How Did I Get Here? – Thoughts on Starting Another Degree

I’m not ok in any sense of the word; physically my heart is struggling, my body has decided to become spectacularly anaemic, and my health continues to hiccup. Mentally, I am in a complete crisis and have been for some time – I don’t know how I’m alive, simply because I’ve no idea how I persuaded myself not to ensure that outcome with my own hands.

But right now I am on a bus. A new version of the old London Routemaster that my granddad used to drive along this route for a living. I am on my way to a new university, to start a masters in cardiovascular science (a very competitive course at a world leading university, that somehow and for some reason picked me). This is a day that for the last three years was something I very hypothetically talked about from time to time. I still can’t believe I survived and acquired my undergraduate degree, let alone that I’m about to start a graduate degree that will hopefully give me the qualifications to make sure that someone else’s future differs from my past and my present.

I’m going to hold my hands up and say it has been a struggle. I denied myself any admission of this reality until I was completely broken. It’s hard. Everything right now is overwhelming and everything is a struggle I no longer have the mental energy to know how to face. But I’m here. I’m somewhere even I never thought I’d be. I’m terrified. I’ve spent days having anxiety (a very unpleasant new addition), nightmares, random crying moments and all sorts about this day, because I didn’t know how to do it. I have been dreading it. Now it’s here and I wonder how on Earth I made it. How am I alive? How did I manage to pass my third year without attending a single lecture, becoming bed-bound, losing most of my friends and replacing their messages with those of paramedics and doctors and other people who understood how it was simply incredible that my body (let alone my brain) could still function. The word inspirational has been thrown at me a lot and I still hate that. I am buckling and crumbling and have no choice but to keep living the life that has caused me to do that. It’s not optional. If it was, I’d be insane not inspirational.

Anyway. I am about to meet a group of new people at a university where nobody has ever seen me unconscious, where nobody has seen me vomit blood, where nobody has seen me in a wheelchair or being stretchered out of university accomodation. I can pass of as an “everybody else” and that’s refreshing. They have no idea how awful I feel both physically and mentally – how much both elements of me are straining to breaking point. They aren’t scared of my body or to be around me. They’ve never seen me in resus, they’ve never had to give me CPR or visit me in an ICU and sit for hours while I lay there totally or if it with no idea anyone is there at all. They’ve not been on the emotional rollercoaster that is my life. They’ve not received messages at 3am when I’m convinced this near death experience is the one where I finally run off with the grim reaper and there’s nobody else there to share the terror. They’ve not seen me have flashbacks in the back of an ambulance, not seen me vomit with fear at the sound of a siren, they’ve not seen me attached to 5 IV pumps whilst riding the drip stand as a scooter. They’ve no idea how much I carry and the effort I go to in order to hide it. They’ve no idea how much my health issues have knocked my confidence, how lonely I feel or how many years I spent in hospital missing all the milestones they hit. They’ve no idea what a miracle it is that I’m still alive, no idea that my former personal tutor gave me a superhero cape after my graduation because he had never believed someone like me could exist let alone get a degree and a decent enough one to get me into a masters programme.

As far as these people are concerned my biggest stress was deciding what to wear, moving into a new flat, the presentation I have to give tomorrow. They have no idea of the wounds haemorrhaging deep inside my soul. They’ve no clue of any scars or how deep they run. I’m just and everybody else today. And that’s why I’m nearly crying on a bus.

Those days you don’t know how to survive? Those days where you can’t go on any more? Today, like most of those before it, is one of those. And I swear to you my former self was very right.

There’s no way but through.

All you need is half a chance. You’re still here. You’ve survived 100% of the days you didn’t know how to, got through 100% of the things you didn’t know how to cope with. If you can do that, given your record, you can do today. You’re doing great and it doesn’t matter if you have no idea how you got where you are right now, what’s damn impressive is that you’re reading this right now. Thank you, I’m grateful but I’m also rooting for you.

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“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.

Not Compatible 

“That’s… Not compatible with life.” My friend, a consultant anaesthetist said when he called me up this morning and discovered I’d had a pH of 6.9. That was when I knew it was bad, when the thin layer of denial I’d slapped over the wound so that I could keep functioning evaporated and left an ugly mess. This guy plays everything down. It’s not something you want to hear from the mouth of any doctor, but least of all this guy. I knew I was lucky to be alive. I’m only just beginning to accept quite how incredible this fact is, but not enough to let it scare me yet (so maybe I haven’t accepted it at all. It feels surreal. I felt unwell but I had no idea…)

“They shouldn’t let juniors try on you. Don’t let them.” He said when he heard about the difficulties in getting a line into me, 

“The consultant wouldn’t let them anywhere near me.” I told him. He asked about permanent lines and I shut that conversation down. The nurse at this stage bluntly told me to get off the phone to him so she could do some stuff. Today I feel forced and manipulated and bullied and out of control and that isn’t good for my mental state at all. They are busy, they are letting it impact their treatment of their patients, and they have no idea how significantly their attitude can change the way a person feels about their hospital experience. 

