Tuesday, February 28, 2006

Weekend On the Road

We drove to Connecticut this weekend for my niece's 4th birthday and to meet my newborn nephew. I was very excited to see the new baby but was dreading the effect that the busy weekend would probably have on me. My stamina has been especially low lately - probably because I haven't had enough time to recover between big events like the holidays, my son's birthday, and Mardi Gras - and I knew I wasn't really up to traveling.

The weekend started out worse than I had even expected, though. We left at about 2:30 pm Friday. By the time we arrived at my mother's house 4 hours later (bad traffic), I had crashed. I hurt all over, felt completely exhausted even after a nap, and had a sore throat - a sure sign of a severe crash. I was perplexed by what had caused the crash, but I think it was just the combination of rushing around to get packed and a quick trip to the store that morning for a baby gift. That's all it took.

My mother and her husband welcomed us, but I felt so bad I could barely manage to speak. I felt like I was in a fog all through dinner. Much of my extended family has had trouble acknowledging and accepting the severity of my illness. This has caused a great gulf between me and many family members, especially my mother. I try to guess at her feelings, as well as those of other family members, but no one will talk to me openly about what has happened to me. I worry excessively (maybe obsessively is more accurate) about what they think and whether they understand how much I'm suffering. Certainly, no one can truly understand the impact of this debilitating illness unless they live with it. I think that it's been even harder for my family since none of them live close by, and we only see each other for brief periods of time. I think that sometimes they think I'm either exaggerating my symptoms or using my illness as an excuse. I know that, at times, my mother has interpreted my illness as depression, mistaking my inability to interact normally as a personal affront. The truth is that sometimes I'm just too sick to even try to act "normal."

So all of these complicated feelings were at play as I struggled Friday evening with my worsening symptoms. I went to bed soon after my boys did, in the hopes that a good night's sleep would help. Of course, a good night's sleep in the midst of a crash is impossible, and I woke feeling even worse.

We drove to my sister's house, and I tried to nap in the car (didn't work very well). I took another nap after we arrived, then rallied myself to try to attend a bit of my niece's birthday party. It was held at one of those huge, noisy indoor play places. The noise, crowds, and frantic activity were overwhelming. I can't imagine what my sister's friends thought as I huddled in a corner, unable to talk or interact with anyone. Fortunately, my crash began to lift by the end of the party. Even with my poor stamina lately, my most severe crash symptoms don't last as long as they used to.

And maybe it helped to hold my newborn nephew in my arms in a quiet room while everyone else looked after the crowd of 4-year olds running and screaming through the play area. I fell in love with him, so tiny and perfect. Just holding him made me feel serene.

I did a little better on Sunday but still used up all of my energy by mid-morning. Traveling is so hard on me now. I feel like a little old lady who can't sleep away from home. I need my predictable, daily routine in order to be able to function. I was literally counting the hours until I would be back at home, lying down on my own couch in a quiet room. We packed up the car and said good-bye. I knew the next 5 hours would be difficult, but the end was in sight. Then, as we were pulling out of the driveway, we noticed a puddle of anti-freeze under our truck. Our water pump had broken. As we got back out of the car and began making calls to find a garage open on a Sunday, I lost it. I just broke into sobs, feeling silly for losing control over something so minor but unable to stop myself. I needed to be home.

We finally got the truck repaired and got back home Monday afternoon. It's difficult and depressing to be at the mercy of this illness, to feel so helpless against it and so unable to cope. I loved holding my new nephew, but it's so unfair that a simple weekend trip could so totally knock me out.

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