Rising Above Epilepsy: My Journey from Darkness to Hope - Part 2
In the first part of this blog series, I spoke about my journey from experiencing my first seizure to undergoing my first surgery.
As I mentioned my first brain surgery did not grant me seizure freedom but drastically improved my quality of life. Moving from 40 tonic-clonic or grand mal seizures a day to intermittent drop attacks, nocturnal seizures, and partial seizures this was a life I was more than happy to live for the past thirteen years.
Refusing to let my health define me, I pushed the limits and broke outside the box I originally felt my health place me within. Rejecting the boundaries that my diagnosis had placed upon me I began to build a life full of joy, laughter, accomplishment, and positivity.
This process started off small, with things like returning to school, completing my leaving cert, and beginning my time in third-level education. It then began to grow into graduating college not once, not twice, but three times as I was awarded my most recent qualification of the first class honors in a bachelor of business with marketing.
I know what I have listed above could all be considered major milestones within my life but what I want to talk about is the smaller things, the things that most people don't consider a blessing as they have never been taken away from them.
The small things like being able to pick up my dog and give her a cuddle, being able to carry a cup of tea, being able to hold my goddaughter and cuddle my nieces.
As time went on my seizures changed and I was no longer experiencing drop attacks. This is where I began to cause my mother a lot of stress as I pushed the boundaries even further and decided to live my life to the fullest even if that meant taking risks.
I was at a point where my epilepsy was nonresponsive to medication, and so against the advice of both my doctors and my parents, I made the decision to come off medication completely. I had decided that if this was the life I was going to accept and live to the fullest, I didn't want it clouded by medications that were impacting my energy.
I talk more about this side of things and the impact it had on my mental health in the blog post linked here.
I moved on to combating the bigger things, again things that may seem small to others, but to me meant the world.
I began to explore the world of fitness, joining the gym, taking up running, and enjoying hikes in nature. This then grew to things like swimming in the sea with my friends, cycling a bike, riding a horse, and biggest of all, starting a business.
Throughout all of this, I did face my challenges, both physical and mental. Tiredness was a constant struggle as the nocturnal seizures continued. The more tired my body would be from activities during the day, the worse and more severe the seizures would be at night. I often struggled to find the balance of living my life and protecting my health. Mentally this took its toll on me, leaving me to try and navigate the world of anxiety amidst my daily life.
In 2020, the mental health side of things reached a tipping point to where I sought professional help through counseling and began practices of mindfulness, meditation, and breath work.
I should note that throughout this time since my previous surgery, further surgical options were available to me. As brain mapping became available so did the option for further surgery. This surgery, however, did not come without its risks. These were risks I was not willing to take at the time. I was at a point in my life where I was happy with how I was living, I was experiencing nocturnal seizures, but in my opinion that did not impact my daily life.
I accepted that this was how my life was going to look forever as I was unwilling to take the risk as I was content to continue to push the boundaries and curate a life that brought me happiness.
After putting in the work of focusing on my mental health, and building a life I was excited to wake up to, in 2022 I was in the best place of my entire life. Spending my weekends with friends, my weekdays building my brand, and my evenings sitting around the table chatting and having tea with my family. I was at a point where I was truly happy.
I had built a life a younger version of me could only dream of. I had broken down all the walls I once saw as restrictive boundaries placed upon me by my epilepsy. My daily routines now consisted of weight training in the gym, consuming educational content online and from books, developing products, and continually working to further myself as I was filled with ambition, determination, and resilience.
The year of 2022 featured me graduating from college, continuing to build the flower child brand, and beginning my first place of employment within the marketing department at SETU Carlow. My ambition and determination slowly began to turn to overworking and spreading myself too thin. Approaching Christmas of 2022 I found myself working a 75-hour workweek between 40 hours in SETU Carlow, followed by evenings and weekends spent nurturing the flower child brand.
This is when things took a turn for the worst, and I found myself going from being the happiest I have ever been to encounter every single one of my worst nightmares at once.
In my next blog post of this series, I will be discussing what that looked like and how I found myself having the rug pulled from under my feet and back in a state of extreme health issues experiencing up to 50 seizures a day in 2023.
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