I’ve had a long break from writing because I’ve been hit with a rather bad dose of sciatic pain which has meant sleepless nights and some discombobulated days as a result. A while back I went to an all-day workshop with quite uncomfortable chairs and the result was that health-wise it really knocked me sideways.
However, in the intervening period I had an experience which I found provided rather a good lesson in coping with fibromyalgia and its effects.
I learned to say no!
Aha! Perhaps that’s one of the big lessons when we get fibromyalgia – learning to tune into our bodies, listen to what all our cells and bits of pieces tucked away under our skin feel like, and acting in harmony with our body rather than trying to run out lives strictly from our heads. And finding the inner strength to say “no” when we need to look after ourselves and not put everyone else first.
Okay, it’s a bit simplistic, I admit, as fibromyalgia is multi-faceted, acts differently in each individual and really is quite hard to pin down in terms of specific healing aspects. It seems to vary from person to person. But I was looking at a blog recently, written by a fibro sufferer, and it was like looking at myself many years ago: angry, furious at my body letting me down, straining against the bit to get active again, still over-doing things, railing against the world, refusing to listen to my body and to its message
I felt exhausted reading the blog and realised how far I’d come in working out how to co-exist with what I now consider a learning tool for my body.
I also created this piece of digital art to illustrate what fibromyalgia feels like: the blackness when you feel despair; the flashes of light which represent the chaos of this health challenge because you never know what it’s going to dish up next; the red which signifies the pain; the green which represents the peace you can sometimes feel with fibro; and the blue to signify the need to tune into your body and communicate with it. Because, as I said in my last post, trying to push through fibro is pretty damned useless, all that will happen is that you’ll be flat on your back and probably worse off than before.
All these things of course I’ve learned over 15-odd years of living with fibromyalgia. Nevertheless, I still get tempted into trying to do more than I can. A while back, I was asked to take part in a mind, body, spirit show in Kyrenia. The idea was to take my computer and printer along, create individual artwork for visitors, and do readings. I quite fancied doing this, but deep down I knew really it’s beyond me physically. Nevertheless, I’ve been pummeling my brain to get the pieces together – to be able to travel to the exhibition and set up, cope with leaving the four dogs alone for a long time in case they make a noise and upset the neighbours, worrying about whether we could handle the financial costs, and whether this was an appropriate step for me.
Truth to tell, as I said above, I knew deep within that I should say no. But I’m a Libran, I hate saying no when people ask me to do something. And if I’m really honest, the good old ego preened itself at being asked to take part and at the idea of going and creating art.
In the end, I decided to do a Tarot reading for myself. The spread was follows:
This reflected the fact that I felt a deep unease about taking part in the exhibition, that there were underlying features I felt were hidden, and I felt some sort of deception but was uncertain what it involved. In the event, I showed the card to my husband – he who scorns the Tarot – who said immediately: “You’re deceiving yourself about your ability to take part”. Ho-ho, spot on!
The next question: What would be the result of taking part? A: Five of Coins
Hmmm, pretty hard to read this one, eh? Difficulties, poverty, and ill-health.
Now the cynical among you may think the Tarot is a heap of old cobblers but – hang on! I repeated this reading three times, shuffling the cards each time, and waddyaknow? the same cards came out every time!
Message received, loud and clear. Don’t take part. Say no. Which I did and it was very hard. It was, however, made all the easier because I had a terrible night with sciatic pain, the day before I had to make a final decision, as if my body was waging guerilla warfare against my taking part in the expo. But having made the decision, I felt like a load had gone from my shoulders, I felt profoundly I’d made the right decision, and my body felt all the lighter and more cheerful for it.
So to wind up, the next day I drew another card: what is the result of my decision not to take part in the exhibition? And the result: The Wheel of Fortune. This is one of the very positive cards in the Tarot pack, and it’s part of the Major Arcana which signifies times of great significance or importance in your life. It means a fortunate turn in circumstances which I think was a great confirmation I’d made the right decision.
