Thoughts for Friday

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

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

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

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

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

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


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…

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.

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