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I Am New....and Glad I Have Narcolepsy Because I Thought I Was Crazy


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#1 dawniebaby68

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Posted 09 November 2010 - 09:51 AM

Wow I am so glad for this site, I need to find some people that I can relate to. I am 42 and was just finally diagnosed with Narcolepsy after years of them saying I was just lazy, depressed, I did have anemia- so that was an excuse for a while, and the list goes on...finally one of my pcp said I want you to have a sleep study I think you have sleep apnea...that is how the process started for me over a year and a half ago. I am currently on FMLA and applied for disability. Its so bad, I have three young children and I cant stay awake, I am always dragging from the sleep depravation so I am cranky, to say the least, nothing gets done, until I am having a good day and I am lucid enough to get to the store to buy them food, or go get my meds. I have like three calandars around the house. I have been on provigil for about two yrs now, which works some of the time in small bursts, I cant take more that two because my insurance wont cover it, and Xyrem but still the same. So frustrated...thanks...

#2 Geohff

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Posted 09 November 2010 - 04:53 PM

Welcome! I hope you find the support and info you need here like I did. The best thing you’ve begun now to look in the right place and you will find here others going thru or have gone thru what you are and that’s comforting.

Again welcome!



#3 Irishhh

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Posted 23 November 2010 - 04:33 PM

My heart is heavy for you. I am 24 so I've been diagnosed young. I can't imagine what it must have been like for you all these years. Do you think you've had N (narcolepsy) for your entire life?? I think I have.

So it seems you've had your diagnosis for a while now, and you're still having trouble coping with it. I can't say that it will get easier for you, it may or may not. Some people are better equipped to deal with their illness and the symptoms. It's not that they are stronger or that you are weak, or even that your symptoms or better or worse than theirs are. The thing about N is that everyone experiences it differently, yet it's so similar for us all.

Really though, I am so saddened when I hear of another PWN (person w/ N) feeling so down. We all know what it's like because there are good days and bad days, but for most of us, it's mostly bad days. We aren't negative people, we aren't lazy, we aren't losers and abusers... We are lost in a world unknown to most. Everyone is confused in dream land, and that's basically where we all live.

I can't offer advice on children b/c I have none. You said you have three. How old are they? Male or female? I am heartbroken b/c I don't think I should have children w/ my illness the way it is. I honestly don't know where PWN's w/ kids get their strength.... but I wish I could find it. I'd like to have a family some day.

Your exp w/ provigil sounds similar to mine of nuvigil. Were you saying you are on Xyrem? I know it might be difficult for you, but what I do w/ the Nuvigil is take days off sometimes. Every week or two I take two days off of the pills. It's somewhat like I get a refresh. I've never experienced a recharge like the way I was when I first got the medicine... but it does make it work a little better. Also, diet and exercise.. I know, yeah right, exercise. But even if all you can do is get a bit of stretching in, it helps. It at least makes your muscles and bones feel a bit better.

It's a hard road you're on, but there are plenty of us right there with you.

#4 Irishhh

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Posted 23 November 2010 - 04:36 PM

Oh, wait, were you saying you started the process of diagnosis a year or so ago? or did you mean that you were diagnosed back then? I'm sorry, I got confused lol Welcome to Narcolepsy! It's usually like this :)

P.S. think of being grumpy like your children. How do kids act when they are sleepy and in need of a nap? The same way we do when we are! So try your best to have patience with them :)

#5 OPgirl

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Posted 27 November 2010 - 10:01 PM

Wow I am so glad for this site, I need to find some people that I can relate to. I am 42 and was just finally diagnosed with Narcolepsy after years of them saying I was just lazy, depressed, I did have anemia- so that was an excuse for a while, and the list goes on...finally one of my pcp said I want you to have a sleep study I think you have sleep apnea...that is how the process started for me over a year and a half ago. I am currently on FMLA and applied for disability. Its so bad, I have three young children and I cant stay awake, I am always dragging from the sleep depravation so I am cranky, to say the least, nothing gets done, until I am having a good day and I am lucid enough to get to the store to buy them food, or go get my meds. I have like three calandars around the house. I have been on provigil for about two yrs now, which works some of the time in small bursts, I cant take more that two because my insurance wont cover it, and Xyrem but still the same. So frustrated...thanks...



