5 Mar 2019

Epilepsy Blog Relay: That one time where it’s okay to be a helicopter parent

by | posted in: Mar 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Jen’s Story

“Time to Build Castles” is taken from an Irish proverb, “It takes time to build castles.” For me, it means that nothing great can happen instantly. It takes time, planning, careful preparations, and even mistakes. I took this for my blog because when you’re raising a child with disabilities, it’s important not to get caught up in the speed at which things are happening around you. We started slow and are building a solid foundation!

Being a helicopter parent

I may be wrong, but I think by the time your child turns 7, they can likely sit and play by themselves with a parent nearby. They can take supervised baths and generally not have to worry. But, I have an admission: I’ve become a helicopter parent. Maybe not in quite the same way that it is defined by society, but, it’s something I have to be. Otherwise, Colleen could get seriously injured. Between where she is developmentally and with epilepsy, there’s just no question about leaving Colleen alone at any time. It just cannot be done.

Over Christmas break, Colleen came down with the flu. This made her myoclonic jerks a lot worse and also brought bath safety to the forefront. When she was younger, she had a lot less so I could sit beside the tub and she’d happily play and splash. That all changed when she had increased daily myoclonic jerks. Sitting next to the tub just isn’t close enough, even though I’m right there. Over the fall, as she was in the bath, she had a jerk and her head dropped into the water. It was an instant and even though I was right there, I felt like I couldn’t move fast enough. She was thankfully okay, but I was so afraid of her aspirating water. So, now my fear and anxiety have me in with her.

Life with Colleen

With Colleen, we know when she needs things, like when we got her wheelchair and her posterior walker. But, then there are situations like with the bath where we didn’t know we needed something until a situation happened. When her service coordinator stops by, one of the things we go over is things Colleen would need that would make like easier. Things like lifts, ramps, accessibility options. I brought up the bath concern with the coordinator, and now we are looking at bath seats that would be used. I feel bad that a lot of the fun things she enjoys would be hindered, but I know she will still be able to still splash and play, and momma won’t have a heart attack!

Her daily life is constantly evolving. There are times when I think we won’t need a lot because she is very capable and getting stronger. But now I’m realizing more and more that there could be possible setbacks, and things, like the shower chair, would be such a help. As her mom, I have to remain constantly vigilant against the things Colleen could get hurt on, knowing most of her capabilities and her understanding of her surroundings. But, as a parent, I don’t think there’s ever a time where I won’t worry. I do think in this case, and with other parents of children with disabilities, it’s perfectly okay to be a helicopter parent! (Unless, of course, there’s a better word!)

NEXT UP: Be sure to check out the next post by Beth at anthrosuit.blogspot.com/ for more on epilepsy awareness. (for a quick summary you can visit livingwellwithepilepsy.com) You can check out any of the Epilepsy Blog Relay posts you may have missed.

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4 Mar 2019

Epilepsy Blog Relay: A system of support

by | posted in: Mar 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Soo Ihm has lived with epilepsy since childhood. Now in southern California, she writes the blog Soo’s Epilepsy Corner and is an advocate for epilepsy awareness. She enjoys playing the piano, going to art museums, and learning foreign languages, among other things.

About My Blog:

Soo’s Epilepsy Corner is a place to discuss issues related to epilepsy. I want to share my experiences living with epilepsy as well as provide access to reliable resources for people with epilepsy and their families and caregivers.

A System of Support

I feel very lucky to be where I am in life today. Epilepsy is a hindrance that I have to deal with every day. The seizures persist despite the various treatments I have tried. However, I have a family, a doctor, and epilepsy support/advocacy group I can depend on. This is a great comfort, and I know that no matter what happens, they will always be there to help.

A stable system of support is vital for people with epilepsy. Without it, life would be much more difficult and perhaps people with epilepsy would still be locked up in institutions or worse yet, killed for having a condition they cannot control.

It is thanks to the activists—families, doctors, research organizations, and advocacy/support groups—that people with epilepsy have come out from the shadows and are integrating into society. I myself have always been fortunate to have this kind of support. Even though my seizures are not under control, my doctors tried and are continuing to try anything and everything they can to reach the goal of seizure freedom. Also, I have been lucky to have access to support groups for people with epilepsy. These organizations help educate as well as provide an outlet to connect with others in similar situations. Finally, my family has been my pillar of strength, comforting me when times were difficult.

Doctors

I believe in general that all doctors always want the best for their patients. That is the case with me. I’ve been on more medications than I can count, trying many different cocktails that always left me with severe side effects. At one time, I was taking five medications. Now I’m on four (not much of an improvement, but at least the side effects aren’t bad). I am a tough case to crack, and it is thanks to my epileptologist who thinks outside the box, that perhaps I may get find a treatment that will work for me. With all the new technology and developments in treatments for epilepsy, the possibilities are there.

Support Groups

Support groups for people with epilepsy are extremely helpful if you live with this condition. I have first hand experience. When I lived in Missouri, as a college student, there was an epilepsy support group run by the local independent living center, of which I later became a board member. The group was a nice place to share our experiences with epilepsy and talk about our challenges and successes. The nice thing about that organization was that they provided free transportation to and from the meetings, an issue many with epilepsy face.

