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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 x

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National Poetry Day in the UK

The Now

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I’m having a transition

I don’t feel quite right

It’s not bad

It’s just…

The full extent is not yet in sight

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I’ve tried to put it into words

But they only show the edge

The words are right

The truth is there

But I can’t see past the ledge

So

What I think is happening

Is only half the tale

Or less maybe –

I just don’t know how deep the scale

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I think I’ve passed another milestone

Or I can feel it by the way

I yearn to peek

And see what’s what

But a day still lasts a day

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I cannot rush to find out

I can only live each day

The Now

That’s when I like to be

No peering in the grey

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This trembling within myself

Has not yet reached my brain

The body knows

But I do not

And

I must not entertain

Speculations

That might not help

They are not my realm

The Now is home

The Now is mine

And I am at the Helm

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x

Poem of the sunshine heart

I was doing something else on the laptop when some words started linking together in my head, so I opened up a blank page and this is what happened… 🙂

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Today my body doesn’t like me but I’m not surprised
There’s lows with this condition but I know there will be highs
I did too much yesterday and that was down to me
I went to class *and* hospital because I like Tai Chi

So today I will be resting lots with laptop and no frown
My ‘pacing’ will be well controlled to calm my system down
My ANS will slowly calm, my pain will be less shouty
It’s hard to work around this stuff, but I’m feeling mighty

We may be pushed to limits but we’ve found out who we are
The inner oomph is revving and it’s gonna take me far
I won’t quit, I won’t give up, life is to be lived
I’ll grab the opportunities so I don’t end up miffed

My old lady years are far away but I’m already creaky
I pace myself, manage pain, and basically be sneaky
I may be quite severely ill, but that’s not stopping me
I’ll live my life and love the world, be all that I can be

In every day there’s shiny things to make me laugh and smile
The smallest things are worth so much I always pause awhile
To grab that special moment, make it last, to make a note
A shaft of sunlight, cup of tea, a dancing lit dust mote

There’s more to life than who I was, than what I used to see
Life progresses and we grow, the beauty is all free

I started believing in myself,
.                                           opened mind and heart
And all the love was out there, waiting.
.                                                            The ‘end’ was but a start

x

Elle and the Auto Gnome, sunlight through autumn branches

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What I did on my AWOL-idays

Goodness me, I’ve missed being here! But where did I go?

Last Spring a Tai Chi mag’ asked for articles and I offered to write one about how much Tai Chi has helped me with my health issues. The tricky part was that they didn’t reply until this Winter, and you know how much pain we’re in through Winter, right? Yeouch! So I had to concentrate on writing the article as I was having far less Brain Time to write. The trouble began when I was subsequently asked a few extra questions and instead of them being practical health questions they were more about my experience and motivations…. and then my brain fell out.

The end! Eek!

I still don’t have much brain, but that’s hardly surprising coz I’ve actually been doing rather a lot while I’ve been missing my blog.

In the UK we have a cliche of the homework title that we were all had to write for when we were young children at school: “What I did on my holidays”, but as I’ve been awol I guess it’s “What I did on my awolidays”. Here’s what’s happened since I last got to write to you…

I spent a lot of time creating a CRPS FAQ for a support group that I admin’ in, and yes – it is to be uploaded here too. Most of it is now transferred to the weblog so I’ll be able to post it here soon, x

My beloved car, my companion for 7.5 years, started to keel over and I had to part with him. The Magic Dude and I have bought another but it’s not the saaaaaame!

I had lots of dentist appointments after losing an old crown from a molar tooth.

I had a haircut. That counts as ‘news’, right?! 😉

I finally got to go to a graduation ceremony for my MSc that I completed with my own CRPS research last year. The Open University do a good graduation ceremony 😀
P.S. I wore high heels across the stage… take that CRPS! Mwoohaaahaaa! Of course my wheelchair was nearby for the rest of the day, but, y’know, rawr!

I finally got to go and visit Stone Henge. Woot! As I now live on the south coast of the UK it wasn’t that far to travel and the wheelchair allowed ambling around the visitor centre and going for a cup of tea afterwards too.

Stone Henge

I went to see Giant Steve 2 at the cinema! (That’s Captain America 2, of course 😉 ). Although it was on the same day as the trip to Stone Henge (what was I thinking? Doh!) so I spent the whole time trying not to pass out!

