Living the CFS Life

I Won!

2010-02-20T07:48:00.000-08:00

All right, I'm not the only one, but still, it was fun to get the Sugar Doll award! Check out my post at the other Living The CFS Life blog.

Inch by Inch

2010-02-15T09:41:00.000-08:00

New post on my other blog: http://living-the-cfs-life.blogspot.com/.

New Post

2010-02-12T09:19:00.000-08:00

I have a new post on my new blog: http://living-the-cfs-life.blogspot.com/.

Ch-Ch-Ch-Ch-Changes!

2010-02-09T09:43:00.001-08:00

I wanted to let you know that I'm consolidating all of my blogs under one account, so they are a little easier to manage. I imported this blog to http://living-the-cfs-life.blogspot.com/. Notice the only difference in the address is that I added dashes between the words.

I don't want to lose all my friends and followers, so I'll leave this blog up to redirect people to the new one. I hope you'll still come and visit me!

Past Fear and Frustration

2010-02-04T10:21:00.000-08:00

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

Yeah, That Was Humiliating

2010-01-26T09:10:00.000-08:00

Since my health has deteriorated, my husband has been trying to convince me that I need to start using those motorized shopping carts you see at the store. I agree with him, of course -- my shopping trips are killing me, but using those carts would be like admitting that I'm ... disabled. It would be acknowledging that I'm not doing well and that perhaps I'm not getting better as quickly as I thought I would. Maybe I wouldn't exactly be giving up, but I would be giving in. But surely it would be helpful if I didn't have to walk up and down the aisles, right? Right?

Um, wrong. Yesterday, I finally decided to give it a try. I took my 16 year old son with me to help. He had used the carts before due to an injured foot, so I asked him to show me how they work. I nearly crashed into several people right from the start. I kind of got the hang of it, and we went to the produce department. I sent him scampering in different directions to get the items I needed. I tried to wheel myself to items that were at eye level. It was clumsy and awkward.

And yes, people stare! They stare a lot. Except they do it in a way that they think makes them look like they're not staring. They avert their gaze if you glance up at them. They become very interested in onions.

I was flustered. I passed by items I needed, and then had to back up with that annoying garbage truck beep announcing to everyone that I didn't know what I was doing. I felt like I shouldn't stand up to reach for items on a top shelf, because then people would know aha! I was a fraud! I was a perfectly healthy individual who had no right to be zipping around in one of those things.

I ended up missing a few things that were on my list because I just wanted to get out of there. The entire visit took quite a bit longer than my usual visits, because those things just don't go that fast! I've concluded that the stress from the experience was just as damaging as the exertion from walking the aisles.

Lesson learned.

Getting My Feet Wet

2010-01-23T13:52:00.000-08:00

Well, I said I was going to start taking my writing seriously, and so I've begun! On my writer's blog, I've posted the beginning of a new short story. I would love to have you check it out and give me your impressions -- did the opening effectively "hook" you, were my descriptions effective, did it leave you wanting to read more?

Check it out at:

http://shelli-proffitt-howells.blogspot.com/2010/01/calling-all-critics.html

Clueless

2010-01-22T10:02:00.000-08:00

I have been doing oxygen therapy for over three weeks now. Is it helping? I don't have a clue. I have had flu-like symptoms for almost two weeks -- persistent sore throat, sneezing, sinus pain, nausea. I know that's normal for most people with CFS, but it isn't typical for me. Sometimes I get a sore throat from overdoing it, but it's usually mild and only lasts a short while. Is this that hopeful worsening of conditions that indicates I'm actually getting better? "Die off," or something like that? Or did my kids pass on the actual flu to me, and I just can't get rid of it?

I think clueless pretty much sums me up. I surf the internet incessantly, trying to know what is going on with me. I'm desperate for improvement. I'll try anything. And I do try everything. I take the right supplements. I follow the CFS rules. I convince myself I have a modicum of control. I believe if I just ... then I'll get better. Maybe not all the way better, like I once thought, but at least a little better, right? Right? No. I keep slipping, slipping, slipping, down this nasty slippery slope.

To A Healthy New Year

2010-01-13T11:05:00.000-08:00

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

The Antidote

2010-01-10T13:28:00.000-08:00

Hope: v. to wish for something with expectation of its fulfillment; to look forward to with confidence and expectation; to expect and desire; n. a wish or desire accompanied by confident expectation of its fulfillment; something that is hoped for or desired; one that is a source of or reason to hope.

Hope is a dangerous thing. It builds expectations. It shines the light on the past as a titillating promise of the future. It paints tomorrow in such lovely colors. And invariably, if you give it too much attention, it disappoints.

I haven't given up hope. On the contrary, I honestly believe that I will see miracles, that researchers will find a cure, that I will someday be free from CFS. But, I think it is safest for me to keep hope tucked away in my back pocket -- always there, but never consciously acknowledged or relied upon.

Love is the true antidote to despair. A note that says "I miss you." A gift left at the door. An unexpected visitor who can only stay a minute. Words of encouragement, reminding me I'm not alone. Little acts of kindness. Hugs and kisses and that spot right under my husband's arm where I fit perfectly as we watch TV on the couch. These are the things that calm my troubled heart, bring peace to my soul, and remind me that this life ... this life ... is worth living.

Despair

2010-01-05T10:56:00.000-08:00

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

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

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

Tomorrow is always a better day.

Congratulations!

2010-01-01T10:19:00.001-08:00

Congratulations to Treya, Sue, Alyson, and Laurel, who each were recognized by Wellsphere in their People's HealthBlogger Awards 2009! It is nice to see our community so well represented. For a full list of the winners, you can go to

People's HealthBlogger Awards 2009.

Cake Wrecks and Charitable Donations

2009-12-11T08:21:00.000-08:00

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?

2009-12-07T10:58:00.000-08:00

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

2009-11-27T09:53:00.000-08:00

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

2009-10-27T10:04:00.000-07:00

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

2009-10-20T11:01:00.000-07:00

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

2009-10-11T11:56:00.000-07:00

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

2009-09-17T20:03:00.000-07:00

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.

Good News

2009-09-08T11:43:00.001-07:00

A couple of good news tidbits:

First, I finished the September issue of my Fatigue Busters newsletter and sent it out! That had been hanging over my head for a week.

Second, I am feeling infinitesimally better! I have to warn myself that I am not back to baseline yet, so I need to ease into it gently. I have these bursts of energy and just want to DO something!

Third, my blog AND my website have both been listed on Worldwide Association for ME/CFS Awareness and Research (WAMCARE)'s website!

http://www.wamcare.org/websites.html
http://www.wamcare.org/bloggers.html

Many of you are listed on the bloggers list, as well! Congratulations!

Catharsis

2009-09-02T13:50:00.000-07:00

Ah, as you all know, I have been in the middle of a nasty crash for some time now. It has, quite frankly, scared me. I had been used to bouncing back rather easily from stress-related and exertion-related mini crashes. I expected the same from this one... but it didn't exactly go that way. So, relying on many of your own experiences and suggestions, today I did a little personal exploring.

I sat down to write about my current stresses to confront the emotions surrounding them. There are several swirling around my psyche these days -- back to school, soccer for the boys, a new school for my struggling son, the economy and our new business, a messy house. But as soon as I started writing, the only thing that my pen would allow to find its way to paper was my daughter who is now off to college.

I am happy for her. I am proud of the young lady I have raised. I feel she is ready for this next step in her life. I know she will excel. I know she is in a good place. I am excited to see where she takes this adventure and who she chooses to become. I love her so much.

Then, the image that came to my mind was not my teenager who just left home, but my baby as I first held her in my arms. I thought about our special relationship as she grew to be a toddler. I remember our wonderful friendship and how everything about her was delightful to me. I loved being a mom! I caught myself thinking, "I've never been happier than during those early days of motherhood."

I broadened the picture in my mind and thought about what was going on in my life back then, and I realized it was not an easy time for me. It wasn't the bliss I was painting it to be. I, like many others with CFS, had been abused as a child. Having a child of my own brought up suppressed emotions, and I began dealing with the issue for the first time ever. It was beyond painful -- it was excruciating. There were times when I thought I would lose myself in the pain of it all and just stop being. My husband was remarkable, loving, and supportive ... but it was in the love of my little girl that I found solace and relief. Holding her, loving her, having her love me back unconditionally -- it gave me a reason to live when I really didn't want to anymore.

I realize how much I have relied on her over the years. When I went through a horrible depression, she took on extra responsibilities to help around the house, even though she was only 8 years old. She has always been able to reason with her brothers and sisters to restore peace in our home. She treated her brothers and sisters like friends, inviting the younger girls into her room for "sleep overs" and including her younger brother in her own circle of friends. Since I've had CFS, she has helped rally the kids to do their chores when I was too exhausted to nag any longer, and she has run numerous errands for me in her car.

I realized that my reaction to her leaving home hasn't been fear for her, but rather fear for me. Even though I am years into the healing process, it terrifies me to think that IT might rear its ugly head again, and she won't be here. It feels like someone took away my security blanket in the middle of the night while I'm still afraid of the dark.

