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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One Of Them

I. Ran.

Yeah you read that right. I. Ran (if you can call it that). I woke up and watched the sun rise; and while London was still sleepily emerging into the daylight, I questioned what I was about to do over and over, before stepping out into the morning in a running top & jacket, running shoes, and a pair of old jogging bottoms that I’ve been wearing as pyjama bottoms.

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One of the 398,986,384 photos (ok this may be a slight exaggeration) I took of the sunrise this morning. Canary wharf looked awesome against a backdrop of pink and grey, but this photo shows the sun peeking over the horizon so… It won the fight to make it into this post. 

I managed to talk myself out of going for a run yesterday morning, but after lectures yesterday it was all I wanted to do and my mind just wouldn’t let go this time, not while I knew my cardiologist had given me the go ahead to try (under the condition that if I didn’t tolerate whatever I tried, I told him and… Didn’t try it again). My heart hated the idea of going for a run before it even became a thing, and after FaceTiming my little brother and watching accomplished runners jogging through the park yesterday evening, I decided that I wanted to run in the dark – or at least a quieter time – perhaps sunrise (which apparently is now at 7:30am). I so badly wanted to run, but I couldn’t keep my eyes open and I didn’t have the energy to even walk too far (and then there was the 120bpm heart rate while I was laying on my bed, which was almost like the scrunched up face of a frowning toddler before the first scream of a tantrum), so I aborted that mission and went back to watching my way through every single episode of Modern Family in chronological order (I made some notes too, because y’know… Degree).

There was another huge factor holding me back though. Because… How do you teach your body to run?

I don’t remember learning to run the first time. I just… could. 12 year old me ran at least 3km a day and didn’t think anything of it – I don’t remember it ever being difficult until my health significantly hiccuped. I kind of didn’t know where to start; most couch to 5k running programmes say to run for 1 minute or walk for 5 minutes and then “gently jog” for 15 minutes… But I’m no couch potato. I am a human burrito – I spend most of my time laying on my bed wrapped in every single blanket I own. Every amount of effort was too much for my body, and I knew that as I looked through running programme after running programme. I decided I’d start by “running” for 20 seconds maximum (shorter if my body was outraged) and then walk for 2 minutes before repeating.

I was super self conscious about running then stopping all the time, because I didn’t want to look ridiculous. I eventually decided that slowing down would be far preferable to the complete humiliation of passing out in a public place, but this didn’t make it any easier to step out, and I still felt like a fraud dressing in clothes that made me look like I was good at this whole running thing.

Then I was all how fast do I try to go? I knew that in my mind I was still the teenaged girl who could outrun all but one of the boys, and who ran effortlessly to relieve all of life’s stress. Because of this I knew that, just like with my recent attempts to swim, I’d instinctively try to run at a pace that was familiar. The internet told me that I should run at a pace where I was still able to talk, and that if I was unable to talk then the intensity of the exercise was too much and I should slow my pace… According to the internet then, walking is too much for me some days.

I was lost in a dream before I even fell asleep yesterday (at 6:30pm, because yay for health hiccups – I’m joking. Obviously not yay). I woke with my head still stuck in that dream, and watched the sky change from black to pink within a space of fifteen minutes. I pulled on running clothes, still second guessing myself, but driven by something I could not contain.

I walked to the Limehouse end of Mile End Park (which wasn’t far), conscious that I would look stupid running and then walking on the path out in the open, and waiting for the guy running laps of the little green area to clear out of the way so I could have the little stretch of grass to humiliate myself in private. There was still time to back out (I should, at this point have backed out) and I wanted to bail, but I just couldn’t. And then suddenly I did it. I just bit the bullet. And I ran. For the first time in years. It wasn’t as difficult as I thought it would be, and even though I only ran for 10 seconds and then walked for 2 minutes, it felt so great. I alternated between 10 and 20 second “runs” with 2 minute gaps in between (and believe me, it took my body two minutes to just about recover). I was so happy. I was actually running. I might actually be able to run again.

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A partial view of my makeshift running track

And then I got to the 7th little jog. And suddenly like I’d been hit by a train I felt as though I was going to pass out. Out of nowhere. I slowed to a walk and wandered for two minutes, and when it came to be time to run again I knew that the last thing I should do was demand more of my body. My vision kept going to black and the rest of the time my unfocussed vision had gaps in time where I just saw nothing and then zoned back into reality. I felt dizzy/lightheaded in a way I’ve never managed to remain conscious with before. I was so spaced out that when I tried to tell myself I’d been an idiot, the words were slurred. I felt like I was going to pass out. It was genuinely scary. I walked home somehow, my legs kept crumpling and folding beneath me but somehow I’d catch myself and zig-zag on. I was in a complete daze. It felt like being super, super drunk, but there was no alcohol involved. I messaged HK Uni Friend and my mum so that someone would know where I was, and somehow made it back to my room. I sat down, and  I was stuck there for half an hour, after which point I still felt like I was on the verge of passing out, and couldn’t stand. My chest started to ache in a very familiar way and my heart rate refused to drop back down. I couldn’t focus my vision, I started to feel sick, I was so disorientated and I had a horrible foggy headache.

But it was worth it. So, so worth it.

I had a 9am lecture, and at 8:35 I still couldn’t stand. It didn’t stop me. I went to the lecture, and, still spaced out and dizzy beyond belief, I held my head up as my laptop ran out of battery, and passed out a couple of times throughout the two hours. Between lectures I turned to see Uni Babe in tears (she was having a very bad day), and did all I could think to do – wrapped my arms around her, pulled her against me, tucked her head under my chin and hugged her like she was my child or something, stroking her arm and attempting to say the right thing as she cried it all out, having apparently cried through half of the lecture while semi-conscious me sat next to her oblivious (for which I feel awful!).

