Make Fibromyalgia VISIBLE!

CARE & Make Fibromyalgia Visible would love to support you in creating a memorable International Fibromyalgia Awareness Day event in your community.  That’s where your efforts really make a difference.  FM events occur all through the month of May.

This year, the National Fibromyalgia and Chronic Pain Association (NFMCPA) pulled together all of the best tips and advice–plus tools, from the pros.  Putting on an event can be easier with a ready-made kit that includes a step-by-step check-off list and a Guide to Creating Local Fibromyalgia Awareness Events for more time-tested considerations.

It’s all free and ready to be sent to you!

FM Awareness Day activities (through NFMCPA) revolve around four topics have a special emphasis raising public FM awareness, not just awareness to those who have FM, their families and friends. The NFMCPA created materials for people with FM, Support Group Leaders, and other advocates to create awareness and education of FM and chronic pain illnesses.

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National Fibromyalgia & Chronic Pain Association Community Picnic, Walk to CURE FM, & Mall/Farmer’s Market Table Top* Event Kits contain:

• 11×17 Table top cardstock poster with tripod
• 11×17 Posters for community event boards
• FM Information Brochures
• Guide to Creating Local FM Awareness Events
• Event check-off list start to finish
• Buy Door Prize Tickets sign
• Door prize drawing tickets ($1/ each or 6 for $5)
• Donation sign
• Receipt book for donations
• Support Fibromyalgia Research Petition

An NFMCPA External Events Agreement is available here.  To order your free Awareness Day Event kit, please send an email to info@fmcpaware.org.

An NFMCPA External Events Fundraising form can be found here.

(Fundraising is not required to receive the free Awareness Day Event Kit.  Donations and fundraising are always appreciated – but we don’t want that aspect to hold you back from creating your great event in your community.)

*Table top kits do not contain tickets or ticket signs.

Fibromyalgia Awareness Day Community Picnic Event 

A specific Community Picnic check off list created by the NFMCPA offers instructions to volunteers about how to host a FM Awareness Day Community Picnic.  The information includes suggestions on how to garner local sponsorships such as donations of food items; paper products (plates, napkins, etc.); prizes for old-fashioned picnic appropriate games, i.e., three-legged races, balloon toss, etc.; media awareness development such as local newspaper, radio and television coverage; FM informational brochures and reusable table top posters promoting the “CARE & Make Fibromyalgia Visible” theme.  A Petition for Fibromyalgia Research to find a cure and treatments is part of a larger ongoing effort to send a united message to national legislators and policymakers.

Fibromyalgia Awareness Day – Shopping Malls, Health Fairs, Farmers Market, Table-Top Exhibits

Putting a special emphasis on reaching out beyond the FM community to educate the general public about FM, the NFMCPA is suggesting that people consider hosting an FM Awareness table at a public location frequented by crowds of people.  Most cities have shopping malls that allow community-sponsored nonprofit awareness events. The NFMCPA offers the Fibromyalgia Awareness – Shopping Malls, Health Fairs, Farmers Market and Other Public Venue Event Kit.  If your local area does not have a shopping mall or the management doesn’t allow information tables, then think about scouting out local health fairs, farmers markets, libraries, grocery stores, exercise gyms, etc, to inquire about setting up a Fibromyalgia Awareness Information table.  The Event Kit gives you everything you need to create this type of outreach, including a special check off list for this activity.  Visit here for more information.

Fibromyalgia Awareness Day Walk to CURE FM

The NFMCPA has once again posted information regarding how to hold a local Walk to CURE FM Walk.  NFMCPA’s excellent Guide to Creating Local Fibromyalgia Awareness Events is now available at www.fmcpaware.org website for easy access. Walks are just one of the components listed in this guide which details several options for people who want to host a May 12 Fibromyalgia Day Awareness Event.  If you’d like to create a public FM awareness Walk to CURE FM, new materials offer ideas to involve others in promoting the walk to the general public.  The Walk to CURE FM Check-Off List includes ideas on reaching people outside of the FM Community to participate in this type of advocacy event.  The Guide to Creating Local Fibromyalgia Awareness Events is currently readable on the NFMCPA website, but hard copies of the publication are available for use by NFMCPA constituents and advocates.  A free Walk to CURE FM Event Kit is available on the website and includes a copy of the Guide.

