How a Daily Routine Helps With My Narcolepsy
It was a hard process to get into a good routine that works for me. There were ups and downs for several months. This is what I found worked for me.
What my nightly routine looks like
My nighttime routine always starts with getting my pajamas on and taking my Xyrem, because for me it always takes an hour for it to kick in. After I take Xyrem, I brush my teeth. Washing my face and taking my other medications comes next.
I have problems with TMJ (temporomandibular joint dysfunction) so I warm up heating pads to put around my jaw for 5-10 minutes, and I usually floss my teeth during this time, too. I am in physical therapy to help with another chronic condition I have, so I then do the exercises for that.
While I heat up another heating pad, I set my alarm for both the morning and for when it is time to take my second dose of Xyrem. Lastly, I get my heating pad and 2 ice packs and get into bed. I sleep with a heating pad and 2 ice packs every night to help with the pain from my Ehlers-Danlos syndrome.
Another part of my nighttime routine is going to bed around the same time every night. I try to go to bed anywhere between 9 PM and 11 PM every night. I do these things in the same order every single night.
My morning routine
Now onto my morning routine. I wake up anywhere from 6 AM to 9 AM every day, depending on what I have going on. My morning routine starts with me getting out of bed and cleaning my retainer. I then brush my teeth and take my medications. I have a dog, so the next thing I do is take him outside and give him food and water. Then I get dressed and wash my face. The only thing that isn’t always the same is what I do with my hair; I put my hair up the majority of the time, because at school and work I work with patients and have to have it up. If I am not working, I usually have my hair down. The last part of my routine is eating breakfast. I also do these things in the same order every single day.
The biggest thing that isn’t always the same is when I shower. I like to shower at night right when I get home because it takes up a lot of energy, so I am always tired afterwards. There are some mornings when I shower if I don’t have anything going on.
Having a routine is important for narcolepsy management
In my opinion, doing things at the same time and in the same order helps my mind know that it is time to sleep after I do my routine; in the same way, my mind knows that it is time to wake up and stay up after I do my morning routine. I personally think that these routines make me just a little less sleepy during the day.
A routine isn’t for everyone, but I wanted to share what routines I have and how much they help me with my narcolepsy. I have noticed that if I don’t stick to my routine, I feel like something is off and it feels like my mind knows I didn’t do the normal routine.
Do you have a night and/or day routine? If so, what do you do as a routine?
How would you describe your relationship with your doctor?