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 🙂


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.

Just keep swimming

I haven’t written for a few weeks as I have been off in Bali with my family so I thought I’d get back into the swing of things today by talking about my chest.  Ok don’t get too excited, while I have it on good authority that my chest is certainly worth noticing it is not in fact my frontal anatomy that I wish to discuss, more what’s behind it; my heart 😉

As the anatomy lesson goes; the heart is connected to a mass of blood vessels both big and small that carry blood around your body – blood is important.  If we don’t have enough blood we can die.  Blood carries all sorts of important things from one place to another like oxygen, antibodies, hormones, chemicals, white blood cells and platelets etc.  When everything is working normally the heart should beat at somewhere between 60-100 beats per minute at rest and blood pressure should be between 100-140/60-90.  The two values for blood pressure are taken by measuring the pressure that blood exerts on the main arteries when it is being pushed through by the heart (when the heart contracts) and the pressure when the heart relaxes.  All this stuff is regulated by the autonomic nervous system and central nervous system and can be affected by stress placed on the body by infection, exercise, emotion, pain, fever, anxiety, drugs, fluid and electrolyte balance and oxygen and carbon dioxide levels.  Here’s an interesting link so you can check out your blood pressure and see where it sits on the chart.

Thanks for the anatomy lesson Claire, it’s great to learn something new every day but why is this relevant, you ask!  Well it is relevant because it helps me explain a few things.  My two main medical issues at the moment are my low blood pressure (which drops when I stand up) and my over-excitable heart rate (which tries to compensate for the drop in blood pressure but gets carried away and doesn’t realise it is at the same time being completely useless in the helping stakes and actually making it worse).  I don’t qualify for the POTS (postural orthostatic tachycardia syndrome) diagnosis on account of the drops in blood pressure so I’m not cool like the yellow wiggle, but I also don’t fit into the ‘typical’ presentation of recurrent vasovagal syncope because of my tachycardia – the usual vasovagal response is a drop in blood pressure and heart rate.  So I am special, an honorary ‘POTSy’ and an unusual NCS’er – well, we wouldn’t want to be normal now would we 😉

Some people don’t quite realise how much these conditions can affect you and to be honest even though I have been feeling pretty crappy on and off for the past 7 years and it has had a major impact on my life I never really thought of it as being particularly dangerous until a few weeks ago.  Sure there have been times when I maybe shouldn’t have been driving or shouldn’t have gone out but I have been pretty careful with it in that respect.  Allow me to illustrate;

In June 20 metres up a particularly steep hill just outside Sarria in Spain and 15 minutes into my 115km Camino de Santiago I had to stop because I felt dreadful.  I couldn’t catch my breath, my heart was beating out of my chest, I felt dizzy and nauseated and was quite concerned I would not be able to go any further.  Sure I was de-conditioned and occasionally had asthma but this was ridiculous.  I checked my heart rate and it was 187bpm.  This is not good.  I know that my heart rate jumps from somewhere between 78-98 to 120 just on standing to compensate for the drop in blood pressure but I had never realised just how far it could go and how awful it could make me feel.  It’s possible it had been doing it all along and I never realised why I was so tired, out of breath and dizzy with exercise on some days but not others – I always assumed it was due to my blood pressure.

This experience wasn’t so concerning, I made it up the hill eventually and didn’t have another experience quite like it for the rest of the hike.  The worst one happened a couple of weeks ago.  I went scuba diving in Bali with my family.  Ah yes I can hear it now, how incredibly stupid was that?! Why would you put yourself at risk so much? and blah blah blah.  Well, I’d done it before and I will do it again and the problem was a rather singular one.  We had dived the previous day and apart from my usual adjustment period (where I have to remind myself that I can in fact breathe under water with the regulator and the huge tank of oxygen on my back) it was fine, fantastic even.  We were swimming around a huge garden of soft coral with spectacular fish and the hope of seeing a sunfish (no such luck I’m afraid) – it was glorious and felt wonderful to be back under the water again where I have always suspected I actually belong.  Despite some sea sickness on the way back I was fine, a little tired but hey, I did it and here’s a photo to prove it – there is me ascending and there is my hair in my face…

Then we decided to go again the next day, this time to a different place that, due to the boat of snorkelling relatives and the massive tide/full moon scenario we hadn’t been able to visit the first time.  The Dive Master insisted the current would be better there, it would be more sheltered and the time we had picked (early in the morning before our boat to the main land) would be perfect.

