upstairs by my little brother. I cannot cook for myself. I can’t study. I have had to leave my flat and my masters degree course. I don’t know if that will ever change, neither does my consultant. But we hope I’ll get better than I am now. I’ve already improved so much in the weeks I have been home – I have built up to being able to wash and dress myself without help, only napping for a few hours in the day, standing up without any help, walking (well, my version of walking) to the kitchen and the bathroom instead of using the wheelchair, I can sit up unassisted… I just… I don’t feel like me. I don’t feel like I came home. And the PTSD… well, I’m having panic attacks for the first time in my life, and my mental health is more… mental rot.

All because I was left to get far, far sicker than I ever needed to (which numerous doctors have admitted, so much so that they asked if I could be mentioned at their morbidity and mortality meeting).


I just downloaded The Sims 4 for free, and I plan to just… try and create a version of me that is a little more capable, and live in an alternate world for a little bit. I don’t know what else to do.



I Don’t Know How

I am currently wearing a hospital gown (something I avoid at all costs because it makes me feel like a patient instead of a human being) having consented to the procedure I don’t know how to face. My veins are filled with EVIL IN IV FORM (so soon I’ll feel like death warmed up) and I’m waiting to be called to theatre. The clinical director is going to slice open my chest. Just your casual Thursday afternoon then.

What changed? I don’t know. After my last post I spoke to one of my best friends, and then my mum, and then I broke down to a level that was alarming. Never in my whole life have I cried like I did then. It took over almost like a physical thing and I couldn’t stop. I felt such an intense despair that I didn’t know how to human. But maybe when you sink far enough, you hit the seabed and find your feet again, lower than before but no longer sinking. I put in my headphones and listened because I didn’t know what else to do. Various artists played through my headphones, and the sound was kind of soothing; but then we hit the Bastille section of “perfection in a playlist” and I just… stopped. Everything stopped actually. I stopped melting down and felt the deadness settle in place of the despair. Utterly defeated, totally drained, nothing left to give and no me left in my brain but no longer bursting and breaking under a helpless and alarmed despair. This situation was more manageable, less distressing… and it allowed logic to prevail.

My nurse walked in as I sat there completely drained, and with Bastille still playing, I took a deep breath and (while kind of wincing) I hesitantly told him I’d go ahead with the procedure. Because I want to. Because I need to. I don’t know how to face it, but we all want it to happen. He smiled and gently asked if I’d let him give me EVIL IN IV FORM and in my moment of defeat I also agreed. A doctor walked in to take bloods. I sank inside but hid a headphone in one ear and played Pompeii on repeat. I’m not sure why that haunting song is so powerful, but I’m not going to question its effect on me. It helped. I sank inside. I held back tears, and I clung to those lyrics. This whole situation is an endless cycle, a stagnant disaster. Nothing is changing. We aren’t winning. The lyrics fitted that.

The doctor who came to consent me was not optimistic at all. He seemed to expect them to find the worst case scenario (because that’s the way things look), and explained that the decision to go ahead with this had not been made lightly and without the whole thing taking place ultimately I could end up dead. Luckily logic was still in charge, even though I crumbled inside and my brain tried to curl up and hide and it was far, far too much to deal with. 

He started explaining that they’d had a meeting and a few procudures had been cancelled so they could fit me in. I left my brain switched off, stayed dead inside to stop the tears that welled in my eyes from falling, focussed on the Bastille t-shirt at the end of my bed (it comes with me on every admission because I’ve decided that thing may have magical powers and actually I just love the artwork on it because it’s an awesome parrot design), didn’t let the whole “we may make a hole in your lung or your heart” talk freak me out, and only looked up to sign on a dotted line. 

I’m not doing this for me, I’m doing it for my family and friends and for the people who I may be able to help by being well enough to carry out my plans to raise money for charity. I don’t know how I’m going to do this. I’m terrified. When I wake up I’m going to be in pain all over again and mentally I don’t know how to face the impact that has on my mind. I don’t know how to face putting my life in their hands and being unable to control what they do. 

I don’t know how I’m doing this, I feel the same way as before but it’s suppressed right now. And I just need to get through, for everyone else. 