I’d been woken up around half an hour earlier by Dr Survival. He’d apparently been to see me yesterday morning but had left me to sleep. This morning he decided to wake me up. He’s been emailing with my usual consultant for this hiccup and it’s going to take a week before we can begin the new treatment plan. I’m not staying here for a week. I kinda made that clear. Our plan is now to shove me back onto my normal and ineffective treatment plan for the week, and try and get me off of the IVs by at the latest tomorrow morning. I was in bed 16 (the one beside me) a year ago tomorrow. I don’t want to sit and watch bonfire night from this ward again (especially as I now don’t have a window beside me so kinda technically can’t).

The view from my bed. The window on the right (with the gherkin building) is by bed space 16; the window on the left with a faint view of the shard is sort of by bed 15.

I woke up with only 2 IVs. 2 drip stands became one. After Dr Survival and his henchmen left I was streamlined down to 1 IV and my catheter was finally removed. I made it shakily to the bathroom for a wash. The staff had no idea how to transition me onto my normal treatment plan so I had to fight for them to do it right, and my overworked nurse was blunt and moody which made the whole thing so much more difficult for me because it made me feel like dirt and I already felt like a bother here. 

No longer need both drip stands. Celebrations!!

My IV is running through the cannula in my hand, so the junior doctor walked in and said they wanted to remove the femoral line immediately and they will “just cannulate you again” if they can’t stabilise me and have to restart the other infusions. Clearly my notes had not been consulted about this issue. You don’t just cannulate me. It takes hours and ultrasound machines and consultant anaesthetists and at least 20 attempts before they give in. There’s no need for it. No need to go through that when I have a femoral line in FOR A REASON. Somehow, empowered by my pep talk from a consultant anaesthetist who had told me exactly what to allow and not allow (and therefore given me confidence because he’s a consultant and coming from him it gave me confidence to fight), I found a voice and refused any more cannulas. She swiftly changed her mind at that point, saying she’d wait until I go home before the femoral line is removed. We don’t really know when I will be leaving (I’m determined that it will be today) but as soon as this femoral line is out I’m walking. I haven’t told anyone this, but I know my mind well enough to know what it will do. 

It takes a while to stabilise me off of IVs, which is where the problem usually arises because people freak out when my bloods start to settle to their usual abnormal (my body also freaks out, having become unaccustomed with the awfulness it usually drifts along in). While I’m still on IV, before we’ve even tried taking me off, they’ve done my discharge letter. This pleases me greatly because I assume it means I can just leave. If my transition doesn’t go smoothly and the consultant wants to keep me longer I don’t think he actually can now because he’d have to re-admit me I think… So technically I am free from their… Terror. Feels good to know.

These people are worryingly clueless about my health hiccups, still have yet to give me a single tablet for me heart or kidneys, and are worrying me a lot as a result. I had to correct their plan to one that gave my body at least a shot at not deteriorating again, because their medical knowledge didn’t seem to stretch far enough for them to understand how to medicate me properly. They also seemed completely unaware that I had a femoral line even though I was connected to multiple IVs and only one of them went to a cannula that they could see, and everyone forgot that I can’t really walk.  

So I waited for everyone to leave me alone and took myself to the bathroom with a mix of the clothes I came in with, clean underwear, and a pair of women’s rugby team jogging bottoms from WR Uni Friend, and I got dressed in something other than a hospital gown. It felt amazing. I feel human. The femoral line is out of sight. I feel so human that I now refuse to get back in the bed. There’s a mental block there. I cannot. I just can’t. 

I can’t bring myself to get back in here (it hasn’t been changed and there’s a lot of my blood all over the sheets under those blankets)

I meant it when I said I had acquired an extraordinary number of blankets. Somewhere among these is my open laptop… It’s well and truly buried

Bed 15 is temporarily empty while its patient is at an appointment, and had a window, so I’ve made my way over to sit on the window ledge and stare out at central London. There’s something about staring out at normality that detaches me from the distress of being in a hospital. It grounds me and kind of calms me a little. I used to sit by the window all the time whenever I was here before. Sitting here at the minute I feel dizzy and spaced out, and my face and feet feel swollen and tight because I’m all puffed up with fluid… But I can see the entire world from here (or so it feels).

I want to run out into this view. The city I love.

Time to listen to Bastille until the dust settles around me.

