A Roller-coaster of a Few Days (with some Narcoleptic naps in between)

So I know I have a long overdue post for everyone (being the five people that follow me). So Wednesday night the heavens opened up and the new sleep doctor that I made an appointment with in Knoxville called to say that they had an opening on Thursday. I was very excited to say the least. So Sean and I got up bright and early to head to Knoxville the next morning.

When we got to the doctors office, I filled out the paperwork and we were brought into a room with a bed that I guess they used for sleep studies as well. After the nurse took my vitals, the doctor came in. He was older, probably in his sixties, with gray hair and a beard and a short stature. Between Sean and I, we explained what has been going on lately (in terms of things becoming increasingly more difficult to manage  both during the day and at night).

He listened and his first suggestion was putting me on Xyrem. Sean has been doing research since I got the diagnosis and Xyrem was one of the medications that he came across. Basically Xyrem is a medication that you take twice at night. It comes in liquid form that you dilute with water. You put the Xyrem into two different containers and take one before bed and set an alarm for 2.5 to 4 hours later and take the second dose. Xyrem has proven to help Narcoleptics get the restful stage of sleep throughout the night and reduce cataplexy. The doctor said that he has seen a lot of success with the medication and highly recommends it. He also doubled my dose of Adderall which is a relief too.

So we left with good news I guess. We did some errands and then headed home. When we got back we went to fill the Adderall prescription, and everywhere within 45 minutes was out of it. So we went 45 minutes away to fill the prescription which is when everything kind of hit me.

I guess it was the combination of everything. I hadn't mentioned it before because it hadn't bothered me, but for the first time in my entire life I had to go to Student Services with a doctor's note to notify the school that I have Narcolepsy and if I fall asleep in class to make an exception. And I have to be on a medication that I have to take twice a night. And medications throughout the day to stay awake. My entire life really has changed since the diagnosis. I now have to stick to a sleep schedule and take scheduled naps. I have to plan my day around when I will feel most awake. I have to plan my rides according to how awake I will be and if I will be able to drive myself. And I guess the culmination of the entire day hit me. I just felt very frustrated and alone. I think that is the worst thing about the entire disease. It's not that I don't have plenty of support from friends, family and Sean (who has been the most amazing guy in the whole world) but I don't have anyone to talk to face to face about what having Narcolepsy is like, and that is the most difficult thing to deal with.

But Sean was, like he is every single day of my life, my rock. He let me cry and get it out and listened to what I said and was so supportive. He manages to show me some of the ways in which I can turn a crappy disease into a chance to educate others.

Friday was the start of a wonderful weekend. Sean and I headed to Galinburg for a weekend away in a cabin. The weekend was amazing. I was sleepy a few times but with Sean's help, I kept a good attitude the whole weekend and couldn't have asked for a better time. It was the perfect timing for a much needed getaway.

And I managed to get through the day today. The only thing that really got to me was that I fell asleep when I was cooking dinner because I sat down on the couch for like literally two minutes. That was rough but as soon as I get the Xyrem I'm hoping for things to turn around.