Just Another Loop

I’m on an emotional rollercoaster at the moment, and yesterday was the sort of day which I can only describe as another loop on the track. I woke up knowing a date for my surgery (22nd June, exactly a month since my heart wrecked the awesomeness of a night at a Bastille gig by behaving in a way it NEVER HAD before) and also knowing that despite only finding out I needed it two weeks ago, the surgery ideally has to take place within the next week. By the time I went to sleep (or not, because it’s 2am the next day and here I am trying to sort my head out) I had experienced the pure BRILLIANCE of hearing the new single from Imagine Dragons and the long awaited new Lorde album, lost most of the day to a rather involuntary sleep (Skippy rendered me dizzy and unable to breathe. I couldn’t human, but only for six more days!), and then been hit by the pure DESPAIR of being told that, thanks to the recent massive computer hack, the hospital is still 350 surgeries behind so can get me a theatre team but… no theatre! Goodbye surgery date. Hello void I thought I’d crawled out of. This, right here, is why I usually never let myself hope – because it sets me up for a fall, and the landing hurts A LOT.

Basically, it was the kind of day where you look out of the window and wonder how the world is still turning at the end of it, because in your mind molten rock is raining from the sky and everything you thought you’d managed to build is falling apart around you. 

My cardiologist is really upset that we’ve been forced to go private to get the surgery in the time frame we need it to happen, but the already overrun NHS part of the same hospital where he usually does all of my treatment has a shortest wait of about 8 weeks because of the huge backlog with even emergency surgeries. I felt awful about my family having to gather a sum of money we don’t have. It felt morally wrong and it troubled me deeply. I’d been terrified of the procedure itself, knowing what it will do and how significant the impact will be (the scientific part of my brain is ALARMED at what is taking place). And then there were all the what ifs: what if it doesn’t work? What if something goes wrong? What if it kills me? I feel personal pressure for everything to go ok just so that money isn’t wasted. 

I’d been spiralling into this sinking feeling, and when I was given a surgery date it was like someone cut all the bad stuff away. Maybe the not knowing was the hardest part. I like a plan. Don’t like being left in suspense with things as important as my future. So I was happy. It felt like flying. And then after one phone call it felt an awful lot like falling, all over again. 

I just stopped. All of me stopped. Like in a film when someone is shot, and there’s this moment where they grunt and pause and just clutch at where the bullet went in – you don’t see any blood, they don’t fall right away, they are winded and they hunch over with this kind of startled pained look on their face, and their brain is all “WHAT. WAS THAT.” I’m still stuck in that moment. For a while I was so restless, feeling so many things but unsure what any of them really were because I was too overwhelmed. I wanted to go for a walk to clear my head, but since that Bastille gig I’ve been housebound. I wanted to get away. I tried playing music, but it just became a noise layered over the top of the chaos in my head.

The situation seemed too good to be true and it was (just like the crazy idea of having one normal night at a Bastille gig where I thought I could forget about my heart, and the surgery a month before that which was new and we thought would tame my heart). But it isn’t all bad, and at some point when I stop reeling from the sucker punch and stand back up again, that’ll sink in. I’m lucky. Always lucky. There are people far worse off and so my conscience tells me I’m a complete arse for reacting in the way I have and refuses to stop focussing on everything that it is seeing on the news at the moment. But being scared is a draining process. Waiting is draining. Hoping is draining. Losing hope and finding it is… Draining. Almost dying takes a huge emotional toll, even though it’s happened so many times (but the last time was only just over a week ago and I still haven’t wrapped my thoughts around being as ok as I am). I can’t handle the not knowing. It’s my life. My chance to have a life. And every time I think we’ve found a way to tame the beast it breaks its chains. It feels like a cycle (this also happened with my last heart surgery).

I think what got to me the most was that as I laid there today, my heart hurting just to remind me it was there, dizzy, struggling to breathe, exhausted, eventually unable to stand and then unable to stay awake as things started fading to black over and over… I felt so physically unwell that I didn’t know how my body could endure that for another hour, and the thought of six days between me and any potential relief from that exhaustion and incapability and (literal) heartache seemed like such a long period of time I almost cried… Six days felt too long. Six days felt too long. 

