Friday, September 23, 2016

my home my home my home.

I feel like I'm suffocating. Me, and the people around me. My family. My friends. Who, for the most part, have disappeared. A few remain. The hard core few. They can see I'm still here.

Living with a slow burning destroyer is hard. So hard. I forget myself. Forget who I was. I think that I must be mistaken, if my former self makes itself known. I am unrecognisable to myself. 
I was the girl who went to the gym, who went to yoga and pilates, who grew to love running on the treadmill, she's gone. As is the girl that drove, delivered babies, made silver jewellery, swam and walked. Of all the elements of me, it's walking I miss most of all. Walking meant I could stand. Standing means I can shower on my own. Standing is the starting point of walking. Walking meant so very much to me. It opens up the world. Walking is a springboard. 
I don't know how to feel ok with being like this. With being less. It makes me want to scream out cry until my chest hurts. To rage. To rage. TO RAGE.
But I don't. I keep it all in. Where it festers. And becomes poison. And like acid, it erodes. Until all that's left is a shadow. A shadow of my former self. 

So that was yesterday. Fast forward to midnight and my eyes are still burning. I feel so small and so insignificant. And like people are lining up ready to shove me in a corner. Well I am ready to scratch your bleeding eyes out if you try. I am worth more than that, so take your fucking ugly devices and shove them. They are not designed to make my life better. They are designed to make your life better. In fact, I'd go as far to say that the design thought was missing. They have no place in my HOME. So you can tell yourself that you've done what you can, with the shit that you have, palmed off on some poor spastic, to make your life easier, to make your guilt lighter. I say your, but I mean occupational health. Their occupation was not concerned with my mental health. I felt like I was physically shrinking. 
Yes, I'm unhappy. Yes, I hate myself. I want to turn myself inside out, and rub myself raw. I want to rid myself of this life stealing, slow burning disease. But it's part of who I am, and like my shadow, it will always be here. 


  1. You will never, ever be "less". You're not the same (although your spirit is. In fact, it's "more") but you are not less. Not to the people who love you anyway and I'm counting myself firmly in there. Of course, it's all easy for me to say, I don't understand how it is to be you and you're the expert here! But I see the exact same person I always saw at school or in the street. I see a woman who is even more to be admired. In fact if you go to the actual meaning of the word, rather than the current non-meaning, I see a celebrity ie one who is to be celebrated. I celebrate your beauty, your wit, your intelligence, your achievements, your history, your insistence on overcoming very difficult and hurtful circumstances, your compassion, the amazing family you have created and nurtured, your love for your friends from which I continue to benefit, your nerve, your wicked sense of humour, your understanding and kindness, the gang you, Jo and I have formed (we need a name!)! In short, I admire you for the woman you are and always will be. You're amazing, unique and I love you. So there.

  2. Well that was a poke in the eye with a sharp stick! Thank you......and love you too. Xx