Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

x

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One of those weirdly surreal days

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

I mean really? Whaaa?

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

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

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

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

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

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

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

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

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

On my way out of the hospital I wandered past a clothes shop with ‘SALE’ in large, friendly letters ( 😉 ) and in the window was a dress that caught my eye. So I went in, tried it on, and blummin’ bought myself one. Yes, you read that right, I actually bought myself something that wasn’t ‘necessary’! It wasn’t supplements, or med’s, or compression stockings, it wasn’t even a Tai Chi seminar for extra physio’, it was a dress that I bought for myself simply because it’s pretty. Well it’s pretty *and* purple *and* paisley, so how could I resist?
dress from hospital
Though perhaps it says a lot about my life that I bought it inside a hospital! Hehe
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So, I’d been out of the house twice already that day – once to Tai Chi class (and the shocking news) and once to the hospital. But Tuesdays are called Totally Tubular Tuesdays in this house because I have two physio’ classes that day, yikes! I wasn’t sure if I’d make it to adaptive Kung Fu as well, but Wednesdays are always my rest and recovery day after my tough Tuesdays so yeah, I went anyway because I’m determined/stoopid (delete as appropriate)!
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It’s now been over a week since my teacher scored points for managing to render me speechless (not many people manage that! 😉 ). And the update is that the Championships have now been moved to the UK, so at least I don’t have a plane flight to deal with now, pheweee! That could have blown my pain right off the scale. It’s hard enough competing in the UK with my health conditions delivering their characteristic collection of aftermath problems, but at least I know what repercussions to expect from competing here.
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So I’m in ‘training’. Which actually means that when I have a Tai Chi class I practice with aims instead of ‘just’ practicing! Which I obviously need as I’ve been told that I had somehow turned one of the Chen style parts of the 42 form it into a “sexy salsa version”, oops! So yeah, plenty of work to be done whenever I can spare some physio’ time to practice! And what with the need to eat, wash etc there isn’t exactly oodles of physio’ time available to purloin, but you know I’ll do what I can, as always.
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I’ve said it before and I’ll say it again…. never, ever. ever cap your potential. Live in the moment, enjoy the shiny bits, and don’t ever assume that ill health means that we will live in a perpetual metaphorical downpour forever more. There are always moments to make us smile, however small. I do feel lucky in some ways. I certainly feel lucky to have ended up with such an awesome teacher. But I know that the grit and determination of my paced exercise over the years is down to me, and without it I would not have got to the same level of beneficial effects from that pacing today. I can safely say though that physio-ing at something I actually enjoy takes far less determination to keep at it! 😉
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Much love from the spaced-out blogger recovering from shock and cardiology! 😉
x
UPDATE:
The European Championships will now be held in the UK instead of Latvia. The change in venue has also meant a change in date as it will now be held in April 2015. Which means more time to get over the shock and to get some training in during my physio’s!
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Joyful moments from 2013

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

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

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

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

Jar of Joy, end of 2013

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

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

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

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

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

Outings and Friends: I tend to include eeeeeverything!

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

So this category included things like …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what do you reckon?

Is there anything else I should focus on?

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

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

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

Joooooy! 😀

Sparkling determinedly for the New Year

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

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

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

2013 Xmas nails 1

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

2013 Xmas nails 2

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

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

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

2013 Xmas nails 4

Ta-daaaaah!

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

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

Like this…

2013 Xmas nails 5

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

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

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

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

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

Checklist:

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

Sorted!

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

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

x

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Friends in my laptop and the festive season, xxx

Ah yes, it’s that time of year again! When there’s more to organise, to buy, to cook, more travelling, more socialising, and all whilst in pain / near-fainting / struggling to process information and more.

Too often we try to do everything ‘like we used to’, just to try to join in or make it special for kids and other loved ones. Even sometimes to avoid too much aggro’ from people who we only really see at this time of year simply because they just don’t understand why we seem to look ‘fine’ to them and yet we keep claiming we’re not fine / taking painkillers / going off to have a lie down etc.

Oh the joys of being ‘invisibly’ ill during special occasions! <wry smile>

Thank goodness I have my friends living here in my laptop!  Contact, understanding, humour – they all help us to keep going, especially through the tough times and all the more needed when it’s a tough time that many non-patients just don’t realise is so detrimental to us.

Some of us international buds have swapped addresses, so there I was in the Post Office earlier this month sending cards abroad to some of my international friends. Who’d have thought it, eh? I’ve gone from little lonely me who has trouble visiting friends nearby… to meeting up with friends in entirely different countries (so far we’ve only met inside my laptop but that totally counts! 😀 ).

Anyway, there I was telling the postlady which country each card was for so that she could price them accordingly (after commenting my approval of her very festive jumper of course). As she looked at one of the cards her eyes suddenly lit up and she started telling me about the trip she and her family took to Iceland last year. Her husband wanted to see the Northern Lights so they and their grown-up kids went for four days and crammed so much in to the time that I wondered how they did it! But it was wonderful to have a conversation with a random someone that wasn’t about the weather or something else mundane. Instead it was about one of the many countries my friends live in, and all these countries seem so much closer these days, more ‘real’ somehow than they ever could have before.

So, as christmas is what I will be celebrating here (with a little ‘c’ because I’m not religious, but christmas is a part of the culture I grew up in) I will be resting my legs with Magic Dude’s family around me (with a blanket and a hot water bottle whilst playing ‘Cluedo’ or ‘Snakes and Ladders’ with the nieces is likely) and at the same time I shall have my friends of near and far in my heart…

Knowing that my Icelandic friend will have her favourite dried fish as a treat, hearing in my mind my Belgian friend as she jokes about Belgian fries and beer, sending love to my friends from the Netherlands, grinning at the thought of one of my Canadian friends swapping beautiful hand-made gifts whilst wishing love to all my other Canadian friends, hoping that my Swedish friend actually has TV and internet by then (it’s just not right if she has to miss the christmas Dr Who!), knowing that my Swiss friend will probably awake on Christmas day covered in happy and warm cats, thinking of my French friend and hoping that she’s having a lovely restful time, crossing my fingers that my Australian friends are getting on okay with the different temperature over there, and thinking of my USA friends spending time with their families and pets.

And though this is an international themed post I of course will mention my wooonderful UK friends who all live in my laptop too. I can be sitting here in pain after very little sleep and way too much socialising for my brain to cope with the processing (as is always the case for me with any social gatherings) and yet I will still be smiling and thinking of you all.

You, my friends, are a lot of shining lights in my life that bring joy and peace to my heart. It is hard to express how much I care about each and every one of you, I value your love, your friendship, your happiness, your individuality, more than I can say.

Research shows that connecting with people online is a good and helpful thing, but it doesn’t tend to explore how real, true and deep friendships can be forged both in person and from afar. I feel that the value of the people who live in our laptops, computers, tablets and phones tend to be underestimated. There are real people in here, real friends, and when festivities push us too far there are always friends nearby ..as close as the nearest internet connection. How wonderful it is to know you all, xx

And just in case you fancy a chuckle.. I have created an alternate ’12 Days of Christmas’ song that we can sing alongside all the ‘normal’ healthy people, tee hee. So that we can sing it loudly without obviously singing something different.. I’ve made it rhyme with the original and tried to avoid too many loud ‘s’ noises whilst they’re singing softer sounds. Do you think too much thought has gone into this? 😉

Here’s the original…

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And here’s my version…

12 Days of christmas

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Or you can go for The Muppets way of doing things, of course! ….

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I will be thinking of you all and wishing you well as I do the christmas gathering in the 3D world. Wishing you love, light and happiness (and as low pain as possible this winter), big hug from me,

x

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Informal International Network of CRPS Bloggers:

Some excellent advice from Lili in Canada here: ‘Weathering the Winter Holidays

and from Jo in the UK (this one was posted last winter): ‘Getting Through Yule: Chronic Illness, Pain and the Festive Season

Isy in the USA discusses how celebrations vary around the world and that we don;t have to get swept along with them, we can create our own way of doing things that works for us: Happy Everything!

Suzy in the USA looks at her own loss of family and shares the way she keeps a journal to help her to deal with it day-to-day: A Christmas Wish

It’s health activist nominations time!

Yes, it’s that time of year again. It’s time for the third annual health activist awards when we get to vote for all of our fave health activists / bloggers out there who have made a difference to us patients. 😀

wego-health 2013

I’ve been happily voting for bloggers, it’s so fab’ to get to share the love 😀

All you need to do is follow the link here and add the weblog (or Twitter or Facebook information depending on where they write and post), and click on the award that you are nominating them for. You can do so anonymously if you prefer. When asked for the nominee’s contact info’.. an email, Facebook page or Twitter account are all ways for WEGO to let them know that they’ve been nominated.

Of course if you want to vote for little ole me I would not complain! 😉 In fact some of you must’ve been busy as WEGO Health have informed me that I have been nominated for three awards…. wheeeeee!

