The day before yesterday I had a cow of a day as I had a flare-up of fibromyalgia. You feel grim, depressed, muscles are very painful and you get foghead when you can’t think straight. You have no idea when you’re going to get a fibro flare-up or how it’s going to affect you which is why I talk of the “fibro follies”.
I’ts always worse when it’s hot and humid and it’s been the hottest, most humid summer in living memory in Kyrenia, which is why I have been somewhat backward in coming forward to write. I’ve been resting a lot.
I’ve had fibromyalgia now for thirteen years. In the beginning I fought it with clenched teeth. I refused to slow down, acknowledge any pain, fought the foghead, tried to ignore severe hip pain, pretended the huge hives flaring up all over my body weren’t happening, and generally tried to carry on as if I was still in the same state of health I had been before the fibro hit.
Didn’t work. It was like hitting a brick wall, bouncing back and getting a second thump on the back of my head as I hit the floor and bounced up and down a few times. Over the years I’ve learned to take things more slowly and to put less pressure on myself. When I have a severe flare-up as I had the day before yesterday I take it easy, rest and take care of myself. I didn’t even feel up to a dip in our communal swimming pool.
I’m writing this because I want to say that sometimes it stinks to be in pain and nothing in the world can make you look less drained and knocked out. And it’s okay to feel that way. There seems to be so much pressure these days always to be perky, bright and upbeat, that it’s easy to feel guilty when you feel down, miserable and depressed.
I’m not a great fan of all this hairy-chested, breast-beating “I’m gonna fight this illness” mantra-type stuff we read about illness. You get people talking about “beating” illness, as if you’re going to whup some mysterious germ or tumour or cancer or virus into submission. People talk about the “courage” of people facing serious illness or disease. So what does that make people who don’t survive, or who feel utterly exhausted by the strain of trying to just keep going in the face of severe challenges to their health and well-being? Cowards? Yellow-bellies? I don’t think so.
One of the things I’ve learned to do with fibromyalgia is to learn to co-exist with it. At first I tried all sorts of therapies but the good old fibro follies hung in there with grim determination. I felt so guilty at not being able to cure myself. I got into the ‘think the right thought” mode because your mind supposedly affects your body. And as that didn’t work, I became self-critical and somewhat hateful towards my poor old body.
And then I read a sanity-saving book by a woman who had contracted muscular sclerosis. She tried every cure possible, and she obviously had heaps of moolah because she travelled all over the place. But nothing worked. And then she realised that MS and her previous life experiences had led her to be an activist on behalf of those who walk with MS, to co-ordinate MS organisations and to realise that when you encounter an illness or disease, it’s not necessarily the cure which is the end goal, it’s what opens up for you as you move towards another part of your life.
When I returned to Australia from the UK in 2004, I finally had a CAT scan which showed that the severe pain and subsequent limited mobility I live with originated from arthritis right through my spine. In fact, my doctor told me that the only similar damage she’d seen was in the spines of men who’d done serious physical labour such as working on jack hammers. At least I had an explanation for the pain which a lot of doctors ignored and over the years I’ve worked with various therapists who’ve shown me how to co-exist with this physical damage.
I know I’ve developed coping strategies. I do half of what I think I can do which in itself is hard work as I want to speed up to a strong gallop most days. I work much more on-line than I used to, as I enjoy quiet times, writing and art and photography, something I might never have discovered if I was still running around furiously like a rat up a drain pipe. One of my doctors commented that I was the most positive fibro patient she’d ever come across, because I’d fall over, pick myself up and then work out strategies to move forward in a different way. So in an odd sort of way, while life is different, the fibro follies have had a positive effect on my life.
I do, however, reserve the right to say when I’m in pain. I’m fed up pinning on the bright smile I’ve worn all my life to hide when I’m hurt, down or depressed. I do know, thank goodness, that when the fibro follies strike and I feel depressed, dark and envisage the end of the world opening up, I can conjure up a little mental placard which says “This too will pass” because I know that it’s not the end of the world when the fibro follies start dancing around and that within a few days I’ll wake up and feel so much better and quite bemused by the dark days I’ve just gone through.
I do have a little prayer which I like to repeat when I’m feeling down:
“I am a child of the light.
I live in the light, I love the light, I serve the light.
I am protected, supported, sustained and illumined by the light.
And I bless the light.”
And I do love this blessing which is from the 12th century and the author is unknown:
BLESSING OF PEACE – HEALING
Deep peace I breathe into you,
O weariness, here!
Deep peace, a soft white dove to you;
Deep peace, a quiet rain to you;
Deep peace, an ebbing wave to you!
Deep peace, red wind of the east from you;
Deep peace, grey wind of the west to you;
Deep peace, dark wind of the north from you;
Deep peace, blue wind of the south to you!
Deep peace, pure red of the flame to you;
Deep peace, pure white of the moon to you;
Deep peace, pure grey of the dawn to you,
Deep peace, pure blue of the sky to you!
Deep peace of the running wave to you,
Deep peace of the flowing air to you,
Deep peace of the quiet earth to you,
Deep peace of the sleeping stones to you,
Deep peace of the Yellow Shepherd to you,
Deep peace of the Wandering Shepherdess to you,
Deep peace of the Flock of Stars to you,
Deep peace of the Son of Peace to you,
Deep peace from the heart of Mary to you,
and from Bridget of the Mantle,
Deep peace, deep peace!