If you're a spoonie, you've been there.
You've forgotten the last time you washed your hair. You've started sniff testing your laundry for clothes like a teenager, and your linen hasn't been changed in weeks.
You're missing meals because you're physically too exhausted to cook, and you're so flat broke that McDonald's is as out of reach as caviar.
You need to look and smell decent for your visit to your specialist, but you ran out of clean clothes two days ago, and your feet are too screwed up to stand.
You're randomly flipping out, ready to end it, and basically fed the hell up.
But that's pretty much most days, and you're not the kind to go down without a fight.
So how do we do this thing?
Well, for me it began with letting go of trying to look OK when it really doesn't matter. If being disabled makes my friends think I'm lazy, dirty, selfish, stupid, ignorant, infantile or insane...they need to move along.
Step two was throwing out the rule book. Wash your Laundry in bed. Eat takeaways if that is the only way you'll eat today. Ignore the chaos productively. Redefine the timeline. Take a steely grip of your schedule and learn to say no when that's the right thing to do by your loved ones - even if that means letting them down.
Stop apologising for being disabled and dropping balls. Start demanding accommodations. Ignore the ill educated masses who judge, harrass, advise, admonish, shame, blame and bully you.
Listen to yourself and only yourself for at least six months to really know what your body and mind is telling you before you ask advice.
And repeatedly say to yourself : " I am a badass, but even Batman has Robin. "
Love
Whizper
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