Rebellion (in the form of a small adventure)

There are various rules to life with a femoral line. Most significantly – do not leave the building with one in place, preferably not even the ward unless you’re going for some sort of medical procedure or y’know, the place is burning down.

With a thick line peeking out of my femoral vein and into the real world, and 4 lumens which each branch into 2 (yes, I seem to have been connected to that much stuff) – it looks kind of like a tree protruding from my groin and spreading its branches all the way down my thigh. It’s anchored in place with two very loose stitches which pull every time I move my leg, and after a week, the insertion site burns and stings and is painful.

I decided that yesterday was going to be the day of my departure in the middle of a long and sleepless night during which I would have ended up near death if I had obeyed the instructions of doctors who cannot communicate, had little urgency, and seemingly not a single flying (insert appropriate rude word here) to be given.

I spoke to my community nurse this morning. She called me on her way into work and we discussed what had gone on.

Dr Survival appeared yesterday morning. He asked me what had gone on the night before, and he knew I needed to just… Speak. He said it was ridiculous that I’d been told not to listen to my nurse’s advice, and that I should keep regular contact with her and listen to her advice regarding medication doses and things as she communicates with my consultant (providing a link between him and I when he isn’t at this hospital and stuff) and knows me and my case better than any of the staff here. We discussed the confusion over the injection that keeps me alive – how I’d been told it wasn’t signed for so I hadn’t been given it, and didn’t really remember giving it, and the doctors had gone against consultants instructions and decided that I didn’t need it without wondering why it was written up in the first place, and how I was then told later in the evening that I had been given it after all. The doctors said no, it hadn’t been given. It was documented nowhere. I then said that a repeat blood gas was meant to be done in half an hour, and the doctor had strolled into the room 8 ½ hours later ignorant and arrogant and clueless.

I told him just how much medication I had had to sit in the bathroom and inject into tiny veins between my toes like a druggie. I told him that I’d been told not to give any medication at all until I’d been seen by a doctor, who I was told was probably going to start me on the IV medication I needed to save my life, but who turned up hours later with not a care in the world, so laid back he may as well have been horizontal. I pointed out that I had been told off like a child for giving medication – multiple times the amount that some people give throughout an entire day, because that’s how much it took. I reminded him that my pH had been 7.35, and that if I hadn’t taken action myself I’d have been in a situation. He said “oh undoubtedly so” and basically admitted that I had saved my own ass. I reminded him of the incident last December, where I was given none of my medication for 18 hours after being told I needed to be here so it could be given intravenously and my butt could be saved. It was the first time we met – me losing the ability to be able to draw in breath, dying in front of him, somehow holding on. I told him it had happened again. I told him I had a secret supply of needles and injections and medication and knew he was meant to tell me off and lock it away with the rest of my drugs but he didn’t, he told me to use it and just tell him what I’d done. He told me to take full control, to do what I knew needed to be done. We agreed I’d be safer that way.

I told him that I would be safer at home, and that I wanted to leave. He quoted some of my blood results at me, and gently suggested that leaving wasn’t the best idea. I said I wanted to go. He looked at me (his eyes are kind of piercing hazel and always hypnotise me) and kind of pressed his lips together sympathetically, shook his head, and said he couldn’t let me out until I was more stable, but that if they dropped to a nearer normal (not even normal, because we know my blood will never get there) he’d let me go. I told my consultant anaesthetist friend the numbers of some blood tests, and when he heard of the pH situation alone, he told me to stay.

In the evening, after a day of my bloods getting consistently worse and then finally, finally dipping just below our agreed threshold, I celebrated the fact that I could leave. The junior doctor told me I could leave. I’d been planning to push for some sort of reliable venous access, but the arrogant asshole doctor put me off the idea of even bothering to talk to any doctors ever aga-

Too much apathy

I can’t even finish this post.

 

 

Ok. Several hours later, let me try to words. Basically… Erm… How do I start this again.

Long story short, after telling me that I could leave, my attractive male nurse (offish, but attractive) walked off to check with the doctors, and it turned out they wouldn’t let me leave. I was at such a level of not caring about my existence (and I’m the third person in this bay to currently feel that way, because there are now three of us who are friends and we spent hours yesterday each just saying we were so done and so beaten and dreaded the next time already)… Anyway I was at such a level of not caring about anything that I didn’t even care about the removal of my femoral line. Unfortunately, the doctors wouldn’t remove it (this actually happened before they refused to let me leave). My brain had been set on the idea of getting out yesterday, and I was sat over by my hospital friend (the only real one I have in here) when I was told I wouldn’t be leaving. My brain instantly decided we were going for a walk. Offsite. Out of here.

Now, let me remind you about my femoral line. I should probably also point out how highly unstable my bloods are being. I didn’t care. I don’t know how to explain it, but earlier that evening a little bit of emotion started to seep through, not enough for me to be able to identify it, but enough for me to sit with my friend and cry. There was a pressure building whether I was capable of recognising it or not, and I needed to relieve that I guess. Subconsciously I think the meltdown never stopped.

Being in hospital made the pair of us feel dead inside. It can do that, to the chronically ill – kill you mentally and make you question the point of existing at all (again, multiple people in this bay are currently feeling like that – all three of us chronically ill). Breaking rules… It made me feel… A little more alive. We said we were going to stand by the main entrance and they got funny about even that. But we headed to the main entrance. And we kept going. And we walked along the busy, busy main road in the dark and the rain, me still in my pyjamas and not too bothered about that fact, finally breathing air that didn’t smell of hospitals and trigger flashbacks… and we went all the way to the huge supermarket. Nobody knew we were in hospital. We walked into the supermarket arm in arm, and we sort of discussed how nobody even knew how sick we were in that moment, that it was our secret out here, that we blended in sort of. We went to the clothes section. We bought the softest, fluffiest pyjamas we cold find, and I got slippers too and bottles of drinks. And then we went to Subway. And we bought edible food. And after an hour, we went back with shopping bags and hot baguettes, and everybody knew where we’d been, but nobody said a thing. Nobody could blame us. Nobody was angry.

Processed with MOLDIV

Top row: Stepping outside of a ward for the first time in six days, then stepping out into fresh air for the first time again too. Middle row (1-4 left to right) 1 – in my pyjamas in the supermarket, 2 – buying ALL THE things, 3 – Subway, 4 – wandering back through Whitechapel at night (the tinier dots of light are the windows of the hospital we escaped from) Bottom row: Wandering in the rain, my purchases, comfort at last.

We got back and they re-checked my blood and it was all screwy again. And if I were capable of feeling an emotion, I think at that point I would have broken down in tears, and just crumbled. But there is nothing left to crumble. I didn’t care though. I decided I want to manage it myself even in here. It would feel safer, which is warped.

I put my head in my hands and I was all NO, but it wasn’t emotion, it was exhaustion. I didn’t want to do it again. I was significantly closer to impeding disaster than I’d felt I was. I decided I was hungry again. My friend gave me her hospital biscuits. Next to her is an old lady who doesn’t speak any English. Because of this, the old lady’s grown up sons take it in turns to sit with her all day, right up until she falls asleep. One of them had laughed when the three other of us decided that today we’re all going home no matter what, and I said I’d race the other two. He gave me the food that he’d brought with him. People can be nice, I guess.

Bloods this morning – good and also confusing at the same time – because one number isn’t really normal but it’s lower than it was so I’m not sure whether to celebrate or not.

Dr Survival is here, time to try and persuade him that I don’t need to be. I want to be freed from my tree.

In my blood, my mind, my body and in my conscious mind in the form of my actions…

There is a rebellion.

 

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“Woke Up Hurting”

Yesterday I broke in a way I have never broken before.

I was so dead inside I couldn’t even find it within myself to long for death.

I was so empty and hurt, that when WR Uni Friend showed up, I couldn’t feign interest in conversation, I could barely reply. My words were monotonous, my replies brief and preceded by long pauses in which I fell apart and pulled myself together but never really succeeded in doing so, and tried not to cry so hard that it almost hurt as I just crumbled around myself trying to clutch at enough of a thought to think of how I was supposed to respond. She sat and I couldn’t deal with the sight of her normality, the way she tried to tell me about her day and engage me in normal conversation, the way she could smile and sit there and say she was stressed to breaking point over uni when I was stressed beyond breaking over things none of my friends can comprehend. The way she asked me if something had happened (after I’d explained to her so many times about why hospitals are such a traumatic environment for me, and after she knew about the old man beside me dying – which my friend, a consultant anaesthetist who came to sit with me for a while, found so distressing to hear he wouldn’t let me talk about it), which made me feel so misunderstood, and so disconnected, and therefore melt down even more inside my own head. I couldn’t even explain. I literally couldn’t words. And I couldn’t stand even the thought of letting myself cry, yet holding it in was so much effort I felt I might burst.

It isn’t the being in hospital at this exact moment that is the hardest part to deal with. Yes I have all the usual PTSD stuff, and the distress of being here is leaving me in permanent panic and freak out mode. And yes, that pushed me to near breaking point, but it isn’t what broke me. It’s the knowledge that this isn’t the last time – that I can’t cope, and I can’t do this, and I am going to have to over and over and over again. And each time I’ll nearly die, and probably wish I had, and then regret that wish, and then fear the fact that it may come true, before starting all over again. It’s that I have nothing left to give, and I don’t know how to face another day of this admission, and that this admission won’t even fix things. Realistically, it will not be the last. It’s the fact that I’ve hit this wall, and there’s no reprieve, no rest, no pause. And I’m going to run into it over and over and over again. Except I can’t break any more. There’s nothing left to pick back up and that will not stop this happening over and over and over. Looking forward into the face of that… I can’t even. I cannot. Even. Even.