The view from the side room I was in last night. Can just about see Canary Wharf. Almost the view that I get from my flat, so it got me a little. Fireworks started going off super close and “Batman” and I got our own private display. Apologies for the reflection of my room in the glass, I couldn’t leave the bed at this stage.

No way but through.

Uncle.

Cry Uncle (phrase) informal. 

“To surrender or admit defeat”

Uncle.

I thought that was it. I honestly did. I’m not sure if you’re familiar with the sort of situation in which you have enough scientific knowledge (and experience) to know that you are in the process of dying (and fast). You may be the sort of person who says they feel like they’re dying with no real idea of what such an event would feel like. I am not using the phrase to exaggerate how awful I felt. I felt myself going. I couldn’t move my thumb to dial 999 on my phone. I couldn’t even hold the phone. And right after that moment it was as if time slowed, and I crumpled. I thought I was going to be found dead on the floor, and as I hit it I accepted that… that was it. That’s the thing. When you’re that ill, and you’re that close, you don’t have the energy or the capacity to panic. I was this useless, losing heap of person on the floor, and nobody even knew I was there.

And it was fear that put me there. Not entirely, but it helped. I knew I was in acidosis when I had to make a detour from Embankment station to a McDonalds on The Strand because I felt like I was going to pass out. I was barely conscious. I couldn’t hold my head up. I couldn’t stand or walk and my friend had to go, so I stayed slumped in a chair. Each time I blinked I’d open my eyes to find a new set of people sat all around me. I almost called an ambulance. I knew I should have. But I was too terrified of being in a hospital and of doctors… So I just hoped.

Eventually the interventions I’d taken did enough that I somehow made it back out into the world. I could barely lift my legs. I was so slow. It was so much effort that I couldn’t breathe. I was fighting the urge to both throw up and pass out as I made my way to the tube. Eventually I made it to the district line. I was drifting in and out of consciousness in my seat, yet I didn’t get off at the stop for the hospital. I knew I needed to go. But I was too scared. This crippling fear choked me and I freaked out at the thought of a hospital. So I didn’t go. I was so infuriated at myself, fighting with this monster of fear inside of my head, but it won. I don’t know how I got back to my flat. I remember not being able to see properly or having the energy to breathe. I remember opening the door. I remember ending up on the floor, no energy to move at all, barely any energy to breathe; I remember pumping more and more medication into my veins and hoping. And as I lost consciousness I remember the regret. The emotional response wasn’t what you’d expect. I’ve been in situations like that before. And it’s just this quiet acceptance.

I remember opening my eyes two hours later. Cold. On the floor. Hurting. Light-headed. My mouth dry. I couldn’t see properly at all and I felt like all of me was shaking (it wasn’t). I knew it was bad.

How low was my pH? What would my mum say about this? She’d be so annoyed… Wouldn’t she? And OH NO HOSPITALS.  But I’d have called 999. I was desperate enough to. But I didn’t stay conscious long enough to call an ambulance.

After a few minutes I sat myself up. My vision went and I felt extremely light headed. I was drifting in and out of an unconsciousness I couldn’t fight. Until it took me again.

I’ve no idea what happened. It wasn’t like a sleep – it was like I blinked and suddenly time had advanced by an hour and a half and I was pressed up against the floor, freezing cold and so, so thirsty. I was just over a metre away from the sink. But I couldn’t move that far. I couldn’t move at all. I felt light headed laying down, face first, uncomfortably crumpled on top of myself. I should have been scared. But all I could think was How am I alive? I’m alive. I’m actually alive… And I breathed a sigh of relief. I smiled inside because I didn’t have the energy to actually smile, and I let relief flood through me. I have never been so thankful. I closed my eyes (I couldn’t actually keep them open) knowing I was unwell but pretty sure I would wake up. And I knew. I knew the fear had won. I carried on for too long that time. And I nearly paid the ultimate price.

An unspecified amount of time passed, and I decided to investigate my pulse rate. It was fast. Too fast.

All my friends were sat doing whatever normal people do on a Friday evening, and I was laying on my floor having almost died. The whole world was oblivious. And my mum was due to pick me up in a few hours.

Since I started uni it has been my entire life. My world. The only reason I didn’t end it all on some days. On Thursday night I was losing my mind over uni (that’s why I held on too long, because after the events of last year I am terrified to become unwell). Suddenly, in that moment, I couldn’t care less about uni. I felt like I was dying because I very nearly did. I was nowhere near out of the woods. I couldn’t stay awake. I was messaging people like nothing had happened and listening to their problems, and they had no idea how serious the situation was. I felt too guilty to tell them. I didn’t want to worry them and I didn’t want anyone to be angry at me, because I’d been asked if I needed to go to the hospital and my mind was all

YES. Weeks ago! I’m seriously unwell right now

I got to the: I’m in full blown acidosis.

