Well..
The next chapter begins. .A new version of self advocacy and a continued challenge.

Perhaps a challenge that I'm better prepared for,  after the long and soul awakening journey with fibromyalgia.
None the less an undoubted ambiguous journey once again.

A few weeks ago I received another new diagnosis. This one being BIG and terrifyiing. One that I'm still struggling with. To understand; to experience a range of emotions and then accept.
This process may take me years but hopefully my acceptance will come before the condition takes hold of me.
I have good minutes and bad hours but will hopefully be able to turn those to complete opposite realms.

The new diagnosis is completely left field - out of nowhere and has hit me like a sharp slap on the face. A complete game changer. Changing absolutely all aspects of my life, future directions and dreams. But, it cannot be for nothing.
My challenge is to make this experience have a meaning and some value and again I plot a new course. Charter new territory.

Brace myself,  prepare myself, stay strong, educate and empower myself and others and learn and grow .
But biggest challenge is to accept... to make my life hold value - to count for something.  Make peace with it.

Become friends and look that fear shit straight in the eye and let it know I have no plans on allowing it to win without a damn good effort.
I will put up a fair fight. I may not win - but by who's definition? ?

This neurological condition will take many things.
Being progressive and a degenerative cerebellar disorder its cause is cerebellar atrophy through unknown reason or cause.
But its here to travel with me and no doubt change me further .
There is no medical treatment nor cure.  But I assure you I will plot my own treatment and forge my own path.

As much as I wish it was far different - challenge accepted.

Let's go....

I havent written in here for so long that I cant remember how it all works but want to start blogging again and sharing my next chapters.

I believe in supporting one another.
I believe in contribiting to raising awareness and following a common cause and lastly I believe that knowledge is power.

We never stop learning or growing.  We meet others along our way.
We stumble and fall sometimes but with strength we return to the plight and commit to going forwards once again.

Much has changed in my break from here. . And yet little has changed

Here begins the next chapter. ..

Riding The Waves into 2016

Well, It`s been a while.....a few waves have hit, as well as a few freak tsunami`s along the way.

Since I have posted here, life has unfolded with many twists and turns, much personal growth, amidst pretty significant life changes last year (2015) - as well as a year filled with flare ups and ongoing acute illness episodes.....But. here WE all are. In this moment!

I intend to start sharing again, and updating on here as to what is happening and what I learn along the way. What I learn about my health, the complexities of Fibromyalgia, the ongoing shift in my healing focus and that road to wellness that we continually aspire to and work towards - not just those of us with FMS...Most importantly I intend to share what I learn about myself along the way, and what others` share with me about their travels with FMS and related issues and illnesses.

Last year, 2015 was a BIG year and it seems many people faced challenges of their own. Rather than dwell on specifics (and get bogged down with specifics), I prefer to always look for the light - to search for the silver linings and those that have been with me, since the book (back in 2012) will understand this....and hopefully relate. I will say, however that it was THE most difficult year I have faced, since early FMS days that overwhelmed me back in 2007, 2008 and 2009 (and explored in the book).

2015 was indeed a year that I faced many changing realities. In many areas of my life. It was a year that amidst the depth of changing circumstances I plunged to rock bottom - more than once. At times I didn`t feel that I could continue, and I felt utterly broken. However, the silver lining - forced from necessity, was that `I had to ask for help`. More to the point, I actually had to accept help. There was just no other way. It was a year that forced me to question ALL aspects of my existence, and at times I couldn't see a way through and didn`t think I could forge one or make one either. It was overwhelming beyond measure and stressful beyond comprehension.

If I was to say what one thing actually did get me through and stop me from falling further into darkness - I would say the `fibro community` and friends that I had made, through doing the book, the support groups, the page and the connections that had been developed locally here in Adelaide. If there is one thing that YOU all must do and must have, is support.. Develop support networks and find your `tribe`..Understanding and people that really get `you` and can miraculously appear and shine a glimmer of hope and light, when as an individual you can no longer do this for yourself. The ones that appear with food, and send messages and understand the underlying tones of your facebook posts....and stalk you and find ways they may accidentally come into your path - because they know you wont ask, and you will isolate yourself and you will avoid them as things are so dark that you do not wish to tarnish ANYONE.

We all know that we need balance in our lives - that we need to surround ourselves with people that inspire us and that we aspire to. We won`t fare very well if all our friends are unwell especially if they are all crashing at the same time. Indeed, too much sickness, sadness and negative emotion needs to be carefully managed. However, sometimes we don't want to be inspired and we don't wish to aspire to anything OTHER than being able to get out of bed...or maybe - have a shower! For just a few months - luckily for me, my fibro networks knew how serious the situation was - and pulled together - and it was ALL and I say ALL - was about me. There was no other way. I needed to eat, I needed to get to Doctors/medical centres, have tests done and wasn't capable of much. It was a scary time.

I know this story rings true for many. Some for short time and some for longer time. Largely depends on the severity of the illness, as well as emotionally what else is happening in our life. I dropped the ball.... But, thankfully the ball rolled - and others were able to bring it back to me. Along with food, transport, practical support, hand holding and a whole lot of unconditional and heartfelt love.

So, that being said - I am sure I will continue to draw on some of those situations as things unfold here and I continue to share. Its too much (*negative) to express in one post and I still have much to work through emotionally due to all the changes and this is still a work in progress.

Reflecting and prompted by my decision to start writing here again - I found something I wrote back in June 2013. I wanted to share this - because its surprisingly very wise. I read it again and see that really nothing has changed in regards to this list. The last year has in fact brought all of this back into the forefront. ALL very relevant.... As well as simple key things to ponder, no matter where you may be in your journey with Fibromyalgia Syndrome (or related illnesses/conditions). Nothing that will make the road paved, with neat gutters and lights at the sides or fill your ruby slippers with the good stuff..No magical answers. But simple ideas to consider putting into place. Ideas that have underlying tips for living a more grounded life with the challenges that we may face. To help ride the waves and maybe even avoid the most dramatic of tsunamis. This list has again brought me back to my centre... Different - and yet the same stuff over and again...Different layers but same stuff.

