Where I’m At

Those of you who follow this blog will probably have noted that there are certain circumstances which drive me to post:

  • Things are great and I want to share that
  • Things are not great but I’m trying desperately to get a life
  • I need a place to vent 
  • I feel I should let you know I’m still alive
  • I’m in hospital
  • My world is falling apart a little 

You may also have noted that the long pauses in my more recent posts are usually driven by common situations too:

  • My health is so shockingly appalling that blogging is the last thing on my mind and I cannot function enough to read or eat or leave the bed
  • I almost died again
  • My mental health, reliant upon failing physical health, has deteriorated to the point where I am on the verge of a breakdown and possibly considering stupid and drastic actions to end the situation (which usually means ending myself) and the effort of fighting those thoughts consumes me
  • Things have been really really great and I didn’t have time to post 

Take a wild guess as to where I am right now. Almost any of the above would be right, because all of the above statements (except the very last point) are true. I have been awake for half an hour and already cried. I don’t cry, it’s something I hate to let myself do, and yet I also spent an hour last night unravelling and crying uncontrollably (until I remembered that the music of Bastille existed and pulled my thoughts away into their songs).

I had my heart surgery two weeks and two days ago now. It took six and a half hours. It was “extreme” and “challenging” and the people who came to see me afterwards had never seen anything like it before. I woke up happy, and immediately decided I had to raise money for charities that fund research into that area of medicine so that other people could have their lives changed too (and also so that others don’t have to experience the same things I have). And my life did change that day – my cardiologist put the entire world back at my feet. 

I can now walk AND talk. I don’t cough pink froth. I can lay flat, I don’t get breathless at rest or even when I walk. I can walk more than 5 metres without almost passing out. My resting heart rate is HALF of what it was (so FINALLY normal). It’s magic. Pedro the pacemaker is stepping up to the job of telling my heart to beat (the part of Skippy that tells him to beat is now dead). But Skippy, being my heart, is having a few teething problems. My blood pressure drops to 50 systolic and sits there for a couple of hours just because it can. And there’s a post-op infection. So I’m in hospital on a lot of IVs to try and keep me and my other health hiccups stable.

I’m in a specialist heart hospital in London. I’m miles from home and most of my uni friends aren’t in London any more as it is summer. I have nightmares and flashbacks to terrifying and highly traumatic events which occurred in hospitals when I was younger, and then wake up in a hospital bed and struggle even more than usual to persuade my brain that we aren’t in those situations any more. 

I have feared for my life with legitimate reason to, and a few days ago genuinely thought it was “curtains” to the point that I found myself sending final goodbyes to family members and friends because my case was complicated by my blood deciding to become acidic, and nobody knew how to manage the situation. The treatment I am on seems to have stopped working within the last couple of days, and I’m frightened about the severe decline that could happen whenever my body decides it hasn’t messed with me enough yet. I may need two more general anaesthetics in the coming days or weeks to prevent any further decline, and we’re waiting and waiting to see if they can be avoided. They’ve no idea how long I will be here, I just keep being told that it’ll be quite a long while. There is a lot of uncertainty, way too much time to think, a lot of pain, a lot of drugs, and a lot of emotion. And it just won’t stop. There’s no break, no time to get my head around one disaster before another strikes… and no more capacity to cope. I can’t cope any more. And so the tears arrived and I cannot stop them. 

The staff here pretty quickly learned how magical Bastille’s music is to me, and so I am frequently told to listen to it. I play their songs out loud into my hospital room as I sleep, and when I wake shaking and sweating and buzzing with fear, their sounds dampen down the flames in my mind and pull my attention and thoughts somewhere safer. Not many people here had heard of Bastille before I appeared on this ward, but it’s fair to say that they have now been educated, and the band has gained a few fans! 

I found myself in a place where nobody and nothing could reach me last night. For days I had been trying to hold myself together for the sake of those who are justifiably worried about the current state of my health. I know I’m lucky to have had such a chance taken on me and my heart, and I’ve been more focussed on making sure others can have access to that same chance. Last night though, reality became too heavy for me to shield others from the weight that is crushing me. Talking to my mum, I started to cry… and I wiped away the tears but they wouldn’t stop. 

My thoughts jumped into an abyss of uncertainty and hopelessness from which I thought there was no return until my reality changed, and that reality has the potential to become much better or… completely wreck my heart. Until that point, moments like that had fuelled me to want to raise money for charity even more, so that someone else could be spared from such feelings and moments. There was still a slight element of that, but also… I cried until I was too drained to really move. I just could not. And then I played a song. One song. (Pompeii, because it rescued me from an equally uncertain hospital situation the first time I heard it) and I could settle enough then to sleep. I don’t know how music does that, how it runs in to a mind on fire and floods away the flames, but I’m very grateful that artists decide to share it with the world. 

I guess then, the reason that I’m posting is because I don’t know how to do this any more. I am utterly, utterly broken and drained, and there is no break. I’ve been through worse, I’ve been in hospital for years before, it’s just tough to cope with this right now after so much, and even tougher to cope alone and with the trauma of PTSD forcing you to relive the most terrifying and traumatic experiences of your life over and over and over. I don’t know how to do this any more. I honestly don’t know how to be ok. I don’t know how to settle and I don’t know how to stop the tears because even when they don’t physically fall inside of me they’re raining all over the place. 