#6 OPgirl

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Posted 27 November 2010 - 10:39 PM

Wow....I almost thought I was reading about myself. I am 44 with 3 kids and was diagnosed with narcolepsy about 6 years ago. I did do the provigil for probably a year and it worked somewhat but nothing great. It kept me awake while driving and that was the important thing. I tried the xyrem also but I hated to be in such a deep sleep in case my baby needed me. What has really saved me was when I switched to concerta. It was like a miracle pill for me. Not only did I stay awake but I was also productive. I do have to say though that after a few years it doesn't work as well as it once did. I heard there is a new medication out there that I am willing to try. Good luck to you. I know how difficult it is. I remember how I used to try to sneak away into a closet or somewhere to sleep even if it was just for 5 minutes. I hope it will get better for you.

#7 SleepingPhoenix

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Posted 28 December 2010 - 02:17 PM

I am new to this too. I also thought I was crazy since I was having hypnogogic hallucinations and I related the cataplexy and sleep paralysis with depresion, instead of something bigger. I remember going first to my psychiatrist and asking her to hospitalize me, since I waws loosing my mind. When I told her what was going on she even got the ipod out and showed me the sympthoms of narcolepsy. It took me months to accept this, but in a way now Im relieved cause this validate years of frustration, weakness, falling asleep everywhere, and disipates what everyone was telling me that it was mental and nothing more.

With the kids, they are highly adaptable, your can teach them how to deal with you and your illness and most of all make clear that they are important to you and matter if it doesn't seem to. I know it's hard as a parent, in my case and an auntie, who used to be always for them, and now I can barely be there. If you involve them and ask them to help you in the llittle things, is enough for them to appreciate you as a parent and look up to you, like any kids would do.



#8 Military Mom

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Posted 01 February 2011 - 12:21 AM

Hi I am new as well. I just found this site a few days ago and have been reading when possible. I can't read for very long so I have a lot of information to get through. I am 50 years old and got my diagnosis about 6 weeks ago I believe. I can't figure out how this all came about. Until a year ago I NEVER slept during the day. Now I might sleep for 3 days with very short periods of wakefulness. I don't understand what I have been diagnosed with yet. I have tried a few meds but nothing has worked yet. I just started Provigil but I haven't seen any difference. Would I have seen an improvement in a day or two? Is it "normal" to be emotionally confused? I get such intense anger so easily one minute and fight back tears the next. I feel like I'm crazy. I have always been the strength of the family, the rock. I AM the one who does (did) everything for everyone and still went to the gym 4 days a week. Now I can't wait to get home in the afternoon just to be able to sit and close my burning eyes for a while. I don't think my family understands that I CAN'T do the things like I used to. I don't have the energy. I am still asked to drive the 3 hours to the airport to pick up a relative or whatever. I can't seem to get them to understand that I am afraid to drive that far. It seems they don't WANT to know. That would mean Mom isn't super human. I have gained 45lbs in 8 months. Is that something that happens to people with Narcolepsy? I can't remember things and I can't concentrate or focus. Being an old woman, it scares me to death because my mother had Dementia. I'm sorry for rambling and not making sense. It all just came tumbling out.

#9 chasing_sleep

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Posted 15 April 2011 - 02:09 PM

I think the emotional thing is common. well i know i feel the same way quite frequently. i got diagnosed a few years back I was really glad to get an answer but it didn't make certain things easier. At least I know why I struggle with school so much! When I got diagnosed they first put me on Provigil and it worked great for awhile but then i noticed it basically stopped. Then they tried ritalin which was awful, i would cry at odd things. so then it was onto adderrall xr which was great for great while. i didn't get changed to dextroamphetamine until last year. the whole while we had been trying various things for sleep. i finally got on xyrem last week. i feel like my short term memory is no good but i think that could be either years of poor sleep/not even sleep and/or sleep meds. i was 26 when i was diagnosed. for those of you that get the diagnosis later on in life my heart out to you, that you were able to do so much for so long. I do mean that with so much respect. i think you will get to a point were you realize you need to do whats best for you if that means saying i can't pick so and so from the airport up because i am too tired. i don't have children and do to my health issues probably won't so not sure what to say there. but i can tell you just educate your friends and family. people that love you and care about you will understand. one of the hardest parts about the illness is learning to lean on others especially if you are used to being indepedent.