This admission was horrific. It would have been horrific for anyone, regardless of their mental state, but I was already beginning to reel and freak at the realisation that I had nothing left to give but no choice other than to let my health keep taking things. Emotionally, I couldn’t carry on. Before the pain and the screw ups and the torturous, multiple, over an hour long attempts to get in any sort of central or arterial line into vessels so scarred they would not co-operate. And then on top of that, people don’t understand my condition, even the diabetes. So I ended up pretty much making and then explaining my own treatment plan, correcting staff… Fighting. Having to fight with them so that their treatment would actually keep me alive, instead of messing things up with the sort of treatment they’d use for a not-at-all-complex individual. The fighting has been exhausting. Everybody tells me different things, there has been so much confusion today alone that I am confused. It resulted with me extremely unwell and in mild acidosis again due to the simple fact that nobody seemed to be able to talk and communicate the plan.

And I couldn’t care. I was beyond apathetic about every aspect of my life. I lost the ability to feel anything. I lost the ability to talk, to communicate, to think a coherent thought. I just couldn’t. I could not think forwards. I was lost in this vortex, this chaotic jumble that I could not unscramble. And at the same time, there was nothing in my brain. I was bursting at the seams and collapsing under the vacuum of my emotional emptiness all at the same time.

And then the lady opposite me spoke to me.

Usually when I’m in hospital, I’m either so unwell, so out of it, so distressed and eager to escape, or so vastly different in age from the people around me, that I become isolated and stuck in this bubble and don’t talk to anyone other than the staff. I had forgotten what it’s like to talk to other chronically ill people, other people who live in hospitals and nearly die a lot and understand exactly how you feel. Exactly. I have forgotten what it’s like to not be able to say anything other than yes. As someone just completely understands. I had forgotten because after losing a very close friend from hospital, I vowed never to do that again. But you form this bond, and it’s unlike anything I can describe.

You’re these two people thrown together in this super vulnerable state that none of your out of hospital friends really understand, and you end each other’s isolation, and in doing so send waves of relief across a bay between two hospital beds. You let out what needs to be let out. You say things that you wouldn’t to a healthy person, and you don’t feel stupid or isolated any more because someone understands, and someone agrees, and someone puts words to feelings you couldn’t in ways you never imagined anyone could or would. You find a lighthouse in the storm and you cling to it. You share deepest darkest secrets and deeply personal facts within less than an hour of knowing each other, because the freindships you make in a hospital aren’t normal – they are sped up, accelerated, within hours you reach a level of intimacy that would take years in the outside world. You save each other in a way medicine never could.

We sat Bonding over father issues at 1am. She gave me confidence to ask about a portacath again, and the longest, most helpful pep talk. To my surprise I seemed to help her a lot too, and she said that we were meant to meet, that this was meant to happen, and I think we’re both so glad that it did. She had moments of just holding her hands out in a way that was all THANK YOU OMG ASDFGHJKL YES, and she said nobody had ever hit the nail on the head or put things so correctly as I did. And I ended up feeling the same and being lost for words and just holding my arms up to the sky. And she was beaten, and she had all the guilt and the emotion that my healthy friends cannot understand, and she’s like 14 years older than me but instantly she felt like a sister. And she also felt like giving up, when I said I was beyond the point of being able to cope and just couldn’t even and didn’t know where to start, she got it too. And she said that she’d try if I promised to. And she said we both had to take baby steps. And then she sat for an hour helping me write a letter to my doctors, because she said that getting flustered and missing a lot of points or just discussing emotion behind them wasn’t going to help my case, and that the rational thought was there, so we should map it out so I could follow a clearly written thing when my brain freaked out and forgot.

“Let me be absolutely clear.

This is mine but I’ll let you in,

Gather round take a part of it, of me, of me

A wasted life seems to mean the most

But these seconds are valuable

[…]

Their medicine is killing me

Some pieces have gone missing” Nothing But Thieves, Emergency

She has been where I am now emotionally. She got it. She got the fear and the impact of staff attitudes and the screw ups that nearly kill you (because seriously they nearly killed me with that acidosis last night, and never came back to repeat the blood gas so they’re damn lucky I ignored their instructions not to listen to my specialist nurse and self-medicated in the end… And she got that it wasn’t this time that was the worst bit. She understood that it would make me freak out, but she got that it was the looking forward that was the worst, the fact that this is life now, that it will never, ever stop. And I ended up watching her convulse with pain in the early hours of the morning because of staff negligence leading o delayed and missed pain relief. But stuff like that is less difficult when someone agrees with and justifies your point.

I am not ok.

I can’t cope.

And I am not better.

But I now have the mobile number of someone who reminded me that hospital friends are the truest, best, most instant friends you’ll ever have. Because they aren’t friends. Instantly, they are family, they understand you in ways no healthy human ever could (through no fault of their own).

I have nothing left to lose.

Because I have nothing.

I am nothing.

There is nothing left.

I can’t focus on holding myself together and protecting myself because I’m too busy looking back for the pieces of me I need in order to survive mentally. And I can’t go back for the bits I lost but need in order to survive, because I am too busy trying to hold together the nothingness that is left, housing nothing in my skull but an emptiness, a void. No soul. No mind. No me.

“Daybreak comes with the devil’s hum

A carcass starts to breathe

Wakes one more time to try and find

A place to count its teeth

And scrub the cuts from yesterday’s

Hot scuffle in the street

Show me the door

I need somewhere to go

[…]

Daylight

Woke up hurting

[…]

Not for the first time

I woke up hurting

Though I can’t quite say why” – Frightened Rabbit, Woke Up Hurting

Except, I can’t even hurt any more.

 

 

 

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.

No Excuses… Even Now

We all know what I’m like about university work. The “#NOEXCUSES” sticker on my laptop perfectly sums up my attitude towards completing uni work. There is no reason in my mind not to do it. The fact that 24 hours ago my blood was at fatal levels of acidity and I was too unwell to be moved to intensive care from the resuscitation unit… wasn’t an excuse to my brain. It was a mere hiccup. 

No Excuses, Superhuman, Never tell me the odds, Caroe Diem… these stickers sum my attitude to life up pretty well

Forget the fact that I spent a few undignified minutes silently sat in my own urine because the doctor accidentally disconnected my catheter and I was too embarrassed to say anything in front of my friends (I persuaded them to go for coffee and they returned after the problem had been solved, with a slice of cinnamon and banana bread that was HEAVEN). Forget the fact that I was at significant risk of becoming acidotic again. I was stressing about the coursework I have that is due in on Friday. I was stressing about the lab session I’m supposed to attend tomorrow. I was trying to figure out if/who I should email about the whole thing, but after my admission around this time last year, the university talked about me leaving, and so I wanted to do anything other than trigger a similar situation. If I leave, I want it to be because I chose to, not because I was made to.

The benefits of almost dying while at uni as apposed to anywhere else is that I still have my laptop and all my coursework stuff in my bag. I also have spare underwear and a book (as someone who ends up in hospital a lot I’m always prepared)… But uni stuff is what saved my butt here. Unfortunately having it with me was as much a curse as it was a blessing. In the early hours of this evening I took out my laptop as Uni Pal sat studying away and making notes on hers, and attempted to complete the lectures I had sat in with a pH of below 7. This reminds me of around this time during my second year. Uni dad walked in to find me on my laptop frantically trying not to fall behind. It was reading week (we are currently in the week before reading week) and all I did all day for the next three weeks was work from my hospital bed as my heart stressed people out and my pH regularly dipped below 7.1. In a strange replication of that same situation, the urge to study now that I felt better hit me hard. I can’t stand unaided, I can’t sit up for more than a few seconds without my muscles shaking and refusing to hold me up… But I can prop my head up with a pillow so that I can see my laptop screen, and so I can study. In my mind, that was resting. I’d slept my entire day away, and writing up the rest of the incomplete lecture notes sat on the screen before me completely distracted my mind from where it was.

Ironically enough I ended up going through slides on acidosis and how it impairs enzyme activity and stops your body producing ATP (energy). People were googling acidosis and reading about it on Wikipedia and asking how on earth I had managed to get the bus here and why I hadn’t called an ambulance. Because I was this strange combination of stubborn and terrified, that’s why.

I also have the start of a novel on this laptop. I forgot that November is NaNoWriMo (national novel writing month) when I started it the other day and feel that I now have a project, although I really would like to catch up on everything I’m so behind on and am starting to use uni as a way to distract myself again.

Last Friday when I was bored in my lecture I ordered an MP3 player, downloaded all the audio files of our lectures so far and the ones my friend had recorded also, and saved them onto the MP3 player. I decided I could use this to distract my mind from where it is and also catch up on the lectures I missed. Unfortunately, I don’t have it with me. It lives in the bag I’ve been using for uni, which for some reason isn’t the one I used on Tuesday. Awesomely enough this hospital has our university wifi, and all the lecture recordings are saved into my memory stick, so I can still re-watch/ listen to all my lectures in hope of zoning out into my happy place and keeping the flashbacks at bay. I know I am unwell enough to need to be here because a) I’m still in a higher dependency ward and b) I’m not losing my mind yet.

Uni Pal and WR Uni friend showed up while I was asleep and brought me chips. They sat with me into the late evening, studying by my bedside (which eventually made me attempt to study when I was with it enough). HK Uni Friend turned up briefly after they left, with Brick Lane bagels and pastries and drink and pineapple and other food she knows I love. 

This time being in hospital has been different. When I came round in resus, there were SO MANY messages on my phone. I have four people visiting me tomorrow all on the same day! Usually I don’t get four in total over weeks and weeks. This time a year ago my only regular visitors were my Uni Parents. I told people all of everything this time. 

A rather good looking make nurse in A&E told me (after asking why I was sorry and me just apologising for being so much bother) that some patients were a bother, but I wasn’t one of them and he liked looking after me because I was nice. He said that if my friends knew how serious the situation was they may be more understanding and that if I were one of his friends he would want me to tell him everything, not try to protect him. A couple of other staff members backed him up (apparently there were many highly attractive doctors in resus, and I was too out of it to see any of them!) so today I told people kind enough to message me or curious enough to ask, the entire truth. 