All I have, in this moment, is a heartbeat and Bastille’s music and… an awful lot of hope. I hope this situation changes. I hope I get the future I want and am able to raise money for the charities I want to help in the way I’ve already been planning. I’ve been too unwell and in pain (and on pain medication, but my body seems to get less high from it now) to post or really contact anyone, but today I just need… I don’t even know. Nothing can help because this is all on my body. And that’s a beast I don’t know how to tame.

I need to save other people from that, from this. I want them to have the chance I have had and I want to erase the fear and the hopelessness from the timelines of their lives by funding research that can help them to have chances like this too (minus all the bad luck afterwards, but hopefully with further research they can stop hearts getting grumpy about such drastic procedures like Skippy has). I am incredibly grateful to my cardiologist (who says this is just a blip). He’s given me a future and an entire life to live… now I just have to take that future back out of the hands of my body. Right now it feels very far away. But I will appreciate every moment of it, every step I take. And more importantly, I will use it to help others. Morally I can’t not try to pass this good on and I have big, big plans (wow I did not expect a positive end to this but clearly part of me is still alive and kicking). I just have to find a way to make it through today. And that… I just don’t know how. 

No way but through.

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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. 

My Anglerfish

“I know this is really rough on you. I’m sorry.” was the last thing he said to me as I walked out of the door. We both knew it wasn’t his fault, but I liked it – his guilt. It meant he cared. It meant he had enough of a heart to feel bad, and it meant he wasn’t wrapped up in the thrill of the challenge. It didn’t excite him, this new twist in my health, it bothered him. I was not, in his eyes, a puzzle to be solved – I was a living, breathing, vulnerable (sorry excuse for a) human in need of his help. And I liked that. I liked that in that clinic room I retained my humanity, even in his eyes. It’s why appointments with this consultant don’t scare me as much as all other appointments that ever existed/ will exist ever.

I walked in to find him pondering over the ECG trace the nurse had just done of my heart (you’d think after so many ECGs I would no longer be phased by random strangers seeing my boobs but NOPE, I still crossed my arms and avoided eye contact for as long as was possible – I’m shy).

“Hmmm, does your heart still feel funny now?” There was an inevitable furrowing of his brow as we discussed my recent hospital stay, and he turned back to the ECG trace. I knew it was bothering him even before he said,

“You have new changes on your ECG trace, I just need to get someone else to look over this, ok?” He wandered off with the ECG trace multiple times, and got a nurse from the pacing team to come and ‘interrogate’ Reginald (the thing that lives in my chest), but Reginald’s parameters had been set all funny, so he had no idea what my heart had been doing at all. Thankfully, this means that the bottom chambers of my heart didn’t do anything extreme enough to terrify Reginald, which instantly chilled me out… Everyone else, not so much.

My consultant ordered an urgent MRI, and also wants to give me a general anaesthetic to re-do the thing I had done last year. I have to go back and see him within the next month to see where we go from there. Best case scenario of the whole thing involves one or two general anaesthetics to allow him to poke about inside my heart – worst case involves three, because he’s not sure that the second surgery thing he might have to do (depending on the first one) will work. And all I could think when he started talking me through the risks and stuff (like surgeons have to) was I cant miss any more uni because they are going to throw me out and they are so unsupportive and uni is my life and oh no don’t make me choose help my brain is running away with itself excuse me what was all that stuff you just said? Why is uni worrying me more than you poking my heart? The world is messed up.

Apart from my justified concerns over having a general anaesthetic (or three!), I’m not actually worried about the possibility of my cardiologist poking around in my heart at all. I would go through anything to return to my normal standard of unwell. Anything. They can’t get blood from my veins… At all (even my arteries are now so underfilled/ scarred in the points at which they are accessible, that this is rarely a success either). We decided to stop the diuretics I am on, as I am almost back to my normal weight and my kidneys are a tad temperamental which means that if I stay on the medication I have to have blood drawn every seven days to make are my kidneys are still… Kidneying. (This is impossible, because they can’t get normal cannulas and stuff into me usually). If I stay on this medication, therefore, they would have to put in another portacath/ port – and the last one of those I had gave me sepsis, nearly killed me, and went too far into my heart and poked it all the time causing dangerous arrhythmias (paediatric surgeon not so great).

This is something many doctors have been pushing me to have done recently for many different reasons (long before I started this new medication) – allow them to insert either a Hickman line, a third (or would it be the fourth?) PICC line, or another UFO (what I called my last port because it looked and felt like someone had crashed a small UFO between my ribs, and after a pretty long time, a load of alien invaders/ bacteria/ ninjas, came wandering out of it to invade my bloodstream and basically refused to die).

When I was in hospital two weeks ago they sent an anaesthetist down to put in yet another central line (I’ve had a ridiculous amount of these, they usually put a new one on every admission, but even these are now impossible to insert because I’ve had so many that all the central veins they usually place these lines into are scarred and uncooperative). I was again told that the situation was ridiculous, especially as I end up IVs so often to sort of completely save my life… But it was only when I had a nightmare the other night which simply involved a consultant (it usually ends up being a consultant, after every other grade of doctor has tried – my veins attract everyone everywhere it would seem) who came to try and take blood, that I realised I’ve had enough of people taking over 20 stabs at my veins, and then my radial and femoral arteries, before they eventually admit defeat. Every. Single. Time.

