By Terina & Graham Scott with Karyn Markwell
Terina lives with chronic pancreatitis. When her condition flares up it can cause extreme pain. It’s changed her life, and the life of her husband, Graham. Here, Terina and Graham tell their stories of coming to terms with this challenge.
I vowed thirty years ago to take my wife, Terina, ‘in sickness and in health’, and I meant every word. Over the last six years, Terina and I have restructured our lives to cope with her persistent pain.
We worked side by side in our family business until we embarked on a trip to Tasmania in 2007. While on holiday, Terina became ill with chronic pancreatitis. Back home, she struggled with the heavy medication prescribed by her doctors, was unable to drive and often slept through the day.
In 2010, aware of Terina’s growing needs, I bought a home-based business and employed two staff, so that I could be constantly near Terina. Terina becomes sick so suddenly and I must rush her either to the doctor’s or the hospital for emergency care. It’s a huge relief that I am now around during the day.
Terina has been unable to attend a pain-management clinic, due to the distance of the nearest clinic from our home, as well as being too unwell to attend day after day. Instead, we gain support from the APMA Pain Link telephone helpline and online information for people with chronic pain. This means we can access options – and hope – without having to leave home.
When needed, I take over the household responsibilities, including doing the washing and cooking the meals. When Terina is very sick, I help her to get dressed, because she can be pretty wobbly on her legs. Occasionally it is challenging being Terina’s carer, because her pain and anguish distress me. The most challenging thing about being a carer is being helpless to take away the suffering of someone you love.
I have always felt quite fortunate when requiring care. However, in the early days after having numerous ultrasounds and CT’s (which never provided answers) I was desperate to have an MRI performed. I was finally sent to a specialist, who refused to perform an MRI. I never went back to see him as I felt he never cared for me as a patient. When I finally had an MRI (organised as an emergency) I got my answer of chronic pancreatitis. By that stage I had done a lot of reading and had concluded that was what I had wrong with me, so it was a relief rather than a shock!
Finding a GP who really does care is a huge challenge for anyone who suffers from chronic pain. In the early days, I repeatedly asked myself, just how much tougher do I have to be? as I was never given anything for pain relief. I thought that was pretty cruel as I was in so much agony. I recall asking my GP if he truly believed me when I told him what I was going through, and his reply was always “yes”. That was a relief to me! I was finally given Tramadol SR 100mg x 2 per day for pain plus Tramadol 50’s amongst other drugs by the first specialist I saw. That was such a relief, to finally get something for the pain.
From time to time I require emergency care and the surgery I attend is faultless. My husband rings and says we are on our way, I get taken straight through to the treatment room and have all but once been seen by my own GP. I feel so fortunate to have this marvellous facility available.
Sadly, I feel too many in the medical profession are all about “fixing” you as the patient. When they can’t do that, they seem to lose interest and that hurts. This is my daily life, I am a real, live person and this is happening to me day in, day out…. While I’ve had this chronic condition, it appears all the doctors want me to have a certain amount of ownership of my treatment but do not seem to like it at all if I ever suggest anything myself! It is pretty tricky to know how not to step on their toes!
I have always maintained that the mental challenges are almost as big as the physical. It is a tough and lonely old track to travel living with a chronic illness which results in dreadful pain.
Terina and Graham’s stories have come to OurHealth via the Australian Pain Management Association (APMA). If you would like to contact APMA you can call their Pain Link helpline on 1300 340 357 or visit http://www.painmanagement.org.au/