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.

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What Even…?

Today has been the sort of ‘interesting’ that most people avoid at all costs. 

I was sat, perfectly well, and had seen a different doctor who once again told me that my heart wasn’t pumping properly, and that the amount of health issues I had were abnormal for someone so young. We discussed moving me to the specialist heart hospital in London where my cardiologist is based.

“Dizzy” was my answer to the question how do you feel? My chest still hurt but my blood pressure was too low for them to give me the medication they wanted to, so they gave me some incredibly ineffective tablets and waited to see if they worked. 

“I feel like I’m going to pass out” was the next thing I said to anyone. The nurse looked with alarm at the monitor beside me,

“I need to lay you flatter. Now. I’m going to get a doctor, ok?” I looked at the screen. My pulse, for the first time in 2 years, was a steady and sensible 70bpm while I was awake. Great, right? It would have been, had I not looked at the pink numbers beneath it to discover that my blood pressure was a feeble 55/27. Oh heart, you complete idiot, I would have thought, had I actually been able to think over the pain. Or been with it enough to think at all.

Then my oxygen levels started to drop, and several repeated blood pressure readings confirmed that yes, that was an accurate blood pressure and Houston, we had a major problem. Two doctors. Two nurses. Some other people. All crammed into my teeny tiny side room, all panicking. An oxygen mask was at some point placed over my face…

 

Eating an apple did not keep the doctors away. imagine six people (and later an altrasoind machine and an x-ray machine) squashed into this tiny room (top right). Also, I tied myself in a complete knot by accident.
 
“We need an arterial blood gas. Now.” Says the doctor. (Ok so apparently I’m changing tense now… I guess we’re just going to have to roll with it) I can’t put my hand in his, I can’t even move. He loses my arterial pulse. He pokes my radial artery anyway and nothing comes out. He backtracks to the crease of my elbow and tries to draw blood from an artery there – nothing. He tries my groin. Nothing. Another doctor. He can’t find an arterial pulse. Somehow he gets bloods from the artery in my groin anyway. They are pumping me full of IV fluids to try and raise my blood pressure even though I’ve already drank 2 litres in an attempt to do the same. It won’t go higher than 70/50. 

“My exam!” I wrestle with the oxygen mask and just about manage to faintly utter the words.

“Seriously, I really understand where you’re coming from and I know this is completely s**t, but you aren’t even well enough to stand.” My brain chooses to ignore this and continues to cling to the deluded hope that I will somehow manage to sit my exam tomorrow morning, because it can’t deal with the thought of giving up on that right now.

The technician comes to scan my heart twice, and is sent away twice. I’m not well enough. I can’t breathe. There are people everywhere. There’s an oxygen mask on my face and I am still suffocating. I have a pathetic moment and start pleading with people to make it stop. When they ask me how I am, I tell them I’m fine (if you know me, you’ll be aware that this means I am far from fine). 

They bring me lunch. I sit up to eat it and I’m so dizzy I lay back immediately, exhausted. I inject myself and fall asleep. I have never uttered the words “help me”, “I’m so sorry for the bother/ fuss” or “thank you” so many times in my entire life. 

“You gave everyone quite a scare” I’m told when I wake up. The cardiac technician shows up and scans my (now below 70bpm) heart. They sit me up and take my top off for me. I feel like an idiot, but there isn’t anything I can do to save myself the indignity.

The endocrine consultant walks into the room. He is far from happy with that side of my health. He adds a bunch of bloods onto those they already want to do, and tells me that I will see a cardiologist every day that I’m here… This is starting to sound a little too long-term

A cardiologist with the same area of expertise as my London consultant walks into the room to wake me up again a while later. I think I saw him earlier, although I can’t keep my eyes open long enough to maintain eye contact. He says he wouldn’t even consider the surgery I’m waiting for in a heart like mine. At this point, I decide I’m leaving to sit that exam. (Keep in mind the fact that at this point I couldn’t actually lift my head and sitting up without anything to lean against made me feel awful)

The nurse walks into the room about half an hour later to find me near tears. I apologise to her for the bother and say I don’t need to be here. She says the doctor made a poor word choice, and that blood pressure readings as low as mine became are not normal at all, and that the consultant said I need to remain in coronary care. But I feel stupid. 

