TEA TREE GULLY LIBRARY – 1ST 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…
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