GRATITUDE - top 10 that I am thankful for whilst living with Fibromyalgia - June 2013.

 

10/ Building partnerships with Practitioners/Providers that have been equal, caring, supportive and respectful. Grateful for the Practitioners that have crossed my path and continue to be a part of my future health care team.

 

9/ TIME to live in the moment, with deliberate notice of the many things around me. To get to know myself better. To accept that change is a part of growth.

 

8/ Perspective to realise that this is MY challenge, and the gratitude to appreciate that if it was not this, then it would be something else. To surrender and learn to go with the flow, and to accept things I can`t change or have no control over.

 

7/ Opportunities to think about and do things I would never have anticipated. To focus on health, nutrition and ALL aspects of wellbeing.

 

6/ Increased problem solving skills that have been necessary to consider events and activities that many others take for granted. Anything is possible - sometimes I just work harder to create the solution.

 

5/ Appreciation of little things and reaffirming that it is indeed the little things that may well possibly be the better things. The importance of gratitude in remaining positive and optimistic!

 

4/ Patience with myself, living mindfully and with conscious awareness. I am doing the best I can at every moment in time.

 

3/ Appreciation of boundaries with the realisation that these are critical and were non existent. Accepting that I have the right to say NO without feeling guilty, to change my mind and listen to my body. 

 

2/ The Healing Journey that has taken me into new networks, new worlds, new ways of thinking, new learning and new friendships. One that has enriched my personal understanding of the importance of balance. Prompted me to get to know myself and increase my self awareness and insight. Strengthened my spirit and allowed me to be proud of myself. Prompted me to seek out nature, strive for balance and peace of mind together with a deep appreciation and acceptance of the person I am and am Becoming.

 

1/ SELF love, which underpins SELF care which is essential for respecting my own needs and a valued part of empowering ones self. Taking care of myself and my needs is not selfish. I am important and my health care and wellbeing is my job, and I have to respect and value myself enough to continue to move forward. Trust, believe. I am enough, I am loved, I love.

 

******************************************************************************

 

All of the above were written at a time when my struggle with Fibromyalgia Syndrome was in accepting the changes and trying to move forward whilst adapting life and working on the physical aspects.

 

Through this last year much of it is relevant for other reasons... Number 1/ (`SELF love`) is of priority to me also this year personally, in my whole wellbeing. My `self love` is right at forefront, and of utmost importance - and you will be hearing more about this aspect specifically, in the near future.

 

Wishing you rainbows and the gentlest of hugs. Until next time,

 

Much Love and Many blessings -

 

DEE

xxx.

New Self Awareness

Does self awareness help self management ??

The first time I attended a self management course (for people living with chronic conditions) was when I was first diagnosed with fibromyalgia in late 2007 – after declining health had been a part of my life for around 6 years prior. That self management course was very valuable and provided me with some sound strategies for coping, some friendship and validation from others travelling similar journeys and some self awareness and insights. Undoubtedly it helped me through a very difficult time in my life.

However, it was only after becoming increasingly unwell and coming to a rapidly declining place in 2011 that I actually started to put into practise some of what I had learned. The first step for me was making a very tough decision to leave my employment. The next step was encountering on some restoration of health, and to `focus` and work on the things I needed to do to stabilise and better manage this condition that is fibromyalgia. The next step was writing my own book `Fibromyalgia Well-Being` and through this step came some deep healing and peace at an emotional level, together with the realisation that I needed to start actually implementing some of the things I had learned around 4 years earlier – through that self management course.

However, it was upon embarking on another 2 week self management course via LEAP SA just recently in February 2013 (`Knowing Emotional and Physical Pain`) – that I had an `ah ha` moment. You could say a moment of enlightenment and one that clicked on the switch to an even better sense of self awareness and understanding, which I believe will only better assist me with my long term coping.

We all know the benefits of evidence based research, and the power of becoming better informed about our condition. We know that knowledge can greatly assist us in understanding and accepting our new `reality` with chronic illness and allow (and enable) the changes that arise from necessity.

However, although the self management strategies have good support and research from people `in the know`- I often feel that the power of human connection is often underestimated. The power of participating in such workshops – delivered by others in a similar situation – is enormous. Also understanding that there are limits to what we can learn and control on a physical level. I am not saying that I am psychologically unbalanced BUT I suggest that I was underestimating the importance of knowing that another important key – is to become aware and understand (and work with) the `illness burden`. That is, the level of impact and interruption on our lives. WHAT this condition and the symptoms and impacts mean to us as individuals. AND what we can change ourselves – to make things a little better – as this is our own journey. That is the bottom line – and if we can then progressively work with this – we become more successful and resilient. We can only do this properly through a guided and structured self awareness process. There are many elements to coping well (physical - psychological - spiritual) and enhancing our wellbeing.

Jenny and Viv (from `LEAP SA`), certainly walk what they talk. They give great testimony to how better self awareness can support self management - and in turn, can influence our coping in a positive way. They demonstrate this through their own lives and share their experiences ON a human level. They inspire the participants and through connection, a warmth and spirit of open ness fills the workshop.

Through exploring aspects of emotional and physical pain and the impacts of these – the participants are able to slowly unravel their confusing time and begin to develop better awareness of their individual self. To be honest, I thought that the course would be informative and I remain open to learning and self development every day. However, I did not think that I would experience such a deep level of personal healing, this (second) time around.

After feeling validated and understanding more about pain, and exploring the connection between physical and emotional pain – I was able to ponder some very valid and interesting concepts of myself, that had been discussed. As we further discussed and shared of ourselves, I began to consider a very important concept for me…… On the one hand, not really related to the condition BUT very much related to how I COPE with this condition and live out every day in managing my condition. I was now in a different place to where I was when first doing a course in 2007. I was at a different place in my personal cycle of acceptance and grief.

