Because I value my friends here I felt the need to address something that has cost me friends before in my life.I have 4 sleep disorders. Narcolepsy is the worst that I live with and has cost me those friends... Narcolepsy Sleep Apnea Cataplexy Restless Leg Syndrome **see definitions and info below my story** Sleep apnea of course is stopping breathing when you sleep...note: this can also happen in the daytime if you are doing any sedentary task, such as office work, writing, anything that slows your brain activity, some call this daydreaming or spaced out and so on. Narcolepsy I have included narcolepsy info below as there are so many things associated with it. I was diagnosed with narcolepsy and sleep apnea in 1987 closely followed by cataplexy and restless leg syndrome. I will focus on the narcolepsy first as it is the one that some say makes me antisocial or weird or split personality. If people would take the time to educate themselves on a persons disability/disease then perhaps they would understand that none of those terms apply. It is my understanding that you are born with this disease and it may take years to manifest itself but it worsens with age. I was 40 years old. The only reason I was diagnosed was because I finally found a doctor who listened to my symptoms and took the chance to refer me to Swedish Hospital in Seattle, I underwent several tests and about 35 pages of questions that determined what tests I needed. I was also told by my then doctor that I was an atypical narcoleptic. In other words while I met much of the standard criteria for narcolepsy while other symptoms I had were very different. An example of that is where most people literally fall asleep, I have only done that a couple times. Instead, for whatever reason my brain just checks out, sometimes only a couple seconds other times 15-30 minutes. In that time I continue to do what I am doing (automatic behavior/robotic). For normal things that I have done for years such as washing dishes, I can do them sound asleep, eyes wide open but I don't realize what I am doing and most times do not remember that I did it. Its very confusing because sometimes someone will tell me I did something but I have no memory of doing it and don't believe them. My symptoms are worsened by stress. An example of the dishes 'checkout time', in Seattle I had a garbage disposal...my brain checked out and I 'awoke' just as I was putting my hand in the disposal while it was running! I awoke because my cat knew intuitively that I was asleep and he grabbed my leg with both paws and pulled hard, it was enough of a surprise that I woke up and pulled my hand back...Oh how I loved that cat! He always knew when I was in danger and always did something to get my attention! Being 'woken' sometimes scares me and I will jump or lash out with my arm or hand. This is not an easy disease... On one hand it does make me what you would call antisocial because you are always tired, don't want to go anywhere or do anything and it gets worse. Conversation whether it is verbal or written (email)starts out normal enough but when my brain checks out, my subconscious takes over. What comes from your subconscious starts out like you want it to (you think) but comes out different, maybe not even related to the conversation. Sometimes it comes out very harsh, its not my intention, its just how it happens. I wish I could make people understand I can't control these things, sure would make living with narcolepsy alot easier:-)Some is partly controlled with medication and sleep behavior such as going to bed at the same time, taking small naps several times a day but again, all of these things worsen with age. I recall watching a documentary on narcolepsy where a man was in a home as it became so severe he could not funtion safely in a normal life. His wife would go to visit him and ask him to play the piano for her, he always said he didn't know how to play but then would in just a few minutes sit down and play...he was a concert pianist but did not have one memory of having ever played. He did not know the woman was his wife, did not know he had children until a little burst of memory for a minute and then right back to having forgotten again. I have lost friends because they tire of inviting me somewhere and hearing me say no...or for saying something that I was totally unaware of saying or how I said it. I became a recluse in the sense that I only went out to go to the doctor. An example of my brain checking out at a most inopportune time, I had to appear in court and I was coached over and over what to say and knew it by heart but when I was faced with answering the questions I couldn't, could not remember one thing. And at the swearing on the bible, was told to raise my right hand, a pregnant silence filled the room, the judge again said raise your right hand, again silence...then someone reached over and shook me, I had my left hand raised but was totally unaware...Funny, I remember embarrassing moments like that later very well, but short term memory is lost about 80% of the time. I write myself notes, lose the notes or if I take a list to the store I forget that I have it. Sometimes I get so frustrated I think life isn't worth living if I have to live this way, suicide is a side effect symptom of narcolepsy because of depression. I don't see myself as depressed, but I do see myself as not fitting in anywhere, not quite as smart as others. I know that I am fairly smart, I just think I'm not...As for not fitting in, thats because of having to converse with people and never knowing if I am going to offend someone or say something so weird that I come off as being crazy...I hate this disease with a passion and I struggle hard everyday to not let it rule me but there are those times that I simply can't control it even with medication. I have been rated as a severe case but I choose to fight and sometimes that fight leads to more 'check outs'. I take a controlled substance that is supposed to keep my brain alert, occassionally I have to do without it and when that happens I am sleeping alot and avoiding people as much as possible