It Shouldn’t Be Impossible… So Why Is It?

I’m not entirely sure how to start this post or how to stop it being a mess of word vomit on your screen, so I will apologise in advance and then… begin.

I fell asleep to the sound of Bastille last night, which means that it’s also what I woke to after a pretty terrifying (and hospital-themed) nightmare. This was a good sound to wake up to, because it instantly pulled me to somewhere safer. I hoped that after some sleep, my mind may be better equipped to fight the fires razing it to the ground; but hope, as I have been taught by experience, is often far above reality. 

The alarming downward spiral my brain hopped on last night was met with an incredible level of kindness and understanding by the staff. Nobody has ever seen me like that – even myself. The fact that it was a thing at all was in itself highly distressing to me. But among all the feels, I found words to describe how overwhelmed I was, and after being told that it was ok and understandable and brave and other such illogical responses, those words eventually filtered through to the next shift of nurses (as did news of my tears). It also reached the doctors. The consultant on the ward this week is also the clinical director. Upon learning of my overwhelmed state and realising (as everyone else already had) that a whole group of doctors walking into my room was going to be way, way too much for me, he wandered in by himself and explained that he thought that would be better. When I was in hospital before, after several doctors did awful and sometimes negligent things which traumatised me and on occasion left me in ICU intubated or almost dead (both physically and eventually emotionally), my paediatrician used to make ward round skip me and walk in alone so I wouldn’t be overwhelmed. My brain isn’t sure how it feels about this parallel. 

He stood at the end of the bed and spoke softly, kindly. Like a human. My brain pedalled desperately in an attempt to seize its opportunity and find its voice, but the chain kept slipping. He confirmed what I was told yesterday – the minor surgery today has to happen. He said I may be here a long while. I tried to process that but still the chain kept slipping. I couldn’t words. I tried not to cry just at his presence and at the same time found a huge amount of comfort in it because it meant a plan and an explanation and… reassurance. 

He asked me if it was ok to go ahead with it, and I said yes. I said yes in a voice that wasn’t mine – it was quiet and montonous and strained and I was dead inside. He asked if today was ok, because it needs to happen as soon as possible. Again, defeated and unable to fight myself, I made what I knew was the right call. I said yes. Because logic is still there. Logic knows that I need this procedure and I need these drugs. It isn’t that I’m not thinking positively or logically. It’s not that any of this is a conscious choice because I’d choose the procedure – I did. 

Consciously I force my thoughts to be positive and logical and do what I know has to happen, but subconsciously this huge tidal wave gathers and swells and sweeps all that away. Consciously thinking things to override feelings all the time is not only ineffective but exhausting. I didn’t have the energy to explain how I felt. The pedals were still slipping and I couldn’t find words and I didn’t have the energy to reawaken my emotions. So I said yes, just like I did with the blood test yesterday (and even though I freaked, logic made me hold my arm steady and let the doctor feel for veins as subconsciously I collapsed – thankfully the latter was obvious and noted via the involuntary expression on my face and change to my body language and voice, and she decided it was too much for me to deal with then). 

He left the room and the chain stopped slipping. My brain pedalled so fast that it swiftly arrived back where it had been the night before, and tears occurred. This was not a good time to need IVs. My nurse walked in, concerned because he had been told about the emotional effects of everything. He told me he couldn’t even imagine what this situation is like, but that tears were very much an understandable part of it and that it made complete sense to him. And then he went to draw up the IV that makes me feel like death. I mean honestly, it makes me feel so unwell I can’t get out of bed, it leaves me unable to look at light and with awful eye and head pain, and my body generally just rebels against it. Physically my current situation isn’t hard, it isn’t unmanageable – I can cope with the pain and all the rest of it. But I cannot cope with the mental impact of all of that, especially not when the awfulness is added to by EVIL IN IV FORM. 

He offered me IV pain medication. Logic told me that was a smart idea because my chest hurts A LOT. But physical pain is something I’m used to, something I can handle, something I can live with (if only the emotions it induces were easier to handle). I wasn’t bothered by the pain. I was dead inside. And I still just couldn’t. That was the first thing I refused. Then two more IVs. Then EVIL IN IV FORM, which I actually need to bully my body into better health. I tried so hard to say yes, I’d sometimes even say it and then something else snaked around my logic and choked the life out of it and I’d just collapse under its weight and sit there torn – silently trying not to let go of the right thing and desperate to be able to go through with it but being pulled back by something raw and animal that I cannot control. 

I honestly don’t think I can do this. I don’t think I can go through with it. 

