Photo Challenge for CRPS Awareness, Day 02

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

Day 02 – A picture of your comfort item

Tea! Even if it’s out of a machine like today whilst at the London Tai Chi Nationals…. teeeaaaa! 😉

Tea at the Nationals


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 😀


My CRPS journey to happiness

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


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

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

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

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

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

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

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

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

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

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

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

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

Elle and the Auto Gnome, Tree of my CRPS experience

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

Lotsa love and happiness from me,


New year, new thinking

Gong Hoi Fat Choi, my friends, xx Happy Chinese New Year, xx


For the last three years Magic Dude has taken me to see the Chinese celebrations in our local town. I adore the event and always take lots of piccies and come home feeling exhilarated and smiling. Today, though he had to work, and I am in self-inflicted flare anyway from my venture from Tai Chi into a Filipino stick fighting (Kali) seminar yesterday(!).

Tee hee, this was in slow mo so the camera must be on a reeaaally slow setting to make it look blurry!

Tee hee, this was in slow mo so the camera must be on a reeaaally slow setting to make it look blurry!

Ahhh, being woken by pain the day afterwards that is so bad that you stifle a scream. Good morning CRPS!

But I don’t regret it (or at least I didn’t at first!) – sometimes it feels good to dare the flare and push myself, even though the aftermath is so horrific. Every day is a blanket and hot water bottle day, but today has been a rocking back and forth inside my head day and I have been grateful for my friends online helping me through it (huge hugs to all of you).

I am very good at controlling my activity levels, at ‘pacing’ what I do, it really is the greatest tool that I have to keep the pain levels from rocketing. And yet (at the risk of sounding like I should start ordering in the padded wallpaper) I’d still rather do something different once in a while and end up with a pain flare to get through than have to deal with the emotionally painful alternative of sitting at home while other fully able-bodied people do what I’m too sensible to put my body through. Just once in a while I say, “Screw sensible, I prefer living!” Or at least that was the idea! It gets to the point where the relentlessness of the high pain levels start to make me wish I hadn’t pushed myself so hard, that I’d sat down more. I even went to the effort of forewarning the teacher but then I never dropped out! My bad! As I’m always so good with my pacing of activity and being sensible it feels good to dare to buck the trend every once in a while. But now it’s just trynottoscream, trynottoscream, iwishihadtea, trynottoscream…!

I’m still smiling with my friends, though. A video chat with one of my amazing friends online (with me still in my dressing gown and with a massive spot on my face *sigh*) meant that we ended up talking about what I’d like to do, to achieve, to experience.

So I told her my little dream… that I get paid to do a PhD (har!) that I somehow manage to do despite my health and brainlessness. That if they asked me to teach a lesson or two to undergraduates I’d be scared but I’d push myself to dare (seems daft to not even try), but I’d much rather teach Tai Chi than psychology! I love Tai Chi. It’s around two years(ish) since I started learning Yang style Tai Chi. As I move into this Chinese new year of the snake I am already learning the Sun style 73 form and finding that two styles and three different routines in my head can get interestingly muddled at times! I’m always glad of new sources for laughter 😉

I’ve spoken with my teacher many times about how much I love Tai Chi, she knows I’m a lifer! I hope to learn some Chen style as well, before learning the competition 42 form which is a combination of all 5 styles (the others being two different versions of Wu style). After that? Well, there’s weapons Tai Chi of course! The sky is the limit. I do not believe in capping our own potential. We do not know what we are capable of until we try. And until we try different things we might not know about untapped skills and natural abilities just waiting there, full of potential… potential joy, potential smiles, potential new parts of our life and being. When we discover something that we really like it can become a well loved hobby or interest that helps us to escape from the stresses and express who we are. We are each ourselves, and finding ways in which we can *be* ourselves is a beautiful thing indeed. It feeds the soul, it lifts us up, it adds quality of life that cannot be measured.

