Friday Night Lights

My husband and I have a standing "date." Every Friday night, we watch "Friday Night Lights" together. It is such a good show! The writers have done a fantastic job making the characters real. My husband and I relate to the fun relationship between the coach and his wife. We also get a kick out of the very realistic teenagers!

One of my favorite characters is Jason Street, the star quarterback who has a spinal cord injury that changes his life. Now confined to a wheelchair, he goes through a lot of emotions and difficulties adjusting to his new circumstances. It seems to be a bit of trial and error as he starts to make sense of his new life. What inspires me most is how he still finds a way to follow his dreams, even after his entire life is turned upside down.

One of the things that I try to do is remember that everyone has their "invisible illness." Everyone I meet has some secret pain, past or present, that keeps them from the life they originally imagined. I'm not the only one who has had a curve ball thrown at them, and I certainly won't be the last! I think I'm trying to find my own way, through trial and error, to make sense of this new life and to still follow my dreams. And I think I'm doing OK.

A Sunny Day

I got a phone call from my friend, Josie. My son had left his pillow at her house the last time he spent the night. She was taking her boys to the park right after school, and she suggested I meet her there to pick it up.

I rarely do things spontaneously -- even less often now that I have CFS. I knew my boys would love it if I did more than just pick up the pillow, so we actually got out to play.

My boys ran like banshees all over the park, laughing and playing with their friends. Josie and I had a nice chat while she pushed her baby in the swing. The sun was warm enough to coax me into taking my sweater off. It felt really, really good to just be outside for awhile.

So, my eyes are twitching right now (my "tell" that I'm overcooked), and my back is a little achy. I've been a little more under the weather than usual the last couple of weeks. I feel a zombie fog coming on. But, I don't think I regret it. Nope, not at all.

Pity Party

Sometimes the full weight of what this disease has DONE to me hits me like a ton of bricks, and all my optimism and good intentions fly right out of the window.

Any ideas on how to really indulge in a good pity party? I know tomorrow, I'll wake up and it will be a new day and I will find the strength to get back to work. But what do you suggest to help get through a really crappy today?

I Think I May Be on to Something Here

Thank you to Jo and Rachel for a very informative discussion on rest. I have been pacing ever since I discovered the technique; however, I have never actually taken scheduled, lying down with your eyes closed rests. After reading their posts and overcoming my fears (what if I fall asleep and can't get back up? what if I'm incapacitated and not around for my kids? what if it messes up my circadian rhythm and I can't get any sleep at night?), I decided to give it a try. So, I have scheduled two 30 minute rest periods into my day. I go upstairs, turn on some classical music, put on my spa sleep mask, set the timer, and REST.

So far, the results have been amazing! My fears were, not surprisingly, unfounded. Most of the time, my mind is still racing (although I try to keep away from worrying), so I don't actually fall asleep. 30 minutes is the perfect amount of time. It cuts off the energy drain and gives me a little bit of a boost. I'll know better this week, but I think it helps me rebound from difficult days a little better. I'm still getting to sleep ok at night. My kids have thus far survived without me for 30 minutes at a time.

I have been trying to develop a wellness program to help me inch my way back to recovery. I think this may actually be a big piece of the puzzle. I'm feeling very hopeful that I have one more tool in my toolbox to manage this disease.

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.

When Will I Learn?

When will I learn? How many years have I been going through this? How many times have I TRIED to push through, only to crumple into a ball of tears, going home with my tail between my legs?

I knew it was a bad week for me. But, I got a phone call on Thursday asking if I could teach a Sunday School class for a friend who was going out of town. Does this sound familiar to anyone? Of course, I couldn't say "no", even though I KNEW I shouldn't be doing this. I was hoping against hope that I'd be better by today.

The alarm went off this morning, and I could not get out of bed. I watched my family get ready for church, feeling tremendous guilt that I was not joining them. I didn't even do anything to help in the chaos. I thought I could skip the first part of church and show up just in time to teach the class. After my family left, I finally got in the shower. All the signs were there -- this was not a good day! Nonetheless, I put a nice skirt on, blow dried my hair, put on some make-up, and headed out the door.

I arrived just a couple of minutes early. I went to tell Anna I was covering for Suzie today -- and she had to ask, "How are you feeling today?" Off went the water works! I tried to tell her I thought I could make it through the class, but she gave me a hug, took my materials, and gave them to someone else to cover. I'm home now, feeling silly, and berating myself for once again NOT LISTENING!!!

Dang! When am I going to get a handle on this?

A New Look

I've been working on my website, and I decided it needed a makeover! I've chosen a different look and feel. I'd love your comments -- please take a look and tell me what you think!

http://www.chronic-fatigue-community.com

It's a work in progress. I have tons of ideas for adding pages to my website, but hey -- I have CFS! It makes for a slow go sometimes.

