These are a riot! While I am not the PWN, my son is, I know he has told me how it drives him nuts when we ask what is wrong when 99.99999% of the time he is just tired. Sigh... I hate to ignore him when he looks dead because maybe there is something else going on, but I try to not ask too much.
I have to say, I can completely believe the comments you get because I hear some of them about my son! Ok, I know that co-workers isn't a big thing in his life right now since he is still in high school , but still... if you are alive and with narcolepsy I dare say comments happen. Ugh. So if you don't mind me jumping onto a thread about what co-workers say.... I have been told that:
1) He would feel better if he ate better because, you know, teens tend to eat a lot of junk. (no, he doesn't have the best diet. I feel worse now.)
2) And of course, I hear ALL the time that teens need more sleep, why am I stressed that he gets tired? All teens get tired. (Saying that he can sleep 16 hours straight and still be exhausted doesn't seem to matter. How many teens can come home from school, go IMMEDIATELY to sleep - sleep 15 hours until drug out of bed - and then continue to fall asleep in school?)
3) There is the "well, he LOOKS normal!" comment - (what am I supposed to say? Yes, he looks normal...so do people with all sorts of health problems??)
4) Let's not forget "He must be depressed" - no, he spent a year on antidepressants and it didn't do a thing for the tiredness. However, I have been told that we need to try different antidepressants. Sheesh, how many years does one need to try antidepressants before admitting that might not be the primary problem?
5) One that I CAN understand, is the comment "So, does he often fall asleep into his food??" no, he doesn't - but he has fallen asleep in the chairs at the table quite often.
6) You should check for mono again.
7) Are you sure he isn't pretending to get away with something? (YES I'M SURE!)
8) Are you sure your doctor knows what he is doing? (Well... what do you think? I'm taking him to a quack on purpose? Actually, he is the first doctor in two years that has been able to help)
9) and one to make me want to pull my hair out "You need to get stricter with him. Kids today have no schedule. Put him to bed at 8:00 and he'll feel better! Get a backbone!" ARGH!!! But of course this is my fault. Mea Culpa. Mea Culpa. Mea Maxima culpa. I already feel that good ol' mom guilt, that somehow I should have been able to stop this. Go back in time and paint a huge skill and crossbones on the sliding door so he doesn't run into it. Humph. I'd give my right arm for the chance to make him go to bed at 8:00 if that would actually do anything. But as all of you know, it won't. He will be tired no matter what.
The biggest thing I am dealing with (excuse my brief rant) is that his Dad is having a hard time with this, and hasn't accepted the diagnosis. So, I hear - on a very regular basis - things like "well, he was watching TV at 10:30 PM, so obviously he isn't too tired!" Oh good grief... his Dad is the world's biggest night owl who, extremely regularly, has his awake period in the very very late evening despite horrid sleep apnea and needing to get up for work early in the morning. You'd think that he, of all people, would understand the idea that some people's bodies are just a bit more awake at one time than another. And, DS has almost always had a nap in the afternoon so he can do homework later on. But that doesn't matter, it seems like whenever son has time where he acts "normal" and watches a show or does something with his friends then that is proof that narcolepsy isn't REALLY a problem. Sigh.... I have said so many times that DS has had to learn to still get things done even when he is tired if he wants to have a life, but the fact that he isn't always comatose and drooling into his pillow seems to be proof that he is ok and we are making way too much of this. Bleh.... Bringing up two abnormal MSLT's doesn't help, because technically the report said the 4 SOREM's, etc are suggestive of narcolepsy,( not 100% diagnostic). Now, we all know how these reports are worded, with CYA. I know, there is denial going on, but it is hard when this seems to come between us. I refuse to turn my back on my son, but it is a balancing act sometimes.
Ok, end of rant