Narcolepsy part the second

I think I'm going to stop making promises about when I'm going to get to updating this blog thing. I usually read the last post I made and then make any updates promised in the last one when writing the current one. Time and energy are resources that I seem to have an issue with lol.

So I'm a few weeks in on meds. I was lucky to start them mostly in our winter break for work so it gave me a chance to play around with when to take them and how to take them. I seem to get about 6 hours of non-foggy wakeful productive time. Some days the meds barely scratch the surface and I still struggle. For the TMI, the only negative I've noticed so far is that it makes my pee smell funny (not quite as bad as asparagus pee at least). I do think I'm going to ask for an option for something to stretch my lucid time a little later in the evenings to get me through getting the boys to practice and cooking dinner. One night I was so tired after the meds wore off, I sat on the kitchen floor and just cried because it felt like it took every bit of energy to stir a spoon in a pot. In the past, I think I had more evenings like that than I care to admit but I just didn't notice because it was the norm. Now that I have some sort of comparison ...it almost hurts more.

We had a decent storm the other day and it was cold, windy, rainy, and generally unpleasant for most of the day. It was the first time in weeks that even after taking the meds I had to lay down after getting the kids ready because I was already tired. When that happens, I go through emails on my phone and sort through my project list and determine priorities for the day. Sleeping doesn't really help at that point, but resting seems to give me enough energy to make it to getting Native 2 to school and then I can power through work when I get back. I honestly felt foggy until right at 10:30 or 11, I had a meeting at 11 and I was just thankful I had enough gas in the tank to function. The Natives had 2 hour early release because of the storm and when I picked up Native2 at 2pm I had a sleep attack on the way home.

Before you all freak out, its the name for when the uncontrollable urge to sleep hits. It doesn't mean you fall asleep immediately. I got him home and had him do his homework next to me while I went in and out of sleep for an hour. When I got up, I went back to working on a project where I'm reading through open grant opportunities that support graduate training. It's slow going on the good days because it triggers my excessive daytime sleepiness so needless to say it wasn't a highly productive day. I don't know why the storm made it such a rough day, I don't really understand why the weather would make it so much worse but I accepted the reality of my disease and tried not to use words like lazy and unmotivated in my head.

Sometimes I have this strange sensation of knowing the meds are covering up the fatigue. I can feel the sleep attack under the surface and my brain goes into a buffering mode where I'm not tired exactly but words come slowly and I sort of forget what I'm doing midsentence. It's not bad if I'm writing an email, or working on a report, but I'm really nervous when it happens in a meeting or just a conversation because I don't want people to think I'm incompetent or stupid. I'm having a difficult time expressing how this disorder affects me to my own people, I really don't know how to tell perfect strangers.