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 🙂

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Life is a gravitron

It can be hard sometimes to keep moving when your life feels like being stuck inside a gravitron at a fun park. You know; always moving in circles really fast, beyond your control and making it hard to move forwards (or backwards for that matter or even sideways but occasionally upside down can happen) – then someone vomits and it flies back and hits them in the face. Ok maybe apart from the last bit but you get what I mean.

It’s been an interesting few weeks and I’ve been thinking about the Camino a lot. It has now been 4 months since I started walking (give or take a few days) and I have come full circle – back to where I was before I decided to go, in a place that I don’t care to visit often. But it’s ok; I think I’m out the other side of that now. It was tough for a while but something changed that. I had no hope, I couldn’t see a future I could enjoy and I was falling down the spiral again to a place in my mind that I haven’t been for a while.

Then I had my first session of Mickel therapy and it changed. Mickel therapy is a new treatment for Chronic Fatigue Syndrome, ME and Fibromyalgia. It works on the theory that these three conditions are caused by a dysfunction of the Hypothalamus gland in the brain that is responsible for all sorts of things including sleep, fatigue levels and the autonomic nervous system. I noticed a change after my first session, not a huge one but I do have more energy, a bit less brain fog and my heart rate which for months has been a little unpredictable and ridiculous is now between 75-80bpm at rest and hopefully wont jump so high when I do outrageously energetic things like standing and walking short distances.

In other news I have been occupying my pathetic time by making fascinators to add to my collection of other stuff I’ve made over the years to keep me from going insane while I couldn’t work and plan to sell soon. I will hopefully be having a stall at the South Melbourne Market’s ‘Style By Night’ series of night markets starting October 20th – unfortunately a few days late for Caulfield cup but in plenty of time for Melbourne Cup, Derby day, Oaks day, Stakes day and Cox plate! Here’s an example of what I’ve been making and to see more check out my accessories page on facebook.

That’s me in the spotlight losing my Religion

I haven’t written anything since Thursday because I was waiting for results and good news.  My blood test results seem to have been lost somewhere between hospitals so I don’t know if I can have the IgG infusion before I go away to prevent me from getting sick while I’m there and I don’t know what score I got on the GAMSAT so still don’t know if I can get into medicine next year or not so there still aren’t any results to update.  I ended up going to the GP about the headache I had last week as it got worse and she thinks I have viral meningitis, well, thankfully it wasn’t all due to the midodrine although I did reduce my dose and after several days of headache and strong painkillers that made me a little bit ridiculous I woke up this morning with a sinus infection.  Go figure.  Still, I haven’t collapsed on the floor once today so the midodrine must be doing good things!  Anyway, I should have known better than to write a letter to the powers that be asking for a break, it’s never worked before and it hasn’t so far this time.

I look around and am a little bit jealous of people with faith.  I had it once, when I was younger I used to love the comforting and spiritual feel of being in a church, belonging to something and believing there was someone out there watching over all of us.  My grandparents were the best models of christianity I have ever come across.  They were generous to those less fortunate, they were kind and understanding and my grandmother tried not to be judgemental of others and saved it up for the members of the family!  They worked with asylum seekers and any other church projects going on, they went to church every weekend and my grandfather sang the loudest of anyone there – yes it was embarrassing being able to hear him over everyone else but he didn’t care, his singing was to glory God and he would do it with his whole heart.  For all the christian ideals I have never met anyone like my grandparents and their church friends – I know I haven’t met everyone but I do know they were a rare kind of people and their lessons and experience has been invaluable, I miss them more than I can say.

So yes, I was religious, devoutly so, at one stage.  Then life happened.  Before you read on you should know, the views expressed from here on are not meant to offend anyone they are based on my feelings, experience and observations.  A friend of my family died quite young, it was tragic and I tried to make sense of it, she was funny, bright, beautiful outside and in and had so much potential.  At the funeral the catholic priest was thanking God for taking her and looking after her and I just couldn’t understand – if God truly was so compassionate and all-powerful etc as I had always been lead to believe, then why would he cut her life so short, why would he put this wonderful family through such grief?  And why (for God’s sake), why on earth would we thank him for it?  It made no sense, suddenly everything I believed in made no sense.  Thinking about it I was drawn to history, so many wars fought for religion, so many people killed because one faith believed theirs was the only way and that everyone else should believe and were lesser beings if they did not and I couldn’t condone it.  I couldn’t be a part of it any more.  Even Joan of Arc, my historical heroine couldn’t change the way I felt and she was a formidable woman – she stood up for what she believed in and wouldn’t change or give in even in the face of death.  I saw people around me living with one rule for themselves and one for everyone else.  I am better because I have faith, God will forgive me for my sins and I will go to heaven because I believe.  In my world, in my view of my faith, that didn’t work.  I don’t care if a murderer or anyone else who causes harm to others is religious, someone causing harm to other living beings does not deserve a place in heaven no matter what they believe or how much they placate an angry deity.  Getting into heaven should not be as easy as just acknowledging God exists and is the master of heaven and earth, that he had a son named Jesus and yes I have sinned but I really didn’t mean it, honestly…