I'm not that little girl anymore. I'm a grown up, and grown ups don't need their children to take care of them (at least for another 30 years or more, I hope!). It's time to start using my adult coping skills and let my girl go.

As I write, there is a storm brewing outside. A fierce wind is blowing leaves and debris into the roads, and the temperature has dipped 20 degrees. Instead of smelling the smoke from the recent fires, I smell the fragrance from the flowers in my yard that have been disturbed by the upheaval and dust mixed with a trace of moisture. The clouds are dark and enigmatic, moving closer. There's a crackle on the radio that tells me lightning has started nearby, and I hear distant thunder. I love this weather! It sweeps away the heavy 100+ degree F days that have been lingering too long. Everything is fresh and new. It mirrors my soul.

Adrenaline Junkie

2009-08-26T12:07:00.000-07:00

I think I thrive on stress. Not the normal background soundtrack to my life kind of stress, but the in the moment kind of stress. Like when I speak in front of a large group of people, or I race to complete a deadline, or I handle a crisis fairly well. It's almost like I feel high for an hour or two after!

And then I crash. Muscle fatigue, extreme exhaustion, brain fog, headaches -- you're all familiar with it.

I think I've been cycling in and out of it for weeks now. I wake up in the morning, and I'm hit with the worries of the day, sending a rush of adrenaline through me that won't let me doze anymore. I scurry around getting the kids off to school, and then when it quiets, I rest. The rest brings on a crash, and I can barely get out of it! Yesterday, I actually had to sit down in the shower (I'm usually higher functioning than that). I called my husband and started crying before he even said hello. Not good.

Then it's time to pick up the kids and shuttle them to various activities, and I'm living on adrenaline again. We get home in the evening, and I have to ask one of my teens to put chicken nuggets in the oven for me. I try to interact and help the kids get their homework done or get ready for the next day, but all I can manage is a little half-hearted nagging. By the time bed comes, I collapse.

It is finally dawning on me that perhaps adrenal fatigue is a part of my CFS! (Duh.) Does anyone have a way of breaking out of the stress cycle? Is there a way to "talk yourself down" from an adrenaline high? I'm interested in opinions and ideas!

Making Connections

2009-08-20T11:28:00.000-07:00

Today I've had my own "Aha" moment.

I woke up feeling surprisingly well. I looked in the mirror, and I didn't see a zombie looking back at me. I was feeling restless during my first rest this morning. I felt ... better!

What made all the difference in the world? My oldest son (15 yo) had been on vacation with another family for 3 weeks, and he just got home yesterday.

Being a busy mom of five other kids, I didn't even notice how much I was worrying about him! He didn't have phone service or internet access most of the trip. He was able to text his sister a couple of times, and when he did, he sounded homesick. This was supposed to be a great adventure vacation -- crossing the US, visiting the Mall of America, Mount Rushmore, LDS church history sites, the Grand Tetons, Yellowstone Park, and more. There was mountain biking and hiking and camping and river rafting. It was the chance of a lifetime! He had a great time, but missing us all put a damper on the trip. And the whole time, I worried.

So, he got home yesterday, while I was working at the store. He spent the entire afternoon with his father, getting our truck fixed. They had a fun time entertaining an 81 year old homeless man while they waited for the truck. Then, he took off with his sister and their best friend and did "stuff" for awhile. After work, my husband took me out to dinner, like he always does, and then my son joined us!

He was so cute! He ran through the restaurant, jumped up onto the bench in the booth, and gave me a huge hug! He kept us laughing as he shared all his stories from the last few weeks. It was a wonderful dinner, and I was so happy to have him home. He took off with his friends after dinner, but came into our room before bed and chatted some more until after midnight.

His favorite sarcastic remark before his vacation was "I hate this family!" He has sworn to NEVER say it again, lol!

My next big stress is sending my oldest daughter off to college on Sunday. I hope I'm not a wreck like I was with my son. I don't think I will be. She is ready, I know. She is such a smart girl, and she has a super fun personality. She is absolutely darling, so I'm sure there will be plenty of boys to show her some interest. I know she'll excel in her classes, because she has the skills to do so. I feel like this is going to be such an amazing growing experience for her.

I've spent so many years making room in our family and in my heart for each new baby. I wonder what I'll do now that I'm beginning to send them off? I wonder how our family will deal with shrinking, not expanding. Anyone have any good stress remedies?

Rebel, Rebel

2009-08-15T12:05:00.000-07:00

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

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

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

It never gets easy admitting that you are ill.

To Be, or Not To Be ...

2009-08-13T13:57:00.000-07:00

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

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

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

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

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

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

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

And I'm mad.

Exercise Experiment #1 Results

2009-08-10T18:32:00.000-07:00

I put my theory to the test this weekend. Since my sister was in town, I took my kids swimming at my mom's house Saturday. The water was the perfect temperature! It felt good floating around a bit, but it wasn't quite enough. I decided to try just a couple of laps. I slowly crossed the pool and back -- leisurely, nothing too strenuous at all. I rested for awhile and made sure my heart rate was back to normal. I crossed the pool again; rested; then again two more times, resting in between. My body felt so good! My muscles loved the feeling of stretching and working just a little bit. It was wonderful. I came home and slept like a baby.

The next day, Sunday, my husband took all the kids to his sister's house and left me all to myself. That would be a treat on any day! But right after my excursion to my mom's it was wonderful to be able to completely relax and rest and do absolutely nothing. I felt pretty good through the afternoon, and then wham! Classic post-exertional malaise! Even after all that resting, I was exhausted. I knew it had to be because of the swimming the day before, because I obviously had done nothing to tire me all day.

In one sense, it was really good -- I've never been able to see much of a correlation between my activities and post-exertional malaise before, because I'm always busy and I often overdo things. I can never see a cause and effect relationship. This time it was crystal clear.

The bad news, of course, is that I have to be careful with any forms of exercise. (You already knew that, didn't you? I'm just a little hard-headed, I suppose.) I crave exercise, and I feel like I need to find a way to fit it into my CFS life. I'm going to keep searching for activities I can do without making things worse. I know that yoga is well-tolerated, so I'll work that back into my day again. My next experiment will be to see if I can tolerate tiny doses of aerobic activity broken up throughout the day -- maybe two minutes here, two minutes there -- until I can work up to 10 minutes a day total. (Dream big!)

I'll let you know how that goes!

Houseworkaphobia

2009-08-03T12:34:00.000-07:00

I am afraid to clean house.

There is actually a rational explanation behind my irrational fear of housework. During the first year of CFS, when the doctors couldn't tell me what was wrong or what to do to fix it, I did what we typically do -- I pushed myself to try to keep up with my "normal" life. As a result, I was in a constant, 24/7 zombie mode. The fatigue and brain fog were so severe that I couldn't maintain a decent conversation with anyone. I spent hours on the computer, my only respite. My family thought I was addicted. They would come in and interrupt me, trying to interact. They would say something to me, and I'd have to stop, look them in the eye, and still ask them to repeat themselves three or four times before what they were saying made any kind of sense to me. I would still be on the computer when my husband came home from work at 9 pm. I would be desperate to get some sleep, but I was so tired, I couldn't even find the energy to get up and walk upstairs to bed. It was bad. It was ugly. My family suffered.

Then I discovered I had CFS! And pacing! And I started to live within my "energy envelope". Sort of. I'm still working on that. But, anyway, the brain fog began to clear for moments at a time. I could actually talk to my children. And parent them again. It was difficult, because they had become quite feral and did not take kindly to the retaming process. Nonetheless, I found the strength and energy to stick with it, and we are becoming a normal family again. I actually played a board game with my children the other day. It was amazing.

So, my great fear is that if I start doing housework again, I will no longer have energy left for my family! I need to keep an energy reserve for those unexpected moments that require me to parent. I don't want to be unavailable to them again because I was wiping the kitchen counters, or scrubbing the toilets, or sweeping my front porch.

Still. I want to be able to bless my family by creating a more peaceful, inviting home for them ... and me. I'm in the middle of reevaluating how I spend my time. I am coming to realize that too much time on the computer is as harmful as overdoing it physically. I need to start "switching" activities, and maybe I can add a few minutes -- 5 to 10 at a time, maybe -- of housework to my day.

I am going to face my fears and start FlyLady(FlyLady.net) this month. I discovered FlyLady when I was pregnant with my youngest son. Her program helped me dig out of disarray after months of morning sickness that left me unable to do anything. I realize things are different this time, so I'll have to modify it and keep it within my abilities. But I think I can do this.

AND keep my cleaning lady. ;)

National Fatigue Survey Launched

2009-07-29T12:12:00.000-07:00

I think this may apply only to those in the US. :( Results will be published March 2010. Please let your voice be heard!

National Fatigue Survey Launched

by The Fatigue Management Institute

The National Chronic Fatigue Survey, an internet-based survey of fatigue related to chronic illness, has been launched by the Fatigue Management Institute of Florida Institute of Technology. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue.

The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at:

http://research.fit.edu/fmi

Deer in the Headlights

2009-07-27T13:35:00.001-07:00

I saw it coming. I really did. But there was nothing I could do about it.

