The last taboo?

August 19th, 2013 — 11:49am, 5 comments »

visualdiaryblogpost

Last year, or maybe it was the year before, I decided to fine tune my blog a bit.  Never really quite sure how to define it except for being a place that was mine, I thought I should take a more focused approach and only post about design related things.  Which is probably why I haven’t blogged since.  Well, that and the fact that I discovered Instagram.  Not that I don’t love design, and decorating and all things related to interiors, especially if they’re pink or turquoise, but I’m just not very good at compartmentalising.  And now that I remember, one of the reasons I started blogging was to share the joy of the everyday, but also to share the joy that could be found (or not) living a less than perfect life.  In my case, that’s a life with Chronic Fatigue Syndrome.  I wanted to, and felt a responsibility, to occasionally talk about an illness that some people don’t even admit to having.  I know, can you imagine?

While recently watching the excellent Ruby Wax document about mental illness on the ABC,   I was struck by Wax’s comment about mental illness being the last taboo – or something to that effect.  Not so: there’s another and it’s ME/CFS.  And it causes unbearable hardship and pain for the estimated 200,000 people in Australia who have the disease, as well as for those who support them.

From my own experience over the last twelve years and what I read about others, those (of us) with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) here in Australia not only suffer the huge range of debilitating effects of the illness and the loss of a ‘life’, but experience stigma, ignorance, neglect, and disrespect, typified by lack of awareness, support and understanding in the community – from friends and family to medical practitioners.  And this is hard to bear.

A few days ago I got really excited about a documentary I discovered, called The Blue Ribbon, being made by an American journalist Ryan Prior, who also lives with ME/CFS.  The promo is available on line and I weep as I watch it again and again.  Because it gives validation and hope. Prior explains that the overwhelming response to an article he wrote about his experience and thoughts on the illness, the ‘untapped reservoir of pain’ triggered his obligation to do something about this situation because he could. The promo is available at: http://www.youtube.com/watch?v=VSLHT88o0IQ

In 2002, the Royal Australasian College of Physicians (RACP) attributed the prevalence of ME/CFS between 0.2% and 0.7% of the Australian population (RACP, 2002) which is more than 180,000 people. The Centers for Disease Control (CDC) in Atlanta says there are 1 million victims in the United States and 17 million worldwide – See more at: http://www.com/2013/06/a-young-man-a-big-disease-and-a-big-idea/#sthash.La4zWhrC.dpuf and also at http://www.cdc.gov/cfs/general/index.html

For those who would like to know more, and particularly for those who have strong opinions but don’t know the facts, check out the ME/CFS Australia site, http://www.mecfs.org.au/what-is-meorcfs

If this promo lives up to its promise I am hopeful the documentary could change the lives of many people, if only through greater awareness and empathy (not to mention increased funding and research). However if the lack of response to my request on my Facebook page to watch the promo is any indication, then maybe I shouldn’t hold out too much hope.

 

I’m a mummy blogger too

June 16th, 2011 — 5:27pm, 1 comment »

Occasionally I get a little frustrated by the number of blogs, really good blogs, that focus on life with young children.  I’m just not that interested.  I can’t relate.   Don’t get me wrong,  I’m all for mummy bloggers. I’d be one too, but my children have grown up, well almost, and they can read my posts.  I’ve moved on, or rather, life has.

But at times, like today,  these very same blogs touch me deeply.  They take me to a place and a time where my heart was so full.  I want to go back…

Baby number one – an original polaroid shot!

Babies one, two and three …

Number one, aged three years says -  I’m not gonna be goldilocks, I’m just gonna be an ordinary boy.

 
Never…  He always liked a project – from building lego houses to brick ones. Really.  He still does.

 
Number two was a little more cruisy.

A dreamer … Aside from tights, he loved his skinny jeans and high tops.  Still does.

 
Double trouble …

But killer smiles that break my heart.

And then there were three…


Number three loved nothing more than hanging out with his bros, and still does.

He was well trained in the art of marthon television viewing,

sleeping,

and gaming.

Skills he works hard to retain.  They also taught him how to breakdance and snowboard.