Writing this has been interrupted by a visit from a diabetes specialist nurse who I can only describe as a LEGEND. He’s awesome and pops in for a catch up when he’s doing the ward rounds because type 1 diabetics are very rare in this hospital (there are currently 1 or 2 of us among a list of patients almost as long as his arm, and the record is 3 type 1s at once). And then the speech and language therapist walked in to discuss the inflammation in my throat and how I’m going to get nutrition when I am unable to swallow any consistency of food or drink due to the after-effects of being intubated (which is why they are reluctant to intubate me for the procedure today). Talk turned to NG tubes and again I know that’s a smart and sensible idea so logic tried to engage, but the pedals in my mind slipped again and it hurt and I was like “I’m so sorry I can’t do this today. I can’t do anything today”. I refused another thing. 

The nurse keeps coming in to give me EVIL IN IV FORM and I literally just cannot even let him prepare it. And I don’t know how to go through with this procedure. It could mean bad news if it goes ahead and I can’t deal with that. I don’t know what’s wrong with me as a human to make me behave this way. I don’t like that I can’t control it and that it speaks over the logic and appreciation that I am consciously and deliberately aware of. Have you ever made the right call and not been able to take it?

They’re pushing me and pushing me to have EVIL IN IV FORM because I need it and it can cause all sorts of problems if I don’t, and they are giving me logical arguments and going on and on like I’m clueless. It’s too much. My brain is making that argument too all by itself, but something else just shouts it down. They don’t appreciate that, they go on an on and I’m so terrified of medical staff because of my PTSD that it feels like bullying even though it’s concern and kindness. They see this situation without any of the emotion, without living through the things I have somehow lived through, and they cannot possibly understand that it isn’t as simple as the black and white scenario they present and push and push. I feel trapped and pressured and even more overwhelmed and so now I’m just sat crying as I write this, wondering what on earth possessed me to post this and feeling the need to apologise for doing so. I feel so helpless. 

I don’t know how to do it. Any of it.

I’m so broken I don’t even want to run away any more. There’s none of me left. They’ve taken it all. I’m gone.

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One Thing Too Many

Something is very wrong and I don’t know how to make it right. I don’t know how to BE right, is more accurate. My brain seems to be done. Completely overwhelmed. I’ve no idea why. Maybe it’s because I was so happy with my 3am discovery (see previous post) that I gave up on sleep. Maybe it’s because the new drug I am on is PURE EVIL IN IV FORM and has made me feel like death BUT ISN’T DOING WHAT WE NEED IT TO. Maybe it’s because a doctor walked in this morning and told me that tomorrow (instead of today as I had been told) one of his colleagues is going to slice me open as casually as if we were discussing the fact that this hospital room has no windows, and nobody has appeared to explain what is going to happen in any way shape or form (I have to have a plan. It’s my body, my life, and right now I feel like I’m the only one left in the dark. Not being in control at all scares me). Maybe it’s because I was already completely overwhelmed. Maybe it’s because I got worse overnight. 

(Note: the standard of this post is shockingly awful. I am trying to put words to things that don’t even make sense to me and that make me so ashamed of myself as a human that I have no intention of reading through it after it has been written. I’m irritatingly weak and pathetically beaten, and you’ll have to excuse that. But I want to be real. As a society we often romanticise illness with fictional stories that tug at heart strings, but it also has an ugly side which unfortunately I am about to mention a lot)

My brain is no longer thinking, it’s reacting. I’ve hit this wall, this huge great mental barrier, and rather than climbing it or scaling it I’ve curled up in a crying little heap at the bottom. I’m too exhausted to fight with my own mind any more, and so today it called the shots. I seem to be refusing all IV things that I am not currently hooked up to (there are three on this drip stand, and four other things prescribed which I just cannot handle being given). I’m not doing it to be awkward, and not even because I think it’s something I should do, it just happens because for some reason when someone walks in the room with the next IV I now completely freak out and tears well and I just cannot. It’s one thing too many. I’m so overwhelmed that every single new thing is just too much today. My brain reacts to being so overwhelmed by… curling up in a ball and deciding it’d rather just feel like death. Or face death. No more waiting. It’s cruel to drag it all out. I don’t know how to do this any more. 

