Christmas Crash

Everyone who is Christmas crashing, raise your hand!

I know it's not just me.  I have a sneaking suspicion that pretty much all of us overdid it for the holidays.

Christmas is a time of reflection for me, a time for taking stock.  What I learned this year is that, although CFS is not supposed to be a progressive disease, it has certainly been progressive for me.  Each year, I have gotten worse and worse, and I've been able to do less and less.  All I accomplished this year was shopping, and most of that was done online.  Even so, by Christmas morning, I felt like I had just run a marathon and could barely crawl across the finish line.  I ended up taking an hour and a half rest in the morning and another hour rest in the afternoon, and I still felt miserable well into the evening.  I was grateful my family went to my in-laws without me, even while I was sad to miss out on the fun.

I suppose the good news is that I felt much better yesterday, so I didn't stay horribly crashed too long.  I'm happy to get back to my regular routine, you know, the one where I'm actually taking care of myself.  I love Christmas, but this isn't the Christmas I remember.  Once again, I find myself packing it away and saying to myself, "Next year has to be better."

I hope you all had a wonderful Christmas, and that it was a time well worth it!  And here's to a healthier New Year for us all.

The Tipping Point

When I first heard the news that I was XMRV positive, a tremendous feeling of peace and calm came over me.  The uncertainty vanished.  I know, I know, the science is still out... and yet, I can't help but think that I have found my answer.

My next steps are clear.  I had decided on them before I sent my blood in for testing.  I have an appointment on January 5th with an Infectious Diseases specialist.  I am going to request to begin treatment with the AIDS drugs that have proven effective against XMRV.

I know the AIDS drugs have some serious side effects.  I also know that people with CFS have had a really hard time getting on the drugs.  It will be a challenge.  And yet, I am not wavering.

I've passed the tipping point for me.  My quality of life is so negligible that I am willing to try just about anything that offers hope for recovery.  I am housebound.  I miss out on important events with my family all the time; just yesterday, I was unable to go watch my son tie for 6th place in the school spelling bee.  Side effects are not going to interrupt my life, because there just isn't that much to interrupt.

So, what about you?  Where is your tipping point?  Are you there yet?  Would you take the drugs, side effects be damned, if you KNEW you would recover completely?  Would you let your kids do it?  Or would you wait for science to catch up and offer new, safer treatments?

Name Change

Anyone notice the new name for my blog?

Christmas and ME

Never is my disability more evident than at Christmas time.  I am the Christmas planner in my family, the decorator, the shopper, the baker, the card sender, the tradition enforcer.  I have been in the heart of the maelstrom, delegating and giving direction to all the parts of Christmas that I love which all lead into a satisfying, Spirit-filled Christmas day.

Not surprisingly, each Christmas since I came down with CFS has been increasingly different, increasingly simple.  Now don't get me wrong, simple is a good thing.  It scales back all the unnecessary and frantic materialism of Christmas and brings you to the heart of the season.

Yet this year, I kind of feel like it has stripped me of Christmas altogether.  I've done my shopping online, and I've almost finished, thank goodness.  However, there are no decorations yet.  No cards sent.  No stories read.  No cookies baked.  Just a huge to-do list of things that I need to do in an increasingly short period of time.

I feel like I haven't had time to even glance at the sky, let alone find the star and follow it.

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.

Double Whammy

Close on the heels of my root canal, I came down with the flu.  It has wiped me out completely.  You know, prior to this, I never really connected that CFS "feels like" a bad case of the flu.  But this time, I noticed how the flu has amplified my CFS symptoms -- CFS on steroids! -- and I can now see the similarities.

I've been a lump on a log.  No writing.  No blogging.  No tweeting.  Barely any Facebook.  I'm hoping this week is a little more productive for me, but I still plan on taking it easy.

Getting the flu has also made me curious about the immune deficiencies of CFS.  I've heard about it but never really understood how it works.  I have noticed that although my throat and sinuses hurt, my body doesn't seem to be trying to get rid of the germs -- no mucous.  I've been doing a daily nasal rinse to compensate, and I think it's been helpful.  Hm.  I guess, after four years, there's still more for me to learn and understand about this disease.

Hope you all are doing well -- as good as can be expected, at least!  Enjoy your week of Thanksgiving.

