This was a tough Christmas for me! I tried to pace myself through the holidays, but it didn't seem to work. Then, I tried to push through the holidays, and that didn't seem to work any better! I'm not sure what lessons I learned. I don't know what I would do differently, and yet this didn't work out very well. That encapsulates my feelings about this whole CFS thing. If I'm going to live with this, then something has to change. I just don't know what or how.
Let's call it the year of learning about Christmas. Let's call it trial and error and error and error. Let's promise ourselves that next year will be better ... and we'll keep this post in cyberspace for reference to make sure that happens.
In review: Parade -- not necessary, certainly not worth it. It lasted way too long and my kids only enjoyed the floats that were throwing candy. Selfishness at the beginning of Christmas is not the way to start out.
Decorating -- worth it. Especially when I let the kids take over. For the first time, I didn't fuss too much over where the snow village would be or where to make our little Santa's village. And the kids easily did as well as I would have.
Church Christmas party -- worth it! It was short and simple and delicious with a true Christmas spirit about it.
Kids' Christmas choir concert -- I think I'll let Rom do this one next time. The girls did a great job, but the choir director is crazy! It was way too long -- over an hour and a half -- and it was on backless benches. It killed me.
Cookies -- all right. This is a tough one! This tradition is beloved by everyone who gets our fabulous Christmas cookies. My family loves the look on their faces when we show up at the door. The only problem? I was the little red hen this year -- "Who wants to help bake the cookies?" "Not I" said the children in unison. I did too much of the work. Next year, I can start in November and freeze cookies, and I can give the children better assignments. I don't want to have to sit out the fun part of delivering next time because I'm too wiped out.
Tree -- I threatened to buy a fake tree next year. This was very disappointing to me. I need to find a way to start the outing off on the right foot. If I can't do that, Rom and I will get it ourselves next year.
Children's Christmas program -- worth it! But only if it isn't sandwiched between other activities. Then I'll have to let Rom handle it.
Nightly Christmas stories -- worth it, but we may need to expand our selection. The kids are getting bored with the same ones every year.
Caroling -- this was a new one. It's not a tradition, so it can go, if I'm not up to it. I love the smiles on people's faces, though, when we show up. We'll see.
And through it all, I need to focus on the simple symbols of Christmas that bring joy to my heart and remind me what this is all about. I lost that this year, and I don't want it to happen again.
My husband and I just celebrated our 20th wedding anniversary! We didn't go overboard -- I worked at the store to give him a day off, he bought me See's candies, we went out to dinner. I find it less and less necessary for us to produce these big showy displays of declaring our love. And, last night, it became very clear to me why.
He is my hero every day. I really think he has super powers. He shields me from the piercing bullets my kids shoot me. He can dissipate frustration and induce calm with a single hug. He can read my mind and anticipate my every desire. With a single decree, he can change the world (you know, within our household).
He has spent 20 years spoiling me and supporting me and cheering me and encouraging me and making me very, very happy. I think about who I was when I came into this marriage. I didn't even know who I was. He didn't try to create me or mold me into the person he wanted me to be. Instead, he let me become who I wanted to be -- and when I thought that person was out of my reach, he opened my eyes and showed me I was capable of much more than I ever thought possible.
We are still madly, passionately in love! Here's to the next 20 years ... and the next!
Binging: This was the great cookie week-end. When we first moved here 5 1/2 years ago, I started a tradition in our neighborhood. I baked a bazillion cookies and our family delivered them to each home on the street, complete with antler ears and caroling. We did it the first week-end of December to kick off the Christmas season. Our neighbors loved it, and I have continued it year after year. This year, we postponed our cookies until the second week-end, and a few of our neighbors were getting nervous. You see? This is a tradition that we can't let go of.
So, I started Friday evening and continued literally all day Saturday. I baked and baked and baked and obviously overdid it. We have added a couple of dear friends from church, and so the total number of cookie plates I finished was 25. In addition to a few leftover dozens for my own family.
Purging: Sunday, I crashed. I went to church because my daughter was speaking. I left right after she had finished. As I was leaving, tears started welling up. By the time I got to the car, they were streaming down my face. When I arrived home, I was in full force, sobbing uncontrollably for no reason I could put my finger on.
So, I decided to write. Just grabbed a pen and paper and let it flow out of me. Initially, it was meaningless, surface stuff. Then I hit something hard. I connected my invisible CFS to hiding abuse when I was a child. I feel now like I did then -- this seems so HUGE and obvious to me; why can't anyone else see it and do something about it? Why aren't they reaching out to me with tenderness and concern and healing instead of annoyance and continual demands? The worst part? I've told them that I'm sick, but they don't seem to believe me. And I was connecting that to the abuse -- it seemed to reaffirm that even if I had told someone, they wouldn't have believed me anyway.
Finding support: I didn't say anything when the rest of my family came home from church. I let them go out delivering cookies and caroling without me. When my kids asked why I wasn't coming, I told them I wasn't feeling well. I could almost feel the eye rolling -- but I held my ground. I knew I wasn't up to it, so I didn't go.
That night, before bed, I asked my husband to read what I had written. He was visibly moved. He said he was glad I had written, because he had been feeling some of the same things from the kids (the older ones, at least). He has been downplaying my CFS in front of the kids because he hasn't wanted to worry them or freak them out, especially my young boys. He had been thinking that something needed to change, and my writing has solidified that feeling. He said that we're going to need to have a special family council where we explain this disease very clearly to all the children. We're then going to set up a plan where the kids will necessarily take over most of the household responsibilities.