We got off to a good start, a huge Titan Triggerfish was mucking around nearby minding his own business (thankfully), and there were schools of brightly coloured damsel fish crowding around the coral plates.  This dive would be 20m, my deepest dive.  We went down and I discovered I didn’t have enough weight, it had been difficult to stay down properly the day before but the conditions were fine so it wasn’t a huge problem.  This time the current was rather strong and I had to fight more to stay down.  It was a drift dive (we didn’t have to swim, the current would carry us along) but the current was so strong we hardly had time to really look around and you had to be alert to stop yourself from colliding with the coral.  I was ahead and didn’t know which way we were going so I slowed myself down to wait, then I was behind and had to catch up.  That was what did it.  Fighting to stay at the right level, then to catch up and keep on the right track in the strong current I started getting out of breath.  My lungs felt wrong because of the pressure and compressed air – I could feel my breathing and it was too much and not enough at the same time.  I needed more air, I needed to calm down and regulate my heart rate.  When I get tachycardia from exercise, no matter where I am I can rest and relax, regulate my heart rate, take deep breaths etc but this time it was not possible.  There was no stopping, no closing my eyes, no relaxing.  If I did that I could lose the group.  Normally that would be ok, I would search for a couple of minutes and then slowly surface as is the usual plan for that kind of thing.  This time it was different, I could search for them and end up a long way away and not be able to signal the boat to pick me up.  That’s when I started to panic a bit.  I caught up and signalled to the Dive Master that I had to surface.  I think this is possibly the first time I have ever given in to fear and as soon as I did it got worse.

I had to get up, to have a huge lung-full of real air and a break for a minute then I would be fine but I HAD TO GET UP.  Scuba law tells us that you ascend slowly, breathing regularly and not too deeply.  Well I kinda didn’t and that’s bad.  I’m very lucky I didn’t do any damage, it wasn’t excessively fast but it was certainly faster than it should have been.  My poor cousin on her resort (not qualified) dive was dragged along with us as we surfaced.  After a minute I felt ok and was ready to go back down again.  That was a HUGE mistake.

Not enough weight, remember!  I couldn’t get down, the Dive Master and my Triathlete cousin were powering ahead against the current and i couldn’t get anywhere, in fact I felt like I was going backwards.  Apparently if I had looked down I would have seen the other 3 divers below me but I didn’t.  Once again I was working hard, breathing hard and my heart was racing from the effort.  I was tired and had had enough.  I couldn’t catch them so once again I started to panic.  That was it, I was done for the day.

Looking back I know that if I had known the current was going to be so strong I wouldn’t have gone.  Even the Dive Master confessed that it was bad that day but that’s beside the point.  I can’t compare myself and my efforts to those of normal healthy people and triathletes 😉
For an open water diver with 5 dives in total under her weight belt the dive was too complicated.  I didn’t have the skills, my equipment was insufficient (I wish I could remember how much weight I had on my belt when I did the course!) and my fitness and health were lacking.  Dysautonomia has never really scared me before, apart from the whole ‘oh my god it’s going to be there forever and I’ll never get better and blah blah blah’ but that’s a different kind of fear.   It took me about 10 minutes of sitting in the boat feeling sorry for myself to remember that and remember what I learned on the Camino; stress about the stuff you CAN change.  Don’t beat yourself up about the things you can’t do – you’re not superhuman, you can’t do everything no matter how much you would like to.  Don’t compare what you can and can’t do to what others can because that just gets depressing.  You’re in Bali, I mean come on, Bali, yeah!!  And finally, Santiago will always be there (so will scuba diving, I can always do it again) I get there when I get there.

I’ll be back in the water as soon as possible and hey, when you can see stuff like this I really don’t understand why anyone wouldn’t want to!

The day after

The day after the Camino

This morning I am rather hung over – whoever thought tequila shots were a good idea last night was crazy.  Tequila is never a good idea (particularly when it follows a lot of wine).  So after I got to my hotel, had a rest and a bath (yay full sized bath!), unpacked my pack, did some washing (and freaked out at the way my middle toe had doubled in size from a blister that would mean my toenail would eventually come off) I headed out to meet up with the girls for celebratory wine and tapas at a bar nearby.  When I was almost at the bar I rounded a corner and who should I see having Tapas at another bar? Zie Germans!  They had arrived in Santiago the previous day so it turns out they weren’t that far ahead of me after all, if I hadn’t stopped for a rest day we would have arrived on the same day but then I wouldn’t have met so many amazing people.