The situation with my physical health is like a boulder rolling down a hill behind me. It’s gathering speed, it’s going to flatten me. I can’t jump out of the way and my brain’s reaction seems to have been to curl up in a ball and dig a hole in hopes of being less flattened by what is about to happen. But for some reason right now, and I’ve no idea how, it values the people that care about it (and the people it could raise money to help) enough to get up and run for my life, to make efforts to prevent the worst case scenario from occurring. Who knows if we’ll be fast enough? But these doctors are doing their best. They have thrown everything at that boulder to try and smash it, thrown me lifelines that snap as soon as they begin to pull, and after today I may or may not have to have a general anaesthetic in a week or two in which they’ll try to break the boulder again. We’ll know for sure after this little procedure. 

My brain has stopped trying to pedal its way through and abandoned the bike with the slipping chain. It’s running. It’s letting these people fight for it and surrendering itself to the unpleasantness that it knows will leave me mentally spent. It’s running on broken legs, but it’s running.  I don’t know how.

And I don’t need to. I just need to not get caught. One foot in front of the other until the danger passes. And hopefully no more bad news – there’s been too much of that. 

No way but through.

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.

3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.


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.

Winging It

I saved my own life again. Waited for a doctor to show up and take a blood gas as my acidic bodies were almost triple the acceptable limit, and this time no doctor ever showed up. But I did. My brain did. Exhausted from a sleepless night the night before, I was forced to repeat my actions. But I missed some doses. When my bloods were checked in the morning, they were outside of normal range, but almost there. That was good for me. My bloods will at best sit slightly out of normal range, unless you pump me full of so many IVs that the tree of my central line has this many branches (if you don’t want to see a picture of a central line… run away immediately).

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Meet Forrest the central line. Yes, he is no longer in me. More on that in a moment. Saving the best parts until the end. The dark blue bit in the middle is where he was stitched to me – anything below that is part of the tree that ran down the length of my entire thigh, all of the light blue bit was… In my venous system.

Dr Survival came to see me. I pleaded a little. I’d been winging it, with restricted access to the medications I needed to properly fix things. Additionally, although I lack any ability to feel stress at the minute, my subconscious clearly has been, because on the occasions I managed to drift to sleep, I woke drenched in sweat to the point that I had to change. I said I could wing it at home, and he made it very clear that it would be a case of “winging it” – hoping. I am even more unstable than usual, and I am usually told that each day I play Russian Roulette with my life (legitimately been told this way too many times) so… I have to be on it. But it seems safer for me to be on it than they do. In the words of the registrar who found out I was studying biomedical science (or, as he called it “Ah, medicine in far more detail than the medics” because he’s studied both that and medicine at the same university as me) – I have an understanding of myself and how to help myself far superior to any doctor that hasn’t been fully immersed in the complexities of my case.

I pointed out that they had done nothing, that without the knowledge stored inside of my brain, last December would have happened again. If I hadn’t learned to keep injections and needles hidden around my person and in the lining of bags, I would have been left with it all locked beside me, powerless to save me, and I probably would be dead, or at least back in critical care. Dr Survival looked at me. He knows me, because we’ve encountered each other enough. He was happy with bloods that in anyone else would make alarm bells ring and probably get them admitted. He told me I’d have to be in regular contact with my specialist community nurse, who had been messaging and calling me every day anyway. And he said I could go. At 10am yesterday, he told me I could go.

But things move slowly. Nobody wanted to remove the femoral line until right before I left, and some people were unaware that I even had it. So naturally, I took it for a walk to McDonalds (or as far as the staff are concerned, “the main entrance” – what they don’t know can’t hurt them… Although the sister totally knew) with my new hospital friend. We wanted edible food, because lunch was supposed to be fish but honestly just looked like white vomit. And I needed out. If the whole duration of being there is hard enough, the last few hours are so much more difficult because anticipation joins the show.

On the way back, I stopped at the Air Ambulance shop. The London Air Ambulance is based on the roof of this hospital, and whenever I’m admitted I sit by my window and watch/listen to it take off multiple times a day.

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The window. Not a bad view
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I just lay here and stare out at the helicopter until it becomes a dot so small I can’t see it any more. 

