Pacing and Planning

We lost our internet access this weekend. I felt so stranded! I couldn't e-mail, couldn't check the weather forecast or the school lunch menu, and couldn't blog. I'm so relieved to be connected again!

I thought a lot this weekend about the intricate strategies I employ to try to pace myself so I'll be able to do the things that are most important to me. It's a complicated dance that requires constant vigilance.

The big event this weekend was a neighborhood picnic/pool party on Saturday evening. I also had my usual list of things I wanted to get done, but I had to keep revising my plans based on how I was feeling. For starters, I took a shower and shaved my legs Saturday morning. Shaving requires a lot of extra time standing in the warm shower stall, so I was wiped out when I finished (one thing I hate about summer). So, that was about it for Saturday!

I rested most of the day and did feel pretty good for our gathering that evening. I tried not to stand much at the party, even though I felt a little silly talking to a group of standing people while I sat in their midst. I weathered the social interaction pretty well and felt good on Sunday.

Then, all my careful planning and pacing went out the window. My husband, Ken, went out to do some yard work, and I said I'd help him for a few minutes. Our yard is an overgrown jungle at the moment, and I hate not being able to do much about it. I knew I could handle 15-20 minutes of weeding, so I came out with him. Unfortunately, I didn't wear a watch, and the huge amount of work just sucked me in. I kept saying to myself, "I'll just finish this little section." By the time I came in, I was covered in sweat and dirt, my heart was pumping madly, and I knew I'd gone over the line.

I guzzled some of my son's Gatorade Endurance (double the salt) and popped some extra supplements, but I had to spend the rest of the day flat on my back, thinking about all of the other things I'd wanted to do.

I sometimes get frustrated by having to be ever-vigilant, planning every single action and activity and mentally tabulating what I can handle, but it sure beats ignoring my limits and crashing. So, today I'm back to my careful approach, resting after walking my son to the bus stop, putting my feet up so I can handle lunch out with a friend. It might be tedious to live this way, but I am living.

School Anxieties

My two boys head back to school next Monday. They're excited and looking forward to it, but my husband and I are full of anxiety.

It hit me hard last night, after talking to another mom about the teacher assignments that had recently been mailed. I got off the phone and tried to concentrate on the movie Ken and I were watching, but I suddenly felt horrible, like I had been punched in the gut. I tried to figure out what was wrong and realized it was wave of anxiety over the coming school year.

Both of our boys have been doing really well all summer, able to be active and play like normal, healthy kids. Jamie's improvement on Florinef has been absolutely stunning, bringing his stamina almost back to pre-CFIDS days. He's going to try going back to full-time school, a normal 7th grade schedule (he ended up taking 3 classes in school last year and the rest from a homebound tutor, dropping everything but the required academic courses).

All of this is very encouraging, and Ken and I are hopeful that this year will be better. But we're also scared, trying to ward off our feelings of impending doom. You see, we started out the past two years with high hopes also and ended up struggling through the most difficult period of our lives.

CFIDS is scary - its unpredictability, its seemingly random relapses, its sense of having no control. It's exponentially scarier when it's your kids living in its shadows. Jamie is doing very well on the Florinef, but we're holding our breath that he doesn't relapse. Meanwhile, our 8-year old, Craig, has had mild symptoms in the distinctive exertion-crash pattern of CFIDs for two years now. Last year, he ended up missing 32 days of school (not much by CFIDS standards but enough to trigger a shower of meetings with the principal). He's also had a good summer, but we're holding our breath, waiting and watching. Potential triggers of a more severe illness are everywhere - unseen viruses, unexpected stresses and exertions, even puberty. If I think about it too much, it terrifies me, knowing of the genetic timebomb ticking away.

On top of our fears for our sons' health, we dread having to deal with the school staffs again. Our never-ending meetings, negotiations, and battles last year left me severely ill. We don't want to have to go through that again.

OK...big deep breath. It's easy to let these fears take over, but it's not good for me. We have good reason to be optimistic. Both boys are doing substantially better than they were a year ago. We took steps this summer to minimize over-exertion and purposely kept these last weeks of summer easy. Both boys are returning to familiar schools (last year was a new school for both of them). I finally e-mailed the middle school today to update the school counselor on Jamie's health and his plans to try a normal schedule. Her response back was pleasant and surprisingly supportive. It's a new school year, with new opportunities.

Fear is like a poison. I can feel its physical effects on me. We just need to continue to live our lives one day at a time, focusing on our joys and blessings today and hoping for the best tomorrow.

Never a Dull Moment

Boy, do I feel silly for complaining yesterday about my boring, slow-paced life. We ended up spending the evening at the local urgent-care clinic, tending to another round of boy injuries. Bringing up boys is a never-ending adventure!

Ken and I had just gotten dinner ready and were going to call our 2 boys in when our neighbor burst through the door with a sobbing, pale Craig (our 8-year old), holding a bloody cloth against his head. When he told us a few minutes later that he felt dizzy and cold, we knew we had to get him some immediate medical attention.

As best as we can piece together from the boys' excited recap, it seems that they and their two friends from down the street were sort of pole-vaulting across a rock-filled gully when Craig fell flat on his back (and head) onto the rocks. Yes, pole-vaulting. They got this great idea to use big sticks to leap across the ditch. As Jamie (our 12-year old) said, "It was awesome - it felt like you were flying!" Except, of course, that they don't have wings, so when our little daredevil Craig tried "Mega Gully", he ended up on his back with the wind knocked out of him.

