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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Bite Me.

The last couple of days have been something comparable with the lovechild of a hurricane and a rollercoaster… on steroids. Life’s favourite time to kick is when you’re already down. And yet… the kicks don’t even hurt any more. Not at the minute. There is no capacity to hurt, and when there is, there is no capacity to hurt any more. I’m starting to vaguely feel – not fully and not properly, but at least a bit more consistently.

This is where I’m going to make a weird request, because (unusually) I remembered that a handful of people are going to read what I write here. Specifically, that concern is about the 2-3 people reading this who met me before they ever read any of these posts. If you met me before this blog existed… Please don’t read the rest of this post. Not yet, anyway. I kind of… It isn’t something I want people who know me like that to really find out in a post, I think? I’ve chosen not to really talk about it to people I know yet, because hey it’s probably nothing, and I know I can’t stop anyone reading on, and that asking you not to builds a whole lot of intrigue. But please hang in there for a while. 

I mean… Now I continue, I guess.

I had a hospital appointment yesterday for a totally new thing. It isn’t new to me, but it’s the first time I’ve actually had it looked at. Long story short, earlier this year I started getting minor nosebleeds from one nostril. Then I noticed a small lump. The lump grew, the nosebleeds got far more frequent and much worse, and now there’s a constant trickle of blood down my throat and every hour or two, a red river all over my face. The lump now obstructs my entire nostril, is hard and has a bunch of blood vessels over it, and has recently changed in appearance. The back of my mouth has started to feel weird, and on the same side it looks a little different (like red and weird). I decided it was nothing, and certainly that something as pathetic as my nose wasn’t worth bothering anyone about. But I mean… It’s A LOT of blood now. So I went to see an ENT consultant, who was the first person I told about it to decide it may be a good idea to look at it.

He had an appalling bedside manner and was blunt and clinical and methodical, which I liked. He sat me in front of him and  looked at it, without saying a word got some equipment and briefly explained what he was going to do before he stuck a camera down my other nostril and into my throat, and then looked into my mouth… And then we sat across from each other at his desk and he looked up at me and without any build up said

Unfortunately there’s no treatment option other than surgery. We need to remove the mass and the underlying cartilage. Do you have any questions?

Yes! So many questions! But all I could say was… Is that going to hurt?

It’s a something-I-can’t-remember-because-I’m-half-asleep-oma, he thinks. Now I mean… Part of me had been expecting this little lump to need to be removed, but a much larger part of me thought I was going to be laughed out of his office, or maybe he’d make it bleed and just cauterise whatever bled and send me home all fixed. I did not expect him to say that there was a whatever-it-is-oma with exposed cartilage that is on/adhered to the nasal septum. Like… Surely exposed cartilage should… Hurt? Anyway he wanted bloods there and then, and a CT scan ASAP. He said he’d phone with the results. But when we went to book it all, we said I couldn’t do the scan until I’m back from uni. The first day I’ll be back for is the 19th. The scan is the first slot they have on the morning of the 20th of December. That’s… A lot quicker than I was expecting them to arrange it.

My mum and I then went for lunch, because she said that this time I had been “ok-ish” to have around. I didn’t want to go back – the whole way there I was dreading it, and she didn’t really want me to leave either I think. It was nice. We stopped at a random pub chain and ate some super nice chicken. And then we drove back to Mile End. And I was in this car that I knew was about to drive right back to exactly where I wanted to be, but that I wasn’t going to be in it when it got there. My mum pulled up outside my accommodation, got my stuff out of the car, we said a brief goodbye, and then she was gone. I hate that there’s nowhere to stop where I live. Goodbyes aren’t proper.

I went back to my room, let the door swing shut behind me and… Sobbed. I just sobbed. Uncontrollably. The room was so isolated. So… Not a family home.

And then my mum called to tell me I’d forgotten something, and I couldn’t stand speaking to her because I just wanted to go back to my dog and stuff. Same Cardiologist Uni Friend called me up and talked to me for a few hours. My plan was not to talk about my stupid nose until I know about it for sure and stuff. Oddly, I’m not phased by the thought of surgery or anything. I thought I would be or should be, but y’know… I don’t know whether it’s because I feel so ridiculous about it being my nose or whatever, but this one just doesn’t feel like something to sweat over. If the lump is harmless or has the potential to stop being harmless or if it isn’t harmless at all, the treatment is the same – get it out. I’m up for that – just get the thing out. It’s annoying, more than anything.

