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.

Houseworkaphobia

I am afraid to clean house.

There is actually a rational explanation behind my irrational fear of housework. During the first year of CFS, when the doctors couldn't tell me what was wrong or what to do to fix it, I did what we typically do -- I pushed myself to try to keep up with my "normal" life. As a result, I was in a constant, 24/7 zombie mode. The fatigue and brain fog were so severe that I couldn't maintain a decent conversation with anyone. I spent hours on the computer, my only respite. My family thought I was addicted. They would come in and interrupt me, trying to interact. They would say something to me, and I'd have to stop, look them in the eye, and still ask them to repeat themselves three or four times before what they were saying made any kind of sense to me. I would still be on the computer when my husband came home from work at 9 pm. I would be desperate to get some sleep, but I was so tired, I couldn't even find the energy to get up and walk upstairs to bed. It was bad. It was ugly. My family suffered.

Then I discovered I had CFS! And pacing! And I started to live within my "energy envelope". Sort of. I'm still working on that. But, anyway, the brain fog began to clear for moments at a time. I could actually talk to my children. And parent them again. It was difficult, because they had become quite feral and did not take kindly to the retaming process. Nonetheless, I found the strength and energy to stick with it, and we are becoming a normal family again. I actually played a board game with my children the other day. It was amazing.

So, my great fear is that if I start doing housework again, I will no longer have energy left for my family! I need to keep an energy reserve for those unexpected moments that require me to parent. I don't want to be unavailable to them again because I was wiping the kitchen counters, or scrubbing the toilets, or sweeping my front porch.

Still. I want to be able to bless my family by creating a more peaceful, inviting home for them ... and me. I'm in the middle of reevaluating how I spend my time. I am coming to realize that too much time on the computer is as harmful as overdoing it physically. I need to start "switching" activities, and maybe I can add a few minutes -- 5 to 10 at a time, maybe -- of housework to my day.

I am going to face my fears and start FlyLady(FlyLady.net) this month. I discovered FlyLady when I was pregnant with my youngest son. Her program helped me dig out of disarray after months of morning sickness that left me unable to do anything. I realize things are different this time, so I'll have to modify it and keep it within my abilities. But I think I can do this.

AND keep my cleaning lady. ;)

Messy

I have six kids. Even before CFS, my home was barely tidy on the best of days. The day I conceived my first child I knowingly and lovingly sacrificed shiny surfaces and clear pathways and anything white. I am OK with that.

However, I must admit things have gotten out of hand since CFS. I thought I had been doing a pretty good job of teaching my children work and responsibility. But once I got sick and could no longer nag them to do their work, it all went downhill rather quickly. Instead of doing a job right, they were doing it just good enough -- and that bar kept getting lower and lower.

I finally recognized that we needed help. I took my friends up on their offer to clean my home. They were wonderful and spent a week digging us out. I could breathe again! The kids could have friends come over! We were not too embarrassed to open the door when the doorbell rang! But old habits returned quickly, and messy was creeping up on us again.

I am now having a woman come twice a month to clean. Yesterday was her first day. I did not spend the entire morning frantically cleaning before she got here -- you all know how that would have turned out. Well, she wasn't happy that she had to clean around the clutter! She made it very clear she disapproved of how messy my home was. I explained I was sick, but she obviously didn't get it. She wanted to know why my kids weren't helping out more. She gave me instructions on how she wanted it picked up better when she comes next time. And, she said she needed to get started earlier in the morning than I had her scheduled.

I'm just wondering what ever happened to discretion and respect in the employer-employee relationship. I am paying her to clean my house. That implies that yes, it is dirty. Why the disdain? If I were the kind of housekeeper she thinks I should be, she wouldn't have a job! Does she really want to encourage me to get on top of things? Would the satisfaction of knowing she shamed someone into keeping a clean house compensate for the lack of income?

By the way, she was fantastic and worth twice what I paid for her services! I will happily endure her huffs of indignation when she comes back in a couple of weeks.

ME/CFS Awareness: How CFS Affects Me

Yesterday, I blogged about my symptoms. Today, I am blogging about how it has affected my life. That means a trip down the old memory lane. It isn't something I allow myself to do often, because that usually means comparing myself to the "old" me, and that isn't always pleasant!

Before CFS, I was:

An interior decorator
A church volunteer
A gardener
A good homemaker
A genius
An exercise enthusiast
A social friend
A good wife
A really, really good mom
An avid cook
A nature lover
A shopper

Living with CFS is like living inside a box. Most of those things from the "old" me no longer fit inside my box. The things that are most important to me have to be reduxed just to be able to fit.

I am no longer an interior decorator. That was just a fun hobby for me and completely superfluous. I now volunteer one hour a month at church instead of several hours a week. My garden now consists of a single pot. My current exercise routine is about 15 minutes of stretching a day. I am hoping to be able to add 5 minute of aerobic activity soon. I can do laundry. I visit with friends once a month at my book club. I can cook a quick and easy meal a couple of times a week. I shop online. I still love nature; I just haven't visited in awhile!

My husband is a good husband. He loves me and supports me in every way. He has lovingly lowered his expectations.