For me, it is Tai Chi which has added a different level of appreciation to my physio’ paced activity time. It is more than a set of movements, it is a way that I am me: time for myself, time away from stressful thoughts and worries, doing something that I wouldn’t have done otherwise, to learn something just for me, to experience progression instead of health deterioration. Even with bouts of regression in health the skills themselves can still improve, I can improve my technique on the bits I can do – when I hurt my back I couldn’t do the arm movements so much, but my footwork came on a treat! There is always a positive for me. Even if I felt that I could not progress any further I would always have the achievement of everything learnt so far, hurdles overcome, improvements made, I would be proud, no wait.. I am proud! I am proud of what I’ve achieved.

Tai Chi on the beach

One moment of practice during a chilly physio’ captured by Magic Dude! It was a rare moment of balance!

Whether it’s a bit of artwork, a bit of writing, or reading, or anything, time for you is essential. And being able to *be* you is the best thing ever. To just be you.

Ill health is but a part of our lives, it’s not who we are. It restricts us, but we can get stubborn-in-a-good-way and still find things we can do during our physio’ time. And it doesn’t have to be physical things either, after all most of our physio’ time is taken up with mundane things like getting dressed or getting some food from the kitchen.

Writing can be done with a headset, reading can be done in ways that mean you don’t have to hold the book or kindle, artwork can be many things, or indeed anything (art is art, it is expression, it is whatever we want it to be). Even studying can be conducted from home through distance learning classes. Ooooh, the possibilities are exciting!

Living with a chronic condition means that we are limited, restricted, we experience flares and set backs, and if we don’t keep on top of that it can take over our inner world as we have to think ahead, and plan all the time. It’s exhausting….. all the more reason why it’s so important to create time for yourself.

We associate Western new year with making resolutions for the coming year, and we also associate resolutions with things that we feel we should do, like go to the gym more, watch what we eat, cut down on our swearing…

Chinese new year has beautiful meanings in the lion dance. It is looking ahead to a new year full of possibilities, scaring away evil spirits and bringing prosperity and luck in the year to come.

We’ve had our western new year, we’ve tried the resolution thing, we feel we’ve failed when we don’t stick to what are often huge steps we’ve tried to take. So let’s take inspiration from the Chinese new year, let’s scare away those negative thoughts and think about what we might like to try. It doesn’t have to be major, it doesn’t have to be permanent, just some things we’d like to try. Not even necessarily now – after that hospital appointment is done with, after this flare has calmed down, whatever it is it should be enjoyable, not pressured. Don’t let that wish to try something get away, just allow yourself to not feel pressured. If it’s something you really want to do you may want to start straight away anyway.

We are more than this – we are each an individual *me*. I, for example, am someone who randomly practices Tai Chi in the local DIY store whilst Magic Dude chooses some paint! Well, I have limited time that I can actually physically function and then the rest of the day is worked around regulating even higher levels of pain, so I’ve gotta grab my chances, right? 😉

Happy new year to you, may it bring you some smiles and some opportunities to try things that it might turn out you love, xxx


If you want to know more about my hobby.. I have written about the health benefits of Tai Chi here.



A jar of joy!

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

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

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

My Jar of Joy at the beginning of 2013

My Jar of Joy at the beginning of 2013


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

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

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

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

christmas hats for the jar of joy

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


Happy New Yeeeaaar!

To you all from me, thank-you so much for visiting, commenting, and letting me know that you’ve found the info’ on this weblog useful. It means so very much to me to be able to share information and experiences with you. I have not been able to write much recently but after March you may well notice an increase in blog posts as dissertation writing will no longer have a call on my sparse brain time!

Creating and writing this blog has been an amazing experience for me. Both from the point of view of sharing info’ with fellow patients, and getting more comfortable about posting my words out in the wider world. This website is my virtual home, the hub from which I branch out and explore. This website says so much about me, but there’s more silliness, more information, more chat and pondering to come. I’m looking forward to 2013’s blogging experience and the 1st birthday of the blog at the end of January. Next year is looking exciting from where I’m sitting (under a blanket with a hot water bottle 😉 ).

Oh yes and whilst sporting some rather sparkly celebratory nail varnish!

Oh yes and whilst sporting some rather sparkly celebratory nail varnish!

