Last Friday I got a letter in the mail containing a prescription for Modavigil. At the time I was excited…finally my narcolepsy meds were here! Modavigil is essentially a stimulant to help “improve wakefulness in people with excessive daytime sleepiness associated with the medical condition known as narcolepsy” (http://www.mydr.com.au/medicines/cmis/modavigil-tablets). Because it is used to help keep me awake, obviously I can only take it in the mornings. So, I had to wait until Saturday to take them.
Friday night I got home at about 12.30am, went to bed about 45min later and had to get up at 7.30am on Saturday. Obviously I just wanted to go back to sleep, but I had to get the youngest to cricket. Then I had an unexpected thought running through my head…I didn’t want to take the tablet today, I wanted to be able to come back from cricket and go back to bed. I wanted to be able to nap.
After 10 years of being ill, napping had become my comfort and part of who I was. I was suddenly scared of letting that go.
10 years is a long time..and this 10 years occurred during my “who am I” period (age 18-28). Without being tired, I don’t know who I am. I have memories of having energy: having dance classes every day of the week for shows, staying up past 8.30pm to watch TV, baking cookies every weekend…all things I haven’t been able to cope with for a really long time without facing consequences the next day.
Anyway, I finally talked myself into taking my first 1/2 tablet. After lunch I still had my planned nap because I was sleep deprived from a few late nights. The thing that surprised me was when I woke up, I was still a little sleepy, but I didn’t feel exhausted and ill with no drive to get up (feelings I face after every nap). I got up and I baked cookies!
This may seem like a small thing, but for me, this is huge! I loved baking as a kid, but I’d gotten so sick that it had become a chore to even get the ingredients out of the cupboard.
So generally at this early stage of the medication and starting out on just a 1/2 tablet, I’m noticing some changes and it makes me happy. I’m still sleepy, but the fog and fatigue have lifted. My brain actually feels like it’s awake for the first time in a long time. Whilst I knew my inability to do much was because of the narcolepsy, I still had this fear I was lazy. But right now I’m happily getting my work done and although home time is still a while away, I’m not upset at the thought of having to do housework when I do get home.
I’m not saying I’m now 100% better – I still have a while to go – but for once I have hope and a regained strength to push through and fight once more.