Here I come, I wanna write, what better place to start!?
Here I come, I wanna write, what better place to start!?
Why do I have even more trouble with my schedule in the cold? It seems for a couple of weeks now, I have been up all night and sleep all day. If I want it to be opposite, meds are definitly involved. I only take my adderall if I get it before 11, and still my regular 2 benadryl does not always work. Not sure if this is related to the cold, possibly seasonal affective disorder? Whatever, I want to move someplace warm!
Yes, some may say I am lazy, I prefer something along the lines of “waking challenged” This of course is only a problem in the morning. Unless I take A LOT of medication, I just want to sleep! My normal morning is getting up at 8 to drive son to school, back home to take 20-30mg of adderall and watch TV while fighting (or not) to stay awake. At least in the morning my little one seems to be a little sluggish which is a blessing to me! Unless it is Sunday, my sleep day. Now, I love to sleep, but I do feel as if I’ve missed something when I sleep until 5pm. Ron will let me sleep all day, because of course I don’t get up to take my meds, so I’m out. Maybe this feeling of missing something is an idea that is pounded into our heads at a young age. My dad still tells me I am sleeping my life away, my first reaction to that is a peaceful feeling of yes, than I turn to that guilt of having “missed” something. How can I really be missing anything when I am having such a great time asleep? I am starting to notice though that these long sleep sessions tend to get more emotionally disturbing the longer they get. This past Sunday for example, I got up around noon to go to the bathroom, went back to bed till 5pm. In these last hours of sleeping is when the dreams start to go down the unhappy route. This is usually the reason I wish I hadn’t slept so long, otherwise I’d be good! Well, fellow Narcoleptic’s, my attention is waning, as I’m sure is your’s…..
I wanted to talk about one of the more difficutlt issues I have with my Narcolepsy, not being able to tell what was a dream and what “really” happened. I have heard this described as Hypnagogic Hallucinations, which is common with N, but I question this. I have heard the hypnagogic term applied to different symptoms of Narcolepsy, it seems a bit subjective. I understand these HH’s as a brief sleep that happens during waking hours. I was recently asking about my sleep study results at the neurologist. I described how I clearly recall lying awake for ten minutes, but the results show me falling asleep within three minutes. The Doctor called that HH. I do not agree. Anyway, back to the subject at hand, reality. My point with the note on HH is that I do not attribute my disconnect from reality to this.
I remember as a small child having nightmares often, sometimes terrifying. My first memory of a dream was a bigfoot type monster walking near the woods at my Grandmother’s home. I was around four years old. I don’t remember much of the dream, but I remember the terror, and it has stayed in my memory as fresh as any reality. I have learned to deal with the “scary dreams” better, but have not found a way to correctly distinguish something from a dream and reality. These are almost always inconsequential minor things, but cause me great confusion. What usually happens is this: I am doing some random task like straightening up the boys closet, I clearly remember setting certain clothes on the dresser, but they are not there. I will stand for a minute and think, usually look around, and often just become confused. This happens all the time.
Often times it will involve a conversation, that apparently was a dream. I have become so accustomed (and thankfully so has he) to asking my boyfriend, Ron, if something really happened, that I’m not sure what I would do without him! One time that was particularly terrifying was a day I woke up and remembered my dad having a heart attack, I immediately had an anxiety attack and ended up calling him because I was so worried it really happened. It is so hard to start the day with that terrible feeling, I always feel it so strongly that I often become upset. Most people would just say “whoa, what a bad dream”.
I decided to write about this now because I have been feeling this disconnect more lately. After time, I often forget all about the specific incidents because it happens so often. These symptoms are issues us Narcoleptics need to talk about, and find hope and answers in each other. A doctor can never really know what it is like, unless they have it (doubtful). I often feel more like an interesting specimen to them. I need some real life help here, not medicalese or the same old B.S.!
Lets spread the word!
