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…

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

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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!

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.wordpress.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.

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 page, blog, Fibromyalgia 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.

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!

Need to laugh? See more FibroModem Girl.

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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

 

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.

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.

A Busy Day

Phew! That was one very busy day!

Not only did we have the very early, very loud, children’s birthday party; but, a group of very lovely women from the Facebook page Fibromyalgia MELBOURNE, Australia met up for lunch at the Burvale Hotel – a little out of my way but well worth it; and I really hope we can do it on a more regular basis.

Once again, I will repeat that personal contact (as opposed to cyber contact) is really important for all of us – no matter how okay we think we are doing by ourselves.

A Search for Value

Every 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?

Voting is ON for the Feeling Fibro Fotos Competition

These are all the entries in the Feeling Fibro Fotos competition – they are in alphabetical order of title, and linked to the voting.

We are searching for the cover of the

International Awareness Day issue of

LIVING WELL WITH FIBROMYALGIA,

so if you have a favourite,

click on the photo of your choice to go to its voting page.

You can vote on one photo per 24 hour period – so you can vote for your favourite every day or vote for a different photo every day…

Help choose our next cover.

A painful moonlit night backdrop, with a quote about pain by Ovid juxstaposed in front.

Even though some days are gray the little bit of sunshine keeps my pain away.

Even with all the on-line support, I still feel alone.

I found this statue by the side of the road – some-one was throwing it out because it had one broken wing. I picked it up because it reminded me of me – slightly broken. It was still of value – just like me!

Fibromyalgia makes me feel like i am living in a black and white world. No colors in between. My “flare ups” are either there or not. Life is either good or bad!

A Mixed collage of photos I took Summer 2012. Trying to smile through bright, burning pain, wonky eyes needing corrective lenses sometimes and not others, trapped in a body I outgrew which has outgrown me, sun damaged, and feeling like a living weed on the side of the road all while searching for the beauty in, of, and around me.

This spider, having been crushed, legs twisted and broken, tells how I feel both mentally and physically at the hands of Fibromyalgia. Both my body and my spirit often feel they are being crushed and broken by the chronic illness than cannot be seen.

This pic I took reminded me that fibro can be foggy and confusing and scary at first and then there comes understanding and some light and hope. The clearing in the picture reminds me of the good days while the darkness reminds me that I am still struggling. The entire picture reminds me of how powerful this illness is but also how there is a calm even on cloudy days. My hope for a cure remains the big picture but my daily struggle reminds me to have acceptance of my limitations and this picture reminds me of the powerlessness we all have during a storm.

My insight after 35 years with Fibromyalgia

When I am really suffering, all I want to do is curl up into a ball and disappear…to make the hurt stop.

Just took it a couple of mornings ago, and just like it feels, dark, but with a wee rainbow and sunny spots…

This is how fibro makes ME feel

I made this photo with 2 people that I love that also suffer!

Fibro fog (cloudy in the head, Trying to find the opening in the clouds.)

Fibromyalgia may want to bury me under heavy pain but I will always, with a smile fight back and stand tall.

My 35 years of struggle with this disease gives me some insight to share

Fibromyalgia makes you feel like someone has plucked out your petals!!

We are like the mighty oak as we learn to weather the aches and pains with this thing called Fibromyalgia. We bend and moan as our bodies change. But we must never give up ….there’s always HOPE.

This is the emotion and pain I feel living with fibromyalgia….but I refuse to let it take over! I am a fighter!

Many days living with Fibro is like looking at life after a fog has rolled in and nothing is clear.

A foggy morning over the city much like my brain is every morning and all day!

There are days my body feels as fragile as a rose can be as the petals begin to fall off but there other days I feel as strong and beautiful as the rose looks in my picture. My husband gave me these for my birthday and rather than photographing the entire bouquet, I saw something in this rose I captured.

I have met so many amazing Warriors ~ Living Life Around the World.

