I think I can, I know I can…

For today’s WEGO Health challenge….

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I think I can get my doctor to talk to the consultant about alternative ANS stabilising meds.

I think I can get my head round some of the statistical tests for the research! 😉

I think I can increase my core stability without nearly passing out!

I know I can get my symptoms level enough for the few minutes required to be able to compete in the Tai Chi nationals next year 😀

I know I can co-write a paper on CRPS

I know I can rest in the knowledge that I’m never gonna run out of tea!

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Magic Dude at Riverside Pk

Magic Dude by the river as I take autumnal piccies

And I can attempt/do these things thanks to the wonderful support, love and understanding from my truly awesome Magic Dude! I never get tired of his company, he makes me laugh, gives me hugs and my heart sings to know him, xx

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Introducing myself….

Witch on the PS3

Hi, I’m a witch who plays on the PS3 in between bouts of looking spooky on the doorstep and handing out sweets to kids dressed up as skeletons, pirates, cats and witches…. Oh wait, no…. sorry that was laaaaast night. Doh!

Let me try that again….

From my Orange physio' walk last November!

From my Orange physio’ walk last November!

Hi, I’m not usually hanging out on my doorstep with sweets on offer (although sometimes my neighbours get given surplus home-grown beans or strawberries 🙂 ). The fancy dress comes and goes – I am a fan of silliness and laughing. 😉 …..

I’m a Tai Chi student, an online advocate and I yearn to paint again. I’m learning Kung Fu even though I’m disabled (thanks to my fabulous teacher) and I have a very active mind so my To-Do list and Give-It-A-Whirl List are pretty long and varied. I enjoy creating and I love learning. I am more determined than I thought I was but perhaps that’s because I have some really strong focuses in my life now, reasons to battle onwards. I have too many plates spinning at any given point in time and that is because I don’t like it any other way! Without plates spinning in my life I feel like I’m missing a trick somewhere, that I’m not being all of the ‘me’ that I can be!

Life is for living, and giving, and sharing, and loving, and learning, and being and sooo much more. I also have oodles of inner strength as it turns out, which is helpful! I love laughing. I love pretty much everything and everyone most of the time. The world is pretty awesome, and there’s good everywhere when we get used to looking for it. One of the best things in my life is tea! 😉 My boyfriend (aka Magic Dude) fortunately takes all of my facets in his stride. His laid-back attitude, big heart and sense of humour serve him well. I also talk a lot. (See how awesome Magic Dude is for coping with me? 😉 ).

The disability that I have is CRPS. That’s a ludicrously high-level pain condition called Complex Regional Pain Syndrome. It has spread through my body during the 14+ years I’ve had it. But it’s a multi-systemic condition – not just a pain condition. Which means that I also have a dysfunctional autonomic nervous system (automatic processes in my body are not working properly, like heart-rate, breathing, digestion, circulation), a compromised auto-immune system, a wonky (medical jargon there 😉 ) central nervous system (I sometimes get tremors and twitches, I don’t realise that bits of my body are sometimes not where I’d like them to be so I tend to spill tea down my front a lot!), and I have big problems neurologically (brain fog a-go-go) which varies (I can be incapable of understanding basic spoken words if I am emotional, stressed or burnt out, or I can write an intelligent research paper when the symptoms are less). In fact it all varies, nothing is consistently severe or gentle, all of it is changing all of the time.

November is CRPS awareness month and the awareness ribbon is orange. So I’ll be donning the bright orange coat again this month and seeing if I can meet some of the November challenges from WEGO Health’s ‘National Health Blog Post Month‘ and Mandy’s ‘A Day in my Life Photo Challenge‘. Let’s have some fun! 😀

Orange for CRPS / RSD

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.

x

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

Tai Chi physio’s, a gold medal, and being proud of our achievements

The weekend before last, on Saturday night, I went out…. *gasp*,… on my own…. *woah*,… and I spent the evening with Tai Chi-ers and kickboxers whilst sitting in…. a wine bar *ohmygoodnesswhatevernext?* and….(wait for iiiiit….)… I drank two small pots of tea…!

