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

Joyful moments from 2013

Last January I posted about trialling a ‘Jar of Joy‘, here’s a snippet from that post…

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

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

I definitely found the Jar of Joy a very positive experience, so once I’d emptied the Jar (and saved the notes because so many positive memories is a very valuable asset 🙂 ) I set it back on the mantle ready for 2014. My first note was: “First Tai Chi lesson of the year”.. And yet here I am in July and I still haven’t written about 2013’s Joys and the whole Jar-of-Joy experience! *gasp*

Jar of Joy, end of 2013

Tipping out the contents of my Jar of Joy on New Years Eve, whilst wearing a ballgown at home 😉

So after collecting Joys to be remembered, how have I found the experience?

It certainly makes me focus on the positives in a more tangible way. I am naturally positive anyway, but I found that sometimes I would forget to physically note down good things and then I’d have a re-cap of the previous week or two and write down several good things in one go to catch up. If I didn’t have any that readily came to mind then I would think harder to find some. That’s all to the good because it shows that even those of us who are naturally positive can benefit from the process, so for my fellow patients who are currently in earlier stages and/or really bumpy times this could be incredibly useful. We can but give it a whirl and see. 🙂

So if you’re thinking of trying out the Jar of Joy and would ilke some ideas of the kinda things to include, here’s what I ended up noting down as Joys in 2013…

I looked through them all and grouped them by theme. I found that I have some main categories in the way I note down the good things I experience. They are… outings and friends, enjoyable physio’ classes, studying, health blog and arty stuff. Here’s the kind of things I have included from my 2013 adventure on these themes…

Outings and Friends: I tend to include eeeeeverything!

For anyone who has spent any length of time unable to get out much, having someone help you to go somewhere different means a massive amount. I’m not sure that others truly realise how much this means to me, but any of my friends recognising their inclusion here… now you know how much it means to me to see your wonderful selves, xxx

So this category included things like …

  • A couple of meals out and a picnic in the sun after a physio’ walk
  • Physio’ walks somewhere different: like going into town to photograph some of the sculptures on display there in the Summer, or a walk in a park next to a river, or hanging with a friend and their little ‘un in a park – each time I do something nice it gets written down and popped into the jar. The more I remember to do this the more Joys end up in the Jar and the more positive it is looking back over them. Like getting driven to one of Elder Niece’s swimming and lifesaving classes so that I could sit poolside and be a happily proud Aunty! 😀
  • There were some trips to the cinema (Mostly Superhero oriented, with some Star Trek and Hobbits thrown in for good measure)!
  • One concert (complete with disabled seating area and noise reduction ear-plugs)!
  • And even a camping trip (a massive yearly undertaking but made viable thanks to Magic Dude being such a Pro at looking after me these days)!
  • We even turn hospital visits into Joys by taking the wheelchair so that we can go somewhere afterwards if I’m up to it (I wheeled round some of the Natural History Museum in London for the first time in, oooohhh, about 28 years)!
  • There were a couple of weddings to gleefully attend and some seriously random things… I mean… recovering from errands in town and ending up getting to hold a 2012 Olympic torch in one hand and a 2012 Paralympic torch in the other hand… *that’s* random! And yes it went straight into The Jar, hehe
  • Randomly getting treated to a free lunch in a coffee shop because a local radio happened to be there paying for people’s lunches that day (it cost me a photo’ posing with Magic Dude and the two girls from the radio)!
  • Meeting Neil Gaiman for, oh, several seconds! Coz I went to his talk and booksigning in my wheelchair for my birthday event. He signed my copy of “The Ocean at the End of the Lane” and wrote “Happy Birthday” in it too. 😀
  • I eeeven managed to go out aaaall by myself one evening *gasp*, and as everyone drank booze around me, I sat happily drinking a tewwibwy Bwitish Cuppoftea! 😉

Friends, (but not outings)!: not every chat I have was noted down but things that stood out for me as particularly smiley were…

  • New Year’s Eve 2012-2013 when our Local friend came to visit and he, Magic Dude and I watched some “Big Bang Theory”, then “Despicable Me 2” and later all “cheers”ed each other at midnight.
  • Photo’s sent to me of two grinning friends in two different countries who I sent spoons to because they needed more (Spoonie ref’).
  • A conversation with 3 fellow CRPSers who have martial arts backgrounds, we were talking about adaptive programs for disabled as a result of my adaptive Kung Fu experience. Their knowledge and enthusiasm is fabulous.
  • Particularly surprise presents from friends and bruv which made me grin and laugh…things like standard kitchen teaspoons (Spoonie joke!), a battery-powered tabletop blue Dalek that says “Exterminate” whenever it bumps over anything, some cans of Simpsonesque “Duff” beer.. X-D And some especially heart-warming surprises… an unexpected DVD from a friend and a painting created especially for me by another friend. Another surprise was when Magic Dude got me Vol. 1 of a Serenity graphic novel. (“Oooh, Shiny!”)

My enjoyable physio’ classes: Tai Chi and adaptive Kung Fu.

It’s been an amazing year for Tai Chi, it’s been like a dream. If it could never happen again I would live in the joy of that year forever and a day! 😀

  • I had to give up physio’ at the gym owing to my Dysautonomia symptoms getting so out of hand, and yet I noted it as a Joy as I moved across to the martial arts school to focus on Tai Chi physio’s instead – the positive spin we put on events like this is super important for those of us living with chronic illness.
  • Even my first official pair of Tai Chi shoes got noted down and put into the Jar!
  • My first time performing a Tai Chi demonstration with my teacher (for a local Chinese New Year celebration) and my first time performing at the Oxford and London Tai Chi nationals at my beginner’s level.
  • I started learning Yang style sword Tai Chi, just a short 16 form, and even got my own practice sword.
  • I also noted my 2nd anniversary of learning Tai Chi with Joy. It is an achievement just doing it at all, it’s important to acknowledge the fact that our achievements are extra super for being done whilst working around the health stuff too.
  • I also started learning Kung Fu. It’s with the same adaptive teacher so I can learn it around the issues that my health conditions present. (Yes, she’s awesome, I know)! I earned my white sash and then my yellow sash, too. I am very proud and very happy.

Studying: I was completing a distance learning module during the first 3 months of 2013. It had been a really tough journey and I had lost my brain completely in any critical thinking at all for a solid three months at the end of 2012, so I had a large amount of work to do to get to the finish-line in time. So my Joys were..

  • The wonderful support and encouragement from friends, (especially my two research coders).
  • The fabulous number of fellow patients who chose to participate in my research study.
  • The day the 3 copies of my research dissertation went in the post.
  • The day I was told I had passed my MSc in Research.
  • The amazing number of requests from fellow patients who wanted to come along to my graduation. I couldn’t attend the graduation ceremony that Autumn, but my friends warmed my heart to be so supportive of me, xx
  • The success of my first ever conference presentation. It was about my CRPS research and even won me a prize (£15 in Amazon vouchers which I spent on a Firefly/Serenity tee-shirt. I’m sci-fi to the end, baby!)

Health Blog: That’d be this ‘un, here!

  • I was nominated for four WEGO Health Activist Awards
  • I posted my 100th blog post
  • Sylvie (my fellow CRPS-blogger in Belgium) and I contacted some fellow CRPS-bloggers and we all posted an international themed blog post on each of our blogs on the same day. That was pretty cool – the blogs were written in the UK x 2, USA x 4, Canada and Belgium 😀

By the way, I’d love to know more of my fellow bloggers on Facebook, so drop me a line in the blog’s Facebook page if you want to get in touch 🙂

Arty stuff: it is very rare that I can risk the physical indulgement but I love it.

  • A what-the-heck, sod the pain-inducing cold I’m gonna snow sculpt with the nieces. We made a snow lion with radishes for eyes and twigs for whiskers 😀
  • A second bout of craziness doing some snow sculpting with Magic Dude at the house. Mine were terrible and kept falling apart that day, but his was a kinda punk/octopus/chicken dude (!) and held together nicely!
  • A note also went in the jar for each of the pairs the personalised champagne glasses I painted for each of the two couples whose weddings we attended last year.
  • I totally forgot to write a note for starting to paint the back panel for a bench that will sit outside… so I’m gonna write the note retrospectively now! 😉

Three notes didn’t fit perfectly into any of the main themes: One was a note about wearing my ballgown whilst sat at home for New Year’s Eve, because I loooved getting to wear it! Another was a surprise note that I found on my car windscreen after a Tai Chi class – Magic Dude had been in the area and spotted the car so he left a gorgeous note for me. The other was the one and only note that related specifically to my health, it said:

“London trip (2 days re autonomic appointment)
went much better painwise thanks to the wheels”

– Nothing about the appointment, just that the wheelchair helped enormously. So really it’s about a tool to help me, not the appointment itself.

