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Newly Diagnosed Narcoleptic... I Have No Idea What I'm Doing!!


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#1 sweetest_shone

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Posted 09 February 2013 - 12:28 AM

I am a 27 y/o mom of a toddler. I also work fill time. Newly diagnosed with N. I do not have the Cataplexy but all the other "normal" signs/symptoms. When Diagnosed i figured my neurologist would give me advice, tips, guidance or whatever to help improve my quality of life. NOPE! Just a prescription and a diagnosis!! Don't Get me wrong! After Several years of having being lazy, diagnosed as depressed, ppl telling me i'm "a new mommy, You'll get use to it" and my GYN telling me I need to do a 180 with my lifestyle and eat better and exercise... I'm glad to have a meaningful diagnosis! I just don't know how to deal with all this!!! I don't even know where to start, it's so overwhelming!
I'm having a hard time accepting this diagnosis since no one seems to understand ANYTHING! Especially my extreme level of tiredness. I feel like people (mainly family) are just expecting too much from me. I feel more anxiety more often.
All in all... Can anyone give a newbie on adderall 20mg any tricks, tips, pointers? I need someone to show me the ropes. (And I saw someone on here say they take naps every 4 hours.... Nothing like that is a reality for a mother of a young child that works full time)
Thanks a bunch!!

#2 misssleepy

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Posted 09 February 2013 - 08:21 PM

 In my opoin, adderall is the best and the worst med. It is great at keepin me awake but, the crash feeling when it begins to wear is the worst. I decided long ago it was not the med for me because the wearing off moments were so hard on me. I am 24 and have been coping with N/C sense my diganosis 12years ago. My advice would be a regular sleep schedule, naps are great, (I have not mastered fittinng them in my life very often)  coconut has been proven help with wakefulness as well as caratine. I drink carrit sobees ans coconut water on bad days along with energy vitiman water. I drink green tea to try and help my body cope with all the meds, I am exposing it to. It is a struggle and I wish you the best:)



#3 munky

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Posted 09 February 2013 - 08:28 PM

I'm supposed to take naps every 4 hours at work, though the timing doesn't quite work out that way most times. But that's part of my recommended treatment and works for me because I don't have children. I don't think there's any one of us who can say our treatment plan is the same as anyone else's, and unfortunately that's just part of being narcoleptic.

 

For my part, at work, I take regular short breaks and walk around a little bit. That helps to hold off the sleep attacks between naps. And when I'm sitting still for whatever reason, I try to have something I can do to keep my mind occupied--researching random things on the 'net on weeknights at work, doing homework on weekends at work; making jewelry, doing homework, or playing with the dogs at home. It isn't perfect, by any means, but it helps. I haven't given up caffeine yet, either, though it's been suggested by both my primary care doctor and my neurologist.

 

And I'm firm on my limits. I know what my limits are, and I don't push them for anyone. I'm lucky enough that my family and most of my friends have been very understanding, but for those who aren't, I just cut them off. "No, I can't do that. <insert reason here>." Reasons I've given have been that I need to sleep, or that I just can't think straight right now or even, sometimes, I just can't. They may be disappointed, but that's their issue to deal with, not yours. They'll have to learn to deal with it ... or not, and just have to live with the disappointment.

 

As for the medication, I can't offer you any advice about that, since I'm on a different medication, but there will be plenty of people here who can.

 

The only other advice I can offer is, any time you come up with specific questions, do some research. Search the forums here--someone else may have asked the same or a very similar question and gotten some advice that might help you as well. If you dont' find any posts on your search, or don't see an answer that works for you, start a new post. There are lots of people here who may have faced similar issues and can give you advice. Buy a small, pocket/purse-sized notebook and write the question down. At your next appointment with the doctor, pull out your notebook and ask the questions you've written down. Your doctor can't answer questions you don't ask--s/he doesn't know what kind of questions you even have, until you voice them. Most good doctors, once asked, will be able to give you some kind of answer--even if s/he doesn't know the answer, s/he might be able to point you to a good resource.



