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. 

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Comfort of… Bastille?

“As the world falls down around us

Give me something to remember

I am holding on

In the back of my mind

For dear life, dear life

Holding on

In the back of my mind

For dear life, dear life

Oh I, Oh I

I am holding on for dear life

Oh I, Oh I

I am holding on for dear life”

Bastille, Comfort of Strangers

Words fail me a little bit at this current moment. When I heard those song lyrics, I stopped dead. Everything melted away, and my brain curled up in those words like a comfort blanket. I had been fracturing, bursting at the seams, suppressing emotion that I couldn’t allow myself to feel but was most definitely there. I was torn. I was on the edge of letting it all go, of falling apart. And then I got a message from a friend asking if I’d heard Bastille’s new song. Immediately, I almost laughed out loud. Whenever I hit a tough time or get bad news or something, Bastille (the band whose music ended my emotional isolation in the back of an ambulance when I was… 16? if intrigued, see this post) seem to drop a new song or a new album.

I searched it online. Hit play. Listened until the chorus played, and this song just… took me. A total calm rose up and engulfed me and had I been alone, I may actually have shouted YES at the top of my voice. It was the same feeling I got when I heard Pompeii for the first time in the back of an ambulance, when I heard Good Grief for the first time as I walked out of a hospital ward after almost dying and being told that waking up everyday was pretty much like playing Russian Roulette… the same as I felt when they dropped a new album a day or two after I’d had surgery and was laying in bed writhing in pain until that haunting voice played  through my headphones and removed me from the world for the entire length of time it took to listen to all those songs.

I’m pretty sure this latest song is written about being in a relationship with another human (I may be way off there), which I most definitely was not, but the beauty about all forms of art is that people are free to interpret that art in any way they want. I have no doubt that this song said something to me that it was never intended to say when it was written. But it sort of woke me up to myself, it gave my brain an ally, it gave me words I could twist and put to something I couldn’t verbalise or even accept before. It was like a “Eureka” moment… It brought all the guards in my brain down and finally let me admit that I am not ok with how things went, I am not “not feeling” all the things I think I should, I had simply, as my counsellor noticed I do often, dissociated myself from the things that hurt too much to go near.

On the surface yes, I can ignore how I feel, I can tell myself I’m not disappointed yet, I can try to ignore the fact that three (wait, how many days ago was Wednesday?) days ago I had heart surgery (and not only did it not work, but I somehow feel worse, and the second part that needs remodelling if we have to attempt again was too close to my phrenic nerve so… asdfghjkl… and I have no idea what to do or where to go and it changes all of my imagined plans because is this all I am now? A tachycardic, fluid retaining, coughing, breathless, swollen, oedematous mess?) but in the back of my mind I am in the middle of a storm, clinging to this tiny shred of something that remains. Hope? Maybe. And I am being battered by emotions (not only from the past few days, not only from my health. There’s a lot hanging around and churning around back there), torn apart, ripped apart, withering, worn out, exhausted, beaten, probably ready to throw in the towel and walk to the Grim Reaper with open arms. In the back of my mind, in the part I ignore, there is a battle, and I am holding on for dear life. Paralysed by it all, completely lost, completely terrified, and just clinging to anything. That anything, right now, is this teeny, tiny hope that there is something that can still be done. And I didn’t realise that, couldn’t accept that, couldn’t work out why I wasn’t entirely happy and felt tense and bothered (or even admit that I was any of those things)… until I heard those lyrics and my great big deluded, ignorant conscious mind turned around and went, “oh yeah.”

And then… click. I am disappointed. I am falling apart. I’m devastated. I’m terrified. I’m wondering if I will ever be able to have a job, what will happen about the final year of my degree. Will I ever be able to go for a walk again? In the back of my mind I am still feeling all of the things I refuse to let myself acknowledge, and they have been burning slowly, like a fire. Those flames have silently eaten away at all the foundations that held me up. And the thing is, before I can rebuild, I need to crumble. Just demolish the wreck that is left and build something new to take its place, before the rot spreads. That’s kind of how I work. But I’m really great at pretending to everyone, including myself, that I am fine.

