14 replies to this topic

[Saraiah]

I am posting this on multiple narcolepsy forums because I am desperate for information that might save my marriage:

I was diagnosed with N 2 months ago, and believe that I've had gradually increasing symptoms of N for 19 years, till it got completely unmanageable in the past year. I find myself extremely worried about how much worse my N is going to get. In some reliable places, I see N called a progressive disease; in other places, I see statements that it's NOT a progressive disease. For me, N is pretty much just EDS plus hallucinations; I am fortunate not to have cataplexy, or frequent sleep paralysis, at least not yet. I do have microsleeps occasionally, but at least so far, I don't have huge difficulties with falling asleep in meetings or at my computer, etc. I have had to give up driving at least for the time being, though, due to microsleeps and diminished alertness accompanied by extremely dangerous automatic behavior while driving sometimes.

I'd say my biggest problem, besides having to take 1-2 2 hour naps smack in the middle of the 9-5 workday, is that my brain is not working too well. I can't reliably plan, I forget just about everything that isn't written down, I chastise my kids because I can't remember that they've already done a chore or whatever. Yesterday, I was supposed to get one thing done: take a 10 minute ride on the bus to get a blood test done. All I needed was my bus pass and the prescription for the blood test. But I wasn't able to get out the door on time until the last bus was coming, and I got the the bus stop and realized I'd forgotten the prescription.

And I just feel terrified: I can figure out how to cope with all of these memory and organizational problems, and the inability to remember common words, and the inability to remember things that I and my husband and my kids and my coworkers have said or done, for the most part, most of the time. But HOW MUCH WORSE IS THIS GOING TO GET? Am I going to be like my 94 year old grandmother with dementia 10 years from now, when I'm 50?? Or 60??

My husband last night indicated to me that he's not sure that he can cope with staying in a marriage with a person who is severely cognitively impaired. I.e., if the difficulties with logical thinking and memory get much worse, he's thinking about leaving me. So besides the anger and feelings of betrayal (what happened to for better or worse, till death do us part?), I am terrified on multiple levels. I know it's got to be extremely difficult for him, and even though he understands on an intellectual level why I sleep so much, and am so confused when I'm awake, I think it's tough for him to swallow going off to work each day to a job he doesn't like a lot of the time, to make money to support our family, while it looks like I'm lazing around in bed. (I'm on short-term disability, and am about to apply for long-term disability through my employer, since it's clear that I'm not on sufficient Xyrem and stimulants to return to work yet. And although I'm so very grateful for the ability to get 50% of my regular salary, with a kid in college our financial picture has become dire very quickly.)

So, what do I/we all have to look forward to? Is there anybody on the forum who is in their 50's or 60's or 70's and has had N symptoms since in their teens or early 20's? Or does anyone know a PWN who has had N symptoms for that long? Of course, there will be a range of symptoms among any age group. But I need to know, what's the prognosis for my ability to think and remember when I'm awake during my 50's - 70's?

If anyone can give me some strong reasons to be hopeful, I would be beyond grateful.

[Katlynran]

With a brand new diagnosis, I remember the confusion and despair that I felt, so I understand your frustration. I can tell you that it DID take me a little while to accept my N, and learn to do what works for my body. So try to keep your chin up, try to be good to yourself! Give yourself a break....

Oh I am sorry about the bus! That stinks!


I am very sad to hear what your husband said, I hope he didn't mean it seriously and was simply frustrated. I understand the kid/ college thing , as I have 3 children one in college


I hope that you get some more positive messages to help you through your difficulty, as I remember feeling like I could not go on any more, and thankfully people told me that I was not alone and that it WOULD get better.
Keep posting!


~ Kathleen

[greatbig47]

Saraiah,

2 months isn't a long time. You're still considered a newly dx'd. What almost all newly dx'd folks forget (myself included) is the diagnosis changes nothing, but gives you some ideas of how to approach your situation and condition.

