There’s someone I want you to meet…

If you’ve followed this blog for a while, you’ll know that my dog (an almost 13 year old Chocolate Labrador) has been my furry rock through all the awfulness – health wise and in my personal life –  I’ve faced (most of which hasn’t been mentioned on this blog). You may also know that I have for a long while hoped to someday get a service dog, not only for my physical health problems and PTSD, but because of the support and responsibility it would provide that might give me a reason to hold on. My life is falling apart at the minute. I’ve bounced in an out of hospital, had more heart surgery last month after spending 3 weeks in a heart centre (and going into arrhythmia, passing out, sustaining a severe concussion, and ending up with a GCS of 6 for several hours and lasting memory loss, co-ordination and cognitive issues). I’ve maybe got an infection in my pacemaker, or my heart is just being an idiot. I’ve torn a couple of tendons in my pacemaker shoulder – we don’t know if it was the surgery, or a pacemaker infection that spread, or what. My cardiology team are M.I.A and I don’t want to chase them any more.

My days are a swirl of suicidal ideation and… PUPPY CUDDLES. Click the link to meet Teddy.

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I need somebody…

My feelings came home, and they brought with them all the big bad wolves I’d begun to optimistically think might no longer be scratching at the doors to my mind. Due to the deterioration in the state of my heart, I have spent a significant portion of today… unconscious. I have spent the rest of the day with my head buried into a balled up blanket and music playing very very loudly… because I can’t stand to see or hear myself crying, and today I have SOBBED – raw and ugly and uncontrollably until it was too much for my heart and I’d pass out right were I sat.

When people don’t know what to say, they just don’t (my mother included). When people don’t know what to do, they don’t do anything. When people aren’t sure how to be there, they run. It’s like a reflex, a natural protective mechanism that often occurs without complex thought. I don’t blame people at all but my goodness do I miss them. They don’t have to change the way they act with me because of a rebellious organ, they are the normal I am so desperate to maintain and normal conversation and interaction makes things so much more manageable. Things are tough at the minute, without the network of people I’d found a home in suddenly retreating like rats fleeing a sinking ship. I totally get the instinctive recoil. It’s natural to run from a lit fuse. But it was the loneliness that broke me today, the lack of any sense of normality because I didn’t have anyone just to chat to, and my own mother didn’t have time to listen because of work. That isolation was the first feeling to sneak behind the wall of my apathy, and once the dam was breached, the emotional pain was so intense it was almost physical. My body can do whatever it likes, as long as there’s a life left to lose if it fails. Lose the people that matter, lose your social life and your support network and that sense of self and of your own humanity… And you spend your day crying, and collapsing, and crying, and collapsing. Today I felt like I was ceasing to exist again. It cannot slip through my fingers again.

Heads up – the next bit contains triggering themes, and talk of suicidal ideation.

Things are going to change. Due to my physical incapability I am going to have to spend a lot more time in this flat, and attend less at university (only on the other side of the River Thames, but the walk to the bus stop is too much and I cannot afford a cab). All I wanted was to put on my shoes and go to that bus stop and walk into a lecture theatre and just pretend to be an everyone else. I wanted to laugh, I wanted to talk about stupid trivial things that won’t matter tomorrow, and poke fun at my friend who says he looks like a child now that he’s shaved his beard off. Then instead of that I picked up a blade, and I held it over an artery and watched it bounce to the beat of my heart as tears rolled down my cheeks. I liked the ultimate control I had then, at a time when my life no longer feels like mine. I liked that a poorly timed sneeze would have been the end. I liked that it was that simple. It made me feel like this hell is something I have a choice about whether or not to endure (there is no choice but to go through it all, but I needed that illusion). And then I cried harder because I didn’t want to die at all, I just wanted a way out of the prison my body has become again and I realised that at that particular moment, severing a major artery was pretty much the only way. I cried so hard the blade fell from my hand. I cried so hard I couldn’t breathe in. I cried so hard that the palpitations got so strong I almost felt like I was being punched from under my own sternum. And then I passed out again, and that was ok.

When I woke up, the only two people from my course who know bare bone details about my health decided to video call me. When I answered that call, I was suicidal and crying. Within minutes, I was smiling, and I felt alive again, I felt like me, I didn’t feel like a freak to be feared. I didn’t feel like a heart problem. I didn’t feel like all was lost. We only chatted for a few minutes between lectures. When they went, I lost consciousness again. When I woke up, the tears did too.