After the appointment, lunch in the hospital restaurant, and a stroll past the hospital fountain (as if a newly renovated/ partially rebuilt hospital in The City of London entirely and only for broken hearts wasn’t kind of awesome enough, they centred all the buildings around a courtyard with trees and an awesome fountain, and then decided to have a museum there too… I mean come on…) I went back to university. Home to halls. Although, it did’t feel like home. It felt like a scummy student flat shared with at least two people who seem to mistake our kitchen for a cesspit (there we go, I held that criticism in for an entire year. My flatmates can be completely gross. COMPLETELY. We’re talking, going home for two weeks and leaving un-scraped plates in a sink full of what ends up being grey, mould-infested water… And it often smells like something has died. Just… No).

I’m slowly managing to walk very small distances again. I’m pushing my body and I know this is at times incredibly stupid, but I don’t want to be limited by it, it is just going to have to deal with my determination to human. Nevertheless, retrieving Winston the wheelchair from my uni room (was too big to fit in the tiny car I was picked up in last time) was a very good idea. I was also reunited with my guitar – after a small incident in the end of last year involving what they were pretty sure was meningitis (they let a junior doctor do the lumbar puncture while I was in intensive care, and after the third time she tried and failed, resulting in the most intense pain I’ve ever felt in my life, I refused to let her anywhere near me with a needle again. They gave me the treatment for meningitis anyway, I got better, it was all ok in the end) and cerebral oedema, I kind of completely forgot how to play guitar. And how to write. And what a lot of words meant (all fixed now… Apart from remembering how to play the guitar – I taught myself before and I’ll do it again!). I grabbed all of my sketching stuff and the shelf full of books I never found time to read – both of which I intend to make full use of over the summer!

Processed with MOLDIV
Winston has alternative uses when the walk is so short that I don’t require his assistance myself – saved us a lot of extra trips! The plastic tub at the bottom of the pile that is stacked up on Winston is literally just full of books and a few art supplies – aka, everything necessary for a summer of awesome rainy days (because let’s face it, this is England).

My bonsai tree was also liberated from the cess pit. It’s a pretty amazing little plant – it survives for months without water when I forget that it exists, and whenever I nearly die, I return to find all its leaves dried up and falling off, and become utterly convinced that it has died. I water it, and a few days later the old twigs dry out and new shoots start to grow from the trunk. I’m pretty sure that my body and this bonsai tree are the same – we both survive when nobody expects us to, and when we totally shouldn’t. I got him before I started university and named him Harvey Tree (don’t even ask me why because I have no idea. I like to name everything ok, it makes life less boring).

I submitted my extenuating circumstances form to the reception of my school at the university, explaining why I had missed my exams. Then I got in the car and was dragged off into that involuntary sleep which poor health generates, the kind that you wake up from feeling like you never slept at all. I woke up back in Kent, and was smothered by my dog as I opened a parcel that had arrived. I’ve been ordering lots of random online junk over the past couple of days, but I ordered myself four books to plough through (in as many days or less) All Quiet on the Western Front and three Dan Brown books. I also FINALLY managed to fit normal shoes onto my feet now that all the extra fluid that had pooled in them has been kicked out by my kidneys. So today was another good day. I’m lucky. Right now I’m about to dive back into the 864 page book I’ve been trying and failing to read for the last couple of days.

“Just keep swimming, just keep swimming” – Dory, Finding Nemo

(my little brother used to be obsessed with this film when it fist came out, and he watched it so many times a day that he wore out not one, but two DVDs of it!)

I mean seriously though, that animated fish was totally right – if you don’t keep swimming into the big deep dark scary trench even when you’re scared, and find an even bigger scarier anglerfish (link to the scene from the film) that scares you even more, how else are you going to find light to read the diver’s mask that you lost, and discover that the thing you so desperately want is at 42 Wallaby Way, Sydney? How?! (also I’m quite impressed that I remembered tall of these details without searching the internet for the clip that I haven’t seen for a couple of years)

My point is that health, and life, even love and trust, get scary sometimes… But the things that scare us the most, sometimes, in a weird way, help us find and realise things we never would have otherwise.

There is an anglerfish in every abyss, and sometimes instead of eating you alive, it’s light will show you the way out of wherever you are, show you things about yourself and humanity that you didn’t know before, and give you back the things the darkness (physical health, depression and mental health etc) took from you and hid from your view right in front of your nose.

This whole health situation is my abyss. Somehow, a very small part of my brain just kept swimming, unsure why, not even sure what it was heading for, just getting lower and lower and losing sight of any light at all, but determined not to give up. I guess being anaesthetised to let a surgeon poke my heart is my angler fish – it’s generally a pretty scary thing I guess, but all I can see is the light, the potential benefits, the diver’s mask it will illuminate that will show me the way to the rest of my life (and to having a quality of life again). Right now, I’ve lost the map, and I am aware that the only way to find it again is to chase that anglerfish.

I want to be able to go for a run again (but right now I’ll settle for being able to walk… I miss walking my dog along the routes that neither of us can run any more, it was our ‘us’ time.)

It Hit Me In A Traffic Jam

Life provides sudden and unexpected reasons to feel lucky, my family has just been reminded.

I’m writing this post whilst sat in a traffic jam, having just witnessed what can only be described as ‘the parting of a metal sea’ by a police car which decided the hard shoulder (if you aren’t British and have no idea which part of the road I’m talking about, ask your search engine) was clearly too mainstream for it to drive upon. Somewhere a mile or two in front of us, a lorry and a car did a deadly dance in the middle of the road a little while ago, leading to an overturned vehicle, the closure of the road, and the arrival of emergency service vehicles like florescent ants swarming a nest. With each passing vehicle, my heart sank a little lower as I worried about the wellbeing of people I will never meet. In other words, my humanity kicked in. We pulled as far off of the carriageway as we could get, to let various emergency service vehicles pass, and like the various dog walkers and people in desperate need of emptying their bladders that wandered past us along the road, I got out of the car and set my feet down on the tarmac that, a few minutes earlier, we had been travelling along at 70mph.

