WEGO Health Activist Writers’ Month Challenge 2013

I attempted the WEGO Health Activist Writers’ Month Challenge (HAWMC) in April last year. I was trying to write one post per day for the challenge. On the 7^th day I wrote about my resulting loss of brain and had to stop.

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

After that I wrote the occasional post but I had learnt a valuable lesson about pacing my beleagured brain as well as my inconsistently inept body.

I’ve just completed my study dissertation and so this HAWMC 2013 I have one less brain-factor to consider, and a substantial one at that, (although bear in mind that flexible study sessions at home were only a random, once in a while affair with my mostly lack of brain. Tough gig). So let’s see how I manage it this time, eh?

After writing the last bit of the dissertation I am in a major CRPS pain flare which is increasing the level of dysautonomia issues as well. So I don’t for a moment think this will be easy, or even that I can complete the full challenge and post every day of the month. It’s just not going to happen. But I do think it’s about time I got to come back to my weblog hub and spend some time hanging out with you after my study-induced hiatus. I haven’t been here as much as I’d have liked to have been. I’ve got some updating and catching up to do.

I’m going to give the HAWMC a whirl, though. I’ll try to take it carefully to avoid flare, but I know it’s going to be tough. In the same month I have a major consultant appointment, a disability benefits assessment and a physio session that I hope to spend doing Tai Chi in front of people instead of in my living room. All of these things will involve travel (as a passenger) and stress (from the challenge of managing my health in trickier circumstances than usual) which means the pain levels will rocket some more. April is going to be spent battling flares because I just have too many things in one month. Yes, three appointments in one month is (for my body) a lot to deal with and it will cause major health repercussions, (not something that I expect my assessor to comprehend in the health ‘assessment’ as I’ve been advised that none of them have any training in my complex, variable condition whatsoever. Terrified much?)

So yes, April. Not going to be an easy ride this month. The ‘assessment’ and the appointment will be causes of stress for different reasons (one because there’s no comprehension of my condition to assess my related variable functionality, and the other because of the amount of travel involved). So I’m hoping that occasional short Tai Chi physios will help me to battle through the pain, stress and dysautonomia flares, in conjunction with oodles of hot water bottle rest and gritting of teeth when the pain gets off the scale. Don’t you just hate it when you begin a ‘busy’ month (by my body’s standards) already in flare? Ah well, I like a challenge, right?!

I know that the act of writing for the blog will be a good distraction at times, and at others it will be impossible to write owing to the state of my health.

To begin the April challenge whilst trying not to scream with the pain is not my ideal beginning. But it is the way it is and I will keep writing whenever I can.

So here’s to some varying themes and inevitable silliness along with many hot water bottles and cups of tea. Here we goooo….

x

Dissertation deadline day!

I was there to witness the very start of the day… that bit of the new day that turns up right after midnight. With not much brain-time I have to study a bit, rest a few hours, study a bit, and so on, so it takes me ages using a paced-brain approach, but I get there eventually! I had lost three months to worsened Dysautonomia symptoms and CRPS pain flare after two days of tests in London last November so my planned and calmly paced timetable had gone out of the window. About 1am I figured I could leave the rest of the sorting out for after some sleep but the pain had soared so high in my legs that I was stifling a scream. I continued stifling that scream for a long while and eventually managed to crawl off to bed sometime after 3am. Not the best start to what needed to be a productive day!

This was my dissertation deadline day, and here’s how it went….

1. Breakfast, 1st physio’

2. Check conclusion and abstract/introduction

3. Pour boiling water over fingers whilst making a hot water bottle for legs pain, doh!

4. Re-write bits of conclusion and abstract for far longer than I should have

5. Repeatedly fail to find the number references for the anonymous participant quotes

6. Cup of tea

7. Finally find them (hurrah for noting numbers in my Research Journal!)

8. Try to re-read conclusion and abstract but find that my brain is not available

9. Faulty fight or flight response kicks in (ah, The Fear!)

10. No choice but to throw caution to the wind and print 4 copies of the dissertation (324 pages in total.. it takes a while!)