I’ve more than served my time, but my heart has imposed another sentence. I knew that would eventually hit home. I knew all these feelings were there but I refused to acknowledge them. When I started crying, it took me ten minutes to stop stopping myself and just let it happen. And now, almost six hours later, I don’t know how to stop.

I feel so stupid, so ungrateful, so PATHETIC. But given the situation, and the reactions I’ve seen of the staff involved in my care, I feel like a few tears would have been justified. I just feel so alone. I want to go home, I just don’t know what that is. There is nowhere I feel safe – I don’t feel safe in my own body, how could I find a place to feel safe outside of it?

I’ve gone from this (a few weeks ago) to this (yesterday’s post), to emotionally (and physically) being riiiiight back where I was months ago. Only I’ve been dissociated and apathetic for so long that emotion is a very foreign and hugely overwhelming thing right now.

I’ve never wanted a small dog before (I always told myself nothing smaller than a Spaniel), but I really want to get a teeny tiny puppy, just to end the loneliness, just to be around something that sees me beyond this situation. Just to feel like something isn’t afraid to be around me. I’m going to be spending a lot more time at home. I don’t want to do that alone. I need something to need me to be alive, I just need somebody, even if they have 4 paws. If I don’t find somebody, I’m scared about what I might do, because I can’t cope right now. Physical health issues don’t just damage organs, they take down entire minds.

No idea where I ‘m hiding, but there’s no way but through.

… but it pours

I’m sat writing this with eyes full of tears that I can’t let myself cry, because I am trying so fiercely to shut out the reality I thought was no longer mine. It’s amazing how long and steep and exhausting the road to where a normal 22 year old should be is, and how quick and effortless the fall back to… this… is. So you’re going to have to forgive me, because if I don’t write this down, the tears won’t come; and if I don’t tell myself I’m going to post it, then I won’t let myself write it down. Ironic really – I’m living the situation, but I can’t handle it staring back at me from a screen. The only way past this wall of emotion is through it. So here we go…

I love my masters degree. It sets me alight, and it gives me a drive, and it has been my focus in a way my previous degree was too overshadowed by health hiccups to ever be. The people on my course are incredible, and all but two of them are totally unaware of my health issues. I hadn’t planned on telling anyone anything, and then last week happened. I’d been finding day-to-day life harder and harder and more and more exhausting. A half a mile walk to the bus stop felt like a marathon and left me with palpitations, coughing up foam as I waited for the bus to roll in and hoped there was a seat. I thought that was just because I’d tried to be like everyone else before my heart was quite ready to allow that (and my pacemaker is set in a way my heart doesn’t agree with). And then I realised there was something rather wrong. I realised too late really. I realised as I was sat about to pass out in a room full of people who thought I was an everyone else. I sat there, my vision swimming, my hearing gone, my head floating to the ceiling of the lecture theatre, and I couldn’t let my heart do that to me again… So I somehow held on and managed to leave. But I ended up in hospital almost as soon as I had managed to leave my course-mates behind.

Long story short – my heart baffled everyone who saw my ECG tracings except me. And then in walked a cardiac physiologist who has worked with me at the specialist heart centre I am usually seen at, and he saw the changes too. It wasn’t just that my pacemaker settings were inadequate (although they are), my heart has decided to fight the things helping it again. It has managed to do new versions of things that were baffling the first time they occurred… And thrown some totally new things into the mix. Essentially, my heart gets so confused by its own electrical system that it can’t fill the main pumping chambers, so they beat when they’re empty, and I get mad chest pain and palpitations as everything wriggles about to try and compensate, until my brain pulls the plug and I hit the floor for a little bit.

I ended up in a hospital with consultant cardiologists who didn’t understand the physiology of my heart (my normal), let alone its abnormal behaviours. The only time I cried was when I woke up one morning (on a ward where I was the youngest patient by about half a century) and some delightful human had stolen my bank cards, my ID, my everything, from the drawer beside my bed. The rest of the time, my brain was so overwhelmed that it just added a new layer of apathy and numbness over everything. Emotionally, I shut down. It was a protective mechanism against the bad things, but it also meant (and still means) that the good things don’t feel good any more either. I got really, really lonely (not that I was awake a lot). I just wanted someone to be there, someone to talk to, and the situation was becoming a bit of an elephant in the room. So I told two of my friends from my course. Nothing specific at all, just that my heart is, and for quite a while has been, a total arse. Their reaction was pretty incredible, and perfect – unlike anyone before them, they got to know me without even knowing my health was a thing, so rather than my health being a barrier they couldn’t see beyond, my personality did that instead and blocked out the health issues.