I don’t know why I’m posting this. Probably because the comments on my last post were very helpful, my family will be having their own reactions to this situation (and we don’t talk about our feelings anyway) and only three of my friends know (and are therefore on this rollercoaster with me and a little lost for words). Hopefully when my cardiologist is back at work on Monday we’ll have some better news. Although Monday marks the start of what should be “surgery week” so that’ll be a little tough. I’m lucky and I’m grateful and I’m fortunate. I’m also reeling and hurting and lost. So excuse how pathetic I’m being right now. At this exact moment, I don’t know how to be. I can’t sleep. I can’t think but I also can’t not think. My brain is full of feeling and devoid of all emotion at the same time somehow. 

Still, no way but through. 

I’ll order pizza for breakfast. I’ll cuddle my dog. I’ll listen to Bastille. I’ll watch some Julian Solomita &/or Jenna Marbles YouTube things. And I’ll wait for my world to start turning again. 

So Much More

Maybe it meant more because I hadn’t seen him for over a year.

Maybe it meant more because he doesn’t show affection or emotion.

Maybe it meant more because he’s my flesh and blood.

Maybe it meant more because his fractured shoulder blade is still healing so it’s painful for him to move his arm.

Maybe it meant more because it was the first thing he did when he saw me.

Maybe it meant more because I nearly didn’t get to fit awkwardly into his arms, because I had to fight so hard all day to make it to that moment and I was barely conscious, and maybe it’s because I’m genuinely scared that I might not get a moment like that with him again.

My uncle arrived at our house just before midnight last night with his heavily pregnant wife. He’s this strong, steely figure who never shows any emotion. If he’s smiling in a photo it’s a big deal and it’s usually only when he’s with his kids (sometimes his wife – he’s mellowing). His family wasn’t ever particularly affectionate, but beneath the steel he has a pretty big heart. I stayed up waiting. I kind of always wanted to be close to him, and there’s a picture of him holding me as a baby where he’s almost smiling. It’s framed on my bedside table and I cried for half an hour when I found it a couple of years ago because I never had a dad when I was growing up, and I thought I was never held in a pair of big strong hairy arms (also, he’s almost smiling, so I kinda think he may love me a bit, which made me feel all the feels). When he saw me, he said hello and, shivering, shuffled towards me, his arms outstretched for a hug that took me by surprise. It wasn’t a brief hug, it lasted a few seconds, and I was sort of too stunned to appreciate it. It meant so much for so many reasons. It was so comforting for so many reasons. For so long all I’ve wanted was to be held. Right there in his arms I felt part of our family. I wanted to cry because I spent all day feeling like death and suddenly it was all worth it.

Now that my uncle is here, I definitely won’t go to hospital. The PTSD is no longer the only thing holding me back (and it was strong enough on its own), but there’s a guilt and a fear. I don’t want my family to be angry with me. Anger seems to be an emotion that gets thrown at me a lot when I’m unwell. I get shouted at, and I understand the frustration, I understand that I’m destroying my family and I don’t want to do that any more. My uncle turned 50 last month, and he’s over for 4 days so we can have a party for him with family and the people he grew up with, not too far away from the place he was born I guess. All our family and family friends are coming together – unofficial aunts and uncles, and I love that. I love being all together. This is his time. His wife is heavily pregnant and it’s her time too. This is about them. I don’t want to ruin that. I don’t want them to worry. I don’t want to upset anyone or throw any spanners into the works. Also… I want to be there. I want to be with them, to enjoy their company. Because he’s this person who I think might love me, who gives hints that he cares more than just because he’s obligated to (since we share DNA). As I’ve got older, we’ve had conversations. Sometimes we’ve messaged, half a world apart, while he was wide awake in pain after surgery and I was laying in an ICU. And he hugged me in a way that acknowledged how awesome it is that I’m alive. It meant more because he so nearly didn’t get to hug me so many times – so many events have almost taken that moment from the pair of us.

