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.


I have spent the past few months living privately, locked inside of myself in many ways, trying as best as I can to be nobody and nothing, to tuck everything in and scrunch my eyes shut so that I might pass a little easier through the nastiness. I have no idea why I have chosen now to stick my head above the parapet. Perhaps it’s because I no longer care if an incoming projectile rips it off. Perhaps it is because even though I want to melt away, the feeling inside of me is growing, and it wants to be heard… and I need a little help to shoot it down. Either way, here we are. Or rather, here I am. Exposed (and by that I simply mean… present).

Since my second year of university I’ve laid on a table under a bright light and the hands of a doctor six times. April. June. July. August. Twice in September. Each time I thought and hoped it was the last time, and so far it hasn’t been. My last procedure was on the 29th of September. I went to a clinic appointment unable to hold my own head up (three days after we’d tried to reprogram my pacemaker and see if that helped) and a few hours later I was at the start of a 5.5 hour unsuccessful attempt to make my rebellious heart behave. It left me… With a very sore chest. Unable to sit up. Unable to stand up. Unable to walk. My heart was really, really unimpressed. I’d gone back to university in a wheelchair, able to walk short distances and occasionally leave my flat under my own steam. I suddenly couldn’t even lift my head without the world spinning. Since then I’ve had to use a wheelchair to go everywhere. The physical symptoms don’t bother me. I sleep a lot, I am exhausted after an hour of being out (despite the wheelchair), I can’t walk far at all, I get frequent palpitations, my vision fades to black, oh, and Skippy hurts to an alarming degree at times (that’s settling down). That I can handle. My body has imposed clear limits, and it doesn’t give me the energy to fight them. It often doesn’t give me the energy to get out of the wheelchair to get to bed, or to eat, or to lift my head. I’d rather not waste what precious little energy I have on worrying about how I feel physically. I have thoughts about it, but they aren’t for here. My summer has involved an awful lot of unpleasantness, weeks in hospital, multiple admissions, mental health crises… Things I don’t want to remember, let alone share.

Before I go any further, I want to explain something. I was bullied as a child. First because I was clever, and then because of my health issues. I am painfully shy, and I hate being treated differently because of my health. I hate standing out, I hate attention of any form. I learned at a young age that being different was very bad, and I try to hide away in plain sight to avoid my differences being sharpened and used as weapons against me. I have, for a little while, struggled with being in large groups of people. I am insecure, I am self conscious, my self esteem if quantified would be of a negative value. I hate myself, I feel like I bother everyone I interact with and so I try to do everything alone out of guilt and self loathing. I do not value myself enough to prioritise my own needs or feelings. I play down everything. I hide. I hide how I feel both physically and mentally, to blend in, to fit in, to wrap myself in that comfort. I am used to nobody having any clue how lousy I feel. I am used to being able to sit in a lecture hall with my peers oblivious to the catastrophe going on inside of me, or the fact that unless I attend a hospital within a few hours I’m not going to wake up the next day. I smother layers and layers and layers on top of any weakness, to compensate for the fact that people associate me with vulnerability because of my health issues.

Now, I am not the first person to ever be in a wheelchair. I am not the only person on my campus to be in a wheelchair. But I feel like an alien. People are not subtle when they stare. I wheeled myself across campus the other day past people wearing giant foam breasts to raise awareness of breast cancer, and I was the one people looked at (because y’know, society). People I have known for a long time suddenly treat me like a baby. Strangers treat me like I am incapable or even stop me in the street and demand to know why I am in a wheelchair. I can’t wheel myself places because my heart protests and I almost pass out, so suddenly I need people, I have to rely on people, I have to ask for help, and I have to let people help me or I can’t get anywhere. I have no independence at all. Since I was a child I’ve always been told by my doctors that I am just like everyone else and for the first time in my life I feel like… An alien. And I’m not. It’s just two wheels on a chair and if you think about it that’s kind of cool. But after the first few stares my brain suddenly ran away with its insecurity. Suddenly I cannot hide. I can’t hide my vulnerability. I have no choice but to face it. And I also have no choice but to wear it publicly. I cannot accept it, but now I also cannot escape it. And I cannot deal with that. It feels like the whole world is staring any time I go outside. People treat me so differently. And so… I became very, very reluctant to leave my flat or go anywhere on campus. London is not made for wheelchairs. It really is like being in space. And I feel like an alien every time I step outside.

Shame floods me. My skin does not crawl with discomfort, rather it writhes while I shift uncomfortably inside of it, trying to shake it off and cease to exist. When my friends are pushing me, I smile and lose myself in their conversation, with Bastille playing in one headphone to distract me from the situation I am in. But at university, that bubble falls apart.

With all of the above in mind, it is story time.

After three (I think three anyway) weeks of university, I still had yet to attend anything. I’d just had a procedure on my heart, which had ruined everything, and that should have been my biggest bother. But it was out of my control, and I realised and accepted that and let it go (I think. Maybe I’m just totally dissociated. Anyway). We had a tutorial at the medical school to discuss a case study we had been given to research and prepare information on. Attendance was compulsory, so not only could I not hide my vulnerability, but I could no longer hide that exposed vulnerability from my peers. I was going to have to face humans, and that was a big deal.

Firstly, while it is a 15 minute walk to the medical school, the pavements to get there are bumpy, the drop kerbs are at places more like cliffs, and even those pushing me commented that it was not appropriate for a wheelchair. There are buses, yes. But around here the buses are packed full of people. So many people that, because they refuse to move, there is no way you can get onto the bus with a wheelchair. And if you do, there is usually someone there with a pushchair who simply refuses to move, so everybody gets very grumpy at you until they collectively make you leave the bus so they can be on their way. None of the tube stops round here even have escalators, so a lift is far too much to ask. It meant I had to bother someone, knowing that pushing me all that way was not only an inconvenience because they’d have to get me, but also because it was going to be like a gym session (their description of the event, not mine).

I swallowed my self loathing and managed to find a very understanding human who was more than willing to help me to the medical school. Two, in fact. I thought getting there was the hard part. Uni is wheelchair accessible, it’s a medical school so y’know, they would obviously have thought about access for disabled individuals. Great! Until we got to the main entrance and for the first time in three years I noticed the flight of steps to get in the front door of the building. There was no sign for a disabled entrance. No other doors. No lift. Just steps. One of my friends went in, because she didn’t want to be late for her tutorial. I died a little bit inside, but was kind of relieved to not have to see humans. I told my other friend to leave me. She didn’t. We stood there staring at the mountain between us and the medical school, until someone on his way out happened to know that there was a ramp around the back of the building. So we set off. We found an open gate some way around the corner, and assumed, as it was the only gap in the wall, that it must lead us to the wheelchair ramp. I was so embarrassed about all the fuss, about standing out, and about the trouble to my friend. I was relieved to finally have a route inside.

We wandered around the back of the medical school, found the ramp, and proceeded to the door at the top of it which was… Locked. Never mind, we had access cards. My friend scanned the card reader. Nothing happened. She tried again. Then she began hammering on the door to the people we could see through the window. Our fellow students could also not unlock the door. Random people I had never met were staring out of the window at me and trying to unlock the door. I died a little more inside, and wanted to cry.

Eventually someone somehow made the door open. We went inside, only to realise that neither of us had any idea where the lift was. There is a very large and pretty grand staircase in the middle of the old building, but you have to go up 3-4 flights of stairs to go up one floor. There was no way on earth my heart could do that, and no way I could be carried. By chance, a passing member of staff happened to think she’d seen a lift once through some doors, and another friend said she knew where it was. We found it, and went up to the designated floor, where my other friend took over pushing me.

We entered the corridor and it said that room number 1.21-1.27 was one way and 1.27+ was another way, or whatever. My room number was pretty high, so we went the way the sign told us. The doorway was so narrow that the wheelchair barely fit. The corridor was wide enough for it and nothing else either side. People piled in behind us, because there are a lot of students and not a lot of building, and we walked along the corridor towards the room. We were one room away and then… steps to get to the other rooms. A member of staff told us to turn around and go the other way, where there was a ramp. I was so embarrassed. There wasn’t really room to turn around. In turning, we ran over her foot and almost took out someone else. Everyone had to reverse out of the corridor so we could fit by. All eyes were on me.

We went the other way round and found the ramp. The corridor was stuffed full of people, who had nowhere to stand but on the wheelchair ramp, meaning I couldn’t get to my room even though my group was already inside. I wanted to melt away, but my friend also had a place to be so she shouted “Look out people, wheelchair!” I wanted to cry. She then threatened to run people over if they didn’t move, and because they had nowhere to go, she ended up following through with this idea, and running over several feet and hitting several legs. People looked down at me with shock and outrage as they were rolled at and over, and I just turned my music up even louder and tried not to cry.

Finally we got to the room, after struggling to get through a huge heavy fire door. We knocked on the door and the tutor opened it… And the room was tiny, there was barely any room for the desk and chairs, let alone me. She made people re-shuffle and I felt so so bad for making them move. I spent the next hour trying to get over my patheticness, but I was dreading leaving.

