I can probably piece together this information based on posts in many different threads, but here's what I want to know: What is your daily schedule/regimen? I was diagnosed with N when I was 19, and to be honest, I haven't really dealt with it well at all. For a long time, I eschewed medicine, thinking that N wasn't "real" and that I could just fix it by getting more sleep--yes, I was feeding in to the mentality that so many people have about us. But now, nine years later, my N is out of control. The desire to sleep is overwhelming, and I often find myself in a complete fog and making no sense when I talk due to the uncontrollable need to sleep. As a teacher, this is NOT good, because I find myself losing focus and falling asleep--mostly just brief hallucinations--at my desk. I have a supportive husband and family, but they really just don't understand how debilitating this can be (their answer is always just to exercise more, even though I do intense workouts four days a week already!) and since N is so rare, I don't know anyone else with the condition. I'm trying to look into lifestyle changes (already gluten-free due to the fact that I'm also a Celiac) that will help me to manage my N. I feel like this is getting to the point that I have two choices: 1) I can allow N to take over my life, making me gain weight, feel sleepy, and become less sociable, or 2) I can make serious lifestyle changes to manage it. And considering the fact that I'd like to start a family soon, I NEED to get this under control!
Can you guys who feel like you're dealing with your N well give me an hourly rundown of your day? I want to know when/how often you eat, what you eat, when/how often you nap, when you go to bed, when you wake up, when you exercise, when you take your meds (and what you take), etc. I want all that info as I try to adjust my own lifestyle to better cope with this HORRIBLE illness! Sorry for the super long post; I've just been feeling very isolated (and, I'll admit it, kind of sorry for myself) lately.
-Liz in KY