A Different Kind of Ouch

Words that strike fear in the heart of any PWC (person with CFS):  I have a tooth ache.

It started Monday night, innocuous enough, but by Tuesday morning, it was raging.  I called my dentist, and they were able to squeeze me in yesterday at 3:30 pm.  Right in the middle of my scheduled rest.  :(

I was told I needed a root canal.  Hm, that's interesting, because the dentist I went to about five years ago was supposed to have done a root canal on that tooth.  Rip-off artist.  I guess that's what you get when you are in a new community and don't know how to get referrals to the good guys.

The procedure took about an hour and a half.  Luckily, I was able to ask for and receive nitrous oxide.  Ah, good ol' nitrous oxide.  At least it minimized some of the stress of the situation.  Hopefully, it will minimize my crash as well.

Because crashing I am!  I took pain medication last night before bed, but I woke at 2:15 am in agony.  Took more pills, but I awoke again at 5:15 am and had to wait another hour before I could safely take more pills.  I was grateful for the pain management techniques I had learned during my childbirth years.  I took another pill at 6:30 am.  Now I have to wait another hour before I can take another pill.  :(

Luckily, my kids are out of school for the long weekend, and I have no responsibilities I need to muddle through.  Just rest and recuperate.  I hope the crash is minimal and short-lived.  A root canal for a healthy person is traumatic enough; for PWCs, it's brutal.

Exciting News for Me

Many of you know that I started a website, Chronic Fatigue Community, about two years ago.  I spent a lot of time developing it, adding pages and articles about various topics related to CFS.  I was especially proud of the blog roll I had which included many of your blogs.  That list was the most visited page on my website, and it had the most repeat visits as well.

Well, my health deteriorated, and I was unable to keep adding to the site.  And although the site was a labor of love, and not expected to generate much income, I found that the annual $299 maintenance fee was too much for me.  So I made the decision to not renew it this year.

I just received an e-mail from the parent company, Site Sell.  They've made me a tremendous offer.  They want to reactivate the site and take over management of it.  They will monetize it and maybe add a few more articles to it and make it profitable.  They will split the proceeds with me 80/20 (I'd get 20% for doing nothing).  I have the option of renewing the website again at any time and taking it back over, keeping the benefits that they've added to the website.

They made the offer based on the website's content and potential.  They said they make an offer like this to only about 15% of the websites that choose not to renew.  I'm so excited that all that hard work won't go for naught, and that the information I've collected and shared will still be available to the public.  I'm also excited that the referrals to your blogs will still be accessible for people who are looking for support through the blog community.  If it ends up being profitable, well, it would be exciting to be able to add to the family's income for a change.

The site is www.chronic-fatigue-community.com .  It will still be down for awhile until they get it up and running again.

Backlogged

So, I called VIP Dx to see how things were going with the testing.  For some reason, I was a little panicked since I hadn't heard anything from them.  I thought maybe they hadn't received my samples, or they got there too late, or they had been rejected for some reason.  I didn't want to drag the wait out longer than needed.

None of the above had occurred.  Instead, they're backlogged, and instead of four to five weeks, it will take six to eight weeks to find out the results.  Hey, I've waited over four years, what's another week or four, right?  At least I know that something is happening.

It made me think of all the activities that are backlogged in my life.  All the have to's and ought to's that are piling up because I just don't have the energy to get to them in a timely manner.  And then, all the way at the back of the line, so far back I can't see most of them, are my want to's.  Backlogged into oblivion. 

Maybe I should throw caution to the wind and escort one of those end-of-the-liners right up to the front of the line.  If I could only remember what they were.

Better Than Expected

Tuesday was a Very Big Day.  I thought I had it all planned out.  Parent/teacher conferences for four of my kids.  I went to the boys' conferences first.  They were back to back, one at 1 pm, the other twenty minutes later.  Less than an hour total, not bad.  A little more walking around than I'm used to -- it's a pretty big campus for an elementary school, and parking was atrocious.  Still, I felt pretty proud of myself for weathering it well.  I took a long, deeply relaxed rest.  Geared up for the evening conferences.

I thought I would be able to finish in an hour.  I was so sorely mistaken.  Lines were backed up to see each teacher, and it dragged on for two hours.  I came home exhausted, wiped out, fearful, and angry.  I hate what CFS does to me sometimes.  I was just trying to be a good mom.  I wouldn't have put myself through that if there weren't important issues to discuss.

