Everything Has Its Price

My niece was married on Friday. I loaded all my kids into the van, and we made the 1 1/2 hour ride down to my mom's house for the reception. I thought it would help if I let my oldest daughter drive... it didn't! I visited with my sister whom I haven't seen in two and a half years. We laughed and had a wonderful time. After the reception, it was early enough that we could all go swimming. We ended up hours in the jacuzzi, and I just couldn't bear to tear myself away from the fun. Finally, it was late. My daughter was staying the night, so I ended up driving home myself, in the dark.

I thought I was taking it easy on Saturday -- just a little trip out to the grocery store for much needed food. The evening came, and I had to make a decision: do I go to see fireworks with my husband and kids, or do I get an early night and make it to church the next day? I chose to stay home.

Yesterday, I woke up, and there was just no way I could make it to church. I was aching all over, I was weak, I was emotional. Everything cried, "No way!" My husband took one look at me and suggested I stay home. "But I stayed home from fireworks so I could go!" I said. He told me, "Honey, it doesn't really work that way."

Oh, my wise man. I've learned that everything has its price when you have chronic fatigue. I thought I had the "system" down. I thought I could have my own "cap and trade" program and get away with it. I discovered two great flaws with that. First, I don't know the true cost of an activity until the aftermath actually hits me. Second, I follow my heart and jump into activities that end up really, really expensive.

Is it possible to really listen to your body? I'm still riding the roller coaster, and that can't help my recovery. I'm doing a lot of great things that I think can really make a difference to my health. But I'm always guessing at my limitations, and I am not getting it right. I sabotage myself, I think.

I know why. I hate the thought of life passing by without being able to live it. I know some things only happen once, and then they are gone. I don't want to regret this giant part of my life, especially if it drags on and on and on. I want to steal a slice of normalcy, even though this disease has decided it isn't supposed to be mine.

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.

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 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 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.

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.

Discovering My Strengths

I went to Via Survey and took a quiz to determine my signature character strengths. It was pretty interesting, and in some ways surprising! All the character strengths listed seemed to be uniquely geared towards helping me in my struggle with chronic fatigue.

Not surprisingly, my top strength was Spirituality, sense of purpose, and faith. Hands down, my faith is what I lean on most during this trial. It gives me patience and comfort and insight. It helps me to see this as a journey of learning and discovery, not as an unfair punishment to be borne. It allows me to find reasons for gratitude in unusual places.

My second strength surprised me and brought tears to my eyes. It was Bravery and valor. "You are a courageous person who does not shrink from threat, challenge, difficulty, or pain." Wow. All right, bring it on, and I will find a way to overcome. It's amazing how someone who didn't know they were brave can suddenly feel brave when someone points out how brave they really are. Does that make sense?

My third strength is Honesty, authenticity, and genuineness. "You are an honest person, not only by speaking the truth but by living your life in a genuine and authentic way." It's true. I put it out there. This is what it is, these are my limitations. I'm sure that has to help in some way.

My fourth strength is Capacity to love and be loved. I can't imagine living with and healing from this disease without the love and support of my family and friends.

My fifth strength is Forgiveness and mercy. Hmm. As you can tell from previous posts, I'm a little harsh on myself. Maybe I can take that character trait and turn it inward as well as outward. I can forgive myself of these imposed shortcomings.

Which brings me back to strength number one -- because it takes faith to forgive, and then to find peace.

Isn't it amazing that when God gives you trials, He also gives you everything you need to overcome?