Because He Loves Me!

OK -- I've had a rough week, and boy did my house show it! It was looking definitely worse for the wear. Tuesday, I had my children stay home from school to protest the CTA donating $1.2 million to the no on prop 8 campaign. I thought it would be a great time to rally them together to catch up on their chores.

I then went to Albertson's "going out of business" sale and to Wal-Mart to pick up Halloween costumes. Ooops! Did me in! I was an exhausted zombie after that.

I asked my oldest daughter (she's 17) to spearhead the "Home Blessing Hour" (thank you FlyLady). Nothing. I asked again. Nothing. A third time? Nothing. Finally, I said, "OK, guys, just get your own jobs done today." Nothing.

My poor husband comes home and it looks like a bomb had gone off. Bags of groceries from Albertson's were still scattered all over the living room floor. Every room in the house was a mess. Did he say anything about the mess? No -- but he definitely gave the kids an earful about how they had treated me when I was feeling so terrible.

Yesterday (Wednesday), I covered at the store for my husband to give him a day off. It was a lovely, slow day. It paced itself -- only three customers all day, well spaced breaks in between, few tasks that needed attention. I was really proud that I was able to make it through the day.

When I got home, if you know my husband, you can already guess what I found -- A clean home!!! Yes, the living room was clean AND vacuumed, the kitchen was clean, the loft was clean AND vacuumed -- even the bathrooms smelled better! And his very own special gift to me -- he cleaned out the pantry to make room for all that food I had just bought at Albertson's.

I know it was a labor of love. I also recognized what a blessing it is too have two parents in a family! So often, I feel like I am failing my children. I know that they needed a parent who was strong enough to insist they get their work done. I couldn't do it all week. But when Dad's big booming voice let them know this was not a debate and there would be no room for procrastination, they jumped up and got to work. More than I needed my house clean, my kids needed a parent to be strict and expect more from them.

For the past 15 1/2 years, my husband has worked his tail off so I could be a stay at home mom. That blessing is even more important to me now, while I have CFS. I know I have bad days. I know there are days when I can't be a "good" mom. But, I'm here. At least I can be a mom.

Being a Mom is Making Me Sick!

Now, don't get me wrong. I have a wonderful husband and great kids! But, I have come to realize that there are some aspects of being a mother of six that keep me on the chronic fatigue treadmill.

I would LOVE to be able to really pace myself. In fact, I think it is the key to getting better. I can tell, when I am able to rest when I feel tired and stop before I reach my limits, that I am improving. I am hopeful! Being a mom, however, sometimes I do not have the luxury of resting when I need it.

Here's a sadly too common morning. My daughter doesn't wake up to her alarm. I have mine set as a back up, so I get up at 5:45 am, trudge downstairs, and wake her up. I go back to bed. She pops in to my room, turns on the adjoining bathroom light, does some girl thing in there, leaves. About 6:25, when my two oldest are supposed to have been gone, my son is by my side telling me he needs a dollar for gatorade for his water polo game after school. I hear the door close downstairs at 6:30, but it pops open again at 6:36. My son is in my room again, goes to my closet and takes a handful of candy I have stashed there. He leaves, and I hear the door close again downstairs at about 6:40. I'm pissed they left so late, so I'm seething a little.

My second alarm goes off at 6:50 am, and I wake up the other four children. They trudge into my room for morning prayers. After prayers, one son tells me he's not feeling well. I check his forehead for fever; nothing. He then tells me he's really just tired. I tell him if he stays home from school, he has to stay in bed all day. After some in and out fit throwing, he decides to go to school and call if he doesn't feel well.

At 7:15, he's back in my room. Apparently he can't find his shoes. I send him back out to look. He's in and out, throwing fits, mad that I won't help him look. His little brother finally comes into the room and offers to help. Problem solved by 7:30 when their ride gets here.

My husband gets up and in the shower. First one daughter comes in and asks questions through the door. She leaves, and the other comes in to ask questions through the door. They all finally leave a little after 8. I'm so exhausted, I can't move. I spend the next two hours dozing and waking, looking at the clock, thinking, "I have to get up! If I sleep much longer, I'm screwed tonight!" I finally crawl out of bed at 10.

Add to that all the activities that require my attention, regardless of how tired I am -- helping with homework, nagging about chores, going to parent/teacher conferences and other school related activities, driving them to choir concerts and water polo practice and Scouts and games. I'm not getting better, and as long as I'm a mom, I don't see how I can ever get better.

Two Inspiring Books

Sometimes, with chronic fatigue, you have a tendency to dwell on the negative. As you become less capable and less active, it's natural to mourn the loss of activities you once loved. It is easy to get bogged down in self-pity, and it can easily blind you to the hidden blessings that also come with this disease.

One of the hidden blessings I've discovered is that chronic fatigue forces you to simplify your life. You are simply physically unable to keep up the frantic pace you most likely followed prior to getting sick! You then find yourself taking stock of what is most important to you. It is often surprising to discover just how far back in your priorities these important things had fallen. When you discover "I can't" then all the "have-to's" simply disappear. You are then left with the joy of crafting your life around what is really important to you.

Two books that I find inspiring and helpful are Walden, by Henry David Thoreau, and The Diving Bell and the Butterfly, by Jean-Dominique Bauby. In Walden, Thoreau purposely eliminates everything superfluous from his life and lives in the simplest fashion in a small home he built on Walden Pond. It is interesting to me that he chose the life that I am forced into! His observations are amazing, and it makes me think about my own life and if I am learning such profound lessons from my experience.

The Diving Bell and the Butterfly is the story of a driven, successful man who has a stroke that results in locked-in syndrome -- he is completely paralyzed and cannot communicate by any way other than blinking is eye. In many ways it is a tragedy. In fact, in my book club, most of the women were unable to see past the horrible coffin this man lived in -- the "diving bell". However, what was beautiful to me were the "butterflies" in the story. It left me with the question: when your entire life is stripped away from you, and all that is left is a confrontation with you, how will you respond? To a far less extreme, that is the question that we with chronic fatigue face. This book inspires me to find the butterflies in my own current circumstances.

These are two excellent books, and I recommend them highly to anyone who wants to appreciate life more!

A Lucid Day

It all started while I was reading a book on marketing and advertising. I shared a few quotes with my husband, and then I had a brilliant idea for an ad phrase we could use. Simple, straightforward, to the point. His eyebrow raised a little and he said, "Wow, that was a really lucid thought."

It didn't stop there. I went to church and in Sunday School class, I was asked to be the scribe for an activity we were doing. As people tossed around suggestions, I wrote them down. I then presented our ideas to the class. I kind of reworked the suggestions in such a way that revealed the point behind them. When I sat down, my husband leaned over to me and said, "Wow, that was really good. You did a remarkable job."

I like to participate in class discussions, because I know how much better the lessons are when people share their thoughts. It's easier on the teacher. So, during class, I looked for times I could make comments, and I shared a few of my thoughts.

Later in the day, at home, I was giving the lesson for Family Home Evening. Again, I was able to stay focused on what I was trying to teach, and we had a rather sophisticated gospel discussion as a family -- amazing with six kids ranging from six to 17 with limited attention spans. My husband said, "Kids, I just wanted to point out what a lucid day your Mom is having today! She has really been coming up with some good ideas."

Finally, we went to bed and had an hour's worth of discussion together. We talked about the business, the church lessons, our kids. My husband said, "Wow, look at us, we're having a discussion!"

Ah, a lucid day!

Bad Medicine

I ran out of melatonin a couple of days ago, so I decided to try traditional sleep medicine instead. I chose some generic brand liquid gels. Well, it didn't help me get to sleep at all; my mind was racing with business stuff, and it took awhile to finally fall asleep.

I think I slept soundly, pretty much, but oh my gosh -- waking up was brutal!!! I couldn't do it! I try to get 8-10 hours of good sleep a night; more than that, and I never quite shake off the sleepiness. I finally dragged myself out of bed at 10:00 am, after a good 12 hours of sleep. I could barely make my bed. I know I did yoga, but I don't think I finished it all. I can't remember doing the final back stretches and corpse pose. Did I stop in the middle? Did I get distracted? I just don't know.