I spent a while unconscious on the floor after I last posted. My dog curled up with me and I woke up with him laying against me. I ended up kind of delirious at one stage, slurring and unable to make much sense. After a few awful hours, I think the acidosis plateaued, or at least my body got used to it a little. My mum asked me to do chores and stuff, with no idea how little energy I had. I tried. I fell in a heap on my bed. I slept.

Then, swaying in my chair, my vision drifting in and out of focus, and sometimes losing the ability to hold the pen, I made notes for the test I have on Friday. Seven large flash cards. 13 sides. It took me hours (and not only because my study attempts initially deteriorated to me having a meltdown and ordering a pizza I couldn’t really stomach, and then in the evening I found myself somehow listening to a 10 hour loop of Gandalf nodding along to a jazz rhythm for 22 minutes). My heart kept feeling BIZARRE, palpitations like it’s felt when I’ve had a junctional rhythm or atrial fibrillation. It gradually started happening more and more often, for longer and longer. My lower legs ballooned to the point that my usually baggy skinny jeans were cutting into my ankles, and the seams were suddenly forced tightly against my shins, leaving deep red marks. I was very spaced out, and messaging my friend, we discovered that I was easily confused and couldn’t grasp simple stuff. She kept going on and on at me to go to the hospital. Eventually I couldn’t see the screen to message back. I don’t even know what bit of me is rebelling any more.

But on Monday I have a test and another assessed thing. On Wednesday I have a tutorial. I can’t miss these things. I need to stay out of hospital until at least Wednesday afternoon – I don’t have time to be unwell, not now. And yet I know that lasting until Wednesday is near impossible. I know that lasting to my uncle’s party on Saturday will be a real challenge. I should have gone to hospital today. I nearly did. I fear I’ll end up there tomorrow. If somebody had found me collapsed, I’d have been taken off in an ambulance. The thing is, I’m still unwell enough to call one right now. But I don’t want to miss uni, especially not assessed stuff. I’ll run myself into the ground to try and be there, I don’t want to have the talks that I had this time last year. I don’t want to give in. I will be there if it kills me (and so, so many times it nearly has). And yet… I don’t know how I’m going to make it to tomorrow without collapsing and ending up in A&E. I don’t say the full picture here, not the full reality. But this is bad. This. Is. Bad. I shouldn’t be here. I’ve no idea how I made it through yesterday and honestly I don’t know how I’ll get through today (I know as I write this today is only 32 minutes old but hey). I should be unconscious. My body can’t do this – my organs won’t do this.

But feeling and being so unwell made seeing my uncle mean so much more. It makes everything mean so much more, actually.

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.

No Excuses… Even Now

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No way but through.

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.

I Thought It Was Normal

And then I realised that I have no idea what normal is…

I sat in our first lecture of the day yesterday and the tiredness hit me. My eyes were open but the world would fade to black, I’d feel BEYOND dizzy and lightheaded, and then after briefly and completely zoning out, I’d snap back into the world with no idea what had happened for the past few seconds. My vision kept becoming unfocussed and I couldn’t control the muscles responsible for holding me in a sitting position (hello desk, nice to meet you, sincerely, my forehead!) Normal tiredness – right? I just assumed so.

Between lectures, my friends and I went to sit in the “restaurant”/canteen hybrid thing that sits at the entrance to the student village on campus. I was sat perching on the edge of a seat with a friend who has watched me almost die far too many times, when I coughed. Big deal, I coughed. But it was a big deal. Because I coughed up a lot of watery stuff. I assumed I had just had a chest infection, and then I coughed again. And again. And each time there was the water. It had progressed way too fast to be a chest infection – I hadn’t been coughing at all until that moment. I developed a pretty instant wheeze, and then I felt my heart rate. Skippy had mistaken himself for a freight train, but he wasn’t a super modern one made of steel, he was one made of paper and glass – my blood pressure was so low that I could barely feel a pulse. I told my friends that I’d been so tired I’d been blacking out, and for some reason I asked if that was normal even though I knew it was. “Er… No! [Me] that is not normal! I think you should go to the hospital.”  Oh… Not normal? Really? I was genuinely so calmly sure that it was perfectly typical to do that when you’re tired.

