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)‘.

6.  Treat yourself.  A bit like number 5 but also a little different.  You need to feel loved and special and if that means treating yourself to a massage, spa treatment, shopping trip, day off, holiday, puppy cuddles, sleeping in or something else you’ve been wanting to do for ages but didn’t have the time or didn’t think it was important enough – just do it!  Yep, we’re using the Nike slogan but that’s because it’s good!

7.  Learn to say NO!  This one is a pretty big undertaking and rather important.  If you have been pushed around and taken advantage of for years it can be hard to change the trend.  If you need a bit of help the issue has been addressed in many movies – ‘27 dresses’ is one of my favourites for this!  It may not sound difficult to a lot of people but it can be, think back to number 5 and remember to put yourself up there on your list of priorities.  Start with something small and simple and work your way up from there.

8.  Express yourself.  A lot of us often find that in the heat of the moment we have trouble saying exactly what we want to say to people who have upset us – this is completely normal!  It’s hard to say exactly what you want to say when emotion is involved, it’s way too easy to get caught up and forget your words!  So take a step back, think about it for a while and then come back and say what you have to say.  There is nothing wrong with re-addressing an issue later down the track once the heat has gone out of it.  Think clearly and concisely about exactly what it is that you want to say; exactly what you are upset about and why or what you want to talk about and why.  Try to separate the person from the action, it is very important so they do not feel like they are being unfairly targeted and respond in kind which can result in a bit of a kick to your confidence.  Emotive statements are great for getting across how you feel without sounding like you’re attacking the other person – for example; I feel sad/angry/hurt/offended when … happens/when you… so I feel offended when I believe there is racial prejudice going on at work.  And use specific examples.  It is important for people to understand how their actions impact on you – they may be completely unaware they are having any effect on you whatsoever if you never say they are.

9.  Practice, practice, practice.  Who hasn’t heard that one before!  Well it is important, the more you work at something the easier it becomes and the better you get at it.  You don’t have to suddenly throw yourself in the deep end, build up to it slowly and instead of avoiding situations of conflict, public speaking or other situations that make you nervous expose yourself to them slowly and make sure you’re prepared – not over prepared because then it is just as likely that you’ll keep getting prepared, be convinced you’re never prepared enough and then not do it!  Whenever I have to perform or speak in public, or even answer a question in a meeting or class I still feel a flutter of nerves but the more often I do it the easier it becomes.  12 months ago I went on a cruise with friends and there was a karaoke competition.  The first song I performed I couldn’t feel my legs – that used to happen to me a lot and I realised that I was just out of practice.  By the final round several days later I was dancing on stage during a musical interlude in my song (and I didn’t even know the song).  Practice, practice, practice!!

10.  Don’t sweat the small stuff!  Kinda along the same lines as ‘stop second-guessing yourself, point 4).  Lets face it, confidence goes hand in hand with stress and that little voice in the back of your head that worries about everything; what people think, what they say, whether you made the right choice, whether you are going to make the right choice and so on.  The saying ‘don’t sweat the small stuff’ is very appropriate but I prefer ‘don’t stress about the things you can’t change and focus on what you can’.  You can’t change the weather, you can’t make your tram run on time, once you submit that completed application you can’t make them pick you.  AND if you paint something the wrong colour you can always change it later, if you take a wrong turn you can always retrace your steps.

11.  (A bonus one!)  No one can do it for you!  No one is going to make your decisions for you, if someone stands up to someone else for you it’s not really going to solve your problem and make you feel better and when you do you’ll feel great in the long run (admittedly the first couple of times you might feel a little ill from the nerves and adrenaline but after that passes you can congratulate yourself!).

There are many situations out there that can affect your confidence and courage and many types of situations that can do the same.  Bullies range in severity from those who physically bail people up for money etc to those friends who unknowingly wax lyrical about a particular issue they feel very strongly about ad nauseum without realising they are making others uncomfortable or upset or just plain annoyed.  Taking this on, sticking up for yourself, questioning unfair treatment by others and making yourself heard can be difficult; particularly if it is not something you are accustomed to doing for whatever reason.

For me, many of the experiences I had growing up that shaped the person I am today were also completely confidence shattering and it took a long time to recover.  To put it briefly – a lot of shit happened and I learned from it because I was able to, because that is the person I am and the view I have but not everyone is the same.  I hate the saying ‘what doesn’t kill us makes us stronger’; it’s ridiculous.  Tell that to a victim of abuse, someone who has had to flee their country to avoid persecution and left their family behind, a mother who has had to bury her child or someone suffering from PTSD.  It’s not helpful in the moment so just don’t say it.  Some things that are hard we can learn from, we can become resilient.  But sometimes, some people just break and they’re allowed to, sometimes shit just happens and there is no sense in it and nothing good to learn. Humans are resilient but most of us can’t do it on our own, I couldn’t and there is no shame in asking for help.  The most important thing to do, the very fist step to becoming confident and happy is to be brave and say ‘I CAN’.

In the beginning of a journey to confidence courage and confidence are paired, after that stage courage is more linked to happiness – happiness with your life, where you are in it and who you are as a person.  Courage is so much more than becoming a superhero – risking your life for others, doing something dangerous.  Courage is different for everyone.  It takes courage to try something new whether that is sky diving or changing your hair colour.  It takes courage to stand up for what you believe in whether that means being arrested fighting your cause or telling someone you care about that they are smothering you (in some ways this takes more courage). There is a lot out there about courage ranging from Eleanor Roosevelt’s famous quote; ‘Courage is not the absence of fear but rather the judgement that something is more important than fear’ to the song ‘I whistle a happy tune’ from the Rodgers and Hammerstein production of The King and I.  Then there is always Strictly Ballroom’s ‘A life lived in fear is a life half lived’.

Thinking through what I’ve learned over the years showed a number of steps and I have tried to write them down as succinctly as possible.  Here are the first 5 with 5 more to follow in a future post – all together would make a mammoth post and it is also a lot to take in at once!

1.  Know you’re awesome.  Make a list titled ‘why I’m awesome’ and fill it with all the things you like about yourself, all the things that make you an individual, all the things that make you awesome.  It can be anything from ‘I have green eyes’ to ‘I told Paul Smith to piss off in primary school when he was being mean to me’ to ‘I got an A on my English work in year 5’ or ‘I have perfect teeth’, ‘I mastered turn-around toe stops in one day’, ‘I speak more than one language’, ‘I travelled overseas’, ‘I am a safe driver’, ‘I have amazing friends who love me for who I am’ and ‘I cook a mean lasagne’.  It doesn’t matter what is on that list as long as it’s something you feel good about.  If you need help ask your friends and family, I’m sure they’ll be happy to oblige.  Here’s some inspiring music

2.  Act confident.  I know it sounds cheesy (don’t we all love a good dose of cheese?) but if you act more confident than you feel on the inside people will begin to think you are confident and will treat you accordingly.  After a while you will begin to believe it too.  This works in the short term but after a while you will need something more solid to work with which is where the rest of the points come in!

3.  Be comfortable in your skin.  If you are happy with the way you look you are more likely to feel confident about yourself.  No, really!  Remember that time you wore that outfit that you weren’t sure about that someone talked you into wearing and you spent the whole event feeling self-conscious and hiding near the wall watching that person in the amazing outfit that oozed confidence and looked like they were having the time of their life?  Yeah, see?!  It is highly unlikely that everyone will ever be completely happy with every part of his or her appearance so work with what you are happy with.  You may have a gorgeous smile, lovely legs, nice arms, beautiful hair, pretty dainty feet that can fit any shoe, a graceful neck that flatters any jewellery, fabulous taste in clothes, a left elbow that people come from miles around to see or a right shoulder blade that is the talk of the town.  Whatever it is it is yours so be proud of it.  If you feel you need a bit of help there are wonderful books out there on how to dress to flatter your figure – try Trinny and Susanna’s what you wear can change your life or similar books.  If you’re concerned about not being able to do makeup properly to enhance the right features book a makeover with a respected salon or makeup company.  Or if you really want a complete overhaul there are always image consultants and image development courses that can teach you all that and more.  Everyone is different so find what works for you.  When you’re happy with how you look on the outside you’ll feel more confident on the inside and always remember the words of Lady Gaga – ‘I’m beautiful in my way ‘cause god makes no mistakes, I’m on the right track baby I was born this way’.  Whether you believe in God or not or enjoy her music or not is beside the point really, the words are good!

4.  Stop second-guessing yourself.  Make a decision and stick to it, don’t agonise over it for days afterwards and beat yourself up for making the wrong choice.  Once you’ve made it that’s it, there’s no going back.  Not to say you can’t consider it properly but set aside a certain amount of time to do it, think clearly; weigh up the pros and cons and how your choice makes you feel.  If you feel you have made the wrong decision, make a different one next time but stop stressing about it now!  The saying ‘don’t sweat the small stuff’ if very appropriate but I prefer ‘don’t stress about the things you can’t change and focus on what you can’.

5.  Look out for number one.  Ok so it might seem a little selfish to some people but you are important.  One of the most important things I learned from my Camino is that nobody can walk it for you, just like nobody can live your life for you so you have to be in a position to do that – you have to be well enough and happy enough.  If that means just dropping by a gathering instead of staying for hours because you feel you should when you’re exhausted and stressed then so be it.  If it means picking up a cake from a bakery instead of making it yourself cause you ran out of time then so be it. If you’re stressed, run down, unhappy and exhausted by your life then make some changes – you can’t be happy that way and happiness affects confidence.

