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

Photo Challenge for CRPS Awareness, Day 27

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

Day 27 – A picture of your favourite triumph in pain memory

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Okay, I’ve already mentioned the Tai Chi medals during the challenge, so today I’m going for the academic side of things.

On the 12th June I got the results for the final research module I’d completed in March towards my Masters Degree. I passed! Which also means that I have successfully completed my MSc. Hurrah!

Yes, I’ve got degrees before but this one was different. I studied for my BA Degree straight after school. I did it because I’d always expected to continue in education and back when I was 18 the UK education system did not involve scary tuition fees so the money we owed by the end of it could be just a few grand, not the devastating amounts that students find themselves owing these days. I was lucky. And I didn’t know how lucky I was at the time. I pottered along in life, got myself a job, met a guy, changed jobs to move to the same area as him, bought a house…. all that jazz.

By the time I studied for my BSc Degree I was in lots of pain. I studied it to retrain because I had a career path in mind, I wanted to make myself useful in the world and I’d spotted a niche that I could make a difference in. During that degree my health got worse, I went from crutches to wheelchair, I went from working to having to give up work, and I went from having no clue what was wrong with me to getting a diagnosis. The diagnosis turned up in the same month as my final exam.

My health was to scupper my career plans, but I didn’t know it back then so I rolled straight on into my MSc. I studied three of the four modules then had a major life rethink, and moved to a different county to be closer to my family. My family have always been most important to me in all the world so, unsurprisingly, my assessment of my new disabled life made me decide to change everything to be nearer to them. But I still could not give up all hope of following my career path, so I moved closer to my family but not right over into the same county because my hypothetical working future had more of a chance in the inbetweeny bit of geography. So, closer to my family and more of a chance of making a positive difference in the world. Ace, right?

But I had no money left to pay for the final module. As time went by my health got worse rather than better. By the time I’d saved enough money to do the final module (that took 6 years) the neuro’ symptoms were rife. My chances of studying to the standard I had done previously were seriously compromised. My viable study time was no longer ‘just’ affected by the chronic pain issues, but also by severe autonomic issues as well as brain fog that could render my brain pretty useless for days, and even weeks, at a time. I’d be a fool to spend the money on a venture like that, right?

So, fool or just plain determined maybe, I figured that my choice was to either a) try it and fail knowing that I’d at least tried, or b) not bother and always wonder if I could have done it. The second option didn’t appeal at all. So I went for option ‘a’.

Towards the end of the time period that I had available to get my research completed and written up as a dissertation… I lost my brain. For three looooong months. Good ole CRPS, thanks a bunch! So by the time I could comprehend things properly again I was three months behind. I was in a bad position but I wasn’t going to give up. The encouragement and belief in me from my friends online was phenomenal, plus my fellow students have been such a lovely bunch of people to travel this road with, of course Magic Dude did anything he could to help me healthwise so that I could concentrate on studying, not to mention the two amazing ladies who were my research reliability coders.

On the day that I completed my dissertation I took photo’s of the event. Whether I passed or failed would not detract from the achievement of just completing the challenge and doing the best I could for my fellow patients who I hope my research can eventually help.

But I did pass. And now I’m awaiting hardcopy feedback from the university so that I can address any issues before completing the paper for submission to an Open Access journal out there somewhere. I even entertain the thought of a PhD from time to time! But one step at a time. And each achievement should be celebrated rather than rushing on past it. Life is to be lived, good moments are to be savoured, and being proud of yourself is a good thing.

Completing the challenge was an achievement. Passing was a bonus!

MSc

x

P.S. If you’re thinking about studying despite your disability I say “go for it”! In the UK there is a Disabled Students Allowance (DSA) which can help you. It applies to all universities including the Open University (if, like me, regular attendance is not an option). Here’s a post I wrote previously about studying with the help of the DSA.

Photo Challenge for CRPS Awareness, Day 01

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

Day 01 – A picture of YOU today, introduce yourself

I’m a post-graduate researcher with multiple chronic conditions. Silliness is a tool in my pain management tool kit. 😉

Pretend Superhero

x

Conference presentation on wheels

As you are probably aware.. I am awaiting the results to my masters dissertation, and trying to write a paper during my Brain Moments between the bouts of more usual symptom-induced brainlessness! The research I conducted for my dissertation is very important to me as I wanted to conduct something that could prove useful to my fellow CRPS patients. And I was ever so pleased to get the opportunity to share my research, my knowledge and my enthusiasm with fellow research students at a recent conference: the Wessex Branch of the British Psychological Society Annual Student Conference 2013 which was held at Bournemouth University on the south coast of the UK.

The conference is open to undergraduate and postgraduate researchers, and the organisers went through the applications, allocating students to either make an oral presentation or a poster presentation of their work.