Afterwards, nobody I knew was going back to the main university campus, so I had no way to get back and was too exhausted to go to our workshop that afternoon. Eventually my friend went out of her way to go back to the main campus so that I could get home. She has her own health issues, and walking will have exhausted her I know, and so I felt so guilty. I got back to my flat, shut the door, and crumbled. I felt very, very different. Wheelchair accessible and actually practical are very very far apart.

I was too unwell to attend anything else, so I didn’t. I met with my personal tutor last week, who completely changed the way I see myself and my mental health, and understood my wheelchair issues via his own personal life. But then yesterday I had a meeting for a group assignment we are working on. The night before, I panicked at the thought of having to leave. I cried. That morning trying to get up, each time I thought about leaving my flat I curled up under the covers in a panic, trying to literally hide from everything. It took me an hour (and the music of Bastille) to leave my room. I made it to the door of my building, saw other humans, and froze. Like… Completely freaked. I couldn’t do it. I’d already mentioned my anxiety to my personal tutor, and he got it. He understood it. But suddenly it was controlling me. My group, who I had only met once before, came to rescue me. We went to the newest building on campus.

As it was new, it had two wheelchair entrances. Amazing! Both are behind huge support pillars, so you have to be good at steering. Neither of the doors currently work. So there’s that. On our way in, a member of staff managed to help figure out the door. I spoke to my group about my anxiety and things, because I was basically having a breakdown at this stage, and they told me to contact my personal tutor. So I sent an email about how our university seems to be as accessible to disabled students as the International Space Station is to the average human, and the effect this was having on me (I had stopped sleeping, was panicking and crying at the thought of attending the workshops I had to go to the next day – aka today, and I was terrified of people and public places). Satisfied that I’d taken a step in the right direction, we eventually finished our meeting and went to leave.

But there was no member of staff. Also, this time the “out of order” disabled doors would not open at all. Neither of them. We pressed the button, my friends tried to rip the things off their hinges, random other humans stopped to help. So much fuss, with me at the centre of it… I was mortified. The only way out was a revolving door. I’m not sure if you’ve ever tried to get a wheelchair out of a small revolving door, but we very swiftly learned why there is an alternative entrance. It was not easy. It was not dignified. It was not subtle. It was not great for a shy person.

On getting outside, my group all went one way to get the tube to wherever they had to be, leaving me to somehow make my way across campus, which I have noticed is on a very very slight hill. I figured I could wheel myself. I made it maybe 20 metres before I almost passed out. By that point, I was in front of the science building where some of my friends were in lectures, so I stopped because I had no choice, and decided I’d just have to wait. It was 3:05. Their lecture finished at 5. There were a lot of people walking past and I was stopped in the middle of nowhere so they at least glanced but mostly stared (or at least that’s what it felt like). I wanted the ground to open up and eat me. It started to rain. I started to cry. For the first time in a long time, I wanted to die. Really pathetic. Totally ungrateful. Totally uncalled for. But I was more serious than I ever had been. I made a plan of how I’d do it, even calculated how much of an overdose it would take to be untreatable. And I committed to it. I was genuinely going to do it. I sat there for an hour and a half, until my flatmate realised the situation, told me I was an idiot for not saying something, ignored my statement that I didn’t want to bother him, and made his way across campus to rescue me. He found me listening to Bastille, and I thought I’d be called pathetic and stupid but people just said that the entire thing was a horrible. I was planning to go back to my flat and take all the medication I have. Instead, I got into the room, thought about doing it, and that was enough of a comfort to stop my tears.

My friends pulled through. They were outraged at the university’s provisions, and aware of how shy I am and how much I hate bothering people, and therefore the effect everything would have on me. One friend came round. Another video called me. My flat mates took me to buy alcohol because all I wanted was alcohol or painkillers so strong they might numb emotional pain too. Instead, I bought comfort food. My other friend spoke with me on the phone until past midnight.

I made it to my workshop today after several freak outs and an hour of trying to persuade myself to leave my flat again. We went into the lecture hall and I looked up to see people looking at me. Of course they were, I was at the front of the room and they were probably curious. But shame flooded me and I just wanted so badly to blend in. There was nowhere for a wheelchair in the room. I could have got up and sat in a seat, but I was scared that people would think I was faking using the wheelchair, so I stayed put. The only desk I could have used was a stand alone desk in front of everyone facing all of my peers. Thankfully, the lecturer sat at it. I tucked myself on the end of the front row, which meant I had to sit across the front of the stairs and block that passageway. In my mind everybody’s eyes were on me and their collective gaze made me squirm and want to hide away. I came home and hid. I’m still hiding. I don’t ever want to leave again.

I have a workshop tomorrow at the other medical school campus 3 miles away. Buses aren’t an option, and neither is walking. The taxi fare is £39.50. Each way. The university said they would try to fund that if I could provide a doctor’s letter, but my cardiologist has not responded. And I’ve developed crippling anxiety about going out in public places so… I’m not going. They may as well have set me lectures on the International Space Station, because it feels about as feasible for me to get there. I feel like I’m looking down on the life I used to have but I’m thousands of miles away from it. Hearts are not appreciated enough. If yours works normally, just… treasure it.

A lot of people would be ok with the situations above. A lot of people won’t see anything wrong with them. You probably think I’m spoiled or ungrateful or stupid or pathetic or all of the above. I think those things of myself for feeling this way too, so you aren’t alone. I went to Bangkok in the summer. That was not wheelchair friendly at all, so I couldn’t leave the hotel and the heat also meant I couldn’t actually leave the bed because of my heart. Plenty of people have it far, far worse. I am also not the only person on this campus in a wheelchair. But I’m not handling it right now, and I’m really ashamed of that. I just needed a place to… words.

Thoughts, anyone?


This post is less interesting to read and more… Life. There is an expectation for me to post, and absolutely no desire to do so on my part. I’m prioritising my attempts to get a life (which, after my birthday for a brief period were going extremely successfully). Things are tough right now. I’m going through a lot, and I have needed, and continue to need, space to fall apart and re-assemble into a human that can deal with this situation. Forgive me for that (and probably for the standard of this post). Also, trigger warning (I’m getting so sick of writing that so sorry if you’re sick of reading it).

My birthday was great. Seriously, it actually was. My smile was genuine for the first time in months. I was given the present of human presence, and managed to gather six other humans to join me for a meal out in Covent Garden (London), and then a trip to a gelato place (where I had the most delicious crepe ever and they cut the ice cream into the shape of petals so it looked like a rose in a cone) and then a slow stroll along the Thames. Many photos were taken by my friends so I have memories to hold on to. I have never laughed so much in my entire life. I felt 21. I was with people, I was back where I loved to be. I felt like I mattered but could not comprehend why… And I was so stunned I just couldn’t believe it was real. 

So reality hit me. Or rather, Skippy (my heart) teamed up with reality, and I was rendered unconscious on the London Underground at a tube stop that means both uni and (until the new year) home. I was beyond devastated. My heart was being an arse, basically. As the paramedics wheeled me through the ticket barrier before carrying me up two more flights of stairs, I made them stop so I could tap out my Oyster card. This was, and still is, the achievement of the year for me. After the paramedic telling me that if he let me out of his ambulance my heart would probably stop and he’d just be following me round London all night scraping me off the floor (he also told me I’d just have to have a second birthday and do it all over again just without the hospitals), I ended up in A&E with three of the best humans to be in A&E with. They stayed, they entertained, they made me laugh, they calmed me down. They went out and brought back McDonald’s at 2am. They were totally chill. 

My heart was totally not, but that was fine because my surgery is on the 22nd, so I was told I really did need this procedure, and to take it very easy until then. This procedure, if it works (50% chance) is going to change my life. The reluctant and cautious hope that this slow and involuntary realisation injected into my mind, filled the cavernous void of nothing that had opened up within me. And there was suddenly… A point. There was a point to me again. There was a point to existing, or at least, to resisting the urge to terminate my existence. There was a purpose for every action. Because there was a future. A chance at one. 

I’ll be able to attend lectures at university, I’ll be able to walk about without sleeping for six hours afterwards, and I won’t be worried about the ticking time bomb I feel lives inside of me. No more fear. Or at least, less of it. And maybe even at some stage, a chance at running… A chance at a life. A chance to be closer to normal than my heart has let me be for a while, instead of sleeping all the time and breathless and swollen and wheezing and unable to even lift my head sometimes. And that picked me up. For the first time since November, I was an almost fully functioning human. In three days I did 24 hours of work. I made lists and organised myself, and got into a routine. I started showering every day again. I cooked my food from fresh instead of buying something factory made. I let myself hope. I lost myself in this protective little bubble that surrounded me even in the tough times, warding off the worst and keeping my mind (and my mood, most of the time) intact. It was like having a force field and a superpower; a presence that I welcomed with relief. And that’s something I never let myself do.

It’s something I shouldn’t have let myself do. It’s something that is never safe. In letting myself climb and be lifted, I set myself up for a fall.