#4 sweetest_shone

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Posted 09 February 2013 - 08:37 PM


In my opoin, adderall is the best and the worst med. It is great at keepin me awake but, the crash feeling when it begins to wear is the worst. I decided long ago it was not the med for me because the wearing off moments were so hard on me. I am 24 and have been coping with N/C sense my diganosis 12years ago. My advice would be a regular sleep schedule, naps are great, (I have not mastered fittinng them in my life very often) coconut has been proven help with wakefulness as well as caratine. I drink carrit sobees ans coconut water on bad days along with energy vitiman water. I drink green tea to try and help my body cope with all the meds, I am exposing it to. It is a struggle and I wish you the best:)



#5 sweetest_shone

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Posted 09 February 2013 - 08:44 PM

I have tried Ritalin plain and the XR and has the huge crash you are talking about. It was horrible. On day 4 of the adderall and doing ok, not perfect so far. I like that I can half them if its not a bad day. I am going to try the coconut water! Thanks you so much for the input and well wishes!

#6 sweetest_shone

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Posted 09 February 2013 - 08:46 PM

I'm supposed to take naps every 4 hours at work, though the timing doesn't quite work out that way most times. But that's part of my recommended treatment and works for me because I don't have children. I don't think there's any one of us who can say our treatment plan is the same as anyone else's, and unfortunately that's just part of being narcoleptic.

For my part, at work, I take regular short breaks and walk around a little bit. That helps to hold off the sleep attacks between naps. And when I'm sitting still for whatever reason, I try to have something I can do to keep my mind occupied--researching random things on the 'net on weeknights at work, doing homework on weekends at work; making jewelry, doing homework, or playing with the dogs at home. It isn't perfect, by any means, but it helps. I haven't given up caffeine yet, either, though it's been suggested by both my primary care doctor and my neurologist.

And I'm firm on my limits. I know what my limits are, and I don't push them for anyone. I'm lucky enough that my family and most of my friends have been very understanding, but for those who aren't, I just cut them off. "No, I can't do that. <insert reason here>." Reasons I've given have been that I need to sleep, or that I just can't think straight right now or even, sometimes, I just can't. They may be disappointed, but that's their issue to deal with, not yours. They'll have to learn to deal with it ... or not, and just have to live with the disappointment.

As for the medication, I can't offer you any advice about that, since I'm on a different medication, but there will be plenty of people here who can.

The only other advice I can offer is, any time you come up with specific questions, do some research. Search the forums here--someone else may have asked the same or a very similar question and gotten some advice that might help you as well. If you dont' find any posts on your search, or don't see an answer that works for you, start a new post. There are lots of people here who may have faced similar issues and can give you advice. Buy a small, pocket/purse-sized notebook and write the question down. At your next appointment with the doctor, pull out your notebook and ask the questions you've written down. Your doctor can't answer questions you don't ask--s/he doesn't know what kind of questions you even have, until you voice them. Most good doctors, once asked, will be able to give you some kind of answer--even if s/he doesn't know the answer, s/he might be able to point you to a good resource.



#7 sweetest_shone

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Posted 09 February 2013 - 08:52 PM


I'm supposed to take naps every 4 hours at work, though the timing doesn't quite work out that way most times. But that's part of my recommended treatment and works for me because I don't have children. I don't think there's any one of us who can say our treatment plan is the same as anyone else's, and unfortunately that's just part of being narcoleptic.

For my part, at work, I take regular short breaks and walk around a little bit. That helps to hold off the sleep attacks between naps. And when I'm sitting still for whatever reason, I try to have something I can do to keep my mind occupied--researching random things on the 'net on weeknights at work, doing homework on weekends at work; making jewelry, doing homework, or playing with the dogs at home. It isn't perfect, by any means, but it helps. I haven't given up caffeine yet, either, though it's been suggested by both my primary care doctor and my neurologist.

And I'm firm on my limits. I know what my limits are, and I don't push them for anyone. I'm lucky enough that my family and most of my friends have been very understanding, but for those who aren't, I just cut them off. "No, I can't do that. <insert reason here>." Reasons I've given have been that I need to sleep, or that I just can't think straight right now or even, sometimes, I just can't. They may be disappointed, but that's their issue to deal with, not yours. They'll have to learn to deal with it ... or not, and just have to live with the disappointment.