Near-syncope at cinema

Not doing a very good job at guarding Magic Dude’s popcorn, eh?!

I finally got to start the salt tablets to see if they’d help the near-syncope at all as it’s been getting worse all year so far (more on that to come in a later post).

Lots and lots and lots of Tai Chi practice during physio’-time and in-my-head practice to strengthen those neural Tai-Chi-ing connections when I was able to do so. This was in preparation for one local and two national tournaments.

All sorts of doctors appointments for blood tests, blood pressure monitors, discussion after I ended up in Accident & Emergency (ER) one day and chasing up a nightmare referral to a local cardiologist (which still isn’t sorted). So you know, the usual!

I taught my first class of Tai Chi! Wow! My teacher was unavailable for a week so the two classes that I usually attend anyway as part of my physio’ became ones where I physio’d by teaching instead. Cor, who’d have thought eh? 🙂

I found that I have had so very horrifyingly little Brain Time that I turned to gaming in the last few weeks of the run-up to the last national tournament to let my brain and body wind down together. Magic Dude has had to replace his old laptop and he’s now got a sparkly newfangled one so we decided to finally try out the online Lord of the Rings game. 😀

I went to a concert – Seasick Steve, and he was aaaawesoooome! It was stoopid timing with the tournament stuff, but he really was ace and I really am stubborn!

Concert, Seasick Steve

I’ve spent the last few days away as poor ole Magic Dude hasn’t had any time off work for so many months (except to drive me to and from appointments and the tournaments) and I’ve been struggling with pain and near-syncope highs of 9s for many weeks now. So we got away, we saw Things, and we did Stuff.

And, in true ill-person style, I am now trying to recover from the few days that we spent away!

And now I’m back and have a huuuuge amount of things I want to do and there’s never enough time to do it all in. At least, there’s never enough time where my brain is working well enough and my pain levels are low enough to do all of the things I want to do, but you know I’ll try anyway!

More to come soon,

Hellos and hugs and bestest wishes from me,

x

It’s health activist nominations time!

Yes, it’s that time of year again. It’s time for the third annual health activist awards when we get to vote for all of our fave health activists / bloggers out there who have made a difference to us patients. 😀

wego-health 2013

I’ve been happily voting for bloggers, it’s so fab’ to get to share the love 😀

All you need to do is follow the link here and add the weblog (or Twitter or Facebook information depending on where they write and post), and click on the award that you are nominating them for. You can do so anonymously if you prefer. When asked for the nominee’s contact info’.. an email, Facebook page or Twitter account are all ways for WEGO to let them know that they’ve been nominated.

Of course if you want to vote for little ole me I would not complain! 😉 In fact some of you must’ve been busy as WEGO Health have informed me that I have been nominated for three awards…. wheeeeee!

You can ‘endorse’ me on my nomination page if ya like. Only one of the awards I’ve been nominated for is showing on there at the moment, though, so here’s the relevant prettification for this post…

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hilarious_titled_transparent_2013-10-22

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I started by nominating someone for a health geekery award! There’s one blogger who ‘geeks out’ at research even more than I do so I just had to get in there and vote, hehe Go on, share the love people! 😀

x

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Inspiration

The online Facebook community of CRPSers has recently been asked to write their own inspirational stories for possible inclusion in an “Inspirational CRPS Story Book”. I chose to write about the Tai Chi rather than the academia simply because physio’ is a need that we all have as a crucial part of our pain management, and the possibility that it could be less of a chore and more of a joy is pretty darn cool! 🙂

I have been advised by the lovely lady putting the book together that it’s fine for me to post this on my blog for my readers to see. So this is what I wrote….

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Inspiration is one of those words that won’t be pinned down. You can’t point at it and say “see, look… that is an inspiration” in the same way that you could point out a chair or the colour lilac. Okay, well you could point at something that you find inspiring and say that, but the person you’re talking to may disagree, or they may feel inspired in a totally different way.

