Blunt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Testing The Water

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

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

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

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

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

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

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

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

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

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

My thoughts throughout the whole event went something like this:

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

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

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

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

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

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

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

Edit: You’re doing it again now. 

I Can’t Hide It Any More

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

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

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

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

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

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

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

But my body was not.

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

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

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

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

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

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

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

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

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

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

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

I Let It Run, Because I Can’t

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Literally. What. Was. This. Post?

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

Over & Done With

I’m moving back in with my parents.

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

I am no longer a Londoner.

London is no longer home.

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

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

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

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

Kent is home again.

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

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

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

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

Other stuff that happened yesterday:

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

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

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

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

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

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

The Things I Tried Not To Think

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

25/12

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

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

She said: Just go wherever it takes you.

I said: I feel very lost and very unhappy.

She said: Obviously.”

That was it.

26/12

“They will let me go.”

27/12

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

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

This was the day we had Christmas with my grandparents.

28/12

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

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

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

Having you around makes our family… Difficult

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

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

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

29/12

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

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

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

30/12

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

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

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

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

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

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

31/12

“I am increasingly becoming obsessed with cleanliness and disinfecting

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

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

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

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

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

I don’t know what to do with my life.

My dog thinks my bed is now his bed.”

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

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

31/12

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

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

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

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

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

1/01

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

What do I want for the next 364 days?

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

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

I am poison

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

And then I wrote out this

“[My name]

9/3/1996 – 7/8/2012

RIP

I just want to be I.P”

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

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

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

They don’t know how to not un-help

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

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

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

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

Feeling is so, so much more dangerous than not.

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

Something From Nothing

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

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

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

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

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

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

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

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

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

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

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

I am trying very hard not to do… Nothing.

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

 

Does Anything Else Matter?

When my alarm went off at 8am this morning I was faced with a dilemma: to 9am lecture, or not to 9am lecture? This question was answered for me when I was swiftly taken hostage by the comfort of my bed, and proceeded to hit the snooze button on the five separate alarms I’d set until I had 4 minutes until the lecture started… And happily settled back off to sleep instead. From those that went to the lecture, I’ve heard that this was a good call. I was not the only one that missed it.

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I did all this instead.

I was waiting to meet with SC Uni Friend, but she wasn’t replying to my messages and by the time late morning arrived I was going stir crazy stuck in my studio/room/whatever you call it. So I took myself to Stratford Westfield shopping centre, and treated myself to a sourdough pizza. It looked amazing, but it was a disappointment compared to last time.

I spent the rest of the day sort of re-living my childhood. I wanted the gingerbread that I used to get when I was a little kid, so I found it and ended up accidentally buying a load of shopping that weighed so much I had to just wait for SC Uni Friend to rescue me at the tube station nearest my accommodation and help me carry it home.

And then I continued to re-live my childhood. I’ve been doing that a lot lately, clinging to the past, to familiarity – because familiarity feels safe and comforting and everything in the past (although there are some truly horrific events) I managed to get through, and somehow coped with better than current reality. It started with the fact that when I went home I put on the beaten up old trainers (seriously these things should go in the bin) that I hadn’t put on my feet since I was in my last year of sixth form but until that point had worn every day for two years. Since then, they are all I’ve worn. They are familiar. They remind me of a time that sucked (honestly I’ve almost died in those shoes, been suicidal in them, been bullied and torn apart and overwhelmed and even ran away in those shoes…), but that I was able to live through and beyond. They remind me of an unmeasurable and unbearable unpleasantness that I learned to deal with – one that I know how to handle now. And today that desperation to cling to things like that spread to the places that I went.

When we were younger, my parents used to drive us to London for the day and we’d go round the museums. Honestly, it was my FAVOURITE thing to do. So my friend and I headed to the Natural History Museum together, and it hadn’t changed at all, other than the ice rink and Christmas decorations now outside. It was amazing to be in this little bubble of my 11-13 year old life. The exhibits were all the same. The same huge blue whale hung from the ceiling and we both hunted for it for ages until we found this room that we remembered from our childhoods and we sat and just stared at this whale, at all these things I remembered.