I once asked "What if I never get better?" That thought was terrifying to me, because the idea of going on the way I have been was horrifying. I knew that something would have to change, but I also knew you can't change other people. I certainly didn't have the energy to force changes on my family. My husband, however, has not only the energy but the authority to require my children to change. If he demands it of them, they will respond. I will still need to enforce consequences, but where he leads, we will go.
I am so hopeful! For the first time, I do not feel alone in this. I feel like I am being given permission to heal -- and I don't mean that I'll miraculously recover completely and never have CFS again. I mean that I can pace myself and say no even to church and family and rest when I need to and let myself recover when I crash.
My husband and I celebrated our 20th anniversary on Wednesday. This is the best gift he has ever given me in these wonderful 20 years. This, I can live with.
I'm working at the store tomorrow. So, I'm having a discussion with my 15 year old son and my husband. Actually, it's more like two simultaneous discussions. I'm going over my son's schedule -- he has no water practice tomorrow, but he's staying after school to lift weights on Thursday. I tell them my daughter has work tomorrow, so my husband will have to pick up my son from school. They start needling me, telling me tomorrow isn't Thursday. They think I'm having a CFS brain freeze and I've got the days all mixed up. What the...? I finally clarify for them that my son needs to be picked up from school Wednesday AND Thursday, but I'll be the one taking care of Thursday. The light bulb goes off, and they finally understand.
My son says, "What if it's been us all along?"
HA!
Sunlight
Through the window
Bright
And brightening
Making skies blue and bluer
And trees green and greener
But I can not feel its warmth.
Its light can not touch my face
Or even cast a shadow
Behind me
Because I am behind the wall
Looking through the window.
I love finding just the right gift for the people I love!
I hate fighting the increasingly rude crowds for the best holiday deals.
I love all the lights and decorations!
I hate the energy it takes to put them all up and take them all down. I also hate the feeling that I need my house CLEAN so I can enjoy the decorations.
I love all the Christmas goodies! I even love baking cookies for the whole neighborhood.
I hate taking on the task solo. It looms large before I get to it, and I have too much anticipatory fear.
I love our church Christmas party and the kids cute Christmas programs!
For about the first 15 minutes.
I love Christmas music! I love discovering new and unusual songs and artists.
Nothing to hate here!
I love spending time with my extended family! It is so cute to watch the cousins get together -- it's like a cross between best friends and siblings, only better.
I hate fading half way through the fun and feeling wiped out days later.
I love reading our favorite Christmas stories!
I hate it when the kids are goofy and annoying right as I'm starting to get weepy.
I love inward, spiritual thoughts and quiet times to reflect. I love reminders of my blessings. I love feeling I have an abundant life. I love moments of joy.
I was feeling so hopeful since I started seeing my chiropractor. I was finally starting to feel better. I had fewer headaches, I was more relaxed, I was getting more restful sleep. I found myself with extra energy during the day. A barely acknowledged thought kept raising its head in the back of my mind, "Can this be it? Am I going to get better?"
Ah, but the holidays. The sneaky little holidays! Thanksgiving alone has sent me back to square one. There is no end in sight until January 1st. I know how to pace. I know how to take care of myself. But, between now and the end of the year, there are so many things that I HAVE to do. OK, I don't have to, nor do I want to, but I will. I will go to a Christmas party here and a school performance there. I will bake cookies and take them to neighbors. We will visit Santa. We will drive around looking at lights. I will do all those things that make the holidays special to me and my family. And sometimes, I will find myself enjoying the occasion and feel grateful I did this. But I will be putting healing on hold for a little while.
Meanwhile, I started Immunocal. Either it will work, or it won't -- I'm not anticipating any placebo effect, because I don't really believe that whey protein is the magic bullet that will make this go away. Prove me wrong, please prove me wrong! Dang, it tastes nasty, too.
Good things that happened yesterday:
1. We put a Christmas tree up at the store because my son was willing to help me do the hard part.
2. My living room got cleaned because the kids wanted to decorate.
3. We decorated for Christmas because everyone was happy to help.
4. I finished my book because I recognized I was wiped out and needed to chill.
5. I lasted a little longer in spite of the extra effort today because I'm starting to feel better again!
Good things that happened to me yesterday:
1. I got some great deals on Christmas presents because I know which stores still have good stuff after 10:00 am on Black Friday.
2. I bought some fluffy new spa towels for myself because they were a great deal and I deserve them!
3. I cleaned my living room because I am eager to start decorating for Christmas, and I amazingly still had a little energy left after shopping!
4. I didn't have to cook because we still had abundant Thanksgiving leftovers.
5. I had a good conversation with my teenagers because my husband and I weren't afraid to confront issues head on.
6. I enjoyed my husband last night because we allowed ourselves to be spontaneous.
Good things that happened today:
1. I had a good yoga workout because I knew I needed a head start staving off the feast calories.
2. I finished cooking right on time because I planned it properly.
3. We had dinner at my mom's house, because she is generous and loves tradition.
4. I enjoyed watching the kids play together because cousins love each other so much.
5. I had a small piece of both cheesecake and pumpkin pie because I didn't overeat during dinner.
6. We listened to great music from my favorite radio station that we can only get when we're in San Diego because we were lucky!
7. I had great conversation with my husband during the trip there and back because he's so easy to talk to.
8. I had a good conversation with my sister because I initiated the phone call.
Today I am taking a break from CFS and just enjoying the beauty of my life! I invite you to do the same -- let go of your worries (because I know you have them, and I know they are significant), and let yourself find joy in the moment.
http://thejoymovie.com/
Good things that happened today:
1. I noticed how beautiful the air smelled so fresh after the rain this morning because I was up early today.
2. I made two killer sales at the store today because I was happy and upbeat.
3. I enjoyed my son's birthday dinner with our whole family because they are such good kids, even in a sit down restaurant.
