Flexibility & Giving In

I woke up this morning - after grocery shopping and dinner with friends yesterday - feeling exhausted and achy, with a bit of a sore throat. Still, I didn't want to give up on my plans for today. I had planned to go see a local photography exhibit with two friends and then have lunch. It's extremely rare that I do something like that, it fits with my new determination to have more fun, and I was just really looking forward to it. I tried an early morning nap, after I got Craig off to school, but I knew when I got up again that I really shouldn't go anywhere.

So, reluctantly, I let my friends know I'd have to cancel (I'm blessed with such understanding friends!), and I gave into the mild crash and camped out on the couch for the rest of the morning.

Flexibility is so important to managing CFS, but it took me such a long time to accept that. It's still so hard to get past thoughts of "but I HAVE to do that," and change my plans like I did today. Sometimes it's as trivial as a trip to the grocery store, but my husband always reminds me he can stop to pick up food. Sometimes, like today, it's something I want to do, plus I don't want to disappoint other people. But living with CFS means I (we) have to stay flexible. Last year at this time, we were ready to drive to Connecticut for my niece and nephew's birthdays, like we do every year. Jamie had been horribly sick all week, but we were still stuck in that mindset of "we HAVE to go." Finally, at 5 pm on Friday, with the car fully packed, Ken and I decided we needed to stay home. It was the right decision - Jamie continued to feel bad until Sunday - but it was so hard to make.

So, today I was rather proud of myself. I made the hard decision. Then, I did something else that's hard for me to do. I completely gave in to the need to rest and took the day off. I grabbed a warm quilt, a cup of tea, and my book and just allowed myself to relax. I ate comfort foods and watched an old movie with my lunch, then took my nap. Usually, even when I know I need to rest, I fight against it, still trying to do something productive from the couch or the recliner, still worrying about the to-do list.

So today I did the right thing, and I'm feeling a bit better this afternoon. I am hoping to go to my neighborhood book group tonight, after more rest time on the couch (I still have to finish the book anyway!) We'll see. As with so many aspects of CFS, these are lessons I seem to keep re-learning over and over, but today I'm glad I listened to that little voice inside telling me to rest.

Happy Mardi Gras 2009!

Happy Mardi Gras Day! I hope you're all wearing green, purple, and gold today. I'm listening to NOLA's Mardi Gras Radio as I type this.

I'm happy to report that our Mardi Gras party was a big success on Saturday. Everyone had a good time, I actually enjoyed myself, and by dinnertime on Sunday, I was feeling pretty good again!

We had jambalya, red beans and rice, and shrimp, followed by bread pudding with whiskey sauce and King Cake for dessert. We had about 18 adults (though 4 came late just for dessert) and 6 kids - our biggest party since CFS! I felt pretty good all evening - never even had that weird, brain foggy-experience where you feel like you're in a different world than everyone else. I was careful to sit, not stand, most of the time, but I did it!

Of course, it really stinks that I can no longer drink, but I still wake up feeling hung over! I was exhausted Sunday morning and went back to bed for my nap before noon, but after that, I felt pretty good again. We were all up until midnight, but the boys recovered well, too, and were both able to go to school on Monday. Here they are eating King Cake with their friends; the kids ate a whole cake by themselves! So, a big success and lots of fun.

Tonight, as per tradition, we're going to our friends' house for dinner. They lived in New Orleans the same time we did, and since moving to Delaware, we always eat Popeye's at their house on Mardi Gras day.

Happy Mardi Gras! Do something to celebrate and have a little fun today!

Party Preparations

It's been a busy week! Both boys took turns being home sick with that respiratory virus I had recently, plus we've been very busy getting ready for our annual Mardi Gras party this weekend.

We used to live in New Orleans, and we began a tradition of having a Mardi Gras party when we moved here to Delaware. It eventually grew into a HUGE thing with 50-60 people, large amounts of food and beer, and a very late night.

Post-CFS, the Mardi Gras party tradition continues but as a quieter, more reasonable affair. We've actually got a pretty big crowd coming this year - about 20 including kids - bigger than in recent years. I was a little worried about that, but I think I'll be OK and I'm relieved that the kids are both feeling better. My wonderful friends have all offered to help, I made the red beans last week and froze them, and I picked up the King Cakes today (yes, there is 1 bakery in Delaware that makes them!).

Tomorrow morning I'll make the jambalya, then just rest up for the party. The boys love to handle the decorations (I'll post pictures next week - this one is from '06), and Ken will run some last-minute errands. Pacing and lots of help! Being able to still hold up this tradition (in a modified form) really makes me feel good - I'm looking forward to having our friends over tomorrow.

Check out NOLA.com for full Mardi Gras coverage and live webcams of the parades this weekend through Tuesday! And, for a real treat, order some Zapp's potato chips - the cajun crawtator and cajun dill are the best flavors!

