Schooled

Answer:  Christmas, the time change, and back-to-school.
Question:  What are "Things That Kick My Butt."

Oh, I mourn the end of summer.  I'm one of those moms who enjoys having their kids around.  Do you know that I did not hear the words "I'm bored" once?  Lazy days spent together, working on a puzzle or lounging in the pool.  It was delightful!

Then comes the mad dash to get haircuts, school supplies, and new clothes.  Worry keeps me up the night before, and then the dreaded alarm clock rudely demands I wake before my body tells me it's time.  Of course, I can't get back to sleep after, either.  Disrupted sleep and stress are taking their toll.  I'm dragging.  My energy window has caved in, and my activity threshold is almost non-existent. 

So once again, I must rein in my enthusiasm.  Be patient, and nurse my body through these changes.  Patience, bah.  I've been excited about testing my wings.  I want to begin small excursions out of the house.  Just half an hour, say to the park or just sitting at the mall, once a week.  It looks like that will have to wait a little bit longer.  Once again, this disease reminds me who's really in control here.

Perspective

I believe that God led my husband to me.

Seriously.  The night we met, my husband had already had a date lined up.  But as the day progressed, he started feeling like he shouldn't go.  It was a persistent feeling; he thought maybe it was God trying to warn him that he'd get in an accident or something if he went.  Reluctantly, he called the young lady and canceled their date.  It was the first time he'd ever done something like that.

Now, with no plans for the evening, he had to scramble to find something to do.  Some of his friends were going to a church dance that night in Pacific Beach (San Diego).  They persuaded him to come with them.  He arrived late; it was after 11 o'clock.  He made the rounds, saying hi to the people he knew.  And then he saw me.

He knew the minute he saw me that I would be his wife.  He approached me and asked me to dance.  I said yes.  :)  We danced the rest of the night together.  He asked me for my number, and I wrote it on a gum wrapper and tucked it into his shirt pocket so he wouldn't lose it.

The first few dates we had, we talked like crazy.  He didn't even turn on the radio during the first few dates (and this is a man who loves music).  I had been planning on going up to Utah to go to BYU in a couple of months.  He decided he would quit his job and follow me up there.  I believe he would have followed me to the ends of the world, just to be with me.

It took him a mere three weeks to convince me to marry him.  I changed my plans, stayed home, and we were married December 10, twenty-two years ago.  Since that time, I would say that our marriage has fluctuated between really good and freaking amazing.

Why am I going through this story now?  Well, I have been participating in ItStartsWith.Us 's Love Bomb project.  Each week, I get an e-mail telling me of someone who is going through a hard time.  Then I, along with hundreds of other Love Bomb participants, drop by that person's blog and leave an encouraging comment.

This week, the person receiving these Love Bombs is a young woman who has been married for seven years.  She has two young children, and she is pregnant with her third.  And her beloved husband died just a few weeks ago in a hunting accident.

And suddenly, I'm thinking, I'm OK with CFS.  I don't mind it at all.  I wouldn't care if it continued to progress until I was in bed, like our dear friend Laurel, or until my eyesight failed, like our good friend Kerry.   I would only hope to face it with the courage and hope that they have.

And I'm OK with the financial troubles we've gotten ourselves into.  If we went bankrupt 60 times over, or ended up living in our van, I'd be OK with that.  And even if my kids get into trouble, struggle with drugs or teen pregnancy or failed grades or whatever, I can handle that.  Because I have my husband, that wonderful man who loves me enough to cross any ocean, climb any mountain, or stay by my side through any suffering I may endure.

Overdoes It

I overdid it yesterday.  How, you may ask?

I did my stretches and yoga.  I threw a turkey in the oven.  I folded TWO loads of laundry.  And I roasted some vegetables.

My sweet 13-year old daughter hugged me after dinner and said, "Boy, you really did a lot today, Mom."

*sigh*  This is why the type-A person inside of me is climbing up the walls.

Grieving

It's hard to go to the doctor's and tell her what's wrong.  It's hard to tell anyone what's wrong, because I spend so much of my energy, so much of my waking hours burying the problem, pushing it under the surface, trying to minimize it so I can have a normal life. 

