I seem to be in a bit of a slump lately. It began while I was on vacation, when the boys and I all took turns for a couple of days with some sort of virus that caused nausea and (for me) achy knees. After a couple days of rest at my in-law's house in Oklahoma, I felt better again and was quite active and well for the rest of the trip.
Since returning home, though, I've continued to have lingering symptoms on and off, mainly very painful, achy knees and lower legs. Yesterday, I even had a mild sore throat. I'm still much better than I used to be - that was my first sore throat since May, when I had bronchitis. I haven't been badly crashed but have had lots of days where I'm just OK instead of good (which I've grown rather fond of!)
I looked back through my records today and saw that this weird achy-knee-thing has happened to me before and generally bothers me on and off for a month or two before disappearing again. Interestingly, it seems to hit me most often in the summer.
I will probably go see my doctor for a Lyme test, just because that is an ever-present danger where I live, but I suspect I'll just have to wait it out as I have in previous years. So, I'm trying to rest as much as I can to avoid getting worse. I'm currently lying on the couch, using my laptop as its name suggests for a change!
Sometimes with CFIDS, there's nothing to do but rest and wait...two things I find very difficult!
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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Tuesday, July 29, 2008
Thursday, July 24, 2008
New Research Links CFS to EBV and HHV-6
I just read some fascinating new research that proposes a strong connection between MS and CFS and links both illnesses to latent EBV and HHV-6 infections. It's so refreshing to see some solid scientific research after all the crap that's been published lately promoting graded exercise therapy for CFS! It looks like the new approach of treating CFS with anti-virals may be on target.
For more on the latest research into CFS and viruses, check out these summaries from the recent International Symposium on Viruses in Chronic Fatigue Syndrome and Postviral Fatigue, held in June in Baltimore:
Summary from Dr. Bell
Summary from CFIDS Association's Scientific Director Suzanne Vernon
(NOTE: Dr. Vernon's summary talks about the use of valganciclovir. This is the chemical name for the drug commonly known as Valcyte).
Lots of wonderful, in-depth research that will hopefully lead to more effective treatments for all of us!
To help support more CFS research, consider donating what you can to the CFIDS Association's Campaign to Accelerate CFS Research.
For more on the latest research into CFS and viruses, check out these summaries from the recent International Symposium on Viruses in Chronic Fatigue Syndrome and Postviral Fatigue, held in June in Baltimore:
Summary from Dr. Bell
Summary from CFIDS Association's Scientific Director Suzanne Vernon
(NOTE: Dr. Vernon's summary talks about the use of valganciclovir. This is the chemical name for the drug commonly known as Valcyte).
Lots of wonderful, in-depth research that will hopefully lead to more effective treatments for all of us!
To help support more CFS research, consider donating what you can to the CFIDS Association's Campaign to Accelerate CFS Research.
Monday, July 21, 2008
Post-Vacation Slump
We returned from vacation over a week ago, but I've been too overwhelmed to take the time to write in my blog. As soon as we got home, I felt completely inundated with more work than I could even bear to think about...over 300 e-mails, writing projects that needed to be completed, pages and pages of to-do lists, a filthy house filled with vacation clutter, not to mention mountains of laundry. To top it all off, I had less than a week to pull things together, do all that laundry, unpack and re-pack my two boys, and drive them to Connecticut for their week on their grandparent's sailboat.
As you might suspect, I felt crummy, too (stress anyone?). I also had the post-vacation blues. We had a wonderful three weeks, and I could have easily stayed on the road, exploring new places and having fun. On vacation, my life has this pleasant narrow scope where the only things I have to think about are what we'll do that day and what we'll eat. Living in our pop-up camper is great - I can clean up the whole place in minutes! No phone calls, no e-mails, no work deadlines, no "have to do's."
But, vacation can't last forever, and I have now readjusted to REAL life. I drove the boys to CT last Thursday and returned on Friday to an amazingly clean (our cleaners had been here!) and QUIET house. My husband and I enjoyed a weekend that was both relaxing and productive, eating foods that our kids hate, spending time with friends, and even doing a little home improvement work that never gets done with kids around.
Even more thrilling, I now have three whole days entirely to myself, since my husband left on a business trip today. Three days to take care of no one but myself in a clean, quiet house - ah! Of course, I love my sons and my husband, but this little break is just what I need to catch up and recuperate.
If you'd like a peek at all of the places we went on our trip and all the fun things we did, take a look at our vacation blog (to read the entries in order, scroll down to the bottom and read from bottom to top). We really did have a great time, and I was pleasantly surprised at how good my stamina was. We went hiking, climbing on rocks, horseback riding, and lots of other activities, and I never once had an exertion-triggered crash, not even for a few hours! Jamie didn't fare so well; it was as if he and I had switched places this year in terms of physical stamina. He has a doctor's appointment next week when he returns - I'll let you know how things go.
I'm also planning an update this week of how I'm doing medically. Nothing has changed much from my last update, but people e-mail me all the time to ask, so look for an update soon.
P.S. to Ashley from Philadelphia...
I've tried to reply to your e-mail about doctors, but I keep getting error messages when I try to send my reply. Please e-mail me again, and I'll try again.
As you might suspect, I felt crummy, too (stress anyone?). I also had the post-vacation blues. We had a wonderful three weeks, and I could have easily stayed on the road, exploring new places and having fun. On vacation, my life has this pleasant narrow scope where the only things I have to think about are what we'll do that day and what we'll eat. Living in our pop-up camper is great - I can clean up the whole place in minutes! No phone calls, no e-mails, no work deadlines, no "have to do's."
But, vacation can't last forever, and I have now readjusted to REAL life. I drove the boys to CT last Thursday and returned on Friday to an amazingly clean (our cleaners had been here!) and QUIET house. My husband and I enjoyed a weekend that was both relaxing and productive, eating foods that our kids hate, spending time with friends, and even doing a little home improvement work that never gets done with kids around.
Even more thrilling, I now have three whole days entirely to myself, since my husband left on a business trip today. Three days to take care of no one but myself in a clean, quiet house - ah! Of course, I love my sons and my husband, but this little break is just what I need to catch up and recuperate.
If you'd like a peek at all of the places we went on our trip and all the fun things we did, take a look at our vacation blog (to read the entries in order, scroll down to the bottom and read from bottom to top). We really did have a great time, and I was pleasantly surprised at how good my stamina was. We went hiking, climbing on rocks, horseback riding, and lots of other activities, and I never once had an exertion-triggered crash, not even for a few hours! Jamie didn't fare so well; it was as if he and I had switched places this year in terms of physical stamina. He has a doctor's appointment next week when he returns - I'll let you know how things go.
I'm also planning an update this week of how I'm doing medically. Nothing has changed much from my last update, but people e-mail me all the time to ask, so look for an update soon.
P.S. to Ashley from Philadelphia...
I've tried to reply to your e-mail about doctors, but I keep getting error messages when I try to send my reply. Please e-mail me again, and I'll try again.