I haven’t felt this crappy since…well, since before I was diagnosed probably. I HATE not being in control and my life is spinning out of my grasp. I can only do so much, I can only be so many places and I can only survive on so much sleep. My disease/condition/weakness and I have made peace a long time ago. Yes, having narcolepsy is a burden. A frustrating burden that most people don’t understand or don’t care to understand. To a lot of people, it’s a joke, portrayed poorly and inaccurately by Hollywood. Some people have never heard of it, or simply don’t know what it really is. But for me and for my family, it is very real and while I don’t mind the occasional joke, it’s just not funny. It’s my reality.
What changed? I found out at the end of October that there is a nation-wide shortage of my medication used to treat the excessive daytime sleepiness part of my disorder and it is unknown when the shortage will cease. They predicted mid-November, but now they are saying December and I’m not that optimistic. So I’ve been living unmedicated for almost a month and WOW, is it hard. I forgot. I forgot how tired I get, how easily I fall asleep and how hard it is to wake up. I forgot how much of my life could be sucked up by sleep, how out of it I could constantly feel – like I am living in a haze. I also forgot how awful it is to be constantly late because “I fell asleep” – how STUPID it makes me feel and how frustrating it is to not really be able to do anything about it.
It’s been a long time since I thought I don’t know how much longer I can do this, or had to say no to things because I knew it just isn’t in the cards right now. Or since I thought – WHY ME? DAMN NARCOLEPSY! and NO ONE UNDERSTANDS. It goes against the very fibre of my being to admit defeat, to admit that I can’t do something or to simply not be able to do something. I already hate the level of dependance my life has on other people, but now…
Our family is living off of pre-cooked, frozen or easy meals, like pancakes for dinner, my kids are in heaven because of their unlimited screen time hours…all because I can’t pull it together enough to NOT be sleeping at dinner time. And before dinner time. Or when my kids get home from school. Or when my kids are supposed to be leaving for school. Or when I’m supposed to be picking my kids up from school. Or when I’m supposed to be at work. And on, and on, and on.
I’m not writing this for a pity party. Or asking for help. Just understanding. Just forgive me my incompetence and have patience with me. I’m trying. And failing, but hey, at least I’m trying.
Confessions of a narcoleptic right?