Making Awareness Day Personal

For 2012, 2013 and 2014, I went BIG for Fibromyalgia Awareness Day. This year, I’ll admit to dropping the ball. I’m tired, physically and emotionally. I’m tired of fighting the world. So this year, I’ve been fighting for me!

I’m sorry if you feel like I have let you down and not been there to support you.

I made this video (quite a while ago) because I am lucky enough to have a Mommy who loves me and tries to understand. (I’m not so sure about the rest of the family.) But, because of this, it upset me so much when I hear from so many of you that you don’t have the support and understanding you need. Friends and family are supposed to be there for whenever you need them. Most days, I get a message or comment from some-one who is lacking support from their nearest and dearest. Sometimes, it’s because you hide your pain, or you haven’t asked for help. Sometimes it’s because they just don’t get it. 

I’m hoping that presenting these people with this video might help.

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Three Times a Charm – ThunderClap!

If you follow my Twitter or Facebook page, you will know that I am supporting and promoting May Twelfth‘s Thunderclap ‘Tell the World!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number, Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

The message will be published on every supporters’ Facebook page and/or Twitter feed (if (WHEN) we have reached the goal number) on May 12, 12:00 PM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach by supporting with Twitter or Facebook; and/or
  • promote by inviting friends by sharing or tweeting.

Our goal: to no longer be ignored! Last year, we reached 768 supporters – let’s double that!) Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

What’s Happening for International Awareness Day 2015

I’ve dropped the ball this year when it comes to International Fibromyalgia Awareness Day (it’s been hard enough keeping my own s#!t together…know what I mean?) but that doesn’t mean others haven’t been picking up the slack.

CN Tower, Toronto, Ontario, CanadaHere is some of the stuff going on near you:

The CN Tower in Toronto, Ontario, Canada will light up blue, purple and green as part of International May 12th Light Up the Night. Each light show will run for 8 minutes at the top of every hour. You can watch via Toronto’s skyline webcam located at http://toronto.webcampak.com

Toronto City Hall CanadaCity Hall in Toronto, Ontario, Canada will be lighting up blue and purple.

The City Halls of Brampton, Mississauga and Ottawa will all light up AND the day will be proclaimed in each city.

cityhalls

Halifax City Hall in Nova Scotia, Canada and BC Place Stadium in Vancouver BC…

City Hall, Halifax, Nova Scotia, Canada

BC Place Staium, Vancouver

Canada Place – Sails of Light, Convention Centre West, Jack Poole Plaza and Science World in British Columbia; Banbridge, Armagh Gaol, Craigavon Civic Centre in Northern Ireland; Charlottetown PEI City Hall and the Peace Bridge between the Canada and US border will be lit with all three colours.

Brighton Sea Life CentreThe Sealife Centre in Brighton UK will be lit up during the day.

ASpam Building, Aomori, Japan (1)In Japan, Aomori Prefecture Tourist Center, Aspam, will be blue on May 12th, again. In addition, in Akita Prefecture, there will also be blue light up event happening for the first time at the CFS/ME doctor, Dr. Miura`s satellite clinic in Sotoasahikawa on May 12-13th.

swedenBorås City, Sweden has a huge accumulator tank for warm district heating water. It will be lit up blue with 5 000 led lights.

perthTo my own country, Council House in Perth, WA, Australia will light up.

And AAMI Park in Melbourne…

AAMI pic

You can see a growing list of events HERE.

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HAPPY FIBRO-MAGIC AWARENESS DAY

Today is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases). Mr Hennessy was based in the US but understood that it needed to be
an International event.

May 12th was chosen as it coincided with the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

FN 3Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910. Even though Nightingale was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Her previous work, and that after she became ill, led to her being the first women to get the British Order of Merit.

Although the term, FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.

(Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain.”

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years, fibromyalgia was thought to be a psychiatric or psychosomatic disorder. 

aware

Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, this century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Until very recently, May 12 Awareness efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organisations, the awareness efforts have, for the most part, focused on only one of the illnesses. For example; this site, together with my Facebook page, Twitter and LinkedIn profile, as well as LIVING WELL with FIBROMYALGIA has been focused on Fibromyalgia (obviously!).

  • From the beginning in 1993, various ME/CFS organizations were behind the idea. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
  • Efforts by Fibromyalgia organizations took a little longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
  • In Canada, through the efforts of the then newly founded (June 1993) National ME/FM Action Network, May 12th has been an Awareness Day since 1994.
  • Some organizations have an International ME/CFS Awareness Day (May 12), others have a week still others, such as the newly formed European ME Alliance which includes 9 European countries, use the whole month of May.

Hopefully, one day this history of fibromyalgia will be just that – past history.

