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.
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.
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.