“Hold Me In This Wild, Wild World”

Posting hasn’t felt appropriate over the past week. Turn on the news anywhere in the world and you’ll know why. Terrorism is something that has left a raw and ugly mark on many families, including my own. It’s a paralysing wound that gushes with each new act of hatred, but in our family, it is a wound that has not given rise to the same hatred that caused it. Time and time again, this country refuses to breed the hatred that deranged people try to inject into it. It unites against the cruellest acts imaginable, it grieves, it remembers, it never forgets, but it carries on. There are no words for what happened in Manchester. Only tears. But I will say one thing: If you want to see what muslims did in Manchester that night, please turn on the news again and look behind the news reporters. They stand in police uniforms, in paramedic uniforms, they are behind the wheels of taxis offering free rides to anyone and everyone. They are caring for the injured, they are protecting the public, they are comforting parents and children alike. They are among the injured. They are among those healing and helping and protecting. They are us. Some people will generalise an entire culture or religion based upon the acts of a few people, and I have to ask, isn’t that what the terrorists have done to us? I wish people would think on that one, before they started spreading hate.

It feels wrong to talk about me. A couple of people have emailed me multiple times asking me to post an update here, and this is my best attempt. But I want to clarify that the above paragraph is the most important one of this post. I don’t matter. Please realise that. The incredible people of Manchester should have your hearts and thoughts right now.

No words other than “WHY” feel right to me right now, so I’m sorry if I pick the wrong words.

On the night of the Manchester attacks I had been at a concert myself. I queued for 3 and a half hours in 27 degree heat to get a seat 5 rows back from the front in a church. It was a charity gig, and I was there to see Bastille (y’know… the band that produced the sounds that saved the parts of me that medicine couldn’t). The what is the world coming to theme of some of the songs was scarily relevant, although we didn’t know it at the time. Music is this magical thing. Concerts are this magical, uniting experience. To target that… I just can’t. I felt guilty for leaving the gig safely.

I did leave the Bastille gig safely, but I also left it in an ambulance having spent 10 minutes unconscious while Bastille played and my heart (after an afternoon of protesting at the heat) finally decided it couldn’t maintain the way it was beating any more, become exhausted, and had the mother of all tantrums… The paramedics were rather alarmed by my heart tracing, refused to accept I was feeling fine and rushed me to hospital with blue lights, whilst repeatedly telling my friend to get everyone she knew to tweet Bastille and tell them what had happened (I think/hope she didn’t. Not appropriate, given what else happened that night). Stupidly, selfishly, when I got to the hospital, I cried. I was in pain, I’d spent the previous few days unable to even get out of bed, lungs full of froth, head spinning, and the only thing keeping me going had been the thought of that gig. My health had taken a magical experience away from me and even though my friend had gone back in to watch a few more songs I felt awful for wrecking her night (she admitted a couple of days later that she hated me a little bit for her missing it, which is kind of why I’d insisted she went back inside and just called my mum). Nobody told me I was pathetic, they told me to cry. I soon stopped myself. Had no right to.

A few hours later I burst into tears again, because news of Manchester popped up on my phone screen. I read out what had happened and everyone just stopped. We were all just stunned. Sickened. I felt stupid for people fussing over me when that had occurred. I wanted them to leave me alone and somehow help the people in Manchester. I myself wanted to go to Manchester and help (not that I could have, because at that stage I couldn’t stand). We felt so helpless. I felt so stupid. I told them to just leave me alone and let me go because Manchester. They told me it didn’t work that way, that my heart was having a pretty serious issue of its own and I needed to focus on that. But I couldn’t. How could I? How dare I? It brought a lot of memories back, I could relate to what some of the families were going through. My imagination filled in the rest. I wanted to take it away. We all did. Anyone who read that news story wanted to run back in time and take it all away. They were kids. Kids. People having the time of their lives at a gig.

I was, and still am, incredibly, incredibly grateful to be safe. I spent 16 hours in a resuscitation unit with concerned doctors trying and failing to gain control of my heart. A consultant cardiologist appeared several times, looked at the ECG tracing on the screen, told me he wasn’t happy, and eventually stood and gave me an IV drug. And then some more. And then more… Until he finally stopped after giving me 4 times the dosage the other doctor said he usually used for a grown man. My heart sort of partially complied, then decided it had only been joking, and then everything started to go black intermittently. By that stage, I didn’t care about my heart. I felt guilty for becoming unwell at a completely safe and normal gig, and for having the nerve to have felt down about it.

Eventually at some point late on Tuesday I made it to a ward, where I remained attached to an ECG monitor and an IV and several other wires. We tried other heart drugs with very little success. I couldn’t walk more than a few metres before I started passing out. I could barely stay awake. I wanted to leave, I had an exam on the Wednesday morning, but the doctors were too concerned to let me out. So naturally on the morning of my exam, barely able to remain awake for more than a few minutes (and also having gone into – and then being rescued from – acidosis in the early hours of the morning), I disconnected myself from everything, met my mum outside the hospital, and she drove me to the other side of London to sit my exam. Hadn’t revised at all. Couldn’t actually focus well enough to read because I was so spaced out. Hadn’t worked out how I was going to walk to the exam room. Stumbled along leaning against walls, with everything fading to black and my heart desperately trying to keep up with the whole affair.

I was still wearing the clothes I had gone to the gig in, ironically, a t-shirt with a Bastille lyric on it which read This is your heart, can you feel it? I completed 45% of the exam, with black gaps in time making the whole thing very confusing to attempt, and then the blackness overwhelmed me and, realising I was beaten and couldn’t even press the right buttons on the keyboard because I was so out of it, I gave up. I met with my friends, my chest hurting because I’d walked a short way, and as they all went to the pub I got in a cab to the hospital. The doctor had phoned me shortly after I left. I told her I was going back to get my stuff and have the line taken out. I went back to do the whole paperwork thing as well, and then sat outside by the underground station. Two of my friends sat with me and we ate McDonalds. I listened to this man pick up a newspaper and make a racist comment about a particular religion as he read about Manchester, and my heart just broke for the world. What is the point of hate? What did it ever achieve? Why? Just… WHY?

I got distracted a little from my despair at the state of the world (can I just also comment upon the kindness and resilience of the majority of people who reside within it, which has become evident this week).

I had forgotten what it’s like to be unwell with a heart. Properly, properly unwell with a heart. And I haven’t ever been like this. I woke up the next morning and I just couldn’t move. The world was spinning, my pulse was very fast and very weak, I was coughing up froth and I felt like I was breathing in soup – I could hardly breathe. I was laying still in my bed and my body was behaving like I was running a marathon. It was so exhausting I didn’t know how I could keep it up for long at all, and that was a slightly alarming thought. I couldn’t lift my head. I couldn’t lift my arms. I was stuck. My head was pounding, I didn’t have enough breath to talk at first. I felt dizzy and spaced out. Things kept going black and then suddenly someone would press play again.

And that’s when the existential crisis begun. It’s a frightening, exhausting feeling and I just wanted it to end, but I couldn’t find a way to make it go. I didn’t know how to endure it, I just wanted a break. Physically I have been like that most of the time since I came home. Waiting to see my cardiologist. Waiting to hear about what comes next, because apparently his experimental new procedure is responsible for all the new cardiac upset. Mentally, I’ve ended up in a very, very low place. My counsellor video-called me because I was too unwell to get out of bed, and even she was concerned. I just seem to have deflated. I don’t have any energy, and everything takes about five times more energy than normal, and mentally I can’t really find anything to hold on to. I know it is pathetic, but the doctors said it was a normal reaction, and apparently an overdue one. Doesn’t make it right to me. Especially in light of what has happened in society lately.

There are better moments. I can sometimes walk when my heart is having a better moment, but I get very, very breathless and then everything sets off again and I lay propped up and unable to function. I’m unable to go on our family holiday this summer or to the Imagine Dragons concert I was hoping to take my little brother to next week, because my heart cannot deal with heat or standing. It has felt like my heart has taken everything away from me except my pulse. I am utterly empty and yet at the same time unimaginably heavy. I, like so many of us, am in despair for the world. But I am safe. I left the concert in one piece. I came home.

I am broken, but I have no right to be broken. I have no right to pathetically indulge my own weakness. I have no right to long for anything. I am so ashamed for being so awful as to feel those things. I am grateful to be safe.

Whichever faith or god/gods you believe in, please put in a good word for the people of Manchester tonight and for the families whose worlds will never be the same again.

And if you want to get rid of hatred, don’t be like that man walking out of the tube station and spread hatred. It’s already done enough damage, yet it still hasn’t won – proof that it’s a wildly ineffective strategy. You know what will end the hate? The opposite of it. Don’t throw fuel onto this fire. 

Sorry if that just really angered anyone. I was being really pressured to post and I can’t really think straight and I really, really didn’t mean or want to be insensitive. Forgive me.

 

 

(The quote that is the title of this post is a Bastille lyric taken from the song “Warmth” released in September 2016… Don’t want to plagiarise if that’s even a possible thing here, so just to clarify… My brain did not generate those words. They’re relevant right now though, and I can’t think of any others).

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“An Act Of Kindness”

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

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

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

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

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

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

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

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

It all works out in the end, I guess.

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

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

Comfort of… Bastille?

“As the world falls down around us

Give me something to remember

I am holding on

In the back of my mind

For dear life, dear life

Holding on

In the back of my mind

For dear life, dear life

Oh I, Oh I

I am holding on for dear life

Oh I, Oh I

I am holding on for dear life”

Bastille, Comfort of Strangers

Words fail me a little bit at this current moment. When I heard those song lyrics, I stopped dead. Everything melted away, and my brain curled up in those words like a comfort blanket. I had been fracturing, bursting at the seams, suppressing emotion that I couldn’t allow myself to feel but was most definitely there. I was torn. I was on the edge of letting it all go, of falling apart. And then I got a message from a friend asking if I’d heard Bastille’s new song. Immediately, I almost laughed out loud. Whenever I hit a tough time or get bad news or something, Bastille (the band whose music ended my emotional isolation in the back of an ambulance when I was… 16? if intrigued, see this post) seem to drop a new song or a new album.

I searched it online. Hit play. Listened until the chorus played, and this song just… took me. A total calm rose up and engulfed me and had I been alone, I may actually have shouted YES at the top of my voice. It was the same feeling I got when I heard Pompeii for the first time in the back of an ambulance, when I heard Good Grief for the first time as I walked out of a hospital ward after almost dying and being told that waking up everyday was pretty much like playing Russian Roulette… the same as I felt when they dropped a new album a day or two after I’d had surgery and was laying in bed writhing in pain until that haunting voice played  through my headphones and removed me from the world for the entire length of time it took to listen to all those songs.

