Dear Universe, I Submit

OK, I give in. You play dirty. You change the rules. You’re like an orca playing with a seal before you eat it… except you never make the kill. Your favourite time to kick is when I’m down. When things go right you shout JUST KIDDING! You feed on my hope until there’s not enough left of it to sustain me, and then you fill my world with people who tell me to think positively as if that will change your course. Normally, I can put up with your rubbish. But sometimes, when I’m really broken, I cry. And then, because I hate myself for crying and the shame is too heavy to bear, I curl up in a ball on the floor and deprive myself of the comfort of a chair because it feels like the floor is where I belong. And that’s how I know I’m really broken.

My mum brought me back to university. We were almost into my accommodation when we passed the front of the campus restaurants with big benches and tables outside. It was extraordinarily busy, and due to the anxiety I have about going ANYWHERE WITH MULTIPLE HUMANS IN IT while in a wheelchair, I was already pretty uncomfortable (being way below eye level and not in control of where you’re going is something I have yet to get used to in a large group). And then I was falling. More accurately, I was being catapulted out of the wheelchair – the old wheelchair that has had several users before me and now can’t turn left – the new wheelchair I was using has had to go back to its former user. Before I really knew what was happening, my mum was saying sorry and my knees were smashing into the ground. I just wanted to get out of sight and out of the way. A girl I’d never met brushed the dirt off one of my knees as tears welled in my eyes, and my mum tried to laugh it off at one point but felt very bad. And yeah, I’d been on top of things at uni. I’d switched off all emotion to get myself through. I was drowning but not yet drowned. Now I hurt in places that didn’t hurt an hour and a half ago. I’m on the floor. I’m all cried out (it took me about an hour to actually allow the tears to fall). Honestly, I’d been so… On it.

Would you be open to a truce? A ceasefire? I promise not to join twitter just so I can internationally mock you in a series of tweets. You already have pretty much every element of my health and I’m not sure what else you’ve left me that I could possibly give to you. But you’re welcome to whatever you can think of. 

I submit.

I don’t want to use the wheelchair. The frustrating thing is that my legs are fine, and they want to walk, and I want to walk on them and run on them… And Skippy says no. And we’re in a stalemate. And I am losing faith in medicine. I think I am losing faith in myself. I have had no idea how to carry on, no idea how to get through the destruction in my mind. But I know I’ll get through. With no idea how, and no real awareness that I’m even making process. One day I’ll just wake up and the world won’t feel heavy. And the awfulness will be behind me somehow. Because time drags you through. So it’s ok that I don’t know how to be. I don’t have to. (Trigger warning). I have fallen apart and the crumbled pieces have just been trodden on, but all those fragments are drifting together, being pulled to the other side of this by the passing of time. There’ll be an end. Even if it’s death. Even if that death is at my own hands, as it so nearly has been in recent weeks (don’t panic, I’m not going to do that, for starters that would involve getting up off of the floor). Something won’t let go. Something won’t give in. Physically I’m not struggling. The physical side of these health things is not what gets me. It’s the mental side. And emotions are not a conscious choice so anybody about to tell me to be positive… please don’t. If there was no positivity, there’d be no human left to write this.

My life at the moment is a situation I can’t control. None of it. And on top of everything else uni deadlines are arriving like rapid machine gun fire so I feel I should leave my friends to their work. I feel like I’m staring in the face of defeat, and I accept that. I accept the outcome and that I can’t change it and that this is what it is, but some stupid little part of my deluded hope is still fighting for its life… and it’s going to kill us both.

“Sugar we’re going down swinging” – Fall Out Boy, Goin Down



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?

It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

One Thing Too Many

Something is very wrong and I don’t know how to make it right. I don’t know how to BE right, is more accurate. My brain seems to be done. Completely overwhelmed. I’ve no idea why. Maybe it’s because I was so happy with my 3am discovery (see previous post) that I gave up on sleep. Maybe it’s because the new drug I am on is PURE EVIL IN IV FORM and has made me feel like death BUT ISN’T DOING WHAT WE NEED IT TO. Maybe it’s because a doctor walked in this morning and told me that tomorrow (instead of today as I had been told) one of his colleagues is going to slice me open as casually as if we were discussing the fact that this hospital room has no windows, and nobody has appeared to explain what is going to happen in any way shape or form (I have to have a plan. It’s my body, my life, and right now I feel like I’m the only one left in the dark. Not being in control at all scares me). Maybe it’s because I was already completely overwhelmed. Maybe it’s because I got worse overnight. 

(Note: the standard of this post is shockingly awful. I am trying to put words to things that don’t even make sense to me and that make me so ashamed of myself as a human that I have no intention of reading through it after it has been written. I’m irritatingly weak and pathetically beaten, and you’ll have to excuse that. But I want to be real. As a society we often romanticise illness with fictional stories that tug at heart strings, but it also has an ugly side which unfortunately I am about to mention a lot)

My brain is no longer thinking, it’s reacting. I’ve hit this wall, this huge great mental barrier, and rather than climbing it or scaling it I’ve curled up in a crying little heap at the bottom. I’m too exhausted to fight with my own mind any more, and so today it called the shots. I seem to be refusing all IV things that I am not currently hooked up to (there are three on this drip stand, and four other things prescribed which I just cannot handle being given). I’m not doing it to be awkward, and not even because I think it’s something I should do, it just happens because for some reason when someone walks in the room with the next IV I now completely freak out and tears well and I just cannot. It’s one thing too many. I’m so overwhelmed that every single new thing is just too much today. My brain reacts to being so overwhelmed by… curling up in a ball and deciding it’d rather just feel like death. Or face death. No more waiting. It’s cruel to drag it all out. I don’t know how to do this any more. 

A (lovely) dietician came to see me this afternoon because being intubated has messed my throat up to the point that I still can’t swallow anything without choking. She wanted to put me on a puréed diet and told me I needed to stop and appreciate that I’ve been doing all the right things and my throat is at fault, not me. My friend sat there while we had this chat and I just watched reality cloud this happy mental place I’d been lost in. I’d been in this little bubble – I had a video from the stranger who happens to have a brain capable of making music that saved my mind (apparently the video was his idea), I had the company of my friend from the Bastille gig all the way from Manchester… so the awfulness had been so far away. And then just like that it had me. With a new pacemaker and a puréed diet I suddenly felt like an 80 year old. I remembered where I was. I stopped feeling like a normal 21 year old human. I remembered how I felt emotionally. I remembered the entire situation and it hit me like a train. So did the fear, and what I can only describe as a desperate helplessness (nothing we do is working, we’ve thrown some nasty drugs at the situation and it’s still deteriorating). My voice cracked, the tears welled. My nurse just said “Bastille! Play the video!” So I played the dietician both videos I have and I don’t think she was interested (although she had heard of Bastille) but it helped because I couldn’t cry for a few minutes after that. I was furious at myself for being such a pathetic idiot. When she left, the tears fell. 

