Yes I still exist (honest guv’)

Imagine my surprise when I realised I hadn’t written a blog post since the end of last year! Lawks! I’ve been writing drafts when I can but poor ole Betsy the laptop has usually (always) got too many browser tabs open to cope that well! How is it possible that time passes by so quickly these days?!

I have been posting on the Facebook page though of course. Just never seemed to get to complete a blog post. The main reason has been lack of Brain. It pops in now and again but it doesn’t hang around as long as it used to. So I realise I need to change my way of writing to accommodate this change because mostly it’s resulted in me not writing. And as writing has become a love of mine I have been getting twitchy!

As I’m in the UK I was initially dealing with the tail-end of the continuing coldness through the Winter. Always a toughie getting through to the Spring, eh? Pain levels are up, natural vitamin D intake is down, relentlessness is the name of the game and by the end of Winter (well deserving of it’s capital W) we are begging and pleading the weather to bring Spring to us so that we can start recovering.

Winter was actually pretty mild here, but that just means that I wasn’t at quite such an extreme of my wits end, y’know? Winter is *always* hard. Springtime rocks!

I’ve been having some more health issues and I’ll write more about that in due course, but initially it appeared like it was a crazy-arsed allergic reaction to anything / nothing / everything which lasted all the time / 4 random minutes at a time / stopped for a few hours then came back with a vengeance. It was pretty weird. And yes it became apparent that it was so bizarre that it was reminiscent of my respiration issues a few years ago, so I knew it was a systemic overload which had to be stopped. Hence.. more on that in a separate post.

In March I said “yes” to a concert because I figured how could I not? I mean, it was in Winchester Cathedral, maaan! Beautiful! I didn’t realise just how cold it would get in there or that I should’ve dressed for the outdoors to better manage my pain levels, but fortunately they had some doghouse sized radiators to cuddle up to! So yeah, I went and saw Anathema perform acoustically in a gorgeous cathedral. It was stunning. Truly fabulous.

There are a few cathedrals around the UK who raise some of their funds through events like this so if you get the chance… dress warm, take a cushion if you need one, and because it’s acoustic it’s not like you’re gonna get your head blown off by mega-speakers so the volume is more compatible with sensitive ears (though if you’re unsure I can recommend the noise-reduction earplugs as they reduce the volume without muffling the sound).

Winchester Cathedral acoustic concert, Anathema

How stunning is this?!

 

I’ve also had the wonderful experience of two fellow CRPSers travelling from their home countries to come and visit me in real-live-3D, wow! That will also be a separate post because it was so fabulous 😀

Two of my friends got married and Magic Dude and I attended the sci-fi wedding in Star Wars fancy dress. Which I made with my own fair hands, I might add! My sewing machine and I are no longer nemeses, we have made friends and now I wish I had more time during which I am more functional to make some clothes. I now have a new creative project with the sewing machine which I’ll post about soon, too.

And for anyone wondering… I am dressed as Jareal (after the make-up has come off and been re-applied a gazillion times X-) ) who I found out about by researching the comic characters, and Magic Dude is dressed as Plo Koon who was briefly in one of the prequels (very briefly – when asked about his choice of wedding costume he said something like “you see him in one of the spaceships for a moment and then he dies”).

And of course that same month we had the UK government election. Voters were at a loss who to opt for if they even voted at all, many didn’t. The ‘majority’ on our ‘first past the post’ system was a shock. The majority means the party who got the most votes, even though the people who voted for them are actually in the minority of the voting population. Even weirder, our system is set up for the main parties and to keep smaller parties at bay. So this means that votes for the Conservatives adds up to more MPs from their party than exactly the same number of votes would get for another party. I know. Don’t ask. It’s so out of date. Anyway the shock factor was massive. No-one expected the same government to be voted in again. Not even the government peeps themselves! Many of my disabled friends were in tears at the news – welfare cuts have been horrific here with the poorest and most vulnerable getting hit multiple times through different cuts. The new welfare ‘assessment’ process is causing mental health issues to the extent that there have been suicides as a result. Before getting re-elected the government promised a further £12billion welfare cuts so you can see why so many people were in tears. I seemed to last a while in shock until Magic Dude’s Dad said something blinkered and I burst into sobbing and couldn’t stop for some time. The UN is now running a second investigation into the state of human rights in the UK to expand on their earlier investigative report.

So yeah, now I’m an activist. As it turns out. Not just a health activist any more, but an activist for the poor and vulnerable generally. I can’t do much in my state of ill-health but there are petitions I can sign, ideas I can bounce, people I can help. Being chronically ill isn’t going to stop me from caring about others and doing what I can to help reduce the additional shitstorms coming their way. Takes up quite a bit of Brain Time of course, another reason I have been so absent from the blogging as usually May is the time of year when I would begin to manage to write a bit more.