#10 narcatfl

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Posted 26 August 2011 - 11:47 PM

Hi all, I'm new here too. I feel better knowing there are people who understand and I'm not all alone in this N/C world. I was just diagnosed here in my late 30's after a lifetime with it. It was a lot of misdiagnoses of depression.

In high school my teacher thought I was on drugs because I slept and sometimes slurred my speech. I am so slow like a turtle now, or at least I'm aware of it now thanks to Xyrem. Xyrem gets me that deep sleep so I can be awake enough to realize how tired I actually am. But I can now watch a whole movie and know what it's about!

I'm in need of some face to face understanding and going to try and start a support group here in FL! I can only stand to be on the computer so much.

#11 itsmeinin

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Posted 26 August 2013 - 12:07 PM

I totally understand that feeling of being alone or feeling crazy. That is almost as bad as the tiredness. I am 45 and had my kids when I was younger (youngest 15 now), but looking back I don't know how I did it. I was so tired. I remember just trying to do what I thought was normal so when my oldest was a baby I thought I'd go to the mall. I remember sitting down on a bench in the middle of the food court that evening, holding him in my arms and thinking, " I don't even know if I can keep holding him safely, let alone drive home". I still can't believe it took till age 44 for me to figure out my diagnosis. I'd complained of tiredness to many health care providers, but was never really taken seriously. I finally diagnosed myself, then made an appointment with a neurologist who confirmed it.



#12 Lorz

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Posted 28 August 2013 - 05:47 AM

I am new to this too. I also thought I was crazy since I was having hypnogogic hallucinations and I related the cataplexy and sleep paralysis with depresion, instead of something bigger. I remember going first to my psychiatrist and asking her to hospitalize me, since I waws loosing my mind. When I told her what was going on she even got the ipod out and showed me the sympthoms of narcolepsy. It took me months to accept this, but in a way now Im relieved cause this validate years of frustration, weakness, falling asleep everywhere, and disipates what everyone was telling me that it was mental and nothing more.

With the kids, they are highly adaptable, your can teach them how to deal with you and your illness and most of all make clear that they are important to you and matter if it doesn't seem to. I know it's hard as a parent, in my case and an auntie, who used to be always for them, and now I can barely be there. If you involve them and ask them to help you in the llittle things, is enough for them to appreciate you as a parent and look up to you, like any kids would do.

Well said.  I have already been diagnosed witn N/C yet, I am feeling that..."Am I going crazy?" feeling again.  Things are getting worse - keep refusing to throw in the towel but my only family (dad) thinks its my time to listen to my body.... I love your advice about kids; it sounds like it will help both the children and parent - the kids might feel a sense of accomplishment if they see how they can help and get reminders of how they are appreciative.  (I don't have kids.  Don't think I can but wish to.)

 

Hi I am new as well. I just found this site a few days ago and have been reading when possible. I can't read for very long so I have a lot of information to get through. I am 50 years old and got my diagnosis about 6 weeks ago I believe. I can't figure out how this all came about. Until a year ago I NEVER slept during the day. Now I might sleep for 3 days with very short periods of wakefulness. I don't understand what I have been diagnosed with yet. I have tried a few meds but nothing has worked yet. I just started Provigil but I haven't seen any difference. Would I have seen an improvement in a day or two? Is it "normal" to be emotionally confused? I get such intense anger so easily one minute and fight back tears the next. I feel like I'm crazy. I have always been the strength of the family, the rock. I AM the one who does (did) everything for everyone and still went to the gym 4 days a week. Now I can't wait to get home in the afternoon just to be able to sit and close my burning eyes for a while. I don't think my family understands that I CAN'T do the things like I used to. I don't have the energy. I am still asked to drive the 3 hours to the airport to pick up a relative or whatever. I can't seem to get them to understand that I am afraid to drive that far. It seems they don't WANT to know. That would mean Mom isn't super human. I have gained 45lbs in 8 months. Is that something that happens to people with Narcolepsy? I can't remember things and I can't concentrate or focus. Being an old woman, it scares me to death because my mother had Dementia. I'm sorry for rambling and not making sense. It all just came tumbling out.

