Losses and hope

There’s a photo challenge running this month for CRPS awareness. Yep, Nervember has come around again and I’m sporting my orange awareness ribbon on my bag and have matching ribbon lacing my knee-high boots just to make it stand out more. Every year I’ll get asked about it and that’s the whole point. Raising awareness amongst people who wouldn’t come across the information otherwise. 🙂

One of the challenges is to post a poem or quote which describes the losses I have experienced as a result of CRPS impacting my life. And the very next day the challenge was to post a picture about hope.

The losses challenge resulted in me just writing from the heart, that bit was natural. The hard bit has been making myself post it.

The list of losses are initially from way back (I’ve come a long way in knowledge, pain management and personal growth these 16+ years) and the last loss is just 5 years ago (please don’t worry – I’m coping. The last line is less severe these days as I have worked to find new meaning in who I am. I am still grieving, but also living again).

Losing so much as a result of an acquired turn of health is enough to make anyone depressed but CRPS is known in the USA as ‘the suicide disease’ because without diagnosis there is no treatment, no support and crucially no understanding for a patient who has mystery pain which doesn’t make sense. People just want out. It’s too much. Too relentless. Often with no answers.

But loss of neurological function is different. It’s terrifying when you find out what’s happening but before that it’s just confusing. Everything is confusing. Basic conversations become really difficult because you just end up guessing all the time. And then you try to reply with something which hopefully is on the right lines to make some sort of sense. The likelihood of misunderstandings beginning and continuing is frustratingly high when we’re going through this.

Loss of family is so common for CRPS patients that it is surprising (but wonderful) when we meet a fellow patient who hasn’t.

It’s so hard to rise to the awareness month challenge and post this. I don’t like to focus on the old losses and I still struggle daily with the latest one. Egads! Okay,
here goes…

Suzy's photo challenge, 2015, Day 6

 

And because I can’t end this post on that note, here is the post about how I eventually managed to find myself and start to re-build my life:

The way forward for me after the greatest loss was to find who I am at my core. I had to anyway because loss of family meant a large part of my identity was no longer there. So I had to rebuild with me at the centre instead. It felt very alien to do so, and was rather like a rollercoaster ride but it was worth it.

Knowing who we really are at our core is one thing but having our identity built on that alone is quite another and it allows us to live that core openly and comfortably every day which results in a sense of peace and a kind of improved emotional suspension system which smoothes out the bumps. When we are truly ourselves resistance falls away. We can just be, because when our identity is rebuilt on who we truly are (instead of where we come from, who our family is, what others think of us, what we do/did for a living, societal role expectations and so on) there is no resistance. There is just us. Other’s opinions may affect our emotions but our sense of self is no longer affected by them. And from that point life kinda opens up. 

Suzy's photo challenge, 2015, Day 7

 

xxx

 

 

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Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

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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Sparkling determinedly for the New Year

Why hello there! Fancy meeting you this New Year’s Eve, come in, come in. And please excuse the sparkles! 😉

Christmas with Magic Dude’s folks was lovely. Okay,yes it’s true that I sat with my trusty hot water bottle most of the time, with my feet up on the footstool. And yep, it’s also true that I drank more fluids in one day than I can comprehend (pretty much equivalent to putting me on a rooibos tea drip)! And I admit that I tended to nod and pretend I understood what people were saying when I had no clue coz the multiple conversations had taken it’s toll and squashed any remaining ability to process information (unless someone said “Tea?” then the answer was easy)! And of course I thought of my missing family, but the choices of others are the choices of others. We need to hold onto who we are despite the losses and misunderstandings.

Part of who I am is the girl who always dressed up at christmas because, well, why not? I didn’t get to any other time and it felt nice to dress up. And this year I decided to have a giggle trying to make my fingernails look a bit festive. I was going for christmas trees and a snowman…

2013 Xmas nails 1

Yes, I do also paint the skin around my fingernails! It’s just easier that way!

2013 Xmas nails 2

Some bits of masking tape to leave a triangular shape to create the christmas three shape..

Christmas tree shapes, snowman shape with white nail varnish freehand (just blobbed two circular shapes!)...

Christmas tree shapes, snowman shape with white nail varnish freehand (just blobbed two circular shapes!)…

2013 Xmas nails 4

Ta-daaaaah!

Of course that was my left hand… painted by my dominant right hand.

How do you think the snowman turned out when I had to paint the other one with my useless left hand? 😉

Like this…

2013 Xmas nails 5

Haahahahaaa! It was looking kinda good up until that point, eh?!

(S’cuse the chip, I forgot to take a piccy of the comedy snowman til after christmas)!

I tried to paint on some eyes and buttons but I just got big blobs of paint everywhere, then I tried to wipe them off and… well… snowman-in-the-fog anyone?! Or Magic Dude said it might be a vomiting-snowman? Feel free to add whatever twist you feels fits the, er, artwork! 😉

So, here I am on New Year’s Eve and I’m gonna keep it simple tonight – sparkles will do the trick.

