A Little Too Much

I’d be lying if I told you I was doing anything other than sitting in a hospital bed crying right now. I don’t know how to do this. I am drained and alone and so, so scared. Another IV has been added to the 6 drugs my new PICC line (Pablo) was already juggling over the course of each day, and the clinical director (who gave permission for my procedure to take place) saw me this morning and expects that on Wednesday I will end up having the wound in my chest cut open back on an operating table (and then still maybe two procedures after that). It should be no big deal. Way more minor than the extreme procedure he approved for me to undergo a couple of weeks ago. So I should be able to shrug it off. But I’m scared.

Fear isn’t something I let find a home in me often, and when it does I usually pile denial on top of it and wait for it to dissipate, but this fear is eating me alive. There is more than one health hiccup that could go very wrong here. Three different specialties came to see me today alone (as did an amazing friend who I met at the Bastille gig in May, who travelled all the way from Manchester to London to spend the day distracting my brain and quite honestly made my week). Things are complicated. There are too many things to consider and be worried about and too many thoughts to try and queue and process. So the fear hits all at once in a big jumble that I can’t untangle and streamline and sort because there are too many things to be scared about and all of them are justified. 

Among all of that, I smell that hospital smell and PTSD throws in a flashback or two and pure, raw terror tears through me like wildfire. In its place seeps a fear for my wellbeing, a fear that we aren’t winning this yet despite throwing rather a lot at the situation; a fear that things seem actually to slowly be getting worse after an initial halt in the course of things… and then maybe a sound or a different smell will trigger another flashback, and I’m curled in a ball trembling and sweating and scared like I didn’t think was possible all over again, until the other fear seeps back in. 

And I’d be lying if I wasn’t crying because just now my brain thought about the possibilities of how long this could last and what could occur and said to my body “Hurry up. Please just hurry up. Enough. Too much. Just do it already.” 

I’d be lying if I told you that the fear wasn’t eating me alive, and that there weren’t so many elements to it I didn’t even know which parts of it to focus on to start trying to manage it. 

Being here in itself shakes me to the core, turns my world upside down. Too much has happened to me in hospitals. Mistakes have nearly killed me too many times. Mistakes have resulted in emergency surgeries that went wrong and left me able to feel every cut for a very brief period of time. I have been bullied and belittled and neglected by staff. I have been legally assaulted by a paediatrician. I have been traumatised during hospital stays on children’s wards and in a children’s hospital in ways it is too painful for me to even talk about, and I carry that always. It causes nightmares, flashbacks – great big terrifying obvious things that leave me helpless to my own terror… but it burrows deeper than that, it affects me far more than even I comprehend. It also means my brain finds danger everywhere – in every word or act of concern, in every “I care” or “I want to help you”, in every medical professional, in every hospital, in every element of any thing that helps and heals. Because those are the things that broke me, that hurt me, that killed me inside and left this version of me behind. So I cannot trust these people with my life because people just like them almost took it from me (these people are lovely, but PTSD overrides logic). And it’s like being trapped in my own mind, in this endless cycle of flashbacks and fear because now I am “with it” and well enough to… lose my mind. 

And maybe that on top of the justified fear makes it harder. Maybe reliving the old things so frequently and vividly that you cannot separate them from the present… doesn’t help things. I want everyone’s concern to die away, I don’t want to be having big serious conversations about infections spreading to heart tissue and blood becoming acidic and leukopaenia and all of that. I don’t want to hear doctors say they are concerned. I don’t want to hear about how completely awful the situation could get (worst case scenarios that are actually plausible SUCK). Because I cannot deal with it. There’s no room. I can’t face reality because I cannot cope with it any more. Too much. I can’t handle this fear and I. Can’t. Run from it. I can’t leave this reality. I’m tied to it (literally, I drag 4 IV pumps around with me everywhere… and a peacock that I made from a glove – his name is Pierre and I made him a nest from a bandana which hangs from my drip stand).

