It's already time for me to head back to Connecticut to pick up the boys.
I've enjoyed my quiet solitude, but it will be nice to have them back home. Then again, it's been a full week since our cleaning service was here, and the house is still clean! Just kidding - I'll take their mess and noise along with their sweet company.
I had a wonderfully social day yesterday - a nice change for me. I met my two closest friends in the morning for a walk at the nature center. It was hot and sticky, but it was so much fun to be able to join them again on our weekly walk! It's been months since I was able to do that. I came home and finished a writing assignment, then met them again for a nice lunch. We never run out of things to talk about!
I'm a little run-down today from my walk yesterday (a full hour!), but I'm still optimistic that I'll be able to make the drive to Connecticut later today, after my nap. Several times in past years, I was too sick, and Ken had to take time off from work instead. He told me last night before bed, "Just call me in the morning if you don't feel well enough." Hopefully, I won't need to. Besides, I have plans to meet an old college friend for dinner in CT tonight.
After an early lunch and a (hopefully) refreshing nap, I'll load up the car with my snacks and audio books and head out. The boys and I will drive back home tomorrow morning. Then, it's back to normal life for a couple weeks, until our next trip!
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.
Thursday, July 30, 2009
Monday, July 27, 2009
The Sound of Silence
What's that sound? Ah, silence! The boys are off on their grandparents' sailboat with their cousin on the annual Grandkids' Cruise this week, and Ken and I have the house all to ourselves.
Of course, you know how much I love my sons, and we've been having a lot of fun together this summer...but I was really ready for this week off! I am responsible only for myself, the house is quiet (and clean), there are no hordes of boys running in and out of the house, and the grocery bill was so low this weekend!
As usual, I probably have way too many things that I plan to get done, but I woke up this morning feeling pretty wiped out from a bit (and I really mean a BIT) of yard work yesterday. Fortunately, I feel a lot better after my nap, and it was nice to just be able to take it easy this morning when I needed to. I'm especially grateful for this week to myself because I wasn't able to enjoy it last summer. That week when the kids were gone was the same week that my Lyme symptoms hit hard (and before I started treatment), so I remember spending that week last summer flat on my back. This is much nicer.
So, I'm trying to catch up on some things and even plan to attempt to clean off my office desk (which looks no better than that awful picture I posted back in January!). Meanwhile, Ken and I are enjoying eating foods the kids won't touch - yesterday's meals included olives, mushrooms, and blue cheese - and watching movies and just enjoying some quiet time together. Hope you're having a good week, too!
P.S. Thanks for all the nice comments last week about my 30-day crash-free milestone - I was really touched by all the congratulations! Still going strong...
Of course, you know how much I love my sons, and we've been having a lot of fun together this summer...but I was really ready for this week off! I am responsible only for myself, the house is quiet (and clean), there are no hordes of boys running in and out of the house, and the grocery bill was so low this weekend!
As usual, I probably have way too many things that I plan to get done, but I woke up this morning feeling pretty wiped out from a bit (and I really mean a BIT) of yard work yesterday. Fortunately, I feel a lot better after my nap, and it was nice to just be able to take it easy this morning when I needed to. I'm especially grateful for this week to myself because I wasn't able to enjoy it last summer. That week when the kids were gone was the same week that my Lyme symptoms hit hard (and before I started treatment), so I remember spending that week last summer flat on my back. This is much nicer.
So, I'm trying to catch up on some things and even plan to attempt to clean off my office desk (which looks no better than that awful picture I posted back in January!). Meanwhile, Ken and I are enjoying eating foods the kids won't touch - yesterday's meals included olives, mushrooms, and blue cheese - and watching movies and just enjoying some quiet time together. Hope you're having a good week, too!
P.S. Thanks for all the nice comments last week about my 30-day crash-free milestone - I was really touched by all the congratulations! Still going strong...
Wednesday, July 22, 2009
A Crash-less Month
It's been 30 days since my last crash day! I know that sounds like the start of a Catholic confession or an AA meeting, but it's actually hard evidence that I'm finally getting back to where I was a year ago, before Lyme hit.
I went to see my Lyme doctor in NJ yesterday, and he pronounced me, "About 95% of the way there." My energy level and stamina are about back to where they were before I got Lyme last June. I still have some mild knee pain occasionally, but overall, my Lyme symptoms are almost gone. Once the symptoms are completely cleared, I'll need to stay on the antibiotics for another 2-3 months, just to be sure. I definitely don't want a repeat of what happened last time, when my symptoms returned as soon as I went off the meds. Going through a 2-month herx each time I restart antibiotics has been torture.
On the home front, I'm trying hard to keep that easy-going summer attitude I talked about last week, but it's getting harder because I'm behind in everything! I'm just not getting anything done (as you can probably tell by my less-frequent blog posts). I'm sleeping later, then making breakfast for the boys and doing dishes, a little laundry, check e-mail, maybe run an errand, and before I know it, it's time to make lunch and do more dishes! After my nap, the boys like to go to the pool for an hour, then it's time to make dinner. I enjoy the extra reading time by the pool, but my to-do list keeps growing!
