“The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.”

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

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

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

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

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

And then I remembered the poem that begins this post.

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

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

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

There is

No way but through.

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

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

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


3am Freakout (but it’s… good!)

3am. Wake up hurting. Wake up shaking and sweating and electric with fear. Another nightmare, no doubt about a hospital. Without really thinking, I play Pompeii and breathe a little easier as the sound of Bastille overrides the roar of my panic. What are all these notifications on my phone? The girls from the Bastille gig are freaking out about something. I’m being told to watch something in a separate conversation with one of them (the wonderful human who has travelled all the way from Manchester to see me). My IV pump alarms. I look to find 4 infusion sets snaking downwards and only three pumps. I stumble to the bathroom because the room itself feels way too big to be freaking out in and I don’t want to be anywhere near a hospital bed.

I go back to bed and glance sleepily at my phone. I see a message telling me to “WATCH THIS.” I’m like I’m terrified about tomorrow, I’m so so low, but she’s happy and that’ll make me happy. I expect it to be a YouTube video. And then I open the chat. And now my nurse is all

“How am I going to get you to sleep now?”

“I have never seen you this happy!”

“You’re wired!”

Because my friend, who came all the way from Manchester to visit me and spent the last two days sat in this hospital, went to a gig last night and met DAN SMITH (lead singer of Bastille, the band who make the music that saved all the parts of me that medicine kind of forgot / broke). And she got him to make another video for me (turns out she’s also been tweeting at him to come and visit me, which is just beyond adorable of her). I feel bad because he was just out trying to be a normal human and enjoy some free music, but also… This was SO well timed and as a result of that video, right now I just don’t care about my health situation. The reality that was eating me alive is buried beneath some words from a human who created the music that saved me. Yes, I may be sliced open within the next 12 hours but WHO CARES?! Yes, this situation is terrifying and overwhelming and I cannot deal with it but I DON’T HAVE TO FACE THOSE THOUGHTS RIGHT NOW. They are buried. They are down below rock bottom and I am up in the clouds. Because of a complete stranger with an incredible musical brain.

This is now the talk of the ward. I have been so sad that my consultant came in on his day off. I have been breaking to the point that everyone else was breaking with me. And when I saw that video (which started with my friend and then suddenly Dan Smith was on my phone screen and my sleepy brain took a while to acknowledge that he’d just said my name) I was so happy that people came running because they thought something was wrong because I spoke so loudly. 

I am beyond grateful. (My nurse is like “you were finally getting a good night’s sleep and now it’s ruined” but she also appreciates how amazing this is to someone who appreciates the music imagined by that man’s brain). 

Also, I’m smiling. Didn’t think I’d ever do that again. I’m smiling and it’s now past 4am and I just… I feel like I can face today now. I feel like I can face anything as long as this feeling stays, and if it doesn’t I’m just so glad it arrived for a little bit. It’s the break I needed. Bastille – back at it again with the saving me from my own mind.

That is all (please someone freak out with me because THE FEELS).

I am SHOOKETH. I really don’t deserve such incredible friends and such nice things. Life’s been rubbing salt in the wound lately and now I have like… some chips (or fries if you’re American) to sprinkle the salt on – wow I’m sorry for that metaphor I’m too tired to effectively think any more.


Beyond The End

I never in a million years thought I would write the post you’re about to read. I was planning something different. I was planning an end. I was so low that finally there was nothing left of me that had any strength to keep clinging on with nothing to actually grasp. My existential crisis became more of a… decision, and I made the call to buckle under its unrelenting persuasion. I couldn’t find anything tangible. Couldn’t think of anything realistic to hope for. Was so defeated (hate using that word), so full of a (pathetic) despair that I was willing to do anything just to stop feeling so unwell for a moment. I wanted a break from a reality that I could no longer cope with, and could find nothing to help me handle. That’s not a luxury life grants often.

And then one of the girls I met at the Bastille concert asked me for my email address. It was late. I gave her my email. Shortly afterwards an email popped up in my inbox entitled “Bastille Union Chapel” which is where I’d seen them on the 22nd of May and also where my heart had rendered me a useless heap on the floor while they performed. It was from one of their management. I opened it. After a short “we heard you had to leave” message was a link. I clicked it. A video came up. A couple of members of Bastille sat in a room on chairs, and said hi to me. They said they were sorry I had to leave, they wished me well, and said I could go to any show I wanted. This was confirmed in a later email, and it doesn’t even matter that I can’t afford tickets.

I was (and still am) completely baffled. I wasn’t expecting anything like that to happen EVER and also I just really don’t feel like I deserve something like that because well… it’s just me, and my self hatred tells me someone else should get that experience in my place. 

Suddenly though, there was this genuine smile on my face, and this weird feeling so pleasant and foreign it was almost uncomfortable – happiness. I was happy. I still am. It felt like this huge thing built up within me fighting against the doom and gloom, and finally all the things eating me alive burned away and I took off. It felt like flying. It felt like freedom from chains my health had placed around my mind. I had been so empty and full of desperation and despair I was ready for the end, and suddenly there’s this smile that won’t leave. There’s something to hold on for, an end goal, a reason to the pointlessness it felt everything had become. I didn’t think I’d find that. I didn’t know how to be happy. I thought my heart had ruined everything. It feels weird to be happy. It feels wrong. It feels kind of unnerving but I can’t help it. I get to see that music live again. The thoughtfulness kind of hits me more than anything – that this girl I’d only just met messaged their management and made this happen, and it turns out my friends had been emailing and tweeting people too (I thought they were joking). 

