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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“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.

Where I’m At

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No way but through.

Just Another Loop

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

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

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

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

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

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

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

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

Still, no way but through. 

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

The Deep End

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t know where I’m at.

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

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

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

No way but through.
P.S

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

“An Act Of Kindness”

I’m kind of embarrassed to say that things lately have been becoming increasingly… tough (I hate the ‘t’ word, because I’m not sure I’m justified in using it to describe my circumstances EVER). It feels as though I’ve been watching every element of my life slip away around me, with not enough hands or enough strength to catch the parts worth saving. I’m always very aware that I’m lucky (incredibly so) that my life isn’t awful. There is a huge capacity for it to have been much, much worse. I always use that attitude to drag myself up out of the places my mind gets stuck, tell myself I’m an ungrateful idiot, and move on. But things pile up. Normal 21 year old things, the impending doom of exams that I’m far too unwell to prepare for (and may not even be able to sit, as they are only next week), a crime committed against me in my own home, the huge emotional mess that existed before and after that, family disasters, and all the health stuff etc. etc. Not the end of the world, and maybe manageable one at a time if I wasn’t so mentally exhausted. But I kept going at the thought of heart surgery, at the thought that it might fix everything and I’d wake up an entirely new person.

For most of yesterday my heart rate refused to dip below 150. With all the marathon headlines floating about, Skippy (my heart) seemed to think we were running a marathon. I slept most of the day, not by choice, but because I couldn’t fight it. I couldn’t catch my breath. Eating was a strenuous exercise. So strenuous in fact that I almost passed out in my dinner. I was a dizzy heap of pathetic incapability that infuriated me. Skippy just said no. He hurt in extraordinary ways. My left arm went dead. I could barely function. Surgery was not meant to do that to Skippy. It was meant to appease him and every aching moment of his freak-out was an anchor pulling me back to the reality that things hadn’t worked. In fact, things were significantly worse. And that… That was a bitter pill to swallow. It made all of me sink.

Then I got a message. From Portsmouth Uni Friend. She told me she had a surprise, and sent me a link. To this. A small charity gig, featuring none other than Bastille. In Islington (an area that just reminds me of the hospital Skippy and I used to go to near there). On the 22nd of May. She knew how much the music of Bastille has meant to me through some pretty tough times, what it stood for, what it got me through. And she said, “shall we go?” And then another friend messaged, saying she knew how much that music meant, and she’d even buy my ticket. With the track record of things that seemed too good to be true turning out to be… hopeless hoping, I didn’t think anything would come of it.

So I went to bed. I was up all night, and I was scared. I stayed up until 3am, with Skippy racing the entire time, feeling almost as tired as I was in the end. For some reason, if I sat up and turned the light on, I was sure it would stop him from stopping. It was irrational for me to think I might never wake up, but after surgery Skippy is a beast I no longer know. He’s different now. Alarmingly so. I drifted off. Palpitations woke me from sleep. Chest pain stopped me drifting back off. Over and over again. I’d sit bolt upright and just hold my chest and oddly enough… Talk to the freaking out ball of muscle beneath my sternum. Skippy didn’t listen. It didn’t stop me telling it ssshhhhhh, it’s alright, over and over again. I was too wired to sleep. So I put in my headphones, and listened to Bastille’s Pompeii on repeat, because from the first time I ever heard that song, it has never failed to calm me down. I haven’t had a night like that in a very, very long time. It was draining. I was scared by it, stunned. I hadn’t expected it. I woke up almost afraid to stand.

With my heart in such a state, I naturally began thinking about the consequences. My exams start next week, and I would be in no state to sit them in my current situation. Then what happens to my third year of uni. Come to think of it, with a heart like that, how would I ever get a job? I wouldn’t be able to go for a walk, and I’d certainly never run again like I dream of being able to do. And my thoughts frantically raced around my brain trying to find something that might be unaffected, and there was nothing. Skippy has a hold of everything, and when he rebels, I lose it all. So I was searching for something to wake up for, to carry on for, to motivate myself with… And I just watched everything slipping away. Stupidly,  I couldn’t find anything left. I was so tired. With all my health issues. But mostly with the idiot inside of my chest. Skippy in his current condition isn’t going to kill me, he’s just “limiting your life” in the words of my cardiologist (which tells me that there isn’t really any reason to be significantly bothered because hey, the thing could be about to kill me and it isn’t). But still. I ground to a halt.

