“Just Invisible” – Medical Access Issues For Homebound/Bedridden Persons

If you are housebound/bedbound due to chronic illness, you will be well aware of the limitations placed on yourself and others like you in accessing adequate healthcare. However, it is an issue that largely goes unnoticed, as the medical system and broader society either do not want to know or choose not to care about people in this situation.

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That time I went to Geelong

Recently, I did something which I thought impossible. I went away for four nights, for the first time since becoming chronically ill 8 years ago. It was to the closest city: Geelong, 2 hours away, with my mother/carer/also chronically ill buddy. You might be wondering, how the fuck did you do that, Siobhan? I’m as shocked as anyone else! One night I just felt, for the first time well, ever, that I could do it. And by that I mean, do something, get sick, but not get permanently worse (which has been the norm these past 8 years).

An airplane flies over tropical plants.
It might not have been international travel, but it may as well have for the toll it took on my body.

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“Better dead than disabled”: on Stephen Hawking, Me Before You, and “mercy killings”

Content warning: suicide, murder

Is it better to be dead than disabled? It might seem a shocking question, but the idea that death is better than disability is one that is promoted all around us, from fictional stories to news reports. It’s certainly a question that journalists grappled with when (clearly) struggling to write about Stephen Hawking’s recent death, in media coverage that can best be described as an “ableist garbage fire.”

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Health update – neurologist report

It feels strange to post an update when there’s really nothing to update, but here I go! Some time last year I consulted a neurologist to determine if there was any known underlying neurological cause for my worsening symptoms. I’m sure those of you reading with chronic illnesses will understand that seeing a new specialist is not something you take lightly – the entire process consumes so many spoons that sometimes you have to trade off whether it will leave you better or worse off, health-wise.

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Electrolyte drink review updates, and some thoughts on Banana Bag

Just letting you know I’ve updated my Electrolyte Drinks Mega-Review post with a couple more reviews. The first is for Repalyte, a flavour-free rehydration sachet which Ruth kindly sent me. It’s a handy alternative for those who cannot tolerate flavours or extra ingredients. The other is Aqualyte, an Australian-made product which proved a sugary disappointment. Check out my mega-review post for more! Continue reading “Electrolyte drink review updates, and some thoughts on Banana Bag”

How I spent my birthday

Warning: contains GIFs.

This isn’t the most fun birthday story, nor the happiest, but I believe it’s important to be honest about my symptoms to promote understanding of life with chronic illness. It doesn’t take a break when it’s your birthday! (Though I wish it did.) And if it helps others who share the same experiences, even better.

 

It’s lunchtime, and mum and I are preparing toasties. Suddenly, a wave of exhaustion washes over me, and I head back to my room for a quick rest before the exertion of sitting upright at the kitchen table. I’m nearly at my chair when – THUD. I hit the floor.

Hans Moleman: down I go.
I’m pretty sure this is the most-used GIF on this blog, but it’s just so damn accurate.

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