I need somebody…

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

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

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

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

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

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

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

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

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

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


… but it pours

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

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

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

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

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

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

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

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

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

“Look, I didn’t power through the struggle

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

And interrupt the vision

After everything I witnessed, after all of these decisions

All these miles, feet, inches,

They can’t add up to the distance

That I have been through 

Just to get to a place

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

I still ache from trying to keep pace

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


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

How did I lose it when I was right there?

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

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

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

No way but through.

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

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

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

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

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

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

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

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

There’s no way but through.

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


“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.

Just In Case

I’m not writing now because I have anything in particular to say. I’m writing because the day after tomorrow, my cardiologist is going to do a pretty new procedure (new enough for Google never to have heard of it, and for it to be a last resort that he didn’t want to do on someone so young) which involves remodelling a small area of Skippy (my rebellious, idiotic heart)… if my heart behaves enough for him to progress that far (while I’m under anaesthetic other heart things are happening first). You’re probably expecting this post to be about that now. Which makes sense, because you probably expect it to be my number one topic of thought at the moment. It isn’t. It has been blown far, far out of the water by… words, actually.

Before you read this, I need you to know that my life is great. I know that. I know I’m lucky that my situation is not worse, and that there are plenty in ways in which it could significantly be so. I am frustrated that my mind is beginning to let other thoughts shout over that reality. Forgive me for letting that part of me write this post. I am already embarrassed by many elements of this post. Ignore it, if you will. (Oh and obviously, because that part of me wrote this… Trigger warning).

The day after I was due to have this surgery previously, just after I was starting to function after completely melting down about its cancellation, I opened the front door while home alone, and a serious crime was committed against me. I had several uni deadlines the next day, and my achievement of the century is that somehow (after being with the police until late at night, and sitting with a detective and then a counsellor) in 2 hours, I wrote 90% of a 1,000 word essay (which I’d admittedly had over a month to write, but my head has been BEYOND a mess, and I haven’t been great at… humanning… hence the complete lack of posts), referenced the entire thing and wrote the last 300 words within 20 minutes, and submitted it with 7 minutes to spare.

Three days later it all became real, and while my parents continued freaking out and buying security cameras and locking every door and window in the house (too late for me, no comfort at all, couldn’t take back what had happened), I turned into a MESS. It doesn’t matter how. It doesn’t matter how worrying or completely crippling my mental state was, or the things the mental aftermath of that crime stopped me doing (accepting human interaction, leaving the house, tolerating my own existence, to name just a few. Just talking about it to the police on the phone in the days afterwards made me shake with fear and fight the urge to vomit).

And I’d love to tell you I got over it, but it continued to eat me. And slowly, just as my world was starting to turn again and revision (I call it revision, but actually it’s trying to catch up on the 160 hours of lectures I have to make up by the 3rd of May when my first exam occurs) began to become an actual thing… I went to stay with an individual I can only describe as my idol. Family. But also a heroine. My idol, since I was 9 or 10 years old. And I was torn down with words. Three hours. Every element of my life, of who I am, was attacked. Mainly my health. My Achilles heel. And I was left… Empty (and writing a suicide note at 3am, a feat I’ve never managed to complete before. If a kind dog had not limped into the room to demand a cuddle and let me collapse into his fur hysterically sobbing, I may not actually have made it much further along the road of my life).

I can’t repeat the words that were fired at me. They attacked parts of me I don’t wish to share here, parts of me I hide (and so, were commented upon incorrectly and in a VERY damaging way). They were enough to cause outrage and horror among the few family members who I repeated them to, even parts of the half of the family I will never belong in (they all have blood and marriage, I have a deed poll). Enough for them to understand and not tell me I was an idiot when, 24 hours later, my attempts at words were still washed away by great sobs that I could not control.

My brother in law had cured my fear of all human contact with his greeting hug earlier that weekend, and, suddenly able to find comfort rather than terror in human contact, I found myself wrapped in my oldest sister’s arms apologising profusely for my tears (because I don’t cry) an awful lot, and being told they were more than justified and she didn’t even know what to say. And you’ll be all “oh for goodness sake they were only words”. But they were words attacked and destroyed and invalidated every part of me.

An individual I until that point idolised, accused me of making everything up to get attention – my health issues, the serious crime (even asked me if I had enjoyed it)… (and then told me they ignored either topic because they didn’t want to “feed me”). FYI, that’s so ridiculously absurd, because the police have forensic evidence, and also I’m not sure you can fake NEAR DEATH or want to experience NEAR DEATH especially when you have counselling for a phobia of HOSPITALS. That individual blamed me for everything, every problem within my parents’ household, despite that individual not living there or seeing anything they were commenting on. Told me I resented them for almost dying because it took attention from me (actually, it was one of the most traumatic periods of my life, because somebody I loved almost died, and I was old enough to know that, and too young to be told what was going on. I still burst into tears at any reminder of it even now – one of the few things that never fails to bring me to tears, because I was too young for people to realise it affected me, and I’ve never really dealt with it)… And it went on, and on, and on. And I had no emotional ground to stand on, nothing to fall back on, to rest against, to hold myself together. I was washed out. Empty. I had gone there to be by the sea (which was AWESOME) and be with my brother in law (my brain decided he was the only safe human in the world for some reason) and to heal. I had gone there because that home always felt like my own. It felt physically and emotionally safe because of my brother in law and the support I had received there previously from my heroine.

For a few days, I was suicidal. The person described to me was not one I felt deserved to live, I was told over and over in that three hour conversation that basically people would be happier without me (in different words, but that’s what my self-hating brain heard). All I could do was cry, and sleep. My appetite is usually far greater than would be expected for someone my size, but I couldn’t eat more than a few forkfuls of food. And then I went back to a really weird place. A place beyond the hurt. A far more alarming, more troubling place, in which even my counsellor couldn’t really reach me. I shut down. I couldn’t think at all. I couldn’t function. I felt heavy. I stayed in bed, I slept all day. I’d try to get out of bed and just sit on the edge, no thought about what came next, no thought about how odd that was, just… Empty. Stuck. No idea how to be. And so I’d just fall sideways and, feet still on the floor, sleep again.