And then along comes a song, written by people who I never have or will meet, about a situation I probably can’t relate to at all… And it says all that needs to be said. Enough for me to stop hiding from myself, to let down the barriers, to accept what I am trying to shield myself from and have in doing so let silently destroy me. Weird. Awesome… Bastille.

Medicine saved my body. Music saves my soul. In ways that nobody and nothing else can. (Hey, it moved me enough to post twice in a few hours rather than twice in one month). It kind of brought me… Home.

I was so lost, and I didn’t even know where to turn or what to do or how I felt or what to reach out for, I was just crumbling and trying to pretend I wasn’t. And a song I’d never heard before just shut me down. Totally. Shut all of that. Down. No idea how long for.

This is why I never go anywhere without headphones.

 

Every Seven Seconds

Alone, at 2am, it hit me.

Weeks later than it should have, it hit me, and I was powerless to it. It wasn’t a near death experience this time… It was an emotion. It was something I should have felt but haven’t been able to for weeks, and it hurt so much that the heaviness was almost physical, it was an aching within me. I didn’t cry. I sobbed. Silently. Uncontrollably. And there was no dog for me to cling to. There was nobody to talk to, because I live alone.  There was just me, and this fear, this panic, this one single thought.

I don’t want to die. 

I’m not sure I fear death, in fact when I’ve been ill enough that I should have died it would have been a relief, an end to the immediate and intense suffering my body inflicts upon itself… But I’ve spent so much time in hospital that I haven’t lived yet. Not in the way I want to. I sobbed for something I will never be around to consciously miss. I sobbed because I was scared. Finally, here it was. The fear. It was a fear I had dissolved in my acceptance, a fear I had run out of the energy to maintain, and now here it was, fresh.

I’ve been told by many different doctors on many different wards that I could die. I’ve listened to doctors tell their colleagues they are losing me, that they can’t wait, that this is it. My organs take it in turns to rebel, to put me in an ICU or a cardiac ICU or wherever else I may end up. Sometimes they even team up. And I pull through somehow. I’m told that my body is playing Russian Roulette and it’s taken so many shots at me they’ve no idea how I haven’t found the chamber with the bullet yet. But oddly enough, it isn’t that what makes it hit home. Yes, nearly dying five times in three weeks shook me.

The thing that first got me was the fact that twice in three days I was nearly killed by a health hiccup that I never really classed as life threatening – and it wasn’t the first time but this time there was no thought or denial to slap over the wound that left. Although that triggered the start of everything, it isn’t what made me reach break point. It was hearing of other people my age who had been killed of my health hiccups that lit the fire. Most recently and specifically, hearing that a 19 year old boy treated by one of my health professionals had died of something I was already terrified of, after having evaded death due to it many many times. Type 1 diabetes killed him. And at 2am, I ended up watching a short film about diabetes and stem cell research. I ended up on the website about why the research is so important, and after scrolling down the page was faced with huge, great big letters that read, “Every seven seconds a person dies from diabetes.”

And I just couldn’t any more.

I don’t know what it was, but I now I should have been feeling it for a while, this panic… But not panic, but terror… But not quite that… About the uncertainty of the future, about how volatile my health is and how quickly it can take my life without warning and with me being aware but unable to stop it (as happened the other night when I just about saved my butt). It hit me like a slab of concrete in the chest and knocked the air from my lungs as I curled up where I sat on my bed, powerless to this thing tearing through me, these sobs bursting out of me. I sat there silently, crying so hard I couldn’t breathe in, and then gasping in air, trying to get a grip, and just going all over again.

Because the “harmless little normal thing” was suddenly this huge life threatening deal that it’s never felt like but always has been. There is no safe space in my body. I can go wherever on earth I want and I still won’t find a safe space because  I am tied to a ticking time bomb and it has to many fuses I don’t know which one is going to detonate it first. All I can hear is the hissing of the fuses burning down, and I stamp on them and try to cut them but they don’t stop burning and they don’t detach. Sometimes other people throw water on them and they stop burning away for a little while, and then out of the blue they reignite, or are set back alight by the health hiccup fuse that is burning alongside them. And I don’t know when. I don’t know when it’s all going to go off. I just know that it will and I don’t want it to. I really, really don’t want it to. And for the first time in… Potentially ever, I sat there and I looked at this statistic and it hit home. It hit home how fragile my health is, how fragile my life is. And in another first, I couldn’t find any way to handle that. At all.

