My New Narcolepsy Mindset

Updated: Apr 4

Change your beliefs on what your diagnosis means to you

For the past 10 years I have been trying to figure out life and how to live it with Narcolepsy. There have been so many times that I have felt the harsh sword of depression and the infamous “why me” feeling.

I know life is short and there are so many things that I want to do in my time, so many places I want to explore and new experiences that I want to have. Those ambitions can quickly run dry trying to jungle making a living, maintaining some sort of social life and possibly a relationship.

Sometimes, it’s hard to imagine doing any one of those things well, let alone having them all in my life. Just the thought of it can be overwhelming.

For the vast majority of my life after my diagnosis, I was always thinking about juicing up my energy during the day. How can I rev my body on high to feel alive and energized. Supplementing with prescribed meds and some serious caffeine I was able to feel sharp for short periods of time… but in the back of my mind it never felt real, it never felt like me.

Eventually, after red lining my body for years, I finally hit the wall. The wall where no amount of drugs or caffeine could give me the energized high that I was constantly chasing. In a way, seeking out the blissful high from stimulants had become an addiction for me because life without it had become far too inadequate.

It was at this crash when I felt most like placing blame. I was just angry, I would always ask myself what did I do to deserve this. I am not a religious guy but I do believe in a higher power and I was angry with him. I felt slighted, an unjust punishment and a shortage on life. I felt all my potential was going to be wasted because of this diagnosis. This phase lasted for over a year.

After a year of being off stimulants and searching for an answer my point of view slowly started to shift. This was also right in the midst of the Pandemic and the outrage from the George Floyd killing. In a way I was forced to take a good hard look at myself and the world that I was living in.

As I looked around me, I started to see a truth that I wasn't able to see before. The simple truth that EVERYONE has sh*t in their life that they are forced to deal with. Everyone...

Some people grew up abused, some are addicted to drugs, some are disfigured, some struggle with food and body image, others are homeless, some never had the opportunity for education, many have different diagnoses that impair their lives every single day and the list goes on and on.

It seemed like my whole life I was comparing myself to the perfect celebrity life that is displayed online. The “fake it till you make it” culture has exploded over the past few years and I fell victim to believing this was real life. When the truth is, we all have our obstacles and demons to face, no matter who we are. Some demons are worse than others but in the end we all have them.

This realization started to make the struggle I was experiencing more “normal” for me. No one can know how I feel and I can't pretend I know how others feel but we do all share the struggle in facing the hardships that are placed in our lives. That is one thing that we all have in common.

With this new recognition, I could see that maybe I wasn't being punished or mistreated, that maybe I didn't catch the short end of the stick. I was able to release some of my anger and resentment and start to see my diagnosis as the obstacle that has been placed in my path to conquer. That being Narcoleptic is a part of me and who I am.

Now my diagnosis isn't my enemy but my life’s challenge. An intentional obstacle that has been placed in my life to overcome, an obstacle that will mold me into a better person throughout my journey.

With all that being said, if given the opportunity I would take away my Narcolepsy in a heartbeat but I can’t… and as of right now no one can. So I know the only thing that I can do is be as proactive as possible.

Here is my approach.

Using my degree in Exercise Science and my dietician friends I have been testing everything that shows scientific evidence or promise to enhance energy levels.

Many people will argue that Narcolepsy is a disorder and nothing can change your symptoms… and to that I would agree with but only to an extent.

My strategy isn't about curing Narcolepsy but rather optimizing everything else in my life that may increase my narcolepsy symptoms. I started to see that my mood and energy was always shifting depending on the things I was eating, activities I was doing and the things that I was putting into my mind. I started moving towards those things that have a positive effect on my experience and those positive outcomes continue to be more common.

To put it in non scientific terms…

How do I get my brain to have maximum energy & thinking power.

What can I do to help my body stay strong with interrupted sleep patterns.

How do I maximize my body's energy cells and make them stronger and more active.

And most importantly, how do I optimize my mind and my thinking to better cope with my condition.

I can’t say that I have found any one strategy that has been the silver bullet, far from it. What I can say is that the combination of these things have dramatically changed my experience to where I can live a normal life off medication.

I am not against meds in any way, shape or form. I believe that everyone knows their body best and should make their own decisions on what is best for them.

What I am saying is that there are things that are proven to optimize all of these energy boosting categories and I believe that it can help others decrease symptoms they experience with Narcolepsy (with or without medication).

Everyone is in a different place and has different beliefs but my change all started with my belief change. Turning myself from a victim of my diagnosis to seeing this as a challenge in my life that I am tasked with figuring out.

It’s not a perfect explanation or mindset but I believe that it is a good starting place for me. A place that I can build off of and move forward with because holding in all that anger and resentment was starting to become my prison cell. A prison cell of my own making… When you are alone, locked away, you can never make progress. You can only live in your own misery.

I don't know how my life will end up or how I will be feeling in a few years from now but I have become more optimistic. I have learned to try and search for meaning in all this struggle… I haven't found a golden purpose for it but my search has given me some peace of mind. Peace of mind that one day it will all make sense and that the journey will be worth the struggle.

Through all the hardship I will become stronger, more understanding and a better man.

I do feel stronger than I did a year ago, to me that's progress. I think it’s helpful to let the progress be slow and don’t have unrealistic expectations for immediate change. Every time I demanded a fast change for myself, I would always end up disappointed and discouraged. Noticing the small changes over time in your commitment, mindset and effort can make all the difference you need to get started.

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After living on stimulants for 8 years, I decided to drastically change my approach to living with Narcolepsy. After 2 years of living off medication and working on my health I have never felt better. I hope these articles help you get to a fulfilled & energized life. 

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