[Mirianda]

Hi,

I have been diagnosed with N I think 3 years ago. (That's one of my problems, I can't remember much) They put me on alertec (modafinil, Provigil?) at first it was 2X 200mg /day. Went well I was on my parents insurance at the time and in Cegep (College) But when in Cegep my grades started to fall to the floor I was failing miserably and I had never failed before... I was confused I wanted to listen but fell asleep. Went through my first 2 terms without knowing and failed but at the 3rd term I was just so depressed I quit (my mom and sister tried to commit suicide, and one of my best friend DID commit suicide + I lost another friend died of a heart attack and it had only been 6 months) I had (and still am) my first relationship but I am driving him crazy (he left me last month but decided he loved me too much but asked me to change) but he loves me when I am "stable" I had never been so moody before I took the meds and I had souvenirs before the meds also now... I don't really remember much... I feel lost like a little child and I hate that feeling. I should be strong like my mom before she got operated for her brain tumor. I am strong but then it starts and everything looks so dull so dark and so sad as if I am never going to get out of it... Why can I be my Fiancé's Sunshine and his Century storm... What I mean is why those mood swings? Why the stomac pain, the migraines, the dizzyness, the feeling of being so lost and that he doesn't understand what I am going through. I just lost my Godmother (bless her soul) and the funeral is tomorow... I don't know where to go next... I feel fine sometimes... and then... I pass from hyper-Happy girl to angry crying... thing! Any Suggestion? (I'm 20 if it can help)

[psocoptera]

I'm not a hugging person, but you seem like you could use one *hugs*. I know when you are down it can feel like it is going to hurt forever, but it does get better.

If you think that the meds are making you moody, I would see whether you can get different ones. PWNs have enough to deal with already, and it sounds like you have enough on your plate emotionally without med side-effects adding to the burden. Also, I don't think alertec is the same thing as provigil, but I am not sure about that.

I am lucky enough to have insurance, so I have a psychiatrist who specializes in patients with chronic health problems. She is very sweet, helpful, and respects my opinion. I don't know where you are or whether you have insurance, but I have found it very helpful. She spends a whole hour with me and, as a result, knows me better than any physician I have ever seen.

My BF doesn't understand either, but he is supportive. For understanding, I come here and read posts or go to local support group meetings. There is something very satisfying about reading posts that you could have written yourself and knowing that you aren't crazy and you are not alone.

[Mirianda]

Well I think the worst part is that I want to keep up to everyones expectations. So at home I try and do as much as my Fiancé but then I end up with no time at all for myself or we get into fights because I have no patience left whatsoever. Then again... I can't be lazy I understand that and I don't really know how to cook and when I get back (at around 6 pm at night) well I don't want to cook even less cook fancy meals!! But my fiancé is so difficult regarding food that why would I want to try to cook and try to make a meal when he says its discusting or he can't eat that... Then again I try to get my accounting diploma so I could open my own office but still how will I get the money to study? Will I have the strenght to finish? I work full time and take my first accounting classes on Monday nights but I don't know how I'll manage to finish cuz my classes finishes at 10h10 pm my first bus passes at 10h15 pm I take another buss at 11h20 pm lets say add another 15 min so I get off of the bus at 11h35 and I have a 10 min walk home from the bus stop so 11h45 pm I still have to take a shower cuz I have been away all day so midnight I go to sleep but work at 8h30 am the next morning but have to wake up at 6h am cuz I still have a 10 minutes walk to do and my work is about an hour away. Anyone has methods to staying 'zen' with circumstances like this?

[merrymom1013]

Mirianda, on 09 November 2009 - 03:02 PM, said:

Well I think the worst part is that I want to keep up to everyones expectations. Anyone has methods to staying 'zen' with circumstances like this?

