Title: Educating others
Toph4er - December 6, 2006 07:15 PM (GMT)
Ok, lets make this thread here explaining what living with narcolepsy is like, so that you can show others and maybe teach them what a walk in our shoes is like.
I'll start with the average day to day, and then the jokes.
Mornings suck. When I wake up I am unable to move for a while even with my Imipramine, which does help a bit. (Imipramine is meant to prevent the nighttime hallucinations and nighttime paralysis). I can sit up in bed most of the time, but its my legs that can't move, and the rest of my body is weak. I take this time while I cant get up to take my medicine with a Boost in the minifridge next to my bed (a good idea ^^). Once I do get up I am still not always awake. Throught the day, regardless of how the morning went, I am prone to sudden weakness at any moment. I drop things often, so I don't carry anything all that dangerous or fragile (particularly knives and plates and such) for any great distance. I sometimes fall partially asleep in many situations. The worst being lectures, but it also includes reading, conversations with friends, typing on this board :lol: , walking, and if I were driving I might fall asleep then too. It is dangerous for us to drive, and you (the person bein' ed-ju-cated) need to be aware of that, and we should not drive unless we are certain that we are awake, on our meds, and of course with a doctor's clearance. Even then it is dangerous to drive for any length of time. Thats all I can think of there.
With me at least, you can use any sleep related joke. While my mind just got wiped of them, I'm sure you can think of some ^_^ . The more lighthearted you make it the better your relationship should be. Thats not to say it's gonna be a cake walk, believe me there will always be difficulties.
Yup thats all I can think of, anyone else?
phoe - December 7, 2006 01:14 PM (GMT)
I am very lucky. My mornings aren't nearly as bad as yours. I wake up. I make myself get out of bed. I take my med. I either walk on the treadmill (if I don't feel like I am going to pass out) or I play around on the computer. I have to give myself 2 1/2-3 hours in the morning to get up and get ready for work. If I wake up late it stresses me out. That makes me overwhelmingly tired which makes me even later!
I have post it notes and various notepads everywhere. I keep a notepad in my purse and in my pocket at all times because I can't remember things. I also found that I have to write the date on the notes and be pretty detailed or I can't remember what I was thinking when I wrote them. My notes drive everyone nuts at work because I tell them if it isn't written down, they cannot expect me to do it. (I am one of the bosses so I can say stuff like that.)
I make a huge effort to avoid confrontation because then my speech slurrs and I drop things and my knees buckle. I am lucky because I work for my brother so he takes over for me when I am having trouble. When I start to feel that wave of sleepiness hitting, I almost start to cry because I am so frustrated. He steps in and I go take a nap. I don't think I would make it if I didn't work for family!
It is a huge problem in my marriage. How things really are and how I perceive them to be are probably two different things. I try to keep that in mind before I say what I am feeling. Since I am sleep deprived, I am depressed and not always rational. I feel defective and I have to spend alot of time making an effort to look on the positive side of things and stop feeling sorry for myself.
My family is pretty good with it, except they keep thinking that I am going to get over it. Since I an not getting over it, they keep suggesting to switch Dr.'s, etc. The more info on narc. I give them, the more they say how I need to find a better doctor to fix this. I quit giving them information because I think it scares them.
Then, I take a nap for a few hours around 7:00 pm. Then I settle in bed for a fun night of hallucinations and paralyzing sleep. It could be worse!
sam.toombs - December 7, 2006 05:50 PM (GMT)
My mornings are different to that (again just showing how this effects different people) i chose the rather risky path of taking no meds what so ever. The only thing i take are herbal remedies, St Johns Wort for depression (not too sure that it works but it keeps my mum off my back) and Ginseng for sleepiness (it works well for me to an extent so long as i am not stressed or overly tired, if it is an average day it works fairly well)
When i wake up in the morning i can not move straight away, it is not always to the same extent sometimes it is half an hour sometime it can be 2 hours of hallucinations and paralysis, no matter how many time it happens you never get used to it. I have to give my self a lot of time to get up in the morning at least 2 hours.
I have to walk to where i am going because i refuse to drive, i just don't trust myself. i always listen to music to help me not drift off. I have almost been run over on numerous times because i have gone into an automatic state and walked into traffic.
Because i am on no meds i have to take each day as i find them, the cataplexy and the pain i get is the worst. i find the more tired i am the more my body aches and demands to go to sleep.
I do find taking the condition lightly helps, i joke about it and try not to take it that seriously, if you are in the right frame of mind it can be funny. Negative emotions like hate and anger trigger my cataplexy so i don't want to be like that. I don't want to be pitied so laughter is best but i don't want to not be taken seriously so it is about striking the right balance.
Toph4er - December 7, 2006 08:56 PM (GMT)
Looks like long mornings all around :D,
Gah I noticed one of you as I was reading through complaining about dropping things, and now I can't find it. Either way, I have the same problem. I referee soccer (I don't let anyone know my condition...) and I cannot tell you how many times I have dropped my card book, my flags, my coins, my pens, anything! Really I don't do too bad as long as I have my meds. Also I have found, since we have maybe 10 minutes of time to sit throughout the day (which is sometimes 6+ hours), that being on my feet a long time running around and focusing on the game actually helps me stay awake. Does anyone else have something like that, where activity helps them focus?
Oh, it was Phoe who mentioned the dropping and speech slurring, of which I do the same thing. (^_^ :( whichever applies....)
Anyone else wanna put in their 2 cents (or like 39 cents at today's rates lol),
phoe - December 13, 2006 12:58 PM (GMT)
I have found the same thing. Being on my feet and being focused on an activity is definitely better. I am on my feet all day at work. Most of it is by choice. When I feel really tired, I will fall asleep when I sit down. If I am on my feet, I try to "walk it off" and it helps. I take my lunch very late if at all because I get that overwhelming feeling of the need to sleep. I have trouble getting in the swing of things after that down time. If I eat at work I can eat standing up - I assume people look down on stuff like that in a restaurant.
I think that is also why I have a love of books on disc. I love to read but I can never stay awake. Now I can listen to them while I drive or clean the house. We must need a different kind of brain stimulation than those without narc.
If I am angry, forget it. After I drop a few things, I know I need to leave the situation because I don't want to collapse in front of anyone. Although, what a great way to win the argument!!! I have only done it in front of a few people and they thought I was having a stroke (since I have trouble speaking and lose control on one side of my body). Ahhh - Good times!
Toph4er - December 13, 2006 11:29 PM (GMT)
|If I am angry, forget it. After I drop a few things, I know I need to leave the situation because I don't want to collapse in front of anyone. Although, what a great way to win the argument!!! I have only done it in front of a few people and they thought I was having a stroke (since I have trouble speaking and lose control on one side of my body). Ahhh - Good times!|
If you'll pardon the acronym, lmao. Good times indeed!
sleeping beauty - December 15, 2006 04:53 PM (GMT)
Mornings? I can't even get awake enough to take my adderall sometimes! I keep somebody mad at me all the time for not being awake enough to be somewhere I'm supposed to be or not getting something done I'm supposed to do. Somebody asked me recently" What do you do all day?" I had to say" I don't know."Evidently I don't do anything. I sure can't see anything I have accomplished. I fall asleep typing these posts several times. It's hard to finish them. If they they sound like I typed them in my sleep,that's because I did! :blink:
Toph4er - December 15, 2006 07:22 PM (GMT)
|QUOTE (sleeping beauty)|
|I fall asleep typing these posts several times. It's hard to finish them. If they they sound like I typed them in my sleep,that's because I did! :blink:|
Eh, welcome to my world! Ok, so I think it is well agreed that mornings suck and people need to understand that. What else is there for ya guys/gals?
O yea, has anyone shown anyone else this thread yet? (spouses, siblings, kids, other relatives, friends, teachers, the list goes on :P)
Toph4er - July 19, 2007 06:49 PM (GMT)
People must know! Continue to bring the truth of what narcolepsy is like! Keep this thread from dying!
helgar - July 23, 2007 07:43 PM (GMT)
Hi, It's Helen here, Garry my husband has Narcolepsy and I said I would type etc., for him, as he finds it hard to concentrate.
