FIBROMYALGIA SUPPORT NETWORK

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1 FIBROMYALGIA SUPPORT NETWORK I DON T NEED EASY, I NEED POSSIBLE! The above is a quote from Bethany Hamilton, a teenager and a surfer who lives with her parents in Hawaii. While on her surf board, Bethany dangled her left arm in the water and a shark bit her arm off near the shoulder. After a recuperation period Bethany returned to surfing with one arm eventually re-entering competition. She became disheartened and gave up competitive surfing. Bethany saw the 2004 Indian ocean earthquake and tsunami on television which helped her to view her own problems from a different perspective. She joined a youth group and traveled to Thailand where she helped a young orphan boy overcome his fear of the ocean by taking him out on her surf board. The realization that she could use her gift to inspire people motivated her to take up surfing again. Necessary adjustments were made to her surf board to prevent her from falling off while paddling out through the waves. Following one competition, a reporter asked her what she would do if given the chance to undo the loss of her arm. She replied that she would still lose it because she can embrace more people now than she ever could with two arms ACHIEVE THE IMPOSSIBLE. We could never have imagined how much one small article in a newspaper could have changed our lives...'women wanted to walk to North Pole. Within two years, Sue Riches & Victoria Riches (mother and daughter), were trekking across the frozen wilderness that is the Arctic Ocean, as part of the first all women's expedition to the North Pole. At times totally terrifying and at times indescribably beautiful, it was a trip of a lifetime. We discovered that ANYTHING is possible if you put your mind to it, and if you WANT to succeed. We have since written a book, Frigid Women, and are regularly booked as motivational speakers giving after dinner speeches all over the world. If we only inspire one person to follow their dream, then we have succeeded. Always remember that anything is possible - just believe in yourself JULY 2011 Editor: C Kaye Brand PhD Circulation 759 Inside this issue: I don t need easy! 1 Marathon run for Fibromyalgia Fibromyalgia coffee mornings Cognitive dysfunction? Your s 5 Next meeting 6 Who am I? The FM Forum 7 8 All opinions expressed in the Fibromyalgia Support Network newsletter are those of individuals and not necessarily those of the c o m m i t t e e o r membership. Any advice, either explicit or implied is not intended to replace qualified medical advice. Individuals should consult with their own doctor or health professional for specific medical advice.

2 Page 2 FIBROMYALGIA SUPPORT NETWORK One little lady, Katie, taking one step at a time for 42km, to raise awareness for Fibromyalgia. My mother was diagnosed with Fibromyalgia over 10 years ago. Since the day of her diagnosis I have seen her go through more pain than anyone should have to deal with, I have seen her frustrated as she bounced back and forth from specialist to specialist and I have seen her absolutely exhausted and drained from her medical condition. What s even worse is that as I watched her in pain there was nothing I could do. Well I could make her soup, adjust her blankets and sit with her, but my mother doesn t have the flu she has Fibromyalgia and it won t be gone tomorrow or next week so what I really need is a magical little pill to take all her pain away. Unfortunately I don t have that magical little pill, and I can t take my mother s pain away, but I can do my part to raise awareness and hopefully with this awareness will come more research and with the research will come more answers for her and other people affected. I want people to know what Fibromyalgia is so they can be more companionate and understanding towards sufferers, I want people to understand that it affects men, women and children and most importantly I want medical doctors to have better access to more research on FM so they can provide superior support and answers to their patients. Running a marathon has been something that I ve wanted to do for quite some time. I think a marathon goes hand in hand with Fibromyalgia because I feel it will give me the opportunity to walk in my mother s shoes for one day. Running 42km is by no means an easy task, but neither is living with Fibromyalgia, running 42km will cause aches, and pains and muscle cramps but so does living with Fibromyalgia and finally running 42km is a long journey where I will learn to listen to my body in a very similar way that people with Fibromyalgia must also listen to their bodies. Please show your support and together I know that we can make a difference. Let s get people talking, asking and researching. To follow me on Facebook and to see my training updates please visit: mobileprotection#!/pages/fibromyalgia-awareness/ ?sk=info Make sure to share the page with all your friends so we can have their support as well. To make a donation no matter how big or small because every bit will help, please visit.. The City to Surf Fun Run is on August 28th. Please note the donation tab on our web site will not be available until August. KATIE SHIRAISHI.. our marathon girl for the City to Surf fun run!

