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.