As for the medication, I can't offer you any advice about that, since I'm on a different medication, but there will be plenty of people here who can.

The only other advice I can offer is, any time you come up with specific questions, do some research. Search the forums here--someone else may have asked the same or a very similar question and gotten some advice that might help you as well. If you dont' find any posts on your search, or don't see an answer that works for you, start a new post. There are lots of people here who may have faced similar issues and can give you advice. Buy a small, pocket/purse-sized notebook and write the question down. At your next appointment with the doctor, pull out your notebook and ask the questions you've written down. Your doctor can't answer questions you don't ask--s/he doesn't know what kind of questions you even have, until you voice them. Most good doctors, once asked, will be able to give you some kind of answer--even if s/he doesn't know the answer, s/he might be able to point you to a good resource.



#8 sweetest_shone

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Posted 09 February 2013 - 08:57 PM

That was part of my frustration w/ being newly diagnosed but being given no treatment plan or advise. You are absolutely right about asking questions. And i will do the Notebook thing for sure!! I'm not sure if I know what questions to ask. Although, I learn more and more every day from this site and I am SO grateful! For example... Cataplexy... I thought I had no signs or symptoms of..As it turns out, from a previous post on here Im wrong.... i have definitely had the can't complete normal sentences and at a loss for words during regular conversation. I didn't even know to mention this to my Dr! That's one reason why I say and I mean this "I have no idea what I'm doing"! Lol.

#9 sweetest_shone

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Posted 09 February 2013 - 09:15 PM

Also, as for the family thing. I keep telling myself I'm just going to listen to my body to to heck w/ everything/ everyone else (except for my little one) but I feel guilty sometimes when I do. For instance, a dog in the family was going to be put down b/c no one wanted her. A 50 lb lab mix, my hubby, the animal lover, was torn to pieces. I agreed to take her in while sobbing b/c I know the extra energy/stress this is going to take on my mind/body. This is the part where no one understands and the part where I give in. I have been dealing with the EDS for quite some time. I just thought having a diagnosis family would be more understanding/sympathetic. Maybe I'm asking too much from them. I'm really not sure.

#10 Hades101

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Posted 10 February 2013 - 12:03 PM

I am not sure if it is right or wrong for you, but my doc put me on a medication called Nuvigil for my Narcolepsy. I have two children ages 5 and 3 1/2 so I understand the not being able to nap during the day as my doc has also suggested. The Nuvigil was pretty expensive and I had to go through some stuff to get it approved through my insurance, but the doc was also able to give me some kind of discount card from the Nuvigil company that works to reduce the co-pay so it can be more affordable. Once again though I am not sure if this medication would be right for you, perhaps your doc chose to prescribe ritalin for you because he felt it would benefit you in your situation better, but I thought I would mention it.

I definitely feel more "alert" during the day though, so I can tell its working. Sometimes it's a little bit of a rollercoaster effect on alert/tired, but then again the tired spells are probably when I should be taking those "prescribed naps" and I definitely notice a LOT more alert times now then I used to have....no joke I would sleep forever if you let me. I once had two days off of work and slept from 8pm when I got off of work until 3pm the day I had to go back to work (and had to be there at 4pm). I only got up to go to the bathroom and literally like a couple time to eat some toast or something quick and small so I could get back to bed. Needless to say I was still "tired" when I had to get up and obviously my family was not thrilled with me :/

 I still have a bit of trouble having "restful" sleep at night. Even though I sleep enough hours I won't wake up feeling refreshed. When I mentioned this fact to my doc he said that sometimes some patients also need a second med called xyrem to help them have that "restful" sleep. I haven't had the opportunity to start taking the xyrem yet because of the channels one has to go through to get it provided to you, but I have high hopes that it will work. And I feel for you and your family not understanding you....I too have lived with that and still do. I try not to let it get to me and if someone wants to think poorly of me, family or not, then they can. I am trying to improve/cure my problem and I don't need to worry about their opinions of me. Besides, even if I do get it under control they still may not think highly of me....sometimes family just doesn't get along. Thankfully, my husband understands....I just hope my kids understand when they are older why I never could do fun things with them because "Mommy is too tired and needs to sleep". Hang in there! As long as your breathing.....your doing good!



