It’s only a cold, so why am I so tired…

One of the annoying parts about having Narcolepsy is that the things that make so-called ‘normal people’ a little or somewhat tired seem to make me very tired.

Take changing time zones and jet lag, a topic I touched on in a previous post.  Non-Narcoleptics get jet lag and the sleep problems that come with it, however supposedly this only lasts a few days.  Unfortunately, for me even a small time change takes me at least a week to adjust to, and with bigger time changes I generally feel weird for multiple weeks (which is frustrating because it makes me think long and hard about flying between the US and Europe very often).  To me, how tired I feel after a time change seems way out of proportion to what I’m dealing with. 

Of course, you would expect that if non-Narcoleptics complain about being tired in a given situation, Narcoleptics (who are already struggling with a sleep problem) are going to be complaining even more in the same situation, however I think it’s more than that.  Simply put, I think I am just affected sleep and alertness wise more by some things than non-Narcoleptics (that, or I’m just more sensitive to them) because of my Narcolepsy.

There are other examples of this that come to mind.  A tough workout or a lot of exercise can leave me feeling quite tired.  A heavy meal in the evening sometimes makes me tired.  It only takes one glass of wine for me to start feeling tired.

But the one that comes primarily to mind at the moment is being sick.  For some reason, being sick just seems to make me  a lot more tired than normal, something that I have to suspect is related to my Narcolepsy.  Something as minor as a cold leaves me feeling much more tired than usual, which is annoying because my understanding is that the average person doesn’t get significantly tired when they get a cold.

I just recently got over a really bad cold, which reminded me (again) how tired being sick makes me.  I suppose that I can add this to my list of reasons why I need to start having a healthier lifestyle: perhaps I might spare myself some of the usual colds and such – and the added tiredness that comes with it.  (Fortunately for me, I don’t usually get anything besides colds.  The Flu just doesn’t seem to find me attractive, lol.)

One last thought: apart from the additional sleepiness itself, the tough part for me when it comes to these activities and being sick is the frustration and difficulty of having to fight more sleepiness, on top of the usual EDS.  That, plus I get annoyed with myself sometimes (“self, why do you need an extra nap after going running?!  it’s not normal!”).  And I hate being “not normal.”

I also worry about this when it happens when other people are around because I worry that they will think that I’m making this up or just being a complainer (“Sure, we don’t have Narcolepsy, but we’ve had Jet Lag/colds before and we know it isn’t that bad.  Just suck it up”).

Does anyone else struggle with being unusually tired when they are sick (even with a minor illness)?  I’ve never read anywhere that Narcoleptics are more affected by things that make the average person tired, but from personal experience I know that this is true for me.  Thoughts?

P.S.  I am planning on starting the FlyLady program today, and I was wondering if anyone would be interested in joining me in doing the 30 day plan…  If you are interested, send me an e-mail (nisfornarcolepsy@gmail.com) and we can talk!  I think it would be helpful to exchange e-mails each day with people on that day’s step, as a way of holding ourselves accountable and dealing with any hurdles or difficulties along the way.  The link above is to the free 30 day program.  There is also a book on the subject, which is wonderful.

P.P.S.  God bless all of you.  And blessings from across the Atlantic. :-)

Vote to fund Narcolepsy research in the Pepsi Refresh Project! (it’s quick, free, and easy)

Yesterday I discovered a new benefit shared only by legal US residents – and no, it has nothing to do with the joys of Shredded Wheat (my favorite cereal, which alas I cannot get here in Germany).  If you are a legal US resident, you can participate daily in the Pepsi Refresh Project to vote for which project will receive $250K.

I was quite disappointed because I really wanted to participate (and this is really saying something because I never vote for ANYTHING online). 

Why am I disappointed about not voting in some contest by a giant food company?  Because one of the projects is absolutely amazing and I wanted to help support it.  The project in question: a HUGE Narcolepsy research project done by the Stanford Center for Narcolepsy (this is the same as the first link, just so you know).

