50k for awareness

The 12-18 of September was invisible awareness week 2011, the week when we’re officially allowed to make a fuss about all the crap that has been happening with our bodies and help educate people about invisible illnesses and the impact they have.  So where was I after my last post about the burden of illness on society and the individual? um, I was reading a book.  Actually it was a trilogy and it was pretty darn good.  Ok, to be honest it was more than that – it was EPIC!

There’s two reasons why I don’t read much these days; one is that when you have difficulty concentrating it can be a little bit frustrating when you find you’ve read the same sentence 5 times and still don’t know what it said.  The other reason is because I quite enjoy sleep, in fact I really need it to keep my body going and a really good book gets in the way of that.  I don’t just read books, I devour them, I live them.  I would breathe fantasy if I could.  If someone said to me; ‘Claire, you can go to Narnia or any other fantasy place 20 times but each time you will loose either a finger or a toe’ it is more than likely that I would go at least 15 times – so long as my right hand is fine and I can write (and wield the necessary sword or whatever you need in any fantasy world) I’ll survive!

As a child I lived in books.  I often didn’t have much choice; asthma, chronic sinusitis and then depression took that choice from me.  But I didn’t mind so much, the fantasy world was so much more exciting than the real one.  I wanted so badly for it to be true that for a while I used to go into my wardrobe at night just incase it suddenly became magical and transported me to Narnia.  It never did.  But I survived, I read more and more and I loved it.  I was reading at a grade 6 level in grade 2, I guess that’s what happens when you don’t have much else to do!  Sadly in year 11 I came to the conclusion that if I wanted to pass my subjects I would have to stop reading and start studying.

More recently, movies have often replaced books due to chronic fatigue and dysautonomia getting in the way of my brain function but every now and then I still get hooked.  I deliberately aim for ‘light reading’ because those books are easier to put down but the odd ‘unputdownable’ book still gets through and I have always had a problem with series – once I start one I have to finish, I even persevered with Robert Jordan’s ‘Wheel of time’ series when many before me gave up in frustration and disgust at his appalling writing.  Just because your wife is a publisher doesn’t mean you should get away with that kind of writing, still, the story was great if you could get past that!  Anyway I digress; This time it was ‘the night angel’ trilogy by Brent Weeks.  I did pretty much nothing for just over a week other than read these books.  They have been added to my list of favourites alongside George R R Martin’s ‘Song of Ice and Fire’, Stephen Donaldson’s ‘Mordant’s Need’ and Cecelia Dart-Thornton’s ‘Bitterbynde chronicles’.  It has it all; magic, destiny, assassins, Gods, kings, monsters, passion, fear, ambition, loyalty, friendship, sorrow and a good measure of sword fighting and treachery.

So while I was reading my books others with dysautonomia were out there raising awareness doing radio interviews (here’s a good one by a POTSy friend of mine), writing blog posts and generally getting the word out.  But it’s ok, I can still contribute!  How (you may well ask)?  Well, as it happens November is Nanowrimo (aka National November Writing Month) where the challenge is set for anyone who believes they can to write a 50 000 word work of fiction between November 1 and November 30.  So a group of people with dysautonomia of varying types have decided that we have plenty to write about that is non-fiction and that invisible illness really needs more than a week to be talked about so when the idea for 50k for awareness was suggested we jumped at the chance.  What an adventure!  Boy are we going to be busy.  The big question is, how do you start a work like that?  Oh wait, I have it;

Once upon a time…

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The burden of illness on society and the individual

Chronic diseases are becoming more prevalent in humanity today as we are living longer due to advances in medical science and care.  A chronic illness or disease is defined as one that is long-lasting or recurrent and its impact can range from minimal to severe.  According to studies conducted by the University of Canberra;  Chronic disease accounts for 2/3 of Australia’s healthcare spending and there are an estimated 3 Million Australians living with a chronic medical condition today.  Unfortunately it is virtually impossible to estimate the cost burden of chronic disease on society or the individual but I’m going to try and put it in a bit more perspective…

I am currently unemployed and have been since December 2010.  Unfortunately my health is not predictable enough at the moment for me to return to regular hours or shift work.  I have possibly picked one of the worst jobs to do with unpredictable health – I am a nurse.  I have a huge amount of responsibility placed on my shoulders at work and if I can not think clearly I could make mistakes and I am not about to test that!  Not to mention the days I can’t get off the couch for more than 5 minutes without feeling dizzy or can’t drive further than the end of the street.  So because of that I feel it is my duty, not only to myself and the stress it could place on my body while it is in a vulnerable state, but to my potential patients and colleagues not to work for the time being.  I don’t plan on this state lasting much longer but then again I felt the same way in January, February, March and every month up until now.