I hope this has been helpful to anyone seeking some hints on boosting their confidence.  It’s not an overnight change and takes some work but at least this is a start!  The 5 remaining steps will follow shortly

• 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.

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!

‘Talk me through the process Sarah’ Dr Caldwell asked, ‘where are you up to and what is left to do?’  She took a deep breath.
‘Well, The first step is the initial blood test to see if the results are significant enough to warrant further investigation, the results of that can take up to a month to come back because it is only ever done when there are enough samples to warrant it and not many people have this test.  When my results came back there were two sub-types of Immunoglobulin G that I am deficient in and they are the ones that are often found to be deficient in people with recurrent infections.  The second step is a long-term course of antibiotics – 6 months, which I have 2 more months to go on.  After that, if there are still infections despite the antibiotics there is a vaccination.  Then 4 weeks after the vaccination, after your body has had time to build up antibodies to it, there is another one of those month-long blood tests and if the results are significant I then have to wait for the blood bank to approve the release of the immunoglobulin infusion.  If they do, I then have to have it every month or so for a year or longer at around a grand a pop!’
‘Wow’ he said quietly, ‘that is a lot to take in’
‘Ha!’ she laughed bitterly, ‘you’re telling me!  And this is why I desperately need to keep my job.  Dr Harman’s medical certificate was inadequate, it did not contain the information my employer required and it was slightly insulting to boot.’
‘Oh dear!’ he exclaimed, ‘well he did insist on writing them himself’, did the appointment go well otherwise?’
‘Let me just say Dr Harman and I will never see eye to eye on anything I don’t think!’  She grinned
‘Oh dear me!  Well let’s get this sorted and then it’s one less thing you have to worry about!  The certificate I gave you last time allowed you to reduce your fortnightly shifts from 9 to 7, lets bring it down to 5 and include a bit about those late-early shift combinations that seem to affect your health so much.  Hopefully whoever is doing your rosters will take note of that and you’ll be able to work to the end of your contract in a few months and then hopefully you’ll have picked up enough to either get it renewed or find something else.’
‘Sounds great Dr Caldwell, and what is even more great is that in a few days I get to go on a cruise holiday with a bunch of friends to some sunny and gorgeous islands in the pacific!  Pete can’t come but we’re going to have a fantastic time anyway.  My contract expires two weeks after I return but for a week at least I get to forget about it!’

She left the doctors clinic feeling more positive about her situation than she had for months but it didn’t last very long.  She was able to fax her medical certificate in to work but had to take more days off to recover from the virus she had come down with.  It took nearly 2 weeks for the dizziness and fatigue to reduce to a level that meant she was able to work again.  The new roster was faxed to her and the first thing she noticed was that out of the 5 shifts she now had in the next coming fortnight four of them were a pm-am shift combination – something that Dr Caldwell had specifically requested against in her certificate.  She was filled with disappointment and a growing sense that her contract was not likely to be renewed after all.

Needing some support and constructive advice she attempted to talk it over with Pete;  ‘you know how I feel about all of this Sares.’  He replied with a sigh, ‘I hate it; I hate how our lives have changed, how it makes us feel, how it dictates what we can and can’t do.  I can’t stand it.  We used to go out and have fun, hell, we used to BE fun!  Now we’re lucky if we get out once a month and you’re always too tired or whatever to stay long whenever we do anyway!’
‘Yeah thanks Pete, that’s actually not what I was talking about but hey, thanks for your support anyway.’  She snapped and walked off.

He found her in their slightly overgrown garden, sitting on the picnic table.  ‘I’m sorry’ he sat down beside her ‘I am, I just don’t know how much more of it I can take.’  Tears sprang to her eyes and she turned her head away from him so he couldn’t see.
‘You don’t have to take it; you don’t have to take anything!  You don’t have to wake up every day feeling like you need about a thousand hours more sleep, you don’t have to struggle every minute just to remain upright, you don’t have to eat tonnes of sugar and caffeine just because it might possibly compensate ever so slightly for the energy or concentration that you’re lacking and you don’t have to watch your 20’s, supposedly the best years of your life, pass you by without being able to do a thing about it.  You can go out, I’m not stopping you.  You don’t have to stay here all the time just because you feel sorry for me; you know how much I hate that.  I’m not some wounded bird that needs wrapping in cotton wool, I have an illness, it affects my life and what I can do with it but I’m not broken Pete, and I have a mother, you don’t need to do that!  Just because I can’t do things doesn’t mean you don’t have to.  How many times do I have to tell you that?  I know it’s hard for you too Pete but it doesn’t mean you have to give up your life too!’  She looked into his eyes.
‘Yeah I know’ he looked at his hands ‘I want to share it with you, you know?  You’re my girl.  You’re smart, funny and beautiful and I want the world to see that, it kills me to see you locked up in the house, a prisoner to your own body.  I want to help you, to take it all away.  You were sick when we met but I didn’t care.  Your courage touched my heart, you’re so special and amazing and yeah, I did feel a bit sorry for you and I could see you needed help too, help I was more than happy to give you.  But Sarah, even though I love you so much I don’t know how much more I can give.’
‘Does that mean you are just here because you feel sorry for me.’
‘Don’t be ridiculous!’  He snapped ‘you’re such a martyr, all the time, it drives me crazy!’  He jumped up from the table ‘look, you’re going away on that cruise tomorrow, I think that’s great, it’ll give us both some time to think.  In fact I might head over to my brothers place tonight and stay there for a few days too.  There’s a game on this evening and he’s having a few mates over for drinks and a barbeque.  It’ll be good to get out, this house is stifling.’  And with that he stormed inside.  She could hear him stomping around the house and 5 minutes later the front door slammed.  It was then she realised she hadn’t tried to stop him.