I didn’t wash for an embarrassing number of days. Didn’t even change my clothes. Couldn’t eat. No work. Goodbye “catch up/revision” plan. Guilt. Which everyone around me fought to push out of my brain. People told me that my heroine had been wrong, so wrong, that she knew nothing, that nobody else thought that at all (my heroine told me that people would say that because nobody wanted to upset me). I knew it was all wrong. Logic told me that. But my self hatred was so much louder. And it wasn’t alone any more. In a family that I have never felt I fitted in, I found an individual who made me feel more unworthy of involvement in that family than I ever have before, and the whole time they kept saying it was because they cared. They had, until that point, been my heroine. They had also been a little odd with me for a while.

I was more hurt that anybody could even imagine the things that person said, let alone someone who I had, at one point, trusted. Someone I admired. But anyway, my self-hatred had an ally. And it felt like a lead weight. Days passed and I had no idea when or how time had gone by. I cried. I slept. I sat and tried to function. And I repeated that process over and over. I could not. I just could not.

My mum tried to shout some sense into me, telling me I was going to fail my exams if I didn’t do something, telling me that I couldn’t just do nothing. I looked at my dog, my furry rock, and I felt nothing. I looked at my everything and I felt nothing. At that point I sort of melted.

After 10 days of hollow heaviness, I went to stay with Auntie Godmother and family. Instantly, I relaxed. Nobody talked about the crime (although Auntie Godmother was MY ROCK via text message through the weeks beforehand). Nobody talked about what my idol had said (a constant topic of conversation in my parents’ household). I slept. I ate almost an entire meal. I made lecture notes. I came back. My dog was my everything again. Revision began to occur.

Among the chaos I also broke my foot the afternoon before the conversation happened. After what was said to me, I had to be forced to get it x-rayed, because on top of my terror of hospitals, I also didn’t want anyone to think I was “milking it”. The x-rays showed that there was a piece of broken off bone just casually floating around my foot. The physiotherapist who reviewed the x-rays said the black line through my bone was a blood vessel, and that I should come back if my floating bone caused a problem. Today, with the assistance of 31kg of Labrador and a misplaced paw, that piece of bone forced its way out of my foot. A consultant looked at the x-rays and today over the phone said I should go back. So that’s fun. I’ll do that at some point… After the heart stuff. Because I can only deal with one thing at a time.

I’m missing London like someone has ripped out my beating heart (ironically my heart surgery will take place in the heart of the city I love). I miss my uni friends (haven’t heard from most of them, but that’ll be exam stress and my absence both… doing their thing). Seriously though I have never missed a place so much. It’s home. I miss wandering around it every afternoon, or late at night. I miss everything about it. I miss that skyline out of my window. I miss the buzz. I miss the miserable people on the underground. I miss laying in Hyde Park and wandering along the Thames. And I won’t get to live there, because while I was physically and mentally fighting to stay alive, I was out of sight, and my friends have arranged to move in together. And I cannot live alone (not safe, also now terrifying).

I’ve spent the last few days looking forward to Wednesday 19th of April for a very different reason than I did the previous surgery date (oh yeah, they also cancelled the surgery to remove Cedric – growth that bleeds a lot and needs OUT – because I’m too high risk to have an anaesthetic until my heart is… less of a poop. That was meant to happen last week). There is a 50% chance that, if everything goes right, this procedure will change my life. There’s also a chance it will damage my heart and leave it needing a little assistance. Before, I was planning long runs and dreaming of being able to walk from room to room without getting breathless, or without coughing pink froth whenever I lay flat, or without not being able to wear ANY of my clothes because my abdomen is so swollen with fluid… But for the past week or so… The thought of that cardiologist slipping… Has been my only comfort. Because I can’t do this anymore.

My conscious mind may forget to be scared that I won’t wake up, to juggle the stress of trying not to die (which, FYI, is a battle I frequently almost lose); on the surface I might not be thinking about how my health is so volatile it could take my life in a very short period of time whenever it feels like it, all day, every day. But the existential crisis goes on beneath the surface. It burns away silently. Along with the family stuff, and the uni work, and just the normal stresses of being 21, and knowing I will need somewhere to live, and feeling homesick but not knowing where home is, and only having £480 to live on until September because they cut my student lone since I moved to my parents’, and feeling like a burden, and watching my friends grow more and more distant, and LONGING to run again; also the insomnia and the PTSD about HOSPITALS from when I was younger, and the nightmares, and the wasted days and months that I lose to my health and hate myself for letting it steal… And it isn’t a lot, and unless you live with something that could kill you any time it likes, any day it feels like, or you’ve lived every moment of my life from my viewpoint, then you won’t entirely understand (but can potentially/at best relate to elements of it – because I never disclose enough information for full understanding of the… non-health stuff, which ironically is actually the hardest for me to deal with). But it all rumbles away in the background and it’s just… Broken me. How pathetic is that? How pathetic am I?

I guess I’m writing because part of me hopes this really is one of the last opportunities I will ever get to write again. I feel this great need for the people I know to be saved from me. And I don’t have the guts to do something about my existence myself. My body survived so many times when it shouldn’t have (I mean, I was in acidosis a couple of nights ago giving myself IVs and actually thinking that was it), but my mind… My mind is missing in action. Along with me.

If this surgery gives me back my life… If I go to sleep and 7 hours later (or more) Skippy has been persuaded to co-operate… I have no idea what to do. I won’t even let myself think there this time, because when that hope was taken away before I had been relying on it so heavily that I crumbled.

I’ll take either outcome, is what I’m saying.

A new beginning or an end.

I’m not fussy any more.

And whether Wednesday is the end or not… There’s no way but through how I feel right now, through states like this. There’s always another side. And if the other side sucks, ride with it, because there’s no way but through that too. We don’t have to find our own way. We never even see it coming. Just one day, we’re suddenly stood on the other side looking back. Reeling. Wounded. Facing whatever comes next. Good stuff, bad stuff, it all falls away because there is never any way but onwards, somehow. Unless you hold on. And right now… I can’t let go. I can’t let go of the hurt. I cannot find a way. But a silenced part of me knows… there will be one, even if I can’t even imagine it.

I don’t even have the energy to filter what I do or don’t spill out into this post. So I’ll probably at some point regret writing it as much as you regret reading this far. But thank  you all. For the support I receive here. For the comments that re-connect me to humanity a little bit, and the awesomeness of the blogging community – the nicest collection of people I’ve never met.

Testing The Water

After a somewhat un-anticipated and gratefully welcomed hiatus from blogging, I find myself sat in front of a computer screen with not a lot to say (cue one of the longest blog posts I’ve ever written. With its inevitable trigger warning). This time, you do not want to know the places I have been, and I feel too vulnerable in sharing them to ever let them escape my mind. The general reaction is usually that my mind resembling the scene of some sort of natural disaster(/desert littered with corpses that all look like me but represent slightly different parts of who I was) is fully justified by my health hiccups and the frequency with which the grim reaper and I make each others’ acquaintance. That general reaction overlooks one very important thing: me. It overlooks the fact that I am an entire person beyond my health, with an entire life that exists and functions beyond it.