Community Resources

When I moved to Southern California, I was amazed at the resources that were available! The Epilepsy Foundation located in Los Angeles provides a monthly support group meeting as well as periodic informational seminars and other interesting events. I attend their “Walk to End Epilepsy,” their annual fundraiser at the Rose Bowl in Pasadena, CA.

The Epilepsy Support Network of Orange County (ESNOC) is the go-to place for any epilepsy-related information in southern California. They serve 32,000 families in Orange County. When I first arrived, I did not know what doctor to go to, so they were the perfect resource to consult with. The Epilepsy Support Network, as the name implies, is a place of support for people with epilepsy and their families. The monthly meetings, which I attend, are very helpful since you get to connect with others who are in a similar situation.

There is also another mission of the ESNOC: education. For first-timers or people who want a refresher, there is always a Seizure First Aid 101 before the main meeting starts. At the meeting, there is usually a doctor or nurse, speaking about an epilepsy-related topic. I find these talks most helpful since we learn what is new in the world of epilepsy treatments, including devices, medications, diets, and surgeries, not to mention CBD. I think the best monthly meeting is in November for the “Talk to the Docs” program. That is when all the doctors get together for a panel discussion and afterward, we are all able to visit with them individually to discuss any personal questions we may have.

The founder and Executive Director, Janna Moore, is an amazing and dedicated person to this cause. Since her daughter has epilepsy, she has been fighting for her and all the others who suffer from seizures, in hopes that one day we will find a cure.

Family and friends

Finally, my family has been my strength of support. They have (almost) always been there when I needed them. (One time I was at home and my mother was out doing errands and at the time I was taking Vimpat and it made me extremely anxious and depressed. I couldn’t help but cry my eyes out and I wanted her to hold and comfort me, but alas, she was not there, physically.)

My family has supported me in everything I have ever done. I learned how to ride a bike and went swimming when I was a child. When I was a teenager, epilepsy was coming out of the shadows. I found information from the Epilepsy Foundation and mailed them a letter requesting brochures about it. I declared to my parents that from then on, I would call my condition “epilepsy” and would not hide it any longer. Surprisingly, they responded positively, without hesitation. It is this kind of support that I hope all people with epilepsy can have.

http://esnoc.org/
https://endepilepsy.org/greaterlosangeles/

NEXT UP: Be sure to check out the next post by Jennifer 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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3 Mar 2019

Epilepsy Blog Relay: Searching for my passion – my quarter life crisis

by | posted in: Mar 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Emily’s Story

January was a hard month. I went into the New Year with a very open mind. ‘2019 will be the one ‘ I said. Dan and I moved into our house in December, our wedding day is 24th February 2019. It felt good. I had this positive feeling, a glowing one. It will be the year I make time to do what I love.

Quarter-life Crisis

But you know how it is sometimes. Things happen, you have days where things get too much and some people think you just deal with things ‘wrong’ and you’re ‘too sensitive’ or you ‘expect too much.’ I have a high expectation for things and if things go slightly wrong I do beat myself up over it, but we are all different aren’t we? How many days do you wake up feeling like your life is on repeat? You wake up to your alarm, brush your teeth, take a shower, drink your tea or coffee, go to work, come home, eat dinner, watch TV if you have time, go to bed, and repeat.

I am known by blogging friends and readers as the one who helped set up a support group but I feel I live a fairly ‘ordinary’ life. I work, I own a house, and I try to get on with life as an Epileptic in the most normal way possible. But, I do struggle to keep everything together when it feels like I’m not actually doing anything, going nowhere, and living some life I do feel disconnected from. I have some very close friends, I have a loving family and Dan is fantastic, but I still feel misunderstood.

If I could stand in front of the whole population of this entire planet and beyond, and stress to them what life is really like with a medical condition, I honestly would. If there is some way I can express to everyone how it feels, I would jump for that opportunity. The opportunity to help people understand, to allow me and the other millions of people around the globe be heard.

But I guess for now I will stick to my writing until I get that opportunity.

I am a very outgoing individual, my passion is CHANGE. I want to be the change in the world of stigma. I want people to understand what it is like ‘Living the Purple life’ as I call it. Writing for Living Well with Epilepsy is a huge passion of mine and it has been since I first started. It is 7 years this year since I gained the title of a ‘Writer’, and it is all I have ever wanted to do.

I have learned that your passion doesn’t always have to be your career, but something that you do in your spare time to keep you happy.

Start now, start small

If you’re truly passionate about something, you need to get started now. Don’t put things off. It doesn’t mean you have to quit your job; I work full time but make sure I give myself a bit of time each day to dedicate to writing. If you’re truly passionate, you need to carve out some regular time to do what you love.

The key to following your passion is consistency. Maybe you have always wanted to be a dancer? That doesn’t mean you need to go out and buy all the equipment and expensive tap shoes–maybe look online, do some practice at home, or speak to a friend who maybe does dance. Do some steps at home and then pay for classes if you want to take it further. 15 minutes every day of some warm-ups to get you into the groove. It’s these small steps, done regularly, which will add up to huge results.