I even ended up asking if we could abort our stationary shopping under the admission that I felt like I was going to collapse imminently. But I followed it up with an, it’ll be fine though. No need for that. Don’t worry… at the sight of the concern that made me squirm.

I hadn’t done anything I was meant to do. Usually that would have sent me into a panic, but I laid on the floor knowing I was going again – my head feeling weird and my vision going, and my words severely slurred (I tried to tell myself I’d be ok). And as I laid there I kind of stopped and took everything in.

And I realised that I’m killing myself for this degree. Before I even went back to my parents’ house and saw my dog, I was considering giving up on uni. And I stayed longer than I planned to because I couldn’t bring myself to leave my dog, and I couldn’t face uni stress on top of the stress of playing Russian Roulette with my existence every day. But I’m back here. I don’t want to be. I’m terrified. I’m done. University has always been my saving grace. It has always been this huge source of motivation for me and now all of that is gone. There’s no thirst for knowledge. Because emotionally (and actually) I’m dying for this degree.

And for the first time that doesn’t feel worth it. For the first time my life feels like more than university, because being here has made me enough of a person to feel that I could survive away from uni. Second year is so much stress. I feel so stupid and inadequate and I’m far too unwell to keep up with the work. And I finally, finally asked myself… what’s it for?

And I don’t know any more. I got so wrapped up in the stress of trying to stay alive and the immense pressure I put on myself with uni work, that I’ve forgotten where I want to go. I just want to live in a place big enough for me to have a dog, and I want to enjoy every second of this Russian Roulette.

The reactions to this have been mixed. My parents don’t support the idea, and my friends seem to think it’s a simple matter of university stress. But I’ve nearly died way too many times because of the pressure I put on myself to attend and perform (not even well) at university. And I’m scared now. It scared me. Sometimes in life there is fear. And sometimes that fear wins. The most helpful response I got was from WR Uni Friend (who I’d been with on Friday when it all started to hiccup). She said that she thought about dropping out due to the stress and her dad had told her something about planes.

She said (that he said) that there’s a point at which a plane is so far down a runway and has built up so much speed that it HAS to take off. We’re almost halfway through our degree, and soon we’ll have endured more than we have left to face, so we’re basically at that point.

So why do I want to cut the engines and crash land?

My first year of university broke me. I nearly died a lot. I’m still killing myself (quite literally) for university. And that was ok when university was all I had. But now I think there may be more to the world.

I still love university. I just feel inadequate here. I feel I don’t belong among such smart people (and have no idea why everyone seems to think I’m so smart because I’m really not). And I’m just worried that I’m going to miss too much of it to carry on, or end up dying for this degree.

I’ve been told that I’ve overcome so much that I have to finish this degree because I can’t turn away now. I’ve also been told to put my health first. My friends seem to think I’ll come back. I won’t. Because I won’t get better. This situation won’t change or improve so I can “take a year to rest up” or “wait to improve” and be equally as unfit to study when I attempt to again. It’s this shot or no attempt at all.

And I’m sick of aiming for a target that’s so close to vital organs. I want to just point this gun at the sky and fire. Because I feel like I’m done. I don’t know how to do this any more, how to carry on… And yet I’m sat here. In London. And I’ve been to uni today. Because I can’t let go. I’m strangely determined and a shred of my denial still holds on.

“I won’t cry uncle having come this far” – Frightened Rabbit, Blood Under The Bridge

I don’t know what I’m doing or where I’m going or what I’ll do. I always get a little shaken up and just react impulsively after I’ve come so close to death (like when I properly, properly shouldn’t have made it through kind of situations). I’m not making any notes or anything at the moment. I need a break. I need to take off the pressure. I’m doing the bare minimum until reading week – I’ll go to lectures but I won’t make notes before or write them up afterwards; I won’t spend my days reviewing last week’s lectures and listening to recordings of them and making revision sheets of their contents; I won’t beat myself up for not doing those things. I’ll do my coursework and that’s it. And then during reading week I’ll have a think. And if I decide to continue, I have a week to turn it around and catch up. (I missed over half the taught programmes last year, sat my exams while in acidosis and while rather seriously unwell, and finished 2.1% away from a first. So really I kind of know that I can afford to let things slip a bit… I just need to learn to accept that). My brain just can’t even university right now. It has finally confronted the whole issue of its own mortality and the stress of trying to maintain the life of a body that keeps trying to kill itself, and it doesn’t know how to handle normal life stress on top of that. It still can’t even comprehend how it’s alive (which usually happens after the grim reaper has had such a close encounter, and leaves me stunned and unable to care about trivial things for a week or two).

