4 Terms I Created to Describe My Narcolepsy
Last updated: September 2023
Over the years I have created terms to describe my narcolepsy. It's so hard to describe how I feel sometimes! When I say I am tired to someone who has no sleeping disorder, it is understandable that they will use their own experience and how they feel when they are tired to try to relate, however for a narcoleptic it is completely different.
When I say I am tired and I need to lay down, there is no fighting it or putting it off. There is no quick fix or energy drink that will work. I have a very short window to get to a safe place or I am going to fall asleep and my body will not care where I am at!
Describing how I feel
Here are a few terms I have come up with to help describe how I feel.
The feeling of my legs getting so tired and walking becomes difficult. It feels like I have a bucket on each foot filled with cement. This happens a lot when I get overheated or am exposed to a lot of stress. Example: “I have bucket feet, I need to sit and rest.”
When I have lucid dreams and they are very emotional and carry on with me through the day. Sometimes these dreams can be like memories and it takes an extraordinarily strong mind to work through them daily. Example: “I have a dream hangover and I’ve been sad all day.”
When I am startled or when I am under a lot of stress, I get heavy eyelids and sometimes they close and I cannot open them. It’s a form of cataplexy and it was actually one of the first types of cataplexy I experienced. Example: “I was startled during the movie and had an eye plexy.”
My on/off is broken
This is the easiest way for me to describe my narcolepsy to someone. It is hard to explain all the components of this disease to someone in a short amount of time. Example: “My narcolepsy is not just about being tired, my on/off is broken.”
Keeping it short and simple
These are just a few that I have come up with. I try to make it short and simple. If I start telling people about the hallucinations and digestive issues associated along with all the other frustrating symptoms we suffer from, I feel the message gets lost.
Unfortunately, we live in a society where we do not always get love and understanding from the people around us. They equate being tired or being unable to work as laziness or lack of skills.
More empathy, less judgment
I used to hide my diagnosis and say I had a neurological issue, yet I realized if I kept doing it, I would be doing myself a disfavor. I need to educate people! I need to describe to them how it feels so they can have empathy instead of judgment. Sometimes a little understanding can go a long way!
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