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.
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