It’s like rapid machine gun fire, but I can’t even finish falling before the next bullet hits or the next specialty walks in with some other different plan that my brain can’t handle right now (and also means that whatever the person before them decided now needs to be changed to avoid y’know… a crisis on top of the current disaster). I know this is super pathetic. I know. I keep being told that this situation warrants tears, but I know beneath my feelings that it could be worse and I hate that I am selfish enough to indulge my own emotion. 

All I can think as I sit here breaking is that I honestly have no idea how to go on, and for that very reason I need to stop other people going through stuff like this. I need to help just one person take just one moment like this out of their life. And so it makes me want to raise money for charity more. Because I have to take this away from someone else. I have to. I can’t stand the thought of anyone else buckling in the way I am right now. I don’t know how to handle the thought of someone else feeling like I do right now – it’s too late to save me from these moments (clearly) but it isn’t for someone, somewhere – and I want to help that someone. 

I’m tired. I hurt. After being intubated for my procedure I still choke on everything I try to swallow. This could be a thousand times worse, and physically it’s the kind of thing I can handle, it’s nowhere near the nastiest things I’ve been through, but… A lot is going on. That doesn’t help things. Mentally… I’m lost. This stuff just isn’t stopping. Right now I need a break from my health hiccups and life is just cranking up the dial. I’m in a specialist heart centre but non-heart factors are ruining things. I honestly honestly do not know how to face tomorrow. And I think my eyes may genuinely just be faulty because the tears will not stop falling.

Here comes the nurse with another IV to start. 


Where I’m At

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No way but through.

Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

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.

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. 

Vicious Cycles

I can’t figure out how to start this post, and the more I think about how to start it, the less of a clue I have. So I guess… Here goes nothing (honestly, it’s taken me two hours to write those few words, so don’t expect much from this post).

I don’t want to talk about appointments. I tried for a very long time to elaborate on that point, and I can’t. In yesterday’s appointment I broke down and pathetically said I didn’t know how to do it any more. In today’s appointment… Asdfghjkl. Doesn’t matter. I ended up booking further appointments with each of the healthcare professionals I saw. I do so because I get intimidated and feel forced, and regret it once I’ve left. So I re-booked one for January with this person, because I pretty much refused to come back any sooner. Apparently I just have to get in touch if I feel I need to see her before then. But- Yeah no. Not talking about that sort of stuff. I’m sorry, I tried. I’m done with that, I need a break. It woke up a huge amount of frustration within me and just. No. 

I usually use this blog as a place to let that sort of stuff out and rearrange my thoughts, but I’m (finally) starting to feel things again and I cannot face the emotion that comes along with my thought processes, particularly as I’ve started to go to hospital appointments again, and am feeling completely smothered and overwhelmed by my health. I had a few months where I just couldn’t cope with my health, couldn’t face it, and felt so unsupported that I didn’t see any point in my appointments. Mentally I couldn’t deal with my physical health at all, and my way of dealing with that was to not – to bury my head in the sand and self-destruct because emotionally that felt safer (I mean to be fair, going solo is so much more stressful but I saved my own butt so much better than DrDidn’tCare did). I didn’t choose to re-engage. In order to continue to live, I had to. I need to see my cardiology team about my heart – it’s doing weird and wonderful things. I need to see my urologist because my kidneys are really not functioning as they should (not passing water for a long time, and then passing blood and protein). But I re-engage with one health hiccup and end up with… 4 appointments in two weeks in two different hospitals. And after so long, that’s so overwhelming, it’s way too much. I can’t face the rest. I am not in any different frame of mind. I still don’t know how to handle it, and people making so many appointments so quickly and trying to push things and act like there isn’t a huge mental issue that needs to be addressed around all of my physical health… It’s overwhelming me. It’s going to make me freak out.

