Thursday, January 28, 2010

The Balancing Act

Jessica is a fun-loving friend-to-all person. Beautiful inside and out, and wanting to be there for her friends. She has many friends, which leads to many opportunities for social activities. She doesn't like to stay inside all the time, but that could be partly due to the fact that she had to stay in all the time from January 2008 until the summer of 2009 - because of her illness. But, now that she's feeling better than she was and now that she's 16 and driving... There's the issue of - how do we balance having fun with not doing too much to end up in a crash.

Jessica still has Chronic Fatigue Syndrome (CFS) and still needs to pace her activities, but wants to be a normal teenager. As her mom, I'm feeling like I need to put some limits on the weekend activities. So, therein lies the battle. And it's hard. Very hard. How do you balance being a teenager (or being a mom of a TwCFS) and pacing life because of CFS?

Jessica evidently couldn't go to sleep last night and didn't sleep well. This morning Steve couldn't get her to budge at all. She didn't wake up. And he figured if she hadn't slept, then she probably needed to sleep in, but then there was that thought about the 3 days a semester she doesn't need to miss to be able to skip semester exams, and she's missed one so far. So at almost 7:00a.m. I tried again, and when I got her alert enough, she didn't seem sure that she felt like getting up, but she managed to get up and get there on time. She texted me later and said she felt "so-so." She came home tired still.

We have ice or snow in the forecast tonight. It would be kind of nice if we did have a snow day tomorrow so she can sleep in!


Lori said...

Laura, oh I hate to say this, but I think that it's something that she's going to have to learn, maybe the hard way.

If she's agreeable about managing her time according to her illness, then you may be able to work it out. If she, like 99% of all other teens, has trouble thinking logically about balancing her time, then she may have to just feel the consequences. It's not fair and it sucks something terrible, but my Jessie has had to suffer consequences many times over. If she obviously over exerts herself on a weekend and feels the effects a couple of days later, then it effects her plans when she, in turn, wants to hang out with friends or go to youth group during the week (or on the weekend following). Like I said, it sucks. There's no telling how long this illness will hang around, plus they want to go to college, so they have to learn how to manage their lives. Just my .02

Hope you're able to work things out. :)

Dominque said...

I cannot even begin to understand how difficult it must be to be a parent of a child with CFIDS. It's hard enough just taking care of myself.

Learning to understand the signals in our body and then heeding them is probably the hardest challenge we must deal with every day.

I hope she is feeling better soon...

Us said...


I'd say she's like the 99% of teens and doesn't think about balancing out her time like she should. So, she'll be suffering the consequences. But I'm still figuring out how much I should let her learn or take control of the situation and not let her do everything she wants. Is this illness going to go away?

Yep, in just another year and a half, they'll be on their own at college and will have to be able to manage it then.

Thanks for understanding and letting me vent. :)


Us said...

Thanks Dominque!

Sue Jackson said...

This is so hard, Laura! Jamie has been living with CFS for so long now (almost bedridden in 5th and 6th grades) that he's actually pretty good about managing his activity level himself. He's also just naturally a cautious person, so that probably helps, too. Tonight, his school was having a Bowlarama night at a bowling alley - starting at 9:30 pm! Jamie is usually in bed by 8 pm!! But he said, "We have Monday off, so I'll have 3 days to recover. I'd like to try to go for a little while." (and he did). We've tried to let him do most things - sleepovers, snowboarding. It's important that he not miss too much school but it's also important that he has some fun and enjoys these years, too.

Now, Craig is another story! He is a risk-taker by nature and hasn't had many limits since his CFS is milder and is so well-controlled with Florinef. But tonight we had to say no to him. He's been home sick all week (went back to school at 11 am today) and wanted to go to a friend's party tonight. We said he could go for the evening and stay until 10 (he's usually asleep by 8, too!), but that he couldn't sleep over. He was disappointed...oops! He's home now...we'll see how this went!