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Looking at the blue whale. 11 year old me has never been as stunned as I was when I saw the size of this whale hanging from the ceiling. 

I spent ages hunting for the real human brain and spinal cord that I used to just stare at. I mean… now I can say that I’ve touched them in an anatomy lab, but back then it was so fascinating to me, and I wanted to go back and see it, even though it was less awe inspiring to look at now. We passed the giant model of a cell that my mum made me take a photo of before my GCSEs started. As a family we’d go to a different section on each visit so I’d only seen bits from each section once but it was just like I remembered only… Underwhelming now. When I was 11-13, I knew none of it, so it was interesting and informative and it blew my tiny mind, quenching a thirst for knowledge. Now, I’ve done all the human biology to degree level – SC Uni Friend and I could have written the exhibit. It was so sweet to think about how amazed I used to be by it all – it was my old heaven on earth, and being back in the scene of such memories… it was like this big emotional comfort blanket.

You know you’re a biomedical science student when you look at the human skeleton they have on exhibit (very basically labelled like this is your thigh bone. It’s very long) and immediately notice that it is the skeleton of a female… Then begin to discuss this with your friend, who agrees. It was like being face to face with the evolution of myself in that moment right there, and also like standing next to my 11 year old self. I found the exhibit I used to LOVE really boring and basic because I knew it all in so much more detail, but it was good to know that that thirst for knowledge I had at that young age had led somewhere – I was doing a degree in a subject that even then I loved.

We hung around and said hi to the statue of Charles Darwin sat looking over the entrance hall, and took photos of the big dinosaur that is soon going to be moved but that has been there FOREVER. And it was so nice. It was nice. It was like travelling back in time to before the worst – before the PTSD and the starting to almost die every few weeks and the hospital admissions that lasted years. Plus, I found that now that I’m older, I’m so much more interested in the science and anatomy of the other animals in the other exhibits, and the evolution of modern species and just… yeah. It was cool.

We waited for it to get dark and then decided we should probably leave, mostly because Pizza Express does 40% off for students on Mondays and Tuesdays and we refused to miss out on that deal.

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Looking over the ice rink (which is a lot smaller than the advertising made it look)
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I could not get over THE TREES. Look how beautiful!!! They only showed up on my phone in the dark.

Like I said, we’d decided we wanted pizza, so we headed for London Bridge. And I was so mortified that I wanted the ground to swallow me whole.

I got on the tube, and I walked to hold onto the rail, and this young woman gave me her seat. Because she thought I was pregnant. Now this is funny. SC Uni Friend thought it was funny and laughed and kept referring to me as “you two” but it really, really wasn’t funny to me. I’m a 20 year old girl, full of insecurities by nature, particularly surrounding my health. I laughed but inside I crumpled and screamed and tore myself apart and took knives to the walls of my mind and let the blood pour. Inside I hurt.

But… I did look pregnant. I mentioned in another post that my legs were extremely swollen and I couldn’t really breathe… And that situation remained but had slightly improved this morning. As I went through the day, my heart rate got faster and faster, it began to ache, I got breathless, and my usually concave stomach (not flat, if stand side on then after my ribcage my stomach sort of  goes in by a good couple of centimetres, because I’m hideously, unhealthily thin at the moment) had become convex. Fluid is pooling EVERYWHERE and it seems to be getting worse. I looked like my aunt had until she gave birth. Seriously. My ribs are usually further forward than my stomach, and today my stomach ended up further forward than my boobs. Look.

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My stomach used to be completely flat, but as my health has deteriorated it has sunk back past my ribcage. Not today… This was taken an hour before I was given a seat on the underground, at which point it was even larger than this. Might not look very big, but compared to normal it is RIDICULOUS and my stomach is so stretched and tight that it’s super uncomfortable. It’s all fluid, not a mini-me, just to clarify. Fun times. 

Anyway the pizza was amazing, and I got a few awesome photos of Southwark Cathedral, and awesome panoramic shots of the Thames and Tower Bridge and the Shard from London Bridge. The Christmas trees at the top of the Walkie Talkie building were so huge we could see them from ground level. London is really getting into the Christmas spirit and… It’s a little bit magical.