But anyway I was crying and I was like I don’t think I can do this. I didn’t know how to deal with anything, even for a day. I ended up almost falling asleep on the phone to my friend, and saying stuff that made no sense because I was falling asleep, so I let her go and cook her dinner and curled up fully clothed to go to sleep. My sleep was broken, it always is, but if you discount the 17-18 times I woke up or got up to treat my health hiccups, I slept from 7pm round to 9am. I was so tired.

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I did find time to tidy up and try to make my room look a little Christmassy. It isn’t much but it’s the best I could do.

And then I went to my hospital appointment. And as I sat there by the Christmas tree waiting to go in, I checked my uni emails, for some reason. And they are STILL trying to find ways to kick me out. Except this one may work, but is also ridiculous. They are getting the national crediting body (external to the university) involved, because I missed lab sessions so they are saying I might not have demonstrated the lab skills needed to become credited as a biomedical scientist. So many thoughts. Firstly, we do the same procedures in every lab – spectrophotometry, micropipettes, serial dilutions… It’s basically the same. The labs I’ve missed… Some were on the computer, one the theory was done at home… I’ve done all the skills before. To death and back. In fact, I’ve probably carried them out while literally dying. Secondly, there are people on our course who have never been to a single lab because they can’t be bothered. A couple of weeks ago, someone asked us where we are meant to submit lab reports to and how we went about it, because, half way through the first semester of his SECOND year, he had NEVER been to a lab session. Thirdly, why did nobody tell me that at the end of first year?

As if that appointment wasn’t bad enough.

I walked in, and we started talking. And she told me this story about this boy who didn’t look after his diabetes and didn’t think it would kill him but was warned and warned, and then died. Except she didn’t tell it like that. It was more emotive. And I was like… I have so many things to be scared of. And I told her about my heart being more of a pain in the butt, and my kidneys being a pain in the butt, and how I hadn’t told anyone about either of those things. But somewhere before that, or maybe during it, I just broke down. I don’t cry. If I do, it isn’t in front of people. It certainly isn’t in front of health professionals. And I just couldn’t stop. I will elaborate on why and what I said at a later stage. But out 45 minute appointment ended up going on for over 3 hours. She pulled her chair out from behind the desk and moved it so our knees were almost touching, and she leaned forward and we just talked. About it all. About all the things I couldn’t face. About how screwed my body was. About what triggered my PTSD. About where I wanted to go (in terms of a treatment plan or whatever) and all I could say was I don’t want this any more. I don’t know how to deal with it all, I just can’t cope. And she’d stop, and we’d go back, and we’d go through a whole other thing like my weight loss or fluid retention or mental health or whatever else until we ended up right back at that point. She was patient.

Anyway. I got to uni campus at 2 and sat with Same Cardiologist Uni Friend and Italian Uni Friend (two people then knew I was back, which hadn’t been my plan). I had an assignment due in at 5 that I hadn’t started. I got quite a way in, and then my computer restarted and I lost even the stuff I had saved. Life isn’t giving me lemons, it is squeezing them in my cuts. It felt pointless anyway, in light of everything else on my plate, especially as all this work may literally be for nothing now.

I concluded that the only state in which to submit my assignment would be on fire… Because that way it could never be marked, and I’d save everyone else by destroying theirs too. I was just over half way through when the fire alarm went off. I sat there with less than an hour to go and 1/4 of the thing still to do like well at least if I burn to death they might go a little easier on me. 

I was trying to care, and it just didn’t matter. Until eventually I started to focus on it instead of the everything else in my life, and putting the tiny amount of importance I could spare onto my coursework distracted me as we watched a guy try to turn his canal boat and have a crash in Regents Canal (right by the window).

I finished the thing on time. Same Cardiologist Uni Friend had to print it on her account because I forgot my student card. Italian Uni Friend had to  staple it because I couldn’t get into the library. I submitted the thing, and then I stood in the middle of the emptying science building, held my arms up in victory, looked up through the opening in the ceiling of the lobby that showed the first floor lab, and just shouted (completely out of the blue, taking myself by surprise)

“BITE ME”

Then three of us went to Stratford Westfields, where I bought a large meal in McDonalds, accompanied by a free Crunchie McFlurry (because student perks)  after I realised I hadn’t eaten all day and it was 6pm and I felt I needed something good after my day (not going to lie that’s the only reason I went). It was so cold out and I had only left the house wearing a jumper, so by the time we got there I couldn’t feel most of myself, my hands seemed to have so little blood in them they looked rather alarmingly alien, I was shivering violently, and got electric shock pains in my legs if I moved them beyond a certain point… So I bought a super cheap ski jacket… And 2 jumpers… And a Christmas jumper (all for under the price of a jumper in any other shop).

