4 ways to manage exhaustion

Shonet’s Story

‘Always’ ‘Tired’. That’s a tattoo the artist, Post Malone recently added to his ever increasing collection of tattoos. Although it didn’t mean anything to him and he did it on a whim, the first thought that came to my mind was “hey I should get a tattoo like that, it would be funny”; only because I related to it so much.  [Disclaimer: Joking about my disorder keeps me sane and helps me not take it so seriously 🙂 ].

People that have epilepsy or a seizure disorder tend to show more signs of fatigue than those who do not have epilepsy or a seizure disorder.1 I remember the time when my then 3 year old said “I am so tired” with a sigh; I had mixed emotions about it. On the one hand, I felt happy to know that she was able to express how she felt appropriately at that age, but on the other hand, I was sad that she had learned what it meant at such an early age. It also made me realize that I probably say it so often, it had become part of her vocabulary.

Mommy on my own

There was another time when my husband took a much needed boys trip for a few days and I had to manage a toddler and run the house by myself. Now this might be just normal life for some people, but for me it is a bit of a challenge, especially since I am not in that situation often. Those of you who have kids will understand the perils of this and for those that are single parents, I salute you! After a few days of being on my own with my toddler, I unconsciously blurted out “Oh I am so tired,” to which the little monster disappointedly said, “But Daddy never gets tired Mama.”

As she said this, I could feel the tears just welling up in my eyes; for so many reasons. I felt sad that I have epilepsy and got tired so quickly, I felt sad that my daughter had to feel that way and I felt like I had failed her as a parent. But like various other situations, I held myself together and said “Yes I know love but Dada doesn’t have epilepsy and I do, so I get more tired.” She understood what that meant, as much as a 4 year old can anyway. I do talk to her quite regularly about the fact that I have epilepsy, so she is aware and gets it. I need her to know, so that when she is with me, if something happens, she does not freak out and can call for help.


Related: 5 year old Riley explains epilepsy first aid


I have plenty more examples of epilepsy and fatigue, but what I really want to share is how I try to actively avoid getting to the point of fatigue on an everyday basis:

Try limiting social outings a bit

The first thing I do is plan less social events and outings. Before we used to be go-go-go all the time, but now I schedule just one social event every weekend and that does the trick. This helps me rest and recuperate before the week starts. Now let’s be honest, there are times I am forced to make an exception, at which time I prepare myself for what’s going to happen the day after. Basically major fatigue which means hours of sleeping in, body ache, muscle tightness, and inability to do any focused tasks. I just eat, drink water and rest, so I am well the next day. And these days are what Netflix is for!! This fatigue is similar to what one would go through after a seizure, but that would last a couple days. So we have managed to keep this ‘one event’ rule going pretty well so we can transition onto the next thing on our ‘to do’ list. Interestingly enough, doing this has also helped me improve my ability to say ‘No’. It is something most of us struggle with, so in a way I am happy I have somewhat won that battle!

Be realistic about to do lists

Speaking of ‘to do’ lists, I assess each task on my list by the time and effort it will take, based on which I set up my plan for each day. While a normal person might take 2 hours to clean out their closet, I might take 4, or sometimes even the whole day. And at the end of that day, I might still be a bit tired but likely not fatigued. This also applies to tasks that require major mental focus. Those often result in a headache or tiredness if I don’t limit my time on said task. Of course this doesn’t always go as planned, but for the most part, it works for me.

Vitamins and exercise (yep, old school)

Another thing I try to do is take my vitamins on a daily basis. Many neurologists encourage women of child bearing age to take folic acid. You may also want to check with your neurologist to see if you should be taking vitamin D. In addition, eating well and getting some form of physical activity is also an important way to keep my body from shutting down. A bit of an irony, but it works as long as you keep the physical strain in limits.

A little quiet time

This one is not only important for those of us with epilepsy, but also for others who do not have this disorder. We all know as parents how difficult it is to get a little moment to yourself, so doing anything you can to get this in would be good. Besides locking yourself in the bathroom of course, because we all know how well that works ;-). Personally, I take some time to myself before going to bed to clear my mind, read and relax. It just helps me unwind and forget about all the things on my ‘to do’ list. I also make sure I get regular massages to ease my muscles.

So now when I hear “Why are you so tired today? We barely did anything” (and I hear it often enough!), I remind people of the fact that epilepsy and fatigue go hand in hand, which they don’t often realize. They are two sides of the same coin and we just have to learn how to deal with it in any which way we can. These tips help me and I hope they help you. Just remember, you cannot pour from an empty cup, so breathe, rest, relax and focus on what’s important for you to be at peace.

