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.

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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.

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?

Testing The Water

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

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

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

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

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

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

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

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

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

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

My thoughts throughout the whole event went something like this:

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

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

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

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

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

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

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

Edit: You’re doing it again now. 

Over & Done With

I’m moving back in with my parents.

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

I am no longer a Londoner.

London is no longer home.

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

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

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

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

Kent is home again.

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

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

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

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

Other stuff that happened yesterday:

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

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

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

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

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

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

Something From Nothing

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

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

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

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

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

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

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

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

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

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

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

I am trying very hard not to do… Nothing.

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

 

Does Anything Else Matter?

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

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I did all this instead.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I saved the best part of today until last.

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

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

Does anything else matter?

Timeout

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

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

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

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

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

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

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

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

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

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

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

Tomorrow I will attempt to Christmas.

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

Every Seven Seconds

Alone, at 2am, it hit me.

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

I don’t want to die. 

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

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

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

And I just couldn’t any more.

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

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

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

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

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

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

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

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

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

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

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

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

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

All to the backdrop of Christmastime.

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

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

No way but through.