I don’t want to be here. I don’t want to do this again. But it’s so much easier with constant visitors. I no longer have to watch everyone else sit with friends and family while I lay alone. I can’t do anything for myself at the moment, but I’m doing well with the help of my friends. I’m rarely alone with my thoughts that is brilliant to be honest. They’re trying to make sure that during visiting hours I am not ever alone.

The same HCA as last night is back and he’s so funny and blunt it’s hilarious. He likes me because I’m the only person he doesn’t have to shout at to get a response from and apparently I say please, thank you and sorry a lot and that goes a long way here because few people do. I have to go now, my friend is at the Bastille concert I wish I had been able to go to and she’s going to FaceTime me so I’m there too. I have THE BEST friends.

I also have THE BEST view, just look at tonight’s sunset

Sorry I keep posting so often, I’m just trying to feel less alone when I’m awake and acidotic and alone. I get a lot of support on this blog and comments from people I regard as friends but who I’ve never met. I value those people and their involvement in my life as much as anyone else, and I want to keep them updated to. This is the only way I have to do that and I hope they know I’m ok.

Anyway, I’m waiting for that call from my friend at the concert. There go Bastille, getting me through hard times again with their music.

No way but through.

There Will Be A “K”

I told myself I’d have a break from university in order to avoid breaking, and somehow found myself sat in the library at almost 10pm this evening, having been there for over five hours. I never go to the library, but my room is currently a tip, and as a neat freak I couldn’t handle staring at what can only be described as a landfill in combination with the isolation that I feel being shut inside here. Usually I’d have been completely freaking out at the amount of work I had to do, and I got to the stage of pre-freakout (which was enough to push me out of the door), but I’m kind of dead inside at the moment and that seemed to smother any sort of emotional reaction whatsoever. I finally did a piece of coursework that I’ve been meaning to start for a week, completely gave up with another, and then wrote about assays used to test for diabetes (which I found super easy, having had most of the tests myself).

I locked my computer and went home at one point just to collect the parcels that had been delivered (the MP3 player I ordered when bored in yesterday’s lecture, and the new earphones I ordered last night) and returned to save all my lecture recording onto the MP3 player so that I can listen to them over and over without having to have my laptop open or use data on my phone. I tried to work, but it wasn’t thoughts that distracted me (ok, so there were the odd trains of thought about how pointless it all was, and then how pointless everything was, and then a further downward spiral) but my mind was just numb. I couldn’t focus much. I sat staring at the keyboard a lot.

I got a message from an individual who was trying so hard to be helpful, advising me that they’d got themselves in a rut lately and that the best way out of that sort of situation is to get back a sense of proportion and reality.

Great. People think I have no sense of proportion or reality. They have no idea. It is proportion and reality that put me into this rut when I finally allowed myself to face them. Do they think I’m being a drama queen? I give up with humans. 

I’d already decided to spare people from my presence by completely withdrawing and sitting alone in lectures (ok this was mostly because I can’t face people at all, but also through guilt).

Uni Babe continued to be an absolute babe though.

I’ll always do my best to be there for you, and try and understand what you’re going through. You’re so tough and I don’t know how you do it, but I’m so proud that you are xx – Uni Babe

I felt slightly reconnected with humanity, and let her know how grateful I was. I haven’t been that great with words though. My brain just can’t.

And then proportion and reality started asking if there was anything people could do to help, and saying that she would always always be there, and I still wondered if she understood just what’s inside my head right now. I feel bad that my friends feel responsible. When I cried in my lab on Friday several of them asked what they’d done wrong and started apologising for the way they’d spoken to me and stuff. I genuinely don’t think they can even comprehend what I’m going through right now (ok so that proved that they can’t) which feels isolating but I guess is also good, because it would tear them apart too and I care about them too much to let that happen.

I bumped into my old best friend from sixth form in the library (we have so many of the same thoughts that it’s scary). She bought me a hot chocolate because she’s a legend, and I saved her the computer next to me using my coat and a couple of textbooks on sexually transmitted diseases that the guy next to me left behind. She sat next to me, and my brain felt like I was back in our sixth form common room, and it was nice.

I was arranging to meet a friend who kind of knows the mess I’m in at the moment, and the state its put me in, when she told me that her eating disorder had ruined her day and she’d spent the day wondering which vehicle to throw herself in front of. Out of the blue. Completely casually, adding that she counted it as a productive day (obviously joking). As someone who has been tearing themselves apart with thoughts like that an awful lot lately, I didn’t find it amusing, and I was obviously worried. The trouble is, I can’t deal with my own stuff right now. My own stuff pushed me to and beyond the point of wanting to end it all (trust me, I’m already dead right in the head right now). She knew I couldn’t cope, and she messaged me saying something so huge because she didn’t want to bother or worry her other friends. I kind of just stared at my phone as words saying that it (life with an eating disorder) sucked and that she couldn’t do it any more. And I felt responsible. I didn’t know how to words. I couldn’t think and had been unable to all day. I was falling apart. And suddenly someone had put their life in my hands. I tried so many times to reply. One time my friend had to take my phone off of me. Another time I threw it. So many times I put it back down.

There was so much pressure on me not to screw up, not to say the wrong thing. And I didn’t know what to say. I knew I couldn’t make the person on the other end of my phone see how amazing they are, how different reality is to the way that arse hole eating disorder makes her see herself. And I didn’t know how I was meant to respond. Honestly, I was kind of horrified. Kind of pleased she could at least open up to me. Kind of hurt that she hadn’t even considered the possibility that I was broken and breaking down and had cried in front of her and tearing myself apart (apparently she doesn’t quite understand my situation either). But before anything else I just wanted to be a good friend. I didn’t know how to be. I didn’t know how to be a good human, a good student, a good person. And for a long time I haven’t been a good friend – I’m too ill to be there for people. And yet I had to be. I felt responsible for her life. I had been chosen because she cared too much about other people to bother them or worry them, which kind of hurt a little. But I tore myself apart trying to find the words. I lost my mind. I broke a little more. But I was too dead to feel. Too dead to think even. It took me a long, long time to reply. But I found words. I tried to be sensitive and thoughtful and not say the wrong thing. I tried to help. I was so worried. I put everybody above myself, and my friends matter a great deal to me (even the crappy ones, which this person was not, which meant I worried even more). I was scared I’d fail and that because of something I said or didn’t say, she’d kill herself.

And then after a while she casually went to normal conversation like nothing had happened. And I couldn’t even. By that point it was past 10 o’clock, and my friend, who I call “Batman” and I were sat in a chicken shop.

The whole time we’d been together I’d seen in her face she’d wanted to talk. Consciously or subconsciously she’d been dropping not-so-subtle hints. I knew she needed to talk. She knows me well enough to know I’m a complete mess. She also knew I wouldn’t talk about it, because I just… Can’t. Because she knew there was a lot on my plate, she told me she didn’t want to talk about stuff. But I can make her talk, and I did. We sat in a study room at my accommodation, and I poked the hornets nest. She was unfocussed and clearly needed to let it all out. Something unpleasant happened to her last year and she’s still suffering serious emotional consequences.

I know how she works in a way others don’t (mostly because we’re the same person divided between two brains). I’m ridiculously blunt and say whatever I think (but gently) so people know where they stand with me, because I think that’s what they deserve. She opened up. She continued to open up. She said she hadn’t talked about it for a long time, but it was clear that although she was much better than she has been, her mind was a mess. I didn’t care about my stuff, I was kind of humbled by the fact that she didn’t want to dump her stuff on top of mine. But I told her to forget it, I told her to talk. I wouldn’t take no for an answer, because I could see in the look on her face that she needed that.

I’m good at dealing with other people’s feelings, at putting them into words. I know how “Batman” wrks, and I know how she thinks. She laughed when I got things spot on. I knew her thought processes without her needing to explain them and I know how refreshing it feels to be understood. People had been pushing her and pushing her to get help, and I knew it wasn’t that easy. So we talked about that. We talked about antidepressants and that they weren’t a sign of weakness (if only I could listen to myself). We talked about getting help and steps she can take and the people she needs to talk to at uni and stuff. We talked it all through, my scrambled brain somehow injecting logic into the conversation. And because I know how she works, I talked her round.

I helped her see what she knew and supported her in her decision to do what is right instead of what fear tells her to do. She knew she needed to see someone deep down, that the way she was feeling and the things that were becoming larger and larger in her mind could not stay. Waiting for a GP appointment didn’t seem like a good plan. It didn’t seem quick enough. She was too terrified to make the phone call and couldn’t face going (remind you of anyone??). So I told her I’d go with her. Until gently, there was a “maybe” and eventually there was an “I don’t have a choice do I?” with a small but reluctant smile that said I know I need to do this, and it feels like a relief to take the step, but I don’t want to at all. So I said I’d go with her. I said we’d do it together (and we will. Every step of the way because she doesn’t have to do this alone). Even if we have to walk past the door 20 times before we walk in, even if I have to scoop her into my arms as soon as we’re done and let her cry on my shoulder, even if she hates me. It’s such a huge step and I’m so proud of her (I told her that, and I mean it).

We talked until she stopped stressing over the essay due in tomorrow and finally, at half past the first 1am of today (because of the clock change there are apparently two) I walked her to the reception of my accommodation, telling her not to feel bad at all because she hadn’t asked, I’d made her talk and I hadn’t given her an option, I’d told her we’d go (she feels bad for dragging me away from the library tomorrow – I planned to get there at 8am today just to not be in this room, and didn’t get out of bed until half 1 so… She isn’t keeping me from anything). I promised her that afterwards we’ll go for breakfast or lunch or just do something nice, and then we’ll go to the library and I’ll help her finish that essay (she’s doing and English essay but English Lit was my best subject at A level so I can sort of help). I know how important that first step is, and I have every intention of being there with her.