Uni Babe came back to my flat with me between our next two lectures, because I felt so rubbish that I didn’t want to be alone and she was sensible enough to share that view. I made it back to my room, grabbed everything necessary to go and stay with Auntie Godmother & co. tonight (I messaged her yesterday and ended up being invited for dinner and to stay over), and then left my room to discover that in my complete daze I’d left my key card inside. I drifted into the wall multiple times as I walked down the corridor, and upon finally making it to reception was charged £5 to borrow a master key to go and unlock my room. Uni Babe was pretty horrified that I was charged, given the extortionate price I pay to live here! In a complete fog during which I ended up laying my head on the reception desk to try and stop myself passing out, we eventually made it back to uni… Only to find that I’d… Left my laptop charger at home, and therefore couldn’t make any notes during the next lecture.

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Pretty much sums it up.

It’s now past 2pm, and I still feel like I’m going to pass out. My vision is just screwy. I also feel like I’m going to throw up, and my pulse is very fast but so weak that I can only just feel it in my carotid artery (which probably explains the complete lack of control over my level of consciousness). Do I regret that feeble attempt to jog? In SO MANY WAYS yes. It made everything hit home. But also, I am so, so glad that I did it. Because it did what running used to do – I thought about all the stuff that I usually can’t bring myself to think about, and I ran through it. Running helped me deal with it and cope with the emotion it threw up, and such difficult things were so easily processed and dismissed. It was like magic. Genuinely. It made me feel so good. So, so good. I felt like someone had just wiped my entire mind clean of all the bad stuff and the worry and the stress. Also, I needed to get that urge to run out of my system, and I now feel so lousy that I’m hoping it will stay away for at least a few days.

The best moment of my year completely ruined my day (not going to lie, when I was running I forgot my heart was even a thing – my mum didn’t, she was all “Are you stupid? Normal people can do that, but they’re healthy and don’t have a heart condition! You should have taken it easy!” and she has a good point; however, I was doing so much less than the level of activity a healthy person would start at, and I thought I’d done enough to minimise the unpleasantness of the aftermath). But I cannot even explain to you how good it felt until it all went wrong. I was, for about 15 minutes, someone that I haven’t been for a very long time. I was me. And I was happy. Free of stress. Relaxed. I felt better about myself. I felt good, for no apparent reason. I felt ready to take on anything. Until my body threw everything it had at me.

The early morning hours belong to the runners and the early birds. And for a short while today, I was one of them.

For a much longer period of time, that meant, means, and will continue to mean the world.

For a currently unspecified period of time, I am paying the price for that awesomeness. But it’s a small price to pay.

No way but through.

Bending, But Still Breaking

67.9 (I’m just going to park that number there for a moment).

I woke up yesterday and immediately knew my body had gone very wrong. I’ve really been knocked back by a simple stomach bug, and my body was still reeling (although I was better than the day before, where I spent the entire day in the bathroom either semi-conscious and emptying my digestive tract, or unconscious). I was struggling to stay with it, and struggling to stay awake. I felt weak and sick and I was in a lot of pain. I sprayed myself with disinfectant, vowed not to touch anything, and walked onto campus, too afraid to miss the meetings I had arranged for that day in fear that the uni would… Y’know… Half way there I knew. I knew my pH was low because I know what it feels like.

I sat down in my personal tutor’s office, and I don’t really remember what was said. I just remember that one of the first things we talked about was my grade at the end of first year. She told me I’d got a solid 2:1. She asked me how I felt about it. I said that it was alright, given the circumstances. I then that it had taken me a long time to be able to say that, because I’d really beaten myself up about it. And then she said a number that I hadn’t been expecting. 67.9%. I looked at her computer screen. I was one more A grade away from getting a first overall. One decent exam (I seriously screwed up a couple but didn’t fail any). It was much higher than I thought my average was (I thought it was around 62% for some reason) so I was suddenly so relieved – so much easier to claw my way to a first overall now!

She told me it was a good grade, but that she didn’t feel it was what I was capable of and it didn’t reflect me. I was kinda reassured, and then my self-critiscisms were kind of reinforced. I said that I agreed with her, that I knew I could do more, and that if I had put in the work then I would have possibly done so (I was TEACHING myself 22 hours worth of taught material for the first time the night before the exams because I’d missed all the lectures due to being so unwell). She said that it was a shame I hadn’t been able to get what I was capable of, and we discussed that this was why I’d been encouraged to drop out for the year and come back.

And then she stopped. And she just sort of looked at me and told me it was really, really impressive. Amazing that after all the crap I had to deal with last year I was even still here. She knew what I’d been dealing with in personal and health areas, and she wanted us both to stop and acknowledge how “amazing” it was that I’d got a grade like the one I got after a year like that. Those words from her mouth meant something more. Her approval meant more than I thought it did. And it shut them all up. I missed over half of taught programmes and most of the assessed work. I was in hospital at least once a month having almost died, and I would leave hospital to go to lectures. I’d pass out in lectures, I’d go straight home and sleep until the next day’s lectures. I fell apart mentally. I sat my exams with a low blood pH… And even though I went through all of that I threw a solid 2:1 at them. They can’t argue with that. And I can’t argue with that. Because when she said it, I thought back over just how awful that year was, just how near to death I came physically, and mentally how close I came to taking my own life… And then I was finally a little bit impressed too. Just a little bit, just for a little while. For the first time, I managed to briefly shake the negativity I attached to that grade.

I tried to seek some reassurance about whether or not uni could kick me out because of my health. I just needed somebody to call my brain out about how ridiculous it was being and just state university policy at me or something, but that wasn’t a conversation topic that could be dealt with, and I was told to go to advice and counselling with it.

