N is for Narcolepsy

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

2010-06-29T19:47:00.001+02:00

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)

2010-06-03T10:47:00.001+02:00

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

2010-06-02T13:10:00.001+02:00

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

2010-04-14T11:42:00.001+02:00

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)

2010-04-07T08:23:00.001+02:00

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

2010-03-16T22:33:00.001+01:00

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

2010-03-13T11:06:00.001+01:00

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!

Sniffing peppermint oil and drinking something for a bit of pick me up

2010-03-12T08:07:00.001+01:00

I wanted to share with you two of the things I used to do in college to help me stay awake in lectures where I was prone to falling asleep: Aromatherapy and drinking something.

I had a tendency to fall asleep or have micro sleeps during some of my classes, especially those near my nap times or first thing in the morning, which made it difficult to get anything out of the lectures or have readable class notes afterwards. However, I discovered two things that helped me stay a bit more awake and keep me from constantly nodding off: sniffing peppermint oil and drinking water or a hot beverage.

I know, it sounds stupid. If Concerta can’t keep you awake in class, you have to laugh at the thought of peppermint oil or tea doing any good. However, for me, these two things made a big difference.

For the peppermint oil, I would put a few drops of peppermint essential oil (not too many or your nose will hurt and your eyes will water) on a Kleenex, and then I would periodically sniff it during class. I felt weird doing this (I had to wonder, did people think that I was strange? sick?), but since I would nod off otherwise, I was okay doing it.

Now, don’t get me wrong, I’m not a big believer in aromatherapy, however, for me, I do feel temporarily more alert and awake after sniffing peppermint essential oil. It may also be the case that it also helped having to take the Kleenex out of my pocket and stop taking notes, as it would break up the monotony of listening to the lecture that would otherwise put me to sleep.

Finally, we have the drinking part. I found that if I sipped something during class, it also helped me stay awake a bit better. Again, I think that most of this had to do with the fact that I was doing something different to break up the note taking. Changing from note taking to drinking water or tea seemed to help keep me awake longer. (I know, it sounds difficult to believe, right?) You know how if you are having trouble staying awake somewhere and kind of nod off but are still working, something like dropping your pencil or having to push your mechanical pencil top to get more lead can jolt you awake again (even though you hadn’t realized that you were about to fall asleep). For me, I thought a hot beverage worked the best, but a water bottle or something else also helped a little (If you read the article on temperature and Narcolepsy, than you know that drinking hot beverages might help you feel more alert and awake during the day, according to one research study).

I expect that with the aromatherapy thing, other scents might work as well. Orange is also supposed to have an energizing effect. I expect that other forms of using essential oil might help as well (such as peppermint tea, lotion, device that puts the scent into the air, etc.), although I haven’t tried any of them.

I have also on occasion used the peppermint oil trick to stay awake in other situations outside of the classroom.

Does anyone else use aromatherapy to help them stay awake? Thoughts?

Article: Scientists claim junk food is as addictive as heroin

2010-03-09T14:52:00.001+01:00

Yesterday, I came across an article that I had to share with all of you, even though it is not about Narcolepsy. The title of the article, “Scientists claim junk food is as addictive as heroin,” pretty much sums it up: researchers at one institute have discovered that “the brain responds to junk food (salty, sweet, and fatty processed food) much the way it does to heroin.”

That finding alone was pretty shocking to me.

Here I am, Miss “I’ve-never-so-much-as-touched-illegal-drugs-or- even-cigarettes,” thinking I’ve been so good about keeping away from the really bad for you, really addictive things, when it turns out that junk food (although not as bad for you as illegal drugs) is just as addictive… My jaw just dropped.

But it gets worse when you read about the rest of their findings: according to this study, eating lots of junk food actually decreases the sensitivity of the pleasure centers of the brain (!), causing one to eat even more junk food just to get the same response as before. Now you understand why the scientists are saying it’s like heroin…

I have been thinking about this article a lot today, and now I can’t help but look at junk food and obesity a bit differently. Unlike, say, a heroin addiction, addiction to junk food isn’t really taken all that seriously in our society, despite the fact that so many people suffer from it. If junk food is really as addictive as heroin (which it is in rats apparently), then clearly resisting it is more than a matter of finding more willpower.

If you have trouble putting down a bag of potato chips, one has to think now that the problem isn’t just a matter of willpower (as many people would imagine). In fact, it’s far more serious… and after reading this article, I have to think that maybe we as a nation aren’t taking the problem seriously enough.

I also couldn’t help but ask myself, if the pleasure centers of the brain actually decrease in sensitivity when you eat lots of junk food on a regular basis, does that mean that you get reduced pleasure from other non-food related activities as well? If the answer is yes, than that is extremely troublesome. However, the article did not deal with this question.

I know that many Narcoleptics struggle with weight issues and food issues, so I thought that some of you might be interested in this. I would definitely recommend that you read the article if you are interested, as it says some other things that are interesting as well.

Thoughts?

Concerta, Adderall, and questioning my own calculus

2010-03-03T13:04:00.001+01:00

A few days ago, a reader posted a comment on my post about feeling tired after eating, saying that they used to feel that way before they started taking Adderall. Which got me thinking: should I reconsider my decision to not try a new (and stronger) stimulant?

About three years ago, I resigned myself to taking a higher dose of (only) Concerta to treat my Narcolepsy, despite the fact that I wasn’t happy with how awake I felt on it. I had tried to add Xyrem and then Provigil to it, but neither worked well for me.

For years, Concerta worked great for me. Now, I question how much it is doing to help me (and have questioned this for a long time now). A few weeks ago, I was unable to get a prescription for Concerta from my doctor for a week because he was on vacation and so didn’t take any, and I was surprised to discover that I didn’t really feel all that different. A little bit different, I suppose, but it wasn’t as noticeable as I would have expected it to be.

I have known for a long time that Concerta wasn’t doing much for me, but I have been reluctant to try one of the higher level stimulants because I know that they tend to have more side effects. I have mainly been thinking about Adderall, because from my research I have read that it is the next strongest stimulant after Concerta (with Dexedrine being stronger than Adderall).

I am concerned about Adderall’s potential to cause depression and anxiety, as I have struggled with these things in the past. However, I do see the same warning about people with these problems for Concerta on drugs.com, so I’m not sure how much I should be concerned about this (maybe all stimulants have such warnings?, I don’t know).

And, okay, I’ll admit, I’m also just a bit scared to try taking something stronger than Concerta, especially with all the warnings these medications come with (heart warnings, etc.).

However, now I have to ask myself, shouldn’t I at least try something else and see how I feel? Sure, it sucks trying to change a medication because, at least for me, it seems that a lot of the time I just end up being disappointed when I get unacceptable side effects (in addition to the pain of trying a new medication).

Now I find myself going back and forth between resigning myself to the sub-par medication I know (and whatever side effects I get from it- I don’t know anymore what those are) and the unknown medication that might very well be worse. It’s a tough one.