Here's the hard part. I am no longer a really good mom. You see, being a really good mom is really hard work. You have to be able to set structure and follow through with consequences when it is breached. You have to be able to weather unhappy children. You have to be able to teach them skills to become independent. You have to work with them side by side. You have to be available to them when they need you, not just when you are feeling good. You have to get up pretty early for the little ones and stay up late for the older ones.

Now, don't get me wrong. I still love my children ferociously, and that goes a long way towards making up for faults. But. I can see how much this has hurt my family. I can see that they are a little lost without me. I can see some crumbling around the edges. I can see their yearning for their mom. You know, the "old" me.

Tipping Point

I had an experience last night that normally would be too painful and personal to share -- except that I know that many of you have been here before.

My husband and I met with our very well-intentioned ecclesiastical leader. He wanted to know what he could do to help our family, and he was also there to counsel us on what improvements we could do, as well. I must say, he approached the meeting with love and concern. This is a very good man, whom I love and respect as well. He is not, however, very well-spoken -- he's a man who has worked the land all his life, so he can be a pretty blunt.

He encouraged us to set stronger boundaries and responsibilities for our children. He told my husband that, although he works hard starting up our new business, he can't take it easy at home. He needs to be the enforcer and work alongside the kids to keep their feet to the fire. All very welcome advice, I must say!

Then, he told me he was going to likewise be blunt with me. He said, "I know you have a problem. Get over it."

What?

I tried to explain that I have a medical condition, and that I have been trying to "get over it" for the last two and a half years. He kept repeating, "I know you have a 'problem'" but would not actually concede it was a real medical condition. He then went on to tell me stories about people who defied modern medicine and were healed -- a girl who was told she would never walk, who walked; and then she was told she would never run, and she ran. A boy who had asthma so bad that he was tented three times and his parents were told there was nothing more to do for him who eventually went on to play varsity basketball. A woman who had double vision but taught herself how to play the piano.

Would he have told me to "get over it" if I had MS? Or cancer? Or a stroke? If I were a paraplegic, would he tell me I could get up and walk -- if I only had enough faith?

My shock and disbelief overshadowed one bit of counsel that was actually appropriate: he suggested that I not allow my "problem" to consume my attention, my focus, and my life.

What if, instead of buying into the stigma that people with CFS are lazy, crazy, or depressed, he had been informed about CFS? Maybe he could have counseled me to set priorities and be aware of how I use my precious "good" hours during the day (well-needed advice, I must admit; I can waste time sometimes). Maybe I would have left with some ideas that would strengthen me as a wife and mother, that would bless our family. Maybe I wouldn't have come home and cried myself to sleep.

So, I have been nervous about starting my e-mail campaign for ME/CFS Awareness. I know that this is exactly what I am opening myself up to. But, this is the tipping point for me. Good people like this man need to be aware of what this disease is and what it does to people. I believe it is just like "Horton Hears a Who" -- if enough of us raise our voices, then maybe, just maybe, we'll be able to finally pierce the surface of ignorance and we will finally be heard.

Sweet Things

Cute things my boys said the other day:

Gabriel, age 8, was pondering the other day and told me, "You know what's weird, Mom? Even though you have chronic fatigue and are really tired all the time, you're still really nice!"

Gavin, age 7, took in some bottles to recycle for Earth Day. As a reward, they gave him a coupon for a frosty at Wendy's. He told me he was going to bring in another bag of bottles to get a coupon for me -- "Because they have chocolate, and chocolate is good for your chronic fatigue!"

Oh, I love those boys!

The Results Are In

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

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

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

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

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

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

I Miss My Kids

I've never been the kind of mom that drops everything to play a game with her kids. It just doesn't cross my mind that they would be interested in something like that. I grew up in a family of eight kids. I was always playing/fighting with brothers and sisters, roaming the neighborhood with friends, or hiding out in my room with a book. I didn't pay much attention to what my mom was doing, but I know we were fed and clothed and loved.

About eight years ago, I started going through what I've named my "Job days" (as in Job from the Bible). We were forced to move into a tiny 1200 square foot house. I had four kids and was pregnant with number five. Number six followed soon after. My husband was going to school full time and working full time. We had very little money. An incident at school forced me into homeschooling for three years. On top of it all, I was going through an experience that sent me into a deep depression. It was all very overwhelming.

And yet, I look back now, and it was an amazing time with my kids. I was a good teacher. I remember my then 8 year old daughter getting so excited at finding spores on a fern leaf. My five year old son taught himself to read and became an avid reader. He was also amazing at math. I was creative, and we had fun.

I was also my son's Cub Scout leader back then. I remember Blue and Gold dinners, and selling cookies for a fundraiser, and making a volcano just like you see on TV, and the pinewood derby. I was so involved, and we had fun.

The charter school through which I did my homeschooling often offered field trips to wonderful places like Cold Stone Creamery, the firehouse, or the zoo. I remember packing up my six kids and double stroller and heading out alone to Sea World or the Wild Animal Park. I always felt some trepidation attempting these excursions without my husband, but we had such a wonderful time! The kids were angels -- no whining, arguing, or fighting. Just pure excitement and joy. Every time, on the way home, I would compliment them for being so good and making it so easy on me and so much fun to be with them.

