Tuesday, September 26, 2006

CFS Sucks

Some days, there's just not much more to say about this rotten illness. My son, Jamie, and I saw these t-shirts last year when we were both really sick. Catchy, no? (get your own at No Pity Shirts. I'm also partial to the one that says "F*** Fatigue").

So, why the bad attitude today? Well, I've been flat on my back for almost a week now. Looks like I caught the virus my sons had last week, then developed a sinus infection, just like my younger son, Craig (he gets those narrow sinuses from my side of the family). I should have known when I crashed so suddenly and inexplicably last week that an infection was behind it. I'm on antibiotics now and expecting to feel better soon.

I can handle my own crash, but I'm really feeling down about my younger son, Craig, today. The kids had a day off from school yesterday. I was very sick, so they were pretty much on their own. They spent the entire day running around the neighborhood with a group of friends, playing tag and Capture the Flag...basically, having a blast and being normal kids.

But my kids aren't normal. We're cursed with this wretched illness. Craig woke up this morning feeling horrible. He was on the floor, crying, complaining of sore throat, headache,and aches all over (sound familiar?). The worst part is that I filled him up with meds and sent him off to school. He just missed 6 days in the last two weeks and can't miss more already. I feel like the world's worst mother. Watching my baby get on that school bus, feeling so miserable, broke my heart. Seeing this unmistakable pattern of symptoms in him breaks my heart, too. He's only 8. It's so unfair.

As an adult, it's hard enough to moderate my activity level when I have a good day. It's almost impossible with a kid, especially since Craig still feels good most of the time. How do you tell a kid who's feeling great that he can't play because he might feel bad tomorrow? How can an 8-year old kid understand exercise intolerance when medical researchers don't even understand it yet?

I think it might be time to take Craig to see Dr. Bell. It's probably also time to talk to him openly about what's going on. We've avoided that so far, dealing with each symptom as it comes up, because we didn't want him to think of himself as a sick kid. At this point, though, he knows something's wrong, and we really need his cooperation to help prevent these post-exertional crashes. We'll emphasize to him what Dr. Bell told us last year - that he won't necessarily develop full-blown CFIDS.

This is all very difficult for me and my husband. It's so hard some days to keep a positive face on for the kids. I hope Craig is doing all right at school today and has perked up a bit. Rough day.


  1. Aw, shit Sue. I'm so sorry about all this. I wish I could say something more helpful. But I'm sending you hugs, strength and thoughts of perseverance. - Jennie

  2. Gosh, I have a hard enough time trying to explain to my inner 10-year-old or my clean freak self that I still have to rest when I feel good. Can only imagine what it must be like for you and Craig. :(

    I LOVED that shirt and linked it and a few other shirts, as well as you over at my blog. Thanks for posting that link!

  3. Thanks, Jennie! The good thoughts actually help a lot at times like this. I'm so grateful for having discovered blogging and the network of other bloggers with CFIDS who understand what I'm going through. It really helps.


  4. Michelle -

    Thanks for your comments, Michelle. I'm glad you liked the t-shirt. That site and the shirts were created by a young woman with CFIDS, so buying her shirts and promoting her site helps a fellow CFIDS sufferer.