And then I realised that a year ago (in the first couple of weeks of last November), my uni parents had done exactly the same for me. I remember them saying over and over at me to stop apologising, that they hadn’t offered, they had told, and I had no option but to accept their support (which I learned was going to be there whether even in the absence of my acceptance). One of them took me to my first psychiatrist appointment and sat out in the waiting room until I was done, then took me back to the hospital and ate lunch with me because I was all broken and they knew how much I’d not wanted to go. They talked me into doing the right thing when I didn’t know how too and was too terrified to. They got me to open up and talk about things I didn’t know how to say anyone. And in a way I’d done exactly the same for “Batman” sort of.

We both laughed when I kind of thought out loud and said that I was a uni parent.

And then I turned to her and told her,

“It’ll be ok. It hasn’t been. But it will be. You’re in the middle of the oh but there will be a k.”

She said there would be for me too (I rather fear that there is going to be a full stop instead). She said she was always there if I wanted to talk to, and my response was

“I don’t do that” to which she replied I know. It’s not that I don’t want to talk. I tried to. But every time there’s just this great big long pause and then “I can’t” slips from between my lips and my entire mind implodes. I’m bad at talking. And she, like most uni students right now who don’t even have her added situation to deal with, already has far too much on her plate to handle. It wouldn’t have been fair. It doesn’t feel fair of me to talk to anyone, not this blog, not even the uni parents.

I do all I can, but it isn’t enough. I try to be enough and I’m not. I try to be a good friend and I’m not. People try to protect me because of my health or my emotional state (few know of the PTSD and depression) or because they think my life is way too much for twelve people to handle between them, let alone just me on my own… But my friends come first. They always have and always will. I owe them a lot. They mean a lot to me. And I’ll be with them through every oh and every k. I wish they knew that. I wish I could be enough for them. And I know I don’t deserve them at all. They are such nice, amazing, kind people and every day I wonder why on earth they put up with me. I can’t thank them enough. It’s an honour to know each and every one of them and I am so appreciative of the fact that they are trying so hard.

I find it kinda ironic that I’ve been told to go to the hospital or the walk in centre all week and the only point at which I will go is for someone I truly value (which means someone other than myself). I’m going tomorrow, just not in a way people meant (although I may end up going for myself at some point if my immune system continues to be an idiot and let this infection spread despite the antibiotics I’m on, as it currently seems to be doing).

“You’re in the middle of the oh but there will be a k My Brain, today. I kinda like this combination of words. 

One day I’ll be the human/friend/sibling/daughter/student/auntie/cousin/whatever-other thing-I-am-but-forgot-I-am that the world deserves. Until then… Well, I don’t even know how to try at anything right now, but I’ll get right back to trying when the fog clears (it’s super foggy in London tonight, but I’m referring to a different type of fog).

Sorry this went on so long.

No way but through (this have never felt like a more appropriate thing to say at the end of a post. I’m right here with you “Batman” you don’t have to walk through this alone. Ever. Not a single step. Not a single tear. Not a single moment of pain or a single negative thought. I’ll share it all. I’d take it all if I could. Always… That goes to everyone I know, actually).

 

Escaping Reality (London At Night)

Those of you who followed this blog throughout my first year of university will be aware of my love of wandering around London at night, and of being by the Thames.

There is a feeling of defiance in walking when you feel you could collapse at any second. When your legs are almost too heavy to move and your steps are slow and painful as your muscles (and your busted foot) scream and your energy levels reach negative values, there is a sense of strength and achievement each time your foot pushes off from the ground. Combine that with views of the city that stole your heart and refuses to return it, streets and sights that you are familiar with (and the overwhelming sense of home that results) and there is nothing, NOTHING that could ruin that moment (and nothing that could make me feel more… completely relaxed and content and ok). It kind of feels like defying reality, or at least escaping it for a while.

HK Uni Friend and I hopped on the central line at around 9:45 last night, and ended up at monument station. We took a slow walk through Southwark – across London Bridge and through Borough Market. The market was closed, but all the pubs and bars and restaurants around it were open and SWARMING with loud, overindulged (and far too drunk) city workers letting loose. We encountered a very well dressed businessman laying on the floor trying to punch a homeless man, while his extremely well dressed colleague tried to pull him off. Eventually, the violent drunk guy slumped backwards and sprawled out on the pavement motionless, his fancy suit now in all the dust and cigarette ends that were on the concrete beneath him. His friend apologised profusely to the homeless man before taking a picture of his unconscious colleague and attempting to pick him up and take him home.

Processed with MOLDIV
Top left: Me stood on London Bridge looking towards Tower Bridge and Canary Wharf (just to the left of Tower Bridge).         Top right: Looking from London Bridge over towards Southwark Bridge and St. Paul’s Cathedral behind and to the right of it.         [Underneath top right]: Tower Bridge again (this photo is also the bottom middle)         Bottom left: “The Monument” I think it commemorates the great fire of London which started there or something I think?         Bottom Left: The Shard viewed from London Bridge.
London was not yet asleep, there was traffic everywhere and a ridiculous amount of city workers letting off steam. But it was nice. I felt extremely unwell, but it was easy to focus on something other than the anxiety that I’m starting to develop about becoming unwell and the effect it may have on university. It’s difficult to walk around knowing there is a life threatening emergency brewing in your veins. Without realising how tense I was, I ended up by the Thames again, and once again the huge mass of brown, salty water drowned the weight that was dragging me down and left me floating on a feeling I hadn’t been able to comprehend. Those are the kind of moments I want to capture and drag out forever. I was so much more unwell than I could admit. When I eventually returned home I stumbled a few steps into my room and I was out like a light. My health is far worse than I am willing to admit.

This morning I went to uni as normal, refreshed from my wandering and still smiling as I looked back through the photos. But photos were not enough to escape reality, and it hit me hard.

As I stood up at the end of the two hour lecture, my heart felt weird. I didn’t know quite what it was doing, but I couldn’t walk straight, I was dizzy and disorientated and I felt a weird sort of light headed. I went home and grabbed food before walking to Whitechapel with HK Uni Friend. In the middle of the supermarket there, my eyeballs felt warm and my vision started going, and my head felt like it does right before I pass out. I thought I was going, and my heart felt weird and eventually skipped a couple of beats, but it all made no sense to me. I didn’t stop, I sort of just hoped it would stop and carried on. Eventually I got an awful headache and began to get an ache in my chest as my heart raced far faster than it needed to. It continued to feel weird, and walking home was very, very difficult. I genuinely almost couldn’t walk, my body was just grinding to a heart, I felt like I was going to pass out, and my heart rate was very, very high. I didn’t know how I was moving. I got home and instantly just flopped onto my bed. The weirdness continued, and I realised acidosis is probably not my only significant concern right now.

I went down to reception as they were giving out big boxes of free stuff to residents (also because I decided I should probably tell them about my health, as I was that convinced I was going to pass out). I managed to lock myself out of my room and had to ask them to give me a key card to get back in. I felt like such an idiot, but luckily the first time this happens they help you out for free, so I got away with it this time. I bumped into the super attractive guy on my floor (who I met the other day) again, and he said hi once again (I was too awkward to find any other words to respond with, so our conversation stopped there).

My heart is still racing, which I think is responsible for how spaced out and dizzy I feel. There is a constant weird sensation there that I can’t even describe and I’m getting occasional palpitations as it hiccups, but nothing sinister or anything.

But this is not good. This situation, and my health right now, is not good. It might not sound too bad, but that’s because I don’t want to get all dramatic and I don’t want to spend paragraphs listing the severity of the situation. I’m out of it. I’m half asleep even when I’m awake. I can’t think straight, and there keep just being these gaps in time which I’m not even aware of unless I suddenly find myself in the middle of a road or I’ve walked into a wall or whatever. Breathing is such an effort, and I kind of know I’m going to need some serious help sometime soon. This is due to the creeping acidosis and the effects that having a lower than normal pH for the past few days has had on my body. The last think I need is for my heart to have a tantrum on top of this.

For now, time to go out again (I don’t think this is a good time to be alone). Uni Mum messaged me to arrange going for drinks sometime soon, and I may be going to stay with Auntie Godmother tonight as I messaged her, and in response my cousin asked me to stay the night with them…

This post was almost decent, and then I rambled and ruined it. But anyway…

No way but through.

 

I’ll Stop When I Fall

Things I learned yesterday:

  • It’s weird having a lecture in the basement of a hospital you’ve been treated in.
  • The medical lecturer who stood in the basement of the hospital lecturing us said that biomedical science was harder than medicine because we had to know the biology behind the medical junk as well.
  • We’re going to be assigned tutors from the medical school for the next two years (so the medics that tell us to get off “their” campus can please go away).
  • I started thinking about the future. Properly thinking about the future, like even more than I have been. I’m toying with several ideas, ranging from going to university in Australia/ Canada, doing a cardiology/ physiology/ journalism degree (vastly different I know), moving to Plymouth, settling into research and getting my competences in biomedical science, and getting a PhD.
  • I’ve been thinking about a tattoo even more seriously and started sketching about some designs. My brain knows this is a very stupid idea. It also doesn’t care.
  • Going to the women’s rugby taster session is a very good idea. Women’s Rugby Uni Friend invited me along because she said there would be copious amounts of free food (there was, I sat there while they all played rugby and ate until I was stuffed). Most of the girls were medics, they were all lovely, it reminded me of when I used to play for a football team and made me want to get into sport again more than ever.
  • Stepney Green Park exists (until I sat in it with all the rugby girls for hours watching the air ambulance take off and return, I had no idea it was even a place.

