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.

NanoWriMo – 2nd instalment

Here is the second instalment of my story – enjoy!

Sarah sat in the waiting room outside the hospital’s employee counsellor’s office.  It was hospital policy for anyone who missed a certain amount of work due to illness or personal circumstances to see the counsellor.  Everyone knew it was often just a front, the truth of the matter was the counsellor was not really a counsellor at all; she was there to give warnings to employees who’s performance had been below par and in some cases to assess whether her ‘client’ was really able to continue to be a valuable part of the ‘Northside Health’ family.  Those who were assessed as being such would often be gotten rid of with the least amount of fuss possible under the guise of being assessed as being unfit for work on non-medical grounds (ie incompetent, dangerous or unreliable).  This practice allowed them to avoid that inconvenient return to work policy that enabled employees to gradually return to work or work more manageable hours in their period of recuperation. For an industry focussed on helping people the health care industry was notoriously unsympathetic towards its own workers when they became ill for whatever reason and Northside was no exception.

Occasionally, when the employee was too valuable to let go or too hard to replace the counsellor would arrange a return to work program for them – Sarah was hoping that her training in the area of nursing she was currently working in meant that she would fall into that category but her long record of sick leave and only being capable of part-time work made her nervous.  She hoped the appointment would just be a slap on the wrist; there was no way she could look for a new job right now.  She was sick more days than well, some days she could hardly get out of bed or would only move as far as the couch.

The ringing of the receptionist’s telephone shook Sarah out of her reverie
‘Miss Jones will see you now’ the young woman looked gave Sarah a sympathetic smile over the desk.  Sarah’s stomach dropped like a stone.

Miss Jones, the counsellor, was a horror of a woman with a minor in psychology, a six-figure salary and friends in high places.  As she opened the door Sarah was struck by a tidal wave of perfume – sickly sweet and cloying.  Then she saw the woman herself.  Miss Jones’ obviously bleached blonde locks curled stiffly around her shoulders – they looked so stripped and treated, so full of product that Sarah wondered if they would crackle like straw if you touched them.  The hair framed a face that could have been almost pretty if it hadn’t been covered in so much makeup; foundation so thick you could see it, eyebrows tweezed to within an inch of their lives and pencilled in, overly-bronzed cheekbones, thick, black eyeliner and bright, bright red lipstick.  Maybe the makeup was a last-ditch effort to preserve or give the illusion of youth, whatever the goal it was impossible to tell her age through the paint.  Her nails were fake, red talons – long and rounded, their colour matched her lipstick.  In a workplace where the majority of employees were required to wear a uniform Miss Jones had clearly wanted to stand out as much as possible and her clothes certainly did that from what Sarah could see over the desk.  She was wearing a scarlet shirt with tight sleeves that went to the elbow and a wide, low neck exposing skin that said she was either older than she appeared or spent a considerable amount of time sunbathing in her youth.  The top was set off by copious amounts of sparkly, gold-hued jewellery, black stockings and high leopard print pumps – her skirt was hidden by the desk which she did not get up from as Sarah entered the room.

‘Miss Henderson, please sit’ she indicated a small chair on the opposite side of the desk.  Sarah felt like she had been sent to the principal’s office at school and couldn’t help feeling guilty for some unknown offence she was to be reprimanded for.
‘Sarah, please’ Sarah replied ‘It’s nice to meet you miss Jones’ and extended her hand for the other woman to shake.  Miss Jones looked at her hand a moment and then took it and shook briefly before letting go hurriedly and dropping her hands to her lap.
‘Sarah, I’ve asked you here today so we could have a little chat.  You see, it has been brought to my attention that you may not be coping so well with the difficult hours associated with shift work and the demands of working on the oncology ward.  Is there anything that has changed recently that could be affecting your performance?’  Miss Jones asked, pen poised over a sheet of paper.
‘Well I have been unwell for a while but that is why I am now working part time instead of full-time as I was when I began working here.’ The pen scribbled quickly as Sarah spoke, it was a little distracting but she tried to ignore it and answer the question.  ‘It has been harder for me in recent months because I seem to keep catching things and every time I do it’s harder for me to get back on my feet again.  That is why I have put in a request to my ward manager to further reduce my rostered hours.’  Miss Jones paused and looked up, eyebrows slightly raised.
‘Right, ok then, and you’ve been with us how long now?’
‘Nearly two years’
‘Two years, really?  And how long have you been unwell for?’  It was a question Sarah always dreaded, it had been a long time and it was a long story.  A story that often provoked sympathetic or pitying looks and a change in people’s attitude, almost like she had to be treated more delicately because she might break at any moment.  And the look that Miss Jones had pinned her with was a common one too: a veneer of sympathy barely covering her slightly sneering and sceptical eyes.

