Funny Friday

Today has been sort of odd. It started with my husband actually having the day off, because every other week he gets a 3 day weekend. I've been walking around all day thinking it's Saturday!

I had said at the beginning of this blog that I was also going to talk about having fibromyalgia and it's associated conditions, and living life day to day with those illnesses. It's therapeutic for me to write about it, and it's also helpful for others who have some of these problems to know they're not alone.

Well, anyway, that said, I went to my Sleep Doctor today in La Jolla. He's got fancy credentials and seems to know what he's doing. He'd been having me wear this monitoring bracelet for 2 weeks so he could see my awake/asleep hours, plus movement so he could diagnose me. He said that the data (and he showed it to me as well) shows very clearly that I have a genetic disorder called Delayed Sleep Phase Syndrome. What this means is that somewhere in my teen years, my hypothalamus decided to quit developing, and my circadian rhythm is set for me to be awake most of the night and sleep for parts of the day. I had kind of already known this because he'd told me on my first visit it was what he suspected I have.

So what's the bad news of this for me? I have 2 daughters one 8, the other 9 months. The 9 month old needs her mommy early in the morning after mommy has had about 1-3 hours of sleep. I've been stressing out big time because either I've been on serious sleep deprivation and trying to stay awake to keep track of her, or worrying and feeling guilty because her grandparents were keeping an eye on her early in the morning. In the past when I've tried to tell them that I don't go to sleep at 4am by choice, I have gotten lectured about how if I just try I could turn my hours around they'd be fixed in a snap, told I  am neglecting my child (who gets all of my waking time by the way) etc. It's causing stress. My poor husband is coming home after I've had the baby all day and can't understand why I need a 3 hour nap. We've been talking a lot today and I think he's starting to figure out thnat this really is a disability. In fact Social Security defines it as one that can be completely disabling.

The big curve ball,that upset me today was that the doctor has prescribed light box therapy, wherein I sit in front of this special light for an hour every morning when I wake up. This is supposed to help the hypothalamus reset to a more normal cycle. I am not sure how I am going to be able to do this while chasing around a very high maintenance 9 month old baby girl, unless I enlist more help from grandparents who may or may not be present depending on what's on the schedule that day.

The Doc told me that if the light box does not work there is no other therapy whatsoever to help. At first I thought he was lying to push me harder to be serious about using the box, but then I looked at http://en.wikipedia.org/wiki/Delayed_sleep_phase_syndrome and what he was saying is true.  A large percentage of patients get no results from the light box, some get a little bit, but almost all revert back to their night schedules after a short time. So anyway, I was not happy this afternoon because this is a problem I really want fixed, not just for me but for my whoile family because everyone in the house is impacted by it.

 The Doctor also went so far as to tell me to quit doing everything but taking care of my family. He wants me to stop crocheting, crafting, blogging, etc. That won't happen. :) I get joy from this stuff and we all need passion and joy in our lives.

So anyway, working through this with my husband today.

On the crafting side I have made a photographic light box today to use to take pics of items for sale so they look professional. I haven't tested it yet. I have also been working on the Sara Like Tiara shawl, which eases my spirit for some reason. I've been doing some silly little blue booties too, just because I never have. ;)

Thanks for reading my whining this evening. Lots of people have it worse than I do, but this is a problem that has caused lots of stress and grief in my life and I want it fixed!