FIBROMYALGIA WELLBEING
FIBROMYALGIA is estimated to affect around 2% to 8% of the population…
No accurate figures are possible, which clearly supports the need for more work to be done – on many levels, with this chronic illness. It is then estimated to affect around 65,000 people in this state alone!!
Dr Richard Kwiatek (an Adelaide rheumatologist specialising in this area) suggests that FMS is one of the most prevalent musculo skeletal disorders and accounts for approx. 25% of new referrals to rheumatologist specialists. Diagnosis can be drawn out and very complex, and its sometimes referred to as a CMI = Chronic multi system illness. Its far reaching syndrome of symptoms are greatly misunderstood, and bring impacts to the sufferer which are greatly underestimated by others.
Fibromyalgia is explained by Dr Jacob Teitelbaum, MD (an author, who is MY HERO) as - a short circuit that occurs as a result of a malfunction in the H-P-A axis, (hypothalamus, pituitary and adrenal axis). In simple terms, it occurs when energy demand exceeds available supply. The body then experiences a trickle like effect, and one poorly functioning system will affect the next….poor health, nutritional issues and deficiencies, infections, pregnancy/hormonal changes and other factors impact on the severity and symptoms. Therefore, lifestyle, genetic weaknesses (eg thyroid problems), ongoing significant stress and diet and nutrition are all factors to be considered. Symptoms may include - stiffness, widespread pain, unrelenting fatigue/extreme exhaustion, sleep disorders, hormonal dysfunction, increased allergies, brain/cognitive dysfunction (confusion and memory problems), anxiety/depression, infection and immune dysfunction, and reduced ability to tolerate and manage stress. All these symptoms occur as result of hypothalamus, pituitary or adrenal problems (mainly underfunctioning).
I will now move forward to how my relationship with fibromyalgia began…..
As many of you know, I have dedicated a large portion of myself and my time over many years – both professionally and in voluntary capacity – to helping others and supporting and developing community. Most recently, this club has supported my Professional endeavours, and also my voluntary involvement with DELTA SOCIETY, as a pet therapy visiting team – with my little dog `ANGEL`.
Some of you may be aware, that in April 2011, I reluctantly gave up my professional role – one that I was passionate about and greatly enjoyed. My health was becoming more of a challenge and I needed to make a difficult decision. My decision was to better support my health and well being, and also to try to restore some quality of life to our home and family life. Therefore, my resignation was submitted.
Although I was officially `diagnosed` with FMS in late 2007, I continued to work but this ongoing challenge continued to result in further decline physically.
My health issues began subtley, from around 2003 – when my daughter was 2 years old….however, things were not appropriately addressed and therefore remained greatly unmanaged and therefore greater strain and drain continued on my physical body, until mid 2007 – when I experienced seizure type activity, resulting in hospitalisation, low blood pressure, low white cell count and an underfunctioning body – on many levels.
Luckily for me, pursuing a second opinion at that time, brought some answers. Thanks to my wonderful GP, slowly the areas of poor functioning were addressed. Around 18 months ago, my GP began working along side a Naturopath, and this has enabled at long last some stable results and better outcomes that will hopefully continue to bring further improvements.
From early 2008 I required monthly blood tests, and doctors visits and slight changes to medications and other interventions followed.
I initially saw a GP, a rheumatologist, an endocrinologist, and for a while a psychologist and then came the naturopath. I was given a variety of medications and realised that more than medicine alone was needed to stabilise and improve my situation – so, a wide range of both pharmalogical and non pharmalogical approaches were used. I needed to restore the underfunctioning systems but also needed to aim for long term management and wellbeing.
For a while the term hypopituitarism was used, and replacement of all pituitary hormones began. This included hypothyroidism, secondary premature ovarian failure and adrenal insufficiency. For a while I also required daily injections of growth hormone, as I was told my levels indicated the physical age of a 70 plus year old, in terms of energy – and I was 39 at that time! Unfortunately for me - this is a very slow process, as stabilisation requires slow introduction and minor changes along the way. I guess that luckily for me, I was in a phase of denial for most of this time and as such, continued working and pushing myself through – as it wasn’t going to beat me!!!! This may have assisted me psychologically (to not give up), but certainly did NOT physically.
