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Fierce And Fearless Females (And Fellas) Fight Fibromyalgia

20/09/2017 15:18
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Lady Gaga has never been backwards in coming forwards when it comes to treating her personal life with absolute candour. Over the years she has been in the public eye, she has been forthright about her struggles with eating disorders, mounted a crusade against bullying and given every fragment of her being in support of the LGBTQ community.

I class myself as a fan, and throw my hat in the ring in support of all of these causes. But it was her latest announcement that hit me perhaps the hardest. In the best possible way. The announcement was that she suffers from the condition known as fibromyalgia. And it hit me hard because I was officially diagnosed with the condition last year.

My diagnosis followed ten years of searching for an answer to my persistent fatigue, overall body pains, lack of concentration, sleep problems and digestive complaints. I was as delighted as I could be to have a diagnosis because it had been a very long and difficult road getting to that point.

My own journey started in 2005 when I was beset by a tiredness that was beyond anything I had ever experienced. At the time, I was working in a busy, and rather high profile sector of the civil service, dealing with cases and situations that demanded full and protracted concentration and energy. I went to the doctor because the tiredness was overwhelming me, but both the doctor and myself put it down to the amount of energy I was committing to the role. I was given a sick note for two weeks.

But I didn't get any better. By the close of those two weeks, the most effort I could expend was putting a dvd on. Often, it was too much to follow the story, and I contented myself with watching the images moving on the screen. I couldn't cook and I couldn't read, and I certainly couldn't face going back to work. I was written off in total on that occasion for five weeks.

The doctor, of course concerned, took blood tests. They came back clear, and I was stamped with the diagnosis of M.E.

And M.E it stayed for eleven years. I had various episodes over that period of time that return to me in too vivid detail as I remember them now. The worst being when I was meant to be celebrating New Year at the Randolph Hotel in Oxford - all expenses paid jollity that was meant to be the highlight of the Christmas break - and I lay on the floor crying my eyes out because my body hurt, it hurt to speak and I just wanted to be left alone.

Years later and towards present day, I came to question the diagnosis of M.E when, in the course of researching the condition on Google, fibromyalgia was brought up as a related condition. I read the symptoms and something in me clicked 'that's what it is.' I booked an appointment with my G.P, and asked her, quite without embarrassment, to 'poke my points'. As there is no blood test for fibromyalgia, it is diagnosed (once everything else has been ruled out) by confirming that a certain number of points on your body are sensitive to touch. All of mine were. And fibromyalgia it was.

Some may fear the 'chronic illness' label - for that is what fibromyalgia is, they can't cure it - but to me it was a blessed relief. It actually wasn't all in my imagination. I was fortunate to have an understanding and fully proactive G.P. I've read many awful stories where fellow sufferers are misdiagnosed or simply not believed.

Doctors may not be able to cure the condition, but by working with a fully understanding health practitioner and having a support network including family, partner and/or friends, you can find ways to manage the condition through moderating activity, diet, alternative therapies and medication.

One of the most frustrating things that I'm sure Lady Gaga has encountered is being a high-achieving woman, with goals to meet and worlds to conquer, and having to manage a draining and life-altering condition at the same time. I know it's frustrating because I'm in the same boat. I founded After Nyne Magazine two years ago and this year became a director in a new conglomerate comprising the magazine, a communications agency and a soon-to-be-open gallery. Professionally I am exactly where I always wanted to be.

But fibromyalgia is always there. Managing my workload when I'm having a bad day becomes a case of planning in advance, and limiting where I expend energy. It helps to have understanding colleagues who know when you're having an 'off' day and who are happy to carry a little of the load off your back until you regain your balance. People with chronic illnesses fondly refer to ourselves as 'spoonies' - the nickname coming from the belief that we are given a certain number of metaphoric spoons at the beginning of the day, and we have to allocate activities a certain number of spoons. Once we're out of spoons, we have no more energy to give. It's funny, but it's also a great way to remember to take care of yourself.

I'm grateful to Lady Gaga for having the bravery to take a step towards raising public awareness of a condition I mostly regard as a big pain in the arse. Her doing so has given me the confidence to speak openly about it for the first time, shattering my own taboo that to be seen as being vulnerable in this way is a sign of weakness. Lady Gaga, my fellow spoonies and I will tell you that we are indeed the strongest people of all. We survive, and with support and a big helping of self-kindness, we thrive.

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