The project is called the International ImmunoChip Project.  Here is the description of the project off the Pepsi Refresh website:

“Goals

• Participate in ImmunoChip project testing narcolepsy samples
• Learn about the genes predisposing to narcolepsy
• Raise narcolepsy visibility to that of other autoimmune diseases
• May lead to eventual therapeutic interventions to prevent narcolepsy
• Narcolepsy may be a model for other disorders of the brain

Overview

Narcolepsy is common; it affects 1 in 2000 people, a frequency similar to to Type 1 Diabetes or Multiple Sclerosis.  With recent and exciting findings there is now no doubt that narcolepsy is caused by an autoimmune destruction of 70,000 brain cells producing hypocretin, a wake producing substance.  Despite recent advances there is little funding of narcolepsy research; less than one thousandth the funding that goes to Type 1 Diabetes for example.  This is unfortunate as narcolepsy may be the first example of a neuronal specific autoimmune disorder, and may be a model for other diseases such as schizophrenia, bipolar disorder or autism. 
The goal of the ImmunoChip Project is to compare and contrast the genes involved in over 20 autoimmune diseases (about 50,000 samples).  The funds from the Pepsi grant would allow for the Stanford CFN to include 4,200 narcolepsy samples in this important international collaboration increasing visibility.”

Sounds great, right? 

So here’s the deal: the two projects that receive the most votes will get the money.  If you want to help, you can vote once a day and it should only take 2 minutes (you can log in using Facebook so you don’t even have to register).

Currently the Narcolepsy project is number 92nd, which is a bit depressing, until you look at some of the projects that are doing the best.  Number 1 is funding a horror film fest and number 3 is building a weight room for a high school (seriously).  (Number 2 is AIDS research, so I’m not going to complain about that one, though, as I think that is a good cause.)

If a horror film fest and a high school can get so many votes, I figure, a cause as good as ours should be able to win if we can get enough people to bother to vote!  (I’m sorry, but I have trouble comparing the importance of helping people with difficult medical problems with the importance of a film fest or a weight room at some high school (at $250K that would have to be one heck of a weight room…)). 

If you would like more information on the project, check out this article on the project, written by REM Runner on her blog.

So, go vote now and remember to do it every day, if you can! (Where are those post-its, right?)  And then go and send an e-mail to everyone you care about and put it up on your Facebook! 

I know, like I said I never participate in these sorts of contests, but I think with this one we have a good chance if we can just be as committed as a bunch of high schoolers and their parents or a bunch of people who like horror films.  And if we still don’t win, then we wasted 2 minutes a day every day in June (the contest ends on June 30th).  But if we win…

As far as I see it, we have nothing to lose… we only can gain!

We can do this!

P.S.  Congratulations Julie (aka REM Runner) on completing your run and successfully raising $6,146 for Narcolepsy research!!!  (her goal was $5,000)  That is AWESOME and truly inspiring, not to mention that you must be in pretty good shape now!  :-)

If anyone wants to congratulate Julie, you can find her here, as I mentioned earlier.

Congrats again!

Dealing with Narcolepsy on vacation: my long weekend in London

Hello again, dear readers!  I apologize for being away for quite some time.  I assure you that everything is okay here with me, and I hope that everything is well with you!

Today is the 2nd of June, so allow me take the opportunity to wish you a happy beginning of the summer.  It’s gray and rainy here today in Berlin, but I’m still excited.  Summer! :-)

I just got back from a long weekend in London on Monday, so I thought that I would talk a bit about dealing with Narcolepsy while traveling.  My husband has recently been working in London for the majority of each week, which is how I ended up there. 

Neither of us had seen much of the city, so it was very exciting, and we had a blast!

The most important thing for me when traveling is to make sure to take my naps on time.  Normally I can put off taking a nap for a little while (say, taking a nap at 12:30 or 12:45 instead of 12) and still be okay, but when I am very busy and active and want to be at my best, I really need to take my naps right on time or else I get punished for it.  I do find that the more active I am in a given day (especially physically active), the more it is important that I take my naps on time.

