Oh, but we do have fun!

Yes, that's me, my youngest son, Craig, and my husband, Ken, wearing togas. The last few days have been hectic and crazy but lots of fun. It's been one of those weeks filled with school projects and functions, requiring non-stop activity. And, yes, I'm crashed today, but it was worth it. The kids had a blast, and so did we.

On Tuesday, we kicked off our odyssey with the usual school-day stuff, plus an orthodontist appointment, my Mom arriving on the train, and Craig's spring concert at the elementary school. But the real scramble came on Wednesday.

It was Greco-Roman Night at Jamie's middle school. The 6th graders had to make a recipe from Ancient Greece or Rome and bring it to school to sell in a bazaar-like atmosphere to raise money for an end-of-year activity. Jamie and his best friend, James, chose Shrimp in a Honey Glace (which I encouraged due to its quick preparation!) and also sold iced mint tea.

Now, we're not ones to do things half-way, so when the instructions said to wear a costume, we of course assumed it applied to the entire family. My Mom and I spent the day figuring out how to fashion togas from fabric we bought on the $1 table at the fabric store. Ken picked Craig up from soccer practice, stopped at home long enough for me to wrap them up, and the five of us headed to the school.

Would you believe we were the only adults, among the families of 300 students, who dressed up? You might think we'd be embarrassed, but we got into the spirit of the evening and had a great time.

So, today it's payback time. The middle school gathering had all of the characteristics that someone with CFIDS fears most: big crowd, warm room, lots of noise & chaos, and a full hour of standing with no chairs available. I had pulled through the previous days' high activity by shutting myself in my dark room several times a day to nap or meditate, and I made it through Greco-Roman Night. By 9 pm, though, I was in bad shape. I had so much pain in my legs and back that I thought I'd never fall asleep (thank you, Ambien!).

I'm in recovery mode today, not trying to accomplish anything and lying down as much as possible. All things considered, I'm not doing too badly. And we have more happy, laugh-filled memories to add to our family album.

A Life of Contentment, with Pockets of Despair

I have always loved my life. Perhaps that sounds like hyperbole, but it's not. At every stage of my life, I have thought that my life was pretty much perfect. I have always felt fortunate and blessed. Oh, sure, I had problems, just like anyone - the usual high school angst, nasty break-ups with boyfriends, overwhelming times at work, difficult colleagues - but these always seemed like minor detours in an otherwise happy journey.

There have been times throughout my life when I have felt so utterly content that it almost scared me. I felt so fortunate, so blessed by my perfect life that I would occasionally think that it couldn't last. A person couldn't possibly have such a happy life without some kind of major challenge cropping up. I mostly felt content and satisifed, but there was a tiny part of me that was waiting for the other shoe to drop.

And then, of course, it did. On March 2, 2002, I suddenly became ill with the "flu" that never goes away. It would be a full year before I was diagnosed and understood that I now had a truly chronic illness, with no known cure. Like so many other people with CFIDS, my life now seemed neatly divided into "before" and "after." I dealt with some serious depression in those first two years, something that stunned me. I had rarely even felt unhappy before, so I was completely unprepared for the dark curtain of despair that seemed to be taking over my life.

Those days are thankfully behind me, but I am still sometimes ambushed by small pockets of despair. I am mostly still content with my life, perhaps even more aware of and grateful for my blessings. I often tell my husband that, despite the challenges we're now living with, I still love my life. I still feel blessed by him and our boys and still find joy in every day.

Sometimes, though, like last night, my symptoms worsen and my contentment is drowned by a wave of despair. I think that I can't live with this illness any longer, that I can't possibly go on coping with the battle inherent in every moment of every day, that it's just too much. I sob for all that I've lost and for the unfairness of it all.

That overwhelming darkness always passes, usually fairly quickly, but those feelings remain as a black spot on my otherwise happy life, never far from my consciousness. I've come to realize that my life has never really been perfect. My contentment is more the result of my outlook rather than some unusually good fortune. I can still carry that optimism and joy with me now, even in the shadow of this never-ending disease. The battle is not only in my body, but in my mind, as I struggle against feelings of self-pity and helplessness and try to hold tight to my life of joy and contentment.

