News From Oklahoma

We’re a week into our vacation, spending a week at my in-laws house in Oklahoma. As you may have seen at our travel blog, we’ve visited some unique and wonderful places on the way out and have enjoyed camping and hiking. We also enjoyed meeting up with some friends in Arkansas that we met through this blog!

It’s always interesting to me to see that I typically feel pretty good while we’re on vacation and rarely experience a crash, even with the physical exertion of walking and some short hikes. That tells me that the stresses and exertion of normal day-to-day life wear me out more than light exercise. The kind of traveling we do is good for me, too. We take these long car trips in part because it’s too expensive to fly out here to see my in-laws, but we also really enjoy our road trips, and it works out well for me and my older son (my younger son’s CFS is well-controlled with medication). We might hike one day, but then we spend the next day in the car – forced to stay off our feet. We nap, we listen to audio books or favorite music, and we look for unique places to stop for lunch. It’s a slow rhythm - certainly slower than our normal pace of life - that’s good for us.

In fact, yesterday was the first day I’d felt a little worn out. At first, I thought that was strange. After all that walking and hiking I’d done in the past week, here I am at my in-laws house – they’re in their 80’s – and I never even left the house yesterday! But then, I realized, I’m back into housekeeping mode here – planning meals, cooking, dishes, lots of laundry, etc.

I’m also struggling a bit with my Lyme treatment right now. I made the stupid mistake of just packing my probiotic with the rest of the medications (in a big backpack in the car). I think the heat killed off all the good little bugs, so my stomach has been in terrible shape, and I’ve had to skip a dose or two of antibiotics here and there to give my GI tract a chance to heal. Ken found me some non-dairy probiotic at the drugstore yesterday, so hopefully I’m back on track now. Once we leave here and start camping again, I will definitely keep it in the fridge.

Our visits here have been tough the last year or so, since my mother-in-law went into a nursing home. Her Parkinson’s has her mostly immobile now, confined to a wheelchair and unable to even talk much (Parkinson’s makes it hard to project the voice and be understood by others). She’s such a good, sweet woman. She heartily welcomed me into the family when we married and has always treated me like a daughter. It’s hard for all of us to see her so frail and unable to even communicate well. We try to bring her back to the house as much as possible while we’re here, but she can only stay a couple of hours at a time because she can’t get to the bathroom on her own. We hate that we’re usually 2000 miles away and can’t be here more often.

Well, time to leave the lovely wireless internet at Panera and head back to the house to make dinner. It’s been fun being back in the blog world for a few minutes!

On the Road Again...

Time for our annual summer road trip! We're taking our pop-up camper and heading out to Oklahoma to visit Ken's parents, then onto Colorado and Rocky Mountain National Park, plus lots of fun stops along the way!

I'm pretty wiped out at the moment from days of pushing myself to try to get everything done in time. There's still a lot to do tonight, but by 9 am tomorrow, we'll be on the road (hopefully) with nothing to do but relax and enjoy the trip - I can't wait! We've got the camper filled with more food than we can possibly eat and a big stack of audio books.

If you want to follow along on our trip, check out our trip blog. Right now, last year's trip is still posted, and we'll start to post new photos tomorrow.

Ready to hit the road!

Stay the Course

I went to see the Lyme specialist today. After driving 90 minutes there (and later, 90 minutes back), his message was pretty simple. He said, "Well, I guess you should just stay the course for now."

You know how I like my data, so today I went in with my graphs and charts updated! I track how I feel each day with a simple scale of 1 to 5 (5 being very sick and 1 being well/almost "normal"). It showed pretty clearly how Lyme has affected me. Last year at this time, I had racked up several months of feeling quite well, averaging 2.1, after starting low-dose naltrexone in March 2008. Lyme plunged me down into the 3's, 4's, and 5's.

In February 2009, my symptoms had cleared and I went off the antibiotics (I was at about 2.2 in February, very close to my pre-Lyme condition). Then, as most of you know, my symptoms returned, I went back on antibiotics and went through another 2-month long herx, with way too many 4 and 5 days that confined me to the couch.

My graph clearly shows steady improvement now, but I'm not yet back to pre-Lyme levels. I haven't had much knee pain, but my overall fatigue and reduced stamina are still worse than before.

So, definitely making progress but not there yet. And, although I hate being on such high levels of antibiotics for so long, I'm going to be pretty hesitant to go off again, until I'm completely sure the Lyme is gone (no way to be really be sure, though). I just don't want to go through a fourth herx reaction from restarting again!

So, no big news. But I'll take slow, steady improvement. Just stay the course.

(check out my past post for more information on CFS and Lyme).

My Secret Life

I survived! I attended my board meeting on Tuesday, just like a real grown-up. By 3 pm when I left, I was totally wiped out. When I got on the train, I was so desperate to lie down that I curled up on the seats for a nap. I was pretty tired yesterday but not badly crashed. The muscles in my feet are still sore from wearing low heels (i.e. girly shoes)!

During the meeting,it occurred to me that no one at the crowded conference table knew about my illness. There used to be a few people on the board that knew me before I got CFS and knew how it had changed my life, but they have since retired or moved on.

One of my colleagues was asking me about another guy who used to be on the board with us. I mentioned that I had forwarded a consulting lead to him that I couldn't handle. He laughed and said, "Well, I'm sure you COULD have handled it, you just didn't want to, right?" I just sort of laughed and dropped it, but I was thinking, "No, I really couldn't handle even a single day of ordinary consulting work." By the end of the meeting, I could tell I was reaching the outer limits of my stamina.

It's so surreal to be among people who have no idea that I normally spend my days lying down with a laptop balanced on my lap or that I need a nap every day. It's like I have this secret life, and one day a year I pretend to be normal. It's especially strange to me because I've always been upfront about my illness and my limitations. It just hasn't come up in these once-a-year meetings since the new personnel took over.

I've written about this feeling before, in social situations, in Living in a World Apart and News From Planet Jackson. At this point, most people in my every day life know about my secret life, though I think that few people truly understand how different our lives really are.

Crazy Week

Today was supposed to be my day of rest to get ready for a crazy week, but I've had non-stop computer problems all day! This means that quick, simple tasks have turned into lengthy, difficult tasks. My laptop is FULL - I mean really full. I keep getting these dire warnings about disk space, and I move big files like pictures and movies to a storage drive, but within a week, the messages come back. Bottom line is that all of our computers are old (ancient in computer time) and we just don't have the extra money to upgrade right now, so we struggle along. Meanwhile, there's something wrong with my e-mail and restarting the computer and modem isn't doing the trick, so I still can't send e-mail. I feel stranded!

Anyway, I got the laptop going again after deleting a bunch of files, so I'm lying down at least. What a week we have ahead of us!

Jamie has 4 final exams this week. During the weekend, he went to 2 parties, played soccer Saturday morning, and marched in a parade with his school band Saturday night. A healthy kid would be wiped out after that. Jamie was a complete zombie by last night. Such is the life of a high school kid. Fortunately (and amazingly), he rebounded pretty well with a good night's sleep and was able to go to his last day of classes today.

As for me, tomorrow is my big day. I'm going to an annual board meeting in NJ, the last vestige of my old career in environmental management consulting. It's the one day all year when I pull on my one remaining suit, sit in a business meeting, and skip my after-lunch nap. As you can imagine, it's that last part that's toughest! I take the train there and back so I can at least rest a bit on the way home, but it's a long day for me.

Besides all that, we have a bunch of end-of-school activities at Craig's school (he has 7 days left) and the last week of soccer practices and games.

Well, I'm really not feeling very good today, so I should sign off and really rest. Big day tomorrow!