My surgery was cancelled last week. A “life or death” maternity case needs the slot. Two lives lost without it I guess. All of the above stopped. I lost myself in a void. I very nearly terminated my own existence. I very nearly drew my own blood. I sat in the darkness on the floor for three hours and cried. I lost everything, because I lost the hope I had accidentally been relying on and I was in no state to survive the fall. There’s a time when I probably would have explained my feelings here, explained why I was ashamed and guilty for attaching enough value to myself to feel upset at all and all the rest of it. But it still doesn’t feel safe to share here at the moment. Needless to say I have relapsed a little. Less so now. Denial is my home again. And it’s where I’m going to have to stay. My fellow third wheel and I are going to London tomorrow for the day – we’re going shopping and to see a film that he’s seen but that knows I really want to. We were meant for be going for a drink, but I can’t do that now. My entire family is against me going. If I go to walk anywhere or do anything they tell me to think of my heart. But life is about both mental and physical health, and I cannot just sit festering in my thoughts. 

I don’t want to be limited. I physically feel, and am being treated, like I just turned 80. I need to go places, see people, let my mind feel 21. Yes my birthday annoyed my heart, but I was on a knife edge and had been planning on ending my life. I’d go through all the heart drama again for another evening like that. When I’m thinking of other stuff, I forget that I’m scared, I forget that I’m lost, and I forget that I’m hollow. I hate my body right now. I’m angry at it. It’s all that people see, and now those people are joining forces and helping it to limit me. Every part of me rebels against that. I won’t stop everything, why should I? Because a cardiologist took away my hope? Should I die inside to stay alive? What is the point in existing if you have no will to live? I’d top myself before I ever made it to the 19th of April, without continuing my walks in the woods, and the chance to socialise (because this house is NOPE).

I was meant to be having surgery to remove Cedric (growth in my nose) on the 12th of April, and now can’t have that general anaesthetic, because my heart is an unreliable poop. Cedric has now grown to such a size that he obstructs my entire nostril, and is also pressing on a nerve, resulting in nerve pain that runs from my sinuses right through my face and down into my front tooth. Cedric was meant to be removed ages ago, and the surgery has already been delayed 3 times because of my heart. 

My body continues to rebel. Along with the new Cedric pain, Skippy has decided to intermittently hurt in ways he never has before. Through to my back, numb left arm, neck, jaw and then pain in my jaw… Accompanied by the urge to vomit and a tiredness so overwhelming I cease to function and then sleep for hours. I tell myself that I am an idiot, and it will stop, and that there’s nothing that can be done until that procedure (which can’t happen any sooner because it is such a complex case that it needs specialist people present)

And if they are rebelling, why not let my immune system join the show? Yesterday I changed my infusion set to find a small volcano in my stomach (a red lump with a hole left by the cannula in the middle of it which usually closes up pretty quickly). Grossness occurred, confirming my suspicions that somehow my immune system had allowed my subcutaneous tissue to be infected by a supposedly STERILE cannula inserted into a THOUROUGHLY DISINFECTED site. So I went to the GP today. I’m meant to have antibiotics at home because my immune system loves to welcome visitors into my body so often, but I ran out, so she prescribed me enough for my acute issue, and then some more to replenish my supply. She investigated the hard lump that has formed deep below the little volcano, and concluded that it was a collection of infected material and/or gloop about half a centimetre beneath my skin which was pushed much deeper by the cannula and has decided to set up home. If it doesn’t go down within a few days on antibiotics, or gets worse, it needs to be operated on. BUT… MY HEART + surgery that isn’t specifically for it = NOPE.

I’m dealing with normal life stresses. Family dynamics and issues that make me feel… like hurting just to replace the emotional pain with something that can’t last. Behind my health, I am a whole normal person, and most of the time normal life stuff is harder than being unwell. People forget that. I can’t talk about my emotions right now. They are… for my mind only (and my counsellor, a fairly recent and priceless addition to my life) and I cannot deal with being misunderstood right now. 

Reading all this, things aren’t even that difficult. I just no longer have the strength to remain resilient, and letting myself go through the process of feeling what my brain decides to feel stops me breaking down again. I’m trying to find my motivation. University are being absolutely amazing and offering me support that makes my life so much less stressful, so that makes it slightly easier for me to try and think about uni work. But honestly, all I can do right now is hug my dog and play Sim City and go for long dog walks with my surrogate mother (next door neighbour). I’m trying to get a life. But before that, I need to just figure out how to get to a place where I can start. 

I know it’s only four extra weeks until the surgery…

But 4 weeks is a long time to be scared.
Despite featuring in this post, my heart just isn’t in it. I hope you’ll all understand if I just stay away for a while. This just isn’t… Me, right now, and it’s hard enough trying to act more ok than I am on person, I just want to withdraw and just… Rebuild. Possibly. Because honestly, I’m on the edge of existing or erasing that existence right now, and I’d like to try and go with what’s right by everyone else, instead of what’s easiest for me. Which is going to take… Everything I have. 

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. 

I Can’t Hide It Any More

I can tell you now that I probably won’t post for the next few days (to compensate for that, this one is very long). I won’t post because I’m struggling to post now, struggling to think and tolerate the combinations of words I keep typing and deleting and typing and deleting. I am self critical at the best of times. Right now, I hate everything about myself, and everything that occurs as a result of my actions. Right now, I’m almost in tears. But there is a panic. Not a pure panic, an emotive panic (only way I can think to describe it); my mind is backpedalling and scrabbling for something to hold onto and stamping on a brake pedal attached to wires that have been cut. Because I go back to university on Monday, and for weeks that has felt very, very far away. Until now. Until Monday the 9th of January is the day after tomorrow, and I have to start planning things, and even attempting to find out what time train to catch and thinking about the journey I have to make stresses me and makes my mind have an internalised panic attack until it shuts down and I smother some other thought over reality to stop it breaking me.

I can’t cope. With reality, with people, with functioning. I am trying so so hard to find it within myself to try as hard as I occasionally manage to, but I know things are going to fall as my sinking mind throws things overboard to try and keep itself afloat. I know this, because it’s what I’ve done for months now. And it’ll throw this blog overboard. And even when I try to post, I’ll end up sat for an hour getting frustrated at my inability to write what I want to say, what I want to project. Today I want to be upbeat and hide the way I feel, and I also want to let it out, and I can’t balance that in a big long string of words.

(T R I G G E R     W A R N I N G – I’m getting as sick of writing that as you will be of reading it, so I’m putting it in different ways now).

Today my mum and I left for London in the morning and packed up everything in my accommodation. I didn’t do anything. I sort of sat there and stress-ate my way through an entire packet of cracker-type biscuits. I looked out the window, because when I turned around and looked at the chaos everywhere, my brain couldn’t see a way through it or around it and it got so stressed I almost cried. Logic deserted me. Logic would have told me that we had a system and we were sorting things and it was all going to go into the car and it just needed to be organised better. I don’t know what the rest of me thought, because it just caved in around me and deserted me as well. Pathetic. Illogical. I don’t like not understanding myself, I don’t like not being able to think my way out of a thing. I don’t like being out of control… And I was. I am.

My mum forgot bin bags to put my bedding and stuff in, so I had to walk back to where she parked her car to try and find them. She’d parked down a small side-road next to the ambulance station which is behind my accommodation. Thankfully, there were no ambulances outside, because they tend to induce panic, given my history with hospitals and the fact that they are always at the end of an ambulance ride. I found the bin bags (not that you care, don’t know why I’m even writing this). I had popped into the shop on the way to buy a bunch of food to eat (my subconscious reaction to the failure of any other alternative coping mechanism that didn’t involve not existing. Maybe if the monster was fed, it would stop trying to consume my life? No. But anyway). I was carrying this bag of shopping that had everything in it, and I was breaking and hurting and desperate and giving up… And my heart wanted what my heart wanted. And my head couldn’t rationalise well enough to tell it no. And I’d passed so many joggers and it broke me EVERY time. So I ran.

Only ten metres (actually, only past the ambulance station). I accidentally picked the perfect place to be such an idiot (even though in that moment it didn’t feel stupid, and it still doesn’t even though I know it was) because on a quiet, empty road right beside a building full of paramedics (where no humans other than those paramedics would see you in the mortifying situation you may end up in) is the PERFECT place to take a risk on a flaky organ, right?

I ran. I just ran. I couldn’t not. Honestly, I could not stop myself. Sirens were screaming in my head like STOP YOU IDIOT STOP. But there was this smile that I couldn’t not smile, and this huge, overpowering voice just shouted back BUT FEEL THIS. FEEL THIS. RIGHT IN THIS MOMENT I DON’T FEEL LIKE THERE’S NO WAY. RIGHT IN THIS MOMENT I AM OK. FEEL HOW GOOD THAT FEELS. WE’RE RUNNING, MONSTER, AND YOU CAN’T CATCH US. And I went with that voice. And it felt like I ran for minutes and minutes. Just a short little burst of jogging, and my mind was a bearable place to be.