Anyways, despite having said for 3 years now that I’m not willing to try Adderall or Dexedrine, now I’m starting to reconsider my position. Now I’m starting to think that maybe I should consider my last remaining options – options which don’t sound great to me, but I do know that many Narcoleptics take these medications.

I am trying to gather more information on this from other Narcoleptics who take Adderall or another stronger stimulant, both to figure out if I want to try something else and because I know it’s going to be difficult to convince my doctor to prescribe me something stronger. (It’s another story, but I’ve been told that here in Germany doctors normally only use Provigil or Xyrem to treat Narcolepsy. It was quite difficult for me to get my doctor to prescribe Concerta for me (off the label), despite the fact that I had record of me taking it for Narcolepsy for at least the past 10 years. I have to expect that it would be even more difficult to get a stronger stimulant, especially since I can’t point to two other sleep doctors prescribing this for me in the past. I get the impression that Narcolepsy treatment is farther along in the U.S. …).

Do any of you take Adderall or another stronger stimulant (or have done so in the past)? I would love to hear what you thought about it and what your doctor said about it, both to aid me in my decision and, in the case that I were to decide to try something else, to help me convince my doctor to consider prescribing me something else.

Thank you in advance. :-)

Article: “Stop funding homeopathy, say British MPs”

2010-02-28T09:12:00.001+01:00

For those of you interested in alternative medicine, my husband sent me the link to an article that might be of interest to you. The article is about the British healthcare system and homeopathy.

I know I previously had briefly mentioned that I personally don’t believe in homeopathy, although I know that many people do. (Here in Germany, homeopathy is WAY more popular than in the US. As in, if you ask a pharmacist for advice on medications to treat a cold, they will give you nose cream, decongestant, another decongestant thing, plus the homeopathic remedy.) I also talked about my brief experience with visiting a homeopath.

The article is titled, “Stop funding homeopathy, say British MPs,” and it is about a House of Commons committee that has recently recommended that the British (public) healthcare system stop funding homeopathy because it has not been proven to be any better than a placebo.

I was surprised to learn that they have spent so much on homeopathy to begin with.

What do you think?

Apparently we’re not the only ones taking a nap during the day…

2010-02-26T10:37:00.001+01:00

I was surprised to learn that according to a study done in 2009, nearly a third of American adults take a nap during the day. Apparently us Narcoleptics aren’t the only ones who are taking naps.

And to think that all of these years, I thought I was so strange for taking daytime naps :-).

The study also found that the results differed based on age, income, and race.

Taking scheduled naps at work (part 1)

2010-02-25T08:19:00.001+01:00

Given that I am a strong proponent of taking scheduled naps, I thought I would write a few more posts talking about how I make this happen in real life. I can only imagine how daunting a task it would be as an adult to start to take such naps, what with all the pressures an adult has on them that a child does not (the most obvious being work). I know that at age 9 it was no small feat to adjust to taking them and to fit them into my life, and that was with the mostly fixed schedule of the school day, in addition to the other activities and plans that kids have (for example, sports).

Life has only gotten more complicated as I have gotten older, and I can imagine that a change like this would be hard to make as an adult. This is certainly one of the added benefits of being diagnosed so young: I grew up taking naps, so it isn’t as big of a deal as it might otherwise be. To me, taking naps is just about as ingrained as brushing my teeth in the morning. It’s just something that I have to do to live and function properly.

With that, I share with you what I have learned in taking scheduled short naps at work, in the hopes that perhaps it might help you as you figure out what works for you. In this post, I am going to focus on the first of the two scheduled naps, the noon nap, however a lot of things I will touch upon will also be relevant to the topic of the second nap. I will deal with the nap at 3 pm in another post, and if it gets too long I will add another post as well.

As far as taking a 15-25 minute nap around 12 pm (preferably at exactly 12) goes, the lunch break is your friend. You are going to need that lunch break to take this nap. Fortunately, it’s long enough that you should be able to take a nap and eat lunch (provided you bring it from home or eat out nearby). You might even have some time to spare, especially if you only take a 15 minute nap.

Thank goodness for lunch time. Although it can be hard if everyone else normally does other things during this time (like go out to lunch for the whole hour), this is generally a fairly easy time to fit in a nap without many people noticing or caring, as everyone is taking a break of around an hour to do whatever. Or, at least it’s easier than the 3 pm nap.

The great thing about naps is that you can take them almost anywhere. All you really need is an alarm clock (you can use your cell phone, although I prefer a real alarm clock), a place to do it, and something to lie your head on (a pillow/sweater/jacket/etc.).

The Ideal Workplace Nap: In a perfect world, you would have a bed, but unless you are extraordinarily lucky (say, you work in school, which has a nurse’s office with multiple beds…), you can count yourself lucky if you get a couch. Occasionally this might actually be a reality – I had an internship at a non-profit organization once where I used to take my naps on the big couch they had in the middle of the room (they were totally cool with this; no one even cared). Besides being on a couch, the ideal workplace nap would be in a quiet, dark room where you would not be disturbed, and you would also have a blanket, in case you might get cold.

However, if you’re going to take naps everyday at work, unfortunately, you’re probably going to have to take “the Less than Ideal Workplace Nap” most of the time. So let’s talk about that.

The Less Than Ideal Workplace Nap: If you haven’t struck workplace nap gold, than you’re going to have two options when it comes to your nap: the two chair nap or the head on the desk nap. I’m going to be honest: neither is very comfortable or great looking, but they get the job done. If you really need that nap (me, I always really need it), than you’re going to have to be flexible as to how you get it.

The two chair nap: I’ve only ever done this one when the only place I could find to take a nap was a conference room with some chairs and no table, but I’ll mention it anyways. This is when you put your head on one chair and your bottom half (curled up) on the other chair. Then you lie down (I know, it’s a bit of a feat). It’s a bit strange, but you do get to lie down and you don’t wake up with marks on your forehead and pins and needles in your arms and hands and maybe your feet (like you might with more standard head on the desk nap).
The good old head on the flat surface (desk, table) nap: This one is pretty much self explanatory. You put your head down on a desk/table on top of something like a sweater and sleep. I’m really good at this one: I can basically do this one most anywhere. As a plus, this is definitely better than the head against the bus window nap, let me tell you. Another plus? It’s definitely less tempting to oversleep with this nap: it’s harder to get out of bed when you’re in your nice comfy warm bed, believe me, so you might get more out of your naps if you do this, strange as that sounds.

You’re going to have to get creative about about getting a decent nap at work – or any nap at all, for that matter. It goes without saying that your boss and the people you work with are going to need to know that you have Narcolepsy (give them the short explanation: “I have this sleep disorder called Narcolepsy where I get tired during the day no matter how much I sleep at night and I need to take two 25 minute naps a day, one at 12 and one at 3, to deal with it, in addition to medication. And no, I don’t randomly fall asleep mid-conversation like in the movies.”) and not to disturb you during your nap unless it is a real emergency. This is important, because otherwise people are going to keep waking you up during your nap, which will reduce the benefits you will get from taking one. (They may very well wake you up regardless through ringing phones, conversations, etc., but you should be able to prevent some things, like people calling you, coming to talk to you, giving you work, saying your name, or asking if you are okay, by them knowing what’s going on.)