Anyway, that meeting went a lot better than I expected. In the lift there were a bunch of first year biomed. students, but I didn’t know whether I was going to pass out or vomit, so I didn’t stop to talk to them. I somehow made it home, the world out of focus and moving in ways it shouldn’t, my head feeling so, so weird. I saw myself in the mirror. My lips were white and cracked all around the edges. My face was pale and greyish. There were huge shadows around sunken, half opened eyes. Hello acidotic me. I tried to do my coursework, but I don’t know what happened. I think I must have lost the ability to human for a bit. I came round in time for my next meeting.

I headed back to campus to see my disability advisor. The urge to pass out wouldn’t leave me, and as I stood in the corridor outside his office it intensified until everything faded to black. I hit the wall, falling backwards, and somehow dragged myself back to the land of the living before my legs fully gave out. He opened the door and let me in. I sat down, and THE FIRST thing he said was well done about my grades. I was puzzled. He said that after the year I’d had the grades were fantastic, and that I should be proud of them anyway because they were good even for someone who hand’t been through all I’d been through. I tried to push the conversation off but he made us stick on the subject. I said I’d been kind of disappointed with the grade, and that my personal tutor even agreed that I could have done better.

“No, honestly. You went through so much last year. I can’t begin to imagine how tough it was, but I know it must have been very, very tough. For you to do so well is… Fantastic! It really is incredible. You should be very proud.” Two people saying it in one day? He said that I’d shown my school I could go through more than most and still produce a grade to compete with most. He said that was probably why they seem so much more helpful now, because last year I was probably dismissed as the sick kid who couldn’t possibly pass having missed so much.

I told him that I’d been so stressed about the reaction of university that I hadn’t wanted to go to hospital. He stopped then, and told me that my health has to come first, and that he and the disability services will clear up any backlash that should occur. He said the only reason I could be made to consider leaving the course was if I was in hospital every few weeks and had missed most practicals and lectures (as happened last year). He listened to my concerns, and he found solutions. Most of the time all I needed was for him to tell me that the university would be absolutely ridiculous to do such a thing, and that they couldn’t do something without running it through him (at which point he said the worst thing that would happen would be a heated debate between him, me, and a couple of people from my school of the university). I’d been told that ICU/emergency admissions due to reasons I’ve been admitted before would not immediately be considered an extenuating circumstance as I’d been in the situation before. This apparently is ridiculous, because they are each assessed independently. I was terrified about attendance, as I’d almost faced consequences of poor attendance last year, and he ended up printing a document that all my academics have copies of, which says that they can’t take action against me because of my attendance without consulting disability services. So much stuff I was told last year couldn’t actually have happened. And he’d told me that before, but he spent an hour just talking to me, calming me down, giving me advice, and putting all my anxiety away again. It was such a helpful meeting. I thanked him any times, and he was pleased he’d actually been able to help. Disability services are basically the superheroes of this university and I wish I’d accessed their services sooner! They even have details of this website that tells you about the disabled access and facilities for every building on campus, and they can get me access to extra lifts and stuff put on my keycard.

I meant to do my coursework when I got home (I’d written a couple of sentences of the whole thing and done none of the calculations or graphs) as it was due in today. I passed out. I couldn’t stay with it. I’ve no idea why I’ve been spending so much time uncontrollably unconscious on my floor, but I’ve spent my time mopping up an awful lot of blood over the last couple of days (the floor is hard, and my face/head likes to bleed when it hits it).

I’ve been so on top of things. I’ve been up to date on notes, I’ve been fighting off acidosis over and over, but one tiny stomach bug has ruined me. It was too much for my already battling body to handle.

I feel like life just said this to me…

No matter how on the ball you are with things, there will be a moment where you find yourself on the verge of passing out, wearing the pyjama top you’ve had on for two days underneath your back-to-front wooly jumper… as you walk though campus fighting to remain conscious in order to hand in the coursework assignment that you finished half an hour before it is due in. That same coursework assignment that even the internet couldn’t help you with, that you were too ill to even write more than half a page of until this morning, and that was so thick that the staple wouldn’t go through it so you improvised and it now looks like the stapler tried to eat it… And you’ll do that having left your bedroom looking like a natural disaster tore through it, because half of your coursework fell down the side of your bed and you had to remove the mattress and launch a rescue mission in order to recover it, and you’d been too unwell to leave the bed so had accumulated most of the contents of your room there (which you then just moved to the floor to remove the mattress). You won’t even care that room is currently a wardrobe/ laundry basket/ rubbish bin/ bookshelf/ food cupboard/ washing up bowl/ desk tidy/ all round general health hazard; all you’ll care about is that it has your bed in it, and you want your bed.

I almost permanently feel like I’m going to pass out, unless I’m curled up in bed. When I stand for too long, the world starts to fade to black and my muscles give out on me as I start to pass out (which will make the three hour lab session I have tomorrow working with blood and cyanide something-or-other (sounds sort of risky) rather interesting). I know that the practical is long and tedious because I bumped into a friend on the way to hand in my coursework. She said she knew I was unwell because I hadn’t been in lectures, but I don’t think anybody has any idea how unwell I am. She didn’t see me picking myself up off the floor with the room spinning, and having to hold the walls just to stand, minutes before I bumped into her. I don’t have time to be unwell.

I don’t miss lectures for anything. I passed out in a lot of them last year without making a fuss – just put my head on the desk and let myself go. But my disability advisor made me see enough reason to go to hospital yesterday, I said I’d go when I left his office… And I couldn’t. I can’t do it. So I’m trying to cut my body some slack so that I might not have to go there, which may mean missing more lectures tomorrow morning in order to actually make it through the practical (honestly though it’s been three days since I stayed conscious for three hours straight. I’m having a problem. I’m very unwell).

If I give into it a little, it might not almost kill me. I’m already in far too deep to break the surface, so I’m hoping that giving in to the current might stop me drowning and let me conserve some energy to swim free sometime soon.

