Part 2 of the previous blog……. Living with Epilepsy!
Your Loved Ones and Epilepsy!
I have thought a lot about this post. I don’t just sit down and type a bunch of words on a screen to make a published blog.
You see, I simply depend on prayer and Divine intervention. This topic was presented to me in my quiet time one morning, and so I have been pondering over what to say ever since.
I find this blog is hard to write because it hits close to home, my own life, my own family, co-workers, and friends.
So this is another sentimental one just like the previous one… Living with Epilepsy.
My prayer is that it will help at least one person, to me, then it will have been worth it.
I don’t know how many of you have read the previous blog… Living with Epilepsy! But if you or someone that you know has been or is affected by this disease; I sincerely pray that you will read it and pass it on to others!
I want to remind each of you as you read this, that every word is simply from my own life. Everybody is different, so please study, ask questions, talk with your doctor and family to know what is best for you.
Epilepsy is such a misunderstood disease. But please remember as I said before…..
You or your loved one simply has epilepsy, but epilepsy does not have you!
That is so very important to remember!!!
Let’s get started, shall we?
I remember the fear on my husbands face, the questions that he had that first morning when I woke up from that very first seizure. His face spoke volumes, it was written all over it. I was 19, with a toddler and a baby; neither of us had a clue what happened and we both were terrified.
There were so many questions, so many things neither of us understood. It’s normal though. I remember at the doctors’ office we had so many questions. He listened so intently. He wanted to know how to help me just as much as I wanted to know myself.
I’m sure it was really hard on him. He worked away from home as a truck driver, so he had to trust that others would help when he was away. I remember him calling often just to make sure that I was okay, and had not had any. He would always ask… “Did you take your medicine?” or “You’re not driving are you?” or “Any more seizures?” There was always a lot of concerned questions.
It’s really hard on a spouse when they watch their mate with this disease. I heard so many times, how helpless he felt because he did not know what to do during one to make it stop.
I have heard that phrase from so many in my lifetime…. the feeling of being helpless.
But the truth is, there is nothing anybody can do during one to make it stop. You simply have to make sure there is nothing near them that can cause harm, turn them on their side gently, and be there for them afterward.
I think in listening to my spouse then and my spouse now….. the biggest thing for each of them was and is…
The helpless feeling….. helpless to prevent it, helpless to stop it once it starts, helpless to make it better….. the agony of watching your spouse gurgle, shake, vomit, cry, knowing you can not take it away.
Watching as mere seconds seem like forever, praying for the monster to stop hurting the one you love.
I truly feel for spouses everywhere, I really do.
Take the time to reassure your loved one that you’re glad they are there, that together you can face this and get through it each and every day!
And thank them for being there by your side on the good days and the bad!!
But which of your loved ones, do I think it affects the most?
This part is going to break my heart to write. So please just try to be understanding. The children………….. my children……… your children!!!!
Our children did not know what was going on for a while. They were just too young, thank the Lord. My Mom would come over and stay with us for a few hours after I woke with one, and I’m sure when they were so young; the kids probably just thought Mammaw was coming to visit and play with them.
BUT……. time changed all that, sadly!
Time passed and they realized something was wrong with Mommy. I always had the seizures at night, so at least they did not see me during an actual episode for a long time. Truthfully, I don’t remember if they ever actually saw me in the midst of one.
That is one bad side effect of epilepsy, it takes away pieces of your memory.
But I do remember how sad they felt when Mommy woke not feeling well. How scared they felt when it was just me and them at home day and nights while their Daddy was on the road and I was struggling with this.
I remember how traumatized they were as 4 and 5-year-olds when Mommy would get sick, or they could not wake me, because I did have a seizure and was in that deep sleep stage afterward.
I remember all the questions they would ask sometimes. “Mommy why are you sick?” or “Mommy what’s wrong?” or “Mommy are you going to die?”
I remember teaching them at a very early age how to call Mammaw on speed dial. Epilepsy so affected my children in such sad horrible ways, especially my son, he was the oldest and I’m sure remembered the most at that age.
There are 18 months between my children, so I know he remembered much more during the early days than his younger sister did.
Can I give all of you as a parent some wise advice?
Please do NOT ever ever ever tell your child that He is the man or woman of the house while Daddy or Mommy is gone, so be a big boy or big girl and take care of your Mommy or Daddy and sister, brother. You get the idea! Don’t do it, EVER!!!!!
