Friday, 25 October 2013

Claire: My Mum - the importance of family and friends. Dysautonomia Awareness Month.

Claire is back today to discuss the importance family can play when you are dealing with a chronic illness like Dysautonomia. As the previous guest posts this month from family members have shown, illness doesn't just affect the one who's ill but the whole family. In turn for many of us we couldn't do it without the support from those nearest and dearest to us. (Special shout out to Claire who is competing in the Miss Camperdown Cruise this weekend. Good Luck, Claire!)


Age 29, Single with 3 fur kids (2 dogs, 1 bunny), nurse in previous life – currently volunteering in event first aid and dabbling in Millinery
Became ill in 2010/2011 but ill on and off for most of my life.
Diagnosis – Neurocardiogenic Syncope with Tachycardia, OI, Elhers Danlos Syndrome, chronic sinusitis, Endometriosis, asthma

Dysautonomia is a very isolating illness. Many of us had very active social lives before we got sick. Most of us were working or studying, some were playing regular sport or participating in other regular social activities. We enjoyed visiting friends and family, going shopping, going on holidays and doing whatever we felt like doing. Cue dysautonomia and it all vanishes, oh so cruelly, before our eyes. Friendships fade, family gets ignored (not on purpose), classes are missed or dropped and our physical capabilities make most sport an impossible dream.

In my belief, there are two reasons why Dysautonomia is called an invisible illness; firstly the usual meaning – there are often no outward signs of illness (we don’t look sick), but I would like to propose a second meaning – it is an invisible illness because we become invisible. We vanish from the scenes we were once part of, we drop off the map because staying there involves a huge amount of effort and stamina that we lack – we get forgotten about or overlooked. We’re all still here though, somewhere on the sidelines (often on Facebook), we’re still essentially the same person we were before we got sick, we still enjoy and appreciate the same things, we just have physical limitations now that we didn’t have before. So because of these limitations we become invisible, isolated. And because it is so isolating the importance of friends and family, care, support, persistence and understanding simply cannot be overstated - so this post is actually about my mum.

My mum is amazing. She is the second most amazing, inspiring, strong, determined woman I have ever met (after her mother, who just beat her at the determination stakes). My mum is a GP, an excellent GP, so her patients have been telling me for years and she is partly responsible for my finally getting a diagnosis. She is also a World Champion Dragon Boater, just throwing that in there!

So as you may expect, knowing all this, that she is amazingly supportive, helpful and understanding of my illness the majority of the time. It can be very hard to completely understand just what living with a chronic illness it is like if you’ve never had one but you know what? We don’t expect everyone to ‘get it’! Just making the effort to understand is more appreciated than you could know - and she tries her hardest to understand.

She has helped me in every way imaginable over the course of my illness and my long run of poor health that came before it and I can honestly say I would not be where I am without her – for starters I’d probably be living on the streets because the Disability Support Pension is embarrassingly inadequate.

Things like illness test relationships. They test people. They test faith, love, strength and character. But they are so much harder to face alone. It is said that the true test of a friendship is whether it endures the hard times as well as the good, which sucks because the hard times are when you need friends the most.

Everyone should have someone like my mum in their life, she’s awesome! But you can’t have her, she’s mine.
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For those unfamiliar, a short explanation of Dysautonomia can be found here.
One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.
Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

And because Claire's mum likes Savage Garden, I give you Affirmation. Nice choice Claire.

3 comments:

  1. Claire, I really like your thoughtful response to the 'invisibility' of dysautonomia. And I am so glad you have your Mum. I was also blessed with an awesome Mum, but she passed away seven years ago. I miss her everyday and I completely agree that everyone needs a mum like yours (and mine!) in their life. Mothers are the Universe's best concept and those of us who have been blessed with great ones know how very fortunate we are. Here's to great Mums! -Rach in NZ

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  2. Claire, can you clone your mum, especially as she is a GP and they should All be like her, and everyone should have a mum like her! Also, sorry, but despite the heat and the lonnnng flight i'm moving over there, even if you don't want me. What wonderful people inhabit your fine continent - AND Savage Garden (so sad when they broke up :..>[ ) Affirmation, fan bloody tastic! Warm regards to you all x Tricia

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  3. Ps: "I believe the struggle for financial freedom is unfair, I believe only one to disagree is 'Tony Blair' ;>)))

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx