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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