I've been meaning to post about good intentions gone awry, but I'll get to that later.
When I saw the call go out for submissions to the Patients For A Moment blog carnival on the topic of travel, I knew it was something I wanted to write about. But since I feel like I'm chest deep in quick sand and not getting much of anything accomplished, I missed the deadline. You can check out the blog carnival over at the Oh My Aches and Pains blog. (There's some amazingly good posts included. Please go take a look!)
But I thought I'd still take a stab at it even if I didn't make it into PFAM.
Travel has played a huge role in my mystery illness. From the start of my illness, which kicked in literally overnight before the day I was supposed to fly to Chicago for my niece's 2007 high school graduation.
Then, a month later, we made our usual trip to visit my husband's parents over the Fourth of July weekend, which coincidentally is Scott's birthday. I rationalized that it was no big deal -- I mean, what's the difference between lying on someone else's couch than lying on mine. Boy was I wrong about that! I came home sicker than I left, and ended up getting admitted to the hospital from the emergency room a few days later. (Spent 8 days having a vast variety of tests done before they decided that whatever I had, it wasn't going to kill me anytime soon and sent me home in way worse condition than they admitted me.)
With my immediate family 1800 miles away in Chicago, and Scott's parents 250 miles away (which takes about the same amount to drive as it does to fly to Chicago -- which I always find somewhat ironic) and Scott's extended family in Iowa, there's a lot of guilt about not getting Ellie to visit family.
We really wanted Ellie to visit Disneyland while she was young enough to be princess obsessed and believe in magic. The original plan had been to take her as soon as she was potty trained. But we kept waiting for me to feel better.
Earlier this spring, we realized that this was our last chance to be able to take her to Disneyland during an off-season time to avoid the crowds. It's no big deal to miss a few days of preschool, but there's pressure not to pull kids out of school, even kindergarten.
I really wanted Ellie to have that Disneyland experience. But after that 2007 trip that landed me in the hospital, I was really scared of even trying it. And yet, when I thought about sending Scott and Ellie alone, it made me really sad to think I was going to miss out completely on watching her experience the magic of Disney.
Finally, I convinced myself (with encouragement from Scott) to go ahead and try it. We decided to stay on the resort (the Grand Californian is amazing!), and figured I'd do what I could and nap in the room the rest of the time. I looked into buying a shorter length park hopper ticket for myself since we were staying five nights, but it turned out that once you buy a three-day ticket, it's not much more to buy a six-day ticket. So I did, and with a lot of anxiety on my part, we went to Disneyland April 22-27.
I spent a lot of time napping in our room. I essentially managed to meet them for a meal a day and a little bit of the parks. I discovered that 90 minutes was a hard limit for me, and I'd need major downtime. And even for those 90 minutes, I was pretty much a zombie. I had to tell Scott to keep as close an eye on me as he did on Ellie because I was so exhausted I had little to no memory.
I lost our camera on our first visit to California Adventure, the night we arrived and had reservations at Ariel's Grotto. After dinner, I'd taken a photo of Scott and Ellie and then needed sit on a bench for a while for a breather. When we started back to the hotel, Scott wanted to take a photo of a water wheel. I said, "Fine. I'm just going to sit down again." But it turned out I hadn't given the camera back to him and, best we can figure, had left it on the bench by Ariel's Grotto where I'd sat down. He went running back there, but it was already gone. We got directed to the lost and found but weren't really feeling too optimistic. Ellie and I went back to the hotel, which was closer than the lost and found, and Scott went off in hopes of retrieving our camera. He got sent to a couple different places, but at the main lost & found for the both parks, he got lucky. He told the castmember working there, "I believe in magic!" and sure enough, she pulled out our camera. It helped that he could say that the last photo taken as of him and his daughter since most of the other photos were of Ellie alone or with a character.
It wasn't the kind of Disneyland trip Scott and I used to take back in our pre-Ellie days. (Although even in those days, I liked to go back to the hotel for the heat of the afternoon and nap!) And I think I have to credit Elizabeth McClung over at Screw Bronze, who inspired me to to be a part of making memories with Ellie. She's all about pushing the limits of her illness, and it's amazing what she's been able to do.
Even though I look at the bulk of the photos Scott took and wonder, "Where was I when they were doing that?", I'm happy I was there to see as much as I could manage, which was more than I expected but less than I wanted. (Talk about a run-on sentence. Sorry about that. I'm tired and my brain is already faded.)
I'm glad I went along to Disneyland with my family. But even still, there's a part of me that wonders, since I'm still paying for it physically over a month later, was it really worth this much pain and fatigue?
Then I look at the photos, and yeah, I'm glad I went. Even if I wasn't there for all the wonder and magic, it was better to be there for some of it than miss all of it.
Extreme Fatigue - Exhaustion. Fatigue. Lethargy. Weariness. It's so much more than just being tired... And it hasn't been this bad in a very long time... it's so intens...
4 months ago