12 replies to this topic

[brijulene]

Hello all,
I'm new to the Network and I need some advice/sympathy. I've been diagnosed with narcolepsy (without cataplexy) for about 4 years. I'm in college so it seems like every semester I have to RElearn how to cope with this. Luckily, my professors have generally been pretty helpful, but I always feel like they're thinking "Yeah, yeah, she's tired, but come on. She's just being lazy." That's just what I think though. My biggest concern in this area is that my future employers might think the same thing. I recently finished my last semester for my Bachelor's degree (I'm going to teach English) and I still have a semester of student teaching that counts as work for grad school. So I've got a little time to figure out if I can do this teaching thing. I'm just worried that I'm going to let down my bosses and my students. I mean, in college there's an attendance policy and you're allowed to miss with no explanation. But what's going to happen if I just don't show up to my first class of the day? We all know that narcolepsy is socially unacceptable, and that's especially true in the education field. So, ALL EDUCATORS, especially those in secondary education, I'd appreciate your advice.

Also, related to the education field, I'm hoping someone out there could give me some advice on how you write papers and essays. Since I'm studying to become an English teacher, I have to write, A LOT. But it keeps getting more and more difficult for me to concentrate and figure out what to write. Then once I get started, it's a very slow process. I think lack of concentration and motivation is a pretty common thing for people with N, so I'm sure you know what I mean. I always put off my assignments then I get super stressed because I don't have much time to work. Right now I'm working on a paper that I have to have finished, like now, to officially finish my degree and to be able to enroll in grad school for my student teaching component. (Is it just me, or do people with N have an exceptional ability to find themselves in a place where everything is going wrong? I think Murphy (of Murphy's Law) had narcolepsy.) Any advice?

And on an unrelated note, do you guys find that your narcolepsy causes you to be a little more high-strung emotionally? I'm a pretty mellow person, but there are certain things - that aren't related to my N - that are very difficult for me to control. When situations come up in which these emotions are heightened, my brain shuts down. I don't have cataplexy, but all motivation and concentration goes out the window and I don't know how to keep myself from obsessing over that one thing that's bothering me. This may not be N related, could just be personal, but I'd like to know if anyone else has this problem and how you deal with it.

Thanks!

[MMK]

This is high level question whose ans. no one has but you have to find your own way.

Problem with memory is not with storage device of brain but due to Input Output device of brain has become lazy due to sleepiness

Visual memory is less affected as compared to verbal memory

In your situation It will like working 10 times harder than normal person

You have to find your own way with learning and teaching
I will suggest you try visual method to recollect while teaching etc.

This will keep you in control and make something interesting as compared to others.

[MMK]

I think put your query in points.

[brijulene]

I think put your query in points.

I appreciate your input, but honestly, I'm not sure that it is that relevant to what I was saying. While I do find that I have problems with my memory, that's not my main concern right now. And I understand that I have to find my own way in my education. I'm a graduate student so I've had plenty of time to realize that. But the reason I joined this site is to get different viewpoints on how to deal with the various issues I face with my N. Also, I wanted to be able to communicate with people who have the same concerns and frustrations that I have, which is hard to find. I hoped I'd find that here, but so far I've had you telling me to move my posts and reword them. I'm aware that I'm very "wordy" in my explanations; I've always been that way. But I think my concerns are pretty understandable, considering this is a help forum for PWN to just talk and try to help each other. I don't believe that you're intending to be rude, but I was hoping my initial experiences on the site would make me feel welcome and that I'd get some good advice. However, if my initial post is confusing and you'd like me to clarify specific points, I'd be happy to further explain myself in those specific areas.

[mayfield]

Hi there, I understand a lot of what you're going through. I'm in graduate school right now, getting a doctorate and the dissertation process is a bear. I have to do a lot of writing and this past year, especially has been very difficult...I've lost a lot of motivation, not all of which I can blame on narcolepsy. I'm also a writer and it can be a frustrating process trying to mold a creative force inside a narcoleptic mind. But I try and see the pragmatic strengths and weaknesses in how I think about things (that is, I can appreciate that everyone has a unique process and I'm not a special snowflake).