And it’s not only a personal thing, it’s also an out-of-the-blue thing. When we feel inspired by something it is usually something that happens in a moment, or it’s crept up on us somehow and we become aware of it in that moment. It is a response that involves our emotion through personal interpretation. It often links in to our own joys and pleasures in life, our dreams, our morals, our hopes. Maybe we saw a picture that we found inspiring… perhaps it made us feel good about the world and want to do more good ourselves, or it inspired us to paint, or move home, or phone a friend that it reminded us of. Inspiration can come from anywhere and at any time because it comes from within. It is often sparked by something external, something we’ve seen or heard perhaps, but it can also be sparked from within – our own thought process can lead us to inspiration. Inspiration is so wrapped up in who we are and how we interpret what we see, hear and feel.

If someone says “you should try this…”, it’s not inspiring on its own. But if it sparks your interest, gets you intrigued, makes you feel inspired to do it, then that’s a different thing altogether from just trying it because someone said that you should.

If we are inspired to do something, if we are interested, motivated and involved in what we’re doing, then we are also more likely to see it through. Mind you, I say that as someone who keeps trying to find the time to get back into my artwork but failing to see it through. It’s not that I’m not inspired so much as that I don’t set aside time to allow myself the enjoyment of it because it takes up valuable activity time which I usually need to complete mundane tasks like cooking or washing dishes! I know what I want to paint, I just keep ending up crossing other things off my ‘to-do’ list instead. Being inspired is one thing, but making time to enjoy that inspiration is a decision that is easy to push away. I know from personal experience!

Just about two years ago as I write this I was inspired to continue with something new. Starting it was more owing to necessity, but feeling inspired to continue, now that’s the magical bit!

My CRPS story is a long one so I will not recount it in any length. It’s been nearly 14 years since injury and onset as I write this. It took 6 years and many medical roundabouts to get a diagnosis, and with no medical support or knowledge of the condition whatsoever it took me about 10 years from injury before I began to find out that it is much much more than ‘just’ the second most painful condition known to medical science (after terminal cancer of course <3). So suffice to say it includes screaming pain, wishes of no longer existing, loss of friends through their inability to cope with my new reality, having to give up work, using crutches, a wheelchair, lack of food and nutrition through inability to shop/cook/eat, waving goodbye to my future career that I was working so hard towards, severe muscular atrophy, and even loss of family once the autonomic and neurological changes hit their fastest downward slide yet.

I could bore you with details. But if you’re a fellow patient then you know the score already, and if you’re not then I think this book will contain enough detail already. Living with a progressive health condition strips away your former life and even many of the people that were in that life. It leaves you with nothing but yourself, and it is easy to wonder where even that went until we begin to separate who we are from what we used to do and who we used to know. I was me when I was able-bodied and pretty healthy, and I am still me now that I am chronically ill and disabled, it’s just the way that I express my ‘me’ which has changed. ❤

So, I started a class more owing to need as I had been unable to continue with any gym physio’ sessions for two years since my additional autonomic dysfunction issues had set in (a common co-morbidity in CRPS patients). The lack of gym physio’ was taking its toll on my body and the extent of symptoms and two years of backsliding whilst continuing to deteriorate made it clear that I wasn’t going to get back to the gym anytime soon. My boyfriend came home one day with some information about a Tai Chi class that had recently started up at the gym that I was still a member of.

It made sense to try it. I’d always wanted to learn a martial art and Tai Chi is a slow-mo version! And from a physio’ perspective it ticked a lot of boxes – gentle, slow but weight-bearing and it is good for balance, core stability, leg strength, confidence of movement, stride length etc. All good reasons to give it a whirl. So I went along and tried it. And I really enjoyed it. The teacher was also trained in fitness as well as having seriously good qualifications, experience and multiple trophies from around the world. I fell on my feet there and no mistake!

I loved the first lesson and I felt inspired to continue. The more lessons I attended the more inspired I felt. I found that Tai Chi is harder to start off with because that’s when we’re learning the basics, and as I took on board more of the principles of how the movements worked the easier and more enjoyable it got.

It no longer felt like it was the ‘other’ option to my usual gym physio’, although initially I was hoping that I would still get back to the gym eventually. Not that I would have given up the Tai Chi, mind you. It even turned out that I’m not half bad at it.