Dang, I sure know how to party! 😉

I can’t tell you how wonderful it is to meet people who take my disability in their stride. It’s not something that instantly makes sense as my disability is not apparent to the casual observer, but I’ve found that my teacher and classmates now spot when something’s not right. They clock my slackened facial muscles and my lack of twinkle in my eyes on a bad day. They don’t need the visual cues of me wielding my walking stick or going to sit on the floor to drink fluids to stop me from passing out. They spot it earlier than that these days. Tai Chi students in the West often begin learning it for health reasons, and as a result I have a teacher who’s used to working around health issues, and classmates with insight and understanding from their own experiences. I am not my disability, I am me, but my disability is something I have to constantly work around, so having people around who don’t bat an eyelid at continuing a conversation from floor level is pretty darn refreshing! 😀

I practice Tai Chi during my physio time when I can. Physio time also includes getting washed, dressed, fed, etc, so on bad days Tai Chi is a no-go. But with Magic Dude to make me dinner on days where I had to give up getting-food-time to be able go to a Tai Chi class for physio instead.. it’s viable. I have to make it viable because it’s crucial to my health.

I began learning it when I could no longer do my physio exercises at the gym (owing to good ole Dysautonomia tending me towards the whole throwing-up and passing-out thing!). It became my new form of physio. Instead of going to the gym twice a week to do physio exercises, I have instead been going to Tai Chi twice a week. It felt like a step down because I can no longer do any form of even sitting-down-cardio’, and that still bothers me healthwise, but if someone came along and magicked me healthy tomorrow I’d still continue with Tai Chi.

I entered the local interclub tournament last October. I’ve never been competitive with others. I always felt bad about winning anything because I didn’t want to hurt anyone’s feelings by accidentally doing better than them! I was nervous. By nature I seem to have always been apologetic, and competitions don’t come naturally to me! Living with a disability changed that somewhat, and maybe getting a bit older and a bit wiser too. I have a disability which affects every single aspect of my life, but I am still me, and when I compete it is in defiance of my condition. My motivation is not drawn from a basic competitive nature, or a wish to be the best, it is drawn from battling the CRPS. I agreed to enter a couple of tournaments because, well, why not? It turns out I’m not half bad, and every success is an in-your-face to my health! If I have a care assistant to drive me and look after me before and after (i.e. Magic Dude on his days off), then spending 4 minutes of physio time doing some Tai Chi in shiny pyjamas is actually viable!

Before the shiny pyjamas!

Before the shiny pyjamas!

I approach the Tai Chi the same way that I approached the studying… yes, I am disabled, I am limited and restricted, but I’m not going to let that stop me from seeing how far I can get. I have to approach things differently than I would if I was healthy. I can’t be active for long, and then I have to rest for hours to bring the pain and other symptoms back down again. Everything I do has to be flexibly based. The physio is crucial to my pain management however, so why not spend some physio time seeing what I can achieve? I have to live on the sofa with a blanket and a hot water bottle the majority of the time, but why should that stop me? When I can physio it’s good to do something useful but, if I can occasionally get to do something I actually enjoy then whooop!

To try to get me to realise that I’m not half bad at Tai Chi, my teacher had me enter a National tournament. It was two weekends ago. Magic Dude drove us all to the venue, and got me hot water bottles and drinks from the canteen there to keep me going. I was in the ladies beginners class. As far as I’m aware my competitors were able-bodied.

I won.

Ohmygosh, I won!

My teacher’s response was kinda along the ‘I told you so’ line! Awww

One of the few pic's that came out in the low lighting so of course it would be one where I'm facing the other way and have got my arms up like a zombie, hehe

One of the few pic’s that came out in the low lighting so of course it would be one where I’m facing the other way and have got my arms up like a zombie!