However, it can be a bit difficult to stick to a nap schedule when you’re having fun or in the middle of seeing something new and exciting, especially if you’re with someone else.  Although I’ve done it for years, I always feel bad about saying to someone (even my close family or my husband), “hey, I know we’re in the middle of visiting XYZ, but we need to drop everything and have me sleep ASAP.”  I just hate being the party pooper, so to speak, but I really can’t help it.  This is just what I have to do to have a life.

Fortunately for me, my husband is amazing when it comes to understanding about me needing to take my naps.  He never complains about my needing to sleep, he doesn’t mind occupying himself and waking me up while I put my head down on a table, and he understands how important it is that I get my naps.  Sometimes he’ll even remind me to take a nap, as sometimes I will try to put off taking a nap just so I can keep doing what I’m doing.

I’m very lucky to have a husband who is so understanding about my sleep disorder.  He even automatically volunteers his sweater or jacket for use as a pillow if I want it, despite the fact that I generally drool a little when I sleep because I sleep with my mouth open (a fact that you were dying to know, I know!).

I was reminded once again of how lucky I am on this vacation when we had to schedule our sightseeing around my naps.  I’m very used to scheduling my life around my naps and I don’t feel bad about it, but it’s another thing to have another person schedule THEIR life around my naps.  I was thankful that my husband never complains about this aspect of the time we spend together because I already feel a little bit guilty about it without anyone saying anything about it, despite the fact that I can’t help it and despite the fact that this is the way it has always been since we were first dating.  I can imagine that it would make it much more difficult for me to take naps when he’s with me if he did complain about it, but he doesn’t seem to mind (in fact, I know that he doesn’t mind). 

There are two examples of the difficulty of taking naps when you are out and about or on vacation that I stick out in my mind from my trip, so I’ll share those with you. 

The first happened when we were visiting the Churchill Museum and the Cabinet War Rooms (see picture below).  My naptime happened to fall partway through our self guided tour, which was something I hadn’t thought about.  However, part way through the tour and separated from my husband, I realized it was significantly past my naptime and I was really feeling it.  I was feeling weak, I had that awful tired feeling in my eyes, and I was so unbelievably tired that I could no longer enjoy the exhibits (in fact I no longer even cared).  Having found my husband again, we arranged for me to go ahead to the cafe (which was at the midway point of the exhibit) and order lunch and then when he came I put my head down on the table and slept while he ate lunch (in the US I would just have bought some food and then slept myself but I’ve had enough experiences with people bothering me when I try to sleep on a table here in Germany that I decided to wait until I was with someone else who could explain, if necessary.)

The second example happened on our last day when we were touring the Tower of London (see picture below).  I sat outside while my husband went on the last tour because it was past my naptime and the tour involved climbing some very steep stairs and I was very tired (When I am unusually tired I have to be careful on staircases because my knees can get a bit weak.  I’ve never fallen, but it can be quite scary).  Upon my husband’s suggestion, we took a taxi back to the hotel instead of walking so that we could stay for this last tour and still have time to have me take a nap at the hotel before I had to go to the airport.

I also wanted to share with you all something I learned on my trip, although it sounds a bit trivial to mention it.  It was quite warm in our room at night, which made it very difficult for me to sleep the first night.  Unable to alter the temperature of our room with the thermostat and unable to open the windows because they were locked, I finally asked downstairs about the thermostat and was given a fan.  It never occurred to me that they would have fans or I would have asked earlier!  Anyways, this solved the temperature problem and I felt right at home (Let’s just say, I love my fan and my fan loves me.  I’m a bit of a fan addict when it comes to sleeping, but more on that another time.) 

 

I wish you all a happy Wednesday, and I look forward to bringing you all up to speed on things with me in the coming days.  It’s been awhile, and I have a number of things I’ve been wanting to talk to you all about… :-)

Ellie’s beginner fitness program, part 1

I’ll begin by reassuring you that I did not design this program… the personal trainer I hired did.  I am certainly not a fitness expert, just someone looking to get in shape.