The only time I’ve ever experienced a similar coughing/wheezing situation to that that is when there was fluid on my lungs. Upon realising this, I freaked a little, because feeling like I can’t breathe is the one thing that gets to me. To me and my mind it is the scariest element of advanced acidosis, sepsis… Anything.

I’m trying so desperately to be more open about my health at the moment, but I worry about bothering or boring or worrying people. Multiple times a day people offer to take me to the hospital because I’m that unwell. To healthy people, that seems to be a knee-jerk reaction – to call one of my doctors or walk into an A&E department. I mean… That’s the normal, rational thing to do right? But they act like it’s this quick fix. They act like there’s no trauma behind it, and they don’t understand that my doctors can do nothing from the end of the phone other than worry with them, and that doctors in A&E will probably stick in a central line. A normal response to the situation for me was not a normal reaction at all. It was blasé, it was I’ve had worse but this still scares me, it was no need to bother anyone because it isn’t an emergency (forgetting that dealing with it at that stage would prevent an emergency ever needing to occur).

This time I knew I had a problem. Usually when I consider going to hospital, it is because my desperation overrides the fear that stops me going, but this time it was a fear that overrode the fear. I went to my next lecture though. I struggled to breathe through the entire thing. People kept telling me to go to hospital, and in the end my assurances that I was fine became convincing enough to assure even myself that it was all ok. I will not miss lectures for anything other than a brush with the grim reaper. I just don’t. Last year I’d walk a kilometre or so (maybe 2) to get to our lectures on the medical school campus, and the walk was far too much for my body, which meant I’d be so rough by the time I got there that I’d say I was tired so that when I passed out onto my laptop my friends just thought that I was sleeping (and this happened every lecture without fail). I was scared the uni would kick me out otherwise. I was too ashamed to do anything else. I went to every one of those lectures (when I was out of hospital), and at the same time I missed every one.

I didn’t go to lectures today.

I got a stomach bug, which by itself is not enough to stop me going to lectures. Try managing type 1 diabetes with a stomach bug though, throw in an already outraged body, and then try to figure out whether or not you’re in acidosis or it’s just the stomach bug doing its thing… And that still isn’t a reason for me not to go to lectures. What stopped me was that I was so dizzy that I stumbled to the bathroom zig-zagging and grabbing the walls just to stay up, and could barely walk. And then I realised that with the amount of visits I had to make to the bathroom (so many that eventually I just curled up there and went to sleep because I didn’t have the energy to move) I wouldn’t last through the lecture that I physically couldn’t get to anyway. I slept from 7pm yesterday round to the same sort of time this morning, yet I physically could not stay awake. Again came the vision fading to black, and I’d wake up in places that weren’t my bed, stiff and sore and cold. I blacked out a lot. So many times. All day long.

And then I saw myself, and that was when I realised quite how much trouble I was in. My blood confirmed this. I could and should have been in a hospital. I picked up my phone to call an ambulance, and then the panic and the flashbacks set in and I bailed, accepting that I’d just go right where I was and be found in a few days when someone eventually noticed I wasn’t at lectures. I was dehydrated because of the stomach bug, on top of being seriously dehydrated from my blood sugar levels, and my mouth was so dry that I at one point genuinely came to choking on my own tongue, unable to unstick it from the back of my throat. I couldn’t drink. Even if I could, no amount of water would take away the dryness – it’s the nature of a diabetes-induced thirst. It got to the point that if I tried to move I’d just black out. My heart thought I was running a marathon, and I was in serious pain because my GI tract seemed to contain the fire of a thousand exploding suns… Orbited by knives…

