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 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.
First, congratulations that you're feeling better! YAY!!
ReplyDeleteI think that schedule sounds like an ideal summer schedule to me. :) It's hard to relax and NOT feel guilty, but you certainly deserve it.
Next week sounds good too. I'd relish having a week by myself. Hopefully you can play a little catch-up and feel great about it.
Take care!
Lori
Wow - 30 days without a crash is fantastic!
ReplyDeleteWhat great news, Sue. It sounds like your health is getting better and better...what more can we ask for???!!!! yahoo.
ReplyDeleteYou're right, Lori! I need to stop feeling guilty and just enjoy summer, don't I? Isn't that what I just wrote last week? (short memory)
ReplyDeleteBut the boys had a friend sleep over last night, and I've already run the dishwasher twice today! Actually, I love that my kids and their friends like to hang out here...but a week on our own will be pretty nice, too!
Sue
Thirty days. Great news, Sue.
ReplyDeleteToni
A crash-less 30 days is a major accomplishment, good for you! I hope it's a streak that keeps on running!
ReplyDeleteThis is fabulous and encouraging news. Great to hear it.
ReplyDeleteI'm so glad you're nearly through with the Lyme! Crash-free sounds so nice. I hope I reach a point where I judge things better and not push myself beyond the break point. Patience, trial and error, I suppose!
ReplyDeleteThanks, everyone!
ReplyDeleteShelli - I'm still not at the point where I judge things better and don't push myself! That makes this good streak all the more remarkable. With the kids home from school and their friends over here most days I really haven't been moderating my activity level very well. In fact, I'm pretty wiped out this morning! (though not fully crashed). I DO need to be more careful, too.
Sue
Congratulations on 30 days with no crash! And about being 95% of the way there with lyme-that's huge!
ReplyDeleteHi Sue, I enjoy visiting your blog. Wow, 30 days of health is impressive. Congratulations!
ReplyDeleteSue, i am just so happy for you. you seem to be doing very well and it continues to give me hope. thank you for sharing your story.
ReplyDeletei wanted to ask you something...did you ever ask your doctors why your sons have this illness too? i am worried about whether i can pass this on to someone else. although i will not have children at this point, i wonder if i can be in a relationship.
i know that some doctors think that CFS is caused by HHV6a or some virus (and in your case, lyme)...but has any doctor suggested that you could pass it on to your husband, for example?
thank you
sue
Hi, Sue -
ReplyDeleteThanks for taking the time to comment - I'm glad you've found my blog helpful.
Just for the record, my CFS was NOT triggered by Lyme. I've had CFS for 7 years - probably triggered by some unknown virus - and I just got Lyme last summer. I just wanted to clarify that, although Lyme IS a known trigger for CFS.
Yes, there is definitely a genetic component to CFS. Several studies have isolated specific genes involved. However, it's a genetic tendency or predisposition that's passed along, and there's no way to tell whether the child of someone with CFS will or will not someday develop CFS, too. Who gets CFS seems to depend on a complicated mix of both genetics and the presence of a trigger. Scientists still don't understand exactly how this occurs. For instance, I had mono when I was 13 - a well-known CFS trigger - but I didn't develop CFS until I was 37 (and I was very healthy and active up until then).
A study conducted in New Jersey showed that being blood-related to someone with CFS gave a person 4x the risk of getting CFS as the general population. Interestingly, people living in the same household but not blood-related to someone with CFS 9for instance, a spouse) had a 9x greater risk of getting CFS! This is still something of a mystery but indicated there must be some sort of infectious component - perhaps two people in the same household are both exposed to the same triggering infection. Scientists do NOT think that CFS can be transmitted from one person to another. In that same study, people blood-related AND living in the same household (like children) were at a 13x greater risk.
Of course, these are just statistics and risks. Although CFS is common among multiple family members, like in our case, there are also many, many parents with CFS whose kids are healthy. At this point, there's just no way to predict who will get CFS in the future.
Hope that helps explain thintgs a little bit - it's all very complex!
Sue