I believe we all have `fears`, and usually we have a whole suitcase full of fears and we carry them around often unaware (sub consciously). I hadn’t really given this much thought. But, what was my biggest fear? What was influencing my behaviour and therefore impacting on my management – and my life?…. I pondered this for the following week. Well, there are usually multiple fears -  lack of finances, rejection, uncertainty, death, further loss of mobility and loss of lifestyle, relationship changes etc. We all have a bit of all of these.

However, upon deeper reflection I worked out that my biggest fear, through conditioning and continually feeding through my behaviours and thoughts – was my deepest fear of `not being good enough`. This simple belief had so much influence on my self esteem and self image and therefore, played out in my day to day behaviour(s). I even googled it on the internet - and there is an actual name for it (of course).

I am not saying that I `blame` anyone for perpetuating this belief. I am not even going to `blame` this way of thinking for my health issues. I am here NOW and this is where my point of power lies. But, I can now see where the patterns are (were) for ME.

Growing up = I need to try harder, work harder, I need people to like me, I cant be myself as I am not good enough, I don’t know enough, I don’t deserve love, I cant learn, its never enough, people wont like you, life is hard, push, push, push. I impose what I `think` are the epxectations of others and strive hard to not only measure up BUT go beyond these `expected expectations`. I perpetuated these thoughts and although completely unaware they drove my behaviour to some extent. Even when I was learning to manage and cope with fibromyalgia earlier on. This did not make me unwell directly BUT undoing some of this, can better assist me NOW and into the future.

If you have read my book (`Fibromyalgia Well-Being`)  – you would remember that I did begin to change these behaviours, though not knowing why. I began to reinforce to myself that I am worthy, that I am a hard worker, that I can have good friends and good things and experiences, and that it IS enough. To BE instead of DO has become a theme – though it was initially challenging. I began to acknowledge that I am a good person, and that to do my best is enough. I don’t have to push myself and be that people pleaser. I reinforce all of this on my own daughter now.

So, the biggest learning for me – this time around is that fibromyalgia has prompted me to face some of my fears – and through doing that we become even more powerful and enlightened. We can work WITH instead of against. We can learn new ways and better ways to cope. We can change. Change is good……Instead of viewing the negatives framed as `losses` to turn this around into `changes`. Neither good nor bad – just a different view or perspective. I made changes because I had to BUT now can see `why` they may have been there to begin with.

So, although I have fibromyalgia, its my awareness of how this affects me on a day to day basis (especially my thinking) that shape and influence my self management. Only through exploring this and unravelling our thinking and alleviating some of the stress burden (real and perceived) that we begin to see clearer. `KEAP` enabled us to be guided systematically, with TLC and bring us to the point where we may begin to understand how we may have some power over our perceptions and understanding. And also that we can challenge some of these and perhaps live a little easier with improved long term management.

I am so glad that I had the opportunity to attend this KEAP course with Jenny and Viv. As well as providing me with inspiration, renewed hope and encouragement – they also provided me with the space and opportunity to do some introspective exploration. I will make sure I revisit these modules and learning from time to time. Its important and valuable, when we have long term chronic conditions, or other life challenges.

I thoroughly recommend and suggest that others choose to participate in such learning – about themselves. I encourage others also seek the opportunity to draw on the modules, training program and information BUT most importantly, enjoy the experience that comes with being amongst peers within a mutually supportive environment. To remain open to exploring ways to improve your own individual situation – no matter what the circumstances! My heartfelt Thanks to Jenny and Viv , for all they offer and give to others.

The outcome you may experience from participating in such a workshop/course will assist your wellbeing and maybe even your outlook on life. Not a cure in itself, and not `the answer` (maybe a reminder), but definitely an important piece of the management puzzle. It was the supportive environment, the practical learning, the sharing, the exploring, the problem solving, the encouragement, the self awareness AND the way in which the content is delivered, and the shared experiences and genuineness of the group leaders/facilitators that provides the whole very very useful and worthwhile package. :-)

Awareness event, TTG library 1st Dec 2012

CITY OF TEA TREE GULLY LIBRARY _- SPEECH DELIVERED BY DEE about book `Fibromyalgia Well-Being`.

TEA TREE GULLY LIBRARY – 1^ST DECEMBER 2012.

Thank you to all of you for coming along today. I acknowledge that many of you here with may have travelled and/or overcome many challenges to come and be with us today!

A few of you have already read the book, and some of you are personally known to me, but I`m sure most of you are still a little perplexed about what is called `Fibromyalgia Syndrome`.

I`d just like to take a quick detour to introduce FMS, as it is the basis and purpose of my book.

FMS may be described as a multi dimensional pain disorder or chronic multi system Illness – with many others symptoms including (but not limited to) – sleep disturbance, non-restorative sleep, fatigue, musculoskeletal stiffness and cognitive dysfunction. It`s estimated to affect approx. 2% of the population – in SA its estimated to affect 65,000 people – of all ages, both men and women. Symptoms often fluctuate but generally people experience widespread pain, sleep problems and extreme exhaustion.

`FMS therefore involves the whole body and potentially throws all kinds of things out of balance. It can take someone who is tireless, hardworking, educated and ambitious and rob them of their ability to work, clean the house, exercise, think clearly and ever feel awake or healthy. The symptoms that result from widespread dysfunction in the body and brain are hard to understand, difficult to treat, and thus far – impossible to cure.`

By the time diagnosis is received – a multi layered, multi dimensional approach is needed, to address the many complexities involved.

When I was at my most challenging time, almost 6 years ago – I really wanted to connect with a book like `Fibromyalgia Well-Being`. I wrote the book in part to fill a void. Once I talk a little about my background – then you may better understand my other reasons for wanting to write this book.

I have a background spanning over 20 years in voluntary work, mostly in community services. This has been in a range or settings and roles and also Professionally for the last 17 years. I have a passion and interest in `community` and participation in community.