It goes without saying that you are going to want to find the best nap taking place that you can (as quiet as possible and preferably dark or at least not with glaring lights that are going to make it hard to sleep). Ideally, it would also be somewhere where there are no people, because where there are people, there are people who can wake you up when you’re trying to sleep (they can bump into you, have a loud conversation an arm length’s away, their phones can ring, etc.). It’s also just nicer to be able to take naps without people watching you. That way you don’t have to wonder what they are thinking or worry about how you look doing it or what have you.

If you work in a big office in a cubicle or with lots of people around you, you’re probably going to want to look into taking a nap somewhere other than your desk. Although you can do it, there really isn’t anything worse than trying to take a nap in a cubicle with people’s phones ringing every 4 minutes and the people nearby having loud conversations about nothing (despite the fact that they know you are trying to sleep). If you work in a relatively quiet workplace or a small office, you might very well be able to just take a nap at your desk. I have often done this at the places I have worked…

If you work in a big office, one option might be to take a nap in a meeting room or conference room, if one is available. Don’t be afraid to ask your supervisor or human resources for help, if you think that they can help you make this work. When I worked briefly for an advertising agency, it was my supervisor’s idea that I book one of the meeting rooms for both naps straight through the week first thing every Monday, something I wouldn’t otherwise have been allowed to do. This was the only way my naps would work, as although there were a lot of meeting rooms, people were often using them for non-essential purposes and many times it would be impossible to find one. Also, by booking the room, people would see on the chart that it was booked and they wouldn’t try to come in to what they assumed was an empty room (because there was no light on). I also just locked the door when I was using the room.

I will continue with this subject in another post, as this post is getting to be way too long!

What do you think? Do you take naps at work, and if so, how do you make them work? It’s always good for us to hear how other people make things work.

P.S. I thought this was cool, but it doesn’t look like it would be easy to set up, plus it would be kind of embarrassing to have around. Unless you work somewhere really funky where this sort of thing would be no big deal.

Foods that (supposedly) cause nightmares

2010-02-23T20:52:00.001+01:00

Lately, I have been suffering from nightmares at night. I didn’t use to dream much at night, but for the past few months I seem to just dream all the time. While I may like to watch TV shows featuring angels and demons, I don’t particularly enjoy watching such shows in my head at night, if you know what I mean. I think that it has been affecting my sleep quality big time, but I’ve been having trouble coming up with what I can do about it.

I did, however, find an article yesterday that claimed that there are certain foods that you should avoid eating before bed because they can cause nightmares. I thought this was interesting, as it had never occurred to me that this might be the case.

Below, I have copy pasted the relevant information about this from the website.

“Can Certain Foods Cause Nightmares?

With children, nightmares often occur after eating sugar, spicy, or exotic foods before bedtime. Eating sugar before bed often results in high blood sugar (hyperglycemic) for a short while, then, often after the person goes to sleep the body becomes low in blood sugar (hypoglycemic) and this is thought to contribute to nightmares. In adults, eating sugary, spicy or exotic foods, drinking alcohol or taking drugs before bedtime often precipitates nightmares.

What Do You Recommend For Nightmares?

For people who are dealing with nightmares, especially children, I recommend avoiding all forms of sugar, and graphic physical or emotional violence (television) for one to two hours before bedtime. I recommend that these people take vitamin B6 and amino acids before going to bed, and again if they wake during the night, to assist in keeping the body’s blood sugar balanced all night long.“

The website also mentioned that some foods should be avoided before bed if you have a sleep disorder.

“Dietary and Lifestyle Causes of Sleep Disorders

The following foods are known to contain tyramine, a chemical created in the breakdown of tyrosine, an amino acid protein. Tyramine acts as a brain chemical stimulant. The following foods and drinks are known to contribute to the formation of tyramine: all forms of alcohol, bacon, caffeine, cheese, chocolate, eggplant, ham, potatoes, sauerkraut, sausage, spinach, sugar, tobacco, tomatoes, and wine. People with sleep disorders should avoid these foods, especially at bedtime.“

What do you think? Is there really a link between what you eat and how you dream? Are there any foods you avoid eating before bed (other than caffeine)?

I am going to have to try this and see if it helps me with my nightmares.

(Note: the post’s picture is from: http://growlingjack.wordpress.com/2009/09/15/foods-that-cause-nightmares/.)

Narcolepsy research: Researchers find Narcolepsy ‘trigger’

2010-02-21T07:56:00.001+01:00

A few days ago, Swiss scientists announced that they found a ‘trigger’ for Narcolepsy, that could lead to new treatments. The researchers concluded that Narcolepsy is a result of an attack by the body on its own immune system, identifying antibodies that proved this.

To learn more, here is a very short article detailing the findings. I had might as well send you there to read about it, otherwise I will just be copying from the article.

It always makes me feel good to hear about new Narcolepsy research findings. Although it might seem to us that progress is so very slow, researchers are constantly making new advances, which in turn sometimes lead to new medicines. 17 years ago, when I was diagnosed with Narcolepsy, we did not have Provigil, Nuvigil, or Xyrem. We also did not have some of the newer anti-depressants used to treat cataplexy.

Progress is slow, but steady.

I do remember my sleep doctor saying many years ago that by the time I would be the age where I would want to have children, there might very well be a Narcolepsy medication that would be safe to take while I was pregnant. Unfortunately, that hasn’t happened and I have resigned myself to the fact that in a number of years I will have to go off my medication while I am pregnant and breastfeeding (as I’m not willing to take any risks as far as to my baby’s health). But there has indeed been a lot of progress, and I think we can expect more of that in the future.

Crystals for more energy? (yes, you read that correctly)

2010-02-20T01:17:00.001+01:00

Okay. So I’ve had this book on energy for about 10 years now, and it definitely falls into the alternative/New Age category of books. It is called, The Book Of Energy, by Cynthia Blanche. My step-mom bought it for me for Christmas many years ago.

Today I decided to take it out and look at it again, which got me thinking about crystals and stones and their supposed healing properties.

And then I remembered something: for a few years, I actually carried a turquoise stone (picture below) around with me (in my purse), in the hope that it would give me more energy.

But here is the part that makes me question my sanity: I remember believing that holding this stone in my hand would sometimes actually make me feel more awake, if only for a very short period of time. As in, I would be feeling really sleepy, and then I would hold the stone in one hand and then the other and feel more awake. (I know, this sounds a bit wacky, I think so too, but I do remember believing that this helped a little sometimes – and I’m not generally into this sort of thing.)