In short, reality is closing in and piling multiple layers on top of me that I’m not ready to be buried under yet. So yeah, this blog is normally my place to just let out whatever I need to let out, whatever the real world just doesn’t understand or respond to in a way that is helpful to me… But this blog is also a coping mechanism, and it is whatever I need it to be. Right now, I need it to be a place to hide. Right in this moment, it’s kind of a shelter away from reality. I can separate my blogging self from myself and control what goes down onto this page (is it a page if it’s on a screen?). I never wanted this blog to go on about my health so much, because a lot of people have made me feel like it is something to be ashamed of, something to keep under wraps (hence why here is my only outlet for that stuff) and a lot of people don’t understand. Many times before I’ve tried to stop myself talking about my health here, but it always needs a place to go.

Tomorrow maybe I’ll be able to talk about the appointments. Right now though, my mind kind of collapses and my emotions completely erupt at the thought of trying to words about that. So let’s not.

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This is a picture of the Christmas tree in the clinic waiting room, but I’m including it because it’s the best attempt at a Christmas tree I’ve encountered yet and I didn’t go anywhere in London to see Christmas stuff today.

I went to a lab straight from my appointment. Same Cardiologist Uni Friend met me outside the hospital and we walked to our lab together. It was being run by the most supportive and helpful lecturer I’ve encountered this year about all the missed work and everything, and ironically enough, we were looking at (and preparing our own) slides of a rat pancreas and staining it with antibodies that attached to insulin so we could see which cells were beta cells. Let me tell you as a type 1 diabetic, beta cells are underrated. If you have functioning beta cells, treasure those little guys. Anyway, nobody knew I was back in London really. Uni Pal, WR Uni Friend, and Uni Babe were working together. Suddenly these arms wrapped around me from behind – Uni Pal, and she was telling me she’d recognised my curly hair and it had just made her day to see me there and she was so happy I was back. The three of them were so excited to see me. Uni Babe just wrapped her arms around me and kind of reassuringly rubbed my arms without saying a word. They were so happy to see me. So was Portsmouth Uni Friend. They were surprised. They didn’t take anything personally. I was so overwhelmed by the experience of people talking to me normally that I went all involuntarily mute again for a while.

I got to do what biomedical science students do. And that was kind of… I don’t know, but with my whole degree hanging on a knife edge of uncertainty right now, it was kind of… Appreciated. I thought my brain was halfway back to normal in terms of functioning, but discovered I was wrong – I still couldn’t think. This became apparent when I attempted to science and realised that I had no idea how to science. Completing the lab didn’t improve the situation. At the end, when I went to get my barcode sticker (to put on the cover sheet of my writeup in order to prove it is my own work and I was in the lab session) I a) forgot my name and had to be reminded of it, and b) couldn’t get the sticker off the piece of paper, so the most helpful lecturer of this year decided to help me out and just peel off the sticker for me.

I planned to go somewhere in London and see some Christmas lights or something, but ended up popping into the little mini branch of a supermarket right by my accommodation, and with Same Cardiologist Uni Friend egging me on, I bought food. Like, actual proper food to make an actual proper meal. They didn’t have paella rice or spaghetti, so I got some stuff and made seafood linguine… (I was trying to tempt myself to eat, so I decided to make something I’d always wanted to try but couldn’t afford in restaurants).

Of the 7 friends I’ve encountered today, a few really were not helpful to be around, just because they were far too enthusiastic or energetic or just so clueless/cluelessly optimistic and oblivious to the state I’m in despite numerous explanations. I can’t blame them for not relating, I just don’t want to hear about nude photos and stuff. I suddenly discovered how to feign this complete happiness all over again. It’s this thing I’ve hidden behind for a very long time – wear a smile, act over enthusiastically happy, and you feel a little lighter, people don’t ask questions. This time, that happened (albeit to a lesser extent), but over and over in response to suddenly being thrown into what was just a few minutes of social interaction, my brain was all just end your existence. I’m not sure why, but it feels like the only right thing to do. And I don’t know what the problem is, I just know that’s the solution. There was no emotion behind it though, no sadness to push the thought. Just an alarming thought that kept resurfacing – a little lump of raw longing that bubbled up in my throat.

