Around 12:30pm, I wake up. It takes me half an hour for my brain to boot up, and get out of bed and awake enough to take my morning meds.
One hour after that, I can eat. It's my golden time of the day when I can think, and get some papers off my desk, pay the bills. Maybe go run errands or get meal planning done. If I go to the grocery store, I use those little motorized scooters with a basket to get around the store. It is so much easier for me to scoot around the store instead of walking. It used to be exhausting to go food shopping, but now I can actually go up and down the aisles and have fun without wearing myself out. And it's one thing I can do to take some of the burden off of my husband. I focus on doing one main thing to help care for the household per day.
In the late afternoon, Baby E comes home from grandma and papa's house, and we play for a while on the floor. She is starting to enjoy mirrors, blocks, and rattle toys. She also has some music CD's, and a little piano, xylophone and drum set to make noise with. I can hang out with her and play peekaboo, or else we go for a ride in the car and run some errands while enjoying the sunshine before dusk settles in.
Around 5, E starts her bedtime routine, and A and I swap on who gets baby ready for bed, and who is starting to work on dinner, or I just crash on the couch.
Around 7, we both crash on the couch and watch some TV, often while A makes up hours for work.
Then at 9, it's time to get the house picked up and ready for bed.
At any time between these daily boxes of time, I nap to recharge my batteries. Having FM/CFS and EDS is a lot like old school rechargeable batteries that lost the ability to hold a charge for very long; keep having to recharge them and resupply the stamina.
Depending on the night, I have more or less troubles with getting to sleep. Insomnia is a frequent companion. This isn't a bad thing when E is teething so I'm up anyway, and can give A a solid night's sleep before work the next day. Every month or so I'll have a night where I just can't sleep for anything, so I take the opportunity to brain dump, or just rest until it passes and take in some tunes.
Most nights I'm awake for a few hours after A retires for the evening, and work on doing some writing or reading books. I'm so thankful for a good library system nearby, and a system of friends to loan me books and music. A really good night is reading a few chapters of an enjoyable book, and then a good shuffle of music on my ipod. It's a recipe for a relaxed state, and good dreams to drift away into sleep, so I can do it all again tomorrow.
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