Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

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P.S. Here’s a version in multiple languages. Just because. 😉

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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?! 😉

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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. 🙂

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Photo Challenge for CRPS Awareness, Day 03

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

Day 03 – A picture of something that makes you laugh

What keeps me laughing is having a view of life which is skewed towards the silliness side! I like seeing the funny side of things, and that includes the funny side of my condition and the bizarre things I find myself doing or saying sometimes, as well as having silly impromptu conversations with friends to make each other chuckle, laughing at the way the world is portrayed through amusingly stereotyped adverts, laughing at any opportunity, really ;-D

Laughter is one of the things that carries me through and silliness can help to facilitate that. So here’s a pic’ of a moment of silliness before ‘planking’ got dangerous and it was just daft people like me playing ‘The Lying Down Game’ 😉

Lying down game

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Strength and weakness

Many people have said to me “You’re so strong, I just don’t know how you do it”, and then they go back to their own everyday lives and I carry on with mine.

Am I strong? Or am I just dealing with the hand that I was dealt?

When you’re living every day with symptoms that cause severe pain and severe lack of function you have to find the strength from somewhere to just keep battling through the days. The experience of living with a chronic condition is so completely and utterly relentless that it is all too easy to end up steamrollered into the ground.

So yes, I am strong, but it’s because I have to be. There’s no other way I can live with my condition. I cannot have a break from it. I cannot let up for even one day. It is a full-time and round-the-clock job trying to keep the balance between some level of function and terrifyingly severe levels of pain and autonomic distress.

You’ve probably heard the term “CRPS Angel”, well here’s my own Marvel-esque version 😉

Do I ever get used to it?

Yep, I do actually, but only in the sense that I can’t really remember what the experience of everyday life was like before I became chronically ill. This is my reality now.

But don’t make the mistake of thinking that means that everything is okey-dokey now. It’s just as hard as it ever was, it’s just as relentless and just as upsetting. But it’s one of those things in life where it doesn’t get ‘easier’ as such, I just developed new skills and ways of coping with it all. I’m good at dealing with the health stuff that I have come to terms with. But it’s a continuous balancing and re-balancing act because, as much as I’ve developed skills to cope, I have a progressive condition.. so just as I think I can just about handle this, another new deterioration occurs and I get knocked off kilter again.

So it is not a solid strength, it is a flexible strength. It has to be. I never know what’s around the next corner, but whatever it may be, however shocking or upsetting, I have to react as calmly as I can or my nervous systems will go haywire rendering me physically incapable and cognitively incompetent. Whereas, if I deploy my range of skills the moment trouble hits I then stand a chance of reducing the negative effects to some extent. I also have to employ skills in how to claw my body back to its usual levels of physical ineptness and my now standard levels of brainlessness.

Strength and weakness seem like fairly straight-forward terms, but they can be used in different ways.

For example, the first thing that I think of when I ask myself what my weakness is…..  that I have a weakness for tea!

In more real terms I have a physical weakness because I cannot exercise like I used to (no aerobic exercise at all anymore, unless a fight-or-flight induced fast heart-rate making me come close to passing out counts?)! And my body doesn’t work the way it should in things like getting the oxygen to places it’s needed.

In emotional terms I am strong because I have to be, but if someone I had never thought would ever hurt me tells me that they think something bad of me then it’s not just the wonky fight or flight that’s the problem, it’s also the down to earth human emotional response as well. I guess that is simply a mixture of being neurologically compromised and of being human.

Distraction tools!

A big strength reducer can be when we lose people from our lives. Nearly all of the fellow patients I’ve met have problems with loved ones not understanding their condition, and when the neurological changes start kicking in before we are actually aware of what is going on.. that is one of the trickiest times for misunderstandings because they can pass over our heads like they never happened. And when we find out afterwards the shock is indescribable. We wished we’d known or realised or understood at the time, but we missed stuff. That’s all there is to it. But whole relationships can be lost over this transition period. And the loss itself can make us weaker, too. Not just the loss of colleagues, friends and even family, but also of a work life, a social life, and more besides. Our lives change so utterly that the change is hard to come to terms with. We have to fight harder to battle the grief of loss and, in the case of misunderstandings, lack of comprehension about what’s happened as well as all the rest of the usual everyday chronic illness stuff. At those times we tend to go under for a while. When I went under I resorted to discovering Magic Dude’s games console! Getting lost in a game was the only way I could distract my mind from the emotional distress and pain because the game continuously demanded my attention. Strength and weakness play their parts, and not all ‘weakness’ is bad or unusual. It’s all change and we work our way through it to come out of the other side.

With greater knowledge of our condition comes a type of strength, because it brings us more control in the sense that we don’t have to float about floundering as much any more. We can explain to our loved ones what’s happening and why we don’t always understand things, why our condition affects different parts of the body, why it’s neurologically based, and so on. We can source and print off research papers to help our doctors understand what we have learnt about our condition, (after all, we are learning about an area which is more specialist than they are used to). We can be advocates for our fellow patients, sharing our knowledge, sharing the sources of information, and understanding what we each are going through which reduces the isolation of the fight. And in reducing the sense of isolation, we feel stronger still.

