Inspiring addition

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

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

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

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

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

Inspirational cushion cover

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

What inspires you?

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

x

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.

Inspiration

The online Facebook community of CRPSers has recently been asked to write their own inspirational stories for possible inclusion in an “Inspirational CRPS Story Book”. I chose to write about the Tai Chi rather than the academia simply because physio’ is a need that we all have as a crucial part of our pain management, and the possibility that it could be less of a chore and more of a joy is pretty darn cool! 🙂

I have been advised by the lovely lady putting the book together that it’s fine for me to post this on my blog for my readers to see. So this is what I wrote….

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Inspiration is one of those words that won’t be pinned down. You can’t point at it and say “see, look… that is an inspiration” in the same way that you could point out a chair or the colour lilac. Okay, well you could point at something that you find inspiring and say that, but the person you’re talking to may disagree, or they may feel inspired in a totally different way.

And it’s not only a personal thing, it’s also an out-of-the-blue thing. When we feel inspired by something it is usually something that happens in a moment, or it’s crept up on us somehow and we become aware of it in that moment. It is a response that involves our emotion through personal interpretation. It often links in to our own joys and pleasures in life, our dreams, our morals, our hopes. Maybe we saw a picture that we found inspiring… perhaps it made us feel good about the world and want to do more good ourselves, or it inspired us to paint, or move home, or phone a friend that it reminded us of. Inspiration can come from anywhere and at any time because it comes from within. It is often sparked by something external, something we’ve seen or heard perhaps, but it can also be sparked from within – our own thought process can lead us to inspiration. Inspiration is so wrapped up in who we are and how we interpret what we see, hear and feel.

If someone says “you should try this…”, it’s not inspiring on its own. But if it sparks your interest, gets you intrigued, makes you feel inspired to do it, then that’s a different thing altogether from just trying it because someone said that you should.

If we are inspired to do something, if we are interested, motivated and involved in what we’re doing, then we are also more likely to see it through. Mind you, I say that as someone who keeps trying to find the time to get back into my artwork but failing to see it through. It’s not that I’m not inspired so much as that I don’t set aside time to allow myself the enjoyment of it because it takes up valuable activity time which I usually need to complete mundane tasks like cooking or washing dishes! I know what I want to paint, I just keep ending up crossing other things off my ‘to-do’ list instead. Being inspired is one thing, but making time to enjoy that inspiration is a decision that is easy to push away. I know from personal experience!

Just about two years ago as I write this I was inspired to continue with something new. Starting it was more owing to necessity, but feeling inspired to continue, now that’s the magical bit!

My CRPS story is a long one so I will not recount it in any length. It’s been nearly 14 years since injury and onset as I write this. It took 6 years and many medical roundabouts to get a diagnosis, and with no medical support or knowledge of the condition whatsoever it took me about 10 years from injury before I began to find out that it is much much more than ‘just’ the second most painful condition known to medical science (after terminal cancer of course <3). So suffice to say it includes screaming pain, wishes of no longer existing, loss of friends through their inability to cope with my new reality, having to give up work, using crutches, a wheelchair, lack of food and nutrition through inability to shop/cook/eat, waving goodbye to my future career that I was working so hard towards, severe muscular atrophy, and even loss of family once the autonomic and neurological changes hit their fastest downward slide yet.

I could bore you with details. But if you’re a fellow patient then you know the score already, and if you’re not then I think this book will contain enough detail already. Living with a progressive health condition strips away your former life and even many of the people that were in that life. It leaves you with nothing but yourself, and it is easy to wonder where even that went until we begin to separate who we are from what we used to do and who we used to know. I was me when I was able-bodied and pretty healthy, and I am still me now that I am chronically ill and disabled, it’s just the way that I express my ‘me’ which has changed. ❤

So, I started a class more owing to need as I had been unable to continue with any gym physio’ sessions for two years since my additional autonomic dysfunction issues had set in (a common co-morbidity in CRPS patients). The lack of gym physio’ was taking its toll on my body and the extent of symptoms and two years of backsliding whilst continuing to deteriorate made it clear that I wasn’t going to get back to the gym anytime soon. My boyfriend came home one day with some information about a Tai Chi class that had recently started up at the gym that I was still a member of.

It made sense to try it. I’d always wanted to learn a martial art and Tai Chi is a slow-mo version! And from a physio’ perspective it ticked a lot of boxes – gentle, slow but weight-bearing and it is good for balance, core stability, leg strength, confidence of movement, stride length etc. All good reasons to give it a whirl. So I went along and tried it. And I really enjoyed it. The teacher was also trained in fitness as well as having seriously good qualifications, experience and multiple trophies from around the world. I fell on my feet there and no mistake!

I loved the first lesson and I felt inspired to continue. The more lessons I attended the more inspired I felt. I found that Tai Chi is harder to start off with because that’s when we’re learning the basics, and as I took on board more of the principles of how the movements worked the easier and more enjoyable it got.

It no longer felt like it was the ‘other’ option to my usual gym physio’, although initially I was hoping that I would still get back to the gym eventually. Not that I would have given up the Tai Chi, mind you. It even turned out that I’m not half bad at it.

So here I am just over two years later and I now have two national gold medals at beginners level for my Yang style Tai Chi! I am currently learning Sun style and sword Tai Chi as well. I adore my new physio’s and intend to keep at it into my old age as the longer I can remain active the longer I can better manage my pain levels into later life. I would love to still be able to do a slow mo’ crescent kick in my old age! 😉

The Tai Chi classes were cut at the gym so, seeing as the only class I attended there anyway was Tai Chi, I ended my membership there and moved over to my teacher’s martial arts club. Next year I’ll be at intermediate level and I fully intend to compete again at the nationals because a) I enjoy it so much, b) it’s wonderful to achieve something when so much of the time I am so limited and c) I’m proud to be performing Tai Chi amongst able-bodied competitors despite being chronically ill and only having small amounts of physio’ time in which to do it.

Becoming ill and becoming disabled takes so much away from us, but I’ve found that what it has really done is allow me to explore another skill set that I never knew I could have. We can achieve so much more than we realise. The key is trying something out and seeing if it inspires us. Sometimes it can open up a part of what makes us who we are that maybe we thought we had lost – there it is after all, it was still there all along,… I am still me in this new form.

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Tai Chi National medals, 2013

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If you’d like to write your own inspirational story, or perhaps a friend or family member would like to do so,… yes, I did say that… whether you are a CRPS patient or a friend or family member of a CRPS patient then feel free…. all stories are welcomed and 50 of them will be published in the book (you can choose whether to be named or anonymous). Here’s the Facebook page for the endeavour… https://www.facebook.com/InspirationalStoriesForCrpsRsd?fref=ts and email your story to RSDCRPSInspirationalStories@yahoo.com

No story is not worth telling. And writing this doesn’t have to be a daunting task because it is simply a chance to write about something which has helped you through. Maybe something has inspired you to keep at a hobby, or keep up with the physio’, or perhaps to study, or start something new, or…. Maybe you are a friend or family member who wants to write about how what inspires the CRPS patient that you know, or how you are inspired by them / their attitude / their determination / …, or how you think that they inspire others… and so on. Whatever it is, there is someone out there who will be inspired by your experience, and that’s what it’s all about, x

The key theme is ‘inspiration’.

Flex your typing fingers people, or get your favourite pen out, and have a little jot-stuff-down moment. Don’t be afraid to write, it’s a wonderful experience, and there will be an editor on hand so if you’re nervous of the brain fog kicking in or the kids/pets/postie interrupting your flow, don’t worry – it’s the story that’s the important bit, not how you write it, x          😀

I’d love to hear your comments below. What do you think of this post, of the opportunity to write and share for the book, of the book idea itself… anything, I’d love to hear your thoughts. Big loves from me, x

Photo Challenge for CRPS Awareness, Day 16

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

Day 16 – A picture of someone who inspires you

As a chronic health patient it is now par for the course that I meet even more inspirational people to add to my list of ‘wonderfuls’ from over the years. There’s something about getting dealt crummy health that makes us fight harder, find the silver lining or, if it’s well hidden, create our own flipping silver lining! 😉

Today I choose to mention a fellow blogger who applies her love of science, her medical training, her experience living with CRPS and her superbly creative and wonderfully active mind to the big jigsaw puzzle that is CRPS.

Many of us live with the condition, many of us try to find out ‘what is what’ to help us work with our doctors to figure out how to treat our individual version of the complex disease. A number of us work to share the information we find to help our fellow patients, whether through friendships, support groups, blogging, information groups or websites. Not so many have the background, the determination and the sheer ‘non-specialist’ cheek to try to help unravel the mysteries of CRPS themselves. But, as I said in a previous post, is it exactly what is useful in what is effectively an informal, multi-disciplinary, international think-tank.

The blogger in question is Isy Aweigh. And she is one of those with the high level, expert-patient savvy and determination. One of those valued thinkers, and extra special for her loving heart. In short, she’s pretty darn fab’, (but seeing as she’s my friend perhaps I’m rather biased 😉 ).