I went to the website quoted as the source of the statistic that woke me up, and there it was, in black and white:

  • “Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes” source

  • “Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults” source

There’s so much misunderstanding around this condition. People, even people doing my biomedical science degree, think that I just can’t eat sugar, or that I ate too many sweets when I was younger or was overweight (confusing type 1 diabetes with the stereotype associated around the development of type 2 diabetes, in which the beta cells are totally fine and still make insulin). Type 1 diabetes is an autoimmune condition. The body doesn’t make any insulin at all. Insulin is required to let glucose into cells so that it can be metabolised. It also helps regulate potassium levels, which can cause cardiac arrest if they drift too far away from normal. Without metabolising glucose, you can’t carry out respiration efficiently. You don’t make enough of the molecule your body uses to provide energy (ATP), and the methods your body uses to generate it instead… Kill you. Now let me tell you why it gets scary.

Low blood sugars can kill within hours. They cause death through seizures, brain injury, brain swelling… Your body shuts down, because it has no glucose. Blood glucose levels drop without warning. Sometimes when you exercise (but sometimes that makes them increase instead for no apparent reason). Sometimes if you forget to eat. Sometimes because you did the maths wrong or you worked stuff out wrong. Sometimes because when you injected you hit a blood vessel… So many reasons. Few of them within your control.

High blood sugar levels are toxic to nerves, blood vessels… And can cause chronic health issues with other organs etc. When sugar levels in the blood are high, it means the sugar isn’t getting into the cells (unless you just ate way too much, in which case it’s slightly less dangerous and will kill you slowly instead of within hours). Your body has compensatory mechanisms, so it decides to get rid of all the toxic glucose in the urine. So you pee litres more than you can take in and become severely dehydrated despite drinking litres and litres due to an unquenchable thirst. This also wrecks your electrolyte balance. If sugar can’t get into your cells, your cells basically start to eat… you. They break down fat and muscle, and produce harmful chemicals that will kill you as they accumulate. This can lead to multiple organ failure, brain swelling, brainstem herniation… And irreparable damage.

People don’t see all the work you have to put in to try and stop that happening. When you eat, you have to factor in your blood glucose levels and calculate how much insulin you need to give to correct those, then how much insulin you need to give for the food, and then how much insulin is already active in you and therefore needs to be removed from the dose. Then you inject or in my case, use a genius little pump called Einstein who will calculate all this for you if you tell it how much carbohydrate you ate etc. You have to constantly monitor, because machines break and bodies react differently. What works brilliantly on one day may leave you in a life threatening situation the next. Stress, illness, exercise, the amount of fat in a food, the type of carbohydrate you ate, the length over which you gave your insulin… are just a few of the factors that can massively change the way your body responds to what you do to try to help it.

And here’s what people don’t appreciate. The longer you have diabetes, the more at risk you are of complications. What does diabetes do? What does it cause? It is the (now potentially just “a”) leading cause of blindness. It is the “most common cause of kidney failure” in the US (source) “About 60% of non-traumatic lower-limb amputations among people aged 20 years or older occur in people with diagnosed diabetes.” with around 73,000 of them due to diabetes in the USA during 2010 alone (source) It causes neuropathy (damages nerves so you can’t feel things, or so that your autonomic nervous system that controls heart rate etc. goes haywire). Diabetes is associated with cardiovascular disease and heart attacks, and deaths due to both of these conditions are 1.7 and 1.8 times higher among diabetics respectively (source). Add into that strokes and whatever else, and suddenly it isn’t so harmless. Insulin is underrated. Pancreases are underrated.

