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.

 

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There’s someone I want you to meet…

If you’ve followed this blog for a while, you’ll know that my dog (an almost 13 year old Chocolate Labrador) has been my furry rock through all the awfulness – health wise and in my personal life –  I’ve faced (most of which hasn’t been mentioned on this blog). You may also know that I have for a long while hoped to someday get a service dog, not only for my physical health problems and PTSD, but because of the support and responsibility it would provide that might give me a reason to hold on. My life is falling apart at the minute. I’ve bounced in an out of hospital, had more heart surgery last month after spending 3 weeks in a heart centre (and going into arrhythmia, passing out, sustaining a severe concussion, and ending up with a GCS of 6 for several hours and lasting memory loss, co-ordination and cognitive issues). I’ve maybe got an infection in my pacemaker, or my heart is just being an idiot. I’ve torn a couple of tendons in my pacemaker shoulder – we don’t know if it was the surgery, or a pacemaker infection that spread, or what. My cardiology team are M.I.A and I don’t want to chase them any more.

My days are a swirl of suicidal ideation and… PUPPY CUDDLES. Click the link to meet Teddy.

I need somebody…

My feelings came home, and they brought with them all the big bad wolves I’d begun to optimistically think might no longer be scratching at the doors to my mind. Due to the deterioration in the state of my heart, I have spent a significant portion of today… unconscious. I have spent the rest of the day with my head buried into a balled up blanket and music playing very very loudly… because I can’t stand to see or hear myself crying, and today I have SOBBED – raw and ugly and uncontrollably until it was too much for my heart and I’d pass out right were I sat.

When people don’t know what to say, they just don’t (my mother included). When people don’t know what to do, they don’t do anything. When people aren’t sure how to be there, they run. It’s like a reflex, a natural protective mechanism that often occurs without complex thought. I don’t blame people at all but my goodness do I miss them. They don’t have to change the way they act with me because of a rebellious organ, they are the normal I am so desperate to maintain and normal conversation and interaction makes things so much more manageable. Things are tough at the minute, without the network of people I’d found a home in suddenly retreating like rats fleeing a sinking ship. I totally get the instinctive recoil. It’s natural to run from a lit fuse. But it was the loneliness that broke me today, the lack of any sense of normality because I didn’t have anyone just to chat to, and my own mother didn’t have time to listen because of work. That isolation was the first feeling to sneak behind the wall of my apathy, and once the dam was breached, the emotional pain was so intense it was almost physical. My body can do whatever it likes, as long as there’s a life left to lose if it fails. Lose the people that matter, lose your social life and your support network and that sense of self and of your own humanity… And you spend your day crying, and collapsing, and crying, and collapsing. Today I felt like I was ceasing to exist again. It cannot slip through my fingers again.

Heads up – the next bit contains triggering themes, and talk of suicidal ideation.

Things are going to change. Due to my physical incapability I am going to have to spend a lot more time in this flat, and attend less at university (only on the other side of the River Thames, but the walk to the bus stop is too much and I cannot afford a cab). All I wanted was to put on my shoes and go to that bus stop and walk into a lecture theatre and just pretend to be an everyone else. I wanted to laugh, I wanted to talk about stupid trivial things that won’t matter tomorrow, and poke fun at my friend who says he looks like a child now that he’s shaved his beard off. Then instead of that I picked up a blade, and I held it over an artery and watched it bounce to the beat of my heart as tears rolled down my cheeks. I liked the ultimate control I had then, at a time when my life no longer feels like mine. I liked that a poorly timed sneeze would have been the end. I liked that it was that simple. It made me feel like this hell is something I have a choice about whether or not to endure (there is no choice but to go through it all, but I needed that illusion). And then I cried harder because I didn’t want to die at all, I just wanted a way out of the prison my body has become again and I realised that at that particular moment, severing a major artery was pretty much the only way. I cried so hard the blade fell from my hand. I cried so hard I couldn’t breathe in. I cried so hard that the palpitations got so strong I almost felt like I was being punched from under my own sternum. And then I passed out again, and that was ok.

