Denise's story
My pain stems from several sources, really, but mostly it’s the result of living life post-polio. I was a child when the polio virus attacked my central nervous system including the brain stem. The resulting damage affected a great deal more than just muscles, as once thought.
Polio pain is distinctive - an intense, “deep within the bone” pain. Whilst it has been a regular visitor since childhood, time and an active life have also taken a toll.
A wife and the mother of two boys I managed to squeeze in a nursing career, primary school teaching and a master’s degree in counselling. I was helping to pioneer the role of primary school Chaplain in Victoria when the pain, fatigue and loss of condition forced me to stop working. Help and understanding where still a long way off. I was on the verge of serious depression, blaming myself for not being "strong" enough to "put up with it", "suck it up" and "push through". This tends to be the attitude of society regarding pain. It is damaging and demoralising.
It took a two-week week stay in a rehabilitation hospital to enable me to see the reality and learn what to do with it. I began to feel a glimmer of hope returning. It wasn’t easy though.
Reality now involves both acute and chronic muscle damage, neuralgia and joint degeneration. Understandably, this long-term pain and associated polio fatigue and weakness has sensitised my whole system so at times just about anything can contribute to the pain including strong light, smells and noises.
When this was first pointed out to me I was insulted; surely this overwhelming struggle was due to so much more.
When it was first suggested that deep, controlled breathing and relaxation could help reduce the pain I was downright angry. Clearly these people had no respect for the agony I was in.
However, I agreed to try the approach, the aim being to desensitise the system and “flick the switch” that confuses pain origin.
I was truly amazed. For the first time in my life I felt I had gained some kind of control again over the pain.
I was also encouraged to start a journal, writing down everything I did and the outcomes in terms of pain and fatigue. I added pleasure and frustration too, simply because I found both of these, in some measure, could also contribute to the pain or my perception of it. I would measure in a simple scale of 1-10; soon I became an expert on me - what affected me and what I would allow in order to gain some quality of life again.
We are not talking pain-free here - would that we were! No, this is about getting to know myself and what I can tolerate, understanding the pain and overcoming the fear it can cause.
It is the difference between the exhausting, overwhelming ongoing onslaughts that just drain life and hope and the empowerment to rein it in to something more tolerable without just taking more medication and suffering the consequences. It is taking control, understanding and allowing for payback - and taking care of me.
Long ago I discovered this little trick. If I developed a headache, I would drink the water without the pills. If, after 20 minutes, I still had the headache then I needed the pills and it was not just dehydration.
This stands as an example of all the other things that can contribute to pain and our perception of it.
I know a few too many highly educated and talented people, who must cease or curtail their contribution to society, because of the difficulties experienced through pain and the lack of understanding to address it. What an enormous waste of a valuable resource this is.