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. 

22 thoughts on “Just Another Loop

    • Indeed they do, I’m kind of in despair for London right now – where is the tolerance?! Fighting fire with fire won’t work, so why did some dude have to get in a van and run over people who had just finished worshipping? If you don’t know what I’m so sad about, turn on the news 😭

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      • Are you freaking kidding?? I’ve been a little bit hiding from the news because it makes me too sad. Stay safe.

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      • I wish I was. A group of worshippers who had paused to help a man who had collapsed after prayer. Beyond ashamed of the man who did it. I hid from the news for a while because it was too much, but I kind of make myself keep up to date with it now. It feels right to grieve and to keep those affected in my thoughts. But hiding is understandable too! “Warmth” by Bastille says it all kinda

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  1. Hugs and loves. Today is a new day and a chance to write a new chapter of your story. There are bad peoplw in the world, and the best thing we can do is to be out there, present, and alive.

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    • Half an hour ago just found out I’m having urgent heart surgery on Friday and I was so beaten and very unwell and struggling but now I’m on cloud 9. Also, 💩s that think hate is the way will never win, London and Manchester and everywhere else is proof of that. This world is more than they could ever dream it would be and they won’t break it.

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    • YES to all of the above (except I exchanged warm socks for flip flops because it’s an actual normal level of warmth in England right now and as a nation we have no idea how to handle that 😂😂)

      In the car on my way to London. Worried but not scared, which my mum says shows how unwell I must be feeling. Ready for this. Thank you for thinking of me, means a lot. See you on the other side 👍🤞

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  2. Some day I will fly to London to see you. Will bring gifts of love and in the meantime I am sending all positive juju. The universe is on your side. I can only imagine good things for you. I hope the surgery is an astounding success and you are breathing better soon. Hope all good music plays for you.

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  3. Thank you thank you thank you. I’ve been checking every day for you to at least approve comments. ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

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    • Sorry I haven’t been active on here. Came home but am now in hospital in the CCU with a post-op infection and blood pressure that likes to drop to 50 systolic at the most unhelpful of times. But I’ve noticed an improvement and I am determined to help raise money so other people can have the procedure I had and not experience the things I have. I’m making big plans and I’ve never been more determined to see anything through. Thank you for caring, sorry for the worry

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      • I’m so happy there’s improvement ❤️❤️ Kick that infection’s butt. Did you have minimally invasive again or was it open thorax?

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      • The infection seemed to be under control but has now spread slightly which worries me. My chest remained firmly shut thankfully (well, apart from the bit that is infected). The staff here are lovely and seem to think my attitude is pretty impressive which weirds me out

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    • If I told you I spent the last half hour crying too hard to actually function would that give you some indication of how things are going? The infection refuses to leave and seems to be getting worse again.

      I just can’t even right now. I’m so drained and mentally and emotionally exhausted and just… unravelling

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    • My heart is being kept in line by a pacemaker (most of the time, sometimes it does its own thing just to remind me it’s a poop and that feels horrible). It’s more my head right now. I’m breaking

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