I had a breakdown. I tried for about a month to cover it up. Making it to the end of the day was exhausting even if my health hiccups behaved, because I was pleading with the 99% of me that wanted my life to end, 24/7. And I wasn’t winning. There were so many reasons why. And this wasn’t a safe place to share that, because in various ways I’ve been used through this blog, and testing the water left me scalded. My mind became a prison then, me locked in a cell with thoughts and memories that over and over again reinforced my low self esteem until it built to a self hatred so intense I felt unworthy of everything, even food. The effort of that constant argument took everything I had. Until there was nothing left. There was nothing left to obstruct the 99%, so it became 100%. Only, that wasn’t what I wanted for myself. I wanted the situation to end. I wanted a life, or a death, and the former seemed an impossibility and the latter the only realistic solution. It wasn’t desire driving that feeling or that thought, it was desperation. Sheer, hopeless, defeated, desperation. And my family had no idea the true severity. They had no idea where I was, and where I am. They have no idea who I am. Life itself felt like a prison. I just didn’t have the motivation to try to escape.

In itself, that led to a whole new desperation. And that desperation coupled with misunderstanding and insensitivity that has led me to withdraw from the members of my family as much as I can, led me to counselling. Don’t judge me for that, I’ve already judged myself enough. I’ve already decided it was pathetic and my feelings are unjustified. But that woman single-handedly saved my life, and changed my life, in ways I never thought some words exchanged between two individuals sat in a rented room in a church ever could. I like order, I like to understand and process and let it settle and pack it away and move on. And there are things so big and traumatic and unpleasant that I cannot touch them with a barge pole. So I hide from my own mind and in doing so dug myself into a hole in which I was suffocating.

Sitting in that room I was very sceptical. I cannot talk. I do not open up. But desperation drives uncharacteristic actions. She poked the hornets nest, and my thoughts swarmed. Two sessions a week. Sting after sting. And the hornets only went for me. She understood. Nobody has ever understood. My parents won’t. Cannot. And that hurts. But to finally have someone who takes the mess and sees the same stuff as I do within that mess… Magic. She told me I’ve been through hell. And in (2?) months, we haven’t really got round to my health issues. I am so tired of being viewed as the unhealthy person that I have completely dissociated myself from my body and from my health. My body is not me. It serves me, albeit badly. My health is also not me. Take it away, and I have a life. Take my life away, and there is no health. Therefore, health does not equal life. They exist independently, and the lines are so blurred that people associate my face with a whole list of health stuff and medications and a medical history instead of me. In the past two days, I’ve suddenly started to force myself to function. I have found the free energy to plan, to aim, to set myself simple tasks and shut out the world and not care when my parents disapprove and just rebuild.

I turn 21 on the 9th of March. When asked about my birthday by my counsellor, I burst into tears. I had no idea why, I hated myself for crying, I felt stupid and I hadn’t expected crying to steal my words at all. But birthdays are a big deal when there have been so many times in the 364 days between them that you don’t think you’re going to see another one. Milestones matter, and birthdays are the only “everyone else” milestone my health has yet to take from me. They just matter. They are the one day a year when an individual matters, when people stop and acknowledge you and focus on you. And I squirm at attention, but birthdays for that exact reason are the one day of the year when I see how much I’ve lost. Not in terms of things or time, but people. People who think I matter enough. Because on the other days of the year, their absence stings, their failure to reply or the fact that they forget you exist is painful and understood and in my case justified because I am nothing special. But on birthdays, that absence and silence is enough to kill.

This time 365 days ago, I was in an ICU bed. I had been told, exactly a month before my birthday, that I wouldn’t survive a particular medical emergency again and at the trend we’d observed, it wouldn’t be more than a couple of weeks until it occurred once more; then the guy whose job it was to try and stop it told me he couldn’t. I broke, but nowhere near like I have broken now. I had support, in the form of a uni parent, who grounded my panic and was very right about worry being unsustainable. I walked along the Thames and I enjoyed every moment because I could feel “it” coming. I was in ICU for (6?) days. People forgot they said they would visit, so only one person did. (I am never around. Even now, I am not well enough to attend university and am only going for assessments. My friends see each other every day, they are constantly reminded of each other, they grow closer and closer and I drift further and further out of their minds. Its understandable but it reinforces the idea that I could die and there would be minimal impact to anyone anywhere) And my birthday loomed. The day before it arrived, I figured out how to walk again. My legs shook, but they held me up. And nobody would do anything to change my treatment plan (I literally have to force changes by making them myself, proving they are more effective after stressing about keeping myself alive and juggling the situation myself, and then my doctors are like – oh yeah ok that seems to be working tell me what it is lets stick with it. I have my back. I haven’t even seen one health team for a main hiccup this year. I’d rather go it alone. It feels safer. I know that I can be trusted with my life. Nobody else makes the effort in this field, I am just “a lost cause” I guess, to them). So I asked them not to move me to the ward as they planned to. I went to see The 1975 in concert in Brixton with a friend who completely unintentionally tore my mind apart subsequently. But it was the best night of that year. I felt alive. I had cheated death. And I had never felt so alive.

So the 8th of March… Has become significant to me. An occasion to be marked. An achievement, to be free. This year I’ve bought tickets for me and Uni Babe and Uni Pal to go and see Russel Howard at the Royal Albert Hall. When I was a teenager living on a paediatric ward tied to IVs, I watched that man’s gigs on my iPad ALL. DAY. LONG. I felt ashamed for buying myself a ticket, because it is something nice to do and my brain right now tells me I deserve nothing. It actually disgusts me to do anything for myself, especially anything pleasant. So I’m really struggling with the idea of birthday presents. I like to buy presents for important people in my life on my birthday to thank them for being in my life. But finally, I am angry at those people and the things they have done to my mind, or stood back and let happen, and I am so distanced from them I do not know what to buy. They don’t deserve the burden that I am. I don’t deserve their love, when I cannot return it. Because I cannot love. I am too damaged to do that, too afraid to ever let anybody in. I don’t even trust.