Last week was about as bad as a week can get! Busy and stressful -- not a good combination. The a/c went out, and it took the repairman four days and two visits to fix it. We had pest control spray our house inside and out, forcing us to leave home for a couple of hours. My teenage son stepped on a stick on Father's Day, and it has been infected ever since. We had a couple of lengthy doctor's visits, as well as a couple of trips to get x-rays. It is not healing well, and my doctor informed me that he may require surgery. We don't have insurance right now, since we started our own business, and the cost would be about $10,000. Yikes! My daughter was in her first accident the other day (not her fault!) which meant I've been helping her with insurance adjusters and auto mechanics. My husband thought it would help me if we could get away, so we got a hotel on Friday. The bed was atrocious, and I did not get hardly any sleep! He took me to see Harry Potter the next day, but a 2 1/2 hour movie is not something I tolerate very well these days. (I loved the movie, though! I've read all the books.) After, we walked the mall for a little while, looking for a blender. We had an early dinner that was nice, but I ended up skipping my afternoon rest. Sunday, I not only taught the lesson for our women's group, but I also gave a talk in the main meeting when the families are all together. Sometimes I can piggy back an extra activity on top of an already busy day, if I rest enough before and after. I had accepted the assignment well before I could have known what kind of week it would be!

And ... yesterday, I had a terrible crash! Of course, I knew it was coming. I'm surprised it didn't hit me earlier. I came home from church and headed straight to my room. My husband fixed me a delicious salad and sent it up to me. My youngest was so sweet, making sure I had enough to eat, filling my water bottle, offering to share his dessert. I was woozy and passing out; I developed a migraine that prescription strength ibuprofen didn't help; my muscles AND joints were aching all over. I slept, but just a little bit. My eyes were twitching so bad, I felt almost blind! I finally fell asleep for good at 11:30 pm, and I was out cold until 9 am.

And yet, today, I am rebounding pretty well! I am taking it super easy today, of course, but I'm out of bed. I was able to change my sheets (long needed!) and do a load of laundry. I can't believe I'm not worse off today.

Something is seriously getting better. I feel like the tortoise and the hare ... and the snail. I'm at the beginning of the race, but I really think there is a finish line somewhere down this road. Yesterday was awful, but I am feeling so full of hope right now.

By the way, I did a great job with both my talk and my lesson! ;) That may have been a little help from above!

Prevagen Clinical Trial

2009-07-23T14:52:00.000-07:00

I wanted to let you know that I've signed up for a Prevagen clinical trial. Prevagen is a supplement that has anecdotally helped people with CFS and Fibromyalgia. The company is now doing clinical trials to see how wide spread the benefits actually are. They are doing a double blind study -- you'll either get the supplement or a placebo. At the end of the study, they tell you which you were given, and if you had the placebo, they'll give you two months of the supplement for free.

They are looking for more participants. If anyone is interested, you may check out their website:

www.prevagentrials.com

Why I Love My Husband

2009-07-14T19:48:00.001-07:00

An old boyfriend got in touch with me recently via Facebook. The first thing I did was check my pictures to make sure there was nothing embarrassing posted. Then, I thought, "Good grief! I would die if he saw me now!" CFS has aged me a good 7 to 10 years beyond what I should be, and as you might have gleaned from my last post, I've put on a bit of weight, too.

Well, then I started feeling bad when I realized I don't put too much effort into looking good for my own husband! Doing my hair and makeup tires me. I don't like to waste my valuable energy on it. I save it for Sundays and church. But, I thought, for his sake, I ought to reconsider my beauty routines.

I brought it up to him the other night. I apologized and suggested I should try to do better. His answer? "Honey, I don't want you to change a thing. When people see you looking tired and haggard, the way you really feel, then they start to understand what you are going through. I want more people to understand."

I love this man!

(although, I was hoping he was going to say, "Oh, no, honey, you still look fantastic!" ;) )

Quest

2009-07-13T12:51:00.000-07:00

(on a side note -- I used to love Jonny Quest!)

I've decided that I am on a quest. Before chronic fatigue, I was not exactly a health nut, but I loved being healthy. I never felt better than when I was a young adult with a gym membership. My husband met and married me because of that hard body! (Yeah, maybe for a few other reasons, too. ;) Even once I started having babies and couldn't make it out of the house regularly, I still maintained a work out routine from home. Exercising just made me feel so good.

Needless to say, since chronic fatigue, my exercise routine fell to zero. I lost muscle, and my body fat percentages sky rocketed. I added some gentle yoga, but it was more for relaxation than anything else. It didn't seem to help my growing belly and bottom. In the back of my mind, there's this little voice that keeps telling me that no exercise at all just isn't right! It is unhealthy, and I'm afraid that if I stay here, I will be working against my body and hindering my recovery.

So, I am on a quest to find out how to exercise without triggering post-exertional malaise. I have some ideas -- it seems like prolonged aerobic activity is the culprit. Perhaps intermittent "spurts" of aerobic activity with rests in between to return the heart rate to normal would be tolerated. I actually tried this on Saturday at my mom's house. The kids were all swimming, and I was sitting in the shallow end taking it easy. Finally, I couldn't take it any more, so I swam a lap. Oh, such daring! I let my heart rate come back down, and then I did it again! I got at least five laps in that way. And I didn't crash that day, or the next. Maybe I'm onto something?

Disclaimer: I do have CFS, so my "experiments" are completely dependent on pacing and how I'm feeling day to day. Don't expect any "results" to magically appear any time soon!

Everything Has Its Price

2009-07-06T10:06:00.000-07:00

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.

Adding a Twist

2009-06-30T09:58:00.000-07:00

I've known for awhile that I needed to change my eating habits. It is a very good possibility that I have candida overgrowth. Plus, I'm susceptible to hypoglycemia. I know that stabilizing my blood sugar will help me keep my energy stable, too.

So, I have just finished a juice detox, and I am starting a low carb diet. I've done South Beach before, and I always feel good when I'm eating that way. I'm going to add a lot more leafy vegetables. I'm taking garlic, oil of oregano, and probiotics for the candida. Goodbye sugar, white flour, regular pasta, sweets. Oh, except I think I'll keep my daily doses of dark chocolate -- you know, for medicinal purposes!

I've also started taking a magnesium supplement, and I want to boost my glutathione levels. I'm looking at a couple of different supplements to see which would be best.

Does anyone know any more tricks for fighting candida? From what I've read, that's about it, but I'm always open to suggestions!

My Alter Ego

2009-06-26T20:28:00.000-07:00

I have a wonderful friend who is somewhat of a mirror image of me -- we both have tons of kids, all pretty much in the same age range. Our children love to play together. If it isn't a sleep over at our house, it's at theirs. Sometimes just the boys get to come over, sometimes just the girls, sometimes it's the whole crew. I always enjoy chatting with her, because we're faced with the same challenges and parenting dilemmas. She's creative, like I am, so it's fun to share ideas.

I have to admit, she is a super dynamo, and there have been times that I have compared myself to her and found myself wanting.

Today, I dropped my boys off at her house, and we talked about how the summer is going. She shared with me how she is off to some new adventure every day with her kids -- nothing too big, nothing expensive, but little things that they had never done before. They'll go to a new park and have a picnic, or head to the museum in town, or find a craft place, etc. She tells me it's wonderful, because the kids are eager to get their chores done in the morning so they can participate in their daily outing.

Ah, how different we are! I have to say, that isn't something I would have done even in the best of health. But, I would have taken her idea and adapted it for us -- maybe make it a weekly adventure. I was just thinking the other day of how I used to be so brave. Even when my boys were just babies, I would pack all six kids into the car and take them on my own to Sea World or the Zoo or the Wild Animal Park while my husband was at school or work. They were always so well-behaved! We never had any melt downs or tantrums, no matter how tired they were by the end of the day. They were simply delightful in every way. I miss that.

Do I wish I could be her? No. Definitely not. I wouldn't trade my circumstances with hers for anything in the world. But, in a weird way, it was kind of like looking through the looking glass and seeing my alter ego, the person maybe I could have been if not for the chronic fatigue.

Just Thinking ...

2009-06-21T09:37:00.000-07:00

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

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

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

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

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

Whammy!

2009-06-11T15:56:00.000-07:00

Wow! I haven't had one of those days in quite awhile!

Yesterday was my day to mind the store. I always hope for a quiet day at work, but alas, it was not meant to be. I had several customers throughout the day. One customer in particular was pretty demanding, not only physically but mentally as well. He was a nice fellow, and it turned into my biggest sale of the day, but it also took a lot out of me. He kept me on toes ... and my feet! ... for the better part of an hour.

After work, I went to my daughter's awards ceremony. My oldest is graduating from high school with honors, and she was receiving a scholarship award as well. I'm very proud of her -- what a good example to set for the rest of my brood! I wouldn't have missed it for the world. However, I was a bit late arriving since I was coming straight from work, and so I had to park in the farthest parking lot. There was a steep hill I had to climb to get to the venue. I have not had a workout like that since my pre-CFS days!

I had no idea that the awards ceremony would last -- are your ready for it? -- two hours! We were huddled on benches as the temperature dropped and the wind picked up. My muscles were tensed trying to generate warmth. My back was aching, and it was nearly unbearable!

