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Fibromyalgia Support Network

2021 AUTUMN Newsletter

Fibromyalgia Support Network of Western Australia Inc.

Web: http://www.fibronetwork.org.au E: info@fibronetwork.org.au

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Chairperson’s Message

Autumn is here and the trees are about to show us how lovely it is to let the dead things go. It can also be a season of renewal and rebirth. A time to adopt a fresh new outlook on life and find enjoyment in little things.

Thank goodness we all survived 2020 and for those who sadly lost loved ones, may we remember that these events have forced us to change individually and collectively for the better. I hope you can join me collectively to look within and make our place in the universe a great place to grow, experience, and make history showing our commitment to making life better after such challenges.

On a lighter note, this year has kept our Volunteers working busily in the background. A new Website is launching this coming May and decided on some unique fundraising projects. Also in May is our International Awareness Day, raising awareness every year on the 12th. This year we will be holding an Awareness Day Luncheon in Perth with a Door Prize, Raffle, new items for Sale and a lot of Purple Joy and Frivolity.

In May we launch our Membership Program. We urge you to join our Support Network. It means gaining a support group of thousands of others with fibromyalgia who understand exactly what you’re going through, as well as supplying you with more resources and many opportunities for everyone to raise our awareness.

Jason Hiscock

Why May 12th?

In1992, the date was chosen to be the International Awareness Day for Chronic Immunological & Neurological Diseases (CIND). The CIND illnesses include Fibromyalgia (FM), Chronic Fatigue Syndrome (CFS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity (MCS) & Myalgic Encephalomyelitis (ME).

These illnesses are put under the CIND umbrella, characterised by cognitive problems, chronic muscle and joint pain, extremely poor stamina, and numerous other symptoms, that afflict people around the world in alarming numbers.

The12th May was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. Florence Nightingale’s own diary documents her symptoms of constant pain, fatigue and mental cloudiness that she experienced in the last 40 or so years of her life. She was an English army nurse who inspired the founding of the International Red Cross.

Florence became chronically ill in her mid-thirties with a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)– like illness. Often bedridden in her last 50 years of her life, despite suffering from her illness, managed to start-up the world’s first School of Nursing.

The day has largely been grassroots and undertaken by individuals and individual organisations.

The awareness efforts have, for the most part, focused on only one of the illnesses. In the beginning various ME/CFS organisations were behind the idea. In Canada during 1993, the National ME/FM Action Network was founded using May 12th as an awareness day since 1994. Fibromyalgia was added to this day from 1995 with their parliament declaring it established in 1996.

It took until 2006 for Canada’s Senate to proclaim May 12 be a National Awareness Day for Fibromyalgia and ME/CFS. In the UK early support came from the group, BRAME (Blue Ribbon Awareness of Myalgic Encephalomyelitis). BRAME highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995, which became instrumental in the campaign being adopted internationally for ME/CFS.

Internationally, Fibromyalgia organisations efforts took longer and MSC groups efforts have been limited. However, in 1997, the US started efforts with the National Fibromyalgia Association (NFA). Many Chemical Sensitivity & Environmental Sensitivity groups have been slow to take up the day as they use the month of May to raise awareness for Multiple Chemical Sensitivity and Toxic Injury Awareness.

Some organisations have an International ME/CFS Awareness Day (MAY 12) where others have a week, still others, such as the European ME Alliance which includes around 10 or more European countries, use the whole month of May. Lady Gaga has not only done a Film on her illnesses but still actively supports organisations and people with ME/CFS and Fibromyalgia.

International May 12th Awareness Day is observed by dying hair blue or dressing up in blue for ME/CFS, for Fibromyalgia it is purple, for Lyme Disease & Multiple Chemical Sensitivity it is green and yellow for Gulf War Syndrome. Public landmarks are lit up in color for International May 12th Awareness Day, typically using blue for ME/CFS and purple for Fibromyalgia.

 This year, 2021, marks the 29th year for International May 12th Awareness Day. We hope you use May 12th, Florence Nightingale’s birthday to spread education, awareness and show our strength like she did to keep fighting.

EDUCATIONAL FORUM

Held on the 1st Wednesday of each month from 11.30am – 1.30pm, (excluding January’s) at the South Perth Library, corner South Terrace and Sandgate Street, South Perth. Each month a Guest presenter talks about a subject related to Fibromyalgia. We break for refreshments, followed by an informal chat/question session with some of our committee members. Friends and family are very welcome.

FSNWA financial members cost is free and Non-members $5.00, which includes refreshments. Tickets available at the door.

Our next Educational Forum in 2021….

Wednesday 7th April 2021 – Narelle Gaunt, The Life Spring.

                                                                          Discussing Float Therapy and How it helps Fibromyalgia

Watch out on our Facebook page for further details of our next Guest.

COFFEE CATCHUPS

Informal Coffee Catchups are a great way to get together with others who have Fibromyalgia. Chatting with others who understand what you are going through is a big morale booster. Friends and family are very welcome. You don’t need to book… Just turn up on the day. Look out for our logo on the table. These are hosted in a variety of suburbs and are a great way to connect with other people in similar situations in a relaxed, enjoyable environment.

Events: http://www.fibronetwork.org.au/events/calendar/month.calendar/-.html

VOLUNTEERS NEEDED/How you can help?

Ever wanted to help out the Network? Well, there are plenty of options to do so!

Do you feel isolated and want to make new friends? Are you bored but find it difficult to get out?
Do you want to make a difference to others that suffer as you do?

You can be a Coffee Catch Up Host for your area, help at an Event or why not join the Committee!
We are in great need of people to join our committee, it’s not physically draining and is very rewarding. Meetings are every 6 weeks and it’s not necessary to attend them all. We use Zoom!

Want to know how to do any of this? Email info@fibronetwork.org.au

WATCH OUT FOR A MEMBERSHIP EMAIL AND FACEBOOK POST

Come May, we will be telling you all about our New Membership Program. A post on Facebook will give you an email link to message us to register you. If you are already a FSNWA member, you will automatically receive an email in May with the necessary details.

We wish to really urge you all to consider your commitment to your membership. A membership program will allow us to better assist those committed in their journey, to those members who only require limited services from us and to those who would just like to support other members of the Support Network.

The Winter Edition will be Chilling!

Many exciting things are coming to us later in 2021 that will be in full swing come Spring.   WATCH OUT FOR OUR WINTER NEWSLETTER!

 

DISCLAIMERS

This newsletter contains information about Fibromyalgia.  The information is not advice and should not be treated as such. (Full Disclaimer available on the Networks Web Page)

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