LIGHT UP the NIGHT

Have you been following my Facebook page?

Have you been checking out my tweets?

I am taking up the LIGHT UP the NIGHT Challenge.

The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue, PURPLE or green.

light up the night

Of course, I’m supporting going all out for PURPLE!

We’ll all be winners but there will be bragging rights awarded to the country with the most photos in each of these categories:
1. # of Public Buildings/Places
2. # of Private Residences

What started as a friendly challenge between Canada and Northern Ireland has now grown to be international. This will be the first time Australia has competed, and I have humbly taken the opportunity to co-ordinate on our behalf. All details are available on the Event page.

The contest will be adjudicated by May Twelfth and final results posted on the May 12th International Awareness Day page.

We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!

So far, I’ve contacted the Arts Centre Melbourne (for the Spire), Parliament House and the Royal Exhibition Buildings in Victoria. I have also tried to contact the Sydney Opera House and the Sydney Harbour Bridge. We have some other groups looking at places on the Gold Coast to light up.

purple

If you’d like to help,

please TWEET any of these:

  • ❤ to see a PURPLE #sydneyoperahouse for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @Sydney_Harbour bridge for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @artscentremelb spire for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @VicParliament House for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE #royalexhibitionbuilding for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • @artscentremelb Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up Spire pls? @Fibromodem #spoonie
  • @cityofmelbourne Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up @artscentremelb Spire pls? #spoonie
  • @cityofmelbourne Turn @artscentremelb SPIRE PURPLE 4 International #Fibromyalgia Awareness Day #spoonie

OR visit their FB pages and leave a message like:

  • The Canadians are turning Niagara Falls PURPLE for May 12 – International Fibromyalgia Awareness Day. Let’s light up the <insert building>

Let’s have fun with this and make this a May 12th to remember!
Int Fibro

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 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.

FM Melbourne

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.

Spring (Carnival) is in the Air

It is Spring Carnival here in Melbourne. No, we don’t celebrate Spring – instead we have a lot of horse races, culminating in the Melbourne Cup Carnival.

Firstly, there is Derby Day (which was this last Saturday), where it is traditional to wear black and white.

Today is Melbourne Cup Day – more of that one later.

Thursday is Oaks Day which is traditionally ladies’ day at the races but it is often referred to as ‘Blokes’ Day’ as all the guys go for a perve.

Then, Saturday is Stakes Day which is a family day at the races.

Cup Day is the ‘carnivale’ centrepiece of the four race-days of Cup Week, with race goers taking a festive approach to the day.

The Melbourne Cup is Australia’s major thoroughbred horse race. It is often called ‘the race that stops a nation.” The Melbourne Cup is a Group 1, handicap horse race run over 3200 metres on the first Tuesday in November at 3.10pm.

The race has been held since 1861 and was originally held over two miles (about 3,218 metres) but following preparation for Australia’s adoption of the metric system in the 1970s, the current race distance of 3,200 metres was established in 1972.

The $6.2 million Melbourne Cup is a truly spectacular event and the focal point of the Melbourne Cup Carnival. While most of Australia stops to watch or listen to the race, there’s nothing like being there amongst the 100,000 plus crowd to experience this truly unique event.

It is hard to convey the sheer scale of Melbourne Cup Day to someone who has not witnessed it before. It is an exciting and exhilarating event where you can experience the pulse of Australia in just one day.

Even for those who are not at the event, there are Melbourne Cup banquets, complete with fashion shows, sweeps, celebrity MC’s, and best-dressed competitions. Basically, Melbourne shuts down.

At around 3 pm (AEDST) the Melbourne Cup is televised to over 700 million people in more than 120 countries. Many more millions listen to the race on the radio or now also many more millions watch it live on the Internet. If you are out and about on the roads in Melbourne city at 3pm on the first Tuesday in November you can be forgiven if you think the world has come to an end, if only for a few minutes.

There’s a story that an English couple who had just emigrated to Australia wondered why Melbourne was such a quiet city, because there seemed to be nobody on the streets. They had arrived during the running of the Cup. This is probably just a good yarn, but there is some truth to it. Ever since the running of the first Cup, the race has been popular with the public. In fact, Melbourne is the only city in Australia and perhaps in the world, which gives its citizens a public holiday for a horse race. It doesn’t happen in country Victoria, just in the city and, it has been happening since 1876. People come from all around Australia, New Zealand, and internationally to participate in, or view this now famous event. This year has seen both Nicole Kidman and Rose Byrne return home for the races; and Prince Charles and his wife Camilla are here for Cup Day.

With the Melbourne Cup prize being the richest prize in Australian sport, racehorses come from all over the world to race in the Cup. Overseas entrants travel by plane in luxurious quarters.