Who knows what I’ll do.

But I do know there’s no way but through.

Waiting For The Rain To Pass

Over the past few days I planned to get my life back on track in terms of catching up on work (we’re three weeks into university and for the last two weeks I’ve felt like I’m two YEARS behind with work) and tidying my room (when I ran out of floor space I knew I had a small problem – this was confirmed when I filled not one, not two, but NINE bin bags yesterday). My body, as always, had other plans. I usually wake up at 7am every morning without fail… And then after a few minutes, find my way back to sleep. This is generally only for an extra hour, but for the past few days I haven’t left the land of dreams before midday. In fact my body has even clung to sleep well into the afternoon. Getting “normal people sick” on top of my body’s usual state of affairs has completely wiped me out. I tried to work from my bed, but I was too tired and unwell to properly focus and at some point just crashed out again. All I’ve done is sleep, which frustrates me a lot, because over the past couple of days all I’ve wanted to do is go for a run.

Yes, I apologise, back to this obsession with wanting to run again. I’m wearing out the record I know, but I am craving a long, long run. I told myself I’d compromise by just going for another long walk, but my body isn’t even up to that right now (plus, I am currently sat listening to the roar of rain so thick and heavy that I can no longer see Canary Wharf, and as much as I love the rain, I don’t want to go out in it right now). Sometimes it feels like my health is like this rain – slowly blocking out the good stuff, trapping me inside as I wait with no idea when things will start to improve again. Within myself I feel like physically I could handle a run. My brain asks how hard can it be? It used to be effortless! On the other hand, I also know that leaving the bed will be a struggle, and I am fighting to be awake but clinging to this part of myself that was not made to be stuck in bed – the part of me I thought was dead and that perhaps would be easier if she just would go away – the part of me that loves the outdoors and doesn’t know how to sit still.

Processed with MOLDIV
Canary Wharf going… Going… Gone!

It’s so difficult feeling like one person, and being another. Two different versions of me are sharing this body – the person my brain feels like I am, and the person my body has forced me to be. It’s difficult to keep both of those people happy, because they both want and expect such vastly different things. I know which one I should listen to, and I know which one I want to listen to. On rare occasions, they sing from the same hymn sheet – last weekend for example, when I walked all the way to Hyde Park… But afterwards they remember their differences and I end up unable to leave my bed.

What’s making it even more difficult for me at the moment is that my friends are starting to discover the power of running. Uni Babe is 5 weeks into a couch to 10k running plan, and has on a few occasions mentioned how amazing running makes her feel in terms of relieving stress. WR Uni Friend also runs. I thought with this newfound discovery they may understand why not being able to run makes me so… Y’know… (I don’t know how to explain it. Frustrated?) but I think because it’s been so long since I ran, people don’t expect me to miss it any more. The thing is, I’m sort of like a husky – I need a good long run every day or I have all this pent up energy that turns to frustration and makes me irritable. Running was as much a part of my daily routine as brushing my teeth, and I feel like I’m hardwired to run. In my “running days” if I didn’t run, my mood would suffer. It was my coping mechanism. But slowly the runs got harder. And then I’d pass out. And then I’d just pass out without running at all. And there was no more running.

I made all these ambitious plans in my notebook when I set out on my journey to try and get back to running (you can follow my progress – or rather, lack of progress – here). I wanted to be able to run 5km by the new year. I wanted to run a 10k in February for Cancer Research UK. The weekend before my birthday, I wanted to compete in my first ever Park Run in Mile End Park. I wanted to join a running club in the spring, and run the exam stress away in the summer… WR Uni Friend turns 21 five days before I do, and wants to complete a 10 mile running event through the Scottish Highlands on her birthday. I kind of pleaded go along. Camping and running… And Scotland (I. Love. Scotland)… Perfection right there. Let’s not even discuss how overambitious and ridiculous this was of me.

But at the moment there seems to be this huge battle going on inside of me. I feel like something is missing, and I am craving whatever it is. I want this sense of belonging, but I don’t want to keep bothering Auntie Godmother by staying with her and her family (even though they are my relatives so it’s totally fine). I want to get closer with my friends but I feel like I just burden them too, especially with my health how it is right now, they don’t need to deal with that and I’m scared they’ll ditch me like almost every other person I’ve ever been stupid enough to think was different. I want to run so, so badly. I want to join sports clubs. I want that feeling of community, something to focus on and something to do. I want to feel normal, even though I’m not. That’s it. I just want to feel like a 20 year old university student. I want to forget all the health stuff. I just want to feel human again. And the more my health slips (and therefore the more I become incapable of sport and socialising and travelling to Aunty Godmother’s) the more I crave these things, the more necessary they feel, and the more I tear myself apart. But not last night. Last night denial and hopeless dreaming won.

