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.
Ross River virus – an end to work for my husband
Ross River virus is spread by mosquitoes, it’s quite prevalent in the warmer parts of Australia and is gradually spreading further south. It’s characterised by polyarthritis which causes your joints to swell, you get pretty bad pain and fatigue, and your muscles ache. Depression is part of the cocktail of this disease too.
When Bryan first described how he felt, I told him I thought he’d got Ross River fever and at first I didn’t take it too seriously as I thought it was something that would clear up quite quickly. But I was quite wrong. My previously super-active partner sat in an armchair each day, wracked with pain, suffering chronic fatigue, and hardly able to move. He had always been a thin man but he got ever thinner and eventually ended up at six stone.
Bryan was deeply depressed and he told me years later that he came close to committing suicide because of the constant, agonising pain and the feeling that he’d gone from being a productive worker to someone who had become utterly useless. Funnily enough, in 2004 in Perth, after we’d spent two years back in the UK, he had a reading with a medium who told him he’d come very close to death, something to do with his immune system being rock-bottom and Bryan being close to getting a devastating illness which would have killed him. Then he said: “But you were spared. You’ve been given a second chance.”
Bryan saw a couple of locums who diagnosed Ross River fever. But when the local doctor returned, he told my husband that he couldn’t have Ross River because he was nowhere near Ross River. In blind prejudice, and without knowing anything of Bryan’s work history – a hard worker all his life – he decided that Bryan was faking his illness. This was despite the fact the two locums had diagnosed my husband with Ross River fever.
In desperation, we eventually decided to go to a doctor in Ipswich in the hope of getting more decent, respectful treatment. I remember sitting there with my very sick, grey-faced husband and the doctor – a complete stranger who’d never met him before – looked at him, after we’d explained the situation, and said: “Well, I’ve never met you before, Bryan, but looking at you I see a very, very sick man.” What a relief to be taken seriously!
Bryan was sent to a rheumatologist who carried out various tests, including the PSA test for prostate cancer, and I remember sitting there worried sick that he might have cancer. I needn’t have worried about that. Something else pretty devastating had happened. When Bryan came out of the doctor’s surgery he looked shell-shocked. Ross River fever sparks polyarthritis and this had affected vertebrae in his back which had been damaged by heavy work on building sites, an accident when he had a bad fall on a building site, and getting blown up and badly injured while serving in the British Army in Cyprus. The rheumatologist told Bryan that if he attempted any heavy lifting, he could damage his back further and end up paralysed. He advised my partner to stop work immediately.
So my husband’s working life had come to an end overnight, so to speak. We drove back to Boonah, very silent and, I think, very depressed about our financial future. One thing we knew we’d have to do and that was sell our home as the block was too big for Bryan to maintain due to his ill-health. And as I still had a gammy leg from my fall, there was no way I could keep the block under control.
A turning point in all this downhill race was that Bryan became eligible to move to the disability pension. We had no idea that this was a better payment, we simply knew that my partner was now officially disabled and so it made sense to apply for the pension. The switch from unemployment benefit to disability pension happened without a hitch, and we found to our surprise that we were slightly better off financially. We could get pensioner discounts on rates and electricity. And the rate of payment was higher than the unemployment benefit.
Selling our home on Mt French
Very reluctantly we put the house up for sale. It was still a rock-bottom market and nothing happened for a while. Bryan would recover somewhat from Ross River but then have to mow the block to keep the grass under control, and he’d go backwards again health-wise. We really wanted to leave Boonah but, however much we were itching to move, no offers appeared. Eventually we got one offer, which would mean a loss of $25,000, a really devastating hit on our finances as by then we had exhausted our savings. However, we decided we were selling in a depressed market but we were also buying in the same market. So we went looking for a house in the Boonah district.
What did occur to me later was that, as long as we wanted to quit Boonah and move elsewhere, nothing happened. But as soon as we decided we would stay in the town, particularly as we were both still in fairly poor health and couldn’t handle a major move elsewhere, the situation changed. It was as if we were meant to remain in Boonah for the time being.
I later realised that this is what happens to people who get drawn, quite unconsciously, to this area. I lost track of the number of people who I queried about their reasons for ending up in the town. They all looked puzzled and said it was by accident (like us), or they had a vision of Boonah for a long time (Yvonne), or liked the look of the town when they visited. Looking back, it was as if the area attracted people, turned them inside out and then, once they’d had their shake-up, sent them on their way. Those who really changed in some fundamental way left the town to carry on their new lives elsewhere.
Tarot: The Wheel of Fortune
At the time we were selling our home, however, I had no idea this sort of energy vortex existed. We were desperate to move as we were getting close to bankruptcy. I do remember looking at a picture of a house in Boonah and being attracted to the good energy which surrounded it. I insisted on looking at it, although our real estate agent tried to head us in the direction of another, grotty house he obviously wanted to get off his books. The house we went to look at was a cottage, run-down, a bit seedy but with a really lovely, large garden and lots of bounteous trees providing shade and a richness to the whole block. It was about two minutes from the town centre and in a quiet cul-de-sac. We put in an offer which was accepted. And we accepted the offer on our home, with a heavy heart but with no choice given the state of our health and finances.
Just to wind up our bleak time at Mt French, our dear old Mr Smudge came running in howling in the early afternoon, the day we signed the contract of sale. He was obviously very ill and I drove with him at breakneck speed to the vet’s. He’d been hit by a car and had to be put to sleep due to the injuries he had sustained. I held him in my arms and he purred as he slipped into the beyond. It was such a sad end to such a loving, kind and affectionate cat, and we were devastated. At the same time, our last cat, Jessie, had a hard lump on her cheek. The vet operated and we found she had a cancer in her saliva gland. We hoped the surgery might clear it up, but within two weeks, it was clear that Jessie was dying and we had to repeat the trip to the vet’s to have her put to sleep. Thank god our little Jack Russell, Rosie, remained in good health.
I remember arriving back at our home and looking at Jessie’s little body in the back seat and feeling grief overwhelm me. We had been through so much heartbreak, sadness and despair in this house, and the loss of our two cats seemed to set the seal on a period of our lives which had been far from our excited expectations when we had set off from Perth with such high hopes. I cried so much that day in a way I’ve never cried before or since. It was as if I’d got through everything trying to be positive and cheerful, burying the hurt and setbacks deep within, but Jessie’s death opened the floodgates. I sobbed my heart out all day, utterly unable to stop. It was absolutely gut-wrenching, those deep cries of pain from deep within which erupt and there’s nothing you can do to stop them.
When we walked out of the house, we did so with enormous relief. Whereas we’d been sad to leave our home in Fremantle where we’d lived for ten years, we never looked back at the house on Mt French as we drove away. But, as it happened, the end of our Mt French misadventure heralded a complete turning point in our lives and from then on, we never looked back.
In the Tarot the Wheel of Fortune can very often mean a turning of the wheel to more fortunate circumstances in life and that’s what happened once we’d left our home on Mt. French. It was, by the way, a No. 1 house in numerology which means completely new beginnings, a clear-out of the old and a fresh start in life. It was if our old life had been completely ripped away from us, we had been turned inside out and in our new home we were embarking on a completely fresh life. A true Dark Night of the Soul which I can see, looking back, brought us great blessings but, god help me, I never want to go through anything like that again!