About 18 months to two years ago I began falling asleep any time I was still. Whether I was working on the computer, working at a desk or writing; I would fall asleep. I would fall asleep first thing in the morning or at the beginning of shift. It got so bad that I couldn’t write the permits without throwing away one or two for every one I was able to write. When I would fall asleep I would keep writing, but of course, it was not legible. This was really excessive daytime sleepiness.
Sitting in a meeting without falling asleep was out of the question and there were times that I fell asleep when a supervisor was in the room.
I started to wonder if I might have a big problem about a year ago when a guy I work with took a picture of me (at work) almost falling out of a chair sound asleep. My hair was almost touching the floor. I couldn’t believe it.
About nine months ago I started falling asleep when I was writing a permit for someone; right in front of them. It would take me an exceptional amount of time to get a permit out. I always had to throw the original permit away and start over, sometimes more than once. One time I was writing a permit for an electrician at the permit window, standing up, and when I came to my senses, I was telling him to make sure he had a hazardous waste dumpster to dispose of his trash. He backed up from the window and said, “Hold on a minute, all I want is a permit to change some light bulbs.” I was very embarrassed and almost cried.
I also started having hallucinations. I have had the same combination lock for 27 years at work and one day I simply could not open it. I could see two locks and I kept trying both of them, but neither would open. I remember thinking I must be trying to open the wrong lock. This was very disconcerting and I finally had someone open the lock for me. I had my son convinced that our house was haunted because I saw ghosts all the time. I would actually walk around them.
There were many other episodes, here are a few:
One of my outside operators was sitting in a chair beside my desk and I was having a conversation with him about some outside activities that we were engaged in that shift. I either fell asleep talking to him or blacked out, but the next thing I remember was telling him about some venetian blinds. He was shocked and wanted to know what the matter with me was.
I was sitting at the Top Operator desk monitoring a unit we were shutting down when the Console Operator called for the Outside Operator to shut down the air compressor. She came in the control room and asked me if she should shut it down or just unload it. I started telling her that we would need the air later on to hold temperatures so she should just unload it. When I came back to reality I was telling her to make sure she mud washed the steam drum. Of course, this had nothing to do with the unit we were shutting down and everyone in the room looked at me like I was crazy and wanted to know what was wrong with me.
There have been many times that I have made people wait, sometimes over an hour, because I could not stay awake and do the work they needed done. This is very embarrassing. Many times I have fallen asleep on the phone receiving operating instructions and had to call back and ask them to tell me again because I did not know what they had said. I fall asleep right in the middle of conversing and can’t control it.
After explaining to my doctor that I just could not stay awake he prescribed medication. Even after starting the medication (that cost $613.00 for 30 pills) I had episodes. Once I came to at the computer studying a new operating system and just got up and went to the bathroom. When I got in there I realized I did not have my belt on. I went back to the desk and it was curled up in the top drawer. Could I possibly undress completely while at work?! And never know it until it was too late?
I have fallen asleep many times driving home from work. I fell asleep 5 times on a two and a half hour drive after I started taking medication.
Whenever I try to focus on something, maybe balancing the check book, reading the paper or mapping my route for garage sales on Saturday, my eyes start to blur and I find it impossible to stay awake. I’ve actually gotten pretty good at sleeping while sitting up.
My mother says I fall asleep all the time and make furious jesters and talk to her while asleep. I have very realistic dreams and sometimes tear things up. I ripped one of the keys off the keyboard of the computer after falling asleep working on the computer. I have had vivid dreams involving something getting inside the CPAP machine hose, broken the equipment and had to find replacement parts. One night the CPAP hose was a snake and a very real one at that.
I went back to my doctor and asked for another prescription because this medication was not working. He prescribed a medication that my insurance would not approve without a diagnosis of ADHD, Narcolepsy, or MS related depression. I don’t mind paying for the medication, but I want what I do pay to at least be applied to my deductible so the medication must be approved by my insurance.
The first doctor sent me to another doctor and that doctor sent me to another. At this time I am seeing a sleep disorder specialist once a month and taking still another medication for narcolepsy. He has deemed me permanently disabled. I have started the application process to receive Social Security Disability Benefits.
Narcolepsy has changed my life completely.