Walking down the road I see it sat on the roof of the hospital. Whenever I see it, I stop and hope for whoever they are going to. In the resuscitation unit I have seen the people they bring in, met the doctors who work on the helicopter when they’re working shifts in the resuscitation unit instead of in the air and have to deal with me because my body is being such an idiot. And I always wanted to help out. Buying a tiny thing didn’t feel enough, but that moment it was all I could do. I didn’t have much money, but I figured they needed it more.

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The guy opposite me in the critical care unit had been brought in by the air ambulance, and it just becomes a constant to my hospital life, so I wanted to support the amazing work they do, and I got a cuddly helicopter out of it so… (some day I’ll raise a proper amount of money for them)
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A second or two after I took this photo, the actual air ambulance took off and flew over the top of it. 

It was half 5 by the time I was discharged. No bloods were ever repeated, not even blood sugars (keep in mind that I have type 1 diabetes, so my blood sugar has to be tightly controlled – but never is, due to other stuff). The irresponsibility should have been shocking, but I was all dead inside, so I just waited for the nursing ward manager – who had until that point always seemed offish and abrupt – to remove Forrest the central line. She removed it and told me stories of when she worked in A&E, and she said it was in a really, really weird place. I said it was because they couldn’t get one in due to scarring, and her response was simply, clearly. People were really nice to me, even the receptionist who I’ve never spoken to but who, like everyone else there, knows my name and stuff. The ward manager eventually returned with my discharge letter (they told me to wait for an hour after Forrest had been removed, but I got up and walked around five minutes later because I didn’t care if it bled or not because I don’t care right now), and gave it to the receptionist to give to my nurse so she could pass it to me. The doctor that went to my uni took it out of her hand and just passed it straight to me. It was taken back out of my hand by the nursing ward manager and discussed with me. She gave me a couple of dressings and my mum had appeared.

I managed to piss my mum off almost instantly. She started telling me that I was doing the wrong thing to miss uni and she shook her head and looked all disapproving and said I was only making problems for myself. She wanted me to tell her what I was doing with my life for the next few days and talk about uni work and what I’d missed and what I was doing. And I was dead inside. Just dead. And I’d tried to tell her but like every other healthy person I told she just hadn’t understood. She doesn’t understand any of me. And I tried to tell her I didn’t care because I couldn’t care – I was dead. And then she got cross and said that she was just a taxi service in my eyes.

I went back home to my flat. I grabbed stuff, I ditched stuff. I went into a small shop with my mum on the way back and paid for the stuff she wanted to make dinner with. I bought chicken and potatoes and stir fry for the family of 4 that live in the house I never feel like part of (so I bought food for 5). I bought my mum a drink, and myself some food for the next few days because they don’t like me eating all theirs, and I bought a smoked salmon bagel to eat on the way home. I fell asleep in the car. I woke drenched in sweat, not remembering the nightmare, but knowing it had happened.

We got back. My dog ran at me. I felt nothing. He was so, so happy. He wouldn’t leave me alone. Normally I shower him in affection and am so busy feeling all the feels that I don’t gage his response to my presence and think he’s not too fussed. He was persistent. He wouldn’t leave my side. Every time I sat down he was on my lap, crawling onto me as much as he could, tail thumping, head nuzzling into my neck and nudging my chin. And I felt nothing. He is my everything, and I was so dead inside that he meant nothing. And when I start to feel again, that’s going to hurt like hell. He was so, so happy. For hours he was bouncing around me, his hips clicking which usually makes him stop and curl up in a ball of ouch. I sat and tried to hug him back, but I couldn’t feel. He eventually curled up on the sofa with me and fell asleep staring up into my eyes. If I could feel, I would have felt evil.

I showered immediately. Scrubbed over and over again until the smell of hospitals was gone. I sat on a bed with a non-plastic mattress and a thick quilt and it felt better than anything I’d sat on for a week. I ate food. I had dinner, and then chicken gyoza, and then 1/4 of an apple pie that I found in the fridge (with some ice cream), and then a fishcake, and then vegetable spring rolls, then prawn parcel things, then crisps (I bought everything apart from the crisps and the apple pie & ice cream). I was hungry. I hadn’t had proper food for a week. The weight in my stomach is water weight because my kidneys seem to still be rather upset, but I can tell by the prominence of my cheek bones that I’ve shed weight I couldn’t afford to lose. I don’t care right now though, so I watched the first episode of The Grand Tour (which I’m pretty sure wasn’t meant to be available when I watched it, but I’ve been waiting MONTHS for it to start up) until I fell asleep.