I went to bed, tossed and turned for about an hour, and finally drifted off to sleep.

I felt the effects immediately the next day.  Good news?  I didn't dare hope.  I defiantly recuperated.  I didn't stretch or yoga or make my bed or do laundry.  I read books, played on the computer, and watched TV.  I rested a little more than usual.  My afternoon rest was deep, to the bones.

The next day, I could still feel the effects, but not quite as bad.  Hm.  Still, I forced myself to do nothing.  Except I think I made my bed.  Yesterday, I could tell I was doing better.  I made my bed and added a load of laundry.  And today?  I've already made my bed, started a load of laundry, and I'm contemplating folding the two baskets of clothes that have been neglected for a week.  Plus, I had enough energy to boss the kids around and have them tidy the house.  My front room is ready for a little decorating.  I think I need to find the animated haunted house I've kept in storage.

I so worried that this would be a big event, one that would kick my sorry butt back to square one.  Instead, it seems like I'm having a very normal post-exertional malaise reaction.  Bouncing back to baseline already.  Whew.  I'll let go of some of that anger now. 

Still waiting on test results.  VIP Dx says it takes five weeks to get results back.  Five freaking weeks.  I guess if I've waited four years, I can wait another five weeks, eh?

The Waiting Game

I was finally able to get my labs done yesterday.  I cut my morning rest short, and I arrived at the lab at 11:40 am.  They close at 12 pm for lunch.  My timing couldn't have been better.  Twenty minutes layer, I was staring at a tray full of vials filled with my blood.  An awful lot of them.

I called my husband, feeling triumphant that I had completed that task.  When I greeted him, he said, "What's wrong?  You sound terrible."  Yep, he's that good.  I guess I didn't sound as triumphant as I felt.  He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait.  I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything.  Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered?  We'll see.  Once I know, I can decide on a course of treatment.  See if I should wait for more science or go for HAART treatment. 

Have I ever mentioned how impatient I am?  Let the torture begin.

Baseline, Part II

A note about my list of activities.  Everything on the list is subject to my energy envelope.  I find that I fill most of my days with low to moderate energy activities.  But even on my best energy day, I can only tolerate up to eight moderate energy activities.  If I add any of the higher energy activities, that number plunges dramatically. 

Sometimes, I'll piggy-back high energy activities.  I tolerate two high energy activities in one day better than I tolerate two high energy activities in separate days, especially if it's the next day.  It's like serving my sentences concurrently rather than consecutively.

I have pain in my hips and neck always.  Sometimes I have pain in my back.  I get mild headaches a coupleof times a week.  I get a substantial headache about once a month.  My current level of pain is a steady three.  On my worst days, it bumps up to a five.  On a good day, for example right after my massage, it drops to a two.

I'm not quite sure how to quantify brain fog.  My memory is completely unreliable, even if I have it written down on the calendar.  I blurt out the wrong word several times during the course of the day.  I have a hard time finding words, and sometimes my mind just goes completely blank, like a white board wiped clean.  It takes me several uncomfortable seconds (10 or more) to retrieve my thought processes.  Sometimes, if someone reminds me what I was talking about, I can pick up where I left off.  Sometimes it's just gone, and I move on.

Did I leave anything out?

Baseline

Things that are very low energy, that I tolerate extremely well with no need for any kind of rest after.
reading
watching TV
crocheting
playing on the computer
resting (duh)

Things that are moderate energy, that I tolerate well.  I may need a small rest immediately after.
showering
yoga
stretches
wearing my negative heel exercise shoes for daily activities
doing laundry
up to five minutes tidying my home
picking up my daughter after school (30 minute round trip total)
putting dinner into the crockpot
visit in my home (up to 30 minutes)
visit on the telephone (up to 20 minutes)
parenting
writing
reading on the computer
blogging

Things that are high energy, that I tolerate fairly well.  I definitely need a rest immediately after and a recuperation day the following day.
sex
massage
visit outside my home (up to 45 minutes)

Things that are high energy, that I barely tolerate.  I need a rest immediately after and several recuperation days.
doctor's visit
pedicure
going out to dinner
watching my son play water polo (up to one hour, home games only)
any event (up to 30 minutes) such as meetings with teachers or a baby shower

Anything not on the list is too energy intensive with too little benefit for me to include in my life.