Allow yourself a little consideration into how your symptoms MAY become managable, and not worried about how it can get worse. Unless you have a crystal ball, you have to admit the chances of life getting better are 50/50, right? You're basing you future on your past, which is pretty common. Fact is with an actual diagnosis, medications that address your symptoms and people that "get it" make the odds of a brighter future much more obtainable than you might be seeing at this moment.

Cognitively impaired? Wow. You get a diagnosis that's a road map to a better life, and he's thinking of leaving you? Sucks to be him!

What hubby fails to see is life very well could take a massive turn for the better, and his "I don't want to be married to a helpless and hopeless terminal sleeper" ignorance could keep him from seeing the best of you. That would be sad for a person that promised "for better or worse" to not stick around to see the better part because he's only convinced he'll see worse. Bummer for him.

Many people at the crossroad you are at travel comfortably down one of 2 paths...

1) Life sucks, I am now cursed with a scarlet "N" and now I must sleep forever! zzzzzzzzzzzzzzzz

or

2) Okay, Now I know what the problem is, I can do my best to over-come it

If you've seen it called progressive AND not progressive, that means that SOMEONE along the way is wrong. Consider it might not be worth the time to debate that in your head. If you rally for the "It gets worse as I get older" side of the argument, you could be defeating yourself needlessly. Consider what might happen if (for your own sake) often thought of your Narcolepsy as something that could/would get better over time? Consider this would be a meditation better for your heart and soul than feeding the unknown of it MIGHT be "progressive".

And here's the kicker...

Things ARE most likely to get better. The newest meds help. It takes a small amount of time, but I hope you can imagine a day where you CAN think clearer, and the microsleeps drastically fade out of life's schedule. I've seen it happen.WHile it feels like life could abruptly end, I hope you can believe me that the truth is life may be just about to begin. It takes time to find trustable medications and good people to wrap around yourself, but it will be one of the greatest parts of your life.

Listen to your doctor. Surround yourself with people that know and understand Narcolepsy. Allow yourself the possiblity you could end up just fine (if not better) at 50 or 60. Enjoy the fact that now you are diagnosed, you could possibly experience your 50's and 60's being better than what you could possibly predict at this moment in time!

Instead of "How much worse can this get?"....allow yourself the strength to face those symptoms head on. Now that you're diagnosed and (hopefully) on a course to help yourself, many of those symptoms may be a thing of the past.

Blessings and Prayers sent your way!!!

-Stu

I am posting this on multiple narcolepsy forums because I am desperate for information that might save my marriage:

I was diagnosed with N 2 months ago, and believe that I've had gradually increasing symptoms of N for 19 years, till it got completely unmanageable in the past year. I find myself extremely worried about how much worse my N is going to get. In some reliable places, I see N called a progressive disease; in other places, I see statements that it's NOT a progressive disease. For me, N is pretty much just EDS plus hallucinations; I am fortunate not to have cataplexy, or frequent sleep paralysis, at least not yet. I do have microsleeps occasionally, but at least so far, I don't have huge difficulties with falling asleep in meetings or at my computer, etc. I have had to give up driving at least for the time being, though, due to microsleeps and diminished alertness accompanied by extremely dangerous automatic behavior while driving sometimes.

I'd say my biggest problem, besides having to take 1-2 2 hour naps smack in the middle of the 9-5 workday, is that my brain is not working too well. I can't reliably plan, I forget just about everything that isn't written down, I chastise my kids because I can't remember that they've already done a chore or whatever. Yesterday, I was supposed to get one thing done: take a 10 minute ride on the bus to get a blood test done. All I needed was my bus pass and the prescription for the blood test. But I wasn't able to get out the door on time until the last bus was coming, and I got the the bus stop and realized I'd forgotten the prescription.

And I just feel terrified: I can figure out how to cope with all of these memory and organizational problems, and the inability to remember common words, and the inability to remember things that I and my husband and my kids and my coworkers have said or done, for the most part, most of the time. But HOW MUCH WORSE IS THIS GOING TO GET? Am I going to be like my 94 year old grandmother with dementia 10 years from now, when I'm 50?? Or 60??