I don’t have any complications due to my diabetes at the moment, other than some changes to my retinas that come and go. I have plenty of other health hiccups, but they developed of their own accord and mostly they scared me more, although they are effected by my diabetes (because it effects pretty much everything). It’s the only health hiccup I’m willing to talk about in detail on here. There’s such a misunderstanding and lack of awareness around it, yet in the diabetes community at least once a week I am sent a story about another child or teenager or some other poor person who died as a result of undiagnosed type 1 diabetes, or diagnosed diabetics who got a stomach bug that caused their diabetes to become out of control, or who slept through low blood sugars and never woke up, or whose blood filled with toxic chemicals that made their brain swell… And there’s such a stigma around it. People think all diabetes is the same, and it isn’t. Type 1 diabetes is not caused by eating too much. Type 2 diabetes generally only causes chronic complications and isn’t associated with the capacity to kill acutely like type 1 does. And it still frustrates me. Because this is what it does. (If you feel like somehow sharing this and helping me raise awareness of the reality of something I only just accepted myself after having it for almost 2 decades then… Please do – unless I went/go to school/uni with you, in that case… Yeah).

And in the early hours of this morning. I realised that this normal, harmless thing wasn’t harmless at all. I took on the role of my beta cells, and I only just realised what a significant and scary job that is. This is the reality that nobody really knows is there.

But I got a grip. After about twenty minutes of pulling myself together and then just crumpling into a sobbing heap all over again, I got up (literally), I paced around the room a little, I waited for the numbness to settle, and I gathered myself back together. And then I curled back up on the bed, and I went to sleep. And I hoped that all my health hiccups would stay happy until morning. And I decided that I’d tidy my room and catch up on work and go and see some of London at Christmas (as I want to).

All to the backdrop of Christmastime.

That’s the point, you fall apart but the world keeps turning. No matter how much I’m given to deal with, time won’t stop to let me deal with it. So what else is there to do other than to switch off and hope that it hurts less in the morning?

By the way, it did (hurt less). In fact, it was forgotten. I guess when things get rough, you just have to keep moving so you’re harder to hit, and hope that life has poor aim.

No way but through.

 

Inside The Ice

My normal isn’t normal, and my fine isn’t fine. My acceptable is not acceptable in any other body, and the state I walk around in would have most people in a heap on the floor.

But they don’t know that.

Today I feel like there is a giant rift between me and the rest of the world. My friends think that because I went to hospital, I’m better now. They think that because I was let out, I am fixed. Far from both. I woke up today in a state that, had I left it and not injected into a vein every 30-60 minutes for 5 hours, would have killed me within 3-4 hours. Maybe less.

I woke this morning knowing what was going on in my body, but with no idea how to stop it. I messaged My Fellow Third Wheel and tried to get out of bed, eventually succeeding after a couple of hours, but after a shower I gave up on the idea of leaving my room, and relented. I got back into bed and hoped I’d feel less awful sometime soon. I didn’t (my improvement had plateaued), so eventually I just had to get up and get on with it. Dizzy and spaced out to the point that my vision and hearing kept going, I got dressed. My heart was racing, my head ached, I felt like I was going to throw up and pass out all at the same time… I was home alone and had been locked in the house, so I climbed out of the dining room window and walked to the shopping centre behind where my family live.

“You look SO tired.” Were the first words My Fellow Third Wheel said when I met him in the shopping centre, and he gave me a huge hug. He told me that for someone who a few hours before had been struggling to leave the bed, I was an idiot to have climbed out of a window and dragged myself out to meet him, when he was going to my house anyway. We talked. I bought some stuff I needed to grab (food and drink and flash-cards for revision… and dog toys for my everything – a chocolate labrador), and he insisted on carrying my rucksack because he didn’t want me to carry heavy stuff. He’d offered to grab anything I wanted/needed on the way over to my house, but I don’t like to feel weak, so I wandered around on the verge of unconsciousness and decided to meet him there. He knows what I’m like. He’s kind of my limiting factor in a really good way, in that he stops me being an idiot.

I didn’t want to face the world today. I didn’t want to see people because I just felt so disconnected. Healthy people can’t possibly understand and it is unfair of me to expect them to. People who don’t have physical health problems can only try to imagine, and in their minds I guess they compare stuff to the flu or whatever else they’ve had experience of (which is natural, we always try to relate things to an experience we’ve had). In their minds being let out of hospital doesn’t mean that there’s not a lot more you can do and you’re going to have to play Russian roulette every day, it just  means that you’re all fixed. People were acting like I’m fine now, they were playing everything down and I was finally being realistic and no longer in denial, but they kinda shrugged off my reality as melodrama and told me I’m going to be fine and I’ll be better soon… and it made me feel ridiculous. It made me feel dramatic and pathetic and it made me feel… Alone. So, so, alone. So I withdrew. I stopped replying to everyone to save my emotional state. Everyone except My Fellow Third Wheel, who seems to possess some sort of magical power to make everything feel ok.