I actually really relate to the last paragraph of your first post...I kind of just mentally shut down when I am overwhelmed. We just had our two-year comprehensive exams (huge test; you have to pass to get your MA and move forward in the program). At a certain point I. Couldn't. Study. All nighters, extended studying: I physically couldn't do it. Luckily I knew the material well enough that I passed. Okay, so i don't have any great advice, but I understand your struggles...it is frustrating. Small goals are most manageable, and I'm pretty good at planning things out and then following through. Okay, I'm rambling now. PM me if you want to talk more.

[MMK]

I am 9 month old regarding this new life. So was not able to guide you properly.

I myself have bit concern about tiredness and lack of constant motivation to work against odd in spite of my desire.

I requested to move here that I keep in touch with education more because it is my love.

I think in this other person advice can even guide me.

Here everyone help other because all are sailing in same boat.

[MMK]

@ Briana

First I am happy to hear that you did your future education after diagnosis. I appreciate it . You are my motivator , I am 9 month old on diagnosis and presently learning how to do study again . I took new course and at starting only I felt sleepy. Everyone was confused and finally Dr. did diagnosis. And now better

I gave my exam 2-3 days back first exam after becoming sleepy.

My performance was down but i was happy I could perform.

You mentioned in your first post that you are pretty concern about your future employer not accepting it.

I think better senior patient who spend more years/ decade reply this post. They can be better guide.

[brijulene]

@ Briana

First I am happy to hear that you did your future education after diagnosis. I appreciate it . You are my motivator , I am 9 month old on diagnosis and presently learning how to do study again . I took new course and at starting only I felt sleepy. Everyone was confused and finally Dr. did diagnosis. And now better

I gave my exam 2-3 days back first exam after becoming sleepy.

My performance was down but i was happy I could perform.

You mentioned in your first post that you are pretty concern about your future employer not accepting it.

I think better senior patient who spend more years/ decade reply this post. They can be better guide.

Thanks MMK. That's great that you're learning how to study in ways that are best for you. I definitely understand that. And I can't imagine how much more stressful it must be processing information in a completely different environment than you're used to. That's very admirable. When I was younger, it was very easy for me to learn anything. I always had good grades in school and never had much difficulty understanding material. But since my N has become so prominent in my life, it's made learning so much more difficult. I never thought I would have to learn a whole new way to make my education work for me. I'm sure that must be part of what you're feeling as well. And it's very encouraging to hear that you're working so hard to do that for yourself. Thanks

[MMK]

Can you tell me how you studied. It will be exaggerated statement on my side but Helen Keller was handicap but way has to be made. If way don't exist then we have to draw way on paper. and then work on it to be implemented on ground.

[brijulene]

Can you tell me how you studied. It will be exaggerated statement on my side but Helen Keller was handicap but way has to be made. If way don't exist then we have to draw way on paper. and then work on it to be implemented on ground.

That's a good question. I think there should be a greater effort to give PWN some solid advice on how to study, since it's more difficult for us. That's something I'm still learning. Until a few years ago I didn't have to work very hard to make good grades and retain information. I wasn't taught very good study skills either. So now that my brain is having to work harder to process and retain information, it's even more difficult for me to keep up and learn like everyone else. It's frustrating though, because I'm trying to catch up and keep up with everyone else while also using their methods of learning, because they're the only methods I'm currently aware of. So my education has unfortunately turned into me just barely getting by. Which is unfortunate, because I think I'm very intelligent. But my grades don't reflect that.

Anyway, I've been trying to learn time management. I know that right now, the most important thing for me to do is know how much time I have and how much time I need to complete assignments. I'm naturally a procrastinator, but that doesn't work for me anymore since I always need a lot more time than I think I do. It's really important that I don't feel stressed or like I'm running out of time or I'll easily feel overwhelmed and my brain will shut down.

I also get distracted very easily, since it's difficult for me to fully commit my mind to a task. For that reason, I usually go to my school's library to work or I'll make sure I have earplugs in.

I've also been working on my state of mind in my education. I've always enjoyed learning, but it's really easy to forget the good things about learning when I'm stressed out and frustrated. So I've been trying to remind myself why I'm taking certain classes, why I'm studying to become a teacher, why the things I'm learning are important. If I focus only on getting something done or pleasing my professors, then the heart of the education process is lost. And I certainly don't want that.