In the Horsham FMS Support Group we accentuate the positive. The Charity, ‘Fibromyalgia Support for Surrey and Sussex’ held a photo competition ‘Fun with Fibro’ for Fibromyalgia week in September. This was our entry. The photo was taken with blank cards and manipulated by adding the lettering, balloons and our mascot teddy, to give a festive effect. We may be ill but we look well and enjoy a bit of fun.

this is before I had fibro its how I feel now happy would like to be free of pain but the way I see it is there are people worse off than me so just be happy with your lot

What keeps me going – the beauty of outside even when it’s cloudy with the sun shining giving hope that eventually it will clear and the day will be good.

Blah….and when i say ‘blah’, i mean “don’t mess with me!

cotton wool mixed with broken glass, i just want to be wrapped up in bubble wrap so it doesn’t hurt!

How Fibro makes me feel.. I am a cosplayer Tony Stark crafts his Iron Man suit and becomes a butt kicking super hero! I craft my Fem Iron Man cosplay and become a powerful, fibro-stomping avenger! There are many cosplayers and many reasons to cosplay. I am a cosplayer and my reason is so that I am no longer a fibro!

Young a mom a wife … Also a fibro fighter!

People always look at me like I’m crazy when I get out in the handicap parking because they don’t understand the invisible disease… But I am not a victim… I am a survivor!

Sometimes I feel like an old barn, but then I look up! There are blue skies!

Our pain has more layers than anyone else can understand

Fire Inside Body Roaring Obsessively

We both have fibromyalgia so we know how each other feels. I am 46 and my child is 13. We try really hard to not let this lifesucking disease suck the life out of us. I love you punkin, sorry I passed this awful disease on to you daughter. She did my makeup and I did hers. We try to have fun.

Once a week, this is all that is left over after filling my dosette set.

Fibromyalgia would be easier to cope with if it were terminal but instead it is a life sentence, not a death sentence and all I ask is WHY? (Por Que?)

Without being pregnant fibro has changed my life, so now I have a bean in me my days are alot harder. Pain is a very tough thing to have to deal with everyday, and harder when people really do not understand what you are going through. This is my first child and I am super excited to meet my little one …I really want to spread awareness of this invisible illness.

I was having a rather down day and had dropped a friends children off at school and decided to go the long way home when I drove past this cemetary. I stopped when I saw the rays of light coming thru the trees and fog and instantly felt hopeful. Like it was ok I was having a bad “foggy” day because, in just a little while, if i stuck it out, the sun would shine thru again. I ran home, got my camera, and took this pic. Its now my background on my computer to remind me.

The sky represents my flare, and the boat is represents how I want to escape from the pain.

I do manage to muster a little smile on some days

Once in a while, I can push the pain aside and be sassy

Fibromyalgia constantly makes me feel like I am being run over by a truck..or in this case, my cat, but I always manage to keep going.

Fibro makes me feel as if the sun is already setting on my life.

As a person who has Fibromyalgia this picture describes best how I feel. Stripped. Stripped of all the things I enjoy in life, unable to enjoy what I love. The River, Long walks, running, sleeping and pain free.

As the days go on some may be rough but I keep my hope and push on, even if I don’t feel like it.

Trapped on the inside

It is like trying to find your way out of the forest on a bad day, the slight bit of colour is hope you’ll find you’re way out.

Fibro makes me feel all mixed up! Like I’m 2 people! I have to help my other self along and tell her she will be ok if she just pushes herself just a little more! Sometimes I push too much but we gotta keep going or we will give into depression and sadness! Sometimes it helps to have the other self to help! GO SELF!!!!

Fibro makes me feel as if I’m on a journey down a path full of twists and turns and the final destination is unclear.

Picture of a person with fibromyalgia trapped in her own home.