I didn’t tell any of my friends that I’d left the hospital. I messaged my new hospital friend because she understood, but nobody else. I couldn’t. There was a wall there I couldn’t overcome. I’d also shot myself in the foot that morning in the group chat. Uni Pal was trying to be all motivational. I was trying to explain how bad my mental health is right now, and she started telling me I’m such a fighter and I’ll get through it because I always do. And my brain was empty, but my subconscious was all asdfghjkl. And I said no seriously stop it and nobody spoke from that point onwards, which again, when I can feel, will make me feel like an utter dick.

Because let me tell you this. I have no fight left to give, but that isn’t going to stop life taking more of it our of me. And all people see is this transition of fighting passing from me to life, they see life taking it from me, and they assume that it was given. They assume I found the strength to hand it over, and do not understand that life is stealing pieces of me that I cannot function without. And I pretend everything is fine. I carry on. I don’t talk. So when I turn around and say that I am in a state, it means I am pretty much in the middle of a breakdown. And I know she was only trying to help, trying to pick me back up, but she wasn’t listening. It undermined what I was saying. It made it seem like I wasn’t ever allowed to fall apart. I can’t explain what it’s like to be so strong in the eyes of someone that you NEED to see your vulnerability in that moment so they can be there for you in a way that you need. And so I shut down more then.

I’m also done with medical teams. In hospital, I leaned on my specialist nurse a lot. I used her in a way I am always meant to have done. Things were a little easier. Then staff errors nearly killed me again, and I got out, and the need for her left. And I don’t want to engage. I did it myself.

I was caught off guard just now when a district nurse showed up on my parents’ doorstep to check up on me, having been contacted by the London hospital I just left. Pretty impressive, seeing as I’m in Kent and the address they have for me is in Mile End. I wouldn’t let her look at my central line site. I briefly said I didn’t even have an emotional reaction to the sight of my dog, and she said he was all over me and clearly determined to shower me with affection no matter what.

But I am currently incapable of loving the only thing in the world that I love.

What have I become?

I’ve cut everyone out. Health teams, friends (except hospital friends) everyone that I should need but just can’t deal with right now. I don’t even know when I did, I just realised writing this that I’ve closed off again. In so, so many ways, I’m winging it.

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Life is so much safer on the other side of this window. I am so much safer on the other side of this window. 

But Hey, 5am Bagels

We pulled an all-nighter. I had to, because I was sneaking medication to keep myself alive. I’d been in the early stages of a medical emergency that a doctor was meant to return 30 minutes later to re-assess by repeating my bloods (and see whether my pH had dropped any lower than 7.35, which it looked like it should because the acidic bodies in my blood were almost 10 times the highest acceptable safe limit, and above the threshold for acidosis, in which case I need urgent IV treatment to prevent… death). The doctor actually turned up six hours later, arrived, didn’t take any blood, seemed totally blasé about the entire thing, and then left the ward saying he’d be back after an hour or two… After I had to remind him of the science behind acidosis, the stuff which he was measuring, the results I’d had, and how it even worked (only slightly more alarming – if I could feel anything and therefore even be alarmed – than the fact that the nursing staff were judging and blaming me and saying my pH was dropping because drinking multiple litres every hour apparently isn’t enough to maintain a normal pH).

Good job I ignored them all and self medicated on a sort of autopilot that saved my ass, because this guy was lazy and clueless and as apathetic as I am right now. (Trigger warning) Also totally bad for them, because I then decided it was pointless being in hospital as I’d saved my own ass, and decided that I’m refusing all IVs even if they are adamant that they want me to have them, because hey, I made a decision. My brain made a judgement call. It didn’t care about whether it lived or died any more, it wanted to wing it. And if this body can do it, cool. And if it can’t, cool. Either way this admission ends. Soon. Today. And maybe I even get to live again a little bit. I don’t think I want to be dead, I think my brain is just sick of living like this at the moment, and it wants it to stop, and if the end means it stops, I don’t care enough about anything to care if that’s how it has to stop. The end seems like a way through this.

