Carefree Realists Purposefully Serene – yup, full of contradictions, just like CRPS!
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Elusively complex.
Like a jigsaw puzzle with the
Little corner pieces missing.
Every day is
Apt to present a
New confusion, a new
Dilemma
To test our mettle.
Holy macaroni, Batman!
Ever tried explaining
An alternate
Understanding
To
Others who are more ‘qualified’ than you?
Gah!
Not an easy journey.
Over the years, my
Me returns.
Empowered.
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x
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.
Yes, you read that correctly… today is Crazy Sock Day, 2013! 
And, yes… I am wearing my mismatched, loud stripey socks as I write this…
This is an event created by young Melanie Dickens to raise awareness about her conditions CRPS and Gastroparesis.
The premise is beautifully simple – wear crazy socks and when someone asks you why you’re wearing them you can tell them. Simple see? Go ooooon, you knooow you want to
Super Melanie herself: Superhero and Gatherer of Excellent Socks
(picture posted with kind permission from Crazy Sock Girl’s Dad aka Super Shawn)
Here’s Melanie’s Facebook page created for this year’s piccies to be posted upon… https://www.facebook.com/CrazySockDay, and there’s plenty of piccies turning up on there already 
There’s still time people, get your socks and cameras out and join in
You can even post your own crazy sock piccies on your social network pages, that way your friends can see them and gain helpful awareness even if they aren’t online today.
It’s fun and it’s easy to do. I suggested this event to my friends and readers on Facebook. It’s something anyone can join in with, it takes very little effort and you don’t necessarily need to know loads about the conditions, it’s an awareness thing. It’s the amount of heart that you put into it that counts. If someone asked me why I’m wearing crazy socks then I’d most likely science them into a brain-overloaded stupor with my first coupla sentences! So trust me – you wouldn’t be bad at this at aaall.
So my suggestion to my friends (who I can’t expect to know aaaall about my health the way I do, of course!) was that it would be a great way to let people know that they can actively try to avoid getting CRPS themselves (hurrah! fantastic knowledge for friends and loved ones) by taking vitamin C after any injury or operation (see the top of this page for more info) and also by not putting ice straight onto their skin (always wrap it in something like a tea-towel) and vary it… on for 10 minutes, off for 10 minutes, and so on (as ice switches off part of the autonomic nervous system if the skin temperature drops below a certain point and when it’s switches back on again that’s when the troubles become apparent. See? Science-induced stupor alert. Somebody stop me! 
). (For people who already have CRPS, well, we steer clear of ice altogether as it’s really baaaaad news for the majority of us).
Crazy socks *and* tea, could this day get any better?
My lovely Magic Dude good naturedly takes his role as Back-up Blog Photographer all in his stride. Although I do get a few funny looks when I ask him to take a piccy of me looking slightly, erm, unusual! And that little amused look cropped up when I calmly and seriously donned my kinda-sock-hat-thingy!
Erm… yes, well, it was a thought. Don’t think it’ll catch on, though.
I don’t usually get to go out on a Thursday. Wednesday I’m at home recovering from my Tai Chi clas on Tuesday, and then Thursday I’m at home preparing to be able to get to Tai Chi on Friday. So there’s no-one to ask me about my socks today, even the postie had no reason to knock on the door and get sock-blinded! Good thing I can wear them on here as well, then, eh?!
Today was a little different though. I got a letter through the post advising me that disability benefits peeps are taking a little longer to process my Disability Living Allowance form as they’ve asked for a letter from my consultant…… who I haven’t actually seen yet! *sigh* I have, however, had two days of preliminary tests in his department so I wrote a responding letter basically saying… ‘hey, he hasn’t even seen me yet, but if you get any info’ on the tests send me a copy coz I know nuffink as yet. Oh and P.S. you do know he’s only looking into the Dys’ stuff right? I don’t have a CRPS consultant as I’ve been living with it for over 13 years.’ Hopefully that’ll clarify things for them (I’ve told them all this already, but hey, reiteration often helps the penny drop, eh?)! Blah blah blah, enough of the serious, get back to the Crazy Socks, woman!
Having to put my reply in the post meant that I had to allocate part of my morning physio’ to getting to the post box and back…. whilst wearing my mismatched socks! Yay!
Totally normal!
I didn’t meet anyone to talk to, but I did get beeped at by a passing car. Not sure if they were trying to let me know that I’d put odd socks on or whether they were beeping a beware to other drivers about the imminent brightness they were about to encounter, but hey, the socks got noticed!
Well done Melanie for creating a day that many people join in with and which is so effective owing to it’s simple and cheerful foundation. Wonderful stuff honey, and congratulations on your third Crazy Sock Day. I look forward to many more, x
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
The other day I promised one of my pals that I would post another link to a website where you can create your own stuff…
Today the inspiration is from good ole “stiff-upper-lip” Blighty-ness!
Back in 1939, after the outbreak of the first World War, the British Government decided that morale-boosting posters would be a positive addition to the British people’s mental resources. The most famous being the “Keep Calm and Carry On” poster, headed with the symbol of George VI’s crown.