Bad medicine! Bad! You are heretofore banished from my home. I'm going shopping for more melatonin today.

A Little Thank You

Oft times, when you have CFS, the littlest accomplishments take the biggest efforts to achieve. Inside, you're cheering yourself and feeling proud. Outside, you're a little embarrassed to be making such a big deal out of such a little thing.

Once in awhile, someone dear to you notices your accomplishments and the effort that went into them. Today is my "recuperation" day. I've been overdoing it all week, so I was going to stay in, maybe do a little laundry, and work and play on the computer. Well, Rom had loaded the empty 5-gallon water bottles in the truck and was hoping I would make the trip out to fill them up. I dashed his hopes and told him I wasn't up to it today.

However, when I went to pick the boys up from school, I was feeling pretty good. I took the boys with me and we filled up the water bottles. We then went to surprise Rom at work. We stayed for a little while, and Rom got a kick out of seeing us.

When I returned home, there was a message for me from Rom on the answering machine. He said he was so happy to see us today; it really lifted his spirits and broke up a boring day. Then, he thanked me very sweetly for filling the water bottles, knowing I wasn't feeling well today. I loved that he noticed it was an accomplishment for me. I felt loved, appreciated, and supported. I am glad I married such a good man!

Chronicling Chronic Fatigue Syndrome

Someone once said that calling this illness (disease? condition? ailment?) chronic fatigue is like calling Parkinson's "chronic shakiness syndrome." Really, the name is embarrassing. People just don't get it. When they hear that moniker, they think, "Ok, well then just go take a nap!" Ah, if it were only that easy!

So, I'm here to chronicle life with chronic fatigue.

What is CFS?
CFS is the elephant graveyard for all diseases that the doctor can't quite put his finger on -- the ethereal, undiagnosable, strange diseases that in the past were labeled non-existent. So, now instead of "You're crazy," we have CFS.

What does CFS look like?
Fat - I weigh more than I did after my 6th child.
Flabby - I've lost muscle. Like Schwarzenegger without a shirt. (Have you seen him lately?)
Old - I've aged 10 years in the last two.
Lazy - My house is a disaster.
Flighty - I am so forgetful! I even get disoriented driving to the store sometimes.
Flaky - Ok, sometimes I just can't do that, even if I promised or I really, really should.
Turret's - When people see my signature twitching, they tense up, expecting me to start swearing a blue streak.
Beaten up - The permanent dark circles under my eyes make me look like I married a wife beater.
Beaten down - I slouch, even worse than when I was 15.

What does CFS feel like?
Think Christmas morning, 6 am, after staying up "playing Santa" until 3 am. That's on a good day. Then, it gets progressively worse, day after day, until "the crash." All functionality flies out the window until I am able to recuperate back to just feeling deathly tired. Mornings are the worst. Opening my eyes feels like peeling off band-aids. You know that feeling you have after a good night's rest, when the baby has slept through the night, and no one climbed into bed with you, and you wake up all by yourself without the help of the alarm, and you feel so good and refreshed? I haven't felt that in two years. Add to that regular headaches (minor to moderate) and a debilitating migraine every month or two. Also throw in some daily aches and pains and little annoying illnesses like sore throats, sniffles, a cold, and the flu.

What does CFS sound like?
"Um, we think it may be perimenopause... hormones... too much/little progesterone/estrogen/testosterone (what?!)... hypo/hyperthyroidism... anemia... nutritional deficiency... migraines (ok, yes, but only as a symptom, not as a diagnosis)... depression... inactive/overactive adrenal glands... MS... seizures (Ok, you know it's bad when you're disappointed it's not a brain tumor -- at least they could cut the stupid thing out and I could GET BETTER!!!)... blepharospasm... hypoglycemia... sleep apnea..."

What helps?
Yoga. Arbonne. Lowering expectations. Knowing my limits. Pacing myself. Priesthood blessings from my husband. Being aware of how much I'm still contributing.

What doesn't?
Trying to play catch up. Comparing myself to "superwomen," including who I used to be. Over-committing. Setting my expectations too high. Praying to make this go away. Trying to make everyone happy. Yo-yo dieting... BUT I STILL DO IT!