So here I am just over two years later and I now have two national gold medals at beginners level for my Yang style Tai Chi! I am currently learning Sun style and sword Tai Chi as well. I adore my new physio’s and intend to keep at it into my old age as the longer I can remain active the longer I can better manage my pain levels into later life. I would love to still be able to do a slow mo’ crescent kick in my old age! 😉

The Tai Chi classes were cut at the gym so, seeing as the only class I attended there anyway was Tai Chi, I ended my membership there and moved over to my teacher’s martial arts club. Next year I’ll be at intermediate level and I fully intend to compete again at the nationals because a) I enjoy it so much, b) it’s wonderful to achieve something when so much of the time I am so limited and c) I’m proud to be performing Tai Chi amongst able-bodied competitors despite being chronically ill and only having small amounts of physio’ time in which to do it.

Becoming ill and becoming disabled takes so much away from us, but I’ve found that what it has really done is allow me to explore another skill set that I never knew I could have. We can achieve so much more than we realise. The key is trying something out and seeing if it inspires us. Sometimes it can open up a part of what makes us who we are that maybe we thought we had lost – there it is after all, it was still there all along,… I am still me in this new form.

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Tai Chi National medals, 2013

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If you’d like to write your own inspirational story, or perhaps a friend or family member would like to do so,… yes, I did say that… whether you are a CRPS patient or a friend or family member of a CRPS patient then feel free…. all stories are welcomed and 50 of them will be published in the book (you can choose whether to be named or anonymous). Here’s the Facebook page for the endeavour… https://www.facebook.com/InspirationalStoriesForCrpsRsd?fref=ts and email your story to RSDCRPSInspirationalStories@yahoo.com

No story is not worth telling. And writing this doesn’t have to be a daunting task because it is simply a chance to write about something which has helped you through. Maybe something has inspired you to keep at a hobby, or keep up with the physio’, or perhaps to study, or start something new, or…. Maybe you are a friend or family member who wants to write about how what inspires the CRPS patient that you know, or how you are inspired by them / their attitude / their determination / …, or how you think that they inspire others… and so on. Whatever it is, there is someone out there who will be inspired by your experience, and that’s what it’s all about, x

The key theme is ‘inspiration’.

Flex your typing fingers people, or get your favourite pen out, and have a little jot-stuff-down moment. Don’t be afraid to write, it’s a wonderful experience, and there will be an editor on hand so if you’re nervous of the brain fog kicking in or the kids/pets/postie interrupting your flow, don’t worry – it’s the story that’s the important bit, not how you write it, x          😀

I’d love to hear your comments below. What do you think of this post, of the opportunity to write and share for the book, of the book idea itself… anything, I’d love to hear your thoughts. Big loves from me, x

Cluster migraine, a moment of painy poetry!

Migraine

Guilty as charged!
But as a cluster migraine goes oooon and oooon for days (and sometimes weeks) and being online for a while is actually a helpful distraction during the lesser-uber-pain periods.

In fact I spent some of my lesser-migraine time writing this….!….

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Cluster migraines are not my friend,

I’d like this one to reach an end.

Swollen neck and throbbing brain,

Battling over and over again.

Hot wheat thingy round my neck,

Will ease it off for just a sec’.

Painkillers don’t help enough,

Anti-inflammatories, combi’ stuff.

Next will be the cooling patch,

Stuck to my head, (I’m such a catch!)

When I can’t stand sound,

It’s getting worse,

When I can’t stand light,

I inwardly curse!

Off to bed to lie in the darkness,

Another attempt to boot this daftness.

Stoopid head giving me hassle,

I want to be up, all tappity dazzle.

Nope, cluster migraine, doing its worst,

Dastardly bugger, but not my first,

I’ve had these for years now, on and off,

If it’d just go away I would happily scoff,

At its absence and at my winning through,

But it’s not gone yet, sooo totally poo!

Rhyming through the pain,

Total weirdo.

I should be in bed,

But I’m still here though!

Maaaaan, I’m tired of migraine days,

Too many in a row,

I’d like to kick it into touch,

The blasted so-and-so.

Ah well, kettle on and make some tea,

Gotta move, it’s physio time for me….!

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Migraine 2

That’s science, that is!

x

Pictures sourced here.