4. I got to snuggle with my husband this evening because I was being nice to him!
5. I get to go to bed and read a couple of extra minutes because I can sleep in tomorrow!
Good things that happened today:
1. I had a good yoga day because I was willing to push myself just a little.
2. I started the day with happy tears because I remembered my daily devotional.
3. I got back on track and had a good massage because I was willing to make time for me.
4. I finished two more loads of laundry because towels are easy to fold.
5. I bought myself some flowers because I like to have beauty in my home.
6. I'm going to bed right now because I'm listening to my body tell me I'm done!
Thanksgiving is a wonderful time to reflect on the things that make you happy. With CFS, it is so easy to see the cup as half empty, or even almost completely empty, when in reality "my cup runneth over."
So, for this week, I am going to focus on the positive. I'm not just listing things I'm thankful for, but I'm going to mention the good things that happen and why they happened. Maybe this is a good time to start a gratitude journal, too, to keep my perspective moving in a more joyful direction.
1. I was able to sleep in this morning because my husband made sure no one bothered me.
2. I finished two loads of laundry because I tackled the task before I became side tracked by "fun things."
3. I read an inspiring article about learning from your trials because I took the time for my daily devotional this morning.
4. I splurged on See's chocolates today because I allowed myself to believe I deserve it!
5. I made a delicious chicken dinner tonight because it was super easy to do and I already had the ingredients on hand.
And right now,
6. I'm going to watch "Willie Wonka" with my boys, because they asked me and I'm actually going to move away from the computer and spend time with them!
Oh, I feel like I've been doing so well lately! My myofacial massage sessions have been really good, I've been digging out a lot of toxic emotions, and my energy has finally been inching up. I know externally you couldn't see a lot of progress, but internally, I knew I was feeling better.
Then, boom -- week-end whammy! I was hit with a nasty migraine that never abated no matter how much medication I took. I had a couple of obligations that I had to attend to, regardless of how I felt. I overdid it, of course, on Saturday. Sunday, the migraine was still there. I had a lesson to teach at church, so I couldn't stay in bed and sleep it off. I was wiped out after church, and I ended up having an argument with my husband that evening as well.
So, today is a designated recuperative day. I'm taking it a little easy. It helps that my kids are out of school this week, so I didn't have a lot of driving around to do. I slept in later than usual, and my husband made sure no one disturbed me at all this morning. I said "no" when my children asked if "(fill in the blank with friend's name)" could come over to play and spend the night. I bought some See's chocolates, and I've been reading a little today. My kids, eager to enjoy their vacation, got to work on their chores early today, so by the time I woke up, the house was pretty clean. Hm, relatively little arguing and fighting today from the kids, as well.
Nice! So, maybe I'll be able to make up those backward steps in no time at all.
For the last couple of days, I've been wondering -- how do you fight an illness that nobody believes is real? Sometimes, it feels like I'm just being humored. They'll play along with my delusion for awhile, but then they seem to lose patience. Like, when my disease gets in the way of what they would like me to do. I can feel their eyes rolling. But if I ask about it, I get, "No, no, we believe you!"
I would like to pace myself. I would like to determine what I will and will not do. I would like to have rest periods that are respected. I would like to decide what is important to me. I would like to follow the path that I believe will lead to healing. I would like to do it on my own time schedule.
It would be a lot easier if there were people in my life who lifted the burden and filled in the blanks instead of waiting for me to get around to it. It takes a lot of energy to defy people you care about, even at my ripe old age. Sometimes, it's enough to make me doubt myself again. Am I crazy?
Do they have to believe, or is it enough that they love me?
Um, yeah -- well, after the doctor, I felt so good I went shopping, not just to Henry's for groceries, but to Target for household supplies. Then, I stopped by our store to see my husband. Then, I got a car wash. And filled up. So, by the time all the kids got home from school, I crashed!
Silly me!
I went to my chiropractor/holistic practitioner/sports medicine practitioner again today. Another slight adjustment (still creeps me out!) and a fantastic myofacial massage! I just feel so good after that! It hurts like crazy, though -- especially when she does what she calls her "elbow work" (yes, it's just what it sounds like. She digs her elbow into my back along my spine. OUCH!). She is able to go deeper now, and I am tolerating it a lot better. Then, my reward -- I get endorphins! Lots and lots of fabulous endorphins! I leave with this aura of peace and serenity. It feels so good! I went to the store right afterwards, and a nice young man smiled at me. Not only did I notice, but I smiled back! The sun is shining, the sky is bright blue, it is a beautiful day, and I bought chocolate! I am going to relax and enjoy this for awhile.
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.
So, I started therapy with a chiropractor/holistic healer/sports therapist. She gave me an adjustment and a deep muscle massage. She said, "Our bodies reflect our truth." Whatever burdens we are carrying, it is all there, reflected in our bodies. I had a particular hard time with my left side, which, she tells me, is the emotional side of the body. Apparently, that means I have some unresolved emotional issues that she sent me home to confront.
Which brings me to the question I have been unable/unwilling to ask these last couple years since I suspected I had CFS.
I know it is chronic fatigue syndrome. I know that there is no cure. I know that many people suffer from it for many, many years. But I've never actually asked the question, "What if?"
What if I never get better?
Yes, the most exciting thing happened at our house -- I finally made Shandee's Famous Overnight Bubble Bread for breakfast! There were excited giggles as I came downstairs and put it in the oven. Several times, the kids turned on the oven light to peek at the progress. The worst torture was after the bread was finished, but it still had to cool. Finally, the moment arrived! Everyone was able to have not one, but two pieces each! Happy satisfaction abounded as a hushed quiet fell over six eating children. The verdict? Six thumbs up, I believe! It was so easy to do, I may just have to make this our Christmas morning tradition.
