Connecting while disconnected

The shadows float past me, through me, beside me; They look for me, speak to me, try to connect with me; I’m afraid if I touch them they’ll turn back to air. I know them, I want them, but there’s no way to get to them; The fog that surrounds me demands I stay here….

Tired

‘I’m tired’ I say, moulding my face into a smile. I give the answer that’s easy to hear; The one they can understand. What I really mean is I’m empty,  I have nothing left to give. There’s an elephant sitting upon my chest, Making me pant and heave like I’m drowning in air.  My muscles…

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….

Hyperbaric Oxygen Therapy

I’m sitting in a small room, much like a small submarine. There is a comfy office-style chair waiting for me and a slightly daunting set of tubes dangling from the wall like a large plastic octopus. I’m shown in by a kind lady who tries to answer my questions and reassure me that it won’t…

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…

Muscle memory

Understanding how muscle memory works can be a vital part of recovery after a period of ill-health. There are two similar, but slightly different types of muscle memory, both of which can be really useful in recovering from periods of illness and deconditioning. The first refers to the ability of muscles to build quicker when…

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…