Living Your Best Epileptic Life
Have you ever felt the disappointment of waking up, wishing you had the energy and the mental clarity to go about your day? Wondering how you will persevere through the day living it to the fullest while having epilepsy?
These feelings are more common than we can imagine for those of us with epilepsy. However, we can not give in to those feelings if we want to live our best lives. Not an easy task, for sure, but possible.
What I have found to be helpful for myself is beginning every morning with the affirmation that I won’t allow epilepsy to define me. I am not in denial that there are times I need to allow my brain to have its moment, but that’s the only time I allow it the power over my life.
Self-love and acceptance with epilepsy
One of the greatest gifts we can give ourselves is understanding and empathy when having these moments. Remembering that they are only moments – and they are only because we are unable, at times, to predict our brains' desire for control. We must give in just for that moment and then be done.
We are often too hard on ourselves, feeling embarrassed, ashamed, or like a burden to others, but we mustn’t. It is so important for our mental health to have empathy for ourselves and accept that we have no control over our diagnosis. We cannot change it, there is no cure; however, there is a cure to how we choose to view our diagnosis. It’s our attitude.
We persevere through the day to help others, not taking care of ourselves, sometimes even to the point of hiding the pain within, whether it be emotional or physical. This, my friend, does no one any good. I feel your pain, I understand your pain – emotionally and physically. You are not alone. EVER. Below are ways that help me persevere through these moments and feelings of what I call an "Icky Day."
My tips for getting through the bad days
1. Love yourself first
First and foremost, you do you! Whatever that might look like. Taking the necessary time for yourself, to gather your thoughts, your energy, mental clarity, physical strength, regardless of what it may look like, you do you with no explanation.
Take time for yourself and think about what would you need to calm your spirits. This can look very different for all of us. I have found meditation and listening to personal development and spiritual audio quickly get me in the right frame of mind. I’m often ready to take on the world shortly thereafter.
For some, it's nothing but quiet time. That’s okay!!! Give yourself permission. Trust me, from time to time, I like to do absolutely nothing but let my body and brain rest. Which is awesome in itself. I’m better for it the next day! Do you enjoy exercise, walking, being outdoors? Whatever your "YOU" time looks like, I encourage you to do it! You do you, on your terms. I promise all else can wait. This is your life, and we only have one. Let’s make the most of it each and every day.
2. Never feel guilty for focusing on you
Epilepsy is no joke, so if we don't have the current emotional support, then we must seek it. We can make the most out of this icky disease, we just have to ensure our mindset is properly balanced and not allow it to become our identity. But it first starts with you, the acceptance and perspective of how you will manage your life moving forward.
Learning how to cope and accept our epilepsy diagnosis is a gift. A gift to ourselves. Epilepsy affects us all differently, but one thing remains the same, our diagnosis and the importance of acceptance.
In order for us to be our best version, we must make ourselves a priority. This is not selfish, this is selfless. Never feel ashamed or guilty for loving yourself first and foremost. And never be afraid to say no. Be okay with letting others know: today is not a good day. No explanation needed.
3. Be your own advocate when it comes to your epilepsy care
Be your biggest self-advocate. I learned through trial and error with my own managed care, and with the blessing of my now epileptologist. Not all neurologists are experts. What doesn't feel right isn't right. I fired – with no regrets – two neurologists. It is okay to fire your care team and hire the care team that best suits you. This can look very different from patient to patient – what works for one person may not work for another.
Never assume, do your research. Ask questions. We only have one life, it's up to us to ensure we have the best-managed care possible so in return we may live our best life.
I reference often that you can put 5 doctors in front of you, tell the exact same story, and each of them have a different resolution and response. Unfortunately, that is the reality. So do your homework. While we may not currently have a cure, we can find ways to manage our condition. Find your way and never settle until you, my friend, are satisfied with the care you are receiving.
I don't believe in settling, nor should you. It is not easy, I can assure you, to advocate for yourself, however, what I can assure you of is that it is worth it.
4. Manage stress and other epilepsy triggers
Stress is one of the biggest triggers for epilepsy. It is crucial that we understand what is causing any stress within our lives and what can we do to minimize it. For me, it was ending a relationship, quitting my high-pressure job, and finalizing a divorce – which were all triggers leading to my first clonic-tonic. It wasn't easy, but necessary. Sometimes hard decisions have to be made in order to become and remain healthy.
I choose living life under my terms versus what I thought my life was "supposed to" look like. When our level of distress is too high, we may not be able to effectively handle necessary situations and need ways to bring our emotional state down.
For me, I was making all the wrong choices and then adding fuel to the fire with binge drinking. Another BIG trigger: alcohol! Alcohol, as we know, affects our sleep, which then creates our other biggest trigger of seizures: insomnia. So, as you can see, one thing leads to another when we don't acknowledge and make necessary changes to ensure our best life.
Emotionally and physically our life can quickly be turned upside down. I was making excuses for my stress, self-diagnosing myself as having anxiety, thinking it was just a period of my life (prior to my diagnosis). WRONG!! I couldn't be further from reality. I was adding fuel to the fire by ignoring my stress, making excuses, wrongfully self-diagnosing, and topped with self-medicating. For all these reasons, I needed a reality check. We must listen to our intuition – our gut – when something isn’t feeling right versus making excuses or brushing it under the carpet.
5. Show the world what epilepsy is not
Last but not least, epilepsy is not a mental illness. (I despise this negative stigma.) So don't let others make you feel as though it is. We are hard enough on ourselves, don't allow unsupportive individuals into your world. We can't change the diagnosis, but we can certainly live by example and show the world all that epilepsy is not with the hopes of minimizing the negative stigmas.
Maybe one day, just one day, we will find a cure for this incurable diagnosis. Until then, we are in this together, lifting each other up with understanding, empathy, and compassion. Stay strong my friends! Don't allow any "Icky Day" or diagnosis to define you. Live your best life through self-care each and begin every day with acceptance.
Never feel ashamed for making yourself a priority and loving ourselves, after all, is the key to living our best epileptic life. Let's not allow others to manipulate us into thinking otherwise. Take care of you!!! Make yourself a priority so that you may be the love and light so many others need. Don't allow epilepsy to become your identity. You are so much more!!!
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