Stories about pain
When Symantha Perkin's husband, swimming great Kieran Perkins, won 1500m freestyle gold against the odds at the 1996 Atlanta Olympics, she was in the grip of a terrible migraine. As the world watched, she had to fight back the
had to fight the regular horrendous pain but also "the feeling that I was a terrible wife, a failure as a mother and a worthless person".
In 1962 at the age of 21, Renée was involved in a serious car accident that kept her in an English hospital - in a 40-bed geriatric ward - for nearly two years.
Regulations meant she was unable to see her baby son as she recovered from major surgery following which she was treated with morphine and later aspirin coupled with barbiturates to help her sleep.
Danielle Boydle (Vic)
Danielle was nine when she hurt her leg playing sport. She had been to several health professionals and her leg was "cold, hairy and blue" when she was finally diagnosed with reflex sympathetic dystrophy. A lumbar sympathetic nerve block which instantly helped.
She tells how difficult it is for a child to experience chronic pain and to be on crutches for 12 months.
Jill Kowalewski (NSW)
Each day was agony for Jill after she had surgery for breast cancer. No one could tell her why she felt like she had barbed wire tightly wound around her chest. Even her oncologist described what she was feeling as bizarre.
One morning, six months after surgery and two months after finishing chemotherapy, Jill heard a woman being interviewed on radio who described exactly the pain she was feeling. She made herself an appointment at a pain management clinic and has gradually improved to the point where she can control her pain without medication.
Mandy Sedgewick (Vic)
Mandy's problems started in the early 1980s with the introduction of computers into her workplace.
In 1986, she used to hold the phone under her chin (wearing headsets was not an option) so she could use her hands to type. This set off a chain of events that led to many years' battling chronic pain.
Dave Adamthwaite (Qld)
Dave Adamthwaite is a surgeon who had "survived the traumas of a major motor car accident, the ignominity of a prostatectomy, and the despair and exasperation of three separate cancers and their harsh therapies".
But nothing prepared him for dealing with chronic pain, which he describes as greatest challenge of his life.
Janet Galer
Janet was walking with a friend in London on a bright, sunny day when a tree fell on her, breaking vertebrae in her back, ribs and puncturing a lung. A few days later she had titanium rods and screws inserted in her back. This was the beginning of three years of chronic pain.
She eventually came to the conclusion that she must "reinvent" herself - to give herself more time to do things or to get places, to leave dishes to soak so she doesn't have to scrub, to pace her housework, to use a trolley for her shopping and to travel off-peak because, as she looks healthy, no one stands to give her a seat.
Gerard McEwan (SA)
A coughing attack was enough to trigger neck pain that has dogged Gerard for years.
Initially it was thought he had a heart problem but eventually it eventuated that he had a herniated disc that causes severe pain in his neck, shoulders and upper arm as well as tingling in his fingers.
Gerard considers himself fortunate that he has a mindset and circle of acquaintances that enables him to search out information and navigate bureaucracies.
Katia Lenzi
Katia was an active nine-year-old when a hurdling accident left her with damaged ligaments in her left leg. After a year of treatment her leg hadn’t healed – in fact the pain had worsened.
The constant pain inhibited her from simple things like being able to play and she had to give up basketball, tennis and squad swimming. Unable to socialise, she felt she lost her adolescence and developed a sense of isolation. "I truly felt alone and as though nobody could understand my situation".
Deb Gates
Deb already had a sore back when in 1988 she was reaching under a bed and a sharp object cut her finger. Pulling back "into herself" she found that she couldn't get up off the floor and had to be taken to hospital in an ambulance.
Spinal surgery resulted in "pins and needles" in her leg which eventually spread. She lost all fitness, couldn’t sleep, couldn’t do most basic household chores, gave up leisure activities such as bowling, camping and going out with friends and could no longer drive a car. "I think the main effect of being in constant pain was isolation and depression."
Peter Gregory (WA)
It is little wonder that Peter's back gives him so much pain. At three years old he was in a car accident, at five and a half he was slammed on the ground when a bolt of lightning went through him and soon after he left school and started work, the truck he was sitting in at traffic lights was rammed from behind by a bus.
Peter has been trying for years to get into a pain clinic but living in rural Western Australia with responsibility for his four children has made this very difficult.
Marie Kelly
Marie started getting migraines several years after recovering from two major cycling accidents in the 1980s that resulted in a spinal fracture and severe whiplash.
By 1996, the migraines had become a daily occurence and despite trying several treatment approaches nothing worked until Marie visited a pain clinic at the Royal North Shore Hospital in Sydney.
The implantation of electrodes and participating in a pain management program have helped but Marie is still learning to live with pain.
Denise Stanford (Vic)
The source of Denise's "deep within the bone" pain stems from having had polio as a child.
A wife and mother of two boys she also managed to have a nursing career, do primary school teaching, a master's degree in counselling and was helping to pioneer the role of primary school chaplain in Victoria when the pain, fatigue and loss of condition forced her to stop working.
She says she knows too many highly educated and talented people who must cease or curtail their contribution to society because of pain.
Trevor Gerrand (Qld)
It was not until Trevor accepted he would have chronic pain for the rest of his life and realised he had to manage it that his life turned around and his feelings of no hope turned to thinking that the future was not so bad.
He cannot speak highly enough of the pain management program he joined and says he is lucky to have had some very good support from his family, friends, employer and colleagues.
Wanda Cook (Vic)
Wanda experienced ongoing pain for many years after injuring her back at work. Her battles with pain, insurance companies and the medical profession caused her to try suicide on more than one occasion.
Eventually she underwent an amazing spiritual event (not religious) when she learned the power of positive thinking that gave her the confidence to manage her own care.
She returned to a nursing career, commenced her own advocacy company, created a program, worked as a director of nursing and became sought after in the media.
Aileen Jaji (NSW)
Aileen was reorganising her office's filing system when she hurt her arms and shoulders.
Surgery for thoracic outlet syndrom caused another condition that makes her skin irritated by most materials and reflex sympathetic dystrophy syndrome means the slightest vibrations cause pain.
She says there is not a day that goes by when she is not in pain. "I am still, to this day, learning to live with it."
Margaret Knight (NSW)
A wonderful GP and "gatekeeper" pharmacist, who kept track of all the drugs on Margaret's long medication list and made sure she was taking them safely, were the foundation on which a good medical team was built.
Since injuring her back nearly 20 years ago while lifting shopping, Margaret had to say goodbye to being "Super mum" but she has since rebuilt her life, and as long as she looks after her body with exercises and stretching, she can enjoy a life without medication and is pain-free.
Elizabeth Carrigan (Qld)
Establishing a consumer health charity (the Australian Pain Management Association) for people with persistent pain has helped Elizabeth and other pain management clinic participants control their ongoing pain.
Elizabeth has found that, left unmanaged, her pain levels hover around seven to eight out of 10 but medication can improve this rate by three to four points and physiotherapy and changes to her reasoning about pain improve it by another three to four points.
Daniel Daichi (Qld)
Daniel and his family were driving home from the Gold Coast six years ago when a four-wheel drive towing a caravan side-swiped his car, causing it to spin out of control and flip into the centre gully of the freeway.
Fortunately his two daughters were unhurt, but Daniel ended up paralysed and his wife has ongoing neck pain. Daniel said sometimes it was easier for him to accept the loss of the use of his legs than the ongoing extreme pain he has had to endure as a result of his spinal injuries.