11. Spot a typo’ in the original survey! meh

12. Sign all 4 authorship statements (with 4 different looking signatures, um)

13. Take photo’s of the bombsite style living room!……

14. Use my 2nd physio to drive to a store where I can park right outside to get the dissertation copies bound

15. Whilst waiting for the binding to be done, I physio-wander round store in a surreal state talking randomly to employees

16. Drive home

17. Take photo’s as I parcel up the bound copies with all the additional paperwork

18. Hang around a bit to see if Magic Dude will get home in time to drive me but no such luck, so I steel myself to drive into the village to post the parcel off

19. Dissertation is in the post, hurrah! (Post Office lady keeps reading the address trying to figure out why I am smiling exhaustedly about something which is “important” and needs ‘proof of posting’ (It says ‘dissertation’ on the address label, and I wonder why she keeps expecting to find more info there!)

Bye-bye parcel, I hope the markers are kind!

20. Walk back to car park (I don’t really know how I’m still functional at this point!) and suddenly I break out in a grin.

21. The couple who have just parked their car next to mine look a little concerned when the lady who has just thrown her hands in the air whilst gleefully telling the world “It’s gone” starts walking towards them!

22. Drive home. Still no Magic Dude. Put the bins away despite the pain. Stupid thing to do but I don’t want him to have to sort everything out when he gets home. I know I’m in for a Flare Extraordinaire as it is.

23. Tidy bombsite up a bit.

24. Receive surprise celebratory gift of gateau from Magic Dude on his return

25. Realise that I never had any lunch

26. Accept fresh hot water bottle and a cup of tea from Magic Dude

27. Engage Sofa Slug mode

That was three days ago and I am still totally exhausted and beginning to flare even more. I hope I’ve managed to do enough to pass despite the health issues. Fingers crossed.

Now…. sleep, need more sleeeeep, and ohhhh the paaaaiiin! *grimace*

Whatever the official outcome, whether I pass or not, this counts as a win for attempting, enduring and (hopefully) surviving! Owieee and yet also hurrah!

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.

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.

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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How to stop laptops from falling on your head

I awoke as Magic Dude got ready for his early shift this chilly Sunday. I found that my hints of a sore throat had increased overnight and I was warm and yet really cold at the same time. Uh-oh, I can’t afford to be ill, the knock-on effects with my condition is severe and I have studying to do that I’m already way behind on. So my lovely Magic Dude brought me a cup of tea and the laptop before he left and made sure that I had ‘warp capability’ (i.e. that the wifi was switched on ).

I set the laptop up on  the adjustable-height stand (which is an absolute saviour for allowing me to use the laptop without putting the weight on my CRPS legs) but the near-fainting then decided it wanted to join the party (one of my Dysautonomia symptoms) and I had to lay down. So I did what I have done before…. I cranked up the height of the laptop stand so that it looked like this…

My eyes must’ve thought they were missing an opportunity coz they then decided to join in, too. As I tried to focus on the screen my eyeballs roamed around misbehaving and not allowing me to see what I was trying to look at. It was all getting a bit silly, and then when I then moved my painful legs the laptop fell on my head!

Ouch!

I can read the signs. When they’re as unsubtle as this it’s kinda hard not to! I took this as a suggestion that I put the do-stuff idea to one side and instead I snuck back under the covers and phased in and out of sleepy consciousness until midday. Not the norm’, but managing this condition includes knowing when to say ‘zzzz’. Most of us with CRPS and/or Dys’ are familiar with endless lack of sleep, so when a day arrives where my body will try to fake some not-quite-sleep then I’ll take what I can get, thank-you!

Now I’m up, I’ve done my first physio’ of the day, and I’ve finally sought out the other half of the velcro the Open University furnished me with. The laptop stand that was sent out to me to help me to try to study despite the health issues was already decorated with a couple of strips of velcro. The idea was that I would then stick the other part of the velcro to the laptop so that it would not move on the stand or, in the case of a near-fainty person, it would not be quite so likely to fall on my head! But the laptop was so shiny and new I couldn’t bring myself to deface it with ill-person-velcro! Hah! Not so any more, I have velcro and I will use it. My head demands it!