I met the girls at the tapas bar – they had managed a trip to Zara and a cosmetics store so looked gorgeous, I was in my spare clean hiking clothes accompanied by my hot pink teeva sandals and socks – yep, Camino fashion at its best!  We struck up a conversation with a bunch of students at the next table – well, when I say we I mean they chatted and my friends translated for me while I made up my own translation as we went.  It got more amusing after a glass of wine or two, particularly as their names were Nacho, Igo and Piker.  Then we joined them for some bar-hopping and us girls were treated to a few Galician delicacies including pigs ear, mussels and a strange cheesy, soapy and vaguely corn flavoured white wine.  Somewhere along the way we met the Santiago pilgrim – a guy who makes his living (or rather drinking) by dressing up as a pilgrim and wandering the streets of Santiago

 After stopping at most of the bars along the street (every door has a bar behind it) and trying a glass of wine or so at each we finally ended up at the bar that all the other pilgrims seemed to have found.  Then someone insisted on Tequila.  It was a blast, I saw quite a few other pilgrims I had crossed paths with along the way including supercaminoman and the general vibe in the bar was one of celebration and relief.

Later on a group of English and Russian tourists arrived and I was able to have a whole conversation in English for the first time that night only to realise that my brain could no longer speak proper English and was firmly stuck in basic easy-to-understand English which was accompanied by excessive hand gestures and not helped by the amount I had had to drink or how tired I was.

It’s funny how the Camino makes everything come together; how you see the same people at different times.  It is like an isolated pocket of destiny.  Life and just being are so much more intense than at home.  People are different, places are different, all experiences are somehow more acute and emotions are more powerful.  One thing, however, remains exactly the same – hangovers…

The music of life

Music is a huge part of my life so before I set out for Spain and the great unknown I made a playlist of songs I thought would help me along the road to Santiago.  My Camino  playlist is now complete (with a little help from my friends) and covers everything from Metal to Disney (kinda like my normal music collection), it started off as 10 songs but then went on to 15 and finally finished at 20.  I have only doubled up on one artist though several artists featured frequently in my playlist, with all the rest I have just included the most applicable song – enjoy