My photo depicts how I feel when the fog clears for a moment and the pain stops, which is rare but a cherished moment. I look forward to that everyday. I took this picture on a beach in the Bahamas after a yoga session. I sat there watching the sun peek through the clouds and 2 ships sailing off to sea, it was a calming peaceful moment. I chose to focus on the positive part of this journey for one day there will be a cure.

Left all alone and there is nobody left to catch me, you’ll be my angel there to catch me when I fall. – Dedicated to my husband Leland Rager.

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)

Related articles

• Announcing…FibroModem Fibro Forum (fibromodem.wordpress.com)
• Feeling Fibro Fotos TODAY! (fibromodem.wordpress.com)
• Feeling (VERY) Fibro (Fotos Competition) (fibromodem.wordpress.com)

 

‘Pissed-Offed-Ness’ – My Current State of Being

So, I’m running a little photo competition called Feeling Fibro Fotos. So far, it’s been quite successful – we have 55 entries!

However, the stupid bloody website, that I so idiotically chose to host the competition – Photoscramble.com – is so incredible moody that I can quite confidently say that it has hit menopause and is still ‘lucky’ enough to continue menstruating!

It chooses when people can upload photos.

It chooses when I can actually see those photos.

It chooses when you can see photos

It chooses if I am allowed to approve photos.

It chooses if I wish to delete photos (and only because entrants are having so much trouble uploading their entries, some are doing it twice!)

Right now, I’m remembering the previous competition that I tried to run – the International Fibromyalgia Awareness Day Video Competition - and all the problems that came from that; and I am once again ready to NEVER do this to myself again.

Will one of you people remind me of this the next time I come up with another bright idea, please?

Related articles

• Feeling Fibro Fotos TODAY! (fibromodem.wordpress.com)
• Feeling (VERY) Fibro (Fotos Competition) (fibromodem.wordpress.com)

 

Feeling (VERY) Fibro (Fotos Competition)

So, today I am emotionally (you’d notice from the last couple of posts) and physically spent, so I won’t be offering anything deep and meaningful.

There are 5 days left for you to enter the

Feeling Fibro Fotos competition

What you need to do

• Take a photo that represents how you feel about Fibro, or how Fibro makes you feel and upload it in digital form HERE
• There are 5 days left to upload your photo (you can upload 3 photos).
• The winner will be decided by a public vote (voting is open from November 23^rd to December 12^th), so spread the link to the competition (and your photo) to your family and friends.

The winning photo will be featured on the cover for the March issue (the International Fibromyalgia Awareness Day issue) of LIVING WELL with FIBROMYALGIA

All photos must fit within the theme of ‘What Fibromyalgia means to me’ or ‘How Fibromyalgia makes me feel’ to be considered in this competition.

1. Participants are permitted three (3) entries per person
2. Entries must be submitted between November 12 and 11.59pm November 22, 2012.
3. All entries must be original (with copyright ownership) digital images.
4. Entry is open to anyone (not just Fibromyalgia sufferers!)
5. Voting begins on November 23, 2012 and continues until December 12, 2012
6. All dates and times are EST.
7. The winner will be decided by a public vote.
8. One vote per person per day is permitted.
9. Participants are encouraged to share the link to the competition and to their entries with family and friends.
10. The winner will be announced on December 13, 2012

Here are the entries so far:

A painful moonlit night backdrop, with a quote about pain by Ovid juxstaposed in front.

Even though some days are gray the little bit of sunshine keeps my pain away.

Even with all the on-line support, I still feel alone.

I found this statue by the side of the road – some-one was throwing it out because it had one broken wing. I picked it up because it reminded me of me – slightly broken. It was still of value – just like me!

A Mixed collage of photos I took Summer 2012. Trying to smile through bright, burning pain, wonky eyes needing corrective lenses sometimes and not others, trapped in a body I outgrew which has outgrown me, sun damaged, and feeling like a living weed on the side of the road all while searching for the beauty in, of, and around me.