Now, my gift to all of you readers -- I've included the recipe on my recipe blog, The Flagging Chef (see sidebar)! Enjoy!
Sometimes, it's so easy to see everything you are missing when you have CFS. So, in a rare moment of quiet contemplation, I came up with a few blessings I have now specifically because of CFS.
1. A clean slate. It is exactly the fact that I can't keep up with my old activities that I get to start over. Before CFS, was I doing things because I loved doing them? Because I "had" to? Because it was expected of me? Because it was habit? Because it was an escape? Now, my functional time is precious, and I have much more stringent requirements before an activity even makes the list! I am choosing to remake me.
2. Permission to say "no." There is no pressure to agree to do something that I'm asked to do. I have to be honest with myself. If it is not physically plausible, or if it crowds out something of greater value, I get to say "no!"
3. Less doing, more becoming. I like the word "becoming." It has no beginning, no end -- it's a process. With so many activities stripped away, I'm left so often alone with myself. Am I happy with what I see? What do I embrace? What do I want to change?
4. Discovering hidden strengths. Faith, strength, patience, courage. Some I knew I had; others have been a surprise. This is an amazing opportunity not only to recognize but to use those strengths.
5. Relying on others. To someone who is proud and independent, this does not immediately seem a blessing! But to be on the receiving end of love and service is something that stays in your heart and is treasured forever.
6. Relying on the Lord. My strengths pale in face of this enormous challenge. I am all too aware of my weaknesses and failures. I can see the hand of the Lord comforting me, strengthening me, and making it up to the people I love when I can't be everything for them.
I'm ready to start my all-inclusive wellness plan. That means that I need to put together a menu of healthy, really easy to prepare meals. Here's where I'm stuck! I've been throwing together frozen and prepared meals for so long, I don't have any good dinner recipes! Does anyone have any family favorites that are easy to prepare and good for you? I'm looking for chicken and fish and beans and lots of vegetables. I love to experiment, so unusual dishes are welcome.
Either post them here as a comment, or submit them on my website "Chronic Fatigue Community." Then, I'll post them all on my recipe blog, "The Flagging Chef." Thanks for helping!!!
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?
Rom bumped into a chiropractor at the store the other day. She had had (yes, past tense!) chronic fatigue syndrome and fibromyalgia. She said that she overcame it using a supplement called Immunocal from Immunotec.
Now, I am extremely skeptical. It looks like it's just a protein supplement, and it's very expensive. But she swears, swears, swears that it made her better. She also said that the improvement was nearly immediate -- within a couple of weeks. So, on her recommendation, I'm going to order ONCE -- give it a try -- and see what happens. If it works, I'll be dancing in the streets! If it doesn't -- well, I won't have to keep using it for months to see if it finally kicks in.
In the meantime, I'm going to be adding all the positive lifestyle changes that will support healing -- pacing, good diet, graded exercise, good sleep, stress reductions. Even if it isn't the miracle for me it was for her, I'll still be in a healthier, happier place.
Wish me luck!
Maybe, or maybe not! This is not a pity party. I just want to tell the story and have it here to compare next year.
This year, I did not put up one single Halloween decoration! No Frankenstein, bats, cats, or haunted houses. This year, we did not go to a pumpkin patch and spend an evening drinking apple cider and choosing the perfect pumpkin. This year, we did not even buy pumpkins at the local supermarket! We did not ... carve pumpkins.
Am I the worst mom ever? I have to tell you, I am steeped in tradition. I love those childhood memories of pumpkin patches and carving parties. I admit to a twinge of guilt that I did not give my children that this year.
However -- what did we do? We went to the trunk-or-treat and chili cook-off at church on Tuesday. We went to the school's Family Fall Festival on Thursday. Rom took the kids out trick-or-treating last night, including a trip to the park where they had a mini-carnival going on. Meanwhile, I dressed up as an angel and sat in a chair on my porch handing out candy and really enjoying the kids and the costumes.
And now, I don't have any Halloween hangover to clean up!
Maybe next year, I'll be better. Maybe next year, I'll have a lot more "good" days. Maybe next year, we'll get to the decorations and pumpkins. But this year, in spite of my limitations, was a pretty good year!
OK -- I've had a rough week, and boy did my house show it! It was looking definitely worse for the wear. Tuesday, I had my children stay home from school to protest the CTA donating $1.2 million to the no on prop 8 campaign. I thought it would be a great time to rally them together to catch up on their chores.
I then went to Albertson's "going out of business" sale and to Wal-Mart to pick up Halloween costumes. Ooops! Did me in! I was an exhausted zombie after that.
I asked my oldest daughter (she's 17) to spearhead the "Home Blessing Hour" (thank you FlyLady). Nothing. I asked again. Nothing. A third time? Nothing. Finally, I said, "OK, guys, just get your own jobs done today." Nothing.
My poor husband comes home and it looks like a bomb had gone off. Bags of groceries from Albertson's were still scattered all over the living room floor. Every room in the house was a mess. Did he say anything about the mess? No -- but he definitely gave the kids an earful about how they had treated me when I was feeling so terrible.
Yesterday (Wednesday), I covered at the store for my husband to give him a day off. It was a lovely, slow day. It paced itself -- only three customers all day, well spaced breaks in between, few tasks that needed attention. I was really proud that I was able to make it through the day.
When I got home, if you know my husband, you can already guess what I found -- A clean home!!! Yes, the living room was clean AND vacuumed, the kitchen was clean, the loft was clean AND vacuumed -- even the bathrooms smelled better! And his very own special gift to me -- he cleaned out the pantry to make room for all that food I had just bought at Albertson's.
I know it was a labor of love. I also recognized what a blessing it is too have two parents in a family! So often, I feel like I am failing my children. I know that they needed a parent who was strong enough to insist they get their work done. I couldn't do it all week. But when Dad's big booming voice let them know this was not a debate and there would be no room for procrastination, they jumped up and got to work. More than I needed my house clean, my kids needed a parent to be strict and expect more from them.
For the past 15 1/2 years, my husband has worked his tail off so I could be a stay at home mom. That blessing is even more important to me now, while I have CFS. I know I have bad days. I know there are days when I can't be a "good" mom. But, I'm here. At least I can be a mom.
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.
Sometimes, with chronic fatigue, you have a tendency to dwell on the negative. As you become less capable and less active, it's natural to mourn the loss of activities you once loved. It is easy to get bogged down in self-pity, and it can easily blind you to the hidden blessings that also come with this disease.
One of the hidden blessings I've discovered is that chronic fatigue forces you to simplify your life. You are simply physically unable to keep up the frantic pace you most likely followed prior to getting sick! You then find yourself taking stock of what is most important to you. It is often surprising to discover just how far back in your priorities these important things had fallen. When you discover "I can't" then all the "have-to's" simply disappear. You are then left with the joy of crafting your life around what is really important to you.
Two books that I find inspiring and helpful are Walden, by Henry David Thoreau, and The Diving Bell and the Butterfly, by Jean-Dominique Bauby. In Walden, Thoreau purposely eliminates everything superfluous from his life and lives in the simplest fashion in a small home he built on Walden Pond. It is interesting to me that he chose the life that I am forced into! His observations are amazing, and it makes me think about my own life and if I am learning such profound lessons from my experience.
The Diving Bell and the Butterfly is the story of a driven, successful man who has a stroke that results in locked-in syndrome -- he is completely paralyzed and cannot communicate by any way other than blinking is eye. In many ways it is a tragedy. In fact, in my book club, most of the women were unable to see past the horrible coffin this man lived in -- the "diving bell". However, what was beautiful to me were the "butterflies" in the story. It left me with the question: when your entire life is stripped away from you, and all that is left is a confrontation with you, how will you respond? To a far less extreme, that is the question that we with chronic fatigue face. This book inspires me to find the butterflies in my own current circumstances.
These are two excellent books, and I recommend them highly to anyone who wants to appreciate life more!
It all started while I was reading a book on marketing and advertising. I shared a few quotes with my husband, and then I had a brilliant idea for an ad phrase we could use. Simple, straightforward, to the point. His eyebrow raised a little and he said, "Wow, that was a really lucid thought."
It didn't stop there. I went to church and in Sunday School class, I was asked to be the scribe for an activity we were doing. As people tossed around suggestions, I wrote them down. I then presented our ideas to the class. I kind of reworked the suggestions in such a way that revealed the point behind them. When I sat down, my husband leaned over to me and said, "Wow, that was really good. You did a remarkable job."
I like to participate in class discussions, because I know how much better the lessons are when people share their thoughts. It's easier on the teacher. So, during class, I looked for times I could make comments, and I shared a few of my thoughts.
Later in the day, at home, I was giving the lesson for Family Home Evening. Again, I was able to stay focused on what I was trying to teach, and we had a rather sophisticated gospel discussion as a family -- amazing with six kids ranging from six to 17 with limited attention spans. My husband said, "Kids, I just wanted to point out what a lucid day your Mom is having today! She has really been coming up with some good ideas."
Finally, we went to bed and had an hour's worth of discussion together. We talked about the business, the church lessons, our kids. My husband said, "Wow, look at us, we're having a discussion!"
Ah, a lucid day!
I ran out of melatonin a couple of days ago, so I decided to try traditional sleep medicine instead. I chose some generic brand liquid gels. Well, it didn't help me get to sleep at all; my mind was racing with business stuff, and it took awhile to finally fall asleep.
I think I slept soundly, pretty much, but oh my gosh -- waking up was brutal!!! I couldn't do it! I try to get 8-10 hours of good sleep a night; more than that, and I never quite shake off the sleepiness. I finally dragged myself out of bed at 10:00 am, after a good 12 hours of sleep. I could barely make my bed. I know I did yoga, but I don't think I finished it all. I can't remember doing the final back stretches and corpse pose. Did I stop in the middle? Did I get distracted? I just don't know.
Bad medicine! Bad! You are heretofore banished from my home. I'm going shopping for more melatonin today.
Oft times, when you have CFS, the littlest accomplishments take the biggest efforts to achieve. Inside, you're cheering yourself and feeling proud. Outside, you're a little embarrassed to be making such a big deal out of such a little thing.
Once in awhile, someone dear to you notices your accomplishments and the effort that went into them. Today is my "recuperation" day. I've been overdoing it all week, so I was going to stay in, maybe do a little laundry, and work and play on the computer. Well, Rom had loaded the empty 5-gallon water bottles in the truck and was hoping I would make the trip out to fill them up. I dashed his hopes and told him I wasn't up to it today.
However, when I went to pick the boys up from school, I was feeling pretty good. I took the boys with me and we filled up the water bottles. We then went to surprise Rom at work. We stayed for a little while, and Rom got a kick out of seeing us.
When I returned home, there was a message for me from Rom on the answering machine. He said he was so happy to see us today; it really lifted his spirits and broke up a boring day. Then, he thanked me very sweetly for filling the water bottles, knowing I wasn't feeling well today. I loved that he noticed it was an accomplishment for me. I felt loved, appreciated, and supported. I am glad I married such a good man!
Someone once said that calling this illness (disease? condition? ailment?) chronic fatigue is like calling Parkinson's "chronic shakiness syndrome." Really, the name is embarrassing. People just don't get it. When they hear that moniker, they think, "Ok, well then just go take a nap!" Ah, if it were only that easy!
