What Happened?

So much for my little pep talk yesterday about being flexible and going with the flow. Anytime you have the audacity to think you've figured CFIDS out, it pulls the rug out from under you again to remind you who's really in charge.

Ken and I did enjoy a nice dinner at our favorite local brew pub. The food was delicious, and I even had a tiny 2 oz. sample-sized pale ale to satisfy my love of microbrews. We were driving to the bookstore after dinner, to shop for our son's upcoming 12th birthday, when I was suddenly overcome by severe abdominal cramps. Within 30 minutes, I went from feeling fine to feeling horrible, knowing I had to get home NOW.

Despite the fact that I'm in the middle of a 90-day pack of birth control pills, my body was rebelling with painful cramping and bleeding. This has never happened to me before - another first for this crazy disease that wreaks havoc with your hormones, as well as all your other bodily systems. I drove home as quickly as I could and collapsed onto the couch, exhausted and achy.

I slept for 10 hours last night but woke up feeling completely exhausted. My limbs felt like they were filled with wet cement, and I couldn't seem to keep my eyelids open. I finally gave up and burrowed back into my pillow, unable to sleep anymore but also unable to get up. A t-shirt logo kept running through my head: "Some days it's not even worth chewing through the restraints." I've always found it amusing before, but today it just felt accurate.

I did eventually get out of bed, and breakfast helped a little, but I felt as if I'd been awake for 2 days, instead of 2 hours. I gave into the exhaustion and gave up my plans for the day - what else can you do?

I felt much better after my nap and even managed to grab a few things at the grocery store (although an unexpected wait at the seafood counter almost did me in again). Whew.

I have no idea what could have sparked this peculiar crash. In fact, yesterday was the most restful, stress-free day I'd had in months!

The Afternoon Slump

No matter how good I may feel when I start the day (and I am fortunate enough to have a fair share of "good days" now), I always feel crappy in the afternoon. This daily slump is really getting old. I have this pocket of useless time every single day. I've often wondered whether other people with CFIDS have similar daily energy cycles, and if there's anything I can do about it.

I learned long ago that I can best manage to live my life with CFIDS if I stick to a predictable routine. My doctor told me this when I was first diagnosed, and, much to my frustration, I've found she was absolutely right. Spontaneity became a thing of the past.

My routine is all about rest. I know that I need a good 9 hours of sleep at night to feel decent the next day. I have also learned that those lazy weekend mornings in bed that I enjoyed pre-illness (and pre-children!) won't work anymore. I have to get to sleep early each night because I wake up at the first sign of morning light. My husband, Ken, complains about the cave-like quality of our bedroom. My only hope of sleeping to 7:30 or 8:00 am is to obsessively shut out all light. We have room-darkening shades, and I even have to close the doors to the hall and the bathroom.

Even if I wake up from "the cave" feeling great, by early afternoon I'm ready to lie down again. I take a nap every day. When I first got sick, I avoided mid-day resting unless I felt really bad, but I soon learned that by the time I feel bad, it's too late to stop the freight-train of a crash. The power of preventative rest in CFIDS is amazing. Taking that daily nap allows me to feel good through the evening, so I can enjoy some time with Ken and the kids and even stay up until 10 pm (ooh!).

Even though I feel much better with my nap than without it, I often wake up feeling rotten. My mouth is dry, my legs ache, and I have no energy. I end up having to go lie down on the couch to rest from my nap!

The really stupid part is that I still sometimes try to make plans for my afternoons. Today, in a fit of feeling good and having the freedom to do anything I wanted, I looked through my favorite cooking magazines this morning and made all sorts of plans for delicious dinners to make for Ken and I this week (stuff the kids would never eat!). I figured I'd run to the grocery store after my nap. Duh! Now the store (and the dinner) will have to wait until tomorrow.

Oh, well. Besides routine, the next most important part of managing CFIDS is flexibility. So, I called my husband at work and made plans to meet him for dinner at a favorite restaurant. I should feel well enough by then to manage it, and I can hit the grocery store tomorrow (in the morning!). Hey, wait a minute...this is spontaneous, isn't it? You just gotta go with the flow.

Shhh...What's That Sound?

It's silence - something that's been in short supply since summer started. I drove my two sons to my mother's house in Connecticut yesterday and just returned this afternoon (the three-hour drive now requires a significant rest period before attempting the return trip). The boys will spend the next six days on a sailboat with their Gramie and Pop Pop - pretty much a perfect week for them.

I know that I'll miss them (I already do miss their hugs and sweet affection), but right now I'm relishing the solitude. Our sons bring incredible joy to my life, and I sincerely enjoy spending time with them, taking walks, playing games, cuddling together for movies. Kids are also a huge responsibility, though, and it is such a huge relief to me today to be responsible for no one but myself. What a strange feeling!

When I got home, I reheated left-overs for myself for lunch - no special requests, no extra work, no pile of dirty dishes. Then I took a long nap, without worrying about what time I got up or what was going on while I slept.