[LynnH]

For what it's worth, I try to pay really close attention to the times of day when I schedule tasks or try to get cognitively-intense work done. I work in administration in a public library, and about half of my time requires that kind of self-motivated effort while the rest is essentially reactive work -- answering reference questions, attending meetings, etc. I know that the best time of day for doing original work like writing reports, planning and organizing projects, tracking to-do items, etc. is between 9:00 am and 2:30 pm. When I can, I avoid scheduling meetings and appointments during that time to leave as much of that block open as possible, stacking the deck in my favor, so to speak. Between a couple of naps and a lunch break, it gives me about four hours to do that stuff. I know that scheduling a meeting or a training session at 8:00 am means that I'm more likely to drag myself out of bed and get to work on time, because I'm responsible to the other people who will be there. And if I save the reactive stuff for 2:30 pm or later, my lack of motivation doesn't get in the way -- it's hard to say "I can't work on this right now" when there's somebody in front of you asking you a question.

It sounds like you're already doing other things to "stack the deck" for yourself, like studying in the library and wearing earplugs. Try to think very intentionally about other obstacles you might remove, or advantages you might give yourself. At work, I have a sign I hang on my door telling folks I need to concentrate, and that they should let me know if there's an emergency, but to send me an email otherwise, and then I turn off my email so it doesn't distract. I've signed up for a service called RescueTime (http://www.rescuetime.com), which runs in the background on my computer, and keeps track of how much time I spend using particular software or on particular websites. That data alone is really helpful, but then I can classify certain activities as "very distracting" and tell it to keep me from using those during a set period of time if I really need to buckle down. Another thing I do is to listen to music -- it seems to engage the part of my brain that would otherwise be running a distracting stream-of-consciousness, or being self-critical, or daydreaming, or whatever, and to let the working part of my brain do what needs to be done. I got myself a relatively inexpensive pair of noise-canceling headphones so my music doesn't bother other people, but also so that outside noises don't bother me. And then when I'm really struggling, I use a vibrating timer to allow myself a 10- or 15-minute break every hour during which I'm "allowed" to be unfocused. If I get on a roll, I can always ignore it, but getting up and away from my desk when I'm not as productive as I'd like to be gives me a chance to reset. These things might be helpful to you, too, or you might find another set of them that work better; regardless, the more chances you can give yourself to succeed, the better off you'll be.

Finally, I can relate to some of the anxiety you're feeling, especially feeling overwhelmed and shutting down in the face of it. I think it would be worthwhile to explore the resources that might be available on your campus that aren't targeted specifically at people with narcolepsy, but whose symptoms are related. An academic counseling center will probably have programs or services for folks with attention disorders, a lot of which manifests itself in the same way that our lack of focus and time management do. You probably have access to mental health resources, too, which are likely to be of the more short-term, problem-focused variety than more traditional psychotherapy. People who deal with depression and anxiety have some of the same problems with motivation and paralysis we do, and while the neurological basis for these symptoms is totally different for people with mental health issues, the strategies for managing those symptoms is very much the same. You might see if you can get some short-term coaching on those issues that focuses on how to change anxious and unmotivated behaviors.

Hope at least some of this is helpful!

-Lynn

[MMK]

Thanks for Rescue time information. Let me try. Let me check how much time I waste . It will help me in managing time. Time is most precious thing to us . We have less hours compared to normal person. We need time to enjoy in proper direction

[MMK]

@ Briana

There is one Narcolepsy Support group in Facebook.
There one girl from UK did graduation and Post graduation struggling when Dr. could not make her diagnosis . It is concluded she too have excessive sleep disorder mostly idiopathic Hypersomnia not sure. But at end all are struggling

She can guide you I feel so , Try to post there on facebook. May be some solution you will find

Name of that lady is - Anne Wollenberg (She is moderator of that group I suppose)

Face book name - Narcolepsy Support Group

Members -1330

Direct link I don't know whether it will work or not try it
http://www.facebook.com/group.php?gid=2212151373&v=wall&story_fbid=418794611373#!/group.php?gid=2212151373