And then this morning, at 10am, with Skippy still shaky and determined to misbehave and me trying and failing to focus on revision through his aches and grumbles, I got a message. Two tickets to see Bastille at a pretty small gig. Me and Portsmouth Uni Friend. HK Uni Friend adamant that I would not pay a penny for my ticket. I was, and still am, astounded by their kindness. Completely. Astounded. In fact, it all seems a little surreal. They simply said I needed a reason to be happy. They said I deserved it. They said my life was unfair. I don’t deserve such awesomeness, and there’s nothing unfair about my life at all; in fact, I’d rather me go through all of this if it means that somebody I know or care about doesn’t have to go through it in my place, and I am frequently thankful for that fact because I think that’s… Fair.

And now there’s something to look forward to, something Skippy can’t take away, because even if I have to crawl, I’m going. My friend pretty amazingly said that even if we go and I end up unconscious (as I did on my birthday when we went out), it will be entirely worth it. And that’s pretty much my view. Skippy is wrecking a lot of things at the moment, and right in the middle of the void that has created, there’s now something to aim for and look forward to and… Be on the planet to witness. A calm, right in the middle of the storm.

And that’s all I needed. Something to look forward to. Because nothing seems bad anymore. I have perspective again. I’m sat here with Skippy still being an idiot, waiting for an arrhythmia nurse to call and… I’m lost in this awesome little bubble of happiness where fear cannot find me. I have something that makes me feel 21 again instead of 80, and I kind of live for moments like this. Where normal 21 year old things happen. I just suddenly have this overwhelming feeling that things will be ok.

It all works out in the end, I guess.

You don’t appreciate solid ground until you’ve been lost at sea.

(Also, yes the title of this post is also that of a Bastille song. Very fitting today. My friends are… well, I don’t deserve them at all, but they mean the world to me).

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

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

How am I gonna be an optimist about this?”

Bastille, Pompeii 

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

I wanna feel human again

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

I wanna feel human again

Human again”

Kodaline, Human Again 

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

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

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

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

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

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

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

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

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

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

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

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

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

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

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

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

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

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

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

“I Don’t Wanna Hit The Ground”

“I don’t ever wanna stop

You could not have made it up

Who’ll catch me when I drop?

And stop me falling

Is this ever gonna stop?

Can you catch me when I drop?

I know there’ll never be no superman

[…]

But if I fall off this cloud

If I fall off, oh superman

Oh superman

I don’t wanna hit the ground

I don’t wanna hit the ground

I don’t wanna hit the ground

Oh superman

Oh superman

Oh no

I don’t wanna hit the ground” – The Big Pink, Hit The Ground (Superman)

I am trying to do uni work, and I am trying to think, but I can’t breathe – it’s fast and laboured and it’s my body’s futile attempt to regulate the acidity of my blood (it’s called Kussmaul breathing and I know it all too well). I can barely keep my eyes open, and I’m home alone with my dog, who woke me at 6:30am this morning crying and shaking in pain (he NEVER makes a fuss when he’s hurt normally, not even after surgery. Naturally I FREAKED OUT, forgot how unwell I felt, gave him my quilt to lay against so his weight wasn’t on his hip, and just held him and stroked him for two hours because he freaked whenever I let him go).

Today I don’t even know what it is. I’m exhausted, but not just physically. I want to just crumble. And I want to carry on. The point is, I can’t carry on. Physically, this body is not letting me human at the moment, and trying to keep it alive is exhausting and increasingly difficult. I know I need a bunch of IVs. I know my heart is annoyed and my kidneys are annoyed and my blood is leading a mutiny against every cell in my body. I’m… Scared. I know I’m going to fall. And I don’t want to hit the ground. I don’t want to stop living this life, I don’t want to stop being out in the normal world, I don’t want to almost die again, I don’t want 8 attempts to get in a central line before they leave my neck alone. I don’t want to be in the process of dying as I write this. I’m so unwell even my mum was starting to get concerned before she left to go to lunch with her friend. I told her earlier that I have another migraine, because I’m not sure whether she’ll be helpful or just get angry and shout at me again for the ways in which my health has torn her life apart over the years.

