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You will learn with time to understand whats happening to you. Its a process, you will understand with time. Although it seems you are alone you are not! There are more like you and who understand you.
You are a superman/woman because you are competing with people who don't have the difficulties you have, and even though you try harder and you will win!
Nobody you know knows what you have so don t think they understand, not even doctors know what you have. Most family doctors will not know how to treat you, so keep in touch with the sleep specialist.
There are much worse diseases so be gratefull! The bad moments are not eternal!