Over the edge I can’t stop myself
Off the ledge throwing punches
Over the edge I can’t steer myself
All over again, I don’t want this

If I bend then I might not break
I should think about giving in
If I bend then it might be okay
If we’re thinking about how it ends

If I bend then I might not break
I should think about giving in
If I bend then it might be okay” 
– Frightened Rabbit, Break

I can’t deal with near-death again right now. Not emotionally, and not physically. I’ve cheated it so many times that people lose any sense of how serious the situation is, but each time could be the last. This body is broken and beaten and it won’t do this much longer. Months ago I was told the next time probably would be the last and I’m waiting. Waiting for that time. And I don’t want the next time to come because I don’t want… I can’t… I’m not ready yet. I can’t do it yet. I can’t deal with the emotional consequences again, and I cannot face the doctors whose emails and calls and appointments I have been ignoring. I am scared on so many levels of so many things and at the same time I’m far too relaxed because I’m stuck in denial.

And I’m too tired to fight
And you’re sick of feeling sick
And so am I, It’s alright
It’s just blood under the bridge
Ah that’s alright, it’s alright
It’s just blood under the bridge” 
– Frightened Rabbit, Blood Under The Bridge

I feel so unwell that I’m scared. This body is bailing on me. So I’m bending. I’m binding in the hope that I might not break. Even now, I’m out of it, and I feel like I’m about to pass out… Only, this feeling now doesn’t leave between my losses of consciousness so… I don’t even know any more.

I’m so scared about how this will end.

How will it end?

Here’s to hoping, I guess.

No way but through.

I guess now I understand why my personal tutor said it’s so much of an achievement that I’m even here.

Flatline Clothing Is Go!

Flatline banner

I was bored. I needed a project. I am too unwell to get a job yet need to be able to afford to continue living in London and would like to be able to fund a service dog in order to reduce my chances of running off with the grim reaper (and change my life by giving me back my independence and taking away the fear I have). I don’t like asking for handouts and had thought about selling t-shirts for a long time. I bit the bullet all of a sudden for some reason and Flatline Clothing was born (yes that name is sort of to do with health hiccups and heart issues. Took me so long to come up with a name that wasn’t taken!).

I’ve been sitting on this news for just over a month, slowly working on it as and when I get the time until today I have finally created a few products (hardly any of which are clothing, ironically). My vision sucks – I have double vision and a time delay and see after images. My left visual field is more of a left visual lawn. In combination with this and the fact that I can’t use graphics software, the logo is a little COMPLETELY POORLY CREATED. I fail epically at designing t-shirts and all the products are currently black and white because I like the aesthetic of that. But I have finally set up a website. You can get a teddy bear. A TEDDY BEAR. I mean come on guys, who doesn’t want a teddy bear? It’s wearing a t-shirt that says “NO WAY BUT THROUGH” on it because hey, that is a philosophy I live by. So not only is he a teddy bear, but he’s a motivational and supportive teddy bear who totally has your back when you feel like there’s no way through at all. There’s also flip-flops and a phone case in the same design and a mug and… Not a lot else at the minute. But hey, they make great gifts for people that need a little motivation every now and again. I didn’t set the prices, so don’t shoot me, but it’s just something I thought I’d have a shot at.

I plan to branch out into a bunch of health puns and motivational stuff, because there are a whole community of chronically ill people out there that I feel could really relate and personally I love it when a pun or phrase on a t-shirt completely connects with me in a way healthy people can’t. Anyway, Flatline Clothing is go (when I make the page active)!

Flatline banner

My Anglerfish

“I know this is really rough on you. I’m sorry.” was the last thing he said to me as I walked out of the door. We both knew it wasn’t his fault, but I liked it – his guilt. It meant he cared. It meant he had enough of a heart to feel bad, and it meant he wasn’t wrapped up in the thrill of the challenge. It didn’t excite him, this new twist in my health, it bothered him. I was not, in his eyes, a puzzle to be solved – I was a living, breathing, vulnerable (sorry excuse for a) human in need of his help. And I liked that. I liked that in that clinic room I retained my humanity, even in his eyes. It’s why appointments with this consultant don’t scare me as much as all other appointments that ever existed/ will exist ever.

I walked in to find him pondering over the ECG trace the nurse had just done of my heart (you’d think after so many ECGs I would no longer be phased by random strangers seeing my boobs but NOPE, I still crossed my arms and avoided eye contact for as long as was possible – I’m shy).

“Hmmm, does your heart still feel funny now?” There was an inevitable furrowing of his brow as we discussed my recent hospital stay, and he turned back to the ECG trace. I knew it was bothering him even before he said,

“You have new changes on your ECG trace, I just need to get someone else to look over this, ok?” He wandered off with the ECG trace multiple times, and got a nurse from the pacing team to come and ‘interrogate’ Reginald (the thing that lives in my chest), but Reginald’s parameters had been set all funny, so he had no idea what my heart had been doing at all. Thankfully, this means that the bottom chambers of my heart didn’t do anything extreme enough to terrify Reginald, which instantly chilled me out… Everyone else, not so much.

My consultant ordered an urgent MRI, and also wants to give me a general anaesthetic to re-do the thing I had done last year. I have to go back and see him within the next month to see where we go from there. Best case scenario of the whole thing involves one or two general anaesthetics to allow him to poke about inside my heart – worst case involves three, because he’s not sure that the second surgery thing he might have to do (depending on the first one) will work. And all I could think when he started talking me through the risks and stuff (like surgeons have to) was I cant miss any more uni because they are going to throw me out and they are so unsupportive and uni is my life and oh no don’t make me choose help my brain is running away with itself excuse me what was all that stuff you just said? Why is uni worrying me more than you poking my heart? The world is messed up.