By the time we got home, it was after everyone's bedtime (mine included). As I was getting ready for bed, I noticed my pedometer -- over 5300 steps! To put that in perspective, before CFS I was averaging 5000-6000 steps a day, with a busy day pushing 8000. Since CFS, 3000 steps is a busy day. Today, I have 489 steps so far. :) I fell asleep almost immediately, and I slept like a rock until 9 am this morning.

Here's the amazing thing: I thought I would be headed for a crash for sure! And yet, I am feeling surprisingly good. My energy is steady, I'm not sleepy, and I haven't felt like I need to be horizontal. I'm not feeling any post-exertional malaise. Granted, I am having a super slow day (hence the 489 steps), but still ... I must be doing something right if I've tolerated that kind of day so well.

Hmmmm ... hopeful?

Sweetness

2009-06-08T13:19:00.000-07:00

I have been trying to adjust my diet lately, and I've come upon an interesting question: Which sweetener is better for you? I've heard that aspartame is not good for people with CFS, but I seem to tolerate it better than actual sugar. I love to have a SlimFast shake in the morning, because I hate breakfast and it's the only thing I can stand. Also, I want to start drinking sports drinks for electrolyte support, but high fructose corn syrup is definitely not good. Is sucralose any better? And I really like the Crystal Lite packets you put into your own water bottle, but again ... aspartame. Does anyone have any experience or advice with this?

As an aside, I have actually had a good week! You couldn't tell it from my lack of posts. Of course, the end of the school year is ridiculously busy. But I've felt a few days of really good energy! I don't know why, because I'm back to feeling blah today.

Plus, I got the first issue of my Fatigue Busters newsletter out -- talk about stress! Why do I worry that people I don't know and will never meet won't like my newsletter and website? Am I really that identified with it? Yes, I think I am. Maybe that means I identify myself too much with CFS. Hmm, something to think about. I also updated two major pages on my website -- pacing and diet. Much better information now, I think. I also added a bit to the natural treatments section of the website. Good work, eh?

This is the last week of school. :) I love having the kids home with me. Plus, I have the added bonus of not having a fixed schedule to stick to. I can actually allow my body to wake when it wants to instead of being jolted out of sleep by the alarm. That's got to help, right?

WOW! Could This Be Possible?

2009-05-28T14:00:00.000-07:00

Dr. Kenny De Meirleir announced today that he has unlocked the mystery of ME/CFS.

http://www.prohealth.com/library/showarticle.cfm?libid=14579

Not only does he say he knows what causes it, but there will be a simple urine test available, most likely over the counter, for diagnosis. And then ... treatment? Cure? Is this possible?

Messy

2009-05-27T11:02:00.000-07:00

I have six kids. Even before CFS, my home was barely tidy on the best of days. The day I conceived my first child I knowingly and lovingly sacrificed shiny surfaces and clear pathways and anything white. I am OK with that.

However, I must admit things have gotten out of hand since CFS. I thought I had been doing a pretty good job of teaching my children work and responsibility. But once I got sick and could no longer nag them to do their work, it all went downhill rather quickly. Instead of doing a job right, they were doing it just good enough -- and that bar kept getting lower and lower.

I finally recognized that we needed help. I took my friends up on their offer to clean my home. They were wonderful and spent a week digging us out. I could breathe again! The kids could have friends come over! We were not too embarrassed to open the door when the doorbell rang! But old habits returned quickly, and messy was creeping up on us again.

I am now having a woman come twice a month to clean. Yesterday was her first day. I did not spend the entire morning frantically cleaning before she got here -- you all know how that would have turned out. Well, she wasn't happy that she had to clean around the clutter! She made it very clear she disapproved of how messy my home was. I explained I was sick, but she obviously didn't get it. She wanted to know why my kids weren't helping out more. She gave me instructions on how she wanted it picked up better when she comes next time. And, she said she needed to get started earlier in the morning than I had her scheduled.

I'm just wondering what ever happened to discretion and respect in the employer-employee relationship. I am paying her to clean my house. That implies that yes, it is dirty. Why the disdain? If I were the kind of housekeeper she thinks I should be, she wouldn't have a job! Does she really want to encourage me to get on top of things? Would the satisfaction of knowing she shamed someone into keeping a clean house compensate for the lack of income?

By the way, she was fantastic and worth twice what I paid for her services! I will happily endure her huffs of indignation when she comes back in a couple of weeks.

ME/CFS Awareness: Hidden Blessings

2009-05-14T12:49:00.000-07:00

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. Becoming creative. I've seen this in other people with CFS, too. Perhaps it's all that internalizing that taps into it; perhaps it's a need to express the upheaval of your life. Maybe it is even because you have to become creative just to enjoy life! Discovering my creativity is a fun process.

6. Ability to find joy in the tiniest things. I can't believe how much I missed before! Lying in bed, listening to my boys play together, hearing their giggles. Walking outside and feeling the sunshine on my face. Being nearly asleep, but waking when my husband reaches across and kisses me so tenderly. I never had time for these things before.

7. 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.

8. 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.

9. Learning, learning, learning! Emotionally, spiritually, intellectually, physically -- every day brings a new lesson, something I never knew before.

10. Gratitude deeper than I could have expected. For true friends, for good days, for knowledge and understanding, for small kindnesses, for my family, for my faith, and for a million things more.

ME/CFS Awareness: Managing CFS

2009-05-13T11:30:00.000-07:00

There is no treatment for CFS. You treat the symptoms; you manage CFS.

I currently do not take any prescription medication. I have in the past, but it was either not helpful or made things worse. Sadly, the medical community has not been my best friend when it comes to CFS.

So, here is what I do to take care of ME (get it?):

1. PACING!!! There is no drug or supplement or protocol that has done more good for me than pacing. My quality of life skyrocketed once I found out that you can not "push through" CFS. I still make mistakes ... and learn my lessons ... but overall, I do pretty well making sure I get plenty of rest between high exertional periods. It has allowed me to go from being a zombie 24/7 to being lucid and functional 3 to 7 hours a day.

2. Formal, scheduled periods of rest. This is a bit different from pacing, I think. Twice a day, regardless of activity level or level of fatigue, I rest for 30 minutes. I go in my room, put on my migraine/sleep mask, set the timer, and just rest. I try to add a little deep breathing and maybe some light visualization for relaxation. But I don't push it. Sometimes my mind races for the full 30 minutes; sometimes I fall asleep. Usually it's somewhere in between. I usually feel much better afterward, but if not, it's a great gauge that tells me I need to slow down a little more.

3. Supplements. I discovered pretty early on that you can be so desperate to get rid of CFS that you'll spend a small fortune to try anything! I use a little more restraint now. My rule of thumb is that it has to either be obviously effective or good for my overall health. At night, I take a multi-vitamin, calcium, magnesium, fish oil, and melatonin. In the morning, I take a mega dose of B12 sublingually, CoQ10, and a B complex. I take .75 oz. of dark chocolate twice a day, after my rests. I have begun taking additional anti-oxidants, including CoQ10 in the afternoon to see if it helps with my afternoon slump. I had been taking NADH, but I stopped for a few weeks to see if it was helpful. I think it was, so I'll start taking it again next week. I'm also going to be testing electrolytes and d-ribose.

4. Exercise. Right now, I do about 15 minutes of stretching daily to ease pain. I am hoping to begin adding 5 minutes of cardio. No panic, just something very low impact that I can monitor and pace carefully -- probably rebounding (mini-trampoline) because it has the added benefit of flushing the lymph nodes and improving the immune system.

5. Diet. OK, I have to admit this is more theory than practice at this point! Although I have made some progress by eating healthy dinners. I have easy, healthy recipes that even my kids can make if I'm not up to it (see my other blog, The Flagging Chef, sidebar). The next step is to cut down on the sugar and other high Glycemic Index foods so I have a more steady stream of energy. Ha! We'll see.

Did I leave anything out?

ME/CFS Awareness: How CFS Affects Me

2009-05-12T08:37:00.001-07:00

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.

Kicking Off ME/CFS Awareness Week!

2009-05-11T17:11:00.001-07:00

It looks like ME/CFS Awareness Day (May 12th) has evolved to ME/CFS Awareness Week! Which is nice, because really, most of us need to "pace" our posts anyway, right?

I'm taking Ashy's lead, and I'm going to be sharing what my symptoms are, how they affect my life, and what I am doing to manage this disease.

My Symptoms:

Fatigue (duh!)
Cognitive dysfunction
Impaired memory
Difficulty with word finding
Word switching (always humorous)
Post-exertional malaise (but not severe)
Unrefreshing sleep
Headaches, sometimes migraines that last days
Sore throat, but only when I've overdone it
Night sweats
Sensitivity to light
Sensitivity to sound
Sensitivity to cold
Eye spasms (blepharospasm or myoclonus)
Tinnitus (ringing ears)
Orthostatic intolerance
Dizziness
Fainting
Jaw pain (TMJ)
Weight gain
Muscle soreness when I wake up
Anxiety

My worst symptoms are the fatigue (again, duh!), cognitive dysfunction, and the ever-embarrassing eye spasms! The rest of it is annoying and bearable.