My husband last night indicated to me that he's not sure that he can cope with staying in a marriage with a person who is severely cognitively impaired. I.e., if the difficulties with logical thinking and memory get much worse, he's thinking about leaving me. So besides the anger and feelings of betrayal (what happened to for better or worse, till death do us part?), I am terrified on multiple levels. I know it's got to be extremely difficult for him, and even though he understands on an intellectual level why I sleep so much, and am so confused when I'm awake, I think it's tough for him to swallow going off to work each day to a job he doesn't like a lot of the time, to make money to support our family, while it looks like I'm lazing around in bed. (I'm on short-term disability, and am about to apply for long-term disability through my employer, since it's clear that I'm not on sufficient Xyrem and stimulants to return to work yet. And although I'm so very grateful for the ability to get 50% of my regular salary, with a kid in college our financial picture has become dire very quickly.)

So, what do I/we all have to look forward to? Is there anybody on the forum who is in their 50's or 60's or 70's and has had N symptoms since in their teens or early 20's? Or does anyone know a PWN who has had N symptoms for that long? Of course, there will be a range of symptoms among any age group. But I need to know, what's the prognosis for my ability to think and remember when I'm awake during my 50's - 70's?

If anyone can give me some strong reasons to be hopeful, I would be beyond grateful.

[Saraiah]

Ok, Stu, I pick #2. Thanks so much. I would be brokenhearted if my husband left, but I like the idea that it would be his loss... And I SUPER like the idea that this is all going to get better. I've been slowly getting discouraged, worrying that I'll never be better enough to go back to work, and then my husband hit me that that megabomb last night, and I really started catastrophizing. Ok, chin up!

[greatbig47]

Counter mega bomb...

The right meds and supportive folks around you are actually more likely to make you more functional than you've been in YEARS!

It doesn't happen over night, and if you had your husband on your side it would most likely happen sooner. At this point, I can imagine it's like a puzzle to figure out what works and what doesn't. If you stop looking for what works, the odds are you might not find it. With the DX, you're closer to solving the puzzle every day!

So many NEVER get the DX, and the results often end in tragedy. You got the DX...you're on your way to winning.

[Katlynran]

Well said...
I agree that a positive attitude helps more than a negative one. If we using whatever energy we to have to worry about "what if" we may not have any energy left to enjoy something. That is something that I learned after time. Glad to hear that your chin is up!
~K

[Saraiah]

Stu and K,

THANK YOU so much for your kind help. I confronted my husband today with how painful and frightening it is for me to hear that he's not willing to stick around when the going gets tough. I laid out for him how deeply I love him, and how deeply I would grieve if he left. And then I told him that my PWN friends say that I am on the road to getting BETTER, not worse, and (I took a leap here) that there was no reason at all to think that the N symptoms would be getting worse over time. Because (I didn't add that "Stu says!") now I know what is wrong and I can start to fix it! And when he didn't immediately hang his head, I added that his grandfather, who cherished his grandmother even after she became very disabled at the end of her life, would be ashamed of his behavior. And that I was pretty ashamed of his behavior (although not terribly surprised - we've been here before). And that I didn't want a partner staying with me out of obligation - although if he took off, he might be missing out on my and our best years ever.

You guys gave me so much hope, and so much conviction. I am practically ready to frame your posts (but not really - don't want to frighten the children). And my husband finally did see his real uncertainty about staying with me as not who he wants to be. So, we're going to go to marital therapy, and for the very first time ever, he's thinking about going to individual therapy - now, that's a good idea! He's a very, very good man, and I love him so very much. I know that this d**n disease is very hard on him, as well. I'd lost perspective to such a degree that I was wondering if his wish to escape was a reasonable one. Thanks so much for turning me around!