I was allocated a time slot amongst the afternoon presentations. All of the postgraduate research talks were helpfully timetabled to be presented in the same lecture hall. This was wonderful as so many of the postgrad’ research projects overlapped in some way with my own, so I was looking forward to meeting other researchers with interests that intertwined with mine.

First hurdle: Planning how I was going to get through the day and, of course, the travel arrangements were a massive part of that. I worked out that as it was a weekend, and if I took my wheelchair with me, I could drive there and get through the day as coherently as possible. The problem was that I did not know how much the pain or the dysautonomia would flare and so I had no idea whether I would be safe to drive home again afterwards.

On a scale of one to batshit

This was solved my my outstanding Local Friend who offered to drive me, my wheelchair and my collection of pain management paraphernalia, to and from Bournemouth Uni’. Wow! That sure made a difference.

The usual concerns of accessibility were all answered beforehand because the university has an outstanding website with comprehensive disabled access information. All I had to do was check which building the event was in and loh!, I could access all the information I needed to plan my levels of needs for the day at just the click of a button. I was super impressed. 😀

I may have puzzled some of the attendees in my usual oddly disabled way, of course! I walked in pushing my wheelchair, then I left it to one side to get a cup of tea and chat with a couple of random friendly faces about research stuff. 🙂  I wheeled the chair into the main lecture hall and went to sit on a seat, realised that the wheelchair would be far more comfortable with the seat cushion and turned back round to go and sit in it for the official start and introductions. By this point there may have been some attendees a little bemused by the miraculous walking wheelchair-lady, hehe, I am a living education, me! I probably only puzzled them further when I got up and walked out to the foyer during the break to grab another cuppa! But that was a mistake on my part as the pain levels began increasing more rapidly after I did that so I became wheeled for much of the rest of the day.

The presentations were great, some of them were great fun, too. Two undergrads stood out amongst the various presenters, one for their sheer enthusiasm and knowledge on the subject, as well as a creative way of engaging the audience and getting their main initial point across, the other for an intriguing study which resulted in an unexpected outcome which opens up the possibility for further research into a very cool discovery. (I’ll write about this last one sometime, the researcher has very kindly sent me a copy of the main details and some related research links).

The afternoon was extra fab as the other researchers’ chosen areas overlapped with my own, and postgrad’ researchers tend to be pretty engaging simply owing to their interested immersion in the subject matter. I was scheduled 4th in the small lecture hall at 2.15pm – so thankfully not during the graveyard shift when conference attendees tend to drift off as a result of information overload! Although, to be honest, no postgrad’ was going to nod off in there as we were all so interested in each others’ work. 😀

I’m not quite sure when I stopped fretting about presentations. I used to go bright, neon, ear-glowingly red. I had also learnt never to hold a bit of paper or to accept a plastic cup of water as anything in my hands would get shaken with the nerves! Maybe it’s age, maybe it’s familiarity with and enthusiasm for the subject matter, or maybe it’s as a result of learning to be ‘me’ in the face of whatever this disability (or disabilities I guess) throw at me. Maybe it’s all of them. Who knows. But I wanted to present that research, I was proud to be there, I wanted the listeners to be interested, to have their minds intrigued by what I was talking about, to take some smattering of knowledge away with them that day from my fifteen minutes chatting to them.

I was in my wheelchair for the talk. I hadn’t drunk enough fluids during the morning and my body had got a bit near-fainty, so sitting down meant that my blood wouldn’t pool as much so I should make a little more sense (hopefully 😉 )! So I wheeled on over to the front and got my memory stick plugged into the lecture halls sci-fi console!…

Sneaky pic' through the door glass by Local Friend!

Sneaky pic’ through the door glass by Local Friend!

I talked about CRPS, what the letters stood for, and what the words mean, why it’s more complex than that. I explained CRPS in basic systemic terms. I nattered a little more about the neuropsych’ aspects as my audience was comprised of psych’ research students so I knew they’d be interested. I showed them the McGill pain scale, and told them what my research was about, why I was conducting it. I nattered away and wished I had more time. I could so easily have gone over time. Postgrad’ research is a whole different kettle of fish, as an undergrad’ I would still have been nervous, apologetic and glad when it was over. As a postgrad’ I was earnest, enthused, and cramming in as much as I could in an accessible manner! Oh I like this change. I like this new daring. More please! Hehe

What a lovely audience clapping at the end of it. How lovely of the undergrad’ helpers to tell me that they found it really interesting and wished that they could have listened to me for longer. Thanks girls, x

Immediately after the presentation, notes still on my lap, flask of water clutched between my knees!

Immediately after the presentation, notes still on my lap, flask of water clutched between my knees!