Anyway, my new friend and I stayed up all night talking and she tried to sort my life out and get me to draft an email to send to my personal tutor at university. We ended up just chatting. Then we ended up with her in agony and me feeling like death and both of us not knowing how to carry on, and then the pair of us fantasising about Brick Lane bagels. This led to us deciding to go on a quest for bagels at 5am in order to plaster this huge layer of awesome over the fact that both of us had just told the other that dark thoughts were looming. I was all ready to break out of hospital with my femoral line still in and get in the taxi to Brick Lane to buy said bagels, but then we realised that one of us needed to stay on the ward to sneak the other back in. So I stayed. And my new surrogate older sister snuck out of the ward, got in a taxi, and bought us both a super early breakfast from the 24 hour bagel place in Brick Lane. That’s the kind of stuff hospital friends do together – form highly irresponsible double acts and do super stupid stuff just to rebel, just to try and feel alive again. We earn such privileges as breaking every single rule and sneaking out with in-dwelling central venous catheters, even if we end up staying on the ward.

Walking to the ward doors to let my new friend back onto the ward with her bagel delivery was the first time I’ve walked more than a few metres (and even then only to get to the bathroom in a very wobbly fashion) in the last 6 days. And I tell you, a smoked salmon bagel has never tasted so decent. At 5:40am. As I sat and watched the fog finally win it’s 4 hour fight to obscure The Shard from view. I didn’t even care what the staff said or thought. I instructed Einstein (my new insulin pump that I got on Monday) to give me a huge bolus of insulin, and I listened to the rain, and I thought that if I was capable of having a mood then the foggy, rainy weather would totally match it in that moment. And I let go. I let it all go. I let my last shred of anything evaporate from the void my mind has now become. And I crumpled quietly in on myself, the sagging walls of my mind supported by nothing other than their adjoining neighbours as it all sort of sighed and deflated like a burst bouncy castle. And we still had no update on my acidosis status, about whether it had progressed or whether I’d saved that doctor’s ass by saving myself with ridiculous levels of hydration and dosages of medication that nobody will ever know about, and that to be honest I made up as I injected. I sat with heart palpitations (probably due to screwy potassium levels) and a little chest pain, and who knows what going on in my blood, and grumpy kidneys that are letting protein and blood into my urine in a fun development that occurred yesterday morning (the cause behind which may have triggered the acidosis), and I finally just looked at my body and thought to it

Ok, do it. Do your thing. Do whatever you want. I’m not going to fight you any more. I don’t know how to. Do whatever on earth you want. Just hurry up and decide whatever that’s going to be. And then this life is all yours to take or leave or maintain or end.

If I could feel anything right now, it would be fear. I think. A helpless, desperate, pure, uncertain… fear. Completely overwhelmed and intimidated too, I guess.

But I still.



This. These last few posts. This is what a lifetime of hospitals can do. This is the side you don’t see in films and books and stuff. It’s a side people in hospital always think they’re less because of (or alone in) feeling, because it’s a side that is rarely shown to the big wide healthy world. But when you get us together, and you let us talk, sometimes we find other people who feel exactly the same, and then there’s less shame and feelings of ridiculousness. And just this reality that neither of you knows how to face.

No more of this.

No more.

Things change today. One way or another.

I can’t be here any more.

I can’t do it.

But hey, 5am bagels.


“Woke Up Hurting”

Yesterday I broke in a way I have never broken before.

I was so dead inside I couldn’t even find it within myself to long for death.

