We had a great weekend in Baltimore, and I promise to upload some pictures soon. I just wanted to post a quick update on how we fared after our big weekend.
I walked more this weekend than I normally would in a month! We spent lots of time strolling around Inner Harbor, plus touring the U.S.S. Constellation (a Civil War-era ship in the harbor) and the National Aquarium. Not all that exerting but the worst kind of activity for someone with CFS - lots of time on our feet. We also spent two hours in our dark, quiet hotel room on Saturday, resting in between activities, so that helped all of us.
Craig came through the weekend with no problem at all and went off to school Monday morning feeling great. It's really amazing to me sometimes how well he's doing since he started Florinef. It makes me feel so good to see him in his natural state - active and energetic.
Jamie didn't do so well. He's home from school today for the second day, achy and worn out. I don't know how much of this crash is from Baltimore and how much is due to last week's two snow days, when he and Craig spent two straight days sledding, with after-school snowball fights the rest of the week. He said this weekend that he felt bad all last week but forced himself to go to school - he can only push himself like that for so long before succumbing to a full-blown crash.
As for me, I did great this weekend! I felt good and managed all the walking just fine (the long rest helped a lot!) ans felt pretty good on Monday. And I had NO knee pain at all, so I was thinking maybe I was wrong about the Lyme disease still being active. Now I'm not so sure again. I feel pretty bad today - achy, tired, sore throat. Is that a delayed reaction from the weekend, simply a CFS post-exertional crash? Or is it because I put the heating pad on my knees last night and caused a Lyme herx (that's what happened while I had Lyme)? I'm starting to think that the only way I'll be able to answer the Lyme question for sure is to try one more week of doxycyline (antibiotics) to see if they cause a herx. No response means the Lyme is truly gone; suddenly feeling worse means it's still there. I have an appointment with the Lyme doctor next week (supposed to be my last one!!), so I'll probably need to just wait and see.
I have to get to the post office, then I plan to rest aggressively the rest of the day!
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.
Sounds like a fabulous weekend! Hope the Lyme is NOT back. And I hope you and Jamie bounce back soon. Well worth it, I hope?
ReplyDeleteHow was the aggressive resting? Do you, like me, find the constant self-questioning about symptoms tiresome? You have the double whammy of CFS and Lyme and I'm amazed how you manage your conditions, two kids (also sick) and still have good times.
ReplyDeleteThanks for the kind words.
ReplyDeleteJo - Yes, the constant self-questioning drives me insane!! I'm an analytical person to begin with, and this illness gives me far too much to think about. I'm always trying to figure out what caused a crash (or a good period!) and what's going on in my body. Not fun.
Sue
I just stumbled upon your blog and it looks like we have a lot in common. I live in DE, I am an English teacher, my husband is a writer (as am I, although that doesn't pay the mortgage!), we have two boys, and I have fibromyalgia and CFS. Feel free to visit my blog and I'll pop back over here again soon.
ReplyDeleteBravo! I'm so glad you were able to enjoy your weekend. I don't know how I'd survive if I'd come down with CFS before my kids were grown and had moved out of the house. Even though it's true that I'm much lower on the disability scale than you are, I still find it amazing that you're able to live so well with this illness -- parenting, writing two blogs, inspiring the rest of us.
ReplyDeleteJust plain thanks.
Toni