I tried Provigil too with no luck.  Is that what is causing emotional confusion or anger?  If so, I think call your doc asap.  Provigil (correct me if I am not remembering this right) should work immediately and not take time to build up to work.  Before being treated for my N/C, I was ~35-40 lbs heavier. 

I wanted to write more but I'm in and out a sleepy haze.



#13 19leather63

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Posted 23 September 2013 - 09:54 PM

I am new to this forum. I was diagnosed in 2006 with OSA and having no insurance at the time my doctor diagnosed me at home using my Dad's old C-Pap machine. The short of it, I had a formal sleep study done in April 2013 after I got my Medicaid and found out how severe my apnea really is. I was diagnosed with severe Obstructive Sleep Apnea/Hypopnea Syndrome to the point that I stop breathing every 67 seconds and my new c-pap is now set up to 20. I thought this would fix the whole always being sleepy problem, but, it didn't so I had a daytime sleep study done in August 2013 only to find out I was going into the REM sleep cycle within 1 minute 25 seconds, I also have severe Narcolepsy. Basically I am 50 years old, have suffered from constant sleepiness and falling asleep for years and was finally diagnosed in four months time with 3 sleep disorders. People would talk to me and I wouldn't remember what they had said or if I had actually had a conversation with them or not, I seriously thought I was going insane. I saw the Pulmonologist's NP almost 2 weeks ago and she prescribed Nuvigil 150mg, the first 2 days were great, I thought I had finally gotten my life back... then on day 3 it started making my heart pound and my blood pressure drop, by day 5 I was just going in cycles, 3-4 hours for it to start working, a 2 hour alert period then back downhill again and it was taking my blood pressure with it. I am now off Nuvigil after 3 and 1/2 days of constant sleep working it back out of my system and not knowing which end was up. I also have NASH related Cirrhosis and my liver doesn't detox very well so it takes days for me to bounce back. I have probably gained 75lbs and couldn't figure out why, and the depression is unreal. They just wrote me a new prescription for Ritalin 20mg so I am really praying hard that this pill will work, I would love to have my life back again, it would be so nice being able to make it through a day with no brain fog and to be able to remember what I walked into a room to do.

#14 TeeZZZ

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Posted 11 June 2014 - 07:45 PM

For me that has been the hardest part.  I spent 14 years in counseling being treated for chronic depression.  In hindsight, I suppose I should be proud because I hung on to  my reality that SOMETHING IS NOT RIGHT ABOUT THIS for a long time before it was torn from my grasp. 

 

From 4 different psychologist/psychologists over that 14 years:

 

"You are just depressed.  You sleep to escape from the difficult realities of life." 

 

"You have a repeating cognitive pattern of self defeating prophesies.  You believe you will fail and then you do.  Your sleep issues are a convenient excuse." 

 

"You have such a deep seeded issue with relating to the world that I have assigned you the diagnosis of 'Personality Disorder Not Otherwise Specified'.  I am telling you because you may see it on your insurance EOB's.  Your personality disorder is what they would have, in the past, called, 'masochistic'.   You enjoy being in pain, being disabled, having a problem that sets you apart.  Probably because your father had Multiple Sclerosis, and subconsciously nothing is an achievement unless it is done under adversity.  If you didn't have narcolepsy, it would be something else."

 

"Perhaps insisting that there is a medical problem holding you back is in fact what is holding you back.  Do you think it Is logical to insist that you are 'too tired' or 'just can't seem to shake off a mental heaviness' after medical professional after medical professional has told you they can find nothing wrong?  How do you expect to make progress if you cannot let go of the illusions you have created to keep yourself from being at fault for the ways you have let yourself and others down?"