I didn’t even know how to get to the door of my room to let anyone in. I was stuck. So I spent most of my day in the bathroom, coming to from a black out I had no control over to find a couple of hours had passed since I last saw the world. I couldn’t move. And all I could think was I have to meet my personal tutor tomorrow, and then my disability advisor… And I have to do the coursework that is due in on Thursday which I haven’t been able to complete because our group messed up the ECG tracings… So eventually, I emailed that module’s lecturer from my bathroom floor, unable to focus on the phone screen but hoping that I knew the position of the letters well enough for autocorrect to have helped me out. It has been a very, very long and very scary day. My body can barely human even now, and by “human” I mean remain conscious. It just keeps switching itself off. I’m so cold my feet are blue, and so dehydrated that I am cramping EVERYWHERE.

At some point during the late afternoon, I decided to take a risk between black outs etc. and try to get to the shop next to our accommodation building because I’d finally figured out how to stand. I wore the university jumper that I usually sleep in, and a pair of soft jogging trousers – both items I never normally leave my room in. I was too unwell to care. I just needed something with electrolytes in it (sports drinks to the rescue!) and some comfort food in hope that I might eventually be able to persuade myself to eat something other than a dry cracker. I must have been high as a kite, because the things I bought make absolutely no sense to me now. Things in my room are in places I don’t remember putting them, and there are text conversations I genuinely don’t remember having. I briefly felt better, and then got much, much worse. As the world faded out again I stuck a needle in myself a few times and hope I’d done enough to stop the advances of the mutiny led by my very own blood.

There was no need to make a big deal. There was no need to start posting on group chats about how I felt like I was dying like people do when they have a cold. And I will walk back into lectures whenever they next happen without anybody having any idea what I’ve been through today (even here I’ve left out the panic-inducing details, because I don’t need to worry anyone and I seem to be through the worst now). But it made me realise how years of chronic and often serious health issues has distorted my view of what is normal, and what is acceptable, and when I should go to a hospital. I thought I knew what normal was… And I don’t think I’ll ever be able to comprehend it, being healthy, I mean. Just like most healthy people will never be able to comprehend what it is like to be me (although in my mind, I’m no different to them, I’m healthy too, and the way I am is normal). I give off this illusion of normality. I did it all day long – maintained normal conversation when realistically, if I hadn’t saved my own ass, I’d have been dead within a matter of hours. That’s just normal to me, to come so close to the end and deal with it myself (in very unorthodox and desperate ways), to not feel like that is worth bothering a paramedic with (not that I’d ever ever do that – NOPE).

People will think I missed today’s lectures for normal reasons – that I couldn’t be bothered, that I overslept, that I was ill in the same way that they become ill (I had a headache or a sore throat or a cold). When I use the word unwell, things have to have had the power to kill me, or I have to have felt pretty near to the grim reaper. I don’t use the word lightly, yet when I say it, people will take it lightly, because that’s just normal. My definition of the word unwell, is not. I have no sympathy for myself at all, and hate when others direct any at me; yet when my friends get a cough or whatever I worry like an old woman about them. When I tell them I was unwell (if I ever tell them), that’s what they’ll think was up (apart from those who know me well enough to panic like nobody’s business when I say I feel unwell). They’ll have no clue that it means I spent most of my day unconscious and confused as to how I could inject so much medicine and my blood would still scream at me for more. They won’t realise that I don’t remember the conversations we had about coursework or whatever. They won’t realise that at points I genuinely feared for my life… And for me that’s just such a normal meaning of the world unwell – the only circumstance under which I would ever use it. So is my mind’s definition of the word “fine” (what I call fine should have me in hospital, and would have any sensible person in a COMPLETE panic). To me, fine means that I’m not going to come close to/actually meet the grim reaper within the next few hours (sometimes more), or that I’m pretty seriously unwell and on the verge of an emergency, but not quite in a disaster situation yet. But it isn’t normal. It’s this thing that I call normal.

And in reality, I have absolutely no idea what normal health is, or how it feels, or how it makes you look at the world. I find that kinda interesting, that nature can raise a human who without modern medicine and science, could not function as a human at all… And make it grow up feeling normal. It made me think a little.