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Christmas at Stratford Westfields shopping centre. Maybe I should make it my aim to see a different part of London at Christmas time every day…?

I went Christmas shopping and got three things for my little brother to make up for not getting him a birthday present. I bought myself a book entitled Death by Stupidity – 1001 of the most astonishingly bizarre ways to bite the dust because I wanted to feel better about the fact that I’d nearly died a lot and… It hadn’t been in ridiculous ways. It’s a pretty funny book (also, people die in really, rally stupid ways).

And then, because I felt like it, I bought myself a second dinner – an AMAZING pizza.

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Only two slices of this beautiful thing made it all the way back to my flat.

And now this post, that I mostly wrote on the other side of midnight, but that will now be posted today and probably make no sense (just imagine that every “today” is actually “yesterday” i.e. the 1st of December).

Tomorrow lectures, then straight to another hospital appointment, then straight to an assessed lab session, which means I’ll have another bit of coursework due in another week. One of my friends is already fully into a revision plan already. Everyone else I talk to only has a maximum of 7 weeks of notes (and that person was only that far in for two modules out of four). Everyone is as behind as me (I have notes in lectures until about week 5, handwritten final notes for… Week 1). And they’ve been out in the real world living life, so that makes me feel a bit better.

Whoa this is way too long. I’ll stop. Bye. I mean, it wasn’t even that bad. It’s just been full on, especially with starting to feel a little bit.

Time for another dinner. At 00:20am. Like I said, bite me.

I Never Thought I’d See The Day

I don’t like bothering people. I’m always terrified that people will walk away from me due to my health (because so, so many have) and it stops me burdening the friends I have now with the reality of the situations I end up in. I play things down, and when I’m in hospital few people usually know. My absence is not often noticed – people don’t message when they notice I’m not around, and I wake up to an empty message inbox on my phone. The people who do know have no idea how lonely I am, and have no idea that I’d sit and watch them walk past the hospital to go to lectures at the medical school. They had no idea how much it hurt to know they couldn’t be bothered to cross the road for me. But I can’t blame them. It just made me stop talking. Start hiding.

I never thought I’d see the day when I had the kind of friends that I have now. I handled things differently this time, I gave them a chance. They handled things better than I ever thought a group of 19-20somethings would. And I am so touched and blown away with their support and responsibility that I want to mention it here. I kind of just want to say what my friends did, how they acted, and how much it means, because I still can’t wrap my head around the fact that they care so much for so little reason (the middle bit is kinda boring, but the end is the bit that really really gets me).

WR Uni Friend took me to the hospital, and after I became too unwell for her to stay in the resuscitation unit with me, she sat in the waiting room for hours. Uni Pal joined her, sitting there for hours and leaving before I was “with it” enough for people to be allowed back to my bedside. They both appeared together later (Uni Pal brought refreshments), and stayed with me until the early hours of the morning when I was moved to a ward.

In that time, Uni Babe had messaged me to ask if I was conscious, and, getting no reply, concluded that I wasn’t. She’d known I was heading to the hospital, but had no idea when or if I’d made it, and apparently had visions of me lying in a ditch slowly dying. She called my accommodation (multiple times because they kept hanging up on her) and asked them to go and check my room. She then called the hospital and ended up on a wild goose chase of phone calls until she found out I was in A&E, at which point she calmed a little.

Something super weird happened. My phone filled with 18 messages as I laid there almost dying, and when I was with it enough to be able to sort of see and had the energy to hold my phone, I almost cried. I’ve never had that. Ever. I’ve never had people hear that I’m in hospital and care enough to message. News seemed to have spread a little among my close friends, and their concern was evident. It made me feel guilty, but it also moved me beyond belief.