The dysautonomia kicked in just before I had to perform. The 5-6 minutes I was prepared for turned out to be a mere 4 minutes on the day, which meant having to speed things up and hit the right time marker without any practice. Eek! Fight or flight decided it was time to increase the heart rate, which (in me) results in light-headedness, dumbass brain, and all my limbs get shaky. I find that performance nerves are minimal owing to my need to focus on my condition, but the fight or flight response more than makes up for that! I went wrong and had to blag it into the correct move. I wobbled on one leg so I made sure I took my time so that I didn’t wobble on the other leg. I was way worse than I usually am in class. But I won! *glee* Take that CRPS and Dysautonomia… mwoohaaahaaahaaa!

That went on a note and into my jar of joy!

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013

I juuuust about got myself mostly functioning by a week later to be able to join my Tai Chi teacher, the kickboxing teacher, and students of both disciplines in the nice-cup-of-tea (wine) bar. And though I couldn’t quite accept the “And here she is.. our Tai Chi champion” (every time they said “champion” I interjected “beginner” and then got told off for doing so! Self-deprecation is something I’m really good at!) I am actually really proud of myself. For going out on a limb and giving it a whirl. For doing it despite my health. In fact for doing it because of my health (both to help it and to stick my fingers up at my conditions)!

When I started writing this it was two days since the tea (wine) bar gathering. My pain levels were not as bad as I would have expected, even more surprising as I was on a really unhelpful chair regarding legs pain. I think that the happy dopamine effect of being out with real-live-3D people was doing wonders at combating the usually inevitable pain levels! But two days later and I was sat here with my breakfast and in my head was just one event from that evening. That of a kickboxer turning to their teacher and saying “Oh, are there Tai Chi-ers here as well as kickboxers, then?”. Which is a perfectly acceptable question. The problem was that in my obviously sober state I registered the tone of voice (kinda ‘ewwww’) and the facial expression to match.

I’ve worked so so hard to just get through each day with my health the way it is. I’ve had to downgrade my physio activity owing to health deterioration. I was fortunate to find a physio alternative which I love, which I’m not half bad at, and which is now setting me on a path of physio in-your-face-CRPS. I’m totally stoked. I don’t cap my potential. It’s called potential for a reason – it is unknown. So I aim high and see what happens. I’m used to being dismissed by some of the kickboxers, they often have no interest in Tai Chi and that’s fair enough. But the ‘ewwww’ face and tone of voice as the eyes flicked over to the two Tai Chi students really struck a chord. I did not let it bug me at the time. So why did it bug me two days later?

At the time I was high on dopamine and enjoying conversations with actual real in-the-flesh people who, as it turned out, I have a lot in common with regarding our values and approach to life, (not to mention meeting a fellow Chai tea drinker).

(Hehe, I’ve just got to pause and realise what I just said… about students of Tai Chi drinking Chai Tea! *ka-snort* I’m so easily amused)!

But for some reason the disdain stuck in my memory and it didn’t feel nice at all. It’s not youth (a far younger kickboxer there was not only very respectful about Tai Chi but had declared earlier that he thinks Tai Chi is really hard), it is more about a lack of understanding and of basic respect. I’ve met experienced kickboxers who have no interest in Tai Chi whatsoever but they nonetheless have a great respect for it, which is really helpful to me for feeling that I still have some sort of value in what I do. Perhaps the ‘ewwww’ person will learn to be respectful, or maybe they won’t. It shouldn’t bother me either way. But it does. And when I cut to the meat of it… it bothers me because I have achieved so much for someone so ill, that I rarely get to go out and see people, that I never thought I’d ever win anything let alone in a sport, that I am aiming for the stars knowing full well that they’re too far away and I don’t have a spacesuit or a long enough ladder. It bothers me because for the first time in many years of ill health I feel like I’m someone in my own right even to some able-bodied people. How daft is that? I’m used to meeting wonderful people who also have conditions they’re dealing with, but I’m not used to healthy people getting close or caring. My Local Friend, who met me since I became disabled but still became my friend anyway, is an exception to what I was beginning to think was a pretty strong ‘rule’ of disabled life. (Big shout out also to all my friends who knew me before I was disabled and yet have weathered the changes and are still my wonderful, beautiful friends now, love you so much, xxx).

