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.

Shipwrecked!

Might as well continue with the water analogies. I don't even have the energy today to tread water. I crashed big-time last night. Horribly sore throat, aches from head to toe, feels like my body is filled with wet cement.

Too much computer time yesterday? My little walk around the neighborhood? A delayed reaction to all the stress lately? I haven't felt this bad in quite awhile. Even using the laptop in the recliner is too much for today. It's a flat day.

Crahes are frustrating because there's so little you can do to help yourself. There's no way out but through it. Rest and wait...

Swimming Again

Craig finally turned the corner last night and went back to school this morning, so our lives are returning to some semblance of normal today. I probably overdid already today; I've just been so thrilled to have time to myself again! I've been writing all day and even took a short walk (I'm in love with grocery delivery - I can save my energy for real exercise).

I realized that I was so distraught yesterday I didn't even write about how I had titled my blog entry. My sensation of just "treading water" doesn't apply only to Craig's illness this week but to so many aspects of our lives whenever one of us is ill or crashed. It's as if the rest of the world carries on without us while we're stuck in another dimension.

I feel as if I accomplished nothing in the past 8 days. I know, in reality, that I did a lot - taking care of Craig, going to the doctor's office, helping him with schoolwork, etc. But none of that was what I had planned to do. I ignored my writing, my friends, and everything that needed to be done with respect to our house, our yard, and our finances. My world shrunk down to a tiny space.

When this happens, it's suffocating. I feel a sense of panic as the days pass and nothing gets done. We move into a kind of survival mode, just managing to do what we need to get through each day. Life is reduced to meeting our basic needs - food and rest (fortunately shelter is taken care of). It's hard to live like that for very long.

So, I'm happy to be back to living a more normal life today. We just do what we have to do to get through these tough periods, right?

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.

Thrill of Victory & Agony of Defeat

Whew, the past few weeks have been a whirlwind of activity. If I complained about summer vacation in the past two months, I take it all back! I had forgotten how hectic weekdays and evenings are during the school year.

In the midst of all this chaos - and my own mild crashes that have resulted - one thing stands out, making everything else seem trivial. Jamie, our 12-year old son who spent much of the past two years flat on his back because of CFIDS, is going to school full-time, back in band playing his saxophone, and playing his favorite sport, soccer. In other words, he's just like any other seventh-grader.

I can't begin to express the depth of our relief and gratitude. Watching Jamie go off to school each morning is a miracle. The real test came last week, when soccer season started. Jamie has played - and loved - soccer since he was 4 years old. At this time last year, he was unable to attend any team practices and was absent from school more than 50% of the time. We'd go to the soccer games each Saturday, and Ken (my husband and the coach) would put Jamie in for 5 minutes , usually as goalie so he wouldn't have to run much. Five minutes was all he could handle before he had to come out and rest again. Even that little bit sometimes caused a crash.

This past Saturday, Jamie was out there, running as hard as he could for most of the hour-long game. He'd been to two 90-minute practices during the week. He ran and kicked and even scored a goal for his team. (That's Jamie in the blue shorts and socks). I was terrified of the consequences and watched him carefully the next day for signs of a crash....nothing. It's astounding. Thank goodness for Dr. Bell, Dr. Rowe, and Florinef.

So, that's the thrill of victory. And it sure is sweet, but it's tempered by the agony of defeat. Our younger son, Craig, also went back to school (third grade) and started soccer last weekend. Craig loves soccer as much as Jamie does. After almost two hours on the soccer field Friday evening (he stayed for his own and for Jamie's practice) and his game on Saturday morning, he crashed big-time. (That's Craig fighting for the ball, in the red shorts. He also scored a goal at his game.)

When Craig said "My throat hurts so bad!" on Saturday evening, my heart sunk. He's been home from school for two days now, with the too-familiar symptoms in the same old pattern - first a sore throat, then congestion, then exhaustion and all-over aches. He's lying on the couch this morning and says, "I feel so weak I can't even sit up." Now it's very likely he'll also develop a sinus infection - typical for him when the congestion gets this bad. Seeing Craig suffering hurts with the same intensity as the joy I feel in Jamie's recovery.

This disease sucks.