I had made a conscious decision not to include health stuff in the jar. After all a good appointment is not a joy, it’s just not a cack appointment for once! Or is it? Should I start including health-stuff? I’m not sure. The guide I use is.. would it make me smile if I re-read the notes when going through a tough time? If the answer is no then I won’t include it. And although the health positives are good at the time, I think that during difficult times of the year like christmas and new year I would not want to have my thoughts drawn to health stuff in any way, I would rather read about totally separate Joys. So I suspect that, unless it’s a cool physical achievement of some sort, health stuff will not be a part of my jar this year either.

So what do you reckon?

Is there anything else I should focus on?

Any events or circumstances I’ve been neglecting to write notes about?

So far in 2014 I’ve also been including that I’ve had some lovely conversations with friends who I originally met as fellow patients, sometimes on the phone, sometimes on Skype. I’ve also just realised as I write this that I’ve not included any gardening successes, or happy purchase of a new plant to grow, or seeds to germinate. The key to the Jar of Joy is that it helps us to spot more of the positives, even if we’re pretty positive to start off with and, as you can see, I’m already spotting the potential for even more Joys to get noted down for when I really need a boost when times get tough.

If I carry on like this… I’m gonna need a bigger Jar!

Joooooy! 😀

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

Sparkling determinedly for the New Year

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

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

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

2013 Xmas nails 1

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

2013 Xmas nails 2

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

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

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

2013 Xmas nails 4

Ta-daaaaah!

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

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

Like this…

2013 Xmas nails 5

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

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

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

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

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

Checklist:

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

Sorted!

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

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

x

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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

It’s not all in your head!

There are two parts to today’s post again.

WEGO’s health blog challenge: “What’s the most ridiculous thing you’ve heard about your health condition?…”

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The most ridiculous thing I’ve heard about my health condition(s) is the shuddersome concept of… “it’s all in your head”!

Yep, we really get told this in some appointments. Sometimes it’s merely a medical practitioner trying to explain autonomic pain amplification and doing it reaally badly! But often it really is as extreme as it sounds – genuine physiological symptoms get written off as psychologically founded.

Fortunately there is oodles of research these days about how psychological effects in the kind of conditions that I have are often caused by living with the condition itself. So we have plenty of research papers to back us up, the only problem is that we have to be the ones to find and share this research because non-specialist medical staff have often not come across them. (See my ‘What is CRPS?‘ page for some handy research paper references, and the explanation about interpreting anxiety symptoms wrongly applies to Dysautonomia patients, too).

It is important for our doctors to remember that an understandable reaction to chronic health does not necessarily mean mental health issues. We should not have to hide when we are struggling owing to fear of getting mislabelled.

Of course health conditions and mental health issues are not mutually exclusive: it is entirely possible for them to co-exist. This is not an black and white area, shades of grey are the norm, but even without any mental health issues at all patients with chronic health issues should still be supported both physically and mentally for the simple fact that severe long-term health problems are, at the very least, very challenging in the life changes they effect. It is an important part of living with a chronic condition to be able to find ways to keep going, to find new meanings, new value in ourselves, new ways of living and of finding joy in life. With the addition of some handy psychological tools we are much better equipped to handle our situation.

I’ve heard the “it’s all in your head” idea many times. I’m a veteran of appointments where it turns out that I know more than the practitioner, as do many of us with specialist conditions. I have the scientific info’ to undermine their erroneous comment in the sweetest most helpful-patient kinda way! 😉 (feel free to add a comedy evil laugh here!) Ohhhh yes, get in the know peoples, doctors like data so data them towards the corrected viewpoint! Most doctors just haven’t considered the possibility that a faulty ANS can cause anxiety symptoms without any pre-existing anxiety, but once you point it out it makes perfect sense to them. It’s just showing them the alternate angle that they have to think from because our conditions don’t fit neatly into the main themes of medical diagnosis. They check out the organs and do blood tests for normal stuff but everything comes back negative so they think “there’s nothing actually wrong with them… it must be psychological”. But what they are forgetting (because it is not something taught as part of main medical training) is that if it’s not the organs… could it be the wiring between them? They need to run different tests to find out.