Who cares what other people think? Right? We should be the best we can and be proud of everything we achieve. The reason that I am bothered by their attitude is because it taps into my own fears. I am afraid of losing what I have found. Of being dismissed and sidelined again. Of rediscovering that magical form of invisibility that disability can endow.

The answer, of course, is to keep focused on what I love doing. I won’t lose Tai Chi. I might lose the ability to compete in tournaments. I might find that when pitted against more experienced competitors that my natural ability just doesn’t cut it any more against their physical health and training. But I didn’t start learning Tai Chi to do tournaments. I started it to help keep my body from losing function, what I’ve got out of it is so much more. More from the perspective of my health, and more from the perspective of my heart. Don’t get me wrong, I’m still aiming for the stars, and if someone’s got a ladder to lend me and if a spacesuit shows up on Ebay with biddings starting at 99p I’ll be there! I’ve just had a wobble. We all do. But if we hang onto that core of who we are and what we love then who knows where it will take us?

And no matter what happens, I will know that I did what I wanted to do, I followed my dreams as far as I could. Who’d have thought that a chronically ill girl like me with multiple conditions and full-body intractable pain could be someone in sport? It turns out that even when managing endless symptoms throughout each day, once in a while I can manage it well enough to spend 4 or 5 minutes with the able-bodied Tai Chi-ers. That’s surely something to be proud of, no matter what other people think. I wonder if I can be someone at a higher level than beginners? Whatever happens I’m not giving up, and I’ll always have fond memories and tangible reminders…

A gold medal for my physio work :-D

Ladies beginners class, national comp, gold 😀

x

My CRPS journey to happiness

Hello! Yes, it’s me, please don’t fall over in shock! I know I’ve been awol for a while whilst getting to grips with the final dissertation for my studies. Today is allocated to studying, well, in my functional moments anyway! However, I’m in a lot of pain from how I’ve been sitting so I’ve moved to the sofa (complete with duvet and hot water bottle, of course) and rather than faff about online doing unproductive things whilst I wait for the pain levels to calm down a bit, I decided to pop in here and wish you all…. (wait foooor iiiiiit…)….. a very happy first ever “International Happiness Day”!

Guffaw!

Seeing as my brain is full of study and it’s a more painy day than usual I don’t relish the thought of going out for a physio walk today and getting told to be happy, when I’m concentrating on moving through the pain! But I do like the idea of formulating some replies that would subtly inform whilst making me laugh hilariously at their surprise at my daring to be so jokey about such a serious subject as my health! (Twisted sense of humour, much?) 😉

I remember a horrific physio walk, back in my early physio days. The physio experience got soooo much better because I persevered with it, but this was back when I was desperately trying to slowly make it around the (very small) block without bursting into tears. Then the ruddy postman cheerfully suggested to me that I should “cheer up love, it may never happen!” as he passed me by. Okay, so the thought of punching him in the face did occur to me in my imagination, but in reality I just feigned a smile and promptly burst into tears the moment he’d turned away.

We all know those days. But I’ve found that happiness creeps into my life in new ways. Admittedly I look for it because I want to be happy. I’ve spent time thinking about what truly makes me happy, and it really is the simple things that make me both happy and kinda peaceful on the inside, too.

I smile when the sun shines. I really enjoy a nice cup of tea (oh okay, many many cups of tea!). I adore my friends near and far, (some of my closest friends are beautiful souls I met through online CRPS groups, and even lovelier is that they are beginning to meet those of my closest friends who know me from the 3D world and they are becoming friends with each other, too. *glee*).

I loved hearing the first Spring birdsong a while ago (Spriiiing is on the way… waaarmth is on the way! Okay, so we’ve had more snow since then but I didn’t foresee that at the time so I still smiled at the Spring songstrel)!

