The Martian Princess Chronicles
A Martian Princess living with the hidden disabilities caused by residing on planet Earth
When I first met The Bear, I was a party-girl; drinking, smoking and dancing into the wee hours. Spontaneous and unpredictable, perhaps even slightly unhinged – but not enough to fall into the cliche of a terrifying histrionic.
We were from different cultures but shared similar, mildly chaotic upbringings. Continue reading “The Martian Princess and The Bear: A Shared Journey Through Chronic Illness”
It can be difficult, nigh on impossible even, for the chronically ill to find a real sense of peace. On a daily basis, our bodies refuse to obey the most basic rules of human existence, while our appearances give no outward indication of why our lives can be so difficult. We often exist in-between worlds: too able-bodied to be considered truly disabled, yet far too ill to participate in life the way we’re ‘supposed’ to. Finding a place to escape the heavily polarised ‘pull’ of opinions that people are often all too willing to share could be considered to be an essential part of self-care. Even with the various activities and hobbies that I love, the one thing whose absence sincerely affects my psychological wellbeing is going to the cinema. Without these periodic excursions into ‘otherness’, the emotional cracks start to become chasms – it is the sanctuary of the cinema that prevents me from falling in. Continue reading “The Sanctuary Of The Modern Day Zoetrope”
I felt my energy ebbing away and knew that I was destined to experience yet another unproductive day. I’d had so many of those recently; and despite the fact that most people understand that the very substance of the term chronic means I will never fully recover, I still get asked if and when I will be ‘better’.
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”
If we were having coffee I’d tell you that this has been, hands down, the most surreal week of my life. For those of you who may not know, I’m a Brit: London born and raised. So it would be slightly disingenuous for me to pretend that the seismic shift in the UK’s global position didn’t occur and that it has had zero effect on me. But this post isn’t actually about politics: it’s about art. Art as therapy. Art as a coping mechanism. Continue reading “A Coffee Cup Full Of Paint”
When I started this blog, it was my aim to keep it as apolitical as possible: a decision that has has been quite difficult to maintain with all of the disability rights issues that are at the forefront of a lot of some very harsh government policies, in the UK.
But, just for today, I’m changing my mind.
Those of you who read my blog regularly will know that I have a HUGE issue with physical illnesses being treated as though they are purely psychological. This tends to occur when organisations are tardy in catching up on the latest research or are dealing with a rare disorder for which they need more ‘proof’ of existence. In addition, in the UK every treatment has to be evidenced based; which is great for the most obvious illness like certain cancers, but not so great for complex conditions that create ‘cascade failures’ across multiple systems. So, even if 20,000 patients are making the same statement until there is some kind of empirical evidence, those statements will always be treated as anecdotal. I want to show you why this can be terribly problematic. Continue reading “A call To Action: Believe In Bethanie”
In an ideal world, my wonderful Osteopath would be my primary carer. All of my Doctor’s notes would be filtered through him and he would tell them the best course of action to keep me as healthy as possible. He was the only one who believed my symptoms when everybody else was ushering me out of their offices. He was the only one who kept my right shoulder mobile (and diagnosed the problem correctly) when others tried to tell me that the pain was a result of a mood disorder. And he truly is the sole person responsible for keeping me out of a wheelchair. But what I didn’t realise until recently was that Osteopathy could be the key to keeping many of the Fibromyalgia symptoms in check. Continue reading “Spinal Manipulation As A Treatment For Fibromyalgia?”
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”
The Martian Princess Chronicles 