Monday, February 20, 2006

Happy Mardi Gras!

My husband and I used to live in New Orleans, so we still consider Mardi Gras season a major holiday. We had our annual Mardi Gras party this weekend. Like the residents of New Orleans recovering from Hurricane Katrina, we've had to settle for an abbreviated Mardi Gras celebration in the wake of my illness.

When we moved to Delaware in 1990, we sorely missed New Orleans and began an annual tradition of hosting a Mardi Gras party for our friends. Over the years, our party grew to monster proportions, with over 50 people attending by 2000. I became suddenly ill in March 2002 (after Mardi Gras had passed, thankfully). A year later, as our favorite holiday rolled around again, I still had no idea what was wrong with me, but I was determined not to let it get in the way of our party. I ignored my symptoms and pushed myself through the hard work of preparing for our big bash. I barely remember the party that year. By the time our guests began arriving, I was in a haze of pain and disorientation. The exertion of the past days, combined with the noise and the crowd, left me feeling lost in a fog. I spent the next two months in a severe crash, the worst I'd yet experienced. It was during that low point that I was finally diagnosed with CFIDS.

My husband and I were unwilling to completely give up our Mardi Gras tradition, but the following year we curtailed it back to a manageable scope. We explained to a lot of disappointed friends and colleagues that we had to give up on the big bash, and we invited just a few close friends. For the first time, I accepted my friends' offers to help with food and preparation.

So, we had our annual party this weekend with a small group of close friends. I settled into my spot on the couch, with my feet elevated, for most of the party. I did allow myself a beer for the occasion (we had some Abita, a delicious microbrew from Louisiana), but I drank only about a quarter of it over the course of 3 hours! We enjoyed the company of our friends and the food, although I had to skip the bread pudding with whiskey sauce since I can't tolerate either milk or alcohol.

Still, despite all of our scaling back, I woke on Sunday morning feeling terrible. How sad that I can no longer enjoy a few beers but still feel like I've got the world's worst hang-over! I hurt all over, as if I'd run a marathon (and maybe been hit by a truck, too), slept poorly in spite of Ambien, and felt exhausted. I expected this, though, and settled in for a few days of rest and taking it easy. Those days of recovery are as much a part of the party for me now as the preparations: pick up the shrimp, make a pot of jambalya, order King Cakes, and plan on a few days on the couch afterward.

I realized this weekend that our approach to our beloved party is an illustration of my overall attitude toward living with CFIDS. I've learned (the hard way) that I can't ignore my limits or push past them without severe consequences. I've had to give up many things I used to enjoy and scale back others. My life these days is very different than it was before I got sick, but it's still my life. I've adapted to my limitations, and I try to make the best of what I have to work with. Sometimes, as with our Mardi Gras party, I make a conscious decision to go outside my limits and I know to expect a crash. I've tried hard not to let CFIDS define me. I'm still me. I may not be able to party like I used to, but I can still maintain that party spirit and enjoy the company of my friends.

So, in that spirit, here are some ways to enjoy Mardi Gras, in spite of CFIDS:

- See live webcams and videos of the parades and other festivities in New Orleans at
- Order spicy Louisiana potato chips from Zapp's (all that salt is actually good for you when you have orthostatic intolerance!) Our favorites are the Cajun Crawtators and Cajun Dill chips at (or 1-800-HOT-CHIP)
- Order a Mardi Gras King Cake from Gambino's Bakery in New Orleans: or look through your yellow pages to find a local bakery that makes King Cakes (we even found one in Delaware)

Happy Mardi Gras!

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