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?

Deflated

So, I went to the doctor today.  The last time I had seen her was two and a half years ago.  At that time, we were wading through all the tests to eliminate all other possibilities.  I wouldn't exactly say that we're back to square one, but it's probably no more than square three.

So, I need to get some labs done.  Look to see if I have lupus, Lyme, mono AGAIN.  She wouldn't prescribe Klonopin for me just yet.  She also didn't seem to be jumping up and down about the LDN.  I asked if she'd heard about the XMRV studies, and she said they were "inconclusive."  I told her there were people out here that have tested positive for XMRV and started taking HAART therapy and have been getting better.  She does support me getting tested for XMRV (I mean, what is she going to say, I'm paying for it), and she says she'll keep an open mind if I come back positive.  She would want me to consult with an ID first, just to cover her back if she does go out on a limb and prescribe the HAART meds for me.

What slight glimmer of hope did she offer me in the interim?  She gave me samples of Cymbalta.  She said many of her patients have shown significant improvement on it.  I told her that the pain is minimal for me, that the fatigue is a much greater concern.  Still, she thinks I should give it a try.  I didn't remember in the office that Cymbalta is an anti-depressive; for some reason, I was thinking it was a sleep aid.  Probably because the commercials are so similar.  I did not tolerate antidepressants well in the past; they increased my insomnia, made me feel really wired.  And I am NOT giving up my sex life.  It's the only part of LIFE that I really have left, and I'm not going to jeopardize it.  If there are any sexual side effects, we're done.

As you can see, I'm not thrilled with how things went today.  Add to it that my appointment took two and a half hours, and by the time I got in to see the doctor, I was a trembling, emotional mess.  Totally screwed up today, and I know I'll be reaping the payback tomorrow.

Still... the most important thing that happened today is that we are moving forward with the XMRV testing.  Klonopin and LDN are for interim relief, in my opinion.  I believe the HAART treatment is what will really be helpful in returning my life back to me. 

Faith and Hope

Sunday is a time of reflecting and renewal for me.  I loved this message, and I thought I would share it to all who embrace their challenges with faith.

First Stop

This is what I'm going to do when I get better:

http://dyingforchocolate.blogspot.com/2010/08/chocolate-salon-news-taste-tv.html

Plan of Attack

We have not had insurance since my husband left his job and started our own business three years ago.  I was not overly concerned, because frankly, I was getting nowhere with the doctors, and I didn't feel like they had anything more they could offer me.  I figured pacing and supplementation were as good as anything medically offered.

The discovery of XMRV changed things for me.  So, last week, I purchased health insurance for myself.  As soon as I get my ID card, I'm going to meet with my doctor again.  I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS.  Then, I plan on getting tested for XMRV.  If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.

I don't mind being a guinea pig.  I don't want to wait for clinical trials.  My life has been scraping the bottom for about a year now.  This summer, I barely left the house.  I can no longer go shopping, and driving any distance is difficult.  I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living.  I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.

Of course, I'll let you all know what happens as it happens!  In the meantime:  Has anyone tried Klonopin and/or LDN for CFS?  What have been your experiences?

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.

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

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.

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.

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

49 Things I've Accomplished

Looks like I'm halfway there!

