At five am-ish stiffness woke me. Each move to manoeuver out of bed was laboured and painful. In the loo I sort of dropped hard onto the seat; my joints lack flexibility. Most times I raise by putting my hands flat on the wall and pushing upward. Sometimes I shout for help, hoping my frustration infiltrates my sleeping carers.
From the top stair the ground looked a long way down, like when I absailed a near 90 degree incline. I travelled downward in my chair lift wishing a turbo boost would propel me into a parallel universe where my body worked. I made a cuppa noting my stiffness and pain easing and a sense of calm tucked around me.
Back up the stairs I went to wake Kitty. She’s hard to distinguish; her top half engulfed by the quilt whilst her legs are entwined in it. A bittersweet pang of love and protection rushes me. She returns to uni today and already I feel a little less. It feels unnatural for me to be parted from my children. While I want them to storm Ben Nevis, backflip onto the Oscar’s stage to claim an award, turn alligators vegan, I want them to stay close…safe.
Breakfast. Long gone are the days of a full English at Moons. Everything I eat has unshiftable calories and the monster Pregabalin increases my appetite. Carrying an extra stone and a half on my frail spine, I procranstinate daily what foods will satisfy but not fatten. My diet is mainly vegan and as it’s #Veganuary Kitty and I shared a tin of spaghetti hoops on toast. She has that glow about her, the shininess emanating from your heart when you’re in love. She’s spending the weekend with her boyfriend and I don’t begrudge her a minute of it, I miss her but that’s how it should be. Gerty too is floating around, shiny.
Every so often I have a bad day. Bad in the sense that I feel beat. It’s never one thing that causes it more a recipe of woes. Usually I’m so Doris Day I’m annoying. I genuinely do find enjoyment in simple things like perusing M&S’s food shelves. I’ve planned a visit for Sunday to pick up a Planet Kitchen meal from their new Vegan range. Do you see? Planning to go to a shop is an event for me. As is going for coffee. Today I couldn’t be arsed, as my kids say. Getting showered and dressed is energy draining; I don’t apologise for answering the door in my pyjamas. The shortest journey to the high street spikes pain. My neck bobbing up and down from our little car’s poor suspension; toing and froing with accelerating and braking. Even with a neck brace leaving the house is an activity I seriously deliberate. Disability IS NOT just being in a wheelchair, blind, paralysed, being an amputee, it can be a collection of small issues that compounded make you housebound, scared to go out, an empty shell with no energy.
I resent how my condition controls me. How it’s always the deciding factor. How it determined I couldn’t join my daughters in Golders Green for a vegan lunch because I physically can’t get there without consequences. How I missed out seeing #Years&Years at the #O2.
Before Christmas I had a total crisis. If you’ve never had mental health issues this dark, barren vacuum of negativity that sucks you in and strips you of everything good, is hard to imagine. It had blasts from the past; issues I’ve not dealt with. Since forever I’ve strived to be emotionally strong; I’ve never wallowed in self pity…I should have…it’s normal to feel sorry for yourself, to cry, to scream, to fuck off everyone around you. Not me. I’ve smiled through every bad thing that’s ever happened to me; even when I knew that adage ‘things can only get better’ was a lie. I don’t blame anyone for who I am. I’m 99% amazing, but that undermining, damaging 1% clings to me like a tapeworm in my stomach. When my condition forced me to give up swalking that 1% swelled up inside me and I just didn’t know how to quelle it. Other than writing, swalking was my happy place. My physical freedom, the mobility I had in the water, the smell of chlorine, the familiar faces, the daily power showers, my banana…I’m slowly losing everything.
So if I send you a ridiculous amount of links about my book, or my blog, or I Twitter excessively, or I Instagram a tin of chickpeas please don’t judge. I’m literally on house arrest, my only crime stealing a roll of flowery wallpaper when I needed one more strip to finish a wall and the price was exorbitant.
I still dream. That somewhere inside me is a best seller. That I can escape the walls of my lovely home by writing. That everyday, after the stiffness and pain; after I’ve swallowed my pick & mix opiates, I step into a world where I’m running for my life, scrambling agily over a six foot fence, kicking the shit out of some messed up pyscho abducting girls.
I want to write for the rest of my life.
One thought on “Invisible Disability”
Keep on writing! If you love it and it’s helping you, keep at it. I truly appreciate your honesty in sharing what you’re going through and still finding some humor in your day. You got this!
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