So anyway that’s enough for the body to have to handle whilst still working through the months slowly recovering from Winter, right?

But I’ve also been doing my usual full-on overdoing it for one day in April and one day in June at Tai Chi tournaments. As you know it takes months for me to recover from Winter and weeks to recover from each tournament, so the overlap of tournament with Not Recovered From Winter Yet is substantial. But I do it because I am so limited and restricted every day that pushing myself for two days per year feels worth it because although the aftermath is horrific the memories last far longer. 🙂

The April tournament this year was not the usual nationals in Oxford but my first ever Europeans. (The Europeans were originally going to be held in Latvia and so this was a last minute alternative and much more viable for me to get to).

I performed the Sun Style 73 form which is not a flowery style so I have to show my understanding and skill levels in different subtle ways, so that was my challenge. I also performed the 42 form (a tournament form incorporating 5 different styles of Tai Chi) so performing two different things at one tournament was also my challenge. I was a bit awed that my teacher had put me in the advanced/open section whilst I am still officially at intermediate level, I guess that was also my challenge. Hey wait a minute? How many challenges am I fool enough to take on at once here?!

I was amazed that I ended up with a silver for my 42 form (with two lovely ladies from the Netherlands either side of me with gold and bronze) and a good score for my first ever tournament performance of Sun. But more fabulous was the fact that this was the first time that I’d been part of a larger team. We’ve only had a maximum of 3 of us there before, but this time we had a whole gaggle of us. Some in beginner, some in intermediate and some in the over 55s. Everybody in the team was supportive and encouraging to each other, and lots of fellow Tai Chi-ers there were positive towards us too. In fact I was so pleased to find out that my teacher had been told that her team were notable for their friendliness and positive attitudes. What a fabulous endorsement for her first event managing a larger team. 😀

Tai Chi, 2015, European silver

The next day I met up with my lovely teammate who also has chronic pain and was staying in the same hotel. We have travelled our Tai Chi paths alongside each other these past four-ish years and we have cheered on each other’s progression with such joy because it’s one heck of an achievement in the face of our respective health issues. I hobbled from bed to lift, and from lift to comfy chair in the hotel lobby. I sat in one chair with my feet up on a second, had my hot water bottle under my legs, blanket over the top, painkillers in my bag and he had been his usual sweetheart self and got the coffees before I got there. Several hours later we were still there nattering away. Movement was not very viable for either of us and it was great to be company for each other through the pain levels.

My lovely Magic Dude turned up later with the wheelchair so that he could get me out of the hotel room the following day. We went into Oxford town and I went camera crazy as I always do when I actually get out somewhere! It was really lovely to get to see the city this year. That wheelchair makes such a difference! 😀

Oxford, bicycles.jpg

Pictures obviously included bicycles (and many many grotesques and gargoyles on the old buildings)….

Oxford, Bodleian library

…the inspiration for Hogwarts main school hall in the films (Bodleian Library)…

Oxford, street pianist

…and a pianist on wheels who was super-prepared for any sudden change in the weather! Totally normal, nuthin to see here! (Actually his piano playing was gorgeous).

The weeks between the Europeans and the June Nationals whizzed by and I was not in great shape healthwise (starting the tournament day with the screaming ouchies in my left leg at a mean 8.5/10, boo!) but I managed to get the pain levels down a bit to perform in Sun Style at my intermediate level and got a good score considering I was racing through the 5-6 minute form to complete it within the required 4 minutes *and* I added in an extra move by accident, too! X-) Being able to get a decent score with Sun style was my aim. And extra wonderful was that my teammate (yes, that same friend) got the exact same score for his multiple-style 42 form and so we ended up on the podium together with joint silver, wow! I can’t tell you how awesome it felt to be standing there with my friend sharing that achievement after coming such a long way together in our journey to help our health situations. There really are no words to describe the singing glee in the soul but it was flipping wonderful! He’s put in phenomenal work to get where he is today using both physical and psychological tools to find the best pathway round the health stuff. If anyone deserved to be standing on that podium it was him, and I found myself standing on the same podium with him which felt so perfect that I wasn’t on a different podium or even a different level – we were on there together. Go Team!

I also entered the advanced/open section with the 42 form, managed to fluff it up in amazing style, made it look like it was meant to be that short honest guv’, and ended my performance somewhat (a lot) earlier than I should have, har! A good score considering the extent of my very silly error, and some wonderfully positive words from head judge Faye Yip telling me to come back next year because I have “potential”, yay!

Oh and no wonder my body has been so screwed because the classes that I use for physio’ include adaptive Kung Fu in which I have got my red sash and first level brown sash this year too. I’m not entirely sure how I managed to achieve those! Although the brown grading was during the heatwave and my legs were glad of it even if my nervous system wasn’t! My body needs more tiiiiiime, man!