A (lovely) dietician came to see me this afternoon because being intubated has messed my throat up to the point that I still can’t swallow anything without choking. She wanted to put me on a puréed diet and told me I needed to stop and appreciate that I’ve been doing all the right things and my throat is at fault, not me. My friend sat there while we had this chat and I just watched reality cloud this happy mental place I’d been lost in. I’d been in this little bubble – I had a video from the stranger who happens to have a brain capable of making music that saved my mind (apparently the video was his idea), I had the company of my friend from the Bastille gig all the way from Manchester… so the awfulness had been so far away. And then just like that it had me. With a new pacemaker and a puréed diet I suddenly felt like an 80 year old. I remembered where I was. I stopped feeling like a normal 21 year old human. I remembered how I felt emotionally. I remembered the entire situation and it hit me like a train. So did the fear, and what I can only describe as a desperate helplessness (nothing we do is working, we’ve thrown some nasty drugs at the situation and it’s still deteriorating). My voice cracked, the tears welled. My nurse just said “Bastille! Play the video!” So I played the dietician both videos I have and I don’t think she was interested (although she had heard of Bastille) but it helped because I couldn’t cry for a few minutes after that. I was furious at myself for being such a pathetic idiot. When she left, the tears fell. 

Soon afterwards, a doctor walked into the room to take bloods (to check the nasty new medication wasn’t causing kidney failure or messing up my liver or making my muscles break down and poison my blood – as it is known to do as some of its “less common” side effects). I looked up, and off my brain ran. Tears immediately gathered again, my voice broke. I didn’t have the energy to say no, or the confidence. I rolled up my sleeve, both of us knowing that getting blood from me is a near impossible challenge that usually requires an ultrasound machine and an anaesthetist… She put her tray of equipment down on the bed… I saw all the blood bottles and needles ready to go (she’d brought a few because she knew she’d have to have many attempts – the vein my PICC line is in is so small they can’t take blood) … and I was just completely overwhelmed. My mind crumbled. I just stared at my arm and sank inside. The doctor said she didn’t have to do it then, and asked if I wanted to wait. In reply this tiny voice that sounded kind of like mine said,

“Can you come back later please? I’m really sorry, I just can’t. I don’t know why. I’m so sorry.” She was totally calm and very understanding about it. I’m so hard to bleed that my “daily” bloods are taken like… once a week. So it doesn’t even happen often. I’d thought I could do it. I had tried to swallow how overwhelmed I am right now and offered her my arm but I just couldn’t. After that I was embarassed. I was ashamed. I felt pathetic and ungrateful. I apologised profusely, and then withdrew to somewhere in my brain that made my eyes brim with tears as I lay on the bed (by that point I was too unwell to leave it). 

I have no idea why, but every single thing is just too much right now. Every time a member of staff even walks into the room I find myself holding in tears and my voice breaks as I try to speak. I haven’t seen my consultant since Sunday. I have no clear plan, just – sit, wait, slice tomorrow (Thursday), sit, wait, hope. And I have nothing left to give to my thoughts or feelings. Maybe I’ve cried it all out. 

Staff keep telling me that this is understandable, that I’m doing better than a lot of others would in the same circumstances and that I’m coping so well. They tell me I can’t see that because I’m.. me. When I apologise for crying at them and argue that I don’t need to be here (knowing how many people had cardiac arrests on this ward today alone), they tell me I don’t appreciate how serious the situation is, because I’ve gone from feeling so extremely unwell with my heart before the surgery that this still seems like nothing to me… But it isn’t ok or justifiable, is it? It’s ungrateful and ridiculous and really really not a good idea (brain, please take note). I just have no idea how to deal with this, no idea. I ask for help and just get told that given the situation my reaction is normal and human and ok. 

But how can it be ok when my brain is here like, “Right ok so I don’t know how to deal with this any more so let’s go into denial and refuse to switch IVs every few hours so it doesn’t feel like we’re in a hospital… And then let’s decide whether we’re going to just run away into the night or ask for a self discharge form…”(???)

How can it be ok if when the nurses explain that y’know… the grim reaper may gain a new customer if I did that, my brain is all “BUT WHAT IS THE POINT?! NONE OF THIS IS WORKING! It isn’t working and I’m terrified of everything getting worse and killing me so naturally let’s just wander down that route with open arms because hey at least then we aren’t out of control and in a crisis, just in a crisis.”(???)

Honestly, nothing is improving my physical health situation and now it actually seems to be deteriorating. I’m so scared it won’t stop in time to prevent the worst case scenario. I’m also scared by the fact that my brain can no longer face… anything remotely to do with hospitals… whilst I am an inpatient… in a hospital… relying upon some IV pumps 24/7 to keep me alive (luckily the most important things were connected BEFORE my brain shut down and so I’m still getting them 24/7).

Not even sure why I shared this, but hey. 

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.