I am a regular centrelink customer.  I have received support from them every year since I became ill in 2004 apart from 2010 when I was able to have a full time job for 6 months then cut down to part time when I became unwell again.  I am currently on Newstart allowance which is $480.80 per fortnight and includes a $6 pharmaceutical allowance because I am on Newstart with a medical certificate.  Unfortunately my pharmaceutical bills far exceed the paltry allowance.  As a low income earner I am eligible for a health care card which reduces the costs of my prescription medications if they are on the PBS, it also partly reduces the costs of some of my medical and physiotherapy bills but not by much.

Out of interest I calculated my fortnightly pharmaceutical bill, it is $143.73 and that’s for my regular medication
Then on top of that there’s health insurance, which I would be stuffed without, and that is around $50 per fortnight paid quarterly
Then there’s the normal everyday stuff like petrol, food, clothing, gym membership, personal trainer and occasional social outing
On top of all that are the medical bills that vary from month to month depending on whether I am recovering from an injury and need regular physiotherapy or just specialist bills and tests
Then there are the many once-off or annual costs like car registration, ambulance cover, birthday and christmas presents, medical alert bracelet and membership, nursing registration (thankfully my training is in a volunteer capacity so I don’t have to pay to keep up my CPD points), union fees etc

There is no short term or intermediate disability allowance.  As far as centrelink are concerned you are either unable to work at all and expected to stay that way for at least 2 years or you go on Newstart and require 3-monthly medical certificates and a significant amount of harassing.  BUT I am hoping to go back to study next year which would make me ineligible for both the Disability Support pension and Newstart and put me on Austudy which is less than Newstart – do they expect me to be able to work and undertake full time study when it is likely I will only be working part time for a few months before I start?  I don’t expect my illness to continue at this level forever but it is likely that it will take several more years to completely recover – if I ever do.  No wonder I still live at home!

Don’t get me wrong, it is helpful to be getting anything at all but I am 27 and far from financially independent and could not be on the allowance I receive.  If it wasn’t for my mum I wouldn’t survive and I do all I can to help out when I can but it isn’t exactly an ideal situation.  Basically what I want is to be well and working full time but as that is not likely to completely happen for a while I have to make do with what I have.  But if what I am getting barely covers the costs imagine what it is like for people who don’t have amazing mums or anyone else to help them out and have costs associated with their disability that exceed mine.

There are a lot of people out there who can’t work and want to, who want to be useful and respected members of society, who have expenses associated with their care that they can’t meet, who struggle every day – they deserve more and better.  I wonder if there are figures available for all that; how many disabled people work, how many can’t and would like to, how much they get in support every year, how much it costs them to care for themselves.  According to Social Policy Research Centre’s 2006 paper on ‘the costs of disability and the incidence of poverty’; The 1999 Household expenditure survey shows that in a household where there is disability there is more likely to also be hardship and poverty.  The paper also came to the conclusion that it was very difficult to estimate the average cost of disability to an individual due to the diverse nature of disability.  What annoys me the most is that there are people out there who can work and don’t, who can’t be bothered, who use and abuse the system and are a complete waste of space and money – they don’t deserve the support.  Isn’t it time something was done about that?