On the plus side, a bleeding head wound and possible signs of shock get you a free pass through the waiting area at the clinic. I think the staff was also simply impressed by the range of wounds Craig was sporting - scratches, scrapes, and cuts all over his arms, legs, and back. Fortunately, he looked worse than he was. The doctor diagnosed a mild concussion and put a couple of stitches into his scalp. There were a couple of moments of confusion when I tried to explain that the huge bruise on his left arm was from last week and had already been x-rayed. Craig passed his middle-of-the-night pupil tests (that was fun) and actually feels pretty good today, other than a mild headache.

My mother thinks we have two very accident-prone children, but I have come to learn that this is life with boys.

Besides, I have a bizarre sort of perspective on this, thanks to our boys' struggles with CFIDS. I'm actually grateful that my boys are both feeling well enough to run, climb, play, and even pole-vault just like any other kids. An ocassional trip to the ER seems a small price to pay for such a blessedly normal childhood.

Time-Out

I'm suffering through a forced time-out today, just feeling yucky and run-down. I keep thinking of it as a lost day, but I'm trying to stay positive (and not quite achieving it). There is a list of important things to do today on my kitchen counter, with nothing crossed off, while I lie here in the recliner. It's one of those days where my first thought upon waking was how much I was looking forward to crawling back into bed later. There's nothing more pathetic than spending a day waiting to go back to bed (except maybe for wallowing in self-pity, but I'm not letting go now that I have a good rant going).

I've been feeling impatient the past few days. I've learned that the best way to live with CFIDS is to do everything in little steps. 5 minutes of exercising. 20 minutes of weeding. One small writing assignment. But doing things in these tiny incremements sometimes seems useless. How will I ever improve my physical conditioning doing 10 push-ups today and 20 sit-ups tomorrow? Our large yard is like an overgrown jungle right now; by the time I finish weeding one tiny area, the weeds have already begun to grow again where I started.

Sometimes I get frustrated with this slow pace. I want to jump in and do something fully for a change. This slow pace is completely at odds with my natural tendencies - to go full speed and give myself fully to everything I undertake. I suppose it's been good for me to ease up a bit on my perfectionist side, but this week I just feel like a gerbil running in a wheel and getting nowhere. Except, of course, that I can't run, so I'm more like a gerbil walking in a wheel at a moderate pace and taking frequent rest breaks. See? Even my analogies feel bogged down.

Ah, well, nothing like a good rant. I'm going to try to shake off some of this self-pity now. Hey, there is one thing I can do all-out. Time for some aggressive rest.

You've Got To Have Friends

(Can you hear Bette Midler singing in the background?)

Yesterday, I ran into an old friend that I hadn't seen in four years. I say "old" because I haven't heard from her since a few months after I first became ill with CFIDS. It was strange and uncomfortable seeing her again, and it brought back all sorts of conflicted feelings.

She and I became friends in 1999 when our oldest sons were in kindergarten together. I had just left my 15-year consulting career and was trying to adjust to my new life as a stay-at-home mom. She was an old hat at this routine, and we quickly became friends. In some ways, I felt like I was back in high school. I was the new kid, and she was the out-going, popular one surrounded by an admiring group of friends. My younger son and her daughter started preschool together the following year, and we became even closer, spending hours talking together at one of our homes while the kids played.

Then, in March 2002, I suddenly became sick. We continued to talk on the phone through those first few months, as I wondered what was wrong with me. She invited me to a party that spring, but at the last minute, I had to cancel because I was too sick to leave the house. I never heard from her again.

I was stunned and very hurt. I couldn't understand why a friend would desert me at a time when I most desperately needed support.

In fact, the same thing happened with another friend, an old work colleague. Although we lived in different states, we exchanged e-mail messages several times a day, sharing stories of our kids and sometimes even telling each other things that we'd told no one else. She hung in there with me for quite awhile, but once I was diagnosed and knew that my life now included chronic illness for good, she sort of drifted away. At one point, I tried to renew our relationship. We talked openly about what had happened, and she admitted that she felt uncomfortable with my illness and didn't know what to say to me. I tried to be supportive of her feelings and reassure her I was still the same person. We kept in touch for awhile, but she eventually drifted away again.

Over time, I've come to understand that some people just don't feel comfortable dealing with chronic illness. I know that some of my family feels similarly and would probably also drift away, if they could. I still don't really get it because I like to deal with life in a straightforward and open way, but I at least know that it's them, not me. This has been one of the most painful aspects of living with CFIDS.

I met another friend in 1999. Another mom with a son in my son's kindergarten class. Like me, she was just transitioning from being a working mom to working from home with her kids. We found we had a lot in common, and our kids became very close, too.

Her response to my illness has been quite different. I'm sure she was similarly mystified and uncomfortable, unsure of what to say. But she didn't run away. She talked to me on the phone when I was too sick to go anywhere. She left me a care package during one bad week - some flowers picked from her yard, a book, and a note. No one else has ever done anything for me like that, and I was deeply touched. She even asked me one day, "I'd like to know more about your illness. Is there any information I could read about it so I can understand it better?" That meant so much to me, with so many other people around me wanting to just pretend nothing was different.

She's been by my side during that dark first year, through my diagnosis and adjustment to a new life, and she's now my closest friend. She's come to accept CFIDS as a part of my life, as I've had to myself. She doesn't get upset when I have to cancel plans because I'm having a bad day. We can talk for hours. She shares her own problems with me, so I feel it's a two-way relationship, instead of feeling guilty for being the needy one. She accepts me as I am.

One friend like this is worth more than all the fair-weather friends in the world.