It Can’t Hurt to Ask

The Australian Parliament is asking for public submissions into chronic disease prevention and management in primary health care.  This is our opportunity to write to them and ask them to fund research into Fibromyalgia and cater for patients who require home care, visits and support from medical professionals.

Despite an estimated one million Australians living with Fibromyalgia, there is limited services, support and information available. The gaps between research and daily care are unacceptable.

Now is the time to ask the Federal Government to provide:

  1. Leadership and coordination of a national approach to provide integrated management of Fibromyalgia services, building on the work of state governments, private sector providers, Medicare Locals and Local Hospital Networks.
  2. Access to quality services for all Fibromyalgia sufferers including people in rural, regional and remote areas, indigenous and socio-economically disadvantaged communities, children, and older Australians.
  3. Access to education and training for health professionals in particular as it relates to early intervention, multidisciplinary team practice and the early identification of Fibromyalgia.
  4. A public awareness campaign to address discrimination, misunderstanding and stigmatisation of people with pain within the community, including in the workplace and in welfare and compensation systems.
  5. Funding to provide community support services including consumer information, self-management education and telephone support (crisis help line).
  6. The development of a national research agenda to address gaps in knowledge about Fibromyalgia and improve clinical practice in pain management.

The deadline for submissions is Friday, 31 July 2015.

Please make a submission if you can.

 

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Dream the Impossible Dream


As kids we dreamt of being astronauts, professional athletes, actors and race car drivers. I dreamed of being an actress, then a maths teacher, then Prime Minister. Most of Australia’s Prime Ministers had been lawyers – humanities and legal studies here I come.

I kinda messed up in my final high school year (I discovered boys! and forgot to study) so my plans were postponed. So after working in hotels, in a casino, on cruise ships and then back to a casino (phew! that was a quick 15 years!), I got my act together and started law school at the age of 34.

Me (Hee! Hee!) after being sworn in by Australia’s Governor-General Quentin Bryce

It took a while but, at 40, I was a practising lawyer. The dream was becoming reality (although Prime Minister was still a while away)

Halfway through my degree, I was hit (HARD) by depression but it seemed to be under control (after many an experiment with meds) by the time I had a full-time job. However, within a month, I was having trouble getting through a full day, it was difficult to walk to the post-office and then walk back up the stairs to work, and my hands were killing me by lunchtime. Every day was a new day in pain. I had had intermittent pain and fatigue for quite a while but this was new!

Terrified of what was happening, I called the multitude of doctors in my medical team that I had acquired over the previous 4 years. Nine months later I was diagnosed with fibromyalgia and all my dreams felt distant and unreachable. I couldn’t maintain a regular work week, much less strive to be anything more than healthy. Intensely competitive by nature, the defeated feeling that resulted was new to me. No matter how hard I tried, I couldn’t see how I could succeed at my career, having a family or even staying healthy when I was constantly fighting an unrelenting condition.

“Small steps,” my doctor prescribed. Ha! Didn’t my doctor know that I was an overachiever – I was ALWAYS the best at whatever I did! Small steps don’t work for me. It has been hard not to get upset and discouraged, and most of the time I’m not (although this past week with medication changes is killing me!), but it’s really slow progress. But I am NOT giving up! I will have to modify how my dreams fit into my reality (and perhaps Prime Minister is now a little out of reach!) but being a really good lawyer who advocates relentlessly for her clients is still reachable.

I couldn’t and still can’t stand the thought of giving up because then I’d lose, and I can’t lose. It’s not my nature. Our dreams form and evolve around our life experiences, but it’s what we overcome to reach our dreams that define who we are and how we’re remembered.

Have you modified your dreams? What dreams are you still chasing despite your diagnosis?