medieval madness revisited!

I can’t believe that this time last year I was in Spain spending the day at a medieval festival in the little town of Hospital D’Orbigo.  Or that a few short days will bring the one-year anniversary of the start of my Camino in Sarria.  The first weekend in June each year is a weekend of celebration in fabulous Spanish medieval style in Hospitale and people come from miles around to participate in dressing up, shopping, dancing, traditional games, displays of medieval life, fabulous food, jousting and general merriment overlooking a bridge steeped in history (and scaffolding along with most of the rest of Spain’s wonders that have seen a lot of history) – part of that history is said to have inspired the tale of Don Quixote.

Never having been to a medieval festival before (well, Australia doesn’t date back that far so it’s not a huge tradition here) I wasn’t sure what to expect but hoped it would be marvellous and I certainly wasn’t disappointed!  Here is a picture of the roving clowns performing a tale of the Camino – I got that much out of it at least even though I couldn’t understand most of it!!

The small town evolved into a riot of colour and sound and I spent several hours happily exploring all the festival had to offer.  My biggest dilemma of the day was what, out of all the beautiful things on offer, should I buy to commemorate the occasion and my Camino that I wouldn’t mind carrying with me for the 100+ kilometres of my journey on foot through Northern Spain.

I finally settled on a beautiful copper colour enamelled scallop shell necklace on a leather chain which I then wore for every step of my journey until I returned to Paris and family where such things are not really en vogue (in Paris that is, I don’t think my family would have cared!).

Looking through the windows today at the miserable weather, strong wind, rain and a gloomy, never-ending white cloud cover it is not hard to wish I was back there again in the sun and heat of the Spanish spring/summer but I have those memories and I plan to go back soon and make more – probably the same time of year again so I can visit Hospitale on that first weekend in June and re-live one of my favourite festival days to date! Here’s the original post from a year ago.

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Happy (belated) Blogiversary to me :)

Once again I have been neglecting my blog and now the 1 year anniversary from my first published post has been and gone – oops!  In my defence I have been rather busy doing things like study, socialise, volunteer with St John, make stuff to sell at markets and things and, of course, not being able to leave the house due to symptom flare-ups.  So all in all a productive month I think!  The dysautonomia stuff is being its usual lovely roller coaster but I am in a much better place with it than I was this time last year.  My medications seem to be helping stabilise it a bit and my cardiologist is, as always, amazing.  I have an exercise physiology session once a week with an awesome group of POTS girls which has proved to be entertaining so far – we have more classes that don’t end in hospital visits than ones that do and there is usually a fair amount of giggling and chattering during exercise.  I know the general theory is if you can talk you’re not exercising hard enough but it’s not that kind of exercise – it’s more pilates based using a reformer and other nifty machines.

But enough of now, this is the time for reflection, for looking back to 1 year ago and seeing where I was, what I was doing and how far I have come from there.  Well I think we can safely say I have travelled quite a distance.  Just over a year ago I read a book, a very inspiring book – a book that made me want to travel across the globe and walk in the footsteps of thousands upon thousands of others throughout the course of history.  In just over one month it will be a year since I got on that plane at Tullamarine bound for Europe and glory in the form of the Camino.  I had no idea what to expect, what wonderful (or otherwise) things would happen, what I would see and experience, what I would learn about both life and myself or who I would meet on the way.  I had been to Paris before so that wasn’t a huge leap, I was meeting up with family so it wasn’t really outside my comfort zone and I had a basic grasp of French (degraded over years of neglect from an intermediate grasp of French!).  The bit that came after would be the challenge.  I was so caught up with the excitement and magnitude of what I was about to attempt that I didn’t really think about what would happen when I was finally on my own – out in the world, in a foreign country whose language (beyond ‘Hola’, ‘Grazias’, ‘Buen Camino’ and ‘donde esta cajero automatico’) I didn’t know.  And how in the hell was I going to walk that far every day?

Some days now I don’t know how I did it, when I can hardly move from fatigue or when I can hardly stand because my heart runs a marathon and my blood pressure slowly gives in to the pull of gravity when I do it seems a bit surreal.  Did I imagine the whole thing?  But no, I was there, I have the mark on my arm and my name on a certificate that I can’t read to prove it.  Prove it to myself and the world so I never forget what I can do, what I have done and trust me, with something as crappy as a chronic illness like dysautonomia you need it.  And I really need to go back to the studio and get it touched up!  Oh, and I also have this picture!