And yet I posted on my personal Fbk wall the other day that it would be nice not to have to deal with people telling me that I am “lucky” to “not have to work” / “get to stay at home all day” because I get those sort of comments as a result of how people see me when I am out of the house i.e. looking ‘normal’ because I am doing my physio’. If only they could see me the rest of the day eh? Needing a wee and not being able to get to the loo in the adjacent room, wanting a cuppa and having to wait several hours til Magic Dude gets home and can make me one. Ah well, people just don’t get it eh?! 😛

And then we were getting the house ready to put up for sale. It sold at the end of July and we’ve been searching for our new home ever since. Not sure how much longer our buyers will hang in there but if they pull out it’ll sell straight away again. The market here at the moment for the main price bracket of £120-210k (your basic 2-3 bed homes with the usual squished space that we have in UK houses) is basically at about 15 buyers per house. Apparently we wouldn’t have the same extent of trouble if we had £210-250k. Oh if only eh?! Har, dream on!

We need some more space y’see. I moved into his one bedroom place and so nearly everything I own has been in the loft for the last 5 years. If one of us wants to do something creative there’s no space to set it up and leave it so most of my physio’ time is taken up with getting everything out and setting it up and then putting it all away again afterwards which doesn’t leave much time for whatever the activity in the middle was supposed to be (I want to get painting again). So yes we need a little more space but also….an enclosed garden. Currently we only have an open outdoor space between the house and the pavement out the front. Apart from how nice it would be to have some private space the main reason is (dahn-da-da-daaaaah…) we wanna get a dog! But the housing market is slowing down for chrimble so I’m expecting our buyers to pull out sometime soonish and that we’ll be re-selling in January when potential new homes start to show up in greater numbers.

So with fewer house viewings taking up my physio’s I finally have some time again, wheeee! Except for how that creative project I mentioned will now take over any available physio’ time. I look forward to sharing that when all the material has arrived. 🙂

Anyway, now you know I’m still here.

Phew! That was a heck of a catch-up!

Loves xx

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Totally Tubular (Dumbarse) Tuesday!

I just found this draft from last winter and decided to finish it off and share it.
As you’ll see… you’re not alone with the Silly Brain stuff, but more importantly this post is about change being the only certainty with these conditions and crucially.. change can go either way.

So Keep On Keeping On is definitely the way to go. Sometimes we can be surprised by some good changes. 😀

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Last winter:

I started the day like a boss dumbarse.

It seemed okay at first: Magic Dude got up for work at Stupid o’Clock and I actually went back to sleep. Sleep! Awesome!

When I awoke I was lying there thinking I should get up when there was a knock at the door. I made it downstairs and stared bleary-eyed and incomprehensibly at the woman on the doorstep. She’d come to read the electric meter. Fair enough. I then went to look at the time… Ohgoodgrief it’s 10am – 30 minutes to get ready and leave for Tai Chi, eeeeek!

Yes, it’s Totally Tubular Tuesday! Which means that I have two physio’s today, but that they’re cool physio’s that I’m super pleased to get to do – Tai Chi and adaptive Kung Fu.

So I managed to throw clothes on and and shove my contact lenses in. Ruuuuush!

Then I Iooked at the time again.

It was 9am.

Dumbarse!

So I carried on getting ready at a more leisurely pace. Today is the only dry day for a while so I had to hang some washing out. This is the worst day I could possibly have to do it on as I have both physio’s taken up with my classes, so it means that hanging washing is extra activity which is baaad news for the pain levels. And as it’s winter here the pain levels are already dreadful as the cold takes hold.

But I did it. Hurrah! Washing hung outside. Breakfast eaten. Multiple tablets and supplements taken. Fluids imbibed. I even wrote christmas cards for my Tai Chi and Kung Fu classmates.

I got to Tai Chi on time. Or so I thought. I walked in and everyone had started already. I hate being late for anything. I can’t do the Chi Gung any more as this med’ doesn’t stabilise my ANS as well so I get too faint to Tai Chi if I do the Chi Gung. So I plonked myself down and did some stretches through the standing still bit, then I joined in for some Chi Gung arm movements whilst sitting down to reduce faintyness.

Then we all performed the Yang style 24 form together with the official music. I was trying to include the corrections I’ve been learning but my brain is always off after a bit of Chi Gung so it’s guaranteed to be sub-standard the first time!

Then I hurriedly swigged some weak tea from my flask and poured it down my tee-shirt. In front of my teacher. Awesome.

