Sometimes I’m like the saddest little dormouse curled up inside a teacup.
Instead of a teacup, though, I have my boyfriend’s doona. I curl up inside it, flat on my back and very still, and let my face leak really quietly. Then I talk to the boyfriend in question, because talking really helps.
I find it so difficult explaining how debilitating chronic pain is to people. Hell, it is only lately that I’ve started to own it as a disability myself, so I suppose expecting others to understand is a bit much. I really want to apply the PC words ‘differently abled’ to it, but for me it really does feel like a negative. I’m not sure how anyone could construe chronic pain as in any way positive.
Chronic back pain is common, though people who suffer from it usually experience it from a wide range of sources. According to the Australian Bureau of Statistics, in 2004-2005 around 15.1% of Australians reported recurrent back pain and problems. Back pain can be inherited or acquired.
In my case, it is acquired. In March last year I was in a serious car accident on the Sydney to Newcastle highway. In rainy weather, my partner and I hit a bit of debris and our car plowed at 90km an hour into a rock wall. How we survived the wall or the truck storming purposefully up the highway beside us, I’ll never know.
But survive we did, and I’m grateful. The gift of life came with a tiny little condition for me, though – something I’d never anticipated living with, as a young person.
It was never really established whether it was a whiplash injury or…what. They took scans of my neck, but not my lower back. I got out of the hospital, I napped, I had shocked “oh my god I’m alive” sex and everything was fine. Or so I thought.
A week later, a strange…fizzing sensation set in. A wide buzzing band of heat laid itself out across the space between the back of my hips, sweeping down to above my buttocks. It didn’t hurt at first. It just sort of hummed.
With time, it came to hurt. A lot. At first I was shocked into action – pain was not a part of my life, and was unacceptable! My newfound agony was not to be tolerated. My GP told me to take panadeine forte and see a physiotherapist, and so I did both. My physio was rough with me – my stretches were harsh, and he left deep bruises on the small of my back. I felt a little better afterwards, but sometimes worse. It helped for a couple of months, but then it stopped working.
I drank a lot. I drank and took painkillers. One of the reasons I’m so freakin’ obsessed with the show House is that I can really relate to the protagonists struggle with pain – both real and perceived (they muddy over time, which can be very frustrating) – and with substance abuse. During most of last year, I would resort to alcohol and panadeine and endorphins from sex to push through the big pools of pain I confronted every day. I was all in favour of being in a stupor or blissed out on a crush, or doing anything I could to chase the high that made my pain and other emotional issues depart from any close horizon.
I have found myself wanting to steal Endone from friends that I know have it, but I’m frightened to get a prescription. I know I’d pop it like candy. I want to pop it like candy. Often I wish I coped a little less well so I could admit myself to hospital and have something put in my arm just so I can ignore the motherfucker for a while.
What does it feel like? Like someone is holding the bottom of my spine and twisting. They’re also kind of pinching and pulling at the nerves around that area, up in a big curve to both hips. It feels like something is inside me, giving different sensations – sometimes pounding, always burning, sometimes dragging and dilating the muscles and sinew. But you know, this pain is all the time – not just once every few months, when you cut yourself or stub a toe.
Worse is watching those around you having perfectly mobile bodies. Hearing them complain about their clothing or their phone bill. It makes me homicidal. I’ll swap you for your lovely supple spine. That sounds much more Hannibal than intended.
I often talk to my friends about my pain days on a scale of ‘1 – 10’, as they do in the hospital. You know, one being the least you’ve ever felt and ten being the worst. I’ve felt some pretty bad pain – a near-ruptured eardrum, a miscarriage, intense BDSM play, and a history of self-harm – so my scale is a bit stranger than other people’s might be.
Most days, I live in the sixes. Lately, that has gone right up to a daily eight, as I struggle to cope with a very hard decision I’ve taken.
I’ve decided to stop taking painkillers except in the very worst instances of pain – when I’m riding a nine or ten or just can’t get out of bed without them – and to stop consuming substances to cope. I need to take care of my immune system because it has had a shit of a time with recurring tonsillitis and I need my body to be well for surgery on the little blighters in July.
Also, I’ve read and been told by my doctor that people with chronic pain are more at risk of developing health problems later in life due to painkiller abuse. Consuming so many handfuls of pills and washing it down with red wine is liable to blitz my kidneys and more to the point, my liver.
If that seems unfair to you, trust me, I’m way ahead of you.
So my mission for this year is to somehow cope without chemicals. This is so far not working out well and I hate it. I don’t want to pretend it is easy or that I feel inspired; no, instead I feel dogged, tired, and set on my course. I have one outing approaching at which I will drink, but outside of that it is sobriety for me. My dear friends Katy and Teddy have been very supportive of me, and came over the other night to talk with me over pumpkin soup about what sobriety means for me.
To be honest, I’m absolutely pissing myself. I’m scared I won’t be able to handle the pain. I’m a little under-whelmed by the idea of just…doing this pain thing and having no escape, no place to hide. It also means I can’t mask my pain symptoms anymore, so I’ll have to actually be more active in asking people to make considerations for my disability rather than hiding behind a good brain-bath of codeine.
It means fun things like sitting in the suicide seats at Derby (cold concrete floor with no back support, hmmm), vigorous crazy acrobatic sex, running, jumping, camping, sleeping in unknown beds, being too hot or too cold, having baths in my art deco bathtub, being without back support anywhere at all and definitely, definitely skating – well, they’re either out, or seriously in question.
I’m not ready to totally say goodbye to my beautiful life of full movement without pain just yet. Maybe it is a fantasy on my part, but I’m thinking of seeing an acupuncturist, doing some gentle yoga, and trying to lose some weight to relieve pressure on my spine and supportive joints in my knees and ankles. I have plans to reclaim ground from this evil pain demon. Giving up the booze and painkillers was about that, too.
It sucks to be 27 and hurt all the time, but at least I can walk and talk and write this blog entry.
At least I’m alive to hurt. I hope I never lose my gratitude for that.