I’ve been living with fibromyalgia for almost 13 years now. In a way, I was lucky – I only had it for 3 years before being diagnosed. The short time frame was because I couldn’t understand why everyone else was coping with life better than me, so pushed myself to the point where I completely collapsed. Getting a diagnosis was still hard, and I had my fair share of doctors telling me it was all in my head, and of myself wondering why the hell I couldn’t just get over this & go back to my life.
By the time I was diagnosed – after being misdiagnosed & getting worse – I was so, so relieved to finally have an answer. I had no idea what was in store though… I thought I could beat it, that now I had all the pieces of the puzzle all I had to do was work hard and I’d be able to do anything I wanted.
A fair few years – and several relapses – later, im trying to learn to live with this condition. I still push my limits, I still dream outside of what I will be able to achieve, but I see this as a blessing, and the reason I’m not still in bed.
I now spending time taking photos of all the things I used to love to do – actors, dancers, circus performers – as well as fashion & whatever else will stand still long enough for me to shoot. I do it for the love of it, and it drives me enough to get me through the unpleasant things I have to do to make me able to do it.
I’ve wanted to run an NZ based awareness event for years. I’ve been treated here & overseas (America) and most of the progress I’ve made outside of that has been due to the online research I’ve done. There’s no real fibro network in NZ, and few options for people experiencing chronic pain to meet, talk and actually express what it’s like to be them without being met by confusion or sometimes hostility. Support groups can also lead to comparing symptoms and never actually moving forward.
I want to use this event to raise awareness of the fact that invisible conditions are no less real, or life altering; and to provide an opportunity for people to talk about a subject most shy from. People are uncomfortable around pain, they don’t want to experience it and they can’t comprehend what it would be like to have it as a bedfellow.
Pain is a fact of my life. It can be unpleasant (excuse my English understatement) but I can’t remember life without it – it’s become part of the normality of my life; & it’s a daily balancing act keeping on top of it.
It’s not entirely unpleasant. I’ve learned things and experienced things I never would have if I had not had this condition. It’s a cliché, but it really makes you appreciate the small things.
Please check my photography out at the below links: