I Realise Now

On Thursday night I had no idea how to face the minor surgery I was about to have, but reached a point where emotion surrendered to logic and the rest of me surrendered to defeat. I lost myself in the sound of my favourite music, and hoped it would hold “the feels” at bay until I was beyond the point of no return. This plan worked. I sat outside the room full of lights and equipment (and people) in which I was about to have a wound in my chest sliced back open, and it was only then that I again to tremble – maybe with fear, maybe because I was freezing, probably a bit of both. 

The team were lovely, as was the consultant carrying out the procedure who to my surprise despite being the clinical director was not above wheeling a bed. And then I was away with the fairies. Pedro the pacemaker was infected, and also I was a little allergic to him (my immune system pretty much just hated his presence, not that it ever really brought out the big guns and saved my butt). He was removed, along with the (also infected) wire leading into Skippy (my heart) via which the sensible robot and the rebellious organ communicated. It couldn’t have waited. It wouldn’t have got better and neither would I. It saved my heart. 

And then Skippy saved himself. The part of a heart that usually tells it to beat is dead and gone in Skippy – too damaged by the colleague of the consultant who carried out this procedure to function again. So, obviously, Skippy had needed Pedro. But Skippy had also decided that Pedro was a control freak and he refused to listen. There had been teething problems as the two of them fought and Skippy won. Without Pedro pacing over the top of a rhythm which Skippy has not yet worked out how to co-ordinate with my blood pressure, my heart rate still stayed within a normal range (even though my blood pressure has not). They had expected to have to need temporary pacing or something to achieve this (and then wait 10-14 days and take me back to put in another Pedro), but Skippy held his own. 

How? For those of you who know about the anatomy of a heart, my AV node is a BOSS and has stepped up to the job. For those of you who have no idea what that means: another part of my heart has started telling it to beat – not normally its job, but something it is sometimes capable of when the heart is forced to adapt. The resulting rhythm is called a junctional rhythm. Because the heart beat starts from lower down in the heart than it normally should, the impulse that triggers contraction travels backwards through the top half of my heart. This means that a tiny part of my ECG trace will forever be upside down, and that sometimes my ventricles beat before my atria, which makes my blood pressure drop because that isn’t supposed to happen. 

I’m pretty unwell with it – I’m tired and my blood pressure is low, plus I have very frequent palpitations. They put out a crash call earlier because a nursing assistant and I went to meet the consultant who saved my heart’s butt (he wanted me to try and walk and see what happened, and to encourage me gave me a goal of meeting him by the fountain – but there was an emergency so he was busy giving someone else a pacemaker) and on the way back Skippy got confused as to how to maintain my blood pressure and I passed out. I’d been dizzy the entire time I was walking, but hadn’t expected to hit the floor. I was mortified, and soooo many people appeared from everywhere to scrape me up off the floor. My PICC line was unimpressed at being pulled and appeared to have split, and I was frightened it meant I’d have to stay longer and also totally beaten, so I cried. I wanted to go. 

We hope Skippy will stabilise and that this will stop happening, but there is a chance that my AV node may remember that this isn’t its job, get sick of being criticised all the time, and demote itself to its previous position of just passing on the message when something else tells my heart to beat. If that happens, I’ll need another Pedro (when I was high, I made the consultant bring Pedro 1 back to the ward with me in his pocket so I could take a photo before he was last destroyed as infectious waste). 

Apparently while I was high I also said some very nice things about this hospital and told them about my grand plan to raise money for charity (which you don’t know about yet but has since been greatly encouraged by the consultant who removed Pedro). I said many more really weird things, promised everyone chocolates (I did deliver on this promise) and apparently came back to the ward absolutely fascinated by my left hand. 

I guess I’m struggling with the fact that I felt so much more well before Pedro was removed, and that this junctional rhythm kind of has me on my knees. I don’t think my body was anywhere near prepared to deal with a heart rate of 52-54, and when I try to walk around while my heart is at that speed everything goes black. When it’s around 70 or faster (which is probably 50% of the time), it feels like Skippy is a galloping horse because the rest of me isn’t quite used to a junctional rhythm. But the consultant who took Pedro out is hopeful that this is a manageable situation and reluctant to put in anew pacemaker. It could take a few months to stabilise, or it could get worse, but the amazing news is that he’s so hopeful about the situation that we are taking me off all of the IVs tomorrow and they are finally letting me home (they were pretty insistent about one more night and asked me to please not run off – last night I was so desperate I looked up local places to stay within my budget and only didn’t leave because I couldn’t walk). 

This means I can fly to Thailand with my family on Saturday to meet my baby cousin again and see my uncle and aunt and their other children and my granddad. IT ALSO MEANS I GET TO SEE MY DOG. Labrador cuddles will heal all.

I hope sometime soon I feel as well as I did when Pedro was in charge. No more surgeries. No more admissions. I have made the decision that I cannot deal with this emotionally any more and that it is kinder to my mind to let nature do whatever it wishes should things get worse again – it’ll win in the end anyway and I cannot find any way to justify putting myself through this again. It has pushed me to places within myself that made me long for death, cry for it, and cry because I didn’t really want to die, just to escape the situation. This has been so mentally traumatic that I know after I leave it’ll be a long time before I voluntarily admit myself to hospital or enter a hospital ward (at least while conscious). Fear is a dominating thing and mine has been reinforced. I always react to the biggest fear, and right now my fear of being here is greater than my fear of what may happen if I am not. It will take a long time for those tables to turn. 

I have faith in the consultant who took out Pedro, and he has a lot of experience. I have raised my concerns multiple times and he has assured me that this situation is not concerning from a numbers point of view. If anything goes wrong, it’s on their heads, not mine. I’ve questioned, I’ve pointed out, and every part of me hopes these guys are right.

If they aren’t, I hope Skippy at least has the decency to completely stop next time. It’d be kinder. If I was a dog someone would already have helped him along on his way to stopping. 

I felt so well and now there are so many positives but I pass out when I walk around. It feels like two steps forward, one step back. But it’s still the right direction. 

I am beyond caring what happens. I cannot care because if I do I’ll immediately cry. Everyone here says I look so much happier, and it’s simply because I cannot let myself feel anything. The absence of my overwhelming despair is mistaken for happiness. It just means I am hollow, so broken I cannot hold any emotion, so fragile I cannot withstand its weight. I hope it works out, of course I do. But I’m not afraid to die. As long as the awfulness ends… I’ll take it. I can’t do this any more. And if the awfulness isn’t awful enough to kill me, I don’t let it put me in a hospital. 

I react to the biggest fear.

And I’m no longer afraid to die.

This is going to be… a car crash. 

What is the point? It all goes belly up in the end so why not dance in the flames? Feeling like this honestly what is the point? I’ll dance until these flames take all I have. I realise now that there’s no hope – nobody will ever get me back to how I felt with Pedro present. This fire isn’t big enough to warrant the attention of the fire brigade or the use of a fire engine and yet it hurts and… I… I have to throw myself into it and embrace it because it’s part of me now. This unpleasantness is fuelled by my body, comes from within it, and it won’t stop until my body does. I know that now. I know. 

I’ve accepted that fact but… I don’t know how to face it. I am already more ash than human. I feel like one of those charred corpses left after Pompeii.

Trust the fire not the fire brigade” – Nihils, Help Our Souls



Please get a grip Skippy, there’s no more anyone will or can do for you right now. I took you to a Bastille gig. How did we end up here?

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One Thing Too Many

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

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

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

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

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

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

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

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

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

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

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

Not even sure why I shared this, but hey.