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Fundraising to pay for biomedical research towards test, cause and cure for fibromyalgia

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Behind The Mask Masquerade Charity Event - Saturday 4th April 2015


Here Margaret talks about organising the Behind The Mask ball and Fibromyalgia

The 4th April 2015, Living Behind The Mask or Behind the Mask Masquerade Charity event was a success much to my own amusement. The support was overwhelming and many lessons were learned since it was my first time.


Why Living Behind The Mask? when one has an invisible illness or illnesses no one can tell how they are feeling inside or outside, therefore it feels like wearing a Mask no one can tell how you are feeling . In any given room it's impossible to pick anyone with Fibromyalgia or any other  invisible conditions unless we raise our hands and come forward.  #LetsRaiseOurHands and come forward. 


My Name is Margaret Probin, I was diagnosed with Fibromyalgia in 2013 after waking up in 2012 not being able to walk, seemingly paralysed. The pain was unimaginable, it felt as though I was dying a thousand death. It then progressed to a point were I could not talk, walk or do anything for myself but requiring care 24/7, everyday all the time, I couldn't feed myself nor could I bath myself.


 I would like to say I am one of the lucky ones to have any early diagnoses of fibromyalgia with other conditions as well as ME/CFS, Chronic Back Ache, Dysesthesia etc. All the above drove to me start thinking about doing a fundraising event in Aid of Fibromyalgia after I was told the heartbreaking news there was no cure. 


In June of 2014 I had read a lot of stories of people who suffer from this Chronic pain condition and my passion grew to raise funds in aid of fibromyalgia. When one has a condition with no cure it's the most difficult aspect to accept in any given situation. Fibromyalgia destroys lives, families, marriages among many other things but to mention a few. 


I can write a book on issues, I have gone through since 2012 but today, I just wanted to say thank you to Jamie for reaching out to me after she read my story and saw my plight. I have spend almost 2 weeks thinking about the right words to say to her. Jamie's support has been amazing to say the least. 


One of the most Compelling Facts about living with an invisible illness is our most powerful stories and how society sees a person. I have made personal connections with people I have never met before in my life and strengthened my relationships with many dear friends/family. But I have also ,lost a lot of friends whom I thought were my dear friends. 


Sometimes people don't realise the little they do for people might seem a small gesture but when Jamie reached out to me, she increased the levels of my undefeated spirit. In all fairness my words of thanking her are limited but Thank you once again Jamie 


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