But I kind of miss them. Not all of them – which sounds bad, because they’re such good friends, but  some of them really are not helpful to my emotional state right now and they have, predictably, stopped messaging as often (most I haven’t heard of for over a week) because when I freak out and withdraw, eventually people get tired of just being there. Uni Pal messaged me to say that seeing me had made her week. That was sweet. At one point she was messaging me every other day just to say she cared and didn’t expect a reply. I didn’t expect that to be maintained. But anyway my point is I want to do Christmas stuff, and I want to try and start hanging out with my friends. Maybe just one at a time, because I think that’s all I can handle. And there are only about 3-4 people whose company isn’t going to break me right now, but I’m trying.

My bedroom is a tip at the moment. Or studio. Or flat. Or whatever it is. My bed has so much stuff on top of the quilt that I have to sleep on top of the covers. The floor is covered in… Everything. I got rid of five bin bags of rubbish this morning and it’s still a complete mess. I’m a neat freak, but when I get in a bad place mentally, my room becomes a tip. That then stresses me out more, which makes me care even less about tidying, which makes things even messier, and so the cycle continues.

I’m stuck in a lot of vicious cycles at the moment, but I’m trying to  turn them into home straights.

Sorry for this post guys, thanks for reading it. Guess I should go back to the start and write an intro now?…

The “Nothing” That Nearly Killed Me

“But you’ve gone through so much worse. This is nothing in comparison to that, right?”

Haha. Hahaha. HahahahahahaNOPE. This thing could kill me within hours. It’s up there with the worst of the things I have and will face. It makes me feel like I’m dying because it’s kinda killing me and if I walked into a hospital right now they’d put me in the resuscitation unit and man the panic stations when they failed to get in an IV line. But I’m like this so often that you think I don’t look sick. You can’t see me right now, but you’re so used to me looking unwell that you think that’s healthy me. 

Today was a day of defeat. It was a day of damage limitation and duvets and letting my dog up onto the sofa he isn’t allowed on because he wouldn’t leave my side and wanted to snuggle. It was a day of a nausea so intense I couldn’t even drink water. It was a day of a splitting headache so severe that it gave me visual disturbances and an inability to stand even the dimmest light present in a darkened room. It was a day where my heart decided that 170bpm was an appropriate rate to beat at while I was curled up half asleep, and my blood pressure was so low that I couldn’t feel a peripheral pulse. It was a day where dizziness had me disorientated and stumbling, and everything spun. And it was a day of acidosis. As if my heart being a poop wasn’t enough of a present for today. My dog knew. He just knew.

I woke up this morning, realised I was seriously unwell, injected intravenously, went to sleep, and attempted the whole process of waking up again a few hours later. I felt slightly less grim, but still knew I was seriously unwell. If I’d have called an ambulance at that stage it would have used blue lights and sirens for the heart rate alone. I was in acidosis. Almost as bad as the other day. I was experiencing symptoms that I don’t usually get until my pH is around 7.1 or below. I had been planning to properly start my uni work today and begin the mammoth task of catching up, but I couldn’t do anything at all. I thought my room was dark but there was still enough brightness in the darkness to hurt my eyes. I grabbed my quilt and my injections and medications that I need in the morning, and made my way downstairs because our living room has thicker curtains which I thought might block out more light. My dog followed. He has refused to leave my side for anything, and if I leave the room he runs after me in a sort of panic. He wakes every few minutes when he’s asleep, lifts his head to look at me, and if he can see me and I am moving or acknowledge his presence, he goes straight back to sleep. If he can’t quite see me or I’m half asleep, he gets up and puts his face right next to mine on the bed. If I still don’t do anything, he nudges me until I move or groan (or even better, tell him he’s a good boy) and then immediately curls up and goes back to sleep. We were home alone for most of the day, but I felt safe. He knows when I’m not well. He turns into my little protector.