I’m pretty sure this latest song is written about being in a relationship with another human (I may be way off there), which I most definitely was not, but the beauty about all forms of art is that people are free to interpret that art in any way they want. I have no doubt that this song said something to me that it was never intended to say when it was written. But it sort of woke me up to myself, it gave my brain an ally, it gave me words I could twist and put to something I couldn’t verbalise or even accept before. It was like a “Eureka” moment… It brought all the guards in my brain down and finally let me admit that I am not ok with how things went, I am not “not feeling” all the things I think I should, I had simply, as my counsellor noticed I do often, dissociated myself from the things that hurt too much to go near.

On the surface yes, I can ignore how I feel, I can tell myself I’m not disappointed yet, I can try to ignore the fact that three (wait, how many days ago was Wednesday?) days ago I had heart surgery (and not only did it not work, but I somehow feel worse, and the second part that needs remodelling if we have to attempt again was too close to my phrenic nerve so… asdfghjkl… and I have no idea what to do or where to go and it changes all of my imagined plans because is this all I am now? A tachycardic, fluid retaining, coughing, breathless, swollen, oedematous mess?) but in the back of my mind I am in the middle of a storm, clinging to this tiny shred of something that remains. Hope? Maybe. And I am being battered by emotions (not only from the past few days, not only from my health. There’s a lot hanging around and churning around back there), torn apart, ripped apart, withering, worn out, exhausted, beaten, probably ready to throw in the towel and walk to the Grim Reaper with open arms. In the back of my mind, in the part I ignore, there is a battle, and I am holding on for dear life. Paralysed by it all, completely lost, completely terrified, and just clinging to anything. That anything, right now, is this teeny, tiny hope that there is something that can still be done. And I didn’t realise that, couldn’t accept that, couldn’t work out why I wasn’t entirely happy and felt tense and bothered (or even admit that I was any of those things)… until I heard those lyrics and my great big deluded, ignorant conscious mind turned around and went, “oh yeah.”

And then… click. I am disappointed. I am falling apart. I’m devastated. I’m terrified. I’m wondering if I will ever be able to have a job, what will happen about the final year of my degree. Will I ever be able to go for a walk again? In the back of my mind I am still feeling all of the things I refuse to let myself acknowledge, and they have been burning slowly, like a fire. Those flames have silently eaten away at all the foundations that held me up. And the thing is, before I can rebuild, I need to crumble. Just demolish the wreck that is left and build something new to take its place, before the rot spreads. That’s kind of how I work. But I’m really great at pretending to everyone, including myself, that I am fine.

And then along comes a song, written by people who I never have or will meet, about a situation I probably can’t relate to at all… And it says all that needs to be said. Enough for me to stop hiding from myself, to let down the barriers, to accept what I am trying to shield myself from and have in doing so let silently destroy me. Weird. Awesome… Bastille.

Medicine saved my body. Music saves my soul. In ways that nobody and nothing else can. (Hey, it moved me enough to post twice in a few hours rather than twice in one month). It kind of brought me… Home.

I was so lost, and I didn’t even know where to turn or what to do or how I felt or what to reach out for, I was just crumbling and trying to pretend I wasn’t. And a song I’d never heard before just shut me down. Totally. Shut all of that. Down. No idea how long for.

This is why I never go anywhere without headphones.

 

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

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

How am I gonna be an optimist about this?”

Bastille, Pompeii 

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

I wanna feel human again

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

I wanna feel human again

Human again”

Kodaline, Human Again 

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

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

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

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

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

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

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

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

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

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

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

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

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

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

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

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

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

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

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

Just In Case

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A new beginning or an end.

I’m not fussy any more.

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

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

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. 

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. 

The Places I’ve Been (Part 2) a.k.a “More Word Turd”

In yesterday’s post, I confessed that I had no more to offer than some highly emotional word turd taken from the notes section of my phone. I am afraid today is no different, and the next few posts won’t be either. Unfortunately I have been struggling a lot with my physical health as well as my mood, and so, so much was left unsaid. Unless I capture the raw thought, there is no point in even attempting to find words because out of the moment I cannot find the right ones. For example, among all this, my next door neighbour was a constant. She was like an extra mother, a life coach, and we have been walking the dogs together whenever we can and if not, just hanging out. Among all this, personal stuff happened. In fact, a lot of extra stuff happened. I got a lot worse than these words show – so bad that I saw no point in anything, least of all trying to capture the thoughts so I could make sense of them for myself later.

So here it is. Another word turd. I was terrified to post yesterday, for reasons I sort of possibly explained, but the comments I got in reaction to that post weren’t what I expected at all, and I sincerely thank the people who left them, because they gave me the oomph I needed to post this today.

12/01

“On urgent list for surgery, sending his secretary over to scheduling to see when they can fit me in.”

It snowed for the first time in a long time, and settled here in Kent, but not really in London. Everything looked beautiful. My mum left me to sleep through dinner.

“Mum so helpful and friendly when I’m normal person ill. She can relate to that, sympathise with it.”

“Almost refreshing to be unwell with something that doesn’t have the power to kill me. But me getting normal people unwell is usually disastrous, because it makes all my health hiccups hiccup, putting me into the sort of state that does have the power to kill me. Every time I get an infection I end up in hospital, usually ICU, because I almost died again.”