His was the only company I could tolerate, except I didn’t have to tolerate his presence, I enjoyed it. He knows me in a way few else do. I can just totally chill out around him, I don’t even have to change out of my pyjamas (obviously I did today because I went out in public) and we can just sit in silence together for ages sometimes and it’s good because we’re alone but not and together but not. I didn’t have to pretend to be something I wasn’t and yet… I still couldn’t let him in. I couldn’t let him see the mess that I am, I couldn’t open up, I couldn’t say that I wasn’t ok, that I needed him and damn it could he please be there. I didn’t know how to say any of those things, so I listened to him tell me about a girl he’s super close with who has been having a hard time at uni (so he’s going to stay with her this weekend, and over the Christmas break he’s going to do something with her every day to get her out and doing stuff). I opened up a little bit, nowhere near to the level I used to with my ex-uni parents, but more than anyone else. He’s so chilled out and logical and sensible, and he’s also ridiculously blunt. That helps. He helped. He listened, and he was all When was this? and Why am I only just hearing about this? and Why didn’t you call me?

And then he was all I spoke to you for half an hour the other day before you even told me you were in hospital. Why did I only find out you were there on the day you were leaving? I only found out you were even in hospital because a nurse spoke to you and when I asked what was going on you said where you were. 

I had no idea you were in such a state, you sounded so happy on the phone.

I do. At the moment I do. At the moment I don’t know how to talk to anyone, don’t know how to let them in. So I act happy. Or (more commonly) I just don’t say that I’m not. But he saw through that. He sees through that. I needed somebody to see through that and then not only to stop there but… To pull me out. He’s the only person right now who figured out how to pull me out. He’s the only person whose life is free enough of issues for him to have the capacity to truly take on mine. But… That’s why I didn’t tell him.

Because all I could think back at him was You’ve done enough. You’ve done so much. You’ve put up with so, so much of my crap. You sat by a hospital bed with me for days, you slept in waiting rooms in ICU, you bought me food and you lost sleep, you hugged me when I was scared and while I cried and when I lost my mind. You were at the other end of the phone right up until I went to uni and… then the thoughts came out loud

“I didn’t think you’d be there like that any more. I… I didn’t think I could go to you with stuff like that. I didn’t think you’d want to hear it. It isn’t fair.”

We sat on the sofa for hours and he showed me stuff on his phone. We laughed a lot, and I forgot. I forgot everything. We walked my floof (dog) through the woods. I was meant to walk him myself, but My Fellow Third Wheel didn’t want me wandering around alone, so he took the dog and walked with us in the freezing cold. In the middle of a field the three of us took a selfie together, and in that moment I was so calm and happy that I’m glad I captured it. We encountered a German Shepherd dog and instantly turned around. It wasn’t on the lead or muzzled and ran at everyone and everything barking and growling. It bit a dog in front of us and I freaked. My Fellow Third Wheel gave me the dog’s lead and told me “Don’t be scared, it’s alright. I’m here. I’ll stand between you and it.” That. Right there. Is a true pal. I felt safer. He did put himself between us and the dog as it charged at us over and over again growling. My dog walked away when I called him, but when the German Shepherd came near me, my dog started to growl and I got super scared there was going to be a dog fight. My Fellow Third Wheel took the dog lead back from me and walked on, kind of comforting me at the same time.

I only walked a short way home, as we parted ways so he could go and catch the bus home. We messaged for a while, and I told him to call me if ever he freaked out again (as he sometimes does, leading him to wander around the world at 2am). He made me promise to do the same. I asked him if he was sure too many times to count. I told him it wasn’t fair, I told him I didn’t want him to end up hating me. I told him that everybody I’d ever let be there had dropped me and walked away and that I didn’t want him to do that.