Gardening: CFS-Style

2009-05-05T12:37:00.001-07:00

Every year as Spring approaches, I get a sudden inexplicable desire to garden. Not just any kind of gardening -- I want a summer vegetable garden, just like I remember from my childhood. I loved the baby carrots, peas, and beans. I loved fresh corn on the cob grown and harvested from my own backyard. I loved how the zucchini took over more than its assigned mound of dirt. The watermelon was the perfect epitome of summer. And what could be better than tiny cherry tomatoes, still warm from the sun, a juicy burst of flavor in my mouth? Summer has always been my favorite time of the year, and these are the flavors of summer.

I can't say that I was an accomplished gardener before CFS. In fact, we only had a successful garden twice. Once, about seven years ago, my family and I tackled the side yard that was overgrown with weeds, some taller than the kids. My husband turned over the dirt, and I added the soil conditioners. Each child chose their own plant to grow and tend. It was a phenomenal success! We had fresh, homemade zucchini bread for months. We repeated the experiment the following year. It became quite the source of pride for us. In fact, our wonderful little garden was still going strong the day we moved to our new home.

Then, there were the normal adjustments in a new house that took my attention away from gardening. Then, the front yard needed attention and landscaping. One year, we were able to get the weeds cleared away in the side yard, but we discovered it was too hot and too late in the season to do much else. And finally, CFS hit and hit hard.

And yet, the desire to garden never went away! It was on my list of things I used to love and couldn't do any more. I mourned it. Until this year, when I decided that I was going to have my garden, dang it! I just had to get a little creative.

So, here's my garden! A ceramic container with Patio cherry tomatoes (bred specifically to grow in a pot), basil, and sage. I have two water globes so I don't have to water every day. No hoeing, no weeding, no energy to expend. My CFS garden! I am so proud of myself! I drag my kids out to "look at my garden" every couple of days. I show them the little blossoms on my tomato plant. I point out the new growth on the herbs. The teenagers roll their eyes; the little ones help me refill the water globes. And I count down the days until I have those little cherry tomatoes, still warm from the sun, to pop into my mouth.

Ulterior Motives

2009-04-30T16:43:00.000-07:00

I think all the comments that I received from my last post reveal my ulterior motives. I posted my experience because I was hurt, and I just knew that you would all be my shoulder to cry on. You did not disappoint, and I wanted a special post to just say thank you so much. I am blessed to have such an amazing, wonderful group of friends to help me through this thing.

Thank you, thank you, thank you!

Tipping Point

2009-04-29T11:06:00.000-07:00

I had an experience last night that normally would be too painful and personal to share -- except that I know that many of you have been here before.

My husband and I met with our very well-intentioned ecclesiastical leader. He wanted to know what he could do to help our family, and he was also there to counsel us on what improvements we could do, as well. I must say, he approached the meeting with love and concern. This is a very good man, whom I love and respect as well. He is not, however, very well-spoken -- he's a man who has worked the land all his life, so he can be a pretty blunt.

He encouraged us to set stronger boundaries and responsibilities for our children. He told my husband that, although he works hard starting up our new business, he can't take it easy at home. He needs to be the enforcer and work alongside the kids to keep their feet to the fire. All very welcome advice, I must say!

Then, he told me he was going to likewise be blunt with me. He said, "I know you have a problem. Get over it."

What?

I tried to explain that I have a medical condition, and that I have been trying to "get over it" for the last two and a half years. He kept repeating, "I know you have a 'problem'" but would not actually concede it was a real medical condition. He then went on to tell me stories about people who defied modern medicine and were healed -- a girl who was told she would never walk, who walked; and then she was told she would never run, and she ran. A boy who had asthma so bad that he was tented three times and his parents were told there was nothing more to do for him who eventually went on to play varsity basketball. A woman who had double vision but taught herself how to play the piano.

Would he have told me to "get over it" if I had MS? Or cancer? Or a stroke? If I were a paraplegic, would he tell me I could get up and walk -- if I only had enough faith?

My shock and disbelief overshadowed one bit of counsel that was actually appropriate: he suggested that I not allow my "problem" to consume my attention, my focus, and my life.

What if, instead of buying into the stigma that people with CFS are lazy, crazy, or depressed, he had been informed about CFS? Maybe he could have counseled me to set priorities and be aware of how I use my precious "good" hours during the day (well-needed advice, I must admit; I can waste time sometimes). Maybe I would have left with some ideas that would strengthen me as a wife and mother, that would bless our family. Maybe I wouldn't have come home and cried myself to sleep.

So, I have been nervous about starting my e-mail campaign for ME/CFS Awareness. I know that this is exactly what I am opening myself up to. But, this is the tipping point for me. Good people like this man need to be aware of what this disease is and what it does to people. I believe it is just like "Horton Hears a Who" -- if enough of us raise our voices, then maybe, just maybe, we'll be able to finally pierce the surface of ignorance and we will finally be heard.

Sweet Things

2009-04-27T11:16:00.000-07:00

Cute things my boys said the other day:

Gabriel, age 8, was pondering the other day and told me, "You know what's weird, Mom? Even though you have chronic fatigue and are really tired all the time, you're still really nice!"

Gavin, age 7, took in some bottles to recycle for Earth Day. As a reward, they gave him a coupon for a frosty at Wendy's. He told me he was going to bring in another bag of bottles to get a coupon for me -- "Because they have chocolate, and chocolate is good for your chronic fatigue!"

Oh, I love those boys!

Activate!

2009-04-22T10:27:00.000-07:00

Alright, I know that many of you are interested in helping out for ME/CFS Awareness Day coming up on May 12th. Here's a really simple thing that you can do to be an activist now! This is from Renee's blog:

"Please visit Kerry at Lemon-Aide to find out how you can advocate for more CFIDS/ME research by the CDC. They are holding a conference on CFIDS April 27th. It only takes a couple of minutes to go to the site she lists, fill out the form and send it off to the CDC. Thank you for making your voice heard. "

I did this, and it is set up so it only takes a few minutes. A few minutes to make such a difference! Please make it worth your time.

It's hard to see above, but the link is: http://www.lemon-aideonline.com/?p=144

Achievements!

2009-04-20T09:38:00.000-07:00

First of all, I am very happy with the progress I am making on my website! I wanted to do one page per week (resulting in at least 52 pages by the end of the year), and I'm already at 39 pages! More importantly, I just completed a section for ME/CFS Awareness. Please take a look and tell me HONESTLY what you think. I can always edit it if you find any flaws or have suggestions, which I would appreciate. You can find it here:

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

I will be using this information in an e-mail campaign I am trying to get my courage up for. I'm going to send an e-mail to all my friends, family, and acquaintances that explains my situation and asks them to do three things: 1. Read the "Understanding CFS" article on my website; 2. Donate $1 to CFIDS.org; and 3. Forward the e-mail to everyone they can. I have given myself a deadline of May 1st to do this, so I can tweak the website a little more and compose the e-mail. Really, I'm just nervous, so I'm buying time. If I get my courage up, I'll do it earlier.

I'm about on track with my recipe blog, The Flagging Chef (see sidebar). I have 86 recipes, and I have a slew more that I'm ready to post. I've put together three weeks of recipes and shopping lists, and I'm working on one more today. That should give me a full month's worth of healthy eating without all the trouble of planning.

I've started a new series of stretches that is helping with my chronic pain. I'm also going to start a tiny bit of rebounding today before my rest period. I'll keep you up to date with how that is going.

So, I'm giving myself a pat on the back today! And who doesn't need that once in a while, hmm?

Exercise Experimentation

2009-04-16T15:49:00.000-07:00

I know that the very thought of exercising causes fear to strike the hearts of many people with CFS. However, I think that it is important not only for overall health, but it may help in CFS recovery. So, I am on a quest to discover how to fit exercise into my daily routine in a way that will NOT make me crash and lead to a post-exertional malaise.

I already do morning yoga, and I tolerate it very well. I wake up sore and achy, so I love the stretches to get the kinks out. It's a wonderful way to start my day!

I am going to add a tiny bit of aerobic exercise -- I am going to rebound (mini-trampoline) for 5 minutes. (Actually, it is a one minute warm-up, then three minute bounce, then a one minute cool-down.) I have read that it is better to try to work out in the afternoon rather than in the morning, so I am going to schedule it around my afternoon rest.

So, here's the question -- do you think it would be better to exercise before my rest, or after? Should I be well-rested before I begin, or would it be better to rest to recuperate? Does anyone have any experience with this? Or do I need to try it both ways and report my results?

Wish me luck!

Because I Believe

2009-04-12T13:15:00.000-07:00

Another loss today ... surely this must be the last, because there doesn't seem much more to lose.

I awoke this morning to the sounds of my little ones searching the house for their Easter baskets (the Easter Bunny always hides them). I used to get up with them and watch them frantically search; this time, I lay in bed and listened. I could picture them in the kitchen when cabinet door after cabinet door slammed shut. I heard the garage door open and close. I could hear them rustling through the living room. I recognized a note of impatience and frustration as they found their brother or sister's basket but not their own. It was delightful to hear! I love such family traditions.

