There has been so much in the media and social media about chronic pain and opioids - research papers, surveys, someone’s pain story, some medico’s advice, articles by pain organisations and pain consumers talking out, and the list goes on.
Who do you follow? Who do you believe? How do you decide to take on board what you hear and try for yourself?
In this Covid-19 isolation period we seem to live with the news giving us all the facts, politician’s advice that counteracts one another, State Premier’s that are saying different things, medical experts advising us, statistics from other countries, information about “the curve”, talk about our economy, talk about the homeless, talk about the our business and unemployment, talk about education, and this list, too, goes on.
I ask the same question as above. Who do you follow? Who do you believe? How do you decide to take on board what you hear and try for yourself?
I ask the same questions about the information circulating through the media – as a person living with chronic pain – who do I follow? Who do I believe? How do I decide what to take on board and try for myself?
When I was first asked to share my pain story years ago, I was attending my third pain clinic. However, this clinic was different in that it offered me a way of managing my pain that worked for me. I felt hope for the first time in years, I had periods where I did not feel afraid of my future, I made the choice about coming off my opioids, most of all I spoke out about my depression and received help.
Pain is a constant in my life, that is a fact which is not going to go away. I have lived with pain now for more than 42 years. For the last 6 of those years, I have written and spoken about my pain story numerous times. In sharing my story my aim is to let others know that I found it possible to move to another space – a space where I was in control and the pain was not controlling me.
I found other methods to relieve the intensity of my pain, which involves having a support team around me. By this I mean professional people who understand the journey I am now on to control my pain. They understand and help me when things get tough, and it does get tough! These people are the professionals, the doctors, the physios etc that understand my pain and the direction I wish to take. They are not giving me ‘other information’ to confuse me. They are supporting me.
I found it fascinating to learn what my pain was doing to my body and my mind, and how I let it control me at times. I found that I could lower my use of opioids and not harm myself and not be incapacitated. I have learnt that there is still a need to use opioids. However, this is now rarely for some “flare ups” so the pain does not take control again. I talk about ME and MY story and I am only too well aware that one shoe again doesn’t fit all! If I am to say anything I think – give it a go! What harm can it do but get your support team in place.
I am grateful that I want to keep learning about pain to learn what helps dampen down my pain. I am grateful for my physiotherapy clinic that continually educates me and shows me how to strengthen my muscles.
Now, living through this Coronavirus/COVID-19 crisis and watching the news at night, seeing people stockpiling goods off the grocery shelves and hearing others ask, “why?” I know the answer to that question. “Fear” is why. It is mimicking my feelings of what it was like for me for more than three of the four decades I’ve lived with chronic pain:
Fear of the unknown
Fear that I won’t get better
Fear of not having what I need to relieve the pain
Fear of depression overtaking me
Fear of isolation
Fear of people not believing me
Fear of people not understanding
Fear of unaffordable medication
I am so pleased that I am now in a different space managing my chronic pain. My response to this isolation and restriction of services has not crippled me. My physiotherapist and health advocate, Paul Dardagan is supporting me. The team of people, including my GP, who I asked to walk with me, sustain and support me. This team is my most important piece in the structure for managing my chronic pain. The government has acknowledged physiotherapy as an important essential service. I go to the physio regularly who is helping me stay out of a wheelchair and I do rehabilitation exercises at my home. My GP understands my pain and has been very supportive.
I am writing these words even in my third day of a flare up. I’ve been able to have access to my physiotherapist, the nutritionist and to access the medications I need at this time to take the top off the pain level, so it does not get out of control.
Now, reflecting on my pain during this pandemic, I am so pleased that I found what I needed to support me in living with my chronic pain.
I am no expert in other peoples, pain and I have no medical or educational qualifications in pain and certainly no experience in Government policies. But I am willing to go with the process set out for me in this pandemic and I am able to manage my continuing pain journey.
The words on my lips are “thank you”- thank you to the individuals and the organisations that work tirelessly to help people like me live with chronic pain and live through this pandemic.
Sister Mary-Lynne Cochrane
Chair of Painaustralia’s Consumer Advisory Group and Painaustralia Board Director