So, I'm here to chronicle life with chronic fatigue.
What is CFS?
CFS is the elephant graveyard for all diseases that the doctor can't quite put his finger on -- the ethereal, undiagnosable, strange diseases that in the past were labeled non-existent. So, now instead of "You're crazy," we have CFS.
What does CFS look like?
Fat - I weigh more than I did after my 6th child.
Flabby - I've lost muscle. Like Schwarzenegger without a shirt. (Have you seen him lately?)
Old - I've aged 10 years in the last two.
Lazy - My house is a disaster.
Flighty - I am so forgetful! I even get disoriented driving to the store sometimes.
Flaky - Ok, sometimes I just can't do that, even if I promised or I really, really should.
Turret's - When people see my signature twitching, they tense up, expecting me to start swearing a blue streak.
Beaten up - The permanent dark circles under my eyes make me look like I married a wife beater.
Beaten down - I slouch, even worse than when I was 15.
What does CFS feel like?
Think Christmas morning, 6 am, after staying up "playing Santa" until 3 am. That's on a good day. Then, it gets progressively worse, day after day, until "the crash." All functionality flies out the window until I am able to recuperate back to just feeling deathly tired. Mornings are the worst. Opening my eyes feels like peeling off band-aids. You know that feeling you have after a good night's rest, when the baby has slept through the night, and no one climbed into bed with you, and you wake up all by yourself without the help of the alarm, and you feel so good and refreshed? I haven't felt that in two years. Add to that regular headaches (minor to moderate) and a debilitating migraine every month or two. Also throw in some daily aches and pains and little annoying illnesses like sore throats, sniffles, a cold, and the flu.
What does CFS sound like?
"Um, we think it may be perimenopause... hormones... too much/little progesterone/estrogen/testosterone (what?!)... hypo/hyperthyroidism... anemia... nutritional deficiency... migraines (ok, yes, but only as a symptom, not as a diagnosis)... depression... inactive/overactive adrenal glands... MS... seizures (Ok, you know it's bad when you're disappointed it's not a brain tumor -- at least they could cut the stupid thing out and I could GET BETTER!!!)... blepharospasm... hypoglycemia... sleep apnea..."
What helps?
Yoga. Arbonne. Lowering expectations. Knowing my limits. Pacing myself. Priesthood blessings from my husband. Being aware of how much I'm still contributing.
What doesn't?
Trying to play catch up. Comparing myself to "superwomen," including who I used to be. Over-committing. Setting my expectations too high. Praying to make this go away. Trying to make everyone happy. Yo-yo dieting... BUT I STILL DO IT!
Chronic fatigue and chronic fatigue syndrome are often used interchangeably, but they are actually two very separate things. Most of us have experienced fatigue as a symptom of illnesses such as the flu, pneumonia, or a severe cold. It can also sneak up on us through extreme stress, poor nutrition, or lack of sleep (remember those "just had a baby" days?).
Chronic fatigue is that kind of unrelenting fatigue that persists for more than six months. It is a symptom of other diseases such as infections, lupus, multiple sclerosis, thyroid disease, depression, fibromyalgia, anemia, or sleep apnea. If you cure the disease, the fatigue goes away. If the disease is chronic, then chronic fatigue can be treated but not cured.
Chronic fatigue syndrome (CFS) is an actual disease recognized by the Center for Disease Control. It is a neurological and autoimmune disease. The main characteristic of CFS is severe, disabling physical and mental fatigue that gets worse with even minimal exertion. In addition to fatigue, people with CFS also exhibit at least four of the following symptoms:
The kids went back to school last week, and I had the whole house just to myself for six hours every day for the first time in 17 years. Pretty amazing! So, I decided that I could probably tackle some projects. I decided my attention would first go to my own bedroom. I wanted to create a relaxing, calm environment for me to escape to and unwind.
I did it, and I was pretty excited about it! I blogged about it on my other blog, a little tongue-in-cheek (I mean, c'mon, people clean their rooms every day!), but I was celebrating my accomplishment.
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OK, I don't know if it's really a parable, per se -- a symbol, a microcosm maybe -- shoot, that's one of the things I hate about CFS, not being able to find the right word! Nuts!
So, as an update, I received my CBEST results yesterday. The CBEST has three parts, reading, math, and writing. Each section is worth up to 80 points, with a passing score of 41 per section. Overall, I had no problem passing. I took the test sections in the following order: reading, math, then writing. My scores were as follows: 76 in reading, 69 in math, and 53 in writing. Now you can see CFS at work! I started off strong and slowly faded as the testing wore on. I had two writing prompts; my writing was getting pretty inane by the second one! I was happy to just get the thing finished. So, the moral of the story? Even though your performance wanes, you can still get it done and be successful! (That does make it a parable, then, doesn't it? Or is that a fable?)
OK, this is not a political post, or a moral post, or a religious post -- although I obviously have a political, moral, and religious opinion about California's Proposition 8. This is a CFS post!
Today, I walked precincts in support of Prop 8. Now, I can't tell you how concerned I was going into this! I know what happens to me when I overdo it, and this would certainly mean overdoing it! I've been busy all week getting ready for back to school. I've been up late every night with "Olympics Fever" (damn you, Michael Phelps!). I was out late last night with Kyara at a production of Les Miserables (it was a school assignment). It required me to get up early (OK, early for me -- 7:20 am).