  1.  I’m on my way (well I had to didn’t I!) by The Proclaimers; Completely essential in my opinion and I set out from Sarria on my very first day with it coming through my headphones – because I was!
  2. I’m Gonna Be (500 miles) – also by The Proclaimers;  also completely essential for any longer distance walking or even a visit to the pub/tapas bar a little later on when (I imagine) the drunker Australians and Brits arrive and loudly join in with the chorus (and then mumble their way through the versus) – well they do at home so I’m assuming the Camino is no different.
  3. Catch my disease – Ben Lee; I started many days with this song because the beat is good for walking, it is also cheeky, cute and uplifting.  Ben Lee is also a comedian so it can be hard to imagine someone from that area singing but he actually does a pretty decent job of it – the song is a few years old and I have no idea if he’s done much recently and no, I don’t think the song is actually about communicable diseases…
  4. China – Sparkadia; I love this song it is beautiful so it was really quite fitting that it accompanied one of the most significant moments of my Camino.  I first heard of this band when they played on Adam Hills’s program ‘Live in Gordon St Tonight’ and was completely blown away by the song.  Since then it has been one of my favourites.  I haven’t added the video because it’s on my last post.
  5. I want to break free – Queen; Pretty self-explanatory really!  I think most people walk the Camino to get away from the demands of their daily life amongst whatever other reasons they may have and traveling to Spain to walk 800km or however far you chose is a pretty good way to achieve that!
  6. Down with the Sickness – Disturbed; Perfect for when you need just need to put your head down, shut your brain off and bully your feet into getting up that tough hill – or shut out the incessant prattling of a tour group.
  7. The Cave – Mumford and sons;  I saw Mumford and Sons in Hyde Park (London) after leaving Spain and it was amazing,  I’ve never been to an outdoor concert with quite so many people in one place – it was similar to the Australian ‘Big Day Out’ but for only one stage.  I really liked the band before the concert but now I love them even more.  I hadn’t heard of them before their song ‘Little Lion Man’ came number one in the Tripe J hottest 100 in 2010 – I then found that my brother loved them so listened to his collection of their music (he is often my source of ‘new’ music as I tend to listen to my own playlists or Triple M which plays Rock music and not often new Rock music).
  8. The river of dreams – Billy Joel;  The man, the legend!  I was so sad when i missed him in concert when he was last in Australia and I will be lining up overnight if necessary to see him if he comes back.
  9. The Greatest love of all – Whitney Houston; Well you have to really don’t you because if you don’t find love inside yourself along the way you’re going to be pretty sore and miserable by the end (not that you wont be sore anyway but if you can’t find love in yourself you’re not really going to listen to or appreciate your body as much as you could be).
  10. Burn your name – Powderfinger;  There will always be a place in my heart for this legendary Australian band and for this song in particular.  I absolutely love it and it’s great to help you forget your aching feet and how many kilometres you have to go and just let yourself go with the music.  I saw their final farewell tour last year in Melbourne and will never forget it.
  11. If I ever leave this world alive – Flogging Molly;  Irish music has a great beat and uplifting sound that is just as appropriate for hiking as jumping around a pub with a pint in your hand and this song is no exception but the version on the ‘PS I love you’ soundtrack is a bit better than this youtube clip
  12. Blame it on the boogie – The Jacksons; This is a great song to bring out the hiking pole accompaniment for.  As I danced my way through the outskirts of Melide I did feel a little concerned that anyone trying to pass me would end up with a stick in the face as I acted out my customary dance moves for ‘sunshine’, ‘moonlight’, ‘good times’ and ‘boogie’ but fortunately nobody was trying to at the time.  There are some songs that are timeless and I believe this is one that can get any generation on the dance floor (or tapping out the rhythm on The Way)
  13. F**k you – Cee Lo Green; most appropriate for a tough stretch when you just need to stick it to the man (or hill, or whatever) and keep moving so you can get where you need to be.  On a more personal note, I am a huge fan of all the Cee Lo songs I have heard, I think he has a fantastic voice and gift for music that is (i believe) rare in the modern top 40 where a lot of it is electronically altered to within an inch of its life or just plain crap.  It seems to be rare to have a male African American artist who can not only sing well but isn’t trying anything along the lines of rap (which I don’t tend to understand) and whatever Usher, Akon and Chris Brown call what they’re doing.
  14. Born this way – Lady Gaga;  Ok, I confess, I do actually quite like a lot of lady Gaga’s music – no, that doesn’t mean I’m going to don 10 inch platform shoes and put cans in my hair or whatever and join the screeching masses at one of her concerts (although it would be interesting).  I do think that a lot of her songs have musical merit, they are simple and catchy and a few of them even have moral messages – not that some over protective mothers would believe their children should be listening to someone who wears dresses made of meat or occasionally very little coupled with big hair and bigger shoes but hey, a song that says I’m beautiful in my way ’cause God makes no mistakes (etc) even if you don’t believe in God (which I don’t) has got to be a good thing for the self esteem of impressionable young people and it is certainly uplifting to hear your mp3 player telling you were completely awesome and perfect when you were born and still are when you’re already congratulating yourself for being on the home stretch of a 115km hike.
  15. Don’t Rain On My Parade – Barbara Streisand;  A song from a famous musical sung by Barbara, yes I know that’s what she does and she does it well but this one is special.  It’s completely relevant to the playlist – it’s all about independence and determination.  Don’t tell me not to do something because I have to, I am the one taking risks not you and I am the one deciding that these risks are worth taking so don’t try and talk me out of it and don’t put my decision down – so there!  This had been a rather recurring scenario during the planning phase of my trip – and then of course there was the real rain…
  16. Higher than hope – Daryl Braithwaite; Another amazing Australian talent and even though his time was 10 years ago his songs still echo in the hearts of the generations who were lucky enough to hear them
  17. What a wonderful world (and I think to myself); Well I don’t think it’s possible to walk any of the Camino without coming to the conclusion that the world we live in is a very special and wonderful place and that there are some amazing people in it.  So if you need an excuse to gain some perspective, get away a bit, reaffirm the love within yourself and with the world around you, look no further than the Camino de Santiago – it will change your world
  18. The Bare necessities – The Jungle Book; Courtesy of Mars – because all you need on the Camino are the bare necessities.  You carry your life on your back and anything superfluous quickly gets left behind.
  19. Dock of the bay – I know there are probably more appropriate songs to sing at a place of such spiritual and historic significance like Finisterre but this was what came to my mind – whistling and all.  Though it is hard to whistle when you’re freezing cold and the weather is rather windy even if you are viewing one of the most spectacular sunsets of your life (made even more so by its significance.
  20. It’s the end of the world as we know it (and I feel fine) – REM; If you journey on to Finisterre from Santiago you really are at the end of the world – well, where the ancient Roman’s believed the end of the world was so the song naturally occurred to our minds and of course then we had to sing it (well the chorus at any rate – does anyone actually know all the lyrics to this song?!)…

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