Monday, August 20, 2012

No Vacations From Chronic Illness

Duncan, the founder/creator of the Patients For A Moment blog carnival, is hosting this month's edition, which focuses on how people with chronic illness or chronic pain travel. It's a really good edition, and you can read it here.

I used to love to travel, whether it was a 150-mile-each-way trip to meet a friend for lunch or flying cross country for a three-day weekend at a science fiction convention or a fabulous vacation in Hawaii.

So it makes me a bit sad to find excuses for why I don't visit non-local friends anymore. The fact is, I just don't travel well these days. I don't even do well traveling locally. By the time we get where we're going, I'm exhausted and ready to be done.

It's hard, but that's life, right?

When we do travel, I find it helps to manage expectations: My own, my family's (i.e. Scott & Ellie) and the expectations of anyone we might be visiting. The first two are far easier than the third.

Our trip to Disneyland in 2010 worked surprisingly well, as long as I didn't dwell on what I was missing out on because I needed to spend most of my time in our hotel room sleeping or resting. It was a huge help that there was somewhere for Scott & Ellie to go as soon as they woke up so I didn't have to try to rest with them in the hotel room making noise. And unlike trips to visit my family in Chicago or Scott's family in central Washington, we didn't have to take anyone else's schedule or preferences into consideration.

We have hopes of doing more travel -- a family trip to Nationals next July in Albuquerque, where Scott's younger sister lives, maybe even a trip to Disneyland too. And there's the ever-present, self-inflicted pressure on the importance of making it possible for Ellie to spend time with extended family, none of whom live locally.

Pretty much the only constant is the need to have flexibility and remember to slow down my schedule despite any pressure (internal or external) to do otherwise. Because, of course, my chronic illnesses follow me wherever I go. 

Monday, August 6, 2012

I Hate Nietzsche

I do, I really hate Nietzche.

Or maybe I just hate it when people quote him, particularly the "That which does not kill you makes you stronger" quote (which apparently is not really a true quote but a summarization, according to Wikipedia).

If it's true and not simply a cliche, I'm apparently stronger now. After all, I survived "Girls Week."

"Girls Week" is what Ellie labeled the week that Scott was at the USA Roller Sports 2012 National Figure Championship since we were staying home while he was in Lincoln, Nebraska. (He made his coaches -- and us -- proud!)

Ellie went to all-day camp each day, which is probably how I survived. :)

But oh, my days shrunk.

They shrunk to the point where I was getting up at 7 a.m. to get Ellie ready for camp, including making her lunches and breakfasts, and dropping her off around 8:30 a.m. Then I'd come home and crawl into bed and sleep until 3ish. Pickup was around 5 p.m. (That was pretty much the routine all week except for Monday, when the cleaners came and the timing was such that there wasn't time for me to sleep either before or after they came without risk of sleeping through an alarm clock.)

Evenings were exhausting, even though Ellie was at her easiest and most helpful. We watched a lot more TV than normal (including The Princess Bride and Mary Poppins, two fabulous classics I'm thrilled to have introduced Ellie to!).

Of course, exhaustion snowballs, so as Friday approached, I was feeling like I was hanging on by my fingernails. And I was terrified that Scott's flight would be canceled due to weather. (Several of our friends who were trying to leave Lincoln earlier in the week had their flights canceled for a couple days due to weather first in Denver and then in Lincoln.) But it all went as planned and he got home in the wee hours Saturday.

I made it through, and Ellie is happy about how it all went, so in the end, I guess that's all that matters, right?

Am I stronger for having survived the week? No. I don't think so. But perhaps the thought of Scott going on a business trip (or to Nationals again) won't terrify me quite so much as this one did. And that's definitely something.