1. Started your own blog

2. Slept under the stars

3. Played in a band

4. Visited Hawaii

5. Watched a meteor shower

6. Given more than you can afford to charity

7. Been to Disneyland

8. Climbed a mountain

9. Held a praying mantis

10. Sang a solo 

11. Bungee jumped

12. Visited Paris

13. Watched a lightning storm

14. Taught yourself an art from scratch

15. Adopted a child

16. Had food poisoning

17. Walked to the top of the Statue of Liberty (not enough patience to wait in that line!)

18. Grown your own vegetables

19. Seen the Mona Lisa in France

20. Slept on an overnight train

21. Had a pillow fight

22. Hitch hiked

23. Taken a sick day when you’re not ill

24. Built a snow fort

25. Held a lamb

26. Gone skinny dipping

27. Run a marathon

28. Ridden in a gondola in Venice

29. Seen a total eclipse

30. Watched a sunrise or sunset

31. Hit a home run

32. Been on a cruise

33. Seen Niagara Falls in person

34. Visited the birthplace of your ancestors

35. Seen an Amish community

36. Taught yourself a new language

37. Had enough money to be truly satisfied

38. Seen the Leaning Tower of Pisa in person

39. Gone Rock climbing

40. Seen Michelangelo’s David

41. Sung karaoke

42. Seen Old Faithful geyser erupt

43. Bought a stranger a meal at a restaurant

44. Visited Africa

45. Walked on a beach by moonlight

46. Been transported in an ambulance

47. Had your portrait painted

48. Gone deep-sea fishing

49. Seen the Sistine Chapel in person

50. Been to the top of the Eiffel Tower in Paris

51. Gone scuba diving or snorkeling

52. Kissed in the rain

53. Played in the mud

54. Gone to a drive-in theater

55. Been in a movie

56. Visited the Great Wall of China

57. Started a business

58. Taken a martial arts class

59. Visited Russia

60. Served at a soup kitchen

61. Sold Girl Scout Cookies

62. Gone Whale Watching

63. Got flowers for no reason

64. Donated blood, platelets or plasma

65. Gone sky diving

66. Visited a Nazi Concentration Camp

67. Bounced a check 

68. Flown in a helicopter

69. Saved a favorite childhood toy

70. Visited the Lincoln Memorial

71. Eaten Caviar

72. Pieced a quilt

73. Stood in Times Square

74. Toured the Everglades

75. Been fired from a job

76. Seen the Changing of the Guards in London

77. Broken a bone

78. Been a passenger on a motorcycle

79. Seen the Grand Canyon in person

80. Publish a book

81. Visited the Vatican

82. Bought a brand new car

83. Walked in Jerusalem

84. Had your picture in the newspaper

85. Kissed a stranger at midnight on NYE

86. Visited the White House

87. Killed and prepared an animal for eating

88. Had chickenpox

89. Saved someone’s life

90. Sat on a jury

91. Met someone famous

92. Joined a book club

93. Gotten a tatoo

94. Had a baby

95. Seen the Alamo in person

96. Swam in the Great Salt Lake

97. Been involved in a law suit

98. Owned a cell phone

99. Been stung by a bee

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!

Lessons from Nemo

I love the movie "Finding Nemo."  I think it is one of those rare films that is not only darling and entertaining, but contains tons of hidden nuggets of wisdom.  While watching it the other day, one particular scene struck a chord with me.

After facing such obstacles as sharks, sea monsters, and jelly fish, Marlin and Dorie find themselves very near the end of their journey.  All they have to do is find Sydney, Australia.  Dorie gets the idea to ask for directions, and they end up being swallowed by a whale.

Inside the mouth of the whale, Marlin flings himself repeatedly against the unmoving baleen barrier between him and freedom.  Of course, it is essentially hitting his head against the wall, and he makes absolutely no progress.  Meanwhile, Dorie is riding the swells of water that carry her to and fro with unabashed glee.

Neither of them knows, at that moment, what the intentions of the whale are.  Neither knows what the outcome will be.  They could be safe, or they could be in grave danger.  They just can't know what will happen next until it happens.

Ultimately, the whale turns out to be a friend, and the ride in the whale's mouth is a shortcut to where they were trying to get all along.

I think everyone in life, at some point, finds himself swallowed by a whale.  You are going along just find, living your life in the direction of your choosing, when something unexpected happens.  You are thwarted.  Your life takes an unwanted detour.  Health issues, a lost job, relationship problems, a wayward child -- hey, I didn't ask for this!

I would never want to give up Marlin's determination.  But there is a lot to be said for Dorie's  abandonment, rolling with it, going with the flow, finding joy in a seemingly joyless situation.  I think you have to have a talent of forgetting, like she did.  You have to let go of the pain long enough to be happy.

I think that may be why people with faith find it easier to shoulder such burdens.  We know the whale; we know He is benevolent and good and only wants what's best for us.  I believe that at the end of the journey, we can look back and see that it was a shortcut, after all.  Maybe not a shortcut to where we wanted to go, but certainly a shortcut to whom we wanted to become.

Color My World

Inspired by a change on my writing blog, I decided I needed more color in my life.  So, I changed my blog background.  I love the beach, so it's no surprise that I went with that theme.  I like the color change.

