Need to Vent

I'm one of the lucky narcoleptics that experience all of the symptoms. With Adderall, I can usually manage through the days with out an episode, but by the time 8 or 9 pm, I am exhausted and it is a battle with myself to stay awake. I stopped taking sleep meds a while back because they cause me to not be able to wake up out of very vivid night terrors and when I am able to wake up, I am stuck in very long periods of sleep paralysis accompanied by very real and sometimes frightening hallucinations. Either way, I wake up in the mornings feeling exhausted.

I have a 1 yr. old and an 8 yr. old. I also have 3 step children that stay with us every other weekend, holidays, and through the summer. Recently, one of the step kids came to live with us and is going to school with my 8 yr old. Because of the crappy job his mother did with raising him, he is an emotional wreck sometimes. He is also way behind in school. He failed the 3rd grade last year and then failed summer school (one of the reasons why he is now living with us) and because of his circumstances, they let him go on to 4th grade with a 3rd grade retention level.

This poor kid cries if you even look at him wrong. He told me the other night that he always feels sad and afraid. I held him yesterday and cried with him after he confided in me a rather disturbing experience that he had with his mother. When he first moved in, he could not spell even the simplest of words.While reading aloud, he would miss an average of 10 words per page on second grade reading material.

I feel proud because after working very hard and long hours with him every day, he is now excited about reading. He has moved up to a 3rd grade reading level and is now even reading voluntarily, for fun. His math and spelling are getting better and he comes home so excited and proud when he gets an A. His self esteem is getting better and he is happier.

As wonderful as his improvement makes me feel, I can't express enough how hard this experience has been for me. I have to devote so much time for him, all the while maintaining the house, taking care of my 1 yr old, and trying to make sure I spend enough time with my own son. Then the weekend comes and we have 5 kids. Because of the long hours my husband works, he cannot help me through the day, and the kids are often in bed by the time he is through with work. Instead of spending time with this man that I am deeply in love with, all I can think about when he is off work is sleep.

I miss him greatly. I miss feeling like I have an identity of my own. I miss feeling free and I miss having time or energy to do anything besides kids, house work, and sleep. We have not had a "date" with each other or went anywhere kid free in over a year.

I have been very excited about this weekend. All the kids are gone except for the baby. We had made plans to go to my mom's last night (another person that I miss very much). She is not able to baby sit for longer than an hour, but we can hang out there and she can help us greatly. We planned to grill out and rent a movie and just hang out. All this week I had been fantasizing and building up excitement about sneaking away with him from time to time for a few minutes, or taking a walk together through the woods, and little things like that.

So the night finally came and we were there for maybe an hour before I fell asleep on the couch. I woke up around 12am feeling disappointed, angry, and extremely depressed and still exhausted. The baby was still awake too. Even now as I am writing this I am in tears about it. I lost control and told my husband to take me home. I was angry at everyone. I was crying and yelling. My mom told me it would be ok, that we would do it another time but that made me upset because those times are few and far between. I am often very sweet, loving, and patient. I hardly ever lose my cool, but last night I felt as if I was going insane. I was angry at my husband the most, even though he did nothing wrong. I was yelling at him and demanding to go home. I told him I might as well get back to where I belong and face the fact that the only life I have now is being a house keeper and a mother.

Afterwards, now I still feel so disappointed that I missed out on a chance to finally have a little free time, but now I also feel so guilty. I feel like I was being selfish and petty. I have a wonderful life. I live in a nice home and I have the most amazing and beautiful little girl and son, and I love my step kids very much too, and I am proud and happy to have such a big family and loving husband to share it with. I feel like I was being ungrateful.

I felt like maybe if I vented to you guys a little it would help me to feel better.

Ah, Mia, I wish I had some words of wisdom for you but I don't. Sounds to me like you're an amazing person and have a great attitude and know what's important. You'll be OK, you had a momentary lapse and you worked your way through it. You know the old saying, everyone in this world has problems, the difference in people is how we deal with them. And you definitely have the right stuff.

So let's just give you an A- and you give your hubby & kids and Mom a big hug.

I hope today is better.

The kind of tired that comes with raising a family, with narcolepsy on top of that, is intense. I really hope you do get more chances for a break, but until then be kind to yourself. I feel lots of compassion toward sleepy parents and children. Thank you for your story - I think some of us have done this, too. Hope you feel better soon!


How are you feeling today? Feeling any better?



Thank you Perl, Carol, and Frances for your nice replies and well wishes.

I'm having some pretty strong sleep attacks right now, but besides that, I'm feeling a lot better. I did apologize to everyone and I gave them all a big hug. I'll give a better update tomorrow when I'm not half asleep. lol

Just wanted to give everyone an update before I get to bed.

I'm in much higher spirits now then when I originally posted. We ended up getting back to my mom's after all for a second try, thanks to my husband getting a little time from work. This time went much better. I was even able to stay awake through a movie! I had to stay moving around, but either way, it was nice.

My step son brought home his weekly classwork today and it was another nice little bonus to see some A's and B's, and also my other son in the 3rd grade got his BOG test scores and he is on a 5th grade level. I'm so proud and happy for them both. It's so nice to see our hard work paying off.

So glad to hear back from you and that you're hanging in there. Sometimes we have to measure our progress as 2 steps forward, 1 step back. But in the end, it's still progress and you're still the best!

A little ditty I read once a long time ago and for some reason stuck with me: Life is like music. Some high notes, some low notes, but a beautiful song just the same.

I'm glad you shared. I think every day is a new day, and all we can do is take it day by day. I know you were disappointed and upset, and I think we all get frustrated sometimes at the inability to not do everything we wish we could do. One thing I can say... as a mom of highschool and middleschool kids ... it really, really does get easier. Some day they aren't going to be so little and require SO MUCH of you. You'll miss it all the same, but there WILL be a day when you can devote a few more of your "spoons" (spoon theory) to your sweet husband.

We are here to listen anytime you get frustrated or down. We are your friends.