Normally I’d have simply replied that I was fine but in hospital. One of the doctors told me that people needed to understand what had happened so that they could be there to support me in the way that I needed them to. He wrote a very long message in the notes section of my phone, and told me to copy and paste it to anyone who had messaged me as I laid there, when I was able to see well enough to read again. And I… Did. The next morning, I sent that message to anyone who had messaged me. I was honest with people about how bad things had been. WR Uni Friend had no idea, and had the night before been telling people I was fine (clearly she had no idea of the situation, which kind of makes me glad because she would have worried).

People decided to visit. My closest friends knew I was scared of hospitals but none other than Uni Babe could comprehend the true level of the fear. Even so, they decided that they didn’t want me to be alone, and I woke up the next afternoon to find WR Uni Friend and Uni Pal stood at the end of my bed. They brought chips  from the fish and chip shop. WR Uni Pal brought me her women’s rugby team jogging bottoms because I didn’t have any pyjamas. They sat there and did uni work. I tried to stay awake and thanked them over and over because I was so touched. After they left, HK Uni Friend appeared with a bag full of my favourite foods, and a bagel and some pastries from the 24 hour bagel place in Brick Lane that we often go to late at night. She didn’t want any money, and had clearly been on a hunt around some shops. It was all so surreal and I still can’t believe that people were so nice. I don’t understand it. It’s just me… But it meant the world. It meant THE WORLD. For the whole of visiting hours, I was alone for ten minutes.

The next day, Uni Babe showed up at the start of visiting hours. After a few hours, Italian Uni Friend and another uni friend who I’ve only known 3 weeks (the one who was just referred to my cardiology consultant) showed up, and they stayed for a couple of hours. They brought me food too. But most amazingly, they brought themselves, and I was so stunned I kept thanking them and asking why. By this stage people were just telling me to shut up. My old friend from sixth form turned up shortly after they departed, with a hot chocolate. She stayed until way past visiting hours. I sort of pushed her into sending and email to get some stuff sorted, and she’d brought me some adult colouring sheets from a little booklet on PTSD and nightmares and stuff that she had which had a list of grounding techniques and stuff that she thought might help me. Anyway I’ve made my point – I had a lot of visitors. People were just so thoughtful. I really don’t deserve them.

Another huge thing was the fact that I made a group chat specifically to update people about the hospital situation. People kept asking, and messaging was so exhausting that it was easier just to post to them all at once. A couple of extra people asked to be added. I don’t normally update people on stuff, but it was actually really good to have their support, and everybody wants me to keep the group chat so that if I end up in hospital again I can easily let them all know. I don’t usually tell people stuff. I don’t usually say what’s going on. It was weird to actually do that. But it helped me, and I knew that in a group chat all my friends could support each other through whatever I told them, which made it easier for me to tell them how serious the situation got.

I also messaged Auntie Godmother, and called my grandparents to let them know. My parents never usually tell anyone, and they don’t want me to tell our family members if they haven’t, which often really annoys my family members when weeks later they find out how unwell I’ve been because I see them and just sort of mention it. This time I didn’t ask for permission. I didn’t care. I’m 20. I don’t live at home. It’s my life and they are my family too and they had every right to know. My parents didn’t even tell my little brother I was in hospital, and I needed to not feel invisible in this family any more. They deserved to know. Auntie Godmother is like a second mum to me and when she told me how much they love me (in response to me getting all slushy and telling them how much I love them and that their house feels like my home) I felt all the feels.

When I was let out of hospital, Uni Babe and Portsmouth Uni Friend sat in my accommodation with me for a few hours because I felt weird and told our group chat that didn’t really feel safe to be alone. Uni Babe helped me pack my bags up and carried one of them out to my mum’s car when she showed up. She calmed me down when I lost my cool at the sight of an ambulance. And she had the best idea anyone has ever had. She’d been thinking a lot, because the situation on the day of my admission had made her very uncomfortable. She started talking about finding a way to know where I am. She’d really been thinking about it – she mentioned bracelets that you could just press and they called 999. She mentioned tracking and stuff. In the end she posted on the group chat suggesting that we all downloaded an app called Life360.

