Mandy's story
My problems started in the early 1980s with the introduction of computers in most public service departments.
In 1986, I used to run a recruitment section within the old Commonwealth Employment Service (CES) and I used to hold the phone under my chin (wearing headsets was not an option) so I could use my hands to type.
Unfortunately I was born with extra cervical ribs and fibrous bands, which is quite rare. Working like this compressed the ribs on my thoracic outlet on both sides, as when the right side was sore I swapped to the left.
It took a few months before I experienced swelling, pain, discolouration of the skin, vascular changes and various other symptoms. At the time, I had a good career working full-time and I was married with two children aged three and four.
Within three years my life completely changed. I lost my career, my pain became chronic and I was depressed and unable to work. I couldn’t even bath my children, drive my car or perform menial household chores.
I became a victim within the medical world as one doctor after another told me “I don’t know what’s wrong with you”, “I can’t see anything” or “it must be in your head”. It was only an astute rheumatologist who worked out what was wrong.
I had thoracic outlet compression and had developed chronic regional pain syndrome (CPRS) type 1 which is also known as reflex sympathetic dystrophy or RSD, affecting both my upper limbs, hands and cervical spine.
In October 1989, I was sent to a surgeon who performed bilateral sympathectomies to relieve my excessive sweating and trans-auxiliary rib resections of the extra rib, bands and first rib to try to alleviate the pain. These were large operations and it took a couple of months to recuperate. Unfortunately they did not help - in fact they have left a lifelong legacy of problems.
I started to experience very low blood pressure, as having my cervical ganglia removed completely from both sides of my upper body (cervical symathectomies) exacerbated my already low blood pressure. I used a wheelchair for a couple of years (I used to embarrass my kids when I would get out of the car, walk around and get the chair out then sit in it to go supermarket shopping).
It was at this time my marriage broke down and my children went to live with their father. That was probably the lowest part in my life.
Then, through chance, I was referred to the Caulfield Pain Management Clinic.
Under their wonderful guidance and help, I was able to pick up the pieces and get on with life. I was placed on liquid methadone (my body was not making enough of its own pain relief) and other pain relievers, and given phentolomine infusions for pain blocks at intermittent intervals as well as therapy, intensive care and counselling.
Fast forward 15 years and I am still on methadone (though in tablet form now via a government prescription). I have remarried after meeting Paul, a six foot seven inch policeman, on a cruise to celebrate my divorce and 40th. I have had another daughter – Tea Lee, who is now 11 and the light of my life.
I work part-time, as my condition is still chronic but I now live with my pain.
I still suffer from low blood pressure but it is now only in very hot weather. My little girl has never visited, nor will she ever, visit the beach with her mum. You have to make adjustments and sacrifices all the way along with chronic pain and your children (or family) suffer the loss with you.
I have had my credibility doubted all my life - I actually won a court case this year due to discrimination under the disability act. I fight to hold my head up high and succeed the best way I can. Just because you don’t look disabled doesn’t mean you are not disabled.
I started doing art work at a local studio and found this a wonderful distraction for pain. I have won several shows and prizes for my art. I went back to university in 2000 and made sure I got high distinctions.
Yes, I am have this disease, yes I have a disability but I try to achieve every day and teach my friends , family and children - my older two children are now 29 and 27 and I have two grandchildren - that anything is possible as long as you keep trying.
Matt my son is now 27 and a musician. He has been affected emotionally throughout this time but he is finding his way through life and pursuing his dream. I really hope this will happen for him. One of my proudest moments was seeing him perform on the stage at the Palais in St Kilda.
My eldest daughter, Brooke, has just been diagnosed with CPRS and fibromyalgia. Her injuries are different from mine but unfortunately her pain is the same. I now find it my challenge to help her fight.
Brooke is just starting out down the path of the medical profession minefield and is finding out just how inadequate treatment for chronic pain is. She has the experience of watching me and my struggles and I hope this helps her at least avoid some of the pitfalls.
It is amazing just how inadequate treatment is for chronic pain and that ordinary people like me and Brooke need the professional help and empathy sadly lacking in the medical profession. We desperately need funding, training and follow-up to improve chronic pain education.
It is a silent disease. I call it the “black cat” as I have been so unlucky to have had it cross my path. It affects many millions of ordinary people just like me.
Sometimes life is not fair but I have learned that it is what you make it - and mine is getting better.