I’ve never been well enough to get a job, and to support myself through my studies I’ve made lists and lists of jobs to apply to. Because I thought I was an everyone else. And now I honestly can’t stand for long. I walk along bouncing off things, drunk on a lack of blood to the brain. I don’t know what I did for the last 24 hours, but my existence at the minute swings like a pendulum between nerve pain and me being completely out of it and drifting in and out to the music that is currently holding me together, so it was probably just that.

Today I applied for a PhD. Today all I could think about was how I need to contribute somehow to stopping someone else’s life slipping because of a ball of muscle beneath their sternum. Tomorrow I go to the heart centre with the only guy in London who understands my physiology and the wonders of Skippy. I’ve spoken on the phone with another member of staff involved closely in my care. He’s got nothing. When Skippy goes down, the other health hiccups hiccup, so I’ve been speaking to other humans too (I felt a bit better about not feeling emotionally great when the nurse at the other end of the phone was left speechless by the turn of events). I’d come so far from here, how did I end up back here again? And how on earth did it happen so quickly and so… sneakily?

I could walk my dog, I was doing my degree, I’d moved out, I was almost well enough to apply for jobs and support myself financially (when all my feelings hit, the financial stress is going to BREAK ME), I was living an independent life, I was functioning. I wasn’t well, but I was well enough to pretend I was (if that makes any sense). What I didn’t know about couldn’t hurt me. It wasn’t raining. And then it poured.

I don’t know why I put myself through this. From a non-emotional stance, it seems like a lot of effort and a lot of surgery just to propagate more unpleasantness. I’ve shut that thought down by living very much in the present. No looking back at what my heart has just taken from me again, I can’t go back and hold on, so why watch the past get more distant and further out of my reach? The future is something my brain can’t compute. But I don’t want to give up, and I don’t want to give in. So I curl in the comfort of each second – where the past is behind me and the futility isn’t here yet – and then I hop to the next second, and the next, until I pass out. I don’t think I’ll be well enough to do a PhD. I didn’t think I’d be well enough to manage a masters, and so far my attendance is already less than 75%… 4 weeks in. But that is not the thing that matters. What matters is that I didn’t think I’d get through my first degree and I did. I remained on a planet that several of my organs were so desperate for me to leave.

It’s raining so hard that my world is flooding, but everything still stands. When the waters subside I’ll come back to it, save what I can, plug in a few dehumidifiers, replanted the walls, and come home to the life I refuse to leave behind again. I just want to give something back, and I was so close to being able to do that.

“Look, I didn’t power through the struggle

Just to let a little trouble, knock me out of my position

And interrupt the vision

After everything I witnessed, after all of these decisions

All these miles, feet, inches,

They can’t add up to the distance

That I have been through 

Just to get to a place

Where even if there’s no closure I’m still safe

I still ache from trying to keep pace

Somebody give me a sign, I’m starting to lose faith

 

Now tell me, how did all my dreams turn to nightmares?

How did I lose it when I was right there?

Now I’m so far that it feels like it’s all gone to pieces

Tell me why the world never fights fair” – Home, by Machine Gun Kelly, X Ambassadors & Bebe Rexha

Still can’t let myself cry, that feels far too much like giving in. So I’ll stuff all of the above back into my brain, and play music loud enough to keep it at bay.

No way but through.

The trouble is, what I’m going to have to go through is kind of unpleasant. Oh well.

How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

Trying to Catch a Break

I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).

Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.

Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.

On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.

I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.

I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.

While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.

I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.

But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.

No way but through. Somehow.

;

“The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

– R. Frost, “Stopping by Woods on a Snowy Evening

In my mind, this post stopped at the end of that quote. In reality, I also almost stopped recently – wrote a final thank you card pleading for forgiveness, and a list of contacts, stuck both tear stained articles on the wall at the end of my bed, and prepared to curl into the darkness of whatever waited beyond daylight and moonlight. I could not see the wood for the trees. There comes a point when you are so tired – tired of hurting (physically and mentally), of thinking, of sinking, of almost dying, of being, that all you want is a break. And when life won’t give you that break, when it sees your white flag and doesn’t cease its fire… Your mind, the lone and weary soldier, pulls out the revolver that has until that point just been a comforting presence in your metaphorical waistband and decides that it has no option but to pull the trigger whilst the barrel is aimed at its own skull. The unpleasantness cannot take you alive. The pain is not one you can endure.

