The Martian Princess and The Bear: A Shared Journey Through Chronic Illness

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”

The Sanctuary Of The Modern Day Zoetrope

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”

Living My Life Slowly

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’.

Continue reading “Living My Life Slowly”

Trust Your Gut..?

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.

Continue reading “Trust Your Gut..?”

The Lifesaving Essence Of Being A Fangirl

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”

A Broken Derby Doll

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 Coffee Cup Full Of Paint

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”

A call To Action: Believe In Bethanie

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”

Spinal Manipulation As A Treatment For Fibromyalgia?

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?”