You can ‘endorse’ me on my nomination page if ya like. Only one of the awards I’ve been nominated for is showing on there at the moment, though, so here’s the relevant prettification for this post…

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I started by nominating someone for a health geekery award! There’s one blogger who ‘geeks out’ at research even more than I do so I just had to get in there and vote, hehe Go on, share the love people! 😀

x

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Something I didn’t think I could do…

For the photo challenge today…

I wasn’t entirely sure if I’d make it through my studies without the health getting impossible, but if I didn’t think that there was a chance of success then I wouldn’t have embarked upon that final module. So I have to think of something that I genuinely thought that I couldn’t do, which is nigh on impossible for me because I am one of those people who doesn’t believe in capping potential… who knows what we can achieve in the future? The last thing I’m gonna do is assume that I can never do things because then I’ll never try, and that’ll make it true whether it could have happened or not. So there is nothing that I think I can never do. Instead I work within my current health restrictions doing what I can and I enjoy the ride.

I enjoy the ride because living in the present is joyous. Okay yes, so there’s pain and crawling along the floor with my head spinning and such like, but there are also cups of tea, hot water bottles, sunsets that I can see through the window and much more. Why worry about my future? That’s not going to help me right now. Don’t get me wrong do I plan for my future, I just don’t allow myself to worry about it. I could worry about my health deteriorating, but even if I knew for sure worrying would only make the present feel worse. The thing with CRPS is that it is changeable. Change is built into the very fabric of how the condition works. And change can go either way: so some of my symptoms might improve. My pain management is in a whole different world to where it was years ago. My pain and my condition continues, but the way the pain and I dance around one another is more patterned than it used to be, we have a kind of truce. Neither of us is backing down, but there’s an ‘agreement’ of sorts! It allows me to plan for some activities and events that I could not have done in the past. I will pay for it in pain levels, but I plan for that too.

So who knows what we can accomplish in the future? And if that’s the case, why not start now? Losing old patterns of living, active abilities, friends who can’t handle the changes… well, after getting over the initial crapola that creates we then start to think things like… “What is really important to me?”, “What can I do for me that gives my life smiles and personal value?”, “What can I try that might help distract myself from the pain a little bit?”. And that’s when we discover a new feel to life and start creating our own new pattern. Some of us rediscover lost skills or hobbies and some of us discover new ones.

So when asked for a picture of something I did not think I could do, I just don’t think that way. For me it’s about something I did that I never knew I would do, with the emphasis on the not knowing it was in my future rather than not believing it was.

When we start creating our own new way of living within our current (but potentially changeable) conditions of living, it is a process of exploration and discovery. When I started new things (like this blog) I always said that I don’t know where it will take me but it will be interesting following the path and finding out. And the blog has taken me down paths I didn’t know were in my future. (You can see the blog for yourself though, so I guess a piccy of that would be a let down)!

When I was at a physical low a couple of years ago, I had to stop doing my twice weekly physio’ sessions at the gym because the Dysautonomia had become a real problem with trying not to pass out and/or throw up whenever I tried to exercise, and I felt really down about it. I handled it well for the first few months even though I knew I’d have a lot of ground to regain, but after two years it was a real concern that I could not get the physio’ that my legs required to keep to the delicate balance of activity and rest that affects pain levels. To my regular readers – please excuse me for mentioning my beloved Tai Chi again (;-) !) but for those who don’t know… Tai Chi is what I started doing in a slow-mo attempt to get my body doing some different activity twice a week. What I hoped was that it would help me get back to the gym and what I found was that I really enjoyed learning it so I knew that when I got back to the gym I was not going to give up the Tai Chi. That was it, though, the extent of my expectations! I just wanted to learn more Tai Chi and improve over the years. I knew that it would be a very handy health tool for my crinkly years if I could keep it up for the rest of my life, so that was the plan.

Instead, as regular readers will know, it took me down a whooooole different path!

Tai Chi Chinese New Year 2013

I still cannot get back to the gym, but the Tai Chi (thanks to my awesome teacher who saw and nurtured my potential, encouraging me every step of the way) led me to perform at a Chinese new year celebration wearing Professor Li‘s purple silks (passed down from him to student, to student’s student, then loaned to me 🙂 ). ‘Thanks’ to my CRPS journey I’m now pretty good at living in the moment which helps to keep the stress levels down (which helps calm the Dys’ symptoms). From my teacher’s point of view I demonstrated that I performed well under pressure, whereas from my point of view there was no real pressure from an audience coz the bigger problem was keeping my symptoms under some semblance of control! So really I demonstrated that I know how best to work around my condition to get a few minutes of apparently able-bodied performance! Because of this, my teacher took me to my first national tournament (ladies beginners class) where I shocked myself completely by winning gold. Then she took me to a different national tournament a couple of months later (this time a bigger classification group as all men and women were competing against each other) and I amazed myself by winning another gold. It opened my eyes to potential that I didn’t know I had. It’s been the most unbelievable year in the most literal sense because I still have trouble believing that all this really just happened to me!

