She shared her personal experience and insights providing these aspiring physiotherapists with a unique opportunity to empathise and gain firsthand knowledge of how to work effectively with patients like her.
We hope her story will assist them in bridging the gap between patients and practitioners!
Thank you to Painaustralia for this amazing opportunity.
"Medications supply is so important."
Although I was nervous during my first studio appearance, the team was incredibly friendly and welcoming, which helped me feel at ease.
It was such an amazing experience...
Watch the footage here
Radio interview discussing MINDmyPAIN Chronic Pain Self-Management Journal on 28th September 2021 with Chris Zinn
Today, after two years in the making I launched my journal, MINDmyPAIN, to help people living with chronic pain manage all the things they do to reduce the impact of pain in their life.
Sydney 21 September 2021 – To mark International Pain Awareness Month, a new journal is launching that will help people self-manage their chronic pain by keeping track of daily goals, medications, exercise, triggers and much more. Known as MIND my PAIN, the journal was developed by Sydneysider Kim Sullivan who was left with crippling chronic pain after being electrocuted in a swimming pool.
‘The electric current that surged through my nervous system 22 years ago damaged my nerve endings, spinal cord and brain cells,’ Kim said. ‘It also affected my memory and cognitive function. Afterwards, I found it difficult to keep track of the things that flared up my pain and the effect of the different medications and treatments my doctors tried. At medical appointments I became anxious because I couldn’t remember how the headaches, fatigue, shingles and muscle pain had changed since my last appointment. I also forgot which questions I had planned to ask.’
Kim sometimes forgot she had taken her medication, running the risk of taking a double dose. She also lost track of which activities and foods triggered her pain and what things helped. Keeping on top of her many prescriptions and when they were due to expire was also a constant stressor. Being so forgetful and getting muddled about her treatment regimen embarrassed Kim, adding to her feelings of hopelessness and despair.
Kim dreaded medical appointments because she worried about going to the right place, arriving on time, getting the facts right about her symptoms and remembering how recent treatments had affected her. Frustrated, she decided to take matters into her own hands.
‘I’m a very organised person,’ she said, ‘and I realised I had to create a system to help me manage my pain. I searched the local shops and online for a diary or journal to record my medications, triggers and appointments, but there didn’t seem to be anything available.
‘My only option was to put my graphic design skills to work to create a systematic approach to managing my condition. I wanted to be in control of my life rather than being a passive recipient of treatments by medical and health professionals.’
From then on whenever Kim was stuck in bed with shingles or a severe headache, she would open up a loose-leaf folder, record her symptoms and what triggered them. After doing this for a while she pinpointed the worst triggers and tried eliminating them. Much to her surprise it worked. Kim then built on her initial success by creating a weekly diary of medications, exercise, diet, meditation, sleep and mood. She found it helped her to assess the impact of changes she made to her lifestyle, making her feel more organised and in the driver’s seat.
‘Once I made a note of everything that affected my pain, I noticed patterns emerging. At my next medical appointment I felt more confident because I could clearly tell my doctor about all the interconnected things that affected my symptoms.’
This helped the doctor suggest changes Kim could make to her lifestyle to reduce the impact of chronic pain in her life. Little by little, Kim fine-tuned the journal and added a pocket at the back to keep all her prescriptions in one place. From then on, she no longer worried about forgetting which prescriptions to fill every time she visited the pharmacy.
‘After creating the journal, I would open it at medical appointments and the pharmacy and everything I needed was at my fingertips,’ she said. ‘I no longer had to worry about what I was forgetting. My anxiety level dropped, and I finally felt as if I was in more control.’
The latest version of the journal tracks goals, triggers, medications, treatments, exercise, meditation, appointments, mood and progress over a six-month period. This gives Kim’s pain management team a precise snapshot, helping them to fine-tune her treatment plan.
‘It gives my medical team vital information about my condition. It also gives me peace of mind. After seeing how much it helps me to self-manage my health I wanted to share it with all the other people I know who live with chronic pain.
‘One in five Australians, that’s 3.4 million people like me, live with chronic back and neck pain, migraine, arthritis, fibromyalgia and other pain conditions. I want them to experience the same sense of empowerment my journal has given me. It puts us all in the driver’s seat instead of always feeling as if we are on the back foot at medical appointments.’
“MIND my PAIN keeps me organised. It has given me the sense that I can be the master rather than my back pain controlling me.” Jodie
“MIND my PAIN is one of the most practical and effective tools I have encountered for chronic pain management. Devised and written by someone with long-term experience of chronic pain, it is a highly functional way of providing each individual user with insight into how their pain is felt and how it can be managed. Mind my Pain also greatly assists the user to articulate their particular experience with pain to the health professionals who are working with them to resolve those issues.” Julie
“MIND my PAIN is fantastic. Many people living with chronic pain will benefit from it.” Sam
For more information about MIND my PAIN visit: https://mindmypain.com
My life changed irrevocably one Black Friday in 1998 when I was electrocuted in a swimming pool. It left me with crippling headaches, chronic low back pain and recurrent attacks of shingles. Read my story in Pain News Network about how I turned from victim to victor.
One of the ways I learned to reduce the impact of pain in my life was to develop a journal, MINDmyPAIN, that puts everything I need to manage my pain at my fingertips. MINDmyPAIN puts me in the driver's seat after decades of debilitating chronic pain.