The Elusive Spoon

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…

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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.

“Right!”

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.

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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

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. 🙂

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Mission accepted. The search in town…

Physio’ session number 1.. spent in the smaller local town which has parking close to the shops. The shops themselves are all closely packed together which helps me to be more productive during the time allowed.

The Mission: to find a large pot for the stove that I can use to dye some Tai Chi silks!

Until now I’ve been borrowing my teacher’s spare silks for demo’s and tournaments and, as I intend to continue as long as my health allows, I figured it might be an idea to get some of my own so she doesn’t have to furnish me with her spare set every time.

The Dilemma: trying to find a colour which isn’t the same as other teams competing at the tournaments.

The Decision: to buy white silks and dye them. (Purply-lilac like the ones I borrow, or maybe a teal green?)

The Research: Turns out that although most home dyes require a bucket and some cold water, silks are more problematic. They require prepping first to open up the threads to accept the dye, and they require a pot on the stove big enough to fit them in. Hence ‘The Mission’.

So I planned the trip into the smaller local town as I had a couple of errands to run as well.

I queued up in the Post Office to post my friend’s birthday card to New York. (I’m so crap at remembering to post it early enough for it to travel abroad that I expect she is used to receiving belated cards from me by now)! Shifting my weight from foot to foot in the queue to try to keep the pain from increasing too much before I got to do the other stuff. (Queues are baaaad for pain levels 😦 )

I bought myself a replacement hot water bottle…. in a heat wave. That was a tough challenge! The only place that had any was the ‘Savers’ shop (hurrah!) and when I took it to the counter the girl at the checkout looked at it, raised her eyebrows, smiled at me lopsidedly and said “Really?”! Hehe. I don’t do normal! 😉

Hot water bottle, Hot Stuff

I then trekked in and out of the many charity shops in the two streets that comprise the outdoor bit of the town centre. The likelihood of a large old cooking pot being out on display was pretty slim so I asked in every store, and in every store they were sweet enough to check the back-rooms for me. But nope. No cooking pot.

Mission failed?

We-eell, I ‘mysteriously’ came home with a pretty trug to collect my veggies in
(I harvested some home grown rhubarb two days ago and somehow it would have been even more satisfying transporting it in a pretty trug instead of a carrier bag! 😉 ). I also found a selection of pottery spoons with a hole in the handle of each one… a) I always need more ‘spoons‘ and b) I had some sort of misguided idea about making some Spoonie-style wind chimes out of them or something! (Magic Dude would not be pleased with the noisy wind chime idea, though! So alternate suggestions are welcome! 😉 ). And I also found myself buying an unworn green necklace that still had the original shop tags on. Each from a different charity shop.

Charity shop buys

Okay, yes… Mission failed as I am still cooking-pot-less, but I feel pleased  to have survived the physio’, especially as it over-ran the time a little (not good for the pacing, oops, and not good for the pain levels, owwwww), but at least I have something to show for my efforts, eh?! And all this, including the hot water bottle, for less than a tenner so it must be okay! 😉

Current Status: Stuck on sofa in resulting pain as usual…
.                        Mission Large-Cooking-Pot still to be completed….
.                                     (gotta love a cliffhanger ending! 😉 )

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What superpower would I choose?

Hang on, what am I thinking? After all, I am ….dahn-da-da-daaaaah…..Gnomes Bane…..!

My superpowers include (nearly) endless patience, powers of remaining upright using messages from my Tai-Chi-honed leg muscles (when my head tells me that I should be falling over), very high levels of pain tolerance, and an almost unshakeable determination to keep going no…matter…what….(gritted teeth)!

Gnomes Bane (chortle)

What? They’re not actually superpowers?

Okay, okay. Let me think. Er, we-eeell,…. I do have a mutant extra set of wisdom teeth! (Not all of which have yet completed their attempts to push their way through the other teeth that are sat right in their way). I don’t know what extra wisdom teeth would enable me to do if I was an X-Man, (er, X-Woman? X-Person?), though. I’m not currently aware of any super-wisdom effects. Although I am still fighting to think and write through bemusing brain fog, so…maybe?! 😉

So, if I could have a ‘proper’ superhero power, what would I have? I can’t help but automatically opt for the self-healing one out of sheer necessity, really. But that’s so disappointing because it feels like I’ve had my superpower choice taken away from me. Everyone else would be wishing for an actual superpower and I would be wishing for something to enable me to function, which has the devastating (though arguable) side effect of also giving me life beyond all the people that I love. I don’t think that even the power of self-healing cuts the mustard in that case. Maybe all of us spoonies could wish ourselves well, and then spend our newly extended lives hanging out together and getting wise? (‘cept, of course, I’d have a headstart on that one, what with my mutant teeth and all)!

If I could have completely free rein, I think I’d go for telekinesis. That covers loads of superpowers in one. I wouldn’t just be able to move metal, or water, or rocks. I could manipulate any material….. Just think how handy that would be if I’ve locked myself out. I could just make the lock open. I could carry the shopping with ease. I could wash the dishes from a distance whilst I put my legs up to rest. Hell, I could float myself about between physio’s and save myself the legs pain. I could even float myself about whilst I’m horizontal so that I don’t have the near-faints! (I love the mental image that conjures up)! 😀

No longer would I be flagged as a lone, disabled woman if I have to phone for car breakdown service. Wheel needs changing? No problem….(screws up face and points a claw-shaped hand in the right direction)….there…sorted. And off I trundle. Wait a minute….I wouldn’t neeeed a car!