Now suddenly I want the heart surgery to work, where before I’d been hoping the guy would slip and just set me free. I have this great thing to look forward to beyond the void I have to go through first. They’ve given me something to hold on for. 

People keep telling me I deserve this but I don’t. Far worse things happened in the world that night and it’s hardly the band’s fault that I had to leave, but this has happened at just the right time. Spooky. Undeserved. But SO AMAZING. I’m beyond grateful. Beyond appreciative. Beyond the end that I’d been planning.

Bastille – 1, Skippy (my heart) – 0

Oh how the tables have turned. Turns out Skippy couldn’t wreck things after all.

Miraculous (part 2) My Unexpalinable Avoidance Of The Grim Reaper

“What’s the situation in resus? Do they have a bed?”

After sitting almost passed out in a chair but wondering if I should actually even bothered anyone, I lay on a bed in majors with the nurse wanting to move me to resus before she had even checked anything. She could tell from looking that I was in acidosis or some other sort of horrific mess, but neither of us had any idea that I should have been dead.

Really? Being taken straight to this area instead if the waiting room felt like an overreaction. I was embarassed and FREAKING OUT

They took my round to the resuscitation unit. The registrar used an ultrasound to try and find a vein. That failed. They called an ICU/A&E consultant to me – a guy who people treated like a king and they all looked to for guidance. There were five people around the bed I was on. They tried to put in a central line – got all scrubbed up in surgical scrubs and placed sterile drapes over me. They tried few times in my neck but there was so much scarring. They hit nerves resulting in pure pain. They at one point thought they’d punctured my lung. There was a large clot in the main vein feeding back to my heart that pushed the guide wire into my arm instead of my heart. That vein had looked bigger because it was congested due to the partial blockage downstream. The vein in the other side was tiny. A final year medical student from my university chatted to me through the whole thing. She winced with me. 

They got a blood gas from their failed attempt. I said I felt better, but I wasn’t sure if that meant I was about to get worse. I said I might not even be in acidosis, afraid that I was wasting their time, and the top dog ICU/ emergency medicine guy looked down at me and told me he knew I was without even seeing any blood results. Over and over I apologised for bothering them and they told me not to apologise even more times. Every member of staff was so kind and reassuring. By the time they came back with the blood gas my body was no longer able to compensate. My vision went, I couldn’t move, I couldn’t respond, but I could hear. 6.9. My blood pH was 6.9. And all these doctors stood around the bed seriously impressed that I’d sat an exam in that state, and alarmed that the paramedics hadn’t brought me straight into resus. I hadn’t wanted to bother any paramedics, and when I told them there were none and that is caught the bus and lost the ability to human upon my arrival they were pretty stunned. They couldn’t believe I was still conscious and had accomplished what I had (at that stage I was rapidly losing consciousness however). There was a collective panic. I didn’t have time. None at all. 

We had a problem. Everywhere you look in medical textbooks it tells you that a pH of 6.9 is fatal. 

A few of the Google search resukts that popped up when I Googled “blood pH 6.9”

The ICU/ critical care team were called by panicked A&E doctors, but the ICU/A&E consultant (who I shall call Dr M) stood by my bedside and refused to let them get involved when they showed up. He said I was far too sick to transfer my care and he wouldn’t even talk about it yet because he needed to focus on getting in a line to begin treatment and he hadn’t even been able to start trying to stabilise me yet. He later said that the guy wanted to try putting in a line but that it then becomes a challenge and I become nothing more than a pin cushion, and he wouldn’t have that. He said “she’s been through enough. I promised her I’d put in a line myself and I will.” Over and over he kept saying bed promised me but I didn’t remember. His promise seemed to mean a lot to him. Dr M doesn’t normally out in lines, but my access was so poor he wouldn’t let his registrars attempt it again, or anyone else who wanted to take a stab at the challenge for that matter. I laid there, fading fast, the kind and incredible Dr M talking away to me, calling me darling and actually saying my name. I felt safe in his care. In a hospital, I felt safe. I also knew I was in serious trouble.

They were so desperate they were in the end going to put in an IO needle (a needle drilled into your shin bone) but somehow Dr M got a small cannula in, and gave me treatment for an hour in hope of raising my fluid volume enough that he could find a vessel filled enough to get in a central line.

An hour later, with a doctor stood watching over me because Dr M deemed me too unwell to be left without the supervision of a doctor while he ran about chasing my blood results and calling ICU about me, my body stunned everyone again. My pH was 7.23. Dr M was delighted (you know you’ve been seriously unwell when the doctors smile and celebrate at the sight of a pH of 7.23, which would make them rush any other person into resus and commence emergency treatment). There was a collective sigh of relief and bewilderment. For hours all people kept saying was that they couldn’t believe how quickly my body recovered. An hour after that I was at 7.31, where the improvement stopped. It usually takes two days to pull me back from a pH of 7.1. A normal pH is 7.4-ish. A medical emergency occurs with a drop to 7.35. So 6.9 is… Significant.

Nobody could understand it (the unbelievable improvement in such a short space of time). But they were still scared – wary, unnerved. My brain has a nasty habit of swelling up in such situations and almost killing me, and Dr M was very wary because it was written all over my medical notes. He said my case was complex and that I was a high risk admission. He wasn’t comfortable for me to go anywhere other than intensive care and he also wasn’t comfortable for me to be moved until he was sure I was stable. I laid there with a hr of 140 and a dropping blood pressure. For a couple of hours those doctors did not leave my side. Dr M saved my life. And the entire time, he talked to me (even when I couldn’t talk back), and told me he lectures at the medical school that teaches half of my degree. He said he’ll probably lecture me at some point, and over and over told me to stop apologising and thanking him. He said I’d been remarkably patient and apologised for putting me through so much with all the cutting and stabbing around my neck and groin (where they eventually got a central line in). He defensively stopped anyone else doing anything to me, saying I’d been through enough. And again and again he spoke about how confused he was at the increase in my pH.

But my body had been through something it shouldn’t have survived (I’d been in acidosis for days). It was knocked for six. I couldn’t stay awake. My speech was slurred. Dr M started to worry that my brain was swelling, and so did the ICU team he was speaking to (they were called about me many, many times). They tilted the bed upwards to try and relieve any pressure that may be on my brain. More doctors were called. They panicked when I got sort of delirious and apparently complained of a headache as blood poured from my nose, and at this stage they immediately booked me for a CT. At 9pm the took barely conscious me in for a brain scan. I was like a vegetable. I had no energy to move and my breathing was shallow. 

Dr M stood at the end of the bed and told me it “doesn’t look too bad actually”. There was some artefact from the scanner machine, slight swelling on one side of my brain, and something that didn’t worry him because it only went through one layer. 

He relaxed a little then, but was still baffled by my miraculous improvement (both gases were checked, and run in the same machine). Although my pH improved stupidly fast, other results got worse before they started to get better. He sort of pleaded with me to stay awake, as they were all concerned with how drowsy I was. I still couldn’t move. I could finally manage to roll my head from side to side, but when they asked me to squeeze there hands I could only twitch my fingers. Dr M told me I had been very, very sick. He still couldn’t believe my miraculous recovery. The ICU team came down, and Uni Pal had joined WR Uni Friend (for a few hours they weren’t allowed back to sit with me because I was so unwell). The ICU team came down to see me again, a different shift this time. They decided I may get away with being on a higher dependency ward with a monitored bed. Dr M still wanted me in ICU, as he works there and kept saying my case was complex and they’d pretty much had to abandon protocols for my fickle body and I was an extremely high risk case likely to deteriorate rapidly, with potential for my brain to swell under the massive fluid shifts (I already puffed up everywhere else) . The medical team were reluctant to have anything to do with managing me but eventually I was moved to a ward. On the 11th floor, next door to the one on which I’ve almost died so many times. I am looking out on the view I looked out on almost exactly a year ago. This time I have my friends instead of my ex-Uni-Parents (but I wish I was on the ward next door with all the staff who know me and the nurse who calls me her daughter and the awesome HCAs).

WR Unj Friend stayed for the entire 10 and a half hours I was in resus (they usually only keep you in the department for a Mac of for hours because of stupid NHS targets made by people who clearly don’t appreciate that quality of care is more important than the speed of it). Uni Babr panic called my Accomodation and they said I wasn’t there (must have checked my room) so she called the hospital and was told that I was in the resuscitation unit. HK Uni Friend, who had, while I sat in the library (with uni pal and WR uni friend) messaging her the words I AM LITERALLY DYING with no idea how close I actually was to death, been mainly focussed on her coursework, how much it was stressing me out, and kept asking me to send her pictures of mine and explain stuff etc (which majorly annoyed the other two I was with, and baffled me a little at how my situation was seemingly overlooked).

WR Uni friend was astonished when I told her that throughout last year at university I’d been that unwell multiple times. She’s had no idea how bad it was until she sat and watched it (she didn’t see the bad part. They asked her to leave and for ages she sat waiting to be allowed to see me again). She sat reading her book while I drifted in and out of consciousness (remaining mostly unconscious) for hours afterwards, with the constant presence of a at least one doctor and six blankets (because my body was like an ice block to touch due to the fact that it didn’t seem to have the energy to regulate its own temperature temporarily)

“For me this is what I call life” Bastille, What Would You Do (this is a cover but I can’t remember who the original is by).

After 10 1/2 hours drifting in and out of the world in a resuscitation unit I’ve almost died in so many times… I finally had the energy to move my arms. so here is a picture of my kegs buried under a bajillion blankets.

I escaped ICU somehow.

I cheated death somehow. 

I very, very nearly met the end. None of us were expecting that pH. 6.90… Damn. I cannot thank the A&E staff here enough. They saved my life. They were so kind and friendly and they all told me I was very nice and tried to stop me feeling guilty for bothering them, saying that they didn’t have better things to be doing (as per my explanation as to my guilt) and that I was indeed worth all the effort and they were sorry that they weren’t fixing it. 

6.9 though. And I wondered if I was unwell enough to justify bothering them. If I’d have left it an extra hour… I’d have gone. 

I’d have gone.

This time there shouldn’t have been a way through. My body is superhuman. 

The things currentky keeping me alive. only three IVs. That is not a lot for me!

Sitting an MCQ test and getting the bus to Whitechapel all with a blood pH of 6.9, a miraculously rapid improvement after what I can only describe as mass panic amidst medical staff, swelling on one side of my brain… Pretty impressive for a Tuesday. It’s was a very long day. 

I’m too scared to sleep. The nightmares I have in hospital are all about hospitals and then I wake up in one. I still can’t move. I’m laying here like a rag doll and people have to move me and use a pat slide to get me from one bed to another. But I have my next bit of coursework with me and I hope to submit it on time. The world won’t stop just because mine is paused.

No way but through 

The Other Side

I love being in places where I get to escape from normal life – lecture theatres where I’m so interested and focused on what the lecturer is saying or on my friends’ conversation that I forget who I am for an hour or two, long walks through London where I lose myself in the sights of ever changing surroundings and awe overrides everything else, cinema screens and books where I can lose myself in an alternate reality…

I like whatever lets me hide from the reality that I can’t deal with. I am running (not literally – I wish!) but the things that I run from are never far behind me now; I feel the hot breath of the grim reaper on my neck (he just wants to say hi but I’m not ready to make his company again), I feel his hands clutching at my shoulders, closing too soon to get a hold (but only until I am too exhausted to keep any distance between us).

I had a good day, I spent my day running from reality, somehow turning my mind away from     as I met My Fellow Third Wheel after lectures and sat by Camden Loch talking and eating food.

I stood in a toilet cubicle halfway through the film HK Uni Friend and I went to see, and in the quiet, neutral space, I let reality hit. I know I cannot keep running and in that moment I thought it all through – the reality of the situation… And then I sucked it up, took a deep breath, and stepped back out into the world, wrapping myself back up in ignorance and denial… But there are emails in my inbox that I cannot ignore and there are things going on within me that I cannot hold off. How do you live when you know your body is trying to do the opposite? I don’t know how. You play pretend. You make believe. You just do.

There is nowhere other than… here. I have to carry this, and it’s a choice I made. For protection maybe? To protect who, I don’t know.

The end of the film, there was this other quiet moment where the titles rolled and I just sat there, briefly let everything catch up, and took a deep breath… And wanted to just… I don’t know, because that deep breath was all I needed to reset and go again. But there are these holes now, these fractures in the bubble of a denial that I cannot maintain.

I put on a persona and I try to maintain it – for everyone, for myself… I act like everything is ok when I know it isn’t, and most of the time it works, I am free from the weight that I carry.

I don’t want to be treated differently. I don’t want to be treated like a baby or made to feel weak and defective. I don’t like constantly being asked if I’m ok or told not to carry things or to take it slow, concern makes my skin crawl because it sets me apart and makes me feel defective and different. It means people draw attention to my health and it makes me feel a little alien (and when things are bad, I’m not an idiot, I do know, and I do stop, and sometimes it frustrates me that people think I’m oblivious). I don’t want sympathy or pity, and so I have to hide the things that induce all of the above. This is what lies on the other side of that. There is a reality that they don’t know.

“I will show you the view from the other side

This is the view from the other side”  – Hudson Taylor, Weapons

I will carry on (what other option is there – no way but through) but let’s be realistic. I don’t know how – not emotionally, but physically. I don’t know where this is going and I don’t know for how long this body can carry on like this. There is this huge great stretch of oblivion in front of me and I’ve no idea what lies beyond it. There’s fear. I pretend it isn’t there, but there’s a fear.

And on the outside, I deny myself and those around me any knowledge of that fear, of that intimidation. The squirming sensation that runs through me when I think about those emails in my inbox stays exactly there – inside me. People tell me to go to hospital for stuff as if it is this quick fix, and they have no idea what they are talking about. They have no idea what waits there – the doctors who I haven’t replied to for over a month now, the healthcare team whose emails and text messages I have left unanswered and unread (until Monday night, when I was slightly drunk and opened one in which other staff had been copied in, saying that multiple attempts had been made to contact me by multiple people and there were things we needed to discuss so could I be at the hospital tomorrow morning yes or no. I kind of had to reply to that one because it was worded so that I had to, and I  had to get rather drunk in order to even face doing so. I had to get drunk to deal with reality. In the email she asked how I was, as if she cares (I’m not going into why I say this, but these people don’t care about me personally). This is all about their jobs and ticking boxes, none of this is about me. I didn’t answer that part. She replied yesterday, foolishly thinking I was ready to re-engage with everything, in this message that went on about arranging appointments and moving ahead with treatment plans, and then again asked how am I doing?

Good question.

How am I doing? I can’t say the words to her, I can’t say them to my friends. I rarely admit them myself because why stop to pick through mud when I could keep myself clean and move on to other things? I don’t even say it here.

How am I doing?

