Fibromyalgia Awareness Crusaderz – Simone of Fibromyalgia Awareness Day 2012

I recently had the amazing chance to interview Simone, the creator of the well known Fibromyalgia Awareness Day 2012 Facebook page, the illustrator of the humorous and very accurate FibroModemGirl comics, and writer of the FibroModem blog! She has also created the “Visible Army” of Fibromyalgia patients! An incredibly strong and brilliant women indeed, we here at Fighterzine had the chance to get to know her. Read on to learn more about her and her incredible Fibromyalgia endeavors!
simoeQ: So tell me a little bit about yourself!
A: “I am single, live alone and I have fibromyalgia. I was 40 before I heard about fibromyalgia. (I should probably add that I’m from Australia).
Previously, I had worked in hotels, on cruise ships and in casinos.
Then I spent 6 years working (in the ‘real’ world) and studying (in ‘academia’) to get my law degree (yes! much later in life than most!). 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!)
With the help of my family, drugs and counselling – graduation!
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. I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!”

Q: How long have you had Fibromyalgia?

A: “I have no idea how or when my Fibromyalgia developed. I do know that halfway through my studies, I developed depression. (Was this the first sign?) The next four years were spent going to doctors because I suffered from joint pain, headaches, exhaustion, insomnia – sound familiar? Finally, in November of last year, my GP sent me to a rheumatologist because my wrists and ankles were killing me and there was nothing wrong (supposedly). I was sick and tired of doctors. I was sick. And I was just plain tired…all the time.”

Simone is incredibly proactive in her treatment, and she treats her Fibromyalgia with a combination of medicines and supplements, as well as hydrotherapy twice a week, rehabilitative yoga once a week, and she makes it a point to get out and walk each and everyday. She has recently completed a rehabilitation course where she was taught to treat herself as a physiotherapist would, and does her own self-massage. She also takes part in reflexology and shiatsu.

Q: What do you like to do in your off time, do you have any pets? Stuff like that!

A: “I LOVE to shop…and it doesn’t have to be my money that I’m spending. I will go shopping with anyone for anything!
I adore spending time with my nieces and nephews – my house is the fun-house  we always have dress-ups here and lots of activities (eg: we made a fabulous puppet theater).
I would love to have a small dog but, as I am on a disability pension, I really can’t afford one – although it would force me out of the house when I’m not feeling motivated.
I don’t really have ‘off time’ as I find it so difficult to relax – so, even if I’m watching TV or totally exhausted, I’ll be searching on the Net for new stuff for my blog or e-mag; or racking my brains for something to write to just keep people slightly entertained.
I keep myself busy now with my Facebook page, my blog, – which FibroModem Girl is the star of – a Fibromyalgia Awareness shop, the new LIVING WELL with FIBROMYALGIA e-mag (available by subscription only on either my blog or FB site), Twitter (@FibroModem) and making videos.
Prior to FM, I didn’t know how to do all this stuff – I love learning; so I taught myself all the different things necessary to make it all work. It is still trial and error.
As you can tell, I really hate being bored!”

Q: What motivated you to start “Fibromyalgia Awareness Day 2012”?

A: “When I was diagnosed, nobody I knew had even heard about this condition. When I went on-line to find information, I couldn’t find anything in Australia. On February 27 of this year, I started my Facebook page. I quickly became addicted and started my Blog, joined Twitter and Pinterest, and started a Fibromyalgia Awareness shop.
Ultimately, it is my goal to start a charity. It is my vision to be an organisation which has a significant & positive influence on the well-being of people affected by FM. I would like to encourage FM sufferers to become actively engaged in their own recovery, by giving them the opportunity and financial resources to assist them in re-balancing the systems of their bodies.
I would aim to identify individuals, suffering with FM, in need of financial assistance for the cost of treatment and alternate therapies. In the process, we will aim to educate and increase community support and awareness of Fibromyalgia.
This is a harder process than my previously idealistic self visualized  so I am just trying to do my bit (and a bit more, if I can) to increase awareness of FM.”

Q: Everyone at FibroFighterz loves your FibroModem Girl Comic! What was your inspiration for that?

A: “When I started my blog and people started to read what I had to say, I thought that we needed a little cheering up (even if it was laughing at ourselves). I started posting other people’s cartoons but soon ran out of material pertinent to us, so I started to make them myself.”

Q: How did you come up with “The Visible Army”?

A: “It grew organically really. I was making video presentations, which the outside visibleworld weren’t watching. I wanted to get the word ‘Fibromyalgia’ out into that world. I didn’t need them to know what it was (yet) but I wanted them to start asking – this is why I think it is really important for people to use their VISIBLE Army picture as their profile picture. I realize that not everything is about FM but, if we don’t get people asking and looking for answers, no-one will!”

Q: Do you have any advice for Fibromyalgia/Chronic Illness patients?

A: “Read everything (and from the original source, if you can). You need to arm yourself with information to fight this battle! And what works for one person (you guessed it), doesn’t necessarily work for others – so keep experimenting!”

Simone is an incredible woman who chose to take her negative experiences and turn them into something amazingly positive and proactive. We here at FibroFighterz and FighterZine would like to thank her for taking the time to talk with us! Keep up the awesome work Simone!

 

You can find Simone on Facebook, WordPress, Her Fibromyalgia Awareness Store, Youtube, and Twitter!

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