I went back to WR Uni Friend’s flat afterwards and discovered that my heart was very annoyed. She said I looked “peaky” but was awesome enough to walk me home, and offer to let me live with her and her flatmates next year. She gave me a pack of bagels that she had, and some of the risotto that she had cooked the night before, and I returned home to my flat with it. By the time I walked into my room I was on the verge of passing out. I had an accidental three hour nap, and woke up in time to actually answer a phonecall from my godfather. I love his phone calls almost as much as I love him. We spoke all about uni and lectures and the layout of the course, and then we got onto the subject of my health, and we started talking about exercise. He was the first person not to try and discourage me. He knew what he was talking about, and he knew that certain symptoms weren’t good, but he also seemed to pick up on how much it meant to me. He didn’t call me reckless and he didn’t tell me it was a bad idea, he tried to help me find the safest way to do it. He steered me away from swimming and said I should ride a static bike, then he decided a rowing machine was less of a height to fall from if I passed out. It was so lovely to end a conversation with: Love you and Love you too.

Walking home from lectures this morning, a really weird thing happened. A week or so ago I was walking back to my room and walked into a wall because there was a complete gap in time. The same sort of thing happened again. I was walking along the pavement one minute, and then it wasn’t like anything went black, or I was outside looking in, it was literally like time jumped, like a few seconds just didn’t exist. Suddenly I zoned back into myself to the sound of car horns and shouting, and I had no idea where I was. And then I got a bit more with it and found that I was in the MIDDLE OF MILE END ROAD. A main road. Just walking slowly and clumsily across it. WR Uni Friend was way more freaked out by this than I was (If there was any hope of this post being chronological, it just died, I’m sorry).

Other things I learned yesterday:

  • MY STUDENT LOAN WAS FINALLY PAID
  • 10:30pm is a fantastic time to go shopping in a low budget supermarket, especially with HK Uni Friend, who already knew what products were good and what weren’t.
  • Carrying 6l of drinks home from the supermarket is too much effort, even if I get the bus half way home – by the time we were almost home I was coughing and coughing, brining up fluid, and wheezing, and it wasn’t fun. I was close to passing out. My abdomen was so swollen it went out past my boobs – I was told it didn’t look that bad, but if it had been observed in its usual state the difference would have seemed as alarming as it actually was.
  • I had an appointment in the pacing/ device clinic at the heart hospital the next day at 10am, and would therefore not be getting a lie in.
  • Having a lot of food is awesome
  • Breaking news for diabetics everywhere: Some system became the first artificial pancreas system to receive FDA approval. This. Is. Huge. There are a lot of mental health issues associated with diabetes. Diabetics are more likely to experience depression or eating disorders, and people often underestimate type 1 diabetes, confusing it with type 2 (even my friends who are studying a degree in biomedical science seem to think that diabetes is a trivial thing. I know two families who have lost children to it. I nearly lost myself to it).

 

This morning I left home at 9 and stood around on a slowly filling platform on the London underground as District Line trains rolled in and out. I knew it was going to be an awful journey when I looked up at the board, and instead of saying time until arrival, it just said HELD next to each train. There were major delays on multiple lines including the District Line, which meant the Hammersmith and City line was also significantly delayed. I wormed my way onto a packed train when it finally arrived, and stood there unsure whether I was going to fall asleep or pass out. People shoved and pushed and tutted and sighed and were altogether grumpy and impatient as London commuters usually are. The train sat in tunnels for minutes as the trains ahead of us sat at platforms, delayed. When we reached stations we sat with the doors open for five minutes, allowing an extraordinary number of people to force their way onto the train before it pulled away again.

I went to the clinic, sat around waiting, they did whatever had to be done with Reginald (the little device that lives in my chest), told me to go back in three months time, and i wandered out into the rain. Finally, some rain! It was refreshing and the air smelled amazing.

I got back, ate food, made lecture notes, learned that today is apparently national heart day or something, and then fell asleep until 2pm. It took me a full hour to wake up.

WR Uni Friend told me about her family, and it inspired me to FaceTime my little brother. We spoke for well over an hour. He talked to me about school (he NEVER talks about school to ANYONE). He told me what he’s been learning and what subjects he likes and started showing me his exercise books (you’ve no idea what a big deal this is, my brother is 14, hates school, and thinks it is a waste of time). He told me he’d been sneakily doing the homework that he forgot in the bathroom late at night so that he could hand it in for the next morning, and then he started talking about films and general life. He is still not enjoying life with narcissist nephew, who thought he was a big man making gestures about me behind the phone while I spoke to my brother (who got very defensive and made me feel ALL THE FEELS). He called me back and we spoke for longer, ignoring my parents insistence that he did his homework. When I asked him how stress dad was being lately, he just made a deadened groaning sound and said he’d say no more. I asked my mum if she wanted to meet up with me today a few days ago, and she said no because Thursday (today) is her only day off. But my little brother and her are now coming to meet me on Saturday, and my brother and I are really looking forward to seeing each other. He was disappointed when he had to get off of the phone and go for dinner. I felt like I’d finally reclaimed him from his games console and it was so nice!

With my newfound funds I bought some textbooks and applied for a new students’ union card, and I’m currently trying to ignore the nausea, distorted vision, headache, and taste of acidosis that is slowly overwhelming my senses. In a few hours, I’m going to have a problem. Right now, I intend to have a life (HK Uni Friend is on her way back to our accommodation and we’re going for a night time stroll… At 9:30pm… In Mile End – which, for those of you who don’t know, is not a particularly nice place, especially for young women… There’s a lot of crime, especially muggings and sexual assault, and especially among our university student colleagues… But hey. We want to walk).

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I’m pretty sure the metatarsal on my right foot isn’t supposed to look like that… Or hurt so much. I also don’t want to bother doctors for such a minor thing, and sort of feel like I deserve to hurt because I’m such an awful excuse for a human being.
Everyone around me is moaning so much about having a cold or a paper cut or a sore throat or whatever, and in a way I kind of feel like a badass enduring this and want to see it through until it doesn’t hurt any more. I feel like I’m kind of pathetic bowing down to the pain of this, and I also don’t want to appear weak in front of anyone. My friend is a doctor. He looked at it… Swore. Told me it was quite clearly broken, that I was THE definition of a tough cookie and must have a ridiculous pain threshold, and that professional footballers rolled around on the floor with injuries like this. I do have a rather irritating limp, and I have tried to put it back into place multiple times (as soon as I stand on it, it looks like this again). It’s a minor, minor injury and compared to everything my body has been through in the  last few months alone it is barely a scratch in comparison, and in my mind therefore nothing to worry about (especially as I’m currently significantly unwell and that is demanding all of my attention instead).

My health is creeping up on me. My heart is getting grumpier as the days go on and as I sit here I can feel acidosis brewing again. I should go to a hospital. Really I should, for so many reasons… But my friend is back and she wants us to go for that walk, and I want more than anything to wander with her. So it’s stupid, but I don’t want to be like one of those people who resigns to bed with the lightest sniffle and acts like they are dying. I want to bury my health, stop letting it hold me back, ignore the pain that I rightly deserve (and in fact let it remind me that I am still alive), and go out there into the night, into the city I love… And live.

I stop when I can’t carry on… And I’m not at that stage yet.

Sorry about this post. I’ve no idea what it is, but hey.

No way but through.

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Time to step out into this beautiful city… I fancy wandering along the banks of the Thames, so I may go and do exactly that!

I’m just trying to get a life (as the title of this blog suggests) I’m lost, but even my godfather noted that I’m in such better spirits than when I met him on Southbank a few weeks ago…

I just need to live a little. Just a little, before the next time I almost die (who am I kidding, the next time is already here, my body is killing itself and I can’t hold this of for much longer).

No way but through.

Carrying On

A really weird thing has happened to me in the last couple of days – I’ve started thinking forward, planning. Not just the next day (I kind of live in the moment and go with whatever) but the proper future, like what may be beyond this degree. This is a huge deal for me because for a long time I was so uncertain that such a future would be there, or that I’d make it to the other side of this degree, that I saw no point in planning, and that even thinking that far forward would become disheartening and remind me that living with my health is like playing Russian roulette – each time things go wrong could be the last.

Firstly, I stopped living in fear. I let go. And then I came to uni, and it injected some ambition back into my life.

Yesterday I woke up, took my bins out, and arrived at my comparative physiology lecture 20 minutes early. In the lecture, I felt like I was going to pass out. I had a thumping headache and my vision was going. 9am was too early. The rest of our lectures are 10am, and I’ve found them so much easier to wake up for (today and on Monday). I wasn’t as exhausted as I always was last year (when all my lectures started at 9) and I’ve decided that extra hour in bed makes all the difference!

I sat there listening to the lecturer talk about his research and all the places it had taken him, and it made me think a lot. The lecturers that stand before us and take a couple of hours of their time to share the knowledge that they’ve gained are published scientists. They’ve worked in many places, contributed to incredible research and discovered awesome things. The places they’ve been and the things they have done with their lives are incredible and so interesting. I found myself drawn to the idea of research for the first time since I started this degree. I’ve always liked the idea of lecturing, but suddenly getting a PhD and working in  research lab was such an appealing idea to me. I wanted to do medicine. That was the dream – to help people, and then once qualified highly enough, volunteer for a charity and provide medical care and surgery in places where people couldn’t afford it. I sat there and thought it all through and realised that with my health, especially in its current state, that isn’t a realistic aim. I needed to scale down the dream and plant my feet firmly back in reality. So it hit me in the middle of that lecture, that I could think of nothing better than working all day on something that genuinely interested me, and then talking about it to a room full of university students and sparking some interest in them too as my lecturers have done in my own mind. I feel like that is also a way of passing on some good and spreading something positive in the world.

I went home, cooked myself a tiny amount of gluten free pasta (which was also free from egg, milk, and something else, so I wondered how on earth it was still pasta). I listened to a recording of yesterday’s lecture once again s that I wasn’t wasting time not learning. I did this in first year – I started the year doing far too much work. I was studying for 11 hours a day, but not out of pressure, because something in a lecture would grab my interest and I’d type it into a search engine and end up in a rabbit hole of curiosity that would lead me into hours of reading research papers and online textbooks until all my questions had been answered. As a result, my notes went into FAR too much detail and were useless for revision purposes as there was more extra work than actual lecture content, and after a few weeks I became unwell and eventually ended up just attending two hours of lectures a day and sleeping the rest of the day away because I could do no more.

