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!

Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

images

Related Articles:

THUNDERSTRUCK!

In my eternal search for ways to make Fibromyalgia stand out and get noticed, I have just started a(nother) new Fibromyalgia Awareness initiative in which I would be honoured if you would get involved: it’s called a Thunder Clap.

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 I have made it quite low so the message will get out there whatever happens!), 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

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 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 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

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!

FibroDaily…starring ME!!!

Recently, I was interviewed for FibroDaily’s Fibro Warrior of the Week. The post came out today and WOW! I sound great (even if I do say so myself!) You can see the interview HERE; or just read my copy and paste…

FWOTW

Our fourth FWOTW is nothing short of a triple fibro threat! Simone (aka FibroModem) does more to give back to the fibro community than just about anyone. Between blogging, creating her cartoon, running her online fibro awareness store, and promoting her Visible Army campaign, she hardly has time for flare ups! Most of all, we love her ability to find humor in fibro, make us laugh, so maybe we can even forget about it for a minute. -FD


FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.

Simone: I was born and bred in Melbourne, Victoria in Australia. I am single, live alone and I have Fibromyalgia. I was 40 before I had even heard about Fibromyalgia.

I used to work in hotels, on cruise ships and in casinos. Then I decided (at the age of 34) that this kind of work was not challenging enough so I spent 6 years working (in the ‘real’ world – Crown Casino) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver!)

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

Finally, with the help of my family, drugs and counseling – graduation!

I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

fibro modem butterfly

Unlike many, I have NOT learned to manage this condition (don’t talk to me about pacing! I have too much to do!) so I am not working and I spend a lot of time on my couch sharing my thoughts and attempts at a life with my new friends on Facebook, Twitter and my blog: fibromodem.com.

I love trying and learning new things – I really believe that I can do anything! So I try everything (and there’s the reason we won’t talk about pacing!) I love my nieces and nephews (and their parents) beyond anything I could ever imagine. I love my Mommy – who is the best and most supportive mother (and person) in the entire world. And I love being able to link up with people all over the world to support each other.

FD: When did you first suspect that something wasn’t right? What happened?

Simone: In about 2007, about halfway through my (mature-age) studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver).

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

With the help of my family, drugs and counseling – graduation! But I never got back to full throttle.

I was only able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA! I believe that the depressive episode was the beginning of my fibro onset.

FD: When were you diagnosed with Fibromyalgia?

Simone: November 2011.

FD: When you received your diagnosis, how did it affect you?

Simone: At the time, I let out a big sigh of relief – I finally had a diagnosis: I wasn’t crazy; but, little did I know that a diagnosis wasn’t going to lead to an immediate, successful treatment.

FD: Since then, how has your outlook on life changed?

Simone: I still believe that ‘it has to get better than this’ so I have not returned to my depression at all (knock on wood!). There just MUST be something out there in the whole wide world that can help – we just have to find it.

The part of fibro that I have appreciated is the time it has forced upon me: time to walk up the street and meet all the local shopkeepers, time to spend time with my nieces and nephews, time to try lots of new things.

FD: How does Fibro affect your day-to-day life?

Simone: I wake up – it feels like my body has melted into my mattress, so it is with great difficulty that I drag myself up and out of bed. Sometime during the night, the bones in my feet broke while I was sleeping (yes! that’s the only description I have for how my feet feel while I try to get them moving in the morning). And up. Head spinning. Need to wrench open door with two hands as power has not been fully restored to my wrists. Guess what? The bones in my hands (what’s the area between your wrists and your fingers called?) were in the same tragic accident as my feet.

fibro modem butterfly

Slowly, I move towards the kitchen for my medication, then to the couch – for about 2 hours – until my body catches up to the waking up process.

I no longer work as I cannot offer any reliability to an employer or clients but I have kept myself busy with my Facebook pageblogFibromyalgia Awareness Shop and Twitter. I have a continuing awareness project called the VISIBLE Army for all sufferers and supporters.

FD: What can’t you do anymore because of Fibro?

Simone: No more playing squash with my father; no more working; no more all day shopping trips; and, limited driving.

FD: Name something you do now that you never would have imagined happening before your diagnosis.

Simone: Lots and lots of things: many of us think we’re stuck – nothing is going to change, this is it, this is my life! But why? There are still so many things we can do – and, for those of us stuck at home, perhaps an opportunity to try something new.

