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 🙂

Thoughts for Friday

It’s been a while since my last post, not for lack of writing material – no, quite a lot has happened lately!  But for lack of inspiration.  Now I am inspired doubly but can’t remember the second thing I was inspired to write about (stupid dysautonomia brain!).

Today I have something sad to write about, something I didn’t really think would happen to be honest but I guess I always knew the possibility was there.  Any chronic medical condition has its complications and challenges in ways mental, physical and emotional and its important to keep going despite all this but then there are the events that shake you to the core and send shivers down your spine.  Recently the dysautonomia community was shocked by the death of one of our own.  Taken way before her time by complications of a condition not generally believed to be fatal she was by all accounts a loving, generous and inspirational person.  Our thoughts go out to her family and friends.

I did not know her personally but the messages of love and grief from people whose lives she touched around the world are heart-breakingly beautiful and help portray the image of a strong and caring woman who refused to let her illness rule the way she lived her life.  She will be greatly missed.

I was further saddened to hear that she is by no means the first to pass away from complications related to dysautonomia, not even the first this year.  There are different types of dysautonomia that stem from different causes and have a variety of symptoms but the common trend is that the heart’s function is affected in some way.  Whatever the diagnosis is, POTS, NCS, OI, IST – whether it is low or high blood pressure, tachycardia or other irregular heart rate the heart is involved as part of the dysfunctioning autonomic nervous system response and has to work harder than normal.  Our hearts were not made to run marathons without the rest of our bodies participating – it’s no wonder we feel dreadful when it happens.  Don’t get me wrong, I would actually love to be able to run a marathon but I would like my entire body to actively participate at once – imagine if your legs did it by themselves, or your lungs, that would be a bit odd right?  Well why do so many people, health professional and lay-person alike, think it can’t be such a bad thing for our hearts to do it?

Now this condition (or group of conditions) is becoming a bit more widely acknowledged we are starting to see more results; new studies into causes and treatments, new treatments made available, word of mouth from others in the same position but for some this is, sadly, too late.  Who knows how many people have died from dysautonomia-related causes, we will probably never know.  We’re told repeatedly that it could be worse, we could have cancer, we could be terminal – all we ask is to be taken seriously.  It doesn’t take much out of your busy day to look up what dysautonomia is or be a little sympathetic, a little insight and compassion goes a long way.

And here’s a little something to help with the insight 🙂

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)‘.

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.

50k for awareness/NaNoWriMo – now it’s not so complicated!

‘Oh thank God for that!’  Kaitlin exclaimed when they picked up Sarah the next day for their holiday and she told them what had happened the night before.  ‘So does that mean you’re getting rid of him for good?  I hope so, never liked him anyway and that means there will be 3 of us single for this cruise not just 2!’
‘Well thanks for telling me earlier!’  Sarah laughed, ‘you could have saved me a lot of time and effort.’  Viv gave her a hug around the passenger seat ‘and we haven’t technically broken up so a holiday romance would be considered cheating I guess’
‘You’ve always got us hon, we’re so much nicer, more awesome and far better looking that Pete!’ she grinned.  Sarah laughed again
‘What a dick!’  Cried Cath ‘his loss anyway, you’re far too amazing for him and besides, Viv is right, you have 3 awesome mates who love you heaps and know exactly how great you are.  That and, if you’re going to break up with him when you get back and you’re sure he feels the same way then is there really a problem if you find someone nice on the boat?’
‘Thanks ladies!’  Sarah grinned ‘I know I can always count on you to be confusing! I guess I’ll address the question of holiday romance if it comes up.  But yeah, I dunno, I guess my relationship with Pete had just run its course but it’s pretty frustrating to know I spent so much time and effort for nothing.  I almost wish I hadn’t.’
‘You can’t say that!’  Kaitlin interjected ‘he did have some redeeming features’
‘Like what?’ Cath laughed ‘I don’t recall seeing any!’
‘Well you obviously didn’t see him from behind then’ Kaitlin winked ‘his best angle was walking away!’  They laughed
‘Oh yeah, I did notice but John’s is better’ Cath said faithfully
‘You always say that Cath’ Viv laughed
‘Can’t help it if my hubby is everything I find sexy in this world!’ Cath stuck out her tongue at Vivienne
‘I think we might just have to agree to disagree on that one…’ Kaitlin replied ‘now, which ramp do I have to drive up for domestic departures?’  They had reached the airport.

After an unusually fast check-in, airport shopping and boarding they were on their way.  Sitting 2 in front and 2 behind on the side of the plane they could chat with ease.  ‘What about that guy Steve?’ asked Viv sitting in the seat next to Sarah; ‘he was nice and you guys seemed to have a lot to talk about at my party a few months ago!’
‘Yeah, no.’  She replied quickly.  ‘Firstly – I’m not ready to jump straight into another relationship, secondly – Pete and I haven’t actually officially broken up, and finally that guy was a ‘wounded bird collector’.’
“What’s that mean?’ Asked Kaitlin from the seat in front
‘Meaning he was one of those guys who wants someone to take care of, so he can feel like his role as the big protective man is being validated and satisfy his need to be needed.  He’s not the first one I’ve met and I don’t need that!  I want someone to want to be with me because they love me and appreciate my good qualities enough to ignore my bad ones, not because they feel sorry for me and want to take care of me.  That’s not enough!’
‘You mean there are people out there like that?’  Cath asked ‘how bizarre!’
‘Yeah, you’d be surprised!  Their eyes change when you tell them about your being unwell and how it impacts on your life, I mean, everyone reacts differently but it’s odd, they get more interested, ask so many questions, call you ‘poor thing’ and ‘so brave’ and all that.  I just want to be treated like a normal person!  Sympathy is fine and all that but it’s not my whole life, I am a person separate from my illness, it’s not my life and I don’t like to be identified like that!’
‘Ok then, we’ll just have to find you someone on the cruise with as good a rear view as Pete, if not better, who isn’t a complete ass and doesn’t treat you like an invalid.  Shouldn’t be too hard, how many thousands of people does the boat hold?’
‘We may have some luck if they’re not all over 50!’  Kaitlin giggled ‘and who knows, I’m not looking to settle down and get married or anything like that, but a holiday fling might be nice!’  They laughed and agreed.