I believe we all have strengths and we all have the capacity to contribute to community – no matter what our skills, financial status, abilities or backgrounds. We all have something to give, no matter how small we may think it is. Together, we can make a difference.

Through my work over the years, with people with disabilities and Carers I have also had another passion strengthened. This is SELF advocacy – and empowerment. Whilst I don’t attest that I can change the world – we each have the capacity to add to the ripple effect. I can contribute to the world, help people become motivated, encourage them to find their own strengths, support them to remain optimistic, and therefore – change their own world. So, this project has a few aims but one of them is to encourage people to become empowered – thus, make changes within their world – and impact on their reality with chronic illness.

The other main motivator was about raising awareness in regards to this condition – to work for better outcomes for people with FMS. To help improve awareness and understanding, to help inform interested others about the condition – with the hope that they may better understand how life is for us. To create discussion and some improved validation for all of us. I hope that the book will do its bit to raise the profile within our community (and society) of invisible illness and conditions.

Personally, I have tried to focus on what is out there and available and improving solutions. Striving for progress, rather than focussing on shortcomings.

Through my own life, whenever faced with hard times or challenges – the people I most look up to and admire are those who have endured and faced challenge, overcome adversity, battled illness or hardship, crisis etc BUT these role models have the most amazing life stories. In the process of becoming a person that has come out the other side – they have shown strength, grace and amazing character. They haven’t found any miracle cures BUT just shared how they had done their best to get through, whilst somehow learning so much about themselves and becoming a light that shines on others; providing encouragement and hope. Their positive attitude has added to their ability to cope and their resilience. What I discovered through my experiences with FMS, is that no one had really shared their story. Lacking in my searches – were other real life experiences being shared of this incredible challenge called FMS.

In April 2011, I gave up a job I loved and whilst I knew it was necessary – I felt `lost` for a while – but also did much evaluating regarding my own health and management. It was a time of acceptance.

A very wise person, whom is here today, met with me approx. 5 months later and said something quite important to me. This person suggested that when the time was right, the next part of my journey would begin. The next thing would present to me. And, it did.  However, at that time I had no idea what this next `thing` would be. I had never really seriously thought about writing my own book, but around 4 weeks after this discussion, almost overnight I decided to start writing. I started writing something that I felt would have been of benefit to me in the years prior. Something that was lacking and I hoped that what I was embarking on – would have the capacity to make a difference. That by sharing my personal experiences and honest reality, with this condition and the myriad of symptoms that go with it - may help others within their own reality.

I have now managed to get the book out there, after a very reaffirming and successful launch in July 2012 – and I now intend to use it as a tool. To use it as fuel to support the vehicles that are currently becoming strengthened and moving forward, and continue to work for our collective benefit.

I consider myself to be like a `bridge`. That I can use this book as a tool and do my bit and build on and support the other things that are happening. To ensure I work positively towards supporting others whilst also raising community awareness and understanding of FMS. The book is my way to get people talking about the condition and their symptoms, to better participate in their own health care. To also provide the individuals with validation, some comfort, some reassurance. To facilitate connectedness amongst people who may be struggling within their own situation.

The feedback I have received thus far, about the book- certainly supports these aims. It indicates strongly that people `connect` to my experiences and frustrations. They feel validated and encouraged and they resonate and relate to `my story`, which is actually the story of many.

I am NOT advocating that people follow my treatment(s) or journey. But rather to make some changes that enable them to feel more encouraged. To reaffirm that things can be done to manage and stabilise their condition and symptoms. Although, `managing` does still mean having bad days – but it`s about accepting these bad days without becoming defeated. Bad days with FMS will occur, because by nature of the condition – there are influences and impacts that we cannot always control (like weather, environment, chemical exposure etc) – but perhaps we can `learn` how to minimise the effects.

We can start to empower ourselves and get this information out into the community. I intend to become a stronger `change champion` in various ways and better support the vehicles working hard for improved outcomes. My condition, my own management, wellbeing and my current life may create restrictions and limits, BUT there are things I can do and intend to do. To help better support the newly diagnosed and the people who continue to struggle, or feel disempowered. To try to make this path a little easier for them, with less bumps and twists and turns.

QUOTE – `Edward Everett Hale`.

I am only one, but I am one

I cannot do everything, but I can do something

And I will not let what I cannot do

Interfere with what I can do.

Empowerment is more likely to produce more positive outcomes and thus more positive emotions and this increases confidence within our situations – this is so much better for our health than disempowerment!

I have been pleasantly surprised by the people in my own networks that have started talking about fibromyalgia – me included.

In the past, when struggling myself – I couldn’t talk about something that wasn`t understood or validated – and it also didn’t help that I didn’t understand or validate it myself. I felt disempowered and often helpless. I often thought I was going crazy and I often gave up in despair. I don’t even suggest that what I tried, what I had success with, what worked for me – will work for you.

But, I DO suggest, that if you learn about your symptoms and your condition – you will become more informed to make choices for your own long term management.

And also by addressing the physical – psychological – spiritual parts of YOU, you will become more stabilised and you will begin to feel more in control.

I hope that you will come to understand that although there is no cure – there are many ways to address the symptoms and cope in the best way you can. There is no quick fix and there is no magic pill BUT hopefully you may feel connected to others and thus more positive and continue to take the baby steps forward in your own acceptance.

Consider the diabetic – who may need medication and intervention. BUT for effective long term management they may also need to make lifestyle changes to best support their long term management and to avoid further deterioration. To stabilise their condition – they may also need to make other changes – diet, exercise and other adaptations.

A person with a chronic back injury (maybe as result of an accident or illness) and living in chronic pain may need pain intervention BUT to also live and function at optimal level, they may also need other interventions. They may need adaptation of their environment, changes to the way activities are carried out and adjustment of what activities can be managed without further detriment. They need to maintain a positive focus on ABILITY.

FMS is no different – however, we currently face many complexities! We need to also consider lifestyle adaptations, exercise techniques and other influences. We need to learn about ourselves and how the condition impacts on us. BUT we don’t need to struggle on alone!