 

From Doctors:

 

"There is nothing physiologically wrong with you.  You need to call your psychiatrist and make an appointment.  There is no medical disorder that makes people sleep 17 hours a day.  There is nothing medical that explains what you are experiencing.  Therefor you need to see someone in the realm of PSYCHIATRY.  Unless you have some sort of brain tumor that no one has heard of..."  family practice doc

 

"You should consider yourself lucky!  Last night I got less than three hours of sleep.  DO YOU KNOW WHAT IT IS LIKE TO LAY AWAKE AT NIGHT, WITH NOTHING TO DO BUT THINK THINK THINK??"  Neurologist number one, diagnosed idiopathic hypersomnolence

 

"Idiopathic hypersomnolence.....that is the junk diagnosis for sleep hypochondriacs, right?  Oh, sorry, I don't mean you personally, but it is normally the diagnosis given that means, 'well, the patient is insisting that something is wrong, but we don't seeeee anything...'"  family doctor

 

"Your issues don't look neurological to me.  And I have been in this field for as long as you have been walking.  Just because your father has Multiple Sclerosis does not mean you need to give yourself a neurological disease.  Maybe you have fibromyalgia.  You should see a rheumatologist."  Neurologist #2

 

and one of my all time favorites...

"Being a parent requires us to make the tough choice to grow up, to be mature enough to say, "my kids need me, so I will not go take a nap today."    (for some reason that one was particularly crushing when reaching out for help.)

 

 

So what does one do but surrender to the onslaught of shame and blame and try to make oneself more complete, more committed, more determined, try something else, fight harder, and fail fail fail FAIL.  Every time confirming all of the above to be right.  If only I knew that every time also confirmed my nagging feeling that NO! I would never want to escape this! No it is not convenient!  NO I DO NOT WANT THIS!! 

 

Here is the ultimate crushing blow of narcolepsy, for me...is the very modicum of external difference between "I am creating a psychosomatic reality to excuse me from responsibility for my life, I am really a lazy, irresponsible, and psychologically damaged" and "I am sick with a debilitating disease.  I am really a strong, hardworking, resilient person who has to climb a mental mountain to wake up, to fight for clarity to think straight, to lift up each foot to take a step.  If you could see me without my chains I would shine like a million suns for the strength I have shown to be here fighting for clarity today!"  Either may look the same from the outside, to someone else.  Oh, but the difference on the INSIDE!! 

 

So, seen on the outside...

I am late.  To everything.  Very unreliable.  Back out of many things at the last minute.  Personal hygiene gets a bit rough around the edges in tough times (shower, or energy to make breakfast for kids?) I don't get excited about much.  I decline spontaneous fun plans of my family.  I have a hard time finishing projects, when I have the courage to take them on.  I sleep.  A LOT.  Completely inconsistent in my work output.   My kids have a horrible attendance record.  I forget things constantly.  Especially schedule type stuff. I seem to prefer falling asleep in a random bedroom to having holiday conversations with family.  Some days I seem normal, so the other days must just be exaggerated.  Yeah, we are all tired.  But you can't just sleep all day!!

 

But on the inside!!!

The battle I won to get the kids to school at all, albeit 8 minutes late was a bigger battle than most people win on a day with the flu to do the same.  Backing out of a commitment at the last minute is a personal triumph because I have not stopped trying, in spite of the humiliation and frustration of being stopped again and having to tell you I will not come through, I have the courage to keep trying!  I may look like a hag in bunny slippers when I drag them up to school, but my kids are well fed and healthy and know their mother loves them enough to be ugly sometimes....um, wait, no,  I meant...I can make tough judgments based on strong priorities, and I have learned that I am a person who will accept a dose of humility for those that I love, and that is a person I am proud to be.  I may not be the life of the party, but every second of clarity and energy I have I make count to build up and enhance the life and love of those around me--I am ultra-concentrated, but effective.  I have to fight more demons and face more adversity to listen to your conversation than most people do to write their college thesis, BUT I'M STILL LISTENING...even  if you can't tell because my eyes shut without my permission half way through...so that means I am actually giving more to you by listening to the half I was awake for than most people are when they hear the whole thing!! 

