Dear Universe, I Submit

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

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

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

I submit.

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

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

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

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Alien

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thoughts, anyone?

I Realise Now

On Thursday night I had no idea how to face the minor surgery I was about to have, but reached a point where emotion surrendered to logic and the rest of me surrendered to defeat. I lost myself in the sound of my favourite music, and hoped it would hold “the feels” at bay until I was beyond the point of no return. This plan worked. I sat outside the room full of lights and equipment (and people) in which I was about to have a wound in my chest sliced back open, and it was only then that I again to tremble – maybe with fear, maybe because I was freezing, probably a bit of both. 

The team were lovely, as was the consultant carrying out the procedure who to my surprise despite being the clinical director was not above wheeling a bed. And then I was away with the fairies. Pedro the pacemaker was infected, and also I was a little allergic to him (my immune system pretty much just hated his presence, not that it ever really brought out the big guns and saved my butt). He was removed, along with the (also infected) wire leading into Skippy (my heart) via which the sensible robot and the rebellious organ communicated. It couldn’t have waited. It wouldn’t have got better and neither would I. It saved my heart. 

And then Skippy saved himself. The part of a heart that usually tells it to beat is dead and gone in Skippy – too damaged by the colleague of the consultant who carried out this procedure to function again. So, obviously, Skippy had needed Pedro. But Skippy had also decided that Pedro was a control freak and he refused to listen. There had been teething problems as the two of them fought and Skippy won. Without Pedro pacing over the top of a rhythm which Skippy has not yet worked out how to co-ordinate with my blood pressure, my heart rate still stayed within a normal range (even though my blood pressure has not). They had expected to have to need temporary pacing or something to achieve this (and then wait 10-14 days and take me back to put in another Pedro), but Skippy held his own. 

How? For those of you who know about the anatomy of a heart, my AV node is a BOSS and has stepped up to the job. For those of you who have no idea what that means: another part of my heart has started telling it to beat – not normally its job, but something it is sometimes capable of when the heart is forced to adapt. The resulting rhythm is called a junctional rhythm. Because the heart beat starts from lower down in the heart than it normally should, the impulse that triggers contraction travels backwards through the top half of my heart. This means that a tiny part of my ECG trace will forever be upside down, and that sometimes my ventricles beat before my atria, which makes my blood pressure drop because that isn’t supposed to happen. 

I’m pretty unwell with it – I’m tired and my blood pressure is low, plus I have very frequent palpitations. They put out a crash call earlier because a nursing assistant and I went to meet the consultant who saved my heart’s butt (he wanted me to try and walk and see what happened, and to encourage me gave me a goal of meeting him by the fountain – but there was an emergency so he was busy giving someone else a pacemaker) and on the way back Skippy got confused as to how to maintain my blood pressure and I passed out. I’d been dizzy the entire time I was walking, but hadn’t expected to hit the floor. I was mortified, and soooo many people appeared from everywhere to scrape me up off the floor. My PICC line was unimpressed at being pulled and appeared to have split, and I was frightened it meant I’d have to stay longer and also totally beaten, so I cried. I wanted to go. 

We hope Skippy will stabilise and that this will stop happening, but there is a chance that my AV node may remember that this isn’t its job, get sick of being criticised all the time, and demote itself to its previous position of just passing on the message when something else tells my heart to beat. If that happens, I’ll need another Pedro (when I was high, I made the consultant bring Pedro 1 back to the ward with me in his pocket so I could take a photo before he was last destroyed as infectious waste). 

Apparently while I was high I also said some very nice things about this hospital and told them about my grand plan to raise money for charity (which you don’t know about yet but has since been greatly encouraged by the consultant who removed Pedro). I said many more really weird things, promised everyone chocolates (I did deliver on this promise) and apparently came back to the ward absolutely fascinated by my left hand. 

