Sunday, 28 June 2015

Going, Going, Crohn

Sometimes I forget myself and get often overwhelmingly and uncharacteristically angry at my predicament. This mainly happens when either I am desperately ill, or someone I care about is in the same, or a similar situation, and I'm helpless to make them feel better. I get angry because good, kind and wonderful people have to suffer, fight and often lose battles, against horrific diseases every day. They struggle on a daily basis against the indignities illnesses impose upon them, the conditions that strip away pieces of them little by little until they are a shell of their former selves. It breaks my heart then makes me rage.

I don't really have a right to feel any self-pity as I'm alive.

Like Elton John before me, I'm still standing despite my condition and wobbly though I may be, I am still well enough to live, breathe, pet cats and listen to Beyoncé on repeat. Some people aren't so lucky. But yet I manage to feel anger at my own situation quite often. I wish I didn't. My Catholic upbringing ensures I feel almost instant and unbearable guilt at my selfishness of course, yet sometimes I still feel a bubbling rage at the hand I've been dealt. I feel fury for the people who have lost their lives after battling illness and worry for those still around; how do we move on from losing you? Why are we ok and you're not? Like any grief it is a long and arduous process to locate some sort of comfort in amongst a verifiable banquet of misery.

I've known and developed friendships with people since my diagnosis who have passed away. Some from complications due to their IBD and some for other health related reasons. I am ashamed to admit that in amongst the grief I've panicked to think what this must mean for me. Am I next? At first I didn't understand how it was even possible life could be taken so quickly, the mere idea of it being snuffed out before you are old enough to jump Post Office queues or insult people in public without embarrassment, is utterly terrifying to me. I could be taken into hospital one day and never come out. It doesn't bear thinking about. But it is thought about, regularly. With every procedure, every medication, every form you have to fill in that has POSSIBLE DEATH in the small print. It’s an inescapable worry.

When I had my first surgery I remember vividly waiting to be wheeled into the operating theatre and thinking about all the things I should have said to my Mum, my partner, everyone. Then discounting it all in an instant because I had to force myself to believe I’d wake up.  But why should I be so lucky when others haven’t? It’s a strange feeling; shame at living. It’s an aspect of living with chronic illness I’d never expected and am not sure how to deal with.  With each loss it feels as though time is running out. Like most fears it’s not bound in reality. It’s inbred from stories and experience and often leaves as quickly as it comes. The feelings of loss don’t just come from the physical loss of another human; a friend or relative, a fellow patient in the bed next door; they also come from the day-to-day loss you feel at what has been taken away from you. The things you can’t do and the activities you've had to sacrifice. Those ways in which you've become someone who needs to be cared for.

It's easy to feel positive when things are good. Not so much when you feel bombarded with misery and bad news. With chronic illness, life is like walking a tightrope. There’s a relentless and persistent fear that if you put a foot wrong you'll lose everything you've worked for. You just have to keep on trucking and take care of yourself and those around you. If I've learnt anything from Jerry Springer, and that’s where most of my moral lessons in life have come from; it’s to take care of yourselves and each other. 

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