Skippy (my heart) is running me into the ground. I get breathless from walking the shortest way, I can’t breathe when I lay flat, I look about as pregnant as my personal tutor (who is actually 8-9 months pregnant) and I feel unwell. Really unwell. Occasionally Skippy’s displeasure seems to somehow trigger events that leave me on the edge of acidosis.

On the last Friday of February, in the middle of a lab, Skippy decided to do ALL THE ABNORMAL THINGS. My atria freaked, my ventricles subsequently joined the party a little bit. And the director of taught programmes happened to walk in as I was passing out. The guy terrifies me and I thought he was going to ask me to leave the university. He handled the situation so well. It actually made me make a truce with him in my mind. He knew my name, he knew me, he remained completely calm (on the outside) and he showed all present that he actually has a huge heart. He crouched next to me and just talked as my speech got really slurred and I stopped being able to talk and almost passed out on him. He saw I was scared, he told me to stop apologising and not to be embarrassed, he talked me into going to hospital, he held a meeting with my disability advisor and actually offered me support and asked how I was and said that he had no idea where I’d got the idea that if I missed any more uni I wouldn’t get credited with my degree (as I was told MANY times). The paramedic took up where he left off. I wanted to get the train home. All the paramedics said no. And the uni staff. I sat, and when the paramedics realised I could actually read my own ECG, we kind of started a bit of banter over the bits that were abnormal and upside down and suppressed and shortened and rogue.

When my P waves returned and decided to be the right way up, I tried to stand, and ended up back on the floor re-attached to ECG leads all over again and my ventricles deciding to occasionally do their own thing. Got carted off in a blue light ambulance, in which I was like “no I can stand yeah sure” and then passed out… And basically my heart just freaked everyone out. The ECG in the hospital suggested the arrhythmia had led to anterior ischaemia. We didn’t test my troponin levels (a chemical whose presence in the blood indicates heart muscle damage) because the doctor knew it would be high (meaning she would have to repeat in 6 hours) and remembered me from a very messy central line insertion in resus that went wrong and that her boss had to do, so knew how terrified I am of hospitals, and decided it would just stress my heart more if I stayed. I was told to contact my cardiology team and stuff. I haven’t. They know. I’m having surgery on the 22nd of March and I honestly can’t wait. I just want it to work. It’s a chance at the life I never thought I’d ever get anywhere close to again, and I am so unwell at the moment. Since then, I’ve hardly been able to human due to the effects of my heart being a poop. I didn’t think I’d notice any after-effects, but I really am.

My thoughts throughout the whole event went something like this:

Why is everything going black? Whoa, my chest feels funny. But it’s fine it’s not… OUCH… Should I tell someone? I’ll stand up… Well that was a bad idea. OMG THE DIRECTOR OF TAUGHT PROGRAMMES NO, Skippy really? Here? Now? It’s reading week next week and you choose HERE and NOW?! Quick, get out of the lab. Ok no, can’t get out of the lab. Attempted to leave the lab anyway. Then my lab partner got the lecturer leading the lab who was not as chill as the DOTP. NOT (DOTP) OMG. Skippy, what are you doing? I’m going to kill you. Ouch. Ok. Please don’t kill me first. Why? What are you even doing? Please calm down! This is not ok. I want to go home. I can totally stand, sure. Ok I totally can’t. Wow that ECG is very different. Crap. 

But anyway the point was the uni are actually being super amazing about everything. They had to ask if I was safe to be there and safe to study and if I wanted to interrupt my studies, but this time my actual school of the university turned around and instead of piling on the pressure, the director of taught programmes told me that I do have extenuating circumstances, I’m entitled to them, and that I don’t need to be a hero and show up to everything. Finally, they have the compassion to say that if I don’t feel well, that’s fine, that there are things that can be done to salvage situations that may arise from me missing too much. I didn’t walk home that day. I flew. I smiled genuinely for the first time this year. And uni work has a purpose again, now that there is no axe over my head, no risk of being kicked out.

My dog has been horrendously unwell (giant abscess in his mouth, vomiting & its friend from the other end, seizures, lethargy, suspicious mole, severe hip pain that sometimes leaves him unable to move, passing blood from both ends of his GI tract…) so we are all sort of starting to think about a world without my furry rock. And right now I don’t know how that world could ever have me in it, because without this dog over the past 4 months, I’d have done things. When you look at a fresh box of tablets and go as far as to reach for them, and a cold wet nose nudges your hand, and soft brown eyes stare up at you as a tail hopefully thumps away, it drags you back to earth. When you have nightmares or insomnia that leads to 1 hour of sleep a night, cuddling, and even crying into the fur of a labrador at 3am when your mind is dragging you to the afterlife, sort of anchors you to existence. He gives me purpose. He loves me in ways I do not deserve at all but no matter how many times I push him away or withdraw, he silently curls up on my lap, nuzzles under my chin, and goes to sleep looking so contented I cannot remove myself from his life. He’s my companion. He’s the only thing on the entire planet (apart from my counsellor) who sees me. The true me. And I can’t think why he loves that person, or why I am the only person he wants to be around right now, but that fights with my low self esteem and self hatred. And something has to.

Over the past two days I finally think I may be almost at the point of trying to get a life (I had no idea how frequently the title of this blog was going to be relevant to me). And with the help of a bit of heart surgery (which I am telling myself is going to allow me to run) and support from all levels of my university, maybe I might get there this time. The hope appears briefly and fleetingly, and I will not let myself hold onto it… Yet, it seems to suddenly be dragging me through. Because we all need hope. We all do. We crumble without it. I am too scared to let myself have it and wary of it when it arrives. I know how dangerous it is to give yourself further to fall.

The fact that I am sat here right now is a feat I cannot understand. I am not fixed. My mind is not healed. I still ache to cease existing. I still cannot cope. I still crumble. I am a pathetic being I do not recognise. I am foreign, even to myself. But finally, I am sat amidst what remains of my mind with some sutures – no idea if what I’m doing is effective or how long it will hold, but finally an intention where there has been the absence of anything close to an intention for months.

And I’ll say no more about where I am than that.