Of course I can’t go anywhere tonight, so I’ll be sat on my sofa with Magic Dude and our Local Friend. Am I ready? I’m so exhausted, and fainty, and nauseated, and… Bah! I’m gonna do New Years Eve from my sofa and it’s gonna be sparkly despite all that.

Checklist:

– One ballgown (yes, ballgown. <pulls a determined face> ! )
– Sparkly nails that don’t exactly go with the dress because I’m such a rebel!
– Christmassy headgear
– Party hats on standby
– Non-alcoholic mulled apple juice for me
– Warm fluffy blanket
– Hot Water Bottle
– Random christmas nibbles
– DVDs to choose from already by the telly

Sorted!

So let’s have a moment in our own homes where we pat ourselves on the back for getting through last year, for smiling and laughing despite the downsides, for making friends online who understand, for finding the ‘me’ in each of us that the health stuff never reaches. You are beautiful. You are strong. And even if your nails aren’t sparkly tonight, your soul certainly is. Sparkle my friends, I will be thinking of you all tonight and wishing you well.

Much love from me to each and every one of you,

x

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Something I didn’t think I could do…

For the photo challenge today…

I wasn’t entirely sure if I’d make it through my studies without the health getting impossible, but if I didn’t think that there was a chance of success then I wouldn’t have embarked upon that final module. So I have to think of something that I genuinely thought that I couldn’t do, which is nigh on impossible for me because I am one of those people who doesn’t believe in capping potential… who knows what we can achieve in the future? The last thing I’m gonna do is assume that I can never do things because then I’ll never try, and that’ll make it true whether it could have happened or not. So there is nothing that I think I can never do. Instead I work within my current health restrictions doing what I can and I enjoy the ride.

I enjoy the ride because living in the present is joyous. Okay yes, so there’s pain and crawling along the floor with my head spinning and such like, but there are also cups of tea, hot water bottles, sunsets that I can see through the window and much more. Why worry about my future? That’s not going to help me right now. Don’t get me wrong do I plan for my future, I just don’t allow myself to worry about it. I could worry about my health deteriorating, but even if I knew for sure worrying would only make the present feel worse. The thing with CRPS is that it is changeable. Change is built into the very fabric of how the condition works. And change can go either way: so some of my symptoms might improve. My pain management is in a whole different world to where it was years ago. My pain and my condition continues, but the way the pain and I dance around one another is more patterned than it used to be, we have a kind of truce. Neither of us is backing down, but there’s an ‘agreement’ of sorts! It allows me to plan for some activities and events that I could not have done in the past. I will pay for it in pain levels, but I plan for that too.

So who knows what we can accomplish in the future? And if that’s the case, why not start now? Losing old patterns of living, active abilities, friends who can’t handle the changes… well, after getting over the initial crapola that creates we then start to think things like… “What is really important to me?”, “What can I do for me that gives my life smiles and personal value?”, “What can I try that might help distract myself from the pain a little bit?”. And that’s when we discover a new feel to life and start creating our own new pattern. Some of us rediscover lost skills or hobbies and some of us discover new ones.

So when asked for a picture of something I did not think I could do, I just don’t think that way. For me it’s about something I did that I never knew I would do, with the emphasis on the not knowing it was in my future rather than not believing it was.

When we start creating our own new way of living within our current (but potentially changeable) conditions of living, it is a process of exploration and discovery. When I started new things (like this blog) I always said that I don’t know where it will take me but it will be interesting following the path and finding out. And the blog has taken me down paths I didn’t know were in my future. (You can see the blog for yourself though, so I guess a piccy of that would be a let down)!

When I was at a physical low a couple of years ago, I had to stop doing my twice weekly physio’ sessions at the gym because the Dysautonomia had become a real problem with trying not to pass out and/or throw up whenever I tried to exercise, and I felt really down about it. I handled it well for the first few months even though I knew I’d have a lot of ground to regain, but after two years it was a real concern that I could not get the physio’ that my legs required to keep to the delicate balance of activity and rest that affects pain levels. To my regular readers – please excuse me for mentioning my beloved Tai Chi again (;-) !) but for those who don’t know… Tai Chi is what I started doing in a slow-mo attempt to get my body doing some different activity twice a week. What I hoped was that it would help me get back to the gym and what I found was that I really enjoyed learning it so I knew that when I got back to the gym I was not going to give up the Tai Chi. That was it, though, the extent of my expectations! I just wanted to learn more Tai Chi and improve over the years. I knew that it would be a very handy health tool for my crinkly years if I could keep it up for the rest of my life, so that was the plan.

Instead, as regular readers will know, it took me down a whooooole different path!