But my body was not.

This seismic event happened in my chest as my heart rebelled, apparently siding with my brief and apparently fickle logical thoughts. I stopped running when I hit the pavement again (yes, I ran in the middle of the road, on the wrong side of the road, and I couldn’t see if there were cars coming, and they wouldn’t have seen me until it was too late, and I realise this now but right then I didn’t care). I walked, but there was this smile on my face and this spring in my step and this BUZZ running through me. My chest hurt. It HURT like it hasn’t for a long time, and the tremors of my cardiac earthquake returned to my no-longer-home with me, but my goodness I felt free. For the next few hours my heart hated me. It shouted at me and I ignored it. The inability to cope took over, sitting there while my room was sorted was exhausting, because at the moment even passive things like trying to watch TV are too much for my mind. And I kept just feeling trapped, not in the room, but in myself. I wanted to tear myself apart and let myself out. I wanted to put my hands on my head and tear away the hair and scalp and bone and whichever parts of my brain were being so illogical and unhelpful and destructive, and I wanted to release the suffocating, withering remains of myself. And I couldn’t. I withdrew. I curled up. I stared out of the window, but joggers kept running along the canal and through the park and every step they took was like a dagger in my mind and I just didn’t know how to… Be.

Driving to London this time wasn’t as stressful as usual. Leaving was nowhere near as much of a lifeline. I didn’t realise how tense and stressed I’d get at certain landmarks along the journey back to university until I drove right up to campus knowing I didn’t have to go there and was suddenly free from it. I half expected the ground to open up and swallow the car as we drove away, knowing I would never step foot in that area of that building again, that I’d just ended a part of my life… But it didn’t. I couldn’t care enough about anything to feel about it. I felt heavy. We went back to my parents house. My dad had driven up to collect a car load of stuff and it was piled high in the hallway when we walked in.

And then my little brother and nephew got home. They’d been out and bought lots of packets of sweets just to get the free temporary tattoos inside. Now, I’ve wanted an actual tattoo for a while. I have multiple scars inflicted by surgeons and scalpels, but only one that fills me with the kind of shame you’re not meant to have about your scars. It’s a vertical scar from my wrist up my forearm for about 3.5cm. Most of my scars represent moving on, healing, strength. But this one was the result of medical negligence, and I have flashbacks to feeling every snip during the surgery that made it when they messed up y’know… The whole, not feeling two men cutting about inside of you thing. The surgery was to fix a mistake. It was an emergency at the end of me going for six hours of tests and ending up ventilated in intensive care instead. And it’s right over my radial artery, and when 16 year old me remembered that, it became a “if you ever want to die, just cut along the dotted line”. It’s super sensitive and dead to all feeling in different parts, but it hurts just to look at sometimes. Because during the events that left me with PTSD, I slept with my teeth to that scar, wanting to bite down and end it all but too afraid to sin. So I hoped in my sleep I might sneeze or bite down. And that’s what that scar was, my way out. My saviour. My only saviour. But people always notice. They immediately assume it is a self harm scar and so they judge. Doctors, university colleagues, strangers who don’t even know me. I wear a lot of wristbands on that arm to try and cover it, but they move, and people see it, and I see it. And then my nephew gave me a temporary tattoo of the wonderwoman logo that is about 5-6cm long. I was going to put it where the cannula goes in at my infusion site, or over my heart or on my chest – somewhere only I knew where it was. But then I saw the scar. And for so long I’ve wanted a tattoo of an ECG trace to cover that scar, or an anatomically correct heart (I am undecided, hence no tattoo… Also, because of my health hiccups, I can’t get actual tattoos, but hey, I’d do anything right now).

I put a wet sponge over the paper and waited for the image to transfer, and when I pulled it away, I laughed. And then I shouted YOU CAN’T EVEN SEE IT! OH MY GOODNESS YOU CAN’T EVEN SEE IT, IT’S GONE! LOOK! I was so excited. The scar is a good few millimetres thick, and it looks like it’s raised. It’s a different colour from my skin and it’s so obvious I didn’t think anything would hide it, but it was hidden under the longest part of the image, just poking out a little between the inverted peaks of the “W” but only I would ever notice its subtle presence there. And it was gone, just like that. Gone. To such a simple solution. It looks almost like a real tattoo. So my nephew gave me three more wonderwoman tattoos, and my little brother said he’d give me any more that he got (the designs are varied between each packet of sweets – today they bought about 20 packs each so…) And I went and bought myself three packets of candy sticks that I didn’t even want, just to try and get more things to cover that scar. The boys came with me, my little brother and I walked along together talking, and he carried my super heavy bag of shopping, while my nephew literally ran and jumped all over the place a few metres in front of us. (My little brother put a batman tattoo on his nipple – keep in mind what happens to this area of a human being when they get cold – in a rather unfortunate position which means that batman’s trousers look rather… Full. Especially when my brother is cold. He is currently wearing five temporary tattoos, but this is the only one I cried with laughter over. I am a child).

I went online and bought some better temporary tattoos – they even had them in ECG traces, so I got some of those, and some other cool designs, and a new rucksack to keep my laptop protected on my SUPER LONG commute to uni. Which I then had to start thinking about, because I have to do it on Monday. And then everything was real. And I realised how much I don’t want to go back to uni. And the dread set in. Heavy, crushing, dread. And then panic. And stress. And so many feelings my head is like a pressure cooker and I could not words. I am beyond not ok. But leaving uni or even taking a break isn’t an option. My parents made that clear. They go on about how much money I will have wasted. And I worry that going back is going to push me into an s word that will waste so much more than money – it’ll waste all the time I could have had left on the planet, all those years. And I’m not strong enough to promise I won’t do that.

The commute is fine if I can get a lift to the train station 5 miles away – then it’s just a half hour ride to a train station, a short walk to the tube and 10 minutes later I’m at uni. But when there’s nobody around (i.e. on Monday) I have to walk for 5-10 minutes to get to the bus stop, and I can’t be late because the buses here run every 30-40 minutes. Then after 20 minutes on the bus, I have to walk to the train station. I haven’t lived here for a while, I can’t remember the way, not from that direction, not on foot. I’ve no idea how long the walk will take, but I estimate around 15 minutes. Then I get on the train. Then I get on it, then walk to the tube station, then have to battle with all the stairs to get to street level… And my heart is going to HATE that. The whole 2 hour commute (including the waiting around and stuff) is like heart hell.

I get chest pain just walking slowly around the house at the moment. Getting to the shops (which isn’t as far as the bus stop I need) left me breathless and puffy with fluid. If my other health hiccups join the party and almost succeed in killing me in the fashion that at least one of them is prone to doing once every week or two (which made it a near impossible effort for me to get to uni when it was a one minute walk that literally only required me to step out of the front door and cross the road to get to campus), I won’t make it there. So then I got annoyed at the person who handled the housing situation so poorly that I ended up with no option other than to live alone. And then I forgot that, because my mum asked Auntie Godmother if I could stay with them sometimes (I’ll also be staying with my grandparents a lot, she suggests). And I just felt awful. I didn’t want to be there. I didn’t want to bother them or make her say the things I’ve driven my mum to feel about me.

In the back of my mind I am aware that there are the three assignments I have due in on Friday, which would be ok if I even knew what they were or had been to more than 4 lectures since the start of November. I have no notes for either modules because I’ve been drowning in my mind for a long time and hiding it far too well (news flash – I can’t any more, I give up hiding I just can’t any more it’s too much energy that I no longer have, it’s all coming out in the wash and people are stunned and horrified).  I don’t even know how to deal with even thinking about work. And then exams will happen. And the world is a scary place right now in general and… (see where my mind goes with all of this. I’m a joke).

Then I thought about hospital appointments for NO APPARENT REASON. I have to rearrange the ones I was intimidated into just letting people book. Only for one health hiccup, because I could only deal with trying to see one team, but they made a load of appointments with different specialists in that area and I’m like NO THANKS. I have to rearrange them for days when I’m actually in London (all my health care has been based in London for a few years because I’m complicated and London hospitals are like… The top of their field in the country, most of the time), which is how things used to be. No more early morning appointments because I AM NOT getting a commuter train (standing for that long will overwhelm Skippy, and I will pass out in a heap of arrhythmia. No thank you. I’m struggling enough to even take all my medications at the moment. Some of them aren’t taken not because I don’t want to but because my brain just doesn’t seem to have the ability to think about that stuff at the minute, it’s too focussed on trying to find a reason to… Want to be alive.

And I hate that I have this attitude. It isn’t me. It isn’t who I am. Who I am is still in there shouting that I am so lucky and at least I’m not in a wheelchair now and I can walk, and at least there are buses and trains and ways to get there, and a two hour commute could always be longer. But something else throws a load of dread and stress on top of that. Every time I get it together enough to think more logically, I overthink and the stress sets in. I’m trapped inside of myself. And I hate the person I have become.

