CRPS Awareness Month

Yes, I’m back! (Kinda)! After having to come off my meds in preparation for the two days of hospital tests in London, (blog posts on this to follow when my brain returns to me 😉 ), and what with all the travelling, the tests, more travelling, pain flare as a result, worse symptoms whilst off the meds, and now the side effects whilst going back on the meds…. well… it’s been interesting!

Thank-you for your posts and comments in the meantime, I have been reading them and replying whenever I have been able to do so. You are amazing, xx

The worsening Dys’ symptoms, (especially the near-fainting and nausea), meant that I was unable to keep up with my physio’ sessions which I would usually use to keep my pain at lower levels, (as much as is possible, anyway). And of course the lack of physio’ had the knock-on effect of an even greater pain flare. But, as you know, I am a stubborn old boot!

So, after five days of no proper physio’ I decided that I’d ask Magic Dude to drive me somewhere in the hope that we could find some gorgeous Autumn trees, (or Fall trees to those of you not living in quaint Britain 😉 ). With the added twist of me deciding that I would wear bright orange! This is because November is RSD / CRPS Awareness Month in the USA, and it tends to get shared around the world via our informal online network of patients. One wonderfully positive friend even convinced all of her colleagues to wear orange at her workplace, and she was bowled over by how enthusiastic and supportive they all were. Fabulous stuff. 🙂

So as some of us were nattering online about getting dressed up in orange and taking pictures… off I went, in my orange coat and an orangey dress, in a search of an orangey, (or at least Autumnal looking) tree!

I had my hood up some of the time as the sun was glorious and making me squint a lot! Magic Dude took this pic’, but the way the hood hangs it kinda looks like I’m a distant cousin (non-evil, of course) of the Dementors! (Harry Potter ref’, sorry 😉 )

It really does make a difference having an awareness month. It’s hard for friends to hear about our conditions all year round. It’s exhausting for us living with the condition, but it’s also wearing for our friends in a different way because they feel so helpless when hearing how we struggle because there’s not really much they can do to assist. (Unless they are near enough to come round to make us a cuppa and have a lovely chat of course)!

This time last year I was not yet blogging, but I posted loads of information on my personal Facebook page during November. Quick and easy stuff for the most part: informative profile pic’s (like the McGill Pain Scale, or a diagram of how CRPS ‘works’, and so on), with daily snippets of info’ about my life with CRPS and the odd weblink to more information. Some of my friends were wonderfully supportive and even changed their own profile pic’s to spread the word. A couple of friends even went away and read up on the condition themselves.

The best thing of all is that many of my friends now know that taking extra vitamin C after operations and injuries can reduce their chances of getting CRPS.

And the bestest thing of all is finding that one of my long term friends, (who I haven’t physically seen for years, but you know how that doesn’t matter when it’s a ‘proper’ friendship 😉 ), has stocked up on vitamin C for his recovery period after an operation. Wow! To think that this information can help others avoid the complex condition I have ended up with is so truly fabulous. 😀

(By the way, the operation consent form he was asked to sign did note ‘RSD’ (old name for CRPS) as a risk factor but, as he rightly pointed out, it did not give any information on a) what that is or b) how to minimise the potential risks. Fingers crossed the strong research will eventually be reflected in information given to patients for their own well-being, but meanwhile… keep spreading the word, xx)

And my search for an Autumn tree did result in finding one that I could actually stand up underneath…..

What a glorious day it was, I must make sure that I have a Blue physio’ walk sometime before Dysautonomia Awareness month in October next year! 😉



2 thoughts on “CRPS Awareness Month

  1. Pingback: Strength and weakness | Elle and the Auto Gnome

  2. Pingback: Neuro-vascular autonomic consultant in London | Elle and the Auto Gnome

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