It’s funny how no matter how comfortable and accepting we become with regards to our conditions and limitations, there’s still the odd little thing which we get stubborn about on principle. It’s taken me nearly a year to get to the stage where sticking bits of velcro on my laptop (my constant companion and portal to the outside world) does not seem such a violation of shiny tech or such a feel of being abnormal enough to require velcro. Daft eh? But truly, if something works, make use of it. That’s how we enable ourselves to do more.

So onwards with the velcro! My little interim task for the day!

x

WEGO Health Activist Nominations

Oh my, oh my, oh my, oh myyyyyyy! I’d been contacted by WEGO Health to let me know that I’ve been nominated for the Rookie of the Year Award a wee while ago, but today I opened up my emails to find several messages from WEGO about nominations for three other awards as well and I am currently still on a floaty cloud of happy surprise!

Thank-you lovely readers for being so kind as to nominate me for several awards for WEGO’s 2012 Health Activist Awards. I am totally blown away by your kindness and your ever wonderful and heart-warming support. I cannot find the words to describe being transported from a morning of tired slogging through my rather bland porridge (I think my tastebuds may have got used to me accidentally tipping far too much cinnamon on, my hands were less wobbly today and my tastebuds were rather sorry about that!) to “Wheeeeeeeee! Oh good grief! How blummin’ lovely are theeeeey?” *wibble*

I have now been informed that not only have you nominated me for 2012 Rookie of the Year, but also for 2012 Health Activist Hero, 2012 Unsung Hero and 2012 Hilarious Health Activist! Wow! I’m totally blown away! Thank-you so much, I am challenged to find the words to adequately express my feelings as I’m still in a state of happy surprise! (With my ANS it’ll take a while for the wibbles to settle down, too, so I may as well go with it and grin like an idiot for a few hours, eh?)!

I want to say to keep voting for your fave health activists online because there are some truly amazing people that I’ve met out here in the online ‘cloud’, but the voting closed on December the 31st and so now it’s over to the WEGO Health judges to get some mega-reading in. Lawks, they’re gonna be busy! There are some amazing bloggers out there and I salute them all. I’ve met wonderful fellow bloggers and fellow patients since starting this blog and there are no words to adequately express the strength, love and beauty that is apparent in your words and actions online. I am honoured to be counted among you and I adore the support and sharing online that helps so very many patients living with a massive variety of health conditions. Each and every individual doing this makes a positive difference and has priceless value because of it, xxx

Life and Death

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

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Older,

Wiser,

Weaker,

Stronger,

One day at a time.

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Finding strength through love,

A pathway through the minefield.

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Patient,

Writer,

Teacher,

Joker,

Rays of sunlight shine.

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Voices lost and present,

Sear and sing within my heart.

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Battle

Onwards,

Fading,

Waning,

I’m ‘me’ all the same.

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No shame in my sustaining,

Shining light throughout the fear.

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x

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National Health Blog Post Month

Well, let’s be realistic here…. health issues, studying and brain loss meant that I was unable to post each day for the ’30 posts in 30 days’ challenge back in April. In fact I lasted all of 6 blog posts into the challenge then my brain sputtered into uselessness on day 7! As it takes me so long for work through the 30 post suggestions I also write other relevant posts in between, which just makes it take even longer to get through the 30 posts! I’m one stubborn bunny though. I’ve still got more to write about from April, but I’m getting there!

And now it’s November and WEGO have set a similar challenge, making this National Health Blog Post Month for us health bloggers. I want to do it, although I know I can’t do it in the 30 days. I had to face up to the reality back in April that my health won’t let me post every day without keeling over  But that’s the point…. I’m a health blogger. I blog around my health. My conditions are a major issue and they certainly don’t affably fade into the background to let me get on with things without them. My brain stops working if I try to use it too often. Some days I will be too faint to stay upright or think straight. Some days my pain will be through the roof. Some days I will be able to write. For a short while anyway.