I thought that I would share with you what the woman I hired to be my fitness and weight loss coach told me to do (she’s actually a Pilates instructor, but I hired her to be my weight loss coach/personal trainer).  There are two parts: a walking (cardio) program and a strength training program.  The great part is that it is really easy, and it doesn’t take a whole lot of time.  You also don’t have to do it all at once – if you can only fit in 10 minutes of walking or two exercises, than you can do that (it’s certainly better than nothing, right?).

Today I’m going to cover the walking portion of the program.  I will deal with the strength training program in another section.

First, we picked walking as my cardio because it is easy, I can do it anywhere, and it doesn’t involve going to the gym (which I hate).  It also can be quite enjoyable, if you find a nice place to do it.  And given that it is now spring, the weather is finally on our side (or at least more so).  Here, some of the trees are beginning to bloom, and some days have been quite nice.

The program is simple: I am supposed to walk a minimum of 30 minutes, at least 3 times a week.  More ideal would be 45 minutes to an hour, up to 6 times a week, but I’m trying to at least meet the minimum each week. 

Which reminds me: when I say 30 minutes of walking time minimum, that’s 30 minutes of serious walking time, not 30 minutes of walking time with a stop at the grocery store in between…  30 minutes of uninterrupted, dedicated walking time.  (For me, the difference is important because I walk to a lot of places anyway, but it isn’t usually all at once.)

The intensity of the walking is important, and you should do circuits (push yourself to walk fast for a short period of time, than walk at a pace you can maintain, then walk fast again, and so on).  You should also stretch your legs after finishing the walking.

My trainer also mentioned that it’s not a bad idea to find places that you enjoy walking in, for example, parks.  I’m trying to go walk regularly now at a park nearby. 

You could go “park-scouting” (I know, it’s not a word!), trying out different parks in your area.  You could also get in a walk by going somewhere new and enjoying the view while you walk by.  I know for me, if it’s enjoyable than I am certainly more likely to do it.

I’m very lucky.  Here in Berlin, we have an enormous amount of parks.  We are a very green city, in that sense.  :-)

Finally, a few words about the benefits of cardio.  The good news is that doing regular cardio should lead you to have a higher metabolism, which will help with the weight loss.  Cardio has also been proven to boost one’s mood, which couldn’t hurt, right?

Anyone care to join me in getting fit?

P.S.  I purchased a new phone over the weekend with a camera (my old phone was terrible), so maybe in the near future I will be able to share with you some pictures from Berlin… I don’t really have a good excuse anymore!

Staying up late, clubbing, all-nighters, alcohol…(All the things I don’t usually do because I have Narcolepsy)

I’ve been on a number of medications for Narcolepsy, but no medication has ever changed the fact that there are just certain things I have to avoid doing because I have Narcolepsy.  In other words, no medication has ever worked in a way that I could give up the lifestyle changes that have long been a part of my life. 

I do my best to accept the fact that I have to do what works best for me and not what works for other people. 

And yes, I often regret the fact that I can’t be more ‘normal’ when it comes to sleep, but at the end of the day, I can’t change who I am (a Narcoleptic) – and the simple truth of the matter is there are certain choices I have to make and things I have to deal with in order to live the life I want to live and feel my best, despite my Narcolepsy.

Unfortunately, when you’re 26 like me, the average person your age generally has pretty poor sleep habits, so when you keep to the more recommended sleep habits (a regular sleep schedule, 7-8 hours per night), you end up feeling like the odd man out.

Below, a short list of some of the lifestyle changes/ decisions/ realities that I have come to accept as just being part of my life with Narcolepsy:

1.  I can’t stay up late at night – or if I can it’s usually a bad idea because a) by the time I do decide to go to bed I’m so tired I’m breaking down and having trouble walking to the bed and/or b) I’m going to pay badly for it the next day when my sleep schedule is messed up and I am unusually tired all day (for some reason, I don’t sleep the same if I go to bed at say, 2 am, vs. midnight or earlier.  The later I go to bed, the more disturbed and weird my sleep will be…).  And yes, I know I’m 26 years old, but for me anything past midnight is really late.  I really should always go to bed earlier, but it’s hard when things are going on or I just plain don’t feel like going to bed.  But I try to be in bed by 11 pm (I’m always tired enough to go to bed then…).

