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)‘.

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…

Camino Day 8, part 2 – the end of the beginning

Camino day 8 – Part 2

And on I walked.  The numbers on the wayside markers went down and down and the view was still awe inspiring at times.  I passed fields of wildflowers and groves of silver birch, oak, pine and eucalyptus.  The way went through a tunnel of green that went on for maybe 100m.  Perhaps the trail was carved by hand out of the ground, or maybe the feet of thousands of pilgrim wore away at the earth over time and this is the result.  Who knows, but I like to think it is the latter.
 After that I passed some dead shoes on a waymarker, they had been someone’s faithful companions for hundreds of kilometres and had walked as many steps as they could.
 I really wanted to take a photo of the 13km marker (I can’t remember why) but at around 13.5km the markers stop saying how far there is to go just as you get to the freeway near Lavacolla.  I later discovered that this is because the way was changed to go around the airport – so my book was right all along, not 4km or so out as I had thought.  This meant that my already tough walk of 18.5km was going to be 22.5 (or whatever) but the thought didn’t really hit home, I was on a roll and wouldn’t be stopping.

My feet and legs ached and I cried intermittently, overcome by the magnitude of what I was achieving and the significance of the day.  And the finally, there was Santiago in the distance with only Monte de Gozo in the way.  Not a particularly inspiring first impression but it was the end of the road and that was enough.

The end went on forever, twisting and turning.  First Santiago was to the left, then in front, then to the right, then to the front, then – ah you get the idea.  Finally I got to the bottom of Monte de Gozo and the end was in sight – well, the freeway sign marking the start of Santiago was in sight.  Now all I had to do was get to the cathedral.

At the other end of the freeway overpass I met up with a couple of girls I had met at Arzua (one hot American mama and one sexy Spanish senorita) walking with a (gorgeous german) girl I had met earlier in the day.  I joined them and we walked (or rather hobbled) through the streets of Santiago following the Camino as it twisted and turned on its way to the cathedral.  It seemed to take forever and we were all sore and going slowly – there was no need to hurry, we were in Santiago, we would make it to the end.

And then, finally, we were there!

The cathedral was huge with a magnificent carved stone facade towering above the plaza where the tents of the protesters were set up on the stone ground.  Inside we were surrounded by stone pillars and tourists, some were pilgrims, some not.  We dumped our packs in an alcove and sat, absorbing the atmosphere and reflecting on our journey’s and what had brought us to the Camino.  Hiking boots were swapped for comfortable sandals and we sat in companionable silence for quite a while.  We decided to go and rest in our respective hotels and meet up again for dinner, we thought the chances of finding the band were very slim as there were many plazas in Santiago and we had no idea what time to look.  So we collected our things and walked outside to find – the band!

We greeted them for the last time and listened for a while – there were plenty of hugs and photos.  My walking companion and her injured friend showed up after a little while – apparently the delightful Italian and Southern American lad had finished today as well and had only just passed through the plaza while we were in the Cathedral.  After saying goodbye for the final time the girls and I headed off to get our compostela’s – well, to join the incredibly long line to get out compostela’s and then off to our hotels for some much needed rest before meeting up for tapas later on.

It is easy to spot fellow pilgrims in the streets even without poles, packs and boots.  They usually have sandals with socks, not overly fashionable but practical clothes and often walking slowly and stiffly/sorely with a shuffle or hobble.  Many stop to say congratulations or share a smile as we pass like we know a secret that the other people in the street don’t know.

Today I made a decision.  If/when I am accepted to study medicine, when I finish I will walk the Camino again but this time it will be the whole thing from St Jean, all 800km of it.  The Camino takes a lot, every day you have to give it everything you have and in return it can give you exactly what you need (if not necessarily what you want).  So this time I have walked in hope, next time I walk with thanks.
Just to prove I was really there!

And I will go on to Finisterre, because for me that is the end of the journey.  I wont do it on foot, when I got to my hotel after leaving the cathedral I discovered a blister the size of Mars on my toe that means I will lose my toenail now, not to mention all the rest of the pain my poor body is producing!  Yes, it’s a bus for me – Onwards to the end of the world!!

Camino de Santiago days 1-4; Sweat, blisters and red wine

Hola!
It seems ages since I last wrote and a LOT has happened.  Wow, what a lot to update!  I have walked from Sarria to Melide, around 60km and my feet can definitely feel it!  I have another 50 to go till Santiago de Compostela and while I might not be moving as fast as many of the other peregrinos I am still moving. 

So far I have learned a lot about peregrinos, blisters, hiking, communication and my body.  Here are some of the things I have learned:

Pilgrim life:  The life of the modern day peregrino seems to consist mainly of sweat, blisters and redwine – and none of them in moderation.  The majority of Peregrinos are European, with Spanish, Italian and French making up the most of that group and Germans, Danish, Dutch, Belgian in that mix as well.  Apparently there are a few Australians around but I have yet to meet any.  I have also encountered Canadians, English, Scottish, Irish and Americans.  There is no typical Peregrino.  The pilgrim´s dinner at a private hostel or bar nearby is the best place to meet people. 

