I have Fibromyalgia and this week it has been kicking my tail more than it has done since I started my vegan diet. It brought to mind a story I had written about the time just after my diagnosis.
One of Mayhem's biggest champions was a wonderful author and reviewer who had Fibromyalgia. She was determined that the story wouldn't settle for any old publisher ;) Sadly, she died in 2013.
**********TRIGGER WARNINGS (CONTAINS SPOILER) *************
This story is bloody miserable and it is about euthanasia
Fibromyalgia was the White Witch who waved her wand and turned lives to constant winter. Aslan could come and make it spring again but there was no telling when or if that would ever happen.
The Wallace and Grommit alarm clock on the bedside table told her it was one. Afternoon probably. It was awful dark for day though. It could be one in the morning. Apparently, the date was 09 06 98. An anniversary of sorts. Her life had ended three years ago, exactly, or maybe exactly but twelve hours ago.
Snow fell, thickly, outside her bedroom window. She watched it and felt nothing. Feelings required energy from her that she didn't have to give. Even with the curtains open it was dark and grey; it sucked the colour and the vibrancy out of the tiny room.
Fibromyalgia. She'd never heard of it before that day. Take these tablets and follow the instructions in the leaflet. They had said. You should return to something approaching a normal life. They had said. Don't worry it's not a life threatening condition. They had said. They being the medical profession. The same people that couldn't tell her why she had gone from swimming, dancing, playing rugby and working a physical job to staring at the ceiling drooling. Dribbling was nice; it created a sensation on her chin and it was one of the few things her body could still do. I'm not going to die! I'm not going to die! I'm not going to die! She wasn't sure at which point the jubilation of those words turned into dread. Dread that she would have to face the next day.
Lazy, self indulgent, mental were all names those who should care had called her. Her last visit to A&E had seen humiliation at the hands of a sadistic bitch of a doctor. She wished she had the energy to be lazy or self indulgent. The brain power to be mental was a dream she had. Maybe they were right. There were many days when it felt like she was watching someone else's life. She'd stopped living.
Children played outside the flats, throwing snowballs at each other. They built a massive snowman in the car park. The obnoxious man from across the road stopped his car and yelled at them because he couldn't drive into his spot. They swore back at him and refused to move.
She watched them and wanted to smile but she couldn’t manage the energy to feel the emotion to drive it. Caring about another required her to find some vitality that she couldn't afford to share.
Stuck three floors up she hadn't made it downstairs to the living room in a month. Outside would be a mission to boldly go where she had never been before – well it felt like it anyway. She tried to open the window, desperate to for the cold and to breathe the fresh air, but she couldn't. Her hand was too stiff to grasp the handle.
There was no response.
She remembered. Her mother had gone to the shops with her brother. Tears would be a release but she didn't have the energy. She lay back on her bed and stared at the mushy pea green ceiling. Her sensitivities meant that she couldn't change the colours of the room; she'd chosen the dolphin wallpaper when she was sixteen. At twenty-four it seemed childish and the hues evoked a cell in Wormwood Scrubs; some cells in prison had to be bigger and prisoners got an hours exercise. She knew each speckle on the ceiling personally. One night she'd named them. Seventy-two hours of pain: too sore to stand, too sore to sit and too sore to lie down. She had considered getting her brother to stick naked men up there but her mother wouldn't have liked it.
“We're home. You OK up there?” The front door closed. And she heard the rustle of plastic bags in the kitchen. She couldn't remember the last time she'd been to a supermarket. ASDA or Tesco – which one had they gone to?
“Yeah, Mum.” She wasn't OK. She had not been OK for three years. The novelty had worn off. Few people still remembered her, let alone cared whether or not she wasn't OK.
“Do you want anything?”
“World peace and perfect skin.” What she really wanted was to watch TV but she couldn't concentrate on anything and it bothered her eyes.