State Legislature Visits – Proclamation and Resolution Program (USA only)

The NFMCPA Legislative Proclamation and Resolution Program is available on the website at http://www.fmcpaware.org/proclamation-and-resolution-program-a (under Community, then Awareness Day).  The information can easily be downloaded and made usable by NFMCPA constituents.  As in past years, people with fibromyalgia and their loved ones will be encouraged to approach legislators to recognize May 12 Fibromyalgia Awareness Day.  Advocates are encouraged to collect support signatures from the public that can be sent to elected officials to illustrate backing from voters.  The NFMCPA plans to build on this public awareness format through 2013 and beyond in an effort to spread CARE to Make Fibromyalgia Visible Campaign.  Click here for more information.

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The observance of International Fibromyalgia Awareness Day, officially May 12, can take many forms.  The 2013 theme – “CARE & Make Fibromyalgia Visible” – encourages people to contribute, advocate, participate in research, and educate others about fibromyalgia.  This day brings people with FM and their communities together around the world.

C.A.R.E & Make Fibromyalgia Awareness

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The National Fibromyalgia & Chronic Pain Association encourages organizations worldwide to make fibromyalgia visible by increasing awareness and understanding during May and on May 12 Fibromyalgia Awareness Day.

To download free logo to use in signatures, on webpages, or wherever you like, Click here.

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The Walk to CURE FM national walks are spreading.  Join or start a walk in your community!  Click HERE. Questions about the Walk to CURE FM?  Experience with creating a walk?  Please share your thoughts on the community tech support forum.  Thanks!

PLEDGE TO CARE

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Family members, friends, and healthcare providers can show their support for those with FM by taking the NFMCPA’s Pledge to Care.  Those who take the pledge with have their first initial, last name, state and country listed on our “We Care” page, along with name(s) of individual(s) they are honoring.  Click Here!

Give through LIGHTS OF HEALTH

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Wherever you are let your light shine at the National Fibromyalgia Awareness Day Event.  Whether you will be there in spirit or in person, you can sponsor a candle in honor of yourself or a loved one living with FM.  Click Here!

AWARENESS EVENTS AROUND THE WORLD

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Fibromyalgia events are held in many places.

 To join an event near you, please locate the “Awareness Day Events” button below the map.
(US – to post your event, please Click HERE!)
(International – to post your event, please Click HERE!)

Six Word Fridays: WAVE

six word fridaysThe Six Word Friday prompt this week is WAVE – (Wave hello. Or good-bye? Ride the wave ~ literally. Or figuratively. Heat wave. Wave the flag – white or any other color!)

The challenge with this kind of post? To keep each line I write to only SIX {6} WORDS!! (we don’t count the number of lines, syllables or letters…just the number of words!).

Examples have included:

  • Six word photo caption
  • A verse, each line composed of six words
  • A story, told six words at a time
  • A six word quote {or six words of a quote}
  • A wish {a musing, a lesson…anything at all!}

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I used to be a lawyer.
I used to be a student.
I used to be a croupier.
I used to have boundless energy.
I was able to do anything.

Then an all-encompassing purple wave
took control of my life – FIBROMYALGIA!

Fibromyalgia has stolen my old life –
I am fighting to get it back!

purple wave

 

A Life of PURPOSE

In 2008, I hit depression and it hit me back – in fact, it sucked the air out of my lungs, swept my legs out from under me, vacuumed my head of any reasonable thoughts and sat me, quite firmly, on my arse! Supposedly, this was all brought on because I was working full-time in the casino (an intrinsically depressing place at the best of times), while studying part-time for my law degree.

Anyway, at the time, I thought it was because I had no PURPOSE – I was stuck. I had 3 years to go with my degree. I had a mortgage. I couldn’t really look for a meaningful change in career quite yet.

