I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
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Monday, November 02, 2009
Victory!!
I did it - I survived and, yes, even enjoyed my big weekend!
I was still severely ill on Thursday and Friday, with horrible aches, so I spent most of Friday in bed, took two long naps, and started to finally perk up a bit Friday evening, in time to supervise pumpkin carving.
I was able to watch Jamie's soccer game Saturday morning, then came home to rest up for Halloween night. Remember how upset I was that I hadn't been able to work on costumes? Well, Jamie came through with a very creative idea, and Ken and my mom shopped for supplies. We dressed up as the characters from the Where's Waldo? books! Jamie was Waldo, I was Wenda, Ken was Odlaw, and Craig - who likes to do his own thing - came up with an awesome old man costume. My mom and her husband dressed up as Indians. I even managed to go to a few houses on our cul-de-sac with my family and the boys' friends before heading back home to hand out candy.
Jamie and his friend rushed back to the house, showered, changed into dress clothes, and went to their Homecoming Dance! They had a great time and are looking so grown-up now.
On Sunday, the boys in the family headed to NJ for a Jets game, and my mom and I went to New York. Ironically, yesterday was the New York City Marathon, and I ran my own CFS-style marathon in New York! My mom and I went to see Mamma Mia! on Broadway. What a fabulous, happy, upbeat show! Everything about it was wonderful - the cast, the music, the dancing, the costumes, the storyline. And we also enjoyed some excellent food. We had lunch at a little French bistro called Tout Va Bien, and I finally got to try the homemade table-side created guacamole at Rosa Mexicano for dinner. When I finally got on my (late) train to head home, I was stuffed and exhausted - I really did feel as if I'd run a marathon. A couple days ago, I was really sick of lying in bed, but it felt like heaven last night!
I'm back on the couch today, but I feel like I earned it this time. My mom was so worried about me last night - we ended up walking more then we intended because a lot of roads were closed for the marathon, so cabs weren't always possible. But I explained to her that this was a choice I had made, that I knew it would likely result in feeling bad the next day, but the joy and wonderful escape she gave me were well worth it.
Amazingly, Jamie and Craig both made it through their own marathon weekends and are at school today. All in all, a wonderful, victorious weekend!
Wow! and Wow again...It is great you were all able to follow through with plans, have a good time and manage everything. The play sounds fun! I like your quote in yesterday's post.
ReplyDeleteWhoohoo! Congratulations! It sounds like a great weekend and I LOVE the costumes. Doesn't it just kill you when the kids look all grown up?
ReplyDeleteRest up now,
Lori
There is such a difference, isn't there, to days on the couch we feel we've 'earned'? I'm so glad your weekend went well!
ReplyDeleteYou did indeed run your own marathon. I'm so glad you got to go to NYC and to Mamma Mia. All I can say is Mamma Mia!!
ReplyDeleteHuzzah!
ReplyDeleteI'll just echo everyone else and say HOORAY! :-)
ReplyDeleteWell done, Sue! You survived a busy weekend, and I hope you enjoy your much-deserved "bust" period...
ReplyDeleteHalloween totally passed me by this year. C'est la vie...2010 is another year.
Sam
Sue, Love the photo (great costumes) and feeling your joy eminate through this post at being able to participate with your family in all the fun.
ReplyDeleteThere is definately a silver-lining in living with CFS...the happiness that come when we are able to participate in what is important to us in life.
Your family sounds like an awesome group of people. Understand so well how worth it is the crash that follows such a dive into the joys of life.
I'm adding a wow, too!! And to go into NYC is a trip even when you're healthy...AND to see Mamma Mia, my fav movie! Wow again!
ReplyDeleteHow far can you walk on good days? I'm curious since I can maybe get the equivalent of half of a short block.
Well, Pris, there are two answers to that question...How far can I walk on a good day vs. how far can I walk without crashing the next day? Two very different answers! I felt crummy Monday, a little better Tuesday and went to the grocery store, and now I'm back to severely crashed.
ReplyDeleteAt my best, last year before Lyme, and briefly at the end of this summer before this major crash, I could walk for maybe 30-45 minutes at a time (watching to be sure my heart rate didn't go up too much) with only a minor worsening the next day.
Until this nasty period this fall, I could often manage a walk around my neighborhood (a very hilly almost-mile).
Of course, all of this depends on what else I'm doing. If I have to go to the grocery store, I can't also take a walk the same day.
I'm definitely paying big-time for all that walking in NY on Sunday!
Sue