Sitting still...my coming out story (The unabridged version)

You think you know, but you have no idea. 

My life with Narcolepsy.

Part one In the beginning

For the last two years I've felt...exhausted. I was lethargic. I had vertigo episodes, and numbness in my hands and arms. I'd been in and out of doctor's offices. I'd been poked and prodded.  There have been blood tests and EKGs and blood tests. Oh and did I mention the BLOOD TESTS. Then I had my sleep test. The tests lasted almost 24 hours with the most uncomfortable wires all sticker-ed to my body. From 11pm to 6am I slept. Then starting at 8 am, every two hours I had to take a 20 minute nap. To the average person this might be slightly uncomfortable but to someone with a sleeping disorder it was excruciating. The overnight test was to check to see if I had sleep apnea. I slept like a baby....but longer. I was supposed to take 5 naps during the day. After the four nap tests the gentleman said I didn't need to complete my 5th test. I felt like, hey I rocked the first four tests I don't have to take the final.

The Results

The results are in! My neurologist sits me down and goes over the test results. No sleep apnea. YAY no sleep mask for me, bitches! But the other tests show I have Narcolepsy. Or as my professional Neurologist said, "you're a dead ringer". Out of my four naps I fell asleep with in a min-5 minutes. The average person will take 20 minutes to fall asleep. Bam! Aced that test. Next my doctor told me they were measuring my dreams. In case you don't know this, there are different stages of sleep. REM (Rapid eye movement) sleep is the third phase of sleeping and this is when you begin to dream. Again, it takes a normal person about 1 hour to 1.5 hours to start dreaming. I was dreaming within 5-10 minutes. So what does that mean? Tada Narcolepsy. 

• Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks. 
  
  Causes, incidence, and risk factors
  
  
  Narcolepsy is a nervous system disorder, not a mental illness. Anxiety does not cause narcolepsy.
  Experts believe that narcolepsy is caused by reduced amounts of a protein called hypocretin, which is made in the brain. What causes the brain to produce less of this protein is unclear.
  Narcolepsy tends to run in families.

  Symptoms

  The most common symptoms of narcolepsy are:
  

  • Periods of extreme drowsiness every 3 to 4 hours during the day. You may feel a strong urge to sleep, often followed by a short nap (sleep attack).
    
    • These periods last for about 15 minutes each, although they can be longer.
    • They often happen after eating, but may occur while driving, talking to someone, or during other situations.
    • You wake up feeling refreshed.
  • Dream-like hallucinations may occur during the stage between sleep and wakefulness. They involve seeing or hearing, and possibly other senses.
  • Sleep paralysis is when you are unable to move when you first wake up. It may also happen when you first become drowsy.
  • Cataplexy is a sudden loss of muscle tone while awake, resulting in the inability to move. Strong emotions, such as laughter or anger, will often bring on cataplexy.
    
    • Most attacks last for less than 30 seconds and can be missed.
    • Your head will suddenly fall forward, your jaw will become slack, and your knees will buckle.
    • In severe cases, a person may fall and stay paralyzed for as long as several minutes.

  Not all patients have all four symptoms.
   

FAQ

Do I have Narcolepsy?

Yes, but I don't have cataplexy.

Do you fall asleep standing up?

No, that's retarded. Do you fall asleep standing up? I start to get tired when I'm in comfortable relaxed states such as reading on the couch, facebook stalking in my bed, getting my nails done, riding on planes and pimped out cars. I feel sleepy and the best thing for me to do is nap. 15 minutes later I'm refreshed and ready to go. 

Is this a life threatening disease?

No. But like anything in life you need to be cautious of what you can and can not do. Drive 4 hours to South Florida is not in my cards but I'll make an excellent sleeping passenger.

 

Are there medications you can take?

Yes there are. I'm actually in the process of treatment. There are a lot of variables with these medications. They affect my nervous system. These medications are your everyday Tylenol. FYI Adderall was invented for people like me. Your welcome my druggy friends.

Can you still drive?

Yes, I'm allowed to drive but due to the risks involve during treatment I sold my car. I'll be getting a pimp scooter in August!

Won't a scooter be more dangerous?

Not as far as my Narc is concerned. A scooter will actually keep me more awake and alert than a comfy air conditioned car.

Can't you still server?

Yep. I would totally fall asleep in a desk job. The fact that I'm on my feet running around keeps me from dragging ass.

Conclusion

In conclusion I'm still me. And by that I mean awesome. I just have to do a few things a little differently. If we're out having a good time and I say I'm tired, you have no clue how I feel. If I leave suddenly it's not because I'm rude. If you have any other questions....google it. (I'm tired now) Nappy time. 

PS I have a note from my doctor that proscribes me naps. And what? And what? Don't hate.

Much love,

Samantha

Sunday March 13th

Dear you,

He came back today. I should be happy, right? He's safe with in the united states of America. He's just a plane ride away. Just a text, a phone call, an e-mail. Why aren't I more happy about this? He's worlds apart from me right now. I know he's safe and everyone keeps telling me how great that is. What's great about a safe living person who's no where near you? I feel like I'm in captivity. Sure I'm getting fed but what I'd really like to do is run and jump and be free. Look at my record, of course this is something I'd sign up for. Wonderful not physically available male. Why do I pick such people? Why is the long distance relationship so appealing to me? Why do I chose these closed off men. These enigmas. Oh you're damaged goods, step right into my office. You are emotionally unstable, here let me fix that for you. Oh you're no where close to me. Good thing I just want to see you when I want to see you and that's it.

My emotions are quite confused. They just want to embrace him but he's not ready. He's back to bury his friends and soldiers. What am I to do or say? I want responses to my questions but when is the right time to ask? I can't imagine what he's going through right now. Is he here just to bury his friends then off to watch more die? I feel selfish for wanting his attention right now but at the same time I want to hold my ground. I'm not an Army wife. I don't know what to expect. The whole "we know each other so well" bullshit isn't really panning out. I don't know this person who've you become. Why did I think you'd stay the same after 10 years. You grew up, got a job, and live that life. It's a very intense route that you have taken. How am I supposed to compete with the crazy world you have around you? I don't even know if you want me to compete.

What happened that night? I obviously was out of it, but you were fine. You had ties to other people yet you chose to lay next to me for a few hours in the wee morning talking about everything and nothing. Where you just pushing reality away? Was I just a distraction from your life? Looking back it seems silly. Everything I've done and said since then seems silly. And finding out that someone still thinks you're together should have given me the red flag on you, Maybe you're around guys too much that you don't know how to treat women.

I'm just a little disappointed in you. Actually I'm really disappointed in you. You were someone I trusted and counted on now you're starting to become a blur like the rest of them. Is that what you want? Is that even fair to ask right now? It's not. You're all shook up and need time to heal and I didn't realize that's what I signed up for.