I went to my physiology lecture. This year our physiology module focusses on cardiac and respiratory physiology. I already knew the lecture content in more detail than we covered it, because I have a huge interest in cardiology and the workings of the heart, and after discussions with cardiologists that cared for me sparked interest, I would ask to borrow their text books while I was in the CCU or end up on the internet reading around the subject again (oh wow I’m such a nerd). A lot of the stuff I knew because my own heart had led to me hearing terms and stuff before. My friends found it funny. They just kept looking at me and whispering “OK so I’m revising this with you because you can just teach me it all.”

I went home and read through a general biomedical science textbook, reading about the content of all the lectures we’d had so far but from a different source. I then made revision notes, before realising how unwell I felt again. I curled up around my laptop and guiltily put on a YouTube video, before falling asleep. I napped on and off for two hours, and woke up feeling like I hadn’t slept for a million years.

I also woke up to the AWESOME news that Student Finance England are FINALLY going to pay my student loan and that the money would be in my account within three working days. This is because I was finally able to enrol on the university system, due to receiving my corrected exam results the other day.

I found a map of where our lecture in the dental hospital was due to be the next morning, and sent it to everyone I knew as I knew people were as clueless as I had been about where to go. I have never received so many messages from people saying they love me. It was pretty funny.

HK friend invited me to the pub later that night to meet her other friend from Hong Kong who also happens to go to our university. I was bummed out because I’d missed a phone call from my godfather and I love our long old chats, and I was once again in the start of acidosis and losing the ability to remain conscious, but I dealt with it yet again and and three hours later I left to meet her. I’m so glad I went.

There were nine people, and the only one of them I knew was HK Uni Friend. Her other HK friend was so lovely! They were all so easy to talk to and such an attractive bunch of people! I was worried they wouldn’t accept me, and I’m usually really shy, but I put myself out there and chatted and really gelled with one girl in particular (who I will now call Fresher Friend). I had such a great time, and was introduced to them by HK Uni Friend as some sort of miracle, who was extremely tough (and then NO. She’s TOUGH) which I guess is a compliment? (even if it couldn’t be further from the truth!). I had such a great, great time. It was all so relaxed, and they gave me a voucher to get a really cheap gourmet burger which came on a huge plate with chips and onion rings. My old flatmate was working behind the bar but I got talking to this guy who was middle aged. He asked me where my parents were from as I’m mixed race and he noticed my afro-carribean half. I spoke about my dad, and he asked me about him and if I’d ever been out to meet my extended family. I said I didn’t know my dad, and he was estranged from two daughters who were close to my age. He kept telling me to get in contact with my dad and decide what he was like for myself, but he wasn’t stroppy about it, just said it from the dad point of view. He was friendly and we talked for quite a while… Until I went to join the others again. There was this really pretty fresher there (Fresher Friend) and she was so lovely. She started telling me her entire life story and then apologised but said I was just so easy to talk to (I get that a lot, and I never understand why people are sorry for letting out what they need to let out). Everyone was smoking fancy french cigarettes (apparently that particular brand are referred to as bitch sticks) and passing around drinks and wine. They were such a cool group of people, well dressed and so above the sort of people I ever thought I could mix with.

They invited us out with them on Saturday night. Fresher Friend asked me to go, and she also asked if we could meet up between lectures for coffee and stuff sometime. She lives in the hall block that I lived in last year, although right at the other end, but she looks out the same way onto train tracks and has the same view I did. We got along so well and I was really surprised. It was the kind of stuff I missed out on last year – meeting new non-biomed people, mixing, going out at weekends… I can’t believe it happened to me, it feels so surreal. It’s me. It was such a great night and it was so chill and I was there… And people like me… Me! What… Even.

I came home passing out. I probably should go to hospital at some point but I can’t. I considered getting help and thought through it all, in my mind walking to the hospital and letting them start treatment to save me. But even in my imagination I freaked out to the point that the imagined scenario fell apart around me, tumbling down as panic overrode it all. I literally can’t. I see doctors in my mind, I see my health teams finding out I’m here and deciding that instead of calling me and being ignored they will appear in person… And I can’t go there. I don’t want to face them because I don’t want to face up to my health. I am comfortably in denial and somehow I am dancing along in this state and it feels bad and I can’t cope or carry on like this but I’m at uni and I will not let that go. I’m terrified of missing out on uni because I am loving it, and I’m even more scared about how the staff will react. I can’t live like this.

I don’t want this blog to mention my health unless it becomes a huge issue/ nearly kills me. I don’t like that I mention it so much, but it is a huge part of my life and this is the only place I have to let it out. I don’t want pity or sympathy (in fact I actively don’t want those things), I just want to let it out and perhaps help people word their own feelings or find people who understand mine in the process. I guess I also want healthy people to see what goes on behind the scenes of chronic and serious illness.

Normal life may be a bit boring, but I feel that my life is becoming increasingly normal and I’d like to just focus on normality a little bit, instead of shaping my health problems into my identity in shape of my personality, which I don’t want to do. I don’t need this blog as a coping mechanism right now as I have done, because things feel pretty amazing. I’m feeling much better about my 2:1, after I told my result to the uni parent who I hadn’t spoken to for months (who was certain I would get a first even when I was in hospital at the start of the year, and seemed to think I was definitely going to achieve one). I expected disappointment. I expected a shrug of the shoulders. I got a congratulations. In fact, I got “Great news! Well done! Delighted for you.” And then it was easier for me to sit with my grade, because I stopped feeling like I’d let everybody down. Somebody who had expected so much from me was happy that I got a 2:1, they didn’t voice their disappointment, and in doing so they almost silenced mine. I’m in a better place emotionally thanks to university than I have been in a long time (ok university also destroyed my emotional state at times last year but hey). And I actually made new friends, who were so nice and easy to talk to that I didn’t feel like my usual awkward self around them.

I don’t even know what I’m trying to say. I’m dealing with physical stuff and emotional stuff, and I don’t want to deal with any of it at all. Not any more. Not in a sense of letting it do its own thing and take my life down with it, but because I don’t want it to be a thing. I don’t know what healthy / not chronically ill feels like, but I’d really like to experience it for a day. I think it would feel weird. I think it would feel like freedom. I think it would feel amazing. I don’t want the responsibility of controlling my body with injections and tablets to keep myself alive and then to fail and almost die anyway. I feel responsible and like a failure when my health deteriorates because it is my body and I try to manage it and it is the one thing I’m meant to be able to control. Always. Even if everything else falls apart, your body is yours. Except I feel like someone else owns mine – all the doctors that rule it, the health that destroys it, and the demons that move into the cracks that appear under the pressure of these unwelcome visitors. The week I’ve had so far is what I missed in first year. I’ve met so many people, fitted in with three different groups of friends and spoken to people I haven’t spoken to before. I’ve felt less lonely, I’ve been socialising and laughing and smiling. I don’t want to lose that again. I don’t want to lose this situation. I don’t want my health to rob me of a single element of this and I know it will but I don’t want it to. I am beyond determined to just ignore it because in my mind that is the only way to fix the problem and make it all go away. I know I’m so lucky, and I am incredibly grateful for my situation; I don’t mean to sound spoiled or pathetic, I’m just incredibly and helplessly frustrated and so, so desperate not to let my health do its thing any more.

But I am kind of living by this attitude right now. So I guess to share that philosophy I’ll go back to the way I used to end my posts when I started this blog.

Step (I’ve lost count) to getting out of a rut in life:

There are two things you do when life goes wrong: You get up, and you carry on. (My brain occasionally has productive thoughts – and this one even accidentally RHYMES!)

No way but through.

Unaccustomed

I haven’t posted for a few days because lectures are surprisingly exhausting, and I have returned to my first year panicked state of feeling guilty if my attention is given to anything other than uni work (I don’t mind, because finally I have something to fill my time, and I have been reminded of how in love I am with this degree).

I’m not really sure what’s going on with this blog. The format of my posts seems to be changing (by accident) and I have kind of gone back to rambling on about nothing in particular. One more post of awfulness and then I promise to try and shape this all into something I’m half pleased with.

25/09

I spent all day in bed so my body could recover from its brief encounter with (almost) acidosis. It responded by… going back into acidosis at 4pm. I’d been sleeping on and off all day and I felt so unwell that a small panic eventually began to bubble up at the thought of missing any university at all. I concluded that I probably hadn’t entirely got myself out of this situation the night before, dealt with it as best I could all over again, and started reading over physiology lecture slides in preparation for a return to what I can only describe as heaven on earth (known to the rest of my course mates as our university).

Hong Kong Uni Friend invited me to the cinema at 8. I could only stay awake for 5-10 minutes when she messaged me, and even then my eyes were heavy and hardly open. But I’m not being the unwell person this year, so I said yes. She paid for my ticket, and for a large popcorn and drink (it took me two hands to hold the drink alone, the portion sizes were so big!). When I met HK Uni Friend my abdomen was slightly distended. We watched it grow until I looked pregnant.

On the way home we encountered a drunk guy wandering up the steps to the Central Line. He was asking a couple where he should go and they clearly didn’t want anything to do with him. He stank of booze, and when I spoke to him he said he was having a bad day. He’s lost his friends, his phone, his Oyster card, and his jacket, and any memory of how on earth to get home. Eventually we worked out that if he got to Upminster, he could get a taxi home with his casino winnings (he’d just been kicked out for being too drunk). He was middle aged, very apologetic and embarrassed, and extremely wobbly on his feet. I said I’d show him where to go, he was going our way. HK Uni Friend didn’t say much, which seemed to be a wise decision, as I received many kisses on our one stop Central Line ride, and she escaped with none. I didn’t like some random guy kissing me on the cheek multiple times, and preferred when he just stood there saying we were very nice and that this demonstrated the circle of life (he said thank you more times than I do, which I thought was impossible!). As the tube pulled away I was so focussed on the drunk guy that I forgot to get my balance and stumbled over onto my foot. It rolled underneath me, twisting my ankle, and making my most lateral metatarsal scream (the foot bone behind your little toe).