This pic I took reminded me that fibro can be foggy and confusing and scary at first and then there comes understanding and some light and hope. The clearing in the picture reminds me of the good days while the darkness reminds me that I am still struggling. The entire picture reminds me of how powerful this illness is but also how there is a calm even on cloudy days. My hope for a cure remains the big picture but my daily struggle reminds me to have acceptance of my limitations and this picture reminds me of the powerlessness we all have during a storm.

My insight after 35 years with Fibromyalgia

This is how fibro makes ME feel

I made this photo with 2 people that I love that also suffer!

Fibro fog (cloudy in the head, Trying to find the opening in the clouds.)

Fibromyalgia may want to bury me under heavy pain but I will always, with a smile fight back and stand tall.

My 35 years of struggle with this disease gives me some insight to share

I have met so many amazing Warriors ~ Living Life Around the World.

In the Horsham FMS Support Group we accentuate the positive. The Charity, ‘Fibromyalgia Support for Surrey and Sussex’ held a photo competition ‘Fun with Fibro’ for Fibromyalgia week in September. This was our entry. The photo was taken with blank cards and manipulated by adding the lettering, balloons and our mascot teddy, to give a festive effect. We may be ill but we look well and enjoy a bit of fun.

Hanging on!!!

this is before I had fibro its how I feel now happy would like to be free of pain but the way I see it is there are people worse off than me so just be happy with your lot

Blah….and when i say ‘blah’, i mean “don’t mess with me! :)

How Fibro makes me feel.. I am a cosplayer Tony Stark crafts his Iron Man suit and becomes a butt kicking super hero! I craft my Fem Iron Man cosplay and become a powerful, fibro-stomping avenger! There are many cosplayers and many reasons to cosplay. I am a cosplayer and my reason is so that I am no longer a fibro!

Young a mom a wife … Also a fibro fighter!

People always look at me like I’m crazy when I get out in the handicap parking because they don’t understand the invisible disease… But I am not a victim… I am a survivor!

Our pain has more layers than anyone else can understand

On a really bad flare up day this is what I would like for my husband to do to Fibromyalgia, so we could blast it away forever and make so many people feel better!

Once a week, this is all that is left over after filling my dosette set.

Without being pregnant fibro has changed my life, so now I have a bean in me my days are alot harder. Pain is a very tough thing to have to deal with everyday, and harder when people really do not understand what you are going through. This is my first child and I am super excited to meet my little one :)…I really want to spread awareness of this invisible illness.

Fibromyalgia constantly makes me feel like I am being run over by a truck..or in this case, my cat, but I always manage to keep going.

I do manage to muster a little smile on some days

Once in a while, I can push the pain aside and be sassy

Fibro makes me feel as if the sun is already setting on my life.

As a person who has Fibromyalgia this picture describes best how I feel. Stripped. Stripped of all the things I enjoy in life, unable to enjoy what I love. The River, Long walks, running, sleeping and pain free.

As the days go on some may be rough but I keep my hope and push on, even if I don’t feel like it.

Fibro makes me feel as if I’m on a journey down a path full of twists and turns and the final destination is unclear.

Do you think you can do better? Got a different idea/view of fibromyalgia? Why not spend some time being creative?

Related articles

• Feeling Fibro Fotos TODAY! (fibromodem.wordpress.com)
• Say CHEESE…Click! (fibromodem.wordpress.com)
• 10 Reasons To Increase Fibromyalgia Awareness (fibromodem.wordpress.com)

Feeling Fibro Fotos TODAY!

Today is exactly 6 months from the last International Fibromyalgia Awareness Day; & 6 months until International Fibromyalgia Awareness Day 2013.

 

Today is also the beginning of the

Feeling Fibro Fotos competition.

What you need to do

• Take a photo that represents how you feel about Fibro, or how Fibro makes you feel and upload it in digital form HERE
• You have 10 days to upload your photo (you can upload 3 photos).
• The winner will be decided by a public vote (voting is open from November 23^rd to December 12^th), so spread the link to the competition (and your photo) to your family and friends.