I think I must have lost my turquoise stone sometime in the past few years and just never bothered to replace it. I just can’t believe that I forgot about this…

Anyways, now I am curious to try this again and see if it helps. Even if you don’t believe that stones can have healing properties, perhaps there is some sort of mental thing/ placebo effect going on. Regardless, even though I felt silly doing it, I did like the feel of the stone in my hand – cool at first, and then warm from the heat of my body. I remember holding it sometimes when I would work on writing my fantasy novel (which I am still working on).

So, at the risk of sounding like a complete nut, I am now eager to find a place that… sells stones. Lol. I would like to get a few different ones this time; who knows, maybe I will find that one of them works better for me, or that none of them work at all.

In case you are also adventurous/ crazy (my husband thinks it’s this one), here are the most relevant crystals that my book mentions that have to do with increasing energy levels. (My book recommends holding stones in your hand in the store to see if “strong feelings are generated within you.” If they are, then that stone might help you.)

Amethyst: “This stone is both stimulating and calming. It helps relieve the effects of stress and is recommended for those who suffer from insomnia or restless sleep (that’s me!), since it induces a state of tranquility. The influence of amethyst assists the holder in overcoming addictive behavior and negative beliefs.”
Clear Quartz: “When held in the hand, clear quartz has been shown, through the use of Kirlian photography (no idea what this is), to increase the amount of energy in the body. It clears congestion and blockages of energy channels, and relieves fatigue and lethargy.”
Jade: “Blue Jade is a calming stone. Red jade is powerful and stimulating… Yellow jade improves a sluggish digestive system and tones the liver, thereby increasing physical energy.”
Turquoise: “It is a cooling, soothing stone… it helps the holder stay calm and balanced, thus more able to deal with matters.”
The book also lists Tiger’s Eye, Smoky Quartz, Labradorite (which has a cool name, and looks really funky), and Yellow Fluorite, but from the descriptions these sounded like they would be more useful for mental and emotional energy than for sleepiness/ physical energy.

Being me, I also had to google the topic, and I found a website that claimed that Rhodochrosite helps Narcolepsy, nightmares and hallucinations, and also migraines. Another website also said that Tiger’s Eye was good for Narcolepsy.

(The stone pictured above is Rhodochrosite; the stone on the right is Tiger’s Eye.)

Me, I would tend to go with stones that I can find easily, so assuming that I can find a place that sells stones here, I’m going to stick with the common stones.

Who knows: it couldn’t hurt, right?

I’ll get back to you on whether I think this helps at all… The good news is that stones are cheap, so if it doesn’t help at all, I won’t have wasted much money on it.

What do you think? Has anyone tried using stones/crystals for healing? Do you think that I am a little weird/nuts, or am I just adventurous, open to trying alternative things, and honest enough to share whatever I’ve tried and my thoughts with all of you? (Perhaps it’s a combination of the two :-).)

As always, I enjoy any feedback you have to offer.

P.S. I hired a new personal trainer today, and she is really nice and upbeat, someone I think I will enjoy talking with. There was a guy who clearly knew more about fitness, but I really liked this girl’s personality and I felt most comfortable and at ease with her. :-)

P.P.S. Because my husband asked, I thought I should mention that yes, those pictures on the Jackson post are actually of Jackson. (No, they are not pictures of some Labrador I found via google images search to make my blog posts look pretty.) Considering that my husband actually met Jackson once and as seen pictures of him before, I figured that if he had this question, than some of you might have it too.

Meet Jackson, my Narcoleptic Labrador

2010-02-19T13:08:00.001+01:00

When I was a kid, I was a big animal lover (and I still am), but I especially loved dogs. I wanted to get a dog soooooo badly, but my mother said that I couldn’t, but maybe I could get a kitten. Maybe. Then, I was diagnosed with Narcolepsy, and I was very upset about it. But it turned out that having Narcolepsy came with a surprising perk.

Shortly after I was diagnosed, someone called from the Narcolepsy research center at Stanford (where my sleep doctor was) and asked my mother if I would be interested in having a yellow Lab, who also had Narcolepsy. There were two dogs left, both 8 months old and perfectly healthy, and we could have one of them for free, provided we promised to get the dog spayed. They were done observing these dogs and were looking for loving homes for them with people who would understand Narcolepsy. Needless to say, my mother couldn’t say no, given what I was going through and how much I wanted a dog. I got a dog.

We went to Stanford and looked at the two dogs. Jackson’s brother wasn’t too interested in us, but Jackson (his name then was Haagen-Dazs) loved me and couldn’t stop licking my legs (I was wearing shorts). We picked Jackson, and I came home with a dog. My own dog. :-)

I was unbelievably happy, and for the next few years I was yellow Lab obsessed. My science fair project was about Labs, my birthday presents were Lab items, my English project was about a Lab, and so on. And Jack was special: he was the only being that I had ever met with Narcolepsy – and he was awesome.

I was very lucky.

As far as I can remember, it wasn’t so important to me that Jackson had Narcolepsy, although I thought that was pretty cool (Jack was just like me!). What was important was that Jack was a dog – and not just any dog: a Labrador! Smart, ultra friendly, cute and energetic (and as you can see from the picture, very hairy, lol). I had originally wanted a female Golden Retriever, but a male yellow Lab was close enough for me. What was important was that I knew that I wouldn’t have gotten a dog if I didn’t have Narcolepsy (although my mother never said that, exactly, but I understood).

I think having a dog made it a little easier for me to deal with having Narcolepsy. Now, as opposed to feeling depressed about having this life-long sleep problem (although I expect that I did some of that too, I don’t really remember very well), I was busy playing with my dog, telling stories about my dog, etc.

Jackson was a god-send.

I suppose I should tell you a bit about Jackson’s Narcolepsy. Jackson had Narcolepsy with Cataplexy, but he didn’t need any medication or special treatment. He slept a lot, but only when nothing interested was going on (I’m not sure how much he slept in comparison to other Labs). If something was happening, then he was there at the heart of it, full of energy.

Jackson’s Cataplexy was the most noticeable part of his Narcolepsy. Jack’s Cataplexy revolved entirely around food (This shouldn’t be that surprising, given that Labradors are kind of known for being pigs, lol.). Apparently food was what made him most excited.

At dinner time, when you set down his bowl of food, he would sniff it and then move backwards away from the bowl into a sitting position as if drawn backwards by some invisible force. Apparently the excitement would make his knees get weak, which would cause him to back up and sit. (The funny part about this was that when people would see this, they would say, “Oh, your dog is so well trained! He sits when you give him his food!” lol.) However, if he was really really excited about the food, he would collapse and fall asleep for a few seconds after he sniffed the yummy treat or tried to bite it. This was always really sad for me to watch, that Jack would have a hard time eating a bone or ice cream for dogs because he would keep falling asleep. He would end up lying on the ground, slowly eating his treat, with me clapping to wake him up when he fell asleep (this would wake him up and he would get up). After a little while, he wouldn’t be so unbelievable excited and he could eat whatever it was that made him so excited.

