Ugh! I have been through the wringer! My mother in law passed away, drama with the neighbors, then my mom passed away! I’ve been feeling really anxious and barely functioning. Taking my meds to stay awake has become important for me just to keep myself going. It’s much more depressing when I just sleep all the time, so I’m trying to remember that and take my meds!
Disability
Today has me thinking about being on disability. It is a mixed blessing. I am thankful to have a steady income to help support myself and my family, but the feelings associated are rough. I often feel like I am missing out on what my life was “supposed ” to be. I spent many many long years in college, often taking just one class at a time. I thought I would never give up. I did. Though now I don’t see it as giving up, it still hurts. People assume they know me, I’m just one of those lazy people who live off the government. So much of our self worth is related to our career and what we’ve accomplished professionally. When I think about where I should be, it just tears me up, wishing I had lived up to expectations. Sitting home everyday sucks, being in pain and exhausted all the time sucks. Making barely enough to get by when I should have a comfortable life by now sucks. I am not on disability because it’s the easy way out, this was the only option left for me.
Off to a good start
Well, I’ve been taking my meds somewhat regularly for a couple weeks now, I feel better! I’m not sure why that is such a surprise, of course I’m going to feel better when I’m getting more accomplished. I did tweak my back the other day, too much energy, over cleaning and bam! It’s all about balance and finding that sweet spot.
Meds
I have started back on my Narcolepsy meds. I really haven’t been taking anything consistently for a looong time. I started a 10mg adderall a couple weeks ago in the morning. Morning for me can be anywhere between 8-12. I do try and take that first dose before ten, that means by noon I’ll for sure be alert and out of bed. It’s been going well and I will add a second dose in the early afternoon in the next couple of days. I recently got my epidural injection and thought my back would be feeling better than it is. I’m thinking the added pain could be the extra activity my body is getting just by being awake more. Always lots of stretching to keep me limber and moving.
I know that taking care of myself as a whole is important, juggling all of the balls of my ailments is hard, but I’m determined.
Why can’t I sleep?
One of the craziest things about narcolepsy is that I can be so exhausted all day, but up all night! I haven’t been taking any daytime meds, but have been out of Benadryl for a couple days. I actually just drove up to the gas station to get some because I can’t stay up all night like the last couple of nights without it. I’ve used benadryl for years, it gets me drowsy enough to nod off, works better than any prescription meds I’ve tried. I have an appointment with a sleep doctor Friday, I haven’t been in years.. So I’m sure they’re going to want to play around with meds. Well, I’m game.
Here’s to some sleep soon.
I’M BACK!
Here I come, I wanna write, what better place to start!?
Sleeping more now that it is cold…during the day!
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!
Another lazy Narcoleptic? No way
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…..
Narcolepsy causes disconnect from reality
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!
Narcolepsy Weekend (A little late)
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.
Good Nite
narcolepsymom 