Soon afterwards, a doctor walked into the room to take bloods (to check the nasty new medication wasn’t causing kidney failure or messing up my liver or making my muscles break down and poison my blood – as it is known to do as some of its “less common” side effects). I looked up, and off my brain ran. Tears immediately gathered again, my voice broke. I didn’t have the energy to say no, or the confidence. I rolled up my sleeve, both of us knowing that getting blood from me is a near impossible challenge that usually requires an ultrasound machine and an anaesthetist… She put her tray of equipment down on the bed… I saw all the blood bottles and needles ready to go (she’d brought a few because she knew she’d have to have many attempts – the vein my PICC line is in is so small they can’t take blood) … and I was just completely overwhelmed. My mind crumbled. I just stared at my arm and sank inside. The doctor said she didn’t have to do it then, and asked if I wanted to wait. In reply this tiny voice that sounded kind of like mine said,

“Can you come back later please? I’m really sorry, I just can’t. I don’t know why. I’m so sorry.” She was totally calm and very understanding about it. I’m so hard to bleed that my “daily” bloods are taken like… once a week. So it doesn’t even happen often. I’d thought I could do it. I had tried to swallow how overwhelmed I am right now and offered her my arm but I just couldn’t. After that I was embarassed. I was ashamed. I felt pathetic and ungrateful. I apologised profusely, and then withdrew to somewhere in my brain that made my eyes brim with tears as I lay on the bed (by that point I was too unwell to leave it). 

I have no idea why, but every single thing is just too much right now. Every time a member of staff even walks into the room I find myself holding in tears and my voice breaks as I try to speak. I haven’t seen my consultant since Sunday. I have no clear plan, just – sit, wait, slice tomorrow (Thursday), sit, wait, hope. And I have nothing left to give to my thoughts or feelings. Maybe I’ve cried it all out. 

Staff keep telling me that this is understandable, that I’m doing better than a lot of others would in the same circumstances and that I’m coping so well. They tell me I can’t see that because I’m.. me. When I apologise for crying at them and argue that I don’t need to be here (knowing how many people had cardiac arrests on this ward today alone), they tell me I don’t appreciate how serious the situation is, because I’ve gone from feeling so extremely unwell with my heart before the surgery that this still seems like nothing to me… But it isn’t ok or justifiable, is it? It’s ungrateful and ridiculous and really really not a good idea (brain, please take note). I just have no idea how to deal with this, no idea. I ask for help and just get told that given the situation my reaction is normal and human and ok. 

But how can it be ok when my brain is here like, “Right ok so I don’t know how to deal with this any more so let’s go into denial and refuse to switch IVs every few hours so it doesn’t feel like we’re in a hospital… And then let’s decide whether we’re going to just run away into the night or ask for a self discharge form…”(???)

How can it be ok if when the nurses explain that y’know… the grim reaper may gain a new customer if I did that, my brain is all “BUT WHAT IS THE POINT?! NONE OF THIS IS WORKING! It isn’t working and I’m terrified of everything getting worse and killing me so naturally let’s just wander down that route with open arms because hey at least then we aren’t out of control and in a crisis, just in a crisis.”(???)

Honestly, nothing is improving my physical health situation and now it actually seems to be deteriorating. I’m so scared it won’t stop in time to prevent the worst case scenario. I’m also scared by the fact that my brain can no longer face… anything remotely to do with hospitals… whilst I am an inpatient… in a hospital… relying upon some IV pumps 24/7 to keep me alive (luckily the most important things were connected BEFORE my brain shut down and so I’m still getting them 24/7).

Not even sure why I shared this, but hey. 

Where I’m At

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No way but through.

Burned Out

The fog that descended on London in the early hours of yesterday had this morning been present for over 24 hours with no reprieve, which is… Odd, even for British weather.

Processed with MOLDIV
Because this is exactly what you want to wake up to on halloween… (It was even creepier walking past a graveyard on my way to lectures and not being able to see if I was alone or not)

I put on this pair of socks as I got dressed today and…

Processed with MOLDIV

Immediately had a flashback. It messed me up, and I had no idea what the trigger had been. Why was I suddenly in an intensive care unit in my mind? (I was unwell enough to be in one, but I feel that is a different post, or at least a later part of this one). Why was there such fresh terror? I looked back down at my feet and remembered (believe me, remembering and re-living are two vastly different experiences). The last time I wore those socks I was in an intensive care unit. It was shortly before my birthday. The birthday I didn’t think my health was going to let me see. I almost died and went through so much unpleasantness, and I did it all in tartan socks (every time I think back to that time all I remember is that I did it all in tartan socks). Every time I was moved or changed or washed or whatever, those socks were pulled up or put back on over/under the non-slip hospital socks I wore. And it was kind of gross because I was in critical care for six days so those socks could probably walk by themselves, but it was nice to have a piece of me among all the hospital attire.

The thing is, I’m weird. Once I’ve almost died in an item of clothing, I usually never wear it again. I even change the bracelets I wear (apart from my freshers wristband and the piece of string I tied around my left wrist months ago – both have to be cut in order to be removed, and I was jokingly told that they were lucky and don’t want to get rid of them just in case). After I’ve met the grim reaper whilst wearing something, it is marked forever with a memory I don’t want to trigger, and so it is never put on me again unless I need something to wear when I’m in hospital. I don’t know how these socks made it back to my sock drawer. I think perhaps its because they are tied to several acts of triumph:

  • I was held up by a nurse who took my bodyweight as my legs attempted to do so for the first time… In those socks.
  • I figured out how to walk again in those socks.
  • I was terrified, and I was so done, and I wanted to end it all in that intensive care unit because I couldn’t face it any more, but I got over myself… In those socks.
  • I left critical care the night before my birthday and went straight to a concert in those socks.
  • I turned 20 in those socks, and I hadn’t thought I’d ever see the day.

This is one of those weird examples of how health issues can effect everything. Simple things like a pair of socks become a huge deal (although I’m not sure many other people get as weird about this sort of stuff as I now do). I kept the socks on – liking the fact that they represented moments I never wanted to remember, and moments I never wanted to forget.

I was still in need of a fog light. Not for the actual fog, but for the great fog of my current emotional state that has descended upon my brain, and the fog of acidosis that was growing thicker and thicker (and had, like the actual fog, been ever present since yesterday. I nearly ended up unconscious in the library, where I found myself living from 2-11pm, and had no work to show for it at all. It was eventful. I broke down even more which I didn’t think was possible, due to the insensitivity and misunderstanding of some fellow human beings). I still needed a fog light. So I wandered off to the meeting I’d arranged the week before with my (ex-)uni parent (all is about to become clear).

I dragged myself out of bed an hour earlier than I needed to and went in search of a fog light. Except someone had taken out the bulb and it wouldn’t show me the way any more. It was like that moment when you flick a light switch, expecting the bulb to do what it always has done for you, and the filament is burned out, so you look up at it, and you try the switch again and again, and then you’re left in the dark. And the fog. And it sucks.