“Mum insists on doing everything for me. She went out and bought a whole bag of extravagant foods and stuff that I used to really like, in order to tempt me to eat something. Won’t let me get anything for myself, left me to sleep through dinner. Told me to sleep, got me loads of stuff, waiting on me hand and foot… and this (“illness”) is genuinely nothing at all.” I felt grim but I wasn’t dying.

“That moment when you’re meant to do three separate graphs for your coursework and you’ve done it all on one graph with three labelled lines, and its the first bit of work you’ve done while having a breakdown and now you know you can’t even follow an instruction right (this was followed by a series of upside down smiley faces and then a crying face, because I had given in the coursework days early)

I am a failure

I’m doing uni but not well

[My next door neighbour] has been praising me all week saying she’s so impressed (she took me to and from the train station a lot and walked the dogs with me most days)

Today Mum said I did well as she didn’t think I would do it and get through the week and my heart isn’t there and stuff so apparently just submitting anything is enough.” Only it isn’t.

13/01

“So I got this message saying I had an appointment at [specialist hospital in London that deals with hearts including mine]. Thought oh good I’ll get to discuss the surgery with [Dr (let’s go with cardiologist because I’ve forgotten what I refer to him as usually)]. Then get a letter saying the 20th is my pre-operative assessment. Then below it had an admission date for surgery in the brand new building that looks like a hotel. At 7am… On the 31st of January. Couldn’t have been better timed; have a lab due the Friday before and then nothing assessed until the Friday after. Caught me off-guard though. I knew they were rushing everything forward but this letter was sent days before they could arrange any of that. Haven’t even seen him. Don’t even know what they are doing or why or if I will have a general anaesthetic or anything. I fear the unknown because I can’t prepare for it, so I got stressed I …”

“Haven’t done anything today. Woke up at 7. Came downstairs and started typing some lecture notes, fell asleep.” Basically my throat was agony and tasted of blood, and what started as a tickle had turned into a pain that spread right down into my chest. The pain made my heart go NUTS. “Heart very fast, chest pain from heart but this morning couldn’t breathe because it felt like something sat on my chest. Hurt too much to cough. Slept all morning dosed up on opiates. Watched Elementary while [my dog] laid on top of me and snuggled under my chin (he’s a 31kg labrador) which made breathing even harder. I can’t eat, I’m knackered, and all I’ve done is sleep and I ache everywhere… and that’s refreshing because that can’t kill me. It feels nowhere near as awful as my usual version of unwell. But it triggers events that will put me there. So I’m just letting my body do what it wants to: shut down and sleep and sleep and ache and sleep. Freezing one minute and melting the next. Dizzy if I even attempt to sit up. Heart way too fast. It’s annoyed. Deep joy.”

14/01

“You look the same”

“I’m not” – Taboo, BBC

“I’m terrified I might die on an operating table and yet my desperation hopes that will happen. A natural response to my fear of dying seems to be to long for death.

Now have a chest infection. It hurts.”

I think this was the day that along with the usual pink froth (caused by my heart letting fluid back up in my lungs) I started coughing fresh blood.

15/01

I compiled a list of evidence as it occurred to prove that someone in this household has an aggression/anger problem that I refuse to delude myself into thinking doesn’t exist like everyone else does. Happiness is not pretending you’re happy. Ok isn’t just pretending everything is ok. There’s a clear issue we’ve addressed so many times and suddenly we’re all acting like no, things are perfect. Pfffft.

The roads we walk have demons beneath and yours have been waiting a very long time” – Benedict Cumberbatch, Sherlock, BBC

This isn’t torture this is vivisection” – Sherlock, BBC  (There was also a part in this episode – the final one of this series – where they used the word soldiers in some awesome way that it would take me forever to quote).

16/01

“Today I really can’t breathe. Was feeling better yesterday but I woke up today feeling rough. Went to uni, mum drove me there, gave in my coursework. Went to lecture. Seeing people was really not good for me I just couldn’t cope with it. Lecturer didn’t show up so went home. Slept from 2pm until dinner. [My dog] curled up on me. Coughing a lot more today. No energy to do anything. Dizzy. Worried they might cancel my surgery.

Mum and I stopped on way to uni, she bought me McDonalds. We laughed as she ate FIRE (or as the menu called it, a piri piri chicken wrap). It was nice.”

17/01

“Was kept up all night by shooting electric shock pains all over my body, mostly left side, legs, left shoulder. Kept having witches and spasms. Happens sometimes, but my body really went for it last night.”

“Got my copy of Carve The Mark by Veronica Roth

“Things I suddenly cannot deal with

  • Self pity
  • Humans
  • Uni”

“I do not have the energy or the substance to throw myself onto the flames of someone else’s self pit. I am irritated that they have once again found their way to my doorstep, because their owner has no intention of fighting fire with fire – they hare happy to walk up to the raging inferno/ burning building of myself and ask me to use what limited stuff is left in my fire extinguisher to put out their tiny little puff of cigarette smoke. And then they drive themselves home in a fully functioning fire engine and leave me. That’s how I feel. Like everyone drives up to me in free engines, smiles in my face as I burn, asks me to put out their own teeny tiny trivial first world problem fires, and then drive off in their fire engines to answer the calls of tinier fires in the homes of people they’ve never even met.”

