Friday, June 29, 2012

The Battle that is Caffeine

I'm too tired to write much. Caffeine can be of some use to people with narcolepsy (pwn) but it largely turns out to be more of a burden than anything else. Since it is summer, I have not sustained a good sleep schedule. All week I have been taking long naps in the afternoon. Yesterday I wasn't going to be home, so I couldn't nap. That idea turned into the idea to have 3 sodas at dinner. That turned into a 2am bed time. Now I'm exhausted, and I have a headache from the caffeine. I feel like I can't win today.

Tuesday, June 26, 2012

Lots going on!

This summer is my first as a teacher.  I decided to teach summer school.  Adjusting to the schedule is very difficult!

Last night I stayed up past 1am, and today I needed a 2.5 hour nap.  I need to fix this.  A good schedule and I'm all set!

But Today's good news is that I found out I will continue to teach at the same school next year!  They're doing many layoffs and it's a miracle I'll be working for another year!

Also, I am studying to take the final test for my Master's Degree, but I have no energy.  I'm not sleeping as much, but I am still tired all of the time!  Ugh!

Something scared me the other day and I noticed my knees went weak.  That's similar to cataplexy, but "normal" people can get symptoms like that in extreme circumstances too.

Monday, June 18, 2012

I'm Back... Lots to Tell!

(I'm highlighting the main themes of each section - read what you're interested in.  Stay awake if you can.)

I haven't written in a while.  There were a couple of things going on...

My sister was in town.  She loves to hang out late into the night.  I still had work even though her family was on vacation.  Bottom line - I used every free minute for sleep.

Also, last week was the last week of school.  As a teacher, that's a big deal.  It was the end of my first full year of teaching.  Considering I have IH and I'm finishing my Master's Degree, I'm pretty proud of myself.  My degree will be in Theology, so I will just say this - I didn't do it on my own.

***

But since it was the last week, it was a weird schedule.  I am beginning to realize how important sticking to a schedule is for me.  When I do that, I have enough energy to accomplish what I need, and can sleep when appropriate.  When my schedule is out of whack, I feel like I am back to square one even with the Nuvigil.

***

Meanwhile, I called my sleep doctor the other day.  I have been itchier since being on Nuvigil, and wasn't sure if that was an allergy concern.  Normally when I tell doctors that, they take me off the meds right away, declare me allergic and forbid me from ever taking it again.  I was worried, because there aren't very many options for IH treatment, so I put off telling him until I got worried about it.  He wants me to come off the Nuvigil for a week, and then try taking it again to see what happens.  I'm not sure when I could do that, because this summer is going to be chaotic to say the least (maybe I'll share that story sometime).

***

I also asked him if the Nuvigil is actually working.  I explained that I expected to have energy and be ready to get more things done that I couldn't because I have been sleeping so much.  But what I seem to be experiencing is more of what I can only describe as cortical awakeness (sorry, I was a psych major).  I am awake in the sense that I am not constantly fighting off sleep, but I am physically still exhausted.  So, most of what I've been catching up on is stuff that involves mental work, but not physical work.

His response is that there are two kinds of tiredness.  1. The kind where you fall asleep.  And 2.  The kind where you have no energy.  Nuvigil treats #1, but not #2.  So, yes, the meds are working.  He said that when I have my follow-up in a couple of months, we will discuss treatment goals and adjustment of meds.  He said he will probably increase my dose of Nuvigil.

***

Ok, last thing.  I had my first realization of sleep paralysis today (I am pretty sure)!  I was napping after work, when somehow I must have opened my eyes to see a tiny spot on the bed next to my face.  I was aware that the spot was there, but I didn't know exactly what it was.  In my imagination it was a tick - which would be really weird, because I hadn't been outside).  So, I tried to wake up and figure out for sure what it was so I could get rid of it, especially before it bit me.  But I could not wake myself up.  I couldn't even open my eyes completely to see what it was.  I continued to dream during the struggle to wake myself - of killing the bug, but still unable to wake up.  And the spot was right near my face!  Finally I managed to wake up, and look at the spot.  That was the point at which I had the longest delayed response I have ever had - I jumped up and shrieked a little.  Turned out it was just a fuzz.  But it was also the first time I was aware of having sleep paralysis.

Come to think of it, I have had things like that before.  Sometimes I need to wake up to use the restroom, but can't so I dream of it until I finally wake.  It happens most when I am sick with a stomach bug.  I will dream of going to get someone to help me, but I constantly become aware that I have still just been sleeping.  That is usually a cycle until I truely wake up.  Quite unpleasant.

Sunday, June 10, 2012

Social Life... What's That?

So, before I was diagnosed, but while I was working regular hours, I had very little social life.  All because I was sleeping.

And I thrive on being social.  I love my friends, and I really love meeting new, exciting people.  I love having adventures.  But I was too tired to do anything.  And I knew if I was tired, I might fall asleep while driving.  So, my social life quickly faded.

Now, I am able to be with my friends again.  On Saturday there was a big gathering that my friends were all attending.  Normally, Saturday is my sleep day - I work in the morning then sleep until Mass on Sunday.  I was tired, and I did take a nap, but the nap only lasted 2 hours and I was able to function completely after that.

This is not what I'm used to, but I am loving it!  I feel like I might be starting to get my life back.  (I'm a little afraid to admit it, because I'm afraid this won't last.)

Saturday, June 2, 2012

Caffeine

Today I realized that I haven't had a caffeinated beverage all week.  This is a breakthrough!

For the last few weeks I have been drinking copious amounts of soda due to an unusual occurrence of non-diet Coke in the faculty cafeteria.  Before that, I drank tea every chance I got.  This week was too hot for tea, and I don't drink coffee (maybe I'll tell that story soon).

So, I accidentally quit caffeine this week when they switched back to diet (I don't drink diet either - different story).  I did spend half the week on strong decongestants, but I seemed more tired on those days.

Maybe Nuvigil is helping.  I love those little moments when you suddenly realize your life got better right under your nose and you didn't even realize it was happening.