But, this is something I strongly believe in. Not because I'm a redneck gay basher, but because I'm an advocate for the family. Study after study shows that children growing up in a traditional two parent family have the best chances for success, and that they make the most contributions to society. Although many families fall short of this ideal -- divorced parents, unmarried parents, widowed parents, and homosexual couples -- I still feel that the government has a stake and obligation in promoting traditional marriage. I honor and applaud every parent in every circumstance who does their best to raise happy, productive, healthy children. But, I'll do what I can to keep traditional marriage the ideal.
And today I walked precincts! We started at 8:30 am, and I walked until 10:00 am. People of all opinions were friendly and polite. It was surprisingly easy to do. Now comes the CFS part -- because of the ease, I found myself thinking I should take on a second route. There was that guilt in the back of my mind that I wasn't doing enough. I was tempted ... and I respected my personal boundaries! I said no to the second route! I compensated by taking home a calling list instead. Now, I'm home, and I feel the fatigue starting to set in. But if I take it easy today, I don't think I'll crash. If I had taken a second route, I would have crashed for sure.
Look at me! I'm doing something I want to do ... something that is important to me ... and I'm fitting it within my physical limitations! I would say this is definitely a milestone, and I'm feeling very proud!
I know that one of the worst things you can do when you have CFS is to compare yourself with others. Sometimes it's hard not to. I see my good friend, the mother of a big family, and she has the energy to do it all -- she's up an hour before her kids are, they read scriptures together, they say family prayers, her house is reasonably clean (did I say she has a big family?), she's thoughtful and always available to serve others, she opens her home to her kids' friends. It's easy to feel slight when I compare myself to her. I think, "Well, if I had the energy, I would be great, too!"
But, there's someone else I compare myself to that is even harder on me. That's when I compare myself to the old me. And to think I used to be so hard on myself! Right before CFS came crashing down on me, I was nearing Superwoman status. I loved my church calling -- I was the Primary President, in charge of the children's ministry and overseeing an organization of 60 kids. I loved all the aspects of the calling, and I did it well. I enjoyed the compliments and support I received from people who appreciated what I was doing for their kids. It was a great source of pride.
With my kids getting a little older, I was venturing out of the house and doing a little more for myself. I was making a little money for myself as a consultant with Home Interiors. I was getting quite good at my demonstrations and parties. After so many years of being immersed in children, it was so refreshing to be out among adults again.
I was dabbling in interests of my own. I was joining some of the small interest groups my church has to offer. I was going to a book club and a gardening club. I participated in cooking demonstrations. I tried a scrapbooking club (it only lasted one time, though).
My house was reasonably clean. I took pride that it was sometimes cluttered, but never dirty. It was never further than an hour of intense labor away from looking good and inviting again. I could entertain people, although I only did it once or twice. I even threw a gigantic surprise party for my husband's 40th birthday.
Speaking of birthday's, I was there for my kids. I could throw together fabulous birthday parties -- nothing extravagant, but certainly creative and fun. I was available when they needed to talk. I helped them with school work. I was always coming up with programs for discipline and cleaning and leisure time, and I stuck to them. I read bedtime stories to my boys.
I took care of myself. I planned menus and cooked healthy meals. Not everyday, of course, but often. I exercised regularly. I looked good! I was in great shape for a mother of six at my age ... and I was moving towards being in great shape, period. I felt good.
Little by little, I saw all of that stripped away from me. It was crushing when I reached rock bottom. At the bottom of the crash, I was nothing more than a zombie. Getting up before noon was my most major accomplishment. I forced myself to do the bare minimum, but I couldn't do anything else. My house became a disaster. I spent hours on the computer, oblivious to anything around me. I no longer spent time with my kids or my husband. We moved to easy, prepared meals. I stopped exercising. I couldn't get out of the house at night, so gone were the Home Interiors parties and my book club. I was released from my calling, and although I cried, I knew I couldn't do it anymore. I stopped going to my gardening club, because I couldn't keep up with even minor gardening tasks. My family was hurt and bewildered, trying to be supportive, but I felt their unintentional, never-spoken accusations. Still, I couldn't do anything about it. I know it sounds like depression, but it was not! I've been there before, I know what it feels like. It was just that I was too tired to do anything.
It hurts to remember the old me. It also hurts to remember the rock bottom me. I'm in the process of creating the new me, but it isn't easy. It still feels like I'm trying to run through quick sand. My greatest accomplishments are the tiniest victories ... but still, at least I'm starting to have victories.
I knew I would be pushing it Saturday... but it was worth it, right? I know I've reached my limit when I'm so tired I feel like I have to puke and I can't keep from crying. I remember one 4th of July when Kyara was about three years old. We had spent all day at the beach and then stayed for fireworks. When it was all over, we had to gather all our belongings -- towels, blankets, chairs, toys -- and make the trek back to our parked car. Poor Kyara was so exhausted, but our arms were full, so she had to walk! Of course, she cried the whole way there. My mom, a wonderful woman but not fond of crying as a grandmother, tried to get her to stop by telling her not to be a crybaby. I was so mad! I told her, "She's just a little girl, and she's exhausted past her limits! She's not a crybaby, she's doing just fine!"
Well, I'm not a little girl, but I sure feel like one! I am definitely exhausted beyond my limits, but I'm not doing just fine! And today is our last day to go to the beach this summer, so there's no rest today. Tomorrow, Kyara is scheduled to take her driver's license test in Riverside, so there's no rest tomorrow. I also have back to school looming and our new business to help with. I panic when I don't see any rest on the horizon. I'm going to have to go into survival mode for a little while, which no one likes, but I don't see a way around it. Take care of what absolutely has to be done, and float like a zombie around the house the rest of the time. Bed at 9:00 pm, no matter what Michael Phelps happens to be doing later than that. Withstand the whining, the demands, the eye-rolling, the accusations that I'm not doing enough. Forgive myself daily... hourly... minute by minute.
