My participation in the 24-hour 2012 World’s Toughest Mudder endurance epic was different for me…it presented an opportunity to help others…
To raise awareness for a little-known and widely misunderstood illness will inevitably serve to improve the lives of those inflicted. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969. This is a crippling condition that is too often a victim of misdiagnosis and a ‘cookie-cutter’ approach to treatment.
As my gorgeous wife, Marcelle, has suffered from this condition since 2003, this support and research gap is very close to my own heart. With her physical state worsening with each passing year, we have watched our mountaineering, white-water rafting, unstoppable health and fitness icon dissolve into someone who at times has been almost unrecognisable.
The illness is indiscriminant and has no cure. The 180,000+ Australians that suffer from M.E. do so with negligible support from Medicare and private health cover. As her condition worsened, Marcelle was forced to explore more alternative treatments in a desperate attempt to regain some capacity to function normally again. The specialists, naturopaths, blood tests, medications, supplements and scans are simply too high in number to itemise. Suffice to say that the intricate nature of this illness does not afford the luxury of a single treatment. After an extensive journey of trial and error, Marcelle only found limited relief in a combination of alternative and mainstream therapies which, in turn has completely dismantled the financial stability of the family unit while we continue to operate on a single income. We did so willingly as there is nothing that takes priority above of the health of our loved ones. From Marcelle’s perspective of a devoted mother and wife – and no matter how misplaced we know this to be – her sense of guilt is, at times, overwhelming. So many times confined to her bed and helpless, she has watched her two amazing children learning to cope over the years…getting themselves ready for school and sport, completing their homework without assistance and dealing with their own day-to-day troubles.
The lowest point was the separation of our family in 2010. As my working hours increased more and more to cover medical expenses and lost income, my ability to care for her suffered accordingly. The boys were great and helped whenever they could. Eventually, Marcelle and I reluctantly agreed the only way to get her the care she needed was to relocate her to Hobart (Tasmania) to live with her unconditionally generous mum, Alida. This meant Angus had to go with her and start at a new school half way through the school year….a difficult and truly daunting task for any 10 year old boy. To hear he was crying most nights was devastating…it crushed me. He knew why it had to be done but missed his Dad, his brother and his friends. Liam and I moved into an apartment where he grew up quickly and completed a crash course in How-To-Be-A-Good-Flatmate 101…a pretty steep learning curve for a 16 year old boy. Our combined cooking skills being what they were, toasted sandwiches, baked beans and BBQs were plentiful…only saved from ourselves by the devine intervention that is my mum. Cooking her heart out for us, Paula would send ‘survival packs’ with military precision. Every couple of weeks we would receive huge boxes from Tassie containing frozen curries, pies, soups, biscuits…even jocks, socks and t-shirts were thrown in occasionally! We lived like this for six months. The silver lining of this dark cloud was to see Marcelle return in much better shape than when she left…a testament to her grit and determination as she refused to give in and continued to explore treatments….searching out the best possible combination for her. She is one tough little unit….in her prime, she would have smashed these Tough Mudder events.
While she is generally stronger now and with a more stable treatment and nutrition regimen, the relapses continue without warning. They can range from 24 hours to 10 days+…the timing can be random, undpredictable and cruel. Yes, we are thankful she is improving and although will most likely never experience her “old self” again, she remains defiant, positive and beautiful. On the occasions she feels great (translating to “normal” for you or I), I am truly thankful to have my wife back again…laughing, joking and energetic. Within her limits, we try to make the most of these times.
It is important to remember that this is not about us…it is about the 180,000 Australian families enduring severe hardship in silence, unable to locate support or a solution. The objective of this site is to use high profile adventure races as platforms from which we can raise awareness so others may possess a much better understanding of the illness and what it means for those affected. For some further insight and perspective into what life with Myalgic Ecephalomyelitis means, please take the time to watch this video. From our own experiences, it saddens me to assure you the information within is not exaggerated…
Time for you to dig deep.
I am again hoping our story provides you with an opportunity to make a financial contribution to a very worthy cause. ME/CFS Australia is a not-for-profit charitable organisation dedicated to providing information, support and advocacy for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome community. The vision of ME/CFS Australia is to be an organisation which has a significant and positive influence on the wellbeing of people affected by ME/CFS. To contribute a tax deductable donation, please follow the PayPal DONATE link at the top of this page. Alternatively, please feel free to contact me via email for EFT details and a receipt.
In the lead up to the World’s Toughest Mudder 2012, I was astounded at the generosity and general willingness to help from family, friends and complete strangers. Together we made a difference and provided ME/CFS Australia with desperately needed funds to enable their on-going care of those who cannot care for themselves. This, however is not the end of our efforts, but only the beginning. Every single donation helps.
From the viewpoint of personal gain, I am also hopeful this on-going endeavour shows our two resilient boys, Liam and Angus, that life should be enjoyed to the fullest…that their own passions and goals are to never be confined by conventional nor geographical boundaries. Get out there! Get in amongst it! Get dirty! Laugh! Go again!
(keep an eye out for my own nervous smile at 2:53)