So here I am raising my metaphorical glass to say cheers to you all. May you have a bright and shiny 2013 with smiles and magic moments to get you through the bumpier times, and as much tea as a person could wish for! 😉

Love and bestest wishes from me,


My Dream Day…

I started writing this a while ago, before the study deadline crept closer and took up most of my upright-time! So the first part is from before I started my helpful meds, (I’ll write a post on them once they’ve reached their optimum effect, x).

When I awoke this morning it was a good day. Magic Dude kindly brought me a cup of tea and I propped myself up just enough so that I could drink the tea without spluttering. For the first time in a long time, moving from the horizontal to the propped-up did not result in a crazily fast heart-rate. I could sit and enjoy my tea and begin the day with less symptoms.

The day continued to be good when we went to the supermarket, and after 10 minutes I did not experience unbelievably bad nausea. In fact, I succeeded in completing the full food-shopping trip. By the time we were queuing up I felt lightheaded, but waaay less than usual, and I felt nauseous but it was bearable. I could not believe that I was walking to the car aware of my surroundings and of what was going on. I did not need to be guided safely to the car for once.

When we got home I helped to unpack the shopping, I got the laptop out, and then the bad stuff began. I had to crouch down to get the printer, and with near-fainty symptoms that’s really bad idea. Despite moving slowly and carefully, the mere act of crouching and standing a few times resulted in my collapsing into the nearest armchair while some tweeting birdies flapped around my head.

That was it for my good day.

Now, a couple of hours later, I am propped up in bed with my laptop for company.

Now I might be thinking along a wonk here, but this doesn’t sound much like a dream day even for me! Perhaps I need to set my sights higher and get imagining. Oooh, now we’ve opened the field right up! But then again, stuff that seems normal to other people now seems to be amazing to me, so I don’t think I’m the best person to assess what is amazing anymore! Most people’s normal nice days seem just as impossible to me as if I was wishing to become an intergalactic art teacher or something. For me, ridiculous imaginings include going out, going on holiday, seeing the people that I love the most who I have been missing.

So… (writing this a few weeks later after my study deadline has passed 😉 )… first of all my dream day would last at least a week! Yep, it’s one of those wishing for more wishes things, but with an poor attempt at capping it. As if that’s gonna make it any less daft!

I would go to a concert with Magic Dude and I would dance around gleefully without hurting. In fact this concert would be abroad in some gorgeous old town set within some beautiful sweeping landscape which we could explore and hang out together in. There would be an abundance of veggie restaurants in the town that served low-key flavours. (Or maybe my tastebuds would be ‘normal’? Yeah, I like that idea)! And we’d stay in a spacious hotel with a memory foam mattress and a huge bathtub that I could relax in.

I would spend a day doing nothing but art. I think I’d save the drawing and painting and get stuck in to some claywork instead, because that’s harder for me to do these days. Some really big pieces. And maybe create some big gorgeous art critters to lurk joyfully in my hypothetical garden. But wait, I’ve capped it at a week and I’d love to do something crazily physical too, like swinging through trees on ropes (!), or doing some fast martial arts, or trying my legs at long- and high-jump again. Oooooh, so much I’d like to do!

I would have a gathering with my friends. In fact I’d have multiple gatherings. I’d have a schoolfriends gathering, and a uni’ gathering in our old uni’ town where we would wander, natter and revisit our old ‘haunts’. I’d get to meet in person the most amazing international friends who I’ve met online as a result of having my health conditions. And I’d have a big fancy dress party for eeeevryone in some big old country house where everyone could stay for the weekend.

The sun would shine, but it wouldn’t be too hot. The wind would be gentle, just enough to stir our fancy dress costumes and thus any capes. 😉 Any rain would be light, fine, refreshing and brief. I would take an inordinate amount of photo’s which I could frame and display so that I smile every time I see them. Of course I’d have won the lottery, too, so that I could buy a house with walls that I could actually fit some picture frames on without it looking really cluttered! Which would mean that I could also have a garden to put the artwork in, and rooms for friends to stay in when they visit again in the future. As well as really good healthcare, of course. 😉

Ahhhhhhhh. Dream….dream….dream…!


