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.
End the R-Word! - I pledge #Respect thru my words & actions. Will you? Pledge now to create communities of inclusion for people with Intellectual Disabilities http://r-word...
5 days ago