And if you're interested in reading about New Orleans, check out the link at my latest book blog posting - this book sounds wonderful. (plus, I posted a new book review yesterday)

Enjoy your weekend and Laissez Les Bon Temps Roulez! (aka Let the good times roll)

Good-bye, Lyme Disease!

I drove to NJ today to see the Lyme specialist again. I've now been on the double-dose of antibiotics for 10 weeks (plus 2 months before that off and on a regular dose) and haven't had any Lyme symptoms since about 8 weeks ago.

He thinks I'm cured!

The guideline is to stay on antibiotics until 6-8 weeks with no symptoms, so he says I can go off the medication now, and we'll see what happens. I only have 5 days' of pills left, so I'll probably finish them, just to be safe. Back in the fall, I was at this point (symptom-free), went off the antibiotics too soon, and my symptoms came back, but I think this latest round did the trick.

Too soon to celebrate yet - until I'm off the antibiotics for good - but this is very good promising news!

Post-Weekend Rest

I made a decision to just rest today and not even attempt any work after our weekend of traveling to see family. I caught a mild stomach virus from my little nephew, so I needed to just take it easy today.

We drove to Connecticut for my niece and nephew's birthdays (they were turning 7 and 3, respectively). It was very nice to see everyone, and I actually did quite well this weekend (until last night). My 11-year old son, Craig, didn't fare so well. He woke up vomiting at midnight Friday night at my Mom's house - his fourth stomach virus since Thanksgiving! My poor husband spent yet another night sleeping on the floor of a relative's house next to him.

Craig was doing better after napping on the way to my sister's house Saturday, so he was able to enjoy his cousins' pool party, but by evening he felt rotten again. By then, my sister realized that my nephew was sick, too. He had a 101 fever and was still running around playing! Ah, to be 3 again...

By Sunday, Craig had developed the same upper respiratory infection Jamie and I had the past two weeks, and by Sunday night, he and I both had stomach cramps and....I'll spare you the rest of the details!

Despite all of that, I'm glad we went. It brings me such joy to spend time with my niece and nephew. My nephew, in particular at this age, is so full of joy and excitement! He was so happy to have all of us there and is such a sweet and loving (and highly energetic!) child. And guess what song he was singing at full volume - with dance moves - all weekend? "I Like to Move It, Move It" from Madagascar! He must have been reading my blog last week.

Working Hard

I've been feeling very good this week and have been able to work on several writing goals, so I thought I'd share some of my latest work with you (don't worry - I'm taking time out for fun, too!)

• I've launched a new book review website, Great Books for Kids and Teens. I plan to post new reviews to it at least once or twice a week, so please tell the young people in your life!
• I added a new book review to my grown-up book blog, Book By Book, too.
• I updated my writer's website, including my page on CFS (though there's still more I'd like to do with this page).
  
• I discovered that an article I wrote on CFS appeared on the Lively Women website last fall (somehow I missed it!)
• And I pitched a brief CFS article to a major women's magazine. I'm hoping to expand my freelance writing into health, especially CFS. I'll let you know how it goes!
  

And She'll Have Fun, Fun, Fun....

It's time for a new attitude! I need to get back to focusing on what I CAN do, instead of what I CAN'T do.

I really appreciated all of the great comments you've left on my last blog entry, about having fun. And reading all of them made me realize something. I don't think that having CFS is really my biggest problem when it comes to not having enough fun. My problem is the same as it was before I got CFS: I feel like I should always be doing something productive. So, when I have unstructured time, like on the weekends, I'm always trying to cross items off my to-do list, instead of just relaxing. I feel guilty if I'm not accomplishing something. CFS has actually helped me in this respect; I now accept that there are times when I need to just rest and do nothing. But I still have trouble relaxing if I'm feeling well. And isn't that just silly? Baby Blues, my favorite cartoon, says it best. Maybe this is something all Moms struggle with:



So, I am recommitting myself to my goal of making time for fun each day. And, since I often don't know what to do, if I'm not working down that to-do list, here is my list of FUN things I can do:

• Take a short, easy walk, alone or with friends or family
• Play a game with my kids
• Read for fun (not just at naptime or bedtime)
• Watch a movie or a favorite TV show
• Work on a jigsaw puzzle
• Do a crossword puzzle
• Play a computer game
• Call a friend, just to chat, without a purpose
• Invite friends over for take-out or lunch or dessert
• Meet a friend for lunch
• Browse the sales racks at a favorite store, when there's nothing I need
• Sit on the deck with a book when the weather is nice
• Go out to dinner with Ken
• Play with iTunes and discover new music
• Take a short hike at a local park

So, last evening, instead of burying myself in my laptop as usual, I played games with Craig (pick-up sticks, Pay Day, and Jenga) and worked on a puzzle with Ken. And I had fun!

I know, I know. It's pretty sad that I need to make a list in order to have more fun, but it's progress for list-addicted, over-achieving me! Baby steps.

