Narcolepsy poem...Would Forever Be Enough?

Would forever be enough?
 
How long could I sleep
Would forever be enough?
Must my child call me lazy
Why can’t I just be tough?
Finish the laundry, do those dishes, working full time too
When all I want is to close my eyes, only for a few…
“Why can’t you just cook me dinner?” he asks,
And rolls his eyes and sighs…
“My socks don’t match, no clean undershirts, the dirty dishes too. Your dog is whimpering to go outside, please walk him-won’t you?”
“Mommy will you play with me, before you take a nap?”
“I waited all day to see you. Please don’t turn your back!”
I fluff my pillow, turn on the fan, and try to close my eyes.
A single tear rolls down my face
I’ve failed as a mother, I’ve failed as a wife.
“Please God,” I beg, “Take the need to sleep out of my life!”
I can’t go on, I need to sleep
Just 30 minutes and I’ll fix them something to eat.
Why can’t I be like all the rest?
A perfect mom, a loving wife
Instead as I drift off to sleep
I know I’m a selfish mom, an angry wife.
There’s no way out of this sleep deprived life.
I pray to God “Please let them love me one more day-Tomorrow I’ll go out and play. I’ll do the dishes and cook some food. I promise I’ll be in a better mood.”
How long could I sleep?
Forever, I say,
But 30 minutes is all I need today.

My name is Tammy. I'm 34 and I've been married 12 years. I have a 6 yr old daughter. I have narcolepsy. Right now I'm on adderall... I've been on xyrem, Ritalin, and nuvigil. Not loving the adderall but it's easier to get than the Ritalin. I wrote this poem today...had a rough night last night. Never feel like I can do it all, and what I do-is never enough. Would like to have a friend that has narcolepsy... Someone that understands what it's really like to be tired.
 
TammyGirl28 TammyGirl28
31-35, F
2 Responses May 9, 2012

Tammygirl,<br />
<br />
First of all I loved your poem and second of all I know exactly how you feel. I have Narcolepsy. I was diagnosed when I was 10 years old. I am now 41 years old and have struggled my entire life. It's impossible to explain or make someone understand what we are going through and dealing with on a daily basis. I've been through 2 sleep studies, multiple medications and now I suffer from very frequent headaches. Most days I wake up with one at least 2 or 3 weeks out of the month. I have migrains and cluster headaches. I googled and found that Narcolepsy and headaches can go hand in hand. It's very difficult to live your daily life in constant pain and exhaustion. And worst of all, alot of doctors don't know anything about it so how can they treat you effectively??? Especially when they think you're just complaining of headaches... I just wanted to let you know that I feel your pain and you're not alone. I found that my grandfather on my mother's side had Narcolepsy so that's where I got the gene... Just hang in there. I know it's a cliche, but we both know this doesn't go away. I've prayed like you. I look at it like this though, we are having such a difficult time and no one knows what it's like, but there are allot of people out there with illnesses or disorders that are way worse. Sometimes reminding myself of that helps me to put on my big girl pants and keep going... <br />
But yes, I experienced it all. Teasing and bullying from the kids in elementary school. I was even bullied by a teacher. I have the vivid scary dreams, the paralysis and can't wake up, and all the other stuff that comes with it. But I'm determined to try to live as normal a life as I can! <br />
<br />
Sorry if I'm rambling.... I just want you to know you're not alone. I felt alone for years. I'm 41 and am just now reaching out to others who have and are going through what I am. Take care of yourself and know it's not you, you have a disorder. I don't know if any of this helps, but I pray it does.<br />
<br />
You will make it through, I know it!!!<br />
Sheri

Hi there. I am so sorry but I just now saw this response. Perhaps we can keep in touch? I am on Facebook and my email is tammyreardon@gmail.com. It sounds like you have N way worse than I. I cannot imagine having those headaches and to be so sleepy always :(. Hope we can stay in touch!

i feel the same way tammygirl just ne person to talk to that understands how hard it is to be tired all the time but also understands the pain and guilt you feel because of it

Thank you for your message. I just now saw your post. If you would like, I am on Facebook or ou can email me. Tammyreardon@gmail.com.