A chronic fatigue specialist puts it like this: All healthy "normal" people have 100% energy to use each day. Think of it as 100 pennies to spend. You spend so much getting up, showered, dressed, getting to work, working, etc. There are still quite a few pennies that you chose how you will spend. If you have a health condition that limits your ability to remain awake, or lessens your energy, you don't have 100 pennies. Maybe you have 80- if you do, you will have to make more careful choices, but you can "fake" a normal 100 penny day pretty well. If you only have 60 or 70 pennies, it's not so easy. Bottom line- you can spend your pennies however, but there aren't as many as most people have, so you'll have to economize somewhere. You can probably do any of the things you want, but maybe not all of them at the same time. For a lot of PWN, it seems that the right treatment can give you more pennies, but you probably will never have 100. I found this a good way to visualize the struggle- but I don't have narcolepsy.

[ridgerunner1]

I am always looking for ways to explain N to other people esp. loved ones and close friends...I have always been really good w/ words but most people still just don't get it. I think if I explain it to them the way you just did they will really be able to understand a lot better!!! THANK YOU!! THANK YOU!! THANK YOU!! http://narcolepsynetwork.org/forums/public/style_emoticons/default/biggrin.gif

[Andromeda1528]

I assume you've seen a psychologist about this? Although it is tough having Narcolepsy and some Narcoleptics struggle with depression, depression is not part of Narcolepsy and it sounds like you have psychological issues that go beyond your Narcolepsy. I don't think this sounds like a side effect of your medications. You mentioned suicidal thoughts, so I assume you have sought help and perhaps are on medication for it. There are a lot of anti-depressants out there, including some that are better for Narcoleptics.
Good luck!

Andromeda
-------------------------
nisfornarcolepsy.com (my blog)

[eldestpenguin]

Mirianda, you have way too much on your plate. I strongly agree with the pennies parable. You do not have as many as others; you will only hurt yourself by trying to spend as many as someone else.

I agree with another post about your boyfriend not having the ability to understand as well: the best anybody without Narcolepsy can do is accept. If your boyfriend cannot accept your limitations, the problem lies with him. By the same logic, if you cannot accept your limitations, neither can anyone else.

I will move on now to what you asked for, which was a way to deal. I have a number of tips that have been of tremendous help to me; I hope you find them helpful to you as well.

1) Stress will make any body worse for the running; this is especially true for anyone with Narcolepsy. I tried to do it all when I was your age as well, and the consequences were severe. I finally got to a point in my life where I decided that I needed peace, not pieces. Everything in your life will be so much better once you find your limits and balance. Be patient; it is a process.

2) Keep a journal, and make a daily entry. I actually like to use a day planner. The entry does not have to be long, just a quick note about how you felt that day and factors that might have contributed. I use a day planner because I am already recording my activities in it. This will help you find your limits.

3) I definitely feel that I accummulate energy deficits, and do my best to adjust my life accordingly. For example, if I were in your shoes, I would do as little as possible after work on Tuesdays and Wednesdays. To work all day and go to class Monday night would wear me down. I would have to rest on following evenings in order to perform at work on those days.

4) Simplify your life as much as possible. There are many ways to do this that people with all their pennies do not ever consider. Here are just a few:

a) Unless you work up a sweat or have a body odor problem, shower every other day. A shower may only take 15 minutes, but 15 minutes a considerable portion of my free time every day. As long as you do not stink, nobody will ever know it but you.

B) How much time do you spend in your day looking for things because you cannot remember where they are? Keys, cell phone, etc.? Create a "dump box" for these items. Quit looking for them. You can put said box anywhere that is convenient for you. I now habitually leave most items in one certain place. The more organized you are, the easier your life will be.

c) More on the dump box concept and organization: I frequently find myself in a big, disorganized mess because I am doing too much. One can create dump boxes for anything to make it easier to get organized or as an organizational tool. I have a dump box for mail, so that I can address it when I have time and it does not get lost. I have series of dump boxes in my bathroom cabinet; they are labeled "First Aid," "Feminine Products," etc. These are not even decorative boxes; they are just small grocery store boxes that I cut most of the front out of for easy access. Not only do I not waste my time looking for these things, but I think it helps in putting things away as well. I tend to put things away when I am tired, and it seems I do everything at half speed when I am tired. It sounds simple, but I really do believe that the big labels help me process and get things done a little faster.