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Top left: Human, are you ok? I’m right here. Top middle: You sure you’re ok? You have a pillow over your face. I’m just going to stare at you to make sure you stay alive. Top right: That’s it! I’m going to have to lay on your legs to make sure you’re ok. Technically I’m not on the sofa, I’m on you, so you can’t be cross. Bottom left: You don’t look well. I want to snuggle all the bad stuff away. Let me just… (over about five minutes he crawled up higher and higher until he was laying on my chest with his head tucked right under my chin. Every time he heard a noise he sat on my chest and growled a little into the empty house). Bottom middle: Ok your mum is home, I’ll just lay RIGHT HERE and make sure you’re still ok. I’m not even moving for food. Nope. Bottom right: YOU MOVED ARE YOU OK? Just checking. 

The first thing my mum said when she came home from work to find me curled up on the sofa was “Oh *** you look rough!” At this point it hit home to me how unwell I was. My dog sat right by me, his back to me, letting me stroke him. I at last managed to drink something and ate a tiny amount of food, but my heart was RACING and although I could look at light and stuff again, my head still ached awfully.

“You aren’t really getting much work done, are you?” My mum sounded exasperated and almost irritated/disapproving. I couldn’t be dealing with that. I’ve done some work over the past couple of days, and it isn’t her job to judge me and get on my back about work any more.

“Why haven’t you got a boyfriend?” Was her next question. Because it isn’t a priority right now. Because I don’t need a boyfriend to feel like a person. Because I need to learn to like myself before I can let someone else even think about loving me. Because I can’t love and I can’t trust because of all the things that happened when I was younger. Because right now and for the last few months every spare thought has been eaten up by me trying to figure out what to do to stop myself dying?… I felt like throwing the sofa I was laid on. I felt like she thought I was doing something wrong. I felt insulted.

I slept for most of the day. I woke feeling like I needed to sleep for hours all over again. I couldn’t keep my eyes open, I couldn’t stay awake. I was freezing. I had a long hot bath (I usually shower but there was no way I could stand for so long) while my mum sat in the next room wrapping Christmas presents. We had a chat which mostly involved her asking me the age of people’s kids and us trying to work out if the present she’d bought was appropriate for each child. It was kind of nice.

“Unload the dishwasher before dad gets home.” My mum said to me on the phone. My little brother, WHO ACTUALLY LIVES IN THIS HOUSE, refused to help me. I feel like a guest here, like I don’t belong, yet it’s quite ok for me to be integrated into the family fully when some chores need to be done. I was dizzy. I didn’t care if that meant I broke a plate, I just did as I was told.

My dad got home and wasn’t happy that I had blankets on the sofa. Of course, he couldn’t say anything to me, but I heard him bitching to my mum and to make everybody’s lives easier I dragged myself upstairs, feeling as though I were in the way and like a piece of dirt all over again (I tried to help them with something and was ignored and basically told to buzz off). I realised why I’d been spending all day in my room until this point, but I don’t like being shut away.

My dog and I went back upstairs. I curled up on my bed, so tired that I couldn’t think straight. I don’t do duvet days. I rarely admit defeat. I keep going until/while I’m literally dying (Last week I sat an exam with a pH of at most 7.1, then completed and submitted my coursework and tried to go to the library before going to hospital on foot and by bus, where we discovered my pH was 6.9 and I shouldn’t really have been conscious, let alone able to stand.) I don’t like to bother people and I’m always frightened that I’m just overreacting and people will be annoyed with me for wasting their time. For me to spend a day curled up under my quilt, not even attempting uni work, with my laptop shut down and out of sight and my headphones in another room… I have to be very, very ill.

