The Importance of Sleep Routines and Self-Care
I have been diagnosed with narcolepsy type 1 for many years now and have experienced all the usual symptoms. I have phases where my excessive daytime sleepiness is prominent and then the next week it will be the hallucinations while falling in or out of sleep.
I am always aware of my body, and I try to avoid any situations where my cataplexy can be triggered. I am always so focused on these symptoms, and when sleep paralysis hits me, it resonates with me in a whole different way.
Staying up late on a weekend
Two weeks ago, my husband and I stayed up late on his weekend off, and I was only able to take 1 dose of my Xywav® on Friday and Saturday night. I felt a little run down on those 2 days; however, I knew I would be able to sleep Monday and take it easy after he went to work. I no longer work out of the home and my kids are grown, so I always plan Mondays for weekend recovery mode.
Monday, I felt completely out of it. My short-term memory was shot, and I had a hard time putting my thoughts together. I slept a lot and figured I would go to bed early that night and everything would be fixed! Boy, was I wrong!
I somehow missed my second dose
I usually take my Xywav® at 12 AM. My second dose is usually at 3:30 AM. I will generally start waking at 8 AM and I am out of bed by 8:20. No lingering effects from the medication and I am ready to go!
This night I wanted some solid sleep so badly, so I took my meds at 10 PM so I could go to bed and remain there. I figured I would take my second dose at the usual time, resulting in a 10-hour blissful sleep session. I tossed and turned and dreamed for hours and somehow missed my second dose. The dreams that cycled all night were horrible and all related to some internal regrets and grief.
Stuck between consciousness and dreaming
When it was time to awaken, my conscious self was telling my sleep self it was time to get up; however, my body would not listen. I could not move my arms and legs and could not open my eyes. I felt like a wrapped-up burrito. The dreams kept going on while I was semi-conscious, and it felt like I was arguing with myself to wake.
It is the strangest feeling to be in a state where you cannot move, yet you are conscious and dreaming. I have felt that way in a cataplexy attack; however, there are no dreams, and it has never happened to this extent. It went on for at least an hour. I did not know it could last that long! I was scared at times, but the dreaming was the worst part.
I cannot change my sleep routine without consequences
I expect things to happen with my narcolepsy daily, but when something like this happens, it is a big reminder that I cannot change my routine without consequences. I continued to have heightened symptoms the rest of the week and it wasn’t until Friday that I felt back to “normal."
People living with narcolepsy must put body management before anything else. You must take care of yourself and take your medication regularly. Sleep hygiene and routines are necessary to help your brain function better.
I put the musings of weekend fun before my needs, and it came back tenfold. If you are not taking care of yourself, you cannot take care of anyone else to your full potential. It is not selfish, it is self-care!
Where are you in your narcolepsy diagnosis journey?