Housewifey organisational dilemma (where’s my birthdays book?)!

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I cannot find my ‘birthdays book’

No matter how often I look

Searching high and searching low

In every cranny, every nook.

Still going back to the place

Under the stairs, the book-shaped space.

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I’ve had that book since in my teens

It’s hard to say how much it means

Cat paintings on each other page

The people met at every age

Now I want to note down dates

Of the special days of my new mates

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I’m jotting dates on tea-stained paper

Which may seem a random caper

But I think –

“It’s got to turn up soon

It can’t be far

It’s not immune

To being found

Ere the blue moon”

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“Or is it??”

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Missing Birthdays Book

x

Photo Challenge for CRPS Awareness, Day 23

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

Day 23 – A picture of awareness/creativity

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

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

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

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

Tai Chi holding planet earth, the world

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

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

x

Awareness ribbons

Remember that post I wrote ages ago about how  many ribbons can happen to represent each of us chronically ill folk?! Well, I’ve got some more to add to my ribbon prettification list now!…

purple-ribbon I now get a purple ribbon for migraines. I like purple! 🙂 But not migraines 😦

Each ribbon tends to stand for multiple conditions and I didn’t realise until recently that this colour also covers my throbbing-head-flashy-light-stagger-away-from-all-light-and-noise issues!

I also didn’t realise that my tendency to migraine over and over (once I’ve had one migraine I’m reeaally prone to them for several weeks afterwards, and the longer it’s been the safer I am) is what is referred to as cluster migraines. I found out during one of my UK disability assessments. So I guess really I should go all out and overboard with colour and add the recently created ribbon for chronic migraines…

Chronic_Migraine_Ribbon_2

Ahhh, instant prettification, right?! 😉

My awareness ribbons

Pretty!

x

Patient contact and self-advocacy on Social Networks

When it comes to social networks, Facebook stands out for me for two reasons:

Firstly, I am chronically ill and don’t get out much. I don’t get to see my friends unless they come to me, I don’t have colleagues to say ‘hi’ to each day, I don’t even have a pet to hang out with. I do, of course, have a Magic Dude! (that’s my boyfriend, for those of you who don’t already know 😉 ). His presence gives a whole new dimension to my life, for which I am most appreciative (a massive understatement, of course)! I also have a brilliant and supportive Local Friend, who pops round for tea and a natter every now and again. (We really must drag him out somewhere for his belated birthday celebrations)! But on the whole I just don’t get to see most of the people who I care about so much. And unless I’ve got an appointment with a medical practitioner who I haven’t met before, I tend not to get to meet new people either. So Facebook as a ‘social’ network is all the more meaningfully named for someone like me who just doesn’t get to socialise in the ‘real’ world any more. Facebook is my lifeline and my laptop is my window on the world.

Secondly, Facebook has a more direct effect on my condition, knowledge and treatment….

My condition is so complex and multidisciplinary that many medical practitioners do not know anything about it. Those who do know of it, tend to know it from the angle of their own discipline and thus do not have the broader multi-systemic picture. I therefore have had to become my own expert. I have had to acquire multidisciplinary information on my condition to be able to share it with practitioners to enable a clearer overall picture, better understanding of what is going on in my body and a better platform of knowledge from which to discuss symptoms and possible routes of assessment and/or treatment.

This would be a darn sight easier if I wasn’t a patient alone, searching the internet, only to find that information on CRPS is mostly limited to the view that it is a chronic pain condition to be treated as other chronic pain conditions. When we are new patients with no doctor to ask questions of, many of us turn to the internet, (a paper is being written on this, I’ll let you know when it becomes available). The trouble with this approach is that health information on the Internet varies in quality, (Morahan-Martin, 2004). As research moves forward the understanding of this complex condition changes and grows. There are old views of CRPS which are now obsolete, but they can still be found on the Internet as if they are current – there is nothing to tell us otherwise. A good example of this is the renowned ‘stages’ of RSD / CRPS which were discarded back in 2004 (see this page for more info) but can still be found all over the internet as if they are still thought to be relevant. No wonder so many of us learned to distrust information on our condition on the internet and instead turned to research journals to be sure that what we find is actually current.

This is where Facebook comes into its own for us patients. So many of us are already on the social network that it is very easy for us to run a quick search for one of many CRPS support groups on there. Anecdotal evidence suggests that CRPS support websites outside of the social network have become far less used as Facebook use has become more prolific. Nowadays this is where many of us patients finally get to meet each other. Even if there were more of us within visiting distance we would still find it easier to meet online as there are many days where even getting to the bathroom is outside our visiting distance! So modern social technology has brought us together.