Now, here’s the exciting bit….
There is a magical place where you can create your own versions of the poster!
I was mulling over what would be appropriate wording to relate it to my life and conditions. In the end, the first one that came to mind was the one that was truly ‘me’… When I don’t know something I go away and learn about it, whether it’s about my health or any other random interest. I spend lots of my sparse and infrequent on-the-planet-and-almost-upright time on the laptop hooked up to the ‘net. I have a hard-drive full of research papers and articles on CRPS, Dysautonomia, Tai Chi and various other, seemingly random, topics…
So this poster says the most about me, and makes me laugh at the truth of it….
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Bwahahaaa, it’s meeeee!
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But it’s far too much fun just to stop there, of course, so here’s a few more….
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And the most terrifying of all……
Tee hee
Of course a fat load of good I’d be in a fight…. “Can you come at me in slow mo’? I don’t do fast. Oh yes, and if you could just wait a few minutes, I’m feeling a bit lightheaded”. Yeeeaaah, I’m truly terrifying, me.
If you fancy inventing some of your own posters, then just pop over to this address….
http://www.keepcalm-o-matic.co.uk/
x
After enforced writing and thinking downtime, I am back! I have spent several days in a malfunctioning state of being, hoping that my brain and body would recuperate so that I could get on with things again. I have even, (prepare to be shocked), ….attempted relaxing! (Gasp)!
I told my brain that it could chill out and watch ‘The A’Team’ and ‘Serenity’. But I still attempted to keep up with Facebook stuff, and got downhearted every time my brain fell over trying to read or reply to basic messages. I had some great advice on what foods to eat, found that I’d run out of both kale and cabbage and that I wasn’t safe to drive to the shop. But I did have cheese… so I had home-made spinach and ricotta cannelloni instead. (Not necessarily lots of the right kind of cheese, but it was very nice nonetheless). Oh, and a little bit of left-over easter-chocolate for afters! I guess I really need to look into the effects of various foodstuffs, but that’s a job for more viable thinky days.
When my brain eventually fancied some written words it was allowed to read some of Terry Pratchett and Neil Gaiman’s ‘Good Omens’!
To keep the legs working I attempted most of my useful do-stuff activities during my morning physio’ when I’ve been more capable, and then my second physio’ of each day involved vaguely wandering around to gently exercise my legs, (but otherwise being useless). I have been able to think a little more clearly over the last couple of days, although I had a major fainty-pukey day yesterday and was very grateful for the support from Magic Dude and my Tai Chi teacher. Despite that and the endless headaches, slowly but surely I have found it less difficult to read and write as the days have gone by.
So I’m gradually working my way back to my version of ‘normality’!
The pictorial silliness occurred a couple of days ago. Magic Dude asked whether I would prefer to do something different with my second physio’ and despite usually being firmly of the “I don’t mind” ilk, I actually had a definite request. Those of you who have ‘liked’ my Facebook page will already know that I went out with camera, tripod, helpful photographer and a bright red gnome-hat to create some Gnomic pictures for the blog! I only had to sit still and look at the view, so my body could handle it. And I had a bit of a laugh at the thought of how daft we must’ve looked to the local dog-walkers!
The feedback on Facebook was fun and cheering. So I’m now uploading the pic’s to the blog to see what you think of the results of my little adventure!
I’ve got a feeling that there may be more of these in the future. I may even look to acquire a red waistcoat to add to the Gnomic silliness.
Let me know what you think of the banner photo’ and profile pic’. I’d love to know your thoughts on these.
Banner photo'
Profile pic'
And here’s another piccie that I love, (although it does look like I’ve got a hand growing out of my face)!
Elle and the Auto Gnome
So that’s what I got up to during my writing hiatus. I hope that my interim pictorial silliness has given you a bit of a chuckle. I will get back to the WEGO writing Challenge, but I’m still struggling to write and anyway, I wanted to share these piccies with you and ask you what you think of them!
Love from me, x
For a bit of fun!
Well, it’s Day 6 of the Health Activist Writers’ Challenge and boy, my brain is tired! Writing every day is certainly a challenge when you’re battling through the day with health conditions already! I enjoy the process of writing and creating, but I’m grateful for some less emotional-writing days. Today’s suggestion is a fun one, there’s a few more ones like this coming up. I couldn’t resist doing a bit of research into the topic, though. (Of course)! x
I’ve been delving (briefly) into the world of Haikus.
Haikus are a type of Japanese poetry that date back to the end of the nineteenth century. In the western world haikus are simply three lines that consist of 5 syllables, 7 syllables and 5 syllables, respectively. They don’t have to rhyme, and their simple format is intended to add something intangible to the experience of the poetry.
The Japanese language is so different to English that there is some argument that to attempt to achieve a similar effect the 5-7-5 syllable format should be reduced to a 3-5-3 format, which gives you some idea of how brief an entity they can be.
During a bout of insomnia I came up with the following daftness. (It was really good at getting my brain to switch off and let me sleep, too! Who needs to count sheep when you can count syllables?)!
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I was ‘normal’ once,
Eek! Dysautonomia,
Now unusual.
