Friday, June 27, 2008

On Vacation

Just a quick update from Oklahoma, where we're visiting my in-laws. We're enjoying our vacation so far and had a good trip out here. It's a little strange this visit because my mother-in-law recently moved to a nursing home, but we're visiting her every day and bringing her home for home-cooked meals and, well, just home.

My month-long streak of feeling great finally ended with a mild crash. Craig had a couple of bad days earlier this week, so I suspect some sort of virus got to both of us. I've had a couple of days with a queasy stomach, achy knees, and feeling run-down. I've had that odd combination of symptoms before. I'm not back to 100% yet but doing much better today. I even baked some zuchini bread this morning.

So, all in all, doing pretty well and hoping to get back to great by tomorrow!

Wednesday, June 18, 2008

Feelin' Good!

Still very busy here - now we're getting ready to go on vacation, taking our annual road trip to visit family. This year we'll be going to both Oklahoma and South Dakota. Lots of long miles, but we love these trips. We really enjoy camping in National and state parks across the country, seeing the sights, and finding cool out-of-the-way local food (ever watch Diners, Drive-Ins and Dives on the Food Network? We love that show and are planning to check out a few of their recommendations).

Even with all the stress and rush of preparing for such a big trip, I've been feeling really great. On my scale of 1 to 5 that I track, I've had a full week of straight 1's and haven't had a single bad crash day in over a month. So, I'm really looking forward to this trip.

My almost-14 year old son, Jamie, has been struggling a bit lately with lower than normal stamina and more sleep problems. He's grown tremendously in the past year - our relatives hardly recognize him when we see them! So, the doctor and I think he may be growing faster than some of his medications can keep up with. We had a wonderful visit with his pediatrician last week. She is just amazing, taking the time to cover every single aspect of CFS while we're there. She made some recommendations to try to help improve his sleep, and we're hoping that will help improve his stamina as well. He's still doing fairly well, just resting a bit more, so he and Craig are also looking forward to our vacation. All those miles in the car are actually pretty relaxing for those of us with CFS and keep us off our feet part of the day! We have a huge stack of audio books to bring along.

Hope you're all enjoying the summer and feeling good, too!

Friday, June 13, 2008

Letting Kids Be Kids

I've neglected my blog a bit lately because we've been so busy around here. The last week of May and the first week of June were packed full of end-of-school events, soccer stuff, work-related travel, travel to see family, and houseguests. Whew!

In the midst of all that, our two boys each had friends sleep over one Saturday night. I was trying to help out their parents, one of whom has been very sick (most likely Lyme disease) and another one who broke his foot. Besides, our kids love to have their friends sleep over, just like any other kids. Sleep-overs at our house are a bit different, though, because both boys have CFIDS and will crash if they don't have enough sleep.

So, on this particular Saturday night, my husband came up from the basement after shushing the boys for the tenth time. He was completely frustrated - by the impossible task of trying to get four boys to settle down but also because we're in the position of having to interrupt sleep-over fun to make sure our boys will be able to get to school on Monday morning. He said to me, "When will we be able to just let kids be kids?"

We both recognize how fortunate we are, that Florinef has worked so well for our boys. We know of many kids with CFIDS who are too sick to even get up off the couch (and we went through that with our own sons). They really are able to do a lot of what healthy kids can do now. But, we still have to be constantly on alert - take your medicines, drink more Gatorade, don't stay up too late, take a nap so you won't feel bad later...

So, now it's summer vacation. What a relief! We still have to be vigilant about many things, but we can loosen up a little bit without worrying about missing days of school. Already, the boys have had several sleep-overs (we still can't let them stay up past 11), have had friends over almost every day, have enjoyed our community pool, and have spent wonderful hours playing in creeks and building dams. Summer is a wonderful time for us, without the constant specters of homework, make-up work, and counting days absent. Now is when we can let our kids just be kids.