I’ve been a bit slack with my writing over the last few days so really have to step up the pace…
Hope you enjoyed the latest instalment!

A few minutes later Jenny, the ward manager came over and took Sarah to the handover room.  ‘What’s going on Sarah?’ she asked gently
‘I don’t know’ Sarah groaned ‘I feel nauseated and my head hurts and I feel like I’m going to pass out!’ she explained what had happened the day before and how she had thought she would be ok for work until she woke up but by then it was too late.
‘Well that’s silly’ Jenny replied, ‘I know we all hate it when people call in sick late but really I’d prefer you weren’t here if this is going to happen!  You have to take care of yourself Sarah.  Last week you explained to me what was going on and that you were sorting out your hours but until that goes through you’re just going to have to have leave without pay on the days you can’t work.  Just try and call in as much in advance as possible so we can sort out a replacement for you on those days.   But right now I think you need to go home, can your doctor fit you in?  Or actually, I’d probably prefer to send you down to emergency to get checked out then leave your car here and get someone to pick you up or take a taxi home.  You lie here a bit and I’ll find a wheelchair for you.’  Jenny turned out the lights as she left and Sarah groaned to herself as she lay on the floor – utterly pissed off.  Every time she opened her eyes the room spun around.

The feeling reduced a bit when they were closed so she kept them closed.  10 minutes later the door opened again, it was Jenny with a wheelchair.  ‘Ok my lady, your chariot awaits!’  She grinned from the doorway ‘can you get in or do you need help?’  She gave Sarah a hand to the chair and put her handbag on her lap.  ‘Lets go!’  She pushed her through the corridors of the hospital.  Sarah was embarrassed to be in a chair in her uniform and she received more than one puzzled look or cheery wave as they passed hospital staff on their way.  The triage nurse was cheerful and patient.  Being a small private hospital the emergency department was very quiet; only a few cubicles were filled and there was nobody waiting.  Jenny made sure she would be ok and then headed back to the ward.  ‘Look after yourself Sarah and let us know how you get on’ she waved and disappeared up the corridor.

Sarah gave her medical details to the nurse in exchange for a specimen jar and the nurse pointed her to the bathroom.  Afterwards she was led to a cubicle and given a gown to change into.  She was cold, nauseated and the room still insisted on spinning despite her politely asking it not to.   Ten minutes later another nurse came in to check her vital signs.  A further ten minutes later a man in a white coat walked in.  ‘Hello, I am Doctor Mali, I am a locum doctor just filling in today so I am not usually at this hospital.  What has brought you here today Miss Henderson?’  Sarah explained what had been going on in the last 24 hours.  When she had finished Dr Mali checked the notes the nurse had written up, looked at her eyes, ears and throat, ordered some blood tests, an anti-emetic and some intravenous fluid and left.  The nurse had trouble finding Sarah’s veins but was successful after 3 attempts and filled the 4 test tubes Dr Mali had ordered.  She hooked Sarah up to the fluids and gave her an extra blanket then began to extract the anti-emetic from the vial.
‘What’s that one?’  Sarah asked her.
‘It’s metaclopromide’ the nurse replied tapping the bubbles out of the syringe.
‘Oh, I’m so sorry,’ Sarah said, ‘I actually can’t have that one intravenously, I react to it so I’d really rather not have it!’
‘Oh really?’ the nurse looked at her curiously.  ‘I’ll let Dr Mali know’ and she walked out.