A Gift from My Sister

I don't often talk about my faith on this blog, even though it is a huge part of my life and gives me the ability to cope with CFS. I worry that people will focus on this difference and be less inclined to embrace the similarities we share. But, today, I found a wonderful post on my sister's blog that I feel transcends religion and I think I just have to share it with you. The title is "Boulders and Pebbles."
"In church on Sunday, the sacrament meeting topic was adversity. I had several thoughts go through my mind as I struggled to listen. This is not an easy thing since my kids are wild animals. Anyway, as they spoke I thought of one of my favorite Scriptures. It is 2 Nephi 2:25, in the Book of Mormon. It says that "men are, that they might have joy." For years, I thought that it meant that our purpose on earth was to be happy. Then a while ago I read it in context with the whole chapter and I realized that our purpose was to have opposition in all things. That in order to have joy, we must have misery. It really struck me that our sufferings are a show of love, as much as our blessings. They both are there to help us feel joy more fully and more importantly, to learn and become more like our Father in Heaven.

"Bro. Chong, the last speaker, had a great object lesson to go with the topic. He said that when you hold a pebble right up in front of your eye, it looks like a boulder. As you pull it back, it comes into perspective and you can see it for the small pebble it is. I realized that so many of my trials in life have been like that. As I am going through the trials, they seem overwhelming and insurmountable. Then, looking back, after they are over, they seem like they were simply another bump in life. Usually a bump to help me prepare for the next bump. Unfortunately, like the pebble, it takes distance to usually get the whole perspective. Next time I am in a rough spot, I am going to try and remember this. I will keep telling myself, this is just a pebble! Maybe when it is all said and done, I will make a mosaic."


This is my goal -- to take the best (if not the easiest and most pleasant) parts of my life and create something beautiful and amazing.

Waking

Waking up and fleeting consciousness are not the same thing. Some mornings, I'll surface periodically, glance at the clock, tell myself, "I really need to get up," and then drift back into oblivion. Waking up is opening my eyes, noticing the sun streaming through the window, and having thoughts storm into my mind. I can still lounge in bed, but there's no question -- I'm not going back to sleep!

I used to think that I could tell what kind of day I'm going to have based on how I wake up. If I'm awake right away, it's going to be a good day; if I'm drifting for hours, I'm in trouble. Now I think it's more of an indication as to how my yesterday was -- did I take care of myself, or did I overdo it again? Either way, a late morning is a signal to be gentle.

I'm definitely learning how to listen to my body. Listening is the first part; learning to obey is next.

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.

Good Times, Bad Times

Good times: I wake up between 7 and 8 am. I bask in the sunlight for a few minutes before getting out of bed.
Bad times: I wake up between 10 and 11 am. I curl up in a ball and stay in bed for another 45 minutes.

Good times: I make the bed and do yoga.
Bad times: I make the bed. I ... will ... do ... yoga.

Good times: I go downstairs to check my e-mail, finances, and favorite blogs while I eat breakfast.
Bad times: I go downstairs to check my e-mail, finances, and favorite blogs while I eat breakfast. Then I read old posts and everyone's comments. And I visit blogs listed on blogs listed on blogs. And I Stumble It for awhile.

Good times: I do some belly dancing!
Bad times: Heck no!

Good times: I jump in for a quick shower.
Bad times: I jump in for a shower. After all the soap is rinsed away, I stay there under the hot streaming water. I watch the pretty drops of water on the glass door. I lose all track of time.

Good times: I empty my hamper and throw a load of laundry in when I go back downstairs.
Bad times: Not!

Good times: I do a little something -- pay bills, post on my blog, work on my website, file a few papers, tidy around the house, or even go shopping.
Bad times: Two words -- computer games.

Good times: When the kids get home, I check to make sure they've done their homework and their jobs before they go outside to play.
Bad times: "Sure, honey, whatever you say."

Good times: I cook a simple yet healthy and delicious meal for dinner.
Bad times: I send my oldest to bring home some take-out. Thank goodness she can drive now -- it saves so much on delivery!

Good times: When my husband gets home from work, I greet him at the door with a kiss. I listen to how his day was, and I spend an hour -- or (gasp!) two -- watching TV with him.
Bad times: When my husband gets home from work, I grunt at him. I'm still on the computer, begging for 8 pm to finally get here!

Good times: I go to bed. I read a little bit and do some gentle stretching and relaxation exercises to help me sleep.
Bad times: I fall into bed. I curl back up into a little ball. I can't believe it takes so long to finally fall asleep!

It's A Miracle!

This had better not be a hoax!!! My life-long love affair with chocolate is suddenly not only being validated, but (gasp!) prescribed for my chronic fatigue? There is a God, He has a wonderful sense of humor, and I love it when He sends gifts!

Chronic Fatigue Syndrome Symptoms Reduced By Dark Chocolate Consumption