♩♫ 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.

doses

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!)

lrg_Ornamental_Divider__Englische_Linie

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.

My Final Fibro-my-Appeal

It’s the last day before the Make Fibromyalgia VISIBLE Thunderclap goes off!

For those who have no idea what I’m talking about: this is NOT a Facebook page or website specific project – so I have been hoping that this will be supported by ALL of us!

I started a(nother) Fibromyalgia Awareness initiative in which I would be honoured if EVERYONE would get involved: it’s called a Thunder Clap.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have!), 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:

Clap 1

 

As of when I wrote this, we have 704 supporters with a potential social reach of 228,394 people.

What is THIS Thunderclap?

clap 2

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

The message will be published on every supporters’ Facebook page and/or Twitter feed on May 1st at at 12:00 AM 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 with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

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

clap 4

4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

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!

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!.

And REMEMBER please:

It’s Like Thunder(Clap)!

If you follow my Twitter or Facebook page, you will know that I have been nagging everybody to support and promote our ‘Make Fibromyalgia VISIBLE’ Thunderclap; and with 14 days to go, it’s time I started nagging you!

I REALLY want to hit 200,000! Please help.

I REALLY want to hit 200,000! Please help.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have blitzed!), 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:

Clap 1

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!

clap 2

Click on this picture to support and promote the Thunderclap.

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

Click on this picture to get full-size header to save and upload to your cover photo.

The message will be published on every supporters’ Facebook page and/or Twitter feed (because we have reached the goal number) on May 01 at 12:00 AM 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 with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

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

clap 4

4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

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!

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!

Happy Birthday to All of Us

Hello my little family of Fibro friends,

Today, I received a notification: I have been with WordPress for 1 whole year; which means today it’s our birthday. And I say ours because if it wasn’t for our little band, I probably would not have continued to blog every day or maintained my vigilance with our awareness projects.

So, I figure that now is the perfect time to have a run-down of our current projects, set some goals for the next year while promoting those projects to those of you who have not gotten involved…

The VISIBLE Army 

Become part of the Fibromyalgia VISIBLE Army! Join another 898 soldiers (with and without FM) who are fighting to bring awareness to our invisible condition.

If you haven’t already joined, visit our page of templates, insert a fabulous photo of you, then post your new profile picture to my Facebook page so I can add you to the gallery on this website, Pinterest and the FB gallery.

Visible army squareOriginally, the idea for the photos was to have you all upload them to your profile pictures. I understand some of you hesitated in uploading your VISIBLE Army photo, as FM is NOT your whole world (for some of you); but the idea for all the photos was to encourage other people to ask questions.

So, on March 12th (just passed!) and April 12th – I am asking you all to upload your VISIBLE Army photo for the whole day. Then, for the entire month of May (May 12th is International Fibromyalgia Awareness Day), you keep your VISIBLE Army photo as your profile picture.

Thunderclap!

Thunderclap is a tool that lets a message be heard by saying it together.

When we reach our goal number (and we already have!), Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time!

Our message is set to ‘go off’ on May 1st. The message that will appear is: Make Fibromyalgia VISIBLE (for the whole of May) with this Facebook cover photo http://thndr.it/VaVZqZ

The cover photo that we are asking everyone to upload, to turn Facebook purple is:

header

Right now, we have 269 supporters and we will reach 87,210 people on May 1st.

This is one time when you really can make a difference. Visit our Thunderclap and choose to promote and/or support it on Facebook and/or Twitter. I think it is quite realistic to have a current goal of a social reach of over 200,000! Help make it happen!

FCK

FCKProvocative, isn’t it?

FCK stands for Fibromyalgia, Community, Knowledge. It is a directory of bloggers who educate, support, inform, inspire & motivate people about & with Fibromyalgia.

I chose the acronym deliberately, not to offend but, to make people take notice.

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.

Fibro-Knowledgeable Doctors

We all know how difficult it is to find an understanding and knowledgeable doctor. You may not have noticed but we currently have a page called Fibro-Knowledgeable Doctors. These are doctors who have all been recommended by patients.

For pages like this to work, we need more people to share their recommendations. If you have one (or more), please email me at contributions@fibromodem.com.

LIVING WELL with FIBROMYALGIA

CoverWe have just published our 4th issue of the E-Mag LIVING WELL with FIBROMYALGIA. It is available (for free) by subscription.

Our next issue, out June 1st, is themed TREATMENTS. If you would like to contribute, check out what ‘m looking for HERE.

So, happy birthday to us; and keep spreading the awareness!

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…