 

When my daughter (my oldest) was 2, I had her in this gymnastics class on Tuesdays and Thursdays.  On Wednesdays she had a little Mommy and Me preschool gig at a local church.  This particular week, I had slept through Tuesday's gymnastics. Wednesday I was up, but had no energy for a shower and my shame at being a bit unclean kept me from taking her to preschool.  So I vowed that nothing would stop me Thursday.  That morning I had several sleep attacks before 11, preventing me from showering.  15 minutes before her class was to begin, I used rage to fuel a herculean attempt to wake up and get her there!!!  We arrived 5 minutes late, but she was out there, tumbling around with her tiny friends, and she smiled this gorgeous smile!! 

 

I stood for a moment in a glow of triumph, as slowly the voices around me began to trickle into my awareness as the moment faded... and I heard, "Look. At. Her."  "Wasn't she wearing the exact same thing last week?"  "I wouldn't leave the house in that ONCE."  Slowly I looked down.  I was wearing a worn out Notre Dame tee shirt and sweatpants.  You know, work out in the yard or paint the house type clothes. 

.
............see following post



#15 TeeZZZ

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Posted 11 June 2014 - 08:17 PM

For a long eternity, you know, the kind of eternity that it takes for your lungs to fully inflate as blood pounds in your ears and the world around you begins to spin and the air loudly and slowly leaves your lungs deflated again?  For that one eternity true and complete despair threatened to steal my victory from me.  But my eyelids made a slow glide towards each other to blink that first tear of shame away, and my vision cleared for a fraction of that eternity, and my little precious girl smiled with her entire soul, looking straight into my stricken eyes, and waved, her lips silent through the observation glass forming the words, "Hi, Mommy!"

 

And that was when I won my reality back.  The two women with calculated highlights and perfect manicures and designer shoes and high fashion consciousness have, I am quite sure, crosses of their own.  Maybe crosses I would not, myself, be able to carry as well as they do, should I be given a chance to try.  But I knew for a fact, at that moment, that my cross would have defeated them, would have crushed them.  They had no power to judge my victory, even if they knew what it was.  Their reality was irrelevant, the moment they thought they could judge mine. 

 

So that is my reply, I guess.  You feel crazy?  I, too, have been labeled crazy for a good, long time.  I even accepted the label for much of that time. 

 

But I am not.  And neither are you.

 

You feel like you should be functioning at maybe an 8 or a 9 our of 10 on a scale measuring a good, complete person.  You have opportunities, you know who you rare/were and you think you should be capable of doing, well, more.  Better.  but you aren't.  You are at a 3.  Some days less.  Some days a bit more.  But it isn't because you are only trying for a 3.  Or only want a 3.  Or are only capable of a 3.  You argue, "SOMETHING IS HOLDING ME DOWN TO A 3, I AM REALLY A 9!!!"

 

But now, and for some of us for years and years, people are saying, "NO. There is nothing there.  You are just a 3.  Unless you change some unknowable thing about you, you will only ever be a 3."

 

And you are saying, "But I can feel its claws, holding me down, and it is real!"

 

But no one else sees it.  So you begin to believe that their lack of seeing should be given more weight than your definitely feeling.  You give their reality more importance than your own. 

 

And one day (or you likely wouldn't be reading this) you get a diagnosis.  Someone Else says, "Hey, I see it?  It has a good hold on you, and yes, it would be impossible to be more than a 3 with that thing, unhindered, holding you down.  I can't believe, looking at THAT, that you managed to do much more than a 1.  You must really be an incredibly strong person.  I have some things that will loosen its grip, make it lighter, give you some relief.  You are not down there because you ARE a 3.  You are a 10, fighting a -7 battle every single day."

 

And, though it will still be a battle, there is no longer an invisible but invincible glass ceiling dictating what you can be.  And since you aren't a mime, and never were, you are going to shoot out of the box that narcolepsy was keeping you in. 

