Crazy daze
I'm tired. I'm always tired. I can't remember a day when I was not tired. Living with narcolepsy is a bitch. No, I don't fall asleep instantly in my soup, but I am always tired. I could close my eyes and go to sleep anywhere, any time....except at night.
Every afternoon, I sit at my desk and it's an effort not to let my eyes close. There are times I'll suddenly realise I've had my eyes shut for a couple of minutes and I hope like heck that nobody's noticed.
I thought being on Dr Fun-Killer's diet would help in some ways - not eating sugars and high GI foods, making sure I'm balancing my sugar levels during the day. But it hasn't helped. It's just reiterated the fact that it's something I can't control without being on some sort of medication. The only medication that helps is a narcotic. I haven't taken it in over a year, because I really wanted to try to live without having to pop pills every day and feel like a junkie. But I'm seriously considering going back on them so I can concentrate and be more alert again.
I don't sleep at night. I don't go through the regular sleep patterns that people do. I go from being awake, straight to dream sleep, then awake again, averaging about every 90 minutes.
Generally, it doesn't stop me from doing anything. Once I'm up and doing something, as long as I stay active, I'm good. But get me at a party at night, where everyone sits down after a while, and I'm gone. If we're going out somewhere, keep me on my feet and active, or I'll crash quickly.
Because of this, I find it hard to come up with activities to do. Not because I don't want to do anything, but the thought of using energy and knowing I'm going to have to make concerted effort, makes getting up and motivated difficult. But tell me we're going somewhere, or we're doing something, I'll get organised and I'll be there. I just don't want to have to think of it myself. It's not coz I'm lazy. It's just coz if I didn't have to make the effort, I wouldn't - because my body wants to sleep.
I have to push myself so hard to complete a task sometimes. If I take a break from doing something, it's likely I may not come back to it. It's a conscious decision to keep ploughing on when my body wants to shut down. When there are other people involved in that task, it's worse. It's not that I'm less keen to finish it, or that I don't care, or that I don't want to put in as much effort. It just takes me more effort to keep going.
Psychologists would tell you narcolepsy is a form of escapism. Sleeping is hiding from the world, escaping from reality and not wanting to face certain things. Maybe. But it's certainly not a nice reality in itself.
I don't want to be always tired. I don't want to think I'm always complaining about how tired I am. But I don't want to be constantly medicated either. I don't know that there's a balance between the two though, so it's one or the other. The question is, which is worse?
Every afternoon, I sit at my desk and it's an effort not to let my eyes close. There are times I'll suddenly realise I've had my eyes shut for a couple of minutes and I hope like heck that nobody's noticed.
I thought being on Dr Fun-Killer's diet would help in some ways - not eating sugars and high GI foods, making sure I'm balancing my sugar levels during the day. But it hasn't helped. It's just reiterated the fact that it's something I can't control without being on some sort of medication. The only medication that helps is a narcotic. I haven't taken it in over a year, because I really wanted to try to live without having to pop pills every day and feel like a junkie. But I'm seriously considering going back on them so I can concentrate and be more alert again.
I don't sleep at night. I don't go through the regular sleep patterns that people do. I go from being awake, straight to dream sleep, then awake again, averaging about every 90 minutes.
Generally, it doesn't stop me from doing anything. Once I'm up and doing something, as long as I stay active, I'm good. But get me at a party at night, where everyone sits down after a while, and I'm gone. If we're going out somewhere, keep me on my feet and active, or I'll crash quickly.
Because of this, I find it hard to come up with activities to do. Not because I don't want to do anything, but the thought of using energy and knowing I'm going to have to make concerted effort, makes getting up and motivated difficult. But tell me we're going somewhere, or we're doing something, I'll get organised and I'll be there. I just don't want to have to think of it myself. It's not coz I'm lazy. It's just coz if I didn't have to make the effort, I wouldn't - because my body wants to sleep.
I have to push myself so hard to complete a task sometimes. If I take a break from doing something, it's likely I may not come back to it. It's a conscious decision to keep ploughing on when my body wants to shut down. When there are other people involved in that task, it's worse. It's not that I'm less keen to finish it, or that I don't care, or that I don't want to put in as much effort. It just takes me more effort to keep going.
Psychologists would tell you narcolepsy is a form of escapism. Sleeping is hiding from the world, escaping from reality and not wanting to face certain things. Maybe. But it's certainly not a nice reality in itself.
I don't want to be always tired. I don't want to think I'm always complaining about how tired I am. But I don't want to be constantly medicated either. I don't know that there's a balance between the two though, so it's one or the other. The question is, which is worse?
posted by E in Oz at 1:02 pm
these thoughts escaped my brain at 1:02 pm
4 Comments:
I never sleep either - maybe we should fins an all night bar some time and let the wierdo normals sleep...
I like Sal's suggestion. Hypnotic suggestion might just do the trick...
I'm curious, do you work out? I know you used to, from reading things, how often to you go and does it change how you feel at all during the day or how you sleep at night? That's the one thing that works for me - aerobic activity keeps me awake most of the day (of course, there was the 9:30am slump when I used to get up at 4:30am for the gym. there was always a slump..).
Do you think it could be a food allergy? Although it sounds like you've felt like this your whole life so at some point you would have found out that food that could cause it..
I'm sure you've tried everything and thought of everything.. so I guess I'll just give you hugs...
((((hugs)))) from me too.
I've talked to you about my insomnia and B's apnea, so I know you know I know. You know? lol.
Just my opinion, due to having had to come to terms with being on an opioid narcotic 24/7 for the pain control, but I don't think there's any correlation between taking medication and being a junkie. Believe me, I know the feeling, and I know how you don't want to rely on a drug, especially considering the stigma society puts on narcotics. But you know there's a huge difference between medication and drugs.
Anyway, I know you've tried a number of alternative therapies. So, here's a (((((hug))))) as my contribution.
R
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