I just want to be with my dog. I am so sorry that I’m so pathetic, and so sorry that this post was so long. Thank you for reading this. Sorry. I’m trying so hard and yet failing so much more spectacularly. I don’t know why. It’s so pathetic. Nobody needs to tell me, I already know.

I Let It Run, Because I Can’t

(Trigger warning). Shortly after writing my last post, I began to question everything. Mostly the point of my existence. At first, only that. I got desperate, I was scared because I couldn’t talk myself out of a route that I don’t want to take.

I was so scared that I messaged My Fellow Third Wheel (who was seriously alarmed because I never reach out to people or start conversations like the ones we had). He was so concerned that he called me in the early hours of the morning on his way home from work, and we both sat in out parents’ living rooms on the phone to each other. I told him everything he’s missed during my withdrawn lack of communication. He’d bailed on our plans to meet this Tuesday (as he has with all of our recent plans to meet) and my brain couldn’t handle being let down again, so I had given up on the idea of contacting him.

I woke up at 5am, still in the living room, with my dog (who didn’t ask why we were going downstairs, and didn’t question why I decided to turn on lights and sit on a bean bag in a cold room instead of on my bed, and sat there pawing at me and nudging me when I didn’t move for a little while as if he could tell that I was sinking and he didn’t want me to drown. He just wanted to be there. No conditions to his affection. Just my existence. I needed to feel love like that right then). My Fellow Third Wheel spent most of the day with me today just hanging out (by “today”I mean Friday 6th, which is when I started writing this.). I needed a friend today. He knew that. There were several hugs, and as he left told me to please never do that again – to talk to him instead of shutting the world out, but it wasn’t voluntary (and by the time I realised the spiral had begun).

When I catch my little brother alone, he wraps his arms around me in a great big sibling bear hug and we attempt to walk around like that, one of us having to walk backwards, like we used to when we were little. He’s taller than me now I think, and rarely spends any time with me (or even any time noting my presence) because I cannot compete with my nephew for his acknowledgement.  I walk into the house after almost dying and spending time in an ICU and usually he won’t even look up from his games console, and if so it’d be to tell me to get out of the way of the tv. But recently he’ll hug me. And he’ll let me walk over and hug him. Turns out he’s more soppy than he’ll let on, and when my mum remarks that he doesn’t let her hug him he just smiles and squeezes me a little harder. And after a day of fighting with my own mind – exhausted by how much of an effort it was to stay on the planet when every thought told me my presence was of detriment to it… When he pulled me into a silent hug I couldn’t escape from, he didn’t have to say anything at all; he doesn’t say a lot to me when my nephew is around (or most of the time, actually), but that hug reminded me that occasionally he gives a crap about me…. And he picked the right moment to have such an occasion.

Today I tried to do whatever it took to hang on. I wanted to take whatever risk I had to just to find some sort of anything that gave me a break from the hurt and the urge. And I miss running. People tell you not to miss who you were after circumstances change, but you do. I miss sport. It’s a stupid time to yearn for it so badly again after so many years without it in my life (ok no I never stopped missing it, after my brain crawled out of the void it was lost in it threw itself into blogging and then uni)… I don’t want to run for the sake of running – nor to achieve something or to be who I was.

I want to run because I remember how it made me feel. I want to run because when I ran late last year (for the total few minutes I was able to that entire three times) I could deal with things that I hadn’t been able to cope with; I thought through them and processed them while I ran and I felt like I could handle life. I felt like I could get through that entire day. On all three occasions. And that’s what sport used to give me. Not a reason to go on, but a means to go on. I have plenty of reason to continue with my life, and my mind just cannot find the method. I am so lost and hurting that I cannot figure out how to carry on through this state of mind. I don’t want to try and run from my problems – that got me here. I want to try and run with them. But my mum was highly alarmed. Everybody says no. Not until my heart surgery is done, not while I’m so unwell because of Skippy.

I decided I’d go to the shops. I had a delivery of a bunch of books I’d ordered online the day before because I thought reading might distract my brain and maybe progressing through a book might feel like an achievement. That didn’t work as planned because I lacked all motivation, so I thought I’d try to buy something that might make my mind feel less awful. That plan was going well, until I put on my running shoes and filled myself with this buoyant hope that I could RUN there. My nephew went to the shops with me in the end, which forced me to walk. This simply meant that instead of taking a risk on one health hiccup, I took it on another (I am aware how destructive this sounds. Unfortunately a lot of the stuff I want to do, my body doesn’t want me to, but I was desperately trying to appease the biggest monster, and I was so desperate I was willing to cease existing to do that, so compared to that, stupidity was a good job. If that makes sense). I bought all the comfort food I could find. Screw my non-functioning beta cells, I was going to binge. I thought nice food might make me feel better. It didn’t. I bought cream cakes and sweets and I couldn’t stomach any of it.

I am willing to do anything to try and find a way for my mind to hang on. Such stupid things (running, binge eating sweet stuff). I am at the stage where I am so desperate I am considering really, really stupid and reckless options to stop me giving in to my thoughts. (As I write this I am suddenly considering drugs, alcohol, anything that might stop me feeling. Anything that might pick me up).

But earlier this evening I was at break point. I was caving, and ceasing to exist felt like the only way to make this stop, which was such a tough call because I don’t want to go. I was scared because I was being deadly serous. So I did something I rarely let my mind do. I let it hope. Or rather, I let it hope unrealistically; I let it dream dreams that will probably (and some almost definitely) never come true. I let it fill itself with imagined versions of those things, in hope that it would pointlelssly try to chase them and in doing so lead itself out of this pit of danger it has thrown itself into.

I am usually realistic in my aims – I try to be because optimism is as damaging as pessimism – the higher you lift yourself up, the further you have to fall (I learned that during the years I lived in paediatric wards. Every day I convinced myself I was going home tomorrow and every tomorrow I fell apart. So I started telling myself and learning to accept the idea that I would be there for ever – anything less than that was a huge positive, there could be no negative, only an improvement on the situation I was prepared for. So when I was told “weeks” it was suddenly a huge advance instead of a huge step back from my “tomorrow”). Anyway. I let my brain run, just to see where it would go. And it went here:

  • I want to go to a trampoline park, because my heart has never been in a happy enough state to let me to go to the ones near us, and I used to LOVE the trampoline my parents got rid of (my 10th birthday party was trampolining). If this heart surgery works, once I’m all back to normal, I’m celebrating by going to a trampoline park. (So many unrealistic expectations right here – normal, for starters. It’s been years. Years, since Skippy let me exercise without a tantrum).
  • I want to run. Everywhere. I’ll run to the train station (about 5 miles away from our house) instead of getting the bus there when I need to go to uni. I’ll run every morning through the woods or round the roads I used to run with my dog, and I’ll take next door’s puppy because I like to run with a dog and mine can’t any more. I’ll run everywhere. I’ll never walk again. I’ll feel so free and so happy and so… Me.
  • I’ll join a gym with a pool and swim every day. Every day. Like when I swam for a club. Nobody will know me or be able to talk to me because my head will be underwater in this totally separate world where reality cannot touch me.
  • I’ll sail again. When I last sailed my laser, my heart freaked out and I ended up unconscious in a river. So I tried again. And the same thing happened. Three times I ended up being hauled into a rescue boat with a doctor in it (sans consciousness) before I was banned from sailing or even camping out for the rest of the regatta, and my heart broke, because the people are all so posh and rich and have designer everything and I do not fit and never have… But when in a boat I had their respect. I don’t even want that. I miss sailing. I’ll sail again and I’ll get qualified as a sailing coach and I’ll spend my summer somewhere hot teaching people to sail. (Hahaha leave the country – no. I was told I’m not well enough to do that, and NO health insurance company will insure me for more than one seriously serious thing, and I can’t afford health insurance even for one major hiccup because it costs more for me than the rest of my entire family all added together). I’ll race again. Sailing used to make me feel like I was good at something.
  • I’ll go abroad on holiday.
  • I’ll get a dog to train as a service dog, and I’ll feel safer in my own body and I’ll get my independence back and live in less fear. And it’ll help with my PTSD and also give me purpose.

And do you know what, a few years ago all that list said was

  • I want to go back to school. And I’ll get into a university, and I’ll go to uni.

That’s all I wanted (well, and to be a doctor). I wanted to go back to education and have something to show for my days instead of sitting in a hospital room tied to IVs. And at times that seemed BEYOND impossible. There were days then where that young teenager saw no hope in anything and no end to the hospital admissions and no way. But I got to school. It nearly killed me, and I got rushed away in ambulances a lot because my heart was unimpressed, and they wanted me to leave, and my attendance was AWFUL and I would go straight home after a half day and sleep and never did any homework as a result. And somehow despite all that I got to uni. And I stared getting a degree. And my hopeless dream came true. I hate myself that living my dream isn’t enough. I hate how ungrateful that makes me.