A productive day (and I know where my towel is)!

This morning I looked in the mirror and for once I did not notice the dark circles under my eyes in quite the same way that I usually do. I did not look at myself and have one of those moments where all of the stuff that you’re trying to contend with whizzes through your head in quick succession culminating in a big “Okay then, let’s get on with it” kinda sigh!

No, this morning was all about practicalities. Get downstairs and eat breakfast, rest my legs on the sofa to lessen the pain for a while. Then get ready for my Tai Chi class that doubles up as physio’ for me. That’s when I looked in the mirror. In ‘do-stuff’ mode. Just cover up the dark circles with some magic under-eye make-up and get ready to roll.

I had so much to do today. Or, more accurately, I had a lot to do by my standards!

I had a Tai Chi class to get to, in which I wanted to function as best I could, then I had to get home again (stuck in traffic for a while, ooh that doesn’t help the pain levels), get the laptop switched straight on and set up on my ‘laidback’ laptop stand that I can use on the bed. I had a study deadline to meet today, you see. And so, rather than dwelling on life, the universe and everything, my brain was preoccupied with the two tasks I had set myself today. Tai Chi and emailing off my work for my first study deadline of the year.

Plus the idea in the back of my head that I wanted to write a blog post today, because it is ‘Towel Day’ after all!

Yes, you read that correctly, it is indeed ‘Towel Day’! Those of you who are Douglas Adams fans will be nodding your heads already, of course. And perhaps our numbers have grown a little since the ‘Hitchhikers Guide to the Galaxy’ film release, who knows? (I was raised with the original TV version before I discovered the book. Good old Slartibartfast.  😉 ). There must be a fair few people around the world now who are aware that the answer to ‘life, the universe and everything’ is actually, er, 42!

And on this day, all those hoopy froods reeaally know where their towels are at. 😉

So, yes, all in all in a good day. A productive day. A painful legs day but not so much of a near-fainty day, despite the heat. Next time I look in the mirror I hope to espy a little satisfaction there. Some days we come out on top and fighting.


World Tai Chi and QiGong Day

Every year the last Saturday in April is World Tai Chi and QiGong Day. I’ve been a Tai Chi student for just over a year, now, and I have every intention of continuing to learn for as long as I can. I’m not a stereotypical creaky grey-haired person, or a stereotypical young and fit martial-arty type. I’m blending the stereotypes as a young(ish) creaky person and cheering on any person of any age and any ability to give Tai Chi a whirl if they feel the urge!

Like so many people, I have turned to Tai Chi because my health won’t permit other types of exercise. And, like so many other Tai Chi-ers….. I wish I’d started learning it when I was younger!

Yes, Tai Chi is undeniably good for the older body. As we get older our bodies get a bit cranky and need our exercise to be in more appropriate forms and intensity. Tai Chi fits the bill, and research backs it up inexorably.

However, it is also a martial art, (have you seen Jet Li’s Tai Chi Master? 🙂 ), and can be taken to levels beyond what you are aware of from general urban myth. My tutor combines it with Wushu, (that beautiful but exhausting form of martial arts you see spinning through the Eastern martial arts movies), to create beautiful and yet physically demanding forms. If she wore aaaaall her medals at once she’d probably be hidden from view, she’s that good! Tai Chi can be taken as far as you want to take it and, in my opinion, the further you take it the more interesting it gets!

But for us beginners, there is the standard form of 24 moves which we can learn. It is the form practiced throughout the world, but even as a beginner you don’t have to just stop there. You can if you want, of course. The point is that you learn as much as you want to and practice Tai Chi in the way that it makes you most happy. (And it does make us Tai Chi-ers happy)! But the 24 is not the be all and end all. I’m learning the Yang style 88 form at the moment, and loving it, (despite the crazily fast heart-rate and having to sit down half the time coz my blood pressure keeps trying to go for the fainty option). After the 88… I look forward to learning the 42 which includes moves from the various styles of Tai Chi, so I’ll be learning different ways of moving and varying the speed from a Tai-Chi-slow to a fighting-fast and back again. (There’s videos of the 24 form and 42 form on one of my earlier posts here). But I don’t expect to leave the previous forms behind. They all have their place and take different lengths of time to perform, and they all create greater understanding of the art whilst offering new directions to potter off in and learn more.