2.  I have to make certain choices about going out at night.  Usually I avoid staying up late, even on the weekends, although sometimes I will ignore what I know I should be doing and stay up to watch a movie with my husband until 2 am.  Unfortunately, as much as I wish I could do it, I don’t usually stay out really late going clubbing or what have you because I just get too tired (and things are never fun when I’m way overtired).  Occasionally I will go clubbing or stay out late doing something else (for example, my husband and I went clubbing on Halloween) – I can usually force myself to stay up until 2 am if I have a nap late at night before leaving and provided that I have someone else with me to keep me from going home earlier (lol).  Sometimes I make the tradeoff and stay up late to do something, knowing I’m going to feel awful the next day (although I always think, oh, maybe this time it will be different and I’ll feel fine, lol), but I don’t do this on a regular basis.  When I do go out, I usually have to come home earlier than most people, but I’m pretty much okay with that as long as I don’t feel that I am ruining anyone else’s fun.  My husband would like to stay out dancing until 5 am – me, I can barely force myself to stay until 2 am.  I would really like to go out more often at night (and I know my husband would too), but I always feel badly about making us come home early, in addition to the fact that I just get tired right when the nightlife is “heating up.”  It’s a balance I haven’t yet perfected: figuring out how to “have a nightlife” without torturing myself with staying up way too late.

3.  I have no choice: I need at least 7 or 8 hours of sleep (really, 8), and often times I sleep more than that if that is an option.  I’ve never pulled an all nighter of any sort (I know!, how weird am I? lol).  I’ve tried to only get a few hours sleep at night in order to do something (say, finish packing for a trip), but it never works: I always end up going to bed.  I understand that many "normal people” (ie non-Narcoleptics) can get 4 hours sleep one night, drink a bunch of coffee, and act relatively normally (sometimes they even do this for multiple days in a row!), but this is completely foreign to me.  I mean, I hear that people do this and I’ve witnessed my husband do this many times, but personally, I’ve never managed to do this, kind of like I’ve never managed to levitate a cup of tea with my mind (although, on second thought, this analogy doesn’t work because my husband can’t do this either.  I don’t think.  ha ha).  I’m sure that I’m capable of getting only 4 hours sleep a night, I just think that the scenario would have to involve holding me at gunpoint.  Or a burning building.  You get the picture.  As a Narcoleptic, I have no choice but to get at least 7 or 8 hours, or else I’ll probably find a way to stay in bed and get them anyways (you know how it is: you manage to convince yourself that yes, you can get ready to go in 10 minutes.  Including your shower.  and you really do believe it – until you’re out of bed). 

4.  I have to take my daytime naps, which means that sometimes I have to do things differently than other people and miss out on things.

5.  I don’t drink much alcohol because I have Narcolepsy.  To be honest, I don’t think I would drink much even if I didn’t have Narcolepsy, but having Narcolepsy, I  do have to watch it with alcohol.  Lately I don’t drink alcohol anyways because of the migraine diet thing, but previously I would usually only have one alcoholic drink (max 2 drinks if they are spread out over more time) if we went out at night because alcohol has such a big effect on me.  It makes me sleepy (which isn’t good when I’m already tired at night), and it loosens my tongue a bit (something that being really tired already does to an extent), so that I start telling lots of jokes and talking way too much (if you’re lucky, I’ll start telling stories about my dead dog).  And when I’m really tired late at night, I already have more cataplexy than usual, but with alcohol this is worse.  Unfortunately, when I stay up really late and am way overtired at night, I tend to act a bit like I am tipsy or a bit drunk anyways (things are more funny than they should be, less coordination, slurring my words, etc.), so adding much alcohol to the equation is a very bad idea.  On the bright side: I don’t think I could ever be an alcoholic or a binge drinker or what have you.  I’m just way too sensitive to alcohol. Fortunately I don’t ‘need’ alcohol to get me on the dance floor.