The parting of a metal sea. The view of the other side of the road from where I stood. My feet on tarmac. These are the sort of photos that happen when I am ridiculously bored in a traffic jam – I’m sorry.


As cars sped in the opposite direction just a few feet from where I stood by the central reservation, and the air they displaced punched me over and over again, I (suddenly, finally) felt safe within my body, and overwhelmingly grateful. I’m alive. I thought, as the emotional aftermath of the past few weeks finally surfaced. I don’t care about the current state of my health, there is probably someone currently dying on this road and I. Am. Alive. Damn I’m lucky. For starters, at least my world was still the right way up. As my 13 year old brother started to moan about the delay, and reminded us all of his reluctance to come to Ipswich with us in the first place (luckily I don’t think he realised that we are still 50 miles away), my mum summed up my general feeling towards the whole thing.

“Hey, we’re lucky it wasn’t us, it could just as easily have been our car.” At which point everyone in our 4×4 felt incredibly lucky.

Unfortunately, this has not been the type of traffic jam where people wander between cars sharing out their biscuits, everyone decides to have picnics in the middle of the motorway, and people are civilized enough to form two separate queues (one for men, one for women) as they wait to use the designated bathroom/ pee under a motorway bridge (as happened one time before when they shut the road we were on due to an accident during the summer). It was however, the kind of traffic jam where the joy and relief of being alive hit you harder than a speeding car.

We’re all at least a little guilty of abusing our lives, of taking our pulse for granted. As I stood on the hot tarmac, leaning against the car to keep myself upright, with my heart skipping beats and generally having a little bit of a rave within my chest, I decided that it can continue to do that all that it wants. I don’t even need a regular heartbeat, I am now even more appreciative of the occasionally confused one I’ve got – low blood pressure or normal blood pressure, normal P waves,  no P waves or inverted P waves; PVCs or junctional rhythms or SVT or atrial fibrillation… As long as my heart is actually doing something, I have more than enough.

This is going to be ok. You are going to be ok. It already is, you already are. And I nearly laughed, I nearly cried. Another car went past, and as the air tore through my hair (which in response to the deterioration in my health has decided to fall out in clumps like rats fleeing a sinking ship) I had another thought, don’t waste this. Do not screw it up. You’ve had your wobble, you’ve fallen apart, but this time is clearly different and if you don’t take advantage of that you’re an idiot. No feeling sorry for yourself. You have a life – live it. Even when you feel like the living dead.

Yesterday I mentioned that I wanted to start living my life a little differently, a little more for myself. Last night, I finally said yes. I’m now in the process of writing an article for an online magazine. Right now, I’m very glad I bit the bullet and went for it – especially as I managed to keep all of my teeth.

(I’m actually having to post this from an Audi dealership in Ipswich – Padge is buying one of the cars they use for test drives at a discounted price. He seems to have the whole me first sometimes because I occasionally deserve nice things mindset totally under wraps)

I Made It. (I think? Potentially? Almost? Maybe not yet)

Yesterday was a date that I have been thinking about for months – 26/05/2016 – the moment when my first year of university was over, an achievement that in itself is a huge middle finger in the face of everyone who told me I would never make it that far, and a bit of a slap around the faces of those who gave up on me long ago and suggested that I gave up and attempted the whole thing again next year. For all of those months, I thought about how it would feel to complete my last exam, to sit in the pub with my friends right afterwards free from exam stress, feeling on top of the world for proving (what felt like) most of it’s inhabitants completely wrong.

And yesterday it happened. Exams were over and relief washed over my course-mates like a tidal wave as they were able to shut the hideous things out of their minds. They went to the pub after their last exam. The had a barbecue in Highbury fields. They drank themselves to oblivion. The It’s finally over! Made it through my first year messages flooded my group chats and social media page… And I wanted to make posts like that too… I had also planned to make a blog post summarising my first year of university, but suddenly I didn’t feel like I had a right to do either of those things.

I spent the day of our final exam in a coronary care unit with bilateral pleural effusions (fluid around my lungs – a thing which at this moment feels about as pleasant as it sounds). I didn’t sit my last two exams. Therefore, exam season is over, but I haven’t finished my first year. I can’t switch off the exam stress, and the outcome of this year is still very much within my control until the first two weeks of August, when re-sits (or in my case, two first-sits… and however many re-sits I have to do) will take place. I have to wait a couple of months longer for the relief and the overwhelming sense of achievement. Don’t I? Or have I actually managed (only just!) to survive my first year? I’m not sure, I can’t figure it out. I couldn’t help but share in the relief a little bit, but it runs alongside anxiety over the exam papers I have yet to see. With the state I’m in at the moment I’m also worried that I might not be fit to sit my exams in August anyway.

Somehow, this still isn’t getting me down. Sure, this thought process and the confusion it throws out makes my mood stumble a little whenever it decides to return, and I do feel a little inadequate, but right now I’m riding another high.

Because I did graduate yesterday. I graduated from the coronary care unit.

I think I’ve at best got only a third class degree in Being human (aka existing) because I’m not too great at it right now, but with some new medications and an increase in my Ivabradine (aka ‘heart tablets’) I was untethered from the 10 ECG leads I’d been connected to for 6 days, and discharged in the late evening.