We are all different – in the way we experience the condition and symptoms, the care we receive, the support we have, how we cope and the choices we make to manage our health care and needs. We are different in the backgrounds we have, the life history we have travelled, the pre cursors to the illness, the triggers, the onset, the diagnosis process etc etc. BUT, the common thread we have to each other is our capacity to understand and show empathy and compassion. Universally, we feel the same things, although it may be in different sequence or order – but, generally the same feelings – and we connect to each other’s` stories.

So, I hope that the actions behind this book will continue to make an impact within society, within my own local community and within your networks. I hope it will continue to support the other vehicles and work towards progress and change – for better outcomes for all of us. I hope that discussion about FMS will continue and the people living with the symptoms continue to be heard. I hope that people who are the family, friends, carers and support networks may be guided by reading and sharing my experiences. So, they may better understand our reality and therefore better understand their role in relation to supporting us.

BUT, I hope this book also assists the people that travel this lonely, confusing and often challenging road. The road that often includes many ups and downs, unexpected twists and turns, many mixed feelings including grief, sadness, despair, disappointment, helplessness, confusion and frustration – just to name a few.

This is a road that is shared by those of us living with not just fibromyalgia syndrome but also other chronic conditions – often invisible, isolated, tired and overwhelmed.

I hope you gain something from connecting with my story and shared experiences, and feel a little more empowered by travelling with me!! I hope you understand that self management does NOT mean struggling on alone, lonely, and isolated. Self management does mean finding the right networks and interventions that can support you to gain control in your own situation.

I hope that you are able to start putting the pieces of your own situation together, through being in control of your healthcare `team`.

Along the way and as part of this project – I created a facebook community which now has nearly 2,500 people connected. Then recently came the newer sister page called `Supporting Fibromyalgia Champions`. The latter community was created approx. 4 weeks ago and the catalyst for this was a drastic and sad personal story of another person living with complex health issues. In a nutshell, the new page enables people living with FMS and closely related and often overlapping conditions – ME and CFS to promote their ventures and business pursuits or creative outlets to others. Often people have needed to re create some financial opportunities, or become financially desperate as result of chronic illness and need to find new ways to be able to afford the bare necessities. Supporting Fibromyalgia Champions provides a link to their own facebook page and whilst it doesn’t recommend products, it supports them in their pursuits. On the other side of the spectrum, it provides others who may be housebound; bed bound and/or isolated by their own condition some easy shopping options on line – whereby they also support others living with similar health and financial issues and limitations. Inclusion on this platform is by recommendation, invitation or application ONLY. I also have a `expression of interest` page here today and if you have a facebook page (not webpage) that meets this criteria, you can list your name, relevant info and page details and I will follow up in coming weeks.

What may come next is a local support group – here in Wynn Vale – as it seems there is definitely enough interest….registration of interest is here today, as is some other information that may be useful for some of you.. I am also learning each day – I don’t profess to know everything and continue to be challenged in this regard. BUT I have another passion which is sharing what I do know.

I hope that there is some value in providing you with some information that I feel could have been useful to me, but at my darkest days – did not have access to. Hopefully some of this will assist your situation in some way.

I Thank YOU for coming along today and hope that you feel a spark of hope from this project I have undertaken – for this cause!!

I also have some other Thank YOUs –

TTG library – esp Caroline Bates who has been the person holding main responsibility for todays event and I thank her for her support to me, over the last few months.

Suzanne, Brooke, Cassie and my own daughter Chenoa – for helping me out and doing some of the little jobs that add up to big bits…and for helping me with the money soon.

I also Thank those of you who have helped promote today and done any distribution of flyers etc in weeks past. I thank those who have been involved with this project from the start and have continued to support me in many ways..to have people believe in me and what I am striving to achieve is something I appreciate and treasure.

Most importantly, I thank you all for coming along today and I feel quite sure our paths will cross again and this connection will be long term.

Please stay and chat with others, have some morning tea or feel free to purchase a book, which I will be more than happy to sign for you. THANK YOU, and take care…

BOOK LAUNCH `FIbromyalgia Well-Being`

Well, the book has hit publication and is now available!!!....I have not been entering on this blog as things have been hectic, and I also have the job of maintaining my own health and wellbeing...so, today for those who are interested, I am transcribing my speech from the book launch.

The book launch for FIBROMYALGIA WELL-BEING was on Saturday 14th July, at Walkerville Library. There were just over 80 people in attendance - including 3 elected members from City of Tea Tree Gully and Mr Tony Zappia (Federal Member for Makin electorate).

Here is my speech, an intro to the book and enough about me to describe my underpinning motivation for writing and self-publishing the book............................................

Today we are here to allow me to introduce my book entitled `Fibromyalgia Wellbeing`, which adopts a physical – psychological – spiritual view, based on my own experiences with FMS. After struggling for a few years with poor health, and then an `official diagnosis`, I realised I had nothing to lose and possibly much to gain by adopting a wider view. One that embraced pharmalogical and Non pharmalogical interventions and I share these experiences in this book.

The book was undertaken as it will hopefully fill a void. When I was at my most challenging times 5 years ago, I really would have loved to have been able to connect with something like this, as well as many of the resources that are now becoming more widely available to us.

This time last year I had no idea I was going to embark on this project as I have never undertaken anything like this before. The most challenging part has certainly been the last 5 months, in getting through and completing the production stages. The writing was the easy part!

I have a broad background and passion in community services which began around 18 years ago. This has been demonstrated through both my Professional work life and also through the wide range of volunteering and participation and interest in `community`. I believe that WE ALL have strengths, and therefore the capacity to contribute to community and assist each other, and participate in `community` - no matter what our skills, background, abilities or financial status – we all have something to give, no matter how small – it is never wasted and ALWAYS well received. Together, we can make a difference.

I have had the absolute privilege of working alongside carers in our community – and have been inspired by these wonderful people, and learned so much from this amazing people, who truly are pillars of society in the very important role they undertake. Through working with Carers I have also developed and built on another passion – often resulting from necessity – which is advocacy.