The Camino was life condensed.  You could live a decade in one day – I am still not completely sure how or why but it happened.  You almost need a day of rest and reflection after every day of walking just to take it all in and do it justice.  And for anyone wanting to get a taste of the Camino without leaving home then the movie ‘The Way’ has just come to Australia.  Directed by Emilio Estevez and starring Martin Sheen it is a beautiful story about loss, grief, and really finding yourself in the most unexpected place.  I highly recommend it 🙂
Even though the part that I walked doesn’t actually feature in the movie – it’s been completely skipped over which is frustrating!  And sad as Galicia was beautiful in the spring, but I guess when you have over 800km to chose from you can’t have it all in the movie!

Better get back to work – I have a stall at an awesome market tomorrow and need to get some stuff finished!  It’s ‘Worn Wild’ – the alternative fashion market that comes to Melbourne twice a year.  I am so excited to be part of it this year!  Here’s a flyer – check it out!  And if you’re interested here is the link to my facebook page for my accessories company – Cherry Pie Accessories – which will hopefully be a company soon instead of a hobby!

That’s all from me today
Buen Camino everyone 🙂

I have confidence in sunshine, I have confidence in rain… Part 2

Sorry for the delay, the silly season got the better of my organisational skills!  So here are the final 5 steps for improving confidence including one bonus one for lateness!

6.  Treat yourself.  A bit like number 5 but also a little different.  You need to feel loved and special and if that means treating yourself to a massage, spa treatment, shopping trip, day off, holiday, puppy cuddles, sleeping in or something else you’ve been wanting to do for ages but didn’t have the time or didn’t think it was important enough – just do it!  Yep, we’re using the Nike slogan but that’s because it’s good!

7.  Learn to say NO!  This one is a pretty big undertaking and rather important.  If you have been pushed around and taken advantage of for years it can be hard to change the trend.  If you need a bit of help the issue has been addressed in many movies – ‘27 dresses’ is one of my favourites for this!  It may not sound difficult to a lot of people but it can be, think back to number 5 and remember to put yourself up there on your list of priorities.  Start with something small and simple and work your way up from there.

8.  Express yourself.  A lot of us often find that in the heat of the moment we have trouble saying exactly what we want to say to people who have upset us – this is completely normal!  It’s hard to say exactly what you want to say when emotion is involved, it’s way too easy to get caught up and forget your words!  So take a step back, think about it for a while and then come back and say what you have to say.  There is nothing wrong with re-addressing an issue later down the track once the heat has gone out of it.  Think clearly and concisely about exactly what it is that you want to say; exactly what you are upset about and why or what you want to talk about and why.  Try to separate the person from the action, it is very important so they do not feel like they are being unfairly targeted and respond in kind which can result in a bit of a kick to your confidence.  Emotive statements are great for getting across how you feel without sounding like you’re attacking the other person – for example; I feel sad/angry/hurt/offended when … happens/when you… so I feel offended when I believe there is racial prejudice going on at work.  And use specific examples.  It is important for people to understand how their actions impact on you – they may be completely unaware they are having any effect on you whatsoever if you never say they are.

9.  Practice, practice, practice.  Who hasn’t heard that one before!  Well it is important, the more you work at something the easier it becomes and the better you get at it.  You don’t have to suddenly throw yourself in the deep end, build up to it slowly and instead of avoiding situations of conflict, public speaking or other situations that make you nervous expose yourself to them slowly and make sure you’re prepared – not over prepared because then it is just as likely that you’ll keep getting prepared, be convinced you’re never prepared enough and then not do it!  Whenever I have to perform or speak in public, or even answer a question in a meeting or class I still feel a flutter of nerves but the more often I do it the easier it becomes.  12 months ago I went on a cruise with friends and there was a karaoke competition.  The first song I performed I couldn’t feel my legs – that used to happen to me a lot and I realised that I was just out of practice.  By the final round several days later I was dancing on stage during a musical interlude in my song (and I didn’t even know the song).  Practice, practice, practice!!