Pain?  Sure, there's pain, but I've trained my mind not to dwell on it.  Yes, I'm so tired my bones and muscles barely function, but I sit at my computer and write, or play games, and I trick myself into thinking that I'm lazy and wasting time, when really, it's the only thing I can do.  I sit on the couch and crochet while watching TV, and I talk with my girls, not acknowledging that I am here because I can't get up, walk over, and stand in front of the stove for 15 minutes cooking dinner.  Or even stand there long enough to pop the freaking corn dogs in the oven.

I nag at my boys, insist they get their jobs done before going outside, pretending I'm just being a good mom teaching them responsibility, when really I'm begging them inside, please, do this, my work, for me with a cheerful heart.  Please, little child, help me, because I am more helpless than you.

How long, my God, my beloved Father?  How will you know when I've suffered enough?  Ho will you know that it's too much for them?  People have lived with this disease for decades, although living is perhaps too strong a word.  How much longer for me?

My CFS Is So Bad...

*audience yells* ... How bad is it?

My CFS is so bad, it got kicked off Oxygen's "Bad Girls Club."
It's so bad, it was featured last night on Fox's "Cops."
It's so bad, rebellious teenage girls want to go out with it.

My CFS is so bad, it's not funny.

Yesterday, my dear friend Josie took my boys to Cub Scout Camp for me.  I got a phone call at 9:00 am.  Apparently, you had to wear tennis shoes, and my ten year old was wearing sandals.  She said she'd come by, pick up his tennis shoes, and drive them back out to him for me.  See?  She's a sweetheart.

But then, I had to scour the house looking for the stupid tennis shoes.  Upstairs, downstairs, a good three times, braving the contents of his closet, looking under blankets, looking under the kitchen table, checking the shoe basket, where they should be.  I finally found an old pair that probably didn't fit anymore, and that was the best I could do.  All this took less than fifteen minutes.

And it did me in.  Stick a fork in me, I was done.  Long morning rest, long afternoon rest, early bed time, and I was still wiped out.  All from a little shoe searching.

I've noticed this relapse isn't relenting.  I think I may need to face the fact that this is my new normal.  It is what it is, and it's time I accept it.

Adjustments

How am I doing with my Daunting Things?  Hm, let's take a look...

1. Super-Walmart:  Sent my son.
2. School registration:  Sent my son.
3. Back to school shopping:  Ordered online for my younger boys; let my son take my girls shopping.
4. Visit from my sister:  Suck it up.  It was only three hours (ha!  only!), and I rested up tons the next day.
5. Carpooling: Still have three weeks before school starts.
6. Sleep over:  They ended up at their friend's house instead.
7. Tidying up:  Had my kids do it.
8. Taco salad:  Had my kids do it, with managing instructions from me.

Have I mentioned how much I love and appreciate my kids?  My son has been such a sweetheart, running all over for me now that he can drive.  And they loved learning how to make taco salad.  It helped that I called it "Chef School."  I love that my kids "get it" and do what they can to help our family adjust to my disease.

Eventful

As many of you may have noticed, I don't post very often when my health isn't doing very well.  And, well, I've been pretty spotty for some time now.  I know my CFS well enough now to recognize the culprits:  two big, important, stressful events.

The first was way back in May.  The reason I didn't get to post for ME/CFS Awareness Week was because I was wiped out from a speaking engagement.  That's right -- I was invited to speak to my congregation at church, and I accepted.  The topic I was given was vague.  It was to talk about the blessings of the gospel.  When I was invited, they suggested that I use my perspective from the trials I have.

I knew that many of my church family did not understand why I suddenly was not coming out anymore.  I felt like they deserved a solid explanation, for everyone's sake.  So, I went into detail about what my life is like with CFS.  Then I shared with them how much the Lord has blessed me and helped me shoulder this burden.  I described the hidden blessings I have found through CFS, many of which I mention frequently here on my blog.  I told them that I know God is mindful of me, and He loves me and takes care of me through the miracle of my loved ones.

I was raw and vulnerable after sharing this with oh, about 200 people, some whom I know didn't "believe" in CFS.  But I had a very positive response afterward, and more importantly, people finally understood.  CFS is no longer the elephant in the room.  They can ask questions and treat me like a normal person again.  It was worth the very severe crash that followed.

