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Re: problems with partners?

Posted by Shadow on March 07, 2003 at 04:18:29:

In Reply to: problems with partners? posted by Texan_sleepy on March 06, 2003 at 13:20:25:

Hi!

Sorry to hear that you have those problems! I always think it's not fair! Nobody of us is responsible for having N and we usually cannot help not being able to do things at the time they want to be done, but so many people are blaming us for that and just think we do not WANT to do those things. Arrgh!

I'm lucky to have a very understanding husband. But sometimes I think even he has problems to understand what it means having N. Probably it IS just very difficult to understand. He knows that I'm more tired than other people, but he does not know what it feels like. How could he? And it's probably as difficult to understand that sleepiness can come quite suddenly and that we cannot do anything against it. I explained to him that even with the med I have good and bad days and that the med helps, but does not help 100% and does not cure. Sometimes even he is the one who reminds me of that when I'm frustrated of being not able to work and live like others even with swallowing the stuff.
But it's all quite a hard job for him with me, I'm sure. And I have to explain many things again after a time.
Otherwise I'm happy about him being a person thinking very practically. So most of the times we are mainly organizing things. He accepts my time-outs and we just organize it another way if possible.

I know we all tend to do more than we can, because of the people surrounding us, but we HAVE this stupid disease and sleep just comes and when it comes we need it. And it does not help to go on fighting it up to total collaps. So when you fall asleep just fall asleep. Maybe people will recognize that our sleepiness is different when they see you falling asleep doing things (I wonder whether this is fair thinking, but it's surely less theoretically than just explaining).

Maybe your boyfriend and family could accept a regular scheme more easily? Some PWN can do well with regular naps (or at least the more or less regular). I don't manage with a regular one, because of work and each day/hour feeling differently, but have you tried?

No more ideas... I have the problems with my fellows at work. So far I have explained, fell asleep at work though not wanting it and had mild cataplexies. Some understand some, don't. Would be easier without N...

Anyway, I wish you and your boy-friend the best and hope you can manage it somehow! We need to be patient with the "normals" around us! :) Don't give up!

Greetings!

Shadow

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