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

An informal international network of CRPS patients

When we find ourselves diagnosed with something we’ve never heard of and our doctor seems to be unable to clearly explain what on earth it is, what do we do? Many of us turn to the internet, but health information online is of variable quality, and even more so when research bounds onwards in new understandings whilst many websites are not updated with this new information.

So what do we do then? Who out there has heard of the condition and has some clue about symptoms, prognosis, the whys and wherefores? How many of us actually get to see a specialist in CRPS? I was diagnosed by a very good limb-reconstruction specialist, and I’ve seen some general pain management teams, but never a CRPS specialist.

Another reason we may look online is for someone, anyone, who understands what we are going through, who can reassure us that we’re okay, that’s it’s not ‘all in our heads‘, and that the sorts of stresses and strains which we are experiencing are common for other patients too.

Tai Chi holding planet earth, the world

Of course the nature of the internet means that geographical boundaries no longer restrict who we meet or how far good information can be shared. There is effectively an informal international support network of CRPS patients all helping and supporting each other. And for those of us who find the right groups for our needs and temperament, and the most useful pages with correct contemporary medical information, the effects on us can be positively life-changing.

The impact that this has is that a large number of patients internationally who were previously often isolated and looking for information…. now have access to regular contact and support, and can find research, discuss aspects of the condition, talk about potential treatments and indeed anything that they wish to talk about.

This is one heck of a turnaraound for patient experience.

Heart ornament

An ornament on my mantlepiece from one of my beloved international friends, x

I have met some awesome fellow CRPSers who admin’ in support groups, raise awareness, blog and info’-share as advocates for fellow patients. The slower speed we have to work at owing to our health issues never detracts from my excitement at the potential though. How can I not be excited? – I am part of an informal network of CRPS patients who have professional skills in nursing, pharmacology, occupational therapy, alternative medicine (which is especially important to patients allergic to mainstream medicine), nutrition, research, writing, psychology, counselling, ohhhh my goodness this network of awesome and beautiful-souled people is an absolute treasure trove!

We gravitated towards one another because we recognise each other as determined information-gathering/sharing advocates. There’s no formalities here, we’re just people who got to know each other, liked what we found in each other and we often come together to help others.

Some of the people in the network work hard at raising awareness, sometimes that is through social media, or wider media, or through creating and selling awareness jewellery. Others in the network blog and maintain websites. Some carry out research, and others support that research (sending another moment of thanks to my super-coder, who is a CRPS carer, and to my fab’ coding and statistics advisor 🙂 ). Pretty much all of us are involved in admin’ support alongside the other things we do.

One day I might even dare to go purple, too!

Pause for a moment to remember that these people are so terribly chronically ill, with multiple issues across various systems in their bodies. They often are unable to work because they cannot guarantee being able to work at any given time on any given day. So all this wonderful work they do to help others is done around immense pain and often additional challenging issues such as fainting, severe nausea, the understated brain fog (which one of my friends refers to as full-on London brain smog when it gets so bad that we can’t function!) and this means that it can only be done as and when the body allows. Which isn’t very much. So the amount of time that they battle through the symptoms to even just be there for others says a lot about how much it means to them to be able to help fellow patients.

These are truly awesome people.

And they just so happen to be from all over the world.

Here we are, all over the world but in contact at the click of a button. Magic!

Modern technology, including the rather handy online translating applications, renders geographical distance a mere annoyance. In fact it’s not so much the network of advocacy which is affected, because that works amazingly across time zones, across language barriers, across cultures and more. No it’s really just the fact that we can’t all meet up for teas, coffees and a face-to-face natter that really bugs us about the geographical distance!

The world appears to have shrunk since I met you all! Other countries now feel like they’re ‘just over there’ instead of a whole world away! It’s a wonderful feeling that we are all coming together like this. My own personal world is very much better for you all being in it. Thank-you, x

The love, the gratitude, the admiration, the respect that I feel for these amazing people is something that lifts me on those days where the health issues are more challenging than usual. They’re out there. Kicking CRPS arse! Making a difference to other patients around the world. And when they’re facing a flare-up day they know that I’m still out there doing what I can, too.

The international aspect is a positive boon as the varying time zones (plus all of us who can’t get to sleep!) means that there’s always people out there.. 24 hours a day, 7 days a week, who support, share information and answer questions – who do whatever they can to help fellow patients online.

International post, my initial network

My initial mini network of international friends. We still get together for natters on Skype and regularly communicate in group chats online, these are some of my bestest buds 🙂

Initially I was just me doing what I could to help others. Then I met some fellow patients doing the same and I became part of a group of friends doing what we could to be useful. And as time passes the connections naturally build up. We meet other admin’s during our admin’ roles, we come across other bloggers and awareness raisers when we join in with various photo or writing challenges… and so the network keeps growing. Think of all the little networks, and imagine each network having someone who meets an advocate from another informal network… they get to know each other, and maybe some others in each of their networks do to, and before we know it the network has extended.

I adore the advocates I’ve met, we have the same goal in our heart: to help others. That one thing says a lot about our personalities.. so it’s not surprising that we help each other rather than butting heads! This isn’t business, this is heart, and morals, and ethics, and love. And that crosses international divides without missing a beat. The common denominator is helping others, it’s about being human, about caring. And that steps past any differences that we might have in geographical location, or culture, or the type of healthcare system we have in our country, or even language.

Our hearts are aligned, and we put our heads together to be as helpful as we can.

Every one is a lovely caring soul who I am honoured to know.

And if you think gentle souls can’t be determined then think again, because this is a network of CRPS survivors, many for more than a decade already, so we’re more like a group of cupcake baking, fairy-winged terminators! 😉

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Other bloggers in the network posting today, too…

Yes this very day, the 22nd November 2013 🙂 , some of the bloggers in this informal international network are also writing a blog post on the same theme and we’re all posting to our blogs on the same day. 😀 As each of them post their own articles online I shall add the links below for you. As we are in various time zones and working round health stuff the links will become available at different times so I’ll keep popping in to add more links as they become available, x

Union Jack cup and saucer, full

Representing my fellow patients in the unofficial UK branch 😉

And rather than leave this post solely with UK input from me… there are some quotes below from some wonderful CRPS patients in other countries who wrote a bit to be included in this post between their high pain levels and all the usual deadlines and pressures of everyday life – thank-you to everyone listed below, x 🙂

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Other blog posts on the same theme being posted today…

Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients
Written in both French *and* English, how amazing is this lady?! 😀

Lili in Canada: Love Knows No Bounds

Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels 

Christa in the USA: Support of International Community: Why Do We Need It? 
Christa, with RSD/CRPS Doesn’t Own Me, has also teamed up with the RSDSA this CRPS awareness month to raise awareness and also to raise funds for USA patients in need of financial assistance with daily needs, medical equipment and medical costs via the RSDSA Patient Assistance Fund in Honor of Brad Jenkins

Isy in the USA: International group post: Love is portable 

Sarah in the USA: currently multi-tasking, like the superhero that she is, having a Tilt Table Test today. Rest up hon, hope the results are helpful, xx

Suzanne in the USA: Dancing Through The Fire… AND… You’re Gonna Hear “US” Roar! *an International Affair*
Suzy is also raising money for American RSD Hope, for every dollar donated your name goes into a raffle to win her handcrafted CRPS awareness bracelet. You can see more on her Facebook page and her website
And here’s the wonderful American Sign Language accompaniment to Katy Perry’s song that Suzy referred to in her blog post:

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We may well ‘network blog’ on the same day like this again because we all enjoyed getting together to plan this trial run (by the way, we co-ordinated through Facebook, just in case you’re on there 😉 ), so if you’re a CRPS blogger and fancy joining in just drop one of us a line 😀

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Some input from CRPS friends outside the UK:

“Having CRPS can be very isolating, and when you are living in a small populated country like Iceland that can be isolating too. And when you have a rare disease in a small populated country you are not going to meet many people with same disease that you can share your experience with. So meeting people all over the world online and making wonderful friends has really made this CRPS struggle worth it all. My friends all have different experiences, have had different treatments and can share their experience and knowledge. When you are having a hard time then nothing is better than a Skype meeting with friends or a chat on Facebook. Different background, different culture, different country and different treatment can only bring more to the table and give you good advice. I don´t know where I would be at the moment without the social network, it has been the most helpful thing in my CRPS battle, at times more helpful than any doctor, making my battle bearable and it has kept me going.”