The second event was just two weeks ago.  My in-laws celebrated their 50th wedding anniversary.  I was unable to help with the majority of the party planning and preparation, but I did volunteer -- yes, that's right, volunteer -- to put together a 400-picture slide show.  That meant going through several hundred photos, selecting the right ones, scanning, saving, cropping, touching up, and putting them all in the program I was using.  It was exhausting, especially since the Howells are procrastinators and I got a lot of photos last minute, but the end result was fantastic.  I felt like I had pulled my weight, even though I did no cooking, setting up, or taking down.

The night of the party entailed an hour and a half drive out to the desert, the stress of family relations (I know you know what I'm talking about!), standing in the heat for numerous family photos, and another hour and a half drive home.  I only stayed about two hours, by which time I was shaking and crying and leaning on my husband for dear life as he walked me to the car.  My son drove me home.

Of course, I crashed.  Just when I was finally starting to recover from my May crash.  Frustrating!  But worth it.  See?


The good news is that I have no more events.  I've taken a hard stance for my health.  I have skipped my beloved water polo games, and I have broken my boys' hearts by saying no to soccer this season.  I'm giving myself time to heal.  And I will keep you posted on my progress.

The Loneliest Summer

Summer has always been my favorite time of year.  Growing up, I had endless freedom to explore and create my own adventures.  Popsicles, lemon aid stands, bicycles, sprinklers, crawdad catching, hiking, swimming, ghost stories under the lamp post at night.  I grew up, and I transferred my love of the summer to my children and lived vicariously through them.

Well.  CFS changes everything, doesn't it?  The Summer of No has turned into the loneliest summer.  Our 4th of July tradition when I was a kid was to spend the entire day at the beach.  We would build a big bonfire as evening fell.  We'd eat roasted hot dogs and marshmallows.  We'd pile up in camping chairs and under blankets as the temperature dropped and the night darkened.  Then we'd watch fireworks off the pier.  We'd fall asleep in the car on the way home, and my dad would carry each of us into the house and tuck us into bed.

What would I have done this year if I had been "normal?"  I would have enjoyed watching my kids in the 9 am bicycle parade, followed by water games and adult gossip at my neighbor's house on Saturday.  That night, I would have taken my kids to the secret dirt lot that is just perfect for watching the "early" fireworks.  Most of my friends know about this secret spot; we would have had little ones running around with glow sticks and necklaces, a table of snacks, and more adult gossip.  I would have gone to church with my family Sunday morning.  Then, in the evening, I would have watched my eight year old son participate in a patriotic choir performance.  I understand he was the loudest one singing in the first song, but he didn't yell.  The second song, he wasn't the loudest, but that's just because Julia was yelling, and that doesn't count.  (As described by my ten year old son.)  After that, I would have joined my family at another secret location to watch the big fireworks displayed from the city.  I would have tumbled into bed exhausted and happy after so much time spent with family and friends.

But I didn't.  Saturday, I stayed home and worked a little on my novel while my kids played video games.  I made them do a little housework; I did a little laundry.  Sunday, while the rest of the family was off enjoying the festivities (because my husband is wonderful that way), I watched multiple episodes of What Not To Wear and HGTV Design Star.

Sometimes, I really hate this disease.

The Summer Of No!

I've noticed a pattern in my CFS life.  I avoid the hard "no."  This would be anything where someone else's needs are in conflict with my own. 

Say I'm determined to get to bed earlier, but my husband is enjoying my company as we sit together on the couch watching TV.  I love sitting on the couch with my husband watching TV.  So, I end up going to bed one or two hours later than I should have.

Or maybe one of the kids comes up to me and says, "Mom, can I _____?" (insert activity that requires me to drive them somewhere.)  I already have so much guilt over all the nos I've already said, so even if I'm tired, I'll probably say yes.

The hardest of all, now that summer is here, are the invitations.  Weekly swim parties.  A Fourth of July barbecue.  Family dinners.  I so badly want to say yes!  Maybe if I pace before and after?  I don't know.  The best thing is for me to Just Say No.  I may be able to tolerate a tiny bit of yes, if I limit it to one hour or less, once in awhile.  But I'm afraid I'm going to have to learn to embrace the hard "no."

So, here it is:  No, I cannot make family functions right now, unless it's a once in a lifetime event, like my in-laws 50th wedding anniversary.  Even that, I'm taking off early.  No, I can't make it to your party.  No, I can't drive you places.  No, I can't stay up any later.  No, I can't.