Great Expectations

Well, it's Friday, and once again, I've accomplished nothing that I set out to do this week! I'd like to blame this problem on CFIDS, but the truth is that I've been over-estimating my capabilities since the days when I had boundless energy (and still couldn't get "everything" done). I've tried hard to scale back my expectations now, but I'm still planning far more than I am capable of and coming up disappointed.

Here's the list of what I thought we might do during this Spring Break week (keeping in mind that we returned from out of town on Monday night). Seriously, I really wrote these things down last week:

• Help Craig with Market Day project for school
• Help Jamie get ready for Greco-Roman Night project
• Go to craft store for supplies
• Get boys new shoes
• Take boys to Target
• Go bowling (we got a free coupon in the mail)
• Paint dining room?

Guess what? We didn't do a single thing on this list!! The only evidence of a touch of sanity in this list is the question mark about painting the dining room (since we've only managed to paint 3 rooms in our 11 years in this house). And we will still have to tackle those school projects this weekend.

Looking on the positive side, here are the things we actually did do this week:

• Unpack & do laundry from trip
• Buy groceries
• Go to library for books & DVDs
• Take old books to used bookstore (including a full shopping bag that had been sitting in our office for over 5 years!), with plenty of time for browsing and using our ample credits
  
• Watch "The Sound of Music"
• Go to a baseball game
• Make meals & do dishes, ad infinitum

Plus, I rested a lot, and my boys spent several days playing with their friends in the woods behind our house. All in all, a pretty nice week. I don't know if I'll ever get the hang of accurately planning my time, but at least we always seem to have fun!

A Preview of Summer

It's Spring Break week here, and I'm getting a preview of what summer will be like, with my boys out of school and a string of warm, sunny days.

The absence of schedules and timetables has been wonderfully freeing. I've been sleeping as late as I need to in the morning, without worrying about making lunches or scurrying for the bus. I certainly haven't missed my several trips a day to middle school to try to keep up with Jamie's rotating schedule, get him to every class he's able to attend, and squeezing in home tutor time in between. We're all enjoying the break from hectic evenings of homework and strict bedtimes.

So, it's been nice in many ways, and I'm counting the days until June! But, as always, the specter of CFIDS is there to remind me of all that I can't do. I'm remembering how exhausting it is for me to have the boys around all day. Even with Jamie's crazy half-day schedule and Craig's frequent absences this year, I can still count on some quiet time to myself most days. It took me three days and three tries just to write and post yesterday's blog!

I'm frustrated by my limitations. I want to enjoy my boys' company, take them places, do things, just be a regular Mom. Instead, my body constantly reminds me of my illness by striking me down after any period of freedom and fun. I crashed after an ordinary day at home on Tuesday, just from being on my feet too much - cooking, doing dishes, running errands.

I took it easier on Wednesday so I could manage taking my kids to a baseball game in the evening (my husband had to go out of town again). My strategy worked,and I handled the outing to the game just fine. In fact, we had a great time, the kids ate their way through 9 innings, and our home team won. Then we came home and I put them to bed and reality set in. I was suddenly aware of excruciating pain in my legs and feet and an overwhelming exhaustion coupled with a strange kind of nervous energy. I woke up in the middle of the night in terrible pain and had to limp to the bathroom to re-medicate myself. Today, I managed to send the boys to a friend's house for the day, while I lie in the quiet house and try to recover.

On the plus side, the boys seem to be handling the heavy activity this week quite well, giving me some optimism that they'll be able to have a good summer. I guess I'll just have to get better at "staying within my energy envelope," something I seem to find just as hard to do today as four years ago, when I first became sick. Time to go pick up the kids.

Home for the Holidays

We spent the Easter weekend in Rochester, NY, (where I grew up) visiting my family. It went as these trips always do, starting out enjoyable and ending with a crash.

I actually enjoy the 8-hour drive there and back, as does the rest of my family. We listen to favorite music and audio books, munch on snacks, and take naps. Even my husband, who does all the driving on family trips, enjoys the ease and solitude of the four of us together in our cozy truck.

So, I felt good, really good, when we arrived Friday evening. We met my family for dinner. It was lots of fun, I was glad to see everyone, and I wasn't even too upset about having to avoid dairy and alcohol in an otherwise delicious meal.