Just before the main race, the National Anthem is performed and for many Melburnians, Melbourne Cup Day is the penultimate sporting day of the year. The Cup itself is crafted by Hardy Brothers Jewellers, and valued at $175,000. Created from 2,340 grams of solid 18ct gold, it takes more than 250 man hours to produce.

It has impressed many visitors to write about it. None more so than perhaps that great American author and humourist Mark Twain ( from Chapter 16 of his book about his journey around the world Following the Equator):

‘Melbourne … is a stately city; it has museums, and colleges, and schools, and public gardens, and electricity, and gas, and libraries, and theatres, and mining centres, and wool centres, and centres of the arts and sciences, and boards of trade, and ships, and railroads, and a harbour, and social clubs, and journalistic clubs, and racing clubs, and a squatter club, sumptuously housed and appointed, and as many churches and banks as can make a living. In a word, it is equipped with everything that goes to make a modern great city.  It … has one specialty… on the first Tuesday in November… business is suspended … and every man and woman, of high degree or low, who can afford the expense, put away their other duties and come. They… swarm in …a fortnight before the day, and they swarm thicker and thicker day after day, until all the vehicles of transportation are taxed to their uttermost to meet the demands of the occasion, and all hotels and lodgings are bulging outward because of the pressure from within. They come a hundred thousand strong, as all the best authorities say, and they pack the spacious grounds and grandstands and make a spectacle such as is never to be seen in Australasia elsewhere… The grandstands make a brilliant and wonderful spectacle, a delirium of colour, and a vision of beauty. The champagne flows, everybody is vivacious, excited, and happy; everybody bets, and gloves and fortunes change hands right along, all the time.

Day after day the races go on, and the fun and the excitement are kept at white heat; and when each day is done, the people dance all night so as to be fresh for the race in the morning. And at the end of the great week the swarms secure lodgings and transportation for next year, then flock away to their remote homes and count their gains and losses, and order next year’s Cup-clothes, and then lie down and sleep two weeks, and get up sorry to reflect that a whole year must be put in somehow or other before they can be wholly happy again.  The Melbourne Cup is the Australasian National Day.  It would be difficult to overstate its importance. It overshadows all other holidays and specialized days of whatever sort in that congeries of colonies. Overshadows them? I might almost say it blots them out.’

But the Melbourne Cup is not only about gambling and horses. Increasingly many people are partaking in it for the fashion, fizzy and food (at boozy banquets).The Melbourne Cup has gained a reputation for fashion with a penchant for drama. It is the day to make your strongest fashion statement with an exotic or outrageous ensemble – hats are essential and so is a yellow rose in the lapel. Each year on this day, Flemington racecourse becomes the play pit for Australia’s most elegant, fashionable and classy.

Fashions on the Field was launched with the objective of ‘finding the smartest dressed women at the Carnival within economic restraints’. Since then the fashion follies of the fillies on the field have captured the imagination of the public and the event has grown rapidly in popularity. Race-goers compete among themselves for prizes awarded for the best dressed. Fashions on the Field can attract as much attention as the race itself with people in traditional formal race wear and others in amusing costumes. The competition has changed the nature of racing forever – fillies and fellas vie for as many awards as the horses.

But, it also witnesses some of Australia’s most drunk and disorderly behaviour. And there are some pretty dire scenes to be had: the girls who stumble out at the end of the day, shoes in hand, and the drunken men who vomit on their best suits!

Despite this, the day is one of buzz and excitement. However, it seems bizarre that on the day of ‘the race that stops the nation,’ only one state is actually given a public holiday.

Melbourne Cup Day could be a fabulous national holiday. It would be a holiday where we could hang out with friends and have a few drinks. Warring families would not have to spend torturous hours together as they do at Christmas. We wouldn’t have to spend frantic days in the lead-up, preparing huge meals and battling late-night shopping crowds. Secular groups (and various religious groups) would not need to conceal their bitterness about being forced to recognise the Christian calendar as they do at Easter. We could sidestep the heated and divisive political debates concerning the invasion of this country (as occurs on Australia Day) and our invasion of other countries (as occurs on ANZAC Day).

Currently, almost all of our national holidays alienate at least one group; indigenous groups on Australia Day, immigrants of countries who fought against Australian troops on Anzac Day, Muslims and Jews at Christmas, and even republicans on the Queen’s birthday.

While many dismiss such complaints as “political correctness run amok” it would still be nice to have one national holiday that could be enjoyed Australia over.

Anyway, I hope you back the winner or draw it in that quintessential Aussie office event, the Sweep.

Spring into the Unknown

So, I still feel awful. I have incredible pain in both my wrists and ankles – it feels like the extra valium, that I took for the MRI, has all surged to my extremities and is sitting there weighing them down. I am so incredibly tired that I napped longer this afternoon than Z, who napped with me.