What’s also magical is that my family friend from Reading messaged me earlier today for a chat and asking to meet over Christmas. This evening my old friend from sixth form who was like a brother to me (honestly, we saw so much of each other and I helped him through a lot and we’d be on the phone for HOURS all the time) but then got a girlfriend and forgot I existed, messaged me for the first time in a year asking to meet up over Christmas. And Uni Babe has invited me to her family Christmas party on the 23rd. So that’s nice. Especially the two friends I haven’t heard from or seen for ages – familiarity. Old times. What my brain wants right now, to hide, to crawl back in time to before this.

I saved the best part of today until last.

In the very early hours of this morning our family was given an early Christmas present that nothing could top – a new family member, new life. My uncle, who has lived in Hong Kong since he was just older than I am now, welcomed his new baby daughter into the world with my aunt via a pre-planned c-section. I slept from 4pm-9pm yesterday, and woke to see a post online stating that my uncle (who never feels anything really) was “feeling blessed” above a status which read T- 2 hours 9 minutes.

I fell asleep before those two hours passed, but woke to a picture of an ADORABLE baby girl with a lovely name, and instantly I wanted to hold her and tell her happy birthday and say hi to the youngest grandchild from the oldest grandchild. It was just a happy day for our family. My granddad, who has social media but never uses it, shared the photo of his newest granddaughter, and it melted my heart a little (also because the caption was “h” because he seriously has no idea what he’s doing). My mum messaged me and eventually called me because she was so happy. My uncle called everyone… We all talked over social media… It was just nice. So anyway, I got a new baby cousin, and sometime soon I’m going to be so happy about that.

Does anything else matter?

Timeout

I planned to go and soak up some more Christmas spirit today in an attempt to immerse myself in so much Christmas cheer that I might actually feel something of the sort… And then lectures destroyed my soul so… I bought a load of pastries and came home and my bed was too comfy so I got in it and now I’m still here…

I feel bad for staying in, because despite Christmas seeming to last for two months nowadays, it doesn’t actually last that long and there are SO MANY magical things to do and see.

I’m feeling things again, but I’m not finding positive feelings. I’m not finding joy in anything at all at the moment, but I’m trying to reconnect with things that have made me happy in the past and trying to build up to a normal human level of functioning again. Being by the Thames, wandering through London, just soaking up this city as I wander through it…  It used to make me smile. It lifts some of the weight now, it stops me stewing in my feelings alone in my flat, but it doesn’t trigger anything positive any more. Which sucks, because I found my Christmas spirit in October (it was cold, it just felt like Christmas, and no I don’t understand why either) and now that I should actually have some… I’ve lost it all.

Christmas is a nice time. Everyone is all wrapped up in coats and hats and scarves and there are little kids everywhere experiencing the magic of Christmastime. Their parents are all protective and dads wear their kids on they shoulders like scarves and these big tough guys are reduced to teddy bears around their offspring and I usually like just watching that adorableness of daddy-kid interaction because I’ve never had that and it’s just… Yeah. It melts my heart a little bit.

Speaking of hearts… Things have been going well with that lately. I can walk around a little, but my friends don’t appreciate just how little, and so I pushed myself way too far.

When I woke up this morning, I couldn’t breathe. There was a crackle in my chest with each breath and a wheeze to accompany it, and I felt like I was breathing soup. It became much easier when I sat up, but I coughed so much that if there were Olympics for coughing I’d have won triple gold. My legs were so puffy at the bottom that I struggled to get my shoes and socks on, and my heart seemed to think I was running a marathon (and still does, because it refuses to slow down). I’d managed to sleep through six alarms and two phone calls. I was almost late for the first lecture I’ve attended in just over a month (time moves fast!) but managed to find time to throw on a Christmas jumper and a wooly hat.