Pilgrim food:  The pilgrims menu is found at most bars along the camino and consists of 3 courses including desert and wine or water (most choose wine) for 9 euro.  The servings are huge and most options are very tasty.  Dinner usually starts at 6:30-7:30 depending on where you are.  Breakfast usually consists on tea or coffee and toast for 3 euro. Lunch can be harder to find as siesta is at the most inconvenient time (from 2pm-5pm) and often consists of bocadillo (like a small baguette) with different kinds of stuffing.  They eat a lot of bread here!

The way:  There are 2 ways to do the camino – on foot or on bike.  Most peregrinos greet people along the way by calling out ´hola!´or wishing the person a ´buen camino´.  That is fine if you are on foot.  They cyclists tend to yell ´buen camino´ as they zoom past and cheerfully knock you into a ditch on the side of the way.  Hiking poles or walking sticks are quitepopular and I am very glad I brought mine, they help take the pressure off the knees and double as rythm sticks and/or dancing accessories if you are so inclined.  Blisters are taken very seriously and everyone has an opinion. 

Meeting people and making friends:  So far I have met 2 very english retirees, on separate days.  One was the typical english fuddy duddy who smoked a pipe, couldn´t figure out how to send an email to his daughter and complained bitterly when the germans got guiness and he didn´t.  The other was slightly more technologically inclined but also rather english.  I met a couple of Americans and a Dutch girl the other day, we had a great night at the bar drinking vino, teaching the bar tender English and generally being ridiculous – they were walking 45km per day! crazy!  The next morning I walked a while with the Dutch girl who was lovely but I was a little slow moving for her and she headed off after a while.  It is very easy to meet people, sometimes they just join you walking.  Some make it a little difficult, for the first two nights there was a woman staying at the sameplace as me and she was having a snooze at 3pm both times I arrived – it is impossible to unpack your pack and find things quietly!  She alsoleft at 5am.  it made me wonder why on earth she was leaving so early if she was only going relatively short distances like me.  Another serial encounter was ´zie Germans´, a family group of 5 previously mentioned in connection with Guiness I encountered them a few times the first day then they stayed at the same place as me the first night.  Then I saw them a few times again the next day but lost them when I ended up at the hostel.  A few hours later I walked into the bar for dinner and there they were!  The last I saw them was yesterday afternoon, I think they must have gone a little further than me that day so I think I´ve lost them, it´s sad, they were very nice and it was entertaining how they kept popping up everywhere!

Language barriers:  A few of the Peregrinos speak English reasonably well and love to learn more.  For those who don´t it is easy to get on with a few words, had gestures and a smile as everyone is happy to chat and I have not encountered any grumpy people along the way.  I also seem to get by ok making myself understood by shop and bar staff – I have a few words of Spanish but not many and my ear is getting tuned more to it.  I find it is easier to understand than speak and I keep trying to speak French!

Pain and resilience:  I think that if I had not been unwell for so long and forced to struggle and be strong I would be having a harder time of it.  That being said, if I hadn´t been unwell I would be fitter, my feet would be more used to walking and standing (nursing is good for that!) and my muscles would be stronger.  So far my energy levels have been the least of my worries so they have kindly stayed ok so I can focus on the more loudly complaining parts.  My feet are killing me; each day I find new blisters, my shin muscles hurt from picking up my feet, my knees hurt as per usual, my quads hurt, my hips are tight and sore and my lower back muscles hurt from compensating for my hips and carrying the pack.  So it looks like a lot of the same muscles and tendons are used for hiking as with roller derby!  but it´s ok, I keep going, I go as far as I can by 2pm and see how I feel then or by the timeI decide I can´t do more.  So far I have had 3 days of just over 15km and one of over 10.  Distance is hard to measure here, there are carved stone wayside markers that are the most accurate but I forget what they say when I stop!  My guidebook is useless and around 5km out. 

Santiago will always be there:  No matter how fast or slow you go Santiago will alywas be there at the end waiting for you, it´s been there for hundreds of years and will be there for hundreds more.  It doesn´t matter if it takes me longer, it´s not a race so as long as I get there it is all good!  Sometimes it is tough to keep my feet moving but then I put in the headphones and walk to the beat – it works wonders

One more thing I have learned is that baths are fantastic!  I checked into a hoteltoday when I heard they had internet, a bar/restaurant and baths in the rooms.  So my feet thoroughly appreciated the soak even if myknees ended up around my chin as the bath was only a half size!

Tomorrow I am off again, maybe I will get to the next main town, maybe I will find a smaller one somewhere, who knows, it´s an adventure!

Next time I find internet I hope to post about this area of Spain (Galicia), the people who live in it and the scenery!  But for now, Hasta Luego!

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