But we are only human, we don’t have endless wells of strength to draw upon any more than anyone else has, but somehow we have to find a way to keep going.

So I use humour and general silliness! I laugh at the ridiculousness of the developments, even as I feel like crying. Sometimes I’ll be crying and yet also still laugh at the ridiculousness of it all. I take the mickey out of myself, I laugh at stuff on TV, at daft mis-marketing on adverts, at things that Magic Dude comes out with, and at him when he has a rant (he rarely does a serious rant, comedy rants are far more fun!), I come out with stupid comments to make him laugh too, and I’ve developed a bit of a skill in comedy rants myself. Then of course there’s the laughing when the tremors occasionally get so bad I miss my mouth, or scatter my coffee liberally across the floor. And when I come out with wrong words, mixed-up words and non-existent words. I laugh when I can easily find long and complicated words but can’t find a word for something really ordinary. I laughed at Magic Dude’s expression when he saw how orange the coat was that I wore for my CRPS Awareness physio’! (tee hee) And if I didn’t laugh I’d struggle a lot more. It’s the laughter that keeps me in touch with who I am without this disease, and how I was before it. It’s part of what makes me ‘me’, so I grab every opportunity I get. Laughter keeps me strong, it helps me to keep my perspective and to distance myself from troublesome things enough to keep on going.

I’ve said it before and I’ll say it again… tea and silliness rocks! 😉

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Audience participation: a shared experience

Once in a ‘blue moon’ I do actually get out of the house for something other than  hospital appointments and physio’! Last week I went to the cinema with Magic Dude and our lovely local friend. And yes, we did go to see ‘Avengers Assemble’. And it was a fab’ outing. 🙂

The film was good fun with plenty of action, one liners and comedy moments. I’m sure there are plenty of people out there that don’t like that sort of thing, but I love a bit of action/sci-fi and all the more so if it is done with a bit of intelligent awareness sneaked in. (I loved the effect of Kenneth Branagh’s Shakespearean background on the ‘Thor’ film)! There were some great quotable lines in the Avengers, in particular I chuckle when remembering Bruce Banner(aka Hulk)’s understated but perfectly timed response as a result of Tony Stark(aka Iron Man)’s childlike verbal pushing and physical prodding… “I wouldn’t have come on board if I couldn’t handle… pointy things”. Oh, it’s funny when you hear it, honest guv’! 😉

But I’m not writing a review. I’m just saying that I actually got out of the house, and that I really enjoyed it! I haven’t been clear-headed enough to even be able to drive for long, and a week ago I was missing hospital appointments and physio’s because I just wasn’t safe enough to drive at all. So getting out was fantastic and in doing so I also saw a film which I enjoyed immensely.

Okay, so yes I couldn’t follow all of the plot because my brain couldn’t always keep up. But it’s the kind of film where you can enjoy the moments that you do catch and the plot takes care of itself! And I suspect that in the not-too-distant future I will have to wear noise-reduction ear-plugs to the cinema to reduce the ear pains. It’s a shame that I can’t get sucked in to the experience any more because my heart-rate goes up and down a lot, and in doing so it very quickly brings on symptomatic issues throughout the film. So I had times where I thought I might throw up, and times where the chest pains and/or pounding heart were really distracting. I had a packet of mints in my bag to calm down the nausea and I’m good at working through pain. The legs pain didn’t actually play up too much, but then again we’d booked ‘premier’ seats to assure the extra leg room. Or perhaps it’s just that it doesn’t seem so bad when all the other symptoms are taking centre stage!

So, yep, not even something as simple as going to the cinema is without it’s complex array of problems any more. But nonetheless, I really enjoyed the outing.

“Marvel Avengers Ass”? The mind boggles!

But what made the evening stand out to the point that I wanted to share it with you was this: the audience participation. I’ve not been part of an audience like that for a long while. Magic Dude doesn’t do theatre, and films have a harder job provoking the kind of response that theatre creates. We get the shared geek feeling when we’re part of the nerdy group who hang back at the end of the hero films to see if they’ve included a teaser at the end of the titles! But this was soooo much more. The whole audience regularly burst out laughing. There was one moment in the film where, (and I shan’t tell you when, in case you’ve not seen it), the whole audience burst into spontaneous applause. The vibe was so warm and inclusive. We were all sharing the joke, enjoying the experience together. I spend so much of my life alone and isolated that it just enhanced my feeling of being part of something enjoyable. Of belonging. A shared experience. At the end of the film when the titles started going up everyone burst into applause again because they’d enjoyed it so much.

We get used to watching the same old plots and character types. We enjoy the films we see, but we are not surprised by them. There’s never anything new. It’s like watching a really big telly, with extra popcorn and lattes on tap. So to watch a movie that injects so much fun into well-known characters was refreshing and, frankly, a right larf. Life is too blinkin’ serious most of the time, it’s sooo good to set that aside when we can. 🙂

So there you go, my night out with shared laughter was really good for the soul. I was not very physically functional afterwards, and my brain was sputtering a bit, but it was a great feeling to share. It took a few days to fully recover, but it was worth it. I was really surprised that a film provoked that response, but it was definitely a pleasant surprise!

What a difference a shared laugh makes.

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