Girls Just Wanna Have Fun

One of my goals for this year was to make more time for fun, but I don't think I'm doing a very good job at that so far. I'm kind of weary of my weekend routine.

We tend to be very kid-centered: our kids have lots of fun on the weekends! They're at an age when they want to spend a lot of time with friends, so when the weekend comes, we drive them to various events and (more often) host their friends at our house to play or spend the night. Believe me, I'm grateful that they are now well enough to have such active social lives, and I've always been happy that they like to have their friends at our house. I just think that maybe I'm losing sight of my own needs.

During the week, I have a routine that works very well for me. As long as both boys are well, everyone is out of the house by 8:15 am, and I have a full four hours of productive time before I have to stop for lunch and a nap. As you know, four hours of productive time is amazing for someone with CFS! Even if I'm not feeling well, I can usually still lie on the couch and catch up on reading, keeping a list of what I'll do when I'm upright again.

On weekends, my time is compressed. I stay up later with my husband, watching a movie or favorite TV shows that we taped during the week (since we go to bed at 9:30 most weeknights!), so I need to sleep later in order to get my required minimum of 9 hours of sleep. Then I make a big breakfast. It seems like just a couple of hours later, it's already time for my nap. Once I get up, it's time to start making dinner. So, my weekends feel full of just rest and cooking.

Complicating matters is, as always, CFS. We start with fewer hours in a day than healthy people. When I think of what I'd like to do on weekends, my top choices are things I really can't do - take a hike with the family, do something active outdoors, even going to the movie theater (a rare treat) is tiring and difficult to schedule around my rest time and my need to eat at regular intervals to stave off low blood sugar. I'd also like to have friends over more often, but I need to be in tip-top shape for that kind of exertion.

Somehow, though, I need to make more time for fun for myself. I guess that won't be a problem for the next two weeks because we have full weekends coming up, with travel to see family and our annual Mardi Gras party (I have my fingers crossed I'll be in good shape for it!).

So, what's a girl with CFS to do? How do you have fun?

I Like to Move It, Move It!

(I just love that song from the movie Madagascar!)

I'm feeling better and getting caught up after my week-long crash. Just some mild congestion left, but my energy is back. I even went skiing today! Now don't get too excited. By "skiing", I mean that I wiped the cobwebs off my cross-country skiis and boots, strapped them on, and took a few laps around my house in the quarter-inch of snow left from yesterday. I can't imagine what my neighbors must think!

Those 10 minutes of skiing left me out of breath (though happy!) and worrying that I might have done too much. How crazy is that?

Before you knew about CFS, would you ever have believed there was an illness that made exercise BAD for you? I wouldn't have. It's just surreal sometimes, isn't it? We're surrounded with advice and admonitions - from TV, magazines, the internet - that we have to exercise more in order to be healthy. Not a day goes by that I don't read or hear of another benefit of exercise. It just seems insane to me that something that is so good for the rest of the population can make me so sick. My mom was telling me this weekend that one of the reasons she loves her Jazzercize class is because being with other people motivates her to work harder and helps to get her heart rate higher. I said, "That's exactly why I can't go to a class!" We laughed, but it's absurd, isn't it?

For me, the exercise intolerance is at the heart of CFS. It is the single aspect of this complex illness that affects my life more than any other (I'm very fortunate to experience almost no cognitive dysfunction). Before I had CFS, I was very active and LOVED to exercise - hiking, biking, aerobics classes, dancing, weight training...I loved it all! I loved the feeling of moving my body, breathing deeply, feeling alive. I miss that so much. When I daydream of being well again, that's what I think about - all the active things I want to do.

I'm grateful that, on a good day, I can take a slow walk or do 30 minutes of gentle yoga, but I yearn to move without limits again. The toughest part is that the response to exercise is delayed. I could do much more - and enjoy it! - but then I'd be flat on my back for a day or two (or more). It is so hard to hold myself back on days when I feel good.

I just keep hoping that some CFS researcher is going to discover the secret behind exercise intolerance and how to treat it. Maybe? Someday?

Very Sick

I've been very sick all weekend. It seems that I actually caught a cold (or some sort of virus). That's rare for me. Usually my over-active immune system responds to viruses with a brief crash, but I don't actually catch anything. This is a bad one, though. I've got some pretty heavy congestion, especially in my chest. I'm worried about bronchitis, but this mega-dose of antibiotics I'm still on for Lyme should protect me - I hope.

My Mom and her husband were here for the weekend, and we had a fun Superbowl celebration last night. I had to spend most of the weekend resting, and I still felt terrible - just completely exhausted, plus the congestion and cough. I did manage to play PIT with the family Saturday evening and a game of Scrabble with Jamie and my Mom on Sunday, but even that wore me out. They left this morning, and I have pledged to spend all day on the couch today resting. In fact, that's it for computer time for me today - time to put the laptop away.

Rest, rest, rest.