3 Ways to Live a Better Life With Narcolepsy
Last updated: September 2023
One way to live better with narcolepsy is to learn what is best for you. After my diagnosis of narcolepsy, I thought that my life would be what it was before narcolepsy; this was not the case. Although using medication allows my symptoms to become more manageable, it is not a cure. I began this new life, this new normal.
What I learned about living with narcolepsy
I had to learn how to function with narcolepsy, and this took time. Every day I paid attention to my symptoms. I took note of activities that made me tired. I learned that overeating, stress, dark rooms, and excessively working out are what I call my triggers. Triggers are things that most likely will cause a sleepy episode.
I also discovered I have more energy in the morning, and any nap during the day longer than an hour would give me a headache. Realizing these things allowed me to make better choices for a more satisfying life.
Tip 1: Know your triggers
Take the time to write out what triggers your tiredness and when you are most energetic. Avoid your triggers and or develop a plan around them.
For example, sitting down in lectures makes me tired. I sit on an aisle or in the back so I can stand and move around if I feel myself getting too tired.
Tip 2: Talk about the struggles
Another way to live better is to learn to communicate your struggles for others to understand. After you have written out your triggers and how to solve them, reach out to those closest to you. Have a conversation about your findings and discuss how narcolepsy affects your daily life.
A suitable method of explanation is the spoons method. No one understands what it is like to have narcolepsy unless you have narcolepsy. So you have to be vulnerable and talk about your struggles.
An example from my kitchen
After 9 PM, I am usually exhausted and checked out for the day. On several occasions, I am cleaning the kitchen and after putting a clean spoon in the freezer, I finally throw in the towel and decide I need to go to bed with the kitchen not clean. "Why do you always do that?" my roommate asked with an attitude referring to the half-cleaned kitchen. I could have refuted with the same energy. "First of all, it's not always, and second of all, it gets done eventually, so what's the big deal."
Instead, I explain to her the situation. Since we already discussed the spoons method, it's easy to discuss it in the same manner. "I thought I had one spoon left, but it ended up being a plastic one and broke," I say with a wink. "I'm sorry, and I will try not to do it again."
Tip 3: Give yourself grace
The third way to live a better life with narcolepsy is to give yourself grace. No matter what you do, nothing fixes the excessive sleepiness. Some days simply aren't good narcolepsy days. Within those days, I give myself grace.
Grace is choosing to love ourselves regardless of the natural imperfections of our lives. We are dealing with the cards we have received, and the only thing we can control is our mindset. Choose peace and know you are doing the best you can.
To practice giving myself grace, I like to recite affirmations. Some of my favorites are:
- I love myself unconditionally.
- I am learning from my mistakes.
- I accept my failures, but they don't define me.
- Success is defined by my willingness to keep going.
- I commit to get out of my head and get into the world.
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