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 🙂

Raising awareness and bringing joy with a pair of sparkly, red shoes

As soon as I saw the ruby red, satin and sequin, kitten-heeled sandals in the store I knew I HAD to have them.  They were perfect for my year 12 formal and I had desperately wanted a pair of sparkly ruby shoes for as long as I could remember after seeing them over and over again on my favourite childhood movie; The Wizard of Oz.  That movie never failed to bring me toe-tapping, heel-clicking, fuzzy-warm-feeling joy and my desire to have my own pair of dorothy shoes never went away even as my movie collection expanded.  That movie is special to me in so many ways.  The song, ‘Somewhere Over the Rainbow’ was my favourite song growing up.  For years my grandmother would play it on the piano and I would sing.  Even when her fingers were too painfully arthritic to play anything else she would still play that song for me and now, whenever I hear it, it never fails to bring back those memories.  For a long time after she passed away I couldn’t listen to it and it still makes me cry, it was our special song and while I can never sing it with her again I still have the memories.

The Wizard of Oz (and that song in particular) made me believe as a child that there actually was another world over the rainbow full of magic, music and mystery.  That good will always triumph over evil, that tin men and scarecrows can come to life and sing and dance, that courage, love and intelligence are in all of us even if it doesn’t appear that way at first, and that there will never, ever be any place like home and all we have to do to get there is believe and click our heels together 3 times (that part still gives me goosebumps!).  That pair of shoes is the embodiment of all those messages.  They are love, joy, laughter and carefree innocence and I have a sneaking suspicion that this movie may be the origin of my shoe obsession – well really, everyone wants them and they’re just too darn cute!

So my pretty red shoes didn’t last forever – they were satin, somewhere along the way something got spilled on them and eventually the sequins started to fall off.  They also weren’t the most comfortable or practical shoes in the world but that was really beside the point.  The point is how they made me feel and that is where the joy and awareness part of this post comes in.  A fellow dysautonomia sufferer (and owner of a fabulous, home-made pair of dorothy shoes) had an insomnia-fuelled brainwave.  In her muddled, sleep-deprived state very early one morning she thought to herself, ‘what is missing from the lives of most dysautonomia sufferers?’ AND (even more impressively for 3am), found the answer to that question was; Joy!  And the obvious vessel is dorothy shoes.  She then took it a little bit further and thought about how dorothy shoes could be used to bring joy AND promote awareness of dysautonomia and came up with; The Dorothy Shoe Project.  Which is a stroke of genius really, for any time of the day!

So, what does the Dorothy Shoe Project involve? you ask.  Well, the idea is to post a few pairs of Dorothy shoes to Dysautonomia sufferers around the world – so far she has had expressions of interest from Australia, the UK, USA, Canada and New Zealand (I believe) and take photos wearing them.  Wearing them anywhere doing anything (well, you know what I mean, let’s keep it PG please people!) particularly anything silly that involves copious amounts of joy and laughter AND the person wearing them has to have dysautonomia of any type.  I am so excited about this project, it gives me another chance to wear sparkly red shoes and, lets face it, there can never be too many chances for that!

If you or anyone you know might be interested in participating in the Dorothy Shoe Project, raising awareness about the project or even sponsoring the project, check out ‘Living With Bob (Dysautonomia)‘.

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’.

The Butterfly Effect

Isn’t it funny how one decision, or a series of decisions that lead into each other can change everything. Often at the time it doesn’t seem like a big thing but it throws ripples that become waves that then turn into tidal waves that crash through your existence and the existence of others after which nothing is ever quite the same – like that movie from the 90’s; ‘The Butterfly Effect’.  Decisions like that can have consequences that range from exceptionally good to heartbreakingly tragic but the thing they have in common is that the consequences are monumental.  So far the Camino is looking like it could be one of those decisions.  At least I hope it is, but you often can’t tell right away only afterwards, once the ripples have run their course.  The last time one of those decisions came into my life and the lives of those around me was early January on a cruise.  Fortunately that was a good one too and has resulted in the romance of a lifetime for two very lucky people, sadly I was not one of them but oh well, we can’t have everything!  Actually, if you really want to be pedantic you could say it started much earlier than that, when we first decided to go on a cruise.

