This is written for Dysautonomia Awareness month and is spoon related as a result of Christine Miserando’s well known “Spoon Theory“. This is a bit of a day with a CRPS & Dysautonomia patient…
Oh no, really? Morning already? How did that happen?! I mean it’s not like I got any actual quality sleep or anything! Ugh!
Scrunching her eyes up and contracting her muscles to pull herself back under the covers Elsie tried to come to terms with the time.
Yep. There’s no getting around it. It’s definitely morning and if I don’t get up I’m gonna be pushed for time.
Flopping the covers back she raised herself up slowly then waited for the spots of light to stop dancing in front of her eyes before attempting a full upright position.
Scooping up a pile of cutlery next to the bed, and then returning one to the bedside cabinet, she reached for her mobile phone to check the time. 9.30am.
Oh no, I’ve only got an hour!
A brief look of panic crossed her face before being replaced with one of intense determination.
Pushing herself up to standing she moved stiffly across the bedroom, being very careful to step overly widely around the corner of the bed.
No bruise that time. Hah!
Slowly becoming a little less bent over as she walked to the bathroom, she piled the cutlery on the windowsill as she reached for the toothbrush.
With clean teeth, washed body, brushed hair and an empty bladder she made her way back to the bedroom. A little more alert and minty fresh than before. A small pile of cutlery now also sat on the bathroom windowsill but the remainder was clutched in one hand and got deposited on the bed as she found underwear, tracksuit bottoms, a couple of layers and her handbag. After dressing she placed a couple more pieces of cutlery on the bedside cabinet, before stuffing the rest in her bag with the mobile phone and heading off downstairs.
How am I doing timewise? Checking her phone again. Pretty good. Still time for a proper breakfast. On went the kettle, into the microwave went the porridge, and she started counting out supplements, vitamins and medications into a pretty coloured shot glass. Tea made, porridge mixed with scrummy cinnamon, tablets collected together, hot water bottle made… all went into the living room and she turned the TV on for company before collapsing on the sofa.
Placing the hot water bottle under her legs and pulling a nearby blanket over them she grimaced a little but only for a moment. Then that look of determination returned again. Reaching for her bag she removed some of the cutlery, placing it on the table.
Hmmmm, this bag’s getting light already.
Half an hour later and once again standing upright, Elsie makes a soft drink to put into the bag along with a bag of ginger, half a bag of salted pumpkin seeds kept shut with a metal stationery clip, and her collapsed practice sword.
“Trainers! Can’t be forgetting them now, can I?”
I wonder if my neighbours can hear me talking to myself? Hehe
Coat, bag, keys, flask, mobile, trainers, insoles…. yep I think I’m ready.
Reaching into her bag she removed several items of cutlery and left them on the coffee table before locking up the house and settling into the car for the short journey into the outskirts of town.
As she pulled up into the car park at the industrial estate there was a single piece of cutlery lying on the passenger seat. After finding no parking spaces and all the disabled bays taken she had to use a space outside on the main road to walk from. Before leaving the car she placed her disabled parking badge on the dashboard and a second spoon next to the first and then walked to a business unit where she greeted classmates and teacher and started industriously putting on her trainers and doing some stretches that have a tendency to make other people’s eyes water. But that’s hypermobility for you!
After 15 minutes of calming Chi Gong she felt more separate from any stresses and strains but had to drink some of her lemon squash to try and reduce her body’s urge to faint. Some glugs of fluid later and the class were moving in time to the music for the Yang style 24 form of Tai Chi. It’s the form often seen practiced around the world and it felt good to go through the moves together as a group and to feel the body responding to what was being asked of it. The familiar moves being reined in by Elsie so that she doesn’t topple over as often nearly happens early in a lesson.
Good thing the teacher knows about me or I’d have a list of corrections as long as my arm!
While the others were chatting about the moves they’d just worked through, Elsie quickly ate some ginger to try to reduce the nausea, had another couple of swigs of fluid to try to reduce the faintyness and then she expanded her practice sword to it’s full length to start some individual work. The class numbers were small today and there was a little more space to wave the sword around!
It felt good to work through the sword moves she knew so far, but after some corrections from the teacher the fluidity and meaning of the moves increased and it felt great! No, it felt awesome! How wonderful to be upright and moving with purpose. She knew the moves could look beautiful if she worked at it hard enough, so while the lesson lasted she went over and over and over… just getting the moves more clearly etched into her head and into her ‘muscle memory’ for an even better foundation to work on. Fantastic!
When she returned home she found that getting out of the car was already difficult. Walking as well as she could she went indoors to put the kettle on again. The pain was already rising. She could not stand long enough to make any food for a midday lunch so she grabbed a banana and a protein flapjack. With hot water bottle and a cup of tea she returned to her spot under the blanket and this time she lay down flat to try to help her body recover from the near-fainting that had come on.
Reaching for her bag she removed several pieces of cutlery and looked at what she had left. One piece for everything she did. Starting with a finite number she had to lose a spoon for every move she made. One for getting to the bathroom. One for getting washed. One for getting dressed. They go down in number so fast it makes her days very tricky. Carefully placing her remaining spoons on top of her bag she figured she might have enough to get ready for bed later, but not enough to get any food.
Sighing she lay back and waited for the heat of the hot water bottle to help her muscles relax a little, for the pain levels to reduce a little from the high levels to something a little less screamy.
She knew she’d not be able to move for several hours.
Good thing I forced myself to the bathroom already or I’d be dying for a wee by now!
Resigning herself to the hours of pain ahead she smiled to herself.
An hour ago I was doing sword Tai Chi! What an achievement!
She grinned and adjusted the position of her legs. Then turned on the laptop to see how her fellow patients were doing that day. Her brain was not up to much at all, but at least she could say hi and check everyone was okay.
She settled in for the long haul. Distraction would help pass the recovery time. Then it would be time to physio’ again. That’s when she would decide what to do about not being able to get food. Maybe one of those vitamin powdered drinks, she could possibly mix that with milk before running out of spoons entirely and ending up in a mega-flare.
We’ll see. That’s later. This is now. And right now I’m chuffed that I learnt more in my physio’ class today.
Spoons are more than cutlery to us ‘Spoonies’, they are our metaphorical spoons that help to describe our medically induced limitations to others. We try to make spoons last longer, try to get the most value out of each one that we can. We desperately wish we had more of them to be able to function a little more during each day and often send virtual spoons to each other in solidarity for our daily challenges. Sometimes we ‘borrow’ spoons from the next day, a kind of advance on spoons that we will severely pay for later in health repercussions.
The ‘Ishishara Spoon’ created for one of Jasper Fford’s books
Picture source – no longer available but it was a challenge on Jasper Fford’s Facebook page to use various images. He was intrigued to find out what we might use them for!
You can still see this artwork on his webbie here though. 🙂