It’s a tracking app with a group chat feature, which shows other people in your group an accurate location of where you are (each person pops up in a little bubble and it shows an exact location on a map which also shows a satellite image if you want). It also shows them the battery level of your phone, and whether or not your GPS is turned on etc. so that people don’t freak out if you don’t reply because your phone is dead or whatever. It lets you ask people to check in, and you can set it to send a notification to all members of the group when you reach a certain place. She wanted us all to download it so that if anything happened to me they’d know where to direct help to, and who was closest to me (I mean. HOW. Mature). I thought that would be a super bother, especially as the others might not have wanted their direction broadcast to us all, but six or seven people downloaded it and joined the family group Uni Babe had made (in which I am named simply as “Superhuman”). One person who wasn’t in the group chat even asked to join our family group thing on the tracking app when I told her about what a great idea I thought it was. I’m not sure how I feel about such an invasive thing  (MOVED BEYOND BELIEF but also a little stalked), but it is a really good idea, especially if I go for a run or whatever or something happens to me. I’m super impressed at how responsibly and practically my friends were thinking though, and how committed they seem to be. It’s so, so strange to me. I feel like we’re properly adults right now, I feel like I have an extra family. I cannot believe I have friends like this. I never thought I’d ever have that and I’m still terrified that like everyone else they will walk/drift/be pushed away. I’m scared of that. I’m scared to settle into the comfort of their awesomeness because they are so incredible that I know I don’t deserve them and I dread the day they realise that.

I never ever thought I’d have friends like this. Ever. And weirdly enough they seem to think I’m a good friend because I keep asking about them and trying to be there. They say it’s touching. But until they’ve experienced the kind of friendship that they provide, they don’t know the meaning of the word. I honestly can’t believe people care so much about me with no reason to. I still can’t understand it, I can’t accept it. It makes me feel unnerved and weird and guilty… But I like it. I feel like I matter a little.

I handled things differently this time and I felt like such a bother. But my friends handled it differently too. They were beyond amazing.

I never thought I’d see the day.

Worth It

I did that thing where I stay awake all night again. I was so stressed about my coursework that I stayed up until 4:30am to complete most of it, at which point I was relaxed enough to consider sleep, but decided there was no point. I had a brief moment of calm, and I sat on my bed and just let the dust inside my mind settle around me until I could see clearly.

If you read what happened last time I ran, then you’ll think I’m completely stupid for what I did next. If you understand what running does for me and how much I miss it, then you’ll also understand why. I took a chance on my body, the morning after it had plunged me into the early stages of acidosis.

I was up and out of the building before 7am. I stood outside the tiny supermarket next to my accommodation waiting for the staff to unlock the doors, wearing running trainers and running gear again. I was so dehydrated from the short walk that my mouth was dry. I bought a litre of drink and quickly drank an entire bottle. It was cold out. So cold that by the time I got to Mile End Park I was shivering. It was still dark. There was hardly anybody about, and I liked that, because there had been so many runners about on my previous attempt to run. I found my little patch of grass, I opened the timer on my phone, and I jogged much more lightly than before. 30 seconds at a time this time (10-20 seconds wrecked me last time but that was not going to stop me progressing with the running plan). I couldn’t help it. I needed to. I didn’t know what else to do. And sat here afterwards, I can’t think what on earth it was that was breaking me, because I feel like the weight of the world has been lifted. Most of my friends aren’t even awake yet, and I’m sat here at 7:30am with my hands feeling tight and like they’re burning as they slowly warm up and regain feeling.

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Bottom left: Walking through the park in the dark. Bottom middle: “My” field/ running track. Bottom Right: On my way into the park the canal looked kind of like a mirror (there were a lot of sleeping ducks too). Top: Took that photo as I was typing this post. Watching the sun rise again – I beat it this morning! 

After the first lap of 30 seconds, my vision went. I couldn’t see the huge numbers on the timer, and this presented an issue, because I then noticed that everything else was blurring, and the lag in my vision was much worse than normal. I decided this was probably mostly due to the almost acidosis situation that I’m stuck in. I decided I’d stop after five times. It didn’t kill me. It felt good. Every time I blinked my vision stayed black for a while afterwards, and I started to feel light headed, but not enough to alarm me this time. On the last lap I was running and my legs just gave out under me as everything went black. I managed not to hit the floor, but decided it was definitely time to stop. I felt my pulse, and it was stupidly fast, with random forceful beats between beats so faint I could barely feel them. As I walked home it hit me. There were huge gaps in time, every time I blinked, everything turned black for a while. I felt significantly lightheaded by the time I made it back to my floor of the building. I drifted along the corridor bumping into the walls, and fell straight onto my bed.