Tai Chi Chinese New Year 2013

I still cannot get back to the gym, but the Tai Chi (thanks to my awesome teacher who saw and nurtured my potential, encouraging me every step of the way) led me to perform at a Chinese new year celebration wearing Professor Li‘s purple silks (passed down from him to student, to student’s student, then loaned to me 🙂 ). ‘Thanks’ to my CRPS journey I’m now pretty good at living in the moment which helps to keep the stress levels down (which helps calm the Dys’ symptoms). From my teacher’s point of view I demonstrated that I performed well under pressure, whereas from my point of view there was no real pressure from an audience coz the bigger problem was keeping my symptoms under some semblance of control! So really I demonstrated that I know how best to work around my condition to get a few minutes of apparently able-bodied performance! Because of this, my teacher took me to my first national tournament (ladies beginners class) where I shocked myself completely by winning gold. Then she took me to a different national tournament a couple of months later (this time a bigger classification group as all men and women were competing against each other) and I amazed myself by winning another gold. It opened my eyes to potential that I didn’t know I had. It’s been the most unbelievable year in the most literal sense because I still have trouble believing that all this really just happened to me!

That’s the thing about potential, it lurks sneakily just off to one side and it has no visible limits, It’s the exciting unknown, and the key is to travel the path enjoying each new achievement along the way because wherever those limits may be.. a) limits can be tested and we can improve, and b) aaaall achievements along the way are to be celebrated.

x

Three quotes, possibly not the sort you’d expect!

WEGO Health’s challenge for today is to post my three favourite quotes. I don’t think I could pick just three faves though! There are different quotes that I appreciate during different times, emotions and situations. I could get all deep and meaningful with my choice of quotes, in fact I’m going to… just not in the quite the way you might expect!

So that’s set the scene 😉 …. here we go….

Here’s a snippet about Magrat Garlick, who grows and becomes over several books. It turns out that she’s one heck of awesome when the day needs saving!

Terry Pratchett - about Magrat not getting walked over any more

This is written with humour of course, I’m not suggesting that we shouldn’t be good mannered. But the underlying emphasis is bang on – we have the right to speak up if we are being treated with disrespect. We have the right to live life as ourselves….

You are your own unique self. Be you….

Neil Gaiman - everybody has a song

Live your song, x 😀

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And here’s a few wise words from Nanny Ogg about letting go, xx

Nanny Ogg - passed a lot of water since then

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Oh all right, so I admit it, Nanny Ogg’s quote is rather a favourite of mine!* 😉

Much love from me, x

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*For anyone around the globe who is not familiar with the english proverb this last daft (and rather adorable) quote is based on..  “It’s all water under the bridge now” means that the topic being discussed is in the past and that any emotions involved with that topic are also in the past. It’s often a way that one person will let another know that all is okay now. Of course Nanny Ogg’s misreference to weeing is most likely done on purpose in a totally innocent way whilst she has a cheeky laugh on the inside! 😉

Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

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

Photo Challenge for CRPS Awareness, Day 30

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

Day 30 – A picture of you waving

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Helloooo…..

me waving from the tent, distant view

Oh wait, let me zoom in a bit…..

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Hellooooo….

me waving from the tent

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Photo Challenge for CRPS Awareness, Day 29

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

Day 29 – A picture that can always make you smile

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Pictures that make me smile… ooohhh, lots of piccies make me smile. PIccies of Magic Dude, of my friends, of my Bruv and his girlfriend, of Magic Dude’s family.. they all make me smile. 😀 Even the pictures of those who I have lost from my life make me smile at the happy memories from before the health took it’s toll that way.

I also create piccies that make me smile. I don’t mean beautiful photography… my wheelchair based ways of point-and-click-then-crop-it-later are really ingrained still! I often take silly pic’s, usually for the blog, including some not yet posted. They make me smile when they’re being taken more than afterwards mind you. There’s something about posing for some bizarre pic’ outside in full view of my neighbours which make me chuckle, tee hee.

Today I spent my physio’ time attending a practical seminar on Tai Chi with sword. I’ve never done any sword work before so I’m a total newbie at it. The uncontrollable variable seems to have been the arrival of the swords at martial arts HQ…. they didn’t arrive in time. So our teacher valiantly taught us with what we had to hand in the gym – some short poles. Rather than borrow one of the poles to practice with in the meantime I realised that it would be better to practice with something longer. There are moves where the sword touches the back of the arm and/or shoulder, plus the different lengths feel different to work with. So I looked in the footwell of the passenger side of the car and there was my inspiration….. my fold-up walking stick! Hehe

So here’s my latest silly pic’, it made me smile when it was taken and maybe it’ll pass a smile onto to you as well. 😉

Tai Chi Walking Stick

Please imagine that my non-sword elbow is actually at the same height as my non-sword shoulder! (- I always notice the wrong stuff when I look at piccies of my Tai Chi). But hey, I guess I am a sword newbie…. plenty of time to brush up on technique yet! 🙂

So there you have it, Walking Stick Tai Chi. Maybe this is my new Yoda style?! 😉

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