We have been trying to educate as many people as possible in our area. Not everyone understands, as I am sure a lot of you already know. We have also come across quite a few people who just don't want to understand, a few of those are family which are a shame (some people are frightened to come to close in case they catch it!! - their words not mine).
Garry's Narcolepsy Specialist asked if we would be willing to put our names forward to the media to educate people as to what Narcolepsy is and also to discuss medications. We have done this a couple of times this year. We had an interview with the local radio station, also the local TV station which has now put the interview on the national BBC website, discussing Narcolepsy and the effects and also discussing the new drug Garry is taking 'Xyrem'.
This week we have had a medical company get in contact with us via Garry's specialist, they have done a case study on Garry and the effect of Xyrem as well as life with Narcolepsy, in the hope that our Health Authorities through the country will start to offer other Narcoleptics 'Xyrem'. Garry along with nine others have been guinea pigs for this drug and it has worked exceptionally well on everyone, unfortunately after the 'practice' year was up they stopped supplying the 'Xyrem' to eight of the people because it cost too much. Garry has been very lucky and our health authority will supply it as long as we collect it which is about a four/five hour journey every six months or so.
Apparently the medical company who have done the case study are offering the interview to different types of media through the country in the hope of helping and promoting the drug.
abbey - July 24, 2007 05:57 PM (GMT)
this is a really good thread
I was in denial that I had true narcolepsy. but everyone has the same symptoms as I ...too a different degree. I became symptomatic with daytime sleepiness when I was 18. I was actually a hyper child until I had mono. Then I always slept on the way to school and did not function in the mornings. never got anything out of my morning classes and usually ended up skipping them in college.
I worked evenings for 10 years and have been working part time nights for the last 2 years. I do not functional well in the am. not til noon. I make bad choices in the am ... not awake yet.
I have dropped things for years and have a poor memory. I do not have cataplexy to the degree that I cant move just get muscle tiredness and then pain....which goes away if I rest for 20 min.
I have noticed the slurred speech too. I am lucky not too many nightmares and hallucinations. But I feel sooo much better on meds .
nice to know I am not the only one. look forward to reading others stories.
Toph4er - July 26, 2007 12:13 AM (GMT)
Mono eh? That makes good sense as a trigger. I'd imagine that most of us have has something in our past that has set off the narcolepsy. Myself, I have a history of seizures. Also, Helen and Garry, I appreciate what you're doing there. Just keep it real and don't let them feed you crap, go off how you know you feel. Don't let them turn it into a comedy fest or continue the choose to be lazy route :).
zktmom - September 29, 2007 06:16 AM (GMT)
This is my mornings. If I am startled awake by someone's alarm, noise, movement, I will have a Sleep Paralysis episode. Sometimes I can actually hear myself snoring too, and I am conscious.They can last anywhere from 15 minutes to 3 hours. If they are long, I am drenched in sweat. I am usually in a very uncomfortable position which hurts, and sometimes partially cuts off my airway. I cannot move anything accept my tongue, and my eyes. It feels physically like someone is pressing me into the bed. My mouth is usually so dry that my tongue is stuck to the roof of my mouth. I can breathe out of my nose and mouth. I can make noises to gain the attention of my family. They have learned to check my neck, to reposition me so I can breathe. I now have a Baby Monitor on in my room all the time.
When the episode passes, it feels like I have had a tough workout. Every muscle in my body hurts, aches. I feel stiff,and it is hard to walk straight. I often feel dizzy. If I close my eyes for a second, it feels like I will pass out. I remain drowsy and spacey the rest of the day. I cannot concentrate on anything, accept trying to stay awake. If I do go to sleep later in the day, I will have another episode.
I once had an episode in the bathtub while I was alone in the house. I could see myself slipping lower,and lower into the water, and I could do nothing to stop it. The water was right below my nose, rippling out with every breath. Thankfully, my 18 year -old son came home early for work and found me. I could hear him later,after he let out the water,and we were waiting for the episode to pass, crying in the next room.
