Taking Its Toll

We are moving to a new home at the end of this month.  I am very happy and excited about the move.  So many pluses -- it's single story, it has a pool, I can leave so much clutter behind.  And yet, there is that dreaded process of getting there. 

Oh, how I hate to move!  It challenged me to my limits before I got sick.  I know I need to pace myself and leave most of the work to my husband, my kids, and my lovely, helpful friends, but still, it is taking its toll.  Already the stress is biting in to my sleep.  It takes longer to fall asleep, and once I stir awake, there is no way to doze off again.  I have that nagging feeling that I should be doing something, even if I know I really shouldn't.  I feel the days ticking by like seconds on a bomb.  Are we going to make it in time?  Is it possible to get this done?

I see an inevitable crash at the end of the tunnel.  But I also see a wonderful new place for me to rest and recuperate afterward.

Any tips?  I'd welcome any ideas for getting through the next two weeks.

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.

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.

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

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. =)

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.

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?

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?

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.

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.

Determined to Do Nothing

I think I'm a smart girl.

I've had CFS for over three years. I know how to manage it, more or less. I know that I have to pace my activity; I know I need to incorporate rest every day.

Most days, I do pretty well. I have two scheduled rests during the day, one in the morning and one in the afternoon. I allow my body to determine the length of each rest period. It typically ranges from half an hour to two hours. It feels good, and I know it is good for me.

But ... there are simply some days when I become as rebellious as a two year old! I know I'm tired. I feel my eyes starting to itch. Maybe my eyelids are even drooping, and I'm fighting to keep them open. But I'm having so much fun! I am enjoying this day and don't want to miss a minute of it, let alone 30 to 120 minutes at a time. I'm an adult, for crying out loud! I want to stay up like a big girl.

Yes, I am an adult, and so I make the adult decision. I take my nap.

Past Fear and Frustration

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

To A Healthy New Year

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

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.

People's Health Blogger Awards

While visiting Sue's blog today, I noticed that she is up for a People's Health Blogger Award. I decided to vote for her, and I am putting a "Vote for Sue" widget on my sidebar. Sue's blog is one of the first I found when I discovered I had CFS and started blogging about it. I was so new and lacking in knowledge when it comes to this disease! Sue was always there to open my eyes and show me different paths to understanding just what was going on with me. It was from her that I learned about post-exertional malaise, orthostatic intolerance, and LDN. And she seemed a "success" story. Even though she still has CFS, she seems to manage it so well, and she still has a life! That is what I aspire to. So, in a way, I would say Sue has been my CFS mentor, and she has become a very understanding friend. I wish her the best of luck!

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.