Thursday, May 04, 2006

More of the Same

Wow, it's been a week since I've written here. That's unusual for me; I am usually brimming with thoughts and words. I guess my silence has been due to a feeling that there's nothing new, just the same old routine. I haven't felt inspired to write about it and certainly doubt that anyone would want to read about it.

It's been a relatively rough week physically. I had a few days of being severely crashed,unable to do much of anything, and the rest has just been feeling not-so-good. Who knows why this time? The weather? Allergies? Lingering effects of my over-activity last week? I'm bored with trying to figure it out yet again.

Emotionally, my impatience with the same old stuff has been punctuated by flares of stress. Even that is the same old routine, though - mostly school issues, worrying about another round of standardized testing next week, frustrated by my unreturned calls, another round of calls and concern from my younger son's principal over his excessive absences.

That's probably the source of much of my stress (and probably the long crash, too). We have been focused on our younger son, who missed another couple of days of school this week. We thought last Friday that he might have strep throat or an ear infection (i.e. something normal and treatable), but the doctor told us the same old story: he feels feverish but he doesn't have much of a fever, his throat hurts horribly but it doesn't look too bad, no sign of an infection or other reason for his feeling so horrible. Sound familiar? It was clearly a crash brought on by last week's over-ambitious activities.

We did get some hopeful news. I explained Craig's situation to Dr. Rowe, the pioneering doctor at Johns Hopkins who first identified Orthostatic Intolerance in people with CFIDS. As in the past, he responded quickly and thoroughly to my e-mail. He thinks Craig's chest pains are related to OI and that treatment might help. So, the bad news is that it's probably time to get Craig officially diagnosed (at least with OI), but the good news is that we may be able to help him feel better. Who knows - maybe early treatment of the OI will prevent or slow the typical downward spiral of dysfunctional systems in CFIDS.

I'm very grateful that tomorrow is Friday, and this same old week is almost over. I'm ready to start fresh and feel better.


Meg said...

Hi Sue,

I've just recently come across your blog. I have ME/CFS and I have only myself to get ready in the morning, as I have no children. It must be very difficult to also have a son who is as badly affected. I'm so sorry to hear that. Its a drag isn't it; you do one or 2 things and you feel happy only to be exhausted the next day and the day after that! I'm starting back at work this week on a phased return. I've not worked since last June, so it will be a struggle! I'll come back some more as I'm enjoying reading your words.

Take care, Sue!

Sue Jackson said...

Thanks, Meg, for your kind words and commiseration. Yes, I do get sick of this rollercoaster that we live with. Good luck with starting back to work. I hope that means you've improved somewhat!