I have epilepsy. I expect that I always will.

I had my first seizure when I was a baby - a febrile convulsion, linked to a high temperature. It is fairly common for babies to have a seizure when they have a high temperature, so the doctors didn't realise it was the first sign.... When I was a teenager I had two clonic-tonic seizures in the space of a month. When I have a seizure I experience a wide range of effects including; loss of consciousness; loss of memory; convulsions; my eyes roll back in my head; bizarre muscular movements in a semi-automatic manner. We noticed there appeared to be a range of factors occurring that were consistent with both seizures; long-standing family stress, tiredness (both occurred in the morning), watching television and when I was menstruating. I started taking Tegretol after the first seizure.

I took Tegretol for many years and then my Physician said that my EEG's showed that there was a pretty good chance that my seizures were linked to puberty and he recommended that I try trialling off my medication.  I did trial off it...however I was at University and not taking very good care of myself at the time. Needless to say after several months I had another seizure, so then resumed taking medication.

The second time around with Tegretol I experienced extremelly negative side-effects. I had graduated from Primary Teaching and was teaching a Grade 4 class. On one day I took my doses of medication too close together and ended by teaching more than 50 children! Double vision! Yikes! I had no idea which was the child before me and which was the duplicate! There were other side effects too that troubled me....a metallic taste in my mouth...extreme fatigue (I would wake up in the morning and yawn my way through the day)...and depression (I would spontaneously cry without any reason).  Not good!!!!

Anyway, my Dr recommended a change to Epilum which thankfully had few noticable side-effects. It was more than a decade later that my annual liver function checks came back not so good...and I was under 30. It seemed as though Epilum had little outward effect however it was hard on my insides... I knew one day I wanted to become a Mum and that it was problematic to be pregnant and taking Epilum. A friend who was a Dr had told me that if he were me, he would (with medical supervision of course) trial off medication again.

I discussed the issue with my neurologist who tracked back through my medical history. He compared my EEG results from my teenage years, and those more than a decade later...nothing had changed.  Something had changed though...I had changed. I had grown up and was much more able to take good care of myself - physically and emotionally.

So, to cut a long story short...I did it! I voluntarily surrended my drivers license and negotiated support from my employer. Though that process is a whole other story in itself....let's just say that throughout my career the worst I have ever been treated as a result of my disability was in Disability Services Queensland....so after a fight...where I ended up involving the unions and lodging a grievance and producing multiple medical certificates and months of delay...I was able to remain in my job and receive some support from my employer during the six month trial.

Needless to say, the trial was successful. That was in 1997.

Here we are in 2009! Woo! Hoo! No medication since!

What have I done since then - whitewater rafted on the Tully River, travelled around the world - London, New York, Buenos Aires, Agra, Jaipur, Varanasi, Delhi, Iguassu Falls; danced in the Carnivale in Rio de Janiero; climbed in the Andes at Machu Picchu in Peru; helped organise an international conference on Strengths-based Practice in Hyderabad India that was attended by 250 practionners from around the world; had two beautiful children; I am currently completing the final subject of a double degree (Bachelor of Business and Commerce and Bachelor of Arts from Monash University); company director of my own business Plan-it Life Pty Ltd and I have a wonderful relationship with a lovely man....the father of our children.

What does it take to remain off medication and seizure free...self-awareness. Every day I must pay attention to how I feel - how tired I am, how stressed I am, what time of my cycle is it....

On days where I feel vulnerable/at risk - I take IMMEDIATE action - I don't drive or do anything that could possibly endanger myself or others, I usually immediately go to bed in a darkened room (once while I was at work, I lay on the floor with my head under my desk - that was the darkest place I could find) and I ALWAYS ask for support from my family and friends....I don't leave myself alone.  This is not something I could do alone - I need support to make it work!

Luckily for me...so far, so good! 

I am a pragmatist first and foremost. Health and safety is my number one priority...so I know that there may be times through my life when I need to resume taking medication, for a short or long-term period. I know that sometimes when life circumstances get too complex it is sensible to take medication, to keep healthy and stay safe. 

Recently after having my second child in two years, it was one of those 'high risk' times. As a result of the extended sleep deprivation in the last two years my partner, GP and I had extensive discussions about the possibility that I may need to resume medication. Thankfully I haven't had too. There has only been one occasion in the last year that I felt unwell/at risk and I was able to immediately go to bed and spend the day in bed. My partner cared for our children that day....and kept a watchful eye on me. 

So...it's little steps every day...or as Paul Kelly so eloquently wrote "Little decisions are the kind I can make, big resolutions are so easy to break...."

Paige