He didn’t seem to mind this, but of course he didn’t know that anything was wrong or unusual.

Now that I think about it, Jackson did have terrible cataplexy attacks very rarely, where he would shake on the ground and drool and be very scared for a number of minutes and we would have to comfort him. But I only remember this happening a few times, all of them when he was a full grown adult or a bit older. I remember one of these happening when he heard a very distant storm, as he was terrified of thunder. I don’t have these sorts of attacks, but I am pretty sure that this was cataplexy. It was very scary to watch an attack like this, and we felt so bad for him, but after it was over he would be fine.

The only other thing I noticed with Jackson as far as his Narcolepsy goes is that he used to dream during some of his naps. I could tell that he was dreaming, because while he was sleeping on the ground, sometimes he would grit his teeth and growl a little or make noises and his eyelids would flutter a bit. Or his legs would kind of move a little bit. I’m not sure exactly what was going on here (hallucinations? just ordinary REM?), but I was sure that this was because of his Narcolepsy.

Jackson may have had Narcolepsy, but he just seemed like an ordinary, very happy dog. He was a bit of a troublemaker, constantly finding new ways to outsmart our underground electric fence (ways the fence company hadn’t even seen before, lol), but he was a great friend, silly and loving and always up for doing whatever it was we were doing.

So the bottom line is, if all of us were Labradors, having Narcolepsy wouldn’t be so bad. (I can just see it: Note to self: Ellie’s posts always offer helpful tips like, one way to successfully deal with Narcolepsy is to become a dog.) Lol.

Anyways, I miss him very much.

One of these days I am going to have to get a dog again, but this time it’s going to have to be a breed that doesn’t shed so much because my husband is allergic to animal hair. (Sorry, Jack, you were great, but you shed A TON.) Maybe a Labradoodle?

I have heard some other Narcoleptics say that having a dog helps them cope with Narcolepsy, especially as far as getting out of the house and combating depression is concerned. I am just reluctant to get a dog right now, as living in an apartment I don’t have a backyard and also because I know how big of a commitment it is.

One of these days, it will happen.

P.S. I am going to have ask my dad if he still has this video clip of Jackson’s cataplexy that I used once in school for a presentation on Narcolepsy. I don’t have it anymore, but if I can find it I will certainly share it with all of you.

Does your body seem to act differently in the morning?

2010-02-18T09:05:00.001+01:00

I’ve always thought that it is very strange, but for some reason my body seems to act differently in the morning when it comes to Narcolepsy, sleepiness, and cataplexy. As far as I can recall, this has only been the case since I was 9 years old, although I have to admit that I don’t remember what I felt like in the mornings prior to that, so it’s hard to compare.

As I mentioned in a previous post on post-meal sleepiness, I seem to react differently to food in the morning. While my evening meal often makes me feel a bit sleepy, my morning meal – any food at all in the morning – generally makes me feel VERY sleepy. If I have the chance to sleep, it will be very difficult for me to resist. The strange thing is that eating food at other times of the day doesn’t do this to me. So while I can eat oatmeal in the morning and feel really sleepy, I could eat the same oatmeal at 3 pm and feel fine. Which I think is just plain weird.

But there are other ways that my body seems different, the most important and noticeable one being that I seem to have worse cataplexy in the morning than at other times of the day. Usually I only am annoyed by my cataplexy if I am way overtired or if it is late at night, however in the morning I also find that my cataplexy seems to act up. In the morning I have to be a little careful sometimes walking up or down staircases because sometimes my knees feel a bit weak (a very scary sensation when you are on a staircase) – or I will just feel that it is SUCH a big effort to lift my feet to climb just one staircase (when usually I walk up five flights of stairs to get to my apartment).

However, this is most noticeable when I try to exercise in the mornings. Over the Christmas break, my sister and I took a long walk on the hills of San Francisco (where she lives) for exercise, and my knees felt so weak some of the time, especially when we walked downhill. This doesn’t usually happen to me, and it was so frustrating, but it reminded me why I tend to avoid exercising in the morning.

I’ve also noticed that I just don’t have as much stamina or energy in the morning to work out, meaning that if I do get myself to work out I will be able to do less than I could do at another time of day. This is frustrating because I’ve always thought that it would be so nice and convenient to get my exercise in first thing in the morning so that it will be out of the way and to avoid putting it off all day long, only to find that I never got around to exercising.

When I was younger, I also noticed that often times if I ate or drank something that was sugary, I would feel sick. For example, drinking hot chocolate in the morning would sometimes make me feel sick to my stomach and weird. I think this is probably still true for me, although it is hard to remember exactly because I tend to avoid sugary foods like hot chocolate and pancakes in the morning because I worry that they will make me tired, which is unacceptable when I know that whatever I eat will probably make me feel tired anyways (and eating something sugary would probably just make me even more tired).

I also feel like I sleep a bit better in the morning (although I shouldn’t be oversleeping!), although I am not sure how much of this has to do with food, as I have a bad habit of going back to bed after eating breakfast if this is at all possible.

Does anyone else experience this? It seems so counterintuitive, however I am almost 100% sure that this has to do with Narcolepsy, especially because of the increased cataplexy symptoms. I mean, I have never heard of anyone having this problem before… but then again, I’ve never asked. What do you think?

P.S. Isn’t this an awesome picture? (below). This is the giant polar bear from the Olympics that is currently going on. A friend of mine guessed that it was about 10 stories high (!). And yes, those little figures in white are people!

picture source: http://inapcache.boston.com/universal/site_graphics/blogs/bigpicture/v2010open_02_13/v09_22122191.jpg

Narcolepsy research: Article on why lunch makes us sleepy (and how it affects our orexin molecules)

2010-02-17T09:51:00.001+01:00

Here is an interesting article, titled, “Siesta Science: Why Lunch Makes Us Sleepy.” Although the article is very short, it explains that glucose can block the neurons that make orexins, molecules that research has shown are already often reduced or malfunctioning in Narcoleptics.

If you are interested, I would highly suggest that you read this article. It’s not even a page long!

I think this has to be one of my shortest posts ever, lol.

Have a good day!

Making changes (focusing on the “multiplying effects” of one change)

2010-02-16T15:55:00.001+01:00

Today, I had a moment of creative brilliance while dragging myself through the frozen over snow and salty, sandy mess formerly known as the sidewalk to go to the co-working place.

I was thinking about how I should have been able to drag myself to this awesome co-working place more than twice in the past few months, and I was trying to think of ways to get myself to go there more often and make other changes, such as keeping my kitchen clean, when I came up with an idea. What if, instead of trying (and often failing) to get myself to make some important changes in my life everyday (for example, today I will clean my kitchen/keep the kitchen clean) using the same old method of making long lists full of changes I know it will be hard to get myself to do, I tried something new? What if, instead of trying to use the same old rationales to get myself to do something, I tried a bunch of new ones?