Photo Challenge for CRPS Awareness, Day 16

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 16 – A picture of someone who inspires you

As a chronic health patient it is now par for the course that I meet even more inspirational people to add to my list of ‘wonderfuls’ from over the years. There’s something about getting dealt crummy health that makes us fight harder, find the silver lining or, if it’s well hidden, create our own flipping silver lining! 😉

Today I choose to mention a fellow blogger who applies her love of science, her medical training, her experience living with CRPS and her superbly creative and wonderfully active mind to the big jigsaw puzzle that is CRPS.

Many of us live with the condition, many of us try to find out ‘what is what’ to help us work with our doctors to figure out how to treat our individual version of the complex disease. A number of us work to share the information we find to help our fellow patients, whether through friendships, support groups, blogging, information groups or websites. Not so many have the background, the determination and the sheer ‘non-specialist’ cheek to try to help unravel the mysteries of CRPS themselves. But, as I said in a previous post, is it exactly what is useful in what is effectively an informal, multi-disciplinary, international think-tank.

The blogger in question is Isy Aweigh. And she is one of those with the high level, expert-patient savvy and determination. One of those valued thinkers, and extra special for her loving heart. In short, she’s pretty darn fab’, (but seeing as she’s my friend perhaps I’m rather biased 😉 ).

She is fab’, though! 😉

Anyone who’s visited my blog before probably knows about my penchant for Tai Chi, and possibly even seen my post about my last tournament and what it means to me as a chronically ill patient. I tend to set my sights unreasonably high to see where I can get to, rather than set my sights lower and risk inadvertently capping my own potential before I’ve even tried. Well, Isy has done the same on a mega scale, and whatever the outcome is she will learn so much about what her body can be capable of, what treatments / recuperation techniques etc work for her body. And whether she marathons her way to the original goal, or whether the goal morphs into something different to accommodate new health info’, the experience will be a huge personal journey and deserves loud enthusiastic applause every step of the way. I for one shall continue to read the inspiring exploits and insights of my treasured friend.

Here she is, the one….the only…Isyyyyy Aweeeiiiggghhh….. (and Ari the cat 🙂 )…

Ta-daaaah!

This piccy is from Isy’s blog over at Living Anyway.

(Love ya, chick, x)

WEGO Health Activist Writers’ Month Challenge 2013

I attempted the WEGO Health Activist Writers’ Month Challenge (HAWMC) in April last year. I was trying to write one post per day for the challenge. On the 7th day I wrote about my resulting loss of brain and had to stop.

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

After that I wrote the occasional post but I had learnt a valuable lesson about pacing my beleagured brain as well as my inconsistently inept body.

I’ve just completed my study dissertation and so this HAWMC 2013 I have one less brain-factor to consider, and a substantial one at that, (although bear in mind that flexible study sessions at home were only a random, once in a while affair with my mostly lack of brain. Tough gig). So let’s see how I manage it this time, eh?

After writing the last bit of the dissertation I am in a major CRPS pain flare which is increasing the level of dysautonomia issues as well. So I don’t for a moment think this will be easy, or even that I can complete the full challenge and post every day of the month. It’s just not going to happen. But I do think it’s about time I got to come back to my weblog hub and spend some time hanging out with you after my study-induced hiatus. I haven’t been here as much as I’d have liked to have been. I’ve got some updating and catching up to do.

I’m going to give the HAWMC a whirl, though. I’ll try to take it carefully to avoid flare, but I know it’s going to be tough. In the same month I have a major consultant appointment, a disability benefits assessment and a physio session that I hope to spend doing Tai Chi in front of people instead of in my living room. All of these things will involve travel (as a passenger) and stress (from the challenge of managing my health in trickier circumstances than usual) which means the pain levels will rocket some more. April is going to be spent battling flares because I just have too many things in one month. Yes, three appointments in one month is (for my body) a lot to deal with and it will cause major health repercussions, (not something that I expect my assessor to comprehend in the health ‘assessment’ as I’ve been advised that none of them have any training in my complex, variable condition whatsoever. Terrified much?)

