I baked cookies!

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.


The next chapter: Narcolepsy cont…

I haven’t written in a while – purely because not a lot of progress/change/developments have taken place over this past month. But I am now another step closer to the next stage of treatment. I’ve just returned from an appointment with my sleep specialist. Since I last saw her I had to have an echo and a series of blood tests to check my general organ health before she would consider putting me on medication. Thankfully all tests were clear so as far as she’s concerned…I’m good to go. 

The next step is applying for the medication. To take Modavigil, my sleep specialist needs to send the PBS my file so that they can approve my taking of the medication. I’ve obviously never had medication that required such a process to take it so I was worried that it would mean a lot of expenses to get the drugs I need. BUT…according to the PBS website, I won’t be paying any more than my other medications anyway. PHEW!

Within about 2-3 weeks I should have these new drugs in my hands. Apparently I get to look forward to a period of nausea and headaches with possible heightened anxiety (FUN). Thankfully my latest production, RENT (book tickets), will be done and dusted by that time so I should be able to get myself through the early side-effects. But please, bear with me during that time. It will take a few months before I can work out the right dosage, but hopefully it will get me back on track. 

So until I get those meds…sleep well my lovelies.