I ignored the foot thing and we walked the guy to the next platform he needed and stood with him until the train arrived. He got onto the train still shouting thank you, and we left satisfied that he would at least get somewhere significantly nearer to his home.

I was introduced to the night guard of our accommodation, who had a long conversation in French with HK Uni Friend (whose family is actually french). HK Uni Friend had already warned him about me, and he said he’d almost come to my room the night before to check on me. We asked him to alter my key-card so that I had access to the gym. He gave me a form to fill out and went to do whatever needed to be done to make that a thing.

I experienced that awkward moment where the only “no” you can circle on a list of 14-15 health conditions/ issues that mean you’re unsafe to use a gym is Are you pregnant? (because my love life is as non-existent as the functioning of my beta cells, and my body is a poop).

It asked stuff along the lines of

  • Are you unaccustomed to strenuous exercise?
  • Do you or have you ever had chest pain or heart palpitations?
  • Do you have a heart condition?
  • Do you have a respiratory condition such as asthma?
  • Do you have a chronic illness such as diabetes, epilepsy… ?

And the list went on. He told me to be honest when I filled out the form and questioned whether I could or should actually use the gym. I told him it was fine and that I’d try to build up to stuff slowly. And then somehow at some point he learned that I’d spent an hour laying helplessly because I was too unwell to move, and decided that knocking on my door every night shift to make sure I was alright wasn’t enough of a precaution, and so made me put my mobile number into the mobile phone that the night porters carry with them, which will always be with a member of staff 24/7. I also took the number for reception. He said he had a duty of care for me and he wanted to make sure I was ok while i was living here. I kind of felt like I’d be safe here then.

HK Uni Friend showed me where to take my rubbish, and on the way we encountered a drunk guy stumbling over to the lift in her wing of the building covered from head to foot in the contents of his own stomach. We were pretty grossed out by this, as were the people hanging around reception, who were really friendly and chatted with us. Once again I was bought food, for which I felt completely awful, but HK Uni Friend said it wasn’t charity, she wanted to do it (which made me feel a tiny bit less awful and pathetic).

26/09

I woke up with a throbbing pain still in my foot. Upon removing my foot from the warmth of the covers, I discovered that most of it was purple, with a huge almost black “epicentre” over the metatarsal which I then realised (as the swelling had settled down a lot) stuck out in a way that it probably shouldn’t. I was pretty amused, so sent a picture to a couple of my course mates (I have discovered that biomedics seem to be intrigued by this sort of picture) who took one look and immediately decided that I had broken my foot. This resulted in them for the rest of the day pleading with me to go to the hospital as I limped around totally not bothered by the sharp pain. No thanks. Just no.

I left home 20 minutes before the lecture (which was literally on the other side of the road) started, with Bastille playing in my ears and a view of central London stretched out before me as I walked down the corridor. HK Uni Friend and Portsmouth Uni friend were both a little late to meet me, but we went into lectures anyway. My really good friend from last year who I always used to meet before lectures sat next to me. We hadn’t messaged for months because she was super stressed out by exams and I felt like nobody would really want to talk to me, but it was as if we’d never been apart. Being in lectures felt so, so good. I can’t even explain it. After two hours of human molecular biology (with a northern lecturer who gave off a Noel Gallagher sort of vibe and became significantly more upbeat when he’d had more coffee and got past all the boring “this person lectures you these weeks” stuff), we had a one hour break and then went into our physiology lecture.

After that, Uni Babe and I bumped into Uni Pal and Women’s Rugby Uni Friend (who we’d just been sitting with) in the shop opposite campus. They invited us to go to Stratford with them to get piercings, so we got on the bus and went with them. I had no money for a piercing and wouldn’t have gotten one even if I did (I am genuinely considering a tattoo though, and have been for the last year. I really, really want one to cover a surgery scar from radial artery surgery which people always mistake for a self harm scar). We were told to go back at four, so we sat and chatted about what lecturers they fancied and our personal tutors and other random junk. My lunch was paid for which made me almost want to cry with shame, although I was so hungry I felt sick so I eventually gave into their persistent offers and said yes-please-thank-you-sorry.

I spent my afternoon sat in a tattoo parlour drinking tea made by the tattoo apprentice, and in complete heaven due to the amount of art and awesome body art I was surrounded by. I watched people getting tattoos and I got talking to the lovely (and very talented) tattoo apprentice. I showed her some of my drawings, and then asked if I could look through her sketch book.  I went through it cover to cover and it was so awesome to talk to an artist and just get lost in a discussion about art. She was so talented and my favourite was a (not anatomically accurate at all but amazing looking) heart with blue major vessels, and the actual muscle itself made up of pink/ purple crystals. I discussed all her drawings with her but kept going back to that one. I took a picture of it (with her permission) as I decided that instead of an ECG trace over the line of my scar or an anatomically accurate heart in black and white, I wanted that one. So I finally figured out what tattoo I wanted while my friends got another cartilage piercing and (another) nipple piercing respectively (Uni Babe immediately bailed when we got to the place, and I’m not meant to have tattoos or whatever so…). They’re such an awesome group of people, they also have tattoos which makes them even more awesome in my eyes (I never used to see the appeal of tattoos, but now I’m not sure whether it is the fact that my health means I shouldn’t really get one, or the feeling of rebellion, or the genuine appreciation of the beauty of some of them, or the act of covering the scars that I’m not comfortable with… But I’m just drawn to the idea of them).

I felt like I was going to pass out multiple times, and couldn’t work out why. There was an undercurrent of awfulness, but I was more focussed on my foot and arguing about why I refused to go to hospital for such a teeny tiny thing as an annoyed metatarsal. As we wandered back through Mile End, it was pointed out the “You look like you’re actually pregnant!” I’m pretty conscious of my swelling when it happens, and I felt super embarrassed. Uni Pal told them that when we’d gone out the other week I’d looked pregnant with triplets. I feel like I should probably get that issue sorted…

I finished my lecture notes from that day of lectures (I made notes before the lectures from the slides, then during the lectures from what the lecturer added, and then combined them all afterwards into detailed notes from which I then made a revision sheet). I do not want to fall behind this year. It took me until midnight but I loved every second and I was driven by this unshakable desire to just… Fill every empty corner of my brain with knowledge, I guess.

And then I realised I was back in the early stages of acidosis. I’d been fighting it all afternoon and still hadn’t shaken it off again (because I needed IVs to do that properly and I’ve no intention of going to seek the help of people who could sort that out under any circumstances right now). I know I can’t hold it off, but there’s this huge mental block between me and hospitals. I can’t even pick up the phone or reply to an email if I know there’s a doctor or nurse at the other end at the moment. I shake. And I’m too afraid of the university’s reaction to miss even one lecture (which some already had just one day in!). I patiently waited, and moderately panicked, until I had the energy to lift my head off of the pillow, made it to the sink, and just drank and drank and drank. I don’t usually panic about my health, and I wasn’t panicking about what was going on inside of me, I was panicking about the effect it would have, the reaction of my university, the things it would take from me… How messed up is that?

I ended up getting into the shower at 1am, after my 12th nosebleed of the day. I put on a Jenna+Julien podcast (the background sound to my day) and ate some food. I fell asleep to a recording of that day’s lectures, listening to my friend’s personal tutor talking about the C-value paradox and tandemly repeated DNA segments. Because that was all that mattered to me. I have uni back, I’m back living my dream, and my life has something in it again. Uni is my life and my life is uni. It’s like a comfort blanket. I love it here .

The panic, the pressure, the throwing away all other interests and putting away the non-fiction book I’ve been reading so I can re-read the paperback I have about epigenetics… It has begun again. The pressure is unreal, and I’m just constantly terrified, almost phobic… about becoming unwell, or ending up in hospital, or missing even a single thing. Yes it is stress and pressure, and being back at uni is unreal in terms of exhaustion. But… I love it (even though I’ve become a little unaccustomed to it). I feel alive. It makes me feel like I have a life.

And that’s all I wanted, for so long. To go to uni. To feel alive.

Never underestimate the power of an education.

For me, there’s no way but uni. Without this place I could never have kept going.

Despite Nothing

“You were so ill.”

“You got 3 hours of sleep in a week.”

“You sat an exam with bloods that should have had you in resus.”

“You didn’t fail a single thing despite everything you went through and were going through.”

“How are you even still alive, let alone still at uni AND through to second year?”

“Despite your health you did great.”

No. I set standards for myself and I fell short of them. Everyone else I know from our course got a first at the end of year one. A lot of them just about scraped an overall average of 70% or above. And I averaged out below 70. I haven’t calculated the exact number, it’s a comfortable/ high 2:1 (mid – high 60s), but all I could think was that the deputy head of my school was right back in November when he said that I was capable of a first but my health was going to stop me getting one, and that for that reason I should take time out until my health improved (news flash – it isn’t going to, so I’d just never come back I guess). All I could hear replaying in my mind was four different lecturers saying:

There’s no reason you shouldn’t get a first.

I will be VERY surprised if you don’t get a first.

Something will have to go horribly wrong for you not to get a first, given all you’ve been going through while consistently producing firsts all year. 

You’ll get a first (my anatomy lecturer said this to me, after I almost died in an anatomy lab, was rushed to hospital in an ambulance, and still managed to get a solid first in the work from that practical… And then got the second highest mark in a “clicker test” while having missed well over half of the lectures. He was impressed. I told him this would not be maintained) In fact, I’m so sure you’ll get a first that if you don’t I’ll shout. 