Two hours, half a bag of fluid and still no anti-emetic later Dr Mali returned.  Sarah had spent her time staring at the ceiling willing the room to stop spinning but it still ignored her.  She distracted herself for a while listening to the complaints of the elderly woman in the next cubicle who seemed to think she was in a hotel not a hospital but nothing could distract her for long.  He pushed aside the curtain without calling out to alert her to his presence.  ‘Your blood work looks fine and your blood pressure seems to be ok.  Is there any chance you may be pregnant?’
‘No I don’t think so, and I tend to have a postural drop in my blood pressure occasionally.  It’s usually fine when I am lying down.’
‘Are you sure you couldn’t be pregnant?  I’d like to do a pregnancy test to be sure’
‘No, I assure you that’s not necessary’ Sarah replied, irritated.  She was consistently on the pill to treat her endometriosis so only ever menstruated every 3 or so months when she forgot to take it.  Peter always wore protection and they hadn’t discussed having children, their relationship was not at that stage yet.  Also she didn’t think she could cope with kids while she was unwell.  On top of all those issues they had either been too busy or she had been too tired or unwell in recent months to be any more intimate than the odd snuggle.  There was no chance she could be pregnant and she was getting annoyed with the man for not listening.  He clearly had preconceived ideas about what would be wrong with her and was not prepared to explore other avenues.
‘Miss Henderson it’s very common for women to not realise they’re pregnant then have an episode like this one.  I really would like to test you just to make sure.’
‘No, it’s really not necessary, in fact if I were pregnant it would be a miracle.’  He frowned.
‘Ok then, lets have a look at what you’ve done today, what have you had to eat and what medications are you on.’

Sarah listed what she had had for breakfast and its accompanying medications.  ‘Phentermine?  That’s an appetite suppressant right?  That can cause dizziness and headaches, I think that will be what’s caused this.’
‘Doctor Mali I have been taking the Phentermine for 4 months now, surely if I was going to be having side-effects from it I would have had them by now.’
‘Not necessarily.  Yes, I’m sure that’s what it is, you should stop the medication now and you will be fine.  Ok?  Yes, now you can go home, do you have anyone to pick you up?’  She told him she would catch a taxi.  Sarah was annoyed, after her experience with Dr Harman she didn’t want to ever get another hopeless, unsympathetic, unimaginative and set in their ways doctor ever again but it seemed she had.  All she wanted to do now was go home to bed and feel sorry for herself and maybe call her mother, a GP, to see what she suggested.

15 minutes later she had been unhooked from the drip and had dressed herself with some difficulty.  Holding on to the reception bench top she worked her way around to the front and settled her account.  The receptionist called a taxi and showed her the waiting room seats.  Sarah had only just sat down when Dr Mali called her over from the desk.  ‘I have that medical certificate for you Miss Henderson’.  She got up slowly and carefully walked towards the desk with her hands out to balance.  ‘Are you ok?’ he asked walking around the desk to meet her half way.  Sarah gritted her teeth in irritation and said nothing.  ‘Do you want to lie down again?’  Concern finally written on his face.
‘No!’  Sarah replied shortly.  ‘All I want now is to go home to bed and call my mother who is a GP and will actually listen to me and take care of me when she finishes work for the day.’  He looked surprised and slightly embarrassed as he handed her the certificate.  She headed back slowly to her seat and he hovered anxiously nearby probably to make sure she didn’t collapse and then report him she thought bitterly.  Finally the taxi arrived to take her home.

Word count today is 12953 – over 1/5 of the way there!

‘Suckers for punishment’ she mused to herself.  ‘Seriously, who needs to do that much exercise in one day?  That’s bordering on addiction!’  Then ‘wow, it’d be awesome to have that much energy!  Can’t even imagine what that would feel like!’
‘What are you muttering about?’  Asked a voice behind her.  Sarah turned slowly and found herself immediately enveloped in a hug.  ‘Sorry I’m late Sare-bear, couldn’t find my keys could I!  Then they turned up in the fridge.  Go figure.’
Vivienne was habitually late, lost or double-booked as, if she didn’t write things down in her diary, she wouldn’t remember them.  She was the most forgetful person Sarah had ever met but it was never malicious, frequently endearing and made Sarah feel somewhat better about her now faulty memory, which, before getting sick, had been almost freakishly fantastic.
‘It’s all good’ she replied to her friend.  ‘I figured something like that might happen so I told you the class started 15 minutes before it actually does – you’re right on time!’
‘You cow!’ Viv laughed, ‘good move girl, cunning and cheeky but a good move nonetheless.’  Sarah bowed
‘Glad you liked it.’  Then the instructor appeared.  He was tall and well muscled with a tribal wing tattoo on one tanned arm.

‘Welcome ladies’ he grinned as he opened the door and ushered them in.  ‘This is the first class of the series so I hope you enjoy it and continue to come back.  Now, anyone with any boxing experience?’  Sarah put up her hand along with two others; she had been learning boxing as part of her weekly sessions with her personal trainer that had been going on for 5 years.  ‘Right, 3 out of 10, that’s pretty good.  So if you could all pair up and grab a pair of gloves and a pair of sparring pads we’ll get started with the 5 main numbered punches.’  There was a scramble for gloves and Viv and Sarah were left with some that were a little big.