10.  Don’t sweat the small stuff!  Kinda along the same lines as ‘stop second-guessing yourself, point 4).  Lets face it, confidence goes hand in hand with stress and that little voice in the back of your head that worries about everything; what people think, what they say, whether you made the right choice, whether you are going to make the right choice and so on.  The saying ‘don’t sweat the small stuff’ is very appropriate but I prefer ‘don’t stress about the things you can’t change and focus on what you can’.  You can’t change the weather, you can’t make your tram run on time, once you submit that completed application you can’t make them pick you.  AND if you paint something the wrong colour you can always change it later, if you take a wrong turn you can always retrace your steps.

11.  (A bonus one!)  No one can do it for you!  No one is going to make your decisions for you, if someone stands up to someone else for you it’s not really going to solve your problem and make you feel better and when you do you’ll feel great in the long run (admittedly the first couple of times you might feel a little ill from the nerves and adrenaline but after that passes you can congratulate yourself!).

There are many situations out there that can affect your confidence and courage and many types of situations that can do the same.  Bullies range in severity from those who physically bail people up for money etc to those friends who unknowingly wax lyrical about a particular issue they feel very strongly about ad nauseum without realising they are making others uncomfortable or upset or just plain annoyed.  Taking this on, sticking up for yourself, questioning unfair treatment by others and making yourself heard can be difficult; particularly if it is not something you are accustomed to doing for whatever reason.

For me, many of the experiences I had growing up that shaped the person I am today were also completely confidence shattering and it took a long time to recover.  To put it briefly – a lot of shit happened and I learned from it because I was able to, because that is the person I am and the view I have but not everyone is the same.  I hate the saying ‘what doesn’t kill us makes us stronger’; it’s ridiculous.  Tell that to a victim of abuse, someone who has had to flee their country to avoid persecution and left their family behind, a mother who has had to bury her child or someone suffering from PTSD.  It’s not helpful in the moment so just don’t say it.  Some things that are hard we can learn from, we can become resilient.  But sometimes, some people just break and they’re allowed to, sometimes shit just happens and there is no sense in it and nothing good to learn. Humans are resilient but most of us can’t do it on our own, I couldn’t and there is no shame in asking for help.  The most important thing to do, the very fist step to becoming confident and happy is to be brave and say ‘I CAN’.

NaNoWriMo/50k for awareness – 3rd instalment

The music in the gym was pumping.  It was an upbeat, poppy, probably top-40 song blaring loudly through the multitude of speakers situated around the gym and the television screens showed dancers gyrating to the beat in brightly coloured clothes.  Sarah felt ok, she was at the gym, that in itself lent her some much needed energy – she really needed to get away from distractions and move a bit.  Not to mention she was meeting up with a friend and they were going shopping afterwards.  She waited outside the boxing circuit room for Vivienne and their instructor.  There were 8 other women waiting to go in and she passed a casual eye over them.  Most of them were quite fit looking, she had seen 4 of them coming out of the spin room when that class finished.

‘Suckers for punishment’ she mused to herself.  ‘Seriously, who needs to do that much exercise in one day?  That’s bordering on addiction!’  Then ‘wow, it’d be awesome to have that much energy!  Can’t even imagine what that would feel like!’
‘What are you muttering about?’  Asked a voice behind her.  Sarah turned slowly and found herself immediately enveloped in a hug.  ‘Sorry I’m late Sare-bear, couldn’t find my keys could I!  Then they turned up in the fridge.  Go figure.’
Vivienne was habitually late, lost or double-booked as, if she didn’t write things down in her diary, she wouldn’t remember them.  She was the most forgetful person Sarah had ever met but it was never malicious, frequently endearing and made Sarah feel somewhat better about her now faulty memory, which, before getting sick, had been almost freakishly fantastic.
‘It’s all good’ she replied to her friend.  ‘I figured something like that might happen so I told you the class started 15 minutes before it actually does – you’re right on time!’
‘You cow!’ Viv laughed, ‘good move girl, cunning and cheeky but a good move nonetheless.’  Sarah bowed
‘Glad you liked it.’  Then the instructor appeared.  He was tall and well muscled with a tribal wing tattoo on one tanned arm.

‘Welcome ladies’ he grinned as he opened the door and ushered them in.  ‘This is the first class of the series so I hope you enjoy it and continue to come back.  Now, anyone with any boxing experience?’  Sarah put up her hand along with two others; she had been learning boxing as part of her weekly sessions with her personal trainer that had been going on for 5 years.  ‘Right, 3 out of 10, that’s pretty good.  So if you could all pair up and grab a pair of gloves and a pair of sparring pads we’ll get started with the 5 main numbered punches.’  There was a scramble for gloves and Viv and Sarah were left with some that were a little big.

The class was tough.  It went for 45 minutes and was non-stop action throughout.  They boxed and kicked their way through countless combinations paired with squats, shuffles, sidesteps and jogging.  By the time it finished they were exhausted, sweaty and breathless but very pleased with themselves.
‘I think we’ve earned a coffee and some shopping’ Viv gasped as they left the circuit room on slightly wobbly legs.  ‘I honestly don’t think I’ve worked that hard in ages but gee it was awesome!’
‘Completely agree to both statements’ Sarah agreed with a grin ‘your car or mine and where shall we go?’
‘Ooh, Greenvale I think and I’ll drive, it took so much effort to find my keys this morning I might as well put them to use!’ Viv laughed.  They drove in convoy to Sarah’s place just 5 minutes from the gym and then set off to their favourite shopping centre in Viv’s little car.
It was a warm and sunny day but they didn’t feel bad about being inside, they’d done their exercise and there were plenty more hours in the day.  The traffic was light and it only took them 20 minutes to drive.  Sarah was starting to feel tired, achy and lightheaded – she assumed it was the exercise and she would pick up after some lunch.

They ate lunch and then browsed the stores for an hour, picking up a few things on the way but Sarah was losing her enthusiasm.  The fluorescent lights were beginning to give her a headache and she was still feeling quite weak and wobbly.  They turned a corner and went into their favourite bath products store.  The strong scent of all the various products irritated Sarah’s nose and made her head ache even more.  After a minute or so she couldn’t stand it and had to get out of the store so she headed for the entrance, muttering something to Viv on her way past.

Out of the store she closed her eyes and took a few breaths.  She felt very odd, her head was pounding and spinning, her heart was racing and she felt weak.  Then she looked around and started to panic.
‘There you are’ said Viv walking up to her, ‘I’ve got a couple more things to do then I think it’s cupcake time, lets go!’  And she headed off.  Sarah looked around, the feeling of panic grew as she realised she had no idea where she was.  She knew she was at the shopping centre but she couldn’t place herself inside it.  Her normally spot-on sense of direction had completely failed and it terrified her.  She was confused and overwhelmed.
‘Viv!’ she managed to squawk.  ‘Where are we?  I don’t know where we are, I’m lost’
‘We’re at Greenvale shopping centre’ Viv replied concernedly, coming back and standing next to Sarah, she put her hand on her arm gently ‘are you ok?’
‘No! I mean, yeah I know we’re at Greenvale but I don’t know where abouts, my brain can’t get around it, I can’t figure it out.  Can you help me, please?’  She took her friends hand.
‘You’re saying that to the person who usually has the worst sense of direction ever but I never lose myself in here!’ Viv laughed ‘and yes, of course I can.  I still need to get a couple of things are you ok if we do that or do you need to go now?’
‘I’ll be fine’ Sarah replied ‘well, not quite fine but I’ll survive just don’t lose me or I’ll never get out of here and will probably end up in a ball on the floor bawling my eyes out!’

Viv quickly finished her shopping and drove Sarah home.  ‘Is there anything you need me to do?  Is Peter home?’ she asked as they pulled up in front of Sarah’s house.
‘I’ll be ok, I think I just need to have a rest, maybe I’m getting a migraine, my head feels like it might be.  Pete will be home later this afternoon.’  Sarah let herself in.  Viv followed to make sure she got in safely then gave her friend a hug and turned to leave.
‘Sure you’ll be ok?’
‘Yeah, I feel a bit silly but it was really strange.  That’s never happened to me before’ Sarah said wanly from the couch.
‘Well call me if you need me, anything, I’ll come over.’  Viv smiled and walked out the door closing it behind her.

Sarah spent the rest of the day lying down, her head was in agony and every time she tried to stand the room started to spin and she felt nauseated.  She wondered if she would get to work the next day but decided that her energy had been pretty good lately and she would be fine the next morning apart from the inevitable migraine hangover which didn’t normally stop her from being able to work.   Pete came home late in the afternoon and grumbled to see her on the couch but he was more sympathetic when she told him about her day.  He had spent the morning playing basketball with his friends and afterwards they went back to someone’s house for a barbeque and beers.  Sarah went to bed at 7 after a dinner of vegemite on toast, which Pete made as she couldn’t stand up long enough to cook for herself and couldn’t stomach the idea of anything more complicated.