But that isn’t life. That isn’t joy. That used to be what I lived for, and throwing myself into uni work and focussing only on that masked the destruction going on in my crumbling mind. It shielded me from stuff with family and my health and what a poor excuse for a human being I was. It was all I was good at. The only thing I could do. It was my coping mechanism. And now I find myself wanting to bail on my existence even more than before because I realise that uni starts on Monday, and I will have to see the person and collective people who broke me last night with their ironic insensitive… (Not going there). I cannot face people. I cannot take any more hornets or even any ants (see yesterday’s post if curious). They are all so oblivious to every aspect of me. And I am the only one to blame, because after my past I am incapable of letting people in.


Literally. What. Was. This. Post?

My sincere apologies for it. You deserve a medal for making it this far.

Over & Done With

I’m moving back in with my parents.

I didn’t expect to be writing that at the age of 20. Right about now I expected to be sharing a flat with a friend, building a life, coping in the way that I pretended to for months hoping it would become a reality. At some point I’ll feel like a failure for writing those words, for doing this – moving back into a house I was so desperate to get away from. In essence, I am reducing myself. I am regressing, I guess. And that’s not what I wanted to do with my life now, with myself. I wanted to feel human. Whole. But you have to understand this – I am not regressing. I am desperate. I am hopeless. I am empty. I am suicidal. I am broken. I am hurting. I am hollow. I am heavy inside in a way I cannot explain – so heavy I don’t even think the world can support me any more, and half expect to wake up having fallen to the centre of a great big black hole. And there is no desperation to maintain my existence, only a quiet crying that tells me that’s not what I really want. I want the freedom it represents. And that is stupid. It’s stupid because life is a gift that I have always been so, so grateful for. And I am so, so lucky. And I know that. But it doesn’t fix things. It doesn’t make the heaviness go away. And then you have to know this – me giving in to the concerns about money that seemed to override any thought for my mental wellbeing at times I totally can’t afford to leave university, because I can’t afford to live anywhere for another year. So I have to go back. But, we figured, I don’t have to live there.

I am no longer a Londoner.

London is no longer home.

London life, this thing I adjusted to and adapted to and was honoured to call my own, is no longer mine. No more night tubes and night buses and random 2am walks by the Thames. No more spontinaety. No more freedom to go anywhere whenever I want. No more London wanderings.

And that, at some point, will break my heart a little.

(Here we go again with the warning that this is about to deal with some pretty… Difficult feelings, that might ignite equally harmful feelings in some people. If your mind has fuel for such feelings/ my words to burn, please avoid exposing it to them. Also, if you do read this, don’t worry about me. Wanting and doing are two different things and an unknown part of me seems to be fighting the involuntary and uncontrollable want).

But I am doing this for me. For the very tiny part of me left crying out that stops me ending everything and injects hesitation into the emotionally driven urge to cease my existence (yes, how confusing. I ache to cease existing and then cry because I have that feeling and want to stay alive. I don’t understand it either, but it tells me part of me is… I don’t know, clinging on to something). I am doing whatever it takes to keep that person alive. I am too numb and drained to make decisions, and so in the end my mum made it for me. One phonecall, the truth about my health voiced, and I was free from the tenancy agreement in my student accommodation.

Kent is home again.

And all I could think was no. I can’t live in Kent because the nearest hospital to my parents’ house is the one where my life was ruined. And I cannot ever go there again (as I discovered the other month). This place holds so much stagnant pain. The years of bullying. I don’t want to go out in case I bump into doctors or nurses or teachers or ex-pupils that I know. It is full of people I wanted to be free from. It is full of memories I swore I would never let haunt me. But it has the paths I used to run every night. It has the woods I cycled through and climbed trees in. Instead of paying rent, the money will go towards my train fares and food costs. I won’t have to human, I can just focus on work and nothing else, and hug my dog when I melt down. That’s the theory, I think. My dad has no idea why I’m moving back. He seems kinda… Actually he’s pretty irritating about it. He sighs and rolls his eyes and is visibly annoyed. He sais in his (many) years of living he’s never met anyone else who feels the way I feel (as if depression is something that should be glaringly obvious to an insensitive oaf who never talks about emotion. Ever). He is cynical and sceptical and scathing, and he told me to just be happier, to stop being depressed. Sure, it works like that.

I want to pick myself up. I am trying, but I am filled with such heaviness that nothing seems to be able to get me out of this rut. Canyon. It feels like a canyon, and to everybody else looking in it’s a teeny tiny rut. I am terrified that whatever it is, I will hit the bottom of it and meet my end while they stand by with no idea I even need a safety net. Because I can say a few things here, but I’m closed off in reality. People can’t read me (unless they’re my uni parents, which always terrified me and then left me super… Relieved?). But anyway. I need to shake some of the weight, and the crippling loneliness and fear of dying that are so significantly intensified by living alone (which, let’s face it, destroyed my mind in a way I didn’t think a lack of companionship could)… That’s not a weight I needed to carry any more.

I will miss watching the sun rise and set over Canary Wharf as I lay in bed. I will miss waking up before the sun and running through Mile End park (which I have only done twice, but hey). I will miss living in Mile End, and the Central, District, and Hammersmith & City lines all being kite strings that tie me to the place I call home. All my medical care is based in London and has been even since I lived in Kent (the joys of being complicated, I guess). So that won’t change. But it means we go back to hospitals not communicating and… Do you know what I don’t even care about that. Everything is slipping. Everything is sliding. I stopped checking things I’m supposed to check. I ignored my heart symptoms and hoped that the decline would just cease to occur if I didn’t acknowledge it. It hasn’t. My days are a swirl of arrhythmia and chest pain and dizziness which inevitably leads to RIDICULOUS water retention, an inability to breathe, the coughing up of a strange pink froth, and an un-fightable sleep that steals my consciousness for hours. I had forgotten how big of an impact a small ball of muscle could have. I forgot how Skippy’s tantrums could make my entire body cease to function – the dizzy headache, the inability to focus my vision and then the inability to breathe… No thanks. Ignore, ignore, ignore… Only… None of my clothes fit. Overnight, it happened. Everything was loose, and by the next afternoon I couldn’t get any of my jeans on, and they had until that point been falling down instantly. I don’t even want to know how many kilograms of water my kidneys have let stay on board to punish the heart that has annoyed them. Who even knows if I can commute? I don’t. I don’t even want to. I have three deadlines on the 13th of January (apparently) and I don’t even know what they are. Should probably care. Can’t. Just can’t. And then even if the heaviness clears, I think about the old man dying beside me and nothing matters all over again in a whole new way.

I got this beanbag for Christmas (always wanted one). And my dog is super happy because when I snuggle into it (I don’t sit on anything else in this house any more) he climbs up onto my lap and snuggles up and we fall asleep like that. He laid across me tonight (2am, to my brain, is still tonight), and I thought about coming home to him every night and I just wrapped my arms around him and… Lit up. And I think it was only when my mum saw a genuine smile that she realised all those she had been seeing for weeks were feigned (my dad just shouted at me when I tried to explain my happiness was an act. He told me I’d smiled and laughed and that isn’t an act. He doesn’t know me. And I’ve mastered the art. Clearly). Anyway, she said I hadn’t been happy like that in a long, long time. And that’s kind of sad, because I wasn’t happy, but I was the closest I’ve been to that for… ages.

Other stuff that happened yesterday:

Went shopping to a huge outlet centre with my mum. We had lunch and just spent a day together and there was no shouting or snapping not even once which was awesome because it meant I was a tolerable human being for a change.

Whilst shopping, got a phone-call from my cardiologist’s secretary saying that I have been listed for a surgical procedure on my heart, possibly a second one too depending on how the first thing goes. No discussion about the pros and cons and unpleasantness. None of that; I was listed before my consultant even signed the letter to inform me that this was definitely the route we need to take. My mum kind of looked at me and said that meant I probably don’t have any other options. Heart surgery was one thing I wanted for new year. I’m grinding to a halt again, getting breathless and I am so, so tired of the chest pain because it seeps everywhere, spreads. And I mean… It can’t signal good things, can it? So it just almost constantly reminds me that Skippy is an idiot, and I don’t want to think about that right now, because I was busy concentrating on the other hiccup that keeps very nearly succeeding in its mission to kill me.

Got home to scan results. No inflammation, so Cedric (small tumour) is a solid thing. And given the history and the presentation and stuff, the surgeon wants Cedric OUT, along with the “underlying cartilage” he’s grown from/ attached himself to. In fact, no other options were given or discussed. I was more sort of… Told. Twice in one day. That I’m going to have a general anaesthetic. And it didn’t phase me. Because that’s just normal life. That happens. I’m used to it, cool as a cucumber about it, and it is pretty much as much of a big deal to me as my dog eating his dinner – it has to happen for life to be y’know, possible and present, but it isn’t a huge great thing. In fact, surgery is good news, because it is a route back to normality, or a method of never having to face that reality again if it goes horribly wrong. Either way, it means an end. In theory. And that’s all I want. A break. From everything. Just to… Breathe, again. Because I have been drowning for so, so long. (Surgery also means that there’s something people think they can do to help, which means HOPE, when I am capable of finding such a thing again).

