CRPS Awareness photo challenge: fear and coping

Today’s challenge is to post a quote which has helped me cope. This little gem of a quote is from the book ‘Dune’ by Frank Herbert.

Fear is the mind killer

It gives us a choice in the face of bad things. We don’t have to accept being flattened by our circumstances. Changing our response to fear gives us back some control. We can feel our emotions but we don’t have to be overwhelmed by them.
The kind of life changes that result from chronic ill health have been described as a kind of drowning.

This quote suggests we can get through this. And we can. 💜

x

Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

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P.S. Here’s a version in multiple languages. Just because. 😉

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National Poetry Day in the UK

The Now

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I’m having a transition

I don’t feel quite right

It’s not bad

It’s just…

The full extent is not yet in sight

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I’ve tried to put it into words

But they only show the edge

The words are right

The truth is there

But I can’t see past the ledge

So

What I think is happening

Is only half the tale

Or less maybe –

I just don’t know how deep the scale

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I think I’ve passed another milestone

Or I can feel it by the way

I yearn to peek

And see what’s what

But a day still lasts a day

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I cannot rush to find out

I can only live each day

The Now

That’s when I like to be

No peering in the grey

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This trembling within myself

Has not yet reached my brain

The body knows

But I do not

And

I must not entertain

Speculations

That might not help

They are not my realm

The Now is home

The Now is mine

And I am at the Helm

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x

Joyful moments from 2013

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

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

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

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

Jar of Joy, end of 2013

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

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

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

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

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

Outings and Friends: I tend to include eeeeeverything!

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

So this category included things like …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what do you reckon?

Is there anything else I should focus on?

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

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

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

Joooooy! 😀

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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Three quotes, possibly not the sort you’d expect!

WEGO Health’s challenge for today is to post my three favourite quotes. I don’t think I could pick just three faves though! There are different quotes that I appreciate during different times, emotions and situations. I could get all deep and meaningful with my choice of quotes, in fact I’m going to… just not in the quite the way you might expect!

So that’s set the scene 😉 …. here we go….

Here’s a snippet about Magrat Garlick, who grows and becomes over several books. It turns out that she’s one heck of awesome when the day needs saving!

Terry Pratchett - about Magrat not getting walked over any more

This is written with humour of course, I’m not suggesting that we shouldn’t be good mannered. But the underlying emphasis is bang on – we have the right to speak up if we are being treated with disrespect. We have the right to live life as ourselves….

You are your own unique self. Be you….

Neil Gaiman - everybody has a song

Live your song, x 😀

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And here’s a few wise words from Nanny Ogg about letting go, xx

Nanny Ogg - passed a lot of water since then

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Oh all right, so I admit it, Nanny Ogg’s quote is rather a favourite of mine!* 😉

Much love from me, x

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*For anyone around the globe who is not familiar with the english proverb this last daft (and rather adorable) quote is based on..  “It’s all water under the bridge now” means that the topic being discussed is in the past and that any emotions involved with that topic are also in the past. It’s often a way that one person will let another know that all is okay now. Of course Nanny Ogg’s misreference to weeing is most likely done on purpose in a totally innocent way whilst she has a cheeky laugh on the inside! 😉

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.

Photo Challenge for CRPS Awareness, Day 28

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

Day 28 – A picture of your pain hero

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My fellow patients are my pain heroes – each of you are phenomenal.

To combine a piccy of my fellow patients means combining varying aspects of life.. some have kids, some have a pet, some spend time connecting with and encouraging others through the woooonderful internet, and more besides. This picture is not what any one of my pain heroes does, but it is intended to represent some of the things they somehow manage albeit in small chunks of activity. And it also represents the lack of ill health apparent to others. Most healthy people would have no idea that anything is amiss in this pic’. All seems well and the girl is even smiling. But we know what the girl in this pic’ is feeling.. the pain levels, the vibrations from the kiddy-feet thrumming on the back of the sofa, the weight of the laptop on the legs, the fact that the superhero suit is round the corner and just out of reach! 😉

my pain hero!

What you, my heroes, deal with day to day is indescribable. And you’re still you. That totally rocks! You totally rock!

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

Photo Challenge for CRPS Awareness, Day 18

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

Day 18 – A picture of your CRPS

This is the sort of challenge that would end up with many patients posting pictures of their CRPS-affected limbs during flare, but I find that just wouldn’t even begin to cover my CRPS issues. There is not much about me physically which would suggest a depiction of chronic ill-health. I could grimace at the camera though I suppose! 😉

A picture of my CRPS would mean many different aspects of the condition and its/my co-morbidities,.. the effects on me personally and my life practically, the losses, the insights… oh yes, insights… don’t for a moment think that having CRPS means that nothing good comes out of it. I mean, sure, it’s horrific. I wouldn’t wish this upon my worst enemy, (even if I had an enemy!), but if there’s one thing that living with a chronic illness gets you to do, it’s to appreciate the little things in life. To learn more about myself than perhaps I would have been forced to otherwise. Just how strong am I? Well, I’ve got a much better idea these days. How determined am I? Can I ever regain that childlike love of the little things? What is truly important in life? These things are paramount when living with a chronic illness.

So a ‘picture’ of my CRPS is not just darkness and loss, and it’s not some amazing epiphany either, it’s a balance of all things. A precarious balance at times, but a balance nonetheless. CRPS is part of my life in a foundational way, but that doesn’t mean that’s all there is. A foundation is to be built upon. Admittedly this brings to my mind the snippet from Monty Python and the Holy Grail….

When I first came here, this was aaaall swamp. Everyone said I was daft to build a castle on a swamp, but I built it all the same, just to show them. It sank into the swamp…. So I built a second one…. That sank into the swamp. So I built a third…. That burned down, fell over, then sank into the swamp. But the fourth one stayed up. And that’s what you’re going to get, Lad, the strongest castle in all of England.”

Yeah. There’s something about having to build on a naff foundation that makes us strong! 😉

So here’s another creation of mine… my picture of my CRPS.

Yin and Yang representaion

Good ole Publisher helped me with this creation, plus my christmas pressie of the Xara photo and graphic designer program which allowed me to cut circles out of a couple of my photo’s and add them in too. I am disproportionately proud of the little circles of tablet and Tai Chi medal as a result, hehe.

x