Thursday, February 11, 2010

Still Shaky

Jessica wasn't feeling well yesterday, and stayed in bed all day until dinner. She was tired, but also she was stopped up and sneezing, so she thinks it's a "normal" sickness. I don't think so. I think it's from over-doing.

She signed up to act in the Dinner Theater at church that our youth is putting on. They had rehearsal last weekend including a lock-in rehearsal Friday night. And then during the snow, she and Matthew decided to walk down to Sonic for lunch one day, and realized it was a little longer and harder walk than they imagined it to be trudging through the slush and snow with it raining on them.
So - she's been pushing her limits.

We had a talk tonight. The AP classes are hard. It seems that she was homebound for a year and a half, and then went back to school and saw what all she was missing... We had tears tonight, and she said she's "tired of it." Basically she's tired of being sick and "not being able to do anything." I actually have been feeling like I'm going through the empty nest syndrome early because I feel like she's been doing quite a bit now that she can drive. But she mentioned an example of - when she went skating with her friends I told her to be home earlier than her friends (9:30)
, and she can't stay up as late as her friends, and she wants to dance, etc... In other words, she can't do things like a "normal" teenager. I had been seeing this in her - that she's trying to forget that she has CFS and trying to be normal. And pushing her limits in the process. She said she would "push through it," but I'm not sure what that means. Any suggestions for moving on, dealing with it, and accepting it?
Though I think it was better just from venting.


Lori said...

Oh my goodness - have I heard that before. It breaks your heart because it truly sucks. I think you will all have to work through this and figure out what works for everyone.

Here's one way to think about it (which I'm sure you've already said to her). If she paces herself, she can do more. It's as simple as that. Otherwise, she goes too hard and misses out on something. Sometimes it's worth it, of course - like a dance, etc. I think it's got to be harder for kids though.

Good luck. My prayers are with you.

dominique said...

I can tell you I don't know if we ever get it right when it comes to not pushing. This illness waxes and wanes so it is hard to do 'it right' every time.

Having said that, I didn't stop pushing it until I got tired of hitting the proverbial wall and crashing. Until I had that ah hah moment, I kept going forward because I didn't want life to pass my by.

I cannot for one moment understand what this process must be like a child.

Unfortunately, until she has had enough of the pushing, crashing, recovering process, I don't know that you can help her understand.

I had many people tell me to pace myself but I had to figure it out on my own.

Again, I am not in your shoes and I can only offer my experience.

I will be praying for wisdom for you and acceptance for her.

I tried to find a book or website for teens with CFIDS but at this moment can't find any.

I found some links of stories written by other teens with CFIDS and maybe it would help you daughter to read them and learn from/hear their stories.



I hope that helps. Let me know if there is anything else I can do or if you just need to 'vent!"

Us said...

Lori and Dominque - Thank you! I guess she will have to figure it out. I do try to tell her that she can do more if she paces herself. She thinks she is pacing herself well though. Like you said, sometimes it's worth the crash. She has a weekend youth retreat coming up, and my mom is asking why I'm letting her go, but I can't have her just do school and that's all!

Thanks for the prayers too! And the links, Dominique!