Living up here in the Blue Mountains — a few hours from Sydney — is like living in the clouds.
Even in summer they seem to rise up from the Jamison Valley just beyond the edge of our homemade physic garden. The yellow flowers of the ornamental ginger lilies are just visible through the evening mist. At two metres tall, they appear like torches in the twilight.
Growing next to them are rows of edible ginger in pots.
I often think about ginger these days — it's in my handbook of medicinal plants. Ginger: anti-inflammatory, a treatment for arthritis.
Six months ago I did not pay much attention to plants and their healing properties.
That was before my knees buckled, and I fell off a ladder while painting the house. Now my knees hurt intensely and "crack" with crepitus when I move.
It feels like I have just fallen flat on my knees on concrete, and I often have the feeling of being stung by nettles, apart from when I sleep.
'Your pain is not helping us'
Pain is complicated. It's hard to describe how much pain you are in. It is even harder to explain to a medical specialist, most of whom measure pain on a scale from one to ten in terms of its intensity, in relation to the worst pain you have ever felt.
But I don't find assigning numbers really helps very much. I find feelings and language far more effective.
"Your pain is not helping us," the GP told me.
She was the fifth doctor I had seen who did not know really what to do with me. She sent me to a physiotherapist.
She was right, though, about pain. It was not helping. She was referring to how I was becoming "pain avoidant", not wanting to walk far, tentative in moving.
I have arthritis caused by what is colloquially known as "runner's knee". In medical language — my patella, or kneecap, is mal-tracking, or not moving properly in the groove of the femur bone. Instead, my kneecap is pulled slightly sideways and too close to the femur, causing arthritis over many years.
"The pulley-systems in your legs are not working properly," is how one doctor explained it.
It made it sound like I have an engineering problem in my legs.
The early signs or osteoarthritis can be subtle for knees — "shin-splints" or bruised shins, foot cramps, occasional "cracking" knees, some imbalance or a feeling of rocking from side to side, and not wanting to sit for long periods of time.
Chronic pain, or pain that sticks around for longer than three months, is also believed to affect one in five Australians.
Just 'very bad luck'
Several doctors asked me if I played a lot of soccer, including the hospital doctor who was ordering some X-rays and magnetic resonance imaging (MRIs) of my bones and joints.
These comments made me chuckle. If I was to suffer this pain, it would be nice to have athletic legs like David Beckham.
"It's very bad luck at your age," the doctor said to me.
Truth is, soccer or football had never been for me. But, having never owned a car, I walked a lot. I loved bushwalking, and Zumba too.
She warned surgery would not solve the problem, corticosteroid injections would wear away more cartilage, and most painkillers would do little good and possibly cause harm.
After two months of very expensive specialist appointments, scans and wasted time I began to feel like nothing worked.
It was hard to accept.
I had worked as a health journalist for 15 years. I know what medicine has done for so many people because I write about it all the time — vaccines, stem cell treatments, preventative health, surgery and anti-viral drugs. Medicine has solutions, right?
But it was failing me. It often has little to offer those who live with chronic pain.
"You are becoming very anxious. That will make your pain worse. Pain is not in your knees but in your mind," the hospital doctor said.
Research from Arthritis Australia shows up to two thirds of people with arthritis say their condition has affected them emotionally.
Many are frightened by the impact arthritis might have on their everyday life and their future. People living with persistent pain are four times more likely to experience depression or anxiety than people living without it. As a result Arthritis Australia encourages sufferers to join groups, find support networks with other sufferers and spend more time outdoors to feel better — everything from gardening to birdwatching.
Meanwhile I was becoming increasingly worried about my future — with few solutions from the medical profession, and most practitioners in it saying my worrying was causing the pain.
It seemed to me it was easier for them to blame the patient than to admit their field has far to go yet to help those with chronic pain.
A new way to live
But new research is changing the way we think about chronic pain, with some finding chronic pain actually changes the way you feel pain and that it is not because of your personality.
I know chronic pain has changed me. It's changed the way I think and the way I live.
Many older people say that as they age their emotions narrow, they can feel fewer types of emotion at once. I think chronic pain makes you like that too. It takes up so much of your focus. I feel that I can only concentrate on one task at a time for trying not to think too much about pain.
I walk very slowly these days. But it means more people now stop to chat with me, and many tell me their own stories of chronic pain.
Pain has also changed my expectations. I was grieving for my late mother around the time my arthritis was diagnosed, when I fell from the ladder at home.
I had been planning to walk a great distance to get through the grief. I loved walking and like so many people, I wanted to get out into nature and really test myself. I had bought brochures to much-trekked places of pilgrimage — the Himalayas and Spain, like the famous Camino de Santiago track. Now my pretty useless knees means it is not to be.
For three weeks I lay in bed, missing walking and realising I needed to change my expectations. I also had plenty of time to reflect that I was not alone. So many people are going through what I am.
But I don't need to trek to Spain or the Himalayas to feel better. Life was actually much closer by, just in the garden.
Indeed, new worlds were preparing to bloom just outside my window.
Treating chronic pain more holistically
I have found Western medicine generally poor at controlling chronic pain. I believe it needs to look far more closely to how the mind and body interact — with smarter pain relief and medication, preventative health and support with evidence-based complementary therapies.
Promisingly, treating patients more holistically is becoming more popular in some medical schools.
Now I am working in the garden in the Blue Mountains, tending those ginger lilies, as well as rose-hip and medicinal plants, and enjoying getting to know other gardeners who come to chat in the fresh air.
My medicinal plant book tells me that the ginger lilies are originally from the Himalayas. So, I didn't have to trek there after all. A plant from that far-off place is growing right outside my window.
Most of all, I have come to realise that community and friendship may be better than what medicine can offer me right now.
And it kind of works. A bit.
