Don’t expect this to be one of those “plan ahead for your international long-haul flight, try not to see too many amazing attractions in one day” kind of posts. This post is for those spoonies who can barely make it 1 hour out of the house, let alone travelling to another town; for whom a few hundred km’s may as well be around the world. (Toni Bernhard has an excellent article about how minor holidays become massive trips with chronic illness on Psychology Today.)
These are my tips for surviving a short yet major (for me) trip to Geelong (2 hours away), which would have been a destination for a fun day out before I fell ill. If you’ve been reading my blog recently, you’d know I didn’t cope that well and am paying for it dearly now, but if I hadn’t planned ahead and made accomodations, I wouldn’t have made it through the week at all.
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.
May is ME Awareness Month (along with literally every other illness, it seems). I’m too despondent to write something new, so I figured I’d recap my top 6 posts regarding ME/CFS and chronic illness in general.
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).
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.”
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.
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!