Less than five minutes after encountering my non-functional fog light, another person turned up. An appointment had been made to meet me at 9am, but finally this uni parent seems to have seen sense and backed the hell out of the mess of my life. Which is great. But I’d kind of really needed someone to just poke the hornets nest of my thoughts until I let them all out and they stopped stinging me to death. I don’t talk, and this person knows how to make me talk, and how to make me do the right thing. I needed a rational argument. All I got was a few awkward silences while emails were read through, a “how’s second year?” “yep that sounds about right” “Well done on first year by the way, what was your final percentage?” “I think you’ll get another 2:1 this year” (erm. I sat 4 exams in acidosis all having NO NOTES on 5 out of 8 modules and less than half the lecture notes for the other 3, and actually managed to pass. So if I can somehow fend off the health stuff, I’m getting a damn first this time. If I stay. Do I stay?). And then “yep well I only literally wanted to just catch up that’s all…” *Looks at the door* “Bye.”

This defective fog light wasn’t just not showing the way, it was sparking, burning me. I feel like the purpose of the meeting was just to show me where I stand, to show that things are different now and I am uni-parent-less. I was grateful for that. I like to know where I stand.

“I’m dying to tell you that I’m dying here.” – Frightened Rabbit, Nitrous Gas

I wanted to turn around and say I wasn’t ok, ask for some advice. I wanted to cry out for help. But we didn’t go anywhere near the real conversation topics this time. And I won;t go there again.

“You don’t forget the face of the person who was your last hope” – Suzanne Collins, The Hunger Games

That’s what people do: they drop me, or they change. Right when I really, really need them not to.

I walked back out into campus (after getting locked out of a building and then inside it due to some malfunctioning doors). I sat in silence, alone with my thoughts in the cold and the fog. I sat acidotic with my heart beginning to become outraged. The fog of my health situation settled around me. There were no thoughts, just a heaviness, a feeling that I was lost. And when I looked up I had no idea what way I was facing because a particularly thick patch of actual fog had settled around me. There were probably people there, but I couldn’t see them. I heard a phone ring. But I felt alone in the middle of the world. Health issues make me feel exactly the same.

I sat through my first two lectures writing a new novel. I put on this act, this false illusion that I can face smalltalk and people, when inside I’ve no idea what I’m really saying. I make the right sounds and I laugh when everyone else does, and I smile, and that is enough to shield my true state from those around me.

Between lectures I sat with my friends in a restaurant/canteen/cafe on campus, and forced myself to try and engage in normal conversation. When we stepped back out into the world, the fog had almost completely cleared. Normality was visible again, the buildings that had always been there now actually appeared to be present and real again. I almost laughed at the pathetic fallacy.

Processed with MOLDIV
The photos on the left are the views from my accommodation at 8am this morning as I left, which is how London looked until about half an hour before the photos on the right were taken at 3pm when I got home.

Health issues don’t do that though. The fog arrives quickly and it doesn’t leave by itself. The rapid, heavy breathing, headache, nausea, lack of energy, and irritated heart told me that acidosis had a hold on me towards the end of our third lecture of the day. I fell asleep during it, which also rang alarm bells for me. I don’t need a fog light to find the way out of it – I need a hospital. And yet… I just can’t overcome the mental block stopping me going. So I’ve been sticking IVs in myself. And all I’ve wanted for the past few hours is to go for a run. I know I will end up unconscious at least once during the event (I do every time, and all I do is jog for a minute or under and then walk for ages before repeating). But I don’t care. I want to run until the world fades to black and then get up off the floor with my lungs crackling with the fluid that fills them, and my chest hurting and my body screaming, and run on until it happens again. It will hurt because there’s a raging infection in one foot, and a healing fracture and muscle tear in the other foot and calf muscle respectively… But pain makes every act in the face of it an act of defiance. I want to feel defiant. I want to get back at my body and ruin it like it is ruining my life. I want to show it that I won’t be stopped by it, I won’t roll over in defeat. I want to feel that defiance. I want to feel in control of my body just for half an hour. I want to feel anything. I want to feel alive. Because right now I feel pretty useless and lost out of control and dead inside. I probably won’t get very far because I can hardly walk, but I cannot face the fog I’m lost in. I feel the only way out of it is to run wildly in any direction. Until I can’t take a single step.

I miss living in denial.

I miss living in the clouds.

I miss being in control of my body.

I am incredibly grateful and I know I’m so lucky. I miss being in a situation where I could take it for granted. I miss not having to think about how close I am to losing things I don’t know how to maintain. I miss having room in my brain to think about normal things like university, and not having to worry about the fact that there is a medical emergency of some type or another going on inside of my body, that could kill me within hours, and having this intense fear in my mind that chokes all rationality out of me.

No way but through though. No way but through.


They’re Half Way There

In the media there seems to be this totally romanticised view of illness – it brings people together, people are so brave and strong, it turns their lives around for the better… But what about those of us who aren’t like that? What about those of us who are brought to our knees by our own bodies (even if we are only temporarily beaten)? I may be alone here, but I guess this post is for those of us who are like that, and for those who have no idea what that feels like. (Excuse my patheticness. Excuse my weakness. And please don’t judge me because I’m sorry for this. But there’s a side to chronic illness that people don’t see. And although this entire blog seems to somehow or another expose that point of view, I kind of need to let it all out today. Because all I let out today were tears that caught me by surprise. And I don’t cry).

Nobody seems to appreciate the level of “too much” I am referring to when I say that everything is too much. I’ve sat all day listening to my friends melting down over university stresses. They talked about how they’d stayed up until the early hours of the morning crying for hours, how they’ve considered dropping out. But they’d carried on and somehow got through and dismissed my issues saying they’d been there too (or felt the same), as if it was nothing. They talked about us as if we were the same.

They are well enough to put hours and hours into their work, and they do. They spend hours in the library. They work and work to compensate for the irrational panic that they are miles behind. Like everyone else they are overwhelmed by the sudden increase in intensity and workload. They feel utterly stupid at times when they can’t do the coursework, but they figure it out somehow. But they are on a level pegging with everyone else. I feel inadequate and stupid and like a complete idiot in comparison to them, and they just keep telling me that I’m super smart. And although they are buckling under the pressure, they are in the same situation as everyone else. They have the time and the energy and the lack of brain fog required to study. They don’t have to juggle the stress of trying to keep themselves alive and constantly fighting a medical emergency and a level of health that should keep them in bed, with the stress of university and PTSD smashing through their mental state like a wrecking ball. The are healthy. I’m not. I can’t keep up with them. I wish they could see how lucky they are, but then again it’s all relative.

My brain has taken a long time to turn around and face its feelings towards my health issues. Denial reigns supreme inside my skull, but denial got exhausted lately and stepped back to let reality take the helm.

I am breaking in so many ways for so many reasons (most of which I haven’t mentioned even here). And I finally reached the moment where I couldn’t hold it together any more.

