Journaling or sleep diaries.

[becat]

You know we talked about this sleep diary idea and how it goes. Sorry to have started a new thread, but I couldn't find it.
I think I may have have a light bulb moment

When I starting ask for Quality of Life statements I was shocked at how hard they are to write. Not only for myself, but for many others. It was hard to really pick apart what it means to live with RLS. How many thing and people it effects when someone suffers with this disorder. I had no idea ahead of time how many people would respond. I had no idea what the impact would be. Ann, yes your right, I too feel that we are being heard. I do feel that others out there are listening or reading and putting a face to RLS. We all did a good job, just not yet finished.
Now in trying to keep a sleep diary, I found it too difficult to know what I wanted to write. Not to mention for what purpose. What I might write for myself wasn't going to be something for the doctor. They don't want to spend that much time reading information the can get from us vaguely. So my problem with keeping the diary was a real.
I thought about this the other night working on some of the Q of L statements, so many wonderful statements have come in already. Thank you all, it's going to be a great packet with a wealth of information. AWESOME!
My thought is this......a Quality of life statement starts out your diary. Then as you feel the need to vent or add information you do so. Like last week I would have added that it's official, I suck at the grief process.
But my RLS diary could have changed a million times last week. Many topics and concerns. Good things to add, bad ones to repeat.
I think it may be, for me, the answer to our questions back in Jan. ....What is this for and how will we use it.
Instead of a sleep diary, I'm going to start a Q of L statement and then it will become my RLS diary. These statements can change over the course of time. Sometimes, like me, great treatment at hand and whammo, life happens and rocks the boat. I thought I had control of it best I could, but only to fall flat last week. With what is coming in a short month, I'm trying my best to prepare mentally. Trying my best to stock pile my medications in time to have them ready. Adapt a second plan if needed, with the doc's help.
It's just a thought, I really liked the idea of the diary. But I had no connection to it's purpose. Now I think I have my idea of how mine will be more helpful to me.
Thought I share..........strange thing HUH LOLOLOLOLOLOL
Love and hugs to all.

[Sara]

Hey, Becat...

That's an interesting idea. More journalling than sleep diary... but that might be a good thing for many of us, too.

I also sort of faltered in my attempt to keep RLS notes. Still in "construction mess mode" around here, and any sort of symptom diary/journal is a HABIT you have to get into. I just haven't gotten into it yet.

But certainly if you were writing down things like "had PMS and RLS tonight and I'm miserable" or "paced back and forth in the theatre while my family watched Shreck 2, and they were obviously disappointed I wasn't with them"... over time would give us patterns that we could condense into "doctor form" for that purpose, and also would give us an overview of how much RLS truly impacts our day-to-day lives.

Seems like it might be an easier way to approach the whole issue and just get started writing SOMETHING down. And once we GET into the habit, I bet we might be better able to start keeping track of some of the little specifics some of us were curious about when we discussed this the last time it came up.

Hang in there, sweetie.

Sara