UPDATE, May 6: DESIREE Robinson's efforts to raise awareness about the illness fibromyalgia climax in less than a week with the release of a new video.
The three-minute video Desiree has been working on for some time with a small team of talented individuals and will release on her YouTube channel on May 12.
In the meantime, you can enjoy the song her friend Rayner Muller from Rayner4musiC has composed for the video above.
If you enjoy it, it's available on SoundCloud.
INITIAL REPORT: FIBROMYALGIA is an invisible internal enemy, you wouldn't wish upon anyone.
Sadly this is my reality - along with millions of others worldwide.
My journey started when I was a teenager. Unexplained, nausea, vomiting, and pain would all show up as individual symptoms, which made it hard to diagnose.
I was at a friend's place one day. For months I had suffered from pain all over my body, I was sick all the time with flu like symptoms and the worst chronic fatigue. My friend's sister was there and we got talking.
"Desi, do you feel tired all the time and have pain?" she asked me.
I said yes and she asked if I had been seeing doctors and if they had me any answers.
I said no, and her next words left me briefly confused, but would change my life forever.
She told me I was just like her. She wouldn't explain any further, but said I should go and see her doctor.
Her doctor was on the coast and I lived in Brisbane, so while I thought about her suggestion, I didn't rush out. I was reluctant to make the trip. I had already seen many doctors and specialist over 15 years and been given no answers.
Months went by, my symptoms got worse and eventually I could no longer work, so I did what any normal person would do under the circumstances. I moved back home to family.
Finally, I got up the courage to go see my friend's doctor. I went through test after test, all coming up negative, then the doctor turned to me and said "you have fibromyalgia".
There was no cure, no medications that help without side effects and I would have this for life.
Talk about a shock to the system! I don't remember much after that. I was numb, in disbelief.
After all these years I finally had a diagnosis, but the reality there was no cure, yes it won't kill me but I have to suffer for the rest of my life.
This sent me into a tail spin of depression - a dark place I do not want to visit again. However, it means I understand how so many who suffer from fibromyalgia do, from time to time. The pain and fatigue can be so debilitating we simply can't do daily tasks.
Fibromyalgia syndrome is a central nervous system disorder, something we did not know when I was diagnosed in 2009.
One thing brought me out of my depression completely was photography.
I practiced on my baby son and my family. I loved it so much I decided to teach myself.
From home, I got into studio photography which brought me back to my roots in hairdressing and makeup artistry - I was in the industry for seven years before leaving due to fibromyalgia syndrome.
So, I teamed up with my old hairdressing mate and started doing glamour photography and, to our surprise, our work is so popular we are now working with models and have a new project to raise awareness of fibromyalgia a three-minute video that will be released on May 12 on the Desi Lou Photography YouTube channel.
I went to old and treasured friends Rayner Muller from Rayner4musiC and Susan Sheehan for their help on the video.
Susan is a hair stylist, helping out on the shoots for the video and Rayner is a talented musician who jumped at the chance to cover The Script song, Superheroes, for us for the theme song.
All these fabulous people are donating their time for this cause, to raise awareness for this chronic illness.
Those who have this illness suffer from, widespread musculoskeletal pain, severe fatigue, disturbed sleep, dyscognitation, migraines and other type of headaches, nausea, muscle spasms/tightness and the list goes on.
Awareness and acceptance brings us hope. Some days we feel alone, depressed and want to cry, a gentle hug, text phone call to say you are there for us is all we need.
Realise it's real. Get the knowledge you need to help yourself and loved ones, understand this is an invisible illness and that fibromyalgia isn't a one-size-fits-all illness. It means different pain for different people on different days.
It does not go away. There is no cure yet and it does not discriminate. It affects women most often but it hits men and children too.
We can smile despite the pain because we are human and we have a warrior soul. Don't give up the fight.
Soft hugs, Love and Life to you all
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