6.  I don’t drive late at night.  I would never drive home at 2 am because I know that I am just too tired to do it safely, and unfortunately I don’t think a short nap would help all that much in this situation.  I also don’t think I would ever drive for many hours in a row without stopping and taking a break.  With driving, I have to take being tired very seriously.  When I’m tired, I’ll take a nap before I go, and if I really think that I am sleepy enough to fall asleep, I wouldn’t drive period.

7.  Did I say that this was a short list? ha ha, my bad.

What lifestyle choices have you had to accept since having Narcolepsy?  How do you deal with them?

P.S.  I know, I know, I haven’t been posting much over the past month.  I don’t know what happened, but I just haven’t been able to finish a post easily.  I got out of the habit of posting regularly, and now I find it is quite hard to write at all!  I’ll start posts, but I have trouble finishing them…  But I’m going to start making an effort to post regularly again (although probably more like every other day instead of daily)…  In upcoming posts, I’d really like to talk more about the mental side of dealing with Narcolepsy, for example, dealing with family and friends, deciding what (and if) to tell people about your Narcolepsy, and learning to accept what you can and cannot do.

P.P.S.  Happy belated Easter!  Here in Germany, Easter Monday was an official holiday so we had a nice long weekend… what can I say, this isn’t the US (Germans aren’t all that into political correctness, at least not like we Americans are.  Here, people have Easter break instead of Spring break…)

    

Advice from a fellow Narcoleptic: RedbAdGE

I am excited to present the first post in my “Advice from a Fellow Narcoleptic” series, where readers can hear the advice and stories of other Narcoleptics. 

Today’s advice is from a Narcoleptic with the TAS name  'RedbAdGE.’  Some of you might recognize his name from the Narcolepsy forum, as he is a frequent poster. 

I hope that some of you will find his advice helpful, as I did.  It is amazing what we can learn from each other.

And with that, here is RedbAdGE’s advice to all of you:  

Ellie,
Here is a small contribution to the guest advice you are compiling for the blog.  I hope you find some of this useful.
1.  Perspective:  We must accept the fact that everyone on this planet has their own set of struggles.  Some mental, some physical, some both.  Some obvious to any stranger, others hidden deep within.  Some are self-aware, others not.  Some struggles come with a label, others not.  To feel sorry for yourself is to lose the battle and to lose control of your life.  Accept the gift of being self aware in your battle with Narcolepsy.  You know your enemy.  Do not let it control your life.  Embrace the many joys in life.  Understand the challenges and savor the victories, no matter how small.  Be thankful every morning for these gifts.
2.  Narcolepsy with Children:  I believe our children are not only a blessing, but can serve as a means to battle with our enemy known as Narcolepsy.  The love we have for them is like Xyrem for the soul.  We should completely embrace the waking moments we have with our children to the fullest and we will make more beautiful memories with our children than most parents ever do.  My children give me the will to fight.  Spend as much time with them as you can.  With toddlers, sometimes that means letting them crawl all over you when the tank is on empty.  I am a father of two toddlers, and I will often lay down on the floor and tell them I am a boat, or a bed, or an airplane.  They will laugh and climb all over me while I am lying on my back and fast asleep.  Yes I can sleep through that.  I am also very willing to volunteer to be the one to lay down with them at night if they get scared.  This way I am still sort of bonding while in dream land.  Most of all, my children are the biggest motivating factor for me to stay on my medication and focus on any and all means to enjoy life with them to the fullest.
3.  Sleep Paralysis:  At one point in my life I was experiencing sleep paralysis every night.  I was lucky to have my wife there to help me with this.  I would try my best to sleep with one hand on her arm.  I would focus on trying to move a finger to tap her arm or dig my nail into her arm if necessary.  She knew that this meant I was paralyzed and she would shake me until I regained movement.  Many people will say that it is best to just relax and enjoy it when sleep paralysis sets in.  If that works for you then I suggest you continue as it is the best solution.  For some of us that is not an option as the mind tends to play tricks on you that are not easy to ignore.
4.  Problematic Habits:  Look for any habits you may have picked up as a means to stay awake when the daytime sleepiness sets in.  For example, my ankles are in bad shape today.  It was only recently that I realized this comes from all the years of twisting my feet and ankles in order to keep myself awake with the pain while not drawing attention to myself.  This is something I began to do subconsciously as an automatic mechanism to combat the fatigue when I was in a classroom and working a desk job.  I imagine for others it could be anything from repetitive finger popping, rubbing your eyes too hard, pulling hair, scratching, biting your mouth, etc.