I guess I’m struggling with the fact that I felt so much more well before Pedro was removed, and that this junctional rhythm kind of has me on my knees. I don’t think my body was anywhere near prepared to deal with a heart rate of 52-54, and when I try to walk around while my heart is at that speed everything goes black. When it’s around 70 or faster (which is probably 50% of the time), it feels like Skippy is a galloping horse because the rest of me isn’t quite used to a junctional rhythm. But the consultant who took Pedro out is hopeful that this is a manageable situation and reluctant to put in anew pacemaker. It could take a few months to stabilise, or it could get worse, but the amazing news is that he’s so hopeful about the situation that we are taking me off all of the IVs tomorrow and they are finally letting me home (they were pretty insistent about one more night and asked me to please not run off – last night I was so desperate I looked up local places to stay within my budget and only didn’t leave because I couldn’t walk). 

This means I can fly to Thailand with my family on Saturday to meet my baby cousin again and see my uncle and aunt and their other children and my granddad. IT ALSO MEANS I GET TO SEE MY DOG. Labrador cuddles will heal all.

I hope sometime soon I feel as well as I did when Pedro was in charge. No more surgeries. No more admissions. I have made the decision that I cannot deal with this emotionally any more and that it is kinder to my mind to let nature do whatever it wishes should things get worse again – it’ll win in the end anyway and I cannot find any way to justify putting myself through this again. It has pushed me to places within myself that made me long for death, cry for it, and cry because I didn’t really want to die, just to escape the situation. This has been so mentally traumatic that I know after I leave it’ll be a long time before I voluntarily admit myself to hospital or enter a hospital ward (at least while conscious). Fear is a dominating thing and mine has been reinforced. I always react to the biggest fear, and right now my fear of being here is greater than my fear of what may happen if I am not. It will take a long time for those tables to turn. 

I have faith in the consultant who took out Pedro, and he has a lot of experience. I have raised my concerns multiple times and he has assured me that this situation is not concerning from a numbers point of view. If anything goes wrong, it’s on their heads, not mine. I’ve questioned, I’ve pointed out, and every part of me hopes these guys are right.

If they aren’t, I hope Skippy at least has the decency to completely stop next time. It’d be kinder. If I was a dog someone would already have helped him along on his way to stopping. 

I felt so well and now there are so many positives but I pass out when I walk around. It feels like two steps forward, one step back. But it’s still the right direction. 

I am beyond caring what happens. I cannot care because if I do I’ll immediately cry. Everyone here says I look so much happier, and it’s simply because I cannot let myself feel anything. The absence of my overwhelming despair is mistaken for happiness. It just means I am hollow, so broken I cannot hold any emotion, so fragile I cannot withstand its weight. I hope it works out, of course I do. But I’m not afraid to die. As long as the awfulness ends… I’ll take it. I can’t do this any more. And if the awfulness isn’t awful enough to kill me, I don’t let it put me in a hospital. 

I react to the biggest fear.

And I’m no longer afraid to die.

This is going to be… a car crash. 

What is the point? It all goes belly up in the end so why not dance in the flames? Feeling like this honestly what is the point? I’ll dance until these flames take all I have. I realise now that there’s no hope – nobody will ever get me back to how I felt with Pedro present. This fire isn’t big enough to warrant the attention of the fire brigade or the use of a fire engine and yet it hurts and… I… I have to throw myself into it and embrace it because it’s part of me now. This unpleasantness is fuelled by my body, comes from within it, and it won’t stop until my body does. I know that now. I know. 

I’ve accepted that fact but… I don’t know how to face it. I am already more ash than human. I feel like one of those charred corpses left after Pompeii.

Trust the fire not the fire brigade” – Nihils, Help Our Souls



Please get a grip Skippy, there’s no more anyone will or can do for you right now. I took you to a Bastille gig. How did we end up here?

I Don’t Know How

I am currently wearing a hospital gown (something I avoid at all costs because it makes me feel like a patient instead of a human being) having consented to the procedure I don’t know how to face. My veins are filled with EVIL IN IV FORM (so soon I’ll feel like death warmed up) and I’m waiting to be called to theatre. The clinical director is going to slice open my chest. Just your casual Thursday afternoon then.

