Surviving

I know that I am more than this disease, but that is often hard to remember. My narcolepsy has certainly been an adventure. I hope I am now at the point that I can begin to embrace both the loss and the gain that I have experienced.

I was diagnosed late in August of 2007. Of course, I had a previous sleep study in June of 2004, which showed I was, "a sleepy guy." Those are the doctor's actual words. It wasn't "real" narcolepsy because I didn't have REM sleep during my naps, but the average time for my naps was 6.5 minutes with nap four happening in 3 minutes. So, in the summer of 2004, I started taking methylphenidate. First, I only used 10 mg pills, but we soon move to a 10 mg pill in the AM with a 27 mg Concerta for the rest of the day.

I also have other health quirks (chronic sinusitis and IBS) that seemed to confuse everything. Often, I would chase one possible solution, but lose sight of other things going on in my body. Eventually, a wise doctor had me stop all of my drugs. While that didn't help me physically, it did open the door for me to have the second sleep study. This time, the tests clearly showed narcolepsy. I think one of the problems the first time around was that I was taking an anti-depressant. Those tend to suppress REM - the very thing we were trying to find.

The road since August of 2007 has been nuts. It is great to know that much of what I have been experiencing is the narcolepsy; the past seven years have been a steady decline in energy for me. But knowing and coping are two wildly different things. Part of my struggle has been simply accepting the idea of being disabled. The truth is that I simply can't do what I used to do. My body jsut doesn't work that way. Another part has been the battle to find the right medications. I tried Provigil, but am in that tiny group that reacts horribly to it. Provigil affected me the way large doses of stimulants tend to affect others. After that, my doctor had me try methylphenidate again, but 80 mg during the day was not nearly enough. We settled on amphetamine, which seems to work okay, except for the high blood pressure that it is creating. I get to take atenolol now since I was 150/100 at my last doctor appointment.

Still, I feel lucky. One, my narcolepsy is manageable. Two, I do not experience cataplexy, at least I don't think that I do. Three, I have a supportive spouse and a job that allows me to work part-time. Four, and most important, I needed to slow down in my life. I know that the narcolepsy has helped me to see what is important to me. That doesn't change the fact that this disease continues to frustrate and anger me, but it does help me to remain calm even as I struggle to get a simple task done.

I also know that my narcolepsy has forced me to open up more. I need to connect with other narcoleptics. I think I have found a support group, but I also just need to express my insights and ideas. Hence, I started this blog. Many of the posts will be about narcolepsy and my journey, but it will also cover anything and everything that enters my wee little brain. If anyone ever reads it, great. If not, great.