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.

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.

I Fight

There's a moment, when my husband comes to bed after I've already been drifting in and out of sleep for a couple of hours. His movements in the room cause me to stir, to surface back to consciousness. I don't know what he sees, but sometimes he reaches over and caresses my forehead, like a parent would a sick child. It is the only moment when I am truly aware of my suffering, and I turn my face to him, begging him not to stop. Sometimes he continues softly rubbing my forehead, comforting me until I fall back to sleep. Sometimes he pulls me to him, and I am wrapped in his warm, safe cocoon.

When my relapse became so bad that I had to cut out all my remaining external activities, a friend of mine was worried. She said it sounded like I was giving up. What she doesn't realize is that I fight this disease every waking hour.

I fight this disease when the alarm goes off and I stumble out of bed to wake my children. When I referee an argument. When my daughter wants to talk. When my son needs help with homework. When I have to defend an unpopular decision.

I fight this disease when I take my pills and drink my protein drink. When I stretch away the pain. When I rest half an hour longer. When I choose soup for lunch. When I add vegetables to my pasta dish. When I go up to bed while my husband and children are still laughing at the programs on TV.

I fight this disease when I take my lunch outside to enjoy the sunshine. When I see the snow on the mountains. When I notice the first day lily bloom. When I hear the birds through my window, their songs, their dialogues, and the one nobody answers.

I fight this disease with every smile I smile. Every pleasant conversation. Every phone call. Every note I write. Every tear I give in to.

I fight.

Until the moment when I feel my husband's hand upon my brow. Shhh. I'm here. You don't have to fight anymore.

The Antidote

Hope: v. to wish for something with expectation of its fulfillment; to look forward to with confidence and expectation; to expect and desire; n. a wish or desire accompanied by confident expectation of its fulfillment; something that is hoped for or desired; one that is a source of or reason to hope.

Hope is a dangerous thing. It builds expectations. It shines the light on the past as a titillating promise of the future. It paints tomorrow in such lovely colors. And invariably, if you give it too much attention, it disappoints.

I haven't given up hope. On the contrary, I honestly believe that I will see miracles, that researchers will find a cure, that I will someday be free from CFS. But, I think it is safest for me to keep hope tucked away in my back pocket -- always there, but never consciously acknowledged or relied upon.

Love is the true antidote to despair. A note that says "I miss you." A gift left at the door. An unexpected visitor who can only stay a minute. Words of encouragement, reminding me I'm not alone. Little acts of kindness. Hugs and kisses and that spot right under my husband's arm where I fit perfectly as we watch TV on the couch. These are the things that calm my troubled heart, bring peace to my soul, and remind me that this life ... this life ... is worth living.

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.

Deer in the Headlights

I saw it coming. I really did. But there was nothing I could do about it.

Last week was about as bad as a week can get! Busy and stressful -- not a good combination. The a/c went out, and it took the repairman four days and two visits to fix it. We had pest control spray our house inside and out, forcing us to leave home for a couple of hours. My teenage son stepped on a stick on Father's Day, and it has been infected ever since. We had a couple of lengthy doctor's visits, as well as a couple of trips to get x-rays. It is not healing well, and my doctor informed me that he may require surgery. We don't have insurance right now, since we started our own business, and the cost would be about $10,000. Yikes! My daughter was in her first accident the other day (not her fault!) which meant I've been helping her with insurance adjusters and auto mechanics. My husband thought it would help me if we could get away, so we got a hotel on Friday. The bed was atrocious, and I did not get hardly any sleep! He took me to see Harry Potter the next day, but a 2 1/2 hour movie is not something I tolerate very well these days. (I loved the movie, though! I've read all the books.) After, we walked the mall for a little while, looking for a blender. We had an early dinner that was nice, but I ended up skipping my afternoon rest. Sunday, I not only taught the lesson for our women's group, but I also gave a talk in the main meeting when the families are all together. Sometimes I can piggy back an extra activity on top of an already busy day, if I rest enough before and after. I had accepted the assignment well before I could have known what kind of week it would be!

And ... yesterday, I had a terrible crash! Of course, I knew it was coming. I'm surprised it didn't hit me earlier. I came home from church and headed straight to my room. My husband fixed me a delicious salad and sent it up to me. My youngest was so sweet, making sure I had enough to eat, filling my water bottle, offering to share his dessert. I was woozy and passing out; I developed a migraine that prescription strength ibuprofen didn't help; my muscles AND joints were aching all over. I slept, but just a little bit. My eyes were twitching so bad, I felt almost blind! I finally fell asleep for good at 11:30 pm, and I was out cold until 9 am.

And yet, today, I am rebounding pretty well! I am taking it super easy today, of course, but I'm out of bed. I was able to change my sheets (long needed!) and do a load of laundry. I can't believe I'm not worse off today.

Something is seriously getting better. I feel like the tortoise and the hare ... and the snail. I'm at the beginning of the race, but I really think there is a finish line somewhere down this road. Yesterday was awful, but I am feeling so full of hope right now.

By the way, I did a great job with both my talk and my lesson! ;) That may have been a little help from above!

Surrounded by Wonderful

Today I am celebrating my support system! I've been reading a lot lately about the horrible stigma that comes with CFS, and I am so happy that I have wonderful people in my life who not only believe me but will do anything they can to help me recover.