Pete was waiting for her when she got home two weeks later.  They hadn’t spoken while she was on the boat, partly because her phone had no signal on the open water and partly because she was having too good a time to bother.  At first Sarah had thought she was alone.  Walking through the front door in the dim half-light of twilight the house appeared to be in darkness.  She called out his name and was met with silence.  Her throat was getting more sore by the minute, talking was an effort and she could feel a cold coming on.  She sighed and lugged her suitcase down the hallway.  The 2 weeks away had been wonderful but someone on the boat had brought a bad cold with them and by the time they pulled into port on the last day a considerable proportion of the passengers and crew had come down with it.  Sarah had avoided it for 2 weeks but woke that morning with a headache, sore throat and feeling a little under the weather.  As she got closer to the kitchen she saw there was a light on so she left her suitcase in the hallway and wandered in.  Pete was sitting at the kitchen table with a beer bottle resting between his hands on the table.  He looked up and gave her a wry smile.  ‘Have fun?’ he asked and continued quickly, not giving her time to reply.  ‘I’ve had a lot of time to think over the last week, I’ve talked it over with mates and my brother and I’ve decided.’  He paused for effect but there was no point, she knew what was coming and had come to the same decision herself.  It had been a busy couple of weeks and there hadn’t been much spare time to think it over between swimming, bingo, cocktail parties, themed nights, island visits, sunbathing and re-enacting the famous Kate and Leo on the prow of the boat scene from Titanic but she realised early on that she didn’t really need much anyway.  She had already made her decision.
‘Before you continue Pete, I have something to say’
‘No!’ he interjected quickly and passionately, slamming his bottle down on the table for emphasis; ‘you’re going to hear what I have to say first!’  She sighed and sat down
‘Whatever.  Go for it’

‘I can’t stand it, I’ve had enough and I’m moving out.’
‘Well that was straightforward, to say the least’ she said bluntly.
‘It’s not you, it’s me.  I thought I could cope but I can’t, it’s too hard’
‘Wow, that one was original Pete, think of that all by yourself did you?’
‘Gah, you’re so frustrating!  Actually, you know what, it is you.  We never go anywhere or do anything because of you, because you’re either too tired or working or whatever.  I want to do things; I don’t want to be stuck at home all the time.  I can’t live like that and neither should you.  For the last year I’ve watched you deteriorate from the happy, fun person you were to this, whatever you are now.  I know you can do more than you do, I’ve seen you do more, you just don’t have as much faith in yourself as I do.  Just suck it up and go for it.  There are times when you can do heaps, usually when you’re on holiday.  Maybe you just don’t like work, I don’t know!  Maybe you just don’t want to live in the real world where people have responsibilities, have full time jobs, mortgages, and families – they struggle yeah but at least they try.  I know you genuinely do get sick but have you ever thought that maybe you’re making yourself sick?  Maybe it’s all in your head.  Maybe if you just ignored it and kept on going you’d be fine.  You’re so negative all the time; maybe if you just thought differently you’d kick this.  So do me a favour yeah, when I leave, when I’m packed up and all that, don’t mope around the house feeling sorry for yourself.  Don’t make everyone else feel sorry for you.  Don’t be the martyr saying you don’t need help and all that bullshit while you visibly fall apart just for the attention – grow up and get yourself a life.’
‘Wow, that’s just great, thanks Pete.  ‘Suck it up and go for it?  Grow up and get yourself a life?’  That’s about as helpful as that time someone told me to ‘just get a good night’s sleep’ to cure Chronic Fatigue.  I thought you understood what I was going through, what all this meant for me; how it impacted on my life but obviously I was wrong.  If you think that I don’t try, that I let it get the better of me, that I chose to be like this then you obviously don’t know me at all and that makes me sad.  To think I spent the last year of my life with you and you don’t even understand me a little bit – that’s depressing!  And you know what, I’m not even going to try explaining myself to you because you obviously have your opinion firmly set and nothing I say will change that.’  She stood up from the table.  ‘If you need me I’ll be at mum’s.  Take all the time you want packing up your things but make sure you don’t take anything of mine or leave anything of yours behind – I don’t particularly want to see you any time soon.’  She turned to leave
‘Is that it?’  He cried ‘a whole year of being together, 6 months of living together and that’s it?  You don’t even care!  Man, why did I bother!’
‘No Pete, that’s not true, I do care and thank you for the times you helped me, the times you did care, and thanks for trying to understand for a bit.  Someday you’ll make some uncomplicated and undemanding woman very happy but I don’t need someone like you in my life now or ever so no; I’m not completely distraught at your decision, I had come to the same conclusion myself.’
‘I knew it! You’re making it all about you’
‘But Pete, you said it was about me!’  She turned and left.  It wasn’t hard, her suitcase was already packed from the holiday and while she wouldn’t require the cocktail dresses, bathers and jewellery at her mothers place there were clothes and pyjamas that would do for the time being.

 

This keeping up the numbers bit is hard, why is this coinciding with what seems to be my busiest month of the year?  On the plus side I’m doing really well, the Mickel therapy is doing good things for my CFS and changing around the doses of the Fludrocortisone and midodrine seems to be working well – fingers crossed it continues to do so!

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