Saturday was a little rougher but still nice. I woke up feeling exhausted (I sleep so poorly when I'm away from home, like a little old lady), and I was back in bed by 10 am. That helped, though, and we enjoyed spending the day with my dad and his wife and my aunt and uncle. We took a nice walk in the park, enjoyed the beautiful day, and had another delicious meal at my aunt's house. Despite it being a 2-nap day, it turned out pretty good.

I crashed on Sunday, predictably, I suppose, after climbing hills in the park with the boys the day before. I also made the mistake of going to church. I thought it would be nice to join my family for Easter Sunday service and hear my little cousins sing in the choir. And it was nice, but the hour and a half of standing (always a killer) and sitting up knocked me out. This time, a nap didn't do much to revive me.

I spent most of the time at our family dinner lying down in a quiet room alone. My throat hurt, my legs ached, and I had that all-over flu-like feeling that signals a bad crash. My husband and sons were out in the yard with their cousins, aunt & uncle, and grandparents playing a rousing game of soccer after dinner. I was in the living room, with my feet up, hanging out with the over-80 crowd. Holidays seem to do this to me. It can get a little depressing, although I rebounded the next day, with another 8-hour drive to keep me off my feet. Sometimes I just get so sick of feeling sick so much.

Exercise and CFIDS in the Real World

With the nice spring weather that's recently arrived, I'm inspired to try to increase my stamina a bit. I know I've lost a lot of muscle tone in the past few years, and my exercise capacity is quite low right now. Before CFIDS struck, I exercised hard and loved the feeling of strength and energy it gave me. I want to improve my stamina a bit, so I can hike with my family this spring and summer and enjoy our camping trips and vacations.

Theoretically, it seems simple: walk a short distance each day, gradually increasing, and do very brief sets throughout the day with light weights to try to rebuild some muscle. Unfortunately, this is almost impossible with the constraints of CFIDS in my everyday life. I think I could easily improve my level of conditioning if that was all I had to do each day.

But with CFIDS, every movement, every moment on my feet "counts" as exertion. I can only handle a limited amount of exertion each day, and it's almost always used up by the basic activities necessary to take care of myself and my family.

Taking a shower counts as exertion, doing a load of laundry, making meals - however simple, and doing dishes. Once I've taken care of these basic needs, there's often no capacity left for focused exercise that could help to improve my stamina instead of using it up. On a good day, when I might be able to take a walk or do some easy weight training, I instead need to go to the grocery store or handle other errands while I'm able to.

It's very frustrating. I was determined to start some easy weights today, but here I am with aching knees that signal I've already done too much for today. I guess making breakfast and washing dishes was it. I still need to somehow get through dinner preparation and clean-up this evening, too.

For me, the exercise/exertion intolerance is the worst part of CFIDS. I also believe this is at the heart of this unique illness and that understanding this bizarre phenomenon will ultimately help to unravel its mysteries. For now, though, I sit here in the recliner, with the footrest cranked as high as it will go, and hope that I'll make it through dinner tonight without completely crashing.

Emotional Highs and Lows

We had a short-lived freak snowstorm yesterday. The black sky suddenly filled with fluffy snowflakes that coated the blossoming trees and new daffodils in our yard. This bizarre juxtaposition of winter and spring mirrored the emotional ups and downs of my week.

I started the week filled with energy, a rare condition for me since CFIDS but immediately familiar as "the real me." I felt good and ready to tackle my week on my own while my husband, Ken, was away.

My in-laws called Wednesday evening to tell me that Ken's uncle in South Dakota had died suddenly. After I hung up, grief settled on me like the snow that had covered our flowers earlier. Uncle Myron was a gentle, fun-loving person with a kind heart. We thoroughly enjoyed our visits to South Dakota, sitting on the porch with him and Aunt Betty. I couldn't believe we'd never see him again.

It was even worse on Thursday when I had to tell our kids. We've lost eight people in our families in the past three years, with two very tragic and difficult deaths from cancer in the past year. Our boys have experienced far too much loss and grief for their young years. They were both shocked and distressed at the news of Uncle Myron's death.

Of course, the grief affected me physically as well. In fact, all three of us have felt poorly for the past day or so, with sore throats and heavier-than-normal fatigue. I think the spring allergies are affecting both boys, and I crashed from combined physical and emotional stresses of being alone and absorbing such a loss.