So yeah, these are my 1am thoughts (even though it’s now 2am. Good one brain). I’m laid in bed with a great big bear of a Labrador sleeping on my legs, and the weight of him there is saving me from the weight within myself, sort of. And I am writing. Things that I am not posting here. My sadness has something to say. Also I’ve sort of accidentally written 9,000 words of a (not a novel because hello this is just me writing, but some sort of crappy story, but not a story because that word makes it sound silly to my brain, but yeah) thing, and I have no idea where it’s going, and it’s probably awful, and it’s not related to any situations or reality at all, but it seems to be my… Backup plan? Maybe I am trying to write my way out of this canyon. Then again, this blog does say Trying To Get A Life – writing my way out of a rut. So… That’s kinda what I normally do. Until now. Until it isn’t working. Until forget the heart and kidneys and physical health hiccups in general and my mind is the thing that poses the greatest threat to my life. I think. I don’t know. That’s my fear.

I’m me, but something else is at the wheel, and it wants to bail on this whole “life” thing. It’s so strong that I don’t know how long I can continue to overpower it. One of us is going to run out of the energy to fight soon, and I’m terrified that… It’ll be me.

But it won’t. My furry rock has… Secured me to the planet.

The Things I Tried Not To Think

Warning: This was not a typically merry Christmas, nor was it a Happy New Year, it was an entire machine gun full of trigger warnings, and it is the reason I haven’t posted for over a week. I fell apart. What you are about to read is what I wrote in the notes section of my phone on the occasions that I was with it enough to form words. It doesn’t show the hours I spent uncontrollably crying, or the hurt so bad I could almost feel it, or how close I came to something that starts with s and ends in a funeral, and tears that aren’t mine. It doesn’t talk about the real issues. It’s superficial. It’s the overflow. But for now, it’s all I can offer you. This is me.


“I came as close as I will ever come to asking for help

I said: I don’t know what to do with my life

She said: Just go wherever it takes you.

I said: I feel very lost and very unhappy.

She said: Obviously.”

That was it.


“They will let me go.”


“Do me a favour and tell them this… Tell them thank you. For everything, but mostly for enduring me. Tell them sorry that they had to meet me, to be burdened by me and probably by my health too. Tell them I’m sorry for ever existing. And thank them for putting up with all of that… (and I have never meant anything more).”

“[My emotion] switched back on and all I could do was feel. All I could feel was hurt. And all I could do was cry and buckle and deflate and write suicide notes and not find the right words or a sure enough way and then cry again and crumple more and race backwards through all the things I run from and just long for [the end]. All I wanted for Christmas this year was to [cease existing]. I died in so many ways, but not in a way anybody could see, not in a way that concerned anybody else.”

This was the day we had Christmas with my grandparents.


“Do you have any idea what your PRESENCE is doing?

Do you have any idea what having you here is doing?

My mood in the last week has done this (mimes falling off a cliff) because of you

Having you around makes our family… Difficult

You can’t stay here. That is not an option.”

She says all this to me, because I tried so hard not to cry in front of her, and told her I didn’t want to talk about why because she’s just shout. So she followed the suicidal heap of me upstairs, and shouted. Because we’d been to my grandparents and I sat and cried at the dinner table and she said it made an atmosphere. So I phoned my grandparents crying too hard to get words out properly, and I apologised for existing. And that’s what I do. When my mind is serious about going, I cut ties. I cut the emotional ties that bind me to the commitment of my existence. Slowly, systematically, it began with my confused grandparents.

“Talking didn’t help, but I cried so much that afterwards I couldn’t shed another single tear”


“University is the right thing for me but I honestly don’t know if this is the right time to be doing it.

I told her I thought she was going to let me go. She just stood there and hugged me for a very long time and asked how. I said I thought she was just going to leave me to kill myself. I thought she was going to leave me to go. She said sometimes just talking helps. It helps her. The words I said were interrupted and argued back against and I was told that my brain is wrong. That made me feel worse but it made her feel better. In her mind she was helping. In his mind I’m to blame (the whole next paragraph does not belong here. It’s too private. So… Imagine its contents before I continue). He said he was just reacting to me… So basically, kill me now. Kill every last cell of my being, please.”

This was the day we drove for three hours to my sister’s house and three hours back to spend Christmas with her and her family, and there were a lot of extra notes that I won’t write here.


“Run away from London and curl up in the countryside.”

“I am terrified to let myself get close to people. I panic, I freak, and yet all I want is to be close to someone, anyone. And I don’t know how to. Not my parents. Not [our extended family].

I started systematically apologising. I wanted to apologise for existing, but I couldn’t do that. I started with my grandparents. When I’m suicidal, like seriously having to make an effort not to end it all – I cut ties holding me to existence, the final strings.

I’m broken. I have caused so, so much hurt. And I never meant to, but they are right. The pain that pours out, it’s all my fault.

So I will apologise to them all. One by one.

[…] And I decided there I wanted to die again. Not again, because I never undecided, I just wanted it more again. Only I don’t. I do that to run from the hurt. I don’t want to be dead my mind just doesn’t want to hurt any more and so it runs to the only coping mechanism left that it can try – the only way it can think to never have to hurt again at all.”


“I am increasingly becoming obsessed with cleanliness and disinfecting

As I lose control over myself, I grab it everywhere I can

I have reason to fear germs. I’m prone to infection, and in a recent hospital admission they found I was leukopenic. But I’m more terrified of dying. So I melt down about the thought of getting an infection that won’t affect any of my family but will run riot in me.

Need to leave uni. Can’t cope. Asked that question directly ad realised the honest answer is no.

Dreading going back to London. Dreading it. Like, I collapse into this heavy pit of crushing dread. I feel heavy, numb, so heavy I’m drowning in life and time just wades into the mire I am flailing in and drags my drowning mind forward through the things that are killing it.

All day my heart had a party. It hurt. The head rushes were more intense and more regular than normal. I felt lousy. And this isn’t about that. Yes, some of this is caused by my physical health, but I am a normal person behind that and I have normal things going on.

I don’t know what to do with my life.

My dog thinks my bed is now his bed.”

“I am impossible to love, and almost as difficult to care about. I know. When people say they care I FREAK out and push them away. I know. I don’t talk about stuff.”

“I’d like to apologise. Just that. An apology. To everyone who knows me, because I’m sorry you have to go through that.”


“I don’t want to go back to uni. I don’t know how to go back to being alone. I don’t know how to go back to trying to be social and feeling lost and overlooked in one of the most densely populated parts of the country. I don’t know how to go back to the pressure that will eventually give rise to stress, and the lack of support. I don’t know how to go back to being without a dog, without something warm and alive to cling to in the aftermath of a flashback or a nightmare, without a safety net to wake me up before my body even lets me know it’s trying to die again. I don’t know how to go to a cold, modern, EMPTY studio where 14 square metres fits my kitchen, study area, bedroom and bathroom all into one space. I don’t want to be penned in. I’m not an animal built for a city zoo.”

(another piece too private and personal to belong here) “And it’s as if all the things we had to work to (…) It’s as if that never happened. This perfect being stands in place of all of that and it tells me “this is all on you” and they both omit, forget, overlook. They tell me it’s normal (…) And in that moment I know I will never forgive either of them. I feel betrayed. Mostly by myself.”

That was when my 17 year old nephew, who has a nut allergy, ate a sandwich with pesto in it. He didn’t go into anaphylaxis, but he had a shot and a cannula and that’s a HUGE deal to healthy people. And a huge deal of it they made, with outpourings of sympathy over social media and everywhere. And I was worried about him obviously, and it sucked, but it showed me that people care so much more about him, because nobody gives a crap about when I am in intensive care fighting for my life.

“And it’s at times like this that I want people to go to hospital with me, to see what I go through, to gain perspective on a line hurting by seeing a central line stitched into the most sensitive areas humanity could think to develop major veins. (…) I am shouted at because not everybody has been through things like me and if I hadn’t been through all of that then it would be a big deal to me too. It never was.”

“I don’t even want to start uni work. I just want to [not exist].”


“I give up and I want to end it all, but after weeks I sent my friends messages to tell them what they mean to me, and their responses were adorable. I had no idea I meant so much to them, no idea what I’d done to their lives. And without knowing what I was thinking, Uni Pal told me that could I please not leave uni because I am her reason for carrying on, and the reason for (something else). And I remembered this life I have there that isn’t bad. And I want those people around me. I want to be enough for them. I will go back for them? I don’t want to go back, my brain hasn’t un-decided that it’s quitting. What I really want is to write a book. And then another and another and another. And get a puppy to train as a service dog. And a place to live, maybe rent a place here (where my parents live, where I grew up, the money I pay in rent for my 14 square metre room will get me a 3-4 bedrom house on a train 28-70 minutes from London.

What do I want for the next 364 days?