I`ve never thought that I could change the world, but have always believed I can add to the ripple effect. I can`t change the world BUT I can contribute to the world, and I may be able to assist others to change their world.  To try to motivate and encourage others to find their own strength. To support them in remaining optimistic and to therefore to change their own world or indeed to make positive changes with their reality with chronic illness. This is my view of the word `empowerment` and this is one of my motivating forces.  So, as part of that I now stand here today with much pride!

So, first off, a little detour from the book…. – what is fibromyalgia syndrome?

In brief, it may be described as a chronic multi system disorder, which actually affects approx. 2% of the population – in SA its estimated to be 65,000 people. It occurs in all age groups (even children), and effects both men and women. The symptoms are chronic but fluctuate. It is NOT a psychologically based condition, although our state if mind can be challenged and negative reactions in this regard – may result.

I have extracted these words from my book `FMS therefore involves the whole body and potentially throws all kinds of things out of balance. FMS can take someone who is hardworking, educated, ambitious and tireless AND rob them of their ability to work, clean the house, exercise, think clearly and ever feel awake OR healthy ! Its not burn out, depression, laziness, whingeing, or psychologically driven. It IS the result of widespread dysfunction in the body and the brain that is hard to understand, difficult to treat and thus far impossible to `cure`…`

People with FMS generally experience widespread pain, disturbed sleep, and extreme and exhaustion.

The long list of symptoms may include –

Pain (muscular aching, throbbing, shooting, stabbing, intense burning), stiffness, fatigue (which can be incapacitating), memory and concentration issues, sleep disorders, IBS, exercise difficulties, chronic headaches, jaw pain, chest pain, PMS, shortness of breath, burning mouth or tongue, skin sensitivities and/or rashes, dry eyes and mouth, dizziness, muscle weakness and balance issues, sensitivities to smell, loud noises, bright lights, certain foods, inability to tolerate some medications. The symptoms may be aggravated by changes in weather, cold or drafty environments, stress, depression, anxiety and over exertion.

Often, by the time diagnosis is received – there is no magic pill or solution – as the physical system is in need of a multi layered, multi dimensional approach in order to address the many complexities involved.

The primary goals are usually pain management and relief and sleep improvement and mostly a combination of approaches, interventions and lifestyle changes are needed.

A big part of why I decided to write and publish this book, was also about awareness raising in regards to this condition. To inform interested others (family, friends, carers etc) about the condition with the hope that they may then better understand how it is for us. I also hope that this project and the process will raise the profile within society of invisible illnesses and conditions.

Invisible conditions may include –

Lyme disease, Gulf war illness, Multiple chemical sensitivity, POTS (postural orthostatic tachycardia), alzheimers, addisons disease, autism, Asperger syndrome,  lupus, epilepsy, multiple sclerosis, diabetes, renal failure, chronic pain, mental illnesses, psychiatric disabilities, coeliac disease, crohns disease, food allergies, metabolic syndrome, rheumatoid arthritis.

And we can also add to this list FMS and also Chronic fatigue Syndrome and these conditions are my primary reference and topic today. They are termed invisible conditions, as one would guess – they cannot be seen. But, also the latter two can fluctuate and can be hard to recognise and understand. Invisible illnesses and conditions may often include some degree of disability and limitation, and thus may disrupt normal daily activities, and may also result in reduced functional capacity and impaired quality of life.

Thus, at times the person enduring the chronic illness or condition, may also be invisible.

That is -  not present.

Often they are only seen when they are well enough to be seen and actively engage and participate in `normal` and everyday activities.

Often, the people dealing with the symptoms and challenges spend a lot of time housebound, or even bed bound – and feeling as if they have been forgotten, and invisible. They may be well enough to be present and seen for days, even weeks and sometimes a couple of months.

However, often to enable this functional status, they need to work very hard at their health management and indeed this level of functional status may vary between each person and is dependent upon many variables.

For some – being functional may mean being able to get up in the morning, have a shower and have breakfast. Then, after resting they may be able to do a couple of chores and then rest, and if they are lucky – even some shopping. For a few, life is severely limited.

For all, the work put into their health may look to an outsider like they are taking care of them selves. But, all this effort and care – may be needed just to remain minimally functional and able to do the bare minimum in regards to self care and daily living.

Being functional does NOT mean they are `well` or better. And, most importantly for most it doesn’t mean engaging in a reasonable quality of life. Some people are able to work in a part time capacity, and may have some quality of life. A few may work full time and have therefore, very little quality of life.

Some are not able to work, and their quality of life impact is that they become affected from NOT being able to work AND also due to the severe limitations and restrictions caused by their symptoms. They may do all the `right things` and still their bodies may not be able to cope.

We may struggle to continue to remain functional, let alone `participate` in life.

Sometimes, we focus on and work hard to achieve good self care and do many things to remain functional, but unfortunately life circumstance means that we cannot control every situation and environment. We may become invisible and non functional as a result of different factors , that are beyond our control – such as environmental sensitivities (lights, noises), chemicals, perfumes, odours, weather, rain, cold, food, and of course any other life stresses that nobody has control over.

To give you some idea of how these ongoing and unrelenting symptoms impact on our lives - In my case, my functional capacity or ability has been greatly reduced – and I adopt many interventions and strategies, but at best I only achieve around one sixth of what I was capable of around 12 years ago. What I could do in one day, now takes me three days, and it involves many elements of self care and health management as well – to get through that.

It is widely documented regarding the importance of quality of life on our overall wellbeing. Thus, if we cannot maintain a satisfactory (let alone minimal) quality of life THEN our psychological and spiritual wellbeing may be affected. This is universally true of all people. If we are unable to participate in community life, engage in recreational and leisure activities which support our quality of life – then our wellbeing requires more attention or we are at risk of further psychological stress and detriment.

Today is not the environment or place to talk about the issues and challenges we face with this condition from a clinical or medical perspective. I will leave these matters to those more qualified.

