Update on me and a Happy Fourth of July!

Happy 4th of July to all the Americans out there! 

I wish I could be with you today as you barbecue, eat watermelon, go to parades and see the fireworks!  Sigh.  Not much going on for the holiday here in Berlin, probably because this is Germany. 

I know that I only have been writing posts on this blog once in a blue moon for quite some time now, but I wanted to post an update on my life, as it seems that a number of people are still reading this site.  (Funny, back when I used to post here often, I would get excited when my site would make the first two or three pages of google search for “narcolepsy blog.”  Now that I almost never post, I come up as the fifth result!  Lol.)

Currently, I am just staying at home trying to get my health issues under control, especially depression and migraines (although weight is also a big issue for me, but not one keeping me from working).  Starting in November, I had a three month internship with a non-profit that does conferences on international politics and culture, however, it was a big problem that I was missing 2-3 days each week because of migraines.  Because of this, I decided not to look for other work when the internship ended and just focus on getting rid of the migraines.  I am fortunate that I can stay at home without running into financial worries, as my husband has a job that pays very well.

The good news is that, since then, I have managed to reduce my migraines by about 50%, since I changed my diet a bit to resemble the low glycemic index treatment. 

Out of the blue, my previously unhelpful neurologist told me about the ketogenic diet, which is traditionally used to treat epilepsy in children, saying that it might help my migraines and even my weight issues and narcolepsy.  (Those of you who know something about migraines might remember that many medications used to treat epilepsy are also used to prevent migraines.)  (Thank you, God, for answering my prayers ).    I then discovered the low glycemic index treatment, which is a much more liberal version of the ketogenic diet, through my own research about the diet on the internet.

Since I started trying to follow this diet, I have gone from one migraine (with me lying sick in bed 2-3 days) every week to a bit less than two migraines per month.  That, and I have been able to completely stop doing the other migraine diet I was doing, as I found that I didn’t find that helpful when I was doing this thing.  I haven’t seen any change in terms of weight or my Narcolepsy, but I was trying this because of the migraines. 

Having said that, I haven’t yet managed to get anywhere near the intended restrictions of the diet (namely, 40-60 grams of carb per day and staying within the low glycemic index) since the first month.  Let’s just say, I cheat.  A LOT.  And yet, I have still managed to see a dramatic improvement!  Which makes me very happy.  I’ve now gone on two vacations where I didn’t lie in bed for at least one day with a migraine (amazing!). 

It is my hope that I will be able to start eating better and with less carbs very soon, and that perhaps once I do that my migraines will decrease even more.  In the first month that I did the diet, I followed it more strictly and only had one migraine, so it is my hope that I can see even more improvement in this in the future.

(I should probably mention that if you do reduce your carbs to the level recommended with this diet, you should regularly see a doctor to make sure you don’t have any nutritional deficiencies or other problems.)

In other news, we got two bunny rabbits at the end of April, which has been quite fun.  The black one is named April and the white one is named Snowflake, both females.  They love to cuddle and groom each other.  It’s very cute. (I will try to post pictures in the future…)

I had really been wanting a dog, however, considering  my migraines and living on the 4th floor with no backyard, I decided that rabbits would be a better choice.  As I have been struggling with depression for some years now, it has been nice to have some furry company in the apartment, especially as my husband often travels for work.

I hope that everyone is enjoying the summer and doing well!

I also wanted to repeat something I’ve previously offered on this site, namely that if anyone is in need of advice or just some emotional support in a difficult time, please feel free to contact me at nisfornarcolepsy@google.com and we can talk.  I know that it can be quite tough to have narcolepsy on top of whatever other issues one might have, and I would be happy to lend an ear (either by e-mail or even by telephone, as I have a plan where I can basically call the U.S. for free).