At this stage my friends were freaking out over the absence of a lecturer they all moan about constantly and trying to arrange a leaving party for him or bake him a cake and hoping he was alright and asking if it was weird to offer him any support they could offer. These are my friends. Who didn’t notice I’d moved out of London and also hadn’t been in lectures for an entire week. This told me a lot about myself, when it meant nothing at all. The irony was brilliant. A couple of my friends were annoyed about it on my behalf, which then made me pull this meaning from it all. I wish it had never been planted in my mind. I wish they’d left it alone.

“Nobody noticed my absence. Nobody would miss me if I left. Right now. And I don’t know where it came from because I thought it was leaving. I had my dog and I did revision notes. No work, but revision notes. I always think I’m not clever enough to be at uni. I don’t feel it. I feel like all the work is a mountain and I’m so far behind and so scared that the uni’s solution will be for me to drop out until my health improves (so forever then, because it won’t) that I won’t tell them. Little things, like people being dramatic about trivial little issues are too much, and I don’t want to go back. I was crushed by this emotion and I spent the last hour trying not to cry. Everything I try to do spirals into this big mess of thought and failure. My parents are really pushing me to go to uni tomorrow and I’m nowhere near well enough to do the commute.” Then I wrote about some uni crap,

“I’m angry.

I’m angry at the world all of a sudden.”

“I’m so disorganised I don’t know anything people ask me if I have a lab and I used to know these things and now my friends are just telling me when I have then except now only one person because nobody cares I can’t do it oh no help I’m going to fail.”

19/01

“Already knew my heart surgery is on the 31st. Got a phone call from surgeon’s secretary about removing growth and underlying cartilage. Says 8th of February. I have a PBL (problem based learning tutorial) session at the medical school then so had to cancel that date. I said that was too close to my other surgery because I didn’t want a lecture about putting my health before uni. She was all the 8th of March? The day before my 21st birthday. I was going to relent and go for it, and I said yes, but then my mum was all it’s the day before your birthday you don’t want to ruin that (been there, done that, got the t-shirt and the opiates and the birthday spent in a world of pain). I asked if there were any other times he would do it and she said no I couldn’t wait any longer than that so we went round and round in circles until she was all after that the earliest it could be done wouldn’t be until as far as the 22nd. That would be two months between first showing anyone the growth, and having the thing removed. The NHS waiting list after they decide you need the surgery (not from the initial consultation) is meant to be 18 weeks. Erm. What. Cedric, what are you?” (yes, I named the tumour Cedric. It helps me tell myself he’s harmless because Cedric sounds like a harmless sort of name – please do not now send me a list of serial killers called Cedric to prove how illogical/ incorrect I am).

I just got completely overwhelmed because I worried about leaving Cedric so long and I was still thinking about the other surgery

“Me: I don’t care I don’t want to do anything any more,

Mum: You think I do either?! *walks out of room in frustration*

I am a dick.”

“I am so done. With all of it.

I’ve thrown myself into uni work but there’s no passion in it. I tried to write a blog post and almost cried in the end because my words are so wrong and people think they understand but they don’t. Even people who’ve been through every single event of my life wouldn’t understand, because they would understand and experience it from a different viewpoint.

What I want/need to do is quit uni. But all my parents care about is me going to uni, never mind how bad it is for any form of my health. I want to focus on my writing.

I want to move to Canada

Looking at my dog and working today with him sleeping in my lap and across my legs as I typed notes, I wondered how I ever managed to be apart from him.

Only one person has messaged me since Monday. Good to know where I stand.”

“I don’t want this surgery any more. Any of it. He [cardiologist] has made such a mess about it and put so much extra stress around it with the not knowing ANYTHING ABOUT WHAT OR WHY THEY ARE DOING TO MY BODY… I like to have a plan and know what’s going to happen and what they want to do and why and if there are other options. I like to feel in control and like it is a choice and he took that away. All of it. He doesn’t even know and he didn’t even mean to but he has.”

“Nobody has even asked me if I want to go ahead with the heart surgery. I haven’t given consent. I feel like I don’t a have a choice. It’s majorly triggering my PTSD (which was triggered by horrific experiences in paediatric wards when I was younger).”

“He had to make a five minute phone call. Just when you think you actually matter to one of them, they remind you that you’re just a hospital number in their appointment list. No thought about how the person might feel or what a big deal it is to them; I know he’s thinking about my life but is he thinking about it for me or him? Sometimes I wonder. I let my guard down. I guess I’m more annoyed at myself actually.” Basically he was the one doctor who seemed to care about me as a human. He always remembered and discussed uni and everything, and he seemed like he might be a good guy. And he was just like the others as soon as he did that, because my PTSD made me relive things and the fresh fear convinced me he was just like them, that I was going to feel every snip of a surgery or be screamed at or assaulted or… Stuff.

“Why do doctors even have so much power? They’re human, they’re flawed, and yet even when they are students they think they are above everyone. Self importance ruins people.”

“I seem to be unable to do anything other than uni. Which would be great… Except I have mostly done last semester’s work, rewriting notes from lectures I actually attended last semester (so… Hardly any) or even staying up to date or attending this semester’s lectures. I’ve started revising, but right after I’ve written up the notes. It started because I was so in love with immunology that I didn’t want to work on anything else.

And y’know… I’m only focussing on the modules I like. Which means they are the modules I could do in my sleep because they interest me so I remember: Immunology (I’ve only been to two lectures), molecular bio (only four lectures of that) and physiology because that’s cardiac and respiratory and THAT IS MY JAM. I am a cardiac nerd.”