In the middle of a lab (where we were running a glucose oxidase assay to test for diabetes in a glucose tolerance test – I mention this because as a type one diabetic I am still stunned and kinda frustrated that even second year biomedical science students dismiss diabetes and don’t seem to be able to distinguish between the two types). I sat there feeling like a burden, wondering if they’d notice or care if I died and deciding that they all needed a break from my presence and it wasn’t fair of me to hang out with them, so I’d sit at the back in lectures alone.

“And what if this tear in my side

Just pours and pours and pours?

I wonder if they’d notice that I’m not around

The loss of a lonely man never makes much of a sound” – Frightened Rabbit, Yes I Would

More than that, they were buckling under just a fraction of what I was trying to deal with, and just because I wore a smile and hadn’t broken down on them like a few of them had with me, they thought I was ok. I felt invisible. I felt misunderstood, because nobody, nobody, seems to be able to grasp how serious my health hiccups are right now and how dangerous the situation is. They say I look well, but they’ve never seen me well. I am chronically in a state of mild acidosis here, and they’ve never seen me out of that. They’ve only ever seen me in a state that feels so awful that the first few times I was in it I actually went to hospital. In the middle of the lab session, my mind decided it’d had enough.

The dams of my eyelids were breached, and the tears came. Before the tears entered the world, I took off my gloves and my lab coat and excused myself from the room, dragging HK Uni Friend with me. WR Uni Friend (who I was working with) asked if I was alright. The answer, for once, was no. I left the room with HK Uni Friend. I stood by the lockers, pressed between their cool metal and the wooden fire door, and I just broke. I cried. And I don’t cry (there have been times when I’ve cried an irritating amount, but it takes a lot to make me cry). Hk Uni Friend knows the extent to which I refuse to cry, and so was extremely alarmed at the sight of my tears. She knew something bad was up, and I was embarrassed because it probably seemed disproportionately so. All I could say in answer to “what’s wrong” was everythingI don’t know… I can’t even… WHY AM I CRYING?!

I didn’t want to be crying. I was angry at myself for crying, yet each time I took a deep breath and tried to pull myself together, I’d think about one aspect that was proving too much and just cry again. I felt weak and pathetic and so, so stupid. And I just kept asking, why am I even crying? The response: “Because you haven’t for too long.”

I was sat in that lab with people who thought their worlds were ending when mine very nearly does on a regular basis. I was sat with people fortunate enough to have no idea what I was really going through, and who for that reason thought we were the same. One of our friends went to the emergency department of the hospital yesterday for a (admittedly very) sore throat. At the mention of the word chest pain the doctors completely overreacted and did very thorough testing to make sure the individual’s heart wasn’t about to explode or something. People made such a huge deal of it. The individual got outpourings of sympathy.

Maybe it’s because I have a different perspective. Maybe it’s because I don’t go to hospital unless I know I’m going to die within a few hours if I don’t (ok well that isn’t even the criteria any more because even that didn’t make me go last week). Maybe it’s because whenever I’ve been in hospital, I get forgotten, I stay alone, and I hate sympathy and cringe and squirm when it is directed at me… But I just suddenly felt a world apart from everyone in the room.

I carry on when others would buckle. I get out of bed when even I know I should stay in it. I push on through things I shouldn’t be able to get through without urgent medical care and I walk around feeling more unwell than a healthy person could ever comprehend (flu? I’d take flu any day of the week. Except my body would let it run riot and hospitalise me so maybe not… But to me a cold or whatever isn’t ill). I stood next to them all in a state I’m not sure they could manage, because I’m not sure how I manage it. I don’t make a huge deal of it. I play it down. I don’t over exaggerate and say I’m dying. I just carry on. Stubbornness is a weakness. Being too strong for too long is the biggest weakness of all. And reality found the fault-line in my denial at last.

I didn’t know how to face going back into a room full of people. Eventually we did (right after my headphones broke. Which made me all like asdfghjkl I can’t even what even seriously?!?! because music is my way of trying to cope a lot of the time). WR Uni Friend started saying she hadn’t meant to snap at me she was just concentrating. I think someone else asked if they’d done something wrong. When I assured them it was nothing to do with their actions, they dropped the subject. Uni Babe walked round and just hugged me. I instantly started crying again in a weird role reversal of our lecture the other week during which my shoulder was the one she was crying on. I apologised a lot as I cried. I said I didn’t know why I was crying. But she understands more than most and actually said it was quite justified. The others again started telling me that everyone was stressed over school and they’d all felt how I was feeling and I just said,

“You’ve felt half.” (Because they felt the uni side in isolation. I wanted them to appreciate that most of what seems to be freaking my mind out right now is actually my health too. Nearly dying terrified me this time, and with no denial to smother that feeling until it dies, I seem to just be losing it).

Someone got a bit moody and said that it was all relative to the worst thing you’ve ever experienced in your life so just because I’m dealing with way worse stuff doesn’t mean the reaction can’t be the same. I just looked at Uni Babe in a way that I hoped expressed the words these people do not understand. She gave me a look which said, I know pal. She just stood there with her arm around me continuing the rest of the experiment. And then one by one everyone was like

“Go and find [Uni Dad]”

But I can’t. I’m done talking to people because I’m done bothering them. I don’t feel like I can talk to anyone at the moment. Eventually I was dragged to find him, hoping and praying that he’d be elsewhere, and to my immense relief he was nowhere to be found. My personal tutor doesn’t like dealing with emotional stuff, so I didn’t bother going there. WR Uni Friend was with me and she said it was their job to “deal with this.” My heart sank again. This isn’t just uni stuff. This is uni stuff mixed with literal life and death, and the knowledge that I need to go to hospital but a crippling and illogical fear that is like a separate being that will not let me do what I need to do. It’s about living completely alone (which none of them do) and the loneliness. It’s about money worries and missing my dog and finding out yesterday that he’s developing cataracts and is too old to have his tumours operated on. It’s about being seriously and chronically unwell and just quietly carrying on, but wishing that someone understood how serious the situation currently is (and has been for a while). It’s about family stuff and feeling like I bother everyone. People are always amused that on group chats I apologise for messaging at the start of my contribution, and send messages apologising for burdening people and thanking them for putting up with me every time I hang out with someone. And then… After that pathetic lot… Then it’s the uni stress that gets me.

I’ve never let myself feel anything about my health hiccups before. I’ve never felt fear like this. I have an infection and I know what that means. I know that with my immune system and the diabetes that it will take hold and spread like a wildfire (despite the antibiotics I keep for this exact sort of situation, which I’ve started taking and are the right sort for this type of infection). I know it will put me in hospital, which means that it will almost kill me (because I don’t go to hospitals unless I’m dragged there unconscious or have at some point been in a heap on the floor). I know because I’ve been here before. This time it’s a soft tissue infection in my foot, so it hurts to walk and I can’t put my foot flat, which has messed up my ankle. My other foot is broken (healing, but still being walked on so…), which led to me tearing my achilles and calf a little when I tried running the other day, so I can’t walk properly on that leg either. Pain that I’m not used to experiencing makes me irritable. But, as pain is my body’s way of telling me no, it also makes every step an act of defiance, and that makes me feel strong, so I carry on through it all. It reminds me that I’m alive, and I hate the unpleasantness of it but sort of feel like I deserve to hurt and don’t want to waste anybody’s time with… Me.