 
Number three’s other childhood loves were his dog

and his soccer.

They still are.  He does seem to have lost interest in dance performance with his cousins though.  Such a shame really.  I think he showed talent.  Don’t you?

It’s been a year…

May 27th, 2011 — 7:09pm, 18 comments »

I just realized that today is the first year anniversary of my blog.  I’m impressed, I actually stuck with it.  I’ve  had a love/hate relationship with blogging.  I’ve almost quit many times.  But today I’m really glad I didn’t.  What do I love about blogging?  I think mostly that it’s a form of self expression.  My blog is a creative outlet that allows me to play and is a place where I can distill my thoughts and shape my words.  My place.

But it’s not just my place, it’s a place I share.  Isn’t that what blogging’s about,  communicating and connecting with others?  And that’s what’s special.  But it also means putting yourself out there and I do struggle a bit with that.  Who do I think I am?  Why would others be interested in my life, in what I have to say?  Am I a self – promoting attention seeker?  I hope not, at least not all of the time.  Then at other times I get disheartened because I don’t engage my readers enough.  Well if I had any …  Boy oh boy,  who knew it was going to be this complicated?

However, most of the time it’s a lot of fun and I plan to stick around a bit longer and hope you do too.

I do have a serious dilemma though.  I recently learned that my eldest sons have been chuckling away for the past year about the blog name – My Pink Door.  Apparently, it sounds like the name of a porn site.  I didn’t know…  did you?  I thought it was a great metaphor, but not for that.  They may have ruined it for me.  What to do? Your thoughts on this would be appreciated.

Anyway, now because it is all about me, particularly because it’s my blog’s birthday, I’m going to share some of the joy I’m feeling today at My Pink Door.  And I am not going to feel self conscious one little bit.

To blog or not to blog…

December 24th, 2010 — 7:09am, 2 comments »

Actually, that will have to wait.  It’s Christmas Eve for Pete’s sake.  I’ve got food to buy, presents to wrap, a house to clean (Christmas lunch is at my house!), a turkey to stuff (actually Mum does that), and a bit of re-re-arranging to do.  Note to self – even if it seems an imperative – do not start re-arranging the house two days before Christmas.

I’m just waiting for everyone to wake ’til it’s a reasonable hour, so I can crank up the carols and get this place rockin’.

Hope you do the same and have yourself a very Merry Christmas!

xx

I need to de-brief …

September 24th, 2010 — 12:36pm, 1 comment »

I’m back, I’m on line and I’m not going into the number of conversations I’ve had with broadband technicians in the last few weeks.  How I was told, I don’t know how many times, that the problem (different problem each time, mind you) was fixed.  Actually, I will tell you about this – the piece de resistance – the day I nearly lost my mind.  The day the (first) technician came to the house. (At least I think he was a technician.  I did notice that he wasn’t wearing any form of identification – that was a little odd.)  Anyway, after quite some time poking about, whoever he was explained that the problem had been loose wiring sitting in water in a pit outside the house.  He had dried and reconnected the wiring and was arranging for someone else to come in the next week to drain the pit.  Everything would work perfectly now, he assured me. He waved good bye with a big thumbs up. “Woo hoo” I shouted and skipped gleefully to my office.

You’ve probably guessed that in fact everything was not working perfectly.  In fact, nothing was working – at all.  But wait for it …  When I rang the folks at Bigpond, in tears, they weren’t surprised.  They knew that my internet wasn’t working.  Their notes read that the malfunction was due to my faulty internal equipment.  Excuse me?  “There is nothing wrong with my equipment, what about the water in the pit?” Nothing about that in the notes.  “Yes”, I shouted, “someone’s coming to fix that next week”.  Apparently not.  I still don’t get it and I really wasn’t taking hallucinogenics that week. 

Anyway, seems like the problem wasn’t my equipment, surprise, surprise, but an ‘outage’, at least that’s what the notes say, and ‘it’s fixed’. As long as only one person is on the internet, it turns out, two and we’re in trouble.  So we’re doing shifts, taking it in turns, day by day. And I’m recuperating, gathering my strength, grateful for small mercies.