I am tired all the time – not just sleepy tired (the sort that healthy people instantly think of and say that they feel too), but genuinely unable to keep my eyes open, barely able to hold myself up; it feels as though my muscles are sleeping too, under-fuelled and barely able to move my own bodyweight. I have been going home between lectures, trying to make notes and just falling asleep. On Monday I lost my entire afternoon. I’m not sure if I passed out or fell asleep, but I like the second option far better so I’m going with that. I’ve been doing this every afternoon – sleeping a huge chunk of my day away. I went to Brick lane with HK Uni Friend for more bagels that night, walking slowly, feeling every step, and got accidentally drunk on my return. I was up until 3am, at which point, unable to focus my vision or to see properly and with so many acidic bodies in my blood that I could taste them, I saved my own ass with injections that I still have no idea of the dosage, but that the amount of bloodied cotton wool around me when I woke tells me were given straight into a vein. I have this dizzy headache that goes right through me and most of the time I feel like I’m going to throw up, mostly due to the sickly sweet acidic taste in my mouth, but mostly because of what it means – the medical emergency that it means is almost fully brewed within me – acidosis.

I’ve started dreaming (I don’t class my flashback dreams as dreams, because they’re re-living stuff that actually happened and so much more real than a dream). I have nightmares about university, about what happens when this emergency becomes fully cooked and my body tries to make a break for oblivion… They are dreams where I am simply unsupported by university staff, or they try to kick me out or make me take a year out. It isn’t the near death that scares me, I’ve been there too many times, it’s what my uni will do, it’s being in a hospital, it’s losing another set of friends… It’t the everything else that my health tears apart.

Nobody has any idea how serious this is, how unwell I actually am (other than My Fellow Third Wheel, who, when I met him yesterday, pointed out that he’d been super worried because I have to be almost dead to say I feel unwell, and I’d told him that I felt unwell a few days before). Nobody has any idea what happens when I get home and shut the door. Most could not comprehend how I feel. The only thing I can compare part of it to is a hangover – the symptoms of a hangover are caused by dehydration and I become extremely dehydrated even though I usually drink about 16 litres a day. There are so many other feelings you add to that to get to how crappy I feel, and I don’t know what events to compare them to in a healthy person, but let me try this…

I guess combine that hangover with the flu, and then the energy levels of an ultra marathon runner who has just completed a race (y’know, where their legs can’t even hold them up any more and they are breathing deep and heavy), and then get your friend to stand on one leg on the middle of your chest while you’re sitting in a sauna trying to breathe thick air that won’t satisfy your lungs no matter how much of it you heave into them. Now add the kind of dizziness you feel when you hang upside-down for too long, mixed with the experience of trying to look through the lenses of a pair of glasses that you don’t need. Then add this feeling that your limbs are jelly and there’s the weight of a great big Labrador laid on every one of them when you try to move then, but when you just relax they feel like they’ve floated off. You’re cold, freezing cold, no matter how many jumpers you put on (or how many blankets you sleep under), even when everyone around you is sweating because it is so warm.

Mix this with the start of a migraine and the stage of being drunk where your words are slurring and you feel out of it but good (sometimes I just feel a little high when I’m unwell because my brain just can’t even). On top of this, you either haven’t passed urine for three days because your kidneys forgot how to kidney, and so have swollen up uncomfortably in your ankles and abdomen… or your feet are so swollen you feel like they might split and your abdomen is huge, but you’re peeing out about a litre every half hour (I swing wildly between all or nothing) and none of your clothes will fit over your swollen stomach which makes you feel overweight and horrible even though you know it’s just water. Along with this you’re tired like you stayed up for a solid 72 hours trying to finish your dissertation and can now hardly keep your eyes open (except you slept for at least half of those 72 hours, and you were just trying to human).

This is all eventually going to annoy your heart (which sometimes even causes the crazy water retention itself and is responsible for some of the junk above), but then adrenaline at some point gets involved, so throw in a heart rate of 160bpm with a blood pressure so low that you can’t really feel your peripheral pulse, and add a few palpitations and a pain in a very general left side of chest/left arm/left shoulder area. The fluid will at some point decide to accumulate around/in your lungs, so add a wheeze and uncontrollable coughing for a good five minutes where you cough until you settle into a crackling sound with every breath, which generates an even more intense dizziness. Now imagine that on top of that you’re passing out but you can’t let yourself pass out – your vision keeps fading to black while your eyes are open, and you feel yourself starting to go limp but somehow you hold it all together…

Then imagine that while all this is happening you’re sat in the middle of a lecture theatre (or on the London Underground, or in a cinema, or trying to write up your lecture notes) trying not to look as crap as you feel… And then you’re somewhere close to what my days are like (and you may understand why I have no sympathy for people who like to spend ages telling me how they are “dying” of a cold and couldn’t come to lectures yesterday because they had a sore throat. Please).

I’ve learned to carry on with feeling like this, I never know how I manage to and I never expect to, but somehow I haven’t passed out in any public places yet this uni year (although I do get stopped by concerned off-duty medical professionals or random strangers who note that I look like death). But then on top of that, imagine you start to slip into acidosis, and on a daily basis have to fashion your own rudimentary IV to try (and fail to completely) fix the situation.

When it gets worse than that, I fall onto my bed and just crash out for hours. I don’t wake up feeling rested. But it’s fine. I can deal with that, I just don’t know for how long my body can.