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Today’s Christmas jumper (I genuinely only bought this because it has a dog on it)

The lecture was… Yeah… I don’t think anybody took notes because we couldn’t hear the lecturer and he wasn’t speaking particularly clearly. You can hear them much better in the lecture recordings, so I decided I’d just wait for that. I sent some emails. I bought Christmas presents for my dad (fancy coffee syrups and a couple of mugs with funny squirrel cartoons on – highly personal and appropriate presents with stories behind them. I’m good at thoughtful gifts, kinda have to be when you can’t buy great big expensive ones). I spent the rest of my time making a photo-book of next door’s puppy using an app on my phone. Ever since they got him I’ve been collecting photos of him for specifically this purpose, as they aren’t very good with technology and their camera isn’t that great. They haven’t taken many pictures of him and they love that dog like he is their child, so I’ve taken loads of photos of his first (almost) year from teeny tiny baby puppy to now, and I’ve captioned them all as if the dog is talking, and addressed the book to them from him. I’ll give it to them for Christmas as they’ve been so good to me and I sit in their kitchen with them for HOURS when I’m home. They always tell me off for buying the dog toys or trying to buy them flowers, but I figured they might actually want to keep this thing, especially seeing as it’s “by” their dog.

I’ve actually been looking for puppies online myself. I can’t help it. As soon as I live in a place that will let me keep an animal, I’m going to get a puppy and hopefully eventually get it trained up as a service dog, which will save my life literally and (let’s face it) emotionally – my dog is awesome at helping me deal with my PTSD and beyond-low self esteem. I’ve also been looking at new cameras. Although there was a lot more money in my bank account than I was anticipating when I checked my balance earlier (I thought my balance would be below £100) I don’t have enough free cash to buy one right now. I can’t find the camera I currently own, and my phone memory is almost full so… I don’t really know what I’ll do. I love photography – I fell in love with it after my right hand (the one I used to write with) was left half unusable by a surgeon, and I lost my ability to express myself through drawing. Photography is another art form in itself, and I bought a refurbished compact little Sony camera with incredible zoom and professional quality, and it lived in my pocket at all times until it died and was replaced by another refurbished (and therefore stupidly cheap) newer camera. Anyway, dreaming is a good distraction from reality.

Uni used to be something I loved, but it’s this source of uncertainty and at the moment it offers my mental state nothing. It isn’t taking pieces of me any more, but it is no longer putting them back and helping me to rebuild either. Between our first two lectures of the day and the last one, I did stop off on campus and buy a roast dinner, so I guess uni has some benefits still (the turkey slices were the thickness of about three normal slices, and they even gave out free Christmas crackers, which my Brazilian friend who grew up in China was very confused by, because apparently they don’t have those kind of crackers there). I did also tell Uni Babe about my nose thing, because three is a lucky number and so now three people know… Also because we had a very long and deep chat and she was reacting so perfectly that I took a chance on her. I’ve officially mastered the art of acting happy and normal, but Uni Babe acknowledged that this wasn’t good because it means that people will have no idea how much support I still need (unlike WR Uni Friend, who seemed to encourage it as a healthy way of getting through stuff until I can cope).

Anyway, I know it’s only 4:30pm here, but I’m extremely tired (not normal people tired, I’m grumpy heart tired, and that’s a whole new level of fatigue and exhaustion) so I’m going to go to sleep.

Tomorrow I will attempt to Christmas.

Today, I’m taking a timeout. I don’t want to end up in hospital again and right now I physically can’t get up and go anywhere.

Every Seven Seconds

Alone, at 2am, it hit me.

Weeks later than it should have, it hit me, and I was powerless to it. It wasn’t a near death experience this time… It was an emotion. It was something I should have felt but haven’t been able to for weeks, and it hurt so much that the heaviness was almost physical, it was an aching within me. I didn’t cry. I sobbed. Silently. Uncontrollably. And there was no dog for me to cling to. There was nobody to talk to, because I live alone.  There was just me, and this fear, this panic, this one single thought.

I don’t want to die. 

I’m not sure I fear death, in fact when I’ve been ill enough that I should have died it would have been a relief, an end to the immediate and intense suffering my body inflicts upon itself… But I’ve spent so much time in hospital that I haven’t lived yet. Not in the way I want to. I sobbed for something I will never be around to consciously miss. I sobbed because I was scared. Finally, here it was. The fear. It was a fear I had dissolved in my acceptance, a fear I had run out of the energy to maintain, and now here it was, fresh.

