After spending much of the last 6 months homebound, I had a couple of big days of outings this week!
Yesterday, to kick off the day, a wonderful friend drove over here, just to join me in my meager 10-minute slow walk! It was great to see her and have time to catch up. Then I showered (oh, joy!), rested a bit, and went to the library for a book discussion. This was my library's first noon-time book group (they have another that meets in the evening that I've never managed to get to), and I really enjoyed it! The book we discussed was Bel Canto by Ann Pratchett. You can read my brief review at Goodreads, if you're interested.
At the discussion, I ran into an old work colleague from DuPont that I hadn't seen in 15 years, so I enjoyed catching up with her. All this social interaction in one day after so much isolation was thrilling!
Amazingly, I still felt OK today and drove to New Jersey for a check-up with my Lyme doctor. This is always a big day as well, with a 90-minute drive each way. I just got Lyme about 18 months ago. If you missed all that drama (!) and explanation, here is a 2008 blog post about my initial Lyme diagnosis and how to tell CFS from Lyme and here is another blog post from about a year ago with more information about my Lyme treatment, plus information on being tested for Lyme.
As for today, the doctor is still optimistic that I will get rid of Lyme completely. He raised my dose of Plaquonil, an anti-inflammatory that also helps the antibiotics (doxycyline) better penetrate my tissues, so I may experience another herx reaction - hopefully not too bad this time. He agrees that my current relapse is almost certainly a CFS reaction due to exposure to all the viruses this winter; he said it was a terrible season for viruses. So, he and I are both hopeful that I will improve with spring coming. He took blood for standard monitoring, and that's about it.
After my appointment, as is my routine, I stopped at the huge Target store across the street from his office (ours in Delaware is 25 minutes from my house) and stocked up on necessities. The cashier finished ringing up my huge order, I packed all the bags in my cart...and the power cut out for a second before I could pay! We had to unload everything so she could re-scan every item! Fortunately, I was still doing OK. Then, I drove home, with my customary Burger King burger and fries and an audio book in the CD player.
And....(drum roll, please)...I still feel OK! But ask me again tomorrow...
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.
14 comments:
Good news all the way around Sue...for managing the trip and the doctor's news. So glad. Joel is back on placquinal for 3 months and he notices a difference in his arthritis pain.
Congratulations on your two big days. Being able to go out and be with people must have been a huge relief after so many months spent mostly at home.
I loved Bel Canto. In fact, I've listened to it twice (partly because Anna Fields, my favorite audiobook reader, reads it). Did you know it's based on real events? I didn't get very far into it before I was reading about it on Wikipedia: http://en.wikipedia.org/wiki/Japanese_embassy_hostage_crisis
I also read that the soprano is based on Renee Fleming who is a friend of the author's. Being an opera fan, I really enjoyed that aspect of the book too.
Could it be that the D-Ribose is helping and that there won't be any bad after affects from your outings? Wouldn't that be great?!
So exciting to go out and do things!
I exercised rather boldly yesterday (by my standards) and hopefully the fact that I haven't done anything since will let me off the hook... post exertional pre-malaise anticipation?
Here's hoping we will still feel OK tomorrow. :D
D.
It sounds like a great day! And also good news from your lyme doctor too! That's interesting what he said about this season being a bad one for viruses. Maybe that's why so many of us have had prolonged crashes and/or relapses.
I hope you enjoy your evening and that there is no fall out from today...
Renee - I haven't had any Lyme pain in a while now, although my knees still sometimes get achy for just an hour or two after I take my Lyme meds, so the doctor said that's a sign that there's still something there. Glad the Plaquonil is helping Joel!
Toni - THAT IS SO COOL! I had no idea Bel Canto was based on real events - I sent the link you listed to the discussion group. Thanks! I sure hope the D-ribose is helping - we'll see...
D - PEPMA? I love it! We need a term for that period of anxious waiting after exertion. I hope you still feel good tomorrow!
Terri -
I've heard the same thing from ALL of our doctors this winter - my own GP and the kids' pediatrician both said it was the worst virus season they'd ever seen in decades of being doctors. My kids' schools had record absences. And SO many of us with CFS have relapsed this winter - let's hope spring brings a fresh start!
Sue
Thanks for commenting on my blog, Sue! I wrote you a message back and thought I'd let you know, since I always forget to check that. Sounds like you had a productive day! Also, the fact that you can have a burger and fries gives me hope, lol.
Robyn
Drum rolls and cymbals! Wow. I think I would have wept if I'd had to rescan everything. I hope you don't get too much payback from being out and about. Great stuff, I can feel your optimism, it's contagious :-)
Hi Sue! Congrats on having 2 busy days! I LOVE the feeling of having a shower after having a few awful days, it's like cleaning it all of you and starting a fresh.
I had my CFS therapy yesterday, and my nurse was saying it's understandable to be anxious about relapsing, or wondering if you're going to be paying for good days but apparently the worrying will make it all worse (something to do with the nervous system and adrenaline). So please just think of the wonderful days out and the feeling it gave you!
Robyn -
Whether you have both CFS and Lyme or just Lyme, both can cause OI, so you should stick with your high salt diet! One of the few benefits of CFS - we can enjoy burgers and fries without guilt!! All that salt is like medicine!
Forgetful Girl -
Yes, I've discovered first-hand that stress can trigger bad crashes, sometimes even more so than physical exertion. Our bodies just don't manage those stress hormones well. I try to stay positive!
Sue
PEPMA it is! And I'm with Toni hoping it's the D-Ribose helping.
I don't feel too bad this morning, just the usual hazy, semi-flu tiredness, no severe crash yet. Walking on tiptoes!
D.
D - Good to hear! I am crashed today but hoping it won't last long - going for a long nap - hope it helps!
Sue
Bel Canto is my all-time favorite book and Ann Patchett is a fabulous author! IMHO. Ok - now I"ll read the rest of your post ;)
That's a LOT for one day -- glad you are doing ok! Hope a crash doesn't ensue -- hoping for a good weekend for you :)
That sounds like really great news, Sue! And I'm glad you were able to do everything you needed to get done! That has to feel wonderful.
Isn't it great to run into people you haven't seen in a while and catch up!? I love that!
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