Now your turn: Share how you manage your fatigue


  1. Fatigue in epilepsy: A systematic review and meta-analysis – https://www.sciencedirect.com/science/article/pii/S1059131116302126
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20+ things we love to make evey day cozy in 2019

The Living Well With Epilepsy team and a few of our epilepsy influencer friends put our heads together to come up with a list of our favorite things for 2019.  We want you to be comfy and cozy throughout the year. So here are a few things to make your life a little easier in the coming year.

Living Well With Epilepsy Team

Our team has recommended products they use and love. At this writing there are no affiliate links included and these products were not provided to the writer or reviewer.


 

Jessica's favorite things

Founder and Editor-in-Chief of Living Well With Epilepsy


Conquer Wedge Bootie

I can walk for miles of conference halls in these adorable little wedges. And I get the kudos for still wearing heels at the end of the day!

New Living Well dark tee

Living Well With Epilepsy tee dark
This is our brand new design. The period at the end is a little brain and on the back is the logo. These are a fun comfy updated twist on our previous design.

Cozy blanket scarf

This inexpensive scarf is so soft it looks like a luxury item. When the weather gets chilly I wear it everywhere.

Starbucks coffee

Starbucks coffee is a must for me. Not fancy – just coffee with a ton of milk.

Leila's favorite things

Assistant Editor and Contributing Writer for Living Well With Epilepsy


More Love Letters

The project More Love Letters has been one of my favorite things for a few years now. These ladies believe that letters can give encouragement to others. Anyone and everyone can participate.

Scented candles

Candles are one of the best ways I relax. I like to use Bath and Body Works or Yankee Candle but just about any will do.

Dry Erase Calendar

I love the calendar for my fridge. It keeps me organized and reminds me of what the schedule is. It helps keep our schedules in sync and we don’t constantly have to ask each other what is going on.

Microplush bed blanket

Get cozy and warm with this Microplush Blanket by Threshold. Its made of machine washable material so its easy to clean and maintain.

Whitney's favorite things

Contributing Writer and Resident Tech Visionary for Living Well With Epilepsy


Pink Mineral Soak

Dr Teal's® Restore & Replenish Pure Epsom Salt & Essential Oils Pink Himalayan Mineral Soak - 48oz - image 1 of 1
Ease away sore muscles with this pink mineral soak.

Instacart food shopping

Instacart makes my life so much easier! They do all of the shopping for me and drop it off within 2 hours!

Any.do productivity app

Increase your productivity no matter what technology you use with the Any.do app.

Que Bella Mask

Que Bella Professional Moisturizing Gel Eye Masks - 3 pairs - image 1 of 3
These eye gel masks reduce puffiness without irritation.

Instant Pot cooking

With the instant pot you can set the recipe and let it do the cooking for you!

Passion planner if you like paper

Productive planning goes old school. This diary and planner allows me to get my thoughts together for future and current projects.

Rachel's favorite things

Contributing Writer for Living Well With Epilepsy


Body wash with epsom salt

Dr Teal's Pure Epsom Salt Body Wash Soother & Moisturize With Lavender 24 Ounce
Wash away the aching muscles with the scent of lavender.

Hydro Boost Hydrogel Mask

Neutrogena Moisturizing Hydro Boost Hydrating Face Mask - 1oz - image 1 of 8
A little moisture boost for my face from Neutrogena. This mask won’t irritate my dry and sensitive skin.

Intensive hand balm

L'Occitane Nourishing & Intensive Hand Balm With 25% Organic Shea Butter, 5.2 oz.
This hand balm keeps my very dry skin moisturized without any greasy residue.

Sleepytime Tea

Celestial Seasonings Herbal Sleepytime Tea - 40ct - image 1 of 1
For those nights when it is difficult to go to sleep, I use sleepytime tea. The camomile is delicious and relaxes me enough to get a good night sleep.
Epilepsy skydive

Maureen's favorite things

Contributing Writer and Resident Travel Guru for Living Well With Epilepsy


Five minute journal

The Five-minute Journal is a great way to remind me of what I’m grateful for and prioritize my day.

 

Nalgene water bottle

I use my Nalgene to keep potable water with me wherever I am in the world. It is so important to stay hydrated with all my meds.

Lululemon Yoga Pants

My Lululemon yoga pants are must haves when I travel. They are as comfortable as they are cute!

High Sierra backpack

I use the LWWE High Sierra backpack almost everyday. From being a diaper bag, to a suitcase it goes everywhere with me! Note: These were custom made as a gift for the LWWE team. If you love it click here to let us know. We’ll make more for purchase!

The Americans with Disabilities Act and Epilepsy

posted in: About Epilepsy | 0

President George H.W. Bush and the Americans with Disabilities Act

With the passing of Former President George H.W. Bush, it is a good opportunity to raise awareness of the Americans with Disabilities Act (ADA), which was signed into law in 1990 and was a huge first step to gaining equal rights for people with disabilities.1

The ADA, as it stands today, encompasses five titles, or provisions, that address various areas of concern to achieve equality.2 These include:

  1. Employment
  2. State and Local Government
  3. Public Accommodations and Commercial Facilities
  4. Telecommunications
  5. Miscellaneous

How the ADA is meant to work

Following the signing of the ADA into law, the opportunities for people with disabilities, and for people with epilepsy in particular, opened up. Discrimination on the basis of disability became illegal and a culture of inclusion became possible in the United States. Thanks to the ADA, those of us with qualified disabilities in the US were could no longer be fired from employment and the simple fact of having epilepsy could no longer be a barrier to getting a position. We could even request reasonable accommodations to ensure our safety at work.

A culture of discrimination persists

Although this is the law now, much discrimination unfortunately still exists and goes unreported. People with disabilities are still under- or unemployed at higher rates than the general population. In particular, according to the Disability Statistics Report, in 2016 the employment gap between people with disabilities and those without was 41.1% and is on the rise.3

 

On the ADA and Epilepsy

Regarding public accommodations, there has been much better progress. People with disabilities are allowed in most public institutions and businesses. Those institutions have had to make their buildings accessible to all. Still, there have been occasions where people have had to fight for the right to enter a public place.

 

In the same way, state and local governments are required to provide equal access to programs and services to people with disabilities. This includes access to affordable housing and access to transportation. Many times, people with disabilities get left behind when it comes to housing and transportation, especially in high-rent neighborhoods or rural communities without good infrastructure. This provides a great challenge when you can’t drive and there is no reliable transportation system.

 

The Telecommunications Relay Service provides an easy way for people with hearing and speech disabilities to communicate over the phone as well as have television access. This perhaps was the easiest Title to implement with the fewest problems.

 

The ADA continues to evolve

Since the signing of the ADA, there have been changes/updates to the law, which were signed into law by George W. Bush on September 25, 2008. In effect, he changed the law to broaden the definition of disability.4 I hope one day the we will come to realize the vision of President George H.W. Bush. In his words, “Let the shameful wall of exclusion finally come tumbling down.”


References:

  1. https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990
  2. https://www.ada.gov/cguide.htm
  3. https://disabilitycompendium.org/sites/default/files/user-uploads/2016_AnnualReport.pdf
  4. https://en.wikipedia.org/wiki/ADA_Amendments_Act_of_2008

After the loss: SUDEP from a family perspective

Tonya’s Story

Around the year 2000, my daughter Jesy and I were diagnosed with rare genetic forms of Epilepsy. Although our doctor was one of the best in the country and modern medicine was exploring every angle to find solutions, several years later our diagnosis was classified as refractory, or medically uncontrolled, and our doctor spoke to us about SUDEP ( Sudden Unexplained Death in Epilepsy).

After the initial conversation about SUDEP with our Epileptologist, we agreed a healthy and wise move would be to discuss our “end-of-life” plans with each other on a regular basis, around Thanksgiving every year. Thanksgiving was a good time because the month was observed as one of Epilepsy Awareness and SUDEP was now a big part of our Epilepsy journey. Thanksgiving was also a good time because the conversation gave us so much more for which to be thankful during that time of year. We always thought, because I was oldest and had experienced more seizures for many more years, SUDEP would steal me away first. SUDEP is a thief, a bold thief with no remorse or concern for one’s desire to live. SUDEP steals in the blink of an eye or release of a breath. November 2012, SUDEP stole my daughter moments after my last happy words with her.

I miss her physical body and still shed tears from time to time. But, surviving SUDEP in the way that I have has made me stronger and helps me carry on to live my purpose which was one of her last wishes for me. Jesy hoped that I would live my purpose of sharing wisdom of my life experiences through words, pass them on to public ready to take action to become powerful, responsible, abundant and prosperous adults.

Whether you or a loved on carries the diagnosis of Epilepsy, remember, life is too short. The time to stop fighting to everything ( even awareness) is now. The time to care for one another and ourselves is now. The time to increase our self empowerment and learn more about taking better care of ourselves is now. Develop a growing gratitude for every moment, even the uncomfortable moments. These were some of the words and last wishes of my daughter Jesy, for the public living with a diagnosis of Refractory Epilepsy.

Talk about it

Remember, having a diagnosis of epilepsy may or may not mean you are at risk for SUDEP. So, be courageous and talk to your doctor. Then build on that courage and continue the conversation with family members and friends.


Share your story

 

 

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