I started this blog,
To help make a difference,
But it helped me, too.
I love Magic Dude,
He makes me smile and chortle,
Worth his weight in tea.
Sunshine makes me feel
Like the burden lifts awhile,
The warmth eases pain.
I love to drink tea,
I’d drink it all the day through,
If my legs allowed.
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And speaking of tea….
x
After valiantly creaking home in slow-motion from the asthma-clinic appointment that I’d forgotten all about and therefore not included in my morning physio’ (doh!), I allowed my legs to pretend to be heavy leaden things. I left them to it on the proviso that they were not to introduce manic pain levels because I was ‘being good now’, honest! So I sat at the laptop waiting for my body to get happy enough for me to think more coherently, whilst enjoying a friend’s nutritional advice on the health benefits of biscuits and booze!
I eventually ended up writing about something I enjoy, which keeps my muscles more relaxed and so will hopefully reduce the level of the, now imminent, pain flare-up.
Lovely.
Then…..at half three in the afternoon….with the sun streaming in, and the open window letting in the fresh air and the birdy/traffic/sort-of-strange-chopping noises from the Urbanised Great Outdoors…..my neighbour came home and decided to demonstrate their ability to feign hosting a party for stressed out, anxious people with jack-hammers.
It probably sounds like music in their house. And I’m sure they’ve had a long day at work and all…..but…..the bass noises sliced right through my brain! Not because of any migrainey tendencies today, just because it was distracting erratic bass noises interrupting my thought patterns. I had to give up writing.
So….I decided to introduce my neighbour to Machine Head’s latest! Anyone that’s ever dabbled in rawk music should give it a whirl.
I knew it wouldn’t be long before my noise sensitivity caused me to turn it down again but, as I couldn’t stand up or walk at the time, it was a quick and easy way to let them know that someone was at home! They’re a nice couple, we each know how much noise travels through so we just let each other know that we’re at home and it’s all fine. (Unless they’re having a party, then Magic Dude and I end up wearing our best sad-faces and reaching for the ear-plugs).
I surprised myself, though. The sudden change from gentle outdoor sounds to rockin’ guitar had an immediate effect on me in a rather epic manner. I went from being a quiet and responsible blogger, to….
….wearing an idiotic grin whilst attempting a whiplash-flare-avoidance version of head-banging and waving my ‘devil-horn’ hands at the ceiling in grinney-happy defiance!
All whilst stuck in bed, legs totally immobile and buried under both duvet and laptop table!
Yep, I'm probably too old and creaky for this, but it made me larf!
Yes, I am Elle, I live with the Auto Gnome, and I have a problem, hehe…. I lurve my music!
It makes my soul sing, my mouth grin, my eyes twinkle, and I feel all kind-of excited inside my chest whenever I get to turn the music up. Infrequent and rare as those opportunities are. Perhaps that’s why it has such a strong effect!
Once I cross over the loud-music event-horizon the behavioural outcome is likely to surprise anyone unfortunate enough to witness it!
Ahhhhhh, but I feel soooo much better for that! And I’m only on track 3!
Music is good for my soul!
Not everyone likes to rawk, so here’s the chilled out acoustic version of ‘Darkness Inside’. I don’t usually pay much attention to lyrics, it’s the sounds that make me smile, but this one is about how music can fill our souls and set us free. Ahhhhh, x
Of course, if you’re really intrigued about the original version, then here it is….
It’s turn-it-up-and-shout-along material, hehe
x
I was up late and drawn back to the ‘create your own superhero’ website…I decided that, despite the advice of ‘The Incredibles’ Edna Mode…Super-Elle should try out a cape…..
I suppose that really the inky-black sword is Gnomes Bane. So this must be Super-Elle, or the CRPS Avenger, or the Dys’….er….Dys’-tiller (?!) or sumfink. Yep, I was lacking in sleep, can you tell?!
And here is the fabulous Edna Mode, daaahling…
Did you know that there are some CRPS patients out there who use ‘RSD Angel’ as a reference? The patients strive to be the best they can despite their crippling pain levels and, frankly, anyone in that situation needs a bit of recognition and a bit of a lift or else keeping going under those circumstances gets really untenable. So why not lift each other with something like a reference to them being an RSD Angel. If it helps, it’s worth it. So anyway, yep, you’ve guessed it, I decided to create my own CRPS superhero styleee angel, hehe. I’m about 12 years old inside my head, aren’t I?! ;-)
And then, just coz it was nearly midnight and I needed to keep doing stuff for a bit longer to beat the insomnia, I created Billy, too. She’s rock ‘ard, by the way…
Wee-eeell, once I’d given the superhero some eyes, a nose, etc.. it was quick and easy just to change clothes and colours. And with very little brain usage… hence the helpful assistance with the aim of trying to get sleepy.
I got to sleep really quickly after this. Not sure that it should be a regular thing.. I’d end up with every possible superhero filling up my hard-drive if I did that!
Go-awn, you know you want to! ….
http://marvel.com/games/play/31/create_your_own_superhero
Super-gentle hugs from me, x