The rest of the lesson was dedicated to brushing up the Sun style 73 performance. Apparently I have claw hands today. *sigh* Blummin’ dystonia! My teacher was showing me how to smooth out one particular move. The correction is reeeaaally straight forward. I know it is. And yet I found that without the move beforehand I could not work out how to do even the basics of the move we were working on. That’s not too unusual for me, but then I found myself watching her show me the move several times in a row and I realised that I did not recognise the move at aaaall. I had no knowledge of what she was doing. I knew I did really, somewhere in my brain, but it’s the first time I’ve not been able to access something like that even when it’s happening in front of me. It was not an enjoyable CRPS Brain moment. 😦

you're always on way way to someplace more

But you know what? This is just part of that thing called Shit That Happens. So all I can do is acknowledge the brain anomaly and move on. No need to dwell on these things as it will make me sad. Move on. I’ll know the move another day.

So I practiced what I could so that I got some activity for my body during my allocated physio’/Do-Stuff time.

Then I got my christmas cards out and found that I’d brought some of the Tai Chi cards and some of the Kung Fu cards to the Tai Chi class. Ugh! Stoopid brain. It probably looked like I’d forgotten to write cards for some people. *sigh* Hopefully they know me better than that, though. 🙂

Then… gosh I’m so classy…I choked on my lemon barley water and coughed a lot, bringing my ‘happy christmas’ convos to an abrupt end. Waving goodbye to people I got outside and proceeded to do the whole whooping cough thing whilst bringing up scrummy mucus into my mouth. Yum.

This is all fairly typical for a Tuesday, I really struggle with the two classes in one day, but they are both important to me and I do them during my allocated physio’ time so they are not extra. (And usually there wouldn’t be washing to hang up).

So, off home for 6 hours of attempted recuperation with fluids, hot water bottle, cushions to prop me up, blanket etc, then on go the compression stockings again and back to the martial arts gym. Double checking the christmas cards before I left.

When I arrived home from Tai Chi I found that the washing had been rained on and was now sopping wet again. All in-keeping with the theme of the day I guess!

And yes I still went to my adaptive kung fu lesson. I made it through despite nearly passing out whilst standing still and holding a target up for someone else to practice kicks past. Standing still is blood-pooling-tastic eh?!

It may look like I'm doing nothing but

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Today:

Now that my teacher is back from the Tai Chi World Cup in Taiwan and has finished winning gold and silver medals for a while she has got stuck into running a new class which started today. And yes, I was there for the first of the new class which is all about strength and conditioning.

As any pain patients know – pacing is the key to a lower pain baseline, and as any hypermobile patients know – pacing is jolly useful but strengthening muscles to help reduce the bendiness is pretty awesomely handy.

So that’s what I’m working on: strength and conditioning the parts of my body that I a) need to improve for Tai Chi tournament purposes, b) which will reduce various hypermobility issues and c) which is all done within my daily paced physio’ time so that I can do so without exacerbating my pain baseline.

spoons

I wrote a while ago about how the med’ I’m taking to help stabilise my Autonomic Nervous System (ANS) issues somehow remained pretty crap until this Spring despite starting it in the Autumn before. I don’t know why that is but I certainly wasn’t complaining when I could not only join in with the Qi Gung in class again but I could even shut my eyes without immediately keeling over. Wow! What an improvement! The dystonia reduced in severity too. It’s always worth talking to your doc’ about any tweaks or alternatives because tiny changes in med’s can result in substantial improvements in our uber-sensitive bodies.

This year I’ve worked at the Tai Chi and covered some of the lessons as substitute teacher that I would usually attend as a student as part of my physio’ anyway. (A physio’ spent teaching gives me a different insight into my Tai Chi and is a whole other learning curve. And definitely a challenge)! I’ve also worked at the adaptive Kung Fu, trying to adapt as little as possible as it’s within my daily physio’ remit but there’s always odd little aspects that I need to be careful about (e.g. when my heart goes dysrhythmic, when I get faint and working round issues such as my degenerative hip joints).

But as you can see from my draft above that I wrote last Winter… I am doing better than I was last year in some rather important aspects.

set backs and come backs

Admittedly my proprioception still goes awol and my teacher has seen me pour drink down my top many times. Even as recently as Thursday in fact! Ah well. I still have all the same issues with my health, and many are worse because that’s just the way it is, but that doesn’t mean that I can’t make improvements in important ways. And it certainly shows that my determination to keep at the physio’ pacing keeps paying off endlessly.

So finding my draft from last Winter and re-reading it was a pretty good experience for me. If you journal you’re probably telling me through your computer screen that I should try journalling more often eh?! 🙂

My determined physio-ing and my med’s tweak have helped me to build up to working on stabilising the most hypermobile areas in my body. It would be awesome to experience less subluxation of my shoulders and sacrum, and if I can do the strength and conditioning exercises as a tougher physio’ each week then my ANS should be more relaxed about the lesser activity the rest of the week. Or at least that’s what I’m hoping based on my past experience.