So I don’t know how to answer how are you doing? Especially when it is asked by someone who knows exactly how I will be doing and just left me to that situation previously. I have absolutely no confidence in her or the doctors she works with for that hiccup – they screwed up too many times, they came far too close to killing me with pure negligence (which their profuse apologies could not make better).

What she wants to hear is what everybody wants to hear, what I always say, and what only two people on the planet can see right through

I’m fine. (And I genuinely feel that I have no right to say anything otherwise really. Sure I feel a little rubbish and I look completely awful, but I’m not dead, and I’m not in hospital, and I am at uni and have friends, and I’m sorting my life out having finally ranted at my mother who is now acting like the other night never happened… I am so, so lucky. And this is just normal now).

We all ignore the other side. Everyone is happier that way, including me.

“It’ll cause you pain

It’ll make you cry

From the hopeless day to the sleepless night” – Hudson Taylor, Weapons

“If you don’t believe, it can’t hurt you” – Nothing But Thieves, Graveyard Whistling

But that doesn’t make it go away.

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:

  • 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).

Processed with MOLDIV
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.

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.


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.


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).


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.

Something About Nothing

I haven’t been up to anything interesting, but I feel like I should post about my first week back home because I have just been feeling all the feels. This may be an entire post of saying something about nothing…


I managed to post my little brother’s birthday card. After what can only be described as a financial shenanigan, I managed to buy just a single stamp, and then I no longer felt like the world’s worst sibling. I hung out with my Italian Uni friend for a while, we sat on Mile End Road while her and her friend ate crêpes, and then I found myself sat on a train in Cannon Street station with a rucksack on my back that I’d thrown a change of clothes into. We rolled out of Cannon street, the shard on one side of the river growing closer as we head towards it. The train curled around what I recognised as the covering over Borough Market, and I could see Canary Wharf and Tower Bridge as we crossed the river. The Gherkin, Walkie Talkie building etc. were clustered together behind us. It’s weird. This view should no longer amaze me but I can’t stop taking pictures of it. It’s all so familiar. The journey from that station itself felt like home.

I arrived in Sidcup and sat on the doorstep for 20 minutes waiting for my cousin to get home from school and let me in. When she found out I was going to be there for dinner she messaged me and asked me to stay the night, unaware that this was already the plan… But damn did it make me feel loved. I laid on the sofa just chatting to her all afternoon. It felt like home. My own food was still in their cupboards, they made the spare bedroom mine and it felt like I belonged in it, and my phone automatically connected to their wifi.


I relaxed… so much that when Auntie Godmother found out it was freshers’ week (and as we walked the dog told me to stay over for as long as I liked) and started telling me their plans for the next few days… I decided that I would go back. She left me a set of keys, but I posted them back through the door because that was what we’d arranged (we later realised how ridiculous this was), and I headed back to Mile End. I got back to my flat (can I call it a flat? It’s basically a room) at 13:56 and somehow 9 minutes later I had showered, re-packed my rucksack, cooked some mange tout, and was standing outside waiting for one of my old sixth form friends.

We walked to Brick Lane from Mile End (took an hour). I took a million and one pictures of the ever changing street art that’s sprayed on every wall. The restaurant we’d planned to go to was shut, so we headed to Shoreditch Box Park and looped back on ourselves. And that was when I became officially broke. We walked past a homeless man and his dog. He was thin and he wasn’t begging, he was just sat there focussed on the Staffordshire bull terrier that cowered against him on his lap, stroking it. And as another human, I couldn’t ignore that. Judge me all you want for what I did (believe me, I’ve been judged), but I went into the nearest shop and bought a tin of dog food and the biggest, nicest looking sandwich I could find (a Finest BLT) which then meant I couldn’t afford any food for myself (my friend insisted on buying me a sandwich though). The man said thank you but I felt kind of ashamed as I handed him this stupid sandwich because I wanted to do more and to me just handing over one sandwich that wouldn’t even last five minutes felt like such a stupid, almost insulting gesture.

I still feel bad about it, even now. Because it just felt so small, so stupid, so… Not enough. I felt even worse when my actions were later questioned, and I was told not to dare mention my lack of funds again because if I didn’t have much to give I shouldn’t have given it away… Humans are the most selfish species on the planet. How can someone even think like that? Without that money, I still had tins of food in my cupboard (yes, I’m down to tinned food), and a roof over my head. I wasn’t going to be any worse off, and that man was. I still stand by that decision, and I’d do it again. I don’t think it was anybody’s place to criticise that – I’ll do what I want. In a well-off area, nobody had given him a penny. People who could have helped, people with so much disposable income… did nothing. How?

We got on the tube and took a slow walk from Westminster to Charing X (we parted ways somewhere along the route). I love being by the Thames. If you’ve followed this blog for long enough you will know of my love of rivers in general, but whenever things used to go wrong or get too much, I’d find myself by the Thames. The smell, the sounds, the view… I will never tire of it. I had less than a minute to get on the train before it left the station, but I made it, and I returned to Auntie Godmother’s for a big bowl of chicken casserole and rice. I laid about on the sofa again and we all just watched TV together. Eventually, Uncle [Auntie Godmother’s Husband] walked in. My dad doesn’t usually say hello to me when he walks in, so when he greeted me with an upbeat “hello” and then said, “it’s nice to see you” I was a bit stunned. Auntie Godmother’s laugh filled the silence that followed as I sort of sat there scrambling through my mind for a response, genuinely not expecting that. Eventually I managed to spit out a you too.