Since being diagnosed, I have:

  • Attended my first burlesque performance
  • Attended my first hydrotherapy class
  • Started my first Facebook page
  • Attended my first Bowen therapy treatment
  • Went to the Doggy beach for the first time
  • Wrote my first Blog post
  • Made my first video
  • Opened my first Fibro awareness store
  • Attended my first Pilates session
  • Attended my first Yoga session
  • Attended my first Tai Chi class
  • Had my 2 year old nephew sleep over for the first time
  • Produced my first cartoon character (FibroModem Girl)
  • Published my first E-mag – LIVING WELL with FIBROMYALGIA
  • Attended my first Shiatsu treatment
  • Attended my first reflexology session

FD: What has been your experience with seeking medical treatment for Fibro?

Simone: The medical professionals, who I have seen, have been very helpful for diagnosis but are too ready to give up – the number of times I have heard ‘that’s all I can do for you’ can lead to depression! We NEED a young, motivated doctor – some-one who is still positive and wants to be the best! some-one who wants to discover new things, who wants to be published, who is willing to experiment with new things! It seems that the older the doctor, the more jaded he has become! We need a few “CHANGE THE WORLD” kind of doctors!

FD: How has Fibro affected your relationships, friends, family, partners?

Simone: I have become even closer to my Mommy AND I have been lucky enough to re-discover a friendship that means the world to me. BUT other than those two relationships, everyone else has disappeared – sad but true.

FD: What is the biggest challenge you face living with fibro?

Simone: Loneliness.

FD: What inspires you to keep on fighting?

Simone: Actually I don’t know – perhaps it is the nagging thought that ‘it has to get better than this!’

FD: What advice do you have for other people who are living with Fibro?

Simone: Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.

Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.

fibro modem butterfly

Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.

Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.

Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.

Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

FD: Do you have a funny Fibro story you can share?

Simone: I find most things funny (mostly in a sad way) so I started a comic called FibroModem Girl – if you can’t laugh, you will only cry!

fibromodem girl - loved ones

fibromodem girl - insurance

fibromodem girl - invisible illness

fibromodem girl - yoga pain

Need to laugh? See more FibroModem Girl.


Follow Simone on Twitter: @Fibromodem
Like Simone on Facebook:  https://www.facebook.com/FMawareness2012

Check out FibroModem online:
FibroModem Blog
Fibromyalgia Awareness Shop
FibroModem Girl

 

A Search for Value

The Visible ButterflyEvery day, I wake up, turn on the computer, check my Facebook page and answer any comments. (Rest) Then I look at my email and answer all of those. (Rest) Pay whichever bills have been scheduled on my Outlook calendar. (Rest) Next is my blog and twitter account. I have to do everything straight away, otherwise I forget.

After all that, it’s probably off to a yoga, hydro or tai-chi class. (Then rest)

Back home, to see if any of you guys have written to me. I will try to work on a blog post or FibroModem Girl. This can actually take a couple of hours – research, learning new stuff and diversions to other new stuff (and, of course, rest periods!)

I explored the possibility of starting a charity, which involved more research and learning; but couldn’t find enough support. This goal is not going anywhere – it may just need to sit on a back-burner for a while.

You have to remember that prior to March, I had never blogged, had a Facebook page, made a video or promoted anything – so I am actually enjoying myself. I love learning.

I also think that what I am doing has an intrinsic value. Yes, all of this is helping me to cope but I also feel like it’s helping other people. I feel that what I am doing has value.

So, trying to forget the pain/fatigue part – am I living a life of value that satisfies me?

Although I value what I am doing, and I hope you value what I am doing; other people (ie: people in ‘real’ jobs or ‘normals’) do not think what I do with my time is worth anything – mostly because I don’t earn any money.

For example, when I have a family dinner and my lawyer/executive producer cousin asks me how I stay busy all day, I have to answer that I just play around on the computer, because he doesn’t understand anything about what I’m trying to do. When I try to explain, that blank expression with a bored nod appears across his features.

Mommy gets what I’m doing but she still stresses about the money side of everything.

I know that I have to think about the money stuff – but right now, I’m unable to work so (and maybe this is the meds talking) what is the use of worrying. I’m kinda lucky because there are no kids or partners to think about BUT I really don’t know what’s going to happen when the VISA and AMEX are full. The Disability Support Pension (and subsequent back pay) was approved but the breathing space has now disappeared.

Despite all of this: I am quite happy (how weird is that?)

So, the question is: (forgetting the pain/fatigue) are you living a life of value that satisfies you? And what are you doing?