Saraiah

[Tara]

That sounds very good! I wish you all the best. This site has been an eye opener for me and its my first day! I hope I will post more as I get used to this - take care....

[merrymom1013]

I'm glad you are listening to this great advice. For my daughter, it took quite awhile to get things to a good point- she was also dealing with some other illnesses and puberty, and her cataplexy was severe. I was constantly asking her doctor if he had exhausted his bag of tricks. The answer was always no, so we kept some hope. There was always a higher dose or different combination of drugs we hadn't tried (still is). We pursued everything else that might help- dealing with the other health issues, counseling. and prayer.
It does get better! When my daughter was at her worst, she couldn't get through a chapter of a book, come up with the ideas to write a paragraph or remember her math facts. Heck, she couldn't walk across the room without falling sometimes. Now? Her SATs are in the top 5%, her term paper (completed junior year of high school) is on a college professors website as the example of a model paper, she's finding calculus to be fun and she has her driver's permit. No it's not perfect, and her life isn't quite the same as her healthy friends, but that's how much better it can be.
Two months is not very long - it may take some trial & error to find your best treatment plan. It also takes some time to emotionally come to terms with the diagnosis. Any big diagnosis rocks a marriage & the whole family as well. It takes some time to get to your new normal whether it's narcolepsy, diabetes or cancer. Narcolepsy isn't fatal, and many manage quite well. New treatments have become available in recent years. And if your symptoms get worse in 10 or 20 years, there may well be even newer and better treatments. None of us have any guarantees about the future. Hang in there.

[malachi777]

Wow! Each and every one of you having given such great advice to Saraiah. You are blessed with words and wisdom.

Saraiah, I don't need to say anything after their beautiful words, other than good luck. I will pray for peace in your life through all of your tribulations. Think "Peace" for a moment each day and accept your condition. You do not have to like it, just accept it for your own good.

[SureSleepsalot]

1st. Ditch that loser; you can do alot better... and thanks for the story as it was a good reminder as to why I'm never getting married!

2nd. I'm assuming you're in America, but whatever. you have internet access okay? ...I'm talking about, when ever you want to complain, or moan and groan about this that and the 3rd... Do it to some kid in south africa, that drinks from muddy creeks and will probally die of starvation by the time he's 10.

Or like, you know what I'm saying? I'm just saying always remember, yeah, Sh**s bad, but it could be ALOT WORSE...

And I'm not saying that like, condeming you for posting here at all... thats GOOD! I was just pointing out that sometimes we need to think about who we are complaining too... (ya feel me?) and by changing your audience (in your mind) you can get a new perspective on what it is you're saying...
like "What would a starving somalian think about what I just said ?"

Nextly, Relax, the New WOrld Order will be here soon, and take us all away, so, all this stuff you're "Collecting" is just Junk. As long as you have a mattress and a pillow. You should be fine.

Keep me posted on how the disability thing works out, as I have just recently applied myself...

What else? oh yeah, I want to say that the whole "Taking forever to leave the house" thing is just part of the human condition-
but I have talked to Alot of Narcs that will testify... To you know, yeah... Run around the house scrambled for 15 minutes before you leave, and STILL FORGET something that is CRUCIAL. example: Go to class, for get my bookbag. Go to the pool, forgot my swimsuit...

Ya know?! Like?! cmon!? Right?!!

Go play tennis, forget my racket. Make a Grocery list... leave it on the counter. I've walked out of stores, forgot my wallet on the counter, Gas Caps! how many freegan gas caps! what about forgeting what it was you were even talking about... that happens to me alot too... and it never comes back, like, I don't remember what it was a little while later, its just like, I lose a train of thought, and Poof! its gone!

Cheers to the Sleepy!

-Adam

[hathor]

ive got nothing to say its all been said!!! just keep positive and i hope you both work it out. Now you have your diagnoses you have name to your problem and now its up to you both to figure out what works, and it sounds like you are both trying so stick with it and good luck.