First of all, let me say that one of my largest conundrums has been whether or not I should be going to church. Our church starts at 9 am. There are three meetings that are about an hour each: first, a meeting with the family to take the sacrament, then Sunday School, and then a meeting with the women. I teach once a month the third hour, when just the women meet together. I love church! I love the things that are taught -- I feel fed when I come home. I love teaching, especially when a really good discussion gets going. I feel enriched. I love my friends who are there. But (or should I say BUT), it wipes me OUT! It throws my schedule off completely. I usually come home and nap for two to three hours, which means I don't get to sleep until late that night. I have to pace well on Saturday to conserve energy, and then I have to take it easy Monday and Tuesday to recuperate. I feel like it is physically sabotaging my recovery.

So, my first celebration is my wonderful husband who came up with a plan. After watching me struggle with myself for a few months, he suggested I try to come only for the third hour. I can still take the sacrament first, and then slip in to the women's meeting. I won't have to kill myself trying to get up and ready by 9 am, and just one hour should definitely be manageable. I'll still stay home on those days when I'm not up to going, but this should keep me from feeling alienated and cheated out of something I really enjoy.

Second, I am celebrating those wonderful friends from church! I was absolutely miserable on Sunday. It was one of those days where I shouldn't have gone, but I wanted to be there, so I forced myself to go, and then realized I should have been more judicious. After the meetings, a couple of my friends asked me what they could do to help. You've been there, right? What do you say? I told them there wasn't really anything to do, of course. But they didn't stop there. They pressed me, saying there had to be something that would help. I joked that they could discover a magic pill that would make my kids keep up with their jobs. That led to more probing and I eventually admitted my deep, dark secret: the house is a mess. Not just the clutter that builds up when you have kids that aren't keeping up with their jobs, but two years of filth that accumulates when you can't do the big jobs like mopping the floor and washing windows and cleaning the oven and scrubbing the tub. And, just like that, they said they were coming over to clean my house.

Have you ever done that? Have you ever let someone help you ... I mean, really help you? I am scared and in awe.

The Results Are In

ATTENTION SHELLI -- Read this post the next time the time changes!!!

Throwing off my schedule is WAY better than getting myself into a sleep deficit!!!

Yesterday was awful! I felt miserable all day long. I certainly tired myself out by bedtime, but it didn't help me fall asleep any better. I definitely slept hard all night; I remember waking a few times, but I went right back to sleep afterward. I didn't wake up until 9:30 am today -- that was a full 12 hours (mildly interrupted) of sleep! And, I can still feel the deficit. I'm going to need to take it easy for awhile longer, probably through the weekend.

How I wish some of you could have been a fly on my wall at 6:30 am yesterday morning to buzz in my ear, "Don't do it, Shelli! No, don't!"

On the happy side: I had such a nice day with my kids yesterday! My 8 year old son was showing me how to be an Avatar -- he is so creative, I just laughed at his antics. My 17 year old daughter found a way to get me talking about when I was a teen. My 15 year old son came in my room right before bed (my bedtime is earlier than his, how funny is that?). He was in a hilarious mood, and I really enjoyed him.

AND -- I'm on my way to the spa in a couple of minutes! Full massage, salt scrub and body wrap. Once again, thank you to the world's best husband ever!!!

Post SEX-Ertional Malaise?

(Hmmm ... couldn't find an appropriate picture. For the best?)

My husband and I were considering this question. Could ... intimacy cause post-exertional malaise? I mean, it is certainly the most aerobic of any of my current activities. Could it be sabotaging all my careful efforts to pace and monitor my activity levels?

Of course, the benefits are substantial: it relieves stress; it boosts immunity; it burns calories; it improves cardiovascular health; it boosts self-esteem; it reduces pain; and it HELPS YOU SLEEP BETTER! (from WebMD)

Maybe it's like dark chocolate when you're on a diet -- it's so good for you, the calories just don't count.

Perhaps I should just keep an awareness in the back of my head and try to adjust my other activities to compensate. I really don't think I'm going to formally "pace" this one; too much scheduling takes the spontaneity and fun out of it.

Like I told my husband the other night, this is one thing I am not willing to sacrifice to CFS. The response from my so very supportive husband? "Me, neither."

Hallelujah, It's a New Year!

Yes, I survived the holidays! We finished a most trying and difficult 2008 in the best way possible -- my husband took me to San Diego's Gaslamp District for a three day get away to celebrate our 20th wedding anniversary. For three glorious days, we enjoyed aimless wanderings and laziness and uninterrupted idleness. We did a little walking, a little shopping, a little sight seeing, and a little dining. We lounged in our room for hours, reading and watching football games and Project Runway marathons and past Dog Whisperer episodes (there were two TVs in the room!). I took steamy hot baths each night. We went to bed at a reasonable hour and woke up whenever we wanted. I was spoiled beyond reason and it was heavenly!

We came back to town just in time for a big New Year's party with friends and all their crazy little ones. We talked and ate and played Rockband and American Idol on the Wii. We set the clocks ahead two hours when the kids weren't looking and yelled "Happy New Year" at 10 pm with little ones none the wiser. The neighbors thought we were nuts! We got home, put kids to bed, got to bed at a normal hour, and snuggled in to bring in the New Year ourselves.

There is something so wonderful about a New Year! It is fresh and full of possibilities. You come into it with all the lessons of the last year in your back pocket. You forgive yourself and let go of past failings while resolving this year will be so much better!

This is the time for me to make changes. OK, I have CFS, now it's time to learn how to live with CFS. I think it's time to stop waiting for it to just go away. It's time to put into practice the things that will make me feel better, help me get more out of my life, and make me as healthy as possible.

Thank you to all of you who have listened and given me a boost when I've needed it! It feels so good to know you're not alone, that there are others out there going through wha you are. It is nice to not have to learn all the lessons yourself. I wish you all a fantastic 2009!

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.