Just in case anyone has been secretly praying for a narcolepsy buddy – and not just a message board sort of buddy, but a real person –to talk with.  If you live in the U.S., ideally you would seek out someone in your area in the form of a narcolepsy support group, but I recognize that not everyone lives in the U.S. or has access to such a group.  Or perhaps you have other reasons.  Regardless, I just wanted to say that you shouldn’t feel badly about reaching out if you need help (it happens to everyone).

God loves you, and I believe that he has good things planned for you. 

Article: How long is the ideal nap?

Here is an interesting article from the BBC about the length of the ideal nap.  Most experts seem to say that between 20 and 30 minutes is ideal.

Enjoy!

Article on Narcolepsy on cnn.com

If you have a chance, you might want to check out this article on cnn.com about Narcolepsy.  It is written by a doctor and has a few interesting things to say.

http://pagingdrgupta.blogs.cnn.com/2011/02/08/get-some-sleep-daytime-sleep-attacks-narcolepsy/?iref=allsearch

Thoughts?

Love and God Bless,

Ellie

Thoughts on the Narcolepsy Network Conference

 

It’s that time of year, again. 

Pumpkin time?  Think about that Halloween party you may or may not have time?  (Is about one week’s notice too short?  I think not!)  Turn on the heat and bring out the sweaters time?

Nope.

Annual Narcolepsy Network Conference time!  Obviously.  lol.

Every fall, the Narcolepsy Network holds a weekend conference on Narcolepsy.  This year, it was from October 8-10 (I know, that means it already happened!).

At least, that’s the word on the street. 

It saddens me to admit it, but I’ve actually never been.  But I always get a bit excited about the fact that it is happening, and now I’m curious to hear all about it.

If I still lived in the US, I would certainly think about going.

Did anyone attend the recent conference or has attended in the past?  If you learned anything interesting, might you be able to share it with all of us who couldn’t go?

Thanks in advance!

I’ve always wanted to go, not so much to meet other Narcoleptics but in the hopes of getting new information that would be helpful or encouraging.  Although I suppose it would also be exciting and interesting to meet other Narcoleptics in person (I’ve only ever met two people and one dog with Narcolepsy, face to face).  And meeting other Narcoleptics would certainly give you the chance to learn things that might help you as well.

What do you think?

P.S.  Do I get an award for the shortest post EVER?  Normally I have to censor myself on length!  :-)

Fighting the 3 pm sleepiness

If you’re like me and you take two scheduled 20 to 25 minute naps each day (or at least they are supposed to be that short… I have trouble sticking to that these days if I don’t have something I need to do), you know that this is not an easy feat.

In fact, it’s kind of a science in and of itself, the art of figuring out “how am I going to fit in a nap when there is no easy block of time to do it in (and place, etc.).”

(Let me say it again, in case I haven’t already emphasized this enough: if you’re still struggling with alertness even after taking the best meds you can get, then I would suggest that you try taking naps like I do (consider it free advice from the Stanford Sleep Center, one of the world’s best sleep centers).  I assure you that this is the best advice I can give you.  If I had to pick medication or naps, I would pick naps.  Even when I was on Xyrem AND Concerta, I still desperately needed these naps to function like a normal human being.  And if on this blog I sound like a “normal” human being, it’s because of these naps.  Because without them, I couldn’t function on a decent level, if at all after noon. 

I’ll admit that it’s difficult to make the change: difficult to make it a habit, and difficult to train yourself to only sleep for 25 minutes, but you can do it if you put your mind to it.  And don’t tell me that you CAN’T fit it into your life, because I think that you probably can if you make it a top priority.  You would just have to start scheduling things around your naps, to the best of your ability.

I know, this sounds crazy.  It’s huge.  It’s difficult.  But I assure you that with some thought, it’s not as hard as you might think, provided that you are willing to be flexible about where you take your naps.  I can say this because I’ve been doing this for 17 years, rain or shine, work or school or conference or social outing.