I’ll keep on keeping on anyway. Winter is not quite setting in here yet, the changes in weather are wreaking havoc with us Painies, and when Winter finally sets in our pain levels will rocket even more. So I need to be on top of my physio’ schedule to make it through to Spring with as few setbacks as possible. I don’t know where I’m headed so it’s all about doing the best I can for my health. I guess I’ll just follow whatever path turns up under my feet. And if I go backwards that’s all par for the course, it’s just setting me up for another comeback, right?

Feeling determined!

look at how far you've come, rather than how far there is to go

x

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One of those weirdly surreal days

How do you react to being told that one of the UK’s top Tai Chi teams want you to join them *and* to compete as part of the team at the European Tai Chi Championships in Latvia in only a couple of months time?

I mean really? Whaaa?

My first emotion was one of excitement, but the shock soon set in! By the time I was halfway home my facial muscles had gone all slack, my eyes were wide in shocked disbelief and my mouth was gaping, I must have been a weird sight!

So, in my case the internal reaction seems to be.. ‘Whaa? Wooow! Really? Woah! I haven’t got my passport sorted yet!’

Quickly followed by… ‘I’ll need to take my wheelchair with me. I need the rest of the team to get their head round the reality of a Tai Chi competitor also needing a wheelchair some of the time even though they look ‘normal’ when they’re not using it. I hope they can get me a seat on the plane with plenty of leg-space. I wonder if the aeroplane people will lose the arm rests, maybe I should bungee them onto the wheelchair before they load it….’ etc etc. During which my fight or flight kicked in, because it does that over even the slightest raise in heart-rate (My fight-or-flight: “Your heart-rate has fractionally increased! Oh no, we’re all going to diiiieeeee”), and before I even reached home my autonomic flibbles meant that I also became rather nauseous. So I figured it was best to simply concentrate on careful breathing to calm my silly inner-wiring.

But the day was even more surreal than that, so instead of coming home and variously grinning and pondering my way through the afternoon, I instead had to come home and type up a potted medical history for the cardiologist who I was seeing that very afternoon.

Off to the hospital. Quick ECG as usual. Which was all fine and dandy, as usual.

The reason I’d been referred back to the cardio’s again was because my GP gave me a 24 hour ECG (called a ‘holter’ in some countries) and instead of my wiring saving the heart flippity-flappities for when I’m not all wired up and Borg-like it actually misbehaved at a time when it would be registered. But… instead of my heart going flippity-flappity it ‘paused’. For 46 seconds!

*sigh* Always something new, eh?! Ah well.

Anyway, the outcome from the appointment was that we really don’t know what my wiring is diddly-doing so I’m going to get called in to get set up with a 7-day ambulatory ECG sometime. Fortunately it should be before the European Tai Chi Championships. Yes, I checked! 😉

Just because the day is so darn weird anyway, why not do something out of the ordinary to be in-keeping with the theme?…

On my way out of the hospital I wandered past a clothes shop with ‘SALE’ in large, friendly letters ( 😉 ) and in the window was a dress that caught my eye. So I went in, tried it on, and blummin’ bought myself one. Yes, you read that right, I actually bought myself something that wasn’t ‘necessary’! It wasn’t supplements, or med’s, or compression stockings, it wasn’t even a Tai Chi seminar for extra physio’, it was a dress that I bought for myself simply because it’s pretty. Well it’s pretty *and* purple *and* paisley, so how could I resist?
dress from hospital
Though perhaps it says a lot about my life that I bought it inside a hospital! Hehe
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So, I’d been out of the house twice already that day – once to Tai Chi class (and the shocking news) and once to the hospital. But Tuesdays are called Totally Tubular Tuesdays in this house because I have two physio’ classes that day, yikes! I wasn’t sure if I’d make it to adaptive Kung Fu as well, but Wednesdays are always my rest and recovery day after my tough Tuesdays so yeah, I went anyway because I’m determined/stoopid (delete as appropriate)!
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It’s now been over a week since my teacher scored points for managing to render me speechless (not many people manage that! 😉 ). And the update is that the Championships have now been moved to the UK, so at least I don’t have a plane flight to deal with now, pheweee! That could have blown my pain right off the scale. It’s hard enough competing in the UK with my health conditions delivering their characteristic collection of aftermath problems, but at least I know what repercussions to expect from competing here.
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So I’m in ‘training’. Which actually means that when I have a Tai Chi class I practice with aims instead of ‘just’ practicing! Which I obviously need as I’ve been told that I had somehow turned one of the Chen style parts of the 42 form it into a “sexy salsa version”, oops! So yeah, plenty of work to be done whenever I can spare some physio’ time to practice! And what with the need to eat, wash etc there isn’t exactly oodles of physio’ time available to purloin, but you know I’ll do what I can, as always.
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I’ve said it before and I’ll say it again…. never, ever. ever cap your potential. Live in the moment, enjoy the shiny bits, and don’t ever assume that ill health means that we will live in a perpetual metaphorical downpour forever more. There are always moments to make us smile, however small. I do feel lucky in some ways. I certainly feel lucky to have ended up with such an awesome teacher. But I know that the grit and determination of my paced exercise over the years is down to me, and without it I would not have got to the same level of beneficial effects from that pacing today. I can safely say though that physio-ing at something I actually enjoy takes far less determination to keep at it! 😉
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Much love from the spaced-out blogger recovering from shock and cardiology! 😉
x
UPDATE:
The European Championships will now be held in the UK instead of Latvia. The change in venue has also meant a change in date as it will now be held in April 2015. Which means more time to get over the shock and to get some training in during my physio’s!
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Tai Chi and adaptive Kung Fu catch-up