[ShannonIsSleepy]

Saraiah, I am glad you are listening to the good advise these ppl have given you. I am 43, Dx'd about 10 years ago. It is overwhelming at first, but I was thankful that at least now I know what I have wrong with me, it has a name, and meds to help with it. I have options for improvement. That is much better than thinking your going crazy and no one understands it!! I have read and heard that as you get older N can get some better. They are not sure if it is the better meds that have come along through the years, or the fact that the everyday stress of life usually eases as you get older. But whatever, I look forward to it! Also, you are going through a lot of stress, not only with being off work, your dx of N, your husband's insecurrities, but you also just took a child off to college! Stress is the one thing that makes my N much worse. So, I am sure with time, it will get better!! Good luck to you and I am soooo proud you and your hubby are going to counciling. He really does love you if he wants to try. Sincerely, Shannon

[sleepless sleeper]

SureSleepsALot:
"2nd. I'm assuming you're in America, but whatever. you have internet access okay? ...I'm talking about, when ever you want to complain, or moan and groan about this that and the 3rd... Do it to some kid in south africa, that drinks from muddy creeks and will probally die of starvation by the time he's 10."
"What would a starving somalian think about what I just said ?"
"Keep me posted on how the disability thing works out, as I have just recently applied myself... "

I am wandering how a starving somalian would feel about a young man that is fit and robust enough to go swimming, play tennis, shop in a grocery store full of food getting disability.


"Or like, you know what I'm saying? I'm just saying always remember, yeah, Sh**s bad, but it could be ALOT WORSE...- ...the New WOrld Order will be here soon, and take us all away, so, all this stuff you're "Collecting" is just Junk."
"And I'm not saying that like, condeming you for posting here at all... thats GOOD! I was just pointing out that sometimes we need to think about who we are complaining too... (ya feel me?)"

H no. I don't even understand what you're saying.
--------------------------------------------------------------------------------------------

Now that I have thoroughly ticked you off, I hope you understand that I wanted to provoke a negative feeling within you similar to (but not the same as) the negative feelings that you provoked in a few others on here. Except theirs were more of feeling hurt, some shame for feeling this way, and others of outrage.

I do realize that your intentions are to help. You are correct that we do need to look at the positive side of life. There are days, however, that not all of us are capable of doing that. Those of us that hit rock bottom or are just having a bad day may need to say to a friend that they need guidance or support or just a hug. It is okay to do that on this forum.

Again, I don't think that you are purposely being mean, and I know that your intentions are good. I apologize if I made you angry, but I didn't know how else to show you that your words hurt. Telling Saraiah to complain to a kid in South Africa was harsh. Narcolepsy can be a debilitating disease, and anyone is welcome to say that they need advice or even that they are having a hard time. None of us should ever do this to another pwn. We get enough of that from everyone else. Let's stick together and not talk like that to one another. We are our own support.

[Mirianda]

It is really freaky for me to read about your situation (symptoms: confusion so little memory and my Fiancé isn't sure he wants to cope with me) But I don't have Kids I'm only 20... I know you are probably gonna say "well why don't you leave him?" He is my first love and I do love him a WHOLE LOTS! Problem is that I think too often I believe it's my fault everything is happening the way it does and I should probably seek more medical help(my next appointment is in december) (I think my situation regarding my age isn't entirely normal) I'm a stubborn little girl never asked help from no one but to work in an office is so hard and I can't do a lot of jobs that you are standing because I have feet knees and ankle problems I'm still taking my accounting (trying real hard no to get discouraged and quit because I finish so late!)

Oh and as for college well I already live in an appartment and can't really go back to school full time I don't have to money to. My Fiancé hate my double sided mood... The oh so sweet girlfriend smiling and leaps on the sidewalk runs up the stairs to kiss him when gets home from work but there is also the no patience at all crying all the time with a lot of emotional distress girl... ah... I'll get through this I just wonder how long does it have to be this way