But that’s difficult for people to comprehend. There’s no blood pouring out of me. I don’t have any gaping wounds or visible deformities. People can relate to the flu or to surgery because they are likely to have experienced one or both, and they understand what surgery involves. They don’t understand things they can’t see. They don’t understand acidosis and tachycardia and migraines (I don’t count migraines among my health hiccups. I don’t get them too often, and although some last an awfully long time and all are debilitating, this one only lasted a few hours thanks to the magic of the tablet I finally managed to ingest. It’s like diabetes – it’s so normal to me I forget to label it a hiccup, yet it brings me to my knees sometimes). When I told my friend I was in acidosis again and my heart was being a poop, she responded to my message about how awful the situation was becoming with

“But you’ve gone through so much worse. This is nothing in comparison to that”

She said I’ve had surgery and surgery is MAJOR and this wasn’t surgery so it couldn’t be anywhere near as bad. It was worse. It could kill me within hours. It should. I shouldn’t be able to fix it outside of hospital but I pump myself full of IVs using unorthodox methods to do so, and drift along with a slightly low pH (around 7.25-7.3) for as many days as I can (which I shouldn’t be able to do, but my superhuman body is so used to this state that it can just about function, and doing hourly injections – not of everything I need, but of one thing that does at least something – I can hold off the fatal levels for a while instead of reaching them within hours as I should do).

She went on reassuring me, saying that if I can bring myself to go to hospital I might not be in there as long and I will be that step closer to getting better. She said that I’ll get better, and we can travel. But that’s the point.

I’m not getting better.

We don’t know how to make me better.

We don’t know how to fix the major health hiccups, how to tame the rebellious organs, how to stop new ones going wrong in unrelated ways.

That’s the point.

People don’t know how to understand that, because in their eyes hospitals fix everything.

She was amazing about my PTSD. She told me I wasn’t stupid for it or whatever anyone else had said to me about it. She said that I was still in there. She said so many amazing things, she said she’ll always be there to talk and she’ll help however she can. She understood that the PTSD isn’t me, and she told me not to call it a monster because it gives it too much power. We named it the snake, because I really hate snakes. She was so helpful about it all. She really, really understood and she made me feel like so much less of a freak about what’s going on inside my skull.

I’m at the stage where I worry about whether I can do enough to allow me to wake up alive tomorrow. I’m at the stage where I don’t know how I will get through tomorrow. I can only try.

No way but through.


“Sail Away With Me”

Today Bob Jr. and I went home. Not in a geographical sense, because geographically home is kind of ambiguous at the moment, but home to memories and feelings and the sense of being me again (stick with it, the second half is slightly less completely awful than the first)

It went like this:

We pull up in the carpark of the yacht club where I learned to sail, where I taught a few little kids to sail, where I won trophies, got drunk for the first time and was carried back to the campsite by the guy who wanted to kiss me but didn’t want to take advantage of my drunken state… This is the place I declared my favourite place on earth, the place where for a week every summer I used to live and race and sail day after day after day and where the rich kids laughed at my supermarket-bought clothes (minutes after saying they liked my top or whatever – the irony) and made me feel substandard everywhere except on that river… This is the place where my sailing coach (who even visited me in hospital) became known as mother duck because his RIB (rigid inflatable boat… I think that’s what it stands for anyways) was frequently followed round by a group of boats in one of his favourite training drills. It is a place where on land people seem to look down on me, but on the water I am at the very least their equal.

It is a place where I used to be good for something. Good at something. A place where, if I can find Mother Duck, I know I will receive a long, long hug. A place where I frequently laughed until my stomach hurt and there were tears in my eyes, where my friend and I used to get bored of racing and would tie the fronts of our boats together and attempt to sail in tandem, much to the fury of her dad. This place is freedom. I smile as I walk onto the pontoon to my dad’s boat waiting at the end of it. I climb aboard and cannot help but smile. Water. Boat. Book. Life.