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • balfour1816 – Doctor William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Doctor Balfour described tender points.
  • 1904 – Sir William Gowers (right) coined the term fibrositis (literally meaning  inflammation of fibres) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Doctor Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association recognised fibromyalgia as a real physical condition.
  • pic 21990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neuro-hormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)

My Jump Up & Down Moment

tumblr_lneruwMdFm1qeyzcbI have been so busy that I have forgotten to tell you all about my most recent excitement…as in, I was literally like one of those wind-up toys that manically spins one way then spins the other.

Then, of course, I had to sit down.

AAMI Park in Melbourne is going to light up purple for International Fibromyalgia Awareness Day.

Finally, some-one said yes. It’s a starting point…and we have a running jump for next year.

AAMI poster

Fundraising will start soon so we can actually have a ‘real’ event (if you can offer any type of sponsorship or donations, please contact me at fibromodem@fibromodem.com)

And now we have a very low-budget picnic to organise quickly…

Update 020514-2

P.S. I also got an email from Australia’s Prime Minister and Melbourne’s Lord Mayor – more jumping up and down!

Share the (Thunder) Clap!

May12thMay 12th – International ME/CFS & FM Awareness Day is running this year’s Thunder Clap – an initiative in which I would be honoured if you chose to get involved.

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (and we have so the message will get out there whatever happens!), Thunderclap will share the same message on EVERY supporters’ Twitter, Tumblr and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook, Tumblr and Twitter that cannot be ignored!

For example:

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What is THIS Thunderclap?

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This is our day to raise awareness around the world. This year marks the 22nd anniversary. We are real people, with a real physical illness and we need to raise awareness. Awareness will ultimately translate to more funding, research and a solution.

The message will be published on every supporters’ Facebook page, Tumblr and/or Twitter feed WHEN we reach the goal number.

What Can I do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter, Tumblr or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

290414.2

3. You can write a blog post to let all your followers know about the project.

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard!

These illnesses are real; the people are real; and they need help NOW!

With awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

 

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

How to be Aware in 2014

So, you’d like to get involved in International Fibromyalgia Awareness Day but you don’t know how, where or what?

Here’s a collection of events and activities:

Light Up the Night (online)

Light Up

The challenge (and we NEED your help!) is to light up as many buildings as possible with any of the 3 colours used on International Awareness Day (May 12th) – blue, purple or green.

Change one light bulb or… light up your house like a Christmas tree!!!
Light up your own home or… the Empire State Building!
Radiate a single beam or… run a competition in your street!
It’s up to you.

With the awareness we WILL create, we will all be winners but THE winner will be the country with the most photos in each of these categories:

  1. Number of Public Buildings/Places
  2. Number of Private Residences

Of course, we’ll need photos of your buildings aglow so photos should be to sent to May Twelfth at info@may12th.org. All pictures must be emailed by May 19th to be included. Please include information about where the photo was taken (ie town, region and country)

Calgary International Awareness Day Educational Event for Myalgic Encephalomyelitis/CFS, Fibromyalgia & MCS  (Alberta, Canada)

Every year in May, celebrations are held all over the world by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity and their supporters.   The celebration is also a day of advocacy and awareness.  The 2014 Calgary May 4th program will again use technology to allow the best speakers to present exciting information about treatment advances by two-way weblink. The audience will be able to hear and interact with the speakers in real-time.

This presentation will be recorded so that if you are unable to attend or if you wish to view it again, you will receive a link to the recording and will be able to watch it in entirety as many times as you like. The Speakers are:

  • Craig Young
  • Staci Stevens
  • Jarred Younger

Fibromyalgia, CFS & ME Gold Coast Fibromyalgia Awareness Day Picnic (Queensland, Australia)

FibroMummies Butterfly Tea Party (Lincolnshire, England)

Fifth Annual Fibromyalgia Awareness Dinner (Indiana, USA)

The fifth Annual Fibromyalgia Awareness Dinner will be held on Thursday, May 8th at Great Oaks Banquet Hall in Cedar Lake, Indiana. Tickets are on sale now through May 1st for just $17 which includes a family-style, all-you-can-eat chicken/fish dinner with French fries, coleslaw, salad, rolls, coffee, soda, and water. Tax and gratuity are also included. A cash bar will also be available. Cash and checks are accepted. Credit card payments are also accepted for an additional fee of $1 per ticket.

Jammin’ in our Jim Jams (online)

JammingDawn, Rob & Amy are jamming in their jim jams on Sunday 11th May!