As you probably have guessed, I haven't been doing well lately.  Not unexpected.  I'm recuperating pretty well, though, and I'll be back to blogging soon.

Changing the background wiped out my blogroll, so if I missed anyone on my sidebar, put it down to brain fog and remind me. =)

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.

Missed It

How ironic is it that I was having such a bad CFS day that I couldn't post for MECFS Awareness Day?

My First Author Interview!

As in, I'm the author being interviewed!  How cool is that?  Thank you, Dorothy, it was a pleasure to participate.

We Do Write

Count Me In!

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.

Monty Python Must Have Been Thinking of Me

This looks a lot like my fight with CFS:




I think I'm at the stage of one-footed head-butting.

Too Much, Too Fast

Yeah, I'm probably the only one who has done that, right?

In fact, I bet most of you were expecting this post after my last, highly optimistic post.

What is it about a sudden burst of energy that catapults us into unsustainable activity?  Tsk, tsk, I should know better by now.

Well, I certainly took advantage of feeling a bit better.  Pain has become a bigger issue for me lately, and so I revved up my exercise program a little to counteract it.  Nothing aerobic, of course -- just a bit more stretching and strengthening.  I have to admit, it felt soooo good!  I just should have taken it a little more slowly, and not added quite as much as quickly as I did.

The other problem I ran into was a renewed interest in cooking.  I've always enjoyed cooking -- not every night, necessarily, but I loved trying new recipes and using my lovely family as guinea pigs.  Plus, since  my new haircut, I decided I wanted to lose a little weight to look even more fabulous.  Since I can't exercise my way down to my goal, that means eating better.

I discovered some wonderful freezer recipes, and I could not contain my enthusiasm.  I've made Lazy Lasagna, Ham and Cheese Ziti, Spinach Soup, Chili, Tex Mex Rice Casserole, and Chicken Divan.  (I've got all the recipes on my recipe blog, The Flagging Chef.)  So, now I have eight dinners and seven lunches in the freezer, ready for those nights when I don't feel up to cooking and usually order pizza.  They are all pretty easy recipes.  I did all right on those days I had my kids helping me cook.  I got a little crazy and made the Tex Mex Rice Casserole all by myself, and that was a big mistake.

Add to that a big stressor for me:  We're going to have someone come in and clean once a month.  She came over for an initial consultation on Friday.  I am humiliated by my home.  Back in the day, I took pride in the fact that although my house was occasionally cluttered (six kids, you know), it was never dirty.  Now, once you get past the clutter, it is very dirty underneath.  This is long overdue, but getting started is a horribly emotional ordeal for me.  She starts on Wednesday; I know the payoff will be worth it.

So, I'm not exactly in a crash.  That alone tells me I'm still on the mend.  I just need to remember that the road to recovery is a bumpy old thing.  I need to slow down and scale back a little.  Be gentle with myself.  Have a little chocolate.

Signs

Signs I may be heading out of my relapse:


Thursday, I was able to shop AND cook dinner!  Go me!

I got my hair cut yesterday after EIGHT months!  I feel sassy.

My Life Is Different Now

I suppose that's an understatement.

My CFS was a slow onset case. I don't have a CFS anniversary per se. I have a vague idea that something changed around summer of 2006. And then the changes snowballed. I suppose we all take a look back from time to time and see where we were and where we are. My life is different now.

It has taken me a long time to figure out that different doesn't always mean better or worse. I didn't choose this path. I didn't choose this life. And yet, that doesn't mean that this new way of living doesn't have value.

I think about the fast pace I was living before I became sick. I think about the direction I was heading. As my children were growing older and less dependent, I was moving away from my family and more towards me. I was growing an interior decorating business that showed some promise. I was reaching out more to my friends, becoming more social. I spent a lot of time volunteering at church. I supported my kids in their activities by driving them and being there for sports, scouts, clubs, and school.

When CFS hit, it stripped me of all those activities that comprised my life. There was a void. There was a panic. I had to find a new way to live.

It's interesting to see the pieces I've chosen to include in my new life. I am now anchored here, in my home, in my family. Instead of interior decorating, I am writing. My husband and I snuggle on the couch watching our favorite TV shows instead of spending the evening with friends. My moments with my kids are one on one, face to face, instead of driving in a car or with me as a spectator. I work a lot harder on personal spirituality. I connect with friends here.