I live wondering about when I will fall. It isn’t a case of if. I am in the early stages of something that has the power to very quickly take my life, and I stay here all the time. My body adapted to this normal, so the fact that I’ve been feeling unwell lately is not a good sign. I’m spending hours unconscious due to health hiccups that take it in turns to be the cause of my loss of consciousness. I’m fashioning rudimentary IVs and battling things I can’t hold off. I am fighting for my life. And every minute of every day, in the absence of my denial, I wonder how many more minutes I have before he comes for me again – the grim reaper, I mean. Every minute of every day, I’m scared.

After all this time. After so many brushes with death. I’m scared.

And it isn’t a phobia. A phobia is an irrational fear and this isn’t irrational. That’s the point. What makes it even more scary is that it’s justifiable. It’s a realistic, justifiable fear. I don’t know how to explain that to anyone without passing it on. I feel like nobody understands.

My friend (more like a wise old mentor) is a consultant, and for months he’s been saying that I’m carrying things that people twice my age haven’t ever had to think about and couldn’t cope with if they did, and that my mind is like a pressure cooker. He tried to get me to open up to him. He tried to get me to cry about it. He tried to break through my denial. But he isn’t a uni parent, so he doesn’t have the freakish power to make me do any of those things. I’m trapped inside my own mind and I hate it here. And nobody understands. I couldn’t face them. I didn’t even want to drink this time. I didn’t know what to do. I felt nothing. I thought forward and there was nothing. I tried to think of a solution and there was nothing. I was just numb. There was no desire to do anything, except the briefest imagination of me stepping out in front of a bus (but that was before I broke down). I just felt nothing.

So I’ve kind of withdrawn. I’ve gone back to my room (after a shopping trip yesterday I have Da Vinci’s notebook page on my wall – y’know, the anatomical drawing – and have significantly added to my funny/ inspirational postcard collection. I’m trying to make it a little bubble of science and inspiration and getting-it-togetherness). I bought a sketchbook yesterday. And I want to just draw.

I know this is pathetic, and you can judge me for it all you like. I don’t mean to sound ungrateful. I just honestly don’t know how to face the world right now. I don’t even know what to do. I’ve no idea who to turn to. I feel like I’m stranded on an island watching the entire world carry on yet so far from it all.

Thanks for reading this one. Really. My apologies.

Trying To Get It Together

I kind of knew my day was doomed when I woke up an hour and 33 minutes late, having slept through over 12 alarms.

Around 10 days ago I took a huge step and arranged an appointment for 9am today with a psychiatrist. This was a big, big deal for me. I know it doesn’t seem like anything significant, but to me it really was. I found myself melting down on Wednesday because I felt like a burden to everyone and everything and among other far more alarming things, I wrote in my journal, “I don’t know how to handle everything […] My life feels like a void. Will it always be so difficult? Will it always involve so much trying? Will I ever find someone or somewhere?” I couldn’t see a way forward and I couldn’t see a way to tolerate my own presence on the planet, and couldn’t understand how or why other people could.

“But what if I’m never thrown that bone?

And what if this tear in my side

Just pours and pours and pours?

I wonder if they’d notice that I’m not around

The loss of a lonely man never makes much of a sound” – Frightened Rabbit, Yes I Would 

(My phone spat out the above song while I was on the train home from Auntie Godmother’s. When I ran the day before that, it played This World Is Yours by Adam Martin – which is super motivational)

I’d say that what changed that outlook was a psychiatrist. But it wasn’t. It was Uni Mum. I met with her last night for the first time in months. We went to the pub. We had drinks and I ate food, and I talked openly and honestly to her because she’s the only person on the planet who I can be myself around and let everything out to. She understood (and related to) hating myself. We laughed between the serious moments and we talked about things I’ve been unable to even let myself think about. She could read me like a book, I couldn’t hide anything, and even when I resisted I was so comfortable in her company and so desperate to just let it all out that she won anyway and I told her it all. I always always feel like a bother and she knew that because she knows me better than pretty much anyone else that ever existed. She said she was there because she liked me, that she’d been told to steer well clear of me but that was never going to happen (it kind of did for a few months…). She rolled her eyes when I said the two words that both uni parents banned me from saying (“thank you” and “sorry”), she knew I’d send her a message saying both of those words after we met, and told me she’d respond with “hahahahahaha” and several swear words. I told her she had no idea what she’d done for me. She said the same to me. After 2 1/2 hours we parted ways and I hated walking home to be alone, but I felt better about my existence.

The reason why seeing a psychiatrist this morning didn’t change that outlook is because… I never saw a psychiatrist.

Background: I was already stressed. HK Uni Friend went to stay with her family in Paris a day before her coursework was due in, and needed the extra day to complete it. She decided to leave me her half completed coursework to submit, and gave me the responsibility of printing the other half from an email (I don’t have a functioning printer, and I was immediately stressed out at the idea that it wouldn’t send or print or something). I then had to attach it to the rest of her coursework and submit the whole thing. This was so much pressure and so much responsibility, and she didn’t seem to understand just how much the responsibility of looking after, assembling and submitting someone else’s coursework was stressing me out. There was an assumption that I’d definitely be able to submit that, and as I woke up to heart palpitations in Aunty Godmother’s spare room, I wondered if I’d even make it back to uni, let alone to my own lab session today (we got to play with starfish. It was so cool. They were from a coastal area of Kent that I visited often). I always stress about the fact that I may miss out on uni due to my health, or miss submitting my own coursework or attending my own lab due to health issues… I freak out enough over that. Adding the pressure of being present and functioning for someone else as well and I was just tearing myself apart with the stress. Stupid. No need for it. But it was there.

Further background: I hate being late. My parents taught me never to be late, and I’m usually stood outside (or sat in) my lecture theatres 20 minutes before the lecture starts because I’m so scared about being late that I overcompensate hugely to chill myself out. I get so stressed about being late for things. I had an appointment in Commercial Street at 9am. Between me and Commercial Street was a five minute walk from my room to the tube station, 2 stops on the central line to Liverpool Street, and a 10 minute walk. I messaged the number that the psychologist had called me from to tell her that I was running late. She’d said that she would email me the address of her clinic or whatever, and after 10 days still hadn’t, so I asked her for the details of where to go.

I reached Commercial Street at 5 minutes past 9. And I’d still heard nothing. I called. I messaged again. I went through every single email form the last 10 days (multiple times). I emailed her again. I looked on the website that had put me in touch with her and she hadn’t posted an address or marked her location on the map like everyone else had. My mum had told me that she was probably a con-artist and had somehow managed to convince me that I was going to meet a serial killer. I was getting later and later. All I could think about was HK Uni Friend’s coursework and when I was going to find time to go home and grab it.

