- Posted January 26, 2014 by
San Antonio, Texas
This iReport is part of an assignment:
Living with a rare disease?
Wide Awake Sleeping/Living with Narcolepsy
Hi. My name is Cindy, I live in San Antonio, Tx.
\In 2006, I worked nites about 20 miles from my home. I would sometimes get off around 1 am. I had started experiencing excessive sleepiness while driving home, to the point I would have to pull off and rest awhile. During the day all I wanted to do was sleep. I didnt think much about it at that time, just thought maybe working nights was beginning to wear on me. One evening at work, I collapsed, nothing could be found wrong with me. All the while I kept having these attacks of severe sleepiness. About a week later after the collapse at work, I went to my primary care physcian who said it seemed like severe depression from things that were going on in my life at the time. So he referred me to a Psychiatrist, who did put me on an antidepressant along with another medication to help with my excessive daytime sleepiness. I was forced to leave my employment after many years, I no longer was able to work at this point. I was devastated. The sleepiness was somewhat controlled with the medication but would still occur. I at least could function a little better.
In 2009, I went back to my primary doctor because the sleep issue was getting out of control. I even was getting to the point when I drove during the day, I was having to pull over and sleep. He felt at this point, I probably had a sleeping disorder and referred me to a Sleep Specialist. Within a week later, I was in to see him, he ordered a 2 part sleep study to confirm the possibility I was suffering with Narcolepsy Disease. Within the next week, I went in one evening for the night portion of the study, stayed till 5 pm the following day, taking naps every 2 hrs for only 15 min at a time. Do you know how rough that was when I couldn't even take any medicine? Honestly, I would be asleep before the Tech would come in and say, "Ok, nap time" I had to take 5 of those naps till I was completed at 5 pm. I remember, half way thru the day, I told the Tech, I am too miserable trying to stay awake, I cant have my meds, I just want to leave and not finish. Course he advised me, I would just have to come back and have the whole test done again. So I stayed there, but so miserable. All I wanted to do was sleep! Within a couple of days later, my Sleep Dr. had called me and said, " Yep, Cindy you have severe Narcolepsy. One of the worst I have seen so far." So that really made me feel even better. He had me try a few other medications to help control it better, but I didnt do well on them. So he kept me on what I had already been taking, which is 2 different medications and I alternate them. They seem to help alot. At least I can function now.
So that officially started my journey on living a life with Narcolepsy/Cataplexy.
To briefly explain, for those of you who are not familiar with Narcolepsy/Cataplexy,: Narcolepsy is a neurological autoimmune sleep disease in which the brain loses the ability to maintain normal sleep and wake states. It affects 1 in every 2,000 people.
Cataplexy is a a sudden loss of muiscle tone while awake, resulting in the inability to move. Strong emotions, such as laughter or anger, will often bring on Cataplexy. Some, but not all people will fall to the ground and stay paralyzed for as long as several minutes.
I do have a mild Cataplexy, with just the loss of muscle tone. You can have Narcolepsy with or without Cataplexy. Narcolepsy is a chronic lifetime illness that there is not cure, only treatment to help with some of your symptoms. Narcolepsy is a nervous system disorder, not a mental illness. It is so under-diagnosed and misunderstood, so many people have always heard of it as being the fall asleep instantly, but thats not just the case. There is so much more to it, that really is very interesting but is hard to understand.
When I was diagnosed, my life basically has changed forever. Although the medication does control it to an extent, I cant just live on it 24/7, so when the meds where off there goes my difficulties worse. I have to plan every single day around my medicine, from driving to just go to the store. There is not a time goes by that I drive that I dont have to pull over because I can feel an attack of. "N" coming on . It is very frustrating, I have had to pull over 2 blocks from my home before, because when you feel it coming on, you only have a few seconds to pull over. But, on the positive side, I thank God every day that I can still drive even if it takes me 2 hours to go 10 miles. There are so many with "N" that can not drive and are homebound. Those usually are the ones that can not take the medicine. Every single day, 24/7 I have the most extreme fatigue you could ever imagine. I basically am not able to even do my own housework and have to have someone come in to help. I cant do my yard work that I dearly love, I have a lawn service that takes care of it now. All these things to me have always been considered a luxury all my life, but now it is a necessity. I have had to change and accomodate my whole life around "N". I have had to except now, I will no longer be able to work. I have tried so many just part time jobs in the last 2 years, trying to find something I can do that "N" wont interfere. I even tried a cashier job, standing. thinking, ok I can do this. Well, never thought I would just doze off while I'm standing and helping a customer. Can you imagine the embarrassment? The customer even ask me "Are you ok? I just politely said, "Yes, just very tired. So needless to say that was the end of that job. When I finally accepted the fact, there was not even a part time job I could do was just 6 months when I was terminated because of attacks that I was having every day, but the last attack I had, my supervisor came to check on me right in the middle of one. I worked in a call center, just a few hours a day. But after an hour of being on the phone everyday I would have an attack with some Cataplexy. I would be reading a script verbatim to the customer, then all of a sudden I would loose all musle tone in my face and speech. I would stop reading in the middle of the script, I would be reading something totally off the wall that wasnt on the script, I couldnt focus my eyes, and my speech would be very slurred. It would last maybe 5 min. The day my boss came to check on me, I had been on that one call for almost 10 minutes, which does not take that long. I was still reading the script, but there was no customer on the other line. They had already hung up. I know, even to me its funny now, but at the time or when it does happen talking to people or even my family its not so funny and quite embarrassing. But you absolutely have not control.
I have fell out of a chair several times while I was asleep. I wake up when I feel and hear the thump on the floor.
Its an illness I would have never dreamed of having. I had always heard of it, but really never knew someone with it or exactly what it was. Still to this day, sometimes I have a hard really accepting or believing it. I keep thinking it will go away, but it doesnt. But I do know one thing, after joining so many support groups online, that I am definetly NOT ALONE. My family is so supportive of me. There were a little skeptical at the beginning, but now they have all seen it with me first hand, IT IS REAL. I see my sleep dr every six months now to monitor, and I try to make the best of everyday, because it can be so overwhelming at time. I have started doing some advocating on it and spread the word every opportunity I get to make people known about it and educate them. Its definetly been a challenge in my life and also to others in my life. There is alot of research on it right now, so hopefully in the near future we will have a cure or a better medicine to control it.
March 8, 2014 is Nat'l ""Narcolepsy Awareness Day" I hope you will join us on that day and SPREAD THE WORD. www.narcolepsynetwork.org more info