On the subject of unexpected things, that evening I also got a lovely message from my next door neighbour (the one with the puppy who I spent ages talking to over the summer). She said she just thought she’d check to see how I was getting on in my new flat. She asked if I knew what modules I was doing yet and said she hoped I was eating ok and keeping well. She was just taking the puppy to his training classes but she said she’d speak to me soon. I felt all the feels and had to be retrieved from cloud nine so that I could actually put my feet back on the ground and walk out of the room to go to bed. I fell asleep watching vlogs.


I left again, posted the keys back through the door… And then bumped into Uncle [Auntie Godmother’s Husband] as I was walking to the station. He and I had both caught the cold that their younger daughter has had recently, and he was carrying a bag full of every cold and flu medicine under the sun. He told me that I was more than welcome to return that evening, and that if I changed my mind I just had to text and let them know as they had to go out that evening. I went back to Mile End and met another friend from uni (can’t think of a name to give her… She’s from Portsmouth so I guess she’ll have to be Uni Portsmouth Friend). We went to the pub and had a catch up, and then went to the freshers’ fair.

I went straight to the sports hall (I’d never been there in my entire life) and signed up for a load of sports societies, because I CAN DREAM and it was to awkward to say no or explain that playing rugby will not only probably break me but make my heart severely grumpy. So I continued to live in my dream/ denial and put my name down for a lot of stuff (I could have signed up for so much more but I didn’t). I heard a guy’s voice and looked up to see one of the first friends I made from biomed. He wrapped his arms around me and we stood talking. He commented on how different I looked, the shock visible on his face. He couldn’t believe how unwell I looked last time he saw me compared to how I look now. He wasn’t the only person to make this comment. So far everyone I’ve met up with has been like wow… You look like a different person, you have colour and you look SO well! I never understand why people say “I hope you don’t mind me saying” before sentences like that. I feel better. I’m still unwell and battling against some stuff, but last time these guys saw me I was as unwell as I’ve ever let them see me (apart from the occasional hospital visits, during which this particular guy saw a central line in my neck, nearly vomited, looked horrified, and left).

I felt like my health is no longer a barrier because it no longer feels like a problem. This is probably because I have shaken off all thoughts about it and am refusing to acknowledge it. I’ve accumulated approximately a million missed calls from the hospital over the week, a couple of unanswered and unread texts, and an email I refuse to open because those guys aren’t going to ruin my mood and everything right now. I don’t want to go through with their hell on earth treatment plan, and I don’t feel like they are thinking about my wellbeing in (what feels like) forcing me to go along with it. They seem to view me as a personal challenge and I feel dehumanised and meaningless as a result. So I’m done. My brain won’t even go there, I’ve just reached this mental block that is getting bigger and bigger, and it feels so right. I guess my brain is like a little animal just protecting itself from things it knows will hurt it. It’s already wounded and recovering, and its lashing out at things that may jeopardise its chance to feel normal again.

I then went swimming, because I was living in dreamland (from our uni it’s only £1 to get in). I walked through Mile End Park on the way home, feeling surprisingly good (I was feeling the effects, but not as awfully as I have in the past). It was weird to walk through the view that I sit staring at from my window. Emotionally, I felt so much better after my swim. I was refreshed, the slate had been wiped clean, and it was time to face the world again. Of course I signed up for the swim team earlier in the day – last year a guy signed up who couldn’t even swim one 25m length of the pool, and is now competing in an Ironman… There are no limits if you just go for it (this is what I tell myself, as I’m breaking myself to try and feel whole again). The swimming club flyer is now stuck on my wardrobe door. I kinda just like looking at it and reminding myself that one day that may be me.

A friend who I’ve mentioned on here but will not name now, made a very insensitive comment about a very serious issue that they were too self absorbed to understand. Things like that happen a lot with this person, and everything feels like a competition, even health issues (mental vs my physical stuff that this person knows about) are compared and it makes me feel exhausted just enduring that all the time. This person is a very nice person and a very good friend, but I hung up the phone and cried. Because it was about my sister and a huge event she went through (for which there is now a national memorial) when  I was younger that is genuinely horrific and awful and wrong, and took a limb and almost her life. And this person once again said they had it worse (I discussed what they thought was worse than an event this country still remembers every year with a couple of other friend and my favourite reaction was this: “NO! That is not the… NO! That doesn’t even compare! How could anyone think that… NO! I can’t even sentence right now! I’m that… NO!”) and failed to understand that it was what had been done that was so awful…

I wanted to go back to Auntie Godmother’s, but I also didn’t want to move. So I stayed put and just stared out of the window.


The Barrier Between “Me” & “Myself”

There are moments where I conclude that my heart (aka Skippy) is a poop, and want to rip it out, slap some sense into it, and then stitch it back into my chest again. I had one of these moments earlier. I think I am still having one of those moments, because clearly trying to co-operate with the stupid ball of muscle is not working (I mean seriously Skippy, you’re such a poop). I drew an anatomical drawing of a heart earlier, and it accidentally turned out (pretty much) the size of an actual heart. It’s on my wall now…Wait, I digress. The cause for my moment is as follows…

They changed the date of the uni & medical school swim club trials to this weekend (specifically, the day before lectures start) instead of the 2nd of October.