Not better. Not worse. Just different.

Once I recover from CFS, my life will change again. I hope I balance the best of both.

Chuckle

Did anyone need a little pick me up today?

The Laughter Movie

A Question for the Ladies

Guys, you can skip this post if a little TMI makes you uncomfortable.



All right, ladies: Is it just me? That time of the month seems to make my CFS symptoms so much worse. Everything is magnified, and the progress I've worked so hard for fades away for the week. The headaches, the fatigue, the moodiness, the achiness -- it's like PMS intensifies my CFS and CFS intensifies my PMS.

Have any of you found a way to tame the beast and keep the suffering at a minimum? Any strategies for holding on to the progress you've made during this time?

So True

"Hope is the feeling that the feeling you have isn't permanent." ~Jean Kerr

And One More!

Wow, I've been out on the web making friends lately! I am also nominating Surprising Me for a Happiness Award. Stop by and say hi!

Did You Know Chocolate Helps CFS?

That's what they say, anyway! And I love any excuse for a little chocolate. In celebration of the wonderfulness of chocolate, I found this fabulous blog:

Dying For Chocolate

It's full of yummy recipes using chocolate. Just make sure it's a high percentage dark chocolate to get the full antioxidant benefits. I'm including it on my sidebar, if you ever want to visit again.

Feeling Happy

Thank you, Forgetful Girl, for nominating me for this prestigious and mood lifting award!

The rules:
1.)When you have received this award you must thank the person that awarded you this in the new post.
2.) Name 10 things that make you happy
3.) Pass this award onto other bloggers and inform the winners

So, without further ado, here are ten things, in no particular order, that make me happy.

1. The sound of my kids' laughter. I know I've mentioned this before, but there's just something about having a relaxed, easy feel in our home and hearing my kids' deep belly laughs that reassures me. I have felt how much CFS has handcuffed me as a parent, and it's good to know that they aren't that screwed up by it.

2. Making love to my husband, in all its various forms.

3. The beach. I have so many, thousands, of memories surrounding the beach, and all of them are perfect happiness.

4. Roasted marshmallows. My dad taught me how to make the perfect roasted marshmallow: finding the best coals, turning it around just right so it never catches on fire, ending up with a beautiful marshmallow brown and bubbly and crispy on the outside and a delicious gooey mess on the inside.

5. Sticky rice and mango. My husband and I went to a Thai restaurant for the first time on our 10th anniversary (many moons ago). We were stuffed, but the waitress was insistent to the point of rudeness that we try this dessert. It was pure heaven! It has never tasted quite as wonderful since, but I enjoy the quest to find that perfection again.

6. Wildflowers. Such surprising color in the most unlikely of places.

7. Reading. I almost said "reading a good book," but the bad ones are almost as fun, too!

8. Writing a scene and capturing the perfect emotion. The rest of writing can be torture, but getting something just right is exhilarating.

9. Sunshine and blue skies. There's a reason I live in Southern California! I can't stand the gray blah of winter elsewhere. Don't get me wrong, I know the snow is really pretty... the first day. It just gets old fast.

10. Learning. It is my safety blanket and muse. The first thing I did when I suspected I had CFS was research everything I could. It was comforting to me, giving me a (perhaps false) sense of control. I also love that "aha!" moment when something clicks and makes sense. For example, I just learned that the reason I hated The Lord of the Rings was because I'm not a milieu person. Go figure!

I could go on -- and I will, just one more thing. My blogger friends make me happy. I couldn't survive this illness without you. You inspire me, give me hope, teach me, and amaze me. There is so much strength and compassion in this community, and I lean on you more than you know.

I'm going to pass this award on to a few people new to our blog community that I've recently discovered.

Alison at blog Wormwood
Lee Lee at CFS 'n' gay
Chris at sickandtired
Alex at Life with ME/CFS (aka the Cabbage Stalk)

Orthostatic Intolerance

CFIDS.org is hosting an upcoming webinar on orthostatic intolerance. You can find out more information at http://www.cfids.org/webinar/series2010.asp.