It tore her life apart, and she got to shut it out. She got to shout, she got to walk away when she needed to… And I haven’t had that. There’s never been any pressure relief, no break, even for a second. Honestly, I laid in bed last night drained physically and emotionally, unable to move, wondering how on earth I’d made it through the day, with nothing left to give… And I knew that whether I had anything left to give or not, I was going to have to go through exactly the same thing again today. And tomorrow. And the day after that. And it isn’t just feeling unwell – it’s what that feeling means. It’s that which gets to me. It means the grim reaper is keeping tabs on me, clawing at my clothing but not able to take hold yet, waiting for me to slip, to stumble, to sleep through one 30 minute alarm… I have no idea how I’m alive. Honestly, right now, I have no idea how I’m alive. I’ve no idea how I’ve carried on over the past few days so clearly in a serious medical emergency. Hope. Luck. Stupidity. Home-made IVs. But now I’m breathing like I’ve run a marathon, and I can’t stop it. I also don’t have the energy to maintain it (fun when that eventually happens… NOT). I don’t even know what I’m feeling right now emotionally. It’s all rushing through my head to fast for me to be able to grab hold of a feeling and identify it, and at the same time there’s nothing. I just want to cry. I know it’s pathetic, but I just want to cry.

“Yep, that is a… HIGH heart rate” The pharmacist at my GP surgery remarked about an hour ago when I went for a medication review (this is the first appointment I’ve been to with any doctors at all in MONTHS). New medication was added, he told me my kidney function was variable and sometimes… Completely awful. I sat in front of him hoping my body wouldn’t betray me as we discussed Donald Trump and Toblerone. I was glad he wasn’t a doctor, because my body was SCREAMING that I was seriously unwell, and any doctor would have picked up on the signals right away (also paramedics who are buying their lunch and encounter you in the queue to pay, as I’ve learned).

And I can’t go. It’s like I’m having a fight with this big powerful thing that stands in front of me, and I scream at it and hit it but it won’t get out of my mind. It just reminds me what happened in hospitals before. It replays it like I’m there. And I can’t. I can’t get over it. I can’t get round it. And I lose myself in the frustration, in the helplessness, in how illogical it is.

“I owe it to me, now yesterday’s gone

Doing it on my own

I know I’m unique, wear my scars with pride

Doing it all alone” – The Big Pink, Lose Your Mind

Time to order pizza I guess. I’m not sure if reading this you know what it feels like to feel your life (or at least your consciousness) slipping away, but I’m there right now. And honestly, I am so, so exhausted that it’s almost a relief. I am past the terror. I just want to order a pizza and hope I somehow manage to get up off of this chair (my muscles feel like… I can’t even explain). And no matter what happens, this is my immediate future. This state. Right here. It will be my tomorrow if I somehow hold this off. It will be every tomorrow until something gives – it’ll probably upset another health hiccup, and maybe that will be the thing that almost kills me. I can’t even be scared any more. I don’t have the… I can’t even… Even. I don’t want to stop. I just want to… Just be present in my life and get to feel sort of my age. I just… This is sounding so, so ungrateful but today I don’t even know what I can’t even deal with because I’m at that level of not being able to… Even… Words.

I’m going to pass out now, excuse me while I temporarily lose consciousness.

No way but through.

The “Nothing” That Nearly Killed Me

“But you’ve gone through so much worse. This is nothing in comparison to that, right?”

Haha. Hahaha. HahahahahahaNOPE. This thing could kill me within hours. It’s up there with the worst of the things I have and will face. It makes me feel like I’m dying because it’s kinda killing me and if I walked into a hospital right now they’d put me in the resuscitation unit and man the panic stations when they failed to get in an IV line. But I’m like this so often that you think I don’t look sick. You can’t see me right now, but you’re so used to me looking unwell that you think that’s healthy me. 