My thoughts upon discovering this were:

Thank goodness I checked (to see if they’d put up a time to meet) this week instead of next week (I don’t know why I did, maybe part of me knew).

And then:

Aaaaaaaaaaaaaaahhhhhhh! I have 5 days to magically be able to swim 100 metres in front of 2 coaches (one of whom is an ex international sprint and middle distance champion, the other of whom is a successful masters swimmer) and THEN take part in the hour long taster training session, and then team relays… And remain in some state to go to the first swimming social of the year. (That is absolutely no trouble at all for my 12 year old self. But as of last week I’ve discovered that I currently can’t. Even. Swim. More. Than 20. Lengths. Let alone keep going for an entire hour of warm ups and main sets and NOPE my stupid heart just does not agree). Oh yeah… There is also the whole point that my cardiologist told me not to swim but… I promise not to pass out in a pool and drown, as he fears. And denial keeps this safely (ok so unsafely) out of my mind.

I really, really want to be part of this team. It’s such an awesome opportunity to train with top level coaches and access amazing facilities (the uni team trains in the Olympic pool for goodness sake. The. Olympic. Pool… I mean, that also presents a huge issue to my current self because it’s 50 metres… And my heart does not agree with that). I really really want to take advantage of the social aspect of a swimming club, which is one of the main things attracting me to the idea of swimming again. I joined a swimming club by myself before (in that nobody else new joined at the same time as me) and instantly made friends each time I changed squad. Despite this, I’d really like to join with all the new people, so that I can make friends while everyone is awkward and in the same position, rather than trying to break into a friendship circle that already formed in my absence (as happens when you nearly die in freshers week and come out of hospital to find that everyone made friends and the ones you had ditched you).

There are social events every Wednesday (as with most sports societies), which is amazing, and means I’d get to hang out with this whole new group of people I’m going to meet on, a fairly regular basis. I’d like to be there for the first social event because I feel like that’s a bit of an ice breaker. I just can’t wait to have the kind of friends that you make through sport. My swimming/ football friends are some of the closest friends I ever had, and they’d come round my house before or after training… And I just miss having that team feel, I miss it like I’m missing my dog right now.

It would be so awesome to start fresh in the middle of continuing familiarity, to have my own thing and my own space with nobody I know and this whole other group of friends and everything, away from everyone I know. It will be a great opportunity to just put myself out there and be myself for once (something sport gives me the confidence to do) and I’ll be wildly outside of my comfort zone because I get weird about meeting new people and being by myself, but being the only person I know will force me to… be a sociable human, and make any friendships even more of an achievement. I kind of love that I don’t know anybody else who swims.

Having said that, their training sessions last for two hours… I can’t swim for two hours (well, my body could, but my heart can’t). The types of people on the social media page are mainly serious national level swimmers, although that’s just the top level squad I guess, as the development squad is for people who can swim 100m but stop at each end for a while, and the middle one is for people can swim 100m freestyle. To swim in the competitive squad I have to swim 25m of each stroke, which I can do and used to do so at every training session, but would currently kill me (I’m sorry, I know you guys couldn’t care less about details like this). Knowing that, I know I can make the team, as I can meet the requirements for at least one of these squads. But my heart will not be able to swim 100m and then do an hour’s swim session, let alone relays.

I remember club swimming. It wasn’t easy, it was relentless. And I started sitting out laps because I couldn’t breathe (thanks heart) until eventually I just couldn’t swim any more. I remember choking on the fluid that came from my lungs as I breathed heavily, feeling like I couldn’t breathe, with water catching in my throat as I breathed in and crackling into my mouth as I breathed out heavily (I’d have nightmares about this feeling where my coach screamed at me to swim through it, because at training he’d get super angry when I kept stopping and stuff). I remember the wheeze and inability to breathe that didn’t get better when I used my asthma inhaler. I remember the necessity to breathe so often messing up the rhythm of my stroke and making me even more out of breath. I remember the cramps, never getting muscle fatigue when training because I could never work hard enough to make my muscles ache. I got that after swimming 10 lengths the other day. 10 lengths isn’t even a warm up to a swim session. So my heart is the barrier between me and myself (I will always be me, but it is so much harder to be and feel like myself).

I’m so, so frustrated as I really want to go for this; I don’t want to pass up this opportunity, but it will probably completely break me. Also, I can’t afford to pay to get into the swimming pool, which means that I can’t train… Wait, does that also mean I couldn’t get into the trials even if I wanted to?  

Anyway, I am having multiple moments where I just feel like my health is wrecking things (I’m sat here writing this with feet so swollen that they feel weird – thanks for that one body. Heart/ kidneys… Can you not?). I don’t feel unlucky about my health, in fact I feel so fortunate that I’m not in a far worse situation and I’m incredibly grateful that I’m so healthy compared to some. It’s just that even at the thought of swimming again, this room feels so much less lonely, I have this new energy… I want to go for it… and yet I am completely physically incapable.

No way but denial.