I fell down some marble stairs in my apartment in Caracas, Venezuela in 1977. My husband and I were living there for a year or so teaching English. I remember the pain vividly however I managed to eventually stand up and move. Over the period of a few days I seemed to recover quite well however I did have a heavy feeling in my lower back and legs. I ignored it as I was only 23 and didn’t want a silly thing like a fall stop me from enjoying my life.
Thirteen years later I was teaching Biology, Science and Maths in Townsville in a girls’ college. I was very happy with my job and loved all the wonderful people I was working with. However, as time went on, the pain became worse to the point that I needed medication night and day.
I tried many therapies like massage, homeopathy, physiotherapy, acupuncture to name but a few, and nothing worked.
I also had a constant headache for years. The pain became a focus as it was ‘in my face’ all day and all night, every day and every night. I had a wonderful GP who sent me to a neurosurgeon.
This neurosurgeon, after MRI and other scans told me that the fall had done some damage and that he could secure it all with a fusion operation. He operated and then put me into a neck to knee cast for about 6 months only to be taken off during nurse- supervised examinations.
My life totally changed after that surgery. I was very thin, weak and totally incapacitated. I was taking a lot of pain medication. I couldn’t concentrate, read or even have an intelligent conversation with my friends. If it weren’t for my best friend, husband and sister, I think I could have become suicidal. What a terrible time in my life. After the cast was removed I was very weak and my muscles were quite wasted. I tried to walk, but the pain was unbearable. The more I moved, the higher the pain went. This has remained until today.
I did not like the 1-10 pain scale because it was so subjective and hopelessly unable to tell the doctor or nurse how I was really feeling or coping. My scale consisted of ‘just coping’, ‘I want to cry so leave me alone’ and then ‘devastating’. My mood showed my pain and so did my face. I couldn’t hide it. A couple of years passed. I was an invalid - doing nothing. I couldn’t have worked as previously, so I did some part time tutoring. My pain was there, only varying in amplitude twenty four hours a day.
This is still the case; I never get a break. Even when I take a lot of medication, the pain remains only it becomes a little softer in strength. I couldn’t work, I couldn’t do anything much. I had become a ‘victim’ of chronic pain. Since then I think I have read everything there is to know about chronic pain. None of it took the pain away or really helped me a great deal although I tried to do whatever was recommended.
My pain became ‘ME’ so we moved to Victoria to be with family and friends, desperately needing a change. When we came to Victoria I was a little better, so I started working again while relying on a small amount medication to get me through the long days. But before long, the pain was just too much, so I stopped work in Victoria.
The pain won. My job, my self-esteem, and guess what else? My marriage.
My husband said to me one day “I cannot live with your pain any more” and “I cannot live the life we are living”. So once again the pain won and my pain was ‘ME’. And then I was suicidal. I took up my Master’s degree but only did half of it as I just couldn’t concentrate enough to think through the pain. I had nothing left, or so I thought.
The rest is due to desperation and stubborn determination. I met a wonderful man who helped me see through different eyes. I attended a pain clinic which taught me what I don’t want to do - as well as what I do. I started water aerobics and a little walking. I learned and started researching mindfulness. I took control and the pain, on the whole, answers to me now.
On a really bad pain day, I take time out and go to bed with my pain relievers and a couple of good DVD’s or books. These days I don’t try to beat it. I do something nice for me. On the good days I exercise in the pool, go out with friends, get my nails or hair done and involve myself in my other interests. I have lots of support and I am not afraid to talk about chronic pain to anyone interested.
I am raising money, by crowd-funding, for a trip to the Quest for Life – Living with Chronic Pain retreat in November and I have raised enough to pay for my fares in just a month. I intend to send out a report of my personal experience of the retreat to the many Facebook friends I have met through my own Chronic Pain network on Facebook.
Pain sufferers need every bit of help that they can get, so I am flying their flag in Victoria. I cannot involve myself too much in the National Pain Week campaign at the moment due to my physical restrictions. However, I will get there somehow and sometime. I am determined to help people in chronic pain. One in five Australians need help with chronic pain. I just can’t sit back and ‘not see’.
I have a facebook page called ‘Severe Chronic Pain Group’. Its early days but I am trying to keep it all positive and help people understand that chronic pain is not necessarily a death sentence.