After a fitful night's sleep, the alarm woke me up at 6:15 am. I got up, showered, and headed out the door by 7 am. I hit the freeway towards Riverside and arrived at the high school a little before 8 am. There, I spent the next four hours taking the CBEST, the test you have to pass if you want to teach in California.
What was I thinking? OK, I knew what I was thinking when I signed up to take the test. I thought, Gavin is going to be in 1st grade this year. That means, for the first time in 17 years, I will not have any kids home with me all day long. I've thought this would be a good time to go back to work and help boost mine and Rom's retirement. A full-time job commitment doesn't seem like a good idea to me right now, but I thought substitute teaching would be doable. I could accept jobs on my own terms and be able to pitch in to help with the family income. So, I signed up for the CBEST.
Now, I also know what I was thinking last night. What, am I crazy? What if I have a complete brain malfunction? What if I fade half way through and can't finish the test? I didn't even study for this -- what, do I think I'm still 18 years old with English and Algebra just under my belt? What if they ask me to find the area of a triangle? Or the mean/median/mode of a group of numbers? What if they ask me to use laid/lay/lain properly in a sentence? What if I get a huge migraine during the test and can't find my way home and end up driving around in circles for hours on the freeway?
Well, I have to admit taking the test wasn't as easy as it used to be. I did have some strange brain functions. Once, I was numbering some items in order largest to smallest. For some reason, I wrote an 8 instead of a 3 next to one of them. This really threw me off when I went to record my answer, and I had to renumber everything. Then, I thought, "Oh, I see -- it's just like when I say 'refrigerator' when I mean 'dishwasher.'" I wonder how many more of those I did that I didn't catch?
So, now I'm paying the price -- I'm more exhausted than I've been in months. I've given up on accomplishing anything more today. I'm just counting the minutes until I can go to bed. But, you know what? I think I did OK. And, I think it's worth it. Sometimes, you know you're going to pay for it later, but you just have to go for it. I'm glad I did.
Today was a good day, and they don't come by very often or last very long, so I have to revel in it while I can! I started by getting up at 9:30 am. A respectable time to get up, I think. I made my bed, did my yoga, showered. I threw in a load of laundry (kind of -- it was just a comforter). I read my scriptures and said my prayers. I switched out the laundry and threw in another load (kind of -- another comforter). I checked my e-mail and played a crossword online. I joined Rom at work around noon and helped him move beds around. I came home and switched out the laundry and threw in another load one more time (kind of -- two blankets this time). I played on the computer in the afternoon, and I did a little running around in the evening. Now, at 9:30 pm, I'm starting to feel ready to get to bed, but I'm not even really twitching yet! Imagine, a full 12-hour day! Amazing! I hope I didn't overdo it at the store. I'm going to get to bed and hope for the best tomorrow!
Someone once said that calling this illness (disease? condition? ailment?) chronic fatigue is like calling Parkinson's "chronic shakiness syndrome." Really, the name is embarrassing. People just don't get it. When they hear that moniker, they think, "Ok, well then just go take a nap!" Ah, if it were only that easy!
So, I'm here to chronicle life with chronic fatigue. And, since I haven't told anyone about my blog yet, I can be pretty honest and get away with it.
What is CFS?
CFS is the elephant graveyard for all diseases that the doctor can't quite put his finger on -- the ethereal, undiagnosable, strange diseases that in the past were labeled non-existent. So, now instead of "You're crazy," we have CFS.
What does CFS look like?
Fat - I weigh more than I did after my 6th child.
Flabby - I've lost muscle. Like Schwarzenegger without a shirt. (Have you seen him lately?)
Old - I've aged 10 years in the last two.
Lazy - My house is a disaster.
Flighty - I am so forgetful! I even get disoriented driving to the store sometimes.
Flaky - Ok, sometimes I just can't do that, even if I promised or I really, really should.
Turret's - When people see my signature twitching, they tense up, expecting me to start swearing a blue streak.
Beaten up - The permanent dark circles under my eyes make me look like I married a wife beater.
Beaten down - I slouch, even worse than when I was 15.
What does CFS feel like?
Think Christmas morning, 6 am, after staying up "playing Santa" until 3 am. That's on a good day. Then, it gets progressively worse, day after day, until "the crash." All functionality flies out the window until I am able to recuperate back to just feeling deathly tired. Mornings are the worst. Opening my eyes feels like peeling off band-aids. You know that feeling you have after a good night's rest, when the baby has slept through the night, and no one climbed into bed with you, and you wake up all by yourself without the help of the alarm, and you feel so good and refreshed? I haven't felt that in two years. Add to that regular headaches (minor to moderate) and a debilitating migraine every month or two. Also throw in some daily aches and pains and little annoying illnesses like sore throats, sniffles, a cold, and the flu.
What does CFS sound like?
"Um, we think it may be perimenopause... hormones... too much/little progesterone/estrogen/testosterone (what?!)... hypo/hyperthyroidism... anemia... nutritional deficiency... migraines (ok, yes, but only as a symptom, not as a diagnosis)... depression... inactive/overactive adrenal glands... MS... seizures (Ok, you know it's bad when you're disappointed it's not a brain tumor -- at least they could cut the stupid thing out and I could GET BETTER!!!)... blepharospasm... hypoglycemia... sleep apnea..."
What helps?
Yoga. Arbonne. Lowering expectations. Knowing my limits. Pacing myself. Priesthood blessings from my husband. Being aware of how much I'm still contributing.
What doesn't?
Trying to play catch up. Comparing myself to "superwomen," including who I used to be. Over-committing. Setting my expectations too high. Praying to make this go away. Trying to make everyone happy. Yo-yo dieting... BUT I STILL DO IT!