My husband just got home from work, and we're really looking forward to some quiet time alone together. We can eat whatever we want, talk about whatever we want, and even watch a movie together before 9 pm! OK, maybe it's not the wild partying of our younger (and healthier) days, but this is exciting for us.

Best of all, there is no background noise of non-stop quotes from Spongebob Squarepants and pretend pirate battles. We will dine this evening without once saying, "Boys, stop repeating that!" Ah, this is living.

Remember Who's Boss

The Boss? CFIDS, of course. I feel strongly about being myself and living my life, but I've learned again and again that I must stay within the limits defined by this disease or I'll end up unable to do anything at all. It's ironic, really. The only way to maintain any degree of freedom in your life with CFIDS is to live in a very careful way, always being ultra-aware of symptoms, activity level, and limits.

I got cocky this week and forgot that basic lesson. My energy and stamina have seemed a bit improved the last month or so, and I let down my guard, allowed myself to be less vigilant.

I've been running around like mad all week - grocery shopping, kids' orthodontic appointments, bank, post office, etc. I've also been cooking (and cleaning up) three meals every day. Even breakfast and lunch have been more elaborate than usual, as I've been trying to make some special things to help Jamie get through his two-week trial without dairy. It all caught up with me yesterday, but, even then, I ignored the signs (mild sore throat, exhaustion, sleep problems) and kept going.

By bedtime last night, I realized I had pushed too far, and this morning, I made sure to pay close attention to how I felt, instead of ignoring it. I'm trying to keep a positive attitude. Today is a day off. No to-do list. No errands. OK, I did make French Toast for the kids and their friend who slept over, but I've spent the rest of the morning propped back in the recliner, reading the paper, using the laptop (a bit), and even zoning out with a little TV (Food Network - yum!).

Sometimes, you have to get back to basics...rest, feet up, lots of fluids. My boys will be pooped out from their sleep-over, so we'll all take naps this afternoon and take it easy. Slow and easy.

Summertime...and the Living is Easy

Well, it's mostly easy. It's very nice not to worry about school schedules, homework, sports practices, etc. I wasn't feeling too well this afternoon (went to dinner with friends last night), and it's great to be able to just take it easy when I need to.

True, I don't get much accomplished with my two boys around all the time, but when I can arrange for friends to come over, they're all old enough to keep themselves occupied. Right now, there are three muddy, sweaty boys in our basement, playing a board game and sucking on popsicles. They spent two hours out in the woods behind our house, playing in the stream, climbing on rocks, and swinging on vines. Great summer stuff!

They should cool off quickly down in the basement, where the temperature is cold enough for polar bears. That's the part I hate about Delaware summers - the heat and humidity. We had an unusually mild week last week, but now we're back to 90 degrees and humid. I grew up further north (Rochester, NY) where summer temperatures usually stayed in the 80's, with nice, cool nights, and I have never adjusted to the more southern heat and humidity, despite several years in New Orleans.

It's worse now, with CFIDS. My whole body temperature seems to have risen in the past couple of years. I used to be the cold one in the house, always piling on the blankets and sneaking to the thermostat to turn the temperature higher. Not anymore. I have a closet full of warm sweaters that didn't get worn at all this winter and rarely pull more than a sheet over me at night, even with our air conditioning on. It's crazy! Even though I need it more, I still don't like to live in air conditioning. I'm a fresh air girl. So, you can see, I'm kind of stuck here. I'm out on our shaded porch for now but will soon have to escape back to the A/C.

All of that seems like silly complaining, though, considering how well this summer is going. Ken and I are incredibly grateful that both of our boys are feeling so good and are able to enjoy their summer. These classic summer days of playing outside with friends seemed like an impossible dream six months ago. So, I guess the living is easy....

I'm Back!

Jamie and I on top of the world in Shenendoah National Park

We returned from our vacation this week (you can see pictures at our vacation blog). It was a wonderful trip, one of my best since getting CFIDS. I felt relatively well most of the time and had no major crashes. Hurray! Road trips actually work out very well for us. Even if I've been pretty active, I'm guaranteed plenty of time off my feet every day in the car, and even the boys will take naps every day while we're driving.

Best of all, both of our boys are doing well. Without the mental exertion of school, both of them have plenty of physical stamina. So far, they've been able to do whatever they want this summer. Today they're running around outside with their friends, playing tag. We are incredibly grateful for such normal kid moments. It's a big relief after some of the difficult times they've been through. Thank goodness for Florinef!

Jamie, our 11-year old, has decided to try another dairy-free test. Although he's been great overall, his GI symptoms have gotten worse. It's finally bad enough that he's prepared to try going without his precious milk and ice cream, at least for a little while. I don't know if this will help him, but giving up dairy greatly improved - almost eliminated - my own GI symptoms, so we'll see what happens.

We had a wonderful vacation, but it's also nice to be home again.

Digging for diamonds in Arkansas