My Local Friend had arrived while I was presenting and I was too hurtee to face getting into the car. I needed some physio’. The rep from the student engagement team of Bournemouth Uni was superb in her support all day long. A lovely lady determined to make the day the best it could be, she kindly offered me an empty lecture theatre where I could do some stretches and physio’ in. So I wheeled off into the big empty space, stretched a bit, ate some chocolate (totally required, right?!) and practiced some Tai Chi whilst my friend sat halfway up the seating area taking random piccies of my physio’ oddness!

Conference, Tai Chi

Seeing as I’d stayed later than intended I was encouraged to linger long enough for the awards ceremony. I hadn’t even taken on board that there would be awards, I was thrilled enough with the day as it was, but what a lovely way to bring people together at the end of the day and relive the presentations to vote for our faves.

I got my certificate from the British Psychological Society for being a presenter that day. I also got surprised when I was called up to receive the award for 3rd place in the post-graduate presentations. Not bad for my first ever research presentation, eh?! Yay!

That was my conference on wheels. My adventure made possible thanks to my crazy chauffeur who decided that giving up his Saturday to drive me to and from was a just cause. Thank-you Local Friend!

And thank-you Magic Dude for looking after me when I got home after my long day, x

I’ve been asked if I would present again next year! Wow, fabulous! I’m not sure if I’d be eligible, mind you, as I may not be a student by then (depending on whether my brain can work through the complex organisation of PhD possibilities in time), but if they still want me then I’ll be there. Somehow. I’ll be there. 😀

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

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

Dang, I sure know how to party! 😉

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

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

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

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

Before the shiny pyjamas!

Before the shiny pyjamas!

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

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

I won.

Ohmygosh, I won!

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

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

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

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

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

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013

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

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

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

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

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

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

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

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

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

A gold medal for my physio work :-D

Ladies beginners class, national comp, gold 😀

x

Crazy Sock Day!

Yes, you read that correctly… today is Crazy Sock Day, 2013! 😀

Crazy Sock Day 2013

And, yes… I am wearing my mismatched, loud stripey socks as I write this…

Crazy Sock Day 1

This is an event created by young Melanie Dickens to raise awareness about her conditions CRPS and Gastroparesis.

The premise is beautifully simple – wear crazy socks and when someone asks you why you’re wearing them you can tell them. Simple see? Go ooooon, you knooow you want to 😀

Melanie Dickens, Crazy Sock Girl, to post on blog with permission from her Dad Shawn, x

Super Melanie herself: Superhero and Gatherer of Excellent Socks
(picture posted with kind permission from Crazy Sock Girl’s Dad aka Super Shawn)

Here’s Melanie’s Facebook page created for this year’s piccies to be posted upon… https://www.facebook.com/CrazySockDay, and there’s plenty of piccies turning up on there already 🙂

There’s still time people, get your socks and cameras out and join in 😀

You can even post your own crazy sock piccies on your social network pages, that way your friends can see them and gain helpful awareness even if they aren’t online today.

It’s fun and it’s easy to do. I suggested this event to my friends and readers on Facebook. It’s something anyone can join in with, it takes very little effort and you don’t necessarily need to know loads about the conditions, it’s an awareness thing. It’s the amount of heart that you put into it that counts. If someone asked me why I’m wearing crazy socks then I’d most likely science them into a brain-overloaded stupor with my first coupla sentences! So trust me – you wouldn’t be bad at this at aaall.

So my suggestion to my friends (who I can’t expect to know aaaall about my health the way I do, of course!) was that it would be a great way to let people know that they can actively try to avoid getting CRPS themselves (hurrah! fantastic knowledge for friends and loved ones) by taking vitamin C after any injury or operation (see the top of this page for more info) and also by not putting ice straight onto their skin (always wrap it in something like a tea-towel) and vary it… on for 10 minutes, off for 10 minutes, and so on (as ice switches off part of the autonomic nervous system if the skin temperature drops below a certain point and when it’s switches back on again that’s when the troubles become apparent. See? Science-induced stupor alert. Somebody stop me! 😉 ). (For people who already have CRPS, well, we steer clear of ice altogether as it’s really baaaaad news for the majority of us).

Crazy socks *and* tea, could this day get any better?

Crazy socks *and* tea, could this day get any better?

My lovely Magic Dude good naturedly takes his role as Back-up Blog Photographer all in his stride. Although I do get a few funny looks when I ask him to take a piccy of me looking slightly, erm, unusual! And that little amused look cropped up when I calmly and seriously donned my kinda-sock-hat-thingy! 😀

Crazy sock hat thingy and tea

Erm… yes, well, it was a thought. Don’t think it’ll catch on, though.

I don’t usually get to go out on a Thursday. Wednesday I’m at home recovering from my Tai Chi clas on Tuesday, and then Thursday I’m at home preparing to be able to get to Tai Chi on Friday. So there’s no-one to ask me about my socks today, even the postie had no reason to knock on the door and get sock-blinded! Good thing I can wear them on here as well, then, eh?!