I was so empty and hurt, that when WR Uni Friend showed up, I couldn’t feign interest in conversation, I could barely reply. My words were monotonous, my replies brief and preceded by long pauses in which I fell apart and pulled myself together but never really succeeded in doing so, and tried not to cry so hard that it almost hurt as I just crumbled around myself trying to clutch at enough of a thought to think of how I was supposed to respond. She sat and I couldn’t deal with the sight of her normality, the way she tried to tell me about her day and engage me in normal conversation, the way she could smile and sit there and say she was stressed to breaking point over uni when I was stressed beyond breaking over things none of my friends can comprehend. The way she asked me if something had happened (after I’d explained to her so many times about why hospitals are such a traumatic environment for me, and after she knew about the old man beside me dying – which my friend, a consultant anaesthetist who came to sit with me for a while, found so distressing to hear he wouldn’t let me talk about it), which made me feel so misunderstood, and so disconnected, and therefore melt down even more inside my own head. I couldn’t even explain. I literally couldn’t words. And I couldn’t stand even the thought of letting myself cry, yet holding it in was so much effort I felt I might burst.

It isn’t the being in hospital at this exact moment that is the hardest part to deal with. Yes I have all the usual PTSD stuff, and the distress of being here is leaving me in permanent panic and freak out mode. And yes, that pushed me to near breaking point, but it isn’t what broke me. It’s the knowledge that this isn’t the last time – that I can’t cope, and I can’t do this, and I am going to have to over and over and over again. And each time I’ll nearly die, and probably wish I had, and then regret that wish, and then fear the fact that it may come true, before starting all over again. It’s that I have nothing left to give, and I don’t know how to face another day of this admission, and that this admission won’t even fix things. Realistically, it will not be the last. It’s the fact that I’ve hit this wall, and there’s no reprieve, no rest, no pause. And I’m going to run into it over and over and over again. Except I can’t break any more. There’s nothing left to pick back up and that will not stop this happening over and over and over. Looking forward into the face of that… I can’t even. I cannot. Even. Even.

This admission was horrific. It would have been horrific for anyone, regardless of their mental state, but I was already beginning to reel and freak at the realisation that I had nothing left to give but no choice other than to let my health keep taking things. Emotionally, I couldn’t carry on. Before the pain and the screw ups and the torturous, multiple, over an hour long attempts to get in any sort of central or arterial line into vessels so scarred they would not co-operate. And then on top of that, people don’t understand my condition, even the diabetes. So I ended up pretty much making and then explaining my own treatment plan, correcting staff… Fighting. Having to fight with them so that their treatment would actually keep me alive, instead of messing things up with the sort of treatment they’d use for a not-at-all-complex individual. The fighting has been exhausting. Everybody tells me different things, there has been so much confusion today alone that I am confused. It resulted with me extremely unwell and in mild acidosis again due to the simple fact that nobody seemed to be able to talk and communicate the plan.

And I couldn’t care. I was beyond apathetic about every aspect of my life. I lost the ability to feel anything. I lost the ability to talk, to communicate, to think a coherent thought. I just couldn’t. I could not think forwards. I was lost in this vortex, this chaotic jumble that I could not unscramble. And at the same time, there was nothing in my brain. I was bursting at the seams and collapsing under the vacuum of my emotional emptiness all at the same time.

And then the lady opposite me spoke to me.

Usually when I’m in hospital, I’m either so unwell, so out of it, so distressed and eager to escape, or so vastly different in age from the people around me, that I become isolated and stuck in this bubble and don’t talk to anyone other than the staff. I had forgotten what it’s like to talk to other chronically ill people, other people who live in hospitals and nearly die a lot and understand exactly how you feel. Exactly. I have forgotten what it’s like to not be able to say anything other than yes. As someone just completely understands. I had forgotten because after losing a very close friend from hospital, I vowed never to do that again. But you form this bond, and it’s unlike anything I can describe.

You’re these two people thrown together in this super vulnerable state that none of your out of hospital friends really understand, and you end each other’s isolation, and in doing so send waves of relief across a bay between two hospital beds. You let out what needs to be let out. You say things that you wouldn’t to a healthy person, and you don’t feel stupid or isolated any more because someone understands, and someone agrees, and someone puts words to feelings you couldn’t in ways you never imagined anyone could or would. You find a lighthouse in the storm and you cling to it. You share deepest darkest secrets and deeply personal facts within less than an hour of knowing each other, because the freindships you make in a hospital aren’t normal – they are sped up, accelerated, within hours you reach a level of intimacy that would take years in the outside world. You save each other in a way medicine never could.

