Thoughts on having fibromyalgia

For those who don’t know fibro it is a systemic syndrome they now term a ‘neuro-endocrine disorder’ without known cause. For me it manifests primarily as joint pain and fatigue with a host of related, probably secondary, co-existing conditions–but since they don’t understand its cause or workings who knows what is the essence of it?

I originally wrote the paragraph above for my bio on Ravelry*, the hot new website for all things yarn, knit and crochet. But the more I passed my page on my way to something else, the more it bothered me that my blog, with the title I chose for it, says nothing about fibro beyond noting that I have it and referring to a day on the couch. So I decided to write a bit about what having fibromyalgia means to me at this point in my life.

Well, I hurt a lot, sometimes more than at other times, and always enough that a good night's sleep is a real rarity. Because of this and because so much of my body's resources are tied up with whatever the source of my fibro is I am often fatigued and I tire easily. And when I do push it I generally pay the price over the course of subsequent days: fibro paybacks or hangover, take your pick. I could keep describing symptoms but I've done that before, and anybody else can look them up--I'm tired of them and I don't really want to talk about them again!

For one thing I lead a REALLY circumscribed life, not even getting out of the house a lot of days. Hence fabric and yarn, and my excitement over an online community devoted to at least one them these....

For another thing I just don't have the energy, the stamina or the concentration for the intellectual activities with which I used to so gleefully fill my life. I can't maintain that kind of focus for any length of time, and that's frustrating--so I don't do it. Physical, tactile creative stuff that I can easily pick up and put down, books that are strong on plot so I don't have to struggle to keep track, things I can make up as I go along--all these I can manage, and produce things that are beautiful, useful, pleasurable to me and to others.

I've spent time in therapy learning to name my feelings of grief for my old life and for the career I no longer can have, the anger at this betrayal of/by my body.

And at this moment I don't have the energy to keep writing, in keeping with the rest of my life these days.... Back to my comfy chair and whatever's on my needles.


*Still in beta, there are over 70,000 members/users on Ravelry, 1.5 million page views per day, a total of 1.2 million photos (thanks to Flickr), 1 million forum posts, 411,000 projects, 38,700 patterns, and 16,700 yarns, according to its blog and my updated estimate on users. Somebody said recently that there are more knitters than there are golfers in the US, and Ravelry's popularity bears this out.