After baskets were found and breakfast was eaten with a rare dessert of chocolate, they scurried about getting ready for church. My girls put on their new Easter dresses and came into my room to prance in front of my full-length mirror. My boys came in to ask for help with their clip-on ties. It wasn't until they were ready to leave that they noticed I was still in bed. "Mom isn't going?" they asked, then came over and gave me a kiss on the forehead.

It wasn't until I heard the front door close and quiet fell around the house that the tears started coming. This was the first Easter that I wouldn't be sitting with my family during Easter services.

Something else this disease has taken from me. Something else I have finally let go of and surrendered to the disease. But, you know what? I know what my family will hear. It's the same story I've heard ever since I was a child. It's a story that is written on my heart. I know it, and more importantly, I believe it. I believe that Jesus Christ was resurrected, and I believe someday I will be, too. So even though today I lie in bed with a broken down body, I know that it is only temporary. Some day I'll be healthy and vibrant and complete, never to know pain or sickness again.

I can wait.

Lurking Symptoms

2009-04-08T18:35:00.000-07:00

You know, when I first started experiencing CFS, I wasn't even sure I had enough symptoms to qualify. I had the fatigue, cognitive problems, and headaches. Were my lymph nodes sore? I didn't know -- I had never really paid attention to lymph nodes before. How about a sore throat? Everyone gets sore throats, right? Were the ones I experienced "frequent" or normal? Was I experiencing "post-exertional malaise"? Who knew? I felt like crap all the time; how can you quantify if it was actually worse after exercise or activity?

As I've settled into this disease, I am now able to recognize lurking symptoms. They may be overshadowed by the major symptoms I experience, but now I know they are there. Yes, I get frequent sore throats, but more importantly I recognize them as a warning signal -- I overdid it the day before, and now I need to take it easy. Maybe the joint and muscle pain I feel in the morning isn't just from getting old. Hey, my lymph nodes do bother me from time to time! Plus, I'm sensitive to cold and I get night sweats; I'm sensitive to light and sound; I have itchy eyes, eye spasms and tinnitus; I have a whole heck of a lot of cognitive problems; I have dizziness and neurally mediated hypotension; and I have TMJ.

So, yes. I guess I do have CFS after all.

Is it Cancer -- Or Wishful Thinking?

2009-04-06T12:37:00.001-07:00

Can undiagnosed skin cancer cause chronic fatigue? I've noticed I have several suspicious-looking moles. It's not surprising -- I've had palish skin since I was a child. I grew up in Southern California before sunscreen was heard of. As a teen, SPF 8 meant you were a wimp! Sun tanning oil was the rage. Every summer, I would get my traditional sunburn, which would then peel off and allow me to tan. I am a prime candidate for skin cancer!

So -- is it possible that I really don't have CFS at all, but instead skin cancer? Then, all it would take is getting rid of a few moles, maybe a little chemo (which they say is about as bad as CFS, anyway), and then voila! I'm all better!

Do we all have these fantasies? Is it denial?

ME/CFS Awareness

2009-04-02T14:43:00.000-07:00

ME/CFS International Awareness Day is coming up May 12, 2009. This is the first year that I've become aware of this, and I am definitely going to want to participate! There seem to be a lot of activities you can do to raise awareness with your elected officials and community. I'll post about the things I'm doing as I do them.

There, now it's out there, I'm committed! That should keep me from procrastinating, right?

The Duel

2009-03-31T16:06:00.000-07:00

I have two opposing symptoms that love to drive me nuts! First of all, I'm sensitive to cold, and I feel cold ALL the time! I wake up with frozen fingers and toes. I'm chilly all day long. I need the windows closed from early afternoon on. I'm cold!

However, I also have night sweats. A couple of times every night, I break out in a terrible sweat. This leads, of course, to the nightly duel. I start out comfortably snuggled under the covers as I fall asleep. Then, I'm tossing them off trying to get relief. This leads to shivers and reaching for the tossed blankets ... until I can't stand them and they're off again!

Is this why I never feel rested? (One of the many reasons, I know!)

Weary

2009-03-28T10:35:00.000-07:00

Sometimes, I wake up in the morning, and I already feel weary. I lie in bed, watching the day's tasks dance through my mind, and I cower. How can I possibly face each one of those, feeling like I feel right now? Maybe I should stay in bed. And I do. For half an hour, maybe an hour. But lying in bed makes my back ache and my neck and shoulders hurt. I know that a little yoga will feel good. Can I at least tackle that? Of course, I get started, and like a boulder rolling downhill, the tasks come at me and I get them done somehow.

This disease is like an abusive boyfriend, and I'm the stupid girl who is crazy enough to stick with him. I walk around on eggshells, afraid to do anything to piss it off. Then, when it hits, I blame myself. I shouldn't have walked to the mailbox today. I should have had the kids help me bring in the groceries. Why did I do that extra load of laundry? I shouldn't have lingered fifteen minutes after my show was finished before going to bed. Normal things that normal people take for granted, and they can't believe the consequences are so severe. It's not right, they think. Why don't I just snap out of it, get over it?

Ah, they just don't understand. I would leave him if I could. Really, I'm not getting some kind of sick pleasure out of this. I would leave in a heartbeat! I just don't know how.

Working Girl

2009-03-25T15:28:00.000-07:00

I'm back in the store today. Once a week, I give my husband the day off and I cover for him here in our mattress store. We chose Wednesday, because it is typically the slowest day of the week. He's the expert; I'm just holding down the fort for the few unlucky people who happen to wander in while he's gone. (I'm actually pretty good, considering I'm a complete novice in the mattress industry.)

Not surprisingly, my one day work-week poses a problem for me. It takes me out of my normal routine, and it requires more exertion from me than I am used to. You would think that with all these mattresses around me, I'd be able to take advantage of them and still get my rests in. However, I'm a bit paranoid. I just think it would be so unprofessional for a customer to walk in and find me napping in the corner.

Today, I think I've finally figured out a reasonable compromise. My husband bought a funky ergonomic chair that lets you recline substantially. I think I can get several 10 minute rests during the day here at my desk using that chair. I tried it once this afternoon, and it was really refreshing.

Any suggestions on how to make it through work without causing too much damage?

Surrounded by Wonderful

2009-03-23T19:03:00.000-07:00

Today I am celebrating my support system! I've been reading a lot lately about the horrible stigma that comes with CFS, and I am so happy that I have wonderful people in my life who not only believe me but will do anything they can to help me recover.

First of all, let me say that one of my largest conundrums has been whether or not I should be going to church. Our church starts at 9 am. There are three meetings that are about an hour each: first, a meeting with the family to take the sacrament, then Sunday School, and then a meeting with the women. I teach once a month the third hour, when just the women meet together. I love church! I love the things that are taught -- I feel fed when I come home. I love teaching, especially when a really good discussion gets going. I feel enriched. I love my friends who are there. But (or should I say BUT), it wipes me OUT! It throws my schedule off completely. I usually come home and nap for two to three hours, which means I don't get to sleep until late that night. I have to pace well on Saturday to conserve energy, and then I have to take it easy Monday and Tuesday to recuperate. I feel like it is physically sabotaging my recovery.

So, my first celebration is my wonderful husband who came up with a plan. After watching me struggle with myself for a few months, he suggested I try to come only for the third hour. I can still take the sacrament first, and then slip in to the women's meeting. I won't have to kill myself trying to get up and ready by 9 am, and just one hour should definitely be manageable. I'll still stay home on those days when I'm not up to going, but this should keep me from feeling alienated and cheated out of something I really enjoy.

Second, I am celebrating those wonderful friends from church! I was absolutely miserable on Sunday. It was one of those days where I shouldn't have gone, but I wanted to be there, so I forced myself to go, and then realized I should have been more judicious. After the meetings, a couple of my friends asked me what they could do to help. You've been there, right? What do you say? I told them there wasn't really anything to do, of course. But they didn't stop there. They pressed me, saying there had to be something that would help. I joked that they could discover a magic pill that would make my kids keep up with their jobs. That led to more probing and I eventually admitted my deep, dark secret: the house is a mess. Not just the clutter that builds up when you have kids that aren't keeping up with their jobs, but two years of filth that accumulates when you can't do the big jobs like mopping the floor and washing windows and cleaning the oven and scrubbing the tub. And, just like that, they said they were coming over to clean my house.

Have you ever done that? Have you ever let someone help you ... I mean, really help you? I am scared and in awe.

Coming Up for Air

2009-03-21T14:40:00.000-07:00

I feel like I'm finally coming up for air! The past two months have been draining. I overdid it around my birthday ... learned a lot from that. It seemed like I wasn't bouncing back very quickly. Then the time change hit, and I just didn't adjust very well to it. Again, I learned a lot. I've been extra gentle with myself, and I think it is beginning to pay off.

What is this strange emotion I'm feeling the last two days? I think it is Hope. Do I dare say it out loud? I am hopeful that I am beginning to recover! I'm not expecting to wake up one morning and find CFS is gone, like some bad dream. I just feel like my understanding is growing and I am putting good habits and practices in place and I am moving toward getting better. I believe that I can, over time, gently push back the limits of this strange disease and find some breathing room. Some room to live.