When I woke up, the only two people from my course who know bare bone details about my health decided to video call me. When I answered that call, I was suicidal and crying. Within minutes, I was smiling, and I felt alive again, I felt like me, I didn’t feel like a freak to be feared. I didn’t feel like a heart problem. I didn’t feel like all was lost. We only chatted for a few minutes between lectures. When they went, I lost consciousness again. When I woke up, the tears did too.

I’ve more than served my time, but my heart has imposed another sentence. I knew that would eventually hit home. I knew all these feelings were there but I refused to acknowledge them. When I started crying, it took me ten minutes to stop stopping myself and just let it happen. And now, almost six hours later, I don’t know how to stop.

I feel so stupid, so ungrateful, so PATHETIC. But given the situation, and the reactions I’ve seen of the staff involved in my care, I feel like a few tears would have been justified. I just feel so alone. I want to go home, I just don’t know what that is. There is nowhere I feel safe – I don’t feel safe in my own body, how could I find a place to feel safe outside of it?

I’ve gone from this (a few weeks ago) to this (yesterday’s post), to emotionally (and physically) being riiiiight back where I was months ago. Only I’ve been dissociated and apathetic for so long that emotion is a very foreign and hugely overwhelming thing right now.

I’ve never wanted a small dog before (I always told myself nothing smaller than a Spaniel), but I really want to get a teeny tiny puppy, just to end the loneliness, just to be around something that sees me beyond this situation. Just to feel like something isn’t afraid to be around me. I’m going to be spending a lot more time at home. I don’t want to do that alone. I need something to need me to be alive, I just need somebody, even if they have 4 paws. If I don’t find somebody, I’m scared about what I might do, because I can’t cope right now. Physical health issues don’t just damage organs, they take down entire minds.

No idea where I ‘m hiding, but there’s no way but through.

… but it pours

I’m sat writing this with eyes full of tears that I can’t let myself cry, because I am trying so fiercely to shut out the reality I thought was no longer mine. It’s amazing how long and steep and exhausting the road to where a normal 22 year old should be is, and how quick and effortless the fall back to… this… is. So you’re going to have to forgive me, because if I don’t write this down, the tears won’t come; and if I don’t tell myself I’m going to post it, then I won’t let myself write it down. Ironic really – I’m living the situation, but I can’t handle it staring back at me from a screen. The only way past this wall of emotion is through it. So here we go…

I love my masters degree. It sets me alight, and it gives me a drive, and it has been my focus in a way my previous degree was too overshadowed by health hiccups to ever be. The people on my course are incredible, and all but two of them are totally unaware of my health issues. I hadn’t planned on telling anyone anything, and then last week happened. I’d been finding day-to-day life harder and harder and more and more exhausting. A half a mile walk to the bus stop felt like a marathon and left me with palpitations, coughing up foam as I waited for the bus to roll in and hoped there was a seat. I thought that was just because I’d tried to be like everyone else before my heart was quite ready to allow that (and my pacemaker is set in a way my heart doesn’t agree with). And then I realised there was something rather wrong. I realised too late really. I realised as I was sat about to pass out in a room full of people who thought I was an everyone else. I sat there, my vision swimming, my hearing gone, my head floating to the ceiling of the lecture theatre, and I couldn’t let my heart do that to me again… So I somehow held on and managed to leave. But I ended up in hospital almost as soon as I had managed to leave my course-mates behind.

Long story short – my heart baffled everyone who saw my ECG tracings except me. And then in walked a cardiac physiologist who has worked with me at the specialist heart centre I am usually seen at, and he saw the changes too. It wasn’t just that my pacemaker settings were inadequate (although they are), my heart has decided to fight the things helping it again. It has managed to do new versions of things that were baffling the first time they occurred… And thrown some totally new things into the mix. Essentially, my heart gets so confused by its own electrical system that it can’t fill the main pumping chambers, so they beat when they’re empty, and I get mad chest pain and palpitations as everything wriggles about to try and compensate, until my brain pulls the plug and I hit the floor for a little bit.