I’ve been told by many different doctors on many different wards that I could die. I’ve listened to doctors tell their colleagues they are losing me, that they can’t wait, that this is it. My organs take it in turns to rebel, to put me in an ICU or a cardiac ICU or wherever else I may end up. Sometimes they even team up. And I pull through somehow. I’m told that my body is playing Russian Roulette and it’s taken so many shots at me they’ve no idea how I haven’t found the chamber with the bullet yet. But oddly enough, it isn’t that what makes it hit home. Yes, nearly dying five times in three weeks shook me.

The thing that first got me was the fact that twice in three days I was nearly killed by a health hiccup that I never really classed as life threatening – and it wasn’t the first time but this time there was no thought or denial to slap over the wound that left. Although that triggered the start of everything, it isn’t what made me reach break point. It was hearing of other people my age who had been killed of my health hiccups that lit the fire. Most recently and specifically, hearing that a 19 year old boy treated by one of my health professionals had died of something I was already terrified of, after having evaded death due to it many many times. Type 1 diabetes killed him. And at 2am, I ended up watching a short film about diabetes and stem cell research. I ended up on the website about why the research is so important, and after scrolling down the page was faced with huge, great big letters that read, “Every seven seconds a person dies from diabetes.”

And I just couldn’t any more.

I don’t know what it was, but I now I should have been feeling it for a while, this panic… But not panic, but terror… But not quite that… About the uncertainty of the future, about how volatile my health is and how quickly it can take my life without warning and with me being aware but unable to stop it (as happened the other night when I just about saved my butt). It hit me like a slab of concrete in the chest and knocked the air from my lungs as I curled up where I sat on my bed, powerless to this thing tearing through me, these sobs bursting out of me. I sat there silently, crying so hard I couldn’t breathe in, and then gasping in air, trying to get a grip, and just going all over again.

Because the “harmless little normal thing” was suddenly this huge life threatening deal that it’s never felt like but always has been. There is no safe space in my body. I can go wherever on earth I want and I still won’t find a safe space because  I am tied to a ticking time bomb and it has to many fuses I don’t know which one is going to detonate it first. All I can hear is the hissing of the fuses burning down, and I stamp on them and try to cut them but they don’t stop burning and they don’t detach. Sometimes other people throw water on them and they stop burning away for a little while, and then out of the blue they reignite, or are set back alight by the health hiccup fuse that is burning alongside them. And I don’t know when. I don’t know when it’s all going to go off. I just know that it will and I don’t want it to. I really, really don’t want it to. And for the first time in… Potentially ever, I sat there and I looked at this statistic and it hit home. It hit home how fragile my health is, how fragile my life is. And in another first, I couldn’t find any way to handle that. At all.

I went to the website quoted as the source of the statistic that woke me up, and there it was, in black and white:

  • “Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes” source

  • “Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults” source

There’s so much misunderstanding around this condition. People, even people doing my biomedical science degree, think that I just can’t eat sugar, or that I ate too many sweets when I was younger or was overweight (confusing type 1 diabetes with the stereotype associated around the development of type 2 diabetes, in which the beta cells are totally fine and still make insulin). Type 1 diabetes is an autoimmune condition. The body doesn’t make any insulin at all. Insulin is required to let glucose into cells so that it can be metabolised. It also helps regulate potassium levels, which can cause cardiac arrest if they drift too far away from normal. Without metabolising glucose, you can’t carry out respiration efficiently. You don’t make enough of the molecule your body uses to provide energy (ATP), and the methods your body uses to generate it instead… Kill you. Now let me tell you why it gets scary.

Low blood sugars can kill within hours. They cause death through seizures, brain injury, brain swelling… Your body shuts down, because it has no glucose. Blood glucose levels drop without warning. Sometimes when you exercise (but sometimes that makes them increase instead for no apparent reason). Sometimes if you forget to eat. Sometimes because you did the maths wrong or you worked stuff out wrong. Sometimes because when you injected you hit a blood vessel… So many reasons. Few of them within your control.

