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! 😀

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Raising CRPS awareness: ‘adverts’ and Crazy Sock Day

In the UK our TV adverts are meant to sell things. They aim to get us viewers to spend money on products, send money to charities or spend time watching certain programs.

So imagine our puzzlement when we come across fellow patients online talking about ‘adverts’ for illnesses! Our context is that adverts are to sell stuff, and our minds immediately boggle as we wonder what on earth someone would ‘advertise’ an illness for? I mean, who goes shopping for health conditions?! 😉

Well yesterday I fiiiinally found out what these are. They’re more like public service announcements delivering a snippet of information on a specific condition. They can’t squidge much into such a small space of time and, let’s face it, CRPS is so complex that a day at a conference wouldn’t cover it. So they have to go for a bottom line as the potential identifier. The RSDSA has done just this, the bottom line is that if we’ve had an injury with a disproportionate amount of pain then bear in mind CRPS. Here’s the new CRPS info’ video…

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And yes, it is Crazy Sock Day today, and I am wearing some knee high stripeys in honour of Melanie’s awareness day for CRPS & Gastroparesis. 😀

Crazy Sock Day 2014

And here’s the crazily socked feet of some friends as well….

Rory's Fbk offering

Jona's Fbk offering

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Happy Crazy Sock Day people, please do visit Melanie’s Facebook page and feel free to post sock piccies on there in support of her awareness event, 😀

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

Festive physio’ stole all my spoons!

I’ve spent some of my physio’ activity time decorating tree #1….

Xmas tree 1, 2013

Aaand tree #2 aka Treebeard (who has surprisingly made friends with Emo Spiderman)….

Xmas tree 2 (Treebeard), 2013

Of course, after using up available activity time other things tend to pile up a bit….

Tea bag pile

Tee hee

Merry December peeps, may you be cosy and smiley 🙂

x

(Spoon ref’)

Introducing Signage Seymour (and a wobbly guy)

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

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

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

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

Original

Signage Seymour with his original sign

Har!

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

Signage Seymour, awareness pic 2013

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

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

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

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

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So it looks like my mascot is…..

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

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

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Wolverine Weeble

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

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

CRPS awareness month, 2013

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

Photo Challenge for CRPS Awareness, Day 29

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

Day 29 – A picture that can always make you smile

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Pictures that make me smile… ooohhh, lots of piccies make me smile. PIccies of Magic Dude, of my friends, of my Bruv and his girlfriend, of Magic Dude’s family.. they all make me smile. 😀 Even the pictures of those who I have lost from my life make me smile at the happy memories from before the health took it’s toll that way.

I also create piccies that make me smile. I don’t mean beautiful photography… my wheelchair based ways of point-and-click-then-crop-it-later are really ingrained still! I often take silly pic’s, usually for the blog, including some not yet posted. They make me smile when they’re being taken more than afterwards mind you. There’s something about posing for some bizarre pic’ outside in full view of my neighbours which make me chuckle, tee hee.

Today I spent my physio’ time attending a practical seminar on Tai Chi with sword. I’ve never done any sword work before so I’m a total newbie at it. The uncontrollable variable seems to have been the arrival of the swords at martial arts HQ…. they didn’t arrive in time. So our teacher valiantly taught us with what we had to hand in the gym – some short poles. Rather than borrow one of the poles to practice with in the meantime I realised that it would be better to practice with something longer. There are moves where the sword touches the back of the arm and/or shoulder, plus the different lengths feel different to work with. So I looked in the footwell of the passenger side of the car and there was my inspiration….. my fold-up walking stick! Hehe

So here’s my latest silly pic’, it made me smile when it was taken and maybe it’ll pass a smile onto to you as well. 😉

Tai Chi Walking Stick

Please imagine that my non-sword elbow is actually at the same height as my non-sword shoulder! (- I always notice the wrong stuff when I look at piccies of my Tai Chi). But hey, I guess I am a sword newbie…. plenty of time to brush up on technique yet! 🙂

So there you have it, Walking Stick Tai Chi. Maybe this is my new Yoda style?! 😉

x

Photo Challenge for CRPS Awareness, Day 26

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

Day 26 – A picture of laughter you gave to another

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Hmm, tricky. Our individual humour varies, and the event that causes the laughter tends to not get caught on camera. I tend to share silly pictures on social networks that make me laugh because it may make some of my friends laugh too. I have daft conversations with Magic Dude and we each come out with responses that make the other laugh. Sometimes I’ll take a photo’ of something that I find comical or bizarre and share it. So here’s an example of one of those, this pic’ is of a random chuckle moment that I shared online…

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Marvel Avengers Ass

The mind boggles!

In fact this film experience was a wonderful sharing of laughter and enjoyment with the rest of the audience. So much so that I wrote a post about. 🙂

x

Photo Challenge for CRPS Awareness, Day 03

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

Day 03 – A picture of something that makes you laugh

What keeps me laughing is having a view of life which is skewed towards the silliness side! I like seeing the funny side of things, and that includes the funny side of my condition and the bizarre things I find myself doing or saying sometimes, as well as having silly impromptu conversations with friends to make each other chuckle, laughing at the way the world is portrayed through amusingly stereotyped adverts, laughing at any opportunity, really ;-D

Laughter is one of the things that carries me through and silliness can help to facilitate that. So here’s a pic’ of a moment of silliness before ‘planking’ got dangerous and it was just daft people like me playing ‘The Lying Down Game’ 😉

Lying down game

x