#11 sweetest_shone

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Posted 10 February 2013 - 12:16 PM

I am not sure if it is right or wrong for you, but my doc put me on a medication called Nuvigil for my Narcolepsy. I have two children ages 5 and 3 1/2 so I understand the not being able to nap during the day as my doc has also suggested. The Nuvigil was pretty expensive and I had to go through some stuff to get it approved through my insurance, but the doc was also able to give me some kind of discount card from the Nuvigil company that works to reduce the co-pay so it can be more affordable. Once again though I am not sure if this medication would be right for you, perhaps your doc chose to prescribe ritalin for you because he felt it would benefit you in your situation better, but I thought I would mention it.
I definitely feel more "alert" during the day though, so I can tell its working. Sometimes it's a little bit of a rollercoaster effect on alert/tired, but then again the tired spells are probably when I should be taking those "prescribed naps" and I definitely notice a LOT more alert times now then I used to have....no joke I would sleep forever if you let me. I once had two days off of work and slept from 8pm when I got off of work until 3pm the day I had to go back to work (and had to be there at 4pm). I only got up to go to the bathroom and literally like a couple time to eat some toast or something quick and small so I could get back to bed. Needless to say I was still "tired" when I had to get up and obviously my family was not thrilled with me :/
I still have a bit of trouble having "restful" sleep at night. Even though I sleep enough hours I won't wake up feeling refreshed. When I mentioned this fact to my doc he said that sometimes some patients also need a second med called xyrem to help them have that "restful" sleep. I haven't had the opportunity to start taking the xyrem yet because of the channels one has to go through to get it provided to you, but I have high hopes that it will work. And I feel for you and your family not understanding you....I too have lived with that and still do. I try not to let it get to me and if someone wants to think poorly of me, family or not, then they can. I am trying to improve/cure my problem and I don't need to worry about their opinions of me. Besides, even if I do get it under control they still may not think highly of me....sometimes family just doesn't get along. Thankfully, my husband understands....I just hope my kids understand when they are older why I never could do fun things with them because "Mommy is too tired and needs to sleep". Hang in there! As long as your breathing.....your doing good!



#12 sweetest_shone

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Posted 10 February 2013 - 12:26 PM

I love the support! Seriously. It's like nothing I've ever had before!!
And my 2 y/o is a little too young to understand if I don't go do this or that but that is a fear of mine-- letting her down b/c I'm just too tired.
I'm on adderall now.. I think day 4. Going good so far. If I stay still for too long though... It's probably over! Lol. The Nuvigil was actually the 1st choice from my dr. It was my personally last resort. Reason #1 it makes your birth control less affective. So I told him to keep it far away from me. And #2 the price. After being truly 100% diagnosed I told him that I am opened to changing my b.c to something like IUD that wouldn't be affected by the meds since this is now an official diagnosis that is a lifelong disease with no cure. Yay me!!

#13 sweetest_shone

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Posted 10 February 2013 - 12:26 PM

I love the support! Seriously. It's like nothing I've ever had before!!
And my 2 y/o is a little too young to understand if I don't go do this or that but that is a fear of mine-- letting her down b/c I'm just too tired.
I'm on adderall now.. I think day 4. Going good so far. If I stay still for too long though... It's probably over! Lol. The Nuvigil was actually the 1st choice from my dr. It was my personally last resort. Reason #1 it makes your birth control less affective. So I told him to keep it far away from me. And #2 the price. After being truly 100% diagnosed I told him that I am opened to changing my b.c to something like IUD that wouldn't be affected by the meds since this is now an official diagnosis that is a lifelong disease with no cure. Yay me!!



