Balancing spoons

I first read Christine Miserandino’s ‘spoon theory’ about two years ago, when I was trying to understand my own condition and the limitations it brought. As with many people with chronic illness, I identified with it immediately and have since thought in terms of ‘spoons’ frequently. In essence, the theory describes how the capacity to…

Fire

I can feel the fire rising.  The fist awakes and begins its journey, Reaching up through my body, Searching for the centre of my being.  It grasps my heart,  Squeezing Confining Relentless. The tendrils stretch out experimentally, Looking for an easy way through.  Where will it burn today?  My fingertips blaze like torches. The fire…

She’s so pretty

A comment that shouldn’t offend, that made me want to simultaneously cry and hit the woman in the face: ‘She’s so pretty!’. I had been shopping with my mum, buying things for my kids and something for tea. I wheeled myself to the till, put my things on the belt, then paid using the card…

Magic chair

I have a magic chair. It makes me invisible, So that people look over me to those walking behind. My chair can take years away, Tricking people into thinking I’m just a child, Unable to think for myself. This chair can be a window, Asking those around to look inside, To make comments, ask questions, stare….

Arts therapy

I find writing really cathartic. Sometimes I write about things that are bothering me, but it isn’t all about being able to pinpoint a problem or emotion and let it out. Sometimes just the act of expressing something can really relieve built up emotions even if the exact source of the emotion remains a mystery. That’s…

I got this!

I try to think of the positives my disability brings as well as the negatives. There are some. Honest. Today I heard my youngest little one muttering to herself as she climbed up a particularly difficult part of the playground. She was holding onto a rope, whilst climbing up a steep slope, using half-logs to…

The curl

Golden curls twist around my fingers Slipping through the gaps. Light touches them softly. Gravity tries to pull them down but up bounce the curls regardless. She turns to face me, Framed by golden light, Glowing, loving, trusting. I pin the image down, tracing every detail, Locking it safely away. These curls have magic in…

Teenagers and disabled parents

Teenagers are an alien species at the best of times but when managing chronic illness alongside guiding these strange creatures towards adulthood things can get much more complicated. My eldest is about to turn 15. She’s beautiful, intelligent, stubborn and egotistical. She knows everything and is perfectly content in the knowledge that she is absolutely…

Wading strong

One by one bricks come crashing down, Smashing to a thousand pieces. The rubble climbs higher, Grasping at my knees, Pulling me down into the dusty depths.  My strength falters but does not fail.  I wade on through the chaos, Leaving trails behind me, Protecting those who follow.  I show them the way,  Careful and…

Mindfulness: the holy raisin

Picture the scene: 15 adults with varying conditions and emotional difficulties sitting in a circle, intently staring at our designated raisin as we were guided through a meditation intended to bring us into a state of mindfulness. We had examined its shape and texture, considered its aroma and contemplated with anticipation how it may taste….

Thunderstorms and choices

Thunderstorms come into our lives and turn them upside down. Everyone gets them; relationship breakdowns, injuries, illness, losing a job, money worries, the list is endless. There isn’t much you can do when they decide to hit, especially if comes in the form of disability or illness. Even if you have done something to cause…

Staring into darkness

My toes dangle over the edge. I’m staring into the darkness, Gravity pushing me towards the inevitable Black hole.  Spiraling down into oblivion.  I can step back; I know there’s ground behind me.  But can I lift the weight of my world to reach it?  Darkness is peaceful.  Oblivious.  Numb.  Frightening.  I’ve been here before…