At the same time, I was in the midst of a happy project, putting together a unique box of gifts for my oldest friend's birthday. Michelle turns 40 on Saturday, and we've been close friends since we were five years old. Earlier this week (procrastinating, as usual), I decided to make her a box of memories to ship to her in Ohio.

I had a great time coming up with all sorts of silly remembrances of our many years together - a package of Pixy Stix (I couldn't find wax lips in our local stores!), a Clue game (one of our old favorites), a childhood movie we'd watched together, and other tidbits that reminded me of her. Best of all, I found an old cassette tape in our basement that I had sent to her when I was in sixth grade. My boys and I laughed like crazy at my childish voice reporting all the news from school and home to my best friend. I capped off the package with a homemade poster featuring photos of us, pictures of things we'd shared during our 70's childhood, and captions and phrases sure to bring a smile to her lips.

I had so much fun putting that box together! I know that I ran around too much for a few days, but I was smiling despite my growing symptoms.

The emotional changes this week have made my head spin. Ken is flying to his parents' house in Oklahoma from Texas tonight to accompany them to the funeral service in South Dakota. He won't be home until next Thursday. I'm doing my best to rest and recover, so I can handle another week on my own. At least I feel like I'm contributing a bit; it's very difficult to be so far from family during times like this.

So Much To Do, So Little Energy

Back to reality today. After all my exercise this weekend and the stress of re-entry on Monday, I crashed pretty badly yesterday afternoon. By evening, I was in rough shape, with a sore throat, achy legs - all the usual stuff.

I also had a major orthostatic intolerance (OI) episode. I was just lying on the couch watching TV when I could feel my face redden and flush, and I suddenly felt sicker. Those kinds of episodes are so bizarre! I drank some salt water to try to bring my blood pressure back to normal, but my face was still bright red when I went to bed.

I'm taking it easy today and am doing better this afternoon. While my body is resting, though, my mind is going on high speed. I tried to stay off the computer this morning and lie down. I made list after list on a notepad: writing ideas, book reviews I want to write, new magazines to query, things to get done at home. Now if only I could get some of it done!

On the plus side, my psychologist is fond of telling me that it's a sign of good mental health to want to do so many things. She specializes in chronic illness and has a grown son with CFIDS, so she understands, first-hand, the unique challenges of living with this crazy illness. She says people who are depressed often don't want to do anything, but people with CFIDS or other chronic illnesses usually have long lists of things they want to do, if only they could. Judging by the length of my lists, I must have a very healthy psyche!

So, with all of these projects I want to work on, why am I using up my limited energy on my blog today? Hmmm....good question.

The Great Escape

Our camping weekend was wonderful! Here's our home away from home, our little pop-up camper. We went to French Creek State Park in Pennsylvania and enjoyed the spring weather. We hiked, relaxed, and the boys did a little fishing (as opposed to catching, as my husband Ken said).


I felt really good most of the weekend. Even my allergies quieted down. It's no big mystery, really, just more evidence that stress affects CFIDS more than anything else. When we're camping, we're so relaxed. There's nothing to worry about. We have just a tiny little space to take care of, our meals are pre-planned and simple, and there are no competing distractions. No phone, TV, computer. No schedules or errands to run or to-do list to worry about. The four of us just exist in a peaceful, easy world when we're camping. And what could be more relaxing than sitting around a campfire at night?

We also had fun going on a geocache hike on Saturday. Some of our cousins got us hooked on geocaching last year, and the boys got a GPS from their grandparents for Christmas. Now, wherever we go, we enter coordinates into our GPS and go hiking to look for the "treasure" that's hidden nearby. Of course, we have to be careful to choose short hikes (we had to pass up on some great multi-caches this weekend), but it's still great fun.

Back to the real world today. Ken left yesterday for a week-long business trip - always a challenge for me. I've stocked up on easy meals and am hoping my good health holds out for the week. The toughest part is mornings. I have to get both boys out the door to different schools at roughly the same time. Ken handles a lot of the morning routine, since I'm usually a slow starter. The boys and I were like a finely tuned military operation this morning - up at 6:45 (felt like 5:45 because of Daylight Savings Time - yikes!), out the door at 7:25, drop Jamie off at middle school, back home in time for Craig's bus to pick him up at 7:50. Whew. We did OK this morning, but wish me luck for the rest of the week! Have to try to recall that peaceful feeling sitting around the campfire eating s'mores...