I am in a great deal of physical pain after my latest heart surgery, taking morphine and tramadol just to try and sleep through nerve pain caused by scar tissue sitting on top of a nerve. But my mind… nothing could numb that.

My revolver was medication. Medication that sat there, sparing me from further unpleasantness when I took it at the prescribed dose, but that any higher dose was also my revolver – deadly. Quick. Freeing. The knowledge of that was enough of a comfort to keep me going. There was a failsafe. I didn’t have to hurt forever. Just one more day. And then the next day, just one more – and while I couldn’t imagine it, I knew there would be a day where survival wasn’t a task, but something I didn’t have to think about. And then came the day I wrote that card, and made that list, and could not stop the tears.

I have been saved all too often lately by words. Words that came from places I didn’t expect them to, from people who understood me in ways I wished those closest to me could. First, my personal tutor at university (who I also almost died on last week, because my heart is an ARSE) – with one simple sentence about PTSD that took away the stigma my mind sharpened and used against itself, and completely transformed the way I saw myself. I used the support available for me. I asked for help I had been turning down for years. Then, the other night, a dear friend, amazing human, and creative soul behind this blog, who accidentally saved my life with words that found me in a place that nobody else (myself included) could.

And then I remembered the poem that begins this post.

The emptiness of oblivion is comforting, tempting, enchanting, but not a destination I am yet supposed to visit. I owe it to the humans whose kindness and understanding have been transformative forces in recent weeks, to move beyond its temptation, to carry on going wherever I’m going. Those people made me realise that feeling like this is not weak, nothing to be ashamed of, but understandable, excusable, human… and survivable, somehow. I made no promises to them anywhere outside of my mind, but I cannot betray them. I made promises to myself – to get this degree, to do something, to raise money to help fund research so that other people’s bodies might not drive them to the hell I have been to/through. And thanks to people (some of whom I have never met) I see myself as someone worth keeping promises for. I have a long long way to go before I get rest or respite of any sort, physical or mental, and I have to accept that, grit my teeth, turn off, and keep walking – sobbing and screaming and writhing in pain if that’s what it takes (also things that before I took as signs of my own weakness, and now acknowledge as a strong person doing anything and everything they have to but give in). It doesn’t have to be easy, and I know it won’t be. My situation is tough, it’s even recently been described to me as “crap” by somebody I expected to brush it aside. I’m allowed to find it tough. I’m allowed to hurt so much I can’t keep going. It’s ok to cry myself to sleep, to want to never ever wake up again. But these thoughts I keep inside are promises I have to keep. I have an unimaginable amount of miles to go before I am allowed sleep.

The way out of this is not six feet under, or wherever the wind may take my ashes. It’s through.

Agonisingly, impossibly, soul destroyingly (yes I know destroyingly isn’t a word)

There is

No way but through.

I sat myself down and had a thought at myself (if that’s even a thing).

When you can’t run, walk. When you can’t walk, stumble. When you can’t stumble, crawl. When you can’t crawl, drag yourself. When you can’t drag yourself, roll. When you can’t roll, just hold on. When you can’t hold on, reach out. When you can’t reach out, scream. When you can’t scream, talk. When you can’t talk, whisper. When you can’t whisper, blog. If you have to fire your revolver, fire it into the sky. And through it all, play Bastille. It’s colder six feet under. It’s lonelier when your ashes have been dispersed by the wind. There will be far more tears if you let go, the difference is, they won’t be your own. There is no way to live this life, or to be a spectator to it, that does not involve hurting. And no form of pain is a choice or a flaw – it’s a limbic system and nocioceptors (hello inner biomed student) – unconscious, understandable, protective, logical measures. Don’t expect to live and not hurt. Don’t expect to hurt and not still find reasons to smile. Pain may right now be all you feel, but even if it is ever present, it is not all that waits.

Finally, I have been taught that it’s ok not to be ok. That’s the most valuable thing any lecturer has taught me, the most precious gift a friend has ever given me (thank you blogging human, you know who you are). Something I hope not to let go of. Something I will someday pass on.

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

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?

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. 

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.