I love it…..can you tell?  😉

A rare non-wobbling moment caught on camera! (The kicks don’t have to be high ones, by the way, x)

As some of you will already know, I have been trawling the research journals for papers investigating the effects of Tai Chi on health. I wrote about it in my Tai Chi Glee post way back in February. I haven’t forgotten it, but my health, the writing challenge, my health, the lack of adequate tech’ and, er, the main problematic theme: my health, made it really slow going. So I’ve written a bit when I can, researched a bit when I can, and slowly got there over time. And as today is World Tai Chi and QiGong Day, it seemed the most appropriate day to upload it to the blog.

So here it is….the link to my info’ page about the Health Benefits of Tai Chi….just click here.


Comedy outcome of crossing the loud-music event-horizon

After valiantly creaking home in slow-motion from the asthma-clinic appointment that I’d forgotten all about and therefore not included in my morning physio’ (doh!), I allowed my legs to pretend to be heavy leaden things. I left them to it on the proviso that they were not to introduce manic pain levels because I was ‘being good now’, honest! So I sat at the laptop waiting for my body to get happy enough for me to think more coherently, whilst enjoying a friend’s nutritional advice on the health benefits of biscuits and booze!

I eventually ended up writing about something I enjoy, which keeps my muscles more relaxed and so will hopefully reduce the level of the, now imminent, pain flare-up.


Then… half three in the afternoon….with the sun streaming in, and the open window letting in the fresh air and the birdy/traffic/sort-of-strange-chopping noises from the Urbanised Great Outdoors… neighbour came home and decided to demonstrate their ability to feign hosting a party for stressed out, anxious people with jack-hammers.

It probably sounds like music in their house. And I’m sure they’ve had a long day at work and all…..but…..the bass noises sliced right through my brain! Not because of any migrainey tendencies today, just because it was distracting erratic bass noises interrupting my thought patterns. I had to give up writing.

So….I decided to introduce my neighbour to Machine Head’s latest! Anyone that’s ever dabbled in rawk music should give it a whirl.

I knew it wouldn’t be long before my noise sensitivity caused me to turn it down again but, as I couldn’t stand up or walk at the time, it was a quick and easy way to let them know that someone was at home! They’re a nice couple, we each know how much noise travels through so we just let each other know that we’re at home and it’s all fine. (Unless they’re having a party, then Magic Dude and I end up wearing our best sad-faces and reaching for the ear-plugs).

I surprised myself, though. The sudden change from gentle outdoor sounds to rockin’ guitar had an immediate effect on me in a rather epic manner. I went from being a quiet and responsible blogger, to….

….wearing an idiotic grin whilst attempting a whiplash-flare-avoidance version of head-banging and waving my ‘devil-horn’ hands at the ceiling in grinney-happy defiance!

All whilst stuck in bed, legs totally immobile and buried under both duvet and laptop table!

Yep, I'm probably too old and creaky for this, but it made me larf!

Yes, I am Elle, I live with the Auto Gnome, and I have a problem, hehe…. I lurve my music!

It makes my soul sing, my mouth grin, my eyes twinkle, and I feel all kind-of excited inside my chest whenever I get to turn the music up. Infrequent and rare as those opportunities are. Perhaps that’s why it has such a strong effect!

Once I cross over the loud-music event-horizon the behavioural outcome is likely to surprise anyone unfortunate enough to witness it!

Ahhhhhh, but I feel soooo much better for that! And I’m only on track 3!

Music is good for my soul!

Not everyone likes to rawk, so here’s the chilled out acoustic version of ‘Darkness Inside’. I don’t usually pay much attention to lyrics, it’s the sounds that make me smile, but this one is about how music can fill our souls and set us free. Ahhhhh, x

Of course, if you’re really intrigued about the original version, then here it is….

It’s turn-it-up-and-shout-along material, hehe