because I become very irritable. The thing is I really love people and life, I have a huge heart that lets everyone in and every animal and consequently I get hurt...I know its going to happen but I can't stop it...I had friends online and offline who have closed the door on friendship because they just do not understand and don't want to deal with me. Just because I can't answer every email or be here every minute or go somewhere. I don't understand why no one will try to understand that I would love to do everything I am asked to do, answer those emails and just live a normal life like they do...I simply can't...I am not feeling sorry for myself, thats another one that gets thrown at me all the time...I am simply asking those who know me to educate themselves and then to use some compassion. If I am not there mentally, don't hold it against me or think its a personal assault against you, take the time to remember its not me, its the disease. I don't think I was given this cross to bear without something good coming out of it at some point. Maybe now is that time, maybe I was given the mission to tell my story so someone else would realize that they may be turning their back on someone who is worthy of their friendship. I don't do support groups because they put me to sleep but there are good support groups out there for those whose case is not as severe as my case is. If you are depressed get help, don't fall into the suicide mode, there is no turning back from that action. I have worked with Alzheimer patients and I must say that narcolepsy is very close to that, at least it is for me. They hate whats happening to them as much as I hate this and they live with fear even more than I do, of being alone, unwanted and unloved. Of embarrassing someone, of lashing out at someone, at saying things that don't make sense or doing things that don't make sense. Just a little about sleep apnea, stopping breathing in your sleep kills brain cells. I know that contributes to the atypical behavior of those with narcolepsy. I was stopping breathing 110 times a night sometimes...from just a few seconds to over a minute. I used a cpap machine to aid that but I am certain that I lost alot of cells in my lifetime prior to the diagnosis and treatment. That has to make a big impact on a persons mental abilities and contributes to daytime sleepiness. There is also the circadian rythym, thats your internal clock...mine is backwards...I am more alert at night than in the day. I worked swing and graveyard shifts because thats when I was most awake... so I am fighting the natural order of sleep, for me its sleep in the day, stay awake at night but thats not the acceptable mode for society in terms of many jobs, school etc. Well I am sure you are bored to death now so I will just mention that cataplexy can be very harmful, see below. And restless leg syndrome, how do you rest well if your legs are constantly moving in your sleep? Please don't feel sorry for me, I don't want that, I want people to get educated so they can help themselves and others around them. You may think, why should I educate myself when I don't know anyone with this...you know someone now:-) And you never know when this or another neurological disorder will cross your path. Education is the key to everything, that includes helping our fellow man and you never know, something similar may happen to you or someone close to you. Thanks for taking the time to read this. I hope you gained some understanding of why I am 'different'. I love each and everyone of you because thats who I am, I may not like what you do ( that doesn't mean I won't tell you if I think you are wrong) but I accept you as you are and I hope that you can accept me as I am. Peace! Symptoms of narcolepsy include (each of these are discussed in detail): * excessive daytime sleepiness * cataplexy * hypnagogic hallucinations * sleep paralysis * disturbed nocturnal sleep * automatic behavior * other complaints such as blurred vision, double vision, or droopy eyelid Excessive daytime sleepiness is present throughout the day but the patient, with extreme effort, may be able to resist the sleepiness for some time. Finally, it becomes overwhelming and results in a sleep episode of varied duration (seconds to minutes). In addition to daytime sleepiness, repetitive, irresistible, and unintentional sleep attacks may occur throughout the day. Excessive daytime sleepiness usually impairs a patient's functioning because it reduces motivation and vigilance, interferes with concentration and memory, and increases irritability. Cataplexy Cataplexy is a sudden, temporary loss of muscle control in a person with narcolepsy. An attack of cataplexy usually is triggered by strong emotional reactions such as laughter, excitement, surprise, or anger. Factors that contribute to the attacks of cataplexy include physical fatigue, stress, and sleepiness. Severe attacks of cataplexy may result in a complete body collapse with a fall to the ground and risk of injury. Milder forms of cataplexy are more common. These involve regional muscle groups and result in symptoms such as a drooping head, sagging jaw, slurred speech, buckling of the knees, or weakness in the arms. This muscle weakness can be quite subtle. The patient is conscious but usually unable to speak. Cataplectic attacks may last from a few seconds to several minutes. They may vary from a few per year to numerous attacks per day that could disable the patient. Cataplexy, hypnagogic hallucinations, and sleep paralysis in patients with narcolepsy are referred to as REM related abnormalities because they are caused by REM sleep intrusions into wakefulness. Disturbed nocturnal sleep with frequent awakenings and increased body movements may develop after the onset of the primary symptoms of narcolepsy. Automatic behavior may occur in 60% to 80% of patients with narcolepsy. Automatic behavior is when patients carry out certain actions without conscious awareness, often with the unusual use of words (irrelevant words, lapses in speech). This behavior occurs while the patient is fluctuating between sleep and wakefulness.