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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10 thoughts on “Where I’m At

  1. Oh, London Blogger Friend, you have no idea how much it cheers me to hear from you! I can only imagine how amazing it must feel to be able to do something as simple as walk AND talk! I do hope Pedro is able to keep Skippy in line.

    I know you still must be very scared. That’s entirely ok and entirely normal, especially when you don’t know what will happen next. But if something’s going to go sideways, you’re in the best place for it to happen.

    I am so glad that you are able to take something positive from this by wanting to help others. For me, I started my blog for the same reason. I had been through a lot of stuff, being diagnosed with multiple conditions that are chronic and incurable, as well as life-altering. I wanted people to know that there is hope to be able to live a somewhat normal life and they’re not alone in their fight.

    So just breathe. Take a deep breath. Let the tears fall. Grieve for the hopelessness you feel in the moment, but remember it’s only temporary; it’s just a blip. With every second, you are moving forward. Your body is healing.

    Put on Pompeii. No way but through…and no day but today. ❤️

    Liked by 1 person

    • After hearing about the state I was in my consultant appeared this afternoon to see me. I think it was his day off because he was dressed like a normal human instead of a super smart doctor (also… I was told he’s not working today). Talking to him helped me a lot, to have a clear plan and to know where things are at. Unfortunately it’s just a waiting game. As soon as this can all be managed at home it will be, but that time isn’t here yet.

      I’m a little too broken to properly respond to this right now, but thank you for your words and for taking the time to write them.

      Liked by 1 person

      • I’m glad your consultant was able to stop by and see you. Sometimes having a plan of action is all it takes to help you feel better about things. I’ve been in a bit of a state emotionally over my POTS lately because I’ve been sailing along feeling like trash, without a plan since January. But I see a specialist this Wednesday after waiting for six months! I know things will be better after that.

        Take your time, love. Focus on you right now. 🙂

        Liked by 1 person

  2. So glad to see your words have found you again. can’t tell you anything you don’t know, but I do know that you’re stronger than you feel. This fact always amazed and amused me: for 2 weeks after general anesthesia your IQ is measurably lower.

    Do they think that you’ll be able to run or swim going forward??

    Liked by 1 person

    • The IQ thing explains a LOT 😂 I can confirm it’s pretty accurate 😂 Might be having one of the wounds re-opened on Wednesday which will be about as fun as it sounds

      Hopefully I’ll be able to start to exercise again. Skippy shouldn’t have any tantrums and should be way less tired so this should work. I’m planning big big things but I can’t share just yet. A friend I met at the Bastille gig that broke my heart (pretty literally) is currently on a train on her way from Manchester to London to see me for a few days and I am so excited to see her again! We’ve been talking so much and she’s travelling such a long way!

      Like

  3. hi its lovely to meet you i just came across your blog. i hope your heart will heal up quickly. it is hard when you are so ill so much of the time. music is powerful i agree. i’m glad you have that. thinking of you and sending support. xo

    Liked by 1 person

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