Embracing the Summer of No!

Walking Through a Meadow

I feel so sorry for people without CFS.

That's right, I said it.  And I seriously mean it.

My husband took my boys camping last night for the Fathers and Sons event that our church does every year.  The boys are always excited about it.  They love spending time with their dad.  The girls and I, meanwhile, do a Girls Night Out.  Except this year they went out and brought it all home to me: Mexican food, smoothies, a movie, and Twizzlers.  We had a good time.

Well, it's barely past 9 am, and my husband came home with the boys!  What the...?  Apparently they got bored and wanted to come home.  My two youngest are already playing video games, and my oldest is in the shower.

Now, I remember camping as a kid.  It was not action packed all the time.  I loved sitting under the trees, listening to the birds, feeding squirrels and chipmunks, reading a book.  Sometimes we went for a hike or played a board game together.  Overall, it was pretty laid back.  And relaxing.  And soothing.  I loved it.

How sad that my guys couldn't decompress like that.  And suddenly, I thought -- I feel sorry for people without CFS.  They are always going, going, going, and they miss so much of life because of it.  It is like they are traveling by plane everywhere they go, but I am wandering slowly through a meadow.  Sure, they get farther and get more done.  But I see more beauty and find miraculous things along the way.

Being Thankful

Well, I haven't been blogging much lately. I'm afraid I've been in survivor mode lately, curled up in a figurative (and sometimes literal) fetal position. But I couldn't let Thanksgiving pass without a comment!

I love the fact that Thanksgiving comes before Christmas. Pondering the many things I'm grateful for puts me in the right frame of mind to enjoy the true spirit of Christmas. You may think that CFS has made it a little more difficult for me to be thankful, but it's really not true. If anything, it has made it easier.

CFS has given me many small blessings and one great gift. I have, throughout my life, had great burdens that I carry. Because of my faith, I do not fear death -- in fact, I have often yearned for it. I've thought how wonderful it would be to leave behind the pain and suffering of this life and return home to my Father and my Savior. At times, the only thing that has kept me here is the feeling of six pairs of small hands and one pair of large, gentle hands holding onto me like many balls and chains. Oh, I've wanted to go! But what would happen to them? I've begrudgingly stayed.

The onset of CFS has taken life away from me, little by little. And I've come to realize -- how could I have taken so much for granted? Every little morsel I can enjoy now is so sweet to me. There are a million tiny moments full of life that I never paid attention to before. A hug from my tween, a kiss on the top of my head from my big boy, cuddling on the couch with my husband, stepping outside to a warm, clear, star-filled night, waking up to blue skies and warmth, a thank you from my big girl at college, my boys climbing into bed with me, the little ways they all try to make life easier, better, happier for me.

I believe that this will someday be over. One day, I will no longer have CFS. I'll be able to engage more in life and her bountiful activities. I will be careful in what I choose to do with my precious energy. I will not waste it on things that do not bring me joy. I will not clutter my life with the unimportant. I will savor the moments. I will stay as long as God allows, and when He finally calls me home, I will leave this life with one last, fond glance over my shoulder at this beautiful adventure.

Hanging on to Dear Life

Do you remember that children's game, Crack the Whip? You all hold hands, and the leader runs around, pulling everyone along. It's quite fun, unless you're the one at the end of the line. I feel like life is playing Crack the Whip with me, and I'm just trying to hold on!

I did something crazy this year. I signed my two younger boys up for soccer. In my defense, I signed them up in May, when I was feeling relatively well and expected to be feeling better by September. I didn't realize I'd be having a downturn in August that wouldn't relent for quite some time.

So, now here we are -- my boys have soccer practice Monday, Tuesday, Wednesday, and Thursday afternoons. We have games on Saturday. Can I just tell you how much they love it? My youngest son had never played before. He was so nervous his first day of practice! By the end of the hour, his eyes were shining and he told me, "I love it!" He is ready for practice half an hour before we have to leave. He asks me, "Is it time to go yet?" every five minutes. My older son isn't as fond of practice (because you have to run). But he loves playing in the games! He scored his first goal yesterday, and he was so proud! He is quite a natural at it -- he isn't intimidated at all, he has a good sense of the field, and he has some pretty good moves.