I don’t know the ins and outs of people who have fibromyalgia as I do. My own experience has been, however, that I have had to slow down. I cannot take life at top speed as I used to. I have to tune into my body to see what’s going on from day to day.
I appreciate people who kindly offer supportive advice – whether it’s nutritional or to suggest certain therapies. I do know I get fed up with people who make instant diagnoses of fibro, how you can get better and what the underlying causes are. It’s particularly difficult when you get someone into metaphysical analysis of illness who tell you all about your wrong thinking, your crappy attitude and how, if you think the right way, the fibro will disappear overnight.
I happen to know my own body now, I have tried various therapies which have improved my health and helped me cope better. Considering what I was like in Boonah, I am heaps better. But I know my own body, I know what it can and can’t handle, I happen to think illness and disease are very complex and sometimes they’re a mystery which can be frustrating as we live in a scientific society which wants logical answers and cures.
For me, most importantly, you need to decide what brings heart and soul into your life and live your life with passion. Passion doesn’t necessarily mean running around doing lots of things or being hyper-active. It means working out what really makes you happy in life, what creates ease for your body rather than disease, and what really lifts your heart rather than drags you down. And, of course, only you know the answer.
Nor does the answer drop into your hot little hands like manna from heaven. It takes time to work it all out and it’s why I’m really rather grateful to the Fibro Follies because working through all the challenges has finally led me to focus on digital art and the immense creative pleasure it brings my own heart and soul.
I make the above point about lessons taking a long time to learn because back in Boonah, I found it very, very hard not to be running around like a cut snake doing the things I loved: teaching, working with crystals, going to health expos or taking part in markets. And, of course, there was the huge question mark of my father living beside us even though I had no direct contact with him. I did have feedback via the terrific social worker who was helping Dad. But even so, he suckered her like he suckered so many people and it was hard to sit back and stay detached.
Finally we came to the conclusion that our time in Boonah was over. Bryan wanted to be closer to his family and I wanted to get away from Dad’s alcoholic antics. So we decided to return to the UK. I rang Dad’s social worker and told her what we’d decided. She told Dad we were thinking of returning to the UK and his response was: “They’re not going anywhere. They’re waiting for me to die to get my money”. So then she had to tell him we weren’t thinking about it, we had decided.
I think it must have been a hell of a shock for Dad as I’d always, in one way or another, been there for him. So one day I saw him on his verandah and half-waved, whereupon he waved back and obviously wanted some contact. So at Easter 2002, I went up to see him, the door was open but I refused to enter until he specifically invited me in. And when I’d sat down, my father was polite, respectful and obviously pleased to be back in contact.
Nevertheless, I refused to put my life on hold for my father as he was still boozing like the clappers, his house was filthy and he still was leading a chaotic lifestyle. So we put the house up for sale. It took a while but when it did sell, it was as if everything fell into place as the buyers were really pleasant and helpful. We sold for cash all the antique furniture I’d inherited from Dad when Mum died. This paid for the air fares to Perth and then to Manchester, in the north of England where Bryan’s relatives lived.
Leaving my father on his own was one of the hardest things I’ve ever done. It really broke my heart when we got up early in the morning we left and drove away. I couldn’t look at my dad’s house or our house and, when the jet took off from Brisbane Airport, I just cried my eyes out.
We flew back to Perth with Rosie and to spend time with our friends before leaving Australia for what we thought would be the last time. We kennelled Rosie just before we flew to Manchester as she had a week or so to wait for a flight back to the UK.
And on October 12th,2002, just after the Bali bombings, we walked down the gangway onto our flight to Manchester. As we walked towards the plane, I felt another great surge of grief and guilt that I was leaving my father on his own and saying goodbye to such good friends, and burst into tears. Bryan hugged me and said he’d be wondering when it would hit me. So as we taxied down the runway for our new life in the UK, my last view of Australia was blurred with tears, a hazy view very reminiscent of the view of Australia on the horizon as the cruise ship on which I arrived in this beloved country in 1972 sailed ever closer to Fremantle, the port of Perth in Western Australia.