One step forward, three steps back...

So where have I been you might be asking yourself. I will tell you...I have been sitting on the couch trying to find the energy to get on my computer and type up a new entry. Things have gone from good, to manageable, to near awful in a matter of a couple weeks (strictly speaking in terms of the narcolepsy).

When I started on the Adderall, things were great. I was sleeping through the night and staying up during the day. I had the energy to do all the things I had only "dreamt" about doing for so long (haha pun intended).

And then lately I started lagging. I attributed it to a bad night's sleep here and there and then to the stress of moving and then I had a really bad nights sleep and thats when I knew something was up. I got up in the morning a few days ago and ended up going back on the couch and an hour later I was asleep for three hours. That's really when I knew that I was headed downhill again. I feel like I am on a constant roller coaster. I do really well for a few weeks and start heading downhill, then I go to the doctor and the medicine changes again and I am on the uphill slope again and back and forth and back and forth. So I am going to a new doctor in Tennessee tomorrow to get things adjusted, again.

What I think the most important thing people need to realize is not the physical or even biological aspects of Narcolepsy, but the emotional and social aspects of Narcolepsy. Imagine the most exhausting day of your life and how irritable and quiet and unmotivated you were. Now, imagine repeating that day over and over and over again, never knowing when you wake up in the morning if its going to be another day that it feels like the hardest thing to do to even get out of bed in the morning. That's what my days have been feeling like lately. I just started school down here in Tennessee and I love my classes. But without taking extra medicine, I can barely keep my eyes open to read. Today was the first day I really got to do some homework and that was only because I took an extra dose of medicine. Sometimes it just makes me down and angry and some days I feel like I can be an inspiration to others and teach people about the misunderstood disease. And some days I wish I could wake up and be "normal". I guess it's part of going through all the stages of grief.

I am just so frustrated with the ups and downs. Tomorrow is another day though. I hope that the new doctor figures some things. Wish me luck.