My decision to walk the Camino has not been a light one.  It was spontaneous, yes, but I am aware of the issues I could face, the things that could go wrong and I choose to try anyway.  Not to say that I haven’t been a little nervous about how my body will cope with it and to that end I posted a question on a Camino forum I have joined recently asking if anyone had been in a similar situation and tackled the Camino (apart from my original source of inspiration – The Year We Seized the Day); I received a surprising and very uplifting response.  The response was from a girl named ‘Thea’ who has MS (multiple sclerosis) and tackled the last 100km of the Camino last year with the aid of a 4 wheel frame.  Her story was further inspiration and I am more determined to do this now than ever (well, in the last week or so since deciding to do it!).  She wrote a bit of a blog about it and it makes for some rather inspiring reading.

It is now 7.5 weeks until I leave and I am equal parts excited and nervous.  I have only ever been to Europe on family holidays and have never travelled overseas by myself.  I always thought it would be more fun with someone else and I have had some great travelling companions to share amazing memories with.  That being said I also have some not-so-amazing memories, mainly involving travel with mum but hey, that’s what mum’s are for right?  For messing things around, getting lost, amusing language barrier stories, minor camper-van accident stories, billions of unnecessary photos, being late to things and finding them closed and generally being a nuisance or a complete dag (see picture below).  Along with the bad comes the good though; I’ve been to some amazing places with my mum and I wouldn’t trade her for another – camera obsession and tendency towards lateness or no!

I know when I look over all the things I have done there is a lot I have achieved, a lot I have seen and done and a lot of places I have been.  But that’s not the point here.  The point is I don’t feel like I have achieved anything of note, not me personally anyway.  Does that make sense?  You could be sitting there reading this going; what is she complaining about? She’s done all that, I know people who haven’t been out of the state before or never went to university or went and didn’t complete their studies!  I’m not apologising for the opportunities I have had or the work I have done and I’m certainly not making them seem like nothing at all. I’ve had to fight hard for the things I have done, particularly over the last 7 years.  What I’m saying is this; in terms of happiness, life satisfaction, expectations etc I haven’t really gotten anywhere close to where I would like to be, or far from where I was when I finished school and not through lack of trying or lack of desire to do so.  A lot of people my age have the energy and the wellness to achieve what they want to or to not achieve, if that is what they prefer. And that is why this trip, this challenge, this decision is so important to me.

Like most girls (and some boys) growing up I wished that one day someone would come and tell me that I was a princess, that my life would change and become a fairytale.  I had a very vivid imagination.  This dream wasn’t helped by the release of the Princess Diaries or the true fairytale of Mary and Frederik.  Sadly that day hasn’t come for me and I came to the realisation that it would not (ok maybe I’m still dreaming a bit – or just naively holding out hope) and we have to make our own fairytale, our own story – there’s not really anything wrong with dreaming, unless it takes over your life and makes you unhappy in comparison.  Look back over your life and think – if your life was a story, would you read it? would you be happy with it?  It doesn’t have to be extraordinary but it should make you happy.  It should make you proud.  There are moments that could make you sad but there should be more that make you smile.  Life satisfaction is a very important thing but it is also a very subjective thing.  What makes one person happy will not necessarily make another happy.

Achieving happiness can be as simple as changing your attitude – just deciding to be happy seems to work for many people.  For others it is far more complicated and depends a lot on where you are in life.  But one thing I have noticed is; changing something small can make a huge difference to your happiness.  Shifting your attitude or your perspective.  Deciding to do something different.  Taking up a challenge, taking time to smell the roses, smile at the violets or look at the stars.  Sure there will be hard times, it’s part of life, but there will be good too and if you can look at those good times you’ll often find that they were simple.  If that doesn’t work then looking at puppies and kittens can be very entertaining – for example:

Above Left: Dogs of destruction – that green and yellow fluffy stuff once belonged in the blue thing they are sitting on which was once their bed

Above Right: Life saver – well she was there and she didn’t move and looked pretty cute

Left: Yes, that is a small dog in a tree.  His name is Archie and he likes to dream big

This has been a bit of a long post today.  Ding would like to sign off by saying he is still impressed by the amount of room I have left him in my pack although he still hasn’t decided what the most comfortable spot to while I’m walking will be.  Now if you’ll excuse us, I think Ding and I are going to watch the Princess Diaries…

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