Having epilepsy is like putting a person on their dream vacation, which is in the sun on a beach, while they have a reoccurring heat stroke and a severe sun burn.
Let me explain. Epilepsy does not necessarily mean you are not blessed (on vacation). I have epilepsy and often look at my life and just think of how greatly blessed I am. With loving and amazing family and friends, constant things in life I am intrigued by and a life set up with a great balance of accomplishments or comforts and future goals and dreams. It’s definitely not perfect but I am so lucky to have the life I have. However…
Having epilepsy can limit your ability to do almost everything. The heat stroke is like the after math of having a single seizure. Lasts 1-2 days. For the rest of the day or even longer you can be tired, confused and normally quite emotionally upset. Not completely, but I have had a single seizure ruin some days that were supposed to be pretty amazing. The sun burn is like the consequences of my epilepsy that adds up over time until it can be unbearable to go into the sun. It’s the emotional toll such as the PTSD from all the embarrassments and struggles its brought or constant disappointments and loss of hope. It adds up over time until you cant avoid it being there. Sometimes it hurts so bad that it is all that is on your mind like a sun burn. The difference is that often my epilepsy/ heat stoke and sunburn were unavoidable because I did everything in my power to prevent them. My medication is like ineffective sunscreen that constantly causes me to burn. However..
You’re on vacation. It honestly feels like you are sitting there on vacation but unable to fully and properly enjoy it. It can be absolute torture. Sometimes the most frustrating and upsetting part is not the fact that you had a seizure but how the seizure and your epilepsy gets in the way of you enjoying your life to its fullest. I constantly think how amazing my life could be if my epilepsy didn’t get in the way. Its like I recognize how lucky I am but struggle to take advantage of it as much as I can. You watch everyone else enjoy their vacation as you lay there in pain.
The question is; would I rather be at home, in the freezing cold with no sun burn or heat stroke? The answer is; of course not! Yes, neither are a comfortable experience. But, the heat stoke will go away in a couple days and the sun burn will ease off. Then its time you can try again to experience its glory. I recognize I may have to take it easy for a couple days and stay out of the sun for a bit/ be safe. But I also recognize I am still on vacation, or other wise; I recognize I still have an absolutely amazing life. I would not trade my amazing life with epilepsy for a different life without epilepsy. When you’re on vacation you always try to take advantage of every possible day or opportunity you can regardless of your barriers. You got to treat every day like your on vacation. Maybe you have to take it easy for a day. Doesn’t mean you aren’t surrounded by amazing views and your travel partner’s company. Maybe you get to just listen to your loved one’s beach or life stories. Still better than being at home. Sometimes its about being flexible and simply making the best. Dont waste the opportunity to have an amazing time. You have probably put a lot of your time and effort into it so you deserve to experience its greatnesses.