Just stuff floating around in my dreamy head.

Wow, I have been feeling like it has been a year since I posted on here, but it's really only been a couple of months.  Excuses, excuses... but I miss writing, so here I am.

One of the most difficult things to deal with (in terms of Narcolepsy) is that sometimes people aren't really interested in understanding what this is all about.  They just want me to be like them.  I guess because the experience of feeling tired is a common one, people think it is similar.

But the thing is, if people learned more about Narcolepsy, it would make my life a bit easier.  If they learned that I have been developing strategies to accomplish what I need to do, then they could work with me instead of just figuring I would be too tired to do something.  This is difficult to write, because I'm trying to be too vague to spare feelings, on the off-chance that someone important to me finds my blog (not information I freely distribute).  Let me be more specific.  (Babe, if you're reading this, please read with an open mind and heart.  I am just writing my experiences, because it could help someone else realize they're not alone.)

I love him so much, and I know he meant well, but sometimes my groom-to-be drives me nuts.  One day he said that he ignores my Narcolepsy.  He does have a tendency to ignore things that he doesn't know what to do with.  I have a tendency to exaggerate, so I guess I don't make it easy for him to understand what I'm going through.  I think he thought that Narcolepsy was a hopeless sentence to sleeping your life away.  But the thing is, if he tried to learn about how I am coping with Narcolepsy, then things would be better.

So, for example, when I get up in the morning, I need to take meds pretty much right away to be able to have a relatively productive day.  And the meds only work if I have gotten an appropriate amount of sleep.  The catch is that I must stay relatively active, or I crash.  So, I go to work, stay alert all day, have a short drive to his apartment and immediately, I still have the energy to do things.  He likes to sit and relax after work (he's a teacher too).  So, if I relax with him, I get really tired really fast.  Once he has rested, he's ready to do something productive or fun, but I am way too tired to do anything.

If he stopped ignoring my Narcolepsy (which he has done), then he could let me know that he wants to do something a little later.  I will know that I can't sit and relax because I will get tired.  So, I can do something to keep my energy up.  I can play with his mini-lop bunny (who just turned 1 and is extremely adorable), clean up around the apartment, work on wedding stuff, go shopping, or whatever.  Then, by the time he is ready to do something, I am still going and not too tired.  Now that he understands this, life is a little better.  I think I will need to remind him of this trick from time-to-time, but I am glad we are working on this now.

I don't even think I realized that keeping busy was one of my coping strategies until I had this talk with him.  I wonder what else I do to stay awake (besides eat and drink coffee and soda).

Thinking about it a little more, maybe he thought I was using Narcolepsy as an excuse to avoid things.  I guess it might be difficult to understand the difference between excuses and explanations sometimes.  I am not even sure I always understand it myself.

Like, in the same scenario as above, maybe he wanted to do something and I said that I was too tired.  Maybe after a while of hearing me say that I was too tired to do things, he may have asked why I was so tired, or implied in some way that I'm tired too often - more to vent frustration about being unable to do stuff than anything else.  My response of "I have Narcolepsy" may sound to him like I'm excusing my behavior away.  But really, I am just trying to explain how things are different for me.  I'm tired a lot... a whole lot.  It doesn't have to be the end of all fun.  But it does make me different from most people.  When I say, "I have Narcolepsy," I just want you to be understanding and patient with me.  I am not saying that you should give up hope of me ever doing anything again.

Ok, sorry.  I was thinking "out loud."  Not sure if any of that made any sense to anyone but me.  Hope I didn't hurt the feelings of my super-supportive fiance. When we communicate well, we are the perfect team.  Done rambling for now.

I saw this on Pinterest today, and it made me laugh.  The only time anyone ever wants to reach me is during a nap.  That could be because I nap so frequently.

But it is weird that people don't seem to understand.  Some people will send me a text, and if I don't respond right away, they become more persistent.  Seriously, most things can wait a couple of hours.  I will not usually respond during a nap.

However, I can honestly say that I have been napping significantly less these days and I have been ok.  It is summer, and I have been so much busier than ever.  But it's a fun busy...

If you have followed my blog (I don't expect that you have), you may recall that last summer, I found this amazing guy.  This summer, he purposed and I said yes!

Two nights ago, I stayed up until 4:30 AM working on a wedding project, woke up at 10:00 the next morning ready to go.  Adrenaline does weird things!  I am definitely tired, but once I get going, there is so much to do - and so much that I enjoy doing - that I don't stop long enough to fall asleep.

But tomorrow, I go back to teaching.  Overwhelmed as usual.  No classroom to call my own, so I have to bounce between others all day.  We will see how it goes.

The wedding is immediately after this school year.  Perhaps this wedding energy can carry me all the way through the year!  One can hope, right?

At least I got one of the things I always hoped for.  <3

Soma

Sorry for the "Brave New World" reference, but since the word also refers to sleep, I thought it was a good title for today's post.

If you have never read Huxley's novel, you may not know that "Soma" is the fictional drug that makes everything better with no side effects. 