I'll have a chance to catch up a bit next week - the boys will be sailing with their grandparents all week. Maybe I can finally get a little work done! At least, I feel well enough to handle all this activity - I'm very grateful for that.
I went to see my Lyme doctor in NJ yesterday, and he pronounced me, "About 95% of the way there." My energy level and stamina are about back to where they were before I got Lyme last June. I still have some mild knee pain occasionally, but overall, my Lyme symptoms are almost gone. Once the symptoms are completely cleared, I'll need to stay on the antibiotics for another 2-3 months, just to be sure. I definitely don't want a repeat of what happened last time, when my symptoms returned as soon as I went off the meds. Going through a 2-month herx each time I restart antibiotics has been torture.
On the home front, I'm trying hard to keep that easy-going summer attitude I talked about last week, but it's getting harder because I'm behind in everything! I'm just not getting anything done (as you can probably tell by my less-frequent blog posts). I'm sleeping later, then making breakfast for the boys and doing dishes, a little laundry, check e-mail, maybe run an errand, and before I know it, it's time to make lunch and do more dishes! After my nap, the boys like to go to the pool for an hour, then it's time to make dinner. I enjoy the extra reading time by the pool, but my to-do list keeps growing!
I'll have a chance to catch up a bit next week - the boys will be sailing with their grandparents all week. Maybe I can finally get a little work done! At least, I feel well enough to handle all this activity - I'm very grateful for that.
Wednesday, July 15, 2009
Summer Living
Ah, I just love the slow pace of summer! Now that I've finally caught up on laundry, unpacking, etc. from vacation, we've settled into the easy routines of summer.
Summer vacation is a nice break for any kid in school, but for kids with CFS, it is a blissful relief. Jamie, whose CFS is much worse than Craig's, especially benefits from summertime. I've watched him this past week, and it's such a relief not to have to worry constantly about how he's feeling and whether he'll be able to go to school. When he's feeling good, Jamie runs around and plays with his friends, swims, hikes, whatever he feels like. If it was too much and he crashes the next day, he hangs out on the couch with a good book and is perfectly content. No pressure, no worries, no make-up work.
Both boys are staying up later (that means 9 pm for our CFS kids!!), and Craig still wakes pretty early, but Jamie can sleep in a bit (since he's in high school, his day begins at 6:20 am on school days). And I can sleep past 7 am! I don't even have to wear a watch. There are no schedules, no kids to meet at the bus stop, no rushes to school when Craig forgets his drums on band day. The kids and I have a leisurely breakfast, usually do some sort of household chore together for an hour or so (grocery shopping is so much easier with them along to push the car and help with the lifting), then they play and I do whatever I need to do. I'm trying not to put pressure on myself to be too productive working this summer.
But the best part about summer is the evenings. No homework, no soccer practice, no schedule, no scrambling to get the boys to bed by 8 pm. I've even been able to take a walk after dinner a few nights this week. Ah, summertime!
Summer vacation is a nice break for any kid in school, but for kids with CFS, it is a blissful relief. Jamie, whose CFS is much worse than Craig's, especially benefits from summertime. I've watched him this past week, and it's such a relief not to have to worry constantly about how he's feeling and whether he'll be able to go to school. When he's feeling good, Jamie runs around and plays with his friends, swims, hikes, whatever he feels like. If it was too much and he crashes the next day, he hangs out on the couch with a good book and is perfectly content. No pressure, no worries, no make-up work.
Both boys are staying up later (that means 9 pm for our CFS kids!!), and Craig still wakes pretty early, but Jamie can sleep in a bit (since he's in high school, his day begins at 6:20 am on school days). And I can sleep past 7 am! I don't even have to wear a watch. There are no schedules, no kids to meet at the bus stop, no rushes to school when Craig forgets his drums on band day. The kids and I have a leisurely breakfast, usually do some sort of household chore together for an hour or so (grocery shopping is so much easier with them along to push the car and help with the lifting), then they play and I do whatever I need to do. I'm trying not to put pressure on myself to be too productive working this summer.
But the best part about summer is the evenings. No homework, no soccer practice, no schedule, no scrambling to get the boys to bed by 8 pm. I've even been able to take a walk after dinner a few nights this week. Ah, summertime!
Wednesday, July 08, 2009
CFS in Redbook
Hey, guess what? Our family is featured in an article in the July issue of Redbook about happy families (page 174)! Isn't that cool?
I responded to a request from the author for interviews with families who had been through rough times and were happy. Her article even included a mention of my CFS blog (in a paragraph about how helping other people helps us), but unfortunately, that paragraph was cut in the editing process. The good news, though, is that the article names CFS and mentions how debilitating it is - good, accurate PR for CFS is always good!