What if, instead of telling myself I must do xyz today for the same tired reasons that often fail to motivate me, I was able to get myself to make a big change by linking that change to a host of benefits I don’t normally think about? Maybe, I thought, I would do better to focus on making one change whose benefits would in turn help me to make other changes that would bring even more benefits, as opposed to trying to make a whole bunch of changes at once. And maybe, just maybe, doing some creative out-of-the- box thinking about the benefits of one change would help motivate me to do the things I have so much trouble accomplishing these days.

Think of it as the domino effect for self-help junkies. If I could knock down one domino, what other dominos would those dominos knock down? And what about the dominos that those dominos would in turn knock down?

Are you still with me? :-)

Here is an example: I have a hard time keeping my kitchen clean (an embarrassing admission, but I do my best to be honest :-)). Every day I tell myself, “today I will make the kitchen perfectly clean.” However, somehow everyday despite this resolution, I don’t do much to make this happen and the dishes pile up and I feel badly about it.

Usually I try to motivate myself to clean the kitchen by telling myself that I need to be able to cook, that it’s embarrassing, that my husband and myself will be happier if it’s clean, that as an adult I am expected to have a clean kitchen, that when I have kids I’m going to have to have a clean kitchen and cook a lot, that losing weight isn’t going to be easy if I can’t cook easily, etc. That’s the old way of thinking.

However, I decided today that maybe I should try a new way of thinking that emphasizes the positive (as opposed to saying, self, you MUST clean or bad things will happen or good things won’t happen!) when it comes to cleaning the kitchen. We will see if it works.

Here is the new way of thinking, in the form of a list.

“Multiplying effects” of cleaning the kitchen (things I don’t usually think about):"

Cleaning is not bad exercise, so by cleaning the kitchen I am making a little progress on my goal of getting more exercise and losing weight.
A better relationship with my husband. More specifically, no more fights about the kitchen.
A better relationship with myself. No more self bashing, worrying and guilt because of the state of my kitchen.
I can finally make a kitchen windowsill herb garden – and my plants won’t die because they get lost in the kitchen.
Cooking dinner will be faster because you won’t have to wash stuff first. (Obvious, but true.)
Now that I’m feeling better about myself, I will be more likely to have the energy to cook. This should also help me in all areas of my life – my motivation to do work, my mood, my emotional eating, etc.
I’ll save money – less wasting of food, no housecleaner needed, etc.
I can take this off the list of things I feel absolutely terrible about.
More/better sex. According to a book I once read, having a sex life like a porn star requires having a clean home. No, seriously. lol.
It takes much less time to keep the kitchen from getting dirty than to clean a messy kitchen. I’m saving time!
If I can keep the kitchen clean, it’s feasible that I can start keeping the rest of the apartment clean… and then if I can get over the 4 flights of stairs we have, I can get a dog… Let me repeat, I can get a labradoodle!
If I have a clean kitchen, I can easily cook good food, which should lead me to lose weight, which will lead to all sorts of other benefits. i.e. if I want to look great in a bikini, I should clean the kitchen. lol.

I could go on, but I think I’ll leave it at that. But basically, cleaning my kitchen would help me with all sorts of other things on my to do list and with all sorts of other areas in my life. I think that maybe I could come up with some more creative benefits as well if I thought about it more, so maybe I will have to do that.

But Ellie, you say, um, isn’t this supposed to be a sleep blog?

And yes, it is. But I was thinking that this strategy could be used not only for kitchen cleaning and other chores but also for making some of those changes that are important for us Narcoleptics. The ones that come to mind? Getting up at the same time each day, going to bed at the same time each day, and keeping to less than 30 minutes when taking one of my scheduled naps.

In fact, I’ll even do one of these sleep related ones for you, on one habit that I personally have trouble keeping to. Here it is below:

The multiplying effects of keeping a regular sleep schedule (going to bed and getting up at the same time every day):

I’ll sleep less and thus have more time for all the things I want to do. Regular sleep schedule = bubble baths, painting my toenails, playing computer games, reading, socializing, making homemade dessert, cooking, cleaning (wait, did I just say I want to clean?), working, sex, etc. etc. (be creative)
I’ll be happier and have a better mood because normally I beat myself up about not doing this. All of that guilt and worrying about oversleeping- gone! Woah, that’s a big one.
Because I’ll feel better… I’ll be more able to do all sorts of other not fun things, like exercising and cleaning the kitchen. And maybe I’ll even sleep better, because these days my dreams disturb me and I think I would sleep better if I felt better.
I will have fewer migraines (a regular sleep schedule is important for people who get migraines). Which means I might be able to eat cheddar again!, or at least lay in bed feeling terrible for fewer days each month.
If I can do this, then surely I can become better with not sleeping too much in my naps. I will have exercised my willpower, something I can take advantage of in pursuing any other goal I have.
I’ll admit, I don’t generally feel all that much better when I oversleep or sleep at weird hours. So I’ll have more energy and feel better with a regular schedule.
If I sleep less, I will be up and about more, which means a regular sleep schedule will help me lose weight. Regular sleep schedule = bikini? (These days I tend to sleep too much rather than too little.)
If I want to go to the co-working place, I need a regular sleep schedule so I can take advantage of their hours.
I’ll get more done. Be honest, self, how much do you get done late at night anyways? (Not too much.)

And who knows, writing out reasons like this might just help in and of itself, as writing things down is supposed to be more beneficial than just thinking about it.

What do you think? Anyone care to try this with me?

Paying It Forward: The Talk About Sleep Cookbook

2010-02-11T08:51:00.001+01:00

I wanted to share with all of you Talk About Sleep’s new project to create a cookbook in order to raise funds for its services. They are asking TAS members to submit recipes and also their “pay it forward stories” for this cookbook. A portion of the proceeds will be used to provide services to TAS members, including more scholarships to the Narcolepsy Network conference.

Here is the message from the TAS founder about the project, which includes a link to the webpage for the project. This link also includes other ways that you can support TAS, such as buying an ad on the site. They are also encouraging people to order their cookbooks well in advance.

I am certainly going to submit at least one recipe! Maybe even more than that…

I think the pay it forward philosophy is a beautiful one; that you “pay someone back” by helping someone else, who then passes the help to someone else and so on, leading to a giant chain of people helping others. If you haven’t seen it, there is actually a movie called Pay It Forward, which was really good except it had a tragic ending. I didn’t see why they had to make it tragic; it was otherwise such a positive film!, but oh well.

Is anyone planning on contributing a recipe(s) or buying a copy of the cookbook?

Weight loss advice from a fellow Narcoleptic (Part 1)

2010-02-07T10:30:00.001+01:00

Some of you may recall that I said that I wanted to have some guest bloggers this year to talk about things that I think they know more about than I do. Here is the first post, featuring advice from one of my readers, a fellow Narcoleptic named Jane. Jane recently e-mailed me a bunch of comments and suggestions relating to one of my posts about weight loss, as they were too long to post as a comment. Looking over them, I decided that I must share them with all of you because they were so well done and insightful. I personally have heard lots of weight loss advice over the years, but it meant a lot to me to hear it from a fellow Narcoleptic who has also struggled with weight issues, as many of us do. Thanks so much, Jane!