I have had a daytime episode at the Grocery store. I realized I was too tired to drive,and called my husband at work. I only managed to tell him where I was. I had to sit myself down,and pray no one called an ambulance before he came. He had to take a car from work to get me, as I had ours. He could have been fired for that.
I have had to leave my sons at school alone, until someone found me having an attack, and could call my husband, or went to pick them up. I have stood up their teachers. I have missed their graduations. I have missed their trains. I have let them down because of these attacks, I can't even remember how many times.
I have had cataplexy attacks,but at the time, had no name for them. I thought I fainted. Recently I had gone to the movie theatre with my husband. Five minutes into the movie there was a rape scene, and I felt a little nausea. I excused myself to go to the washroom and made it as far as the outside of the theatre we were in.(It was a multi-plex). I collapsed on the floor. A man saw me, and asked me if I was alright. I managed to tell him my husband was inside. He came out, but as neither of us had experienced this before, the ambulance was called. We have not been to a movie since.
I had an episode with my Mom while she was driving. I told her I thought it was coming on,and tried to reassure her that I would just be sitting there in the seat having my Sleep Paralysis attack, but would come out of it ok. On seeing me, she panicked. She began racing for the Hospital,passing cars and laying on the horn. I could see all this, and I thought she was going to kill us. Well, when we got to Emerg., the ambulance attendances were there, so she got out of the car and asked for help. They came over to the car, could see that I was conscious, and couldn't understand why I would not get out of the car. Eventually they got me into a wheel chair ( which I kept pitching forward out of) and into an examining room. They looked at the bed and asked for it to be lowered, but it was a trauma room with the table at a fixed height. The female attendant actually said to the nurse:" we can't get her up there, she's a BIG girl". Here I will add, I am only 10 lbs. over ideal for my height. I am conscious, and can hear everything. I have been subjected to much more humiliation and indignaties than I can talk about from healthcare providers who don't seem to realize that when someone is conscious, they CAN hear and feel.
I have had people pour juice and coke down my throat thinking I am slipping into Diabetic Coma, nearly drowning me. I have choaked on sugar pills people have slipped into my mouth. I have had people call me a drunken *bad word* at a party when I collapsed on their coats and they found me when they wanted to go home. I have been called lazy, accused of trying to slack off at work, crazy, stupid, ect....
Right now, I am unable to work. I have been off work longer now, than I worked there. They haven't fired me yet...My husband has such anxiety over our finances that he doesn't sleep. He is worried and surly. He looks and feels tired all the time, too.
I am still waiting for a Sleep Study. I have not been able to convince my Family doctor to refer me to a Neurologist, and the Neurologist will not see me without one.
Now, I had Mono as a 10 year-old, about the time the symptoms started. I also had it again about 12 years ago, even though you are only supposed to get it once.I also was in a serious car accident (not our fault) where I suffered head injuries. I also come from a family of snorers,I was a sleep-walker until age 5, and my maternal Grandfather walked and talked in his sleep so badly that he couldn't go overseas in WWII because he was a security risk!
I have been told, that at my age (43) that the symptoms of Narcolepsy should be tapering off and disappearing!
I have to laugh. :wacko:
sleeping beauty - September 29, 2007 07:34 AM (GMT)
Well, there's your problem right there, family doctor and neurologist. If it was left up to family doctors, NOBODY would EVER have been diagnosed with N. And since most neurologists don't specialize in sleep disorders, they're even worse. What you'll have to do is bypass them and find a sleep specialist. A lot of us use pulmonologists who specialize in sleep medicine. Pulmonologists tend to be pretty good at diagnosing and treating sleep disorders. The ones who specialize in it, that is. Not all of them do. I didn't need a reference to get in either. Call your local hospital and ask for the reference desk. They can probably help you.