On Facebook we can meet. We can feel reassured we are not alone, experience empathy from others about our condition experiences, we can share information, including research papers to show our doctors, and much more. Through discussing our thoughts, ideas and understandings of our condition online with fellow patients, who also have gathered a large amount of knowledge on the subject, we can refine our understanding, our ways of working, and find oodles of encouragement to keep on going. Whether it’s to get through physio sessions, benefits assessments, relationship hiccups stemming from condition complexities, or just simply to get through the day, the key is that we are not alone, that there are others with knowledge and experience who we can ask questions or bounce ideas off. There are fellow patients who ‘get it’ and they are just a few clicks of a button away. It’s a resource that I could never put a value on, it is truly priceless.

The added bonus is that I have met some truly wonderful people online. I have made friends – really good friends. We may be separated by time zones, but if you look at it from another point of view.. we are not restricted by time zones – we can meet so many people from all around the globe, so statistically speaking it is perhaps not that surprising that contact with so many people reveals some souls who fit beautifully with our own and who become truly dear to us in ways we never would have expected. Facebook has expanded my friendship group, who knew? 😀

I’m not on Twitter, maybe one day I’ll get round to it. I don’t have a mobile phone that connects to the internet. I do now have a Pinterest account, but the function of a picture sharing site is different to Facebook. Through the Book of Faces I have found long-lost friends, I have more regular contact with friends who I had not lost but who are geographically far away (which is anyone further away from me than my bathroom 😉  ), I have gained and clarified knowledge about my condition, shared information with fellow patients, I even have my own blog page on Facebook. So from a patient perspective there is no question for me which is my favourite social network, because only one has enabled me to come together with fellow patients with such an astoundingly positive way.

Much as I hate to love a big corporation on sheer principle, this particular one has truly changed my life, x

Fbk page

x

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P.S. If you are on Facebook… there is a superb research page specifically relating to CRPS called “RSD/CRPS Research and Developements” (recently a finalist in WEGO’s Health Activist Awards). The page is run by knowledgeable admin’s who are a mixture of expert patients, experts in the field and a fab combination of expert patient with medical training. Research is posted regularly, and it’s a great place to ask questions of a more medically focused nature. (If you want to come back and find it later, it is also listed on my ‘Useful Links‘ page).

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The reference mentioned in the text was:
Morahan-Martin, J.M. (2004) in ‘How internet users find, evaluate, and use online health information: A cross-cultural review’, CyberPsychology & Behaviour, Vol. 7, Issue 5, 497-510

If CRPS was an animal….. (tee hee)

If CRPS and it’s comorbidities were an animal, it would be big. It would have claws. And it would be dissociated from reality.

The animal doesn’t get a name. That would make it more solid, more ‘real’. It’s an ‘it’, a ‘thingamajig’, a ‘wossname’, a ‘doobree’. Besides, it has a tendency to change and morph over time.

The critter means well, but gets it wrong. A lot! It galumphs around trying to be useful but doesn’t listen properly and never double checks what it’s being told. It just grins in it’s despairingly cross-eyed, boggled brained manner and clatters it’s uncut claws across the shiny floors, totally unaware that it’s leaving huge great marks that we then have to try and smooth out.

Training it is a slow process. It’s not all here and easily distracted. It has a tendency to just keep ‘being’ in a little world of it’s own. Scattering sticky slobber as it skitters about the place.

Living with a huge critter that is dangerously built, but well-meaning in a miss-the-point, thick-as-two-short-planks kinda way is, well, it’s tiring. It’s wearing. Truly exhausting. And with it’s tendency to hiccup and burp it’s flaming breath at the most inopportune moments, no kennel will take it in, not even for a weekend break.

Keeping it’s attention on what you’re trying to say to it is tricky.. one shiny thing in the distance and it’s off again! So it takes constant work to keep grabbing it’s attention, distracting it from the shiny things, endlessly saying “Ooh look what’s that just here? Isn’t it interesting? Isn’t it pretty? Lets keep very still and quiet so we don’t disturb it…”        *sigh*

I’ve had my critter for many years and it’s improved a bit on the stuff I’ve been trying to teach it over a long period. Endless repetition and routine seems to help it develop a different habit, rather than listen to any reasoning I tried. But it develops new bad behaviours if something catches it’s interest, and then I have a new challenge once more. So I’m constantly having to do my research and learn about the incorrect behaviours to figure out ways to put them right, or at least improve them enough to reduce the hiccup and skittering damage!