Here is the e-mail she sent me:

“Hi Ellie! I'm also a 26 year old American narcoleptic female who moved permanently overseas - nice to meet you!
First I want to tell you that you should not feel too much 'guilt' about your past weight gain.
A little background … I've probably had narcolepsy since I was about 8, if not earlier, and it was diagnosed at 18 - the week I graduated high school. I've been on Provigil pretty much since then.
A couple years ago, I went on a 2-month drug vacation because I was maxing out my Provigil dose and had the opportunity to take a break from both school and work. When I started the medication again (at a much lower dose), I felt one of its side effects very strongly - loss of appetite. I had not really experienced this side effect as much before.
I took advantage of my reduced appetite and started eating a lot less food than I had been, although I try to spread my meals throughout the day which sometimes mean forcing myself to eat. I also started a new job around the same time I started back on my meds, and ended up doing about an hour of brisk walking a day just rushing to the bus stop.
I can't really describe the relief I felt when I could stop thinking about food CONSTANTLY. And I mean constantly. I realized it's not normal to be so hungry and so obsessed with food and to think about it all the time and to never EVER feel full. When I'm off my meds, I feel like an addict and a slave to sleep and hunger. It's like that's the only two things that can affect my decision making, the only two guiding forces.
I lost 55 pounds between June 2008 and June 2009. (I'm slightly less than 5'9'' tall, medium build, and the highest weight i reached was 186). I ended up on another drug vacation this past November, not by choice but because it took a long time to get a Provigil prescription in my new home country. I gained about 15 lb. during this time and am now working to take it down - down 10 so far - then my goal is to increase my fitness/endurance level and tone up my body and maintain my weight.
And maintaining is the hardest part.
If you have been overeating all your life, it is not your fault or the cause of weak willpower. I am all about beating myself up, like lots of narcoleptics who went diagnosed for a long time, but I can now see that my appetite for food is about as out of control as my appetite for sleep. The centers for these two drives are right right next to each other in the brain. It might help you to be successful in your weight loss if you forgive yourself for what's happened.
You say: "I was tempted, of course, to deny this instinct with war cries of “This time I am committed! I will have more willpower! I won’t give up! I will give up all carbs and work out every single day for an hour, even if I’m sick!” and armed with more self-help weight loss and exercise books/websites than can possibly be healthy. "
I have found that "self-lecturing" voice to be very helpful. Making statements, even writing them down as you have here, can really go a long way as far as creating a reality for your self that you're dedicated to.
Here are a some pointers for weight loss that I've found work for me, but of course everyone's body is different.
-Take at least one day off from working out every week
-Have one cheat day every week where you eat whatever you want (i call it cheeseburger day!!!)
-Don't try to go too strict at once. For example, don't try to cut out ALL carbs - there's carbs in fruits and veggies, of which you should be eating as much as you want. Do try to stay away from bread and anything crunchy, most processed foods, etc. The only bread product I'm eating (except on cheeseburger day of course) is whole wheat wraps. The most important foods in my diet are tuna packed in water, boneless skinless chicken breast, homemade lowfat hummus, homemade salsa, natural peanut butter, eggs (1 yolk + however many whites I want, 5 days a week), 1% milk, low-sodium tomato juice, 5% cheeses, and tons of fruits and veggies.
-Eat LOTS of fiber. It fills you up and is great for weight loss in some other way I don't completely understand.
-The most important thing to pay attention to is calories in/calories out. Which basically means most foods aren't technically off limits, you just probably need to eat them in much smaller (and much-less satisfying) portions.
-An hour of walking a day can really make a difference and is a great way to start building your fitness level
-Aim to lose about 1-2 lbs a week
-Try to keep tempting foods out of the house. If your husband is a happy eater of junk food, this can be hard. Find out how much he's willing to support you. It's about 100 times easier to stick to the right foods when the wrong foods aren't staring you in the face.
-Try to make exercise fun. I'm bored out of my mind after 20 minutes on a treadmill, but I can go for an hour of much more strenuous activity when I'm playing one-on-one basketball with my brother.
-There IS such a thing as too little food. The bare minimum to prevent your body from going into starvation mode is something like 1050-1200 net calories (food calories in minus exercise calories out).
-Eat a fist-sized amount of food (mix of protein carbs and fat) before you work out so your body has some fuel for the work out. Also drink water BEFORE you work out so your muscles are hydrated and
ready to go.
-Don't eat in the two+ hours before you go to sleep (this is the HARDEST for me!!!) and try to eat your largest meal at lunch time. If you do this, you should be able to physically see the difference in your belly when you wake up in the morning.
I will say I could probably never have been successful without the appetite control I gained from Provigil. I've taken Concerta before and it's done the same thing for me, so I hope that can help you. And again, I wouldn't encourage a healthy person to take diet pills or to rely on medication for appetite reduction, but healthy people don't have to battle with the endless hunger I get from my narcolepsy, so I feel positive about this choice.
My energy level has definitely increased since I lost weight. My self-esteem shot to new heights and I overcame a lot of social anxiety that plagued me for years. Working out is difficult and often painful (I have fibromyalgia as well), but I feel incredible and very energetic after exercising
I believe you WILL succeed! For anyone living with a lifetime disorder that affects daily living in ways healthy people don't have to worry about, it's easy to sort of excuse something like weight gain, because it's caused by your condition. It's a much greater challenge, but by the same token, overcoming the odds and succeeding at your goals makes it that much more rewarding and boosts your self-esteem that much more. Feelings of helplessness/hopelessness and lack of control turn into the feelings of strength and increased control over your life and how you live it. I am 100% behind you - good luck ! :) Jane”

Thanks again for all of the advice, Jane! If you would like to contact Jane directly, you can reach her at takemantwo@yahoo.com.

Fitting naps into the school day (Part 1): elementary and middle school

2010-02-06T08:40:00.001+01:00

I thought it would be worth touching on the topic of fitting a nap – or naps – into the school day, as for many years this was a very important topic for me. My sleep doctor had told me to take one 15 – 25 minute nap at noon and one at 3 pm, however, as I recall it it was my mother and I who came up with ways to make this happen. I wasn’t always easy to accomplish, and it meant that I had to do some things that other kids never did, but it was worth it.

I dealt with my naps in two very different ways during elementary school and part of middle school. In 4th grade, having just been diagnosed with Narcolepsy, we dealt with my need for a noontime nap largely without help from my (public) school. Whereas, in 5th and 6th grade, I went to a private school and the school was highly involved in meeting my need for a mid-day nap.