People I know (and far too many that I don’t, even a couple of the GBR -youth?- squad) are finishing a race in a class of boat that I sail sailed in. People who in wealth and class I come nowhere close to, but to whom in a boat I once became a threat, at one stage able to beat people my age and older over and over again, seemingly unable to use with absolutely no idea how (my theory is that they all overthink it, take it too seriously, forget how to have fun, and try to sail with knowledge instead of just… Feeling what to do. When in a boat, I don’t think about what I’m doing at all, I feel when I need to pull a rope or steer to the left… And this means I have free brain space to allow me to sing and play random little games and just look all around me at the birds and stuff. Seriously, how did I ever win things?). Now only one of them recognises me – this time last year I had virtually no hair, and although a few inches of curls have grown back, I look very different to the girl with the frizzy ponytail that they all used to know. The one girl who recognises me looks confused when she sails past and spots me at the helm of a boat, but waves hello in spite of her disbelief. Her crew-mate, once one of my closest friends, stares blankly.

I have grown up with the yacht I now stand on, and sailed optimists (a.k.a oppies, a teeny little boat), toppers (slightly bigger, much easier to capsize), and then lasers (much faster Olympic class boats which like to spend most of the time upside down if you’re too light for them… Which I am. But I don’t didn’t end up upside down too much somehow). This boat has not forgotten me, and I remember her like an old friend. Because of the fact that I am the only person other than my dad who knows how to sail the thing, I’m left to move us off of the spot where we are tied onto, navigate an awful lot of boats that are under sail (and therefore have right of way), and try not to get stuck in the mud or drift with the tide, all while fighting against the boat’s relentless desire to veer to the left. It doesn’t make me feel important like when I was a little kid (in fact, it makes me sort of embarrassed until I manage to zone out all of my mum’s midwife colleagues). But it makes me feel in control of something.

For weeks, months even, I have been out of control of my life, of my health, no matter how hard I try. And now there is something huge relying on me to steer it and I am doing ok. By myself. I am succeeding where others have failed (one midwife very nearly crashes somehow when she attempts to steer). There are 38 feet of bavaria (yacht) at my fingertips and the 27 year old beast of a boat sighs and moves and creaks in my hands. And nothing goes wrong. I do ok at something, and as a result there is, for once, nothing to criticise (or so I think, keep this particular sentence in mind for a paragraph or two). And everything else is more than ok too because I am home. I am on a river. I am in a boat. And I love her, this boat. I remember being five or six and standing holding this wheel, one of my dad’s friends stood behind me, his hand next to mine.

On the river, I am home. I am a sailor again, albeit now steering a yacht instead of a laser. The sounds, the smells… It’s heaven. This boat does not care about my health or my physical ability and the sailors that cheerfully call hello when we moor up and they race past us have no idea that a week ago I was in an ICU. I’m just another one of them. I am me again, the person who was lost, who lost the ability to do this amazingly freeing thing… Just like that, I am back, I am home. Right here, I am somebody I have not been for years.

My headphones are over my ears. I pause the music occasionally to just drink in the sound of water sloshing against the side of the boat, splashing up as the bow cuts through its surface… I replace the headphones when my mum and all her midwife friends start talking about mentoring university students and other work related things.

My fellow third wheel was busy today, but as a former sailor himself I asked if he wanted to join. Just after we cast off, he realises that he could have actually come along, but by that point this is no longer an option, so we message and I send him pictures from the boat instead. We agree that as we discussed before, we will go out on the boat sometime soon, make a day of it, and go for a sail. We also decide that when both of our bodies allow, we will crew a boat together (as we also said in Norfolk, but that feels a lifetime away now).