I put “can’t” in capitals because I wanted to emphasis that while you might feel like you can’t, what’s really going on is that people choose not to.  I understand that you might choose not to do this; there are a million reasons why you might not want to do it or why you might not be able to because something else is a higher priority.  However, I do believe that if you make this a priority you can always find a way to make it work, you would just have to make it as important as brushing your teeth in the morning.

To me, the crazy idea is not doing what you need to do to control your Narcolepsy so you can live your life.)

(I might add that if anyone wants to start doing this nap thing and needs a mentor or someone to talk to, you need only ask.  Don’t be shy! :-)).

I apologize if you feel that I worded the above too strongly.  I have indeed heard about Narcoleptics who do fine without these naps.  It is also a free country, and no one (least of all, me) is going to force you to try taking scheduled short naps (just like no one is going to force you to take medication).  But I am also constantly hearing about Narcoleptics who have tried all the medications that are available but are still hopelessly tired, yet they haven’t tried taking scheduled naps.  To them, I would seriously suggest that they consider doing this nap thing.

Just think: it’s free, it doesn’t have side effects, you don’t need to pick it up at a pharmacy or get a prescription, you can do it while you’re pregnant, and it may just help you as much as any of the big fancy expensive prescriptions (Xyrem, anyone?) – or more.

I hear you; Taking medication is so much easier than doing this nap thing!  But personally, I care more about what works than what’s easy. 

But back to the problem of fitting in the naps. 

Normally I do a pretty good job of scheduling my life so that I am able to take my naps on time.  But occasionally, I run into situations in which it just isn’t going to work.  I either have to skip the nap or not do whatever it was I wanted to do at that time.

Given the choice, I would usually pick nap over anything else, unless I really don’t have a choice.  I really need to take my first nap by 12:30 and my second by 3:30 (although I really need it right at 3), or else I have to suffer being extremely tired (not to mention fighting microsleep and taking unintelligible notes, if I’m in a lecture or meeting style situation.  Sometimes I can delay my nap a little more without falling apart if I am in a very engaging situation). 

Having said that, I can delay my nap if I want to, it’s just torture and my performance is going to be much impeded.  That, and the main thing on my mind is going to be how much longer until I can sleep.

However, there are rare occasions when I decide that something is worth the torture of delaying my nap, even when that thing isn’t important. 

For example, sometimes you want to take a three hour digital photography course, but the only ones you’ve ever heard about always interfere with one of the two naps.  And so you’re left with the prospect of never finding a digital photography course you can go to, or you can suck it up and wait an hour for that 3 pm nap.

Which is exactly what I did a few Saturdays ago, except I also threw in the fact that the first nap was difficult to fit in.  You see, the course was from 12:50 pm to 4 pm, but I wanted to look at pianos with my husband before the course, which meant that my first nap would have to be squeezed in with a quick lunch at some restaurant (our solution: an uncomfortable 17 minute nap on a Burger King table, followed by a grilled chicken sandwich, and then, because we were running late, a taxi ride instead of public transit.)

Of course, having worked so hard to fit in my nap (which ended up being a bit too short because of time constraints), no one else showed up to the course so we just waited around.  Lol.  But what can you do, right?  How could I have known?

So it ended up being just me and the photographer in his studio/apartment, which was secretly a relief for me, because it meant that I had the courage to ask him if we could stop around 3 and have me take a nap on a table (I actually asked him when we still thought another girl was coming, and I was glad that I did.  I said I didn’t mind losing the 25 minutes of the course).

Anyways, things were going well until about 2:30 pm, when I looked down at my notes and realized that instead of having just written “compares color,” I had written “color compares.”  And in difficult to read writing. 

In other words, I was fighting microsleep.  My hand was still writing but my brain was only a little there.

I couldn’t help but think: this is what you get for only sleeping 17 minutes!  I really need my 23 or so.

Embarrassed, I told him that I was falling asleep, and could we take a break?  And to my relief, he was fine with it. 