(a big long list including heart surgery etc. that ended like this)

  • I want to feel like it’s ok that I exist.
  • I want to feel wanted
  • I want to matter
  • I want to not hear the hurt and pain in the voices of people I’m meant to care about or whose lives my simple presence destroys. I want to die. I want to set them free
  • I want to feel like I fit
  • I want to be less lonely and alone
  • I want to leave university
  • And die
  • I want to die
  • But I don’t
  • I want to run
  • I want to go to Barcelona with my friends
  • I want to swim
  • I want to be the person they deserve or die trying to protect them from myself

I am poison

I want to not be poison any more. I want to apologise to every single person I’ve ever met and apologise fro my existence, for bothering and burdening them, for the fat that they had to meet me. I want to run back through time and build walls around myself to keep out the people I let in. I want to run back to all the times I survived when I shouldn’t and trip up the doctors that saved my life in the brink of time so that they don’t save it. I want to go back to [the main event in hospital that gave me PTSD] and tell the dying dregs of myself (because that’s where I really died, back then) I want to tell that girl to bite down on the scar over her radial artery. (Very graphic description of what would happen if and how that girl could do that). … Ans when she stops drinking and passes out she won’t bleed much more and it will be too late and she’ll be free from it all. I want to give somebody else all the extra time on the planet that screwed up girl has been given. My family hate me, but not me. They hate what I do to them and say they love me but they tell themselves that because they can’t not care. I am poison. I am a thorn. I am faeces, pure excrement. I do not belong. Two lines on this family tree will never join to me. The damage is done.”

And then I wrote out this

“[My name]

9/3/1996 – 7/8/2012


I just want to be I.P”

Because I died when that man… I died back then.

“My heart doesn’t want to leave uni – it has already left, and now my head realises that ni is not good for it, for me, right now. But my head is afraid that when this crisis clears, it will regret leaving. I can’t even think about starting uni work, I just meltdown at the thought.”

“They said we’d discuss options, discuss plans, but all of that is forgotten. It was just lip service – they stepped in and to them offering empty words was enough, they had done enough, the situation was saved. Only… It wasn’t. It opened a void, it tore my heart to shreds. There was relief, briefly, until I discovered that this was the end of their support, there would be no discussion, and I had to pretend things were better because they seem to think things are. And then it was assumed that I’m going back to uni, like I could suddenly miraculously cope.

They don’t know how to not un-help

I don’t want to go back. I don’t want to look a these people and they don’t understand that-

These people half care. They care as much as they know they should, it doesn’t run deep. The hurt runs deep, and they tell themselves to care. They’ll get over my death fairly quickly.”

This was a very twisted part of my brain speaking. I know it makes me out to be the sort of scum that should be at best assassinated and at least wiped off the face of the earth. So whatever you thought of me, I’m sorry. It isn’t my physical health that poses the biggest threat to my life at the moment, and with the state of my heart/kidneys, I fear that’s going to put me in hospital too.

There are more jottings. For another time. For now, I have to decide whether or not to give up the contract to my flat and move back with my parents. I have a couple of hours to make that decision, and have to be moved out by Monday. Guess that’s that then.

Feeling is so, so much more dangerous than not.

Really do not know why I shared this. My brain doesn’t care about anything at all at the moment, so I’m not yet drowning in regret over putting this lot out here but… I will, I think.

Something From Nothing

In some sort of superhuman feat, I woke up 12 minutes before my lecture this morning and six minutes later was leaving my room in a half-asleep sort of zombie state to go and listen to an hour of physiology. In my defence, we usually have those lectures on Tuesdays, and I had been up until 4am on the phone to my friend (more like BROTHER because we were so close) from sixth form. We hadn’t messaged for over a year, and he dropped me like a hot potato in our last year of sixth form when he got a girlfriend, but he’s broken up with her and he was in a bad place… And I just wanted to go back to old times.

I forgot how well he knew me. At uni I have to explain the past to people before they understand the way I am now, but he lived through the past with me, he knows me so well that it was spooky but SO NICE for someone to just see through everything and just know how I work and… Who I am (nobody here really knows, I put a guard up that I cannot take down, and I’m always away from them). We started off talking about how he was, then how I was, then we had a big long catch up and then we just ended up hysterically laughing for hours. We reached a level of immaturity that we both admitted we hadn’t been reduced to since we last spoke (and could not display around any other human), and it was amazing to be able to talk like that right away after so long not speaking at all. It was the familiarity my brain has been craving, it was like going back to sixth form, and we laughed and talked about all the funny stuff and how we used to drive our biology teachers mad by just laughing all the way through lessons. He wants to meet up over the Christmas break, and damn it I’ve missed his hugs. We are SO close that he was basically my brother. He always used to say he loved me like a sister, and his family are so nice even when we’d play darts and mine would bounce off the wall and nearly impale us all.

After lectures I did something I’ve been meaning to do for ages. I filled out an extenuating circumstances form to officially declare all the work I’ve missed. It was such a faff, but it’s not even that I’d been consciously putting it off, I just hadn’t been able to find any importance in anything enough to take action. I was kind of anxious that in putting it all in writing I was giving the university bullets to end my uni life with. But I missed a tutorial and still produced the essay that was set in it so… I feel like I’ve done myself a favour there. SC Uni Friend sat with me, and we had a fight with one of the many huge printing machines to make it photocopy the medical evidence I had to provide, but after an hour long battle with the entire process, I went and handed in the stupid thing.

And then I’m not really sure what happened. I went back to my flat and planned to wait until it got dark in the afternoon and go and see Kew Gardens at Christmas or something. I decided that I am going to go to the Hunterian Museum tomorrow (it’s a museum at the Royal College of Surgeons that is just FULL of preserved anatomy specimens and surgical equipment, including some pretty AWESOME and significant stuff) because going to the Natural History Museum yesterday made me realise that I was mostly specifically there to see the preserved brain and spinal cord, and I feel that now I’m all adult and anatomy obsessed, I should seek out a place that my brain will find as awesome and mind blowing as it used to find the Natural History Museum’s basic human biology exhibit.

One minute I was sat on my bed trying to plan these things… And then all of a sudden I was waking up feeling drugged and slow… and it was 7pm. So… That went to plan (not).

I’m trying to get out and do something every day because I’m mostly just trying to switch my brain back on and taking myself to places that I’m hoping will ignite some sort of ANYTHING. I don’t want to shut myself off and just stew in the stagnant state I seem to be stuck in. I’m just trying to figure out how to fully function again, because at the minute there is no importance in anything.

I realised last night when on my super long phone call, that this Tuesday was the first time I’ve ever missed a lecture just because I couldn’t find motivation or importance or… A care in the world. Usually the only occasion on which I will miss a lecture is if I physically can’t get out of bed. Although it’s basically a rite of passage for any student, it should probably be a huge deal. It means things in my mind are probably worse than I thought, because my reason for living and getting out of bed in the morning… No longer gets me out of bed. Honestly, for the last year and a bit, university has motivated me and been my reason for doing anything really. Not only can I now not feel any interest in what used to be at times the only and most important thing my life, but nothing matters. At all. And I should probably have some sort of feeling about that, but I don’t.

A lot of people I know are broken at the moment in the same way that I used to be. They are struggling to cope, but they can function. They are still stressing about things and worrying about uni work which means that they can still find importance in at least something. Buckling under so much stress and being unable to cope is where I was for a few weeks, and it sucked and I hated it and I couldn’t cope… But I could feel. Looking back now, I realise that not all hope was lost, because the fact that I was stressing about things (like uni… And then after a while not uni but just… Not dying) meant that I still attached some importance to them.

And I mean… I’d like to find that again.

I have an assignment due in tomorrow (I mean to be fair I missed the lab but I still have to do the lab report at some point) and one due in on Friday, and then another one next Wednesday along with a test or two that are happening online next week… I have NO notes (I mean, I have some typed notes, but I haven’t made them full sentences and stuff or handwritten them and they are only for about 5 weeks… out of 11…) and also… I haven’t started working or revising for ANY OF IT. And I literally have no feeling about it. It just… Isn’t even a thing to my brain. As coping mechanisms go, this one isn’t so great. It’s keeping me alive and on the planet and most of the time not overwhelmed (unless social interaction has to occur) but… It’s going to wreck my life.

I feel like there is a heaviness in my mind now instead of a void (numbness to me feels heavy and deadened, the void was just light and airy and there was NOTHING in there at all. I can think now, just. I can talk. I can respond. Not fully function, but respond, so the void is gone), which means there is some sort of feeling or thought there, and there’s now enough of that for me to be able to act normal. Words are just sounds, easy to make and harder to mean. I’ve re-learned how to plaster on a tone, and how to make it sound like I’m talking about something when I’m talking about nothing. It’s giving off an illusion that the few people I can deal with being around at the minute seem to have fallen for well. It isn’t healthy, it really is the wrong thing to do, and it means I won’t get the support I need, but it’s literally that or I can’t talk at all and my brain is just all ASDFGHJKL.

I am trying very hard not to do… Nothing.

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Today’s Christmas jumper (yes I’m sat in bed fully clothed in this picture, don’t judge, my windows don’t shut so my room is FREEZING) People are amused at the amount of Christmas jumpers I own. Is there any other kind of jumper to wear this time of year?