Epilepsy Blog Relay: When taking it slow helps seizure control

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

Hayley’s Story

I wanted to share some thoughts about the virtue of patience and how you have to learn to develop it by the bucket-load to be able to cope when living with uncontrolled epilepsy.

Living with uncontrolled epilepsy

I have a little wooden box which my sister bought me. It’s full of little metal talismen (is that the plural of talisman?). It comes with a key-ring pouch and you pick the one which you need most every day to carry around with you to remind you to think about that virtue (strength, hope, courage, patience etc) as a coping strategy.

Changing Medications

One major element of epilepsy which requires patience is when changing medications and waiting for appointments. Nobody warns you it’s going to be loooooooooong! Even as the neurologists or nurses blithely write out your drug charts with dosage instructions when transitioning from one drug to another it never fully registers that they’ve organised the change over a period of 16 weeks! That’s a third of a year. A third of a year for potentially feeling awful (and often progressively worse as the dose increases) while you grit your teeth and try to remember that the therapeutic dose you are working towards might be the magic bullet. It’s really tough. It’s by no means unique to epilepsy but these things can’t be done any faster, so all you can do is learn to be patient.

Waiting between doctor appointments

The gaps between appointments drag horrendously as well. It doesn’t matter how much you rationalize that there isn’t any point in anyone seeing you if a medication change isn’t complete. It still feels like you are being ignored and you find yourself wanting to be pointlessly poked and prodded to see if there is something that has been missed.

My neurons, in a literal sense, go haywire if I do anything too quickly. My personality is naturally pretty intense; I’m not content unless I’m insanely productive. So, being reduced to a state where knowing the safest and most sensible way to get anything done is by moving at a snail’s pace has taken a lot of patience while I adapt.

Slow is the new fast

I am getting there, time has passed and slow has become the new fast. Getting up in the morning takes about two and a half hours; this works for me. Most of the time I can minimize my seizures this way and if they do come, I wait them out by patiently willing my brain to calm itself down. The other alternative (because patience isn’t always a practical option if I have to hurry somewhere) is to take a tranquillizer. This speeds up the calming down process for me but I’m sure you can agree it’s not really ideal.

Slow cooking wins

Cooking dinner is a slow process. Gone are the days of the Jamie Oliver meals in minutes for the stressed nine-to-fiver in our house, everything is put in the slow cooker or oven roasted. It’s safer and it minimizes the risk of burnt dinner and burnt me if I need to take time out for whatever reason. Again, with a bit of patience we still get to eat balanced meals every day.

Eco-friendly transportation

I can’t drive so I have to walk (or use public transport) which usually takes longer. It’s not the nicest in inclement weather but it’s good for me and the environment so it has it’s benefits. Being calm is one of the key elements of managing my epilepsy so I just have to remind myself what happens if I do try to (metaphorically and literally) speed up.

I wish I could honestly say the world would be better if we all slowed down but I’m not quite there in terms of believing that yet. It’s okay though, sometimes going at a slower pace can be rewarding. I didn’t chose my circumstances and I liked doing everything at pace but slowly, slowly isn’t as bad as I thought it would be.

Patience wins

The last element I’d like to touch on in terms of raising awareness is the patience which those around you need if you’re living with epilepsy. The patience to look on while we tantrum and rant about how badly things are going and how horrible we feel, while you can’t do anything to fix it. The patience to take on an extra load because we’ve started something and then realized epilepsy isn’t going to let us finish it and the patience to wait for us while we sit around looking lazy because our bodies and brains are exhausted or if we need to take a break half way through an everyday activity. My memory isn’t too badly affected yet but you might also need to learn to be patient while we struggle to get our words out or remember what we wanted to say. Unless you happen to be a nurse who specializes in chronic conditions we know you weren’t any more equipped to deal with this than we were. It’s just one of those things we’ve got to learn to work with together.

I hope this helps someone who is new to the journey, developing virtues doesn’t have to be as deep and meaningful as it sounds but reality of the situation is, unless you get really lucky, some things may take a really long time and the sooner you can learn to listen to your body the better you will fell, even if you can’t fix the seizures.

Epilepsy Blog Relay: Dad to a child with epilepsy

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

Dave is the father of an energetic, baseball(and hockey)-loving son who has refractory epilepsy. On Dave’s blog, Epilepsy Dad, he shares his experiences as Dad to a child with epilepsy in hopes that his words help other people who are on a similar journey. By sharing his story, Dave hopes to reach out to special needs families to let them know that they are not alone. Below is an excerpt from one of his latest posts:

Excerpt from Epilepsy Dad

Being a father is the most amazing experience of my life. It’s also the hardest, most fun, most frustrating, most rewarding, and scariest experiences of my life. I feel the pressure to give my son a very different childhood than I had and, most days, I feel ill-equipped to do so, but I am trying.

Adding to the challenge of just being a good father is being the father to a child with special needs. Even if there were a manual called How To Be a Good Dad, it’s the equivalent to trying to read that book in the dark. Every intention, every plan, every expectation went out the window and I had to start again looking through a very different lens.

Read the full story

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

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.

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