The porter that made this possible by taking me to the main entrance in a wheelchair, was an awesome individual. He turned out to be from the same area of Kent where my family home is, and after a long conversation about dogs (during which we decided that big dogs are better, because, to quote him “Dogs should bark, not squeak”) and other stuff, he stood by the front of the hospital with me while Padge went to get the car. He’d had heart problems when he was younger, and had been in hospital a few times, so he understood the situation pretty well, and kept wishing me luck. He was also probably the millionth person to tell me that I’m very unhealthy for someone so young, as if I might have somehow failed to notice this (to be honest it’s all normal to me now and I’m not dead yet so I forget that this stuff isn’t ok) In the few minutes we stood talking I’m still pretty sure he’s given me more support than any of the university staff I’ve tried to seek help or guidance from via so far in 2016 (there is, of course, an exception or two. I think.). I feel this is both sad and completely hilarious at the same time.

When I walked through the front door, tired and dizzy, a certain chocolate labrador himself grew dizzy with excitement. He spun round and round in circles before demanding cuddles, and from that moment onwards has refused to leave my side, which is brilliant, because it makes me feel… Incredibly necessary – deep down I think we all want to be missed because it shows that we mean something to someone somewhere. Thankfully the gaping hole of my low self esteem is labrador sized, and the spikes of loneliness and depressive behaviour he exhibits in my absence are easily and only smoothed by my hand stroking his fur – we’re kind of like emotional symbionts (oh dear, I apologise for my biomedical sciences student brain. I am imagining my dog as a mitochondria with a labrador’s face right now… Or the pair of us as an enzyme-substrate complex… Can you tell that I love my degree? Also yes I loved that metaphor enough to put it in bold)

I tried to get a picture of him last night, but either his tail was wagging so vigorously that his entire self was moving with it, or he was running around me in circles so fast my phone refused to focus, or nudging me to get me to cuddle him (which made it impossible to hold my phone still) – all of which stopped me getting a usable picture. Eventually he just sat his entire self on my lap, by which point he was freaking out with excitement to such an extent that it was like hugging that tasmanian devil character from the Loony Tunes cartoons (if you don’t remember that cartoon character then a – that reference is clearly lost on you, so I apologise, and b – you missed out on a childhood classic). He finally settled down once he had managed to wrap himself around my legs and was laying on my feet, but positioned himself so that every now and then he could lift his head to stare right into my eyes in a way that kind of said, Are you still there? Are you ok? Don’t even think about getting up I’m too comfortable. Whenever we made eye contact, I heard the thumping of his tail against the wood floor, and was immediately overwhelmed by ALL THE FEELS.

The situation was the same when I made my way downstairs this morning. And my day is brilliantly summed up by the following images:

“You’re home! Now give me cuddles and never leave me again” Feels good to be reunited with my bestie! Here’s a picture of him completely freaking out, because when you’re this excited and your paws can’t get a grip on the kitchen floor, the only way to be is upside down! He’s such a derp sometimes

 

He isn’t allowed on this sofa, but once he decided he was going to sit on it I couldn’t physically force him to get off, and he refused to move. I almost died at the cuteness when he moved straight onto my lap and went to sleep, and decided any future efforts would be to make him stay like that forever. My mum would kill me if she found out.

In a couple of months I’ll tell you how my first year at university has gone, when I can say so without being a bit of a fraud. I ‘made it’ yesterday anyway, in other ways – I was given much bigger reasons to smile.

Thank you to all the wonderful humans who have helped me keep myself together over what could have been a completely awful few days – every like and comment on a blog post, every message, every phone-call… It made me feel like I mattered, and that I hadn’t been forgotten this time. You all, of course, know who this applies to, but what I don’t think you realise is that thank you will never be enough. I also discovered have the best friends anyone could ask for. The best. Thank you for killing the loneliness that tried to grow within me. I owe you guys the world, but unfortunately all I can offer you is a message of thanks at the end of a blog post. For now… 

I Don’t Even Know What This Post Is, I Apologise In Advance!

“Can you breathe alright?” That’s an odd question to be asking. I think, just about functioning on the two and a half hours of sleep my distressed brain managed to grab last night. And then I realise there must be a reason she is asking,

“Yes? Why?”

“The scan you had yesterday shows fluid on your lungs.” Really? Even after the diuretics? But I could breathe. You weren’t even looking at my lungs were you? The woman told me there was nothing obviously alarming. She said she was scanning my kidneys. The doctor listened at some point before that and said my chest was clear. Am I even awake yet? Is this a messed up dream? Did I eat too much pizza? So. Many. Thoughts.

“I mean, I couldn’t stop coughing or actually breathe the other night (recounts details of other night when my lungs sounded like a bowl of rice crispies) but I feel a lot better now.” Correction – I have actually just adapted to not really ever feeling like I’ve filled my lungs, and now that she’s left the room and I’ve had time to actually think about breathing, I’ve realised this isn’t how it usually feels (oops). You know when you need to take a deep breath? It feels like that. All the time. And even when I inhale fully I feel like I still need to breathe in more. Hmmmm can I hide and/or ignore this well enough to get home? Or should I mention it? This of course, depends on my level of freak out on the next occasion that I encounter a doctor.

“I need to speak to my boss. And Dr (whatever-his-name-is) is back tomorrow, we’ll talk to him too.” Excuse me wait what what WHAT WHAT?! TOMORROW? NOPE. Infinite. Levels. Of nope. I said one more night. Yesterday. I HAVE NO MORE CLEAN UNDERWEAR! 

My bank account can’t afford for me to be in here any longer. I’m being serious. Last night I decided that I didn’t want other people to go through similar circumstances as this and stared throwing my money at various charities I thought might find ways to stop it… I also treated myself to a few congratulations you haven’t had a meltdown yet presents (because motivational quotes on string bracelets were clearly a necessary purchase… Help I have a problem. Online shopping is a blessing and a curse) I know the amount of money I donated will probably only buy a research team a teeny tiny microscope slide or a single pipette, but every little helps. When I was 14 I wanted to devote my life to raising money for charity. I may not be capable of completing physical challenges and sponsored events any more but that part of me is still very much alive and kicking. I hate the thought of somebody else stepping onto an emotional rollercoaster like this because of a physical one. 

On the plus side, to quote my nurse yesterday, within an hour of being given ‘water tablets’ I’d “gone from pregnant with twins to beach ready” The diuretics did exactly what they were supposed to; all the fluid sitting in my abdomen magically returned to my bloodstream, allowing my kidneys to kick it all out, and meaning that my bulging abdomen has shrunk to such an extent that we can now finally see where my ribcage ends. But not my lungs. They did not, apparently, want to empty themselves (totally explains why I can’t lie flat). I mean seriously lungs, get it together! Not cool! In less than 24 hours I’ve lost 2.3kg (despite the amount of pizza I consumed last night)… But I’m still obviously retaining water because there’s a fair amount of weight left to lose. Deep joy.

Probably skip the next paragraph because medical jargon. If that sort of stuff interests you… Read on.

I spent most of the night watching TV, with unusually frequent palpitations and occasional chest pain. My P waves (a feature that is frequently missing from my heart tracings, you don’t need to know what they are to understand this bit.. I think) returned from their lads holiday but decided they wanted to be upside down. The monitor kept insisting that I had abnormal heart rhythms originating in the top parts of my heart. I took photos of the squiggly lines every time I felt weird, and googled heart tracings until I found ones that were identical. My research led me to believe I was completely fine, and that upside down P waves and an upward sloping ST segment (even with the irregular heart rate I experienced with it) was harmless (despite the fact that it sounds pretty alarming. Thank you cardiology textbooks, for all you have taught me – You can tell I’m doing a degree in biomedical science haha. Also thanks to denial, for y’know… Being a thing). Occasionally chest pain and weirder stuff (which the Internet said can occasionally be benign, so I decided clearly was) occurred, but by this point it was 4:30am so I went to sleep, still not thinking anything of the fact that I had to sleep sitting up in order to breathe.

I’m not sure if I was woken up by the heart monitor freaking out (the bottom chambers of my heart kept beating too early for a couple of beats at a time. Feels weird, isn’t anything alarming unless they do it for more than three beats I a row), or by the palpitations which this was clearly causing. The machine was all “this is happening too many times in a minute heart, could you just not” (ok well it said it in a different way but yeah) They tried to record the event and, as the nurse watched, my heart decided to nosedive from 120bpm to 80bpm within a couple of seconds (which, for the record, feels bizarre). Go home pacemaker, you’re drunk!

For the entire morning I’ve had alarms of “missed beat” and random stuff such as this… 

This machine is neurotic. It keeps having hissy fits for no reason. All of the above is totally safe.
  

hmmmm as I wrote that caption it did the thing for three beats in a row. That’s ok 😅 it just needs to stop at three because I AM NOT staying here for much longer
 
IMG_8283-0
😐 5? Really? Now?

It’s happening more and more frequently, the crackle in my lungs is back, and I am still here boring you all to near death in hope I may get some company. (I’m joking because who is even reading this post any more?) 
But trust me, I’m finding a way to get out of here today. I have to.

I Have A Feeling/ A Force To Be Reckoned With/ P Waves On Tour

How did I cope with not sitting my exam this morning? Surprisingly well, actually. I did the only thing that ever successfully distracts me from other stresses, and threw myself into the effort of studying (just as my heart threw itself into the effort of being a complete idiot). 

During the most stressful week I’ve had over the last few months (ironically enough they think it was probably the exam stress that wrecked my physical health even more) I’ve remained oddly calm, because that’s what the situation demands. My heart is doing enough stressing for the rest of my entire body, yet I can’t find it within myself to worry about that (or to add to it). 

This afternoon my blood pressure finally returned to some sort of normal range, after two days of being ridiculously low despite IVs (A fact which at times caused a ripple of panic)… My heart rate… Let’s just say if my heart was a car I would currently have a twelve month driving ban for excessive speeding. My oxygen levels also seem to fluctuate between normal and low like some sort of exotic foreign currency, but I got sick of the machine alarming, decided it was wrong, and just removed the probe (which in my mind completely solved the problem).

Other than seeing the consultant this morning and having bloods drawn (even the phlebotomist expressed her surprise at how reluctant my veins were to give up any red stuff, which was a shame because she needed 5 bottles of it) I’ve managed to avoid most medical staff apart from the CCU nurses and the specialist nurse from my endocrine team (who is trying to overcome issues complicating the management of my diabetes) for the entire day. This is reassuring. Even more reassuringly, the echo (scan of my heart) they did yesterday is no different to the one my cardiologist in London had done just before I last saw him in late April to discuss the stupidity of my heart’s reaction to general life, so I relaxed considerably at that stage.