I set myself little goals because that way I am not endlessly fighting to get to a far-off distant goal. Instead I achieve little goals along the way to the big goal, each of  which gives me a sense of achievement and makes me smile. It brings a feeling of capability and self-worth with it, too. Often my big goals are questionable as to whether I can actually achieve them, but my view is that I don’t know if I don’t try, and if I achieve lots of little goals along the way then every bit is an achievement to be proud of, however far I do or don’t get in the broader picture.

For example… I’d love to do a PhD, so I’m battling my health to get my masters degree. I don’t really expect to get a PhD, but I expect to keep looking into the possibilities and seeing if there’s a format that could work for me. Never say never, right?!

Another example… I’d love to represent my country doing Tai Chi at the Paralympics, but Tai Chi isn’t a part of the Paralympics and won’t be any time in the foreseeable future. (Yep, I even emailed the International Paralympic Committee to ask! Well, if you don’t ask, you don’t get, right?! tee hee). I’m not saying I’m that good, but I do tend to aim high these days just to see what is possible. I’m still working on improving my Tai Chi as much as I can for as long as I can. I see it as something which can help me through my life into my grey-haired years (which, between you and me, I appear to be embarking upon already but they’re not too noticeable, yet, shhhhh 😉 ). One of the keys with CRPS is the balance between activity and rest, for me Tai Chi is a perfect activity challenge. (Here’s another secret… I’m even entering a big Tai Chi tournament! I figured, “why not?” It’s ‘only’ a beginners classification. I’d love to whoop some able-bodied asses with my slow-mo’ disabled styleeee, hehehe)!

I also wanted to do something to help my fellow CRPS patients, hence this blog came into existence. But with my professional(ish – my health stopped me from working after the psych’ degree) background training I wanted to do some research that would help in a more professional capacity. It’s all very well being an ‘expert patient’, but I figured a paper from a ‘researcher’ has more weight with the multi-disciplinary professionals involved, (not much more weight, but a bit, hey?). So I’ve spent my final masters module doing just that. Goodness knows if I’ll get these pain levels down enough to hit the dissertation deadline and pass, but after that I’ll have no deadline, and I will have the time to spend on writing a paper to share.

All this stuff, broken down into little chunks, little achievements, little moments of joy, (yes I’m still adding to my Jar of Joy!), moments of happiness both the big (a bronze medal at a little local interclub tournament last November. I know I didn’t write a post about it, I should have but I was feeling shy about it at the time. I think the reality has sunk in a bit more, now!) and the small (the sun shining in through the window whilst I sip a lovely cup of tea). I have soooo much happiness these days, I know it sounds weird but I can’t really explain it other than to say that my wants and appreciations in life have changed. Not that they’ve been downgraded, although it used to feel that way during the earlier stages of transformation, it’s actually more that I’ve recaptured my childlike appreciation of the things that we so easily grow to miss as busy responsible adults. Perhaps that’s why I like hanging out with the nieces so much! They’re about the same age as I am in my heart these days 😉

Fun. Silliness. Joy. Happiness. These are the ways I live these days. Despite (and quite possibly because) of the massive relationship losses that so many of us experience. Achieving small goals is valuable for the associated personal progression (I love learning 😀 ). I know I have pain and additional neurological, autonomic- and central nervous system issues with resulting physical and neurological difficulties, but I prefer to see them as a challenge! I relish a challenge these days! I never thought of myself as competitive, I want everyone to do well and I like to encourage others to progress, to become, to *be*, if that is what they want to do. But it turns out that there is a type of competitiveness I hadn’t taken into account before, and that is my competitiveness with myself! That is, that I always want to push harder, to be the best that I can be at something, but still within realistic boundaries applied by my health. After all, pushing too hard only results in going backwards healthwise and having to cover the same ground again to get back to the standard I was at before. That’s fine, I’m in no hurry. I am not competing with anyone else. I am on my own path and I’ll take it at a pace that is most productive for me. I’m fine with that, it’s worked for me so far.

