Warning: contains experiences of gaslighting and abuse. There is a GIF near the end.
Recently, I had an altercation with a family member on Facebook. They published a meme which is all too common on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.”
As someone who suffers from a disease which dictates aversion to movement, sound and people, you would think that being around children would be intolerable. And generally, you’d be right. But my friend Beth’s munchkins are the exception. I adore them. I love being around them, even when they are running through the house, squealing with excitement. I think their reading and writing skills makes them mini-geniuses. My walls are covered with their artwork, and I love nothing more than having them snuggle up on my lap, even when they are emitting endless streams of wet farts.
Today I’m sharing with you another piece I had published on The Mighty. Firstly, if you are a spoonie, or know someone who is, check that website out! It has contributions from people with all different abilities and illnesses speaking from the heart about their experiences. You’ll get lost in a rabbit warren of amazing stories, believe me.
After this piece was published, I received many comments complimenting me on my ability to make the best out of my illness. I’m not sure that was my intent when writing. Sometimes you have to laugh at the ridiculous situations your illness places you in (strolling naked along a hospital corridor after being showered by nurses? Anyone?), and I have grown as a person since becoming sick. However, this doesn’t mean I have to be grateful for my illness, or enjoy it.
For much of my sewing life, I was obsessed with dresses – making them, wearing them, stalking beautiful ones online. Now my health has come to the point where it is hard to maintain a prolonged project, or wear anything more fancy than ponte pants and a long shirt.* Enter Grainline’s Hemlock Tee, a free pattern download from the creative minds at Grainline Studio.
I’m sure this pattern has been done to death already, but I love my three makes and wear them all the time. It is quite rare that I remake any pattern, preferring the challenge and novelty of the new, so it is a testament to the Grainline Tee that so many versions are nested in my wardrobe.
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Above: my island home
Hello! And welcome. I’m Siobhan, a 20-something living in country Victoria, and I’ll be blogging about life with severe CFS/ME, with some fun crafty creations thrown in along the way. Having CFS/ME turned my life upside down, and yet severe cases are underrepresented in the media and popular discourse. I want to change that.
Without further ado, here is an unedited version of a piece which was recently published on The Mighty, about life with severe ME/CFS. Enjoy, and feel free to drop in anytime!