PLEASE DO NOT EVER PUT THAT BURDEN ON YOUR CHILD, NEITHER SON OR DAUGHTER. THEY ARE NOT MEANT TO BE THE CARETAKER, THEY ARE CHILDREN. LET THEM BE KIDS AND PLAY AND LET THE ADULTS WORRY ABOUT THE BIG THINGS.
It will so make your child’s life better and more carefree. Our son had to see a counselor at the age of six. He felt as if he had let his Daddy and Mommy and sister down because he could not make Mommy better when she was sick.
Please never do that to your child!!!
How do you help your child to begin with? Talk with them in terms they can understand. Assure them that yes Mommy or Daddy or the sister or brother may get sick sometimes, and drop and shake and be sick and sleepy for a while after, but they will be okay.
Assure them of that, make sure they know that it is not their fault. It is simply something that happens sometimes, but they will be okay.
My daughter reminded me today of when she had to call a dear friend of mine as a child when I had a seizure. Or the time as an adult when my current husband called her to come help because I had such a bad one that terrified him; how worried she still gets over them.
How we both have agreed when times come that I feel bad, I don’t get out with the grandkids, or they don’t visit because she and I both want to protect them from that fear of them seeing Nana having a seizure or even the after effects of it.
Children are the ones that break my heart, whether they are 5, 15 or 25.
Epilepsy affects not just the person that has the disease, or the spouse, or the children whether they be young or adults. But it also affects the parents, siblings and other family members.
I can’t tell you how many times in thirty years my parents have called just to check on me, how many times my Mom and first Mother in law have come to visit while the kids were little to just help, watch over them and keep an eye on me.
How many times my brother has just listened to me talk and cry when the seizures were active and I was having a hard time. How many hugs I have got from him.
All your family members that are close to you are affected by epilepsy. Take the time to thank them for being there for you.
As a parent, you hate to see your children be sick or hurt at any age. My kids are in their thirties now, and to me, it has not changed at all, they are still my kids, my babies. When your children hurt, you hurt, you want to make it better, and with a lot of things, you are just unable to do so.
That’s hard for them. So be sure to give your loved ones a hug and say thank you!!
Who else does epilepsy affect? Your friends, your Church family, your coworkers.
Remember to talk to them if you spend much time with them, and your seizures are active. I promise it is startling to them if you suddenly have a seizure and they are unaware that you even have epilepsy.
I know from experience……
Church one Sunday morning, felt great, 5 minutes later I excuse myself, and some of the ladies find me laying on the bathroom floor in a seizure. Thank the Lord one lady was a nurse, and one of my dearest friends was there, that already knew about them.
Or the coworker the time I had one on the job. All was well, fast forward a bit later, and I find myself on a cot surrounded by people after a seizure. Yes, they knew I had epilepsy, but I had not had one in quite some time, so it took me by surprise.
But I will never forget the next day when one of my coworkers came up to me and asked me ” Are you okay? Please do not ever look at me that way again, ever. It was so frightening with that look, I will never forget that. It scared me.” To this day I feel bad for her. Lord knows, I did not do it intentionally, did not even know that I had looked at her that way, oh how I still feel for her. I never meant to scare anybody. But I have learned since then that the look you sometimes have on your face before a seizure is extremely frightening to those that witness it.
So you see, you are not the only one affected by epilepsy. It affects everybody that knows you closely. Your spouse, children, parents, siblings, Church family, friends, coworkers, and on and on.
Take the time to let them know that if one should happen you will be okay, it will pass in time. Explain to them to simply move things from around you, call 911 if it does not stop soon, and just be there for you when you get past it.
But it will be okay!!!
Remember you simply have epilepsy, but epilepsy does not have you.
Your life is still important, you are a wonderful person.
You can manage this with the care of your doctor, taking preventive measures to help yourself, and being faithful in taking your medicines.
So what if we have times when we lose a few minutes, it does pass in time. So what if we take enough medicine to fill a bathtub, or have enough blood taken to make our arms feel like a pin cushion, or can’t drive for a while, or have other restrictions.
It is not forever, we all do get used to it in some ways, but most importantly we all can accept it as simply part of our lives and help our loved ones to be more at ease too. When they see you dealing with it in a positive way, they are more apt to deal with it better also.
So live your life, have fun, laugh, enjoy it, make memories and simply take care of you.
Because you and your family and loved ones are so very much worth it!!!!!!!