The winning photo will be featured on the cover for the March issue (the International Fibromyalgia Awareness Day issue) of LIVING WELL with FIBROMYALGIA

All photos must fit within the theme of ‘What Fibromyalgia means to me’ or ‘How Fibromyalgia makes me feel’ to be considered in this competition.

1. Participants are permitted three (3) entries per person
2. Entries must be submitted between November 12 and 11.59pm November 22, 2012.
3. All entries must be original (with copyright ownership) digital images.
4. Entry is open to anyone (not just Fibromyalgia sufferers!)
5. Voting begins on November 23, 2012 and continues until December 12, 2012
6. All dates and times are EST.
7. The winner will be decided by a public vote.
8. One vote per person per day is permitted.
9. Participants are encouraged to share the link to the competition and to their entries with family and friends.
10. The winner will be announced on December 13, 2012

How Deep are Grassroots?

The Honourable Tanya Plibersek MP is currently the federal Minister of Health.

The Honourable Tanya Plibersek was elected to the Australian Parliament as the Federal Member for Sydney at the 1998 federal election. Since then, she has been responsible for a range of portfolios including childcare, work and family, women, youth, human services and housing.

As Minister for Health, Ms Plibersek holds overarching policy and coordinating responsibility for issues pertaining to the portfolio, including high level responsibility for the portfolio’s responsibilities relating to Council of Australian Governments’ reform agenda, and has specific administrative responsibility for (according to the Australian Government Department of Health and Ageing website):

• Medicare benefits;
• hospitals;
• medical indemnity;
• private health insurance;
• health workforce issues (including policy oversight of all areas of workforce distribution, education and training);
• the Pharmaceutical Benefits Scheme;
• pharmacy issues;
• population Health, including issues concerning BBVs/STIs including HIV/AIDS, and other communicable diseases, immunisation, obesity, specific women’s health issues, environmental health issues and drug abuse reduction;
• eye health;
• national health priorities;
• rural and regional health;
• biosecurity and bioterrorism;
• diagnostics and technology;
• e-health;
• tobacco;
• human cloning and stem cell research;
• health and medical research; and
• asthma.

Many responsibilities in this list relate to FM. As such, should we want to take our awareness campaign to a federal level, Ms Plibersek is evidently the person to contact.

Additionally, in her first speech to the House of Representatives, Ms Plibersek spoke of her strong interest in social justice and her conviction that ordinary people working together can achieve positive change.

Our newest project involves demonstrating how ordinary people working together WILL achieve positive change: WE are the ordinary people; and we will be encouraging our government to establish effective protocols for the treatment of Fibromyalgia.

So, what is this project? A petition to the Honourable Tanya Plibersek MP – Minister for Health (as follows):

To the Hon Tanya Plibersek MP,

Fibromyalgia is a condition that affects 2-4 per cent of the population. Currently, health care providers lack understanding, guidelines and treatment protocols to effectively treat Fibromyalgia.

Further, the general public has no understanding of Fibromyalgia. Due to this lack of awareness, millions of people are suffering EVERY DAY with this debilitating syndrome – they just don’t know what to call it! And most doctors are unable (or unwilling) to diagnose the condition.

Fibromyalgia does not only affect its sufferers, but also the family and friends of anybody that is unlucky enough to have this condition.

We, the undersigned, stress the need for the Department of Health to provide effective protocols for the treatment of Fibromyalgia. It is time for positive change in healthcare for all Fibromyalgia sufferers and their families in Australia.

To sign this petition, click here.

It’ll just take a minute!

Every single time that some-one signs this petition, Ms Plibersek will receive an email. If she, like so many others, has never heard of FM, she will now!

Once you’re done, please ask your friends to sign the petition, or share it on Facebook, as well.

Grassroots movements succeed because people like you and I are willing to spread the word!