d) Preparation of food, the cooking process, and cleaning up take a great deal of time. Convenience can be detrimental to your health, but it can be done. I now have the great luxury of not having to cook. However, I went many years without this luxury. The crockpot became my best friend. Most people think of roasts, but I quickly found that I could cook all manner of things in the crockpot. Throw the food in of the morning, set temp to low, meal is ready when you get home in the evening. One pot to soak while you eat, cleans up in minutes after eating. Let me know if you need some ideas on what to throw in a crockpot and how. This can be done on a very slim budget.

e) Almost everything about clothing can be time consuming. Think about this when you buy clothing in the future. I buy as many clothes as I can that do not have to be ironed. Many synthetic fabrics look great straight out of the dryer. Try to do your laundry in small doses; it can be overwhelming as a singular weekly task. Keep a box of safety pins by your hamper. Pin socks together when you take them off; mating socks can take a lot of time. Hang/store your clothes according to what they are: pants, dresses, dress shirts, casual shirts, sweaters, etc. Do not waste your time looking for something to wear.

f) Since you are in classes, study for short time periods with frequency. You will retain things better. Try to study in ways that are not just straight reading. I adapted all kinds of crazy methods when I was in school that helped keep me from feeling so groggy and helped my memory retention. Look on the Internet and see if there are songs on the subject matter; you might be surprised. Believe it or not, there is actually a catchy little tune about ATP synthesis. I also drew pictures, especially if a subject bored me out of my mind. Make flash cards and review them on your lunch break. Be creative.

g) Tell people no. Of course, be nice about it, but tell them no if it is truly not within your limits.

h) Look for every opportunity to combine tasks. You take a bus; what can you do while on the bus or waiting for it? Can you eat breakfast? Return a phone call? I combine many tasks, but it is also something that requires me to be mindful of my limts. If I am extremely tired, there are many tasks that I cannot combine and perform them adequately.

i) Make lists of things that you need to do and things you need to buy. These lists can be kept in a day planner. :) Eliminate multiple trips to multiple places. Buy items that you frequently run out of in bulk if possible, or make sure that they are always on the list. Also, buy some dry erase markers and make yourself reminder notes. I use dry erase markers to write on mirrors and the fridge. It can also be a fun way to remind someone in your home that you care about them.

j) Go to bed as close to the same time as possible every night. Let friends and family know that you do not wish to be contacted an hour or two prior to your chosen bedtime unless it is an emergency. Make sure you enforce it, and do not answer calls after your cut-off; there is nothing wrong with voicemail. I like the two hour span, but I can see where that could be stringent for some. The cut-off is multipurpose. One, allow yourself to wind down for a minimum of 30 minutes before you go to sleep. Even people that do not have Narcolepsy rest better if they have a relaxing routine (of their choice) prior to going to sleep. Two, it minimizes the opportunity to get worked up before you go to sleep. I can be so sleepy, but still have trouble going to sleep if I get excited about something or get upset. Three, it minimizes the risk of stress before going to sleep. Most people do not realize it, but talking to people frequently increases stress levels. Even conversations that seem pleasant and you enjoy very much can add a new task to your plate, bring you new concerns for someones well-being, motivate you to want to do soomething that you realistically do not have the time to do, etc. If you conversate with someone you care about, your brain is going to want to process it; do not set your brain into new processes before rest.

k) You have a boyfriend; it could be impossible to not conversate with him at night. However, it might work. My husband and I hardly speak in the mornings. We are friendly and happy, but neither of us are morning people. It works for us. The nature of our conversations change prior to bedtime. He may or may not talk. If he does talk, it does not require much feedback from me; he knows my brain is on the short bus at the end of the day. He also knows that I can get hyped up prior to sleeping. He usually speaks of something informative or shares a memory; it is kind of like a bedtime story. If I tell him I am sleepy tired, he does not talk to me. I am always sleepy and always tired, but using the two words together means I am shutting down. Oddly enough, he is the one that intorduced the term to me, and he is not a Narcoleptic. If he says he is sleepy tired, there is no more interaction, he is going to sleep, period. It really works well for us.

