Introducing Signage Seymour (and a wobbly guy)

When I was first creating this blog I sat at Magic Dude’s old laptop and had a discussion online with two of my besties – my Local Friend and my fabulous university housemate. I was running potential blog names by them and we settled on the name by a circuitous route which involved much laughing and being silly. But before we could even get started I had to explain my thinking… first of all I had to divulge that ‘Auto Gnome’ is my own daft take on ‘autonomic‘!

What followed included many imaginative ideas about how to use gnomes as part of the blog and yet I have not actually done so. How remiss of me! 😉

To be honest, (<whispers confidentially>) I think gnomes are pretty disturbing! And I wouldn’t want something like that to take away from the main themes and point of this weblog. But there is someone who has been waiting in the wings a long time and who I really must introduce, although I shall be keeping him on a short leash so that he doesn’t get out of hand!

So, let me delay no longer, and introduce to you…. Signage Seymour….!

Original

Signage Seymour with his original sign

Har!

Seymour was a gift from my Local Friend and we decided that ‘Go Away’ was not really the message we wanted him to send! (Unless it was aimed at ill health of course)! So, as this month is CRPS awareness month, Seymour is now holding the banner pic’ currently adorning the blog’s Facebook page (and it is available for use if you want to purloin it), x

Signage Seymour, awareness pic 2013

Seymour is not a mascot for CRPS, though. Or Dysautonomia. Or hypermobility.
He’s more of a helper who holds important signage to allow me to get on with the writing bit! He has no battle cry simply because he does not go into battle. He’s more of a hold-your-coat sorta guy.

I like to think that I have a battle cry, mind you. When I feel like yelling “onwards” or “hurrah!” I sometimes remember that (like The Tick) my battle cry is “Spoon!”

If any of my conditions were to have a mascot though, what would it be?

– Something that bounces back time after time after time after…
– Something that takes the pain and still gets up to kick some arse!
– Something that isn’t dangerous until it’s cage gets rattled too many times in a row
– Something with hidden depths, hidden strengths and a life others cannot comprehend

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So it looks like my mascot is…..

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………………………………………………………….a Wolverine weeble!

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Of course that means that the battle cry has to be an unintelligible at-my-wit’s-end / this-is-the-last-flipping-straw “Raaarrrrggghhh!” Hehe

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Wolverine Weeble

A quick sketch on an egg is kiiinda like a weeble, right?!

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And here’s the Facebook banner pic’ in case you want it to use..

CRPS awareness month, 2013

..or you can get it directly from the Facebook page, x

Photo Challenge for CRPS Awareness, Day 29

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 29 – A picture that can always make you smile

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Pictures that make me smile… ooohhh, lots of piccies make me smile. PIccies of Magic Dude, of my friends, of my Bruv and his girlfriend, of Magic Dude’s family.. they all make me smile. 😀 Even the pictures of those who I have lost from my life make me smile at the happy memories from before the health took it’s toll that way.

I also create piccies that make me smile. I don’t mean beautiful photography… my wheelchair based ways of point-and-click-then-crop-it-later are really ingrained still! I often take silly pic’s, usually for the blog, including some not yet posted. They make me smile when they’re being taken more than afterwards mind you. There’s something about posing for some bizarre pic’ outside in full view of my neighbours which make me chuckle, tee hee.

Today I spent my physio’ time attending a practical seminar on Tai Chi with sword. I’ve never done any sword work before so I’m a total newbie at it. The uncontrollable variable seems to have been the arrival of the swords at martial arts HQ…. they didn’t arrive in time. So our teacher valiantly taught us with what we had to hand in the gym – some short poles. Rather than borrow one of the poles to practice with in the meantime I realised that it would be better to practice with something longer. There are moves where the sword touches the back of the arm and/or shoulder, plus the different lengths feel different to work with. So I looked in the footwell of the passenger side of the car and there was my inspiration….. my fold-up walking stick! Hehe

So here’s my latest silly pic’, it made me smile when it was taken and maybe it’ll pass a smile onto to you as well. 😉

Tai Chi Walking Stick

Please imagine that my non-sword elbow is actually at the same height as my non-sword shoulder! (- I always notice the wrong stuff when I look at piccies of my Tai Chi). But hey, I guess I am a sword newbie…. plenty of time to brush up on technique yet! 🙂

So there you have it, Walking Stick Tai Chi. Maybe this is my new Yoda style?! 😉

x

Photo Challenge for CRPS Awareness, Day 26

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 26 – A picture of laughter you gave to another

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Hmm, tricky. Our individual humour varies, and the event that causes the laughter tends to not get caught on camera. I tend to share silly pictures on social networks that make me laugh because it may make some of my friends laugh too. I have daft conversations with Magic Dude and we each come out with responses that make the other laugh. Sometimes I’ll take a photo’ of something that I find comical or bizarre and share it. So here’s an example of one of those, this pic’ is of a random chuckle moment that I shared online…

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Marvel Avengers Ass

The mind boggles!

In fact this film experience was a wonderful sharing of laughter and enjoyment with the rest of the audience. So much so that I wrote a post about. 🙂

x

Acrostic kinda-poetry

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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Frank Herbert - We are torn and frayed but love remains

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x

If CRPS was an animal….. (tee hee)

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.

CRPS critter

Crazy Sock Day!

Yes, you read that correctly… today is Crazy Sock Day, 2013! 😀

Crazy Sock Day 2013

And, yes… I am wearing my mismatched, loud stripey socks as I write this…

Crazy Sock Day 1

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 😀

Melanie Dickens, Crazy Sock Girl, to post on blog with permission from her Dad Shawn, x

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?

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! 😀

Crazy sock hat thingy and tea

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!

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

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

“Keep Calm and….”

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

My Gnomic adventure in pictures

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