Today my darker side shows through, my battle, my strength, it’s not weakness. It may leave me weak after. But I fought a round in the ring to win. I made it with only five or six today seizures today. Since I found topiramate, my seizures have dropped from 20 or 25 per day, so I’ll take the 40 per month.
I never say this looking for sympathy, but to show what a world looks like when a person has aggressive epilepsy like mine. The reason it scares people. One of the biggest questions my family gets is, “Is she on meds? It should cure it.” (I wish.)
Following my dreams despite stigma
Cheerful, outgoing, active. I enjoy doing stuff a person with my level of seizures should not engage in because I never know when I’m going to have one. It might five or more, but it never stops me. I live and love life and smile while doing it. My career choices reflect that, too.
I am a personal trainer, I do bodybuilding (I was competitive until the epilepsy got too aggressive) and I am nutritional consultant. I believe no one should give up on their dream, even if it takes longer to get there.
Unfortunately, some people judge epilepsy a character flaw! It’s a disorder I was born with, something I’ve had deal with my whole life and in all my jobs. I don’t judge them back, though. I feel sorry for those who judge me based on their lack of education.
I do get embarrassed with epilepsy sometimes because seizures can cause fear in strangers. I cry from the pain, covered in bodily fluids because of the side effects of the seizures. Sometimes I hit my head or hurt myself without knowing. They are ugly to watch.
But others’ attitudes never reflect me; it reflects them and the ignorance on their knowledge of the disorder. You can read about everything in a book, but unless you live with it you truly never know it. With today’s society, it seems things haven’t really changed from years before. We just have more filters to hide behind thanks to technology.
Even though I’ve had this pesky disorder since I was little, it’s had its games with me. It lets me think I have control and I am winning. Some months and years, it kicks my butt. Literally dominates me.
So I start again. By the gracious of the planet’s alignment and prayers, I get a break and the seizures are tolerable–still there–but I get some control.
During this time, I train harder, do more sports, did more with kids. Do my best to achieve more dreams. But always active, always working on being a better version of myself for my family.
Finding solace in family
I’m grateful for little family we’ve created. My husband and my children live with this. They help me on bad days and have seen my passion for life. I don’t play by rules or I wouldn’t have my family. Or a white fluff ball giving me a kiss and helps revives me when I’m alone.
This girl stays with me when I’m off or have bad days and helps me recover from seizures. She lays and cuddles with me when I can’t get out of bed and brings me to awareness when I go out of it. I’m grateful for my daughter’s pup. And moments like those.
Integrating food and lifestyle choices into epilepsy care
When we found a medication that brought the seizures to a more tolerable level, we took a the chance to try it. It brought some control, going six months without a seizure. But now I’m back in a long cycle. Here I am. New levels of increasing medication are not helping.
Aggressive epilepsy plays its own game and I feel like its pawn. I makes my own moves on the chess board with exercise, clean eating, meditation, yoga, and taking my meds faithfully.
Even though the ketogenic diet is designed for epilepsy like mine, it has never helped me. Many people don’t seem to understand that you cannot put everyone in one box.
I stick to an anti-inflammatory diet and don’t don’t eat processed food that has zero nutritional value. I make all my stuff. It helps my epilepsy but will never stop it.
Nothing will, the doc says. Because I have epilepsy and autoimmune illnesses as well, I choose how to frame my mindset. I choose to be strong, to be brave, to be healthy, to conquer, to break the glass ceiling above me.
Framing a healthy mindset
I write this to show those who feel they have met their match or limits that you always have options. You just have to see it in yourself and know you deserve it.
I’m grateful for my chances in life, for every morning when I wake up and get to try again and be a better version of myself. I work on restrengthening myself because my meds leave my body dry and weak. I will never settle for less. You shouldn’t either.
One doctor told me I could never practice my profession at my current level, that I could never be who I currently am. I saw that as an opportunity to break the glass ceiling and show I am that person.
I’m grateful for family and friends who love me dearly. My husband, who helps me when I’m seizing and have collapsed. Our children, who know how to deal with situations like these, and are calm in life because of having a mom like me.
I’m grateful for the opportunity to be helpful in people’s lives who look for meditation, personal training, nutrition, or spiritual guidance.
I am me. I am happy for waking. I’m blessed for be given a curse and challenge because I would not not know what I could have done if I didn’t have my glitches and hardwire malfunction. I’m grateful for the journey it’s given me.
You need the mind, body, and soul to be complete.
Many blessings to all who read.
OMG I feel this post SOOOO much!
I too am a personal trainer/fitness instructor/yoga instructor and dog trainer who after years of seizure control had to step away from the jobs I loved because my seizures are suddenly worsening again and the meds are no longer cutting it! Thank you for giving me some hope that eventually my shoulder and neck will heal from the last trip to emerg and I will be able to get back to lifting heavy shit!