Long story short, I ended up sat in a bus stop for 40 minutes until I was so cold that I couldn’t feel my hands to message any more. I called and called until the number stopped ringing with each call. I emailed. I messaged. I hated myself. And I hated myself. And I decided I was a huge screw up who could do nothing right. And into this very destructive spiral my mind went, until I was sat there freezing cold, trying not to cry.

Eventually, feeling completely awful and 100% blaming myself, I left the bus stop and headed back to the station. My eyes were brimming with tears. I cried but those tears never fell (if that even makes sense). I stopped in a shop and bought food and drink (I was so dehydrated that my tongue was stuck to the roof of my mouth and my lips were stuck to my teeth – which is ironic seeing as how since my run I’ve completely puffed up and ballooned with ascites and excess fluid generally everywhere). I then stopped in a café and bought myself a baguette, kind of crying into my phone as the cashier stared at me in alarm. I at in Liverpool Street Station because I just couldn’t handle the idea of heading home. I didn’t want to go anywhere or do anything. I got a grip eventually, and headed home with this horrible heavy hatred of myself sitting inside of me.

Blah blah blah… Met Uni Babe (who freaked out at THE IDEA of being responsible for handing in and assembling someone else’s coursework), headed to someone’s flat for a surprise party organised by a group of friends who are so sweet (I don’t really hang out with them much, but I joined them all anyway because I’m all for putting myself out there at the minute). I struggled to stay awake. It was so embarrassing. The person whose birthday it was started chatting and then mentioned that she’d just started seeing a cardiologist because her heart occasionally beats a little too fast (but in a normal sinus rhythm). She said she saw him at the hospital where I see my current cardiologist (the only doctor I’m willing to see right now, because hey I want to run). I spoke up, and it turned out we see the same consultant. WEIRD. SUCH A SMALL WORLD. She is as interested in cardiology as I am, so we walked back to campus together chatting about hearts and how fascinating they are (such nerds, I know) and she asked if we can meet up just to chat away about cardiology. Erm… YES!

I had a small meltdown because I genuinely didn’t have enough time to go and get HK Uni Friend’s coursework from my room. I was almost late for my lab because I went back to mine to get it. I didn’t have anything I needed for the lab. We were meant to print the entire booklet. I hadn’t. I hadn’t even looked at it. I was falling asleep, and I was drinking and drinking and puffing up like a balloon but my mouth was dry. For a few hours we stood looking at slides of starfish under a microscope. Then we held them. Our lecturer had discovered and named the neuropeptide we were studying, which I found so cool! Seriously, how awesome would it be to be able to say something like this?! I’m often in awe of my lecturers and their achievements. I turned to Uni Babe and decided that I’m going to see my cardiologist and actually be honest about my attempts to exercise in hope that he can actually help me get back to exercise…

Then I went home and changed into running gear. I wanted to run. I didn’t care if it killed me (I think a small teeny tiny part of me hoped it would, but that wasn’t why I wanted to run, just a potential happy accident). I just wanted to be free like running makes me feel. I wanted to be happy. (Uni Babe told me that running three times a week has the same effect as taking an anti-depressant every day. I can see how that could be entirely true). I woke up three hours later dressed ready for a run. All I could taste was the unmistakable tang of acidic bodies (ketones). I was in the start of acidosis (I’m always in the early stages of acidosis at the moment. Have been for over a week. My body has adapted, but today it gave up). Suddenly my all day tiredness made a lot of sense. I had a huge problem, a huge lack of motivation, a complete incapability to face the problem, and a huge desire to go for a run. On top of that, my own coursework is due in tomorrow, and I’ve been feeling so awful over the past week that my brain just can’t even, so I am currently in a huge panic about that too.

I injected into veins. I drank 4 litres of fluid because I was so thirsty I couldn’t not. I stared at myself in the mirror – at least I didn’t look unhealthily thin now that my cheeks have puffed up a little and my stomach has ballooned so that I look pregnant. I didn’t know how to deal with everything. Like… I can’t even. There’s so much I need to do. And I’m going back to my family home for the weekend (which I know I will regret, but I miss my dog so much and I miss being around other humans – even if I know the company I’m in will be awful for my self esteem… I also know that after being there, coming back home to an empty room will be so much more difficult… Although my little brother may come back with me for a few days and we’re so close now that we live apart – we talk for a couple of hours 4-6 times a week now!)

I’m stressed beyond relief for such stupid, stupid reasons. But the thing is, life goes on. Time keeps moving and the world keeps turning. What feels like everything isn’t… And yet it feels so important that I’m struggling to handle everything.

I did meet a first year who is having a worst first year than I did, but that’s another day.

And my old journal/ notebook got filled up, so on the way home from Auntie Godmother’s yesterday I stopped in Embankment Station and bought myself a new notebook to try and start over. I’m trying so hard to get out of the rut I’m stuck in.

Processed with MOLDIV
Left: Old. Right: New. I shall aim to be super like the animals on the cover (and at the bottom of every page) of this notebook. People call me superhuman because they are convinced I should probably be dead already… But I’m really not… And I kind of want to just… Be able to handle life. This is my attempt to get a life or die trying. Probably because the first three pages are filled with an 11 week running plan… 

Sorry this junk went on so long.

I’m really really trying. In every sense of the word. Today wasn’t even that bad, it’s just the tip of a very large iceberg, and it was topped off with the grim reaper calling my name again and I don’t know how to stay out of his company. I can’t university right now. I’m such a poor excuse for a student. Compared to everyone else I can’t put in the work and I’m so inadequate.  Maybe I should leave? But no. Not doing that. I don’t even… I can’t even… What even am I saying/doing? I’m rather pathetic right now, forgive me.

I just got a message from HK Uni Friend saying she randomly went for a 5km run and it was surprisingly easy, and honestly, for reasons that if they aren’t already clear then I don’t know how to explain… It felt like being shot. I’d love to just for the sake of it go for a random 5km run through Paris, and for it to be so easy that I could message people telling them. I’d just love to run. I’d just love to be a little more healthy, just for one day. I don’t mean to be ungrateful, just today I can’t even.

No way but through. Somehow. I hope.

I’m trying to get it together, I promise.

I just have no idea what “it” is…


Sucker Punched

There was a time when I hated them for giving up. But now I think that would have been kinder – to leave this, to leave me, to stop the emotional roller coaster. Today I hated them for wanting to try – half heartedly, reassured by the fact that I’ve been out of hospital for a few weeks, deciding we won’t be scared by numbers spat out by a machine… Impressed at the intelligence I displayed in making and implementing my own treatment plan… My consultant sat there and I knew from his hesitant and carefully picked words that he was waiting to deliver a punch. 

