65km Trek for Fibromyalgia

CONQUERING THE OVERLAND TRACK -

WHEN:

September 22nd 2018

AIM:

To raise funds and awareness for Fibromyalgia research and treatments.

All proceeds will go to the Fibromyalgia ME CFS Australia Bridges and Pathways clinic in Adelaide.

MY STORY:

Little is known about Fibromyalgia, so I thought.
I’d never even heard of Fibromyalgia up until recently when I was diagnosed with it.

Specialists don’t know what really causes it and if or when there’ll be a cure or an effective treatment available for the millions of people around the world who suffer from it.

It’s all just a guessing game at this stage as to the cause of it and the best way to treat it.

What some specialists have found so far is that it stems from the central nervous system where the brain shoots out uncontrolled pain signals throughout the body. New research suggests multiple systems in the body can also be responsible for widespread body pain.
Some days are worse than others.

The rheumatologist assures me ‘my pain is real’ when I’ve questioned her in relation as to why nothing much turns up in my blood tests and scans besides one test that showed inflammation in my spine.
I say to her
‘Surely if nothings showing up then it must be some sort of a mental disorder or I’m going a bit cray cray’.
She’s quick to respond ‘It’s not in your head, the pain in real, your brain is sending out pain signals that it shouldn’t be’.
As much as she tries to reassure me, it still leaves me with a bit of doubt.

No day is ever pain free.
However you do learn how to better cope as time goes by and how to deal with Fibromyalgia pain. Maintaining a sense of humour and an active lifestyle is key for survival.

On the really bad days my spine feels bruised and on fire, the nerve pain in my back pulls into my chest catching my breath, whilst electric waves of pain run throughout the rest of my body making my skin crawl and muscles ache.

I was recently told by a friend that one of her mates took her life as a result of fibromyalgia as she could no longer live with the debilitating pain.

I get it. I understand 100% why she did it and in the early stages of the illness I also remember telling doctors and specialists that ‘I’d rather be dead than live in this pain all the time’. It’s exhausting and at times depressing.

As time has gone by I wouldn’t say the pain has got any better but I have taught myself new skills including pacing, working with my doctors and to adapt my lifestyle to grow mentally stronger so that I am better equipped to deal with the ‘bad days’ or as the medical professionals call them ‘flares’.

This is all well and good but there is still so much research that needs to be done into Fibromyalgia to enable us to receive the best care until they find a cure.

How come so many people suffer unnecessarily from this illness and that I’d never even heard of before!

A pain with no end date is a life sentence. A cruel existence for many.

That’s why in September this year, yep, during one of Tasmania’s colder months a group of friends and myself will be taking on the Overland Track to raise money towards Fibromyalgia research.

The reason I have planned to do it during one of the colder months is for the challenge, I believe that if I can conquer this then I can overcome any obstacle that may lay ahead with this illness and tackle it head on.
It will be a game in mental agility and personal life skills management.

The mind controls the body and not the other way around. I will continue to raise awareness and kick it where the sun don’t shine until there are better treatment options out there or maybe even a cure for Fibromyalgia.

WHAT THE FUNDS WILL GO TOWARDS:
There is currently no clinic research demonstration centre in Australia where patients can receive the latest treatment and doctors can refer people to access the latest information and resources.

Funds raised from my walk will go towards:
• staff salaries for a new clinic which will be working with universities to pilot Fibromyalgia and Chronic Fatigue Syndrome general practice early intervention care plans and
• evaluating Centrelink and NDIS (disability assessment management criteria).

The money will cover the Clinic doctors’ salary gaps allowing them to spend more time with each patient and to liaise with the researchers to collect the best possible evaluation data. During the pilot practice nurses will be trained to oversee personalised care plans and referrals to other primary care providers.

Once this program has been evaluated for the Australian health care setting, it will be rolled out Australia wide, helping millions of Australians who suffer from this debilitating illness and their health care providers.

DISCLAIMER:

If we hit unfavourable weather and the conditions become too unsafe we will abort the mission and plan another. I was forced to do this a couple of years ago when a storm hit at 1200 metres.

The Overland Track during this time of year can be deadly, so although we are prepared for snow, ice, rain and fog, due to the time of year we’re going we will not be taking unnecessary risks and putting our lives at risk if the weather becomes deadly.