I ended up in a hospital with consultant cardiologists who didn’t understand the physiology of my heart (my normal), let alone its abnormal behaviours. The only time I cried was when I woke up one morning (on a ward where I was the youngest patient by about half a century) and some delightful human had stolen my bank cards, my ID, my everything, from the drawer beside my bed. The rest of the time, my brain was so overwhelmed that it just added a new layer of apathy and numbness over everything. Emotionally, I shut down. It was a protective mechanism against the bad things, but it also meant (and still means) that the good things don’t feel good any more either. I got really, really lonely (not that I was awake a lot). I just wanted someone to be there, someone to talk to, and the situation was becoming a bit of an elephant in the room. So I told two of my friends from my course. Nothing specific at all, just that my heart is, and for quite a while has been, a total arse. Their reaction was pretty incredible, and perfect – unlike anyone before them, they got to know me without even knowing my health was a thing, so rather than my health being a barrier they couldn’t see beyond, my personality did that instead and blocked out the health issues.

I’ve never been well enough to get a job, and to support myself through my studies I’ve made lists and lists of jobs to apply to. Because I thought I was an everyone else. And now I honestly can’t stand for long. I walk along bouncing off things, drunk on a lack of blood to the brain. I don’t know what I did for the last 24 hours, but my existence at the minute swings like a pendulum between nerve pain and me being completely out of it and drifting in and out to the music that is currently holding me together, so it was probably just that.

Today I applied for a PhD. Today all I could think about was how I need to contribute somehow to stopping someone else’s life slipping because of a ball of muscle beneath their sternum. Tomorrow I go to the heart centre with the only guy in London who understands my physiology and the wonders of Skippy. I’ve spoken on the phone with another member of staff involved closely in my care. He’s got nothing. When Skippy goes down, the other health hiccups hiccup, so I’ve been speaking to other humans too (I felt a bit better about not feeling emotionally great when the nurse at the other end of the phone was left speechless by the turn of events). I’d come so far from here, how did I end up back here again? And how on earth did it happen so quickly and so… sneakily?

I could walk my dog, I was doing my degree, I’d moved out, I was almost well enough to apply for jobs and support myself financially (when all my feelings hit, the financial stress is going to BREAK ME), I was living an independent life, I was functioning. I wasn’t well, but I was well enough to pretend I was (if that makes any sense). What I didn’t know about couldn’t hurt me. It wasn’t raining. And then it poured.

I don’t know why I put myself through this. From a non-emotional stance, it seems like a lot of effort and a lot of surgery just to propagate more unpleasantness. I’ve shut that thought down by living very much in the present. No looking back at what my heart has just taken from me again, I can’t go back and hold on, so why watch the past get more distant and further out of my reach? The future is something my brain can’t compute. But I don’t want to give up, and I don’t want to give in. So I curl in the comfort of each second – where the past is behind me and the futility isn’t here yet – and then I hop to the next second, and the next, until I pass out. I don’t think I’ll be well enough to do a PhD. I didn’t think I’d be well enough to manage a masters, and so far my attendance is already less than 75%… 4 weeks in. But that is not the thing that matters. What matters is that I didn’t think I’d get through my first degree and I did. I remained on a planet that several of my organs were so desperate for me to leave.

It’s raining so hard that my world is flooding, but everything still stands. When the waters subside I’ll come back to it, save what I can, plug in a few dehumidifiers, replanted the walls, and come home to the life I refuse to leave behind again. I just want to give something back, and I was so close to being able to do that.

“Look, I didn’t power through the struggle

Just to let a little trouble, knock me out of my position

And interrupt the vision

After everything I witnessed, after all of these decisions

All these miles, feet, inches,

They can’t add up to the distance

That I have been through 

Just to get to a place

Where even if there’s no closure I’m still safe

I still ache from trying to keep pace

Somebody give me a sign, I’m starting to lose faith

 

Now tell me, how did all my dreams turn to nightmares?

How did I lose it when I was right there?

Now I’m so far that it feels like it’s all gone to pieces

Tell me why the world never fights fair” – Home, by Machine Gun Kelly, X Ambassadors & Bebe Rexha

Still can’t let myself cry, that feels far too much like giving in. So I’ll stuff all of the above back into my brain, and play music loud enough to keep it at bay.

No way but through.

The trouble is, what I’m going to have to go through is kind of unpleasant. Oh well.

How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

Trying to Catch a Break

I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).

Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.

Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.

On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.