I said I wouldn’t. I tried to say I wouldn’t, and they said that they’d seen plenty of students and knew well enough to see that I was more than capable of getting a first. I couldn’t explain the impact my health was starting to have, the situations elsewhere that were stressing me out and my overwhelming fear of the university turning around and kicking me out because I wasn’t fit to be there or some rubbish.

But I’m disappointed. My health isn’t an excuse. It isn’t me. I don’t care why I fell short, I fell short. No excuses.

Everybody I told was impressed. They tried to talk away my disappointment in myself and replace it with their own viewpoint.

My argument was:

Without the circumstances I was in around exams, I could have done better and I’m so frustrated because I KNOW I was capable

My friends in response were all:

But… you did have those circumstances and it’s impressive that you even made it to your exams with them, forget passing them or getting a high 2:1 overall at the end of such an awful year where you missed over HALF of all the taught programmes. It’s even impressive to see you walking again and looking so much better… You look like a different person. I’ve honestly never seen you look so well (this is ironic, for reasons you will discover later in this post).

This wasn’t something I could be talked out of, and nobody could understand why I had any reason to be disappointed. But they look at me and see illness, and I look at myself and  see the person they all overlook. I see who I was. I see somebody who is capable and when that same person in the mirror doesn’t achieve the things I know she is capable of (for whatever reason) it feels like a personal failure. My health isn’t an excuse to me. It isn’t. It is my normal and I should learn to adapt and achieve with it. Not despite it. I do everything despite nothing. I achieve things with my health issues. There’s a difference in that outlook that people don’t seem to understand.

Let me feel it, let me get lost in it, let me get up from it and move on. Don’t drag it out by telling me that the way I feel is stupid so that I bury it and let it eat away at me. Let me have this. I’m disappointed. But I need this, this experience, because it feels like a catalyst. My health stole the first that my mind was capable of getting. Or did it? That’s what everyone is telling me. I fall short, it’s what I do. For a few minutes I spiralled into self loathing and was very, very low. Because I needed to let that reaction pass. And it did. By the time Bastille was playing through my headphones as I walked to meet Uni Portsmouth Friend in her new flat, I was even more determined to be normal – and that determination was fuelled by a fire, an anger. I am not getting ill(er) again. It (my health) isn’t taking anything else. It can take all of me, or it can leave my life alone.

I let so many people down. But mostly, I let myself down. And it’s “fine” because I nearly died an awful lot of times throughout the last uni year, and I’m the “ill” one. But it isn’t. It isn’t fine at all. I don’t want people to be amazed “despite” something. People lower their expectations of me because of my health and I am done with that. I’m done. The pressure of being top of the class all the way through secondary school was awful, but it pushed me on and made the bullying worth it. I guess that’s the person I am. There was always so much pressure on me from all angles within school to perform well because it was expected of me, and now I put that same pressure on myself by default. There was a lot of pressure on me here at uni to perform well also. And knowing they were wrong didn’t stop me latching onto their words due to a desperate fear that I’d be letting everyone down if I didn’t achieve what they expected (I’d only just become comfortable with the realisation that I wasn’t going to do as well as I wanted, and then they reversed all of that). If you take my health out of the equation, people would be like “You’re the only person I could think of who didn’t get a first” or they’d remind me about our course mate who went to no lectures and somehow got a first. They’d see where I was thinking from. But people don’t detach me from my health. And it may sound stupid for me to be so hung up on this, but sometimes sweating the small stuff is better than being crushed by the big stuff.

There were two ways I could go with this – give up on second year and decide I was screwed before I even started (not going to lie, I almost did this) but I took the other road. I opened the university’s online resource, and I found the lecture slides for the three hours of lectures that I have on Monday (2 hours of human & molecular biology – that may or may not be the name of the module – and cardiac and respiratory physiology – anatomy & physiology were my favourite modules last year, and this is literally my favourite area of physiology to study – there’s an anatomically accurate drawing of a heart on my wall that I did the other day for goodness sake!) I read through the slides and made notes on an hour’s worth.

And then it happened.

I’d been in bed all day other than when I went to meet Portsmouth Uni Friend. I was sleepy, I thought from my night out last night (even though I got back two hours earlier than I would usually go to sleep). Suddenly a wave of awfulness swept over me – the unmistakable feel and taste of acidosis. I get no warning until I’m basically acidotic, and my body gave up compensating and it hit me hard.

There was a moderate panic sweeping through me. I laid there, and I could see the injection I needed (in order to stand any chance of stopping it) sat on the end of my bed, but I couldn’t move at all. I realised I had a problem. Usually I’d probably accept that this was going to end badly and flick over into a resigned state of feeling like everything was pointless. But I want to uni and life and so this time there was panic, panic because lectures started the day after tomorrow (or, as I’m writing this, tomorrow) and I didn’t want to miss any at all.

Hong Kong Uni Friend got back from her family’s home in Paris, and I’d said I would meet her at 11pm. By that stage, I wasn’t just dizzy, I felt like I was about to lose consciousness. I was holding back the urge to throw up everywhere, which meant I was definitely acidotic because that doesn’t happen until my pH is below a certain value. I cursed the universe a little bit. My limbs felt out of control. My brain had that horrible feeling you get when you’re far too drunk. I somehow managed to grab the injection, did the biggest dose it was sensible to give into a vein (I needed IVs, I wasn’t going anywhere near a place where I could get them, so I improvised), and then as I felt myself starting to pass out, I hoped I’d done enough to wake up. I almost called an ambulance. I could have and definitely should have, but I couldn’t – they’d have put me in resus and I’d have ended up with a central line and I’d have had to see doctors and face up to my health again and I’m not ready for any of that. There was a mental block there. NOPE. It did make me realise that I should probably tell the staff at my accommodation about my health issues (as they requested of everyone before we moved in).

I did wake up. I didn’t know how to stand, let alone walk. It took me a long time to pull on a pair of jeans, and I was freezing cold and seriously dehydrated, so I shoved on a large hoody and downed a pint of water in one go (which appeased the thirst for about five seconds afterwards). My heart was racing, because it gets very annoyed at acidosis. I looked grey.

I made it to the front of the building to meet Hong Kong Uni Friend, holding the walls along the corridor to stop myself falling over or zig-zagging all over the place. The two of us sat on the pavement on Mile End Road with our backs against the building we live in while Hong Kong Uni Friend smoked fancy French cigarettes. She looked like a different person, so much better but still fighting the voice of her eating disorder that made her feel huge when she was still so dangerously thin. I won’t tell you about what it put her through this summer, it isn’t my story to tell, but she almost couldn’t return because of how physically unwell she became through it. I wish there was more easily accessible support for people recovering from eating disorders, it’s such a difficult process.

We talked for ages, and it was nice. The fresh air was much appreciated (although thick with cigarette smoke) and gradually I started to feel less like death. She had to buy eggs, so we walked a tiny way to the shop just past the bottom of our building. Portsmouth Uni Friend bought me a melon and chicken & bacon tortellini earlier on in the day after I took her on a tour of my EMPTY accommodation building (seriously there’s never anybody anywhere – I talked to Hong Kong Uni Friend about it because she’s lived there for a year, and she nodded and was all “Yeah. Like you like being alone but you don’t like being lonely?” exactly – I like being alone because I chose to be, not because I have to be). Hong Kong Uni Friend bought me an expensive ready meal and a big bottle of lemonade. I cannot get over how amazing my friends are being. I don’t want them to buy things for me, it makes me feel awful and embarrassed and pathetic and ashamed  of myself. But they seem pretty insistent on helping out and don’t even want any money back in return. They say they probably owe me and they know I’d do the same. Hong Kong Uni Friend said it’s just what friends do. I can’t believe how many true friends I have. I am blown away by their kindness and generosity and it is an honour and a privilege to call them my friends. They are making me feel ALL the feels.

I went back to my room (after briefly seeing Hong Kong Uni Friend’s room with a view of… not Canary Wharf – I don’t even know what we were looking out over). Hong Kong Uni Friend was for some reason pretty amazed with my heart drawing. She was even more amazed that I drew it with my non-dominant hand and simply said, “Dude, is there anything you can’t do?” (Get a first at the end of my first year like EVERYONE expected me to? Successfully human?) She left me, and I lay on the bed and I couldn’t move. My limbs felt like jelly and I hardly had the energy required to breathe. I was seeing weird shapes and flashes, and my eyes couldn’t focus on anything. I felt so unwell (you know how unwell I have to be in order to call it unwell). And I didn’t have time for that. I’m not seeing any of my consultants or health teams (other than my cardiologist, because I want to run again, and I was meant to call him if I passed out but NOPE what he doesn’t know he can’t stress about or limit me with).

I lay there with J+J podcasts and a few vlogs playing in the background, and I lay there helplessly, too unwell by this stage even to panic… And I started to think about Bob Jr. (my insulin pump) I haven’t seen him since I disconnected myself for my surgery. I normally do about 8 injections a day if Bob Jr. is in, but without him I’ve been doing SO many more, easily double that, probably even more. It was a random thing to think about, but it distracted my brain until I moved on to going over what I’d just learned in the lecture slides (C-values, DNA melting, DNA reannealing…).

Swim trials are this evening. I won’t be going to those. I need to just spend the day in bed and I know I do. I feel rough. My body will take a while to recover. Last year I lived in denial and pushed on through states like this. Right now I know that if I want to be able to get on with lectures tomorrow and make it through the week, I need to take this time out to let my body get over itself. It is an idiot, and it is holding me back right now and getting in the way of my swimming aims, but I need to listen to it this time. I want this year of university too bad.

I’m never achieving despite something again. Nobody really has any idea how unwell I have been or how serious situations got (apart from my uni parents, who were there through the start of it) I don’t want a year like the last. This stops here and now.

I’m passing those exams at the end of this year “despite” nothing. And I now have reason to work for it and an improvement to make.

No way but through.