Last night I went to a house party in Uni Babe’s new house. I’m completely socially awkward and shy until I know someone, so I either like huge crowds where nobody pays any attention to each other and I can blend in and just enjoy the music, or small groups of close friends. I went with WR Uni Friend and another of our friends. I got extremely drunk on two ciders (ok three in the end) and a single shot of schnapps diluted in A LOT of lemonade. I think I spoke to some people. Some new people. One of Uni Babe’s flatmates gave me a huge fluffy coat to wear, and somehow I ended up stood with a large group of people smoking some interesting substances by the canal at about 1am. They were still in a better state than I was. I was offered many drugs and a lot of spirits, and somehow had the drunken sense to turn them all down. I get totally honest when I’m drunk because my filter between thought and speech dissolves, so I probably mentioned my health, but would also have been honest enough to say I didn’t want to talk about it (I hope. I don’t like to just tell random people).

I remember WR Uni Friend basically mothering me (as she also had to do the first time we ever met), and then I somehow ended up in my room wearing a fluorescent jacket (the kind workmen wear) with a box of chips and onion rings from a local chicken shop, and woke this morning (ok, this afternoon) to a message to myself written at 4am telling “your sober self” that I’d showered because too many people touched my hair (I have curly hair, people seem to think that they can touch it without asking or even knowing me. It freaks me out because PERSONAL SPACE and also I DON’T KNOW WHERE THEIR HANDS HAVE BEEN. And also, BOUNDARIES). I’m not going to lie, it’s the first time I’ve ever been to a house party. I liked the people, although there must have only been about 15 at the absolute most, because people were turning up and then just dragging everyone out clubbing with them. I think I tried to talk to people, and I remember thinking everyone was really nice and far too… Comfortable and secure in themselves in a way I’ve never been, which mystified and also impressed me.

The air ambulance just flew past my window and reminded me what I have. I know I’m lucky, and I don’t mean to sound ungrateful. Somewhere out on the horizon I’m staring at right now, somebody is in serious trouble. They can’t wait to get to a hospital, so the hospital is flying itself to them.  Who knows if they’ll even make it into that helicopter alive, or if they’ll see tomorrow even if they do?  I’ve laid in resus and seen the states of the people the air ambulance guys (who are very friendly) bring in – people so covered in blood I’ve no idea what they look like, intubated people who cannot breathe for themselves, skull fractures, crush injuries, stab wounds, sick children… (I’ve been in resus a few too many times). From the window at the end of my corridor, you can see the hospital where the air ambulance is based. Each time I leave this building I look over at the view. Every time I see that helipad empty, or watch the helicopter take off or land, it makes me stop and think of the sorts of things I’ve seen. It humbles me and hits home and makes my heart lurch for an individual who I’ve never met.

And then I snap out of my stupidity, albeit briefly. I used to think that all the time there were people worse off than me, I had no right at all to feel unhappy (and I’d be utterly disgusted and sickened at myself for feeling low when I did). I’m slowly learning that it’s ok not to feel ok, that there are many things about my situation right now that aren’t ok and that any person would struggle to cope with. But I can’t help feeling lucky among all of those other emotions. I can’t help releasing the pressure I’m placing on myself to try and do all these normal human things, and taking a deep breath because… I can afford to let everything slip. I have tomorrow.

Today, if my body can’t human, and my brain can’t focus, and I’m in too much pain to do anything other than curl up and grit my teeth against it, or I’m just having a moment… That’s ok. It’s ok because I have a whole new day tomorrow to turn it all around. And a lot of people won’t have that, some of them don’t even know.

Right now I guess I need those two separate versions of myself to be stuck in this body. I need the person my body has forced me to be, to keep me grounded and humble and remind me to appreciate and be grateful for the simple things (in a way that until I met the grim reaper and was old enough to understand the significance of our encounters, I never really was). And I need the person my brain feels like I am – that hopeless dreamer that generates huge bubbles of denial and tells me that yes I will run again and yes I’ll swim again – to give me whatever it is that helps me carry on, to get me out of bed in the morning, to give me something to aim for even if it is far out of reach. Sometimes I’ll get caught up in the crossfire between these two parts of myself, sometimes I’ll tear myself apart and feel inadequate and do stupid stuff like try to run or get stupidly drunk at a house party. And sometimes I’ll do anything, anything just to feel alive, to remind myself that I am. Sometimes I feel this temptation to do everything wrong and rebel against a body that rebels against me. But that’s just how it goes – the ebb and the flow, I guess. Like the rotor blades of that helicopter my thoughts fly round and round at speeds too great for me to latch onto them.