4th grade: In 4th grade (back when we still lived in California), I would skip lunch recess every day and take a 25 minute nap against the window with a pillow in the school parking lot. I think lunch might have gotten out at 12:30 pm, and I would sneak off to the parking lot and nap in my mom’s car, which she would bring just for my naptime. This worked okay, except for the fact that I was constantly worried about being “found out.” What if one of the other kids saw me asleep in my mom’s car in the parking lot?, I would worry. What if people found out somehow? So out of fear of what other kids might say or think, I didn’t tell anyone but my closest friends what I was doing (and then I would only tell them if I had to take a nap while I was hanging out with them at my house or theirs).
5th and 6th grade: In5th and 6th grade I attended private school because my mother thought I needed the special accommodation because of my Narcolepsy (my other two siblings went to public school). The setup was that every day I would leave the sit down lunch we would have (assigned tables, prayer and all) after I finished (skipping dessert, which took some time) and take a 25 minute nap in the nurse’s office. This worked well, as the nurse would wake me up and it was usually very quiet. I had a bed and my own pillow and blanket, which was nice. Unfortunately, missing dessert only bought me maybe 20 minutes, so I was sometimes late to the class after lunch. One year I had P.E. after lunch, with the gym a significant walk away, so I was always late for that and would change my clothes in the nurse’s office. The other year I had math afterward lunch, but I could usually make it just as it was starting. However, like in 4th grade I didn’t tell anyone but my teachers why I was showing up to things late and leaving things early because I was very secretive about my Narcolepsy. No one ever talked about it, but obviously the other kids had to be wondering what was going on with me. I wonder now what people thought I was up to during part of lunch time, although perhaps they found out that I was taking a nap… (as anyone who walked into the nurse’s office during lunch would see me lying down).

Dealing with fitting a nap in during the school day is not easy, but I always found that schools and teachers were happy to help me deal with this (and I attended a whole bunch of different schools). And I’ve found that people in general are often very willing to help, provided that they know what you need and why you need it. For example, because I left lunch earlier than everyone else, one of the people who cooked the food for the sit-down lunch would always tell me what the dessert was that day at the beginning of the meal and then if I wanted it they would bring it out early just for me.

It takes some creativity… and you have to ask for help, but it’s completely doable to fit in a short nap around lunchtime at school.

Has anyone else figured out a way to fit in a nap (or naps) during the school day?

I will cover 7th grade through college in future posts.

Ellie’s recipe file: Taco soup!

2010-02-05T20:13:00.001+01:00

So, tonight I tried a recipe I’ve heard people rave about on a few recipe blogs: taco soup. The great thing about this recipe is that it is soooo easy. Basically, the main work involves having a clean pan and pot, browning some ground beef and opening a bunch of cans and dumping a bunch of things into a pot. And you can make enough with this recipe to have lots of leftovers, which means less cooking later in the week (or some tasty lunches)!

Now I’m no master chef (you know those people on allrecipes.com who take a recipe and make a whole bunch of changes to make it better? I’m not one of them, lol), but I made some changes that make this recipe quick and easy and give you more food. Instead of cooking my own beans (lol), I used canned ones, thoroughly rinsed. I used canned corn instead of fresh (you could also use frozen corn). I also added more beans, tomatoes, and rice so that we would have more leftovers.

I had never had taco soup before, but seeing the recipe, I was sure that it would be tasty, and it was. It turned out great – and was even husband approved!

Mine was more of a chili than a soup in the end, but if you added more water I expect that you could make it more soup-like. I served it with sour cream, shredded cheese, and tortilla chips.

Here is the link to the recipe I used (from the blog $5 dinners): http://www.5dollardinners.com/2008/08/taco-soup-and-sweet-watermelon.html

Enjoy and have a good weekend! :-)

P.S. As a follow-up to my post about my personal trainer, I did fire him and am now looking for someone new. I realized that I really don’t need the stress of dealing with the guy, plus it didn’t even make sense to see someone if they are hurting my efforts as much as they are helping them. This time, I’m going to interview a few people and not just hire the first person I meet.

Microsleep and Automatic behavior

2010-02-03T15:01:00.001+01:00

When I think about microsleeps and automatic behavior, one of the first examples that comes to mind is something that happened to me my freshman year of high school during a biology test. Looking over my test, I discovered that I had done something strange: the first few problems on the first page and all of the problems on the second page were correct. However, I had completed all of the problems on the first page as if they were all the same as the first few problems, which made absolutely no sense because the problems were so different. Essentially, I had gone through and done the mathematical process from the first few questions to the rest of the problems (for example, doing multiplication on addition problems and so forth). I quickly realized what must have happened because the mistake was so stupid and I knew this stuff cold: unfortunately, I had only been truly awake for the first few problems and the second page. The rest of the problems I completed without full conscious awareness during a microsleep, only to wake up when I turned the page. I was very upset, but I didn’t know how to explain what had happened to my teacher because it just seemed hard to prove and so I was stuck with a terrible grade that I had to pay for for the rest of the semester.

What I just related for you is an example of automatic behavior during a microsleep. Basically, my brain fell partly asleep while I was doing a monotonous task, however I didn’t realize that I was partly asleep and continued working, but without conscious thought.

Another example of automatic behavior during a microsleep is what used to happen to me if I was struggling to stay awake during a long lecture: I would partially fall asleep for a few minutes even though my eyes were open and though I continued to write. Then, I would look down and realize that what I had just written was complete jibberish – or my handwriting was so bad it was illegible. Not realizing I had fallen asleep, I had continued to “take notes,” until a few minutes later I was jolted awake by something as simple as a noise or my pen starting to fall out of my hand or what have you.

According to one government fact sheet on Narcolepsy, up to 4o% of patients with Narcolepsy experience such automatic behavior during such microsleeps. Usually an episode is very short, lasting only a number of seconds or a few minutes, and the person will generally not remember what they did during the microsleep.

Here is the remainder of what this website says about microsleeps (as the paragraph is not easy to find on the page):

“They (Narcoleptics) fall asleep for a few seconds while performing a task but continue carrying it through to completion without any apparent interruption. During these episodes, people are usually engaged in habitual, essentially "second nature" activities such as taking notes in class, typing, or driving. They cannot recall their actions, and their performance is almost always impaired during a microsleep. Their handwriting may, for example, degenerate into an illegible scrawl, or they may store items in bizarre locations and then forget where they placed them. If an episode occurs while driving, patients may get lost or have an accident.”

You can find some more examples of automatic behavior during microsleeps for Narcoleptics in the Other Symptoms of Narcolepsy section on another website. The wikipedia article is also useful, even though it is very short. I would recommend that you take a look at both of these if you have time, especially the one with the examples, as I didn’t even realize that some of the things they mentioned are related to microsleep.

This mainly used to happen to me in school during long lectures or math class when I was already struggling to stay awake.

Do you experience automatic behavior during microsleeps? Have you found any tricks that help with this?

P.S. I am proud to say that I have now completed more than 30 posts on this site! :-)