Despair

I don't give in to it often. Just once in awhile, there is a splinter, then a crack, finally a crashing down of the weight of the enormity of this disease. It catches me by surprise. I let myself cry, great wracking sobs if no one is around. It lasts about half an hour, I suppose.

The funny thing is, it doesn't change anything. Just like hope, despair is impotent to change anything about the way I live my life. I still shower and make my bed. I do some yoga. I eat a healthy salad for lunch. I take my supplements and try a new protocol. I nag my son about homework. I go to bed at a reasonable hour.

I do my best with what I've got, because really, is there any other way?

Tomorrow is always a better day.

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.

Rebel, Rebel

I know I'm dating myself here, but this was a really popular T-shirt back when I was a teen. I am relating to this little mouse today.

I had seen so much progress, I grew cocky. I was so busy planning my recovery and the many wonderful things I was going to slowly introduce back into my life that I didn't notice the creeping crash. My body warned me, it certainly did. I knew that I couldn't continue to cheat CFS like I was and get away with it. I had been lulled into a sense of security because I had rebounded so well following a few other periods of high activity. I thought I would be fine if I just took it easy again for awhile.

So, after a serious CFS beat down and tears of defeat in my husband's arms, I am humbled. I am done rebelling. I'm giving in. I am not going to fixate on the external factors that I can't change -- the responsibilities and stresses that are the nature of my life. Instead, I am going to focus on what I can change. I'm adding another rest period into my day, and I'm going to be more consistent with my yoga. I'll work on stress-reducing techniques. I'll remember how to say "no."

It never gets easy admitting that you are ill.

To Be, or Not To Be ...

I'm mad. Really, freaking mad. I know it is not uncommon for people with CFS to feel anger. I know it is one of the stages of grief, and we have, indeed suffered such a great loss. But I thought I was passed that. I didn't expect it to sneak up on me again.

My husband and I were planning on taking the kids to see "Up" at our local theater this weekend. Today, he calls and tells me that we need to go tonight, because it looks like it will no longer be playing by this weekend.

I worked yesterday. Also, my 7 year old son came into bed with us in the middle of the night last night because he was feeling sick and couldn't get to sleep. It took three hours of scratching his back, smoothing his forehead, chatting a little, and snuggling before he finally fell asleep. Today is supposed to be the day that I stay home, take it easy and recuperate.

Do I go with my family, or let them go without me?

So, I guess the question isn't really "To be, or not to be" (no need for suicide hotlines at this point, but thanks for the thought!), it is "To be, or not to be ... what?" What do I choose to be?

Are you like me? Do you have this intuition that tells you exactly what you need to do to recover? I've put all the pieces in place -- proper sleep, proper nutrition, supplementation, rest periods. Pacing. I know that the only thing left for me to do is to always keep within my energy boundaries. No more boom-bust. No more push-crash. No more two steps forward, one (or two or three) steps back. I just need to always stay within my energy boundaries.

What do I choose to be? An invalid, or a wife and mother and business owner? Do I really have a choice? I don't think so. I am a wife, a mother, and a business owner. So, becoming healthy again isn't really an option.

And I'm mad.

Just Thinking ...

I woke up feeling pretty crappy today. My husband took the kids off to church, so I'm home alone with my thoughts. They have been rather strange and random, I must admit. I think they stem from lingering dreams.

Sometimes, I get caught between sleep and waking. I feel like I am being shown a deep epiphany. But, when I wake up fully, it doesn't seem to make quite as much sense as it did while I was dreaming.

Today I had an image and a thought. The image was a vast wasteland, complete and utter destruction. There was debris everywhere. It looked like a war zone or the end of the world. As far as I could see, there was nothing left. Everything was gone; everything was destroyed.

The thought I had was that there is energy inside me that I am not able to access. It is still there, I just can't reach it or tap into it or unleash it or unlock it. I can feel it during my days when I want so badly to clean my home or walk to the park or play a game with my kids. It's like that phenomenon when you've had a limb amputated and it feels like it's still there. It feels like I should still be able to do all those things. The restrictions I place on my self seem so unnatural. I'm still literally surprised when I overdo it and find I am tired. I look in the mirror, and I see the dark circles and the ashy skin and the wrinkles that chart my journey with chronic fatigue, and I am surprised.

The energy only seems to manifest itself at night, when I'm trying to fall to sleep. Then it dances all around me, taunting me, showing me it still exists, daring me to grab a hold of it. It seems to be laughing at me. I fall asleep thinking that there must be some way to harness it again. Tomorrow. When I wake up.

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.

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.

Grieving, Coping, or Somewhere In Between

The rules: Give yourself permission to feel your emotions, whatever they are, without judging, explaining, or suppressing. Then, let them go.

I feel afraid that my family will fall apart and resent me for not being a good wife and mother.
I feel afraid that I will remain in this 60 year old body.
I feel sad that I am missing out on special memories like my kids' birthday parties and going to the pumpkin patch and late nights with my husband.
I feel frustrated that there are a pile of things that need to get done, and I can't do it.
I feel angry that my family keeps waiting, waiting, waiting for me to get better instead of filling in the blanks.
I feel hurt that they won't do more to help me get better.
I feel lonely in trying to battle this disease.
I feel disappointed I'm not getting help.
I feel confused at how to ask and sad that I should have to.
I feel sad that I am a burden to those I love, that I am placing burdens upon their shoulders that were never supposed to be theirs.
I feel powerless, because no matter what I do, it might not be enough to heal.
It hurts me that God would do this to me.