Apart from my justified concerns over having a general anaesthetic (or three!), I’m not actually worried about the possibility of my cardiologist poking around in my heart at all. I would go through anything to return to my normal standard of unwell. Anything. They can’t get blood from my veins… At all (even my arteries are now so underfilled/ scarred in the points at which they are accessible, that this is rarely a success either). We decided to stop the diuretics I am on, as I am almost back to my normal weight and my kidneys are a tad temperamental which means that if I stay on the medication I have to have blood drawn every seven days to make are my kidneys are still… Kidneying. (This is impossible, because they can’t get normal cannulas and stuff into me usually). If I stay on this medication, therefore, they would have to put in another portacath/ port – and the last one of those I had gave me sepsis, nearly killed me, and went too far into my heart and poked it all the time causing dangerous arrhythmias (paediatric surgeon not so great).

This is something many doctors have been pushing me to have done recently for many different reasons (long before I started this new medication) – allow them to insert either a Hickman line, a third (or would it be the fourth?) PICC line, or another UFO (what I called my last port because it looked and felt like someone had crashed a small UFO between my ribs, and after a pretty long time, a load of alien invaders/ bacteria/ ninjas, came wandering out of it to invade my bloodstream and basically refused to die).

When I was in hospital two weeks ago they sent an anaesthetist down to put in yet another central line (I’ve had a ridiculous amount of these, they usually put a new one on every admission, but even these are now impossible to insert because I’ve had so many that all the central veins they usually place these lines into are scarred and uncooperative). I was again told that the situation was ridiculous, especially as I end up IVs so often to sort of completely save my life… But it was only when I had a nightmare the other night which simply involved a consultant (it usually ends up being a consultant, after every other grade of doctor has tried – my veins attract everyone everywhere it would seem) who came to try and take blood, that I realised I’ve had enough of people taking over 20 stabs at my veins, and then my radial and femoral arteries, before they eventually admit defeat. Every. Single. Time.

After the appointment, lunch in the hospital restaurant, and a stroll past the hospital fountain (as if a newly renovated/ partially rebuilt hospital in The City of London entirely and only for broken hearts wasn’t kind of awesome enough, they centred all the buildings around a courtyard with trees and an awesome fountain, and then decided to have a museum there too… I mean come on…) I went back to university. Home to halls. Although, it did’t feel like home. It felt like a scummy student flat shared with at least two people who seem to mistake our kitchen for a cesspit (there we go, I held that criticism in for an entire year. My flatmates can be completely gross. COMPLETELY. We’re talking, going home for two weeks and leaving un-scraped plates in a sink full of what ends up being grey, mould-infested water… And it often smells like something has died. Just… No).

I’m slowly managing to walk very small distances again. I’m pushing my body and I know this is at times incredibly stupid, but I don’t want to be limited by it, it is just going to have to deal with my determination to human. Nevertheless, retrieving Winston the wheelchair from my uni room (was too big to fit in the tiny car I was picked up in last time) was a very good idea. I was also reunited with my guitar – after a small incident in the end of last year involving what they were pretty sure was meningitis (they let a junior doctor do the lumbar puncture while I was in intensive care, and after the third time she tried and failed, resulting in the most intense pain I’ve ever felt in my life, I refused to let her anywhere near me with a needle again. They gave me the treatment for meningitis anyway, I got better, it was all ok in the end) and cerebral oedema, I kind of completely forgot how to play guitar. And how to write. And what a lot of words meant (all fixed now… Apart from remembering how to play the guitar – I taught myself before and I’ll do it again!). I grabbed all of my sketching stuff and the shelf full of books I never found time to read – both of which I intend to make full use of over the summer!

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Winston has alternative uses when the walk is so short that I don’t require his assistance myself – saved us a lot of extra trips! The plastic tub at the bottom of the pile that is stacked up on Winston is literally just full of books and a few art supplies – aka, everything necessary for a summer of awesome rainy days (because let’s face it, this is England).

My bonsai tree was also liberated from the cess pit. It’s a pretty amazing little plant – it survives for months without water when I forget that it exists, and whenever I nearly die, I return to find all its leaves dried up and falling off, and become utterly convinced that it has died. I water it, and a few days later the old twigs dry out and new shoots start to grow from the trunk. I’m pretty sure that my body and this bonsai tree are the same – we both survive when nobody expects us to, and when we totally shouldn’t. I got him before I started university and named him Harvey Tree (don’t even ask me why because I have no idea. I like to name everything ok, it makes life less boring).

I submitted my extenuating circumstances form to the reception of my school at the university, explaining why I had missed my exams. Then I got in the car and was dragged off into that involuntary sleep which poor health generates, the kind that you wake up from feeling like you never slept at all. I woke up back in Kent, and was smothered by my dog as I opened a parcel that had arrived. I’ve been ordering lots of random online junk over the past couple of days, but I ordered myself four books to plough through (in as many days or less) All Quiet on the Western Front and three Dan Brown books. I also FINALLY managed to fit normal shoes onto my feet now that all the extra fluid that had pooled in them has been kicked out by my kidneys. So today was another good day. I’m lucky. Right now I’m about to dive back into the 864 page book I’ve been trying and failing to read for the last couple of days.

“Just keep swimming, just keep swimming” – Dory, Finding Nemo

(my little brother used to be obsessed with this film when it fist came out, and he watched it so many times a day that he wore out not one, but two DVDs of it!)

I mean seriously though, that animated fish was totally right – if you don’t keep swimming into the big deep dark scary trench even when you’re scared, and find an even bigger scarier anglerfish (link to the scene from the film) that scares you even more, how else are you going to find light to read the diver’s mask that you lost, and discover that the thing you so desperately want is at 42 Wallaby Way, Sydney? How?! (also I’m quite impressed that I remembered tall of these details without searching the internet for the clip that I haven’t seen for a couple of years)

My point is that health, and life, even love and trust, get scary sometimes… But the things that scare us the most, sometimes, in a weird way, help us find and realise things we never would have otherwise.

