I often reflect back on times in which I would say to my family that they just don’t understand what I was going through because they were not living my condition. They were not walking the road I walked. I am certain many of us living with epilepsy do say this to those we love and care about the most. Out of frustration and hurt unintentionally. It simply because I wish they could understand and others they genuinely don’t come across as caring.
Wonderfully, there is so much that loved ones can learn from someone living with epilepsy than just to prevail. While taking a few moments to enjoy the quiet evening after a busy day I reflected on this very thought.
Here are a few things all loved ones can learn from someone living with epilepsy:
- Help. When you live with epilepsy, your daily life might very well depend on the support and the help of your spouse, and/or family. Without them we could possibly be risking danger. Those of us unable to drive cars, wouldn’t be able to get to where we needed to go (neurologist appointments, chemists etc.) Unfortunately, along the way of getting well, we somehow lose the desire of wanting to accept any sort of help. Accepting help becomes a sort of frustration. I also don’t like asking for help as I feel like I am inconvenience.
- Always Say I Love You. When you live with epilepsy, every single second instantly becomes precious. Every second. You know it in your heart. Never ever miss a moment to tell those you care for the most that you love them all the time. Even if they already know it. Those three words couldn’t be more special. More valuable. More precious than anything in this world. It’s nice to hear others say it to me too.
- Be On Time. When living with epilepsy, the alarm goes off, the medicine goes down. For some, this could be one time a day, two times a day, or multiple times a day. Late on a dose, you’re gambling a seizure. Miss a dose, risk a seizure. It’s vital to be on time. Every time. Every day. For me it’s twice a day. I take a soluble medication and due to my poor memory, caused by epilepsy and the medication I have been known to have it dissolving and then rush out and forget to take it. Having family to remind me on a morning is helpful.
- Smile. When living with epilepsy, it’s not always the easiest thing to do but we do it anyhow. We smile. Smile because we believe in better days. We hope for better days. We have faith for it and we yearn for it.
- Hugs. So often a hug can just make people feel better on a day when I am struggling with myoclonic jerks. An honest hug. Hugs are the best show of love to those you love. If they’re a good friend, lay down the handshake and give a hug.
- Live A Dream. Just because you have epilepsy, doesn’t mean epilepsy has to hold you back from living the kind of dreams that you want to live. Think of the many actors, musicians and athletes past and present with epilepsy who defied their diagnosis and pursued their dreams., it’s important to have dreams and goals. It’s important to pursue them in a healthy fashion. I have personally achieved some great things and had some amazing experiences. , There have been challenges along the way, however I persevered to achieve what I wanted to.
At the end of the day, it’s about putting the brakes on and trying not to worry about things you can’t change. We don’t have the power to control or predict it, so lets just live it to the best of our ability. With support from loved ones and friends we can achieve anything.
There are so many myths regarding epilepsy. Have a look at this Fact and Fiction post to learn a little bit more about epilepsy.
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Really valuable information as a parent of children with Epilepsy it’s nice to hear from someone experiencing Epilesy themselves.
Really great post, lots of people who suffer themselves will appreciate you sharing this insight.
Every word here is true to the heart. I’m a father,i have a dedicated partner too, essential to My life and My life with epilepsy. My epilepsy is a little complex, I suffer from memory loss, not allowed to drive etc, but I’m proud of being epileptic and showing deviance to the condition, plus educating people about it is a way of moving forward. Well done with the article!