3 FIBROMYALGIA SUPPORT NETWORK Page 3 FIBROMYALGIA COFFEE MORNINGS South Perth: The third Friday of the month at 10.30am at The Millpoint Caffe Bookshop, 254 Millpoint Road, cnr Douglas Ave, South Perth. Gosnells: The second Monday of the month at 10.00am at Gosnells Agonis Cafe, Albany Highway, Gosnells. Rockingham: The forth Friday of the month at 1.30pm at Rockingham Public Library meeting room on Dixon Road Rockingham. Landsdale: The second Friday of the month at 10.30am at Cafe 7 at The Landsdale Forum, 127 The Broadview, Landsdale. Albany: The last Wednesday of the month at 10.00am at The Dome in Albany (WA). Contact Sian Geraldton: The second Tuesday of the month at The Coffee Nook (cnr Shenton & Milford St) at if you plan to attend Enquiries: This month Christina is the coffee morning coordinator. For any queries re coffee morning details or if you wish to start one in your community, contact Christina Come and join us for a chat! Just turn up and find the lady in the red scarf!

4 Page 4 FIBROMYALGIA SUPPORT NETWORK COGNITIVE DYSFUNCTION? A friend sent this to me. At first I thought this was really funny - until I realized that it could be described as cognitive dysfunction! I decide to water my garden. As I turn on the hose in the driveway, I look over at my car and decide my car needs washing. As I started toward the garage, I noticed that there is mail on the porch table that I brought up from the mailbox earlier. I decide to go through the mail before I wash the car. I lay my car keys down on the table, put the junk mail in the garbage can under the table and notice that the can is full. So I decide to put the bills back on the table and take out the garbage first. But then I think, since I m going to be near the mailbox when I take out the garbage anyway, I may as well pay the bills first. I take my cheque book off the table and see that there is only one cheque left. My extra cheques are in my desk where I find a can of Coke that I had been drinking. I m going to look for my cheques but first I need to push the Coke aside so that I don t accidentally knock it over. I see that the Coke is getting warm and I decide I should put it in the refrigerator to keep it cold. As I head toward the kitchen with the Coke, a vase of flowers on the counter catches my eye they need to be watered. I set the Coke down on the counter and I discover my reading glasses that I ve been searching for all morning. Then I decide I better put them back on my desk but first I m going to water the flowers. I set the glasses back down on the counter, fill a container with water and suddenly spot the TV remote. Someone left it on the kitchen table. I realize that tonight when we go to watch TV I will be looking for the remote but I won t remember that its on the table. So I decide to put it back in the den where it belongs, but first I ll water the flowers. I pour some water on the flowers but quite a bit of it spills on the floor. So, I set the remote back on the table, get some towels and wipe up the spill, then I head down the hall trying to remember what I was planning to do. At the end of the day: - the car isn t washed - the bills aren t paid - there is a warm can of Coke sitting on the counter - the flowers don t have enough water - there is still only one cheque in my cheque book - I can t find the remote - I can t find my glasses - And I don t remember what in the world I did with the car keys! Then, when I try to figure out why nothing got done today, I m really baffled because I know I was busy all day long and I m really tired. I realize this is a serious problem and I ll try to get some help for it but first I ll check my .

5 FIBROMYALGIA SUPPORT NETWORK Page 5 YOUR COMMENTS THIS MONTH From S: I wanted to reply to thank you so much for sending me the information the other day with the May newsletter. I just sat and cried for a while after, thinking how fortunate I am to have finally found somewhere that will understand and support my condition. I love the new tortoise logo. She looks happy. In my honest opinion, the ONLY name for her could be "..." That is my entry into the competition. From another S: Just had a call from C from Bayswater. She is not well at all at present, but would really like to attend a meeting at Melville, and also the Forum. She has had "bad experiences" with public transport, and would like us to ask, if possible, if there is anyone who could give her a lift to meetings. From N: I am not surprised you have 700 readers I read those newsletters and burst into tears. I never thought my health was even slightly normal until now. I suffer from fibromyalgia and hyper mobility syndrome. Pain and sadness is something I thought I was overdoing until your newsletter. The humour is a great balance. All this time I thought it was partly my fault. My husband only started empathising for me when his mate (a male) talked about his fibromyalgia condition! I could not believe both those newsletters could be so relevant to my life. From L: Fantastic newsletters & I LOVE the new logo (don't know the old one but I'm sure this one is better!!) Of course please add me to the database - already I feel loved & supported by just reading the newsletters!! Will also try & make it to one of the coffee mornings. From E: Congrats to all those involved!!!!! Thanks Kaye for your uplifting message and for forwarding me copies of past newsletters. I must say the support group presents as a very dynamic and proactive group and look at all the people you have on your committee!!! I am in awe because I also suffer from.. which is a..disease and was involved with starting and running our support group ((WA branch) for 14 years. Sadly, whilst the other states in Australia are going full steam ahead the WA branch is in recess because nobody is prepared to do anything. So, congratulations on what you are achieving!!!