The TV that was kidnapped from my room has finally been returned, and shortly before its reappearance, my mum popped in for 15-20 minutes with a large pizza, which the nurses were horrified to discover I ate mostly by myself… Followed by crisps… And a sandwich (my appetite has finally returned, which is further evidence that I’m getting back to normal).

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Yes this is a picture of pizza. After days of not eating properly and awful hospital food, it was the best pizza I’ve ever tasted in the history of ever, so it totally gets to appear in this post ok?

The swelling in my feet and abdomen has worsened again, but the doctors are waiting for the results of a load of blood tests before they give me any medication to get rid of the extra water that’s causing it. 

… For some reason they are still keeping me in the coronary care unit. And now that I feel less near death this seems entirely uneccessary and I feel like a huge bother. I have apologised profusely all day long, and been almost laughed out of the building for just as long in response. They say I’m sick and I need to be here, that doctors don’t keep people here for no reason… But I feel fine now… I am fine… Unless I stand up (I’m working on that one). I asked to go home this morning, and the consultant said “24 hours” which hopefully means I can leave tomorrow and just lay around doing nothing until I see my usual cardiologist back in London next week (I’m under the care of multiple doctors here for different because more than one thing is wrong with me, so hopefully they will all agree with this plan)

The student nurse and I have been making each other laugh all day, which along with the endless cups of (decaffinated – this is a unit for sick hearts after all) tea, and the likes and comments I’ve been getting in recent blog posts, seems to have been the medicine I’ve needed all along.

I’m feeling like such a stereotypical Brit right now

There was the occasional furrowing of a brow or two as the monitor I’m hooked up to alarmed in response to my high heart rate and/ or low oxygen levels, causing the nurses to wander in and ask if I felt ok – but I’ve felt fine. I told them the machine was lying, not me, and after some raised eyebrows and a few minutes of observation they eventually accepted that I was fine… Despite the absent P waves on my ECG trace (I’ve decided that as they have no exams they’ve gone on a bit of a lads’ holiday… P waves on tour!)

I spent most of my day playing Lego Star Wars on the cheap tablet I bought myself (as a late birthday present… during a physiology lecture), sleeping between my attempts to revise, and sending emails to various members of university staff, and an awesome human being that I met through this blog (you know who you are, thanks for everything, really)

The guy I met with from my university’s disability services somehow knew a fire alarm went off in my exam the other day, and that I’ve been using a wheelchair, and unbeknown to me had already emailed me to discuss how the university could/ should provide additional support. My gratitude was instant and overwhelming. Not only did this service not let me down when I needed support, they actually offered it, they actually cared (I don’t care that they are paid to, so is everyone else in the uni and it doesn’t seem to mean much). After re-reading the words multiple times I nearly cried with sheer relief before agreeing that yes, we should meet to discuss my support at university, but only because I didn’t feel that it had been there. He responded to apologise. I immediately decided he was a legend. It was the most helpful response I’ve received all year.

I have a feeling that things are about to change for the better, which is great, because right now they could be so much worse.

And if change isn’t on the horizon, I will just have to force it. I’m starting to find beautiful things in the mountain ranges life keeps putting in my path. For starters, I seem to have relocated my optimism among the latest cluster of jagged peaks. It’s stronger now it’s spent a few months fending for itself. It seems to be a force to be reckoned with. 

(What even was this post? I don’t know. I struggled to follow it and I wrote it, but it still felt worth posting for some reason so… Here we are. When I’m feeling better – and by better I mean back to my usual level of (slightly less) awful – my posts will be too. Also yes this post has three titles, I just edited it and added another one, I should probably stop now… I’ll do that. My bloods are off the scale unreadable and I’ve persuaded everyone to stay relatively chilled out about it after their initial panic (I’m sure that’s meant to be the other way round haha), but I should still probably sleep or something… Actually no, I need to revise some more for the other exam I won’t be sitting… Ok, seriously, stopping now. Sorry)

There Was Something Left To Break/ It Can’t Fail It’s Dead To Me

Dealing with my health backfired horribly. Stupidly I decided to involve my mum, thinking the situation there had changed, and after getting in a mood and waiting in the car while I went to see the GP at a walk in centre, she completely broke down when the doctor said I needed to go to A&E, and pretty much said she wasn’t taking me there. And it broke my heart to watch her lose it. She told me she was done. She told me I was killing her. She told me she couldn’t take it any more and let out all of her frustration (which I completely understand and don’t blame her for at all) at the cause of it – me. I rapidly lost the will to live as she went on about how the family would be happy without my health and that I had no idea the impact I have on the family dynamic (I do, and the guilt and self hatred for that was already there). She shouted for almost an hour, and I knew I just had to let her vent, I just wished it wasn’t at me. I tried not to cry as I fell apart from the inside. But eventually I sobbed. Ugly, unstoppable sobbing. So much I was nearly sick. 

And then my dad and little brother got home and it was 2 parents vs me. And I just sat. And listened. And hated myself more and more until I couldn’t even let my dog near me because I couldn’t understand how anyone or anything could possibly care about me. I felt like less than dirt. And my mum sat down next to me and I thought she was going to hug me but she was so frustrated and tired and upset that she went off on one again. And there was nothing left to break. Then she genuinely wanted a hug and couldn’t understand why I could hardly look at her. I gave in. I did what she said. I said sorry over and over but it meant nothing to her and she just kept going. She said today she didn’t mean it but this happens over and over. She said she understood how difficult it was for me but she doesn’t. She started a cycle of self hatred and self destruct that I don’t know how to stop.

