Living With Narcolepsy Isn't Always Easy

Living with narcolepsy isn’t always easy. With it being an invisible illness, often people look at me and think everything is normal. My days are far from normal.

Because of narcolepsy, I have a harder time doing multiple things on a daily basis.

Motivation, where are you?

The thing I have the hardest time doing daily is finding the motivation to get up and get things done. Most days, I would much rather stay in bed and just be lazy, but most of the time, if I do that, I end up regretting it.

I have to do something almost constantly, or else I will get sleepy and want to lie down the rest of the day. Most people probably experience this from time to time, but it is a daily thing for me.

Showering takes many spoons

Another thing that I find myself having a harder time doing is showering on a daily basis. Honestly, showering is one of my least favorite things. I have to find the motivation just to get up and get in the shower, but I also have to get the motivation to take the shower and wash my hair and body.

Every time I shower, it takes so many spoons. Don’t get me wrong, I don’t like not showering either because I like to be clean, but showering just takes a lot out of me.

Cooking takes a lot out of me

Cooking is another thing I have a hard time doing daily. Having the energy to get up and cook a meal multiple times a day is just so tough for me. I have to pick out something to cook and then stand around and cook it. This is just like showering because it takes so much out of me.

Will I have enough spoons left?

These are just some of the things that I find are harder for me to do daily. People without narcolepsy don’t see or don’t understand why these things are harder for me or another person living with narcolepsy.

I wish I had the energy to do these things without worrying if I will have spoons left to do everything else I need to do that day or if I use too many spoons one day, will I have enough the next day? It’s hard to manage my spoons each day, and sometimes I run myself short and don’t get certain things done.

Being hard on myself isn't helpful

On days I don’t get everything done, I try to stay positive. I’m not helping myself if I bring myself down and be hard on myself for not getting something done. If I don’t get something done one day, I save it for a day when I have more spoons.

If it’s a task that I need to get done by a certain day or time, I will be sure to put that first on my list and get it done.

Spacing out my tasks

Some things I find helpful with these activities are spacing things out that are more difficult. On days I shower, I will cook easier meals or have leftovers. On days when I have less motivation, I give myself grace and rest more than normal.

What are some things you find yourself struggling with more than others daily? What are some things you do to get through these hard tasks?