During the time that I was away from the blog creating the FAQ I still kept up with my physio’ sessions of course. I have to as the pain still needs managing no matter what else is happening. In fact that has to come first for me to be able to do anything else anyway. So I kept up with the Tai Chi and was training for this year’s nationals in Oxford and London.

I also kept up with the adaptive Kung Fu taught by the same fabulously supportive teacher.

So I’ve had a few progressions to celebrate since I last posted about these physio’ focuses.

I sourced my very own purple, (yes I’m sticking with the purple!) Tai Chi ‘silks’ and when they arrived I was so chuffed to have my own set that I wanted to take a piccy of them to show you. On the very same day though I was awarded my green sash in adaptive Kung Fu so I was pretty overwhelmingly happy and took a photo’ of the two together…

TC silks & KF green sash

Each time the Tai Chi tournaments come around there’s something new about our performances. There is always additional detail and improvements which we’ve spent the last year working on, but this was also my first year competing at intermediate level (for those who’ve been learning Tai Chi for 2-5 years). I was bowled over to win a gold for my performance at each tournament again this year, plus there was the added surprise of being awarded joint bronze at London for overall intermediate as well. So yep, I’m pretty amazed at the outcomes, especially the London one because a) I had performed the 24 form at Oxford and only started learning the 42 form 8 weeks before London, and b) I had to wait all day before it was time for me to perform… by which time I was a mess! My brain was going, my Dysautonomia was playing up, I couldn’t think straight and basically felt downright dreadful. So I decided that if I managed to get through it without making any massive errors or falling over that I’d be happy. After all, I don’t so much compete with my Tai Chi peers as with my health. If I can kick the metaphorical arses of CRPS & Dysautonomia then I’m a happy bunny! So yeah, winning in that state was one heck of a shock! Maybe I’m alright at this Tai Chi thing! 😉

I know that it would be appropriate to have a piccy of me after performing at London as I collapsed in a sweaty heap the moment it was safe to do so, drank a bottle of water in one long gulping session, shovelled down some salty peanuts and then just sat there cross-legged with my head in my hands. Funnily enough poor Magic Dude was more concerned about me than he was about documenting the state I was in, we’ll make sure he gets his priorities right next time! 😉 So here’s an alternative but not-so-interesting piccy instead, x

TC medals 2014

Of course it’s been so long now that I’ve since graded again in adaptive Kung Fu. I am now the proud, and rather gobsmacked, owner of a blue sash! 🙂

KF blue sash

None of these achievements were things I aimed to attain. It’s all been a case of trying things because I want to, let’s face it… doing a physio’ that we actually enjoy or which makes us feel good about what we’ve achieved is well worth the effort just for that, let alone all the physical good that we do it for. And yes, don’t get me started on the extended Aftermath Pain from attending the tournaments! But it’s worth it. For kicking the arse of my health conditions… it’s so worth it!

I do push myself, but I do it within the knowledge of how to work pain management activity balanced with rest and recovery. Plus I pay attention to the feedback from my body and work from the adaptive point of view to keep me from plunging into any unnecessary mega-flares. That is where the ‘adaptive’ aspect is really important. There’s no sense in comparing myself with healthy classmates, I do what I can for my body and for my inner self.

Of course mega-flares are part and parcel of competing twice a year and whenever I dare to grade, but the psychological boost I gain from feeling like I’ve just stuck my fingers up and my tongue out at my health issues helps to get me through the flare,  which is finite, whereas the achievement will be with me for life.

Ah yes, I love Tai Chi!
I’ll be practicing it to whatever capacity I can, including (especially) when I’m crinkly and weathered! (I was gonna say “until I’m crinkly and ricketty” but I’m already sooo ricketty it didn’t really work, heh!)

I am amazed and so pleased that I have the chance to adapt the Kung Fu around my issues, and if I never get further than the blue sash I’ll still be thrilled. 🙂

P.S. My teacher is awesomeness! Thank-you teach’!

