Across the Ditch

Most of you know that this blog came about because I enrolled in an online course last year.  I thought it was a writing course, but it turned out to be much more.  I had been getting progressively sicker when my wonderful cousin-friend across the ditch, asked me if I would do some writing for her business blog. I was so grateful to have a thing to focus on, a job to do at my own pace… but really nervous that my writing wouldn’t be up to snuff. So I enrolled in a course for bloggers, seeking clarification on what good blog writing looked like.  Turned out that to get the most out of the course, I’d need to create a blog.  So I did.

The course I chose was run by a really ace person in Melbourne. I say ‘ace’ because that is what they say, across the ditch*.  Retro is big over there I think, even when it comes to words!  Our New Zealand equivalent from the same era is ‘choice’. Pip Lincolne is a really choice person, she is big hearted.  And her course goes WAY beyond the craft of blogging.  The community she has created is warm and supportive.  It has given me new friends, new creative inspiration, new hope and even new opportunities.  Among the many great bloggers I have met through her alumni community are the two women I have linked to below. Lila and Carly both blog with complete transparency.  They facilitate significant communities themselves and neither is afraid to tackle the big issues. Which brings me to the purpose of today’s post.

Just lately, across the ditch, there have been some terribly distressing revelations about big name health bloggers.  You might have heard about the very sad case of Jess Ainscough who recently lost her battle with cancer, despite claiming, and (mis)leading many others to believe, that she could heal herself through diet.  And then, the mysterious case of multi-award winning social media darling, Belle Gibson, who claimed to be healing herself of cancers she may never have actually had. The story continues to unfold as thousands of her followers peel off in the shock of the allegations of additional charity fraud.  Belle herself has disappeared.

Both Lila and Carly felt strongly enough about the recent events to write about them.  And what they wrote inspired me to also say something here.  As another ‘health’ blogger, I have always felt that is important to be clear with my readers about the information I provide. You’ll find paragraphs peppered through my writing, reminding you that every person with Dysautonomia is different.  You’ll have heard me urge you to seek the advice of your own medical professionals. But I am also aware that most of the progress I have made with medication and treatment, has come about because like you, I am a reader of information. I have spent years searching for the piece of the puzzle that might help. I found my piece, and I recognise that sometimes it can just be a sentence, somewhere, that mentions that one word you might need to send you searching on a new tangent.  I sincerely hope you are able to find your puzzle piece. I hope that if the piece you need is a similar shape to mine, you’ll find easy to understand words all about it, right here. If not, keep on looking, keep on seeking. And most importantly, keep on verifying what you read.

The only thing that I am expert on is my own journey through chronic illness.  If you also have a chronic illness, it will be different to my journey. Much of what occurs for me might be irrelevant to you. What I hope will be very relevant is less the treatment pathway I have taken or the specifics of my medical history, but rather, the attitudes and values I bring to this blog.  The things I have in common with every one of you, sick or not. The things that make us connect and understand each other.  The human experience.

I am so grateful to have this blog.  To be getting to know the people who are kind enough to stop and read it. To be building a community over on facebook.  So, in the spirit of Carly’s Health Blogger’s Pledge:

I promise to always write with authenticity.

I promise to use my words carefully.

I promise to carry the responsibility of writing for my community with integrity.

I promise to continue to share in ways that are helpful, hopeful and honest.

It’s a real privilege to receive feedback from you about how the words I share have helped you.  It never fails to surprise and delight me that what I am doing has a purpose and can help. It feels better than any job I have ever done, to lend my support, my thoughts, my words to people who want to read them. Wowsers!
(I’m really getting into the retro ‘wordage’ now!)

I hope it continues to be that way for those of you who have found me here and discovered a kindred spirit. I love to blog. I love blogging about and for people with chronic illness, invisible illness and differing ability. You are very cool, very resilient people. I love blogging about motherhood, womanhood, and every other thing that occurs to me and gets my fingers tapping. It’s been a diverse spread so far. I love connecting with you and your own ideas about life.  Thanks for meeting me here.  I promise I will always be authentically me, in all my honest, oversharing, emotional and verbose ways.

Isn’t it all about that?  When I share my heart and my hopes with you, there is something in you that feels the same way. Something that makes you think ‘me too!’ and in that recognition; there, that is the magic that keeps me blogging.

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*’Across the ditch’ is a friendly expression used between Australians and New Zealanders, it describes where the other country is in relation to our own.  It works both ways. Our ‘ditch’ is the Tasman Sea.

 

Tasman_Sea
Source: Wikipedia

 

 

31 Days of Dysautonomia Awareness

October is(5)

Today is the last day of Dysautonomia Awareness Month for this year.
Wordpress thinks it is still yesterday, because they aren’t based in New Zealand.  But down here, the sun has been up on the last day of October for some time.  It’s already looking like a beautiful day.

It’s been a really huge month for me.  My first as a Dysautonomia Blogger. I appreciate anew the efforts that health activists go to all over the world to raise awareness and funds for rare diseases.

For any diseases.

And I am really, really tired.

So today I am not doing any big wrap up.  There won’t be blue fireworks and streamers and fanfare. I’m just going to thank you.  For noticing the things I posted, for taking time to discuss it with me, for reading the blog (!) and ‘liking’ all the awareness posts on the facebook page. For those of you who dressed stylishly in blue for Dysautonomia Awareness (Zoe! for instagramming her blue fashions #dysautonomiaawareness), who posted blue pictures for the #dysautonomiaawareness instagram campaign.  For Kylie, who made my hair such a pretty blue and Sarah, who spread the word on the business page of the Salon.  For Michelle, who shared my picture and poem in her blog series “Exploring Dysautonomia through the Arts”.  For Andrea and the editorial folk at Attitude Live, for the opportunity to get the Dysautonomia word out into the media. For all the blue nails around the place (especially, thanks to Zed who went ‘thumbs up for Dysautonomia’ even though in his seven-year-old world, nail polish is “for girls”). For my sister Tristen, who created awareness bracelets with me.  For Anya Bykar and Bea Chuan who donated bespoke jewellery items for the cause. For the girls who heard my plea and donated to the research fund.  Thank you.

Thank you.

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