Becoming a critter handler is… a surprise! It’s not a choice. It’s just something that happens in life to some of us, and they’re so big and unruly that we have to learn fast or flounder in the enthusiastic slobber. Ick! Most of us flounder for a while – going from a life with no critter… to a life with a huge galumphing critter is, er, well, it’s a bit of a shock to say the least. But like any other animal, it’s less about shouting at it, and more about working out how to make it listen and learn. Which is relentlessly hard work in extreme cases like this one, but worth it for the small successes as the gains are actually pretty large.

CRPS critter

Dear older me…

Hello me, twenty years older me (well done chick!),

Hope you’re doing okay today and that the pain levels are not too bad.

I’m writing to you from 2013, it’s April the 6th where I am on our timeline. Just one day until the Tai Chi tournament, eek! You know how it turned out, of course, where it leads (if anywhere), what broader meaning it has for my life. You’ve already walked that bit of the slow path, and I’m just embarking upon it. At the moment it’s all unknowns and possibilities to me. I can only imagine where it may take me, what it may teach me, how I could grow from such an opportunity of experience. I hope it still makes you smile looking back. We really enjoy those moments of ability between the many hours of pain and other symptoms, eh? Hope you’ve got some piccies to remember it by.

You’ll also know what happened after the masters dissertation: how long it took me to recover to be able to write the paper for open access, whether it made any difference at all, whether it helped people, whether it sparked further research and whether I got to do any more research. You know that at this point in time you were wishing a university would fund you in a flexible part-time home-based PhD. And I’m further back along your timeline wondering what might transpire from the investigations into local universities. Did you get to speak at the conference, by the way? Hope it went well if you did. I’m much better with my nerves than I used to be, but perhaps by now you’re even better. Bertram caused us to learn some pretty hoopy skills, huh?!

Bertram the Hungry Bear!https://elleandtheautognome.wordpress.com/2012/02/23/the-hungry-bear-that-lurks-in-my-coat-cupboard/

Bertram the Hungry Bear!

Funny really, I get to write to you in my future and all I’m writing about is the events during this very tough month! That must seem so limited to you, it’s just memories to you and yet they’re everything to me right now.

You might remember the concerns about this month. Too much mega-important stuff in one month. Concerns about the effects on health, on disability benefits, on my future ability to function with this progressive disease. By the way, did the DWP ever update their list of health conditions to include CRPS in a more modern multi-systemic understanding? It’s ridiculous how I’m about to be assessed by people with no knowledge of my condition and their official reference is only an understanding of the condition which is at least 19 years old! I’m scared of what’s happening. If this reaches you then I am glad you made it through the stress without the health losing the fight by itself. And if it doesn’t, then to whoever is reading this (is that you, Magic Dude? If it is, I love you, xx) know that I did my best to live every day with a smile, I always had a full heart, and I try to keep progressing overall even when the new symptoms keep adding to my load. I reckon I’m too stubborn to keel over though, so I think you’re me. Twenty years older me. Reading this with more knowledge, more experience, more symptoms and hopefully not any bitterness. I hope you can still feel the love, it’s what keeps me going now. The love of beautiful souls I know, and more that I meet along the way. Bitterness doesn’t get a look in when we’re full of love for the sunshine, the cups of tea, the good souls we know and meet as well as the various achievements along the way. It’s sneaky, it defeats the negatives in life by coming at them sideways and nudging them clean out of the way. It makes me chuckle ;-D

I’m hoping that you still find simple joys in life to make you smile. I know you’re creakier than I am now, that’s a given even despite the specific health issues that we have. But I know you’ll have continued to determinedly do some physio-ing, maybe you’ve even got better at Tai Chi and taken it places. Keep working at it, the Tai Chi and Qi Gong can keep you going, keep our nervous system calm and doesn’t it feel good to be able to do it?!