That’s the wrong attitude you sh*t

[…]

Just agree

Stop

Agree

[…]

U lil sh*t

He sent me messages like that, until eventually, after him going on and on and on, I put two letters

OK

And he celebrated and made me swear to stay true to that deal. The thing is, I said no because I was thinking of him, but all I wanted was to say YES, PLEASE BE THERE I CAN’T DO THIS AND I NEED SOMEONE AND PLEASE PLEASE JUST BE THERE. He knew that. He, like so many other friends, told me to stop thinking so much of him and consider myself for a second too. He said if he can’t deal with something, he’ll tell me. But I know what a burden all of this is. I know what a burden it is because I live it and it exhausts me. I don’t want to spread that or share that.

But I am so, so glad to know he’s there. It feels so great to know I’m not alone. He has chronic fatigue syndrome, so understands the health aspect of my life more than most. He gets things in a way most people can’t. My brain seems to like that. (My other friends have been amazing too, and they want to be there, but I don’t know how to tell them how to be or even how to ask, and they have no idea how to be there in a way that’s helpful. They think things are better now and that I’ve no reason to worry any more, no reason to stress about my health, and that makes me shut myself away from them. Because I feel misunderstood and I don’t want to keep having to say it out loud – reality).

My nurse phoned me up while I was still walking my dog (after a few months of not responding to any calls/emails/texts from any of my nurses/doctors/consultants I finally for some reason picked up the phone) and during our conversation she told me a treatment option that may help me a bit costs £580 and then £200 in regular instalments… She wanted me to deal with stuff. She wanted me to make phonically and text her numbers and go to my GP to get vials of medication and stuff… And then, had we been in an episode of Thomas The Tank Engine, this would have been how the script was written:

Nurse: How have you been doing, by the way?

Me (internally): HahahahahahahaNOPE

Me (out loud): Good

Narrator: Things were not good. 

 

Nobody has any idea just quite how badly, or how seriously unwell I am right now. They couldn’t comprehend it, and they don’t, even when I try to explain. I look normal to my friends now, but my “normal” is actually quite seriously unwell, and I feel awful in ways they couldn’t imagine. My “normal” would be their dying. It kind of saddens me that nobody notices that I look unwell now. It saddens me that that has become normal, and that people think that’s me looking well. I showed them a picture of me well the other day and they couldn’t believe it. I looked like a different person. There was flesh on my bones and so much more colour in my skin, and I didn’t look “anorexic when you’re not even anorexic” as My Fellow Third Wheel says. They think I’m fine. And I am so, so far from fine. They’re happy and relaxed and how do I ruin that? They think I’m out of the woods, but I’ve only just wandered in. They think I’m in less danger than I was before I went into hospital, they think all of that is gone. They say they know I’m unwell “but not as bad as before right?” And how could they ever, ever understand? They never will, and I hope they never have reason to because I never want them to be able to relate to and therefore properly understand this. My friends are being amazing. They are there and they are trying but I feel so, so alone emotionally.

But with My Fellow Third Wheel… I don’t have that. I feel like this mountaineer with an ice pick has just hacked through the ice to reach whatever of me is left inside of whatever of me wanders around. And he has no idea how grateful I am for that (I tried to tell him, I’m bad with words right now).

I should probably do some uni work. I should probably do something. But I’m too unwell to do anything. I just can’t. I’m too unwell to even try. I’m unwell enough to use the word unwell and that’s a word that makes me cringe. Usually I say I’m Tony (one of my friends said I’m like “Tony Stark” in that I shouldn’t actually be alive, so she always asks how Tony I am today) or how stable I am (another friend figured out that ok is something I’ll never really be and unwell is something I’d never call myself).

I know I need to go back to hospital.

And I can’t go back to hospital. My own mind will not let me go back. I’m still waking drenched in sweat and tears from the nightmares induced by this admission. I can’t. This morning I laid there knowing how close I was to kicking it (far closer than anyone should be when they wake up in the morning), and I just thought I can’t do this any more. I don’t know how to do this any more. And people will call me brave for carrying on. But they’re wrong. What other option is there? There is no option but to carry on. There is no option but to hurt and fear and struggle and just… Try. There is no other way. Either I’ll get through stuff, or I’ll die trying, but either way…

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.