I am really struggling to share this. Not because of what it says, but because of what people can or may do with it – take chunks of it and post them without acknowledging their original source, take my words and publish them as their own… For some reason, that just makes me feel used lately. Violated, even. This blog therefore stopped being therapeutic and an attempt for me to try and process the easier things to talk about, and became a source of… Distress. For that reason, I probably won’t post for a little while. I am healing. And that takes time. I’ve given up everything non-essential to focus on the things that are. It’s removed a lot of damaging things that once seemed great to me. That includes social media, blogging, and writing. Maybe all of that will return. I guess here I am again, testing the water that burned me. Hoping this time it has cooled. Thank you so much for reading and following and commenting and liking – that goes a long, long way for me in terms of fighting against my low self esteem/ self loathing, and it means more to me than I could put into words. Over the past few months, those follows and likes and comments and views have also picked me up a little on occasion, so… Pat yourselves on the back. I’m always a little bit anxious that I’m going to wake up one day and you’ll all have retracted your likes and follows having decided that this blog is too poorly written or boring or repetitive to be worth your time. But so far that hasn’t happened, and you’ve done more for me than you know, without even realising. You pulled me back to earth a little bit, each and every one of you.

Edit: You’re doing it again now. 

Damage Limitation

I haven’t posted in a while because I couldn’t words. I couldn’t form thoughts full enough to pull words from, and when I did, I’d go to write and my brain would just shut down. After staring into space, absent minded (literally) (for what my brain thought was a second or two but turned out to be multiple hours at a time), I’d re-engage to discover that suddenly it was dark or light and a completely different time of day to that in which I had attempted to human.

I couldn’t deal with humans. It took me at least a day before I could even reply to messages, and my response would be one word. The happy tone of the responses, or questions asking how I was or what was up when I’d explained to those people the fact that I was basically breaking down… Would make me just drop my phone, crumble in on myself, empty of all thought and feeling, and occasionally a couple of hours later when my brain switched back on, I’d just sob. I have tried in vein to explain what’s going on inside of my head at the moment. And I fail every time. So I don’t want to acknowledge that. I’ll put up a smoke screen instead and shield the hollow void within me from view.

People I thought were my friends turned out to be so insensitive and selfish that other people were messaging me, outraged and angered in place of my own brain which remained incapable to feel anything at all in response to what it read. I completely gave up on people then. I wanted nothing to do with them, which may be a defence mechanism to compensate for the fact that people inevitably are exhausted with the effort of trying to handle me. Briefly, emotions occurred inside of me, with no warning but with total control, and I’d get angry and want to hit something, or just cry. This isn’t numbness. It is an emptiness. There is no heaviness, there is a complete inability to function, to think about even normal things like how to write or that I should probably eat at some point during the day. Guess my brain is just doing what it has to do to get by, and my mind is such a mess my brain just keeps switching it off before it just… I don’t even know.  Had I not stayed in Kent, I’m pretty sure I’d have killed myself by accidental neglect due to my own mental incapability. Around my dog, I could at least function enough to maintain my own existence. I typed notes for no particular reason, and retained none of the information. I look at them and it’s like somebody else typed them because I remember none of it. I sat my online uni exam, but have no idea how I did, because I haven’t checked any of my grades since the star of the semester (apart from the exam I sat with a pH of 6.9, because I was curious to see what passing out multiple times and should-be-fatal blood acidity did to my performance… 41% is what it did). Since then I haven’t written words. I couldn’t. There was nothing. Words. Not even plural – one word, even – would just make my brain empty itself and deaden and withdraw and collapse.

But today, I have a mind. And comments saying that’s great and celebrating show me that nobody understands the true depth of the disaster in my head. They assume it is better, they relax a little and back away. Or worse, they say they understand when they don’t, or that they are feeling worse and I should count myself lucky I’m not them. I… Can’t words about that.

But anyway, today I feel like I have a subconscious again – something in the recesses of my brain slowly thinking and processing thought and occasionally throwing them forwards into the void so that something fills it. There is a mind – it’s small and damaged almost to the point of being beyond repair, but it has returned. I moved back to Kent yesterday knowing I will definitely be here for 3 weeks. With my dog. And that let everything settle. Because it gives me time. Time with my furry rock, safe in the knowledge that he’ll be right by my side because he refuses to leave me. We go everywhere together, he doesn’t need me to put things into words to know how I feel, and he doesn’t produce words that tear down any shred of humanity I manage to regain. He just loves. Constantly, unconditionally, and relentlessly. He doesn’t criticise or point out negatives or flaws – I don’t think he even sees them in me. He supports me in a way no human can at the moment, because he can’t say stuff wrong, he can’t be insensitive, he can’t be selfish… And so I genuinely think that’s what induced the change. What gave me a little bit of my mind. Because honestly, that’s what it’s been like. It’s like my mind flew out of my skull and left nothing.

I’m not fully switched on, the deadness seems to be a default defence mechanism and it settles within me 80% of the time. But today there is the ability for occasional  thought – not an inward reflection or any thought at all about the cause of my emotional destruction or whatever, but thought in the absence of emotion. And thought in the absence of emotion is very helpful, because in the absence of emotion it is purely logical. In the absence of any ability to react to my thoughts, they can fully progress without being shut down.

Life has been happening. There’s stuff I want to share but my thoughts only function in the here and now – not in the past, not anywhere near anything that should induce an emotion, and not about anything personal. I functioned enough to wake up at 6:30 this morning and brush my dog and feed him and sort out his ear and let him outside (which he was very pleased about because nobody else got up until almost 9)… I can think about people that aren’t me. On Thursday it was Portsmouth Uni Friend’s birthday and she wasn’t doing anything. I couldn’t really deal with people, especially one that pointed out that I was walking faster and that I was clearly so much better (without understanding that my heart was as she said that in the middle of a very long run of arrhythmia, blissfully unaware that no, I wasn’t better, just broken in a different way). But I know what it’s like to have a rubbish birthday, and I also know that this person’s brain is very critical and would overthink itself into feeling neglected by everyone and end up drowning in hurt.

So I persuaded her and Italian Uni Friend to go to Nando’s for dinner, and then I took them to Harrods (I bought a book called The Happiness Project I’m a tiny way through it and I’d recommend it to anyone). And then she wanted to go to Winter Wonderland, which I was bored of (and we’d already walked from South Kensington station the very long way round to Harrods (we went the wrong way) with my heart stressing itself into oblivion and my requests to slow down or whatever overlooked because you can’t exactly see tachycardia or arrhythmia and so my level of “uh-oh” was not appreciated at all). But I went again because she’d never been. And then we got the night bus back to Mile End, and over and over again on our outing my brain just shut down at words that were said with no bad intention at all. Words that were said happily and meant harmlessly… But that were just… Not helpful. Wrong, to my brain at that time. Words that made it feel disconnected or misunderstood or just… Human interaction. But when she turned to me and thanked me, and said her birthday had been awful to start with but that the evening had been amazing and it wouldn’t have happened if it hadn’t been for me… A tiny part of me was like that’s why. I had only got back to London that morning, and knew I was leaving the next, so I was slightly more able to function, and that helped not only me, but someone else. Which is weird. That I helped someone else. Because I really, really can’t help myself.