How could I not give them this little piece of normal childhood? Yes, it's killing me, and I don't have time for anything else (shopping? cooking? cleaning? bah, who need's them!), but I had to do it. I just had to.

I'm still working Tuesdays. My husband and I both wish I didn't have to, but there are no alternatives in sight. My husband, wonderful man, has taken on so much to ease my burdens, he is at near breaking point. If he worked my day, too, that would mean six days at work a week, plus the extra duties at home. We can't afford to hire someone else, especially when the people we've tried in the past have been so ineffective.

My oldest son was in a bike accident a couple of weeks ago. The front wheel of his bike came off, and he hit the street at relatively high speed with his face. He suffered lacerations, abrasions, a broken tooth, and a broken nose. Luckily, he was wearing sunglasses, because they were destroyed but saved him from damaging his eyes. My husband was at jury duty and I was at work the day it happened. Of course, I closed down the store and spent the day with my son in the emergency room. He looked so terrible -- we jokingly called him a zombie. I thought I was holding up pretty well for him. But, when my husband finally got back and relieved me at the hospital, I broke down completely sitting in my car in the parking lot. Boys! If they don't kill themselves, they'll kill their mothers.

I tried to go to church today, even though I knew I wasn't up to it. I love the feeling I have when I'm at church. I stopped to talk with a friend, and half way through our conversation, I was crying (I'm an emotional wreck on my bad days!). I stayed for about 15 minutes, just enough time to take the sacrament. While I was there, I saw familiar faces and the familiar routine of people going about, serving, teaching their classes, taking children to the bathroom, etc. Oh, how I miss it! I ache.

So, I'm just hanging on right now. Barely hanging on.

Catharsis

Ah, as you all know, I have been in the middle of a nasty crash for some time now. It has, quite frankly, scared me. I had been used to bouncing back rather easily from stress-related and exertion-related mini crashes. I expected the same from this one... but it didn't exactly go that way. So, relying on many of your own experiences and suggestions, today I did a little personal exploring.

I sat down to write about my current stresses to confront the emotions surrounding them. There are several swirling around my psyche these days -- back to school, soccer for the boys, a new school for my struggling son, the economy and our new business, a messy house. But as soon as I started writing, the only thing that my pen would allow to find its way to paper was my daughter who is now off to college.

I am happy for her. I am proud of the young lady I have raised. I feel she is ready for this next step in her life. I know she will excel. I know she is in a good place. I am excited to see where she takes this adventure and who she chooses to become. I love her so much.

Then, the image that came to my mind was not my teenager who just left home, but my baby as I first held her in my arms. I thought about our special relationship as she grew to be a toddler. I remember our wonderful friendship and how everything about her was delightful to me. I loved being a mom! I caught myself thinking, "I've never been happier than during those early days of motherhood."

I broadened the picture in my mind and thought about what was going on in my life back then, and I realized it was not an easy time for me. It wasn't the bliss I was painting it to be. I, like many others with CFS, had been abused as a child. Having a child of my own brought up suppressed emotions, and I began dealing with the issue for the first time ever. It was beyond painful -- it was excruciating. There were times when I thought I would lose myself in the pain of it all and just stop being. My husband was remarkable, loving, and supportive ... but it was in the love of my little girl that I found solace and relief. Holding her, loving her, having her love me back unconditionally -- it gave me a reason to live when I really didn't want to anymore.

I realize how much I have relied on her over the years. When I went through a horrible depression, she took on extra responsibilities to help around the house, even though she was only 8 years old. She has always been able to reason with her brothers and sisters to restore peace in our home. She treated her brothers and sisters like friends, inviting the younger girls into her room for "sleep overs" and including her younger brother in her own circle of friends. Since I've had CFS, she has helped rally the kids to do their chores when I was too exhausted to nag any longer, and she has run numerous errands for me in her car.

I realized that my reaction to her leaving home hasn't been fear for her, but rather fear for me. Even though I am years into the healing process, it terrifies me to think that IT might rear its ugly head again, and she won't be here. It feels like someone took away my security blanket in the middle of the night while I'm still afraid of the dark.

I'm not that little girl anymore. I'm a grown up, and grown ups don't need their children to take care of them (at least for another 30 years or more, I hope!). It's time to start using my adult coping skills and let my girl go.

