Deb, I hope you can hold on to the wonderful things, the things we need to keep us going.
I will have a few good nights, and then feel better. Then when the good period comes back, I will think that it will last forever. I'm already better. Slept some last night.
It's good that you think it will last forever; how else could you enjoy it? The problem is if you think the bad times will last forever when you're in the middle of them. It's usually possible for me to realize - at least intellectually, if I can't feel it in my gut - that bad times always end, whether I do anything to end them or just endure through.
Almost no one understands what this disease is like. I don't have many friends, probably because I'm picky that way. If you don't know my disease, you don't know me!
If someone implies they know what I'm going through, I'll either say "having restless legs is not even close to having this disease. Don't be fooled by the name, it affects all different aspects of our bodies and our lives" or
"Did you know that there's only one disease in the world that causes greater sleep loss than mine?" - they always ask what it is, then I say "It's called Fatal Familial Insomnia. It's fatal, because everybody who has it, dies. From being unable to sleep. It makes them dead." or I'll say
"Do you want to know what my disease is like? I can tell that you don't know, so if you're interested I'll tell you" - the implication being - don't talk as if you know about it, because you don;t.
Some people are actually interested in learning about it. Those are my friends. The others are just people I say hi to.