“You’ve lost weight! You look great!”
Lately, I get this a lot from people. But inside my body, it’s an entirely different story. I’m in pain, every day, and depending on which doctor I ask, it may stay like this. I could suffer from chronic pain for the rest of my life.
I looked great at the launch of my mockumentary a few months ago, but the truth was, it was hurting just to pick up a glass. Not long after that night I ended up in hospital. My health has been tangle of unanswered questions. I received treatment for an underlying illness but the pain remains.
It hasn’t been easy accepting my pain has become chronic. Initially I was angry at the doctors for all the misdiagnoses and confusion. With no definite answers, I spent hours online trying to find them myself. Maybe I had contributed to getting sick? What if I had done things differently? I began to blame myself. How would I be able to know if my pain would be with me forever without knowing exactly what my diagnosis is? How would I cope? Look after daughter? I was staying with my parents after the hospital and I wondered if I would need to permanently live with them. Would I be able to write, perform theatre? My hands were so weak.
My health has been tangle of unanswered questions. I received treatment for an underlying illness but the pain remains.
Then I went to the other extreme, refusing to accept I would have ongoing chronic pain for the rest of my life, clinging desperately to the hope I would return to full health. I was getting marginally better every day since leaving the hospital, so why would I not get better?
For every few good days came one or two really hard pain days, which made me cry because they knocked me off my ladder of hope. I confided in a friend about my fears and rather than the “you’ll be okay” everyone was telling me, he said something that was a real turning point for me. He said “humans adapt and you’ll adapt”.
I realised the stress of the unknown was feeding my pain. Pain loves stress. It can make a manageable day unbearable. So I let go. I let go of the questions, of the fear and the regret. What’s done is done. This is where I am. I told myself that I need to proceed with my life assuming I would always be like this. I mourned my old health. I mourned dancing at the pub at 2am. I was operating at 50 per cent of what I was pre-sickness both in my energy levels and my mobility. But I wasn’t dying. That, I had to be thankful for. Daily meditation including listening to talks by Buddhist nun Pema Chodron helped immensely, and then something amazing happened: I became lighter.
I continue to get marginally better every day, and when the really bad days come, I accept them with the knowledge that a good one is around the corner. I have had to shuffle things around in my life to be able to physically cope with my new friend ‘chronic pain’, like going to bed early like a granny! Sometimes I am naughty and stay up till midnight watching Netflix and boy do I pay for it the next day. It’s hard being disciplined but sleep is so important when you’re in pain because it allows your body to replenish and heal every night.
Less time is one of the consequences of chronic pain, but this has bought much perspective to my life.
I have had to limit my social commitments. I’ve been able to move back home with my daughter, and even though it’s harder not having my parents help me, it’s great getting my independence back, and my daughter and I work together to get all the chores done. I let all my editors that I freelance for know about my condition and they have all been very understanding and helpful in the managing my workload. Every week I can do a little more. This is important to look at when you are having a hard day, where you were, and how far you’ve come.
Less time is one of the consequences of chronic pain, but this has bought much perspective to my life. I have to be more discerning in where I invest my energy which means I quickly walk away from counterproductive situations where I would usually argue, fight or get sad about. I also appreciate the time I do have, finding the joy in the simpler things like a cup of tea with my daughter, or a hug with mum. For the first time my life I’m putting my health first and this is trickling into my life in a positive way.
I have chronic pain but I am not going to let my pain define me. My pain has bought much perspective to my life and for this I am grateful. But I have not surrendered to my condition. I hold hope that one day my pain will go away but I know the best chance of that happening is by living my life like this.
This week is National Pain Week. Watch cricketer, Michael Clarke, talk about pain and its invisibility.