The class was tough.  It went for 45 minutes and was non-stop action throughout.  They boxed and kicked their way through countless combinations paired with squats, shuffles, sidesteps and jogging.  By the time it finished they were exhausted, sweaty and breathless but very pleased with themselves.
‘I think we’ve earned a coffee and some shopping’ Viv gasped as they left the circuit room on slightly wobbly legs.  ‘I honestly don’t think I’ve worked that hard in ages but gee it was awesome!’
‘Completely agree to both statements’ Sarah agreed with a grin ‘your car or mine and where shall we go?’
‘Ooh, Greenvale I think and I’ll drive, it took so much effort to find my keys this morning I might as well put them to use!’ Viv laughed.  They drove in convoy to Sarah’s place just 5 minutes from the gym and then set off to their favourite shopping centre in Viv’s little car.
It was a warm and sunny day but they didn’t feel bad about being inside, they’d done their exercise and there were plenty more hours in the day.  The traffic was light and it only took them 20 minutes to drive.  Sarah was starting to feel tired, achy and lightheaded – she assumed it was the exercise and she would pick up after some lunch.

They ate lunch and then browsed the stores for an hour, picking up a few things on the way but Sarah was losing her enthusiasm.  The fluorescent lights were beginning to give her a headache and she was still feeling quite weak and wobbly.  They turned a corner and went into their favourite bath products store.  The strong scent of all the various products irritated Sarah’s nose and made her head ache even more.  After a minute or so she couldn’t stand it and had to get out of the store so she headed for the entrance, muttering something to Viv on her way past.

Out of the store she closed her eyes and took a few breaths.  She felt very odd, her head was pounding and spinning, her heart was racing and she felt weak.  Then she looked around and started to panic.
‘There you are’ said Viv walking up to her, ‘I’ve got a couple more things to do then I think it’s cupcake time, lets go!’  And she headed off.  Sarah looked around, the feeling of panic grew as she realised she had no idea where she was.  She knew she was at the shopping centre but she couldn’t place herself inside it.  Her normally spot-on sense of direction had completely failed and it terrified her.  She was confused and overwhelmed.
‘Viv!’ she managed to squawk.  ‘Where are we?  I don’t know where we are, I’m lost’
‘We’re at Greenvale shopping centre’ Viv replied concernedly, coming back and standing next to Sarah, she put her hand on her arm gently ‘are you ok?’
‘No! I mean, yeah I know we’re at Greenvale but I don’t know where abouts, my brain can’t get around it, I can’t figure it out.  Can you help me, please?’  She took her friends hand.
‘You’re saying that to the person who usually has the worst sense of direction ever but I never lose myself in here!’ Viv laughed ‘and yes, of course I can.  I still need to get a couple of things are you ok if we do that or do you need to go now?’
‘I’ll be fine’ Sarah replied ‘well, not quite fine but I’ll survive just don’t lose me or I’ll never get out of here and will probably end up in a ball on the floor bawling my eyes out!’

Viv quickly finished her shopping and drove Sarah home.  ‘Is there anything you need me to do?  Is Peter home?’ she asked as they pulled up in front of Sarah’s house.
‘I’ll be ok, I think I just need to have a rest, maybe I’m getting a migraine, my head feels like it might be.  Pete will be home later this afternoon.’  Sarah let herself in.  Viv followed to make sure she got in safely then gave her friend a hug and turned to leave.
‘Sure you’ll be ok?’
‘Yeah, I feel a bit silly but it was really strange.  That’s never happened to me before’ Sarah said wanly from the couch.
‘Well call me if you need me, anything, I’ll come over.’  Viv smiled and walked out the door closing it behind her.

Sarah spent the rest of the day lying down, her head was in agony and every time she tried to stand the room started to spin and she felt nauseated.  She wondered if she would get to work the next day but decided that her energy had been pretty good lately and she would be fine the next morning apart from the inevitable migraine hangover which didn’t normally stop her from being able to work.   Pete came home late in the afternoon and grumbled to see her on the couch but he was more sympathetic when she told him about her day.  He had spent the morning playing basketball with his friends and afterwards they went back to someone’s house for a barbeque and beers.  Sarah went to bed at 7 after a dinner of vegemite on toast, which Pete made as she couldn’t stand up long enough to cook for herself and couldn’t stomach the idea of anything more complicated.

She slept soundly through the night and woke at 5:30 to her alarm.  She felt like her brain was stuffed with cotton wool.  Her limbs were weak and shaky, her head still hurt and the room was still not staying where it was supposed to.  It was a struggle to get out of bed and through her morning routine but she pushed herself.  It was too late to call in sick for work she would get in trouble from the ward and she always felt bad having to do it.  She thought she could last until 2pm and then there were 2 rostered days off so she could rest.