There is an anglerfish in every abyss, and sometimes instead of eating you alive, it’s light will show you the way out of wherever you are, show you things about yourself and humanity that you didn’t know before, and give you back the things the darkness (physical health, depression and mental health etc) took from you and hid from your view right in front of your nose.

This whole health situation is my abyss. Somehow, a very small part of my brain just kept swimming, unsure why, not even sure what it was heading for, just getting lower and lower and losing sight of any light at all, but determined not to give up. I guess being anaesthetised to let a surgeon poke my heart is my angler fish – it’s generally a pretty scary thing I guess, but all I can see is the light, the potential benefits, the diver’s mask it will illuminate that will show me the way to the rest of my life (and to having a quality of life again). Right now, I’ve lost the map, and I am aware that the only way to find it again is to chase that anglerfish.

I want to be able to go for a run again (but right now I’ll settle for being able to walk… I miss walking my dog along the routes that neither of us can run any more, it was our ‘us’ time.)

For You, For Me

When I was 17/18, I remember being sat in an assembly at school that genuinely made pretty much everyone in the room feel so inadequate we wondered why we bothered with anything. A teacher stood for half an hour and her general message went like this:

I once had a student from an awful background and he overcame amazing things just to fight to be allowed to have an education…. (changes slide of presentation) The person on this screen is 16. They’ve revolutionised their country and changed the world. They have an incredible story and are inspirational… Now look at you lot. You’re 1-2 years older and you’ve achieved nothing. What have you actually done? What have you been given the power to do? Why have you all done nothing?

I think somewhere in all of that there was meant to be a motivational message. But suddenly we all felt guilty for not changing the world, for sitting back and thinking our A levels and typical teenager issues were difficult to deal with. People got a little angry, in a you have no idea what we’re dealing with kind of way. She then went on to say that soldiers and emergency service workers and doctors and nurses weren’t heroes (because , and I quote “they would be nothing without teachers”) and that teachers were actually the true heroes of the world (at which point in my mind I may or may not have shouted a few obscenities and publicly given her a bit of a slap) so admittedly I think the whole thing was a bit ridiculous; but even now, two years later, it has stuck with me, that feeling of not being good enough, the message she tried to imprint on our brains.

Why do the marks we leave always have to be impact craters? People throw themselves into the unrelenting stone wall of their ambition to ‘be something’ or make a difference, over and over again; yet more often than not instead of leaving an impact crater all they do is ricochet or shatter against the cold defeat of their perceived failure. Why can’t we be content with smiles? As somebody who seems to leave a trail of pain and frustration in the minds of the amazing people I call my friends and family, I’d do anything to leave a smile instead of an emotional scar or a furrowed brow, and on the occasions that I have done so (which are very few and far between) it makes my day. Why does it feel so wrong to be happy for yourself occasionally? There is a difference between freshly discovered self worth or the relief of finally succeeding, and pride. Even if there is no success to provide an opportunity for such emotions, good intentions, if present and focussed upon, should cushion the impact of hitting a failure.

I’ve decided to attempt to take a month off of studying, seeing as the university year is over and my final two exams now don’t take place until August. In that month, I have a lot planned. I want to set up the t-shirt business (for want of a better word) that I’ve intended to start for months now (in an added bonus I now have plenty of designs). I want to focus on the writing projects that provided me with an outlet when there was (I felt) no other place to turn, and potentially email the individual who became very frustrated when I turned down so many offers to publish a novel I wrote about a teenager diagnosed with heart failure (I got sick of the way most literature romanticises illness and skips over the real emotional issues it throws up) and go back on my decision. Whenever life gets difficult, I seem to end up with an 80,000 word novel about someone my age going through the same thing – my way of dealing. Unfortunately, recently I haven’t been well enough to write, but I did also compile a series of paragraphs, poems, mini-essays and extended metaphors about the way I felt and the thought processes I was lost in, which may also (once completed) venture into the real world where people can read it. I started another novel, and I have no idea where this one is going, but I’m just going to run with it and see.

Oh, and I need to get rid of the fluid on my lungs and the ascites (fluid in my abdomen) that has returned and refuses to leave. (On the plus side, I have finally rediscovered my tibias – I thought my legs had returned to their usual size, but it was only when the swelling went down and they returned to normal that I realised how unhealthily thin I am.

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Yes this is a picture of my legs. Yes, I finally managed to fit them into something that wasn’t a size or 2 too big with zips at the ankles. No, they probably don’t look as twig-like from this camera angle as they do in real life, but my thighs are as thick as my shins were this time a day ago (so JUST about as wide as my hand), and that scares me because I couldn’t actually consume any more calories if I tried.

But anyway, I want to stop running my body into the ground (metaphorically, of course, because I can just about stand let alone run!) and for the first time… Ever? Take some time to try and fix the thing as best I can (not that it’s in my control, but I gave up on the doctors that gave up on me and stopped going to their appointments… Stupid, but I was scared to depend on people who had let me down.)

I might even get a chocolate labrador puppy (I can’t take my dog away from my family, even though he literally is my dog… my little brother needs him) and eventually get it trained as an assistance dog (my grandparents are willing to try and help fund this). I’ve been wanting to do this for a while (actually dreaming about doing so for months), but my parents have forbidden me from getting my own dog even though I don’t live with them any more. It was suggested that this would completely change my life for the better by yet another staff member on my recent admission, and after a lot of thought I decided that as well as the emotional support it would also provide, it might validate my existence in the same way my current dog does (and I need that for when uni staff make me give up on the world a bit).