I honestly have no idea how I made it through today. Hats off to my body, it is a very stupid yet very, very impressive little thing. I thought it might give out on me this time. I really did.

This isn’t the post I wanted to write (unfortunately for you guys that one will probably follow in a couple of hours) but it just felt more appropriate at this particular moment, as I lay here unable to do anything other than lay 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.

Escaping Reality (London At Night)

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

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

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

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

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

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

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

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

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

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

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

No way but through.

 

Unaccustomed

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

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

25/09

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

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

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

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

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

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

It asked stuff along the lines of

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

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

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

26/09

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

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

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

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

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

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

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

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

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

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

Never underestimate the power of an education.

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

The Overflow

“Even the little things were now a challenge, one I didn’t understand” – Sarah Todd Hammer

There comes a point in the great tunnels of denial that we burrow ourselves into, when the roof caves in and bright, harsh daylight streams in to illuminate all the things we wouldn’t let ourselves see. I am not an idiot. I know my body is nowhere near what it used to be. But it is better than it was a month ago, I can now walk. I feel so much better, so strong, and yet… I am not what I thought I was. As I walked my dog for the second time of the day with my fellow third wheel last night and he encouraged me to stop and slow and say if I needed a break, I realised it was ok to admit my incapabilities to the pair of us… And I realised just how much I was wrecking my body in forcing it to walk so far (not far at all, just round the block, but way too far for me) again. As I pushed through dizziness and an inability to breathe because we had encountered a slight incline, I wondered when things had actually become like this. And I wondered why. Not why me or anything like that, I am perfectly accepting of the fact that this is the way things are and incredibly grateful to have been spared much worse, but I wondered why my body struggled so much. Why is it such a poop? Not a sort of why that you answer with a cause, a why that you answer with an explanation of what exactly has gone on in my body to leave me in such a feeble state (I already know but hey, denial and tiredness!) My inner scientist broke out and my inner frustration broke out and I wondered why it couldn’t do such a simple thing. It just didn’t make sense to me. At all. Suddenly I was confused by… Myself.

My fellow third wheel and I walked and talked and made plans for him to come and move in for a week when my family are on holiday and I’m home alone with my furry rock. We went back to my house and planned to watch TV in the kitchen, but my little brother and nephew kicked us out, so we sat on a step in my back garden with the dog, and we talked for well over an hour until it was dark out. We talked about service dogs. We talked about how I deteriorate so quickly now with no warning and no symptoms until way too late, and that it would be incredibly helpful to have an early warning system, which would mean far less hospital admissions and ICU stays (which is great because of the whole PTSD and hospitals thing). And then because we could, we looked at puppies and completely freaked at the cuteness of them and laughed a lot and shouted about the fluffiness so many times I was surprised none of my neighbours came round to complain. And I fell in love with a labrador-husky cross, and my fellow third wheel encouraged me to just ignore my parents and listen to the doctor that suggested the whole idea and just get a puppy and start training it.

He wanted to stay as late as was possible, but ended up getting picked up around half eleven after we watched a film. I say we watched a film, but in actual fact we just had Skyfall as background noise to our continued conversation about service dogs – the issues and the hiccups and the problems and stuff that were stopping me getting a puppy and training it either through the charity or privately, and potential solutions to those issues. My fellow third wheel invited me to stay over at his at some point so we could talk it all out some more, and has said I’m welcome to just appear at his house any time (obviously when he’s home and not busy). We spent four hours together and I was glad of his company because he stopped me overthinking the whole excuse me body but what even is this shocking incapability and now that I think of it when did I actually stop being that person that used to run along these pavements every day? thing that was suddenly a huge bother to me.

I just couldn’t work out when. I couldn’t work out how. That’s it. That’s the word, not why but how. How did this happen? How did I end up here? And when? When did this become normal? Did I just feebly roll over and accept it? Why did I accept it? Should I accept it? I don’t even know.