She slept soundly through the night and woke at 5:30 to her alarm.  She felt like her brain was stuffed with cotton wool.  Her limbs were weak and shaky, her head still hurt and the room was still not staying where it was supposed to.  It was a struggle to get out of bed and through her morning routine but she pushed herself.  It was too late to call in sick for work she would get in trouble from the ward and she always felt bad having to do it.  She thought she could last until 2pm and then there were 2 rostered days off so she could rest.

It’s been a few days since I posted anything and I have been a bit slack with my writing but am catching up to the daily target 🙂

Hope you’re enjoying it!

50k for awareness

The 12-18 of September was invisible awareness week 2011, the week when we’re officially allowed to make a fuss about all the crap that has been happening with our bodies and help educate people about invisible illnesses and the impact they have.  So where was I after my last post about the burden of illness on society and the individual? um, I was reading a book.  Actually it was a trilogy and it was pretty darn good.  Ok, to be honest it was more than that – it was EPIC!

There’s two reasons why I don’t read much these days; one is that when you have difficulty concentrating it can be a little bit frustrating when you find you’ve read the same sentence 5 times and still don’t know what it said.  The other reason is because I quite enjoy sleep, in fact I really need it to keep my body going and a really good book gets in the way of that.  I don’t just read books, I devour them, I live them.  I would breathe fantasy if I could.  If someone said to me; ‘Claire, you can go to Narnia or any other fantasy place 20 times but each time you will loose either a finger or a toe’ it is more than likely that I would go at least 15 times – so long as my right hand is fine and I can write (and wield the necessary sword or whatever you need in any fantasy world) I’ll survive!

As a child I lived in books.  I often didn’t have much choice; asthma, chronic sinusitis and then depression took that choice from me.  But I didn’t mind so much, the fantasy world was so much more exciting than the real one.  I wanted so badly for it to be true that for a while I used to go into my wardrobe at night just incase it suddenly became magical and transported me to Narnia.  It never did.  But I survived, I read more and more and I loved it.  I was reading at a grade 6 level in grade 2, I guess that’s what happens when you don’t have much else to do!  Sadly in year 11 I came to the conclusion that if I wanted to pass my subjects I would have to stop reading and start studying.

More recently, movies have often replaced books due to chronic fatigue and dysautonomia getting in the way of my brain function but every now and then I still get hooked.  I deliberately aim for ‘light reading’ because those books are easier to put down but the odd ‘unputdownable’ book still gets through and I have always had a problem with series – once I start one I have to finish, I even persevered with Robert Jordan’s ‘Wheel of time’ series when many before me gave up in frustration and disgust at his appalling writing.  Just because your wife is a publisher doesn’t mean you should get away with that kind of writing, still, the story was great if you could get past that!  Anyway I digress; This time it was ‘the night angel’ trilogy by Brent Weeks.  I did pretty much nothing for just over a week other than read these books.  They have been added to my list of favourites alongside George R R Martin’s ‘Song of Ice and Fire’, Stephen Donaldson’s ‘Mordant’s Need’ and Cecelia Dart-Thornton’s ‘Bitterbynde chronicles’.  It has it all; magic, destiny, assassins, Gods, kings, monsters, passion, fear, ambition, loyalty, friendship, sorrow and a good measure of sword fighting and treachery.

So while I was reading my books others with dysautonomia were out there raising awareness doing radio interviews (here’s a good one by a POTSy friend of mine), writing blog posts and generally getting the word out.  But it’s ok, I can still contribute!  How (you may well ask)?  Well, as it happens November is Nanowrimo (aka National November Writing Month) where the challenge is set for anyone who believes they can to write a 50 000 word work of fiction between November 1 and November 30.  So a group of people with dysautonomia of varying types have decided that we have plenty to write about that is non-fiction and that invisible illness really needs more than a week to be talked about so when the idea for 50k for awareness was suggested we jumped at the chance.  What an adventure!  Boy are we going to be busy.  The big question is, how do you start a work like that?  Oh wait, I have it;

Once upon a time…

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