That’s the thing about potential, it lurks sneakily just off to one side and it has no visible limits, It’s the exciting unknown, and the key is to travel the path enjoying each new achievement along the way because wherever those limits may be.. a) limits can be tested and we can improve, and b) aaaall achievements along the way are to be celebrated.

x

An inspiring friend

Today’s photo challenge is to share with you someone who inspires me when the going gets tough. Living online as well as off it has allowed me the wonderful opportunity to meet people I could never have met otherwise. The number of phenomenally inspiring people that I have the good fortune to know has risen rather sharply these past few years. 🙂

Today I have chosen to mention one in particular. Oceans separate us but we feel as if we have known each other for many years already. One of those friendships where you just ‘get’ one another, where each time we speak it’s like no time has passed, and yet the time between speaking still twangs at the heartstrings. We met courtesy of one of our health conditions, CRPS, so it’s been pretty darn good for something eh?! 😉 We had overlapping friends and ended up being admin’s in the same support group. Some of the admin’s decided to get together in a Skype chat, and that pretty much sealed the deal then and there! Seeing and hearing friends for the first time who have been loving and supporting one another but had never actually met in the 3D world was emotional, but in a good way. There were smiles and tears at the same time. The love, the understanding, the wicked senses of humour, all together in my laptop, right in front of me! It was a turning point for our understanding of friendships up to that point. 🙂 (You’ve met one of these awesome ladies in one of my earlier posts).

They’re my sisters, not by blood but by heart, and there are other friends who I would love to draw into this warm friendship group because their insight, their hearts and their humour would fit in so well. Ahhh, happiness!

Well anyway, there’s this one gal, right? She’s called Lili. She has a big bit of my heart that she’s settled into, and she’s there to stay. She’s ridden the rollercoaster ride of multiple severe health conditions her entire life. And despite the extremes she has had to go through she hasn’t lost her big warm heart, or her deep love and concern for others of any species.

Recently the lovely Lili started a weblog for her book which is in progress. With severe allergies her amassed knowledge of alternatives to chemical medications and anything else that could possibly have allergens in it, from foodstuffs to washing soaps is, quite frankly, phenomenal. Much of it is there in her head for instant retrieval because it is such a part of everyday life. I cannot begin to describe how pleased I am that this book of information and alternative treatments for chronic pain is in progress. Lili’s understanding of chronic health issues from pain to immune issues and beyond is so very valuable, and I am glad that the book will be available in the future for us fellow patients to dip into for insights that can help us.

(I keep saying that I want a signed copy, it’s my ‘excuse’ to meet the author in the 3D world! 😉 )

Whilst the book is in progress Lili is writing a blog alongside it with information, insights, tips and more. The style of writing is easy on the brain and the author very quickly becomes familiar to the reader by her style and trust me – that’s her shining through. There’s nothing contrived about this gal!

So here she is, the one, the only….. Lili …(and a very cute baby goat)…

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You can find Lili’s blog here: The Taming of the Beast, and the piccy is from this blog post.

Burning feet, orthotics, sandals and some magic!

The CRPS makes my feet burrrrn! It starts at my toes and works it’s way up the foot, (usually both feet but the right foot is worse). For a short and bemusing while my feet decided to burn at the big toe and travel up the inside of my foot instead of the usual burning on all toes and travelling up the whole foot. This is a pic’ of my feet being confused and doing the big toe only version on my left foot but burning a few more toes on my right foot!..

Burny feet, unusual

Don’t know what that phase was all about, it’s gone back to it’s usual burning behaviours again now!

If my feet are covered that sets them off and so does friction, so for most of the year I cannot wear any socks or boots. (Sadness as I loved wearing my biker style boots even with floaty summer dresses). I even have trouble wearing light shoes when the weather gets warmer, which not a massive problem in the UK admittedly 😉 , but I want to be able to enjoy any rare glorious weather and get outdoors to do some physio’ walks in the sunshine when it occurs. But the screamy-burning is more than offputting, it’s unbearable.

My problem is that I can’t walk in anything without my orthotics (sculpted insoles to support my high arches, lots of pain in my knees without them), so sunny weather footwear has not been an option for years as the insoles have nothing to sit in. I have to wear shoes and burrrrn! Nooooo!

