Epilepsy Blog Relay: To my caregiver, in sickness and in health

This post is part of the Epilepsy Blog Relay™. Follow along all month!

“Who knew that when we said for better or for worse, it would be worse but for the better.” – Jean-Paul Bedard

Shonet’s Story

“I take you to be my partner. I promise to be true to you, in good times and in bad, in sickness and in health, I will love you and honour you all the days of my life.” For those of us who are married, these vows are quite familiar. In fact, we often exchange them without really thinking about what they truly mean.

Ten years ago, my husband and I did the same. Little did we know, we would have to literally live out the hardest part of them in our lifetime.

So let’s flashback to 2012, when our seizure journey began…and I say “our” because illness of any kind (especially chronic illness) not only affects the person going through it, but their caregivers as well. It was about three years into our marriage and eleven years into our dating life (yes, I know, we were babies ;-p). What had started as a normal evening, which ended with us in the ER and doctors running all kinds of tests on me.

On Driving

In an instant our lives changed forever and the first blow was my license suspension. Now, I know that seems like a small piece of this puzzle we had found ourselves in, but driving for me meant so much more than just getting from A to B. It meant independence and freedom, and not being able to do that, limited me in so many ways. So now my husband had to take on that role (which he loves to do by the way!) and drive me around everywhere. I struggled with that for a long time as I had never felt so dependent on someone, especially after working so long to grow up and actually be independent. Sometimes we joke that he is my personal uber driver ;-).

As time went on, he took on so much more than just driving me around. He became my walking, talking medication reminder, who came with me to all my doctor’s appointments and even kept my personal seizure diary updated. There isn’t a day that goes by without me hearing “Did you take your medication yet?” He is the only one who recognizes when I have a seizure or am having an unsettling day. He tolerates all the emotional ups and downs that come with seizure medication; irritation, anger, sadness, etc. (Kepprage, as some of my fellow epi friends might know). If I am too fatigued, he makes sure our life clocks on as normal; even if it is after a long day at work. He often sacrifices his own sleep, so I can sleep better. This was especially true when we had our daughter. I am probably one of the few moms who can say I slept beautifully after I had my baby because guess who did the night feedings, Dad! And he went to work in the day too! He alters his schedule to make sure he can drive our daughter to and from school, to doctors’ appointments, to weekend activities and more. He takes the time to help out with all the household chores and even backs me up in supporting my own family.

Over the last few years, as I have worked through my illness and career goals, he has joined me on the ride as a calm presence, always making sure he is there to catch me if I fall. In spite of having all of this on his plate, he never fails to make us feel special, whether it’s a birthday, anniversary or a personal accomplishment. I always cherish the card and bounty chocolate I get any time we celebrate a special occasion! He is the best Dad and husband, and looks after us even more than he looks after himself (the latter of which I have to literally impose on him and remind him of on a regular basis). And while some people would say these are just normal things partners should do for each other, I think in situations of illness and disorders, caregivers go above and beyond than what is normal, so we don’t feel the pain we go through. Several people have told me that I am lucky to have a partner that has stayed by my side even after my diagnosis; apparently it’s not always the case. And although we don’t think of it that way and I would do exactly the same for him, over time I have learned to be grateful for him. Through all our struggles with coming to terms with my diagnosis and finding our new normal, I think we have found a new appreciation for each other that is beyond what we would have experienced if it were not for epilepsy.

Ten years and counting

So as we celebrate our 10 year anniversary this year, I wanted to dedicate this post to my personal care”giver” and say “I, take you Rex to be my husband all over again. I thank you for being true to your promise and for loving me in good times and especially in bad, through my sickness and when I was in good health. I’m gonna love you forever….forever and ever, Amen. Happy Anniversary and happy Father’s Day.”

For all of us that have partners, parents, kids, siblings, family, friends, who are like family that look after us, we need to always remember that they are true warriors who watch over us every single day. And as we continue to spread our message about epilepsy in all its glory, let’s not forget to care for our care”givers” and celebrate them too.

NEXT UP: Be sure to check out the next post tomorrow at www.epilepsydad.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Epilepsy in the Outback

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Billee’s Story

Hello everybody, my name is Billee. This is my first attempt at writing a blog, so bear with me. I grew up in a small mining town in the Western Australia Pilbara. The Outback. I was diagnosed with epilepsy at the age of four.

Diagnosed with epilepsy

My mum and I were holding hands walking down the road, when I went limp, collapsed and had my first seizure. Now, because we lived in such a small town and there was a lack of medical practitioners, I was asked to blow up balloons. It wasn’t until many years later that I realized, I was blowing up balloons to gauge and effectively induce seizures.

Medication side effects

The medication started at the age of five. Epilem (sodium valproate) was one of the more effective medications, but after a while my hair started to fall out and my gums started to bleed. At the time, it was the only thing stopping my seizures. So, I became the “sick kid” of the town. If that wasn’t enough, I was short, chubby, balding, had bad teeth, asthma and the name Billee. Needless to say, I was bullied.

It is suspected that stress and overexertion caused many of my seizures. I was not the favourite in my faction when it came to school carnivals. In fact, when swimming the 40 meter breaststroke for my faction carnival, I had to stop halfway and get out of the pool. It wasn’t until many years later I got recollections of the sighs when I got called up to compete. At the age of 13, I moved to the city with my Mum and sisters. We weren’t there long before moving back to the Outback. When I left for the city I was short, chubby and would drop at the slightest jog. When I returned, I was tall, blonde and could run as fast as the wind. I won my first running race that year.