My fellow third wheel left after a long hug goodbye, and I sat down to type out my service dog benefits and draw-backs in a letter to try and shut my parents up basically (I don’t even live with them, but they made it clear that if I get a thing that will save my life then I’m not welcome in this house and I have to find a way to afford all of my London rent by myself – even though my uni fund currently pays it, they seem to have control of my uni fund and therefore may as well have a gun to my head). That started to happen. And then from absolutely nowhere I decided I wasn’t accepting it anymore. But “it” wasn’t their objection to a service dog, “it” was everything: being treated like a child, being made to feel like a substandard human being, being made to feel guilty by selfish attitudes, being judged and shouted at by my own parents for having PTSD, being put down and moaned at constantly, being scared, not feeling like I am respected, feeling like I’ve lost my independence and am more 20 months old than 20 years, shielding my mother from all the things that get to me to spare her feelings when she doesn’t even consider mine when she decides to rant about my health and make me cry…

5,000 words poured out of me. 5,000 words. I cried a couple of tears with almost every paragraph. The things I was writing about hurt. They were things I’m not allowed to talk about, opinions I did not feel allowed to voice, truths about this family that nobody will face and the impact that toxic familial relationships had on me. I put it all out there, how I felt, the impact of everything on me, because she never pauses to consider how I may feel, only rams her point of view into my mind and forces my own to fall out like overflow. I got angry at how selfish that is. I felt sorry that she was so broken because of me. I let it all out. Stuff I’d kept in for years (and the family feud that is apparently about me, which is petty and abominably selfish and insensitive and made me want to cuddle up with the grim reaper instantly but thankfully briefly until anger took place of that feeling). And I don’t know if I’m going to let her read it. I want to, but she hates to read the truth.

She hates to read what the people she picked for me to call dad (two of them – the one who made me abandoned me when I was born) did to me, the emotional scars they left. She refuses to accept a lot of the way I feel and refuses to listen to me because she lives in her own bubble of denial. She does a lot of the things she dislikes when her own mother does them. She doesn’t understand me and she just shouts whenever I try to talk to her. But I can’t do this any more. I can’t be in this house. I can’t do it. I feel so small and downtrodden and like an unwanted burden at the moment. I can’t do anything right – someone is moaning at me all day every day. Tiny things, they moan if I don’t load the dishwasher (which my little brother, who actually lives here still and is 13, never does) and then I get shouted at because I put the plates in wrong. Things like that, things that make me feel like if I can’t even do that right I must be a substandard human being because I screw up everywhere.

I am tired of my dad not understanding science at all and being convinced I am responsible for my own health issues (HELLO. NOT THE CASE). I am tired of being told off for sleeping when I’m unwell and can’t help it, and being shouted at for not doing chores because I’ve been home all day while my family “are all tired too but we’ve been at work and school all day and you’ve done what?! Nothing!” I know my body sucks. But on the days when no glucose at all is getting into my cells and my body has nothing to burn for energy, my body just shuts down. When my heart can’t heart any more, my body crawls off to sleep. When my blood is becoming acidic, I do nothing but sleep… (See the pattern here, it isn’t even a normal sleep, I don’t wake feeling rested. And tiredness isn’t the word, it is pure exhaustion, I can’t even keep my eyes open or lift my head or stand, let alone walk).

I realised they don’t ever hold back before just letting everything out at me, before taking their frustrations with work or each other (or mostly my health) out on me, and that maybe I shouldn’t shield them from my feelings for a change. I just want them to see. I don’t trust. I don’t feel close to my family and haven’t for a long time for reasons I will not discuss, but I want to feel close, and it makes me hate myself that I can’t let that happen. I let it all out anyway. And I’m terrified to let her read it (my mum) but I think she needs to. I don’t want to hurt her, but she needs to know why I am hurting, she needs to know the effect her actions have on me when she snaps and says stuff she doesn’t mean like “You’re ruining my life” or “You are pure evil!” She needs to understand that even if she doesn’t mean them (and denies ever saying them, which is why I occasionally record her rants so I can listen back and check I’m not insane) the things she says hurt me. Just because a few hours later she doesn’t feel the same way, doesn’t mean that I’m not allowed to have an emotional reaction to the words she threw at me, doesn’t make everything ok, and doesn’t undo the damage that by that point those words have already done. I know she doesn’t mean them and I’m still stupid enough to let them get under my skin. It’s just what she does. I care about her and I am worried about hurting her feelings, and a little afraid of her reaction.