I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.

I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.

While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.

I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.

But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.

No way but through. Somehow.

;

“The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

– R. Frost, “Stopping by Woods on a Snowy Evening

In my mind, this post stopped at the end of that quote. In reality, I also almost stopped recently – wrote a final thank you card pleading for forgiveness, and a list of contacts, stuck both tear stained articles on the wall at the end of my bed, and prepared to curl into the darkness of whatever waited beyond daylight and moonlight. I could not see the wood for the trees. There comes a point when you are so tired – tired of hurting (physically and mentally), of thinking, of sinking, of almost dying, of being, that all you want is a break. And when life won’t give you that break, when it sees your white flag and doesn’t cease its fire… Your mind, the lone and weary soldier, pulls out the revolver that has until that point just been a comforting presence in your metaphorical waistband and decides that it has no option but to pull the trigger whilst the barrel is aimed at its own skull. The unpleasantness cannot take you alive. The pain is not one you can endure.

I am in a great deal of physical pain after my latest heart surgery, taking morphine and tramadol just to try and sleep through nerve pain caused by scar tissue sitting on top of a nerve. But my mind… nothing could numb that.

My revolver was medication. Medication that sat there, sparing me from further unpleasantness when I took it at the prescribed dose, but that any higher dose was also my revolver – deadly. Quick. Freeing. The knowledge of that was enough of a comfort to keep me going. There was a failsafe. I didn’t have to hurt forever. Just one more day. And then the next day, just one more – and while I couldn’t imagine it, I knew there would be a day where survival wasn’t a task, but something I didn’t have to think about. And then came the day I wrote that card, and made that list, and could not stop the tears.

I have been saved all too often lately by words. Words that came from places I didn’t expect them to, from people who understood me in ways I wished those closest to me could. First, my personal tutor at university (who I also almost died on last week, because my heart is an ARSE) – with one simple sentence about PTSD that took away the stigma my mind sharpened and used against itself, and completely transformed the way I saw myself. I used the support available for me. I asked for help I had been turning down for years. Then, the other night, a dear friend, amazing human, and creative soul behind this blog, who accidentally saved my life with words that found me in a place that nobody else (myself included) could.

And then I remembered the poem that begins this post.

The emptiness of oblivion is comforting, tempting, enchanting, but not a destination I am yet supposed to visit. I owe it to the humans whose kindness and understanding have been transformative forces in recent weeks, to move beyond its temptation, to carry on going wherever I’m going. Those people made me realise that feeling like this is not weak, nothing to be ashamed of, but understandable, excusable, human… and survivable, somehow. I made no promises to them anywhere outside of my mind, but I cannot betray them. I made promises to myself – to get this degree, to do something, to raise money to help fund research so that other people’s bodies might not drive them to the hell I have been to/through. And thanks to people (some of whom I have never met) I see myself as someone worth keeping promises for. I have a long long way to go before I get rest or respite of any sort, physical or mental, and I have to accept that, grit my teeth, turn off, and keep walking – sobbing and screaming and writhing in pain if that’s what it takes (also things that before I took as signs of my own weakness, and now acknowledge as a strong person doing anything and everything they have to but give in). It doesn’t have to be easy, and I know it won’t be. My situation is tough, it’s even recently been described to me as “crap” by somebody I expected to brush it aside. I’m allowed to find it tough. I’m allowed to hurt so much I can’t keep going. It’s ok to cry myself to sleep, to want to never ever wake up again. But these thoughts I keep inside are promises I have to keep. I have an unimaginable amount of miles to go before I am allowed sleep.

The way out of this is not six feet under, or wherever the wind may take my ashes. It’s through.

Agonisingly, impossibly, soul destroyingly (yes I know destroyingly isn’t a word)

There is

No way but through.

I sat myself down and had a thought at myself (if that’s even a thing).

