Tuesday, August 12, 2014

Quirky ways I stay awake

From time to time, even people with no sleep disorder at all find themselves too tired.

Me too.

Obviously, the most important trick is to get enough sleep.  If you don't, you will be tired.  If you're too tired and need to drive, take a nap.

Still sometimes that is difficult.  Here are a couple of things I do.  They work for me - might not work for you so try them at home first, never while driving.

I like drinking soda - even non-caffeinated soda helps.  It's about waking up the senses.

Speaking of that, I just put a few packs of pop rocks in my car.  :)

I'm also planning to put one of those head massager things in my car.  The other day I realized that it gives me goose bumps - that means it's stimulating.

Chewing an interesting flavor of gum.

Cold and loud are classics.  But they're not my favorite.

I listen to podcasts on topics that really interest me (usually astronomy, or at least some kind of science).

I've read other people using saline nasal spray (which one of my doctors suggests for regular use anyway - always consult your doctor first!  I am not a doctor and I never advise anything medically.)

How do you keep yourself alert when it is difficult?

New Family (I'll put the highlights in bold)

I'm married now!  I honestly never thought that would happen!  I'm in my mid-thirties, so I thought my chances of finding a good one were too slim.  Luckily I was wrong!  :)

Our wedding was a little over a month ago, and it was perfect!  For about a year, we planned very carefully every detail of our wedding day (and most of the details worked perfectly - which is something I rarely hear from brides!).  We didn't have a wedding planner, our budget was tiny for a wedding, and our families are huge.  There was a whole lot of work to get done, and by some miracle, we did it!

Alright, I'm married.  What's next?  What do you think might be next?  Well, these things can never really be planned, right?  We're hoping to start a family.  I am aware that I am older than most new brides, and I know full well all of the risks that go along with that, so I am being very careful to ensure the best results.

But what about having a family and being a person with Narcolepsy?  Here is what I know:
-There is no Narcolepsy medicine that is Category A (The safest category of drugs to take while pregnant/nursing.)
-There may or may not even be a Category B drug for Narcolepsy (it depends on who you ask).
-It is often dangerous to drive as a person with Narcolepsy while it is untreated.
-Caffeine has demonstrated negative effects during pregnancy

For me, the decision was not the most difficult in the world, because I was living undiagnosed for over thirty years before being treated.  I figured I'd try coming off of everything I was taking right after the wedding.  More on that in a sec.

While I was trying to research what other people had done, I ran into a LOT of other people's opinions.  Some of these opinions were very harsh.  Some people basically asked how dare I inquire about taking any medication while pregnant.  Well, here's how I dared:  I had no idea whether it was harmful or not (to be perfectly honest, for some drugs, science doesn't know that either).  If I didn't ask, how could I learn?  I was a bit shocked to find such harsh words of judgement coming in my direction when all I was doing was asking - researching ahead of time so I could make an informed decision!  So, to those people who ask how I dare even ask such a question, I respond, "How dare you judge someone who is responsibly researching in order to make the best decision?"

The other thing people said was that I simply should abandon my dreams of ever being a mother.  The first basis for this argument was that whether or not I was medicated, I was still putting myself and any potential children in danger.  Keep in mind, these internet strangers have no idea how severe or mild my symptoms are.  Everyone is different.  The second basis for this argument is the one I find most upsetting.  They said that it would be so much more difficult for me to have a child than a person without Narcolepsy because of the exhaustion.

How ridiculous!  Seriously!  What if people really acted this way?  What if people who have a disability, or even just a struggle of some sort just said, "Well, it is difficult for the healthiest, most 'perfect' person, so it must be impossible for me!"  If that was the case, we wouldn't have Mozart's music.  FDR would never have become President of the USA.  Stephen Hawking would be a nobody like me.  And I would lay in bed, sleeping my life away.  Honestly people.  Do you even think before you respond?

So, that is not the type of person I am.  I am responsible, intelligent, and most of all, I am the embodiment of perseverance.  If I can live my whole life to this point without anyone noticing that I had Narcolepsy, than I can do anything.  So here's the plan:

So, naturally, I spoke with all of my doctors before making any changes, about 2 months before the wedding.  I am not a doctor, so I NEVER recommend starting or stopping any medication without consulting the proper doctor first.  We all decided I'd come off of every medication I take under careful supervision of my general doctor and all of my specialists.  This works for me because I am a teacher and it is summer.  If I sleep all day, there aren't any harsh consequences.  We are currently aiming to achieve pregnancy after the summer, God willing.  That way I can see how things go for a few weeks.  Then I will discuss with my doctors how these things went and the best plan going forward into the school year.

Here's the point.  If you have a sleep disorder - or any disorder/disability/struggle for that matter - please be who you are and be that well.  You can truly do things that other people can do.  Do not let anyone tell you that you can't.  You know what you are capable of.  No one else knows that the way you do.  And, please do not tear each other down.  Do not suggest that another person should not do what they know they can.  This is a rare disorder - we need to stick together because there aren't many people out there who understand us the way we do.  Only use your words to kindly support one another.  It will really go a long way.

Saturday, December 14, 2013

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.

Monday, September 2, 2013

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

Friday, June 21, 2013


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!

Saturday, June 15, 2013

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.

Saturday, June 1, 2013

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?