I’m feeling more and more like I’m going to pass out. I feel sick and I have a foggy headache. But I can handle today now. I can handle uni and work and going home and all of it. It doesn’t bother me like it did before I stepped outside. I no longer want to run until my heart explodes. I no longer want to bail on my own existence. Because for 150 seconds (ok add about 20 to that) I ran. That’s all it took. And it’s given me so much. My friends will be annoyed. They’ll call me an idiot. My mum would shout if I told her. But I left myself three hours before lectures this time, and I didn’t know how else to handle things.

Sometimes the things that are good for us are also bad for us, and sometimes we take the bad just so we can take advantage of the good. My body is rebelling now but it is going to rebel anyway… May as well enjoy something. May as well reclaim a piece of my life. So I ran. But I wasn’t running away. I was running towards something. I was running for change. The immediate change seems to be that I’ve outraged my body (but not to the same degree as last time). But it’s also transformed my emotional state rather brilliantly.

After my last run, I thought I’d never run again. The aftermath was horrible and terrifying to be honest. It was my body telling me no. But I’m the kind of person who gets up and tries again even when the odds look pretty hopeless. Odds mean nothing. They are often defied. I decided to carry on with my plan and increase the duration of running, I just cut the repeats. And I took a chance. I don’t know what I expected to happen. I am, for some reason, surprised to find myself sat here drifting towards unconsciousness, and yet at the same time I fully expected that and it’s just part of my running routine. Hopefully I won’t pass out in lectures today. I should probably ask someone to run with me in future, but I quite like the time to myself. When I’m running, my mind is quite a pleasant place to be for a change, and I like the room to just… Breathe.

The trees are starting to turn the rich colours of autumn as the seasons change. It was so cold I could see my breath, and my hands felt like two useless stumps on the ends of my arms because my fingers were so cold I couldn’t feel them or really move them. It was so, so cold. And it was so, so good. I love wrapping up warm and my heart doesn’t like the occasional yet intense heat of the few days of summer Britain experiences throughout the year. It was refreshing on so many levels. At one point I just stood there looking up the sky like a compete idiot, and suddenly the early morning sun shot light into the sky and a flash of orange appeared through a break in the clouds like the sky was on fire. I liked that. I’m forcing my body to let me be the person I want to be, to have awesome experiences like running before the sun comes up…

I have just as much to do as I did yesterday, but it isn’t breaking me any more. I’m not stressed. I’m super spaced out but it kinda feels ok. I also feel a little bit superhuman. Just a little bit.

I might go and sit in the library and try to get some work done before my lectures today.

There was no way but through.

Trying To Get It Together

I kind of knew my day was doomed when I woke up an hour and 33 minutes late, having slept through over 12 alarms.

Around 10 days ago I took a huge step and arranged an appointment for 9am today with a psychiatrist. This was a big, big deal for me. I know it doesn’t seem like anything significant, but to me it really was. I found myself melting down on Wednesday because I felt like a burden to everyone and everything and among other far more alarming things, I wrote in my journal, “I don’t know how to handle everything […] My life feels like a void. Will it always be so difficult? Will it always involve so much trying? Will I ever find someone or somewhere?” I couldn’t see a way forward and I couldn’t see a way to tolerate my own presence on the planet, and couldn’t understand how or why other people could.

“But what if I’m never thrown that bone?

And what if this tear in my side

Just pours and pours and pours?

I wonder if they’d notice that I’m not around

The loss of a lonely man never makes much of a sound” – Frightened Rabbit, Yes I Would 

(My phone spat out the above song while I was on the train home from Auntie Godmother’s. When I ran the day before that, it played This World Is Yours by Adam Martin – which is super motivational)

I’d say that what changed that outlook was a psychiatrist. But it wasn’t. It was Uni Mum. I met with her last night for the first time in months. We went to the pub. We had drinks and I ate food, and I talked openly and honestly to her because she’s the only person on the planet who I can be myself around and let everything out to. She understood (and related to) hating myself. We laughed between the serious moments and we talked about things I’ve been unable to even let myself think about. She could read me like a book, I couldn’t hide anything, and even when I resisted I was so comfortable in her company and so desperate to just let it all out that she won anyway and I told her it all. I always always feel like a bother and she knew that because she knows me better than pretty much anyone else that ever existed. She said she was there because she liked me, that she’d been told to steer well clear of me but that was never going to happen (it kind of did for a few months…). She rolled her eyes when I said the two words that both uni parents banned me from saying (“thank you” and “sorry”), she knew I’d send her a message saying both of those words after we met, and told me she’d respond with “hahahahahaha” and several swear words. I told her she had no idea what she’d done for me. She said the same to me. After 2 1/2 hours we parted ways and I hated walking home to be alone, but I felt better about my existence.