And the thing is (you’re probably going to think I’m a complete poop in 3…2…1…) I’m doing these things for myself. And it feels weird, to think of myself as something worthy of my own attention, as something and someone worth giving a chance and a little bit of time. But I have been given this time, and I intend, finally, to use a little of it on myself, instead of trying to hold everyone else together (who am I kidding I’m going to do both, don’t worry everyone, I am still willing to tear myself into pieces to keep you all whole without a second’s thought).

I hate everything I write (including this blog post and the 103 that came before it), and rarely read back over my writing after the initial couple of hours of it entering into existence, but writing helps me a lot. There was a time where everything I did was for everybody else. In a weird way, when people asked me to publish my work, I was suddenly writing for somebody other than myself. So a few months ago I sat in front of my emails and turned every offer away, in a stream of responses that went a little something like this – no I won’t write for your magazine at this time, no I don’t want to go to your conference and address people about the impact of physical illness on mental health this time round, no I don’t want to give a talk to young people at the minute and if I said yes you certainly don’t have to pay me to do so, I’d love to be involved in your charity but not right now sorry, no you can’t publish that yet because… I’m kind of scared to let it go. Sorry guys, I’m going through some stuff.

Even as I sent all of these responses I thought, wow you’re a selfish idiot. This is what you wanted – you can set the record straight, you can open people’s eyes, you can make them understand, you can give people what you wish you’d had… And you’re saying no. Because you don’t know how to cope with the pressure. (On top of university and the things I was going through and being told about my health around this time, there was no way I was ready to have other organisations outside of my university getting concerned about the lack of work I was producing because I kept almost dying) And so then I stopped writing, because I didn’t feel that I deserved to be able to do it any more. Out of writing, drawing, and sport – writing was the only thing my body still gave me the ability to do. And I never lost the ability, I just sort of felt I had abused it and got lost in a weird cycle of punishing myself.

I gave money to charity the other day because it was something I really wanted to do, not because I felt morally obligated. I want to continue to do so, and intend to anonymously donate to JustGiving or GoFundMe pages – again, because that’s something I want to do, not because I want any gratitude or whatever.

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The first of my charity purchases from the other night arrived yesterday evening. As the dog of a diabetic, my furry rock is totally in support of Diabetes UK. If you want to join him in his awesomeness and support this awesome charity by buying some stuff, then you can do so here

Doing things for yourself doesn’t just involve doing things that benefit your own life – it  involves doing things for other people, but voluntarily, and for your own reasons, not everyone else’s… It’s just incredibly difficult to think about yourself before everyone else, I have discovered. It’s going to be difficult for me to do this, but I like a challenge, and I need a reason to wake up for the next month until studying becomes a thing again.

I Made It. (I think? Potentially? Almost? Maybe not yet)

Yesterday was a date that I have been thinking about for months – 26/05/2016 – the moment when my first year of university was over, an achievement that in itself is a huge middle finger in the face of everyone who told me I would never make it that far, and a bit of a slap around the faces of those who gave up on me long ago and suggested that I gave up and attempted the whole thing again next year. For all of those months, I thought about how it would feel to complete my last exam, to sit in the pub with my friends right afterwards free from exam stress, feeling on top of the world for proving (what felt like) most of it’s inhabitants completely wrong.

And yesterday it happened. Exams were over and relief washed over my course-mates like a tidal wave as they were able to shut the hideous things out of their minds. They went to the pub after their last exam. The had a barbecue in Highbury fields. They drank themselves to oblivion. The It’s finally over! Made it through my first year messages flooded my group chats and social media page… And I wanted to make posts like that too… I had also planned to make a blog post summarising my first year of university, but suddenly I didn’t feel like I had a right to do either of those things.

I spent the day of our final exam in a coronary care unit with bilateral pleural effusions (fluid around my lungs – a thing which at this moment feels about as pleasant as it sounds). I didn’t sit my last two exams. Therefore, exam season is over, but I haven’t finished my first year. I can’t switch off the exam stress, and the outcome of this year is still very much within my control until the first two weeks of August, when re-sits (or in my case, two first-sits… and however many re-sits I have to do) will take place. I have to wait a couple of months longer for the relief and the overwhelming sense of achievement. Don’t I? Or have I actually managed (only just!) to survive my first year? I’m not sure, I can’t figure it out. I couldn’t help but share in the relief a little bit, but it runs alongside anxiety over the exam papers I have yet to see. With the state I’m in at the moment I’m also worried that I might not be fit to sit my exams in August anyway.

Somehow, this still isn’t getting me down. Sure, this thought process and the confusion it throws out makes my mood stumble a little whenever it decides to return, and I do feel a little inadequate, but right now I’m riding another high.

Because I did graduate yesterday. I graduated from the coronary care unit.

I think I’ve at best got only a third class degree in Being human (aka existing) because I’m not too great at it right now, but with some new medications and an increase in my Ivabradine (aka ‘heart tablets’) I was untethered from the 10 ECG leads I’d been connected to for 6 days, and discharged in the late evening.

The porter that made this possible by taking me to the main entrance in a wheelchair, was an awesome individual. He turned out to be from the same area of Kent where my family home is, and after a long conversation about dogs (during which we decided that big dogs are better, because, to quote him “Dogs should bark, not squeak”) and other stuff, he stood by the front of the hospital with me while Padge went to get the car. He’d had heart problems when he was younger, and had been in hospital a few times, so he understood the situation pretty well, and kept wishing me luck. He was also probably the millionth person to tell me that I’m very unhealthy for someone so young, as if I might have somehow failed to notice this (to be honest it’s all normal to me now and I’m not dead yet so I forget that this stuff isn’t ok) In the few minutes we stood talking I’m still pretty sure he’s given me more support than any of the university staff I’ve tried to seek help or guidance from via so far in 2016 (there is, of course, an exception or two. I think.). I feel this is both sad and completely hilarious at the same time.