6 Page 6 FIBROMYALGIA SUPPORT NETWORK NEXT MEETING THURSDAY 4th AUGUST LOOK WHAT HAPPENED AT THE FORUM! I always love the debrief and the discussion after an educational or Forum such as our Fibromyalgia Forum with Associate Professor Geoffrey Littlejohn on July 30th. It allows for reflection on the information gained and provides an opportunity to ask the questions that you did not ask at the time. It may also enable us to plan new strategies in the light of new information about Fibromyalgia. For those who cannot make it to the Forum, this will be your opportunity to ask your questions! Let s make it a special afternoon tea! Please bring a small plate of finger food to share with everyone while we chat. The Fibromyalgia Support Network Educational and Support Meetings are held on the: First Thursday of every month at the Anne Reid Room at the Melville Civic Square Library (behind Garden City) from pm. Entry is off Davy Road, Booragoon. No need to book! Just turn up. Cost is $4.00. or Donelle I still need a name? We have received some very enthusiastic, convincing and non conventional names sent in for our new Tortoise Logo Naming Competition. Join in the naming competition! Entries close on Monday 25th July. The committee members will judge all entries and the winner will be presented with their prize at the Fibromyalgia Educational Forum on July 30th by our Patron Associate Professor Geoff Littlejohn. Join in the fun and send your suggested names to 70

7 FIBROMYALGIA SUPPORT NETWORK Page 7 WHO AM I WHEN I AM IN PAIN? Some thoughts from Linda Ruehlman PhD from Goalistics ( People with chronic pain are not only often faced with disabilities but can also be challenged to maintain a valued sense of self, that sense of who they are. Psychologists who ask the question Who am I? describe the self as having several components. They describe the actual self, the ideal self, the ought self, and the feared self. The actual self is described as who you are now, your personality, your physical self, your skills, your emotional and psychological habits and characteristics. Your ideal self is who you would like to be. The ought self is who you think you should be; who you believe others want or expect you to be. The feared self is the person you fear you may become. People with chronic pain may feel that chronic pain challenges the who you are. Since your pain began, you may have not felt like yourself and wonder who you are becoming. Apparently this is not uncommon. Some researchers (Ref: Eur J Pain 2010 Jul;14(6):648-53) have found that people with chronic pain are often very concerned about letting others down and about deterioration of physical, psychological, or emotional functioning. I am sure these thoughts from Linda are familiar to most of us who experience the multitude of Fibromyalgia symptoms. Getting a referral from your GP to a clinical psychologist who specializes in pain management is often an effective way to develop strategies to manage these thoughts of identity and maintain that valued sense of self. JOURNEY TO WELLNESS The following is from an article written by Helen Martino-Bailey who is a nurse and inspirational writer. Helen writes articles for the Western Suburbs Weekly in Perth so some of our readers will be familiar with her writing. I saved one of her articles from the February edition of the paper and today it just happened across my desk! The title of the article is Let the journey to wellness begin. Although we have probably all read and heard of this advice before, I find that repetition helps me to finally take health hints on board to stay! These are her 5 recommendations to improve our wellness. Eat healthy, exercise regularly, stop smoking, reduce alcohol consumption. Practise daily de-stress techniques such as those offered by meditation or yoga. Learn new ways to better balance your career and family life. Develop emotional awareness. Observe your emotional patterns and take positive steps to help improve them. Each day, take time to reflect on the things that bring joy to your life. Peace is a vital component to a healthy life. What can you do that will allow you to feel the calmness of your inner self. Make time in your life for stillness.

8 Page 8 GINGER Be passionate about your wellness Public Fibromyalgia Educational Forum We have over 300 already booked for this Forum! Seats are still available. Bookings are essential. Contact Kaye Ginger is a herb with a complex chemical structure and proven efficacy in treating certain medical conditions. Actually, many parts of the world have been using this herb for more than 2,000 years - it is a common additive and medicinal herb in Chinese and Indian cultures. Over the last 20 years, numerous studies have shown the efficacy of ginger in treating various conditions. The best studied effect of ginger is its gastrointestinal properties. Ginger is commonly used to treat various types of "stomach problems," including motion sickness, morning sickness, colic, upset stomach, gas, diarrhoea, nausea and vomiting as well as loss of appetite. How does it work on the GI tract? The chemicals shogoal and gingerol found in the ginger rhizome are believed to stimulate the flow of saliva, bile, and gastric secretions. Ginger also has been found to suppress gastric contractions and improve intestinal muscle tone and peristalsis. Constituents in ginger are thought to interact with 5HT-3 receptors and may be partially responsible for the anti nausea benefits. Fresh ginger root can be prepared as a tea. (Reference: Life Extension Daily News) Saturday 30th July pm Elizabeth Jolley Lecture Theatre (Building 210) Curtin University, Kent Street, Bentley Free car parking P3 or anywhere. Enter off Beazley Avenue View campus map at Look for signs Cost: $15.00 (Afternoon tea provided) YOUR COMMITTEE Kaye (President) Donelle (Vice President, Web Master) Sue (Secretary) David (Treasurer) Sian (Country membership, FM register) Ron (Men's contact) Gina (Coffee morning co coordinator) Sascha Wendy Christina Julia