The reason why seeing a psychiatrist this morning didn’t change that outlook is because… I never saw a psychiatrist.

Background: I was already stressed. HK Uni Friend went to stay with her family in Paris a day before her coursework was due in, and needed the extra day to complete it. She decided to leave me her half completed coursework to submit, and gave me the responsibility of printing the other half from an email (I don’t have a functioning printer, and I was immediately stressed out at the idea that it wouldn’t send or print or something). I then had to attach it to the rest of her coursework and submit the whole thing. This was so much pressure and so much responsibility, and she didn’t seem to understand just how much the responsibility of looking after, assembling and submitting someone else’s coursework was stressing me out. There was an assumption that I’d definitely be able to submit that, and as I woke up to heart palpitations in Aunty Godmother’s spare room, I wondered if I’d even make it back to uni, let alone to my own lab session today (we got to play with starfish. It was so cool. They were from a coastal area of Kent that I visited often). I always stress about the fact that I may miss out on uni due to my health, or miss submitting my own coursework or attending my own lab due to health issues… I freak out enough over that. Adding the pressure of being present and functioning for someone else as well and I was just tearing myself apart with the stress. Stupid. No need for it. But it was there.

Further background: I hate being late. My parents taught me never to be late, and I’m usually stood outside (or sat in) my lecture theatres 20 minutes before the lecture starts because I’m so scared about being late that I overcompensate hugely to chill myself out. I get so stressed about being late for things. I had an appointment in Commercial Street at 9am. Between me and Commercial Street was a five minute walk from my room to the tube station, 2 stops on the central line to Liverpool Street, and a 10 minute walk. I messaged the number that the psychologist had called me from to tell her that I was running late. She’d said that she would email me the address of her clinic or whatever, and after 10 days still hadn’t, so I asked her for the details of where to go.

I reached Commercial Street at 5 minutes past 9. And I’d still heard nothing. I called. I messaged again. I went through every single email form the last 10 days (multiple times). I emailed her again. I looked on the website that had put me in touch with her and she hadn’t posted an address or marked her location on the map like everyone else had. My mum had told me that she was probably a con-artist and had somehow managed to convince me that I was going to meet a serial killer. I was getting later and later. All I could think about was HK Uni Friend’s coursework and when I was going to find time to go home and grab it.

Long story short, I ended up sat in a bus stop for 40 minutes until I was so cold that I couldn’t feel my hands to message any more. I called and called until the number stopped ringing with each call. I emailed. I messaged. I hated myself. And I hated myself. And I decided I was a huge screw up who could do nothing right. And into this very destructive spiral my mind went, until I was sat there freezing cold, trying not to cry.

Eventually, feeling completely awful and 100% blaming myself, I left the bus stop and headed back to the station. My eyes were brimming with tears. I cried but those tears never fell (if that even makes sense). I stopped in a shop and bought food and drink (I was so dehydrated that my tongue was stuck to the roof of my mouth and my lips were stuck to my teeth – which is ironic seeing as how since my run I’ve completely puffed up and ballooned with ascites and excess fluid generally everywhere). I then stopped in a café and bought myself a baguette, kind of crying into my phone as the cashier stared at me in alarm. I at in Liverpool Street Station because I just couldn’t handle the idea of heading home. I didn’t want to go anywhere or do anything. I got a grip eventually, and headed home with this horrible heavy hatred of myself sitting inside of me.

Blah blah blah… Met Uni Babe (who freaked out at THE IDEA of being responsible for handing in and assembling someone else’s coursework), headed to someone’s flat for a surprise party organised by a group of friends who are so sweet (I don’t really hang out with them much, but I joined them all anyway because I’m all for putting myself out there at the minute). I struggled to stay awake. It was so embarrassing. The person whose birthday it was started chatting and then mentioned that she’d just started seeing a cardiologist because her heart occasionally beats a little too fast (but in a normal sinus rhythm). She said she saw him at the hospital where I see my current cardiologist (the only doctor I’m willing to see right now, because hey I want to run). I spoke up, and it turned out we see the same consultant. WEIRD. SUCH A SMALL WORLD. She is as interested in cardiology as I am, so we walked back to campus together chatting about hearts and how fascinating they are (such nerds, I know) and she asked if we can meet up just to chat away about cardiology. Erm… YES!