Today was a little different though. I got a letter through the post advising me that disability benefits peeps are taking a little longer to process my Disability Living Allowance form as they’ve asked for a letter from my consultant…… who I haven’t actually seen yet! *sigh* I have, however, had two days of preliminary tests in his department so I wrote a responding letter basically saying… ‘hey, he hasn’t even seen me yet, but if you get any info’ on the tests send me a copy coz I know nuffink as yet. Oh and P.S. you do know he’s only looking into the Dys’ stuff right? I don’t have a CRPS consultant as I’ve been living with it for over 13 years.’ Hopefully that’ll clarify things for them (I’ve told them all this already, but hey, reiteration often helps the penny drop, eh?)! Blah blah blah, enough of the serious, get back to the Crazy Socks, woman!

Having to put my reply in the post meant that I had to allocate part of my morning physio’ to getting to the post box and back…. whilst wearing my mismatched socks! Yay!

Totally normal!

Totally normal!

I didn’t meet anyone to talk to, but I did get beeped at by a passing car. Not sure if they were trying to let me know that I’d put odd socks on or whether they were beeping a beware to other drivers about the imminent brightness they were about to encounter, but hey, the socks got noticed!

Well done Melanie for creating a day that many people join in with and which is so effective owing to it’s simple and cheerful foundation. Wonderful stuff honey, and congratulations on your third Crazy Sock Day. I look forward to many more, x

Olympic torch relay comes to an end

Today the Olympic torch finishes up its journey with the lighting of the cauldron in the main stadium. Many worthy people have carried it on its journey, some of whom I have mentioned along the way. Some fellow patients slipped under the radar on this blog as their conditions were not mentioned online. But whatever the reasons for a torchbearer being nominated, it is always glorious to see such wonderful examples of our fellow humans doing good, and shining some light upon the world. (In the case of the torch, I guess that’s quite literally shining light, too)! They lift our hearts and make the world a more beautiful place.

One fellow patient who slipped under my radar was Nicola Blythe, who carried the torch in Carrickfergus in Northern Ireland on the 3rd June. (Yes, Nicola, you do not escape a mention, tee hee 😉 ) A lovely friend of Nicola’s told me of her inspirational qualities which led her to be nominated to be part of the Olympic proceedings. Volunteering as a co-ordinator to enable disabled individuals of all ages to get sailing, Nicola is a crucial and hard-working member of the team. So much so that the nomination came from the Honourary Secretary of Belfast Lough Sailability, which made me grin even more. Fantastic stuff from a fellow CRPS patient who first and foremost is themselves rather than a condition, and who also chooses to help others have some fabulous experiences. 😀

After all that relay jogging around the UK we await the opening ceremony with mixed excitement and intrigue. After all… countryside animals, fake rain clouds (in case it doesn’t actually rain), pseudo music festivals and a hoard of NHS nurses does sound rather intriguing!

Huge cheer to all of the torchbearers, I am glad that you got to participate and create some amazing memories. And also much love and big hugs to all of those out there who were not able to get involved, but who are shining lights in the world where ever you happen to be, xx

Amazing CRPS patient carries Olympic torch today

One thing that many of us CRPS patients find hard is when we meet or hear about someone much younger than us having to live with the disease. I have spoken to a few teenagers with CRPS online and, oh-my, they are astounding! The positivity and energy they bring to living their lives despite the disease is admirable beyond description. Many of us talk about things we’ve done and inevitably end the story with “…but that was before I had CRPS, of course.” So to think of having even less time before the condition became a part of our daily lives, less time before we had to find out how strong we really could be. Our hearts go out to all of our fellow patients, but something extra goes ‘twang’ in our hearts for our young fellow patients.

George Coppen is one of the people selected to carry the Olympic torch further on its journey around the UK today. He is a shining example of the strength and determination that teenagers amaze us with. He achieves fantastic involvement in life and sports despite the CRPS pain in his legs.

Rather than give in to the pain, George is an inspiration in his involvement in sports, getting involved in any way he can. He referees the occasional basketball game, competes year after year in the World Dwarf Games, having also competed in the National Games held by the Dwarf Sports Association UK (DSAuk) since he was pre-school age, and he is pretty darn good at… wheelchair slaloming. Yep, you read that right! I had trouble even functioning in a wheelchair (pathetic girl-arms was my excuse) and I never even had the courage to try ickle wheelies in it, so … slaloms?… Crikey!

Hats off to George 🙂

He also encourages others, which is what makes me grin all the more. That’s one remarkable young man, for sure.

So today, look out for him in Derby if you’re nearby, and cheer him on from afar if you’re not. Coz there’s a fellow patient out there, carrying the torch despite the pains it will cause him. I hope he has a fab’ day and that gets to grin every time he remembers it. He deserves to be a part of this year’s Olympic events, and I’m sure you’ll join me in cheering him on from here, too. 😀

X