I am so distant. I have been distant from a lot of people for a long time. It is lonely and isolating and I hate it but at the same time it feels so much safer and I can’t help it, it is a defence mechanism. It’s what happens when you’ve been through the stuff I’ve been through. I don’t expect love and I don’t look for it anymore. I don’t feel loved and I haven’t for a long time, by anything other than my dog. I don’t trust. At all (unless something has four legs, huge canine teeth and a tail). I hate living this way. It is isolating and horrible and it only leaves more room for depression to spread its wings but I can’t help it. My mind is an animal and it learned. It learned things it cannot unlearn. It learned that humans will hurt you. All of them. The will beat you, they will make you bleed, they will belittle you, they will shout, they will make you feel like less than dirt, they will put you down, they will let you down, they will bruise you, they will scar you, they will bully you, they will manipulate you… And they will always get away with it. And long, long after they stop inflicting the pain, you will pour the poison that fuelled it into your own thoughts without any input from them.

I guess I’m trying to bridge the gap between me and my mother. I feel she should understand me in ways she currently seems incapable of because she can’t see past her own frustration and judgement and… She needs to understand the way I am and why. My family need to know what they do to me, but for the sake of us all I couldn’t mention the specific things that have been done. The past is the past and onwards we move. Examples wouldn’t be believed anyway, like I said, she lives in denial, and who am I to take her from it’s peaceful, sandy shores?

I didn’t know how to show her, how to make her see. And I didn’t know how to keep her heart whole but I know I break it every day. I explained that in the letter. I explained that my family sometimes make me feel like they’d be better off if I was dead, but that I know they’d hate me for running off with the grim reaper and death, and that if I stay of if I run from existing, either way all I can ever do is hurt them. It’s how I feel. This is all just how I feel. My family are nice people. I’m just a bit of a dick, as you know.

Anyway, tonight it became apparent to me that I could never walk 1,000 miles (I would literally fall down, but not at somebody’s door like in the song by The Proclaimers, instead after about 2km), but I could write 5,000 words. And I did that. Because it was an equally big step and an equally long and difficult journey for me.

I said I let it all out; however, the scary thing is, I was just emptying the overflow. There is so much more I can never let out. Bigger stuff. Stuff that matters. Stuff that broke me. Stuff only the people involved know. It would do too much damage, cause too many problems, break too many hearts. So I will let it tear me apart and I will bury it and hope the past fades to nothing. There are also so many feelings around the severity of my health recently that my healthy family would never understand. The crushing weight of everybody’s expectation, my worries that university is going to be as unsupportive as they were last year (although for once everything is so bad all at once that university doesn’t matter right now). I miss being at uni. I miss London and independence and adult conversation and intellectual stimulation and I want to go home. But I know I will isolate myself in this frame of mind and that makes everything worse, and I’m in a room alone not sharing a flat and nobody will even notice if I collapse there and I could just die and nobody would know for days (this one is a stupid teeny tiny illogical worry but hey let’s throw it in while I’m emptying the overflow tank of thoughts).

I am filled with dread and I don’t know what about. There isn’t one aspect of the future responsible. It’s all of it. All of it.

“Physically, mentally, emotionally – it seems like every part of me is broken in one way or another” – Patrick Carmann, Skeleton Creek

No way but through. 

Forgive how pathetic this post was, this is just my only place to vent. Oh wow it’s now August. And also suddenly 4am. No point sleeping now, I guess. Can’t bring myself to re-read this. Sorry it is so long and sorry for the mistakes it is probably filled with.