“Shout if you do want anything.” In an earlier life she studied for a degree and even considering a postgraduate course. On a good day, if she was lucky, she could read Thomas the Tank Engine or the Australian story about the Magic Pudding.
With bowed legs, she waddled to the bathroom. She didn't know why her knees wouldn't straighten up, her brain told them to but they wouldn't obey. All she needed was a pee. It was barely worth the trip down the landing. The walls in there were a cheerful pink. She sat on the toilet until she got together the energy for the walk back to bed. Pins and needles built in her feet until it was unbearable. She could feel the ring forming on her arse. The indentation would be something to feel later.
Attempts to move her feet failed. Damn! Life support only: when her body shut down all non essential functions. Her arms stopped and her head flopped. She had a choice – spend an hour waiting for the feeling to come back or....
That's right – total and utter humiliation.
Literally caught with her pants down. She wished. Sex was a distant memory and an activity she wished she'd participated more in when she could. Adrian had stuck by her until the drooling started and the bad temper has developed into a roaring fury.
Mum took her time. These days she seemed to be slowing down. In the early days, when she'd first come home everyone had leapt to see to her every need and comfort. Now they knew she wasn't dying the novelty had worn off.
“Oh, dear.” Her mother said. She could have been talking to a toddler who'd had an accident.
Damn! Bugger! Blast! And all other expletives. She wanted to use some stronger ones but not with her prim-and-proper mother around. Even in her head it felt wrong. Her Mum was even smaller than her at just barely 4ft11 and she'd aged recently. Hanging over Mum and having her pyjama trousers pulled up usually left them laughing but today her mother didn't even make an effort to smile.
“Tom! I need help.”
Crap! And now her brother was needed. Her mother and brother were laughing and joking, but whilst she heard the words she couldn’t process them into sentences. Her body remained stiff. They carried her back to bed. It always hurt her arms so much when they carried her like this. Laid flat on her bed she still wasn't moving.
“Try to sleep now.”
In other words one of my shows are on and I don't want disturbing.
Downstairs life went on without her. Her mum and brother cooked the dinner she didn't want. Lasagne and garlic bread it smelled like. It used to be one of her favourites. Her arms weren't moving and she'd need to be fed like a baby. Today, that would be a humiliation too far.
Outside children played, car doors slammed. Christmas was coming apparently. Like that changed anything. They'd be having fun and she wouldn't be able to join in. Her only contribution was needing cared for.
Oblivion in the form of sleep did arrive. At some point during the night her limbs broke free of their self imposed cocoon and the movement woke her up. The indentations from the toilet incident had gone.
She waddled to the window. The snow lay thick on the ground and the world glowed orange beneath the street lights.
Her brother snored in the next room.
Wallace and Grommit proclaimed one o'clock. Probably in the morning this time. Twelve hours had passed and the highlight had been getting stuck on the toilet.
She could not face another dawn.
Underneath her bed was the box. She'd planned this and it contained her note, financial details, will and the means to end her suffering: sleeping pills, painkillers and anti depressants. Since she’d been diagnosed she’d stockpiled all the tablets she’d been given that did nothing to make her life better. They ate her brain, made her itch and want to vomit.
This wasn't about dying. Her life had ended three years and twelve hours ago.
Her hand shook, but the thought of not dying and living like this for maybe another forty or fifty years drove her to take pill after pill. If God wouldn't answer her prayers and take her away then she had to do it herself.
Some said the pain was unreal that she just wanted attention, because every twenty-one year old on the brink of a fascinating new career throws it all away to lie in bed screaming in pain and drooling. Day after day. All she did was hold back those closest to her. Her head felt light and the road to freedom had begun. She'd read about the convulsions and losing control of her bowels, but it would be fleeting.
The brief note on her bedside table read:
To Mum and Tom
Heaven, hell or oblivion, no matter
for it will be bliss.
Taken from this Earthly shell to
a place away from pain
Don't fret about me.
I'm content to wait
until we meet again.
The Kimlin Family