Same with photography: don’t go out and spend thousands of pounds on equipment. Start with your camera phone or a cheap camera to see how you feel. Buy some books or take a look on the internet for ideas first.

I am still searching for ways to enjoy the things I am passionate about and you know what holds me back the most? Time. I don’t make time for myself, my weekends are full of yes things I want to do like meeting friends, going out with Dan, seeing family. But I don’t give myself time to practice piano, take photos, write as much, and go walking.

Leave space in your schedule

A completely full schedule can make you feel stuck and unable to follow your dreams. Ask yourself, do you really need to do everything in your schedule? We often take on commitments that we don’t really need to do, and we continue to do them out of habit or guilt. Look back over your schedule from the past month. My calendar is full, every hour of the day is packed with meeting people, going out, wedding things that I could quite easily ask Dan to do but I don’t want to fill his days up, so out of guilt, I do them! Look in your diary–What items are you really excited about doing and love to do? Those can stay. Everything else should be scrutinised. Do you really have to do this task or can it be delegated (like my wedding jobs)? Is there a way you can do it faster, ask for help, or do it less often? Eliminating even one or two unnecessary activities per month can free up the time to follow your passion.

What is your passion and does it help your life living with epilepsy?

Writing and Photography help me a lot. SO let’s make time to do them!

NEXT UP: Be sure to check out the next post by Soo 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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2 Mar 2019

Epilepsy Blog Relay: Creative ways to raise epilepsy awareness

by | posted in: About Epilepsy, Mar 19 EBR Posts, Personal Epilepsy Stories | 0

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Shonet’s Story

It was a crisp fall evening when I heard the doorbell ring. Thinking it was an early ‘home from school’ surprise from my daughter, I ran up to the door to get my usual squeal and tight hug. Instead I was greeted by a young, energetic teenager talking to me about a donation program for girls. Being #thedayofthegirl and my passion around gender and equality, I was all ears. [Especially, when he asked me to confirm if I am 21…why thank you, tell me more ;-)]

As we discussed the program, we got talking about how I spend my time these days. I mentioned the work I do around epilepsy awareness to which he uneasily said, “Oh, is that the thing with the lights?” While he was somewhat right, I found his answer to be quite interesting. But, I also understood how he could be unsure about what epilepsy was.

Why is there a need to raise epilepsy awareness

In reality, most people are not aware of an illness until it touches them personally. Given that epilepsy is not a disease that people disclose very readily, it stands to reason that the majority of our population would not know how many people are impacted by it. 1 in 100 people in Canada, just in case you were wondering. In the US, approximately 3.4 Million people are living with epilepsy and worldwide, well that number is estimated to be 1% of the population.

Information is power

So I jumped at the opportunity to educate him about it and did a whole information session! He was amazed by all there was to it, thanked me for my openness in sharing my experience and went on his merry way feeling more empowered. That interaction got me thinking about how we can use creative ways to spread the word about epilepsy and in turn help people understand epilepsy better.

Share your story

The biggest way I raise epilepsy awareness is by talking about it and by sharing my story. I am an open book as a person. What you see is what you get. So, it probably comes more naturally to me, than to someone who is more private. Whether it comes easy or not, there’s no denying that people love stories and what better way than to tell your own! Talk to your family, your friends, your co-workers, your neighbours or sometimes even strangers, like I did in my experience above. It will be a great emotional outlet for you and leave them with something to think about and share forward.

Share your story

 

Share your time

Another way is by volunteering with my local epilepsy non-profit. These organizations have several programs that support fellow epileptics, from social interaction/recreation groups to entertainment events and new initiatives that reach out to the public and educate them about epilepsy. Think about how your skills might contribute toward the cause and help them to further their message. You not only work towards a common cause and help the community, but you also welcome support, make connections and enhance your own skills.

I think about activities I like doing and try to incorporate ways of highlighting epilepsy within those aspects of my life. Whether it’s spending time with my daughter and painting a pumpkin purple or showcasing the book I am reading to de-stress, anything goes. So give a thought to the many interests you have and how epilepsy can play a role in some way. It fulfills your passion, initiates conversation and indirectly gets the word out.

 

Spread the word online

It goes without saying in this day and age that social media platforms are a given. I use every avenue I have, to get my message out there. I try to participate in online challenges/initiatives and promote them the best I can. I connect with people online who share the same interests as me and discuss how we can help the community move things forward.
And the last one couldn’t be more obvious; it’s what I am doing right now! I write about my story and experiences with epilepsy through blogs and articles and share them with the world. I have always enjoyed reading and writing but blogging has never been something I have done before. Over the last year, in my attempts to get the word out, I decided to make the leap. I guess my education in English Literature finally paid off 😉

 

Your turn

So there you go, that’s how I spread awareness in my own way. If you have any new ideas about raising epilepsy awareness, I would love to hear them as well. After all, there is always strength in numbers and our collective efforts will give power to more voices that need to be heard.

So if you are ready, go ahead, share your story, the world is waiting to hear it!

NEXT UP: Be sure to check out the next post by Emily 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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