5) Do not expect people in your life to understand, but do expect them to accept. Sometimes it is easier for both parties if you just tell them how it is, rather than try to explain why it is how it is; people seem to be more accepting of simple facts than complex concepts. I have found that people will eventually ask why and how, but they have to process the acceptance first. It is actually difficult for many people that care about you to accept that there is something "wrong" with you, that you are somehow limited, or may somehow suffer. They frequently do not realize this themselves. So, initially, the more you explain, the more fuel you give them for argument. They really do not get it and do not realize what they are doing. This is when they start suggesting that you try this or that, perhaps suggest something useless like taking a vitamin, drinking more water, or getting more exercise. Naturally, this hurts your feelings, and might escalate to hurting theirs as well. This argument/dialogue can actually aid both of you in refusing to accept your limits. Keep it simple until both you and the other person accept the limit. "I do not want to do that right now; I do not have the energy." This is frequently rebuttled with, "Why are you so tired?" or, my favorite, "I don't have energy either; who isn't tired?" Respond simply with, "I have Narcolepsy" and refuse to continue that aspect of the conversation at that point if they remain argumentative. My favorite termination line is, "I would love to explain this to you; I believe that you want to understand. Please check out narcolepsynetwork.org when you have the time. Let's talk about this after you have had the time to do this."

6) Do not give way to living up to the expectations of others, and be reasonable about your expectations of yourself. This is actually sound advice for anybody, with or without Narcolepsy. I mean no offense, but your age is a relevant factor here. Many of your fears and concerns are common to people your age. You have a bonafide situation to deal with, but be careful not to blame Narcolepsy for everything; be reasonable. I say this for this reason: if you blame Narcolepsy for everything dissatisfying in your life, you will come to despise the disease you carry, and thus grow to despise yourself. It is not easy, but work on accepting Narcolepsy and its limits just like you accept everything else about being human. I could get more done if I had 4 arms, but I do not have four arms. I do not put thought into my limited number of arms; my entire life is simply adapted to use of two arms. This was pretty easy for me, as I never expected to have four arms anyway. You did not expect to have Narcolepsy, but you do. There is nothing simple about it. However, the faster you can accept that you have Narcolepsy, just like you accept the fact that you only have two arms, the faster you will attain a content life. I hope this makes sense; unrealistic expectations can be damaging. There are many people that cannot do the things you are doing now, and there is absolutely nothing "wrong" with them. Especially in your age range, multitudes of the population feel knocked on their butts daily for their inability to live up to unrealistic expectations. Everybody is different, and there is nothing wrong with simply being you.

I sincerely hope that a shred of this was somehow helpful to you. I wish you well.

[Mirianda]

Thanks for all the advice eldestpenguin, it is really appreciated. I already do have a dumpbox I was actually the one who suggested it when I moved in with my Fiancé. I know if I leave things lying around I will never find them again (even though we live in a 2 bedroom appartment) I want to buy myself a crock pot that is what I told my Fiancé that if he wants me to cook while I work during the week then buy me a crockpot and I will manage something with that. I read back what I wrote and in my current mood I wonder if I truly wrote that... I sound so desperate... But right now everything is okay, even though my Mom is losing strenght and that means well... I might lose her in the next years to come. I write it but don't believe it... I don't want to because I can't image how I could move on without her... I can't say suicide crosses my mind I know how much it hurts for the people left behind and I will never hurt enough to do that to others. Well... I'm in a good mood right now and I am looking for a more stable job closer to home (so no bus to take) and I could take my car (I love my car it's a new accent ^-^ ) If I do well I'll put money asside to buy a house because right now I have no parking for my car so it's at my parents home which is a 45 minutes walk from my appartment. My fiancé has his Jeep so we're fine but I miss my car. Anyways thanks for the advice I really am in a good mood at the moment and I don't understand why I felt so gloomy... I guess losing my Godmother didn't help because I wasn't there to say goodbye and I felt guilty but I talked with my Dad and he told me I had nothing to feel guilty about. It just happened.

Have a nice day everyone!