So what’s happening, chick? What are your current projects? Yes, I know you’ll have something on the go. Even if you’re housebound you’ll find some way to be useful during the functional-ish bits of your day. How’s the online stuff going? (Bet you’re still addicted to the computer window-on-the-world! 😉  ). How’re the nieces doing? (Bet you’ve still got their kiddy drawings stashed away and kept safe, you hoarder, you! tee hee). Hope you’ve had lots of fun with them growing up, being an Aunty is so special. Give my love to the twenty years hence version of Magic Dude, xx

Anyway girl, keep kicking arse, okay? You’re nearly 58 years young, and there’s plenty you can still experience and achieve even with the health restrictions. Keep being you, keep loving the world, keep acting daft and keep chuckling. I love you for being you, for being honest and for sharing your heart. Don’t lose that coz it makes you who you are and keeps you going. Keep battling girl, keep smiling, sending lots  of love and a big hug from the past. Oh and Magic Dude says “do you fancy a cup of tea?” 😉

x

If I could do anything as a Health Activist…

That’s an easy one to answer, but a tough one to precipitate.

Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.

The problem…

..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).

Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.

If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂

Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.

So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.

And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)

As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!

Pretend Superhero

A bit of silliness always keeps me going! 😉

x

Your certificate of awesomeness…

WEGO Health Activist Writers’ Month Challenge, Day 3:
“Post a picture that symbolises your condition and your experiences”….

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This award is for you, for our condition and our experiences, the space is for your name….

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Elle and the Auto Gnome blank certificate

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xxx

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

Happy 1st Birthday to the Elle and the Auto Gnome blog!

Wheeeeee! A whole year…already? Wow, time flies when you’re having fun! And it is fun as well as heart-warming and indescribably amazing being on this blogging journey.

Banner, Jan, Blog's 1st birthday

Yep, it really does say One’th! 😉

I created this blog to provide information for my fellow patients on CRPS and the rarely ever spoken about overlap with Dysautonomia. I had no information for so many years, I didn’t want other people having to go without such basic and crucial information for understanding, working with and treating their condition the best we all can. Not to mention to teach those of the doctors which we meet that are less endowed with knowledge and understanding of our complex conditions than we would prefer, (and to share some useful research papers to support you in the passing on of information). xx

The blog is always ‘becoming’… There’s always new research getting printed and then useful bits of info’ to be added into my ‘What is CRPS?’ and ‘What is Dysautonomia?’ pages. So that’s ever ongoing and ever changing as the amount of research happening around the world is phenomenal. I’m a bit behind at the moment.. 2012 was a stupendous year for CRPS research in particular, especially in tying together different aspects of the biological experience, (if you have systemic CRPS then check out Schwartzman’s superb paper on my ‘Useful Links‘ page for a very handy paper indeed).

The blogging part was the bit that was new to me. I wanted to share experiences, knowledge and have a chuckle along the way, too. Who wants to read (or write) serious things all the time? 😉 And seeing as I have a laugh at the ridiculousness of the condition at times, or at situations I find myself in, or just anything really (tee hee) I wanted to share my upbeat lighter tendencies as well. Seeing as silliness is part of how I live, it’s also part of my blog too 😉

I guess you must like it as I’m utterly blown away by the visitors to the weblog. My thanks to all of you for the 9,143 visits in my first year! Wowsers!

The most popular separate page this year has been ‘What is CRPS?‘. I am so so thrilled that it is of use to you.  And I’ve been really pleased to hear that some of you have been able to put it to additional good use to show other people (including families, doctors and teachers) to allow those around you to grasp a better understanding of your condition and what you are dealing with each day. My intention in writing the page was to be useful, and it is most gratifying to hear that I have been able to help in some way. For the future: I hope to upload a downloadable version for you that is less bloggy and more professional so that you have a printable format as well. That’ll have to come after my studies are complete, though, so…after March sometime, xx

The ‘What is Dysautonomia?‘ page gets a fairly high number of visits, so I really hope that it is also proving to be useful. For the future: I hope to add more info’ from journal papers as they crop up and also create a downloadable file for this too. Once again, it’ll have to be post-studies, though, so hopefully I can get onto this for you for after March, x

There is so much I want to write about in the coming year. That little notebook I have mentioned before is chock-a-block with notes to myself about things to get online! Some are very practical, some are experiential and some are just for a bit of fun of course. I have found that really I tend to write about what occurs to me in the moment, or what someone has asked about, rather than refer to anything in the notebook to get me started. There’s so much whizzing round my brain that’s there’s never a problem with finding things to write about, it’s more about pinning myself down to write about just one thing! 😉

One of the things that has continually both astounded me and made my heart feel all warm and happy is the constant additions of flags to the list of countries on the blog’s ‘dashboard’. To receive visitors to the blog from all around the world has made me feel more connected, made the world seem that much smaller and pretty much resulted in a permanently happy expression with a tinge of disbelief! Still can’t quite get my head around the idea, I have to look at all the gorgeous flags to convince myself it’s really true. Wow, it’s so good to ‘meet’ all of you.

2013-01-29, Blog visitor map, thank-yoooouuu

For those of you who have so far felt less confident about posting messages, comments, questions or natter on here, let me reassure you that I lovelovelove the contact, the feedback, the comments, the ideas, being able to help in some way, meeting new people. The bottom line for me is that I wanted to be useful, to make some sort of a difference, but you don’t have to be a fellow patient to comment on this blog. There are readers out there with similar and overlapping health issues and readers with different health issues to me, but there are also readers out there who don’t necessarily have any severe health issues, too. Making a difference can be as specific as passing on crucial medical info’, and general as how I keep positive or as simple as making someone laugh 😀 So don’t ever think I will be less interested to hear from you, you are all part of what has kept me blogging and I value input and natter from all of you, xx

I have met wonderful fellow patients, one of whom surprised me by writing a poem about the blog, (yep, that’s you lovely Carly 😉 ), and every single one of you who I’ve met here and on the Facebook page astounds me with your strength, your humour, your determination to understand your conditions.

I’ve also recently met fantastic fellow CRPS bloggers Caf and Hope when we were all attempting the WEGO blog challenge in November. I have some friends I’d already met who, as it turned out, also blog…  like Isy Aweigh who seriously knows her CRPS stuff, and Sylvie Ghysels who is an amazing multilingual gal who is working hard at getting CRPS info’ out to the French-speaking patients among us. I love and admire them for what they do, and cheer them on loudly… <waves pom poms enthusiastically> ! And of course I’ve gotta give a heads up and thank-you to Michelle for being encouraging and supportive as I endeavoured to get the hang of blogging, I came across her fabulous Dysautonomia blog when I was looking to see whether my blog was a bit too unusual! I found out that I’m in really good company so I’m gonna remain this way! 😉 Not forgetting all of the fellow bloggers who follow this blog, thank-you all so much for your support, as I’m buried in studies there are still some of your blogs I haven’t been able to visit yet, but rest assured I’ll get there, xx

During this first year of blogging, I have written some silly posts, got a bit writer-y and heartfelt in a couple of posts, written a poem or two, taken some daft pic’s, talked about studying whilst disabled, mentioned my love of Tai Chi physio-ing a few times,…. there are all sorts of main posts I could pick from the year, but as there is a Full Archive that you can refer to I shall instead pick out…..

Some key posts for fellow patients from my first year of blogging:

A Jar of Joy! – a way to store our joys and re-live them to ease the next New Year struggle

Always get copies of your hospital notes

The weirdest thing about my health…  – the variability of my conditions

The mystery of the balloon-inducing insects  (oedema, swelling, insect bites)

McGill Pain Index, CRPS and Fibromyalgia

British disability benefits, shockingly shameful behaviour

What I take with me to my doctors appointments

Experiencing cognitive change

Temporary cyborg and wearer of an invisible (purple) cape – my visits to cardiology, & what a tilt table test is

Why I also live in Cyberspace

This Too Shall Pass

Tick…Tick…Tick…Tick…Spoon!   – The infamous Spoon Theory and link to Christine Miserando’s original creation of the theory – great for helping others to understand our limitations.

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And as if I needed any more motivation to keep doing what I do, here’s Carly’s poem that she posted to my blog page on Facebook and which promptly made me cry (in a good way!). This is why I share info’ and blog and why I have no intention of stopping…..

“Why is it I feel the way that I do?
Seams coming undone from being sewn with wet glue.
Piece myself together each time, til the end,
just to break apart and have to start from the beginning.
Living in this world you can feel so alone,
especially when the pain burns down through your bones.
It seemed like no one else could ever truly understand,
until I reached out online for a helping hand.
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“The friendship I found was never expected
searched “ice/CRPS” and then I connected
To a world of support that made me feel right at home,
lead by a fearless, silly woman… Elle and the Auto Gnome.
Her wisdom and joy have brought me such comfort,
and although we’re new friends I already love her!
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“The way she takes all of the negative things
and turns them into positive dreams!
She challenges herself and although she may fall
She gets back up and conquers it all!
Through all of her strife she never stops offering
all the help she can give to others in suffering.
What why this woman’s a hero and more
and her kind hearted spirit I’ll forever adore!”
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                                                – Carly Goebel, Oct 2012
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