I had a small meltdown because I genuinely didn’t have enough time to go and get HK Uni Friend’s coursework from my room. I was almost late for my lab because I went back to mine to get it. I didn’t have anything I needed for the lab. We were meant to print the entire booklet. I hadn’t. I hadn’t even looked at it. I was falling asleep, and I was drinking and drinking and puffing up like a balloon but my mouth was dry. For a few hours we stood looking at slides of starfish under a microscope. Then we held them. Our lecturer had discovered and named the neuropeptide we were studying, which I found so cool! Seriously, how awesome would it be to be able to say something like this?! I’m often in awe of my lecturers and their achievements. I turned to Uni Babe and decided that I’m going to see my cardiologist and actually be honest about my attempts to exercise in hope that he can actually help me get back to exercise…

Then I went home and changed into running gear. I wanted to run. I didn’t care if it killed me (I think a small teeny tiny part of me hoped it would, but that wasn’t why I wanted to run, just a potential happy accident). I just wanted to be free like running makes me feel. I wanted to be happy. (Uni Babe told me that running three times a week has the same effect as taking an anti-depressant every day. I can see how that could be entirely true). I woke up three hours later dressed ready for a run. All I could taste was the unmistakable tang of acidic bodies (ketones). I was in the start of acidosis (I’m always in the early stages of acidosis at the moment. Have been for over a week. My body has adapted, but today it gave up). Suddenly my all day tiredness made a lot of sense. I had a huge problem, a huge lack of motivation, a complete incapability to face the problem, and a huge desire to go for a run. On top of that, my own coursework is due in tomorrow, and I’ve been feeling so awful over the past week that my brain just can’t even, so I am currently in a huge panic about that too.

I injected into veins. I drank 4 litres of fluid because I was so thirsty I couldn’t not. I stared at myself in the mirror – at least I didn’t look unhealthily thin now that my cheeks have puffed up a little and my stomach has ballooned so that I look pregnant. I didn’t know how to deal with everything. Like… I can’t even. There’s so much I need to do. And I’m going back to my family home for the weekend (which I know I will regret, but I miss my dog so much and I miss being around other humans – even if I know the company I’m in will be awful for my self esteem… I also know that after being there, coming back home to an empty room will be so much more difficult… Although my little brother may come back with me for a few days and we’re so close now that we live apart – we talk for a couple of hours 4-6 times a week now!)

I’m stressed beyond relief for such stupid, stupid reasons. But the thing is, life goes on. Time keeps moving and the world keeps turning. What feels like everything isn’t… And yet it feels so important that I’m struggling to handle everything.

I did meet a first year who is having a worst first year than I did, but that’s another day.

And my old journal/ notebook got filled up, so on the way home from Auntie Godmother’s yesterday I stopped in Embankment Station and bought myself a new notebook to try and start over. I’m trying so hard to get out of the rut I’m stuck in.

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Left: Old. Right: New. I shall aim to be super like the animals on the cover (and at the bottom of every page) of this notebook. People call me superhuman because they are convinced I should probably be dead already… But I’m really not… And I kind of want to just… Be able to handle life. This is my attempt to get a life or die trying. Probably because the first three pages are filled with an 11 week running plan… 

Sorry this junk went on so long.

I’m really really trying. In every sense of the word. Today wasn’t even that bad, it’s just the tip of a very large iceberg, and it was topped off with the grim reaper calling my name again and I don’t know how to stay out of his company. I can’t university right now. I’m such a poor excuse for a student. Compared to everyone else I can’t put in the work and I’m so inadequate.  Maybe I should leave? But no. Not doing that. I don’t even… I can’t even… What even am I saying/doing? I’m rather pathetic right now, forgive me.

I just got a message from HK Uni Friend saying she randomly went for a 5km run and it was surprisingly easy, and honestly, for reasons that if they aren’t already clear then I don’t know how to explain… It felt like being shot. I’d love to just for the sake of it go for a random 5km run through Paris, and for it to be so easy that I could message people telling them. I’d just love to run. I’d just love to be a little more healthy, just for one day. I don’t mean to be ungrateful, just today I can’t even.

No way but through. Somehow. I hope.

I’m trying to get it together, I promise.

I just have no idea what “it” is…

 

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.

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.)