When we moved, the kids went back to school, and I wasn't so completely engrossed in them anymore. But we still had fun -- trips to the snow, to amusement parks, to the beach. Those family outings were wonderful.

Now.

My husband took my kids to the snow Wednesday this week while I stayed and watched the store. I got to hear about what a wonderful time they all had. My youngest told me story after story. And I started feeling sad. I miss them. CFS has slowly but surely taken away my family outings, because I'm just not up to all day events. Or even half day events, or events longer than an hour. We went to dinner at my sister in law's the other day, and it has taken me almost two weeks to recuperate. My kids are now a lot like I was back in the day (minus the fighting, thankfully). They play together and with friends. They hover sometimes, like they would like me to do something with them, but I'm at a loss. When I didn't have a friend in the world, they were my best friends. And now, somehow, they are not.

I miss my kids.

Who knew that I would some day look back on that dark period in my life and feel gratitude and fondness for it.

Lucky Russ

I know I'm not like normal people.

My sister in law called the other day. The father of our brother in law was in the hospital. Although we knew he had health problems, when he went in this last time, they found cancer. With the complications of his other health conditions, he wasn't expected to live very long. My sister in law was asking for the fasting and prayers of our family -- "You never know," she said. "Miracles can happen." I offered my sympathies and promised our faith and prayers, and then I hung up the phone.

I thought, "Lucky Russ."

This isn't something I say out loud, ever. Normal people really don't understand. But, I'm just not afraid of death. I think it helps that I have deep religious convictions. I believe in life after death; I believe that when good people die, they enter a state of peace, joy and rest. I believe that you get to be reunited with loved ones. Death is not terrible for the one who dies, only for those left behind to mourn.

But, even if it turns out that somehow I was duped and all those long-held convictions aren't true -- that you die and then poof! cease to exist -- I'm ok with that, too.

Living life is HARD. And I have to admit, it got a lot harder when I was hit with CFS. All those responsibilities still on my shoulders. All those people with sky high expectations. The same people I let down regularly. I brought six beautiful babies into the world, believing I was a good mom and would raise them to be movers and shakers and changers of worlds. Now I work so hard just to be a decent mom, someone who doesn't screw her kids up so badly that they have stumbling blocks to their potential.

Now, before you panic, I'm not at the point where I would actually consider taking my life. I've been there before, long before I had CFS, and I survived that. Maybe that's why I'm usually able to approach my trials largely optimistic. Even CFS isn't as bad as that time in my life. And I recognize that there is an element of ingratitude in this -- I know I am abundantly blessed, and my life is very, very good. But I also know that God understands and forgives me, because I am a good and loving person, and I do the very best I can.

Still. Lucky Russ.

Being a Mom is Making Me Sick!

Now, don't get me wrong. I have a wonderful husband and great kids! But, I have come to realize that there are some aspects of being a mother of six that keep me on the chronic fatigue treadmill.

I would LOVE to be able to really pace myself. In fact, I think it is the key to getting better. I can tell, when I am able to rest when I feel tired and stop before I reach my limits, that I am improving. I am hopeful! Being a mom, however, sometimes I do not have the luxury of resting when I need it.

Here's a sadly too common morning. My daughter doesn't wake up to her alarm. I have mine set as a back up, so I get up at 5:45 am, trudge downstairs, and wake her up. I go back to bed. She pops in to my room, turns on the adjoining bathroom light, does some girl thing in there, leaves. About 6:25, when my two oldest are supposed to have been gone, my son is by my side telling me he needs a dollar for gatorade for his water polo game after school. I hear the door close downstairs at 6:30, but it pops open again at 6:36. My son is in my room again, goes to my closet and takes a handful of candy I have stashed there. He leaves, and I hear the door close again downstairs at about 6:40. I'm pissed they left so late, so I'm seething a little.

My second alarm goes off at 6:50 am, and I wake up the other four children. They trudge into my room for morning prayers. After prayers, one son tells me he's not feeling well. I check his forehead for fever; nothing. He then tells me he's really just tired. I tell him if he stays home from school, he has to stay in bed all day. After some in and out fit throwing, he decides to go to school and call if he doesn't feel well.

At 7:15, he's back in my room. Apparently he can't find his shoes. I send him back out to look. He's in and out, throwing fits, mad that I won't help him look. His little brother finally comes into the room and offers to help. Problem solved by 7:30 when their ride gets here.

My husband gets up and in the shower. First one daughter comes in and asks questions through the door. She leaves, and the other comes in to ask questions through the door. They all finally leave a little after 8. I'm so exhausted, I can't move. I spend the next two hours dozing and waking, looking at the clock, thinking, "I have to get up! If I sleep much longer, I'm screwed tonight!" I finally crawl out of bed at 10.

Add to that all the activities that require my attention, regardless of how tired I am -- helping with homework, nagging about chores, going to parent/teacher conferences and other school related activities, driving them to choir concerts and water polo practice and Scouts and games. I'm not getting better, and as long as I'm a mom, I don't see how I can ever get better.