 

Because nothing wasn't limiting who you really ARE, before.  And now nothing is the only thing that is!

 

I don't mean to say that living with narcolepsy is easy after diagnosis.  I wasn't talking about ease of life, of what you can do or accomplish.  I'm talking about who you are as a person.  There is a tremendous difference between living the life of a person with narcolepsy without having narcolepsy, and living the life of a person with narcolepsy because you have to fight a daily battle with narcolepsy.  Or the difference between being self limited or being limited by a serious adversary. 

 

If I fight to cross and empty field and no one is there to stop me, and by the time I cross that field I am crawling, dragging myself, gasping for air, well, that is a very different story line than  if to cross that field I must take on a battle against 3,000 armed dark knights and so I fight until my dying breath and bring hundreds of my enemy down and by the time I win my way across that field I am crawling, dragging myself, gasping for air.  Yes, both cross the field.  But the strength and the honor of the fight, and the triumph and the glory and the inspiration, and the essence that pu7ts fire in the eyes of those who watch and those who love and a burning in their hearts to do more, or be more because of that battle...that only belongs to one of the stories. 

 

Without diagnosis, we see ourselves as being battered and defeated by an empty field.  We swing and we fight but we can't land a punch.  Diagnosis is the key to unlocking that difference in how we see who we ARE!  Even with narcolepsy, nothing can bold back the beauty of WHO YOU ARE.  Can it stop you from what you want to do?  Yes, Yes it can. But never can it take from you WHO YOU REALLY ARE.

 

So, with diagnosis, you hold a new key.  But you have to turn it.  You have to redefine the battle.  That was no empty field that you just clawed your way across, that almost brought you to surrender.  You are a proven warrior!  And you have done well.

 

Don't ever give up on yourself.  There will always be one more thing to try.  It is real.  It is hard.  And you are not alone.



#16 TeeZZZ

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Posted 11 June 2014 - 08:28 PM

Dawniebaby,  I didn't realize I had two usernames!  Lol.  I read your first post, and thought, did I just write that?  Except I have 4 kids, so it is a bit easier because my oldest is 12 and she helps so much--energy to chase down the young ones when needed, etc. 

 

But the kids were just complaining that they have eaten all the food, and the grocery store is my nemesis.  I can usually get everything in the cart.  And then the energy runs out.  And I still have to check out.  And get it in the car.  And unload the car at home.  And put it away.

 

Provigil is the same for me.  Works a bit.  For a bit.  Not enough.  Nuvigil is SUBSTANTIALLY better, for me. (The newer form of Provigil).  Once a day, huge improvement in alertness.  For HOURS.  Not everyone has that much of a positive benefit.  But even with Nuvigil, I was still exhausted, even though the fog was cleared up, until they added Xyrem.  Restorative sleep.  Life changing. 

 

Call the Xyrem/SDS Pharmacy.  My insurance covers Xyrem, but we have a health savings plan.  So insurance pays nothing for it until our deductible and out of pocket are met.  I called and the Xyrem Pharmacy has a program to help pay.  My monthly bill from them went from $6,000!!! to $35.  For Nuvigil, my neurologist gave me a card that gives 1 month free, then the next 5 prescriptions filled for $50. (from $562). 

 

So do not give up!  Call your doctor.  They can give you samples, they can give you ideas.  Or ask on this site.  There are solutions. 



#17 Ferret

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Posted 11 June 2014 - 10:03 PM

TeeZZZ...
Thank you. Beautifully and descriptively written.
What an ordeal you have been through and what a fighter you are! My hat's off to you. Well done!

#18 TeeZZZ

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Posted 13 June 2014 - 08:39 AM

Ferret--thank you.  I believe that what you said of me can be said of everyone on this site.

 

My old favorite quote is very appropriate when considering the struggle of people with narcolepsy...

 

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.  Beautiful people do not just happen."  Elisabeth Kubler-Ross

 

(My NEW favorite quote is your signature: "I like to think outside the box 'cuz I'm claustrophobic."  Crackin' me up!)