Yep, telekinesis would be cool. I wouldn’t be ‘normal’ as such. But I could potter round doing normal things, albeit in very unusual ways. The locals would have to get used to me floating horizontally round the supermarket. But seeing as I could be so helpful to them, perhaps they wouldn’t mind too much! And if they’re all busy checking the saleable goods by looking through the packaging, being part crocodile, and bursting into flames, I don’t think anyone would notice me floating surreptitiously by with a little smile upon my face, anyway.

I’ll get the cape ironed. I like this idea!

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Tick…Tick…Tick…Tick…SPOON!

Well I have a song stuck in my head at the moment. Not a song I’ve ever owned, but one I heard in the charts way back when. 80’s? 90’s? I don’t know. If I’d been asked to name Will Smith songs I don’t know that I could think of even one, (although I could probably sing the ‘Fresh Prince’ theme tune! hehe). But this one is in my head, and the words have changed because of what I was thinking of at the time!

So, what was I thinking of? Well, have you heard about the ‘Spoonies’? The Spoon theory is all over the internet these days. It was created by Christine Miserandino and it is essentially a great way to explain what it’s like to live with a condition that limits the amount of activity that you can do day-to-day.

It goes like this…

If you want to get an idea of what it’s like living with this condition, (in my case CRPS, but loads of conditions apply, Christine has Lupus), then here you go…..have a handful of spoons! Now…for each thing that you do in the day you lose one spoon. Once you’re out of spoons, then that’s it – you can’t do anything else. Not until you receive your new quota of spoons tomorrow.

It tends to initiate an ‘ah-ha’ moment in people once they are told that one spoon is not one whole activity, like getting up in the morning for example. In fact, we’d use a spoon to get up and washed, another to get dressed, and another to make and eat breakfast.

This aspect of the theory is what makes people start to realise why we have to plan our days so carefully. And why we often have to say no to doing nice things, because all our spoons usually get used up on just basic activities each day. If we ‘borrow’ a spoon from the next day we not only have one less spoon the next day, but our bodies may act up and give us more pain to contend with, as well. And if we want to do something nice and avoid the problems with borrowing spoons, then what do we not do today to free up the required spoon(s)? Not wash? Not eat? Tis a tricky little conundrum every day!

So it’s a jolly handy little explanation and I’m not surprised that it’s spread across the internet.

I’ve spent ages trying to explain to various peeps over the years about why I have to ‘pace’ my activity, and why it is that I can often appear to look as if I’m able-bodied during a physio’ but that once my physio’ time is up I then have to rest for several hours because I am experiencing large levels of pain. It’s even harder for people to make sense of what I’m saying because I, like many chronic pain sufferers, have become unbelievably good at hiding and disguising even really high pain levels. So much so that it has become an ingrained habit that I don’t even think about any more.

Chronic pain involves the inner workings of the body – damaged neurological signals and such like. So yeah, the Spoon Theory is waaaay easier for people to think about. It enables people to take on board the actual meaning, rather than get bogged down in complicated biological information.

So, thanks Christine. It’s a fab’ explanation, and I’m sure there are many people out there who are benefitting from this easy way to get across a fundamental aspect of their day-to-day experience to others.

‘Ah-ha, so yes, we get the spoon reference’, you say, ‘but why on earth were you singing a random old chart song?’

Well, I’m glad you asked. (Egads, I’ve been home-alone too long, I’m having a conversation with myself)!

There was a cartoon character on TV when I was young. Apparently he began in true comic format, but I was not aware of that until I looked him up online when one of my very good friends reminded me of the superhero’s existence just the other day. He is……(daaan daan daaaaaaan)…….The Tick!

Ever heard of him? In some ways he’s amusingly appropriate for Dys’ sufferers like meself seeing as he too has a taxed brain, (well, we have ‘brain fog’, but in my case it’s not too dissimilar at it’s worst!), he’s really strong, (okay, we’re not.. but emotionally and mentally we’re world champions just by basic necessity), and he has a tendency to fall over if his antenna are removed! Bwahaha. Love it! I have a constant battle with near-fainting and can’t find any sensible reason for it, so it might as well be antenna as anything else!

But most importantly of all, his battle cry is…….’SPOON’! (Bless ‘im). How very appropriate.

So yes, The Tick.

And it all becomes clear….my brain starts singing….

‘Tick….Tick…Tick….Tick…..SPOON!’

And yes, I found it hilariously funny at the time. I know… bless!

I find my chuckles where I can. 🙂

By the way, if you want to read Christine’s Spoon Theory here’s the link:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

And, (just in case you feel the urge to know), according to the internet, the song was my brain’s take on ‘Boom! Shake the Room’ by DJ Jazzy Jeff & the Fresh Prince in 1993!

Bestest wishes to you all, and a big hello to all of my fellow Spoonies, x