The point is, I don’t give up, but an important part of my everyday life is the sensible ‘pacing’ of activity that allows me to have some kind of everyday life as much as possible, even if it’s just getting washed, dressed and making my own cup of tea. If I force myself beyond what my body can cope with, I will pay a hefty price. So I do what I can when I can, and I accept that some days I cannot write and it’s best for me to rest so that my brain can recover more quickly. Such is life when living with a chronic condition, and I know it works, so I’m sticking with it, x

Writing the blog is really important to me, though. I created it because I wanted to share the information that I’d found. If someone else had been able to do that for me it would have saved me many years of slowly discovering these things and it would have helped me to develop ways of balancing my activity with my conditions much sooner. But this blog has become a part of me in the few months since it’s creation. It means more to me than I can find the words to express as I sit here in the evening with a tired brain! I always said that if this blog helps just one person then it will have been worth it, and yet the responses I have received have been more than I ever would  have imagined. The heartfelt words from readers have touched my heart and let the tears run a little. The connections, the warmth, the strength, the humour and the big hearts of the readers I have met would restore anyone’s faith in the human race. There is far more to writing a health blog than meets the eye. It’s personal in more ways than just me sharing… readers share back. We are a community with shared understanding. Writing a health blog is more heart warming than you might imagine, and a lot more fun than you might expect

Back in April I posted about why I write online here. It’s one of my more heartfelt moments of writing. If you fancy it, you can give it a read and let me know what you think

Love and hugs to you all, x

An insomniac moment of poetry

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Sat downstairs awake once more,
Listening to the upstairs snore,
Restful in my sleeplessness,
Knowing he, at least, will wake refreshed, xx

Tomorrow is another day,
And through it I will make my way,
With outings of unusual type,
Then home to see my friend on Skype, xx

All is good despite the stealth,
Of worsening and scary health,
I live my life with joys I find,
You’re in my heart and in my mind, xx

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Those I love keep me going,
So you see, through this poem,..
My heart leads me through each day,
In the joy of love that lights my way, xx

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Good ole sofa and laptop combination!

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After writing this I wandered upstairs to bed to give the ‘sleep’ thing a go. Whilst I was lying there trying to convince my body to go into uber-relax mode I remembered that the lovely Carly had done the same thing, as she posted her own poem on here one night when she also could not sleep. (Carly’s poem is in the comments section on this link for you to read and it is beautifully positive).

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I write the occasional poem, but I don’t do it seriously, just for a bit of fun, or as an outlet. It’s a great way to get our emotions out. Sometimes we manage to say in a poem what we’d struggle to say otherwise. And the way a poem has an ending gives us a current summation point that we just don’t often get to experience in the middle of our ongoing lives. It breaks up the relentlessness into more manageable and simplified chunks. Sometimes it may even be easier to give our loved ones an insight into the personal experience of our conditions through poetry, it tends to cut to the chase and trim away all the extras.

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Why not try it yourself? Whether you are living with a condition or not, whether you’ve met me in the 3D world or online, whether you want to write a poem about deep and meaningful stuff or about the simple joys of tea and sunshine. The style, length etc can be whatever feels right, why not give it a whirl?

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And if you post your poems in the comments sections below I’ll collect them together and publish them in a post on this blog, accredited to the names you choose to give. I love the idea of a readers’ poetry post

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Love to you all from me, x

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Nominated for WEGO Health’s ‘Rookie of the Year’ award!

I’ve just received a rather lovely message on my Facebook blog page from Susan Mees of Wego Health. She just popped in to inform me that I’d been nominated for their Rookie of the Year award 2012.

*gasp*….. oh-my-goodness…. followed by *gleeeeee*

The award that I’ve been nominated for.

The Health Activist awards were launched last year in 2011 and I enjoyed nominating my favourite bloggers for the amazing work that they do sharing information, and making me smile on my slightly wobbly days.

Since then, my world has changed a little. I’m now a blogger myself. I write about my conditions to share information that I have found, to share experiences, to let fellow patients out there know that they’re not alone and to share some laughs because, as you know, silliness is a very important part of my pain management regime!