Every time I talk about taking a nap or being tired, people ask me, "Doesn't your medicine work?" And every time I explain, "Yes, but it's not perfect. It doesn't cure Narcolepsy, it just helps a lot. Plus, I still get tired like everybody else." 

I am not sure why people expect me to be instantly "normal" as soon as I take a pill. No drug works perfectly. Even when I read BNW in high school, that was my first criticism of the book. No, I can't imagine a pill that fixes anything perfectly. That's part of the reason that most medicines need to be taken repeatedly.

Not to mention the fact that Narcolepsy and hypersomnia are not well-understood. Scientists don't even know what causes them - especially in my case, that's why my extreme sleepiness is called "idiopathic." Why do people expect that my life would be perfect with this pill?

I know this is probably not true, but sometimes I feel like people say things like that because they think it's not a real problem. Like they think its a made-up disorder or that I am just lazy. Perhaps the real answer is that they don't know how intense these disorders are. Maybe since they have never experienced it, they have no way to know exactly how strong the symptoms are.

In any case, the diagnoses, treatment, and continuous education on the subject have definitely changed my life for the better. I used to come home from work at 4:00pm, fall asleep, wake up around 8:00 or 10:00 for 2 hours, go back to sleep for the night, and have a great deal of trouble waking up for work before 6:30 am. Every single day was like this. Except the weekends, then I would replace working with more sleep. I knew I was sleeping my life away and there was nothing I could do about it. Now I sleep 8 or so hours per night, nap a few times a week for about 2 hours each, and otherwise actually live my life. This result is nothing shy of a miracle to me. 

So, I may not be cured, but at least I am better enough to actually be living my life! I can now have an active social life, the quality of my work is improving, and I can actually see the floor of my room. That's good enough for me!

I'm tired tomorrow...

Last Friday I was asked to help someone out on the following Saturday. I responded with, "No, I'm tired." 

The person gave me a funny look - "Get some rest tonight, and you can help tomorrow." To which I responded, "I'm tired tomorrow."

To most people, "I'm tired tomorrow" makes absolutely no sense. But to me, it made perfect sense! 

I am tired every day - that's no surprise. Most days I make it through just fine. Sometimes I get so tired that my brain seems to be a little glitchy. I will feel like I'm dreaming, become clumsy and forgetful... Usually I can prevent this by going to sleep at a decent hour, but sometimes even that doesn't help.

Occasionally stress will cause me to be overly tired. Most people recover from extreme tiredness with an ordinary good night's sleep. It's not the same for me. Every so often, I can feel the kind of tiredness coming on that requires an entire day (24 hours) of rest - most of which is sleep. Without that, the extreme tiredness persists endlessly, making me cranky, weepy, and altogether a mess.

I am starting to become more aware of the feeling that indicates I should sleep a day away and "reset". So feeling like "I am tired tomorrow" is no joke. 

The school year just ended, and this is exactly how I feel. Luckily, it is Saturday, so I plan to take a nap lasting at least 4 hours. I am hopeful that will help! Otherwise, I am definitely tired tomorrow.

Fun with Narcolepsy! (Quote Edition)

Yesterday, I was decorating my bedroom with this really adorable art that I found (DeGrazia).  I was using frame-type things that were like those vinyl decals that stick to the wall.  Pretty cool (butchandharold.com - I don't work for them, they don't pay me, but I really liked their sticker frames).

Anyway, since one of the vinyl stickers has dry-erase qualities, I decided to write a quote over the bed:

"The best way to make your dreams come true is to wake up."
-Paul Valéry

I know that might mean something different to people without sleep sidorders, but to me, it encourages me to get out of bed when all I want to do is sleep.

That's the only quote I have so far.  Anyone else have inspirtional quotes for those of us who are extra-sleepy?

(Blogger Side-Note)

I just discovered that I don't always receive an email when people write comments.  I apologize for my extreme delay in responding to your comments.  Now that I know, I will have to check with some regularity, which is a challenge, because my iPhone doesn't get along well with comments.

Also, Please forgive me if I missed a comment that you wrote.  Hopefully that won't happen anymore.  Thanks for your patience!

The All-Nighter...

All-nighters are different for those of us who have sleep disorders.  All through college, I wondered why I was the only person I knew who had never "pulled an all-nighter."  I could never stay up for an entire night studying.  As a matter of fact, my roommate used to joke about my studying consisting of opening up my books and falling asleep instantly.

Surprisingly, this wasn't far from the truth.  Reading is one of the easiest ways for me to fall asleep.  I have found that if I have insomnia (which is torture for people with narcolepsy), all I have to do is pick up a book, and by the third page, I can't keep my eyes open.

Unfortunately, this poses some problems for a student.  If my automatic response to reading is falling asleep, studying becomes nearly impossible.  When I was working on my Master's degree (which I graduated with officially last week), I tried everything to read those long books originally written in another language, translated into English poorly.  I would spend all day at the school's library - far away from my bed.  I would go somewhere where I knew the AC was way too cold.  Or I'd have soda and snacks with me, just to have the stimulation to keep me awake.  It didn't usually work.  I almost always fell asleep anyway - I'd find the couch in the library, give up, and snuggle into my sweatshirt, or even fall asleep sitting at the desk with my face on the textbook.  Back then, I had not been diagnosed, so I didn't know what made me different from everyone else.  I just thought I was weak or lazy.