It’s been a few days since I posted anything and I have been a bit slack with my writing but am catching up to the daily target

Hope you’re enjoying it!

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?’

In order to satisfy the requirements of both challenges at the same time I have decided to write a partly fictional piece largely based on my own experiences with dysautonomia (with the addition of a few fictional scenarios) altered slightly and explored through a fictional character named Sarah Henderson.  I hope to have enough words and time to add in the Camino along with all the other stuff so fingers crossed.  The idea is that the piece that is produced from this month of writing is not perfect which is why it is possible to produce it in a month – no going over and editing, no reading and re-reading parts and no writers block because it doesn’t matter how good (or bad) it is in the end, only the final word count matters!

In the spirit of writing from personal experience with dysautonomia the first excerpt of my story is about what it feels like (for me) to faint from postural hypotension (aka vasovagal syncope) and an interesting visit to the doctor.

She felt like a robot that was being powered down from the head first.  Dizziness and nausea swept over her accompanied by a hot prickly feeling as she felt the blood quickly draining from her head down to her lower limbs.  Her body began to feel heavy, so heavy it took all her strength of will to remain upright, and movement of any kind was out of the question.  Her arms and legs were too heavy to move anyway and she lacked the strength to even twitch a finger.  Her world started to shrink in on itself; blackness crowding her vision from the periphery until all that was left was a central tunnel of light.  She tried to speak but even that was beyond her.  Finally her knees gave way, she still had enough measure of control to ensure she did not harm herself as she fell to the ground and used all her strength to lie flat.  The blackness closed in as her body shut down and her sight disappeared completely.  The last thing to go was her hearing, she heard him call her name before sound was completely blanked out by the rushing noise in her ears and she finally fell into the darkness.

This whole episode took no more than a few seconds yet felt like a lifetime.  Her hearing returned first, his calm, reassuring voice murmuring words her brain could not yet understand.  Someone had elevated her feet onto a pillow.  She tried to speak but lacked the capacity for more than a wordless groan.  She felt like she had been wrapped in cotton wool.  Slowly her faculties returned in the reverse order from which they had left.  Hearing and comprehension first, followed by speech, and finally movement.  Slowly, so slowly that she felt like she was moving through quicksand she was able to move her arms and legs, to sit up with his assistance and drink the glass of water he offered.  Her arms were so weak she could hardly hold the glass but she managed through sheer determination.
‘I might just sit here for a minute’ she told him, ‘besides; I don’t really think standing is such a good idea right now.  Can’t believe I missed the couch, I never seem to fall where I want to!’
‘So what do you think it was?’ he asked concernedly ‘did you not have enough to drink today?  Not enough sleep?  Did you stand up too quickly?’
‘I dunno Peter, it could have been any or all of those things’ she sighed ‘I wish I had some answers but at the moment I have no idea, nobody seems to know why this keeps happening to me’
‘Well what did the doctor say last time you saw him?  I mean honestly Sarah, people don’t just faint and feel exhausted and dizzy all the time for no reason.’
‘I told you, I’m seeing the GP tomorrow, it’s a different guy cause Dr Caldwell was booked up but hopefully he can give me some ideas about what’s going on now and a medical certificate so I can reduce my hours at work.  Work are making me see the counsellor on Thursday for some reason, dunno what they think she can do for me!  Can you help me up please?  The floor is kinda hard.’  He helped her to the couch and she curled up on her side on the soft cushions.  ‘I hope I can get to work on Thursday I’ve missed too many days recently and they’re starting to be less than sympathetic.  Urgh, I wish they could see, I can’t help it!’
‘I know honey, but from their point of view it looks different, when you do get to work you look fine’
‘Yeah but that’s because I go to work, use up all the energy and everything I have and then come home and crash.  I can’t get anything else done!  I don’t have a life outside work and this house.  I hate it Pete, it’s driving me crazy.’
‘Tell me about it’ he replied ‘we never go out anymore.  We used to be fun but now we’re like a boring old couple.  I’d suggest we move into a retirement village next week but we might find the lifestyle a bit too fast-paced.’

‘Sarah Henderson, here to see Doctor Harman’ Sarah said to the girl behind the desk at the doctor’s office.
‘Sure thing miss Henderson’ the girl replied brightly ‘Have you seen Dr Harman before?’
‘No, I usually see Dr Caldwell but he’s booked out at the moment and I needed a last minute appointment’
‘Ah ok then, Dr Harman is just with a patient at the moment but should be about 5 minutes – he’s not very busy today.  Take a seat please’.  Sarah sat on a spare seat in the waiting room and looked around at her fellow occupants.  There was a mother with her young son, another mother with an infant in a pram, an elderly man with a walking stick and a pair of elderly women chatting away in the centre of the room.
‘Well I always see Dr Caldwell, she’s a lovely lass, I wont see anyone else.  I know she’s always running a bit behind but bless her she’s always so charming and helpful.’ One of the ladies was saying.
‘Same with Dr Norris’ the other replied.  ‘I’ve been seeing him since he started here.  He’s always running behind too, the dear, but he’s always up for a bit of a chat and always listens to what I have to say.  It’s worth it when you find a good one’.  Sarah smiled to herself and wondered what Dr Harman would be like.