As I write, there is a storm brewing outside. A fierce wind is blowing leaves and debris into the roads, and the temperature has dipped 20 degrees. Instead of smelling the smoke from the recent fires, I smell the fragrance from the flowers in my yard that have been disturbed by the upheaval and dust mixed with a trace of moisture. The clouds are dark and enigmatic, moving closer. There's a crackle on the radio that tells me lightning has started nearby, and I hear distant thunder. I love this weather! It sweeps away the heavy 100+ degree F days that have been lingering too long. Everything is fresh and new. It mirrors my soul.

Adrenaline Junkie

I think I thrive on stress. Not the normal background soundtrack to my life kind of stress, but the in the moment kind of stress. Like when I speak in front of a large group of people, or I race to complete a deadline, or I handle a crisis fairly well. It's almost like I feel high for an hour or two after!

And then I crash. Muscle fatigue, extreme exhaustion, brain fog, headaches -- you're all familiar with it.

I think I've been cycling in and out of it for weeks now. I wake up in the morning, and I'm hit with the worries of the day, sending a rush of adrenaline through me that won't let me doze anymore. I scurry around getting the kids off to school, and then when it quiets, I rest. The rest brings on a crash, and I can barely get out of it! Yesterday, I actually had to sit down in the shower (I'm usually higher functioning than that). I called my husband and started crying before he even said hello. Not good.

Then it's time to pick up the kids and shuttle them to various activities, and I'm living on adrenaline again. We get home in the evening, and I have to ask one of my teens to put chicken nuggets in the oven for me. I try to interact and help the kids get their homework done or get ready for the next day, but all I can manage is a little half-hearted nagging. By the time bed comes, I collapse.

It is finally dawning on me that perhaps adrenal fatigue is a part of my CFS! (Duh.) Does anyone have a way of breaking out of the stress cycle? Is there a way to "talk yourself down" from an adrenaline high? I'm interested in opinions and ideas!

Making Connections

Today I've had my own "Aha" moment.

I woke up feeling surprisingly well. I looked in the mirror, and I didn't see a zombie looking back at me. I was feeling restless during my first rest this morning. I felt ... better!

What made all the difference in the world? My oldest son (15 yo) had been on vacation with another family for 3 weeks, and he just got home yesterday.

Being a busy mom of five other kids, I didn't even notice how much I was worrying about him! He didn't have phone service or internet access most of the trip. He was able to text his sister a couple of times, and when he did, he sounded homesick. This was supposed to be a great adventure vacation -- crossing the US, visiting the Mall of America, Mount Rushmore, LDS church history sites, the Grand Tetons, Yellowstone Park, and more. There was mountain biking and hiking and camping and river rafting. It was the chance of a lifetime! He had a great time, but missing us all put a damper on the trip. And the whole time, I worried.

So, he got home yesterday, while I was working at the store. He spent the entire afternoon with his father, getting our truck fixed. They had a fun time entertaining an 81 year old homeless man while they waited for the truck. Then, he took off with his sister and their best friend and did "stuff" for awhile. After work, my husband took me out to dinner, like he always does, and then my son joined us!

He was so cute! He ran through the restaurant, jumped up onto the bench in the booth, and gave me a huge hug! He kept us laughing as he shared all his stories from the last few weeks. It was a wonderful dinner, and I was so happy to have him home. He took off with his friends after dinner, but came into our room before bed and chatted some more until after midnight.

His favorite sarcastic remark before his vacation was "I hate this family!" He has sworn to NEVER say it again, lol!

My next big stress is sending my oldest daughter off to college on Sunday. I hope I'm not a wreck like I was with my son. I don't think I will be. She is ready, I know. She is such a smart girl, and she has a super fun personality. She is absolutely darling, so I'm sure there will be plenty of boys to show her some interest. I know she'll excel in her classes, because she has the skills to do so. I feel like this is going to be such an amazing growing experience for her.

I've spent so many years making room in our family and in my heart for each new baby. I wonder what I'll do now that I'm beginning to send them off? I wonder how our family will deal with shrinking, not expanding. Anyone have any good stress remedies?

To Be, or Not To Be ...

I'm mad. Really, freaking mad. I know it is not uncommon for people with CFS to feel anger. I know it is one of the stages of grief, and we have, indeed suffered such a great loss. But I thought I was passed that. I didn't expect it to sneak up on me again.