However, I personally believe that we have some key people in the right places here in SA. These people are striving to improve the medical care and intervention for people with FMS. We must all continue to support and respect them, and trust that they are doing their job in the best way they can – with the resources they currently have.

There may be shortcomings in some areas and whilst we continue to hope that this will improve – we also need to strive collectively to raise awareness and acceptance of FMS within our local communities as well as society. This book will hopefully become a tool that will assist this process.

Instead of becoming frustrated with the short comings and focussing on what we `don’t have` - we need to continue to remain empowered, in our own individual situation and in regards to our responsibility towards our own health and care. Focus on what we DO have and what we CAN do.

Whilst a cure or a solution would be great, I think this gives up our own power and places this power `out there` for others and can, therefore make us feel disempowered.

Disempowerment and negative emotion walk together – hand in hand.

However, on the other hand, empowerment is more likely to produce a positive outcome, and thus more positive emotions.

Recently I saw a quote that implied that our psychological and spiritual states are tightly interwoven and connected and thus can`t be easily separated. This may be true. Maybe our physical health is IMPROVED by gaining knowledge, leading to empowerment and strength and of course adequate and satisfactory medical care and intervention is a major part of that.

But, if we aim to improve and work also with our tightly connected psychological and spiritual health we most certainly will attain better long term management or indeed a more positive state of wellbeing.

Physical restoration will greatly assist us IF and WHEN appropriately and adequately addressed. However, along with this restoration if we also embrace learning about ourselves and personal growth, then it may be possible to incorporate a more positive state of wellbeing.

The book `Fibromyalgia Well-Being` is based on my experiences and learning – it is non-clinical and hopefully easy to connect with. It is also easily read and respects the issues that people with FMS may have in regards to reading, concentrating, absorbing information and only being able to do these things for relatively short periods of time.

I make no suggestion that I have all the answers to FMS. I am still learning.

I still have `better days`, and still have bad days and sometimes these bad days lead into very bad weeks. Often this is complicated more by episodes of acute illness. Earlier this year I encountered 3 sinus infections in 3 months. For the first 11 weeks of the year, I was quite unwell for approx. 6 weeks of that. I have suffered for many years with recurrent sinus infections – as some of us do with FMS. I am also currently experiencing more recent issues and challenges related to my thyroid. These added extras (on top of FMS) become exhausting, unbearable and quite depressing…not to mention unproductive, frustrating and therefore stressful.

I work hard (like we all do) to continue to connect the dots and restore my physical health and this is further complicated when plagued by unpredictable bouts of acute illness. Is it part of my healing process – an outcome from addressing a particular area or symptom ??

Or is it backwards steps ?? Or, is it just something I have to live with ??

Most certainly we are often tricked as well – when we experience good days.

Onwards we push. For me this `onwards` now includes – fresh veggie juicing, nutritional focus, and doing the best I can BECAUSE I KNOW I am coping better and I`m in a `better place` than I was 3 – 4 years ago. All the work, effort, researching, knowledge etc etc etc amounts to nothing on these bad days!!! When they strike, all I can do is try to `become invisible` - rest up, replenish, restore and hope that tomorrow is a better day. But, these are the days I try to focus on my psychological awareness and spiritual health. When I`m struck down with acute sickness and on bad flare up days or weeks, I have noticed I feel better when my psychological and spiritual health and healing become a focus.

I hope this book can be used as a positive resource. Something that can be useful, and that others (with FMS) can refer back to on those bad days. The days where we may be in `hiding`, in isolation and – indeed - invisible. These are the days that maybe this book can be picked up and reviewed again, and provide some validation and reassurance. To help gain perspective that may be temporarily misplaced or lost. To re gain clarity. To help through difficult times.

When faced with management of a chronic condition, its natural that we usually start with our physical care and hopefully intervention but it doesn’t stop there. FMS is a chronic and underestimated condition. It is difficult and overwhelming to manage. To cope with the impacts is one of the biggest challenges I have ever faced. IT IS VERY VERY REAL.

However, as with any chronic health condition, we can`t rely solely on medical and pharmalogical intervention and treatments. Not all the answers will be provided!

We may be greatly assisted, and especially in the short term and indeed I WAS. BUT then, I found that not all the answers were there. I found that I had to look beyond that. I realised I had much to gain by embracing both pharmalogical and non pharmalogical approaches.

I also found that many lifestyle changes were needed, as with most chronic health conditions.

For example – a diabetic may require medication and pharmalogical intervention. BUT for effective long term management, there also needs to be lifestyle changes – DIET, exercise and other adaptations.

A person with a back injury and living with chronic pain may need pain management intervention. But in order to live and function at an optimal level ALSO adaptation of environment may be needed, and changes to the way activities are carried out and what activities can be managed. To maintain an important focus on ABILITY.

FMS is no different – but we face many complexities!

Whilst I needed to target many areas of physical functioning that needed support, I also needed to examine other parts of myself, including self-acceptance. I had to learn to BE and not just always DO, and I faced some barriers along the way. These were my biggest areas of growth (patience and BEING).

This was a positive `thing`, although sometimes confronting BUT I actually now enjoy the new parts of ME. The parts that have started to shine through on good days – the ME that (most of the time) feels more calm and peaceful than I have for a long time. Sometimes I feel disappointed that I had to come to appreciate and enjoy the simple things by being challenged by health problems. But, such is life and I now need to keep this balance and keep the faith that I will be able to continue to enjoy and appreciate all the beautiful and good things and that the more difficult and bad days will continue to pale into significance. Life is always about highs and lows and positive and negative and includes challenges. Most of us know that the important thing is to continually capitalise on and notice the highs - the good.

This condition affects each of us differently – not just because of the complexity of the illness but also because of our previous life experiences and other factors that will influence how we manage this condition. We each have a great inner strength. We just need to tap into it. Until we do, we can`t really be sure of our own true character. Our values and behaviours will influence how we respect, nurture and care for ourselves and how we feel about this.

