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?


24 thoughts on “I Realise Now

  1. As someone currently on beta blockers because of low blood pressure and tachycardia, low blood pressure can totally be managed! I have no doubt your doctors will find a solution for that. I’m so so so glad everything else went well!

    Liked by 1 person

    • Unfortunately after my heart has been fiddled with this is not low blood pressure in a normal sense, it’s low blood pressure due to my heart not being able to co-ordinate its heart beat in a normal rhythm – as the area where a heartbeat should originate from is destroyed so a different area is trying to compensate (rather than not having enough blood volume or my heart not pumping hard enough or beating too fast to allow itself time to fill) and unless something changes I will need another pacemaker, but that can’t happen until the infection clears so I’ll be left unable to walk and do anything and will be back to using a wheelchair at least for a little while. That’s their solution. We wait. Will explain more in a post later when I get home. My blood pressure isn’t consistently low, sometimes my atria contract before my ventricles and I have almost normal blood pressure, a lot of the time my heart beats in reverse (so the bottom part contracts first) and my blood pressure drops to 45-50 systolic for minutes to hours or however long my heart is confused for. Because half my heart is always being told to beat in reverse, I have constant palpitations and am very tired. This part of my heart also isn’t coordinating a regular heart rate so Skippy is back to missing beats and jumping from 52 to 70 to 90 to 55 beats per minute every few seconds which makes me feel pretty lousy. It’s a shame because I felt so normal and well with a pacemaker. Skippy is basically shouting SOS. I think I preferred the complications. Nobody really knows how Skippy is going to behave without a pacemaker, but so far he is surprising us all with how well he’s got on.

      Liked by 1 person

    • Also I’m so glad that something helps manage your situation even if only a little. It’s actually reassuring to hear someone find something that works (I assume it does, if not… I’m sorry instead of glad)

      Gone are the days of my tachycardia – my AV node (new part taking control of my heartbeat) paces the heart rate much slower. It’s unusual for it to set a heart rate above 40-50bpm but Skippy is adapting like a PRO.

      Liked by 1 person

  2. Oh Skippy, thanks for stepping up to the plate. I can’t believe that the pacemaker got infected 😭😭 what a crappy outcome. Fingers crossed that either Skippy perfects the rhythm or they can minimally invasively out a pacemaker back in now that no ablation is needed at the same time

    Are there external pacemakers?

    Liked by 1 person

    • Skippy has stepped up to keep me alive but not enough to make me feel well. I’m back to not being able to lay flat at points and other annoying stuff that I can’t go back to uni with. Feels like I’m losing it all again.

      The external ones hurt a lot so are only used in emergencies or with sedation. Hopefully I won’t need another – I’d really like that. I just want to feel well really. I’d forgotten what it was like and I hoped to enjoy it for a little longer than I got to. It was a break at least, and I needed that.


  3. Ok firefly, I’m now looking up obituaries for someone whose name I don’t even know. Check in – even by just approving a comment.


    • FYI obituaries totally aren’t my family’s kind of thing. Checking in or having anything to do with blogging is far, far from my list of priorities most of the time, so when I don’t respond it usually means I’m going through some stuff, and that I don’t want to share that because my focus is on not breaking. I’m going through a lot mentally, I am very unwell physically, and I’m in Thailand spending time with family I see once every few years. Don’t celebrate the fact that I’m in Thailand, please. Most people see only huge positives there, but they don’t know everything, clearly don’t understand, and I don’t want to explain, which is partly also why I haven’t posted.

      You gotta give me more than 24 hours to respond to a comment before you decide I’m dead, especially when you think I’m on holiday 😂. I appreciate the concern, and that you’re still reading. There’s not going to be anything here for a little while. I don’t even want to check up on this thing at the moment. Need space from it.


      • Thanks for checking in ❤️ Worrying is one of my superpowers. Hope you can find some peace in the change of scenery.


      • You’re awesome. Thank you a lot for this. It’s a pretty perfect response and I didn’t realise I needed to read something like this. I have nothing not to write about at the moment (everything is kind of too personal or just things I don’t want to remember, like the physical state I am currently in) and I am kind of questioning why I write at all, but maybe that will change


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