Yah, so I see that weekends could become a problem with trying to keep up on this blog. I often find myself not taking my medicine on the weekends, then I can sleep in, sleep all day, and go to bed early. Ahhhh, I love the weekends. My dad always says I am going to sleep my life away, well so be it. I really enjoy sleeping, besides reading it’s my favorite thing to do. But this weekend was a little rough, drinking always does that to me. I only drink on occasion, and rarely more than a couple. Friday I had way more than a couple. Of course this has nothing to do with my Narcolepsy, but it does wreak havoc on my stomach. I always spend the next whole day recuperating, which I guess adds to the overall sleepiness. I would get to sleep more often, but my three-year old son grew out of naps and has enough energy for about five adults. So of course it waits until Monday night to write. I also need to put my outline down for the book I plan to write. Hoping to have some personal experiences along with practical knowledge to help my fellow sufferers. Well, you know, I am very tired…. so I am going to bed. Again.
So I wanted to make sure I let everyone in on my other conditions as well. Of course dealing with one usually causes some sort of problem with another. Narcolepsy was the first diagnoses I received (I feel like these should be in frames on my wall like degrees), along the way I have picked up some others. I think the most problematic one besides the big N is my chronic back pain. The beginning of the pain was fifteen years ago, and quickly got worse. By 2005, I was I was unable to work anymore, taking morphine everyday to get by. I currently take no pain meds besides Medical Marijuana which I have been using for over a year. This along with regular epidural injections has made life much easier and more enjoyable for me. I was also diagnosed with Irritable Bowel Syndrome, which comes and goes, recently hanging around too much. Anxiety disorder came along more recently, about six years ago. I currently only take 40 mg of Lexapro a day and 20 mg of Adderall up to 3 times a day. Thats it! This is in stark contrast to two years ago, when I needed a HUGE pill case to divvy up the 12 or so different meds I was taking everyday.
I have seen that all of these disorders can affect me at different times, or sometimes all at once. Though I have been through periods in my life where I havent taken medication for my Narcolepsy, it is always there. This is the one of my “problems” that’s always in the back of my mind. This is the problem that can cause the most upheaval in my life. If my back hurts sooo bad I can’t move, I can still function through other people, I can even keep an eye on my little one. On the other hand, having no medication at this time in my life can cause near disaster. In 2010, just before christmas break for schools, I ran out. Well, I didn’t exactly run out, but that is a whole different story. So, for a couple of weeks, no meds! My 10-year-old son missed around 9 days of school, I couldn’t be left home with the baby! I couldn’t stay awake for anything or anyone. This began to seriously affect my mental health, which makes everything much worse (at least in my mind). I look back on that time with some worry, with all of this news of the adderall shortage. Which is something that angers me to no end, why do I have to compete with people who need this stuff to concentrate? I need it to live (basically). That is a whole different rant I will save for another time.
Just wanted you to know some of what I deal with on a daily basis. I also want people to understand that Narcolepsy is so much more serious that most know. It is not something that will come and go, we live with this everyday of our lives. While this disorder is not considered terminal, maybe it should be???
Today, we were driving to go shoot my boyfriends new “rifle” (he will be so proud I didn’t say gun), and I couldn’t stand the sleepiness. It snowed here in Michigan last night, something most Michiganders love, not so much for me. While I was enjoying seeing the sun today, with the glare off of all the fresh snow, it activated that sleepy response in me. This has always been the case for me, my body says sleep when those nice sunny days come around, at darkfall, wakeup! I remember thinking about this quite a long time ago. In High School, before I had my Narcolepsy diagnoses, I wrote a paper where I imagined a 24 hour world. I think of this often, wishing that I could handle my business from 4pm to 12 am instead of 9 to 5. I spend my whole day dragging ass, then when its time to go to bed, my brain says no. I wish I would have brought my sunglasses today, that may have helped with the beautiful brightness all around, but that takes way to much fore-thought for me.
So, last time I was at the neurologist, they had this little machine in the exam room. It was a Blue Light, a certain light wave that helps regulate sleep/wake cycles. Of course, for me, I was supposed to use it in the morning, which has happened exactly twice. That was months ago…. so I have this machine I will never use because I am a zombie in the morning, but anyway…. I was wondering if this thing really works? Has anyone with Narcolepsy actually had results with this? Guess I will do more research, but if you know anything about this, please let me know.