And no, I’m not talking about forcing people back into work or punishing them if they can’t find work, that’s completely different.  Paying more for education would be a good start, we want people to be educated so they can have a better life, right?  So why do the government pay more to people looking for work than people working towards work?  According to the 2010 Household Expenditure Survey “Recipients of disability and carer payments, unemployment and study payments, and family support payments, were much more likely than the population as a whole to be in the bottom two wealth quintiles” were they surprised to find that?  Minimum wage in Australia is $15.51 per hour, $589.30 per week for people who aren’t trainees, apprentices and juniors – Newstart allowance is nearly twice what youth allowance is and that is already below minimum wage.  If a government pension is the main source of income and most of them fall way below minimum wage, why should it come as a shock that people receiving benefits are often living below the poverty line – particularly those who have significant costs associated with daily living like those with a disability, people raising a child on little to no income or people who are studying.  Study leaves very little time to earn money but afterwards, when your degree or apprenticeship or whatever is over and you can join the workforce with your qualification and the pay is usually better than if you had just started from school.  Then these people pay more for tax so the government gets more back in the end anyway, so wouldn’t it be more beneficial to increase benefits to the people who really need them and those who can give back more to the economy in the future? isn’t that called ‘investing in the future’?!  Makes sense to me…

How to make friends and influence POTSy’s

Last weekend I met a group of girls from the POTS and Dysautonomia Australia FB group I joined a few months ago.  It can be quite difficult to organise things when people come from all over Australia and it can be hard to commit to attending things when you have such an unpredictable medical condition.  There were 5 of us in total, we met for lunch and had a great time.

It was really nice to be able to talk about all those things specific to dysautonomia that most people don’t quite understand.  We swapped amusing (and not so amusing) stories of fainting episodes, talked about how dysautonomia had changed our lives and what we were doing with our lives now and how so little is known about our group of medical conditions.  We compared our lists of diagnoses (I was the only one with NCS not POTS) and found a lot of things that overlapped – we also discussed medical alert bracelets.  We talked about symptoms and how we manage symptoms; compression stockings, electrolyte replacement etc and compared our heart rate monitors (most with chest straps, mine is just a touch-activated watch so doesn’t monitor constantly).  We talked about all our different medications and compared our pill boxes that ranged in size and design from a sexy compact compartmentalised one with a mirror in it to my little round container with the scallop shell that I bought in a silver shop on a street in Santiago after completing the Camino.

We discussed how wonderful it was to actually have a diagnosis (It seems the average wait was 18 months – I take myself out of the average as 7 years kinda throws it out a bit) and how it all finally made sense when we did – it’s all due to a lack of oxygen to my brain and body!  I can’t help it if I get tired easily, can’t remember stuff and get confused and can’t find the right word sometimes!  We talked about travel – aeroplanes can be quite bad for us.  We talked about plans and dreams for the future.  We also discussed diet and exercise (it’s hard to maintain your weight on some medications and if you can’t do much in the way of regular exercise) and found out that a lot of the weight loss meal plans are very bad for people with dysautonomia as they do not contain nearly enough salt etc.  We talked a lot about specialists (mainly cardiologists), useless doctors and people who had made us feel useless, worse or pathetic by their lack of understanding and sympathy and of course the angels in our lives (mums generally great, brothers often not so much but surprising on occasion).

When I told my mum what we had talked about afterwards she said ‘oh dear’ in her ‘I’m not entirely sure if that’s healthy’ voice but you know what, it was great!  They’re such a positive and strong bunch of women and it was fantastic to finally have people to talk to who know what it’s like from personal experience.  Not a specialist, not a friend of someone who has it or knows someone distantly who does – actual, real people!  We could talk about it freely without the fear that people present would find our discussion boring or feel like we were complaining and one of the best parts was when someone asked if anyone else experienced a random symptom and someone else did.  I have had (for the last 7 years) flushing on one side of my face only.  Completely randomly just one cheek or ear will get really hot and the rest of my face will be normal temperature.  I had never heard of anyone having that and last weekend I discovered that I am not the only one!  I do not in fact have strange alien creatures that have taken over my body, I am human and I am not alone!

So all in all it was a very positive experience and at the end when we were leaving we realised there had been so much to talk about that nobody remembered to take photos!  I hope we can all get together again soon and that those of us working on the Dysautonomia Australia an New Zealand (DANZ) website can get that up and complete soon so there’s more information out there for people who need it.

Just keep swimming

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

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

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

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

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

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

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

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

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

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

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

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

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