My husband and I were planning on taking the kids to see "Up" at our local theater this weekend. Today, he calls and tells me that we need to go tonight, because it looks like it will no longer be playing by this weekend.

I worked yesterday. Also, my 7 year old son came into bed with us in the middle of the night last night because he was feeling sick and couldn't get to sleep. It took three hours of scratching his back, smoothing his forehead, chatting a little, and snuggling before he finally fell asleep. Today is supposed to be the day that I stay home, take it easy and recuperate.

Do I go with my family, or let them go without me?

So, I guess the question isn't really "To be, or not to be" (no need for suicide hotlines at this point, but thanks for the thought!), it is "To be, or not to be ... what?" What do I choose to be?

Are you like me? Do you have this intuition that tells you exactly what you need to do to recover? I've put all the pieces in place -- proper sleep, proper nutrition, supplementation, rest periods. Pacing. I know that the only thing left for me to do is to always keep within my energy boundaries. No more boom-bust. No more push-crash. No more two steps forward, one (or two or three) steps back. I just need to always stay within my energy boundaries.

What do I choose to be? An invalid, or a wife and mother and business owner? Do I really have a choice? I don't think so. I am a wife, a mother, and a business owner. So, becoming healthy again isn't really an option.

And I'm mad.

Houseworkaphobia

I am afraid to clean house.

There is actually a rational explanation behind my irrational fear of housework. During the first year of CFS, when the doctors couldn't tell me what was wrong or what to do to fix it, I did what we typically do -- I pushed myself to try to keep up with my "normal" life. As a result, I was in a constant, 24/7 zombie mode. The fatigue and brain fog were so severe that I couldn't maintain a decent conversation with anyone. I spent hours on the computer, my only respite. My family thought I was addicted. They would come in and interrupt me, trying to interact. They would say something to me, and I'd have to stop, look them in the eye, and still ask them to repeat themselves three or four times before what they were saying made any kind of sense to me. I would still be on the computer when my husband came home from work at 9 pm. I would be desperate to get some sleep, but I was so tired, I couldn't even find the energy to get up and walk upstairs to bed. It was bad. It was ugly. My family suffered.

Then I discovered I had CFS! And pacing! And I started to live within my "energy envelope". Sort of. I'm still working on that. But, anyway, the brain fog began to clear for moments at a time. I could actually talk to my children. And parent them again. It was difficult, because they had become quite feral and did not take kindly to the retaming process. Nonetheless, I found the strength and energy to stick with it, and we are becoming a normal family again. I actually played a board game with my children the other day. It was amazing.

So, my great fear is that if I start doing housework again, I will no longer have energy left for my family! I need to keep an energy reserve for those unexpected moments that require me to parent. I don't want to be unavailable to them again because I was wiping the kitchen counters, or scrubbing the toilets, or sweeping my front porch.

Still. I want to be able to bless my family by creating a more peaceful, inviting home for them ... and me. I'm in the middle of reevaluating how I spend my time. I am coming to realize that too much time on the computer is as harmful as overdoing it physically. I need to start "switching" activities, and maybe I can add a few minutes -- 5 to 10 at a time, maybe -- of housework to my day.

I am going to face my fears and start FlyLady(FlyLady.net) this month. I discovered FlyLady when I was pregnant with my youngest son. Her program helped me dig out of disarray after months of morning sickness that left me unable to do anything. I realize things are different this time, so I'll have to modify it and keep it within my abilities. But I think I can do this.

AND keep my cleaning lady. ;)

Everything Has Its Price

My niece was married on Friday. I loaded all my kids into the van, and we made the 1 1/2 hour ride down to my mom's house for the reception. I thought it would help if I let my oldest daughter drive... it didn't! I visited with my sister whom I haven't seen in two and a half years. We laughed and had a wonderful time. After the reception, it was early enough that we could all go swimming. We ended up hours in the jacuzzi, and I just couldn't bear to tear myself away from the fun. Finally, it was late. My daughter was staying the night, so I ended up driving home myself, in the dark.

I thought I was taking it easy on Saturday -- just a little trip out to the grocery store for much needed food. The evening came, and I had to make a decision: do I go to see fireworks with my husband and kids, or do I get an early night and make it to church the next day? I chose to stay home.