After a while I moved back to the city and have since been somewhat of a guinea pig for many medications. Some that make me tired, some that keep me awake. Some that make my guts churn, and others that stop my bowel movements. Finally, I found one that works with minimal side effects…or so I thought.

A surprising side effect

I have been taking Lamotrigine for a few years now. More specifically, Lamictal. It works great, except, I have lost my short term memory. Which in turn, is stopping me from making new memories. I seldom remember what I did yesterday or even an hour ago. Does anybody else have this issue? If so, can you please help me? I do crosswords and try riddles. It’s hard for me to read books because I’m constantly rereading.

Recently I was lucky enough to be able to go on a tour around Europe for a month. The downside is, if it wasn’t for the photographs, I wouldn’t remember majority of the trip. The silver lining is things can be a surprise more than once.

It would be great to make new memories and keep them. I will always remember that running race though, and still to this day, I steer clear of balloons.

NEXT UP: Be sure to check out the next post at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Epilepsy Blog Relay: A New Mom with Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Abby on becoming a new mom

My Prior to having my baby girl, Emma, I had many conversations with my neurologist.

After the baby arrives

I was shocked when he seemed more concerned about my health after the baby was born than during my pregnancy.  He was monitoring my levels very carefully during the entire pregnancy, but when I would meet with him, he would always ask me about my plan for after the baby came.

At that point, I really had not thought that far ahead.  Because my pregnancy was so incredibly difficult, I really was focused on just getting through each day.  Each time I visited the doctor, I would give my husband and my mom (the two people who know everything) an update.  There was always a recurring theme of every doctor’s visit.  What is the plan for after?  Are you getting a night nurse? Will you have help?  How will you ensure you are getting enough sleep?

Related: Epilepsy Blog Relay: Epilepsy and Pregnancy – what to expect

Finally, we made the decision as a family and came up with a plan for my mom to come stay for the first four weeks after Emma was born.  As the saying goes, nothing ever goes according to plan.  And, of course, this didn’t either.

Emma made her surprise arrival November 18, 2019, four and a half weeks early.  She was healthy and happy, but the hard work was about to begin.

Let the feedings commence

Because Emma was so early (and I was bottle feeding because I DID NOT want my medicine passed on to her for any longer than it needed to be), we had to feed her every two hours.  It was unbelievably hard, and there were no breaks.  As soon as we finished one feeding, it was time to start the process all over again.

Our story is not unique.  I think most people need help when they have a baby.  But, don’t be afraid to ask for it.  When you have a newborn at the house, it is especially difficult to sleep, but do not be afraid to take care of yourself too.  Having a seizure and being out of the game for two to three days is going to be way more difficult than taking that extra two to three hours for a nap while getting a little help from a family member or friend.

Thank you, Mom

Last, but not least, thank you to my mom.  Every single night for six weeks she was on duty for half the night, except for a couple nights here and there, where we called in even more help!

And best of all, we made it through the newborn stage seizure free!

NEXT UP: Be sure to check out the next post at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

Epilepsy Blog Relay: The impact of an epilepsy diagnosis

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Maxine’s Story

I was diagnosed with epilepsy when I was 14 years old. My seizures were tonic-clonic (grand mal) and I was having up to 2 seizures a month.

Because of my diagnosis, my life was changed forever. I missed all the great things that a young woman of my age should have enjoyed. A lot of this due to the sentiment toward people with epilepsy at the time.

I had my first baby at 21 years and was told that I could not bring up my baby and was not able to be a mother. All I wanted was to be a mother and have someone to love.

Stigma and an Epilepsy Diagnosis

I was then placed in Kingseat Hospital and told I was mad due to my epilepsy. I was very frustrated and angry, yes, as no one wanted to listen or hear me, but definitely not mad. At the time, one doctor told me that I should not be allowed to have children. He said, in his country I would have had my cords cut and tied whether I liked to or not.

I had my second baby in 1984, and I certainly had become older and wiser. But, I still have epilepsy so by children were educated about it as they grew up. Then, in 1993, my husband died in a drowning accident and I was left to bring up my children on my own.

I had no drivers license due to my epilepsy and so would need to hitchhike to work just to put food on the table. Then, In 1998, I had a serious accident where I burnt myself in boiling water due to have seizure. This caused 3rd degree burns to 50% of my body putting me in hospital for the next 6 months. Luckily my children and I had the great support of family and friends.
I lost my license many times due to having a seizure and that meant I lost my job. The list of how epilepsy has affected my life could go on and on.

Even still my attitude has always has been, where there is a will, there is a way.

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I am now 64 and my life skills are enormous but I am still fighting to be considered for my valuable skills and experience for a position in the work place other then a support worker.
I have lived in poverty all my life due to my disability and have to say I am used to it but now I am reaching retirement age I am finding it very scary. I work in domestic violence now and although I like my job I can only seem to get the lowest paid. Yet, I have not had a seizure since 2004.

Over the years I have worked so hard to make up for the lost moments. I am now full time working but still looking for that special job that I may be able to give back to my community.

NEXT UP: Be sure to check out the next post at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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