I responded to a request from the author for interviews with families who had been through rough times and were happy. Her article even included a mention of my CFS blog (in a paragraph about how helping other people helps us), but unfortunately, that paragraph was cut in the editing process. The good news, though, is that the article names CFS and mentions how debilitating it is - good, accurate PR for CFS is always good!
Monday, July 06, 2009
Back Home!
We're back from our 3-week cross-country road trip (if you missed it, there are pictures at our trip blog). We really had a wonderful time - I didn't want it to end!!
As usual, I felt quite good during the entire trip. It's really amazing to me the effect of ditching all the daily to-dos and home maintenance stuff. I was able to take 1-mile long hikes - uphill and at high altitude! Sure, I was exhausted afterward, but there was nothing else I had to do the rest of the day. Of course, I hiked at a really slow pace with lots of stops. It's really pretty funny to see old ladies in sneakers and overweight guys in flip-flops passing me by, especially since I look strong and healthy.
I was thrilled to be able to do some hiking with my family. Before CFS, I loved exercise and all sorts of outdoor activities. My stamina was definitely down a bit from where it was last year - still the effects of Lyme, I guess. Most of the time, I hiked along for awhile, then Ken and the boys went on farther without me. Still, I was pleased to be able to hike at all. For much of the last year, I couldn't even walk around my block without crashing the next day.
Craig did great on vacation. His CFS has always been milder and he's virtually symptom-free with Florinef, even when he's active. Jamie had some down days and was definitely affected by the activity - he sometimes rested in the afternoon when I did, while Ken and Craig did something together - but the slow pace of vacation helped him manage, too.
I'm hoping to maintain some better conditioning now that I've gotten used to a bit of exercise again. I took a slow walk around my neighborhood today. The problem is all the other bits of activity that count as exertion for CFS but aren't really adding to fitness or conditioning - laundry (the washer and dryer have been running non-stop for days!), cooking, dishes, grocery shopping, running errands, and even (though I hate to admit it) sitting at the computer. It seems so unfair that these kinds of things "count" and can keep me from being able to take a short walk.
I'm also surprised each vacation (slow learner!) by the effects of daily stress, or the lack of it. I was really dreading come back home to the never-ending to-do list, over-cluttered house, and jungle-like yard. I tend to use up all my energy just on the daily maintenance stuff, so we never get to things like home improvement (or even pulling weeds). I had 423 e-mails waiting when I turned on the computer this morning (I'm ignoring them for the moment)! And that overwhelmed feeling definitely contributes to CFS symptoms.
So, I'm determined to try to keep some of that vacation feeling going by not getting too overwhelmed and trying to rest more throughout the day so I don't crash. It's a real challenge, though, being back in the real world. I am glad to be back to the blogging world, though - I missed all of you!
As usual, I felt quite good during the entire trip. It's really amazing to me the effect of ditching all the daily to-dos and home maintenance stuff. I was able to take 1-mile long hikes - uphill and at high altitude! Sure, I was exhausted afterward, but there was nothing else I had to do the rest of the day. Of course, I hiked at a really slow pace with lots of stops. It's really pretty funny to see old ladies in sneakers and overweight guys in flip-flops passing me by, especially since I look strong and healthy.
I was thrilled to be able to do some hiking with my family. Before CFS, I loved exercise and all sorts of outdoor activities. My stamina was definitely down a bit from where it was last year - still the effects of Lyme, I guess. Most of the time, I hiked along for awhile, then Ken and the boys went on farther without me. Still, I was pleased to be able to hike at all. For much of the last year, I couldn't even walk around my block without crashing the next day.
Craig did great on vacation. His CFS has always been milder and he's virtually symptom-free with Florinef, even when he's active. Jamie had some down days and was definitely affected by the activity - he sometimes rested in the afternoon when I did, while Ken and Craig did something together - but the slow pace of vacation helped him manage, too.
I'm hoping to maintain some better conditioning now that I've gotten used to a bit of exercise again. I took a slow walk around my neighborhood today. The problem is all the other bits of activity that count as exertion for CFS but aren't really adding to fitness or conditioning - laundry (the washer and dryer have been running non-stop for days!), cooking, dishes, grocery shopping, running errands, and even (though I hate to admit it) sitting at the computer. It seems so unfair that these kinds of things "count" and can keep me from being able to take a short walk.
I'm also surprised each vacation (slow learner!) by the effects of daily stress, or the lack of it. I was really dreading come back home to the never-ending to-do list, over-cluttered house, and jungle-like yard. I tend to use up all my energy just on the daily maintenance stuff, so we never get to things like home improvement (or even pulling weeds). I had 423 e-mails waiting when I turned on the computer this morning (I'm ignoring them for the moment)! And that overwhelmed feeling definitely contributes to CFS symptoms.
So, I'm determined to try to keep some of that vacation feeling going by not getting too overwhelmed and trying to rest more throughout the day so I don't crash. It's a real challenge, though, being back in the real world. I am glad to be back to the blogging world, though - I missed all of you!
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