“I can do all things through Christ who strengthens me.” Philippians 4:13
I remember when I first shared my seizures where back. Seems like everyone went into panic mode except me. Yikes! Some had no clue I even had seizures. The most popular phrase “Whitney, move back home.” My reactions, I was angry and frustrated and just overwhelmed. No one stopped to ask how I was mentally handling it. It was more of what I NEEDED to do. Of course I appreciated the support but at that time I was in a state of disbelief and confusion. I was thrown a curve ball at a point of “reconstruction”. It was 1.overwhelming, 2. I’m going to be even more sick giving up everything I worked so hard for to go backwards and move back home to be broke and even more stressed out. Yes I would love to be surrounded by family and friends but not at the risk of walking away from my dreams and once again settling. I’m a fighter.
I just needed some time to figure out how to deal with this as an adult. When it was in my life before, I was a child and everyone else took care of me. I felt like no one was understanding that. I had to adjust for me no matter if I was in Dallas or New Orleans.
I quickly began to realize that I would have to take some safety measures if I was going to continue living my life and not let these monsters take over.The first thing of course was driving. I noticed when the second medication Topamax was added, it became EXTREMELY difficult to see at night. Doc confirmed it was a known side effect ugh! It’s only the signal lights or emergency vehicles or anything flashing. Going through the street lights gives it an effect of a strobe light, it hurts like no other. It will not send me into a seizure but will make my vision a bit blurry and hazy. So I try to keep my driving at night minimal. If I’m in the car with you and a police car goes by and you see me flinch DO NOT PANIC, I’m not having a seizure. Just avoiding the lights.
Safety in the Kitchen
One day I was cleaning the kitchen. Got down to the last of the dishes, went into an absence seizure (daydreaming), when I came out of it I looked down and realized I was bleeding. I had no clue that in the midst of the seizure I started cleaning a knife and cut myself. Never felt it or anything. Frustrated, I finished the dishes, cleaned myself up and went to bed.
Another incident, taking food out of the oven, had another spell, did not know until I came out of it, Hand was resting inside the oven and burned myself. It was not a bad burn. Thank God! At that point it was time to do some research. Went to my trusted source www.epilepsy.com and found some great safety tips. I should be wearing rubber gloves while doing dishes at least with sharp objects. Using the gloved pot holders which covers my entire hand would be ideal as well.
Safety in the Bedroom and Bathroom
I advised my doctor of the headaches I wake up with. Sometimes they wake me out of my sleep. The same headaches associated with my temporal lobe seizures. He told me seizures happening during sleep are known as Nocturnal Seizures. They occur at the different stages of sleep. With me in particular, it occurs when I’m in a light sleep. I keep pillows near my headboard and near my nightstand. While I’m not having grand mal seizures anymore, I prepare as if I would. Would hate to roll over and hit my head. Ouch!
Never take bubble baths for granted! Why? Because I can only take short ones. BEFORE I take my meds. My medication at night knocks me out! If I take it after, I run the risk of getting way too relaxed and falling asleep..in the tub. How do I know? It happened. Scary right? If it was not for my phone going crazy at that very moment who knows what would have happened. I share these things because it is my life. Not to scare anyone. I now only take showers unless someone is home with me. Or of course if one of my friends are on speakerphone talking my head off LOL!
I have shared all of these things with my doctor and he too have given me things to keep me safe. There are many resources available online that can give you insight on staying safe. These seizures will not stop me from living. The day they take over my life will be the day the enemy has won. God is on my side so defeat is not an option. No matter where I live these things are still bound to happen. I do not need a babysitter. I need to live and help others LIVE. You just have to be smart, be aware and find ways to stay safe at all times. Make the adjustments as needed.
Check out Seizure Safety for tons of safety tips! Always remember to include the docs on everything.
With Love,
Whitney
Hi Whitney,
Great blog post. I get where you’re coming from. My family had a similar reaction when mine came back a few years ago. It is so hard for our loved-ones to think from our point of view sometimes, even though they have our best interests in mind. It can be so frustrating!
Great safety advice, too. Must have been scary to have them when baking!
Good luck to you, God Bless.
Thanks Gina! Of course we start to question if we are being selfish. I had to remind myself it’s okay to have feelings as well about the epilepsy. But we all around care about each other’s feelings. And yes the cooking things are super scary! But I’m getting better at this safety 🙂
Good luck to you as well! Thanks again!
Thanks Whitney for this valuable info, some of which I never thought about in my son’s safety especially as he’s been trying to do more in the kitchen. I want him to have some independence, so I will make sure the proper things are available for him!
You are so welcome. Having some independence is a big thing because then you know it has not taken over or stopped him. But we know you will keep him safe at all cost as well 🙂
Thanks for this. Lots of fantastic information for me, who is new to epilepsy. I love taking bubble baths, but have noticed that I have not lately, I wonder if it has been a warning Blessing that I have not. I now know to sleep with pillows around me since my seizures happen at night. Thank you so much for this. You are a Blessing. Lots of love, Lisa
That has been my reason for opening up…I knew one day i could help some one.. I use the pillow by headboard and nightstand just so I don’t hit the edges..I fell off blogging but you have inspired to make a come back …thank you 🙂
With Love,
Whit