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To my wonderful readers out there: Do something you love, it doesn’t have to be much and it doesn’t have to be difficult, but never cap your potential. What we can achieve over time can be surprising, so allow yourself room to be pleasantly surprised.

x

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

Kung Fu achievement!

Well I managed to post more of the written ‘challenge’ posts in a row than I have done before… 9 days in a row! Win! (Although some days it was just a piccy, so maybe that’s why)!

Then my brain started to waft in and out of existence like some sort of a quantum hiccup? Or something. Er. Anyway.. it probably didn’t help that on the 5th of November I pushed myself a bit harder in my King Fu physio’ class for my grading. Yep. That’d do it!

As I’ve said before (when posting about starting Kung Fu and gaining my white sash) I attend a class focused on technique, so there’s no press-ups or doing laps round the gym or weightlifting or any of that other stuff that would induce exorbitant pain levels and kick in first with a good strong near-syncope response! We learn techniques and we practice them slowly because we have to get them right. If we tried to do them fast we’d end up with a sloppy technique so it’s a totally different animal to the way the kickboxing, muay thai and MMA (mixed martial arts) are also taught there. In fact it is much more like the Tai Chi that I also study at the same gym. There is a large amount of overlap between Tai Chi and Kung Fu in the style of moves and their applications so I find that each one has insight to give to the other, which is pretty cool.

Anyway, there I was on the 5th at the gym demonstrating different moves that I had learnt, both on my own and in slow-mo ‘sparring’. (I don’t do sparring exactly, I suspect I look more like a crazy slow-mo flapping starfish heading towards my opponent / bemused classmate)!

Here’s a pic’ someone took on their mobile phone of me doing some basic punch exercises at the end (my body was trying to keel over by this point so I’m concentrating very hard)…

KF Grading for yellow sashI passed the grading and now have the honour of wearing a yellow sash…

KF yellow sash

Wow!

As regular readers know, I don’t cap my potential. I’d rather enjoy the present and keep working to see where it might take me. I basically aim ridiculously high on purpose, and I strongly value each achievement that I manage along the way however far I manage to get.

I am lucky to have a teacher who is used to thinking adaptively from teaching Tai Chi to people with various health conditions, so she’ll help me find ways through wherever possible. There are no free passes and I wouldn’t like it if there were, but thinking adaptively around my health works.

I spoke to a fellow patient who used to teach martial arts (and who is wonderfully encouraging to me with my attempts at learning in this field despite the health issues – thank-you, you know who you are 😀 xx) and was ever so pleased to hear about adaptive teaching at her club where one wheelchair user was working up through the belt system. I know of others who have also followed right through to black belt despite only the use of one arm, and such like. There are many different styles of martial arts that have developed over the centuries which tend to suit different types of body sizes, strengths etc. It makes sense for someone like me to learn a defensive style which uses technique over strength, even if I was healthy I would choose from the defensive arts because it would work better with my frame and strength anyway.

To me, developing alternate aspects to allow for health / physical limitations is as sensible as choosing the right martial art for our body. In fact it is positively encouraged in Tai Chi – Eastern views of Tai Chi is that it is for anyone of any ability, and any good martial arts teacher will be willing to adapt for their students where required. I have spent lessons practicing my arm movements whilst sitting on a chair and I have spent lessons practicing only footwork when I couldn’t twist my painy lower back.

I incorporate the classes into my paced physio’ time, so that’s how I fit it into the pain management. The big problems for me are the autonomic sillies.. if I get slightly out of breath (pretty easy as I’ve not been able to exercise other than physio’ for so many years) then my heart goes far faster than it needs to, I get fainty and sometimes the palpitations and/or dysrhythmia kicks in. So I need to learn to go even slower when these start happening.

I’ve found that the palpitations and dysrhythmia are getting less common at the moment (they got worse on my current meds and the side effects aren’t improving so currently I’m gonna go with my ANS adjusting to the regular classes) (fingers crossed anyway)!

And that’s my exciting news! 🙂

Oh yes, and I’ve got a mini-tournament in Tai Chi at the gym on Sunday where I will be performing the Sun Style 73 form in front of others for the first time. It’ll be my practice at being in ‘tournament mode’ for next April because we’re learning more about how my health reacts each time I do it which means I can plan better each time. Fingers crossed that I don’t make too many mistakes!

Big hugs from me, I hope that you are all having as smooth-running a day as possible,

x

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

Ev’rybody was Kung Fu fightiiiing

So… I have news…!

As many of you will know I’ve been spending some of my crucial physio’ time learning Tai Chi for the past couple of years. I’m still going, that’s not the news, no change there. Although, news-wise, I’ve just learnt the final moves to the Sun Style 73 form, and I’m also learning the Yang Style Sword 16 form. Wheeeeee! Love it!