It’s always exciting looking at how far I’ve come and gleefully dream up new ludicrous ‘big’ goals to make me grin! Half the fun is inventing a new goal and fully expecting that I can only get so far but that I’ll be so proud of myself for what I manage,… and then surpassing my own expectations. That’s fantastic! I do not expect to achieve my goals, but I expect to work towards them and achieve stuff along the way! Gosh I’m a paradoxical chick, huh?! 😀

Elle and the Auto Gnome, Tree of my CRPS experience

Above is a tree of my journey that I created a while ago. I began it with my health changes as the roots and trunk – the beginning of this particular tack of my journey. Then the experience got less concentrated, more diverse. It branched out into many things. All inter-related, many overlapping in timescale, so there’s no pattern to the branches, just a lot of words, feelings, experiences and more that led me to starting this blog. Then I found a whole new chapter of my journey lay before me. I look forward to living it, I’m intrigued to see what happens next in the story!

Lotsa love and happiness from me,

x

A jar of joy!

I’ve seen a suggestion flitting about on the social networks about noting down the good things in a slightly different way than we might usually think of, and I think it’s a great idea so I decided that I would follow the suggestion myself.

The suggestion begins with you re-using an old jar by giving it a new purpose for 2013….

I have a jam jar that I attempted my first ever glass painting on years ago, so it’s really messily done, but it’s still with me so rather than it being a jar-of-random-stuff-coz-I-don’t-know-where-else-to-put-them it has been reassigned to the job of my 2013 Jar of Joys! Of course, we could use any container we like, I think it adds a little something more if the container is pretty or meaningful in some way although, on the other hand, a fresh start with something new is also very meaningful and adds to the cause, too.

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013

Then….

The idea is that whenever a good thing happens in 2013 we write a note of it (little bits of different coloured or patterned paper would be really pretty) and pop the notes into the jar. At the end of 2013 we have a jar of reminders of all the good things that it’s so easy to forget or not give it the importance it deserves in our memory. For those of us living with health conditions, or any other challenging life anomaly, this could be really beneficial to our satisfaction at the end of 2013 and looking ahead to 2014. Many of us have experienced the mixed emotions at the end of one dastardly tough year and trying to feel like it was worth it and that the new year will somehow be better. It is easy to remember the hardships, especially when they’re reinforced in our memories by occurring daily, so it’s even more important to remind ourselves of the little joys that so easily get lost along the way, x

From an ill health perspective ‘good things’ would mean slightly different things than perhaps a rock band roadie or NASA scientist might imagine 😉 If we manage a physio’ session with less pain, clean the bathroom and still have enough juice left to make ourselves a congratulatory cup of tea, if a good friend comes to visit and lighten our day, if we have a meal with family, or get to visit a library or museum  or see a film or play, If we dress ourselves without as much pain as usual, or put on an item of clothing that we couldn’t put on ourselves for a long time, any of these things and more are experiences and achievements to allow ourselves a moment smiling and a warmth in our hearts, and if they make you grin then they deserve to get jotted down and added to the jar. Think about what will make you smile when you look at them again at the end of the year, and those are the ones to note down.

I’ve started mine.So far there is note in there about one of my best buds coming round on New Year’s Eve to natter, make christmas Lego and pull crackers 🙂 And a note about Magic Dude taking me to the cinema on a date. (Yes, we live in the same house, but dates are great ways to treat yourselves to some couple time instead of worrying about bills or who’s going to do the dishes)! Oh yes, and one about sculpting in the snow with the nieces, too 🙂

I kept a couple of party hats that came out of christmas crackers which I’m currently using as my note paper for the jar!

christmas hats for the jar of joy

I have a tendency to keep things, I’m a sentimental 😉 So last year I kept scraps of memories in the form of things like cinema tickets and birthday cards, but this Jar of Joys allows me to note down moments that warmed my heart and made me smile as well. These are the moments that lift us, and make us feel all warm on the inside. So I reckon collecting them is no bad thing, and getting to read them during the next tricky transition from 2013 to 2014 seems ideal to me. I shall keep jotting down joys and see what I end up with at the end of the year 😀

x