I have noticed that a lot of people with narcolepsy are struggling to find a balance between what they can do and what limits them from achieving some of their goals. I am all for “venting” and letting the anger out about this stupid illness. But, I have also found that a “holistic” approach is the only way to go with this disease. Doctors are going to push the typical drugs that are used for alertness like Provigil, Adderall, all kinds of amphetamines, but they only have a limited impact on your quality of life. Narcoleptics don’t sleep like other people. We never get that restful, restorative sleep that helps you function through the day. I can be exhausted at the end of a day and still experience insomnia. So, my advice is to take a holistic approach to your treatment. Read and try new methods for relaxation, meditation, and stress release. If you have a bad day, take it for what it is — a bad day. It doesn’t have to be a bad life. I just stay in the house and sleep on my bad days. (When I was in school or working, I didn’t have that luxury. But, even in high school, my mom used to let me stay home on my worst days - she gave me a break, you know?) The thing is, I’m always striving for better days, and then, more better days. Let me know what’s working for you. I’m always open to new ideas.What's really funny is that I woke up at 3:00 AM today, so I have NO IDEA if I'm going to be able to function today. :)
Powerful words! I am inspired by you!!
Thank you, Jackie!