Tag: Disability

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Not Going Out?

The last time we made official plans for New Year’s Eve was in 2012. My significant other and I had been celebrating locally for a while, but as a non-drinker, I felt a tad awkward continually turning down offers of champagne from strangers. So that year I decided we would do something different- something that both of us could enjoy, even if it meant that the journey home would be a bit of a mission.  I checked the menu, booked our tickets and started to work on the pattern for my new frock.

 
Then I took some poor medical advice…

Continue reading “Not Going Out?”

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3 Tips On How To Treat Your Chronically Ill Guest At Christmas

I’m going to try really hard not to make this a rant but, be warned, for reasons I am bizarrely unsure of, I am in full Grinch mode this Christmas. It’s either due to the medical treatment I’m currently undergoing, or an unexpected lack of Ice Hockey… Continue reading “3 Tips On How To Treat Your Chronically Ill Guest At Christmas”

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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”

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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”

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A Mile In Our Shoes

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”

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Bread, Barley and Blood

I’m not writing this for your sympathy: I have no need, or desire, to receive a plethora of ‘get well soon’ messages (not to be ungrateful – it’s just a little beside the point…)  I’m writing this for the people who, like myself, cannot use the word ‘allergy’, but know all too well that certain substances are detrimental to their health. I’m also writing this for the people that goad them.  The people that claim that an absence of an EpiPen is a sign that we are merely fussy eaters: that the substances we put into our bodies have zero effect on the illnesses we suffer from.  The ones who believe that if a reaction isn’t immediate and deadly that the ‘sensitivity’ is fake.  This horror show is for you.

WARNING: GRAPHIC DESCRIPTIONS OF THE MENSTRUAL CYCLE ARE CONTAINED IN THIS POST. Continue reading “Bread, Barley and Blood”

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3 People The Chronically Sick Always Meet

We’ve all met them. Those allies who, either deliberately or unconsciously, make you feel so much worse about yourself, about the way you choose to live, and how you deal with your own challenges. These are the people who, when you’re at your most vulnerable, make you feel selfish, ill-informed, and downright idiotic: and their attempts to ‘help’ you are about as beneficial as rubbing sand into your eyes.  Continue reading “3 People The Chronically Sick Always Meet”

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A Fight Against Illness, Or A Battle For Wellness?

There is often a vast amount of war-related language utilised when we, generally, speak about illness – chronic or otherwise. We fight for cures, battle our symptoms and add the word ‘warrior’ as a form of a suffix to the nouns that describe that which ails us. So far, so understandable – living a life like Sisyphus is not easy. Sisyphus, however, had no choice. To refuse to push that boulder up the hill would have incurred the wrath of the Gods.  You may be thinking that illness isn’t a choice either – that is correct – but how we respond and deal with said illnesses, is. We can look at that giant rock and say “no, not today”.  So why is it that even in support communities that treating ourselves with the kindness we deserve often considered to be a sign of surrendering to disease? Continue reading “A Fight Against Illness, Or A Battle For Wellness?”