“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Saturday, July 31, 2010

Daunting Things

1.  Super Wal-Mart, even in one of those complimentary motorized scooters
2.  School registration
3.  Back to school shopping
4.  A visit from my sister
5.  Car pooling
6.  Eight year old boys at my house for a sleep over
7.  Tidying up
8.  Making taco salad

Tuesday, July 20, 2010

The Exercise Question Revisited

I have to admit -- during my relapse, the amount of exercise I engaged in shrunk to nearly nil.  Just a sporadic bit of yoga, that's all.  And, I think I paid the price.

When I reached the peak of pain and deconditioning, I knew it was time to revisit the question of exercise.

Here's my theory:  Managing pain consumes a lot of energy.  If exercise helps eliminate a lot of my pain, then I would then have that energy at my disposal for fun stuff, like showering or making my bed.  Also, it takes a lot more energy for my deconditioned body to do activities than a body in good condition would.  If I improve my strength and endurance, again I will be making my body more energy efficient.  It seems to me that exercise is an important part of my recovery.

Yet exercise is risky and fills my heart with fear and trepidation.  I know what happens when I do too much too fast.  I would have to proceed with caution.

I decided that exercise needed to find a permanent place in my daily routines.  Recognizing that it has a high energy requirement, I would simply have to scale way back on all my other activities in order to fit it into my energy envelope.

So, I added morning stretches/isometric exercises, modified from the book I have, Pain Free.  I also do yoga before my morning rest.  And, I bought some of those negative heel exercise shoes that I wear all day.

I did feel a push back from it when I started, but it didn't cause an outright crash.  I just had to scale way back on my other activities.  I've adjusted now.  And I've tolerated a slight increase in my morning stretches.  My pain has diminished.  I don't feel like I've made a lot of progress in conditioning, but hello!  Patience, child.

I think I'm on the right track.

Monday, July 12, 2010


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.

Monday, July 5, 2010

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.

Friday, July 2, 2010

Making New Friends

A big Hello to the Happy Panda who has recently started a blog.  Welcome to our fabulous CFS community.  I hope you enjoy the caring and wonderful people you meet here.  Here's a link to her blog, and I've added her to my sidebar for future finding.

The Happy Panda