You’ve Got Mail (Fibro Reminder)

Wake up

Receive wonderful text message from colleague (who read Scary With You is Better Than Scary Without You) full of support

Gotta email him

Check personal Facebook page

Check Fibromyalgia Awareness Day Facebook page

Answer questions and comments

Gotta email him

Check Twitter

Upload all competition entries to Pinterest

Read 56 e-mails

Answer emails

Gotta email him

Finally received email from Photoscramble

Spend 1.5 hours making and cropping screen shots, and trying to make the competition’s problems understood, then follow the short instructions passed to me

Clear browser cache (as instructed) – didn’t help anything except now I can’t get into the FibroModem Fibro Forum (so don’t be looking for me, there)

Fill shop order and walk to post office

Still haven’t emailed my colleague – getting very anxious → too much to do

Return, exhausted, to filthy house → too much stuff EVERYWHERE – really losing it now

32 more emails received while I was out?

Tidy kitchen

Make two comments on Forumotion Forum so I can have permission to ask how to get back into the Forum

Put on load of washing

Gotta email him

Tidy (sort of) bedroom → can’t calm myself down

Close door to spare room – way too much to do in there → can’t even look at it!

Prepared new page for blog to promote competition entries

Feeling extremely stressed out – really no reason to be stressed, I have nothing planned tomorrow at all. I can do all of this tomorrow. Too much in my head! MUST be the competition → really, really hope it all works! Too much!

Emailed colleague! (Not sure how, as I seem unable to put a full sentence together)

 

The Chosen People

When I made my video ‘Why Me?’, it was supposed to be a tongue-in-cheek title.

Basically, as many people pointed out, FM can happen to anyone – so why not me?

At the age of 34, I embarked on a six-year adventure to study law – my friends wondered why I would do it.

At 40, I graduated, was admitted; but was only able to practice for one month – why me? I asked.

In February of this year, I discovered Facebook pages (rather than personal sites) and I quickly became addicted – my friends wonder why I would do it.

At about the same time, I discovered the wonderful world of blogging; and in March, I wrote my first blog post. Whoa! Have I come a long way since then. But my friends wonder why I do it.

I cannot even work part-time; I cannot drive more than 10 kilometres; I cannot participate in my favourite activity – retail therapy; I am lucky if I can read one chapter in a book; but, worse than all of that, I experience excruciating pain, forget things most of the time and almost always have a headache. Some of my ‘friends’ think that it is all in my head, others think that I am just being lazy… yes, I am misunderstood. I wonder why my friends do that!

LIGHT BULB MOMENT – I have the answers:

I can research most topics as I studied so much. I can ask questions (no matter how silly) as I learnt that there are NO silly questions – just silly people who don’t ask questions. I can create visual material to raise awareness about FM as I like to think that I am a creative person. I can reach out to millions suffering from FM, force their families and friends to accept and understand them as I have already established a blog, a Facebook page, a Twitter personality and a Pinterest persona. I have a background in hospitality so I will get my International Fibromyalgia Awareness Day Symposium/Luncheon off the ground – even if I have to raise the money myself (one bracelet at a time!)

I am one of the chosen ones – I can combine all my experience to raise awareness of our condition; and touch the lives of many.

If I did not have FM, would I have ever thought of doing so? Would I have even heard of the condition?

So, I know why I have FM. As one of the chosen, why do YOU have FM?

Awards Season

 

Looks like it’s award season again! Oh dear, what shall I wear down the red carpet?

I have received this new award from Faith and Fibromyalgia – inspired by the Sisterhood of Travelling Pants, this is an award for female bloggers to encourage the spirit of sisterhood.

Once again, there are rules:

  1. Thank the giver
  2. Post 7 things about yourself
  3. Pass on the award to 7 other deserving bloggers and inform them that they have been nominated
  4. Include the logo of the award in a post or on your blog

So here we go:

7 things about Me! (What haven’t I told you already?)

  1. When I was little, I wanted to be a maths teacher, then Prime Minister of Australia.
  2. I killed my first pet (a goldfish) with a lamb chop.
  3. I have some amazingly creative ideas but I really need help making them happen (as I don’t have an artistic bone in my body).
  4. I am incredibly passionate about raising awareness about Fibromyalgia (I have a Facebook page, this blog, a Twitter account, a Cafepress store and my new FibroModem store).
  5. I have visited most of the islands in the Caribbean (having worked on Carnival Cruise Lines) yet hardly seen any countries on my side of the world.
  6. I love shopping – just so I know where the best deals are and then I can tell anyone when they need it (I HATE people to miss out on a great deal!).
  7. I absolutely HATE that I have gained so much weight and really hate my body – I refer to myself as the Fat Pig Girl.

7 Deserving Blogs:

  1. Fibro in Your Face
  2. A Girl and her Illness
  3. Chronicles of Fibro
  4. The Silver Lining of Fibro
  5. The Gratitude Project
  6. My View from the Sofa
  7. Living!

Congratulations to all the nominees! You all are truly inspiration bloggers & I appreciate each and every one of you! And thank you Faith and Fibromyalgia.