When you can’t run, walk. When you can’t walk, stumble. When you can’t stumble, crawl. When you can’t crawl, drag yourself. When you can’t drag yourself, roll. When you can’t roll, just hold on. When you can’t hold on, reach out. When you can’t reach out, scream. When you can’t scream, talk. When you can’t talk, whisper. When you can’t whisper, blog. If you have to fire your revolver, fire it into the sky. And through it all, play Bastille. It’s colder six feet under. It’s lonelier when your ashes have been dispersed by the wind. There will be far more tears if you let go, the difference is, they won’t be your own. There is no way to live this life, or to be a spectator to it, that does not involve hurting. And no form of pain is a choice or a flaw – it’s a limbic system and nocioceptors (hello inner biomed student) – unconscious, understandable, protective, logical measures. Don’t expect to live and not hurt. Don’t expect to hurt and not still find reasons to smile. Pain may right now be all you feel, but even if it is ever present, it is not all that waits.

Finally, I have been taught that it’s ok not to be ok. That’s the most valuable thing any lecturer has taught me, the most precious gift a friend has ever given me (thank you blogging human, you know who you are). Something I hope not to let go of. Something I will someday pass on.

I Realise Now

On Thursday night I had no idea how to face the minor surgery I was about to have, but reached a point where emotion surrendered to logic and the rest of me surrendered to defeat. I lost myself in the sound of my favourite music, and hoped it would hold “the feels” at bay until I was beyond the point of no return. This plan worked. I sat outside the room full of lights and equipment (and people) in which I was about to have a wound in my chest sliced back open, and it was only then that I again to tremble – maybe with fear, maybe because I was freezing, probably a bit of both. 

The team were lovely, as was the consultant carrying out the procedure who to my surprise despite being the clinical director was not above wheeling a bed. And then I was away with the fairies. Pedro the pacemaker was infected, and also I was a little allergic to him (my immune system pretty much just hated his presence, not that it ever really brought out the big guns and saved my butt). He was removed, along with the (also infected) wire leading into Skippy (my heart) via which the sensible robot and the rebellious organ communicated. It couldn’t have waited. It wouldn’t have got better and neither would I. It saved my heart. 

And then Skippy saved himself. The part of a heart that usually tells it to beat is dead and gone in Skippy – too damaged by the colleague of the consultant who carried out this procedure to function again. So, obviously, Skippy had needed Pedro. But Skippy had also decided that Pedro was a control freak and he refused to listen. There had been teething problems as the two of them fought and Skippy won. Without Pedro pacing over the top of a rhythm which Skippy has not yet worked out how to co-ordinate with my blood pressure, my heart rate still stayed within a normal range (even though my blood pressure has not). They had expected to have to need temporary pacing or something to achieve this (and then wait 10-14 days and take me back to put in another Pedro), but Skippy held his own. 

How? For those of you who know about the anatomy of a heart, my AV node is a BOSS and has stepped up to the job. For those of you who have no idea what that means: another part of my heart has started telling it to beat – not normally its job, but something it is sometimes capable of when the heart is forced to adapt. The resulting rhythm is called a junctional rhythm. Because the heart beat starts from lower down in the heart than it normally should, the impulse that triggers contraction travels backwards through the top half of my heart. This means that a tiny part of my ECG trace will forever be upside down, and that sometimes my ventricles beat before my atria, which makes my blood pressure drop because that isn’t supposed to happen. 

I’m pretty unwell with it – I’m tired and my blood pressure is low, plus I have very frequent palpitations. They put out a crash call earlier because a nursing assistant and I went to meet the consultant who saved my heart’s butt (he wanted me to try and walk and see what happened, and to encourage me gave me a goal of meeting him by the fountain – but there was an emergency so he was busy giving someone else a pacemaker) and on the way back Skippy got confused as to how to maintain my blood pressure and I passed out. I’d been dizzy the entire time I was walking, but hadn’t expected to hit the floor. I was mortified, and soooo many people appeared from everywhere to scrape me up off the floor. My PICC line was unimpressed at being pulled and appeared to have split, and I was frightened it meant I’d have to stay longer and also totally beaten, so I cried. I wanted to go. 

We hope Skippy will stabilise and that this will stop happening, but there is a chance that my AV node may remember that this isn’t its job, get sick of being criticised all the time, and demote itself to its previous position of just passing on the message when something else tells my heart to beat. If that happens, I’ll need another Pedro (when I was high, I made the consultant bring Pedro 1 back to the ward with me in his pocket so I could take a photo before he was last destroyed as infectious waste). 