She is fab’, though! 😉

Anyone who’s visited my blog before probably knows about my penchant for Tai Chi, and possibly even seen my post about my last tournament and what it means to me as a chronically ill patient. I tend to set my sights unreasonably high to see where I can get to, rather than set my sights lower and risk inadvertently capping my own potential before I’ve even tried. Well, Isy has done the same on a mega scale, and whatever the outcome is she will learn so much about what her body can be capable of, what treatments / recuperation techniques etc work for her body. And whether she marathons her way to the original goal, or whether the goal morphs into something different to accommodate new health info’, the experience will be a huge personal journey and deserves loud enthusiastic applause every step of the way. I for one shall continue to read the inspiring exploits and insights of my treasured friend.

Here she is, the one….the only…Isyyyyy Aweeeiiiggghhh….. (and Ari the cat 🙂 )…

Ta-daaaah!

This piccy is from Isy’s blog over at Living Anyway.

(Love ya, chick, x)

Photo Challenge for CRPS Awareness, Day 09

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

Day 09 – A picture of gratitude in pain

Today I attended a Tai Chi fundamentals seminar during my physio’ time to brush up on my basics and hopefully improve some more. A seminar is longer than my physio’ time so of course I hurt a little more than usual afterwards, but now I am under the blanket on the sofa with my hot water bottle (back in it’s fluffy cover again!) and I’ve just drunk a nice cup of tea.

I plugged in the stereo before I sat down and I have the volume down really low to allow me to listen for a little longer before the noise sensitivity pain makes me turn it off. My music is on shuffle so I am getting a variety of tunes from different genres which is rather fun. For lunch I’ve eaten some fruit and some cheese (the latter to help my brain recover from the seminar). The sun is shining outside and trying to shine in a little through my overhung front window.

I am grateful to be able to spend my physio’ doing something that I love, and to be able to spend the time that I need to recover afterwards. I have my laptop with me, and that means that I have my friends with me too (as that’s where you all live)!

I am sat so that I can see the mantlepiece. On it are some photo’s, some postcards from friends who are also of compromised health and it means so much to me that they took the time and effort to write to me, a congratulations card from a friend about my Tai Chi progress and I love her so dearly that I haven’t been able to bring myself to take the card down yet, and a beautiful heart ornament from another friend who I love so very much. The ornament represents the beautiful friend who sent it to me and, by extension, my besties who I adore so much. Just seeing it there makes my heart swell in the joy of love for my friends. I am so grateful for you all being in my life and for being who you each are. Each day I am stuck on the sofa for many hours at a time, and each day my gaze will fall upon this ornament at some point and doing so I feel lifted, I feel lighter, I feel grateful. Thank-you my friends, and thank-you to the specific friend who sent this to me, you are always in my heart, xxx

Heart ornament

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Photo Challenge for CRPS Awareness, Day 06

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

Day 06 – A picture of something you’d love to trade places with 4 a day

Oak tree, full

An oak tree on a warm Spring day, preferably in some beautiful countryside with other trees to hang out with, wildlife flitting about and some gorgeous views. Perfect!

Oak tree, branches

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Thank-you ‘Blogging’ for choosing to feature Elle and the Auto Gnome, x

Thanks you lovely peeps at the ‘Blogging’ for featuring my blog yesterday for your ‘Featured Blog Friday’. It was lovely to be acknowledged, and with such lovely and encouraging words, too. 🙂

I shared the link to my blog with the words: This blog exists to help support fellow patients of two conditions very poorly understood by doctors and often misdiagnosed and mistreated.

And ‘Blogging’ said:

“Thank you to all who have entered for a chance to be #FBF [Featured Blog Friday]… This Friday’s winner is… elleandtheautognome.wordpress.com. Filled with insight and humor, this blog is worth reading and our #FBF!!…about living with CRPS and Dysautonomia and finding joy through it. How informative and inspirational!!”

How lovely are they? *glee* They even told me that they appreciate my optimism in a most commonly difficult situation and admire the “silliness” I write about. “Stay strong, stay smiling, and keep blogging!” Darn tootin’, I will! 😀

I’ve said it before and I’ll say it again…. silliness rocks! Thanks guys, It was so lovely of you, x

Elle and the Auto Gnome

My CRPS journey to happiness

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

Guffaw!

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

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

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

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

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

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

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

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

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

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

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

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

Elle and the Auto Gnome, Tree of my CRPS experience

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

Lotsa love and happiness from me,

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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