‘Actually I have been unwell off and on for around seven years.  It started about half way through my first university degree and at the time I was diagnosed with Chronic Fatigue Syndrome.  Since then it has persisted but there were some symptoms and things that were inconsistent with the CFS diagnosis.  When I began my nursing degree I was improving steadily to the point where last year, the year after I completed my study, I was well enough to work full time.  This year, however, I seem to be catching everything that is going around and for the last six months I haven’t been able to get on top of it, that is why I dropped my hours back to part time.’  Sarah looked up and found Miss Jones watching her closely, her expression more intent than before and no less unsettling.
‘Well that’s a long time to be sick, what exactly is being done about that?’
‘I had some tests recently to determine if I had an immune deficiency but the results, although low, were not significant enough to qualify for the diagnosis.  I am seeing my GP soon and hopefully he will have some news for me, some new avenues to explore but at the moment I’ve had so many tests and seen so many specialists that they’re all running out of ideas’.
‘It must all be very difficult for you, how are you feeling about it?’
‘Well, to be honest it makes things a bit frustrating and all that but I believe I’m coping quite well under the circumstances.  I have a group of very supportive friends and family and of course Peter is great – he’s my partner’
‘Ah yes, of course.  And how do you feel about work? Do you feel like you are coping with it all?’  Sarah looked at her hands
‘Miss Jones, the reason why I want to cut my hours down a bit further is because I can not currently commit to the number of hours I am rostered on for.  At the moment my health is too unpredictable and I have found myself calling in to cancel a shift maybe once or twice a fortnight not only because sometimes I can’t get in to work but because my brain isn’t working so well and I wouldn’t want to make a mistake.  I would never come in to work if I thought I was not capable of giving my patients the care they need and deserve but then that can leave the ward needing to call in bank or agency staff.’  She sighed and looked back up at Miss Jones who was again scribbling on her sheet of paper.

After a few minutes that seemed an eternity, Miss Jones looked up.  She had a small smile on her face that filled Sarah with unease.
‘Well, I know if I were in your position I would be very annoyed with all of this, am I right?’
‘I am a little annoyed, it’s hard not to be really but probably more disappointed that annoyed’
‘So what you’re feeling then is a real sense of fed-uppedness with everything.  Fed up with life, fed up with work, fed up with being sick and fed up with everything, right?’
‘Um…’ Sarah started but Miss Jones just ploughed right on
‘Yes, of course you are.  Now Sarah what I suggest is this: go home, have a nice early night and a good rest, put your feet up, make sure you get enough sleep (you nurses, I know how you all like to burn the candle a both ends!), make sure that partner of yours cooks you a good, healthy meal because you’re probably lacking a bit in some essential vitamins and minerals – lets face it this canteen food isn’t amazing and we never get enough sun working indoors!  Get out there and get some exercise and sunshine and I guarantee you’ll start to feel better and less fed-up with everything.  You’re not the only one around here with a sense of fed-uppedness you know, even I get it from time to time but the important thing is how you cope with it, what you do.  Have a think about that and if you ever need a chat or anything my door is always open’.  Miss Jones smiled at her and then looked back down at the paper on which she had been so furiously scribbling moments before

Sarah left the room feeling stunned.  ‘A sense of ‘fed-uppedness?’ what, is that a medical term?  A term she learned in all of her semester of studying psychology?  The woman is a painted moron’  She grumbled to herself as she angrily strode down the hallway in the direction of her ward.  ‘Sleep?  Vitamins?  Exercise?  Did she listen to ANYTHING I just said?’

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