I stood up and walked around the room a bit and he made me some tea.  And surprisingly, after 15 minutes or so I felt well enough to continue on.  However, in the end we didn’t stop for my 3 pm nap because I didn’t say anything, as I was interested in the material.  But the course ended up ending at 3:40 anyways because my digital camera’s battery had died (opps).

I came away from the course with a lot of new knowledge about photography, but also a few reminders about dealing with my Narcolepsy.  First, it’s okay to ask someone if you can do things a little differently so you can take a nap.  In fact, most of the time people are more than happy to accommodate you, especially if it doesn’t really inconvenience them (now that I think about it, I really shouldn’t have felt reluctant to ask about me sitting out for 25 minutes to nap, as this wouldn’t hurt the other students and the instructor would not be losing money or anything).  I’m not normally hesitant about asking people when it’s a social thing, but I’m more reluctant when it comes to courses.  Second, although it usually doesn’t help very much, sometimes it helps to walk around and have some tea when you find yourself falling asleep in a repetitive, passive situation (such as listening to someone else give a lesson).

I actually think drinking anything, especially something warm, is the most important thing, as I don’t find that caffeine makes me noticeably more alert (too bad, right?).  I used to use this trick to stay awake in lectures where I had a tendency to microsleep back in college.  I would make myself periodically drink something, and the mere act of doing something different from note taking would sometimes wake me up from starting to fall into a microsleep (or jolt me out of one).

Discussion question:  Do you take naps?  How long do you nap for and how often?  Have you tried this whole scheduled nap thing?

And just for fun:

(above image from ihasahotdog.com)

Easy dinners for those low energy nights

Lately I’ve been trying to get a handle on the whole food thing, namely trying to eat healthier food (but less calories) on a more regular schedule.

But I have to admit, these days the first thing that comes to mind when I think of “easy dinners” is Italian delivery or some kind of take out.  Which is bad, I know, especially for someone trying to lose weight.  But the thing is, I just don’t have much energy at the end of the day and I really don’t like cooking.  Cooking is draining for me (kind of like driving), it’s time consuming (even those “quick” meals!), and then there’s the mess it makes, which I need even more energy to clean up later.  Arggh.

So this week I’m trying to do things a little bit different. 

We’ll see how it goes. 

First, I’m trying to stop vowing to cook dinner every night (only to not do it and feel guilty) and instead just cook more often.  Second, I’m trying to come to peace with eating out and just focus on eating out at healthier places or adding a salad to a take out meal I eat at home.  It’s actually cheap to eat out here in Berlin, but I feel guilty about it nevertheless (I know my husband doesn’t feel guilty, and I’m trying to learn to be like him on this).  And third, I eventually want to get around to stocking up on things so that I can prepare something easy for those nights when I’m too lazy to go out and get special ingredients or get takeout (unfortunately most delivery food here isn’t the healthiest or the greatest).

Which brings me to the title of my post: I wanted to list some ideas for those nights when you want to (or have to) cook something at home for dinner but you really don’t have much energy to do it.  Unfortunately, I find that when I do cook, it’s generally better when I keep it simple and easy, otherwise I end up spending an eternity in the kitchen and then I get burned out and don’t want to cook at all the next night.

Easy dinner ideas:

