International ME/CFS/Fibromyalgia Awareness Day

May 12 is International ME/ CFS/ Fibromyalgia Awareness Day. The day was chosen to commemorate the birthday of Florence Nightingale.

Resources and information:

The National Fibromyalgia Association
The CFIDS Association of America
WebMD Fibromyalgia/CFIDS Health Center

Chronic illness has been my enemy for several years. Now I am trying to make friends with it.

The (rather prosaic) poem below was written early in my struggle:

                          Fibromyalgia

I've become the princess I disdained as a child. I'll prove my
royal blood; put twenty mattresses between me and that pea.
My bones will feel its sharp, hard curve, here, at the small
of my back. I am only sick, I am not dying, no faster

than I was before. I want to stretch my muscles across
the cool length of the blue pool. I want to walk four miles a day
in the rainforest, through the cedars, beneath the eagles and herons.
I want to laugh from the middle of my belly so hard my breasts

bounce. I want to throw Clancy's ball one hundred times in a row.
Instead, I consider the purchase of a stylish cane, one with an animal
head to hold in my aching hand. I've become cranky and rude. I eat
off paper plates, drink from plastic glasses. China and silver fade

under dust on the shelves. I want to be back where I was before.
I want to wrap my legs around another body. I want to earn hard
breathing. I want to build my own garden wall, bend to place
seeds in the black earth with my own hand. I want to wake

in the quiet morning glad for the day in front of me and the dreams
behind. I want to lie in the sun all long afternoon, hot and easy and
dazed by good fortune. I want to bicycle down the hill with Elizabeth.
How do others move through this with such grace and good manners?

My days are short as winter solstice, even in summer heat. I have no
desire left, except for sleep, solitude, a feathered bed. No, sorry, I'm
too tired, too many people at parties, too much noise in the streets.
There is no prince. There is no heaven. There is no sleep.

[These long lines look better on Oratory, here.]

Comments

[susanne]

Today has been my first visit to your blog. Your poems are beautiful and moving.... this one especially touched me as I've been living with ME/CFS for 9 years. Thank you for bringing these words to life.

[Erin]

... making friends is hard work. Maybe we could double-date? Take our illnesses out to a nice weepy movie?

[Joe G]

Since my lovely spouse has FMS/CFS, I have found a web site that has helped me understand her better and cope with her illness. It's, http://fibrohugs.com check out "The Letter To Normals" to better understand what these victims of this horrible disease are going through.

[Jane]

Wow.

That communicates so well to me - and communicates what I myself feel. I have a strong reach to LIVE - to take those hikes and build those gardens, to create so many things. And my limitation is always - always - that it will be too much, that it will hurt, that I'll be unable to complete the task and sick for weeks afterwards just for trying.

Your poem brought tears to my eyes, but I am glad to have read it - I understand what you are saying!

[Hege Renate Lochting]

I really love your poem. Can I post it on my blogg with your name under it?

[Critical illness cover]

Independent studies have shown that most employees do not monitor or maintain their chronic conditions at work because they don't want people to know they are ill. What's worse, resources that could help the ill employee are not being accessed because little or no conversation is taking place between employees and their managers. To complicate matters, employees also have the right to confidentiality, making it even more difficult to talk openly about chronic illness in the workplace.