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’.

I have confidence in me!

Over the past few days I have had several conversations with a close friend on the issue of confidence – or more specifically a lack thereof and how to improve it.  That got me thinking; there are a lot of people out there similarly afflicted who have no idea how to go about boosting their confidence.  So I thought I would write about it and my journey from the quiet, shy, self-loathing child I was to the (reasonably) confident and happy person I am today.  That being said I still have my moments of self-doubt and fear but I am better able to manage or ignore them and get on with my life!  One of the best songs ever written about confidence would have to be ‘I have confidence’ by Rodgers and Hammerstein in The Sound of Music particularly when performed by Julie Andrews (hence the title of this post).

In the beginning of a journey to confidence courage and confidence are paired, after that stage courage is more linked to happiness – happiness with your life, where you are in it and who you are as a person.  Courage is so much more than becoming a superhero – risking your life for others, doing something dangerous.  Courage is different for everyone.  It takes courage to try something new whether that is sky diving or changing your hair colour.  It takes courage to stand up for what you believe in whether that means being arrested fighting your cause or telling someone you care about that they are smothering you (in some ways this takes more courage). There is a lot out there about courage ranging from Eleanor Roosevelt’s famous quote; ‘Courage is not the absence of fear but rather the judgement that something is more important than fear’ to the song ‘I whistle a happy tune’ from the Rodgers and Hammerstein production of The King and I.  Then there is always Strictly Ballroom’s ‘A life lived in fear is a life half lived’.

Thinking through what I’ve learned over the years showed a number of steps and I have tried to write them down as succinctly as possible.  Here are the first 5 with 5 more to follow in a future post – all together would make a mammoth post and it is also a lot to take in at once!

1.  Know you’re awesome.  Make a list titled ‘why I’m awesome’ and fill it with all the things you like about yourself, all the things that make you an individual, all the things that make you awesome.  It can be anything from ‘I have green eyes’ to ‘I told Paul Smith to piss off in primary school when he was being mean to me’ to ‘I got an A on my English work in year 5’ or ‘I have perfect teeth’, ‘I mastered turn-around toe stops in one day’, ‘I speak more than one language’, ‘I travelled overseas’, ‘I am a safe driver’, ‘I have amazing friends who love me for who I am’ and ‘I cook a mean lasagne’.  It doesn’t matter what is on that list as long as it’s something you feel good about.  If you need help ask your friends and family, I’m sure they’ll be happy to oblige.  Here’s some inspiring music

2.  Act confident.  I know it sounds cheesy (don’t we all love a good dose of cheese?) but if you act more confident than you feel on the inside people will begin to think you are confident and will treat you accordingly.  After a while you will begin to believe it too.  This works in the short term but after a while you will need something more solid to work with which is where the rest of the points come in!

3.  Be comfortable in your skin.  If you are happy with the way you look you are more likely to feel confident about yourself.  No, really!  Remember that time you wore that outfit that you weren’t sure about that someone talked you into wearing and you spent the whole event feeling self-conscious and hiding near the wall watching that person in the amazing outfit that oozed confidence and looked like they were having the time of their life?  Yeah, see?!  It is highly unlikely that everyone will ever be completely happy with every part of his or her appearance so work with what you are happy with.  You may have a gorgeous smile, lovely legs, nice arms, beautiful hair, pretty dainty feet that can fit any shoe, a graceful neck that flatters any jewellery, fabulous taste in clothes, a left elbow that people come from miles around to see or a right shoulder blade that is the talk of the town.  Whatever it is it is yours so be proud of it.  If you feel you need a bit of help there are wonderful books out there on how to dress to flatter your figure – try Trinny and Susanna’s what you wear can change your life or similar books.  If you’re concerned about not being able to do makeup properly to enhance the right features book a makeover with a respected salon or makeup company.  Or if you really want a complete overhaul there are always image consultants and image development courses that can teach you all that and more.  Everyone is different so find what works for you.  When you’re happy with how you look on the outside you’ll feel more confident on the inside and always remember the words of Lady Gaga – ‘I’m beautiful in my way ‘cause god makes no mistakes, I’m on the right track baby I was born this way’.  Whether you believe in God or not or enjoy her music or not is beside the point really, the words are good!

