Cake Wrecks and Charitable Donations

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

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

My Support Sytem: Are You In or Out?

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

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

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

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

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

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

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

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

Being Thankful

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

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

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

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

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

People's Health Blogger Awards

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

The Fear

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

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

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

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

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

Hanging on to Dear Life

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

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

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

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

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

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

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

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

Visible Illness

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

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



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




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



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

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

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

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

Good News

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

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

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

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

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 ...

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

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

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

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

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

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

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

(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

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

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

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 ...

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!

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

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?

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

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

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

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

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!

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

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

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

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

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!

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!

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

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

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

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?

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?