… I’m going to have to go now, I’m starting to feel ridiculously dizzy again. I’m just confused, I guess. And I feel like a waste of time. Thanks for reading whatever this was, I apologise for the changes in tense etc. I’m not quite with it

Lesson Learned (An Outlook I Never Expected)

(This post is a little odd/ probably a load of rubbish, but as I laid with my heart breaking and failing at the same time I realised there was something I wanted to say. (Give this post a chance? Hopefully it makes more sense nearer the end))

Thank you to everyone who ever gave up on me. Doctors who ‘ran out of ideas’ when there were other (admittedly drastic) options all along, university staff who looked at the situation I had been in and doubted I would get grades anywhere near those I wanted at the end of the year, who (it felt like) washed their hands of me when I needed their support the most; to the friends who walked away, to the people who promised me I could trust them and then disappeared… To the people who drove me closer to death than any illness ever could… Thank you.

At first the only message I could take from your actions was that I wasn’t worth trying for; that the things I wanted were never going to happen, the things I had were too good to be true and the things that I have are too good to last.

There were times that I gave up on myself with you, but more often than not there were times when I have up on myself because of you – because the seeds of self doubt that you planted grew into mighty oaks I could not chop down. As life shrunk my willpower, the mole hills you left in your wake became mountains upon whose rocky faces I met feelings I had never encountered before; feelings that told me to climb higher so the fall would be fatal. Feelings that blinded me to the view at my feet. 

I consumed your poison even when you no longer poured it into my ear. It multiplied inside of my head like a virus – your thoughts of me slowly replacing my own. My mind generates your poison for itself now in quantities far larger than you could ever have made them. It keeps me awake at night. It hurts – the burning away of who I was, of who, thanks to you, I will never be again.

You let me fall to the places you once protected me from. You left me alone in situations you promised I wouldn’t have to cope with by myself. You told me there was nothing you could do to change the course of my health. And when I reached out, when I tried to mend the bridges that were burned, when I needed support more than ever… you turned your backs. Each and every one of you. And if the fall was terrifying, hitting the cold rock of your betrayal hurt like I had never hurt before. Each and every one of you, each and every time.

I’d love to say I don’t need you now – I do. I need you now more than ever. I need people to be there more than ever. And that’s a tough time to realise few people are willing to do exactly that. So why am I thanking the people who broke me?

Because even though I hit rock bottom, I picked up some pretty amazing things from the gutter I found myself laying in. I learned lessons about humanity. I learned that even those you trust can’t really be trusted. I learned not to depend. And in doing so, I learned the strength of myself. 

Slowly but surely you taught me that I can take on the world and win. You taught me to lower my expectations of everyone to avoid getting hurt. You taught me that I can function with a broken heart, which is good to know because it’s currently letting me down just like you did. 

You taught me that I can function without the parts of me you bruised and crushed and stole.

You taught me that beaten down battered me with nothing left to give, no energy left to fight and almost no support, can take on the world, and her own mind, and near death…

And make it through.

Right now, laying in a coronary care unit, beaten down and battered and with not a lot left to give… I’m incredibly grateful for that lesson. If I can survive the things you put me through, I can survive whatever my heart throws at me.

But if anyone wants to step back into my life, PLEASE be there for me now. Yes I’m pleading with you, I will even beg if you want. I’m lonely. This is tough. And I’m sorry. I’m sorry because I gave up on you too.

Update: Life and Near Death

I’m writing his post from the critical care unit of a London hospital. It happened. We all knew it was going to. And I was once again powerless as my fear became a reality.

Last Friday morning I nearly died. 

Pretty spectacularly. Hours in resus and a trip to the critical care unit. And then I got worse again right after I got better. And now I may need a minor surgery. Not my plan for my last few days of being teenaged, not my plan for the day before my birthday (was meant to be going to a concert tonight) but hey, at least I’m going to actually see my birthday. My presence on the planet is kind of the only present I need right now. 

Today I woke up and cried five days worth of tears – tears of relief and fear and vulnerability and the huge swirl of emotions that comes with being stuck in hospital alone, and from accepting your own mortality and then not having to face it. I’ve no idea where these tears came from, but I know they needed to fall. 

I hope to be out of here today but know that I probably won’t be. I’d planned to catch the train home at the weekend, then hop on the bus, sneak into my parents’ house, and walk in to wish my mum happy Mother’s Day as she ate breakfast in bed with my little brother; I’d planned to go shopping for thank you presents to give people on my birthday, I was looking forward to another week of lectures at uni, there was a presentation I was meant to prepare, and there was a blog post I meant to write about how I run to the river Thames every time I freak out… but life and near death got in the way.