Fibromyalgia is a bit of a ‘catch all’ diagnosis. It’s often handed down when doctors don’t know (or do not have the incentive to discover) what’s causing the myriad symptoms that the patient is suffering with – and those symptoms are myriad; over 200 at the last count. Because of this complexity, finding the root cause or best treatment for each individual can be akin to searching for the proverbial needle in a haystack. Add to the mix the fact that Fibromyalgia loves company, and rarely travels without a companion illness, and it becomes clear that medicinal platitudes are rarely going to be helpful; it’s the person that has to be treated, not the illness. This is why some of the best allies are the ones who listen.
At first glance, and especially for people who read my blog regularly, this post will seem like a piece of unabashed promotion from a (slightly besotted) fangirl; and that’s fine – I’m not ashamed of this obsession, even if others believe I should be. But what is truly the driving force behind this post is an unexpected, and almost other-worldly, synchronicity that is literally guiding me through the unpleasantly complex maze of chronic illness. Continue reading “The Lifesaving Essence Of Being A Fangirl”
I am completely unashamed to say that I, like so many others, discovered the brutal and brilliant sport of Roller Derby through the Drew Barrymore movie ‘Whip It’. Even though it is a really technical sport with enough rules to make even the most ardent bureaucrat flinch, it still seemed to be the type of team sport that would suit the way my brain worked: gameplay travels in one direction and the very clearly marked boundaries make it quite difficult to find yourself accidentally offside. There was, however, one small problem – my health was languishing at the bottom of a metaphorical toilet bowl. Continue reading “A Broken Derby Doll”
A couple of weeks ago I wrote this post, detailing the trouble I was having with the only mode of treatment I was being offered (there will be a post next week about re-discovering a privately funded treatment that had been right under my nose, and why I was right to be suspicious of the program); the psychologist that I was dealing with kept trying to draw me back into the schedule that I had explicitly told him I wanted to be extricated from. As I had explained the link between Ice Hockey and an alleviation of my symptoms at an earlier meeting, he kept trying to use ‘sports based language’ as a psychological ‘trick’ to get me to relax into his way of thinking. What he didn’t know, however, is that my sister is a psychology major, so I’ve learned a lot about human behaviour and manipulation over the years. A non-sports fan, and more importantly, a non-Hockey fan trying to ‘match and mirror’ what he thought my language would be just made me even angrier – it was a blatant attempt at control, and further proof that I could not place my trust in him. This is the email I replied with. Continue reading ““First, Do No Harm…””
Desperation led me to make a very poor decision about my own treatment. Continue reading “Look Before You Leap”
Like a lot of people whose disabilities are invisible, casual ableism is not something that sits permanently on my radar: I generally don’t have to think about wheelchair ramps or the absence of verbal prompts on a city bus. What I do have to concerns myself with is someone shaving parmesan onto my gluten free penne at a restaurant (this actually happened) because they don’t realise that what they may see as a dietary choice is really something that is keeping me out of the hospital. So when I first read a rather odd hit piece in a national newspaper last year, rubbishing a device that has huge potential for personalised health care, I didn’t understand at the time that the anger I was feeling towards the author was because she was clearly dismissing the experiences of so many of us whose bodies don’t run ‘like clockwork’. Continue reading “A Mile In Our Shoes”
In my previous post, I wrote about how an irrational fear had caused me to accidentally sacrifice something that eventually turned out to be incredibly pleasurable. The issue I’m dealing with now is what to do when the danger is real and the apprehension is logical. Continue reading “Remembering The True Purpose Of Fear”