Learning to Dance in the Rain

Click here:

Learning to Dance in the Rain

How I dance in the rain:

I lie in bed listening to my boys play and giggle.
I curl up on the couch and watch my favorite shows with my husband.
I read good books.
I connect with and gain strength from you.
I eat my lunch outside when it's sunny so I can feel the sun on my face.
I hug my kids a lot.
I find funny things to laugh at.
I welcome people who come to visit.
I play World of Warcraft.
I keep an emergency supply of chocolate.

How do you dance in the rain?

Going to the Well

Hello, my cyber fount of knowledge! I have a question for all of you. Has anybody tried any homeopathic remedies for CFS? What has been your experience? Thank you!!!

Tender Mercies

I came across this on Facebook today. I think there are some of us struggling lately who may want a little comfort. Although it is from my religion, LDS, it is a universally Christian message. I hope you don't mind my sharing it.

After the Storm

(ramblings)

Such pain in my heart today. I try so hard to endure it well, to hold onto hope, to find joy in the journey. Sometimes it just bubbles out of me. Of course this journey is difficult and painful. Giving in once in awhile doesn't negate my handling the situation with patience and grace. It's simply choosing not to deny the reality of the situation.

This is real suffering. That doesn't mean that there is not merit to it, that there isn't an abundance of joy. It's simply acknowledging that this sucks.

I think I started crying not because I realized that this sucks, but because I felt God acknowledging to my heart that this sucks. Yes, it is hard. Yes, I hurt. Yes, every moment of every day is a struggle. Yes, I want to be more. No. I can't.

Perhaps it's a reminder to be gentle. I can't beat myself up over what I cannot control. Pushing myself over little things is counterproductive, short term, not big picture. They are not as important as I am. Rom tries to remind me of that. Even with my limitations, he tells me, I am important to them. Now, my Father is telling me the same thing. I am important to Him.

I will take it easy today. I will be gentle. I will do one thing at a time. If I only do one thing, that is OK.

Rollercoasting

I feel like I'm on a roller coaster these days. Last week, I had one day where I felt absolutely fantastic! I woke up in less than agony, I felt bright and almost refreshed. I could barely contain my energy long enough to get my obligatory rests. I never felt that heaviness that haunts my eyelids most hours of the day. The sun was shining and warm. Everything felt so good.

The very next day, I was feeling kinda icky. Not crashed, not wiped out, just not quite there. My body welcomed my rests, my eyelids begged for more. It was annoying!

So I've vacillated back and forth, sometimes feeling pretty darn good, sometimes feeling not quite right. Go figure.

At least, the roller coaster feels more like this:







than like this:

What? Me a Sugar Doll?

I woke up this morning to find out that Sue has nominated me for the Sugar Doll award! I am to tell you ten things about myself, and then nominate some other deserving bloggers. I have to admit, I'm going to cheat a little -- here are the ten things I told Kerry over at Lemon-Aide.

1. I once licked a snail because my big sister told me they taste like bubble gum.
2. I hiked to the top of Squaw Peak in Utah my freshman year of college. I didn’t know they had a trail.
3. I think chocolate makes the world go around.
4. My husband gets a pedicure with me every month.
5. I went skinny dipping with my best friend at a public beach in the middle of winter.
6. I once caught a baby octopus.
7. I served a Mormon mission in France for 18 months when I was 21.
8. I have a bachelor’s degree in zoology.
9. I have six kids, which is the closest I’ve ever come to using my degree in zoology.
10. I’m working on writing a novel.

I'm nominating:

Forgetful Girl
Lyme Is Crazy
Alyson at Alysons CFIDS Blog

Inch by Inch

I think ... do I dare say it aloud? ... that I may be getting better! It's that ephemeral something that I can't quite put my finger on. I wouldn't say that my capacity has increased. It's just that, during the day I feel a little lighter, a little clearer, a little more present. My body is making more sense. When I've exerted myself, I feel worn out, and my rests are a little longer than usual. If I've had a quiet day, I don't feel like resting at all (see my last post!), and I have to force myself to stay in bed for half an hour. A few moments of activity aren't weighing me down for days; I actually feel like I'm bouncing back quicker.

Now, when I say bounce back, I mean back to my new normal. I'm still nowhere near where I was before the summer. However, I no longer feel like one of those rock climbers stuck on a cliff with nowhere to go, fearful that if I move I'll slide further down or even plummet to my death. I'm reaching, and I can see tiny handholds, and there is a slow, steady path ahead of me.