We sat Bonding over father issues at 1am. She gave me confidence to ask about a portacath again, and the longest, most helpful pep talk. To my surprise I seemed to help her a lot too, and she said that we were meant to meet, that this was meant to happen, and I think we’re both so glad that it did. She had moments of just holding her hands out in a way that was all THANK YOU OMG ASDFGHJKL YES, and she said nobody had ever hit the nail on the head or put things so correctly as I did. And I ended up feeling the same and being lost for words and just holding my arms up to the sky. And she was beaten, and she had all the guilt and the emotion that my healthy friends cannot understand, and she’s like 14 years older than me but instantly she felt like a sister. And she also felt like giving up, when I said I was beyond the point of being able to cope and just couldn’t even and didn’t know where to start, she got it too. And she said that she’d try if I promised to. And she said we both had to take baby steps. And then she sat for an hour helping me write a letter to my doctors, because she said that getting flustered and missing a lot of points or just discussing emotion behind them wasn’t going to help my case, and that the rational thought was there, so we should map it out so I could follow a clearly written thing when my brain freaked out and forgot.

“Let me be absolutely clear.

This is mine but I’ll let you in,

Gather round take a part of it, of me, of me

A wasted life seems to mean the most

But these seconds are valuable


Their medicine is killing me

Some pieces have gone missing” Nothing But Thieves, Emergency

She has been where I am now emotionally. She got it. She got the fear and the impact of staff attitudes and the screw ups that nearly kill you (because seriously they nearly killed me with that acidosis last night, and never came back to repeat the blood gas so they’re damn lucky I ignored their instructions not to listen to my specialist nurse and self-medicated in the end… And she got that it wasn’t this time that was the worst bit. She understood that it would make me freak out, but she got that it was the looking forward that was the worst, the fact that this is life now, that it will never, ever stop. And I ended up watching her convulse with pain in the early hours of the morning because of staff negligence leading o delayed and missed pain relief. But stuff like that is less difficult when someone agrees with and justifies your point.

I am not ok.

I can’t cope.

And I am not better.

But I now have the mobile number of someone who reminded me that hospital friends are the truest, best, most instant friends you’ll ever have. Because they aren’t friends. Instantly, they are family, they understand you in ways no healthy human ever could (through no fault of their own).

I have nothing left to lose.

Because I have nothing.

I am nothing.

There is nothing left.

I can’t focus on holding myself together and protecting myself because I’m too busy looking back for the pieces of me I need in order to survive mentally. And I can’t go back for the bits I lost but need in order to survive, because I am too busy trying to hold together the nothingness that is left, housing nothing in my skull but an emptiness, a void. No soul. No mind. No me.

“Daybreak comes with the devil’s hum

A carcass starts to breathe

Wakes one more time to try and find

A place to count its teeth

And scrub the cuts from yesterday’s

Hot scuffle in the street

Show me the door

I need somewhere to go



Woke up hurting


Not for the first time

I woke up hurting

Though I can’t quite say why” – Frightened Rabbit, Woke Up Hurting

Except, I can’t even hurt any more.




“Mum He’s Gone”

I feel like I owe some sort of post about what put me here. That seems irrelevant right now. Everything seems irrelevant right now, which probably makes this the worst sort of time for me to try and write a post and start untangling the past few days. I have a load of scattered facts and thoughts and observations peppered throughout the notes section of my phone, and I guess that can lead the way (warning – this may be hard to read, and deals with death). I don’t even really know why I’m writing this. Then again, I’m not sure why I’m doing anything at the moment. I don’t even care about university. Not the tiniest bit. I opened my laptop to find last week’s discharge summary still folded up between the screen and the keyboard, and lecture notes still on the screen. I didn’t want to type up anything, not even for something to do. There was nothing there – complete apathy at the sight of something that usually sends sparks of interest around my brain.

