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26.4.10

Warrior Women

It has been a long while since I wrote here and it will probably take the next few postings to elaborate on that. Part of me has been wanting to hide the fact that I have CFIDS; partly, I have been been so close to the edges of my envelope, that I dropped this by the wayside.

The good news is that this year has been the longest consistent period of better health in nearly 3 years. I have a new part-time job and some of my symptoms have abated dramatically. Extreme dizziness, word jumbling and muscle pains have remained loyal but I still am amazed at my overall improvement, despite bereavement, travel and work this year. I will attribute it in large part to Sarah Cabots 8 week Liver Cleanse plan and a REDUCTION in exercise. More on this soon (I still firmly believe in graded and gentle exercise).

I also recently went to a CFS support group in St Kilda and remembered how important it is to write our blogs in a community with so little recognition. Our voice must be louder. I recently watched a film ' I remember me' that emphasised the statistic that more women are suffering from CFIDS than Breast Cancer, but let's compare the funding...men have a vested interest in protecting our breasts. It also revealed how one research department managed to divert $13 million USD of funding - allocated to CFIDS - to other areas.

Hopefully, interesting debates will ensue from future posts as of course many, many men suffer from whatever this illness is. In my experience however,  there are significantly more women with CFIDS (some statistics say 75%). Why is this? Are more men suffering in silence because of the stigma attached? Does a grumpy man with chronic pains blend in more comfortably and subtly than a woman, especially if he is older? Or are there really just a lot more women with CFIDS?

In the meantime, here is a poem I stumbled across by Maria Jastrzebska for women AND men, battling in bed today:

Lying propped up
on a large cushion
in my woolly pink
dressing gown
is probably not
how you imagined her.

To be honest
I didn't either.
I rather fancied myself
dancing over hilltops
swirling swords in the air
all yells and flying kicks
or even leading
a mass protest rally
at least strutting my stuff
in trendy denim or leather
anything but like this.

Nevertheless
here I am
a warrior woman
in my pink dressing gown
dozing
or staring int space
watching the trees
through my window.
Imperceptibly
at first
ever so slowly
I am fighting back.

With every act of kindness
towards myself
every refusal
to blame
or despise myself
I strike back
against the men
in grey suits
who don't think
I'm cost effective
the ones in white coats
who don't even believe
I exist
all those too busy
or in too much of a hurry
to notice who I am.

From behind
my drooping eyelids
I am watching
with the stillness
of a lizard or snake.

I have learnt
the langour
and stealth
of a tiger
lying in wait
ready to pounce.

So next time
you come across
a woman like me
tired looking
in a pink dressing gown
just because
I'm lying low
don't imagine
I take anything
lying down.
Watch out
I have never been
as slow
or as deadly before.

2 comments:

  1. Hi, Sophie -

    So nice to see you back in the blogworld! And how wonderful that you've been doing better and are able to work part-time. That's great news!!

    No one knows for sure why women are more affected than men, but it's true for all immune system disorders, including all autoimmune diseases. Experts think it might have to do with our different hormone profile.

    You mentioned extreme dizziness. That's caused by Orthostatic Intolerance (OI). Have you tried any treatments for OI? That could help your dizziness and also help you feel better overall - Oi is behind most of the worst CFS symptoms. Maybe you already read this, but just in case, here's a blog post I wrote recently about treating OI:

    http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html

    I hope it helps. Welcome back!

    Sue

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Thanks for your message