Today was a day of defeat. It was a day of damage limitation and duvets and letting my dog up onto the sofa he isn’t allowed on because he wouldn’t leave my side and wanted to snuggle. It was a day of a nausea so intense I couldn’t even drink water. It was a day of a splitting headache so severe that it gave me visual disturbances and an inability to stand even the dimmest light present in a darkened room. It was a day where my heart decided that 170bpm was an appropriate rate to beat at while I was curled up half asleep, and my blood pressure was so low that I couldn’t feel a peripheral pulse. It was a day where dizziness had me disorientated and stumbling, and everything spun. And it was a day of acidosis. As if my heart being a poop wasn’t enough of a present for today. My dog knew. He just knew.

I woke up this morning, realised I was seriously unwell, injected intravenously, went to sleep, and attempted the whole process of waking up again a few hours later. I felt slightly less grim, but still knew I was seriously unwell. If I’d have called an ambulance at that stage it would have used blue lights and sirens for the heart rate alone. I was in acidosis. Almost as bad as the other day. I was experiencing symptoms that I don’t usually get until my pH is around 7.1 or below. I had been planning to properly start my uni work today and begin the mammoth task of catching up, but I couldn’t do anything at all. I thought my room was dark but there was still enough brightness in the darkness to hurt my eyes. I grabbed my quilt and my injections and medications that I need in the morning, and made my way downstairs because our living room has thicker curtains which I thought might block out more light. My dog followed. He has refused to leave my side for anything, and if I leave the room he runs after me in a sort of panic. He wakes every few minutes when he’s asleep, lifts his head to look at me, and if he can see me and I am moving or acknowledge his presence, he goes straight back to sleep. If he can’t quite see me or I’m half asleep, he gets up and puts his face right next to mine on the bed. If I still don’t do anything, he nudges me until I move or groan (or even better, tell him he’s a good boy) and then immediately curls up and goes back to sleep. We were home alone for most of the day, but I felt safe. He knows when I’m not well. He turns into my little protector.

Processed with MOLDIV
Top left: Human, are you ok? I’m right here. Top middle: You sure you’re ok? You have a pillow over your face. I’m just going to stare at you to make sure you stay alive. Top right: That’s it! I’m going to have to lay on your legs to make sure you’re ok. Technically I’m not on the sofa, I’m on you, so you can’t be cross. Bottom left: You don’t look well. I want to snuggle all the bad stuff away. Let me just… (over about five minutes he crawled up higher and higher until he was laying on my chest with his head tucked right under my chin. Every time he heard a noise he sat on my chest and growled a little into the empty house). Bottom middle: Ok your mum is home, I’ll just lay RIGHT HERE and make sure you’re still ok. I’m not even moving for food. Nope. Bottom right: YOU MOVED ARE YOU OK? Just checking. 

The first thing my mum said when she came home from work to find me curled up on the sofa was “Oh *** you look rough!” At this point it hit home to me how unwell I was. My dog sat right by me, his back to me, letting me stroke him. I at last managed to drink something and ate a tiny amount of food, but my heart was RACING and although I could look at light and stuff again, my head still ached awfully.

“You aren’t really getting much work done, are you?” My mum sounded exasperated and almost irritated/disapproving. I couldn’t be dealing with that. I’ve done some work over the past couple of days, and it isn’t her job to judge me and get on my back about work any more.

“Why haven’t you got a boyfriend?” Was her next question. Because it isn’t a priority right now. Because I don’t need a boyfriend to feel like a person. Because I need to learn to like myself before I can let someone else even think about loving me. Because I can’t love and I can’t trust because of all the things that happened when I was younger. Because right now and for the last few months every spare thought has been eaten up by me trying to figure out what to do to stop myself dying?… I felt like throwing the sofa I was laid on. I felt like she thought I was doing something wrong. I felt insulted.

I slept for most of the day. I woke feeling like I needed to sleep for hours all over again. I couldn’t keep my eyes open, I couldn’t stay awake. I was freezing. I had a long hot bath (I usually shower but there was no way I could stand for so long) while my mum sat in the next room wrapping Christmas presents. We had a chat which mostly involved her asking me the age of people’s kids and us trying to work out if the present she’d bought was appropriate for each child. It was kind of nice.

“Unload the dishwasher before dad gets home.” My mum said to me on the phone. My little brother, WHO ACTUALLY LIVES IN THIS HOUSE, refused to help me. I feel like a guest here, like I don’t belong, yet it’s quite ok for me to be integrated into the family fully when some chores need to be done. I was dizzy. I didn’t care if that meant I broke a plate, I just did as I was told.

My dad got home and wasn’t happy that I had blankets on the sofa. Of course, he couldn’t say anything to me, but I heard him bitching to my mum and to make everybody’s lives easier I dragged myself upstairs, feeling as though I were in the way and like a piece of dirt all over again (I tried to help them with something and was ignored and basically told to buzz off). I realised why I’d been spending all day in my room until this point, but I don’t like being shut away.

My dog and I went back upstairs. I curled up on my bed, so tired that I couldn’t think straight. I don’t do duvet days. I rarely admit defeat. I keep going until/while I’m literally dying (Last week I sat an exam with a pH of at most 7.1, then completed and submitted my coursework and tried to go to the library before going to hospital on foot and by bus, where we discovered my pH was 6.9 and I shouldn’t really have been conscious, let alone able to stand.) I don’t like to bother people and I’m always frightened that I’m just overreacting and people will be annoyed with me for wasting their time. For me to spend a day curled up under my quilt, not even attempting uni work, with my laptop shut down and out of sight and my headphones in another room… I have to be very, very ill.

But that’s difficult for people to comprehend. There’s no blood pouring out of me. I don’t have any gaping wounds or visible deformities. People can relate to the flu or to surgery because they are likely to have experienced one or both, and they understand what surgery involves. They don’t understand things they can’t see. They don’t understand acidosis and tachycardia and migraines (I don’t count migraines among my health hiccups. I don’t get them too often, and although some last an awfully long time and all are debilitating, this one only lasted a few hours thanks to the magic of the tablet I finally managed to ingest. It’s like diabetes – it’s so normal to me I forget to label it a hiccup, yet it brings me to my knees sometimes). When I told my friend I was in acidosis again and my heart was being a poop, she responded to my message about how awful the situation was becoming with

“But you’ve gone through so much worse. This is nothing in comparison to that”

She said I’ve had surgery and surgery is MAJOR and this wasn’t surgery so it couldn’t be anywhere near as bad. It was worse. It could kill me within hours. It should. I shouldn’t be able to fix it outside of hospital but I pump myself full of IVs using unorthodox methods to do so, and drift along with a slightly low pH (around 7.25-7.3) for as many days as I can (which I shouldn’t be able to do, but my superhuman body is so used to this state that it can just about function, and doing hourly injections – not of everything I need, but of one thing that does at least something – I can hold off the fatal levels for a while instead of reaching them within hours as I should do).

She went on reassuring me, saying that if I can bring myself to go to hospital I might not be in there as long and I will be that step closer to getting better. She said that I’ll get better, and we can travel. But that’s the point.

I’m not getting better.

We don’t know how to make me better.

We don’t know how to fix the major health hiccups, how to tame the rebellious organs, how to stop new ones going wrong in unrelated ways.

That’s the point.

People don’t know how to understand that, because in their eyes hospitals fix everything.

She was amazing about my PTSD. She told me I wasn’t stupid for it or whatever anyone else had said to me about it. She said that I was still in there. She said so many amazing things, she said she’ll always be there to talk and she’ll help however she can. She understood that the PTSD isn’t me, and she told me not to call it a monster because it gives it too much power. We named it the snake, because I really hate snakes. She was so helpful about it all. She really, really understood and she made me feel like so much less of a freak about what’s going on inside my skull.

I’m at the stage where I worry about whether I can do enough to allow me to wake up alive tomorrow. I’m at the stage where I don’t know how I will get through tomorrow. I can only try.

No way but through.

