Monday, September 18, 2006

Treading Water

I just burst into tears for the third or fourth time today. I’m trying to hold it together, but I’m not succeeding very well. Our 8-year old son, Craig, is still sick; he’s been flat on his back wiped out for eight days now and has missed six days of school.

I took him back to his doctor today (third time in a week). He still seems to have a sinus infection, despite the hefty antibiotics he’s taking. The sinus symptoms are actually comforting to me because otherwise, this just looks like CFIDS. We went through this same pattern over and over last year. I’m sure the school principal will be calling soon to ask what’s going on and tell me how important it is that Craig attends school.

What the school doesn’t get – and what scares us the most – is how completely incapacitated Craig is. It’s not as if we’re keeping him home from school on a whim; he is not physically capable of getting up and going to school. Despite the sinus infection, my husband and I know that there’s more to this. We can clearly see the parallels between Craig’s debilitation and what we’ve gone through with Jamie and with me.

We know that Craig is very likely to develop full-blown CFIDS. We keep telling each other we can handle it, we’ve been through it before, we know what to do this time around. It’s still terrifying.

We’re in this in-between stage right now. Craig has these horrible one- or two-week long crashes, but he’s still well and perfectly healthy 80-90% of the time. He’s not sick enough to be officially diagnosed with CFIDS, even though the pattern is obvious to anyone who’s lived with it. The school wants a written diagnosis from a doctor as to why Craig misses so much school (his absences are infrequent, but these 1-2 week blocks add up fast). Instead, we give them a collection of individual doctor’s notes that don’t really explain this level of debilitation.

I’m just babbling here – releasing a stream of thoughts because I need to let them out of my head. I’m sure that in a day or two, Craig will suddenly bounce back and be his usual energetic, bubbly little self. Then we’re back to waiting and watching – for the next sinus infection, for the next crash, for the time when he doesn’t bounce back. That sounds horribly dismal. If you’ve read this blog before, you know that’s not the way we live. We try hard to find joy in every day, to take life one day at a time, to enjoy and appreciate what we have. But somewhere just below the surface, we’re waiting and watching.


  1. Hang in there Sue. I am sorry this is so hard. Remember to take care of yourself while you are taking care of Craig. It's ok to feel despair for awhile. Then you draw on your strength and keep going. I know you can. - Jennie

  2. Thanks, Jennie. That's just what I needed to hear yesterday. It's the cycle we all go through with CFIDS, isn't it? We just keep hitting bottom, then climbing back up again. Thanks for reminding me I'm not alone.