And then it came. Things were looking reassuring almost, but we are still looking at a very complex situation. Which meant we had conversations I wasn’t ready to have yet. He wants me to see some doctor who is one of the only people in the country, apparently “arguably, the world” who has any idea how to help this hiccup. He is highly specialised and way more in the know than the guy I just sat in front of – the consultant who took me away from the care of the one doctor who was trying things, who understood the impact on my mental health too… He’s giving up, he’s passing me on. He stole me and he won’t even keep hold. 

I won’t tell you why I’m sat on the London Underground typing this through tears that are tearing their way through the mask of calm I have tried to wear. But I will tell you that before I made it to this train, my feet took me to the pub by my uni. And I downed a pint before I could face the world again. It was that bad. And I broke, and I gave up, and I wanted to throw myself in front of every car that passed, and I wanted to scream. And I couldn’t. I can’t. I don’t know where to turn. I don’t know how to do this. I will stay on the planet, I won’t do anything stupid, but I walked through London dead inside. I am dead inside. I have nothing to lose. There is nothing to save.

I am crying in public. I am filled with dread. I cannot do this.

I don’t want to do anything. I don’t even want to blog. Initially, I wanted to run, to just go and go and go. And now I don’t know what to do.

Before that appointment I just sat in front of the main entrance to my uni staring up at the beautiful old building and watching the world go by for over an hour. Yesterday was forgotten. I was happy. I had all my swimming stuff but I never made it to the pool. Before I knew where I was walking I was at uni, and there I stayed. I should have stayed there. 

I am done.

I have nothing left to give and no emotion left to bleed.

I need to fall off the rails. I need to hurt this one out and let it tear me apart because I am already powerless against it. 

There is nothing left.

I have nothing left.

There is no hope.

My god, there is no hope left.

And I don’t know what to do. 

I am not broken, I am not crushed… I am more than that. 

I am done. I am gone. I am so worked up I’m having heart palpitations and I am so downtrodden that palpitations are not enough. And now I’m crying my way through Cannon Street national rail station, and don’t worry – I don’t… I don’t… When did it all go so wrong? 

I need some time.

I know there is a way through this, but right now I am nothing. Well, I’m a crying, slightly drunk mess on a packed commuter train. And nobody cares. Why would they?

I’m so pathetic and I’m so done. I’m sorry. 

I’m not going to do anything to induce the grim reaper’s presence. I could never do that to the people stupid enough to waste energy caring about me. But that is it now. There is no defiance. There is no… Anything. I am nothing. 

And the two people I could trust with this haven’t spoken to me for months.

I just can’t stop crying.

I can’t believe today happened. I knew that even “just about clinging on” was too good to be true. 

I hate myself for being so pathetic right now.

My world just fell apart in that clinic room. I want to go back to uni, I need that back, it will get me through possibly. I don’t even… 


“There’s nothing left to say now, I’m giving up” – Imagine Dragons, Nothing Left To Say

I can’t even words any more. I can’t even cry any more.

The Overflow

“Even the little things were now a challenge, one I didn’t understand” – Sarah Todd Hammer

There comes a point in the great tunnels of denial that we burrow ourselves into, when the roof caves in and bright, harsh daylight streams in to illuminate all the things we wouldn’t let ourselves see. I am not an idiot. I know my body is nowhere near what it used to be. But it is better than it was a month ago, I can now walk. I feel so much better, so strong, and yet… I am not what I thought I was. As I walked my dog for the second time of the day with my fellow third wheel last night and he encouraged me to stop and slow and say if I needed a break, I realised it was ok to admit my incapabilities to the pair of us… And I realised just how much I was wrecking my body in forcing it to walk so far (not far at all, just round the block, but way too far for me) again. As I pushed through dizziness and an inability to breathe because we had encountered a slight incline, I wondered when things had actually become like this. And I wondered why. Not why me or anything like that, I am perfectly accepting of the fact that this is the way things are and incredibly grateful to have been spared much worse, but I wondered why my body struggled so much. Why is it such a poop? Not a sort of why that you answer with a cause, a why that you answer with an explanation of what exactly has gone on in my body to leave me in such a feeble state (I already know but hey, denial and tiredness!) My inner scientist broke out and my inner frustration broke out and I wondered why it couldn’t do such a simple thing. It just didn’t make sense to me. At all. Suddenly I was confused by… Myself.

My fellow third wheel and I walked and talked and made plans for him to come and move in for a week when my family are on holiday and I’m home alone with my furry rock. We went back to my house and planned to watch TV in the kitchen, but my little brother and nephew kicked us out, so we sat on a step in my back garden with the dog, and we talked for well over an hour until it was dark out. We talked about service dogs. We talked about how I deteriorate so quickly now with no warning and no symptoms until way too late, and that it would be incredibly helpful to have an early warning system, which would mean far less hospital admissions and ICU stays (which is great because of the whole PTSD and hospitals thing). And then because we could, we looked at puppies and completely freaked at the cuteness of them and laughed a lot and shouted about the fluffiness so many times I was surprised none of my neighbours came round to complain. And I fell in love with a labrador-husky cross, and my fellow third wheel encouraged me to just ignore my parents and listen to the doctor that suggested the whole idea and just get a puppy and start training it.

He wanted to stay as late as was possible, but ended up getting picked up around half eleven after we watched a film. I say we watched a film, but in actual fact we just had Skyfall as background noise to our continued conversation about service dogs – the issues and the hiccups and the problems and stuff that were stopping me getting a puppy and training it either through the charity or privately, and potential solutions to those issues. My fellow third wheel invited me to stay over at his at some point so we could talk it all out some more, and has said I’m welcome to just appear at his house any time (obviously when he’s home and not busy). We spent four hours together and I was glad of his company because he stopped me overthinking the whole excuse me body but what even is this shocking incapability and now that I think of it when did I actually stop being that person that used to run along these pavements every day? thing that was suddenly a huge bother to me.

I just couldn’t work out when. I couldn’t work out how. That’s it. That’s the word, not why but how. How did this happen? How did I end up here? And when? When did this become normal? Did I just feebly roll over and accept it? Why did I accept it? Should I accept it? I don’t even know.

My fellow third wheel left after a long hug goodbye, and I sat down to type out my service dog benefits and draw-backs in a letter to try and shut my parents up basically (I don’t even live with them, but they made it clear that if I get a thing that will save my life then I’m not welcome in this house and I have to find a way to afford all of my London rent by myself – even though my uni fund currently pays it, they seem to have control of my uni fund and therefore may as well have a gun to my head). That started to happen. And then from absolutely nowhere I decided I wasn’t accepting it anymore. But “it” wasn’t their objection to a service dog, “it” was everything: being treated like a child, being made to feel like a substandard human being, being made to feel guilty by selfish attitudes, being judged and shouted at by my own parents for having PTSD, being put down and moaned at constantly, being scared, not feeling like I am respected, feeling like I’ve lost my independence and am more 20 months old than 20 years, shielding my mother from all the things that get to me to spare her feelings when she doesn’t even consider mine when she decides to rant about my health and make me cry…

5,000 words poured out of me. 5,000 words. I cried a couple of tears with almost every paragraph. The things I was writing about hurt. They were things I’m not allowed to talk about, opinions I did not feel allowed to voice, truths about this family that nobody will face and the impact that toxic familial relationships had on me. I put it all out there, how I felt, the impact of everything on me, because she never pauses to consider how I may feel, only rams her point of view into my mind and forces my own to fall out like overflow. I got angry at how selfish that is. I felt sorry that she was so broken because of me. I let it all out. Stuff I’d kept in for years (and the family feud that is apparently about me, which is petty and abominably selfish and insensitive and made me want to cuddle up with the grim reaper instantly but thankfully briefly until anger took place of that feeling). And I don’t know if I’m going to let her read it. I want to, but she hates to read the truth.