This blog is dull and boring and full of chaotic post, but occasionally (so I’ve been told, but still don’t quite see) it contains a little wisdom. Unfortunately, it is also a place for all the crap in my head that needs a place to come out. It’s my safe place, my comfort blanket, sometimes my distress call, sometimes a smoke signal, sometimes just a place to be me when there’s nowhere else in the world that I can be. I hoped that someone might take something from it, that the words I wrote might resonate with another mind somewhere. I never imagined that anyone would take the things from it that people have. A couple of times, the wonderful human over at this blog mentioned words I wrote in her blog and the effect they had on her. Other people have posted links to my blog in posts before, but for the first time in my life, I was quoted. And that was weird for me. But… To read in words that some stuff I wrote to a person could help them, when I am powerless over my own self at the moment… That made those words mean something to me, which rarely happens.

Outside of this blog, the words  say or message to people occasionally leave them lost for words of their own. One of my friends calls them nuggets of [my name] wisdom, and people come to me when they’re in a crisis, often providing a distraction from my own junk (which currently doesn’t work, so I’m pretty sure they must all hate me and take it personally, because I know some of them overthink a lot and take everything personally. I just can’t deal with that right now. I can just about deal with “hello” and that’s it. Last night I got completely furious and almost shouted at my mum… for no reason. That won’t be helpful to people who want help.) But anyway, one person started writing it all out and compiling herself a book of stuff I’d written to her in messages, for the times when I couldn’t be there. And other people started telling me to write it out properly into a book myself, expand on ideas, and to share the points that I made because apparently at the age of 20 I have somehow figured out a lot of stuff that people normally don’t until they are a few times my age. And that… Embarrasses me. All of it. It’s flattering, and I don’t know how to deal with flattery. My brain cannot associate anything positive or good with  itself at all. It thinks it can’t do anything right, and it doesn’t have the capacity to be proud of itself, so it can’t digest stuff like this at all. If you’ve read this blog for long enough, you’ll have a pretty good idea of how little I think of myself, and nothing ever changes that (except ceasing to think or being in the presence of my dog).

But I started putting stuff into a word document a little while ago. And slowly, it has built up. And so I guess… I’m taking advantage of the presence of some sort of ability to function, and I want to start doing things that will make it easier for me to build a nice little nest in my head in which my mind can hatch and grow and develop. There is no desire, no fire pushing me to change stuff, but a little subconscious thought that knows that there are things I can do to make my mind less likely to crumble and dissolve over and over again. I’ll tidy my room (I also want to rearrange it). Hug my dog. I’ll make myself do stuff that doesn’t matter at all – catch up on uni work (but not yet, because just writing that made my brain stumble over itself). And… I’ll start a completely new project. It won’t be a book. It’ll just be a very long word document with no pressure and no deadline and no anything. Something to do. Damage limitation. Don’t really know what this post was. But hey. Now you know I’m still alive.

Finally, I am just about sort of almost in a place where I am just about sort of trying to get a life. In an hour, I’ll probably be empty again. Right now, I’m this numb, heavy, hurting, volatile emotional mess who comes extremely close to ending her own existence and then just becomes too dead to do so. But that emotional mess is a person (just). And people can human. And humans can salvage themselves.

I hope.

Worth It

I did that thing where I stay awake all night again. I was so stressed about my coursework that I stayed up until 4:30am to complete most of it, at which point I was relaxed enough to consider sleep, but decided there was no point. I had a brief moment of calm, and I sat on my bed and just let the dust inside my mind settle around me until I could see clearly.

If you read what happened last time I ran, then you’ll think I’m completely stupid for what I did next. If you understand what running does for me and how much I miss it, then you’ll also understand why. I took a chance on my body, the morning after it had plunged me into the early stages of acidosis.

I was up and out of the building before 7am. I stood outside the tiny supermarket next to my accommodation waiting for the staff to unlock the doors, wearing running trainers and running gear again. I was so dehydrated from the short walk that my mouth was dry. I bought a litre of drink and quickly drank an entire bottle. It was cold out. So cold that by the time I got to Mile End Park I was shivering. It was still dark. There was hardly anybody about, and I liked that, because there had been so many runners about on my previous attempt to run. I found my little patch of grass, I opened the timer on my phone, and I jogged much more lightly than before. 30 seconds at a time this time (10-20 seconds wrecked me last time but that was not going to stop me progressing with the running plan). I couldn’t help it. I needed to. I didn’t know what else to do. And sat here afterwards, I can’t think what on earth it was that was breaking me, because I feel like the weight of the world has been lifted. Most of my friends aren’t even awake yet, and I’m sat here at 7:30am with my hands feeling tight and like they’re burning as they slowly warm up and regain feeling.

Processed with MOLDIV
Bottom left: Walking through the park in the dark. Bottom middle: “My” field/ running track. Bottom Right: On my way into the park the canal looked kind of like a mirror (there were a lot of sleeping ducks too). Top: Took that photo as I was typing this post. Watching the sun rise again – I beat it this morning! 

After the first lap of 30 seconds, my vision went. I couldn’t see the huge numbers on the timer, and this presented an issue, because I then noticed that everything else was blurring, and the lag in my vision was much worse than normal. I decided this was probably mostly due to the almost acidosis situation that I’m stuck in. I decided I’d stop after five times. It didn’t kill me. It felt good. Every time I blinked my vision stayed black for a while afterwards, and I started to feel light headed, but not enough to alarm me this time. On the last lap I was running and my legs just gave out under me as everything went black. I managed not to hit the floor, but decided it was definitely time to stop. I felt my pulse, and it was stupidly fast, with random forceful beats between beats so faint I could barely feel them. As I walked home it hit me. There were huge gaps in time, every time I blinked, everything turned black for a while. I felt significantly lightheaded by the time I made it back to my floor of the building. I drifted along the corridor bumping into the walls, and fell straight onto my bed.

I’m feeling more and more like I’m going to pass out. I feel sick and I have a foggy headache. But I can handle today now. I can handle uni and work and going home and all of it. It doesn’t bother me like it did before I stepped outside. I no longer want to run until my heart explodes. I no longer want to bail on my own existence. Because for 150 seconds (ok add about 20 to that) I ran. That’s all it took. And it’s given me so much. My friends will be annoyed. They’ll call me an idiot. My mum would shout if I told her. But I left myself three hours before lectures this time, and I didn’t know how else to handle things.