1. store bought rotisserie chicken, garlic bread, and oven roasted veggies: I tried roasting some veggies last week or so and it is actually a lot quicker than you would think.  You just cut them up and pile them on a baking sheet with a little olive oil and throw them in the oven and they’re done in no time.  And if you’re really clever, you could make piles of different veggies on one sheet (next to each other but not mixed), and then you could use one roasted veggie for dinner for that night and another for another night.  I also noticed that cauliflower and broccoli are especially easy, since you only have to wash them and break them up (no cutting!). 
2. chicken (quick cooking, small slices or already cooked or store bought roast chicken) and roast or frozen veggies over pasta with canned tomato sauce:  If you want to use frozen veggies, you can cheat by throwing them in with the pasta (I especially like to do this with broccoli).  Another way to cheat (I like cheating when it comes to cooking! lol) is you can throw the pasta sauce over the pasta without heating it up (I read this somewhere and I do it sometimes myself.  The pasta is hot enough that it warms the sauce).  Or you could just do this and then throw the pasta bowl in the micro for a short time if it would make you feel better.
3. chicken or beef fajitas: if you use pre-sliced chicken or beef, then the main work here is cooking it, assuming that you are using a simple or pre-made spice mix.  I also would throw in an onion and some bell peppers, but you could also use frozen bell peppers (I haven’t tried this, but I think that they would heat up quickly).  Then you just have to find some tortillas, salsa, lettuce, and whatever else you want (cheese, sour cream, tomatoes, etc.).  I’ve been wanting to try this in the slow cooker: supposedly this is easy to do in the slow cooker, and then you could use frozen chicken and frozen bell peppers and you wouldn’t even have to sit around and watch the pan!  (hmmm, do I sound lazy? lol) 
4. pre-made tortellini with canned tomato sauce:  Ideally you would add garlic bread and a salad, but you could also add some frozen or fresh veggies (for example, mushrooms) to the pasta water as an alternative way of adding veggies.  This meal is awesome because it is easy and quick but also looks like it is a lot of work when it isn’t.  Also, you can again use the sauce trick!
5. meatloaf (I like the recipe that used to be on the back of the Quaker Oats container, however I use ketchup instead of tomato juice plus a little water. That’s how my mom used to make it):  now, when I make meatloaf I normally also make mashed potatoes and cooked carrots, but when you add mashed potatoes it is a lot more work (and a lot more mess and energy).  However, there are less perfectionist ways to do this dinner.  The meatloaf is actually pretty quick and easy to make in and of itself (at least the prep is quick.  you still have to cook it).  One way would be to serve meatloaf with garlic bread (something that to me seems a lot easier than pasta, which has to be watched and stirred and so forth) and salad or roasted veggies (or micro waved fresh or frozen veggies, which is also really easy).  Another would to make meatloaf sandwiches.  You could also serve it with leftover rice or baked potatoes…
6. hamburgers:  this is an obvious easy one; it’s just a matter of having the ingredients on hand.  You could use English muffins (or, let’s be honest, even regular bread) instead of hamburger buns if you don’t have them, although lettuce, tomato and ketchup are kind of necessities.  You could add frozen fries or chips (even easier) if you wanted.  And/or if you are being especially good you could add a green salad or some mini carrots/celery/snack veggies and Ranch dressing.
7. grilled cheese sandwiches and canned soup:  this used to be one of my mom’s quick meals.  I like grilled cheese with tuna fish but my husband likes grilled cheese with ham and canned pineapple (and ketchup) (I know, it sounds weird but it’s actually good).  But you could also do grilled tuna (without the cheese).
8. leftover plain pasta heated up in a skillet with a few eggs and sliced ham:  this is a dish my husband really likes.  I assume it must be something his mom does with leftovers, as he was the one who showed it to me.  You serve it with ketchup.  I would add a salad to get some veggies in.
9. chili or taco soup:  this is especially easy if you use a crockpot.  I serve this with sour cream and tortilla chips (and sometimes shredded cheese).  This would be even easier if you used a vegetarian version (I’ve been meaning to try one).  Ideally I would serve this with cornbread, but I never seem to get around to making it (we don’t have those fast mixes here in Germany :-().
10. breakfast for dinner:  this is another one my mom used to do, however my husband doesn’t think this is an acceptable dinner so I don’t make this one.  You could either do scrambled eggs with sausage or bacon and toast, omelets with toast, or french toast. Or you could get fancier and do pancakes.  I think breakfast for dinner is kind of fun, so that helps.  And you could add some sliced fruit.
11. chinese stirfry using frozen chinese vegetable mix:  as an emergency measure, you could do a stirfry with sliced chicken or beef or shrimp and a purchased frozen chinese vegetable stirfry mix.  You could add any canned Chinese veggies you have as well.  And then you could serve it with cooked chinese noodles or rice, with some soy sauce.  If you wanted, you could purchase the rice or noodles from a Chinese place, if that would save you time and energy.  Ideally you’d make a more complicated stir fry sauce, but it doesn’t have to be so difficult.
12. turkey hot dogs on buns with cooked white beans:  hot dogs are good because they can be heated quickly in the microwave if you are feeling lazy.  You could add chips, pickles, and mini carrots with Ranch dip if you wanted.
13. purchased pre-made turkey meatballs with tomato sauce and pasta: I feel Jamie Oliver’s wrath upon me (for talking about so many processed foods), but this is one of my quick meals.  You could add some frozen or fresh mushrooms to the pasta and/or add a salad.  You could also add garlic bread (I like the pre-made ones).
14. homemade pizza, using pre-made crust or pre-made dough (and okay, yes, frozen pizza is an obvious one): I’ve yet to try this,but I’ve been meaning to.  I’ve also been wanting to try making my own pizza dough, which is supposedly very easy (it would be something fun to try if you have kids!).  And if you’re being extra good, add some cut up veggies with dressing if the pizza doesn’t already have a bunch of veggies on it.