 

I Never Thought I’d See The Day

I don’t like bothering people. I’m always terrified that people will walk away from me due to my health (because so, so many have) and it stops me burdening the friends I have now with the reality of the situations I end up in. I play things down, and when I’m in hospital few people usually know. My absence is not often noticed – people don’t message when they notice I’m not around, and I wake up to an empty message inbox on my phone. The people who do know have no idea how lonely I am, and have no idea that I’d sit and watch them walk past the hospital to go to lectures at the medical school. They had no idea how much it hurt to know they couldn’t be bothered to cross the road for me. But I can’t blame them. It just made me stop talking. Start hiding.

I never thought I’d see the day when I had the kind of friends that I have now. I handled things differently this time, I gave them a chance. They handled things better than I ever thought a group of 19-20somethings would. And I am so touched and blown away with their support and responsibility that I want to mention it here. I kind of just want to say what my friends did, how they acted, and how much it means, because I still can’t wrap my head around the fact that they care so much for so little reason (the middle bit is kinda boring, but the end is the bit that really really gets me).

WR Uni Friend took me to the hospital, and after I became too unwell for her to stay in the resuscitation unit with me, she sat in the waiting room for hours. Uni Pal joined her, sitting there for hours and leaving before I was “with it” enough for people to be allowed back to my bedside. They both appeared together later (Uni Pal brought refreshments), and stayed with me until the early hours of the morning when I was moved to a ward.

In that time, Uni Babe had messaged me to ask if I was conscious, and, getting no reply, concluded that I wasn’t. She’d known I was heading to the hospital, but had no idea when or if I’d made it, and apparently had visions of me lying in a ditch slowly dying. She called my accommodation (multiple times because they kept hanging up on her) and asked them to go and check my room. She then called the hospital and ended up on a wild goose chase of phone calls until she found out I was in A&E, at which point she calmed a little.

Something super weird happened. My phone filled with 18 messages as I laid there almost dying, and when I was with it enough to be able to sort of see and had the energy to hold my phone, I almost cried. I’ve never had that. Ever. I’ve never had people hear that I’m in hospital and care enough to message. News seemed to have spread a little among my close friends, and their concern was evident. It made me feel guilty, but it also moved me beyond belief.

Normally I’d have simply replied that I was fine but in hospital. One of the doctors told me that people needed to understand what had happened so that they could be there to support me in the way that I needed them to. He wrote a very long message in the notes section of my phone, and told me to copy and paste it to anyone who had messaged me as I laid there, when I was able to see well enough to read again. And I… Did. The next morning, I sent that message to anyone who had messaged me. I was honest with people about how bad things had been. WR Uni Friend had no idea, and had the night before been telling people I was fine (clearly she had no idea of the situation, which kind of makes me glad because she would have worried).

People decided to visit. My closest friends knew I was scared of hospitals but none other than Uni Babe could comprehend the true level of the fear. Even so, they decided that they didn’t want me to be alone, and I woke up the next afternoon to find WR Uni Friend and Uni Pal stood at the end of my bed. They brought chips  from the fish and chip shop. WR Uni Pal brought me her women’s rugby team jogging bottoms because I didn’t have any pyjamas. They sat there and did uni work. I tried to stay awake and thanked them over and over because I was so touched. After they left, HK Uni Friend appeared with a bag full of my favourite foods, and a bagel and some pastries from the 24 hour bagel place in Brick Lane that we often go to late at night. She didn’t want any money, and had clearly been on a hunt around some shops. It was all so surreal and I still can’t believe that people were so nice. I don’t understand it. It’s just me… But it meant the world. It meant THE WORLD. For the whole of visiting hours, I was alone for ten minutes.

The next day, Uni Babe showed up at the start of visiting hours. After a few hours, Italian Uni Friend and another uni friend who I’ve only known 3 weeks (the one who was just referred to my cardiology consultant) showed up, and they stayed for a couple of hours. They brought me food too. But most amazingly, they brought themselves, and I was so stunned I kept thanking them and asking why. By this stage people were just telling me to shut up. My old friend from sixth form turned up shortly after they departed, with a hot chocolate. She stayed until way past visiting hours. I sort of pushed her into sending and email to get some stuff sorted, and she’d brought me some adult colouring sheets from a little booklet on PTSD and nightmares and stuff that she had which had a list of grounding techniques and stuff that she thought might help me. Anyway I’ve made my point – I had a lot of visitors. People were just so thoughtful. I really don’t deserve them.

