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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