I stuck it out (with a couple of extended pauses in there) and graduated with Honours (just HAD to put that in here!) at the end of 2010. I thought that the noble profession of law would be my PURPOSE.

Well, I only got to practice for one month before my body said: “Tee Hee, ready for the next hurdle?”

So, here I am.

Under legislation, I am not allowed to practice unsupervised for 2 years, but it seems that I can’t work for some-one because I can’t be relied upon for scheduled work days/times. My employer has been very considerate and co-operative in regards to my condition. We have tried different combinations (eg: 3 hours x 3 days per week in the afternoons, working on the weekend when there are no distractions or noise, working late at night when I seem to be less distracted) however none of these have worked on a consistent basis. I cannot envisage how I can maintain employment with this thing called FIBROMYALGIA.

So, once again, I am confronted by what my PURPOSE might be…

Getting up at a ‘normal’ hour is mighty difficult when there is no reason to be up at that time. Sitting on the couch until some-one can pick me up to take me out is hardly meaningful. Scheduling when to shower so I have enough energy to walk to my doctor’s appointment is not inspiring. Playing with my nieces and nephews will not change the world.

Now, that’s it. My psychologist and I have chatted about this topic. She said maybe my legacy would be via my nieces and nephew? But, to me, that’s not good enough – I want to do something big. I NEED to do something worthwhile (not that the kids aren’t worthwhile). I want to DO something, like discover penicillin or change laws.

Right now, my entire being seems dedicated towards making people aware of the word FIBROMYALGIA – it is my theory that if we can get the word out there, people will start asking about what it is…THEN we can start spreading information.

The Visible ButterflyThat’s part of the reason I have started some of my awareness projects: the intention behind the VISIBLE Army was to have everybody upload their photos to their profile pictures so that friends (and friends of friends) would start seeing the Word. header

With our THUNDERCLAP, I really don’t expect (although I’d really like it if) everyone uploaded the cover photo attached to the Thunderclap message but, even if they don’t, at least, the Word will be spread to as many people as possible. (Have you supported and/or promoted our Thunderclap yet?)

FCKI have recently started FCK: a directory of Bloggers who educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia. Yes, the logo may be confronting and controversial (most people can’t help but add a ‘U’) but I think it’s about time we start ‘branding’ our awareness campaign. We NEED to stand out! We NEED people to take notice. We NEED people to ask what it is. So, I’m hoping that as the directory grows and more people share the link, more people will see the banner and actually ask about it.

I guess we all need a purpose…

Making the Invisible VISIBLE!

We have over 700 members of the VISIBLE Army at the moment. Not all members use their photo as their profile pictures on Facebook, Twitter, etc. and that’s understandable.

visible army butterfly

BUT I am asking everyone to upload their VISIBLE Army photos to their profile picture on the 12th of EVERY month, until May, when we do it for the whole month of May (International Fibromyalgia Awareness Day is May 12), to encourage and support Fibromyalgia Awareness.

No VISIBLE Army photo? Join now by following the instructions; or, if you are having a problem with the template, message me, with a photo, on my Facebook page.

The VISIBLE Army

You may or may not have noticed that there has been a new page added to this blog – The VISIBLE ARMY. It is a page full of photos of people (and one teddy bear) trying to spread awareness about our condition.

Not everyone on the page suffers with FM. Some of the people are people we rely on to get through the day –  they are our friends, family or anyone else who supports spreading awareness of our condition.

So, please add your picture and/or the pictures of your support networks and make us all VISIBLE!

If you’re a Facebook person, I am asking you to update your status with a picture like this:

  • Open the picture template

  • Your computer will ask what you would like to do with the presentation – You want to OPEN it.

  • Once open, you will want to INSERT a lovely photo of yourself.

  • Then press 1) FILE; 2) SAVE AS, then pick a name & save it as type *jpg.

  • You can then upload it to your status and you’re ready to spread awareness

You can also post your picture to my Facebook page. All the photo are also on the VISIBLE ARMY page of this blog.

Everybody can spread FM awareness – not just people with FM!