I have discovered that I love to write, which fortunately is something that I can do whilst sitting, or even lying down! Admittedly, I cannot write whilst my brain is absent, (which is a fair amount of the time), but this blog has been a part of me since I first signed up to WordPress to create it.

I had no idea, though, just how much a part of me this blog would become. How much a part of my life it would be. Or how many wonderful people I would meet along the way as a result.

In life, different people in varying contexts see aspects, but not all, of who we are. And yet this blog is me: the patient, the researcher, the joker, the pragmatist, the health activist, the geek, the sci-fi fan, the Tai Chi student, the rock chick, the used-to-be-an-artist,…. and more. For those of you who have been readers of this blog for a while, you have already begun to know me as my long-term friends know me. I share who I am through my writing.

Thank-you. sooo much, for the nomination. And thank-you for being so encouraging and supportive. I’m feeling a bit soppy as I write this, so I’ll just go into my virtual kitchen and make you some tea whilst I pull myself together!

Please do support the health activists out there who are blogging their hearts out and doing their best to make a difference in some small way. Every one of us does this because we want to be helpful, to make some sort of a difference, and to reach out to give a virtual hug and some pom-pom-cheering encouragement to all of our fellow patients and their loved ones.

There are various different categories available, here’s a few blogger-related examples from WEGO’s nomination page (the link is below):

Best Kept Secret – Awarded to someone in the online health community who is doing great work but hasn’t gotten a lot of attention.

Health Activist Hero – Awarded to an inspiring, supportive, and knowledgeable Health Activist who has truly changed people’s lives.

Hilarious Health Activist Award - Awarded to the Health Activist who makes you laugh alongside their advocacy.  Nominate your favorite comedian.

Ms/Mr. Congeniality – Awarded to someone who always has a kind word, a positive note, and a virtual hug.

Paperboy Award – Awarded to the Health Activist who always delivers the latest and greatest health news and research.

Rookie of the Year – Awarded to a Health Activist who came on the scene in 2012 but has inspired the entire community.

Silver Stethoscope – Awarded to a healthcare professional who utilizes social media, online community, and technology to make the world a better place.

Trailblazer Award – Awarded to the Health Activist who is ahead of every curve, excited by new technology, and encourages everyone to join them.

Unsung Hero Award – Awarded to the member of your community who is always helping, advising, and sharing – but may not know how amazing and valuable they are.

There are some fantastic bloggers out there so please do send in your nominations because, as I’ve just found out, just getting nominated is a wonderful bit of feedback to warm the heart and make us grin in happiness.

I’m not asking you to vote for me, (although I won’t complain if you do, of course!), but I am just suggesting that you follow your heart and show your appreciation for those bighearted bloggers out there. If their heart is involved in what they do as much as I find mine to be, then it will mean a lot to them. I shall, of course, be nominating a few bloggers myself, xx

Here’s the link to make your nominations, you can nominate as many as you want for various awards, (bloggers, professionals online, twitterers, vloggers ….etc) and you can even nominate one website/blog for multiple awards….

http://info.wegohealth.com/health-activist-awards-2012/

Supportive friends and my thematic writing style

Writing is, for me, a fairly recent discovery. It began a few years ago when I got to the stage of having seen so many doctors who did not know about my condition that it was either… keep waiting for someone else to do something about this, or… do something about it myself.

Speaking to my friends about this, the general consensus was that I should write a book. They gave me many (in)credible reasons about why they believed that I was so suited to accomplish this feat, and the phrase “you are an inspiration” kept cropping up. I struggled enormously to comprehend their point of view, especially the idea of being an inspiration just by being stubborn, determined me!

The overriding problem was my lack of confidence and belief in myself. None of us should believe ourselves so capable and knowledgeable that we are no longer open to new, or corrected, knowledge. I believe it’s good to be humble. In this manner we retain our open minds and allow ourselves to keep growing and learning. Of course the part I’ve always been terrible at is the part where I should at least have still acknowledged my own skills!

