I have Fibromyalgia, an invisible and complex chronic pain syndrome. It has had me bedridden 4 out of the last 6 years and been the bane of my life for much, much longer. The pain management team at Randwick POW and in particular Dr Bhar has helped me "re-discover" some sense of a normal life. I was living and working in California when the Fibromyalgia slammed me down. Bedridden for months I finally made my way back home to Sydney, just in time for my husbands back surgery. My 25 year career which spanned Asia Pacific in Information Systems, Technology and Product Management was over. My business is now being a energy envelope manager, full time carer for my family and trying to reinvent my professional career via a mobile apps.
My husband Blake had a work injury which resulted in spinal fusion which has helped his mobility somewhat but not relieved the torment. He has been in physical and mental anguish for almost four years. The depression and subsequent anxiety resulting from this has been very traumatic. He was voluntarily admitted last week into POW hospital PEC ward after an isolated, independent struggle with suicidal depression.
The real "Mrs Hansen" my mother in law, has lived with chronic pain for over 10 years, her earlier rheumatoid arthritis is nothing compared with her battle against ovarian cancer. She is one of Australia's longest living survivors who diagnosed at stage 5. St Vincent's Hospital and her oncologist recommendations for palliative chemotherapy has her maintaining some quality of life. Judy will be on a story about ovarian cancer on the Today Show soon. Her love of her grandchildren and an active interest in holistic wellness has blessed us with more than the 6 month sentence originally given on her life.
It might be reasonable to hypothesise that the three of us have been afflicted with more than our fair share of pain and fragility. Yet once we start talking authentically with others, we discover we are not alone, almost every family has/does/is having similarly challenging experiences.
It is easy enough to say co-morbid with pain is fatigue and grief. Grief and loss. It is much harder to understand how these thieves impact on our life. Where is the person I used to be, my social self, my work, my lifestyle, my hopes, my dreams and pretty much the basics of my life. They went out the window.
Once the shock wears off, the trauma continues. It becomes a challenge to trust your own body and instincts. Disappointment is amplified. Friends just stop inviting you. Too unreliable. Our pain is in moments mirrored in the voices of the children. Nieces and nephews who do not understand the long endless invisible "ouch" that stops Aunty Susan and Uncle Blakey being there for them. We baked her a cake and made beautiful cards why didn't she come over? Heartbreak all round.
Navigating life with the pain volume maxed out is challenging. It is even more difficult when it is invisible - you look great - feel rotten. It's a definitely the short straw, sometimes it literally takes all your juice just to get to the kitchen or bathroom, let alone leave the house and meet friends. Some days I've managed to get fully dressed, makeup on, then I got that feeling .... overwhelmed, dizzy, nauseous. The jack hammer is going off in my head, back, arm, leg - all in all it's a nasty throbbing, stabbing, cold, prickly feeling.
The blessing for fibromyalgia sufferers is that we do get the occasional good day amongst all the flares. Sometimes like so many of us, we roll over and put a cold pack on our temples, a heat bag on our lower back, some sonic tones in our ears, tens machine, FAR, magnetic magic and pray for spiritual strength to withstand the onslaught.
The key they say is pacing yourself and staying within your energy envelope. My mother in-law has developed this as an art form. She is a constant source of inspiration to me. My husband similarly suffers a silent tormenting ache that has taken him beyond misery and despair and seriously compromised his will to live.
It would be a great honour to be selected as an individual to speak at National Pain Week conference and share some insights, humour and earnings from my journey with chronic pain. make a real difference in the lives of fellow sufferers and their family and friends. I would like to offer an additional way to raise awareness by sponsoring a mobile application for the event of chronic pain week Australia.
This is a short synopsis of my story and the tale will grow in the telling. Also some well deserved sleep and quiet time may allow some editing to bring forth the salient matters which will resonant with attendees. As I mentioned earlier my husband is currently in hospital. I am in day surgery this coming Wed for nerve blocks. I am also trying to study at university and get my business off the ground. This is what we do, strive to survive!