#14 sweetest_shone

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Posted 10 February 2013 - 12:30 PM


Also, as for the family thing. I keep telling myself I'm just going to listen to my body to to heck w/ everything/ everyone else (except for my little one) but I feel guilty sometimes when I do. For instance, a dog in the family was going to be put down b/c no one wanted her. A 50 lb lab mix, my hubby, the animal lover, was torn to pieces. I agreed to take her in while sobbing b/c I know the extra energy/stress this is going to take on my mind/body. This is the part where no one understands and the part where I give in. I have been dealing with the EDS for quite some time. I just thought having a diagnosis family would be more understanding/sympathetic. Maybe I'm asking too much from them. I'm really not sure.



#15 Hades101

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Posted 10 February 2013 - 12:31 PM

I love the support! Seriously. It's like nothing I've ever had before!!
And my 2 y/o is a little too young to understand if I don't go do this or that but that is a fear of mine-- letting her down b/c I'm just too tired.
I'm on adderall now.. I think day 4. Going good so far. If I stay still for too long though... It's probably over! Lol. The Nuvigil was actually the 1st choice from my dr. It was my personally last resort. Reason #1 it makes your birth control less affective. So I told him to keep it far away from me. And #2 the price. After being truly 100% diagnosed I told him that I am opened to changing my b.c to something like IUD that wouldn't be affected by the meds since this is now an official diagnosis that is a lifelong disease with no cure. Yay me!!

Yeah I didn't have to worry about the birth control thing because I have the Mirena which is practically just a plastic umbrella to block hahaha. And if you do end up changing to the Nuvigil make sure to ask if the doctor's office has those Nuvigil discount cards... my co-pay is 60$, but with the discount card I got my first prescription filled for free, and supposedly the subsequent refills should only cost me 5-10$. I haven't refilled it yet, but I will let you know if the card holds true to its word ;)



#16 sweetest_shone

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Posted 10 February 2013 - 12:42 PM

Oh wow!! Sounds great!! Definitely let me know, just in case.
Thanks a lot!!

#17 Tre

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Posted 10 February 2013 - 12:58 PM

I cannot take stimulants due to a heart condition but I took Nuvigil and Progivil.  I liked the provigil better but please watch out for sores or rashes.  I got a sore throat and my tongue was discolored.  Soon after it started peeling and flaking.  I also got rashes in my armpits :(  Doctors suspected Steven-Johnson syndrome but I was just pissed I can't either med.

http://en.wikipedia....ohnson_syndrome

This type of reaction can happen even on atibiotics...It's very rare but then I guess that's my luck.



#18 Hades101

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Posted 10 February 2013 - 01:12 PM

It is interesting that you found a difference between the two. I had never even heard of Provigil until reading some posts recently and when I looked up information about Nuvigil and Provigil it seemed many of the articles were implying it was essentially the same medication with a different name so the company that owns the drugs would not lose their market niche when their original (Provigil) lost its patent and generics became available. I don't know though...as long as the Nuvigil works for me I am happy with it, and of course everyone is going to be different in what their bodies react to, so its good to find what works for you. I am sorry that you can't use any of those meds to help you, I understand how it sucks to be sleepy all the time. Has your doctor suggested other meds like xyrem, the one that supposedly helps you get more "quality" sleep at night? I am pretty sure that is not a stimulant and maybe it could help a bit? Not sure, but I hope you can find something to help you soon!



#19 Tre

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Posted 10 February 2013 - 01:26 PM

Provigil and Nuvigil are made by the same company.  They are extremely similar.  Basically in as best none chemistry terms as I can do Provigil is used up (metabolised) more quickly in the body and is considered chemically less efficiant.  Nuvigil is almost like a long acting drug because it takes longer to metabolize....It is not coated like other meds to be long acting .  It is just processed alittle differently by the body.

Due to this Nuvigil is usually taken in the morning and mid day.  otherwise it wouldn't last most people the whole day.  Nuvigil is usually once daily.

Thing is if you want to take a nap or be out late.  The provigil allows you to decide if you want to and when to take the second dose.

I will be talking to the doc about starting xyrem on wed. myself.  We had some setbacks after we thought a second docs opinion would help.



#20 exanimo

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Posted 01 March 2013 - 09:52 AM

I wasn't able to get through all of the previous posts, so hopefully I don't repeat anything anyone has said. 