Anyway, it occurred to me the other day that I have pulled all-nighters, but when you have a sleep disorder, sometimes it takes a different shape.  I am now a teacher, and I stayed up until 1:00am grading papers when I had to get up at 6:00am the next day.  For me, this is an all-nighter.  Normally, if I am up until 11:00pm, I am exhausted and non-functional the next day.  Staying up until 1:00 made me practically delerious.  For me, that was an all-nighter.  For most people, they wouldn't think twice about staying up that late once in a while.

Long breaks - no more being sorry.

I've decided that I am going to stop feeling bad about taking long breaks from posting.

The fact is that when you have a narcolepsy-type sleep disorder, you sometimes fall behind on things.  If this blog was the only thing I fell behind on, I could live with that.

Luckily, since I was diagnosed, I have been figuring out how to get more done, and still sleep as needed.  Sometimes it works, sometimes it doesn't.

Anyway, I have  topic or two floating around in my head.  I will see if I can squeeze in a much-needed post soon.

For now, prayers for those in Boston.

My description of the effect of Nuvigil

I had a follow-up with my doctor recently, and he asked me how I was doing with my new medicine.  Here's what I said:

I feel like Nuvigil doesn't keep me awake or give me more energy.  It just makes it possible to fight sleep when I ordinarily would be unable to.  Like, if I am driving for 15 minutes, I might feel the same amount of sleepy as I always do, but now I can just decide it is not a good idea to fall asleep while driving, and it happens.  Before, I would have to pull out all of the tricks - opening windows, turning up the radio, drinking soda, eating something...  It is an extremely subtle difference, so subtle that it is difficult to be certain there is truly a difference at all.

My doctor said this was the most accurate description he had heard of this drug's effect.

It is weird to think that I am taking a medicine with this purpose - to give me the option of whether I fall asleep or not.

"Well, I guess the Nuvigil works," she yawned.

Just about every day since I was diagnosed with IH, I have taken Nuvigil.  My doctor said it would help.  It has been the better part of a year, and I have been wondering exactly how much it is helping.

Well, I am a teacher.  It is an exhausting job, especially since I am new to teaching, and have no background in it other than my area of expertise.  When I first started, all I did was teach and sleep.  These days, I teach, do things, then sleep - more like people without narcolepsy or IH.  But I do take naps occasionally, and if I do not get enough sleep, I will still fall asleep throughout the day.  So, I was starting to really wonder what kind of difference the medicine was making.

One day, I forgot to take my Nuvigil before going to work.  Luckily, this was after I started drinking coffee.  So, throughout my day, I had 3 cups of black coffee, knowing I would be tired that day.  I figured 3 cups would be equivalent to the meds (in a very non-scientific way).  So, I got home from work that day, and I fell asleep on the couch napping for a couple of hours.  That was fine, I figured it was par for the course having missed my dose.  Here is where I realized how much different my life had been before I started on the medicine.

Only a couple of hours after my long nap, while fully dressed still in my work clothes, I fell asleep for the night - it was 8:30 pm.  I couldn't even wake myself up long enough to change for bed.  Then when it was time to get up for work the next day, I had a very hard time (which is still typical).

I felt as though I had completely missed a day.  It was a little bit of a shock to remember what my life had been like before my diagnosis.  But one thing I realized is that I am very thankful drugs like this exist!  Even though I am still tired and I still nap a whole lot, the meds are actually helping.  Subtle, but life-changing!

Attribution Error

I think I understand why my doctor doesn't want me on stimulants.  Now, I'm no doctor, but I did study psychology in my undergrad.  What am I qualified to do?  Nothing, but it was fun.  Anyway, I always remembered reading in my studies about the attribution error (I'm pretty sure that's what it was called - correct me if I'm wrong).

Basically, here's the idea: if you give someone a stimulant, and tell them that you're giving them a stimulant, when they feel their heart racing, they will say, "the stimulant you gave me is making my heart race."  But if you give them a stimulant without telling them that's what you're doing, they may mistakenly attribute their racing heart for anxiety, anger, or some other emotion, when really all that is happening is that they've been given a drug that alters heart rate.  They will then look for the reason that they are experiencing the emotion, and blame it on whatever they decide is the cause.

I have been wondering (in my super-unqualified mind) whether I sometimes experience this with caffeine.  Sometimes I will consume caffeine in some way and later I will be very nervous about something - more than usual.

This morning I experienced this in a fun way.  I was exhausted, so I chugged a soda.  A while later I found myself thinking, "Man!  I'm really excited for the nap I will be taking this afternoon!"  This was likely a strange combination of the caffeine and the exhaustion.  But I really felt excited!  I figured the excitement must be about what was on my mind, which - of course - was the nap I planned to take later.

The nap was excellent, by the way!