In January 1999, on New Year’s Eve, my life changed drastically for the worse. All my life I had known that my body was not normal. I never slept properly, I seemed to be accident–prone and suffered from constant dislocations to my joints. I had gone out to an all night dance party and boogied until 8 in the morning, then home to bed. When I awoke, I was in complete agony - it felt like someone was sticking knives into my hips and lower back. It was so bad that I couldn’t walk at all and had to crawl around the house on my hands and knees. Off to the hospital I went, with a sinking feeling in the pit of my stomach – I knew that every time the doctors had seen me with this sort of problem, they had been unable to do a thing for me besides take useless x–rays, mutter about hypochondriacs, load me up with massive amounts of pain–killers and send me back home again.

With a ten year old son at home who needed meals, clean clothes, etc, I was stuck between a rock and a hard place. Because the doctors couldn’t find anything wrong with me (and in fact had decided that I was ‘imagining’ these problems) I was not eligible for any help from the Health Funding Authority for housework, personal care or even a wheelchair. The only clue the doctors had been able to give me was the name of one symptom they could diagnose – hypermobility. All I can say is thank goodness for the internet! I searched the net for ‘hypermobility’ and to my delight I found page after page of information about a hereditary connective tissue disease called Ehlers–Danlos Syndrome. As I read through the stories and case studies tears of relief ran down my face because it was like reading my own story again and again – not only that, but I now knew that the problem I had was not in my head, it was REAL.

To cut a long story short, I printed out all the information I could find, took it to my doctor and insisted that I be tested for this disease. The test results were positive and at long last I had a name for the problem that had been making life so difficult for me –

What a relief. Now I was eligible for home help, a wheelchair, house modifications, disability allowance and invalid’s benefit. The downside of knowing what was wrong was finding out that there is no cure for this disease and that my son also was affected by it.

EDS is not a lot of fun. Besides having extremely flexible joints and stretchy skin, I bruised easily and had chronic fibromyalgia. This meant that I suffered constant pain and only ever slept for 20 minutes at a time. I was always exhausted and grumpy. My muscles were having to do the job that my tendons and ligaments were too weak and stretchy to do, so they were always extremely tense and never relaxed. Basically, it’s like my body is held together with perished knicker elastic!

Despite having a somewhat wrecked body and being stuck in a wheelchair, my pride would not let me just sit around and bemoan my fate. I hassled my occupational therapist and physio to get me into a live–in rehabilitation clinic where I underwent intensive daily physiotherapy for four weeks. Then I set to work training for my biggest challenge ever – the 1999 New York Marathon. I got there, I did it, I felt fantastic!

The next big challenge was dancing in my wheelchair with a mixed ability dance group called Touch Compass at the Sydney 2000 Paralympics. Got there, did it, felt fantastic… but frustrated. There was still no light at the end of the tunnel as far as being able to walk properly again. Despite my increased physical fitness, I still had to be carried up and down stairs and I still couldn’t get a decent night’s sleep.

Touch Compass offered me the opportunity to dance with them again in March of this year so I went along to rehearsals, all excited – I really do love to dance, even on wheels. My body had gained quite a bit of strength and I was walking a little bit better. Silly me, I became over–confident, stood up out of my wheelchair during a dance improvisation and tried to lift one of the other dancers. Net result – five dislocated ribs, several days in hospital and six months’ bed-rest and recovery time… DOH!

By early September of this year, just two months ago, I was still trying to get back on my feet. I was in bed for up to 14 hours a day and a car trip to the physio was too exhausting to cope with. Enter physiotherapist Jamie Cook, a most unlikely angel, but an angel nonetheless! He said he had some amazing new stuff that had achieved remarkable results with some of his other clients. Jamie brought around some Nikken products, which use advanced Japanese magnetic technology for me to try out. He gave us a quick demonstration of how they worked. It was bizarre – I could feel him using the magnets on my partner across the other side of the room. My fingers tingled, the hairs on my arms stood to attention and best of all, the nasty stabbing ache in my lower back started to fade away. It felt so good, I burst into tears and gave Jamie a huge hug.

Jamie brought Dean Rhodes, another physiotherapist, around to see us. When he got me to lie down on a Nikken sleep system (a magnetic mattress and ceramic-fibre duvet) it felt like the world was giving me an enormous hug!

Dean, bless his heart, loaned me his demonstration sleep system as well as a flexible magnetic back pad to slip into the back of my jeans. For the first time in 13 years I slept through an entire night. I woke the next morning with plenty of energy. A week later I was walking – I can’t explain how good it feels to be able to walk freely, go up and down stairs by myself and have enough energy to share it doing what I love – helping others. People I have known for years are amazed when they see me WALK into a room. Some don’t even recognise me at first.

I was even able to stand up at my wedding six weeks ago and go for a walk on the beach, hand in hand with my new husband on our honeymoon. You can’t put a price on that. Last week I resumed my massage and energy therapy business. This technology has given me back my life. Now, thanks to Nikken, I can help others to do the same.