There has been outrage of late among the Australian community, reflected in the blog world as well, about the ill treatment of Australian cattle in Indonesian abattoirs.  While I certainly don’t condone the torture of animals, I am struck by the silence and lack of similar passion around the inhumane living conditions of our fellow human beings.  In case you haven’t been following the news, there is a food shortage and the Horn of Africa – Djibouti, Ethiopia, Somalia and Kenya -  is experiencing  what is being described as the worst humanitarian disaster in the world.  Millions of Somalians are facing starvation and are fleeing to the Dadaab refugee camp in Kenya, now the largest in the world.  Many children and infants arrive  in time to die.  Maybe I’ve missed it, but I haven’t heard outraged Australians flooding radio call lines about this tragedy.  In fact, I don’t hear people talking about it at all.  Maybe I just don’t get out enough.

I usually make a point of averting my eyes from images such as the one below.  I know it happens but I don’t want to see.  It’s just too much.  But sometimes we need to look.  Face the reality.  Be shocked.  Think.  Be aware.  Do something?

photo – able2know.org

You can click on the following organisations to read about how they are responding to this crisis.

Australian Red Cross

Care

Oxfam

Refugee Council of Australia

Unicef Australia

I  didn’t even know, until I read it on a blog yesterday, and I have ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome).  I’m not actively engaged in the world of CFS, I don’t (want to) identify with a sick community, it’s too confronting, too scary.  Maybe I’m just not sick enough, or brave enough.  I know I’m luckier than many, but the thought that I could get worse is unthinkable. I try to keep CFS part of my world, not my world, and it’s a slippery slope.  In fact, sometimes I think I’ve got it all wrong. I may be too good at ‘doing’ well and then wonder why people don’t understand.  How could they?  At other times I can’t find the words to describe  the overwhelming, all encompassing crushing fatigue – the crash*  – because they don’t exist.  I also know that when I have sought help, support and understanding I have too often met dismissal, doubt or scepticism.

John Falk, columnist for The Huffington Post, recently wrote about his CFS in  Chronic Fatigue Syndrome and Psychotherapy:

“When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it’s all in your head; that is, those that don’t live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It’s the reason I have refused up until now to identify myself as a person with CFS.”

“I’ve now decided to come out of the closest — so to speak — because it’s ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it — and there are many more who have it than let on — the better off we’ll all be in the end.”

When I read those words my heart aches.  That people living with a debilitating illness need to ‘fess up to having it’,  to come out of the closet.  He’s right of course, but why the need to be in the closet in the first place?

This gets me back to International ME/CFS Awareness Week.  You can help relieve the burden of those living with this illness by just learning more about it at ME/CFS Australia.

* As previously posted, my definition of the common CFS term  ‘crashed’ is: I’ve had too much fun/tried to be normal/overdone it/ expended my energy/burnt out and have fallen into bed/a black hole/hell.

What to do about loud, hard partying neighbours? Please advise, I’m going ‘round the bend. These are people who often party all night and well into the next day, which is very annoying because there’s no point in mowing the lawn or getting at the teenager’s drum kit at 6.00am or even 11.00am. They wouldn’t notice. I have been doing my best to be Buddhist about the whole thing, trying to find peace and quiet within – but at three o’clock this morning I was glad/sad that there were no weapons of mass destruction in the house. I would have used them.

I like to think I’m fairly well adjusted to life with CFS – it’s been ten years and more.  I know life’s not perfect, or fair, but just is.  However, while enjoying my neighbour’s ten month old baby recently, I began to think (not for the first time) about being a grandmother. Not that I am, but if I ever were to be …  And I felt sad, because I know that I can’t be the grandmother that I would want to be, that I ‘should be’, the grandmother that my children had.  And it got me thinking that what’s most difficult for me to accept about living with CFS is that I can’t be the ‘me’ that I really am – for myself and others.  I feel sorry that I’m not the mother, partner, daughter, sister, aunt, friend, neighbour that I want to be – could be – should be – but can’t be.   But am, inside.

What’s knitting got to do with it?  Everything.  One of the few things I can do at times when I can’t do much else, is knit.  It’s a lifesaver.

Greg Melander via French by Design

Here’s how: The Australian Red Cross Japan and Pacific Disaster Appeal 2011

My heart goes out to our New Zealand neighbours.

For those of you who haven’t read the ‘about me’ section or read all my posts (why not?), my last posting may have been a little out of the blue.  While it’s not something I choose to dwell on, Chronic Fatigue Syndrome (CFS) is an inescapable and major part of my life.  A part of my life that at times I need to share.  That  I want to share.  I feel it’s important to talk about this invisible illness that is difficult to explain, and for others to understand, but is nevertheless very – very real.   And while My Pink Door is about finding the joy, about the things that make me smile, it’s also about being true. 

And on that note …  I’m off to bed with the latest Inside Out!

,

Just when you sort of forget

become complacent

feel ‘normal’

aim too high

have too much fun

laugh too loud

jump for joy …

It cuts you off at the knees

cripples

takes you unawares

pulls out the rug

puts you in your place

Remember me? it says

Remember who really runs the show?

Bastard CFS

I’ve ‘crashed’  here at My Pink Door, not surprising, so things might be a little quiet for a few days.  Damn, tricked again, I almost felt invincible.   Can’t complain, I’ve had a great couple of weeks!