Whew. Yesterday was a long, exhausting day, made worse because of my holiday panic! December is always hectic, but losing a full week last week really did me in. I'm trying very hard to calm down and rest today.
I drove to New Jersey yesterday to see my Lyme doctor. I told him how badly flared up I've been all fall (CFS, not Lyme). I updated my charts before my appointment, and it was eye-opening (I keep track of how I feel each day). I was severely crashed and unable to do anything - 4 or 5 in my ratings - 30% of the time in September, 50% in October, and 30% in November. My knees have hurt a lot this past week, but I'm getting frustrated that I can't really tell whether it's Lyme or just because my CFS has been so bad. My doctor was very zen when I fretted, "How will I know when the Lyme is gone when I can't tell what's CFS and what's Lyme?" He said, "You knew when it started. You'll know when it's gone." Meanwhile, I'm still on 400 mg of doxycycline a day (16 months now) and he wants me to start on Plaquonil, which should help my knee pain and also help the antibiotics to better pentrate my cells.
After my appointment, I went shopping at Target for 90 minutes. There's a Target right next to the doctor's office, and the nearest one in Delaware is about 25 minutes away, so this has become part of my NJ routine. The store was packed with holiday shoppers, and I was trying to get as much Christmas shopping done as I could because I knew I might not be able to get out again. So, I didn't get home (a 90-minute drive) until 2:30, way past my usual nap time.
Then, we went to Craig's holiday concert last night. He plays percussion in his middle school band and did an awesome job on the bells in Carol of the Bells and in the lead role for Little Drummer Boy! As you can imagine, I was totally wiped out by the time we got home at 9 pm.
I was also mentally freaking out yesterday. There's a bunch of stuff we need done THIS week because we leave at noon on Friday to celebrate Christmas with my family this weekend. And Craig's teachers sent a note home yesterday that he needs to bring in 30 cookies for a cookie exchange on Friday! I slept horribly last night, with visions of Christmas shopping and other tasks undone dancing in my head.
I'm trying hard to calm myself down today. I'm dressed in sweats (a signal that I don't intend to leave the house or even the couch today). I can't give in and do nothing, but I'm lying on the couch with my laptop. Even though it's probably insane, I'm going to try to finish our annual year-end DVD of photos today, so I can give my family copies this weekend. I know I might not finish, and I'm resigned to that, but I know from past experience that if I don't do it before January 1, it probably won't get done.
I realized last night that there's really only 1 day all year when I really take the day off and don't worry about getting anything done - Christmas Day. On Christmas, it's just the four of us, here at home, with nothing to do but play and no where to go. I can't wait! But one day a year is really not enough, is it?
OK, it's time to stop venting. Breathing deeply...
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.
7 comments:
Breathe In, Breathe Out. It's easy to get caught up in the holiday frenzy - we all do it! Try to take it easy as best as you can. Praying for you, Sue, :)
Hope things settle down soon for you Sue. Joel and I will both attempt Plaquonil after Christmas...We are using it for babesia along with Mepron and Zithromax. I read it is a cyst buster too.
Just try to keep breathing deeply and remembering that everything is not an emergency :-) I say that as I am repeating it to myself all day today too!!
Take care now............
Interesting that you'll be trying Plaquonil, too, Renee - we'll have to compare notes. I'm going to wait until after Jan. 1, too, because the doc said it might cause me to herx.
Thanks for the reminder that everything is not an emergency!!! i think I need to get that stamped across my forehead, so I'll remember!
Sue
Man, you're as stubborn as I am! I read this with a sense of relief that I'm not the only one.
And, how annoying to have a zen doctor. Perhaps he says that to everyone. It's his stock response when he doesn't know the answer. Doc, doc how will I know when my marriage is over? - you knew when it started, you'll know when it's gone. Sorry, resorting to black humour, not a good sign.
I might try another strategy for the holiday season. CFS roulette - just do as much as I can for as long as I can and see how long it takes me to fall over. Oh - silly me, I'm doing that already.
Hugs from freezing Britain ((())))
Ha ha ha, Jo - Yup, I guess I am pretty stubborn!! Believe it or not, I have learned to lower my expectations and back off the perfectionism since CFS. You should have seen me before!!
I finished the DVD yesterday (so there!) but still need to burn the discs which takes a long time. Going to attempt a very brief foray into a store. I'm trying to strategically choose just the right store where I can get everything in one place. We go to visit my niece and nephew tomorrow, and I don't have their gifts yet!
Still trying to maintain a calmer, more relaxed attitude...breathe in, breathe out....wish me luck!
Sue
Yes, good luck with that!
There's such a mental aspect to the Christmas season even if we don't have a lot of physical obligations (e.g. hosting guests). I buy almost all my gifts from my bed on my laptop. Neither of our kids come up for Christmas. So it's just Tony (my husband) and me and a friend in town who has no family. We may attempt a video chat with our kids but then will have a quiet dinner. Why am I describing all this? Because, I'll still be utterly exhausted! Exhausted from wishing I could be with my kids, exhausted from just the excitement of it being Christmas day, etc. One the ways my family describes this kind of exhausted state is to say that I'm "cooked," as in "We better end this video chat. Mom is really cooked."
So, the others of you have your work cut out for you -- to not only handle the mental exhaustion but the physical exhaustion from hosting people, socializing, etc. So, take care everyone, pace, ask others to help, and have a wonderful holiday.
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