Sleep disorders were also of prime importance (more medications), and then nutritional deficiencies and infections were targeted.
I certainly don’t proclaim to be an expert, but I am pretty proud of how I have managed to get to this point. I have learnt a lot ! I have had to make changes and had to make new choices that reflected my needs and focussed on balancing the physical – psychological – spiritual aspects – for ME.
I have always had an interest in helping others and encouraging their empowerment. Luckily one of my strengths has been sourcing information and I`ve been resourceful by nature. I have had many many bad days… days in which others do not see me, and therefore this becomes an invisible illness and as such I have had limited support through this journey. It can be very easy to slip into victim mode, and get stuck – due to social isolation. But, I have constantly tried my best to turn this challenge into a learning opportunity for myself. I certainly needed medical interventions and support, and I certainly needed to remain open minded to different ways and approaches..
But, the biggest and most important thing to learn was that I needed to remain empowered, and remain actively involved in my own wellbeing. I had to support my own hopefulness and find my own inner strength.
So, when I felt that I had regained my control and enough physical strength – in September, I started to write.
I started to write something that I was looking for around 4 years ago but couldn’t find. Something that provided some encouragement and hope to others – not just with FMS, but with others facing challenging health issues or other problems.
Its easy for people to become victims and be defined by illness or life challenges. But, my motivation for writing has become about nurturing others and encouraging them to find their own strength, their own solutions and their own pathways. I hope that when they read this book, they feel hopeful and encouraged to become their own `specialist` - and most of all, I hope they may find their inner strength…the courage to continue to move forward, and take baby steps. To find their balance and move beyond victim mode and reach out to others that may offer useful support and strategies – to NOT GIVE UP.
I began writing this book on 24th Sept 2011. I wrote only at night time, and continued until it was finished….This was approx. 4 weeks later. I then sought 2 people (not too close to me), and asked them to read it and provide feedback. Their feedback inspired me on to the next step. I then looked into self publishing and decided this would be best, if I was serious about my story getting out there…even if only 6 people are helped by this book, then its all been worth it…If I can raise awareness within the community at the same time = added bonus….If I can then link people into other networks and supports (and therefore they continue to move forwards) – then this will ensure self empowerment and continued coping in the long term.
In mid November I submitted an article to a new wellness magazine – and this was published and circulated just last week !
Late November (2011) I created a facebook page `Fibromyalgia Wellbeing` and now have over 400 followers of this page…I share a combination of information that supports others with fibromyalgia in emotional, spiritual as well as physical ways. I now have others `sharing` and interacting on this page, and have received some great, positive feedback and comments reassuring me that this is making a difference.
I have the wonderful Jacob Teitelbaum on board, as well as my GP and Naturopath, and through networks and community links I feel confident that I have the commitment and passion to see this project through.
I NEVER THOUGHT I COULD CHANGE THE WORLD, BUT HAVE ALWAYS THOUGHT I COULD DO MY BIT TO CONTRIBUTE TO THE WORLD, and my own community – and this is reflected in my life history and character and integrity.
Through this book, and related efforts I hope that I can motivate others to find their own strength. To support them in remaining optimistic, and to therefore CHANGE THEIR OWN WORLD or indeed their `reality` with chronic illness.
I`m currently looking for sponsorship to enable me to have the total of approx. $1,600- needed for a self publishing package, that will launch this resource on world maps (hard copy and electronically). I currently have a short fall of approx. $900- and I hope you may be able to provide between $300- and $900- and then I am able to proceed with publishing! As we are now only on one income and self employed, I can and will continue to provide my time voluntarily to support this cause and others with this condition – but financially at this time, I am limited as you would understand. My family and some personal supporters are also happy to undertake or assist with any events, functions etc that you may use to raise any monies to support publishing!
I TRULY HOPE YOU WILL SUPPORT ME IN THIS PROJECT.
THANK YOU….