 

Aaaand flush.

The Places I’ve Been (Part 1) a.k.a. “word turd”

I haven’t posted for a while (my apologies for stating the obvious). There are multiple reasons for this. I’ve been through a lot. Mostly inside of my head (which is something I’m only just learning to partially discuss through the fog of my own shame about it), but also, I became unwell in the way that healthy people become unwell, which was refreshing but also… Upsetting for other health hiccups. I have given up on social media, because it wasn’t a helpful place for me and I realised I existed perfectly fine without it, so I haven’t viewed my social media profile (yes, I only have the one and I’m a 20 year old, shock horror) in over a week. I also began to question the blogging environment, as going through a difficult time this was not only something I couldn’t cope with, but something I realised was not helpful at me at all – in fact, lately, it had been un-helping.

I tried to post, and I couldn’t. I couldn’t find the words, just like I can’t now (I have visions of having 0 followers at the end of this post I’m that certain this is going to be word turd… I may have to rename this blog word turd. It’d be more accurate and it amuses me). They were wrong, they didn’t sound like me. I got frustrated at myself and I almost cried (note: I don’t do that easily) and then I started to almost panic about my lack of ability to communicate, knowing people would take everything to be exactly as I made it sound. All of my posts had been like that, and a lot of people were telling me they understood, and providing examples of their own life. In reality those people can relate to one area of my life, but I do not share all on here, and even an individual who knows me well was making assumptions based upon words that I felt just couldn’t hit the nail on the head, and didn’t show the rest of the iceberg beneath. That made me feel alien. It made me feel like I would never be understood, and it was entirely my own fault. Those words don’t take into account the rest of the stuff I’m trying to deal with. I felt pressure to get those words right, because that seemed fair.

So after a few days of freaking out if I even thought about writing anything, I tried to post again, and read a few posts from bloggers who followed this blog. And I found chunks of my blog posts lifted and used with no mention of my blog. I found the format of a couple of my blog posts used by other people, and hey, I don’t have claim to a style of writing (and that isn’t what bugged me, sharing is cool, it was the lack of a “this idea/ exact paragraph originated here” that somehow did, in that moment), but I have been feeling very used in many areas of my life (because I have been) and it was salt in a raw wound. I kind of felt… Violated, in a weird way. And worthless. So that was it. I couldn’t. I was in a very, very bad place staring through a mist that made everything else seem equally bad, and I gave up on blogging. I decided my words didn’t matter (because events that I can’t mention on here made me feel like every thought and memory I have ever had was wrong, and I didn’t understand why we had to pretend everything was fine).

So here is a format of post that I like. I like it because it’s raw. It’s as I felt it. Here is the notes section of my phone, from the 8th-11th of January. For the indefinite future, my posts will probably be solidly based around these. I can’t think any more than that,  and these words aren’t me trying to explain thoughts – they are just pure, raw thought. As it happened. Mostly while I was sitting on a train or curled up under a blanket and my chocolate Labrador. I wrote it down to try and capture it for myself, to try and process it. There’s a lot I chose not to share, because right now, here doesn’t feel like a safe place for me to share. I’m suddenly super conscious that people can read this, and take my words and post them as their own. And in doing that, they take pieces of who I am and masquerade them as their own. It took me a long time to write anything here, to want or be able to share anything here. It still feels unpleasant. It feels inherently wrong. But then again, so do I, right now.

Warning: This post is very, very long (because I apparently had a lot of thoughts on the 8th – 11th of this month) and these words are like grains of salt – if you have any raw wounds in your mind, they are very likely to find them and burn like hell (my way of saying, trigger warning, because I’m bored of those two words).

8/01

“Dad: If you were a bit nicer I might say I’d give you a lift but you make me not want to

Mum: Why don’t you ask for help, why don’t you ask people for stuff?

Me: because I don’t want to inconvenience anybody

Dad: Yes you do, you inconvenience people all the time. You’re inconveniencing us now

And I instantly just covered my face and broke down in tears and apologised and said I don’t mean to, and he said I was being silly and told me not to leave the room and I couldn’t even, I was just destroying myself. When you feel like the world would better off without you and you ate a giant inconvenience. That tops it. (I’m not putting what I wrote next).”

“Mum: are you awake?

Me: *groans*

Mum: Come on, wake up, you have to do your jab (injection). Don’t go back to sleep! Sit up! Look at the state of this room. It doesn’t need to be like this.

Me: *says some useless inadequate string of words that nowhere near explains that I hate living in this mess and don’t want it to be a mess, but look at it and don’t see any way to fix it and no solution and melt down so just add to the mess too because I am a mess too and nothing matters*

Mum: I know you don’t care about anything but how could you let it get like this after al that time we… I can’t! I can’t even talk about it! Do whatever you need to do (as she walks off)

What those words and her disproportionate upset over a room said to her brain: The state of your room matters more to me than you. I think you’re being pathetic. I think you deliberately let your room become a mess. I’m taking it personally. I care more about the time I spent in here with you than I do about you. this matters more to me than your mental state, which I am willing to make worse to aid my own, because you don’t think about me. You hate me, I can’t stand to talk to you any more. I can’t stand to look at you. I give up caring about this room. Go it alone. You hurt me. Always. He was right, you ARE an inconvenience. I can’t cope with YOU.