- 'RedbAdGE’

Thank you so much for your advice, 'RedbAdGE!’  I really appreciate it, and I’m sure that my readers do too. 

I especially liked the part about how you spend time with your kids when you are really tired.  It’s very creative, and I don’t think I would have thought of it myself.

Anyone else care to share their comments, thoughts or questions?

Looking for reader stories and advice/ Guest bloggers

Some of you might remember that I mentioned in a post on things I want to do with this site in 2010 that I wanted to find some other Narcoleptics to talk about things on my blog that I am not very familiar with.  While I know a lot about Narcolepsy, there are a lot of things that I don’t have much or any experience with, and I was hoping to find some people who might be able to share helpful information and their stories with my readers.  I also think that there is a lot that we can learn from each other, and so I would like to be able to facilitate that here on my blog.  Although the comments section is one way we can hear from each other, it seems evident that this is not a particularly good way to share if you have a lot to say (I know I always have a lot to say, lol).

Here is a list of topics that I think are especially good candidates for this:

• Narcolepsy and being pregnant
• Narcolepsy and having children
• Narcolepsy and severe cataplexy; taking anti-depressants for cataplexy
• Xyrem (I did take this medication for many months, but as there is so much interest in this, I would like to hear from others as well)
• Support groups
• Sleep Paralysis (I don’t have this symptom of Narcolepsy)
• Narcolepsy and Fibromyalgia (I know a lot of Narcoleptics seem to have this disorder, although I don’t have it myself)
• Narcolepsy and disability
• Other topic 

I would also be interested in posting stories about dealing with Narcolepsy in general or about topics other than the ones listed above, if you think that your story/experience would help other Narcoleptics to better deal with their own situations.  However, although it can be interesting for people to hear the stories of other Narcoleptics, I am not interested in stories for their own sake.  Rather, I am interested in helping people better deal with Narcolepsy and everything that goes with it.  Whatever personal stories and thoughts I share on this blog, I do my best to focus on what I think might be useful or helpful to others, rather than simply talking about my experience or about my day.

In keeping with the purpose of this site, I would ask that anything I post would also be focused on sharing information and experience that might help other Narcoleptics, as opposed to focusing on the story of one patient’s diagnosis/treatment/etc.  I would also have the last say on what I choose to post, and of course I would need to see it before posting it to make sure that it is up to the standards of this site (not only as far as content goes, but also in regards to grammar, organization, etc.). 

If you think that you have something interesting and new to share with my readers and are willing to share it, please contact me at the e-mail address listed in my profile.  We will then be able to talk and decide how to go about things (for example, I can imagine that if someone has a lot of information or experience to share, it might be better to break things up into a series of posts over a period of time).

I do not expect this to be a big time commitment, and of course I wouldn’t mind changing your name or using a nickname or other alias on the post to protect your identity.  Posts do not need to be long, and I personally try to make them at most 1,000 words.

I know that some of you have your own blog in which you talk about Narcolepsy, so I expect that you would not be interested, but I thought that this would be a great way for some of you non-bloggers to help other Narcoleptics and share your advice. 

Anyone interested?

Enjoy the weekend! :-)

P.S. Tomorrow (Sunday) we have a time change!  Don’t forget!