Doctors have told me that the way I live isn’t a life – they want more for me, they say that the way I go through my day isn’t how a 20 year old should be living and all they want is to try and find a way to somehow get me to achieve that. There are moments where I think like them. Most of the time recently, I completely fall apart. But more often than not my brain refuses to accept their view of me, because my life is more than enough. I am who I think I am, and some of the time my life will be exactly what I make of it (the rest of the time it’s totally out of control), so I’d better make sure I appreciate what I have. It isn’t what I pictured, or what I hoped it would be, but I am grateful for all that I have and simply still grieving for some of the parts that I have lost.

Oh hey, the rain stopped. That’s exactly the point – rainclouds pass.

No way but through.

Bending, But Still Breaking

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

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

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

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

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

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

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

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

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

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

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

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

I feel like life just said this to me…

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

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

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

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

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

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

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

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

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

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

I’m so scared about how this will end.

How will it end?

Here’s to hoping, I guess.

No way but through.

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

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.

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.

Despite Nothing

“You were so ill.”

“You got 3 hours of sleep in a week.”

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

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

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

“Despite your health you did great.”

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

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

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

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

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

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

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

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

My argument was:

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

My friends in response were all:

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

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

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

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

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

And then it happened.

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

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

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

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

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

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

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

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

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

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

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

No way but through.

Can, Can’t, Shouldn’t… But Will.

It isn’t even a case of mind over matter. My mind is there, living in the synthetic illusion that my body is capable of the things I want it to be capable of. It is ready. In my mind, my goals are perfectly achievable, and I seem to have convinced myself of that.

But I am physically incapable. My body just can’t. I push it, I become convinced it can and will manage the things I ask of it and it just isn’t there – my heart just isn’t ready. I got it into my mind that I just needed to push through the difficulties, that after a few minutes longer (than is comfortable) of attempted gentle exercise, the awfulness would subside; but four hours after swimming a mere ten lengths, I found myself paying the price. For the first time there was disappointment alongside this sensation. Because when I say that I was paying the price, I mean that in my physical state I was bankrupt. Was it worth this? (Yes) Really? (…No. Wait, why do I even have to weigh up these odds?) I laid out on the bed, feeling as though I were breathing the air from a steam room – it was thick and heavy, an effort to inhale, not satisfying to my lungs no matter how deeply or slowly I breathed. I had no energy, my heart was racing and there was an ache in my chest. My body just cannot.

No amount of hoping or denial will change that. My dreams of running or swimming with university societies and settling into the structure of regular, casual training (not to compete… ok to compete at some stage… but for social reasons too) are exactly that – dreams, separate from reality. Let go. Come on, accept. Move on. I thought to myself over and over.

How do you do that? How do you give up on a dream that to most people is an effortless normality? How do you stop reaching out for all that your teenaged/ childhood self wanted? Not success, not major competition (although low level competition would be awesome) I just. Want. To run. One lap of a track. One swimming session where I don’t feel like this afterwards, where my muscles can work at maximum effort for even half a length – proper maximum, not the limits my heart imposes upon them but their true capability.

The answer is simple. You don’t.

You just don’t.

You live for the moments before those that make you question it all.

You accept reality… and then you dismiss it.

I went from, I can’t do this to my body. [My cardiologist] was right. I can’t swim again. I feel broken. So many regrets about getting in that pool. I can’t breathe STILL. No more. No swimming. No running. Who am I kidding? Let’s be real. This body cannot do those things. Time to let go and scale down our ambition.

To…

Screw it, I’m swimming in the morning. Body, screw you, get over yourself. 

But realistically no, I should not be swimming. If I listen to my body, I should just take it easy and find a way to get my entire self used to any level of activity before I get in a pool (and even then my cardiologist was more or less all “do something where you aren’t going to drown if things go wrong”). The trouble is, any level of activity above walking (and sometimes even that) is too strenuous for me at the moment. So my theory is that I might feel completely awful, but in pushing my body it will learn to adapt with the new demand on it. There’s no other way to make it learn other than to force it to. So far this plan is not working. That plan belongs in the land of denial, and in reality it just doesn’t produce results (at least not positive ones).

The thing is, I could do it. Swim properly, I mean. I could do it. I have the technique and I try to move in a way that allows me to put that technique to use; but once my heart says no, I don’t have the energy to pull (which is all I can manage, because flutter kick is death), my muscles scream, and I feel like I’m drowning.

I laid there late into the night and I felt so unwell. I felt… limited. And I let it all sink in, I let reality breach the walls of my denial and seep through the cracks of my hopeful ignorance.

This body can’t. 

But I’ll break it trying… (this isn’t even a realistic thought, it’s a thought I seem to think in order to force optimism upon myself, and I hide behind stuff like that a little) Is it worth breaking it? (Sensible finally hit me).