I have more ideas, but I think that’s enough for now.

Discussion question:  What do you make when you really don’t want to cook?

The joys of my iphone’s GPS

 

I got an iphone early this year, and I absolutely love it. 

You see… now I never get lost anymore! :-)

My husband can vouch for me: I have a terrible sense of direction. 

I’m not sure exactly what skill navigation draws on, but whatever it is it’s not something I’m very strong in (you remember those “maps skills” handouts where you had to pencil in the shortest route from the School to the Firehouse?  Yeah, A student that I was, I never did very well on these…). 

In the US I used to use google maps to find places, which usually worked pretty well, but here in Berlin that doesn’t work because I use public transit to get everywhere (we don’t have a car).  So although I always would know which station to get off at, I would often times have a terrible time figuring out which way to walk out of a station (there are two exits, which doesn’t help) to find where I am going.  Although a map printout was some help, unfortunately the subway stations are marked on maps with one icon for two exits which are about a half block apart, so it can be difficult to figure out exactly where you come out on the street versus what you are seeing on the map…

I actually started leaving myself a significant amount of time to get lost if I had to be somewhere I’d never been because I would have trouble finding things so frequently.  lol.  Needless to say, I felt a bit silly.

However, now that I have an iphone, I just use the google maps function with GPS and I never have a problem finding things anymore!  It is amazing!

But what, you ask, does this have to do with Narcolepsy?  Which is a good question.

Now, I’m not about to blame my terrible sense of direction and lack of decent navigation skills on Narcolepsy… Although there are some things that many (but not all) Narcoleptics have in common above and beyond the symptoms of the disorder, I don’t think this is one of them. 

However, I do think that sometimes Narcolepsy and how tired I am does influence my navigation skills and in these situations it saves me a lot of frustration, worry, energy, and time having access to GPS.

When you are a bit tired (and especially when you are really tired), it can be easy to make stupid mistakes (like missing a street sign or turning the way you usually turn to go home without thinking about it), and it can be very comforting to be able to look up where you are and how to get where you want to go in case you ever find yourself completely, hopelessly lost.  Me, I also use the maps function to prevent myself from ever getting to such a point to begin with. 

I don’t mean to suggest that all Narcoleptics should get an iphone, but if getting lost is a big problem for you, you might think about purchasing a device with GPS.  If I remember correctly, Apple also makes a cheaper device called the iTouch, which has many of the features of an iphone (including GPS), but without the phone.  And of course, I am sure that there are many other companies that make smart phones that have a GPS feature.  (The only problem is that smartphones are generally more expensive and then you have to pay for the data plan).

Discussion question: do you also have a problem with getting lost?  Do you use a device with GPS?

Happy Tuesday!