What happens in my imagination: I cut deep and grit my teeth through the pain and dip my fingers in the blood and write it in tiny letters on my wall: I’m sorry. Because maybe she’ll understand how much I mean if it is written in my dying blood. And then I die. I take an entire row of tablets and then I die. I die a thousand deaths in every way I can think of, and I give up.

I can’t do this to them. I can’t stay here.”

“Go on social media and see these INCREDIBLE drawings like… wow. Someone on our course has done them and started their own company printing them on t-shirts and postcards, and that’s something I tried and failed to do and I now realise that was stupid because my drawings are nowhere near as exquisite and I realise how stupid and naïve I was to try. And suddenly art isn’t my thing any more. Just make it stop. I want to go. I am inadequate in every way.” See how it twists things?

“I took a permanent marker and I wrote their words on my thigh. They hurt me so much emotionally it seemed illogical that they leave no actual mark on me. I learned from them. I did not want to forget what scum I am because I don’t deserve that, so I wrote their words on my legs. Word for word. And they will say I twisted the meaning, they will say they didn’t mean them (actually they won’t say any more) they will get angry that I clung to those letters that flew from their mouths and they will say I took it out of context:

Do you have any idea what you’re PRESENCE here is doing?

You inconvenience people all the time, you’re inconveniencing us now

My mood in the last week has done this   \    because of you

Having you around makes our family difficult

You’re taking the rest of us down with you

I am vile. I don’t deserve to forget that hurt. I am poison. And now every time I look down I will be reminded, I will carry those words beneath my clothes.

I had visions of a mortuary worker giving me a final wash and finding written on the other thigh I care about you all so much. You are finally free of me. I can only apologise it took so long.

They say they don’t want me to [end it all] and then they say words like those with such hurt in their voices that I know what I must do. And I sobbed then. Because I don’t want to do it. I don’t want to die. ButI care enough to do anything for my family. Enough to kill myself to set them free. Enough to put their need above my own life. I am sorry. Words cannot describe how sorry. And I can’t talk to them because it just turns to shouting.” Those words on my thigh were spoken by my parents.

“Me: Would you be happier if I left?

Bro: Some of the time but not all of the time

Me: Why?

Bro: Because I’d miss you.

Me: But you’d be happier if I wasn’t here?

Bro: No. Where would you go anyway?

Me: Doesn’t matter (I don’t want him to know I’m talking about ending my life) would  you be happier without me here?

Bro: No. Leaving wouldn’t make anybody happier.

Me: It would make everybody that isn’t you happier

Bro: How would it?

I tell him I inconvenience people all the time and having me here makes our family difficult, that I was asked if I had any idea what my presence here is doing.

Bro: Who said that? Dad?

Me: Mum

Bro: You don’t need to leave, where would you go?

Me: It doesn’t matter. Would you be happier? Do I need to go?

Bro: No.

And that is how my 14 year old brother just saved my life while making a salt and vinegar crisp sandwich at 11pm.

I’ve gone downstairs to watch TV because I don’t deserve to sleep. All my mum cares about is uni and my room, and I have to give her that. I have to give her that because I can’t give her a daughter that fills her with love and makes her happy by being there, or even one she wants to be around. I would kill myself for her. I almost did. This isn’t so different. I need to punish myself, I deserve to suffer. I will not sleep. […] I was going to start uni work but I can’t. I tried. I picked up the notebook. I can’t brain. I can’t focus. I was going to tidy my room but it overwhelms me, I don’t know how or where to start. But I have caused so much hurt, and I don’t want to cut myself or anything, but I will use exercise as a punishment – not running, not the kind that brings relief or upsets my heat, but the kind that hurts. Until failure. I will not stop until I cannot even even.”

09/01

I walked my dog with my next door neighbour and her puppy. And I talked to her little. And she got it. She told me all about her own experiences with feelings like mine. She told me it never leaves. But she understood. She helped me. She told me that being alone didn’t help. I spent that day in her house with her. She cleared a space in their office and I sat and started my coursework. I got almost all of it done. I was more productive in those two hours, with her constantly motivating me and pulling motivation from where I could find none. And she swore she would support me, and that I should do my work round there with her, because she loved having the company. The things she shared were too personal for me to share. The relief I felt could not be put into words. The things she did for me then, and since, are above and beyond. She has driven me to the train station and picked me up, walked with me a lot, messaged me while I’m at uni and at home to check up on me… She’s like another mum to me now.

That night I watched Sherlock. And Benedict Cumberbatch’s lines spoke to me. A lot.

“Death is something that happens to everyone else. Your life is not your own, leave it alone.”

“It’s the safest place to hide – plain sight”

“In saving my life she concurred a value on it. It is a currency I do not know how to spend” – Benedict Cumberbatch, Sherlock, BBC

The last one was particularly haunting and scarily accurate, given the amount of times doctors have saved my life in the last year alone. And I honestly cannot justify those acts, the fact that I took up an ICU bed that was needed, and someone probably died because the people who could save them were making sure I didn’t.

“Bro: *Pulls me into a hug* Where were you going to go (yesterday)?

Me: Heaven

Bro: Seriously? *doesn’t let go. Squeezes harder. Keeps hugging me. For ages*

Me: Yeah. And then you told me not to go so I didn’t.

No words necessary.”

It seems to me like you’ve gone off the rails. And we just need to get you going again. I will support you in whatever way I can and as much as I can – my next door neighbour as she drove me to the train station to go to uni.

For the whole of my first year I was determined to go to uni even when in no fit state to, and people were trying to drag me away from it but I shook them off and tore away and carried on with lumps of who I was still in their grasp: missing, failing, flailing, dying inside and outside for the sake of a degree.

Now those same people are pushing me, and that same mind is kicking and screaming and grabbing onto anything and… Terrified.

Going to uni I went past places I know so well. It calmed the panic. But I was freaking out like I was going to a hospital appointment at the thought of uni. My next door neighbour messaged me to coach me through it. Uni pal messaged me the whole way too. She was beyond amazing. Beyond.”

“London is no longer mine.

Mile end feels foreign to me. This busy world carries on around me and I feel disconnected from it. I feel outside of it.”

“Mum: *walks into my room when I’ve just got out of the shower* What’s that on your leg?

Me: What?

Mum: Words?

And then as my brain is all ASDFGHJKL you weren’t meant to see that that’s why I wrote it there, she was all

Mum: Is it for if you… do something? (meaning take my own life)

Me: *shakes head*

Mum: Is it in case something happens to you?

Me: *shakes head*

Mum: Is it medial information?

Me: *shakes head*

Mum: What is it”

“I was walking through this train station and I walked faster than I would ever normally walk. My muscles hurt and my heart grumbled and I didn’t care. I don’t care. I walked up the stairs in one go and I pushed myself to walk as fast as I could and decided pain wouldn’t stop me, nothing would stop me; not exhaustion, nothing. I am not listening to my body until I fall down.”

“Sat in the bag rack on the train home (FYI: NOT designed for comfort, or for humans to sit in) Dinner straight away. Heart hurts which forced me to sit. Falling asleep on way to uni then in lectures.”

11/01

The day I discovered, and fell in love with the subject of immunology and re-thought my entire life plan as a result.

“Some day I will go for a five mile run before this commute.”

“I want to hurt. I won’t induce the pain, but I welcome it. Because I deserve it. I want the constant reminder that I am alive and I can still feel because pain is unpleasant but pain is a feeling. I don’t enjoy it, but I ate myself so much that I am satisfied by its presence because I deserve it, it feels fair.

My heart hurst so often that I am almost concerned when I don’t have chest pain because I wonder (illogically) if my heart is about to stop or something. The chest pain recently is almost constant, it is induced by all levels of activity, accompanied by tachycardia and usually a bit of arrhythmia, which gives me cramp and lactic acid buildup in any muscle I’m using (usually legs) and the pain becomes quite overwhelming. That should stop me, but now I ignore it, push through it. It tells me I am defying. It tells me I am doing something the entire universe doesn’t want me to do. It is a rebellion against myself, against something that will not work with me. But… It isn’t even that. It’s a lack of concern for anything and everything, the same lack of concern that made me just step straight out into Mile End Road (a very busy main road) today and nearly get hit by a van. I walk everywhere as fast as I can because I just want to be on time for uni  or have this overwhelming desire to get out of London as fast as possible and I don’t listen to the thing that tells me no. I go at a pace far greater than I usually would, and it hurts, and sometimes my muscles are so underfeed they won’t really move but I won’t stop even then, not until the ground rushes to meet me. And I don’t care any more. I’m terrified of death recently and yet I’m pushing it. I’m being an idiot. And I know it’s stupid but I don’t CARE. And I want to care. I know I should. But I value myself so little that I can’t. I can’t. I am writing this while on a train, but I am off the rails. Some days I stop taking one medication or another, not consciously, but by accident. Today was my heart meds. Didn’t think there’s be a difference and then I got out of breath just walking to the train and coughed pink froth and realised it helps at least a little. I don’t even understand it. I want to try but trying is so difficult. SO difficult.

I’ve fallen in love with immunology. Like. IN LOVE. New favourite module of all time ever.”

“Got in and walked the dog. Came over dizzy while shopping with (brother). When I got in Mum said I looked pale and told me I’d overdone it. Went to eat dinner, came over SO dizzy. My stomach was HUGE. Could hardly walk (dizzy isn’t even right, nor is light headed. It wasn’t fun though). I was zig zagging all over the place. Mum told me off exclaiming that I was always ill. Wanted to shower as I was freezing, ended up just crawling into bed. Messaged [Uni Pal]. Slept. Couldn’t stay awake. Woke up and couldn’t breathe, it felt like soup instead of air. Coughed a lot. Really struggling to breathe now. Made it downstairs at 10pm to try and work because Mum wanted me to work. Heart thundering away at an alarming speed. Wheezing and stuff. Nearly not enough breath to talk. Last time I felt this bad I was in a Cardiac ICU.

I don’t think I can deal with being around so many people [three friends].

Was weird to be walking the dog two hours after being in London for a lecture. Nice. Sun setting over the valley spilled out before us. Let my (very arthritic) dog run attempt to run. He now growls at any dog that comes anywhere near me (overprotective much?!) he had so much energy and was so disobedient that I had to anchor myself to a tree to prevent him chasing a dog away.

At least I got a seat after 1 stop on the train home today.

Mum told me not to work and to just go to bad. I’ve been to lectures in far worse states than this.”

And that’s the completely all over the place nature of my thoughts. Some of it. There. Apologies for this sorry excuse for a post.

 

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.