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.
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.
“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!
“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!”
– Carly Goebel, Oct 2012