CRPS Awareness photo challenge: flames and ice

Today’s photo challenge is to post something which includes flames, as they are often used to symbolise the burning pain experienced in CRPS. As I created the firey flaming CRPS awareness ribbon the other day I have put together another couple of info’ posters using that but I have made a point of adding in something else so that more of us CRPSers feel represented.

Many of us experience a different kind of burning. An icy burning. Sometimes it occurs as part of the CRPS doing it’s thing in our affected areas and sometimes it is triggered by an external source (for example I have to wear gloves to get anything out of the freezer coz it burns so much). (Wow, that’s not a good font to write about burning in, it looks like it says ‘bums’, oh dear)!

Of course there’s not really a ‘one or the other’ scenario. Despite recent research rumblings about ‘hot’ or ‘cold’ CRPS as either potential subtypes or as a way of referring to acute and chronic CRPS, many of us experience both the hot and cold burning. So for a large percentage of CRPSers the hot and cold representations are a truer representation of our personal experience with the condition.

Anyway, I have created two more info posters using exactly the same info’ but with an additional cold theme. One with an iceberg, and one with a background pattern of the icy frost that forms on glass. Here’s hoping you like them.

 

Firey ribbon, iceberg, graded background, info poster

 

Flaming ribbon on iced glass info poster

 

I’ll add them to the Fbk blog page as well so that if you feel they are useful to share they are at least easily accessible.

Much love from me,

x

CRPS Awareness photo challenge: my firey flaming CRPS ribbon

Day 25: to design something with the awareness ribbon on it.

I already created something simple earlier this month (which I haven’t got round to posting yet because I was running behind on the challenges) so I got stuck into the challenge this time creating a CRPS orange ribbon from a pic of fire as fire is often used as a symbol of the CRPS burning pain. Although there is also the icy burning pain as well as the deep bone pain and more, but the flames are a recognisable shorthand symbol in the community of CRPSers and their carers.

I’m uncharacteristically proud of my flaming ribbon creation! X-) It turned out better than I thought it might. So I went on to cteate this shareable poster from it. Hope ya like it. 🙂

Flaming ribbon info poster- photoshop saved

Whaddya think? Will it do?

I really enjoyed creating this. 🙂

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

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! 😉

x

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Awareness ribbon prettification

Hello all, I think I might be having a girlie day today! Knowing that the awareness ribbons for CRPS and Dysautonomia are orange and (dark) blue respectively, and bearing in mind that my body is one helluva complicated set of inter-related issues, I wondered to myself… how many of those awareness ribbons would apply to me?! If I scroll down the list of health issues they represent, could I cover my blog post in girlie ribbons? 😉

Orange for CRPS / RSD

Dark blue for Dysautonomia (Autonomic Dysfunction)

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Most awareness ribbons have several causes to each colour. Apparently the blue one covers a few for me as it is also listed as representing Restless Leg Syndome and Chronic Fatigue Sydrome. Neither of which I’ve been officially diagnosed with, mind you, they are a couple of those related aspects that I live with and have discussed with the doctor but it hasn’t ended up officially in my notes, (as far as I’m aware).

Another questionmark condition for me is Fibromyalgia. If I end up diagnosed with that one I will get to add a lovely purple ribbon to my collection. 😉

So anyway, I searched a couple of, hopefully, more reliable awareness ribbon lists (you know how these lists can vary from each other from time to time!) and this is the pwettiness I divined from them…. 😉

Burgundy for disabled adults

Grey for asthma

Green for mitochondrial disease

White for invisible illness

A funky zebra pattern for rare diseases. Kinda grabs the attention, eh? 😉

Gold and silver for tinnitus

White lace for osteoporosis

Periwinkle for Irritable Bowel Syndrome (IBS)

Light blue for chronic illness

Silver for brain disorders and neurological disabilities

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One of the lists even noted a Teal ribbon as referring to knee injury awareness… blimey, that’s specific! The other site didn’t back this up, but it’s a lovely colour!

So there you go, prettification of my blog with girlie ribbons. That’s enough ribbons to be going on with, methinks, hehe

Love and hugs to you all, x