Sue Hines on her lived experience
For 35 years, I sat at a desk for many hours each working day. Until one morning in 2013.
My husband left for his job in the city, as usual. I woke with a slight twinge in my back and some stiffness, but nothing out of the ordinary. I worked long hours at a stressful job, I did no exercise, I was overweight, but I had reached an age where strange twinges, aches and pains are a common occurrence.
By the time I was out of the shower it was quite painful to move.
I worked in a three story building with no lift, and I doubted that I could walk up the stairs to my office on the top floor, so I called in sick and went back to bed..
Every attempt I made to stand was painful. The kind of pain that you can’t just push through. I couldn’t get out of bed. Thank goodness I still had my phone. At 2pm, 6 hours later, I rang my husband.
‘I don’t want to frighten you,’ I said, ‘but something has happened to my back. I need you to come home and help me get to the bathroom!’ I was scared.
For the next two days I couldn’t move without enormous difficulty. I couldn’t drive a car. I couldn’t walk up a step. Or down a step for that matter. Even turning over in bed was excruciatingly painful.
My husband got me to a local physiotherapist who helped me back on my feet within three or four days. I had osteoarthritis in my lower spine, the physiotherapist said, and gave me exercises which I scrupulously carried out. He also said I should do pool-based pilates classes. The classes were in business hours. But I was busy, I regularly worked from 8.30am to 7pm. I told myself that I didn’t have time to do the things that needed to be done.
Until the next time it happened. And the next time, and the time after that.
Three or four times a year I would find myself in the same predicament. I learnt to recognise the symptoms of the approaching disaster. And so it went on.
The less I did the less I was able to do. I became risk-averse and cautious about moving. I didn't try to lift things. Even simple tasks like doing up my shoes became progressively harder.
But physiotherapy kept me moving.
Eventually, I went to a specialist, who ordered a CT scan. And the scans confirmed what we both knew. The specialist prescribed Naproxen twice a day. But he also said something that has stayed with me.
“This will only get worse,” he said. “The episodes will get closer and closer together. If you want to keep being able to walk you have to take responsibility for your own mobility. If you don’t you will end up needing a walking stick, then a motorised scooter and a walking frame. You will eventually have very limited mobility. These are the things in your future. Here is my advice - enrol in a Clinical Pilates Class with a practitioner who knows about pain.”
The idea of being disabled in this way filled me with terror. But did I take his advice? I lived in fear of the future that awaited me but at some level I felt that, despite all evidence to the contrary, this kind of impairment would not happen to me.
I made slight changes to my behaviour. I walked more. I learned to love the three storey staircase in my office. I didn’t sit for more than a hour without moving around, I got a very expensive desk chair, I stood up in meetings when everyone else was sitting, I tried to de-stress, and I had regular physiotherapy sessions. As time went on I just learned to live with the painful condition. I hated taking regular medication, but Naproxen enabled me to keep going.
But not forever.
Two and a half years later I retired from the job I had loved for 35 years. We sold our Sydney house and moved to Phillip Island. And the first thing I did was find a physiotherapist. And finally, finally, I enrolled in a clinical pilates class and learned about my pain!
And that was the turning point.
Being overweight, and unfit, I was afraid that I would not be able to do the exercises. I had damaged knees. I couldn’t comfortably kneel and even the most basic movements like walking up stairs would produce painful, grinding, bone cracking noises in my knees. The new physiotherapist suggested that I buy a set of knee braces to help me start the pilates classes. And start them I did - in May 2017.
At first just once a week, in a class of four people, with a program tailored to my requirements. Within six months I no longer needed the knee braces.
I was gradually growing stronger, I could bend and move with greater ease, my balance improved immensely and I gained confidence. It was slow but my progress was measurable, and I felt healthier. Over time, I have learned to do more and more challenging exercises.
We are not talking miracles here and I am not completely pain free. But I no longer fear the pain and I don’t anticipate it either. I have become more aware of my body’s responses.
Armed with my new found confidence from pilates and learning about my pain, I joined the local YMCA. Covid kiboshed my gym attendance so I enrolled in two clinical pilates classes per week.
It has been 5 years since I retired and I have not had a single episode of disabling back pain. And as a side benefit my knees are no longer painful, inflamed and weak. I have built muscles, I have more core body strength, I have better balance. Exercise has helped me manage the pain and minimise it. I no longer get ambushed by my own pain. My body has become my friend not my enemy.
The clinical pilates classes gave me guidance, confidence and support, a program to follow, and a regular way to measure my progress.
I still have back pain some days, my knees still creak, but I can get myself up off the floor. I am never going to run a marathon. In fact I am probably never going to run anywhere!
I get stiff and sore if I sit for too long, or stand or walk for too long. But I don’t panic. I have learned simple stretches and exercises that alleviate the pain. I think about pain differently. I understand pain is a bodily response and when it happens I stop doing whatever it is that is causing the pain. And I still take the anti-inflammatory drug.
And I will forever be grateful for the kindness and skills of the physiotherapists who helped me take responsibility for my own wellbeing. I couldn’t have got to this point without them. I can’t see a future that doesn’t include them.
Sue Hines
Lived Experience Advocate Presenter Rural Outreach Tour in 2019
