Yes, I know, I’ve pinched the title of one of the Rolling Stones’ tunes for this particular post although, to be very honest, my ramblings were a bit later, about 4.30am, to be precise. However, Midnight Rambler sounds far classier than Four-Thirty AM Rambler, so I’ll stick with that.
Quite often at night, courtesy of fibromyalgia and a damaged spine, I get very painful hips and legs and get up to have a stretch, have a cup of tea and break into the pity party you can sink into in the early hours of the morning.
So as I sat on the sofa this morning with one of my cats stretched out beside me, and having fed another cat who was yowling for tucker as dawn started to break, I contemplated how my life has changed since I got fibromyalgia.
I used to be a Type A personality, driven, always in a hurry, not paying much attention to a slow way of living (not paying much attention? I DESPISED a slow way of living!), trying to get approval and validation from others to feed my sense of self.
And one day in 1999 I remember walking out of Booval shopping centre, near Ipswich just outside Brisbane, Queensland, on a hot, sunny day when I suddenly got a grinding pain in my hips. I had been feeling increasingly tired but the sudden pain brought me to a halt. I managed to sort of swagger to our car by swinging my hips and sinking into the car seat with a huge sense of relief.
Shortly after this I began to get red, intensely itching blotches on my arms and legs. They’d start as small itchy lumps then spread and join up until I had huge red, incredibly itchy blotches which continued spreading as I looked like the dreaded lurgy. I was terrified as I had no idea what was happening. I’d make an appointment with our local doctor but, in a rural area, you had to wait a week or so and by that time the blotches would have disappeared. But many a cold night was spent holding ice on these red blobs to try to quell the intense, frenzied itching and stop the blobs spreading because they got worse if I was in a warm bed.
At the same time I began to experience chronic fatigue. I’d get out of bed, flop on the sofa and stare at the ceiling in a fog, unable to think straight or get motivated to do anything. If I tried to break through the fatigue, I’d bounce off an invisible wall and feel even worse.
I saw one doctor who told me straight out I was bludging and really, if I’d had the energy, I’d have had a good go at bludgeoning him for implying I was lying. Finally, as my legs and arms got increasingly painful, I saw a doctor in Ipswich who referred me to a rheumatologist who diagnosed fibromyalgia.
So I went home, thought I’d finally got a diagnosis and life would carry on as normal. My husband thought the same too. WRONG. Having a diagnosis does not make a chronic illness go away. What I gradually learned over time was that I needed to live with the Fibro Follies, as I call fibromalgia, and learn to compromise with my body which overrode my desire to be hyper-active. My body had decided to call it quits. I had burned out and my body’s survival mechanism had kicked in big-time. I don’t know quite why I keeled over at this stage in my life, perhaps it was a result of being quite ill when I broke my leg and ankle in 1996 as I never seemed to fully recover from that. Or perhaps because I was dealing with the stress of a father sinking ever deeper into rock-bottom alcoholism.
I learned to rest, take life a lot more slowly, to do only half of what I wanted to do in order to live with the Fibro Follies. I’d have good days when I had to temper myself not to go bonkers and then fall in a heap again. I had bad days out of the blue when the fibro fog and pain would turn up out of the blue for no reason at all and I had to let go and rest.
I found out the ongoing hip pain was because I had damage all up my spine. After I’d had a CAT scan in 2002 and my doctor read the results, she said the damage resembled that of someone who’d worked on a jackhammer all their lives. I have no idea how this damage was caused but there you go – from the person who used to whizz past you, or huff behind you at waiting in a long bank queue or glare at you if you didn’t serve her fast enough in a shop, I have now become someone who walks slowly, notices nature, takes time to look at people and smile at them, and who has learned to treat people with much more tact, politeness and consideration.
A long day’s journey – not into the dark, but into the light of really living in a far more conscious way on earth. And all courtesy of my body which I ignored for so many decades until it decided to go its own way and demand I look after it a damned sight better than I had been doing.
Now, like so many who end up with illness, whether life-threatening, painful or challenging, I have tried many ways to say good-bye to fibromyalgia. In 2003 in Pingelly, on the wheatbelt outside of Perth in Western Australia, these itchy patches went truly berserk and I ended up for nearly eight months with head-to-toe hives which is what I found the itchy patches to be. I thought I would go insane in that period. Finally the huge, itchy lumps died down although they’d continue to pop up from time to time until I found a truly brilliant acupuncturist and Chinese herbalist in Kyogle in northern New South Wales whose treatment put them to rest forever, I hope, fingers crossed.
But like others who live with this mysterious chronic illness which mugs you as you trot along your life’s path, I have found that healing has been listening to the voice of my illness, working with it, and learning to live a different life. I’ve become a writer and artist. I enjoy teaching as and when I’m able. And in so doing, I’ve healed in a far more profound way than if I’d been able to shake off the aches and pains of the Fibro Follies and continued in the fast, furious life I’d led in my earlier years.
I make this point because so often I read of people “fighting” cancer, being a “survivor”, or “beating” an illness. And I do wonder why we consider the body’s imbalances which manifest in various ways as enemies to be beaten into submission. After all, what do you call someone who perhaps dies of cancer or multiple sclerosis or motor neurone disease? A loser? I don’t think so.
Illness can teach us not only to dance with our bodies and lives in a quite different way. It can, hopefully, open the way for others to open their hearts in compassion and kindness, rather than to judge whether we can bash our illness or disease into total submission. It’s not about winners and losers. It’s about learning to shine our light in the good and the bad times, and to be fearless in letting people know when we’re in pain, need to care for ourselves and step off the treadmill of hurry, rush and mindlessness.
Illness and the challenging ways the body can live a life of its own, beyond our puny efforts to control things with our mind, are to me one of the mysteries of life. Yes, we can find ways sometimes to heal from a physical imbalance. But often it’s the very imbalance which leads us to heal in very profound ways that can teach us to live life in a more spiritual, caring, focused way than we did previously. And that is true healing, a return to smiling at life through our hearts and souls.