Another huge thing was the fact that I made a group chat specifically to update people about the hospital situation. People kept asking, and messaging was so exhausting that it was easier just to post to them all at once. A couple of extra people asked to be added. I don’t normally update people on stuff, but it was actually really good to have their support, and everybody wants me to keep the group chat so that if I end up in hospital again I can easily let them all know. I don’t usually tell people stuff. I don’t usually say what’s going on. It was weird to actually do that. But it helped me, and I knew that in a group chat all my friends could support each other through whatever I told them, which made it easier for me to tell them how serious the situation got.

I also messaged Auntie Godmother, and called my grandparents to let them know. My parents never usually tell anyone, and they don’t want me to tell our family members if they haven’t, which often really annoys my family members when weeks later they find out how unwell I’ve been because I see them and just sort of mention it. This time I didn’t ask for permission. I didn’t care. I’m 20. I don’t live at home. It’s my life and they are my family too and they had every right to know. My parents didn’t even tell my little brother I was in hospital, and I needed to not feel invisible in this family any more. They deserved to know. Auntie Godmother is like a second mum to me and when she told me how much they love me (in response to me getting all slushy and telling them how much I love them and that their house feels like my home) I felt all the feels.

When I was let out of hospital, Uni Babe and Portsmouth Uni Friend sat in my accommodation with me for a few hours because I felt weird and told our group chat that didn’t really feel safe to be alone. Uni Babe helped me pack my bags up and carried one of them out to my mum’s car when she showed up. She calmed me down when I lost my cool at the sight of an ambulance. And she had the best idea anyone has ever had. She’d been thinking a lot, because the situation on the day of my admission had made her very uncomfortable. She started talking about finding a way to know where I am. She’d really been thinking about it – she mentioned bracelets that you could just press and they called 999. She mentioned tracking and stuff. In the end she posted on the group chat suggesting that we all downloaded an app called Life360.

It’s a tracking app with a group chat feature, which shows other people in your group an accurate location of where you are (each person pops up in a little bubble and it shows an exact location on a map which also shows a satellite image if you want). It also shows them the battery level of your phone, and whether or not your GPS is turned on etc. so that people don’t freak out if you don’t reply because your phone is dead or whatever. It lets you ask people to check in, and you can set it to send a notification to all members of the group when you reach a certain place. She wanted us all to download it so that if anything happened to me they’d know where to direct help to, and who was closest to me (I mean. HOW. Mature). I thought that would be a super bother, especially as the others might not have wanted their direction broadcast to us all, but six or seven people downloaded it and joined the family group Uni Babe had made (in which I am named simply as “Superhuman”). One person who wasn’t in the group chat even asked to join our family group thing on the tracking app when I told her about what a great idea I thought it was. I’m not sure how I feel about such an invasive thing  (MOVED BEYOND BELIEF but also a little stalked), but it is a really good idea, especially if I go for a run or whatever or something happens to me. I’m super impressed at how responsibly and practically my friends were thinking though, and how committed they seem to be. It’s so, so strange to me. I feel like we’re properly adults right now, I feel like I have an extra family. I cannot believe I have friends like this. I never thought I’d ever have that and I’m still terrified that like everyone else they will walk/drift/be pushed away. I’m scared of that. I’m scared to settle into the comfort of their awesomeness because they are so incredible that I know I don’t deserve them and I dread the day they realise that.

I never ever thought I’d have friends like this. Ever. And weirdly enough they seem to think I’m a good friend because I keep asking about them and trying to be there. They say it’s touching. But until they’ve experienced the kind of friendship that they provide, they don’t know the meaning of the word. I honestly can’t believe people care so much about me with no reason to. I still can’t understand it, I can’t accept it. It makes me feel unnerved and weird and guilty… But I like it. I feel like I matter a little.

I handled things differently this time and I felt like such a bother. But my friends handled it differently too. They were beyond amazing.

I never thought I’d see the day.