My teacher and her business partner have various martial arts classes taught at their club, not just Tai Chi. Of course most martial arts are fast and waaaay beyond me in terms of fitness and health requirements. Classes include Kickboxing, Muay Thai and Mixed Martial Arts.

But a while ago they started a new class which massively overlaps with Tai Chi. It’s not focused on fitness, but instead on technical aspects. It’s a mix of Chinese Boxing with Kung Fu. After some discussion with my teacher I decided to give it a whirl! *gasp* Which basically means that I get to apply my Tai Chi knowledge, learn some new moves, feel safer for knowing some self defence and it allows me to push my physio’ within a safe environment.

Many years ago the first physiotherapist I saw at a hospital told me that I should be able to do anything within my physio’ time even if my pain levels then go up and I keel over later. Of course that was also the physiotherapist who decided by herself that my diagnosis from the national specialists was not actually true, so she worked on the assumption that I had a common or garden type of chronic pain rather than the multi-systemic reality of CRPS. *sigh* Don’t worry, her boss knew the score and I worked around her! But as I’ve worked at the physio’ pacing over the years I have found that I can do more during my physio’s on less symptomatic days as long as I stick very carefully to the time limit. I inevitably experience greater pain and symptoms post-physio’, but if I am consistent and don’t push it too much this actually helps to keep my pain levels from soaring as high as it used to overall. (Which, for a CRPSer, is pretty good)! As long as I spend the rest of the day resting and recuperating (which I have to after any physio’s anyway). Being trapped on the sofa on painkillers is my reality whatever activity I do during my physio’ time, so a fulfilling physio’ helps me cope with the recuperation time.

It helps enormously that my teacher has worked with me in Tai Chi for a couple of years… she knows me well enough to know that I push myself too hard sometimes and so she reels me in a bit! She also is pretty good at spotting when I’m having a symptomatic day, and knows when not to pick me up on certain types of errors because they’ll iron themselves out when I’m feeling better. Although she does not know lots about the complex condition (I mean, it’s not like it’s a ‘common knowledge’ kinda condition!) she has taken on board all sorts of information about the kind of problems I’m trying to work around. Yep. Basically she is a Superhero teacher!

So I’ve been attending these Kung Fu lessons once a week and learning how to deal with things like someone grabbing my arm or my top (handy arm locks with minimal effort), how to apply the kind of moves I’d previously only learnt in slow mo’ (like sweeping someone out of the way with minimal effort), and different kinds of blocks and responses to someone moving in to throw a punch or a kick (in slow mo’ because I can’t react to it fast yet 😉 ).

Kung Fu is all about technique and it’s defence-based. So moves begin with a block and then respond in very straight forward ways to use the attacker’s move against themselves. It’s about the quickest ways to relieve yourself of your attacker so that you can exit the scene safely. My teacher is used to working around students with injuries and/or health limitations, so I really thank my lucky stars that I flukily ended up in her class at the gym as it turns out that it was the beginning of a journey I could never have guessed at the time. 🙂

I guess you may have heard of the phrase “once in a blue moon”? Well, yesterday there really was a blue moon (four full moons instead of three during this quarter of the year) and one of those ‘once in a blue moon’ things really has occurred…..

I have been awarded a white sash in Kung Fu!

Wheeeeeee!

Kung Fu white sash

Although I have been considered a bit special for a while as I’ve found it really hard to think fast after the controlled Tai Chi forms, I am hoping that if I slowly practice the moves during physio’ time that I may continue to improve.

It makes no difference to my condition other than a different type of physio’, and it makes little difference to my disability except that I am experiencing a bit more fallout pain-wise (but that’s for me to deal with, my inability to function the rest of the day is no different to usual in practical terms). It does, however, make me feel less vulnerable, allows me to feel more confident, to meet more people, to add to my Tai Chi with greater knowledge of how the moves are used in applications, to feel proud of trying something new and (hopefully 😉 ) progressing, to give me new goals to work towards, to share something martial arty with my boyfriend (because his Kickboxing classes are for crazily fit people only!). It is adding value to me and my life and that’s what is important. I also have a background hope that it will help to build a little muscle to reduce the partial dislocations, too (<crosses fingers>)!

I am very happy to have earned this sash. If I didn’t know better I would think they were being kind to me, but I do know better – they make sure that everyone is up to standard and then some. So I guess I must’ve actually earned that sash. I wonder if I can earn the next one? It might take me a while…. there isn’t another ‘blue moon’ until 2015! 😉

x

Oh yes, and on other news…. I’m on the Tai Chi team for the club. Bring on next year’s nationals! Who says a chronically ill disabled girl can’t compete for four minutes at a time and win some medals?! hehe 😀

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

x.

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

Mission accepted. The search in town…

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

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

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

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

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

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

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

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

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

Hot water bottle, Hot Stuff

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

Mission failed?

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

Charity shop buys

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

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

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