There are 3 ways to support them:

 

  1. Donate on http://www.justgiving.com/dawn-Derraven
  2. Buy some jam – email Dawn @ fibromyalgia.dee@hotmail.co.uk
  3. If you aren’t able to donate, please visit and SHARE Dawn’s blog: Fibromyalgia-dee.blogspot.co.uk/

 

May 12 Blog Bomb (online)

Blog BombWrite a post describing your FM story, and how the condition has impacted on your ability to function in society (or another related topic)……

Schedule your post to be published May 12th using the hashtag #May12BlogBomb for sharing, so that these posts can then be found and shared widely on FB, Twitter, Google etc. (Just add the tag to your FB and Twitter posts promoting your blog post so that others can find it more easily.)

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia Awareness Family Day Picnic (Tasmania, Australia)

sorry - no link

13th Annual Michigan Fibromyalgia Awareness Day Conference (Michigan, USA)

Featured speakers will present information on understanding and managing fibromyalgia, and how to overcome the daily challenges of life with fibromyalgia.  A strong emphasis will be placed on diet and holistic therapies.

Thunderclap (online)

Join May Twelfth in sharing this message together at the same time – automatically: Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM. #may12th #mecfs #fibro #spoonies #fmhttp://thndr.it/1hUCsUn

Walk to Cure FM, 1k-Fun Walk/5K Run (Ohio, USA)

Walk and run as well as Door Prizes, Raffles, Tee-shirts, Brunch, Awards Ceremony, and Entertainment!

Zumbathon for Fibromyalgia (Indiana, USA)

 

If none of these activities appeal to you, you can always share this information with others on Facebook, Twitter, Google, etc… or you could always wear a Fibromyalgia Awareness top? (Can’t blame a girl for trying!)
Int Fibro

 

 

LIGHT UP the NIGHT

Have you been following my Facebook page?

Have you been checking out my tweets?

I am taking up the LIGHT UP the NIGHT Challenge.

The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue, PURPLE or green.

light up the night

Of course, I’m supporting going all out for PURPLE!

We’ll all be winners but there will be bragging rights awarded to the country with the most photos in each of these categories:
1. # of Public Buildings/Places
2. # of Private Residences

What started as a friendly challenge between Canada and Northern Ireland has now grown to be international. This will be the first time Australia has competed, and I have humbly taken the opportunity to co-ordinate on our behalf. All details are available on the Event page.

The contest will be adjudicated by May Twelfth and final results posted on the May 12th International Awareness Day page.

We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!

So far, I’ve contacted the Arts Centre Melbourne (for the Spire), Parliament House and the Royal Exhibition Buildings in Victoria. I have also tried to contact the Sydney Opera House and the Sydney Harbour Bridge. We have some other groups looking at places on the Gold Coast to light up.

purple

If you’d like to help,

please TWEET any of these:

  • ❤ to see a PURPLE #sydneyoperahouse for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @Sydney_Harbour bridge for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @artscentremelb spire for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @VicParliament House for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE #royalexhibitionbuilding for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • @artscentremelb Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up Spire pls? @Fibromodem #spoonie
  • @cityofmelbourne Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up @artscentremelb Spire pls? #spoonie
  • @cityofmelbourne Turn @artscentremelb SPIRE PURPLE 4 International #Fibromyalgia Awareness Day #spoonie

OR visit their FB pages and leave a message like:

  • The Canadians are turning Niagara Falls PURPLE for May 12 – International Fibromyalgia Awareness Day. Let’s light up the <insert building>

Let’s have fun with this and make this a May 12th to remember!
Int Fibro

Thunder Strikes(?) Twice

If you follow my Twitter or Facebook page, you will know that I am supporting and promoting May Twelfth‘s Thunderclap ‘Tell the World!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number, Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

The message will be published on every supporters’ Facebook page and/or Twitter feed (if (WHEN) we have reached the goal number) on May 12, 12:00 PM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach by supporting with Twitter or Facebook; and/or
  • promote by inviting friends by sharing or tweeting.

2. You can write a blog post to let all your followers know about the project and embed the link: http://thndr.it/1lgWRbA

Our goal: to no longer be ignored! Last year, we reached 768 supporters – let’s double that!) Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

Int Fibro

‘Til Next Year?

So another International Fibromyalgia Awareness Day has passed…time to recover and take a breath – but what then? Are you going to wait until next year to promote awareness of FM?

From Fibro Daily:

purple-warrior-sandy-prenziThe efforts of Fibromyalgia Awareness Day shouldn’t be relegated to May 12th. Instead, they should infuse the whole calendar with the Fibro Warrior Spirit.

So short of storming the castle and scribbling all over accessible calendars, how do you infuse that Fibro Warrior Spirit into the days beyond May 12th?

French-castle-purpleWell, really…you should storm the castle.

Think of the castle as all the entities that resist Fibromyalgia, rolled into one, then storm it with your charm, determination, and wit. Organize the non-Fibro castle with a ferocity that makes a knight take notice! After all, this is your health we’re talking about. Your life. Don’t play proper!

tAG_129661Play strategically, with a smile. A Fibro Warrior smile.

