Cake Wrecks and Charitable Donations

The wonderful people at Cake Wrecks are giving away $200 a day for the next two weeks to charity. Plus, they are asking their readers to donate just $1 to the charity of the day as well. They are asking people to leave comments to suggest where they should give their donations. I've left a comment asking them to donate to the Whittemore Peterson Institute. I thought others might want to leave a comment, too. This is a wonderful opportunity to help people become aware of the great strides being made in CFS research and to hurry along the research that could ultimately lead to a cure.

http://cakewrecks.blogspot.com/2009/12/catchin-spirit.html

My Support Sytem: Are You In or Out?

You are not in my support system just because you love me.

I've noticed that the people who love me fall into three general categories. (I'm very left-brained. I categorize.)

First, there are the people who believe I am sick but think I'll get better. These are the ones who approach me with the worried furrowed brow, pat me on the shoulder, and ask with pity, "How are you doing today?"

Second, there are the people who believe my illness is psychological. They think that if they pretend nothing is wrong with me, I'll eventually catch on and agree with them. They are the falsely cheerful, "Hey! It's good to see you! I'm glad you're out doing something! You look great! ... ! ... !"

Third, there is the rare and amazing gem -- the person who understands. They believe I am sick with a real disease. They recognize that it is called "chronic" for a reason. They accept that it's not going away. They realize that I now have limitations and need to alter my activities and the way I live. They embrace my new normal and find a place within it.

These rare gems are my support system. My husband is my greatest and most reliable support. Because of him, it doesn't matter how small the rest of my support system is. Without him, I would certainly become depressed, go to bed, curl up in a ball, and stop living.

I don't want anyone to think I'm pointing the finger at them. If you're not in my support system, it is my fault. I've discovered I'm not very good at communicating this disease to other people. I've seen so many puzzled looks when I've tried!

So, if you want to join my support system -- follow my lead. If I am with you, it is because I am well enough to be there. Embrace the moment and enjoy it for what it is. Make me feel normal, like the same person you've always loved, but lower your expectations and be flexible. Notice if I seem to start to "fade," and make it easy for me to leave or take a rest without feeling awkward. Don't expect me to be too reciprocal. And don't forget me.

Being Thankful

Well, I haven't been blogging much lately. I'm afraid I've been in survivor mode lately, curled up in a figurative (and sometimes literal) fetal position. But I couldn't let Thanksgiving pass without a comment!

I love the fact that Thanksgiving comes before Christmas. Pondering the many things I'm grateful for puts me in the right frame of mind to enjoy the true spirit of Christmas. You may think that CFS has made it a little more difficult for me to be thankful, but it's really not true. If anything, it has made it easier.

CFS has given me many small blessings and one great gift. I have, throughout my life, had great burdens that I carry. Because of my faith, I do not fear death -- in fact, I have often yearned for it. I've thought how wonderful it would be to leave behind the pain and suffering of this life and return home to my Father and my Savior. At times, the only thing that has kept me here is the feeling of six pairs of small hands and one pair of large, gentle hands holding onto me like many balls and chains. Oh, I've wanted to go! But what would happen to them? I've begrudgingly stayed.

The onset of CFS has taken life away from me, little by little. And I've come to realize -- how could I have taken so much for granted? Every little morsel I can enjoy now is so sweet to me. There are a million tiny moments full of life that I never paid attention to before. A hug from my tween, a kiss on the top of my head from my big boy, cuddling on the couch with my husband, stepping outside to a warm, clear, star-filled night, waking up to blue skies and warmth, a thank you from my big girl at college, my boys climbing into bed with me, the little ways they all try to make life easier, better, happier for me.

I believe that this will someday be over. One day, I will no longer have CFS. I'll be able to engage more in life and her bountiful activities. I will be careful in what I choose to do with my precious energy. I will not waste it on things that do not bring me joy. I will not clutter my life with the unimportant. I will savor the moments. I will stay as long as God allows, and when He finally calls me home, I will leave this life with one last, fond glance over my shoulder at this beautiful adventure.

People's Health Blogger Awards

While visiting Sue's blog today, I noticed that she is up for a People's Health Blogger Award. I decided to vote for her, and I am putting a "Vote for Sue" widget on my sidebar. Sue's blog is one of the first I found when I discovered I had CFS and started blogging about it. I was so new and lacking in knowledge when it comes to this disease! Sue was always there to open my eyes and show me different paths to understanding just what was going on with me. It was from her that I learned about post-exertional malaise, orthostatic intolerance, and LDN. And she seemed a "success" story. Even though she still has CFS, she seems to manage it so well, and she still has a life! That is what I aspire to. So, in a way, I would say Sue has been my CFS mentor, and she has become a very understanding friend. I wish her the best of luck!

The Fear

I've thought about this ever since I watched Laurel's video on Treya's blog. One thing the stories about those severely affected by CFS seem to have in common is that they were moderate to begin with, but they pushed too hard and ended up in a severe crash they never came out of. I can't help but wonder -- is this the slippery slope I'm destined to head down as well?

For awhile, it seemed like my CFS had stabilized. I was functioning at about 50%. I knew what my limits were, and I largely stayed within them. Sure, I cheated once in awhile, but I rested up after and rebounded rather quickly. It made me feel like I was "getting better."