When I walked through the front door, tired and dizzy, a certain chocolate labrador himself grew dizzy with excitement. He spun round and round in circles before demanding cuddles, and from that moment onwards has refused to leave my side, which is brilliant, because it makes me feel… Incredibly necessary – deep down I think we all want to be missed because it shows that we mean something to someone somewhere. Thankfully the gaping hole of my low self esteem is labrador sized, and the spikes of loneliness and depressive behaviour he exhibits in my absence are easily and only smoothed by my hand stroking his fur – we’re kind of like emotional symbionts (oh dear, I apologise for my biomedical sciences student brain. I am imagining my dog as a mitochondria with a labrador’s face right now… Or the pair of us as an enzyme-substrate complex… Can you tell that I love my degree? Also yes I loved that metaphor enough to put it in bold)

I tried to get a picture of him last night, but either his tail was wagging so vigorously that his entire self was moving with it, or he was running around me in circles so fast my phone refused to focus, or nudging me to get me to cuddle him (which made it impossible to hold my phone still) – all of which stopped me getting a usable picture. Eventually he just sat his entire self on my lap, by which point he was freaking out with excitement to such an extent that it was like hugging that tasmanian devil character from the Loony Tunes cartoons (if you don’t remember that cartoon character then a – that reference is clearly lost on you, so I apologise, and b – you missed out on a childhood classic). He finally settled down once he had managed to wrap himself around my legs and was laying on my feet, but positioned himself so that every now and then he could lift his head to stare right into my eyes in a way that kind of said, Are you still there? Are you ok? Don’t even think about getting up I’m too comfortable. Whenever we made eye contact, I heard the thumping of his tail against the wood floor, and was immediately overwhelmed by ALL THE FEELS.

The situation was the same when I made my way downstairs this morning. And my day is brilliantly summed up by the following images:

“You’re home! Now give me cuddles and never leave me again” Feels good to be reunited with my bestie! Here’s a picture of him completely freaking out, because when you’re this excited and your paws can’t get a grip on the kitchen floor, the only way to be is upside down! He’s such a derp sometimes

 

He isn’t allowed on this sofa, but once he decided he was going to sit on it I couldn’t physically force him to get off, and he refused to move. I almost died at the cuteness when he moved straight onto my lap and went to sleep, and decided any future efforts would be to make him stay like that forever. My mum would kill me if she found out.

In a couple of months I’ll tell you how my first year at university has gone, when I can say so without being a bit of a fraud. I ‘made it’ yesterday anyway, in other ways – I was given much bigger reasons to smile.

Thank you to all the wonderful humans who have helped me keep myself together over what could have been a completely awful few days – every like and comment on a blog post, every message, every phone-call… It made me feel like I mattered, and that I hadn’t been forgotten this time. You all, of course, know who this applies to, but what I don’t think you realise is that thank you will never be enough. I also discovered have the best friends anyone could ask for. The best. Thank you for killing the loneliness that tried to grow within me. I owe you guys the world, but unfortunately all I can offer you is a message of thanks at the end of a blog post. For now… 

Major Minor Victories

It has just occurred to me that my exams start in just over a week, and not only am I completely underprepared for this intellectually (revision was more a firework than a steady flame), but I also have no idea where they actually are. Obviously on campus (one of the few I have to choose from) somewhere… But due to my unique circumstances and allowance of extra time and a laptop, I am not seated with everyone else. Also due to my unique health circumstances, I may never end up seated in front of an exam paper at all (but I’m not letting myself acknowledge that thought for any longer than it takes to type it out).

Yes, today my brain decided to start thinking about the sort of things that healthy people worry about. After a sleepless night of fighting for breath, and eventually arranging the pillows so that I was sitting bolt upright, I was incredibly relieved to have not ended up in the emergency department of a hospital. My heart was beating a little slower this morning, but still fast enough to limit my activity levels. That didn’t matter though. It was an improvement, so I was happy. While I could actually walk, I took advantage of the situation. I grabbed the fluffiest blanket in the house, burrowed into its warmth, and began making revision notes on the histology of the colon (of all places to start the day). It was not long before I hated the large intestine. I felt demoralised that I was so far behind with revision, but I smiled, because the words I wrote were the result of a determination that I didn’t know I had.

I fell asleep goodness knows how many times. I tried to eat things goodness knows how many times (for those of you who know me, you will be aware that at all times I am either eating, about to eat, just finished eating, or thinking/ talking about food. Any less than a meal for two is simply a snack.) I raided my favourite foods from the fridge at various points throughout the day, managed a few bites, and then either fell asleep, ran out of energy to eat any more, or ‘accidentally’ fed the remainder to the dog. A lot of food was wasted. So I gave up trying to eat and went back to revision. I wanted to be the person that I expect myself to be. That person only seems to exist in my dreams, which is good, because I fell asleep again.

I woke feeling like half a person, let alone half the person I hope to be. Even so, I picked up the pen, opened my textbook (histology of the liver this time) and began to write again. In a way, I revised to stop myself thinking about the appointment yesterday afternoon;. I wanted to distract myself from that reality and wrap myself in something that demanded all of my attention, so none of it was left to drift to the places that I’m not strong enough to go right now.

Today I stayed in my pyjamas because getting changed was too much effort. People’s response to me was “You look awful!” or “Should you be in a hospital?” (Probably? Maybe? But it isn’t going to happen unless I’m actually dying). But last night I was so, so much worse (enough to actually consider going to hospital). So, in comparison, today I’m brilliant. And I didn’t see that coming. On the grand scheme of things I failed a lot. If you look back at the last few weeks you might argue that I failed at everything I aimed to achieve in terms of revision and… Many other areas. But today was filled with minor victories. And in my state, they became major victories.