So I lost my faith.  I never lost the feeling that there was something out there that started it all, the world is such an amazing place I would be surprised if there wasn’t but the christian God no longer had a place in my heart or my scientific logic.  I never bargained, ever, not when I was facing any of the many obstacles I have faced did I bargain – ‘I’ll believe in you again if you make me well’, that seems a bit disingenuous to me.

For what I have always understood about the bible it seems a little fluid and open to interpretation otherwise how can one denomination find one meaning in a passage and another denomination find a completely different one?  But try telling that to someone who is completely convinced that whatever their church tells them is the law – the beauty of being human, of being able to think and reason is that we can question what we see and hear and chose for ourselves.  It all reminds me a bit of one of my favourite trashy movies – ‘Saved’ – set in a born again high school in America where the main character falls pregnant because she has a vision of Jesus telling her to do whatever she can to help her boyfriend who has realised he is gay.  Well worth a watch if you like that kind of thing, it’s highly amusing and an interesting commentary on adolescence, devoutly religious schools and the born again christian community in America.  I am not against religion, I think that the idea of it is a beautiful thing I just think it often gets misinterpreted or the message gets lost.  You can’t expect others to ‘do un to you’ if you do not ‘do un to others’ but it seems a lot of people do.  The message (from what I can see) is to help people, be charitable, be kind, be caring and if you want someone to do something nice for you then it’s more likely to happen if you’re nice to them and everyone else – not graffiti the houses of people who disagree with you blow them up, or attack them in the street verbally or physically or shun them, make fun of them and judge them.  Like I said earlier, one rule for us and another for everyone else.  Just because someone calls themselves christian doesn’t mean they act like it.  I measure all christians against my grandparents because they were what I believe christians are supposed to be like.

Time has moved on since then, several years actually, but those experiences cemented my mistrust in religion.  It’s absence has left a bit of a hole in my life and my choice phrases – I mean really, how can you say things like ‘for God’s sake’ etc if you don’t believe in a God?  I don’t know if this will be my way for ever, maybe I will find something magical along the Camino that will restore my faith, who knows (I have to get there first and it’s getting harder to every day!).  It puts me in mind of one of the stories I liked best as a child (actually it’s the only one I remember); A man was walking down the beach with God/Jesus, he looked behind him and on the sand there were footprints stretching out for his whole life.  In some places there were two sets of footprints and in some there were only one, he noted that the times there were only one set of footprints were the most difficult times in his life.  He asked God/Jesus ‘why did you leave me when I needed you the most?’  To which God/Jesus replied ‘I never left you, the times when you needed me the most, when there is only one set of footprints is when I carried you’.  Looking back over the last few years of my life they have definitely been tough, this year in particular, so you know what?  If this is what being carried is like then put me down and I’ll walk myself!

Training for the Camino or the Olympics?

It’s strange, I was under the impression that I was planning to tackle the Camino, not become a world-class hurdler but it seems that life has other ideas for me.  I do find this notion a little ridiculous as I was always terrible at athletics (my dodgy knees saw to that) but because I didn’t want to let my house down on school sports days I was usually the one to put my hand up and volunteer for the events nobody else wanted to do (mainly shot-put, triple jump and hurdles).  Well, that and the fact that I can usually be relied upon to give something a go or be easily bullied into things if I don’t really care either way in the first place!  But I always maintained that I wouldn’t enjoy myself and would take it at my own pace because really, I was only there to put in a show for my house, not because I actually cared if I won or not.  Swimming sports was a completely different story, as a natural-born water baby I was fiercely competitive at anything aquatic and usually ended up with blue ribbons and the occasional red one.