But now I’m at the hospital. Not with my mum. She’s working. I didn’t feel too bad, but the swelling in my legs spread to my abdomen. They were totally calm until they did an ECG. The nurse repeated it. The panic rippled through to the doctors until they called me through to the room the doctor was sat in and put me on a trolley, essentially making me skip the two hour queue, due to concern about the state of my heart.  

 

Not where I wanted to spend my day – staring at a crash trolley instead of my revision notes
 
I’m stuck in majors (by myself, my parents currently have no idea what is going on), and they’re talking about the possibility of decompensated heart failure or something, and saying I have to stay for several nights at least. They think it’s been significantly worsened by either arrhythmia or a clot on my lungs. Dear heart – could you just not? The doctor that just saw me was young, totally hilarious and a bit of a legend, he went to the rival London med. school of my uni and is totally chilled about my epically failing heart. I just want some diuretics and then I’m all good. I can’t do this to my family again. Killing them is killing me. In fact, it killed the person I was a long time ago. I thought there was nothing left to break. I was wrong.

I’ve broken a part of me that I’ve always treasured – my mother. And I don’t know how to live with that. Mum, if you ever read this, I’m so so sorry. You kept asking how you ended up with a kid like this and I’m so sorry. I’m so sorry it was me, and I needed a place to vent too (my mum is amazing and I love her so much. We all break.)

Update: Great. Now my diabetes is super upset by the heart failure. So they are having to treat me for this too. I just want to finish my exams. I’ve so nearly survived my first year of university. So. Nearly.

The right side of my heart is dead to me (almost literally, as it turns out, it’s being a particular idiot today)

The doctor told me that my attitude to everything and the way I’m dealing with it is inspirational, and that I have an awful lot of health problems for one so young which made me even more admirable. Firstly, what was I supposed to do other than live through that moment? Secondly, I was smiling to stop myself crying about my mum. Nobody really has any idea. Even I didn’t.

Like I said, I was wrong. There was so, so much more left to break.

I’m sorry that this is so random, I’m blogging to feel less alone and am aware this is a pile of rubbish. If you made it this far then thank you!

Of The Heart And Of The Mind

“So you see, the top chambers of your heart are just chaotically sort of… quivering, instead of pumping.” Ok, well the top two chambers doing that is significantly less dangerous than the bottom two, was my initial thought, as the doctor pointed out features on the ECG trace she’d placed on the bed next to me. “It’s usually seen in older people with weaker hearts.” That figures, my body doesn’t like to act typically. “The bottom two chambers are also beating at an irregular rate. If you look, these peaks are all different distances apart.” Confused ventricles, less good. But at least they are beating, even if it’s stupidly fast for a few beats and slower for the next few. “And here.” The end of a slightly chewed biro runs over about an inch of flat line on the graph paper, flat ground between the mountains of two heart beats. “Here it forgets to beat… It misses a beat.” I’m not sure if that’s better or worse than the ventricular ectopics (heart hiccups) I’d thought I was feeling.

A few hours later she returned with another tracing of my heart. It had settled down, and I had felt much better when it was taken. The skipped beats now occured at regular intervals, the bottom chambers of my heart were beating at a steady rate (which was much slower than usual for me, and slower than before, but still too fast), and the atrial fibrillation (chaotic quivering) had stopped. I’d been told the trace was fine by the nurse that took it. So I was not expecting the doctor to walk in and say,

“You have second degree heart block.” Well that’s new. Was my initial thought. My second thought was, what the hell is that?

“The top chambers of your heart and the bottom chambers of your heart aren’t talking to each other. Something stops the electrical signals passing from one to the other, so they each do their own thing. In your case, some signals can still get through, but it’s chaotic, and it means your heart can’t pump efficiently or in a coordinated action sometimes.” Explained the nurse. Still had worse, I thought. Heart stuff fails to worry me any more. In fact, learning that it wasn’t my ventricles going haywire (as has been the case before) was a relief.

Third thought, why is it suddenly doing this?

“Well it’s intermittent, but it can be indicative of structural changes, scarring, any number of things.” How about a surgeon poking about inside my heart with wires? “That would do it”

Fourth thought, how do you fix it?

“That’s up to your cardiologist.”

They gave me copies of everything and told me to go to my cardiologist in London. So until Thursday (his next clinic, which the hospital were awesome enough to squeeze me into) I’m left unable to walk across a room without getting breathless, with blood backing up all around my body causing swollen feet and trouble breathing, and an unimaginable fatigue. But I am used to dealing with my heart being an idiot. I learned to deal with it a long time ago. The other stuff that was bringing me to my knees, the other stuff that was making me so unwell and was, I thought, the most immediate problem… That’s still running along in the background. By itself it was enough to leave me bedbound. Thankfully right now it has been overshadowed. Unfortunately, so has every other thought.

I keep trying to revise, to try and focus, but I can’t. Second degree heart block and, apparently, second degree mind block. But it’s good (not the fact that I can’t focus, obviously that’s beyond a pain in the butt), I suddenly feel an overwhelming calm. Is it my brain giving in? No. Is it acceptance? Not in the usual sense, no, but in a different way. Although it’t name changes frequently, my heart issues are a devil I have grown to know well, and I guess I only fear the unknown. (And snakes. Because nope.) It’s nice to have something that a lot of other people have for once instead of something confusing and unique and practically unheard of. Maybe for once I am conventionally unconventional (hopefully the cause of the whole thing is also as conventional and understood as the diagnosis). And I think I like that. Because it sounds an awful lot easier to fix.