Last year I made a discovery which I thought I’d try out and see how it goes. I can quite happily say that it’s changed my life! But it turns out that lots of other people knew about this wondrousness already. How did I not know about it?!

Anyway, I should have guessed really. The answer is velcro, hehe 😉

Just like the answer to stopping laptops from falling on our heads, the answer to wearing orthotics in sandals is also good old velcro.

Of course our usual orthotics are pretty thick and obvious, but there are now thinner versions out there which come complete with velcro attachment for the sandal of our choice! I’m lucky that the most supportive off-the-peg ones do the trick for me. I went into a shop which claims to be orthopaedic.. okay, so it’s a shop, but they employ orthopaedics on site where you can have appointments too (yes, in a shoe shop!). I don’t know how good they are but for choosing what works for me it was brilliant. And the ranges of shoes/sandals etc specifically leaned toward the orthopaedic end of the scale – lots of cushioned and supportive footwear in there.

So I crossed my fingers, opened my wallet and hoped it would be worth spending the money. The value was massive. I had got myself a sensible pair of walking sandals and a pair of thin velcro orthotics to allow me to walk in them. I tried them during different physio’s and it took a while to get the best placement of the orthotics but they worked a treat. I was so gleeful to be able to walk in the sunshine without the crippling burning which would make me try and walk in my shoes without my toes touching the shoes, toes all curled in and me walking in a terribly painful manner. Problem solved. I felt like I had a spring in my step, it was wooonderful!

You can see how thin the orthotics are here (not in their best placement in this piccy, though)

You can see how thin the orthotics are here (not in their best placement in this piccy, though)

Once I knew it worked I wanted pwetty ones as well! But cheap ones, purlease! So I discovered these cuties in a sale….

And yes I took this piccy whilst lying down, that *is* the ceiling you can see!

And yes I took this piccy whilst lying down, that *is* the ceiling you can see!

As the velcro that came with the orthotics had already been stuck into my other sandals I just bought a short length online and stuck that in the new pair. Then the other half of the original velcro already stuck to the orthotics would happily stick in either pair of sandals.

When I was next able to physio’ I spent a lot of time looking downwards in glee!

Sandals, looking down alot!

Admittedly this sandal-wearing lark means that I get some funny looks from friends when they notice my purple or grey feet at times when the blood is pooling (good ole Dysautonomia, eh?!), but oh well. Tis a topic for conversation mayhap?! 😉 My feet are happy! 😀

x

Photo Challenge for CRPS Awareness, Day 23

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

Day 23 – A picture of awareness/creativity

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Creativity is a great way to focus my mind away from pain and other symptoms. Awareness is both a different ball-game and the same ball-game depending on how I look at it…

Awareness of the joy in creativity, and of it’s use as both a distraction tool and as an uplifting tool is great. But the bigger awareness of who we are, and how we are still ourselves despite the changes in our lives, well that’s the shiny. 😀  As I said in a recent post, I decided to be as me as I want to be. Yeah so I’m chronically ill and I can’t do the stuff I used to do, but that makes me no less me. That was about what I did, this is about who I am – I can still be in the world, live my life, love all of the amazing people I have met in the world and online, share thoughts, share laughter, I can still be creative even though I can no longer do pottery, and even though painting is such a mega pain fest to do too often. I can be creative in my head, in silly conversations, on the laptop when I’m up to it, and even the occasional silly sketch for the blog.

Yep. My awareness that floats me onwards through life is that I have my world, my life, my skills, my love… all that I choose to do and all that I choose to be is in my hands. And although what I can do is restricted, that’s okay. It doesn’t stop me from finding ways to express my ‘me’. It doesn’t stop me from being who I am.

So here’s a pic’ that was taken during a Tai Chi-ish moment in the British Natural History Museum in London. For me it was a creative moment, but it also says so much more to my heart.

Tai Chi holding planet earth, the world

Being true to myself is about who I am on the inside, what I think about, what I feel, how I express myself, who I share my thoughts with, how I still try to be there for others. The question of whether I can still milk a cow, or do an accidental wheelie in a little Massey Ferguson tractor, or do a cartwheel down a quiet aisle in a supermarket is nothing to do with who I actually am. I did that stuff, they are expressions of who I am, and the memories make me smile, cool eh? Now, onwards… I’m creating new memories to add to the old… tea with a beloved friend, a silly conversation, a physio’ class I enjoy, some handy research shared with fellow patients that helped somebody out, a silly pic taken at the Natural History Museum the day before seeing a consultant….

My own personal world is in my hands, and it shines 😀

x