August pushed me way beyond my limits, and I fell to about 30%. I followed my recuperative routine. I added extra rests. I put further restrictions on my activities. I cut back on my nearly non-existent exercise. I learned and regularly practiced deep breathing and meditative exercises. And I haven't budged. Like Sue said in her blog today, I wonder if this is my new "normal."

It's funny how we grasp around, trying to convince ourselves that we have some control over this disease. I take a gazillion supplements without any evidence that a single one does any good. I pace, I rest, I modify my diet, I destress. I've become a ghost of who I used to be. And I tip-toe around thinking that if I don't disturb it, CFS will somehow leave me alone.

Well, I'm still a wife and still a mother of six and still co-owner of a struggling business. I am at the mercy of LIFE. Will the next blow be the one that does me in?

Hanging on to Dear Life

Do you remember that children's game, Crack the Whip? You all hold hands, and the leader runs around, pulling everyone along. It's quite fun, unless you're the one at the end of the line. I feel like life is playing Crack the Whip with me, and I'm just trying to hold on!

I did something crazy this year. I signed my two younger boys up for soccer. In my defense, I signed them up in May, when I was feeling relatively well and expected to be feeling better by September. I didn't realize I'd be having a downturn in August that wouldn't relent for quite some time.

So, now here we are -- my boys have soccer practice Monday, Tuesday, Wednesday, and Thursday afternoons. We have games on Saturday. Can I just tell you how much they love it? My youngest son had never played before. He was so nervous his first day of practice! By the end of the hour, his eyes were shining and he told me, "I love it!" He is ready for practice half an hour before we have to leave. He asks me, "Is it time to go yet?" every five minutes. My older son isn't as fond of practice (because you have to run). But he loves playing in the games! He scored his first goal yesterday, and he was so proud! He is quite a natural at it -- he isn't intimidated at all, he has a good sense of the field, and he has some pretty good moves.

How could I not give them this little piece of normal childhood? Yes, it's killing me, and I don't have time for anything else (shopping? cooking? cleaning? bah, who need's them!), but I had to do it. I just had to.

I'm still working Tuesdays. My husband and I both wish I didn't have to, but there are no alternatives in sight. My husband, wonderful man, has taken on so much to ease my burdens, he is at near breaking point. If he worked my day, too, that would mean six days at work a week, plus the extra duties at home. We can't afford to hire someone else, especially when the people we've tried in the past have been so ineffective.

My oldest son was in a bike accident a couple of weeks ago. The front wheel of his bike came off, and he hit the street at relatively high speed with his face. He suffered lacerations, abrasions, a broken tooth, and a broken nose. Luckily, he was wearing sunglasses, because they were destroyed but saved him from damaging his eyes. My husband was at jury duty and I was at work the day it happened. Of course, I closed down the store and spent the day with my son in the emergency room. He looked so terrible -- we jokingly called him a zombie. I thought I was holding up pretty well for him. But, when my husband finally got back and relieved me at the hospital, I broke down completely sitting in my car in the parking lot. Boys! If they don't kill themselves, they'll kill their mothers.

I tried to go to church today, even though I knew I wasn't up to it. I love the feeling I have when I'm at church. I stopped to talk with a friend, and half way through our conversation, I was crying (I'm an emotional wreck on my bad days!). I stayed for about 15 minutes, just enough time to take the sacrament. While I was there, I saw familiar faces and the familiar routine of people going about, serving, teaching their classes, taking children to the bathroom, etc. Oh, how I miss it! I ache.

So, I'm just hanging on right now. Barely hanging on.

Visible Illness

Well. I've decided to come out of hiding. I am going to post an actual picture of myself for my profile picture.

First of all, this is the picture I chose for my Facebook profile -- I think it's a good idea to show that I am a happily married woman on a social networking site, don't you think?



Second, this is the picture I chose for my family blog. I think it shows my joie de vivre, kind of fun and sassy, like me. I really do love my family and my life.




Finally, in spite of protests from my vanity, this is the picture I am choosing for my CFS blog profile:



The reason I chose this picture is because CFS is not an invisible illness. It is visible in the dark circles and lines that cover my face. It is visible in my furrowed brow when I'm in pain. It is visible in my hunched shoulders. It is visible in my gait and pace when I walk. It is not an invisible illness.

I have a few theories on why people don't see my illness. First, I think that many people are too caught up in their own "invisible illness" to notice my pain and suffering. Life weighs heavily upon all of us from time to time. It is difficult, and sometimes frankly impossible, to notice others' pain when our burdens are overwhelming and hard to bear.

Second, I think that many people just can't stand the thought of a friend or loved one having to go through this ordeal. It is scary to think that I will never get better. I've dealt with this kind of denial. To not have "me" back again? Ever? Surely, that is not something I embraced easily. How can I expect the people I love to believe it? No, I forgive them for holding on to the belief that this has to be something else, something the doctors missed, something that can be cured.

Finally, I think that there are just some people who won't see because then it would prove them wrong. They would be forced to look in the mirror and see someone who judges harshly, who believes the worst in people. They would see dark holes where their compassion and humanity should be. It would be an ugly image staring back at them. I pity these people most of all.