He is at the other end of the phone when (technically my step-dad, but the only man I have ever called Dad) who doesn’t have so much as a tenth of a GCSE/ O level in science, decides to judge me and get angry and give me dirty looks as he declares, in front of the only other person on deck (one of the other midwives’ husbands, who unfortunately also has ZERO SCIENTIFIC KNOWLEDGE) that my near death experiences are significantly my fault. He refuses my calm, LOGICAL SCIENTIFIC explanation as to how he is COMPLETELY WRONG (and to be honest, utterly stupid, insensitive, and INFURIATING) and goes on to make me feel humiliated, belittled, stupid and judged. Clearly he genuinely thinks I’m somehow in charge of all my health hiccups, which would explain why he has been super moody with me lately. Fun times. Not.

So like I said, I message my fellow third wheel, who is just… There, through the emotional firework that occurs within me as a result, but then I see a bunch of hovercrafts racing around and our conversation takes a diversion down this route and I move on, because what else is there to do? I give up with my parents, genuinely. I give up trying to be something or someone they want in their house, or something they don’t resent for having health hiccups that ruin everything (their lives, mostly). What did they do to deserve a kid like this? What did I do? Someone please tell me. Because honestly… Yeah, I’m not even going to go there.

There is an amusing turn of events when the boat is nearly crashed, then nearly stuck in the mud, and I am required to rescue the entire situation. This time I do feel like I have the power, because the dependency is suddenly the other way round; but honestly, I just want to dive into the river and tell them all to screw it (also, it is by s 31 degrees. At 6pm. In England. NOPE. A week ago it was 18 degrees in the middle of the day. Can the weather please decide upon a season already? Summer will do nicely, thanks, but a little consistency would be appreciated.)

I am then also required to put the boat back on her mooring and help secure everything away and stuff. Because I’m human, and therefore possess some sort of maturity, I get over my hurt and don’t crash the boat. When we stop on land at the bar so the midwives can all get some hot tea (even though it is 31 degrees!) I am told off for carrying a chair incorrectly. Yes. At the age of 20. I cannot even carry a chair right. Seriously. I very gently nudged my dad’s arm with a very light garden chair as I went to put it down, and apologised profusely, anticipating his reaction… But it is reactions like this which often make me feel useless. The thought process that follows is usually (and in this instance):

SERIOUSLY? I’m 20 and you’re telling me off like a child and refusing to accept my apology? …  Wait, I can’t even carry a chair (or some other minor task, depending on the situation, because they are sticklers for EVERY detail) right… Well I must be a complete failure at life then because life is so much more complicated than carrying a chair. I am such a disappointment. Guys I’m so sorry I turned into me… Wait, this is a little bit immature on your part… No I don’t look upset to try and make you feel bad stop that right… Oh well now I seem to be close to tears. Can you just not? No? Ok well… Just what even is the point of me?

Dry land was as crappy as I remembered it. All the stuff I sailed away from rushed back to meet me. My body was outraged at the heat. Outraged. All my health hiccups HICCUP in response to warm weather. It is ridiculous. Ridiculous. My heart especially is all “low blood pressure and uncontrollable tachycardia heeeyyyy let’s go stay in a coronary care unit where they try and fail to rectify this until the environment around this body cools down and then I’m all – JUST KIDDING GUYS! – because I’m not enough of a COMPLETE POOP already

I did’t want to run away from anything anymore, I wanted to get back on that boat, on any boat, (or in a swimming pool, or run through some woods) and just be free.

Boats will always be heaven on earth for me, a little bubble where I am untouchable and out of reach from the things that wait for me on the shore.

I wanted to race again, I wanted to sail and sail and never stop. I wanted to just sail and let whatever is going to happen happen (last time I sailed a laser I ended up unconscious in the water… Tried again and ended up the same way… And again, and was then banned from sailing). I don’t care about the risks any more. I don’t care about anything other than the escape that boat allowed me today. Sometimes it is easier to run (unfortunately I usually change course and end up doing what is right, not what is easy – but only when the grim reaper forces my hand). In this instance, I just wanted to sail away again.

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“Sail away with me | What will be will be” – David Gray, Sail Away