Firstly, I decide to check if there are any weird drug interactions, so off to http://www.healthline.com/druginteractions to have a look at anything there that could be making me feel this bad.

Hmm…nothing much there (more than normal, anyway).

Could it have been that I am still being affected by my over-doing it all on the weekend?

Could it be this wonderful Spring, Melbourne weather (with one day being a lovely 25 degrees, and the next being 18 degrees)?

Could it be that I’m anxious about my liver MRI results (even though I know there will be no problem because Mr B can cut out whatever it is, whether good or bad)?

Could it be I’m subconsciously stressed by the up-coming surgery (on my gallbladder and, maybe, liver)?

Could it just be?

And, all these questions, could be the reason why I’m still not coping yet (hence the name of my blog)…

 

Nooooo!

 

It’s the last day in Bali – I leave tonight, with an extra suitcase filled with handbags (I bought too many (again!) – anyone in Melbourne interested in buying fake Jimmy Choo handbags (with matching wallets) in the latest Spring colours?), clothes for my

That’s no make-up! Those are my new eyelashes! (Can’t do much about the bags under my eyes)

nieces, nephews, Mommy and I, and all the Bali touristy stuff that my heart desired (Mommy has been VERY generous and she was intent on giving me the best holiday EVER!); with fuller lips, luscious eyelashes and a tan; and a yearning to return very shortly (I have started my investigations into a long-term lease already!)

You will be happy to know that today is filled with massages and sun-worship (with the requisite 30+) before leaving for the airport (Oh, it hurts to even write that!)

Oh, and I also found the Aeroguard!

 

Day 6 in Bali

 

Day 6 was a (forced) day of relaxation.

As I wasn’t allowed to smoke, sweat or go swimming, I spent most of the day, in air-conditioned comfort, napping on and off (the bags under my eyes are out of control – you will only ever get photos of me in sunglasses from now on!)

4.30pm hit – I’m free! I’m free! I lit a cigarette (apologies to all non-smokers) and yelled out to Mommy, who was still hiding from me –

It’s over!! Let’s get out of here!

Now that I had had a nicotine hit, she emerged from her room and took some photos (to share with you – ssh! None of my family know I did this and, as none of them can be bothered to read my blog, they won’t know!)

 

It might look painful – but there was absolutely NO pain, just a lot (and I mean a lot) of swelling. There is still some swelling and bruising but it will all be gone before my return to Melbourne. I will have totally kiss-aliscious lips! Now, to find someone to waste them on…any-one got a cute 30-year-old son? (I like younger men!)

I have found that, as long as I drink enough, my headaches have been less frequent than at home; although the ever-present fatigue is still here (even if I don’t go shopping).

Happily, my sunburn has faded (without peeling, so far) to a lovely shade of brown; although there has been no change with the mozzies and the rooster.

Mommy and I went out to an Indonesian/Mexican restaurant which was fabulous – Taco Beach – with a fabulous range of salsa like; mango-pineapple and papaya-lime, as well as the traditional salsa. A fabulous meal, although they need some work on the frozen margaritas!

Then, a walk to work off the meal, except we found an ice-cream parlour – but we ate our ice-cream while walking!

Finally, I said that it was time to go home (see? I’m trying to pace!) and we hopped in one taxi, where the driver tried to rip us off so we flagged down a different taxi. The first dude wanted to charge us 30,000 rupiah (which is actually only about $3) but the fare was actually less than 10,000 rupiah – we gave the second driver 30,000 anyway. I just don’t like it when they try to rip us off!

Bring on tomorrow – I’m getting eyelash extensions!!!

 

 

FibroModem’s The Meaning of Life

Is the actor from Slum-Dog Millionaire the same actor as the one from The Best Exotic Marigold Hotel?

What is the significance of a white heron?

What does seeing two black crows mean? And then seeing one of their black feathers on the path?

 

These are enough distractions on an all-happening  Saturday night in Melbourne for me to forget to write my blog! Thank you for the internet!

Zip! Zilch! Nada!

I have absolutely nothing to write about.

I have spent the last three very cold, rainy days locked up inside with swollen glands. It started in my throat and now every gland (and I looked them all up on WebMD) is swollen and aching. I had to give away a shiatsu appointment and a reflexology appointment. I wasn’t able to go to yoga, tai-chi or hydrotherapy; and, instead, I have been sitting at home, drinking hot chocolate and eating fairy bread (it makes me feel better!) All the doctors’ appointments are filled up because everyone is sick – Welcome to winter in Melbourne!

Anyway, I have an appointment with a doctor (not MY doctor) today, who will (hopefully) give me something to make it go away, and not just tell me to rest and take panadol (I do that already!)

So, I have nothing of interest to tell you and I can’t find any new and exciting research to share – Bummer!