But I digress, athletics is not my strong point but I did a lot of hurdles.  When I finished year 8, which was the highest year level my small middle school went to, and moved to a much larger school known for its athletic prowess I gracefully stepped aside for the more competent hurdlers (breathing a sigh of relief) and vowed never to involve myself in such a ridiculous sport ever again.  But it seems that despite my best efforts my planning for the Camino has involved nothing but hurdles.  The most recent being medication related.  You see, I suffer from a rather ridiculous condition known as ‘my body is stupid and can’t maintain its own blood pressure’ or more commonly known as ‘recurrent vasovagal syncope/neurocardiogenic syncope’.  Yep, not one to do things by halves I have once again picked the most fancy-sounding, least known about, non-life-threatening but rather life impairing condition to be affected by.

A couple of posts ago I wrote about starting my new medication – Midodrine (which is supposed to raise blood pressure by constricting veins).  It’s been 2 weeks now and Midodrine and I have been having a bit of a rocky relationship.  There is no doubt that some days have been pretty good but overall I have not noticed a huge improvement.  Then again it has only been 2 weeks.  I have still been having good days and bad days and I believe that on the whole it has all been a bit better than before the Midodrine, even in the hour and a half between when one tablet wears off and the other one kicks in (they are taken every 4 hours) and I regress to having a mental capacity lower than that of my dog (he can at least negotiate stairs and has a short-term memory that lasts more than 3 seconds) the number of good hours outweigh the bad.  Here is a pathetic picture of my dog just to illustrate the point…
That was until last night.  I was supposed to be going to my regional St John’s Ambulance meeting so it was a 4 tablet day instead of a 3 tablet day (so I could go the distance) but the extra tablet pushed me over the edge into ‘too much Midodrine’ territory which is not a nice place to be.  The pressure and pain in my head rivalled that of a sinus infection or migraine and it throbbed with my pulse, I was aware of my pulse beating in my neck, ears and chest and I felt rather nauseated; all I wanted to do was lie down and go to sleep but that only made the pressure worse – which is kinda the point of Midodrine in the first place but obviously not to this extent.  So it seems my body has other ideas when it comes to the miracle drug that was supposed to make it all better.  Damn.

In my misery and desperation last night I composed a letter;

Dear God, or Karma, or whoever is responsible for this crap (I like to keep my bases covered)
I have had enough, please make it go away.  I promise I will continue to live my life how I want to live it which should really be good enough for you as what I really want to do is study medicine and become a doctor so I can help people, so seriously, why would that be a problem for you?  There are thousands of people in the world who do bad things and yet they are allowed to go on living their lives and being healthy – why can’t I?  We have already established that begging, threatening, pleading and kneeling make no difference so really, what else do you want me to do? There’s not much left!  If I am somehow making up for wrongs I have done in a past life I think it’s been enough, I personally don’t think I am capable of doing anything in any life that would make me deserve this crap so stop being such a prick and give me a break.  That, and, my next life had better be a damned good one, I’m thinking princess might be good, or empress – maybe of the whole world because buddy, believe me, you owe me big time. Lets just pretend you’ve proved whatever point it was you were trying to prove and I passed whatever test it is with flying colours because, to be completely honest, I don’t really have much left to give you and I would really like to get on with living my life and doing my thing (whatever that turns out to be because I haven’t exactly had the time or the mental capacity to figure that out yet)
Yours in complete frustration
Claire

Fortunately I am not leaving tomorrow, I still have just over 2 weeks to get this right and I am determined that I will be on that plane.  The only thing that would stop me is if someone had to carry me onto the plane or there was the real potential of me arriving in Paris as a nonsensical vegetable.  There would be no point in having a holiday under those circumstances and no chance of me being able to walk more than 500m per day which would mean the part of the Camino I have decided to do would take me around 250 days to finish and I would end up sleeping under the stars most nights.  My travel insurance will not cover me for anything I have already had or any treatment I am receiving, as my mother says, it’s only money – but that is one thing I am kinda lacking a the moment so would prefer to not have to cancel last minute and lose it all.

My head feels a little bruised and fragile today but much better than yesterday – I still need to talk to my doctor though.  I am getting a little more nervous about how I’m going to cope but I wont know until I get there now will I and it is another adventure – I guess no matter what comes along I will take it in my stride 🙂

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