4.  Stop second-guessing yourself.  Make a decision and stick to it, don’t agonise over it for days afterwards and beat yourself up for making the wrong choice.  Once you’ve made it that’s it, there’s no going back.  Not to say you can’t consider it properly but set aside a certain amount of time to do it, think clearly; weigh up the pros and cons and how your choice makes you feel.  If you feel you have made the wrong decision, make a different one next time but stop stressing about it now!  The saying ‘don’t sweat the small stuff’ if very appropriate but I prefer ‘don’t stress about the things you can’t change and focus on what you can’.

5.  Look out for number one.  Ok so it might seem a little selfish to some people but you are important.  One of the most important things I learned from my Camino is that nobody can walk it for you, just like nobody can live your life for you so you have to be in a position to do that – you have to be well enough and happy enough.  If that means just dropping by a gathering instead of staying for hours because you feel you should when you’re exhausted and stressed then so be it.  If it means picking up a cake from a bakery instead of making it yourself cause you ran out of time then so be it. If you’re stressed, run down, unhappy and exhausted by your life then make some changes – you can’t be happy that way and happiness affects confidence.

I hope this has been helpful to anyone seeking some hints on boosting their confidence.  It’s not an overnight change and takes some work but at least this is a start!  The 5 remaining steps will follow shortly 🙂

November is over!

It’s the first of December, that means November is officially over and the Christmas month has started!  That also means that NaNoWriMo is also over and while I didn’t reach the targeted 50,000 words I am very happy with what I did achieve in what has turned out to be one of the busiest months of the year for me!  Here’s a brief synopsis and I hope you’re as excited as me over what I’ve been able to do this month after months of being virtually house-bound.

  • Wrote around 30% of the target for NaNoWriMo (while not 50,000 words it’s still quite a few!)
  • Had 5 market stalls
  • Made over 50 hair clips
  • Made over 30 headbands
  • Had 6 physio appointments
  • One specialist appointment
  • 2 Mickel therapy appointments
  • Dinner with friends 4 times
  • Lunch with friends 3 times
  • 2 St John’s divisional meetings
  • 3 St John’s shifts (2 on one day finishing at 12am)
  • Saw KD Lang in concert (as a St John’s volunteer)
  • Got my hair cut
  • Picked up my little bro from the airport after his 5 month overseas adventure
  • Saw my personal trainer 4 times
  • Went to a Christmas party
  • Saw part of an international roller derby bout (while I was having a market stall)
  • Celebrated with friends at an engagement party
  • Got a tattoo to commemorate my Camino

So yes, I may not have reached the goal of 50,000 words but I decided that it really didn’t matter as I could do so many more exciting things during the month and when you have been out of action for so long that is really the main thing!  Right now I couldn’t be happier though I still have my wobbly days and occasional random tachycardia.  It turns out that my HR was the lowest I’ve measured it at in ages yesterday during the tattoo process – go figure!  Whether it’s the Mickel therapy, the change in doses for Midodrine and Fludrocortisone, being relaxed and happy or a combination of all of the above that is helping the healing along (who really knows!), the important thing is that it’s happening and I’m well and truly on the road to recovery – with the occasional few steps backwards of course.

Here’s a picture of my tattoo – the photo isn’t great and colour isn’t quite right yet but of course I have to wait until it settles down a bit and finishes peeling and healing before we can really tell what it’s going to look like.  Who knows, one day I may get a yellow arrow to go with it but for now I am very happy with my scallop shell and the tattooist was fantastic.  He worked with me for over an hour trying to get the design right before we started and proved to be a great guy and entertaining conversational companion throughout.  For anyone looking to get a tattoo and can travel to Port Melbourne or Chapel St I highly recommend Victims of Ink.

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