The Results Are In

2009-03-11T11:11:00.000-07:00

ATTENTION SHELLI -- Read this post the next time the time changes!!!

Throwing off my schedule is WAY better than getting myself into a sleep deficit!!!

Yesterday was awful! I felt miserable all day long. I certainly tired myself out by bedtime, but it didn't help me fall asleep any better. I definitely slept hard all night; I remember waking a few times, but I went right back to sleep afterward. I didn't wake up until 9:30 am today -- that was a full 12 hours (mildly interrupted) of sleep! And, I can still feel the deficit. I'm going to need to take it easy for awhile longer, probably through the weekend.

How I wish some of you could have been a fly on my wall at 6:30 am yesterday morning to buzz in my ear, "Don't do it, Shelli! No, don't!"

On the happy side: I had such a nice day with my kids yesterday! My 8 year old son was showing me how to be an Avatar -- he is so creative, I just laughed at his antics. My 17 year old daughter found a way to get me talking about when I was a teen. My 15 year old son came in my room right before bed (my bedtime is earlier than his, how funny is that?). He was in a hilarious mood, and I really enjoyed him.

AND -- I'm on my way to the spa in a couple of minutes! Full massage, salt scrub and body wrap. Once again, thank you to the world's best husband ever!!!

Daylight Savings TORTURE Part Deux

2009-03-10T15:45:00.000-07:00

I'm posting so I can remember what to do the next time the time changes.

Today, I tried something different. I woke up at 6:30 am and couldn't get back to sleep. So, instead of tossing and turning and finally dozing until 10 am, I decided to just get up.

I am super drowsy and dragging all day! My rests were barely helpful, and I woke up with the infamous eye twitches that tell me it's not so good. I have a couple of errands to run this afternoon. I'm keeping dinner light, and then I'm going to bed an hour early.

I'm a scientist at heart. Here's the experiment: will toughing it out and feeling sleepy all day help me to sleep better tonight and adjust any quicker? Or would indulging in the mornings help me transition a little gentler, in spite of the chaos it creates with my schedule? Ah, we will see. We will see.

PS

2009-03-09T13:50:00.000-07:00

I thought this was too funny -- when I went up to take my rest, I discovered that I had already made my bed! I wonder when I did that?

I Hate the Time Change!!!

2009-03-09T11:14:00.000-07:00

I hate the time change! I'm even going to go out on a limb and say that I personally believe it CAUSED my CFS! (OK, maybe the dates don't really match up, but it is still my official scapegoat.)

I followed my normal routine yesterday: took my rests when I was supposed to, went to bed at my normal time, fell asleep reasonably fast. I think I slept pretty well last night.

Then, I woke up at 6:11 am. A full 39 minutes before I need to. I couldn't get back to sleep! I got the kids up at 6:50 am, and I thought I'd slip back to sleep then (my husband takes over from there). Nope -- still up at 8 am. I'm about to cave and get up, when I finally drift back to sleep. Then in and out of sleep, not peacefully, until it's 10 am, and I have to drag myself out of bed or I am So Out of Luck (that's what the acronym stands for, right?)! To heck with yoga and even making my bed. I'll worry about the bed after my first rest.

Ugh! I am dragging and miserable! My eyes are twitching already -- never a good sign! I have been typing nonsense words while trying to get this post out; I've had to go back and erase three or four already. I feel a zombie day ahead of me. I can hardly wait to get to bed tonight. Just nine and a half more hours to go!

The Price of Overconfidence

2009-03-06T14:03:00.000-08:00

I was thinking about the phrase "bill of health" and it made me think of the tab I ran up yesterday.

1. I worked at the store all day yesterday. I only had two customers, so it was pretty quiet. I realized by the end of the day, I still felt pretty good! I was feeling pretty confident. (cha-ching)

2. I then went to my book club. I love my book club! The books we read are so interesting, and even if I didn't like the book that month, the discussions are always so fantastic. Unfortunately, we had a small group, so the discussion was a little tepid this time. It wasn't as fun as usual, but we got out of there a little early. I was still feeling pretty confident. (cha-ching)

3. I came home and unwinded by curling up on the couch and watching "Survivor." It's pretty mindless entertainment. I was thinking I should probably get to bed when it was over, but I convinced myself to stay up for "The Office" next. Then, I stayed up for "30 Rock," even though I don't really even like that show very much. A little voice started a warning. Regret was waiting on the sidelines, tsk tsking. (cha-ching)

4. I thought I'd put my post-exertional malaise theory to the test. I was still awake when my daughter came home late from work, so I chatted with her about how her day went. I ended up getting to bed about two hours past my usual time. (cha-ching)

And ... boy am I paying for it today! I was lying in bed dreaming this morning that it was getting later and later and I needed to get up, but fatigue weighed so heavily upon me that it was like I was in a coma and could not even force my eyes open to check the clock. I was finally awakened by the telephone ringing at 10 am. On my good days, I'm up at 7 or 8 am after nine to 10 hours of sleep. I languish in bed for a little while, but I don't feel sleepy. I panic if I'm not up by 9 am; that usually means difficulty getting to sleep that night. This time, it had been over 11 hours, and I still felt groggy. I was achy all over, I was dying of thirst, and there was just a hint of a sore throat. I wasn't even up to my morning yoga, and I didn't make it into the shower until noon.

Thank goodness it's Friday! At least I can get all the rest I need to bounce back tomorrow without having the alarm going off for school. I hope I'm feeling better, because Vons is having a really good sale tomorrow, and I would like to be able to feed my family.

Post SEX-Ertional Malaise?

2009-03-04T18:12:00.001-08:00

(Hmmm ... couldn't find an appropriate picture. For the best?)

My husband and I were considering this question. Could ... intimacy cause post-exertional malaise? I mean, it is certainly the most aerobic of any of my current activities. Could it be sabotaging all my careful efforts to pace and monitor my activity levels?

Of course, the benefits are substantial: it relieves stress; it boosts immunity; it burns calories; it improves cardiovascular health; it boosts self-esteem; it reduces pain; and it HELPS YOU SLEEP BETTER! (from WebMD)

Maybe it's like dark chocolate when you're on a diet -- it's so good for you, the calories just don't count.

Perhaps I should just keep an awareness in the back of my head and try to adjust my other activities to compensate. I really don't think I'm going to formally "pace" this one; too much scheduling takes the spontaneity and fun out of it.

Like I told my husband the other night, this is one thing I am not willing to sacrifice to CFS. The response from my so very supportive husband? "Me, neither."

Friday Night Lights

2009-02-28T19:23:00.000-08:00

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

2009-02-27T15:45:00.000-08:00

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

2009-02-24T21:08:00.000-08:00

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

2009-02-23T12:48:00.000-08:00

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

2009-02-20T12:24:00.000-08:00

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?

2009-02-15T10:41:00.000-08:00

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

2009-02-14T11:20:00.001-08:00

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

2009-02-12T10:51:00.000-08:00

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

2009-02-11T11:11:00.000-08:00

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

2009-02-09T11:17:00.000-08:00

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

2009-02-04T09:57:00.000-08:00

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!

2009-02-03T13:43:00.000-08:00

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

Good Things

2009-01-31T10:03:00.000-08:00

On this last day of January, I am here to celebrate good things!

First, my circling shark turned out to be more of a goldfish. With sharp teeth, I mean. It had a little bite, but it wasn't nearly as dangerous as I had feared. I took things easy, I was gentle with myself, and I bounced back surprisingly quickly. Yay!

Second, I actually hit a lot of my goals! I added a few good links and two actual pages to my website. I cleaned it up a bit and tweaked my key words. Plus, I have tons of good ideas to work with, and I'm feeling motivated to work on it. I checked my stats, and it looks like traffic is picking up! It's very exciting.

Third, I completed enough research to actually START MY NOVEL! Yes, I put pen to paper and actually began to write. I'm afraid I'm not going to be able to share it with anyone, though, not even my husband. I'm feeling a little protective of it, and I can't handle any criticism. I believe the fear would stifle my voice, and I wouldn't be able to write effectively. That's hard, though, because another part of me is yelling, "Look at me! Look what I've done! Validate me!" I think I'll let the fear win out this one time.

Fourth, I've added tons of good recipes to my recipe blog. I feel like I'm getting a good variety of meals that seem to be really easy to fix. I can't wait to try them all.

Fifth, I'm taking good care of myself right now! I'm pacing. I've skipped a lot of TV at night, so I'm getting to bed at a reasonable time. I've done three weeks of menus from my recipe blog, so we've had a lot less processed or fast food. I've kept up on yoga, and I've really enjoyed my belly dancing! I seriously haven't lost any weight, but I haven't gained any, either. And I feel good! That's the ultimate goal, anyway, right?

Ah, yes, challenges await, but for the moment, I'm basking in the warmth of good things!

The Circling Shark

2009-01-27T09:57:00.000-08:00

I woke up with a sore throat this morning. I know what that means. I swear, I've been listening to my body tell me that I'm overdoing it again. I've slowed things down and taken it easy. It's just that as a mom and new business owner, there are things that HAVE to be done.