She hates to read what the people she picked for me to call dad (two of them – the one who made me abandoned me when I was born) did to me, the emotional scars they left. She refuses to accept a lot of the way I feel and refuses to listen to me because she lives in her own bubble of denial. She does a lot of the things she dislikes when her own mother does them. She doesn’t understand me and she just shouts whenever I try to talk to her. But I can’t do this any more. I can’t be in this house. I can’t do it. I feel so small and downtrodden and like an unwanted burden at the moment. I can’t do anything right – someone is moaning at me all day every day. Tiny things, they moan if I don’t load the dishwasher (which my little brother, who actually lives here still and is 13, never does) and then I get shouted at because I put the plates in wrong. Things like that, things that make me feel like if I can’t even do that right I must be a substandard human being because I screw up everywhere.

I am tired of my dad not understanding science at all and being convinced I am responsible for my own health issues (HELLO. NOT THE CASE). I am tired of being told off for sleeping when I’m unwell and can’t help it, and being shouted at for not doing chores because I’ve been home all day while my family “are all tired too but we’ve been at work and school all day and you’ve done what?! Nothing!” I know my body sucks. But on the days when no glucose at all is getting into my cells and my body has nothing to burn for energy, my body just shuts down. When my heart can’t heart any more, my body crawls off to sleep. When my blood is becoming acidic, I do nothing but sleep… (See the pattern here, it isn’t even a normal sleep, I don’t wake feeling rested. And tiredness isn’t the word, it is pure exhaustion, I can’t even keep my eyes open or lift my head or stand, let alone walk).

I realised they don’t ever hold back before just letting everything out at me, before taking their frustrations with work or each other (or mostly my health) out on me, and that maybe I shouldn’t shield them from my feelings for a change. I just want them to see. I don’t trust. I don’t feel close to my family and haven’t for a long time for reasons I will not discuss, but I want to feel close, and it makes me hate myself that I can’t let that happen. I let it all out anyway. And I’m terrified to let her read it (my mum) but I think she needs to. I don’t want to hurt her, but she needs to know why I am hurting, she needs to know the effect her actions have on me when she snaps and says stuff she doesn’t mean like “You’re ruining my life” or “You are pure evil!” She needs to understand that even if she doesn’t mean them (and denies ever saying them, which is why I occasionally record her rants so I can listen back and check I’m not insane) the things she says hurt me. Just because a few hours later she doesn’t feel the same way, doesn’t mean that I’m not allowed to have an emotional reaction to the words she threw at me, doesn’t make everything ok, and doesn’t undo the damage that by that point those words have already done. I know she doesn’t mean them and I’m still stupid enough to let them get under my skin. It’s just what she does. I care about her and I am worried about hurting her feelings, and a little afraid of her reaction.

I am so distant. I have been distant from a lot of people for a long time. It is lonely and isolating and I hate it but at the same time it feels so much safer and I can’t help it, it is a defence mechanism. It’s what happens when you’ve been through the stuff I’ve been through. I don’t expect love and I don’t look for it anymore. I don’t feel loved and I haven’t for a long time, by anything other than my dog. I don’t trust. At all (unless something has four legs, huge canine teeth and a tail). I hate living this way. It is isolating and horrible and it only leaves more room for depression to spread its wings but I can’t help it. My mind is an animal and it learned. It learned things it cannot unlearn. It learned that humans will hurt you. All of them. The will beat you, they will make you bleed, they will belittle you, they will shout, they will make you feel like less than dirt, they will put you down, they will let you down, they will bruise you, they will scar you, they will bully you, they will manipulate you… And they will always get away with it. And long, long after they stop inflicting the pain, you will pour the poison that fuelled it into your own thoughts without any input from them.

I guess I’m trying to bridge the gap between me and my mother. I feel she should understand me in ways she currently seems incapable of because she can’t see past her own frustration and judgement and… She needs to understand the way I am and why. My family need to know what they do to me, but for the sake of us all I couldn’t mention the specific things that have been done. The past is the past and onwards we move. Examples wouldn’t be believed anyway, like I said, she lives in denial, and who am I to take her from it’s peaceful, sandy shores?

I didn’t know how to show her, how to make her see. And I didn’t know how to keep her heart whole but I know I break it every day. I explained that in the letter. I explained that my family sometimes make me feel like they’d be better off if I was dead, but that I know they’d hate me for running off with the grim reaper and death, and that if I stay of if I run from existing, either way all I can ever do is hurt them. It’s how I feel. This is all just how I feel. My family are nice people. I’m just a bit of a dick, as you know.

Anyway, tonight it became apparent to me that I could never walk 1,000 miles (I would literally fall down, but not at somebody’s door like in the song by The Proclaimers, instead after about 2km), but I could write 5,000 words. And I did that. Because it was an equally big step and an equally long and difficult journey for me.

I said I let it all out; however, the scary thing is, I was just emptying the overflow. There is so much more I can never let out. Bigger stuff. Stuff that matters. Stuff that broke me. Stuff only the people involved know. It would do too much damage, cause too many problems, break too many hearts. So I will let it tear me apart and I will bury it and hope the past fades to nothing. There are also so many feelings around the severity of my health recently that my healthy family would never understand. The crushing weight of everybody’s expectation, my worries that university is going to be as unsupportive as they were last year (although for once everything is so bad all at once that university doesn’t matter right now). I miss being at uni. I miss London and independence and adult conversation and intellectual stimulation and I want to go home. But I know I will isolate myself in this frame of mind and that makes everything worse, and I’m in a room alone not sharing a flat and nobody will even notice if I collapse there and I could just die and nobody would know for days (this one is a stupid teeny tiny illogical worry but hey let’s throw it in while I’m emptying the overflow tank of thoughts).

I am filled with dread and I don’t know what about. There isn’t one aspect of the future responsible. It’s all of it. All of it.

“Physically, mentally, emotionally – it seems like every part of me is broken in one way or another” – Patrick Carmann, Skeleton Creek

No way but through. 

Forgive how pathetic this post was, this is just my only place to vent. Oh wow it’s now August. And also suddenly 4am. No point sleeping now, I guess. Can’t bring myself to re-read this. Sorry it is so long and sorry for the mistakes it is probably filled with.