Apparently while I was high I also said some very nice things about this hospital and told them about my grand plan to raise money for charity (which you don’t know about yet but has since been greatly encouraged by the consultant who removed Pedro). I said many more really weird things, promised everyone chocolates (I did deliver on this promise) and apparently came back to the ward absolutely fascinated by my left hand. 

I guess I’m struggling with the fact that I felt so much more well before Pedro was removed, and that this junctional rhythm kind of has me on my knees. I don’t think my body was anywhere near prepared to deal with a heart rate of 52-54, and when I try to walk around while my heart is at that speed everything goes black. When it’s around 70 or faster (which is probably 50% of the time), it feels like Skippy is a galloping horse because the rest of me isn’t quite used to a junctional rhythm. But the consultant who took Pedro out is hopeful that this is a manageable situation and reluctant to put in anew pacemaker. It could take a few months to stabilise, or it could get worse, but the amazing news is that he’s so hopeful about the situation that we are taking me off all of the IVs tomorrow and they are finally letting me home (they were pretty insistent about one more night and asked me to please not run off – last night I was so desperate I looked up local places to stay within my budget and only didn’t leave because I couldn’t walk). 

This means I can fly to Thailand with my family on Saturday to meet my baby cousin again and see my uncle and aunt and their other children and my granddad. IT ALSO MEANS I GET TO SEE MY DOG. Labrador cuddles will heal all.

I hope sometime soon I feel as well as I did when Pedro was in charge. No more surgeries. No more admissions. I have made the decision that I cannot deal with this emotionally any more and that it is kinder to my mind to let nature do whatever it wishes should things get worse again – it’ll win in the end anyway and I cannot find any way to justify putting myself through this again. It has pushed me to places within myself that made me long for death, cry for it, and cry because I didn’t really want to die, just to escape the situation. This has been so mentally traumatic that I know after I leave it’ll be a long time before I voluntarily admit myself to hospital or enter a hospital ward (at least while conscious). Fear is a dominating thing and mine has been reinforced. I always react to the biggest fear, and right now my fear of being here is greater than my fear of what may happen if I am not. It will take a long time for those tables to turn. 

I have faith in the consultant who took out Pedro, and he has a lot of experience. I have raised my concerns multiple times and he has assured me that this situation is not concerning from a numbers point of view. If anything goes wrong, it’s on their heads, not mine. I’ve questioned, I’ve pointed out, and every part of me hopes these guys are right.

If they aren’t, I hope Skippy at least has the decency to completely stop next time. It’d be kinder. If I was a dog someone would already have helped him along on his way to stopping. 

I felt so well and now there are so many positives but I pass out when I walk around. It feels like two steps forward, one step back. But it’s still the right direction. 

I am beyond caring what happens. I cannot care because if I do I’ll immediately cry. Everyone here says I look so much happier, and it’s simply because I cannot let myself feel anything. The absence of my overwhelming despair is mistaken for happiness. It just means I am hollow, so broken I cannot hold any emotion, so fragile I cannot withstand its weight. I hope it works out, of course I do. But I’m not afraid to die. As long as the awfulness ends… I’ll take it. I can’t do this any more. And if the awfulness isn’t awful enough to kill me, I don’t let it put me in a hospital. 

I react to the biggest fear.

And I’m no longer afraid to die.

This is going to be… a car crash. 

What is the point? It all goes belly up in the end so why not dance in the flames? Feeling like this honestly what is the point? I’ll dance until these flames take all I have. I realise now that there’s no hope – nobody will ever get me back to how I felt with Pedro present. This fire isn’t big enough to warrant the attention of the fire brigade or the use of a fire engine and yet it hurts and… I… I have to throw myself into it and embrace it because it’s part of me now. This unpleasantness is fuelled by my body, comes from within it, and it won’t stop until my body does. I know that now. I know. 

I’ve accepted that fact but… I don’t know how to face it. I am already more ash than human. I feel like one of those charred corpses left after Pompeii.

Trust the fire not the fire brigade” – Nihils, Help Our Souls



Please get a grip Skippy, there’s no more anyone will or can do for you right now. I took you to a Bastille gig. How did we end up here?

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.