I worked all day Thursday, even though I had had two bad nights and woke up twitching (my "tell" that I'm maxed and need to recuperate). Rom had a delivery, so I ended up going in on Friday -- not much chance to catch up. Saturday, we went over my son's disappointing semester grades and sat down for a homework session. I taught my lesson in church on Sunday -- rewarding, but exhausting. Rom had a warehouse run and two deliveries yesterday, so I was back in the store. Before that, it was pulling teeth to get my son to sit down for another homework session. Plus, my daughter had to finish up a science fair project that was due ... earlier that day. Drip, drip, drip -- each one a little drop of blood in the water.

So, I'm not surprised the shark struck today. I'm getting sick. I can barely keep my eyes open, but I know I can't get back to sleep. I need to eat, but nothing sounds good. I think I'll spend the day relaxing with a good book. Maybe a peanut butter sandwich and some chocolate would help. Yes. Lots of chocolate.

Support at Last!

2009-01-21T10:13:00.000-08:00

A couple of weeks ago, as I contemplated the New Year, I was talking with my husband. I had finally gotten my head around the fact that CFS just might last for awhile -- and I told him, "I need to learn how to live with this." He answered, "No -- WE need to learn how to live with this." What a loving thing to say!

True to his word, we had a family council a short time later. We explained CFS to the kids more completely than before, and we let them ask questions. I told them what to expect and how to read the signs that I'm not doing well. We let them know that this is probably going to last a long time, and it was time to stop waiting for it to "just go away." We pointed out the way they have been taking advantage of my CFS symptoms -- like not finishing jobs because I'm too tired to hound them about it, or twisting my words because I can't remember anything. We let them know what kind of expectations we would have from here out.

Has it helped? Well, I'm not going to say everything got better over night!!! But, now my little boys aren't throwing fits to get my attention when I'm zoned out -- they are recognizing it as CFS, not indifference. The jobs have been getting done a little better. My oldest is offering to run a few more errands for me, willingly. There's a gentler attitude towards Mom these days.

The most amazing thing of all, I think, is a gift from my middle child. My two oldest have to get up very early -- 5:30 am. Waking them up every morning is torture for me, because it interrupts my precious sleep and I never know if I'll be able to get back to sleep after it. I definitely attribute it to exacerbating symptoms when I'm not doing well. Well, my 13 year old asked if it would help me if she set her alarm and started waking them for me. What an amazing offer from a teenager!!! I accepted, and that first week was heavenly! I figured she would try it for a week and then discover it was too hard and not worth it. So, when I approached her about it, she said, "No problem, Mom -- it's really easy for me to do. I don't mind it at all!" So, she's still doing it! Cheerfully! Amazing. Just amazing.

Maybe that's why this January has been so refreshing for me. I feel like a huge weight has been lifted off my shoulders, and it is because I am no longer carrying this burden alone. I feel like I can work on getting healthy without my family unwittingly sabotaging my efforts.

Dang. I feel good!

Back to Work: Goal Setting

2009-01-14T13:34:00.000-08:00

I almost titled this post Goal Setting for 2009, but I don't want to dictate my entire year right now -- just set some goals to get me started in the right directions.

I am off to a really, really good start! I discovered something important over the holidays -- I am a worrier! I never knew that, because I don't lie in bed at night thinking over all the things that could possibly go wrong with me and my family. No, this is new since I've had CFS. Whenever I have a big event coming up, I fret terribly about how much it is going to wipe me out. All that stress and anticipation on top of the actual event exhaust me way more than it really should. This is good information to have. It means that I need to be careful not to plan too many big events, and when I do, I should keep realistic expectations and not FREAK OUT!

So, back to my goals: I am using the tools on my website, Chronic Fatigue Community. I am eating healthy again. I'm using menus to plan healthy meals. I'm exercising better. I've increased my yoga a little, and I've started belly dancing! There's a great program on Fit TV that breaks it down into 10 minute segments. It has a nice, slow pace, but it picks up when they put all the steps together. It seems perfect for me to not overdo it.

As for my projects, I've decided I need to get focused. I will add one new healthy recipe to my recipe blog, The Flagging Chef, every day (averaged -- I can cheat and post several at once to meet my goal). Also, I will complete one new page for my website every week. I have so many great ideas, things that will help me by writing them down. I'm also hoping to share what I've learned with others in cyberspace who may be experiencing serious fatigue.

Finally, an announcement -- I am going to write a novel! While I was on my 3-day trip with my husband, an amazing idea came to my mind. I've always wanted to write a book, but I've always thought my life was too boring to write about. Now, I finally have a very interesting, workable idea. I have some resources for research, and I'm excited! I don't really know how to quantify it yet, so my goal will just be to work on my novel every week.

It is interesting how CFS seems to spark a level of creativity that hadn't been tapped into yet. I've seen this on other CFS blogs, too. I'm excited! Wish me luck, and keep me in your prayers.

This Is My Brain on CFS

2009-01-03T13:45:00.001-08:00

I have a confession. I am a certified, Mensa-qualified genius. Out of eight kids in my family, I was the smart one, the one who always did well in school. I tell you this not to brag, but as a point of reference.

This is something you do not hear about very much about CFS. We call it the weird brain thing, or just my crazies. The first thing I noticed was having a difficult time recalling names, even with people I've known and loved for years. Then, I started forgetting things on my short mental shopping list. It really freaked me out when I was driving to a friend's and I took a really weird, out of the way left turn. It took me a minute to figure out where I was going.

It's pretty commonplace now. I've left the shower with only one leg shaved. I've forgotten to shampoo before conditioning. I've wandered to the pantry only to stand there, wondering what I could have wanted so badly I'd leave my steaming hot chocolate on the table. Last night I forgot to put my pajama pants on -- walked to bed with just a short shirt. Thank goodness I've never left the house that way! My kids and I play a game called, "Guess what Mommy's really trying to say." Does "Put your clothes in the dishwasher" mean "Put your clothes in the laundry" or "Put your dishes in the dishwasher"? See, it's an adventure! You just don't know.

So, we laugh. I let my husband and kids tease me. It's probably good to be humbled about something you've always taken pride in, anyway. It makes my "lucid moments" all the more worth celebrating.

Hallelujah, It's a New Year!

2009-01-01T11:26:00.001-08:00

Yes, I survived the holidays! We finished a most trying and difficult 2008 in the best way possible -- my husband took me to San Diego's Gaslamp District for a three day get away to celebrate our 20th wedding anniversary. For three glorious days, we enjoyed aimless wanderings and laziness and uninterrupted idleness. We did a little walking, a little shopping, a little sight seeing, and a little dining. We lounged in our room for hours, reading and watching football games and Project Runway marathons and past Dog Whisperer episodes (there were two TVs in the room!). I took steamy hot baths each night. We went to bed at a reasonable hour and woke up whenever we wanted. I was spoiled beyond reason and it was heavenly!

We came back to town just in time for a big New Year's party with friends and all their crazy little ones. We talked and ate and played Rockband and American Idol on the Wii. We set the clocks ahead two hours when the kids weren't looking and yelled "Happy New Year" at 10 pm with little ones none the wiser. The neighbors thought we were nuts! We got home, put kids to bed, got to bed at a normal hour, and snuggled in to bring in the New Year ourselves.

There is something so wonderful about a New Year! It is fresh and full of possibilities. You come into it with all the lessons of the last year in your back pocket. You forgive yourself and let go of past failings while resolving this year will be so much better!

This is the time for me to make changes. OK, I have CFS, now it's time to learn how to live with CFS. I think it's time to stop waiting for it to just go away. It's time to put into practice the things that will make me feel better, help me get more out of my life, and make me as healthy as possible.

Thank you to all of you who have listened and given me a boost when I've needed it! It feels so good to know you're not alone, that there are others out there going through wha you are. It is nice to not have to learn all the lessons yourself. I wish you all a fantastic 2009!

Bah! Humbug!

2008-12-26T16:46:00.000-08:00

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.

More Like a Thud than a Crash

2008-12-23T12:04:00.000-08:00

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 Hero!

2008-12-19T09:16:00.000-08:00

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, Purging, and Finding Support

2008-12-15T11:34:00.000-08:00

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.

What If?

2008-12-09T21:21:00.001-08:00

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!

Poetry

2008-12-09T12:03:00.000-08:00

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.

My Love/Hate Relationship with Christmas

2008-12-06T14:00:00.000-08:00

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.

Hope and False Hope

2008-12-03T13:51:00.000-08:00

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.

Gratitude Project Day 6

2008-11-30T12:45:00.001-08:00

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!

Gratitude Project Day 5

2008-11-29T09:57:00.000-08:00

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.

Gratitude Project Day 4

2008-11-27T20:12:00.001-08:00

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.

Joy

2008-11-27T11:36:00.000-08:00

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/

Gratitude Project Day 3

2008-11-26T21:15:00.001-08:00

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!

Gratitude Project Day 2

2008-11-25T20:05:00.001-08:00

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!

Gratitude Project Day 1

2008-11-24T19:42:00.000-08:00

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!

One Step Forward, Two Steps Back

2008-11-24T16:48:00.000-08:00

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.