By doing so, you’ll invoke change.

Ways to Strategically Invoke the Fibro Warrior Spirit:

1. Develop a social media presence.

Start a Facebook page and Twitter account that focuses on raising Fibro Awareness. Ask people you know or who are on your personal page to like and follow the cause, then spread the word.

To develop a strong following, you must consistently post relevant posts. The internet is FULL of these, so start researching and posting! A Fibro Warrior searches every nook and cranny for “bootie”.

My awareness campaign32. Start a Fibromyalgia group in your community.

Again, social media is going to play a huge part in this effort because you will organize meetings via the social media sites. Even if only one person responds to your meeting request posts, forge ahead!

To prepare for this meeting, take paper, pens, and highlighters for those who might not feel comfortable using technology to take notes. A Fibro Warrior always carries supplies.

Why do you need to take notes?

Because you are going to brainstorm ideas about how to publicize Fibro Awareness in your community and to do so, you need to keep that arch enemy Fibro Fog at bay.

A good way to start publicizing is by giving free Fibromyalgia presentations at local meeting spaces, such as the YMCA. Make a list of those types of places. Make sure to include:

  • gyms
  • spas
  • yoga studios

Focusing on beauty and health businesses makes sense, as their clientele are more attuned to wellness. Also, such businesses tend to be frequented by women, which is your target audience as more women are diagnosed with Fibromyalgia than men. However, don’t forget the men! Their pain remains severely unacknowledged.

At the very least, all presentations should feature an explanation on the history, diagnosis, and research of Fibromyalgia.

3. After brainstorming, approach local businesses about using their space to give a presentation on Fibromyalgia.

That means you also need to:

  • Ask if the business is willing to hang flyers prior to the event.My awareness campaign2
  • Ask the owners/employees/fitness instructors to make an announcement before each class/session they lead.
  • Make sure to network the right way! You want to let the public know when a business has helped your efforts. That means you should give them a public thanks by mentioning them on social media and in promotional materials.
  • Hit up as many businesses as possible to reach as many people as possible. You can use your Fibromyalgia group to divvy up presentation responsibilities—i.e., one person does the approaching, one does the presenting, one handles the promotions.

A victorious Fibro Warrior knows how to delegate and appreciate.

4. Use every endeavor—meetings, presentations, and interviews—to further the cause.

Make a sign-in sheet and request that people leave their name and Facebook/Twitter info. Prominently display your own contact info so people can like you on Facebook or follow you on Twitter.

Once you have the contact info, add them to your friends and keep them informed of all you are doing. The more people you tell, the more people will share.

Consider this info collection your Fibro Warrior battle cry.

5. Learn to write a press release. You can easily research this online.

After building substantial support and giving a few presentations, send out a press release about upcoming presentations to:

  • local TV station
  • local radio stations
  • Fibro websites and podcasts

Local media personalities are always looking for positive stories about the community. In the press release, include all the online success you have had plus the presentations you’ve given. Mention that you’d love to share more about your Fibro Warrior efforts over an interview.

If they say no, don’t let them off so easily. Contact them again, at a later date. A Fibro Warrior always keeps the target in sight.

6. Fight for Fibromyalgia legislation on a city, state, and national level.

(For USA) Check out government websites to see if the ones you are focusing on have released any proclamations about recognizing Fibromyalgia.

Also, a very handy map can be found at http://fmcpaware.org/resolutions-and-proclamations?sid=640

If you click on a state, it will reveal what fibromyalgia legislation the state has passed.

If your city/state doesn’t have any, it’s time to start:

  •  writing letters
  • writing emails
  • making phones calls

to government officials. You can find their names via search engines and government websites. Include any press releases and media coverage you have received. Politicians like numbers (surprise!) If you are making a positive wave in their community, they’ll want to hitch a ride.

Remain diligent on follow-through with the politicians you contact. So many efforts fail because of a lack of follow-through. Just because a contact don’t respond right away doesn’t equate to wasted efforts. You just have to outlast the politicians’ determination to ignore. Don’t get used to being ignored. Fibro Warriors stand tall and proud even in the face of adversity!

7. Breathe. Laugh. Live.

In order to succeed as a Fibro Warrior, you must live your life to the fullest.

Don’t let Fibromyalgia prevent you from doing that.

Enjoy a hot bath. A massage. Eat a luxurious meal. Nap. Spend time with family and friends. Work. Do yoga.

By pursuing activities outside of the Fibromyalgia realm, you will actually strengthen the Fibromyalgia realm. That’s because you’ll see it with a refreshed, renewed vision.

Remember: You are a Fibro Warrior, so invoke and change. Some people don’t even think you exist, but those people don’t know what’s about to hit them.

Purple_Warrior_by_AjarnNog