Patterns

As I'm trying to navigate the latest changes in my health, I look for patterns that help me manage my time and energy the best I can.  So here's what I have figured out right now.

I have an energy window from about 10 am to 7 pm where I feel pretty good.  12 to 3 pm are my very best hours.  I try to schedule most of my activities for this magic window of time.

In addition, I'm finding that I have an activity threshold.  This is where I'm learning.  I can tolerate an activity for a certain period of time.  My body is very clear in warning me when I start to cross that threshold.  The first thing I notice is that my cognition begins to wane.  Next, my eyes begin to twitch, and the more stress, the more I twitch.  Finally, if I've really pushed it, then I have muscle weakness and shaking.

My goal these days is to discover my activity threshold.  In my excitement over my new-found energy, I have a tendency to try something and ignore my body's signals that I'm overdoing it.  Although I bounce back and recuperate faster than I did before, I'm sure that the bouncing back and forth can't be good for me.  I can only imagine that staying within my activity threshold would help me heal even faster.

XMRV Treatment: Four Months

I continue a slow but steady improvement with my health.  When I went to my last doctor's appointment, I told him I felt like I was getting better.  I said I'm able to tolerate social visits better, and that I was more mobile around the house.  He said that was nice, but he was hoping I'd be able to give him something a little more quantifiable.

Well, here's a quantifiable improvement for you:  I lost a couple of pounds!  I haven't changed my eating habits.  It's been due to an increase in activity.

I have been taking advantage of having a pool in my backyard.  I try to go in every day, now that the weather is so hot.  I'm sure that being out in the sun and getting a nice Vitamin D fix is helpful.  I am gentle in the water.  I walk the width of the pool a few times, and I float on my back.  I can feel the muscles in my body stretching in new ways.  It feels heavenly.  I do a couple, just a few, water calisthenics.  And on a good day, I'll take a few strokes across the pool.  Seriously, three strokes will get me to the other side.  Again, it's movement in a new way, and I'm always careful to not get my heart rate racing.

The daily exercise has been helpful for my sleep, too.  I've been getting a good nine hours a night.  I feel more energetic during the day, less dragging.  I still rest twice a day, but I have to force myself to stay down at least 20 minutes in the morning and half an hour in the afternoon.  Rarely am I tired enough to rest a full hour.

I also feel like my immune system is strengthening, just a little bit.  This is kind of scary.  I know I've had infections floating around my body undetected for some time; now, my body is starting to fight back, so I'm getting more "sick" symptoms like mucus and fever.  I tell myself this is a good thing, and for proof, I have more energy than I did before my "sick" symptoms.

I'm still not venturing out of my house much.  With summer vacation, there aren't too many reasons to.  I content myself with enjoying the improvements on this level without worrying about kicking it up a notch just yet.

I'm enjoying my essential oils.  I feel like they are helpful, especially with immune support and orthostatic intolerance support.  Who knows for sure, right?  The digestive aid is definitely helping, though.  I really like the new supplements I'm using, too.  I feel like they help me bounce back from overexertion better than I had before.

Meanwhile, the controversy over XMRV continues.  Personally, I am waiting for the Lipkin study that should be out by the end of the year.  I feel that if WPI has made a mistake, he'll be able to explain how instead of just saying, "Well, I couldn't find XMRV using my fast, cheap methods, so it must not exist."  WPI continues to be confident that true replication studies will support their findings.  In the meantime, I'm taking ARV treatment, and I'm getting better.  That's enough for now.

Improvements

After 2 1/2 months of XMRV treatment, I definitely feel better.  My need for rest has diminished quite a bit.  I still force myself to lie down twice a day, but I'm often antsy and peeking at the clock around the 20-minute marker.  I am sleeping less.  I don't seem to require 10 hours of sleep in order to feel good.  Often, I will wake at 6 am after 7-8 hours sleep, and I'll be unable to doze again. 

I feel uplifted, happy, almost exhilarated.  I find myself smiling a lot more.  It's like a weight, a fog has lifted from me.

I still have to be careful with activity.  I shopped WalMart the week before Easter.  It was way too big an outing for me; I should have started with something small, like a trip to the corner grocery store.  But I find that I'm chomping at the bit, eager to push the envelope just a little bit to see what happens.  Did I crash?  Um, yes, yes I did.  It was a big one, but it only lasted one day.  A crash like that would have normally taken me at least a week to recover from, if I indeed ever fully recovered.

I'm doing more around the house.  Not that much more, but noticeably.  It's interesting how I had unconsciously been conserving energy, calculating the most energy-efficient way to do anything.  I watched my husband put on his shoes one morning.  He picked one up, untied it, set it down, did the same with the other shoe.  Then he picked up the first shoe, put it on, and put on the other shoe.  I was amazed that he didn't realize that he was wasting so much energy by putting the shoe down and picking it up again.  I never would have done that!  Likewise, I always made a beeline for the nearest chair whenever I entered the room.  If the phone rang, I'd wait until one of the children handed it to me.

Yet, twice this week -- twice! -- I found myself pacing while talking on the phone.

The other thing that I've noticed is that I am tolerating social interactions much better. I've been out to dinner with my husband twice without any negative repercussions.  My sister-in-law dropped by and stayed a couple of hours.  I was exhausted, but it didn't cause a crash.  I can handle a drop-in visitor for about an hour now.  Talking on the phone is still challenging; I'm good for about 45 minutes of that.

Meanwhile, I'm enjoying creative pursuits with my writing, and I've started using essential oils for symptom relief.  I haven't been using them long enough to report anything, but so far I've found a couple that seem promising for pain and stomach problems.

Happy Mother's Day to all you Moms out there! 

Hopeful Signs

Two things: 

Yesterday I felt good -- all day long.

And today, I definitely notice less pain.

:)

XMRV Treatment: First Impressions

So, it's been three days since I began XMRV treatment, and so far... well, not much, really.  My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips.  Is that the "inflammation" that people talk about?  Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication.  I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia.  The other effects could very well simply be because I've been doing a lot of push/crash for the last month.  First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend.  I crashed on Sunday, but I felt pretty good yesterday.  I had that little bit of energy that makes me wander around the house picking up things.  Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point.  I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM.  I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day!  The kids helped make our special breakfast for dinner, and my husband treated me to See's candies.  I hope you all had a wonderful day, too!

Bumps In The Road

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday.  He agreed to give me a one-month trial.  One month, and if there are any negative side effects, he's pulling the plug immediately.  One month, and he would like me to be very honest in my assessment of my symptoms at that point.  He was careful to make sure I shouldn't get my expectations up.  He emphasized that it was very possible that I will not see any improvement.

I was thrilled.  I feel like his approach is the safest and best I can hope for.  He is exercising every imaginable caution.  He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment.  I'm OK with that.  I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless?  Well, let me reword that.  It definitely comes with a price tag.  I found out that my insurance doesn't cover the medication, and that it would cost about $1200.  For one month.  I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options.  I can upgrade my insurance, which would increase my monthly premium.  I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month.  Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see.  I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it. 

I'm leaning toward a combination of the two.  Pay out of pocket now, and then upgrade my insurance if it looks promising.  Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning.  Why?  It's not just the financial stress this will place on us.  We've shouldered financial stress before, very successfully, I might add.  No, I can't help but wonder, is it worth it?  Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities.  You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile.  And then something like this happens, and the old voices you have spent years silencing rise again to the surface.  The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?"  I think the answer would be more than a thousand dollars.  And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?"  I imagine his answer would be close to a million.

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 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 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!

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.

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.

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. :)

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.

Catharsis

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

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

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

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

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

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

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

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

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