No matter how hard I tried, I could not see myself the way my friends said they did. I am an expert patient, but I felt I was ‘only’ an expert patient. And I’m not the only one in existence. There are other patients out there with medical training, which gives them a much better foundation on which to build knowledge of our condition. The truth is, of course, that we each have much to offer and different foundations to build on. Individually, many of us have the knowledge, skills and motivation to write a book that could be helpful to other patients. But the biggest impact is when we share and pool our knowledge and skills, and thanks to the internet we have a fantastic communication resource at our fingertips.

So I worked on the humble-ocity (!) rating, privately wrote about my ideas, and things have been a-changing.

The internet gives us connections worldwide, and the information made available on it is accessible at any time of day or night from our own homes. If I wrote a book my fellow patients would need to hear about it, decide if it could be useful to them and then spend money to gain access. Whereas this blog is available to anyone who has access to the internet at any time and at no extra cost.

Writing a blog also seemed less scary as I certainly did not see myself as a writer. I began by drawing together the “What is CRPS?” page because gathering information into one place was my initial main goal. That page reads rather differently to most of the rest of this weblog because it is information based, and I was still finding my way when I wrote the initial bulk of it. I took to chatting a bit more in blog posts but it took a while, and some encouragement from others, before I found my ‘voice’: the way in which I speak through my writing. It turns out, all I had to do was tap right into the core of me and just be myself. Who knew?!

So I have a huge list of themes I’d like to talk about and silliness I would like to share, and they are scribbled in a notebook (a gift from Magic Dude for that very purpose) which I keep next to the bed in case of random inspiration! But when it comes to choosing what to write about in the moment I will usually go with how I feel, as I’ve found that’s the best way to put my heart into what I’m saying. I’ll look at my notes and one topic may jump out at me. At other times I might have a thought or experience that I feel like sharing, or perhaps a silly picture. One of my most recent posts was born of the incredibly poor media representation of people on disability benefits in the UK, (which you can read here). And rather than divert from my other writing in this blog, it actually reveals more about me as a person.

I never have a plan for what I’m going to write. I know essentially what I want to ‘say’ in the sense that I know how I feel about the topic, but I allow what I write to come together as I go along.

Sometimes this results in a bit of a hodgepodge of ideas, but often it just comes together in the natural flow. With some of my posts I have found that the process of writing is actually a journey of thought and emotion which naturally leads to a really honest core statement or point of view at the end of the piece. When this happens it is so instinctive that it feels like the natural way to end because I didn’t plan it. The words are raw, genuine and from the heart. And as they flow from me they feel right and lift my spirits. I used to be an artist, and in those moments where the words just flow from me I feel a similar joy in writing as I used to feel when painting or working with clay. It’s a ‘high’ of self-expression and openness, and in that moment I dare to expose a little more of who I am to the world.

(From-the-heart post examples include, This Too Shall Pass, Why I also live in cyberspace, and Experiencing cognitive change).

So I have no plans for my posts other than a general theme or topic. I write from my heart, how well this translates depends on how well I am at the time.

As for a title, I never start with one. The writing comes first, the meaning takes form, and the structure occurs with the logical order (depending on how logical my brain is at the time!). A title gets added at the end. I say “a title” rather than “the title” because as far as I’m concerned there are always many possible titles, so I just grab one! Perhaps I need to work at this? Hehe

I still don’t feel like a writer. Hang on… I think that has just shifted… I do see myself as a writer (of sorts) (sometimes)! A mishmash view resulting from ‘writing’ compromised by the effects of the ‘Auto Gnome’. But I am always just me. And when a piece comes together I can be pleased just as I would be if a painting turned out okay. We always see the flaws in our own work, but we can still be pleased when something turns out better than we expected. And there is joy in the writing, joy in the sharing of thoughts, feelings and valuable information, and a joy-satisfaction in the pressing of the “publish” button as I realize that I have shared another part of me and that it’s not scary to do so anymore.

Writing is now a part of my life, and I intend for it to remain that way

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