Awareness,  Epilepsy,  Personal

5 Mistakes I’ve Made With Epilepsy

Learning to live with a chronic illness can be challenging. There is no shortage of new things to learn and juggle. Mistakes are bound to happen and I’ve made plenty of them.

Here are a few mistakes I’ve made while learning to live with epilepsy:

5 Mistakes I’ve Made With Epilepsy

1. Trying To Do Everything Solo

Call me stubborn. Bullheaded. I’d like to think of it more along the lines of strongly independent. This is what I was before diagnosed with epilepsy. I never liked asking for help in doing things.

I rarely sought out assistance in completing a task or chore. Limitations were placed upon my life to ensure my safety and in attempts to prevent additional seizures. This in some instances, required me to rely on others for help.

I made the mistake of turning down offers for assistance and attempting to do things on my own. I was upset that my independence had been stolen and felt as though I would be looked upon as weak.

Trying to do things on our own given the potential of triggering our illness is neither safe nor prudent. Asking for help does not make you weak. It makes you strong.

2. Mourning

Mourning your old life is completely normal and valid. The release of certain patterns, habits, and places I’d become used to was difficult but necessary to ensure my safety and prevent additional seizures.

In doing so, I struggled with various painful emotions ranging from depression, sadness, anger, doubt, even loneliness.

I also needed to mourn dreams that would forever remain dreams and create new ones.

Mourning, if done right, can be healthy.

We may not understand what we need to mourn right away but time always has a way of revealing what we need to know.

3. Comparing

It’s easy to compare ourselves to someone else. It’s even easier for a person with a chronic illness to get caught up in the comparison trap. I struggled with this for years. I made the mistake of allowing feelings of insecurity, envy, and discontentment to string me along.

Rather than locking your focus on another persons’ life, if you turn your focus inward, you start being better at what really matters: being you.

4. Ignoring Priorities

When a serious medical condition enters into the picture, it’s time to get serious about day-to-day living. Taking medication on time, scheduling appointments and showing up on time, refilling prescriptions, dealing with the insurance company…Everything related to our chronic illness takes top priority. Our life depends on it. Literally.

I made the mistake of forgetting to call the pharmacy to refill my prescription because I was too deep into my work. Thank God I had just enough to get me through for a few additional days. However, not even work should take priority over your chronic illness. How can you work if you aren’t well?

That television show can wait. The dishes can wait. Social media can wait. Wordle can wait.

5. Not Journaling or Tracking Symptoms

Have you thought to yourself…”I have a good memory”? Never rely solely on your memory when it comes to tracking symptoms. It’s wise and beneficial to have a physical log of your symptoms. Not only for your own awareness but for the doctor to be informed on your progress to ensure you’re given the best treatment possible.

I made the mistake of believing that I did not need to keep track of my seizures or symptoms. I felt certain that after having epilepsy for several years, I knew my condition well.

Symptoms rise and fall on their terms. They don’t have a set schedule. Sure we can gain a sense of how our chronic illness behaves but at the end of the day, we don’t have complete control.

There are a wide variety of methods to track symptoms. Click here to view available apps for both iOS and Android and a best seller amongst the epilepsy community created by an epilepsy warrior and advocate The Seizure Diary. Try different things and see what works for you.

So in conclusion, don’t do what I did.

Put your health and happiness first.

Hopefully the mistakes that I’ve made will help prevent you from making similar ones. They have been very instrumental in shaping me into the person I am today.

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

2 Comments

  • Avatar
    Nancy McCulley

    I can relate SO much to the 5 mistakes made with epilepsy. I’m currently making all of them. I’ve had epilepsy for over 20 years, but in the last two years, it has changed a lot. My seizure types have changed and became more frequent. I have other neurological issues associated with epilepsy, including migraines that require shots. I have cut my work to almost nothing. I look back at social media post from 10 years ago and I can’t believe how much I’ve changed. My cognitive and physical ability is nowhere near what it use to be. I’m beyond mourning that. Sure, I would have some seizures before and had medicine side effects, but now I don’t recognize me. My doctor seems to enjoy migraine research and all that is involved in that, so he really doesn’t listen to me when I say something about seizure issues. He seems unconcerned. It makes me feel stupid so I say nothing and quit writing it down. I assume I’m not a severe case compared to what he sees, so he doesn’t worry about it. Getting a new neurologist is difficult because there aren’t many where I live. He is considered the absolute best in my area. This only causes more disconnect for me. It’s a tough thing to deal with and I appreciate you writing this article.

  • Avatar
    Lee Evans

    Hi Tiffany Karros, My name is Lee evans and like
    You, I suffer from epilepsy, PHOTOSYNTHESIS EPILEPSY, eg, Flashing light,s STROBE LIGHTING, frightens me And could possibly Trigger a seizure, I also suffer from panic attacks For which I really can’t afford, as along with this condition the two do not combine very well.
    But I take medication for this, thus it’s keeping On the straight and narrow.. at last I finally had a Chance To reply for real to you embarrassing To Speak for real to somebody that knows how my Condition affects me,& of course what I would like to do to help others with this poorly Condition. As being born with congenital HYDROCEPHALUS I have coped well to conquer My demon in my epilepsy diagnosis.
    With the kindest regards.
    Lee Evans,
    Bushey,
    Hertfordshire.
    Wd23 3ps

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