Yesterday, I woke up, and there was just no way I could make it to church. I was aching all over, I was weak, I was emotional. Everything cried, "No way!" My husband took one look at me and suggested I stay home. "But I stayed home from fireworks so I could go!" I said. He told me, "Honey, it doesn't really work that way."

Oh, my wise man. I've learned that everything has its price when you have chronic fatigue. I thought I had the "system" down. I thought I could have my own "cap and trade" program and get away with it. I discovered two great flaws with that. First, I don't know the true cost of an activity until the aftermath actually hits me. Second, I follow my heart and jump into activities that end up really, really expensive.

Is it possible to really listen to your body? I'm still riding the roller coaster, and that can't help my recovery. I'm doing a lot of great things that I think can really make a difference to my health. But I'm always guessing at my limitations, and I am not getting it right. I sabotage myself, I think.

I know why. I hate the thought of life passing by without being able to live it. I know some things only happen once, and then they are gone. I don't want to regret this giant part of my life, especially if it drags on and on and on. I want to steal a slice of normalcy, even though this disease has decided it isn't supposed to be mine.

Whammy!

Wow! I haven't had one of those days in quite awhile!

Yesterday was my day to mind the store. I always hope for a quiet day at work, but alas, it was not meant to be. I had several customers throughout the day. One customer in particular was pretty demanding, not only physically but mentally as well. He was a nice fellow, and it turned into my biggest sale of the day, but it also took a lot out of me. He kept me on toes ... and my feet! ... for the better part of an hour.

After work, I went to my daughter's awards ceremony. My oldest is graduating from high school with honors, and she was receiving a scholarship award as well. I'm very proud of her -- what a good example to set for the rest of my brood! I wouldn't have missed it for the world. However, I was a bit late arriving since I was coming straight from work, and so I had to park in the farthest parking lot. There was a steep hill I had to climb to get to the venue. I have not had a workout like that since my pre-CFS days!

I had no idea that the awards ceremony would last -- are your ready for it? -- two hours! We were huddled on benches as the temperature dropped and the wind picked up. My muscles were tensed trying to generate warmth. My back was aching, and it was nearly unbearable!

By the time we got home, it was after everyone's bedtime (mine included). As I was getting ready for bed, I noticed my pedometer -- over 5300 steps! To put that in perspective, before CFS I was averaging 5000-6000 steps a day, with a busy day pushing 8000. Since CFS, 3000 steps is a busy day. Today, I have 489 steps so far. :) I fell asleep almost immediately, and I slept like a rock until 9 am this morning.

Here's the amazing thing: I thought I would be headed for a crash for sure! And yet, I am feeling surprisingly good. My energy is steady, I'm not sleepy, and I haven't felt like I need to be horizontal. I'm not feeling any post-exertional malaise. Granted, I am having a super slow day (hence the 489 steps), but still ... I must be doing something right if I've tolerated that kind of day so well.

Hmmmm ... hopeful?

Sweetness

I have been trying to adjust my diet lately, and I've come upon an interesting question: Which sweetener is better for you? I've heard that aspartame is not good for people with CFS, but I seem to tolerate it better than actual sugar. I love to have a SlimFast shake in the morning, because I hate breakfast and it's the only thing I can stand. Also, I want to start drinking sports drinks for electrolyte support, but high fructose corn syrup is definitely not good. Is sucralose any better? And I really like the Crystal Lite packets you put into your own water bottle, but again ... aspartame. Does anyone have any experience or advice with this?

As an aside, I have actually had a good week! You couldn't tell it from my lack of posts. Of course, the end of the school year is ridiculously busy. But I've felt a few days of really good energy! I don't know why, because I'm back to feeling blah today.

Plus, I got the first issue of my Fatigue Busters newsletter out -- talk about stress! Why do I worry that people I don't know and will never meet won't like my newsletter and website? Am I really that identified with it? Yes, I think I am. Maybe that means I identify myself too much with CFS. Hmm, something to think about. I also updated two major pages on my website -- pacing and diet. Much better information now, I think. I also added a bit to the natural treatments section of the website. Good work, eh?

This is the last week of school. :) I love having the kids home with me. Plus, I have the added bonus of not having a fixed schedule to stick to. I can actually allow my body to wake when it wants to instead of being jolted out of sleep by the alarm. That's got to help, right?