Today was a really hard day. I was diagnosed with narcolepsy about a month ago. I've had a problem with it for about two years now. I don't know why it took so long to become a problem. It may have been that for many years i worked nights and slept days "masking" the symptoms. My neurologist started me on medication to help me stay awake during the day. It worked great for a while. I felt "normal". Then it started to fade. I have good days and I have bad days. It seems worse now though. I think its due to knowing what normal feels like, so that now I'm more aware of the fatigue. Some days all i can do is count down the hours to nap time so that i can sleep. Its frustrating. I'm so tired during the day and then when its time to go to sleep at night i can't. Then i want to sleep in and ask Matt to get up with the kids so i can sleep as much as possible.
I feel like I'm letting my family down. I can't get down on the floor to play with my kids because I feel like I'm going to fall asleep. I get short with my son because I'm so tired then feel like the worst mom. Matt doesn't understand what its like yet. I know he gets frustrated when i make him get up early nearly every day. I try to give him a day on the weekend where i get up with the kids and let him sleep. He doesn't understand how hard that is for me. When he comes home from work all he wants to do is relax. I understand that. I hate asking him to take over, but most days i am BEYOND exhausted by the time he gets home. After we get the kids in bed he always tells me to go to bed early. Its not that easy. I lay there for hours before i finally fall asleep.
How do you make someone who doesn't have this illness understand the toll it takes?? I love my husband. He is a great partner and father. I don't know if I'm asking too much or if it will just take time for him to fully grasp it. I've been reading some forums about narcolepsy and there seems to be a high rate of divorce among couples with a narcoleptic partner. I don't want to end up that way.
Bad day... bad, bad day.
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