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I'M Tired Of Being Punished For Being Tired!


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#1 hyperlexic

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Posted 30 August 2010 - 09:14 PM

My family seems to think I should still be able to do chores and that because I could do the laundry a few months ago I should be able to do it now.
My husband is doing one of his angry cleaning things. My mom thinks that I just need to soldier on and do the stuff anyway. I'm having cataplexic attacks every other minute. sure, they don't last even a second each time, but it is dangerous. I'm having microsleeps once 45 seconds. Now he expects me to come right to bed, just after he yelled at me. I don't know what to do. The next sleep study isn't till friday. How am I supposed to make it that long? I only get about 3 and half hours sleep at night. I'm out of steam. They think that what I'm experiencing is the same as sleeping four hours one night. Or that it's the same as a migraine, or fibromayalgia. How can I explain to them that it is not the same. I've spent years trying to do the stuff anyway, and it has left me feeling like a shadow of my former self. What is it going to take to convince them that I'm not at the breaking point, I've been broken? Am I going to have to have a serious cataplexic attack first? My mom's suggestion to stop the attacks is not to get emotional. But I'm exhausted. I just don't have the strength left to control my emotions.



#2 Saraiah

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Posted 01 September 2010 - 04:46 PM

Hey hyperlexic,

Hang in there. This is really miserable, but it's very likely that you're going to get diagnosed, and treated soon. The best antidotes to the misunderstanding of family members, for me, has been 1) first getting a clear diagnosis, 2) getting information to my family about the disease, and 3) making it possible for my family to meet and talk with other people with narcolepsy. You're on your way to #1.

I've said this on other threads, but you might want to order a used copy of Marguerite Utley's 1995 self-published book, "Narcolepsy: A funny disorder that's no laughing matter." It's available on Amazon. Although it's now dated particularly in terms of available medical treatments, and doesn't fully reflect the range of experiences that people with narcolepsy can have, I found it really helpful nevertheless in beginning to understand better what was going on for me. And when my family members read it too, that helped a lot.

And once you've found some better medications for you than what you've got now and have more energy, I bet you'll be able to find other PWN to meet with if you'd like to. That's made all the difference for me, and I recommend it highly.

#3 hyperlexic

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Posted 02 September 2010 - 01:36 PM

Hey hyperlexic,

Hang in there. This is really miserable, but it's very likely that you're going to get diagnosed, and treated soon. The best antidotes to the misunderstanding of family members, for me, has been 1) first getting a clear diagnosis, 2) getting information to my family about the disease, and 3) making it possible for my family to meet and talk with other people with narcolepsy. You're on your way to #1.

I've said this on other threads, but you might want to order a used copy of Marguerite Utley's 1995 self-published book, "Narcolepsy: A funny disorder that's no laughing matter." It's available on Amazon. Although it's now dated particularly in terms of available medical treatments, and doesn't fully reflect the range of experiences that people with narcolepsy can have, I found it really helpful nevertheless in beginning to understand better what was going on for me. And when my family members read it too, that helped a lot.

And once you've found some better medications for you than what you've got now and have more energy, I bet you'll be able to find other PWN to meet with if you'd like to. That's made all the difference for me, and I recommend it highly.



It's hard for me to be patient when I'm so tired. Although at least some of the time is whittled away while I do automatic behaviors. Also there are the naps. Plus I do also have adhd, which is not known for making patient people. And it is hard to be patient when one of my automatic behaviors tends to make messes that I either don't know about or am too exhausted by the automatic behavior to deal with. And there is the usual, "What was I doing?" And the usual, "I was going to say something..." There was something I was supposed to do today, but I don't remember what it was. I'll have to muster up the strength to call my mom and ask her. I know that I had three tasks to do today, but I don't remember any of them. I'm trying to talk my family into getting me one of those light scribe pen things but no luck. My mother in law says it wouldn't make a difference. I've even tried making lists, but it takes such a long time to make them. I have to ask what I have do about ten times to get a list of three tasks written down. It gets people angry at me. I remember where I was when I was given instructions, I remember being told the instructions more than once, but the actual content is a blur. I even remember trying to repeat what was said. I probably sounded drunk. I usually do. It doesn't help that the instructions are given before I've had the chance to take my adhd medicine. Anyway, I'm going to try to ask my mom what I had to do. I only have two hours to do it in.

#4 ohiolor

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Posted 02 September 2010 - 03:44 PM

Hi Hyperlexic,

I'm sorry you're going through so much now with so little (if any) support. Hopefully you'll get your diagnosis soon and things will improve.
I had a couple of ideas that might help you with remembering tasks to do. If you have a cel phone, you might try asking the person who is telling you to do something to text it to you (or leave a message on your answering machine if you don't (or they don't) have a cel. This way you can refer to it anytime, then delete it once you're done. Another thought that might work would be to carry a small tape recorder that you could use to record the info given, then refer to as needed. Hope one of these ideas might help.

Wishing you well,

Lorrie

#5 hyperlexic

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Posted 02 September 2010 - 05:06 PM

Hi Hyperlexic,

I'm sorry you're going through so much now with so little (if any) support. Hopefully you'll get your diagnosis soon and things will improve.
I had a couple of ideas that might help you with remembering tasks to do. If you have a cel phone, you might try asking the person who is telling you to do something to text it to you (or leave a message on your answering machine if you don't (or they don't) have a cel. This way you can refer to it anytime, then delete it once you're done. Another thought that might work would be to carry a small tape recorder that you could use to record the info given, then refer to as needed. Hope one of these ideas might help.

Wishing you well,

Lorrie



I know my family is trying to help me, but they don't seem to understand what I'm dealing with. The sleepiness is worse than Mono. The forgetfulness is awful. They equate with things they've experienced, which are not the same. And they've spent a ton of money trying to help my adhd, mom my has no retirement savings. I just wish they knew what I was feeling...