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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My Face of Fibromyalgia

A long time ago (but what was actually March), I was messaging another FM page person (Fibromyalgia Wellbeing) about promoting awareness within the community. At the time I was very hesitant about putting my face with the condition and she wanted to promote her book (which is actually being launched July 14th at the Walkerville Town Hall at 10:00am).

I tried to contact all the current affair shows and lots of print media, with no response. I had attached a purely factual account of FM and perhaps that did not have enough appeal.

So, now, I have attempted to contact the print media again (I’m a bit scared of TV right now) with my own story (all I want to do is get the word out there!) – and I have already had some interest shown.

Now, if anyone has some media contacts, here is what I sent them (and what you could pass on, if you don’t want to share your own story:

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Fibro-My-What?

Me – prior to breakdown/depression

In 2010, I was about to turn 40, single and about to embark upon an illustrious career in law.

Prior to this new life, I had worked in hotels, at Crown Casino, on cruise ships and then back to Crown. While I was at Crown (the second time), I spent 6 years working (in the ‘real’ world) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver – and definitely no photos from that time!)

With the help of my family, drugs and counselling (& some photoshopping for wrinkles) – graduation!

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

Fibro-My-What?

I had never heard of it, either. But this isn’t some exotic, rare condition. This is a condition that affects between 2-4% of the population – most people (and, unfortunately, doctors, don’t know what to call it). It affects more women than men, and more adults than juveniles.

Fibromyalgia (FM) is a collection of signs, symptoms & medical problems that occur together but are not related to a specific, identifiable cause…which makes this disorder so incomprehensible to many, and so frustratingly cruel to those who have it.

The symptoms of FM vary a great deal. People with FM often suffer from varying degrees of muscular pain, stiffness and fatigue.

The pain of FM is usually described as aching, throbbing or burning and is unpredictable in nature. Its severity varies from day-to-day and different parts of the body tend to be affected at different times. Symptoms include:

  • Pain
  • Fatigue
  • Stiffness.
  • Headaches
  • Jaw and/or facial pain
  • Abdominal Discomfort
  • Numbness and Tingling, also known as “paresthesia”,
  • Cognitive Disorders
  • Disequilibrium
  • Environmental Sensitivity

Fibromyalgia Syndrome is often described as the ”Irritable Everything Syndrome” and increasingly, additional symptoms  and syndromes are being associated with FM.

One of the first things I did when diagnosed with a ‘probably fibromyalgia’ was get on the internet – leading me to blogs, medical pages and associations. Although, disappointingly, there was nothing I could find in Australia. Historically, FM has been considered either a musculoskeletal disease or neuropsychiatric condition. As such, it falls under the umbrella that is the Arthritis Foundation, despite the Foundation being ill-equipped to deal with the multi-faceted problems that arise from the condition.

Prior to any diagnosis, FM sufferers receive all kinds of comments from family, friends and even doctors: ‘It’s just you getting older,’ ‘it’s all in your head,’ ‘do you really think there is something wrong with you?’ Even after a diagnosis, which itself takes a long time and an exorbitant amount of money, as a FM diagnosis involves at least 3 months of pain and the exclusion of everything else so sufferers must be tested for everything beforehand, many health practitioners are unwilling to consider this condition as a REAL condition.

At this stage, those that do believe that what you are suffering is REAL refer you to a rheumatologist. Yahoo! Finally we get a diagnosis – however, there is no cure. Nor is there an acceptable amount of pain relief.

Notwithstanding that I take approximately 14 medications each morning, that I have a Bachelor of Laws (Honours), that I have a Diploma of Business, and that my brain thinks I can do anything, I am writing this from my couch. There is no word for the fatigue that I feel throughout my entire body. My ankles and wrists feel swollen and at least twice their size, despite no outward change. My face, head and neck are throbbing from some unknown pain. And I am sitting in the dark because the natural light is killing my eyes. So, no, sufficient pain relief for a FM sufferer does not exist.

Mind you, this is not every day – sometimes there is respite from many of these symptoms (although never all of them); however, it is impossible to predict when these better days will happen. This can make it impossible to hold down a job. What kind of employer wants some-one who cannot be relied upon to turn up at every shift. Chronic illnesses are fickle. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

So what do people like me do?

Making a phone call is an energy-consuming activity that requires a rest afterwards. In fact, most things require a rest afterwards. We clean our homes in stages because it is too hard to vacuum the whole place in one go – even though I only live in a two-bedroom unit. We incorporate gentle exercise classes such as, hydrotherapy, yoga, tai chi for arthritis, into our lives (for those that can afford it). We grieve for the person we used to be. We try to maintain relationships with people around us – even though, most of the time, we have to cancel any plan we might have made.

I am currently on Sickness Benefits, which gives me almost $500 every fortnight. Should be able to live on that, right? What about when your medications cost about $250 per month, and your mortgage/rent needs paying, and your doctor has a gap of over $150? Then what?

The Disability Pension is slightly more but I was rejected. I was told that my condition was not completely diagnosed as I had further doctors’ appointments. I am currently appealing as those extra appointments were made by me because I do NOT believe that this is the best that medical science can do for me. It is almost like Centrelink wants me to give up totally before they are willing to help me.

Don’t get confused – I am not a permanently-complaining, miserable old cow! You need to understand the difference between ‘happy’ and ‘healthy’. When you’re sick, you probably feel miserable, but you also know that it will pass. I’ve been sick for so long that I can’t afford to be miserable all the time. In fact, I work hard at not being miserable. So I can and do sound happy a lot of the time; but this means that I’m happy – it does not mean that I am well. I may be in pain and sicker than ever.

I have a limited amount of energy to expend. I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realisation that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. I am NOT giving up. It’s just how life is when you’re dealing with a chronic illness.

Fibromyalgia is a chronic condition. This means that it will last a long time – perhaps forever.

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So, that’s it – I really don’t know what else to do at this stage; as I am feeling quite down because most of my efforts are hitting a brick wall. I know that WE know about FM – but WE need to get THEM to know.

It’ll all look better tomorrow.