What changed? I don’t know. After my last post I spoke to one of my best friends, and then my mum, and then I broke down to a level that was alarming. Never in my whole life have I cried like I did then. It took over almost like a physical thing and I couldn’t stop. I felt such an intense despair that I didn’t know how to human. But maybe when you sink far enough, you hit the seabed and find your feet again, lower than before but no longer sinking. I put in my headphones and listened because I didn’t know what else to do. Various artists played through my headphones, and the sound was kind of soothing; but then we hit the Bastille section of “perfection in a playlist” and I just… stopped. Everything stopped actually. I stopped melting down and felt the deadness settle in place of the despair. Utterly defeated, totally drained, nothing left to give and no me left in my brain but no longer bursting and breaking under a helpless and alarmed despair. This situation was more manageable, less distressing… and it allowed logic to prevail.

My nurse walked in as I sat there completely drained, and with Bastille still playing, I took a deep breath and (while kind of wincing) I hesitantly told him I’d go ahead with the procedure. Because I want to. Because I need to. I don’t know how to face it, but we all want it to happen. He smiled and gently asked if I’d let him give me EVIL IN IV FORM and in my moment of defeat I also agreed. A doctor walked in to take bloods. I sank inside but hid a headphone in one ear and played Pompeii on repeat. I’m not sure why that haunting song is so powerful, but I’m not going to question its effect on me. It helped. I sank inside. I held back tears, and I clung to those lyrics. This whole situation is an endless cycle, a stagnant disaster. Nothing is changing. We aren’t winning. The lyrics fitted that.

The doctor who came to consent me was not optimistic at all. He seemed to expect them to find the worst case scenario (because that’s the way things look), and explained that the decision to go ahead with this had not been made lightly and without the whole thing taking place ultimately I could end up dead. Luckily logic was still in charge, even though I crumbled inside and my brain tried to curl up and hide and it was far, far too much to deal with. 

He started explaining that they’d had a meeting and a few procudures had been cancelled so they could fit me in. I left my brain switched off, stayed dead inside to stop the tears that welled in my eyes from falling, focussed on the Bastille t-shirt at the end of my bed (it comes with me on every admission because I’ve decided that thing may have magical powers and actually I just love the artwork on it because it’s an awesome parrot design), didn’t let the whole “we may make a hole in your lung or your heart” talk freak me out, and only looked up to sign on a dotted line. 

I’m not doing this for me, I’m doing it for my family and friends and for the people who I may be able to help by being well enough to carry out my plans to raise money for charity. I don’t know how I’m going to do this. I’m terrified. When I wake up I’m going to be in pain all over again and mentally I don’t know how to face the impact that has on my mind. I don’t know how to face putting my life in their hands and being unable to control what they do. 

I don’t know how I’m doing this, I feel the same way as before but it’s suppressed right now. And I just need to get through, for everyone else. 

The situation with my physical health is like a boulder rolling down a hill behind me. It’s gathering speed, it’s going to flatten me. I can’t jump out of the way and my brain’s reaction seems to have been to curl up in a ball and dig a hole in hopes of being less flattened by what is about to happen. But for some reason right now, and I’ve no idea how, it values the people that care about it (and the people it could raise money to help) enough to get up and run for my life, to make efforts to prevent the worst case scenario from occurring. Who knows if we’ll be fast enough? But these doctors are doing their best. They have thrown everything at that boulder to try and smash it, thrown me lifelines that snap as soon as they begin to pull, and after today I may or may not have to have a general anaesthetic in a week or two in which they’ll try to break the boulder again. We’ll know for sure after this little procedure. 

My brain has stopped trying to pedal its way through and abandoned the bike with the slipping chain. It’s running. It’s letting these people fight for it and surrendering itself to the unpleasantness that it knows will leave me mentally spent. It’s running on broken legs, but it’s running.  I don’t know how.

And I don’t need to. I just need to not get caught. One foot in front of the other until the danger passes. And hopefully no more bad news – there’s been too much of that. 

No way but through.

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t know how to do it. Any of it.

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

One Thing Too Many

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

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

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

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

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

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

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

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

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

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

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

Not even sure why I shared this, but hey. 

3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.

GUYS.

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.