Past Fear and Frustration

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. :)

To A Healthy New Year

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

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.

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!

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.

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.

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.

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. ;)

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!

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?

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.

Weary

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

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?

The Results Are In

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

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.

Friday Night Lights

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.