Sometimes the things that are good for us are also bad for us, and sometimes we take the bad just so we can take advantage of the good. My body is rebelling now but it is going to rebel anyway… May as well enjoy something. May as well reclaim a piece of my life. So I ran. But I wasn’t running away. I was running towards something. I was running for change. The immediate change seems to be that I’ve outraged my body (but not to the same degree as last time). But it’s also transformed my emotional state rather brilliantly.

After my last run, I thought I’d never run again. The aftermath was horrible and terrifying to be honest. It was my body telling me no. But I’m the kind of person who gets up and tries again even when the odds look pretty hopeless. Odds mean nothing. They are often defied. I decided to carry on with my plan and increase the duration of running, I just cut the repeats. And I took a chance. I don’t know what I expected to happen. I am, for some reason, surprised to find myself sat here drifting towards unconsciousness, and yet at the same time I fully expected that and it’s just part of my running routine. Hopefully I won’t pass out in lectures today. I should probably ask someone to run with me in future, but I quite like the time to myself. When I’m running, my mind is quite a pleasant place to be for a change, and I like the room to just… Breathe.

The trees are starting to turn the rich colours of autumn as the seasons change. It was so cold I could see my breath, and my hands felt like two useless stumps on the ends of my arms because my fingers were so cold I couldn’t feel them or really move them. It was so, so cold. And it was so, so good. I love wrapping up warm and my heart doesn’t like the occasional yet intense heat of the few days of summer Britain experiences throughout the year. It was refreshing on so many levels. At one point I just stood there looking up the sky like a compete idiot, and suddenly the early morning sun shot light into the sky and a flash of orange appeared through a break in the clouds like the sky was on fire. I liked that. I’m forcing my body to let me be the person I want to be, to have awesome experiences like running before the sun comes up…

I have just as much to do as I did yesterday, but it isn’t breaking me any more. I’m not stressed. I’m super spaced out but it kinda feels ok. I also feel a little bit superhuman. Just a little bit.

I might go and sit in the library and try to get some work done before my lectures today.

There was no way but through.

Only Me

(Trigger warning, I guess. Seriously guys this post is like a grenade about to go off)

For days I fought the urge to end it all. I cried as I concluded that the end was the only way to cope, because damn it I didn’t want to go. I didn’t want to go and yet I could not find a conceivable way to stay. I tried to think of ways to make the future ok, and I couldn’t. There is no way to avoid the unpleasantness. Everything else on this blog is nothing, NOTHING, compared to what they are asking and expecting me to go through. My mind crumpled at the though of any other way. At the thought of what it knew it had to meet, the tears came, and my world imploded, my thoughts crushing each other under their own gravitational pull until denial smothered something over the vacuum that was left.

There were three options:

The easy way, the way that no part of me could find a negative towards. The “anything”. The option I spent the longest thinking about, that made my heart sink as my mind concluded it was the only thing to do – end it all.

The hard way, the blind and hopeless hoping that will lead me through hell on earth, that will break me in every possible way. The future I don’t want to meet. The kind of life I don’t want to live. The unpleasantness I do not know how to face – let them try. Let a more specialised team of doctors try a more advanced and specific version of something that was so unpleasant before that it killed who I was and left me scarred in ways I cannot explain. Another form of death, but one that makes everyone else feel better, a death that involves keeping my pulse (hopefully) but that will leave nothing left to save. Hope with nothing to hold. No guarantees that it will even work. No idea what it will drive me to – anything, anything to escape the suffering that I know it will induce. Left with no life. Left in a worse state than before. Alive but for what purpose? Alive with no life, nothing left, traumatised again… Not a price I want to pay.

Somewhere in between. The stuff I need to do but have been told I can’t. The option that will make people judge me and walk away and… Make things bearable – change.

I have nothing left to lose. I am heading for a route that is going to break me, a route I am not prepared to take but have no option but to… But that knowledge in turn drove me to a long and logical thought process that concluded the only way to escape, to cope, to manage, was to end it all. Only I didn’t want to die. I don’t want to die. I have been through too much to go now. I don’t want to do that. But I don’t want to stay for the hurt and the fresh memories and the future that will haunt me. And the easiest thing to do, the easiest thing… Cannot happen. I cannot let it happen. I want to end everything, and I was so serious about the thought of this that I cried each time it went through my mind. And so anything – anything… I will do anything to stay alive, to stay whole.

I am just one small, insignificant human. Nobody and nothing depends on me. There is no loss to society if I self destruct. I am small enough that my absence would not leave a ripple in the tiniest pond. And so this is it. The start of what may not be the end, but what many would call stupid. It isn’t stupid though. It has been well thought through and is preferable to a deliberate act to remove myself from the planet. I am desperately trying to cling to… My life. To me. I do not want to seek the end. I do not want to be driven tot that and I am trying to find another way, another thing to give the hell that my life is about to become some sort of meaning. This, now, is my sensible. I need control over something. This is the way where the fewest parts of me die. And if it takes me, then I go with a smile on my face and a fire in my veins.

I’m going to run a 5k. “Big deal” so many of you will say, but my fellow third wheel knows how disastrous this is. I walk 20m and my body protests at the moment. Any exercise wrecks me. I cannot run. I should not run. It is dangerous. It will destroy me. But so were a lot of things supposed to. And it isn’t a case of if I can run. I will run. I am done with limitations. I am done with being unwell, with being the ill person. I am done with hospitals. I have chewed through the leashes that my situation has imposed and I am so, so done. I don’t care about the consequences. They will be no worse than what is waiting for me. And I will be happy right before they occur.

I need something to live for. I need something to hold onto, to focus on. I need to punish myself and reward myself and discipline myself and damn it if I feel like I’m dying then at least I know that I’m still alive. I tried to run fifteen metres a few days ago for a train and became dangerously unwell as a result, passing out multiple times on a train, losing the ability to breathe properly for several hours, chest pain… And it didn’t bother me. Because my legs weren’t bothered by running, which made me realise that I can do it. I felt like I was going to pass out again and I… Stood up. I stood up and I knew I was going to pass out but I felt in control. I was pushing my body until it broke. It was not going to break me. It is not going to break me. Somehow I walked – floating, drifting, disconnected from my body and fighting for consciousness. Nobody stopped me, I got a few worried looks, was asked if I needed an ambulance. But I was not going to a hospital. I am not going to a hospital. I will not be an inpatient again. I am not being that person anymore. I cannot live that life, I cannot meet the things that I will have to meet – because I can decline admissions but once I am admitted they have me, they can try whatever treatment they like because I am too scared of them to say no. I am staying on the outside. I don’t mind suffering. I do not care.