 

First of all, I am glad you are here! This forum isn't always busy, but we are all here to support each other. 

 

My first point of advice is to remember that there are many medications that can be used to treat the symptoms of narcolepsy. They are not a cure and they will never completely fix things, they just help make it a little easier to deal with the symptoms. There is no medication that is going to be right for everyone. Some people seem to do well with stimulants (such as adderal or ritalin) while others do better with provigil or nuvigil. Still, others seem to benefit more from medications that help regulate the sleep cycle (like xyrem). Sometimes, it takes  a combination. But the most important thing to remember, is that you have find what is right for you. Ideally, you should take notes about how the medication is helping and any side affects you are experiencing. But, as we all know, this isn't always realistic as we have so many things to do in a day all ready. Also, one thing to remember about medications for treating N symptoms, is that many of them will slowly become less effective. This may not be true for everyone, but I have seen many posts about medications becoming ineffective after a period of time. I have experienced this myself, as I've all ready increased my Nuvigil to the max dose and am now finding that I am sleeping more often and napping more throughout the day, again. When just months ago, I was only taking a nap during the day maybe twice a week. So just watch out for this. Some doctors will recommend that you not take the medication on days you are less likely to need it. This might be weekends, or it might be days where you're not leaving the house. But the point is to keep your body from building up a tolerance. This is something that you should not do yourself, without talking to your doctor first as it can have it's own problems. 

 

The second point of advice, is more of a question. How much support do you receive from family? You mentioned a husband, how supportive is he? How close are you to your family? Some families are very close while others aren't. It isn't realistic to expect support from a family who has never been very close emotionally. This isn't to say that you shouldn't try, but just something to consider so that you don't have unrealistic expectations. I'm assuming, since you are only newly diagnosed, and are still trying to figure things out with N, that your family probably doesn't have much clue about it, either. My only suggestion here, is that you try your best to explain it to them, and give them resources. The NN is not just for patients, but family as well. There are other resources too, like books and pamphlets. I think that the most effective way of doing this, though, is to approach family members as individuals. ie, your mother is a book person, so maybe give her a book about it. Or perhaps your sibling is an emotional person, so try to express your emotions regarding N. Not just how EDS makes you feel, but how scary it is to think you'll have it for the rest of your life. How frustrating it was to not know why you were so much more tired than everyone else, or how hard it was/is to perform daily activities like reading, without getting tired. There are many approaches, but I think that you cannot use one size fits all. By targeting the type of person you have a better chance of making a connection and reaching out for support. 

 

You should also, if possible, verbally seek that support. I know it's hard to ask others, but they may not realize, or they may realize and just not know how to go about changing it, that you are feeling unsupported by them. If you can tell them, straightforward, that you feel they are not supporting you enough and you want them to, they will at least know that is what you are looking for. Telling them how you want them to support you as well, is very helpful. Open communication is the only way you will ever find the support from them that you need. Same thing goes for your hubby, who I hope is supportive. Perhaps counseling would help, if he's not. And it's important to let others know what realistic expectations YOU can meet. Often people don't realize (I don't believe it's intentionaly, it's just very hard to understand the toll EDS and other N symptoms can take) how detrimental N can be. It's obviously not realistic to expect us to plan and prepare a birthday party all day - as it will be much too stressfull and tiring on most of us. This will help build those bonds, and not only help them support you, but for you to better support them. It's just like someone with N taking a 24 hour job - it just isn't possible. You need to make clear what you can and cannot do, and why. But also try and work with them so that you can do some of it, just not all of what they might be asking. 

 

With Narcolepsy, I think we find more than just a disorder that is life-long and hard. I think we find ourselves, and truly find our paths in life. It's not easy, but it does force us to deal with things differently than others. I think anyone with a disability, disorder or disease has this same affect. They are not just some random gene mutation, but a purpose in life. At least, I like to think so, because otherwise, what's the point? 

 

Try and stay positive. I think I may have gone a little deep here. But hopefully some of it will help. And we are all here for you, so please keep us updated! I hope everything goes well!