It’s been a while since I did a personal health update, largely because I just don’t like thinking about it any more. I was reminded of this fact when I had an appointment with a social worker yesterday. She is an advocate who I employed to assist me with my NDIS application (though she has nothing to do with NDIS herself, nor does her agency in any way, and therefore has no say in their assessment of me).
I suspected it would happen, right from the beginning when I planned my trip to Geelong. It would be a complete disaster or a wild success, but I figured I was in a downward spiral anyway so I may as well go out with a bang. And that I did.
It’s been a shit few weeks. Months, really. My health has been irreversibly fucked up by my ill-fated trip to Geelong, yet I’ve still had to deal with every crisis life wants to throw at me. Continue reading “Trauma is the blurst (and so is the NDIS)”
Or at least, that’s what I tell myself when I’m dealing with government agencies. “It’s their job to put you off.” “They make it so difficult you’ll give up – don’t let them.” “The systems are designed to exclude you, you have to fight for your rights.” But sometimes, it’s just all too hard.
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).
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.
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.