Narcolepsy is a neurological condition most characterized by Excessive Daytime Sleepiness.
So sorry to hear that those close to you, and in a position to understand, are not there to support you. I guess for my kids it has been a way of life to which I was just able to attach a name. My husband calls me high-maintenance and I remind him I could live up to that! He is "high-maintenance" as well (sorry guys) as he is male. I like this forum as one can express the frustration involved with narcolepsy. Until if affected me, I did not understand it. There are some things best not shared with some people. I am not a proponent of ignorance, though in some cases, it works out very well Please don't let their resposes and reactions get you down.
Sara, you are fortunate to have been diagnosed so early in life. I had such a difficult time in high school (brief addiction to No-Doz) and college (I suffered stomach aches from eating Tic-Tacs and chewing gum to keep me awake in classes). I was not diagnosed until my late forties. Only my husband, children and a couple of extremely close friends know of my true diagnosis. I have not told work or other public outlets on the advice of my doctor who let me know I might have a difficult time. I was concerned that some friends might not let me drive their children out of ignorance. My odd hours, sleeplessness and sleepiness are explained as a "sleep disorder". I, too, do not have cataplexy. As far as the rest of my relatives, it has not been worth telling them. All I would hear is nonsense based on their perceived knowledge. They would all start playing doctor and any move I would make off the straight line would be blamed on narcolepsy. My children and husband are much more understanding. I have learned that sharing everything is not always a good idea. If I am tired or I feel like I am on the way out, my husband knows the look and I just go into another room and lie down. Some family members think I am "escaping" and a bit odd, but that is preferable to me than the alternative. I love my relatives, though I love my privacy and self-esteem more. It is time for some quality sleep!
Thank you Westerg3. I have to be more aware. I think I can get through it and the next thing I know, I am asleep. This is especially true if I am on the phone with a friend who is a chatterbox. If I can be active and talk, I can stay awake. Constant listening puts me to sleep. The same happened in high school and college. I chewed a lot of gum to stay awake. I don't like to chew gum at home. I have not told anyone outside of my immediate family about the narcolepsy. I have told friends I have a sleep disorder. I wish I could relax on the couch when talking on the phone sometimes, but I guess I'll have to stick to activity as you have suggested. Thank you.
Standing up and walking has helped me quite a bit. For people that know I have narcolepsy, I don't really have to explain. In situations where I don't want to explain, going to get a drink of water or going to the bathroom seems to work.
I still haven't figured out how to handle the sleepiness in the middle of a converstation. I've fallen asleep on the phone when I feel wide awake. I feel it coming and can't do anything about it. I've learned to tell my husband and children. (No cataplexy.) I don't tell many people as they are afraid of narcolepsy.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
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Created by dzeldaz | Last updated 12 Feb 2012, 07:49 AM
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