I am taking a huge chance on my own body and I am going to start training. I’m going to buy a road bike and a turbo trainer as soon as I move into my new accommodation, and I will hide it from everyone else I know. I am working on my own training regime, building from “couch potato to 5k” except I am building myself up to couch potato before I can even start there. And I don’t care if it hurts, I don’t care if every workout makes me pass out. I don’t care if fluid foams from my lungs or if my stomach becomes so distended I can’t fit into my clothes… I don’t care if my heart freaks out.

Because there are another two options: Fade (or maybe not fade at all) happily or hold on until I’m empty.

In order to keep living I have to let go. I cannot do this. I cannot carry on the way things are. I have to let go of the thoughts that hold me back, of the things that hold me back. This body will learn. It will. It will get over itself and it will do what I ask of it or so help me it will die trying.

And if this works, if somehow I manage to start swimming more than 25m at a time, and can last more than a few minutes on a turbo trainer, and build up to running that 5k… That medal at the end of the race… Will be one great big middle finger to the world. And then I will tell people that I ran. It will fill me with so much… Something. (And then I will go back to sailing and aim for nationals and finally get to sail my laser – I need this, I need something to hope for, something to aim for, something to live for).

Initially my plan was to train until it hurt. To train until I physically couldn’t anymore, until I collapsed off of the turbo trainer in my room and couldn’t move. Until my body could not physically power me any more. Until one day it learned not to fall. I felt like I needed punishing, in a weird, weird way. That first night after the appointment I slept on the floor because I was so disgusted at what I was considering that I felt I didn’t deserve a bed. I felt like I needed control, like my life was gone and the future was nothing and my way of taking that control back was to push myself. And I would motivate myself by withholding food until I had trained for that day. But that is no longer the plan. The plan became safer, more realistic – it starts with walking and it includes four rest days a week.

I told the friend from uni who I met with the other day. I told my fellow third wheel. I am hollow, I am broken, I cannot feel, I cannot think, I cannot face anything or anyone other than those two people, Aunty Godmother (and family) and my Godfather (and his family, who I met with before I saw my friend). I am fighting, so hard, to stay alive. And not against a physical illness this time. Against myself, against my own logic. My own fear… My own dread… And to my surprise my two friends supported that plan. They knew that for me to say hell, it would be bad. Watching me in the ICU so close to the end and me later saying it was just what happened gave the some idea about how crap things are about to get for me. They were more than supported, my fellow third wheel is helping me – he’s keeping me grounded within my body’s capabilities and is working on a training plan with me. My friend from uni was beyond supportive of the whole thing. Nobody else will be. But these guys know how much I’ve cried, and they know I never cry. I cannot talk to them, I cannot talk to anyone. I am not ok. I am broken. I am writing this because… Because you guys need to know that things are going to change.

I have a diabetic penal arranged by a charity called Beyond Type 1. And she (also my age, and living in Scotland) is the only person to whom I think I can face discussing a health hiccup again, even admitting they exist. I don’t know what this blog is about to become. I don’t know what I am about to become, but things are about to change. I don’t want to be that person with all the health hiccups anymore. I don’t want to be incapable. I don’t want to face the hell that a team of consultants are about to ask me to go through in hope it might help one health hiccup a bit, with nothing to try and stem the arterial spray of myself that I am about to haemorrhage. I am going to lose everything. At the thought of what is going to happen I broke down… And so I cannot think about it. I need a distraction. I need to be who I was. I need to find something. I need to find a fire to outburn the one that is razing me to the ground and calling me to end it all.

And I am willing to risk going up in flames.

Time to enjoy today’s purchases – two running magazines and more alcohol than it is healthy for me to consume (and some non-alcoholic stuff which… Won’t be consumed tonight).

I cannot cope at all. I cannot cope. I can only drink, right now. And continue to hug my dog and watch films with my fellow third wheel as we cook the Thai food we bought earlier…

I don’t know how often I’m going to blog. I don’t know what I’m going to talk about. But I kind of want to ask you to stay, to keep reading if this is a blog that you follow, because… This means a lot to me. And I think that the doctors were wrong. They were wrong when they said I would die all those times. They were wrong when they said that exercise would kill me (swimming messes me up but hey). They were wrong when they told me that there was no way things would improve, because somehow my superhuman body managed to get itself to the point where I can now walk. They were wrong. I defied their odds. And now it’s time to make my own. Stick around. Stick around to see picture of a finishers medal from a 5k race. Please.

And when I’m less broken, I will come back to this blog, and I’ll be here too.

I’m trying. I don’t know what else to do. I am torn in half and being beaten up in a blender of my own emotions, and it is taking all I have to resist running to the grim reaper, running from everything I cannot face.

You have to understand that there will be nothing left to lose no matter what happens. If I go through their hell with the feeble amount of support I currently have (or even with any form of support) I will probably kill myself to end the suffering and make it stop, or at very best end up dead and numb and devoid of all thought and feeling, and therefore be plunged into a living hell. If I end it all, then I will end up in actual hell. Or I can try to live, to carry on, and I don’t even know what’s going to happen in terms of going through hell, but there is no life to lose. If I go, I will be no more dead than I already feel right now. And hey, right before, I may even feel alive.

I am fighting so, so hard, to keep existing. But I am not giving up. And it is so difficult, it is an almost physical feeling. It is eating me alive, it is awful. It is destroying me.

I’m a mess. I’m messed up. This is messed up. I never thought I’d have to go here. I never thought I’d hear a doctor suggest that idea again, let alone go through with it. To save what? To leave me with a life I don’t want to live? Damn I wish I could talk to one of my uni parents right now, either one. I need some logic. I need someone to listen without reacting. I need help. And I don’t want it.

I am doing this alone.

I am hiding my exercise regime, hence why I’m not signing up to a gym or putting anyone in the possibility of having to watch me die in the gym at my accommodation. I will shut myself away. I will conceal the worry and the panic. I will push through it. And when the pain and the incapability and the weakness and the exhaustion have gone and passed… Only I will remain.

Only me. 

I am trying to get a life. But this time I’m running my way out of a rut. I will not give in to this feeling. I hope.