High blood sugar levels are toxic to nerves, blood vessels… And can cause chronic health issues with other organs etc. When sugar levels in the blood are high, it means the sugar isn’t getting into the cells (unless you just ate way too much, in which case it’s slightly less dangerous and will kill you slowly instead of within hours). Your body has compensatory mechanisms, so it decides to get rid of all the toxic glucose in the urine. So you pee litres more than you can take in and become severely dehydrated despite drinking litres and litres due to an unquenchable thirst. This also wrecks your electrolyte balance. If sugar can’t get into your cells, your cells basically start to eat… you. They break down fat and muscle, and produce harmful chemicals that will kill you as they accumulate. This can lead to multiple organ failure, brain swelling, brainstem herniation… And irreparable damage.

People don’t see all the work you have to put in to try and stop that happening. When you eat, you have to factor in your blood glucose levels and calculate how much insulin you need to give to correct those, then how much insulin you need to give for the food, and then how much insulin is already active in you and therefore needs to be removed from the dose. Then you inject or in my case, use a genius little pump called Einstein who will calculate all this for you if you tell it how much carbohydrate you ate etc. You have to constantly monitor, because machines break and bodies react differently. What works brilliantly on one day may leave you in a life threatening situation the next. Stress, illness, exercise, the amount of fat in a food, the type of carbohydrate you ate, the length over which you gave your insulin… are just a few of the factors that can massively change the way your body responds to what you do to try to help it.

And here’s what people don’t appreciate. The longer you have diabetes, the more at risk you are of complications. What does diabetes do? What does it cause? It is the (now potentially just “a”) leading cause of blindness. It is the “most common cause of kidney failure” in the US (source) “About 60% of non-traumatic lower-limb amputations among people aged 20 years or older occur in people with diagnosed diabetes.” with around 73,000 of them due to diabetes in the USA during 2010 alone (source) It causes neuropathy (damages nerves so you can’t feel things, or so that your autonomic nervous system that controls heart rate etc. goes haywire). Diabetes is associated with cardiovascular disease and heart attacks, and deaths due to both of these conditions are 1.7 and 1.8 times higher among diabetics respectively (source). Add into that strokes and whatever else, and suddenly it isn’t so harmless. Insulin is underrated. Pancreases are underrated.

I don’t have any complications due to my diabetes at the moment, other than some changes to my retinas that come and go. I have plenty of other health hiccups, but they developed of their own accord and mostly they scared me more, although they are effected by my diabetes (because it effects pretty much everything). It’s the only health hiccup I’m willing to talk about in detail on here. There’s such a misunderstanding and lack of awareness around it, yet in the diabetes community at least once a week I am sent a story about another child or teenager or some other poor person who died as a result of undiagnosed type 1 diabetes, or diagnosed diabetics who got a stomach bug that caused their diabetes to become out of control, or who slept through low blood sugars and never woke up, or whose blood filled with toxic chemicals that made their brain swell… And there’s such a stigma around it. People think all diabetes is the same, and it isn’t. Type 1 diabetes is not caused by eating too much. Type 2 diabetes generally only causes chronic complications and isn’t associated with the capacity to kill acutely like type 1 does. And it still frustrates me. Because this is what it does. (If you feel like somehow sharing this and helping me raise awareness of the reality of something I only just accepted myself after having it for almost 2 decades then… Please do – unless I went/go to school/uni with you, in that case… Yeah).

And in the early hours of this morning. I realised that this normal, harmless thing wasn’t harmless at all. I took on the role of my beta cells, and I only just realised what a significant and scary job that is. This is the reality that nobody really knows is there.

But I got a grip. After about twenty minutes of pulling myself together and then just crumpling into a sobbing heap all over again, I got up (literally), I paced around the room a little, I waited for the numbness to settle, and I gathered myself back together. And then I curled back up on the bed, and I went to sleep. And I hoped that all my health hiccups would stay happy until morning. And I decided that I’d tidy my room and catch up on work and go and see some of London at Christmas (as I want to).

All to the backdrop of Christmastime.

That’s the point, you fall apart but the world keeps turning. No matter how much I’m given to deal with, time won’t stop to let me deal with it. So what else is there to do other than to switch off and hope that it hurts less in the morning?

By the way, it did (hurt less). In fact, it was forgotten. I guess when things get rough, you just have to keep moving so you’re harder to hit, and hope that life has poor aim.

No way but through.