.                                                                                             – Jona, Iceland

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“To be part of CRPS groups on the Internet is really helpful for me. After I got diagnosed the doctors here left me alone. No explanations, no help, nothing. Then met all this CRPS warriors online. They helped me through the first time which was really rough. And I know without them I’ve never could have done it. I had so many questions and they’ve been there for me till now. We’re a group. We’re there for each other. I love it. Whenever I need someone who really does understand me I can go to the group and talk to them. They know what I’m going through. I got my stepfamily who are supporting me but they don’t know what I’m going through because they are not experiencing it. But these warriors, they know it. They’re in it too. When I’m talking about my blackouts, my flares. They know what I’m talking about. I don’t have to explain everything. And I met wonderful people there. Even my best friend! I love her! I visited her. Which was wonderful. It showed me that I’m still able to travel even though I payed a big price for it afterwards. But all these friends I met there….I don’t want to miss any of them ever again! I’m not alone anymore!”

                                                                                              –  Noei, Switzerland

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“I am a Scottish woman, who has lived in The Netherlands for 14 years now. I have two amazing little girls, 7 and 8 years old. I am married to an amazing Dutch man (for 13 years now).

October 2010 at work a colleague pulled my chair for under my bottom. Which caused the tendon in my wrist to become detached. I had surgery soon after. However RSD/CRPS had already started.

I have RSD/CRPS type 2 – I have severe nerve damage from the elbow down to my finger tips in my right arm. The nerve damage caused my arm to decompose in 9 areas and has also caused me to spend 12.5 weeks in hospital in 2013 so far. This has an emotional effect on the whole family and friends.

RSD/CRPS is an everyday struggle I have never had pain below a 6/10 in 3 years. This is also due to the fact that I have rebound effect with almost all medicine for RSD/CRPS. I forget most things, I have lists all around my home for nearly everything, I used to have an amazing memory. I have at one point this year spent 2-3 months crying daily, not due to pain but grief over the loss of my life.

Around January 2013 my husband knew I needed more than my own friends and family and pain doctors, I needed to find others with RSD/CRPS who could understand me. I joined an online support group via Facebook, I can say with all honesty the group on one occasion saved my life and on countless occasions help me through the hard times caused by pain. I have made many friends who are also people with RSD/CRPS. We laugh together, cry together and also learn to express what no other person can understand, the emotional and physical pain connected with RSD/CRPS. I have spent time on Skype with others which is amazing, not just because typing is hard but seeing someone helps so much more than typing a message to them.

Without an international community of people with this pain syndrome I would be isolated still, alone, and so would many others. Thank you to you all, you are all strong, amazing, courageous people.

I hope pain management teams can read this blog and reach out to us all. Together we can fight this RSD/CRPS. However alone I feel we may keep struggling, both Doctors and patients.”

.                                                                                             – Joni, Netherlands

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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.

I think I can, I know I can…

For today’s WEGO Health challenge….

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I think I can get my doctor to talk to the consultant about alternative ANS stabilising meds.

I think I can get my head round some of the statistical tests for the research! 😉

I think I can increase my core stability without nearly passing out!

I know I can get my symptoms level enough for the few minutes required to be able to compete in the Tai Chi nationals next year 😀

I know I can co-write a paper on CRPS

I know I can rest in the knowledge that I’m never gonna run out of tea!

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Magic Dude at Riverside Pk

Magic Dude by the river as I take autumnal piccies

And I can attempt/do these things thanks to the wonderful support, love and understanding from my truly awesome Magic Dude! I never get tired of his company, he makes me laugh, gives me hugs and my heart sings to know him, xx

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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 14

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

Day 14 – A picture of someone you could never imagine your life without

My fabulous brother and all of my beautiful friends and are part of the weave of my life. You all make my life shiner and give me reason to keep on. Today’s challenge says “someone” though, so here’s a piccy of the man I hope to continue traversing life with and eventually grow old with, (body allowing, of course!)… my beloved pumpkin head / Magic Dude! 😉

Ben, pumpkin head

x

New year, new thinking

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

cropped-banner-feb-mar-chinese-new-year.jpg

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

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

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

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

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

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

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

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

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

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

Tai Chi on the beach

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

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

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

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

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

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

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

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

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

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

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

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Life and Death

Today’s theme for the November Challenge is one I may write about properly one day, but for now my level of symptomatic wooziness means that I can’t write for long. So today you’re getting a CRPS and Dys’ related poem, x
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Life and Death

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Older,

Wiser,

Weaker,

Stronger,

One day at a time.

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Finding strength through love,

A pathway through the minefield.

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Patient,

Writer,

Teacher,

Joker,

Rays of sunlight shine.

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Voices lost and present,

Sear and sing within my heart.

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Battle

Onwards,

Fading,

Waning,

I’m ‘me’ all the same.

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No shame in my sustaining,

Shining light throughout the fear.

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x

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