Dilemma.

Over the next two days I swam again. 10 lengths and 15 lengths on the second day. 20 on the third. For the first time since my health properly hiccuped, I swam two lengths of a pool without stopping to catch my breath. And the next day I repeated the achievement and swam three lengths before the world started to fade to black even though my eyes were wide open. I couldn’t kick in any stroke other than breast stroke, and all my strokes were slow so I could focus on technique (as I don’t have speed or power). Despite the fact that when I swam front crawl I could only pull and was the only one in the pool not doing full stroke, I was faster than anyone else in the pool. And it was easier than it had been on that first night. I got out of the pool and my heart was racing (it continued to do so for hours). Initially, my lips where pale and blue, and my fingertips were drained of all colour. That fixed itself as my heart decided to slow a tiny bit and rectify this issue.

A few weeks ago I’d been able to swim 61 lengths before I felt how I did on that first night. And I think that’s what shocked me, what made it all hit home. A stubborn stupidity is what made me try again. Inevitably each time I feel lousy afterwards, but I’m starting to build some sort of agreement with my body. When it tells me to stop, I sort of do now (after I test it and push on a little more. But a little more is less than telling myself I can’t stop until I’ve done another ten lengths – which ended very badly and resulted in me almost losing consciousness in a swimming pool).

Life is about accepting new limitations. Or is it? Is it not instead about pushing them? Maybe not, maybe that makes you take ten steps back and either way your body starts to feel like a prison. Maybe life is about finding your limitations, acknowledging them, and working with them – about finding a balance between not letting them rule you, and ignoring them until they bring you to your knees to remind you they are there. 

I could spit out this optimism and tell you that I won’t back down, give it all the talk that I am stronger than whatever and will achieve the things I set out to. But that feels false. Because I say those things, but realistically there’s a very real chance that I will fall far short of the places where I aim to go. Those words bubble from denial, but they also stem from a determination that likes to rumble on in the background. My body told me no, and my brain finally backed down and listened to it… briefly. Because I know how hard this is going to be, but part of me is still convinced that it is worth it. And none of me knows how to let go. This is stupidity, stubbornness, an inability to let go, a hopeless dream of being something I will realistically never be.

But life is full of hopeless dreams, and this particular hopeless dream just happens to be my reason for getting out of bed in the morning.

So yeah… This is the other narrative of my mini-break with my mum. I gave up completely, and then I got up the next day and tried again. And it wasn’t so bad the next time, my body wasn’t so outraged (it wasn’t happy, but I could function). To be honest, I expected to be left very unwell again (and I’d felt unwell enough to decide that swimming wasn’t worth it, and if you know how much I love swimming, you’ll understand how awful I felt). But this little part of me was kind of defiant. It was curious. It wanted to try again, with no expectation of itself, and then anything felt like an achievement.

I guess the point is (oh hey I seem to have just thought up a point to this post) don’t give up. Three words that are so easy to write but so difficult to stand by. Perhaps a better way to say it is…

Do give up. Stop. Stand back. Detach. Pause. And think. And let it all go, give up, give in. It’s ok. When you feel like giving it all up and letting it all go, you probably need to. It’s your mind’s way of asking for a break, I guess. And give it that break. Let yourself breathe. The crushing weight of the feelings that drove you to want to quit is unbearable, and giving into it feels so right and so wrong all at the same time. Don’t give up on yourself, or on being on the planet, but briefly let yourself let go of the things that your REALISTIC thought processes tell you that you need to step away from. But wake up the next day, and even if you don’t want to, even if you think it’s pointless, try again. And see what happens. And if it’s crap, then fair enough. But if it is crap, my brain occasionally kind of whispers “one more chance, one more time” and then I (very, very stupidly) try again, a refusal to accept my incapability makes me repeat the process over and over, trying and failing in hope that one day I will try without failing. Is life about the results? Or is it about the journey? I don’t know. But I do know that perseverance is difficult. I also know that it pays.

No way but through. 

 

(On the subject of water, I’m kind of reminded of the weather (yes, how stereotypically British of me to talk about the weather). But the weather here right now is weird. Yesterday my mum and I drove home to 32.5 degrees of heat. Today as we drove to see the new Bridget Jones film, the sky was so thick with cloud that it was dark, it was only 14 degrees. It has rained non-stop all day causing flash floods all over the country – train stations have had platforms submerged under water, motorways are flooded, so many towns have lost streets and streets to feet of water, a landslide derailed a train and pushed it into the path of an oncoming train… I mean… British weather is a temperamental beast. Summer one day, almost winter the next! But I kind of love it. It’s been so humid – and strangely free of rain – that we’ve all been hoping for rain for days!)