‘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.


♩♫ Lyric(a) Writing is an Interesting Process ♫♩

So Week 3 started today…my body aches just a little more each day, the fog is not lifting (which I really thought it would), and my face hurts beyond words.


It doesn’t help that I had to go to the dentist for a Crown preparation so last night was spent with some frozen vegetables attached to my cheek.

And I’ve hit exhaustion – I think I have over-loaded myself with the Thunderclap campaigning (nagging), blogging every day, reminding contributors for the next issue of LIVING WELL with FIBROMYALGIA, tweeting, my shop and my FB page – it’ll all quiet down after May 12th but right now, I keep getting anxious that I’ve forgotten something to do. spireI’m also trying to get ‘them’ to light a spire (that we have in Melbourne) in PURPLE for May 12th (looking forward to a night-time picnic with Thais (did I tell you she’s back?) under the spire – anyone else coming? You can help by emailing the appropriate people)

I’m also trying for Sydney Harbour Bridge and the Opera House but I think I’ve left that one too late! (If you want to help with this one: tweet to @VividLive  Niagara Falls will B PURPLE from 10:15-10:30PM EST on May 12 for #Fibromyalgia Awareness: can we light up the Bridge & Opera House?

sydney opera house Sydney_Harbour_Bridge01

So I haven’t had a chance to FEEL anything. I just want to rest BUT I don’t feel I can as this is the lead-up to Awareness Day (I can rest afterwards, right?).

I try not to nap during the day (no matter how bad it gets) but today, I fell asleep for 4 hours.

My body just wants to stop – but, as you can see, I have no idea if it’s medication related or just life!

In Exactly 4 Hours…

In exactly 4 hours, I should get to see how/if all the hard work of the last couple of months, promoting (read ‘nagging’) the Make Fibromyalgia VISIBLE Thunderclap, has had any type of effect on Facebook and Twitter.

Hopefully, all of those supporters (as I write, at 757) and at least some of their friends and family (currently at 254,384) will upload this picture to their Facebook cover-photos for the entire month of May.

Right click this picture to save to your computer; then upload to your cover photo.

Click on this picture: Right click on the full-size header to save to your computer; then upload to your cover photo.

Visible army squareHopefully, all 953 members of the VISIBLE Army will upload their VISIBLE Army photo to their profile pictures for the entire month of May.

Hopefully, in exactly 4 hours, more people will be aware the Fibromyalgia exists.

However, in exactly 4 hours, I will be sitting in my dentist’s chair, getting prepped for a crown (Not happy, Jan!)


niagaraBut one thing I definitely won’t be missing is when Niagara Falls goes PURPLE for Fibromyalgia Awareness. Niagara Falls will be PURPLE from 10:15 to 10:30pm EST on May 12th. No, I won’t be going to Canada! I’ll be watching it live from my lounge room in Melbourne, Australia on http://www.niagarafallslive.com/

If you want to see it, too, and you’re somewhere else in the world, check out the countdown to Live Webcast: Niagara Falls & Fibromyalgia Awareness.

Can you tell? I’m a bit excited by all the happenings for Fibromyalgia Awareness.