I spent my afternoon listening to a man die. I knew his name. I knew his face. I knew his family. He looked like my great-granddad. I’ve seen dead bodies before. I’ve sat on wards when there have been cardiac arrests, I’ve seen dead kids and babies during my time on children’s wards, and I’ve seen all sorts in resus. Maybe it was because I was already broken. Maybe it was because I’d been up until 4am crying, with a nurse who left me laying in bed sheets soaked in blood that had poured from my central line when it was left unscrewed for a few minutes and nobody noticed… But nothing has ever, ever affected me like this. Nothing could ever have prepared me for that process. The listening.

The laying there.

The “He’s not lasting long. Can we get him some morphine and let’s just erm…”

The “I think that’s all we can do really. He’s taken a significant turn for the worst. I would erm… Turn the alarms off. How long until the family can get here?”

The watching the doctors walk away, not even try, and hating the world, and wanting to scream at them to please get back in there and please, please intubate him again or try something.

The helplessness.

The watching his relatives filter in one by one.

The hissing of the machine stopping.

The sobbing as a voice struggles to say “I just want you to know I love you dad, you know that don’t you? We all love you.” Between tears.

The calm, older voice that says, “Ok. We’re all here. Ok. Ok. Ok. Ok. Ok. Ok. Ok… Ok… Ok… Ok.” And stays strong for everyone else.

And then

“I didn’t think it would be so quick.”

And the couple of relatives that can’t deal with it all rushing out from behind the curtains and wailing as if they’ve been stabbed, as they experience a pain I cannot imagine but that I want to take away.

And the “I’m glad it was so quick.” Of the one that just can’t cry, not then, not there.

And they just sat with him, on the other side of the curtain, telling him they loved him as my friends sat in a practical at university stressing over DNA sequences. It didn’t matter any more. I lay there and I cried with them. As I listened to him being read his last rites I prayed with them. I had no right to cry, no right to hurt, but along with that of my nurse, my heart broke as his stopped.

And all I can see is his face. All I can hear is that gurgle of a final hopeful breath that seeped from his lungs minutes after his heart stopped and reignited fresh hope in his distraught relatives’ hearts. I can see him laying in that bed for the last five days beside me, heaving in air, ripping out NG tubes and wires and everything in his confused state, refusing pureed macaroni cheese and improving and deteriorating over and over. And I try to think that it’s over now. That it wasn’t a life. That he was granted the wish I wished for so hard. And then I see him with his wife. And I hear the stories she told of him. And I remember that it was a simple surgery that gave him the chest infection that killed him. And I hate the world. Because it isn’t fair. And it isn’t ok. It isn’t ok. And I hope and pray that he can rest in peace. I hope that his suffering is over, that he didn’t know. They think his death was quick but it was slow and drawn out and I listened to him all day for hours before they showed up. Fading. Going. But they don’t need to know that. And I wish I didn’t.

My friends came to be with me. “Batman” brought me chips and sat while I slept an unfightable sleep and the man lay dying bedside me, but left before his family arrived. Uni babe and Uni Pal weren’t there when the man died but they stood on the other side of the curtain from his body after he’d gone. They brought me chips and a drink. Because I mentioned what was happening and they wanted to be there because they knew I was broken.

And now I have no sympathy for the living – not the sick and dying, but the living. The actual living. I have no sympathy for the friend that messaged me moaning about having a boring lecturer tomorrow. I don’t care. I don’t care about anything. I don’t care that I’m off of oxygen and got stepped down to my usual ward tonight. I don’t care that I got Einstein and Albert this morning or the huge conversation with my specialist nurse that was momentous at the time. I don’t care that I was/am leukopenic. I don’t care that I have the start of a UTI. I don’t care. I can’t care. I don’t even care enough to want to be dead any more. At some point I will explain it all. At some point I actually will write out all of the notes section on my phone. For now. I. I don’t know.

I don’t know any more.


Mum the old man next to me is dying

Mum they’ve given up they’re calling his family and turning everything off and I’m crying omg

They’ve just given up

I don’t even know him and this is killing me

And then came the anger at the world. The messages where I was furious because the whole situation was so helpless, and I sat there and cried for this man I never knew.

And then later,

Mum they’re all chanting a prayer for the man and now he’s being read his last rites and everyone is sobbing

And they’re going to turn everything off

His name is [his name]



ASDFGHJKL *a million crying faces*


Oh my god I can’t

I can’t even



Mum he’s gone