The trouble is, of course, that we tend to learn this kind of helpful knowledge retrospectively. Years after we were told it was all in our heads, years after we cried for the lack of support from a doctor when all we wanted to do was be able to get on with our lives, years after those around us doubted that there was anything wrong with us because our doctors didn’t think there was. Years later we find out why the doctors made that error, and we try to pay it forward by sharing the knowledge with our fellow patients who are still early on in their journey. To try and help them avoid the pointless pain and waiting that we had to go through simply because doctors only conducted the usual tests and the negative results falsely led them to think that it was “all in our heads”.

Photo challenge #6 – “…something you let go because of CRPS/RSD”

Clinical Psychology2 (2)

(source)

I was retraining for a career when I had to give up work. I studied for the required degree in my own time whilst working full-time, (thank-you Open University 😀 ), but before I had completed it I had to give up work. I carried on, graduated, then started my masters degree. I did not realise I would never be able to work or study full-time. My choice of career is no longer viable. But my training was in psychology and in research, my intention was to complete the Doctorate in Clinical Psychology so that I could study the post-doctoral training in Neuropsychology. My aim: to help inform and support patients with head injuries as well as their families.

Losing that future was devastating, but it looks like I have ended up with some pretty useful skills to make myself handy to my fellow patients. Letting go of the career I had worked so hard towards was horrible, but I’m on a different path now, and I can do a lot of good on this one as well, x

Taking ownership

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

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

Pain of confusing loss, broken heart

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

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

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

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

Researching on the laptop

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

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

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

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

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

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

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

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

Dissertation parcelling up

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

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

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

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

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

x

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Introducing Signage Seymour (and a wobbly guy)

When I was first creating this blog I sat at Magic Dude’s old laptop and had a discussion online with two of my besties – my Local Friend and my fabulous university housemate. I was running potential blog names by them and we settled on the name by a circuitous route which involved much laughing and being silly. But before we could even get started I had to explain my thinking… first of all I had to divulge that ‘Auto Gnome’ is my own daft take on ‘autonomic‘!

What followed included many imaginative ideas about how to use gnomes as part of the blog and yet I have not actually done so. How remiss of me! 😉

To be honest, (<whispers confidentially>) I think gnomes are pretty disturbing! And I wouldn’t want something like that to take away from the main themes and point of this weblog. But there is someone who has been waiting in the wings a long time and who I really must introduce, although I shall be keeping him on a short leash so that he doesn’t get out of hand!

So, let me delay no longer, and introduce to you…. Signage Seymour….!

Original

Signage Seymour with his original sign

Har!

Seymour was a gift from my Local Friend and we decided that ‘Go Away’ was not really the message we wanted him to send! (Unless it was aimed at ill health of course)! So, as this month is CRPS awareness month, Seymour is now holding the banner pic’ currently adorning the blog’s Facebook page (and it is available for use if you want to purloin it), x

Signage Seymour, awareness pic 2013

Seymour is not a mascot for CRPS, though. Or Dysautonomia. Or hypermobility.
He’s more of a helper who holds important signage to allow me to get on with the writing bit! He has no battle cry simply because he does not go into battle. He’s more of a hold-your-coat sorta guy.

I like to think that I have a battle cry, mind you. When I feel like yelling “onwards” or “hurrah!” I sometimes remember that (like The Tick) my battle cry is “Spoon!”

If any of my conditions were to have a mascot though, what would it be?

– Something that bounces back time after time after time after…
– Something that takes the pain and still gets up to kick some arse!
– Something that isn’t dangerous until it’s cage gets rattled too many times in a row
– Something with hidden depths, hidden strengths and a life others cannot comprehend

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So it looks like my mascot is…..

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………………………………………………………….a Wolverine weeble!

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Of course that means that the battle cry has to be an unintelligible at-my-wit’s-end / this-is-the-last-flipping-straw “Raaarrrrggghhh!” Hehe

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Wolverine Weeble

A quick sketch on an egg is kiiinda like a weeble, right?!

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And here’s the Facebook banner pic’ in case you want it to use..

CRPS awareness month, 2013

..or you can get it directly from the Facebook page, x

I think I can, I know I can…

For today’s WEGO Health challenge….

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

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

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

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

I know I can co-write a paper on CRPS

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

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Magic Dude at Riverside Pk

Magic Dude by the river as I take autumnal piccies

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

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