So yes, April. Not going to be an easy ride this month. The ‘assessment’ and the appointment will be causes of stress for different reasons (one because there’s no comprehension of my condition to assess my related variable functionality, and the other because of the amount of travel involved). So I’m hoping that occasional short Tai Chi physios will help me to battle through the pain, stress and dysautonomia flares, in conjunction with oodles of hot water bottle rest and gritting of teeth when the pain gets off the scale. Don’t you just hate it when you begin a ‘busy’ month (by my body’s standards) already in flare? Ah well, I like a challenge, right?!

I know that the act of writing for the blog will be a good distraction at times, and at others it will be impossible to write owing to the state of my health.

Elle and the Auto Gnome, at the laptop

To begin the April challenge whilst trying not to scream with the pain is not my ideal beginning. But it is the way it is and I will keep writing whenever I can.

So here’s to some varying themes and inevitable silliness along with many hot water bottles and cups of tea. Here we goooo…. 😉

x

Dissertation deadline day!

I was there to witness the very start of the day… that bit of the new day that turns up right after midnight. With not much brain-time I have to study a bit, rest a few hours, study a bit, and so on, so it takes me ages using a paced-brain approach, but I get there eventually! I had lost three months to worsened Dysautonomia symptoms and CRPS pain flare after two days of tests in London last November so my planned and calmly paced timetable had gone out of the window. About 1am I figured I could leave the rest of the sorting out for after some sleep but the pain had soared so high in my legs that I was stifling a scream. I continued stifling that scream for a long while and eventually managed to crawl off to bed sometime after 3am. Not the best start to what needed to be a productive day!

This was my dissertation deadline day, and here’s how it went….

1. Breakfast, 1st physio’

2. Check conclusion and abstract/introduction

3. Pour boiling water over fingers whilst making a hot water bottle for legs pain, doh!

4. Re-write bits of conclusion and abstract for far longer than I should have

5. Repeatedly fail to find the number references for the anonymous participant quotes

6. Cup of tea

7. Finally find them (hurrah for noting numbers in my Research Journal!)

8. Try to re-read conclusion and abstract but find that my brain is not available

9. Faulty fight or flight response kicks in (ah, The Fear!)

10. No choice but to throw caution to the wind and print 4 copies of the dissertation (324 pages in total.. it takes a while!)

11. Spot a typo’ in the original survey! meh

12. Sign all 4 authorship statements (with 4 different looking signatures, um)

13. Take photo’s of the bombsite style living room!……

Dissertation bombsite14. Use my 2nd physio to drive to a store where I can park right outside to get the dissertation copies bound

15. Whilst waiting for the binding to be done, I physio-wander round store in a surreal state talking randomly to employees

16. Drive home

17. Take photo’s as I parcel up the bound copies with all the additional paperwork

Dissertation parcelling up

18. Hang around a bit to see if Magic Dude will get home in time to drive me but no such luck, so I steel myself to drive into the village to post the parcel off

19. Dissertation is in the post, hurrah! (Post Office lady keeps reading the address trying to figure out why I am smiling exhaustedly about something which is “important” and needs ‘proof of posting’ (It says ‘dissertation’ on the address label, and I wonder why she keeps expecting to find more info there!)

Bye-bye parcel, I hope the markers are kind!

Bye-bye parcel, I hope the markers are kind!

20. Walk back to car park (I don’t really know how I’m still functional at this point!) and suddenly I break out in a grin.

21. The couple who have just parked their car next to mine look a little concerned when the lady who has just thrown her hands in the air whilst gleefully telling the world “It’s gone” starts walking towards them! 😉

22. Drive home. Still no Magic Dude. Put the bins away despite the pain. Stupid thing to do but I don’t want him to have to sort everything out when he gets home. I know I’m in for a Flare Extraordinaire as it is.

23. Tidy bombsite up a bit.

24. Receive surprise celebratory gift of gateau from Magic Dude on his return 🙂

25. Realise that I never had any lunch

26. Accept fresh hot water bottle and a cup of tea from Magic Dude

27. Engage Sofa Slug mode

That was three days ago and I am still totally exhausted and beginning to flare even more. I hope I’ve managed to do enough to pass despite the health issues. Fingers crossed.

Now…. sleep, need more sleeeeep, and ohhhh the paaaaiiin! *grimace*

Whatever the official outcome, whether I pass or not, this counts as a win for attempting, enduring and (hopefully) surviving! Owieee and yet also hurrah!

x