Toph4er - September 29, 2007 07:33 PM (GMT)
Umm, my family doctor is the one who sent out for a sleep study at the suggestion of my psychologist, because the neurologist wouldn't (I got to her because of seizures) because she was convinced the first time she saw me that I was depressed and that was that. So, I see a different, and far better, neurologist for the seizures, and a pulmonologist for the narcolepsy (he is the best ever :)).
sleeping beauty - September 30, 2007 02:08 AM (GMT)
Forgive me if I tend to over-generalize. I've been through dozens of general practitioners(including my family doctor)and neurologists, all of whom treated me in a very unprofessional way. I've been misdiagnosed, scolded, laughed at, made fun of, called a liar, and accused of every kind of drug addiction by these doctors, so I admit I am a little sensitive on the subject. I'm sure there are some excellent GP's and neurologists out there. I just didn't have the good fortune to meet them. I hope they will forgive my comments.
abbey - October 1, 2007 02:42 AM (GMT)
I am curious about seizures.... i have not had severe cataplexy. but with a history of head injury ....some of your attacks are seizure like....you definitely need to get diagnosed..... we are here for you.... good luck
nearsirius - October 1, 2007 07:36 PM (GMT)
My alarm goes off and I hit snooze because most of my body is aching and tired and I usually can't move my legs without a lot of effort and even then they hurt. So I hit the snooze and when the alarm goes off the second time I usually get right out of bed. Other times I haven't really been asleep anyways, so getting up is a relief to swaying in and out of dreaming. My alarm gets louder gradually because if I awake suddenly I get really confused and can't tell the difference between my dreams and reality. I also trip, fall and bump into things a lot when I awake too quickly. So I get out of bed but I'm really not entirely "with it" I go take a shower and usually lay back down again for ten or fifteen minutes (repeat alarm senerio). I get off to work, walking or on bike - Sam I also seem to start to walk out into traffic a lot automatically - less so on my bike. During the morning I keep busy but around eleven or noon I start to fade and lay down for twenty minutes on a couch in the lounge for a nap. I feel lucky to have an employer who allows me this time. If I get embarrassed or laugh too hard I get weak and collapse or start to lose control of the muscles in my face. I drop things a lot and my memory is bad. I run a vet clinic, so it can get ugly when I can't remember what someone said five minutes ago on the phone. I just write everything down. I have to also keep a calendar, because I forget what I have scheduled on what day. I try to stand a lot or sit cross-legged on the floor when I'm with friends because I'm less likely to fall sleep. If I get nervous and its too quiet I ramble a lot to keep from falling asleep but often times I drift in and out of sleep and talk a bunch of gibberish, my friends think this is hilarious (me too!). I would say my life is so much better after Provigil, biphasic sleep, vitamin C and one other thing that I will actually bring up in the "questions" section. I used to not be able to stay awake during class, in cars or any other time I was seated. I also could not sleep at all on my own. I would toss and turn and be awake most of the time only to fall asleep later in class or while with friends. I tried to regulate this by making myself stay awake, but it didn't change a thing. I had a hard time in college even though I got excellent marks, a few teachers were really really harsh on me due to the fact that I'm physically expressive (i.e. I got stereotyped for piercings and tattoos and strange ideas - even though I myself initially brought up my problems which at the time were diagnosed as depression and mania - I'm very very hyper when I've had adequate sleep). I feel like we have to educate people about narcolepsy and I'm not sure why people aren't more fascinated with the disorder. I know that everyone on this post knows how frustrating, painful, emotionally straining, and never ending narcolepsy can be, so fascination may seem out of line... but I think being fascinated with it makes it more bareable for me. The more I uncover the more I feel like I'm in control, not the narcolepsy (even if I've changed my schedule to make it that way :) ) I also think we do need to be proud of ourselves for what we accomplish. I am so proud of myself for making it through college without meds. It was definitely a chore when most of the time I was asleep in class.
SleepyAVON - April 15, 2008 04:57 AM (GMT)
I live for educating others about N, fibro, and RA. My whole day is pretty much a sleepy fog. I have several naps a day, and am in alot of physical pain--fibro and RA. I love going online and getting out when I can. My cataplexy is alot better with Xyrem and Effexor XR. We struggle and fight over the lack of money alot and that adds stress and worse symptoms, but I always try to be the best I can.