She didn’t have to wait long.
‘Sarah Henderson’ a voice said.  She looked up to see a middle-aged man with brown hair and a moustache.  He was average height and build, not skinny or overweight.  He smiled at her and shook her hand with a firm, reassuring grasp.
‘Come this way please’ he said and led her to his room.

He sat down behind the desk and opened her rather sizeable medical file.
‘Now Sarah, what can I do for you today?’ he asked, folding his hands together and using them to support his chin
‘I need a medical certificate for work, I have to cut my hours down and to do that my work requires medical support’
‘You usually see Dr Caldwell is that correct?’
‘Yes I do, but he’s booked up and I needed this as soon as possible for work’
‘Of course’ he replied, looking over his hands ‘now, I’ve been looking over your file, I do that for all my new patients, would you like to tell me in your own words what has been going on for you.’

Sarah took a deep breath and began.  She went over all her medical history from the recurrent infections she experienced as a child to the acute viral illness that lead to the development of her current ongoing symptoms and eventual diagnosis of Chronic Fatigue Syndrome.  He nodded and smiled throughout, prompting and asking questions at appropriate intervals.  She felt reassured that he was listening and when she finished she waited for him to say something profound.  What he did say was not quite what she expected.

‘Now Sarah I feel it is only fair to warn you that I believe in evidence based practice and as such do not believe in Chronic Fatigue Syndrome.  I believe saying someone has CFS is like putting them in the ‘too hard basket’, there has to be a simple explanation for all of it, an underlying medical or psychological condition or some such but up till now there is insufficient evidence to support that this condition really does exist as many health professionals think it does’.  Sarah’s heart sank.  She hardly heard anything he said past ‘do not believe in Chronic Fatigue Syndrome’ and she knew she would be lucky to get what she needed from him.  She was stunned and furious.
‘But I’ve had it for nearly 7 years now, I’ve had so many different tests that have shown nothing.  I was diagnosed by a Chronic Fatigue specialist – what do you believe is going on if all of that is incorrect?’
‘I can’t say right now, but usually these things rectify themselves after time, after the underlying medical condition has resolved.  Now what was it you were saying about your blood pressure?  It’s a bit high is it? Well that can be expected with the anxiety you are no doubt experiencing as a result of all this…’
‘No!’ she interjected sharply ‘it is low, too low, and I sometimes get dizzy and faint when I stand up’ his eyebrows rose in surprise.
‘Ah ok then, that is also common in persistent infection.  You are a nurse so you know some of the physiological responses the body has to disease, can you tell me what you think is going on?’
‘Um,’ Sarah thought for a second.  ‘My body is so busy fighting the infection or whatever that is forgets about my blood pressure, there’s too much for it to do’
‘Exactly’ he agreed cheerfully ‘now lets check this blood pressure of yours’.

He checked her blood pressure sitting and then standing.
‘You do have a bit of a postural drop, it goes from 110/70 to 85/55 but that’s quite normal in someone with an infection, a quite normal response for someone who is unwell so nothing to worry about.  Your heart rate rose a bit too from 85 -120bpm but that is also completely normal as the heart rate rises to increase blood pressure ’.  She looked at him incredulously but said nothing.  At work when one of the patients had a blood pressure below 90 that was cause for alarm and often resulted in a medical emergency being called if they showed any ill effects from it like fainting or had other complications at the same time.  And a rise in heart rate from 85-120 just on standing up was not normal.  She decided to say nothing and get out of there as soon as possible so she could make an appointment to see Dr Caldwell even if she had to wait a month.

‘Sarah, I’ll give you your medical certificate for work.  These are my own stock certificates, not the clinic’s, I have done the wording myself.  Good luck and if you ever need anything, even just a friendly ear, my books are always open.’
‘Thank you Dr Harman’ she replied, shaking the man’s hand again, even though she felt nothing but revulsion, and walked out.
The next appointment Dr Caldwell had available was in two weeks, hopefully she could hold out till then.

As Sarah waited for the bus she remembered the letter in her handbag and, out of curiosity, took it out to read it.  It ran;

To whom it may concern,
__Sarah Henderson__  has described a medical condition which he/she states makes him/her unfit to work during the period of __/__/__ to __/__/__

Dr Anthony Harman

‘Bastard’, Sarah spat disgustedly and crumpled the letter up into her bag.

Hope you enjoyed the first instalment!!