i carry your heart with me.

New Post: She Will Be Loved by Maroon 5 (look for the girl with the broken smile, ask her if she wants to stay a while)

So I went to the hospital for a checkup today. My heart condition got worse.

There was a time a few years back when I was just using my pacemaker about 5% of the time...which is really nothing. The doctors weren't so optimistic but mum and I were really hoping that eventually I wouldn't need a pacemaker anymore, and that my heart muscle had gotten strong enough to stand on its own.

The main reason why I started losing weight this year was because I know I have a heart condition and I really want to not burden my already weak body and just make myself fitter - excess weight does contribute to death during surgeries and slows down post-op recovery. That's why it hurt so much when people told me I was being a bad woman and a bad feminist and buckling under pressure by losing weight. I have spent so long fighting low self esteem and body image issues and trying to help other people work through these things, that to be judged like that just for doing something proactive about my health was...unbelievable. I did it so that I could go under anaesthetic again and again, because I have to, and have a better chance at waking up at the end.

But despite my efforts, my pacemaker now paces my heart 30% of the time - which is, you know, quite a lot compared to 5%. I guess it's an understatement to say that it's a little disheartening...the worst part about my medical condition is that I have no control over it. I feel like I can't control my body and what it does to me.

Lately my pacemaker has been hurting - a lot, and quite often. When these pains first started when I was eleven - when I was eleven they were horrific, I remember staggering into my parent's bedroom before collapsing on their bed and just screaming in terror - they wouldn't react to any painkillers; they gave me stronger and stronger painkillers and I got more and more...stoned...and the pains weren't going away. The only thing that really helps is heat, so I now carry my little wheat bag around with me all the time, but it doesn't always help and it hardly ever takes away 100% of the discomfort. Sometimes I just have to deal with it.

I know people think I'm just overreacting...and to be honest, that thought hurts more than any crap my pacemaker could throw at me. I have a very low pain threshold and sometimes it just really, really, really hurts. I would never use pain to be attention seeking or anything else people say behind my back. I'm sorry if I disrupt your fucking epiphany when I cry out. Actually, no, I'm not. Go through open heart surgery for me and live with scars for the rest of your life and then I might feel a little sorry for you.

I get so stressed out by bullying and social dynamics and just how people treat me and it's really having an impact on my heart condition - when I'm stressed it hurts more, and I have more hospital scares. Sure, it's fun to pick on the nerd (especially the nerd who's getting chatty with Darth Vader) but seriously...the more people wind me up the more my pacemaker hurts. If I end up back in hospital again I am entirely blaming you and the way that you fuck with my mind. Since relapsing back into depression and crying a bit more...my frame of mind isn't really helping my physical health. I wish there was a way to tell people to just lay off a bit, that I'm not well and I just really need some time out, just a little compassion, just a little space to make a few human mistakes. I wish I could try and make people understand that my heart condition is really getting to me and it doesn't take much to push me over the edge.

So what helps? Staying positive. It sounds corny but when you're me you'll give anything a shot, and it really helps. My sense of humour and the things that make me happy have become very...pedantic and whimsical, but I'll laugh at a fossilized koala if that's what it takes to make me feel good. Heat packs help, especially when my sweet friends warm them up for me so I don't have to limp to the common room. Hugs...hugs are a big thing for me. I don't know if it's the warmth or the comfort or the intimacy or just the pheremonal hormonally jazz...but I've been hugging boys, girls, trees, dogs, ants...anything. And getting through one day, just one day, without a rumour or a fight or a tantrum or someone saying something horrible to my face...I get a weird kind of buzz. Remembering that no matter how horrible I feel or how much pain I'm in other people have it so much worse and that I have to find the strength to just battle on no matter what.

This is not something I would wish on anyone. It doesn't matter how badly people hurt me or how much this hurts, I would never want anyone else to go through this, and I wish nobody else had to go through this or worse, ever again.

This was my last appointment at Princess Margaret Hospital, because they've moved my file to Royal Perth Hospital where my cardiologist runs a clinic for adults with congenital heart problems. It's a scary leap and it's made me think about...my heart condition is genetic. I would not wish this pain, these surgeries, the scars on anyone, not even the people who bully me recklessly and don't show me a scrap of sympathy. The idea of giving this condition, even though it is manageable and not in any way an impediment on normal life and normal dreams...to give this condition to my own flesh and blood, to a child I will love more than life itself...it is not a pleasant thought.