Respecting, nurturing and honouring yourself is NOT being selfish! No one with FMS is selfish – quite the opposite I would actually say – SELFLESS. From being confronted with FMS, I slowly had to take steps to accept myself and not feel guilty, to set boundaries and say NO – it was crucial for my healing process. If we don`t accept this, then others will not either.

We are all different – in the way we experience the condition and symptoms, the care we receive, the support we have, how we cope and the choices we make to manage our health care and needs. We are different in the backgrounds we have, the life history we have travelled, the pre cursors to the illness, the triggers, the onset, the diagnosis process etc etc. BUT, the common thread we have to each other is our capacity to understand and show empathy and compassion. Universally we feel the same things, although it may be different sequence or order but generally the same feelings - and in this way we connect to each others stories.

It is through our own learning, researching, information, sharing, intervention, planning, strategies, health care planning, enhanced nutrition etc etc that we progress forward and the important part is to also take with you your psychological and spiritual self.

I know that whenever I have faced sadness and hard times, the people I most admire and look up to – are those who have endured, faced challenge, overcome adversity, battled illness, had amazing life stories. BUT, in the process they have BECOME a person that has come out the other side and still has so much beauty, strength and grace to show the world. These are my role models and these are the greatest teachers. They don’t have any miracle cures but just simply do their best to get through whilst somehow learning so much about themselves and becoming a light that shines on others and gently encourages others.

I choose to do my very best to follow on their behaviours, as their positive attitude seems to add to their ability to cope and their individual resilience. I needed to remain empowered and responsible for my own health care and I was lucky to link in with a GP, and later a Naturopath - both of whom respected and supported that approach.

There is work to be done within Australia in regards to FMS, in order to improve medical care and intervention (including diagnosis), to develop inclusive and supportive policies and holistic supports for those of us with not just FMS but also other `invisible` chronic illnesses.

But, we are gaining momentum.

I approach the future positively and as with our condition – I have to believe that baby steps will continue to move us forwards. If we give in to our disappointment then we will not progress. Negative thoughts and behaviour greatly influence how we cope day to day with the impacts of illness.

So, also negative thoughts about our future and believing that we will not progress forward, will also make us feel more disempowered and hopeless within our own situation. This kind of thinking will also further hinder our complex condition, add to stress and therefore possibly further exacerbate our myriad of symptoms!

The biggest gains will be made when there is better awareness and understanding for people with these conditions. Having a society that is more aware of the impacts of these conditions and understanding these illnesses. A society that better accepts that these conditions are indeed real and life changing! This will then flow on to improved acknowledgement, more research, improved diagnosis, intervention and treatment AND hopefully better access to a wider range of services that can better meet individual needs. These elements will assist long term management and thus improve the `reality landscape` and enable better quality of life and participation for all of us affected by these conditions, BUT we each must also empower ourselves and believe there are many strategies and approaches that we can also implement ourselves to help our own management and care!!

I`m hoping that within our community, by getting this book `out there`, it may provide some `fuel` and will better support some of the existing vehicles and work towards improved outcomes for fibromyalgia as a whole. BUT I hope it will also assist the people that travel this very lonely, confusing and often challenging road. The road that includes many ups and downs, many unexpected twists and turns, many mixed feelings including disappointment, grief, sadness, helplessness, anger, despair, confusion and frustration just to name a few. The road that is shared by those of us living with not just fibromyalgia but also other chronic conditions, often `invisible`, isolated, tired, overwhelmed. These people are all doing the best they possibly can - mostly with unrelenting tenacity. They are truly CHAMPIONS…

Thank you for being a part of my efforts, I hope you enjoy the book; and THANK YOU for coming along today!!!!!

I would now like to hand over to Cathie, who represents Bridges and Pathways and Fibromyalgia Australia, to give us a quick run down on whats happening…Cathie will also be here through morning tea, and you will get the opportunity to talk further with her – if you wish….

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BEFORE WE BREAK FOR MORNING TEA, I have some very big thank you`s to mention today –

Firstly to Sarah and the Walkerville library for supporting today, and eagerly being involved from the outset with the book and the book launch today. Thanks so much for your efforts and support.

The people who have lent a helping hand over the last few weeks, with promotion and distribution of postcards and other materials  - for today. To the people that have shared the links, and messages about today – within their own networks, out of respect for me and the cause. THANK YOU.

To Stuart, our photographer who has kindly volunteered his time and skills to help me out today. THANK YOU (choc bar as promised!!)

 I would also like to acknowledge a very special person, my daughter Chenoa (call her up)– for her beautiful artwork that is the cover of the book. Whilst the broader idea was mine, she was able to do a wonderful job of creating a beautiful colourful piece of art.

The main focus of the cover represents a few very important things and delivers the message I hope is contained and included in the book. EXPLAIN the rainbow = hope and the sun = optimism.

I also like to call up Margaret and Claire. I have only met these two ladies over the last 5 to 6 months and believe they have been  `silent observers` for a lot of that time. I only met Claire in person a few weeks ago, and Margaret today. Once the book was near completion and publication phase came to an end, I put out an SOS for some help with promotion and media support, to get photos, to get articles in newspapers etc etc. These ladies have kindly assisted me and also provided much encouragement and support over the last few weeks. So, Thank YOU to each and both for the part you have played in this project! I know we will continue to build on our friendships and we have only just begun.

Finally, I thank a very passionate person, whom I consider lucky to be associated with, at this time and through into the future. Cathie Powell, thanks from me – not only for your support today BUT for all that you do and all that you give of yourself – to advocate for all of us with these conditions. Your tireless efforts and your unrelenting passion is very much noted and appreciated. I speak on behalf of all of us here today when I say you are truly an amazing and remarkable role model !!

Thank You to all of you here today too – from my family and myself – your support is appreciated…….now,

DRAW LUCKY SEAT – BOOK GIVE AWAY.

LOCAL PRESENTATION FOR 15th February 2012

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 24^th 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….