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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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

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

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 😀