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. :)

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.

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!

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!

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?

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?

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!

Coming Up for Air

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

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

The Results Are In

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!!!

I Think I May Be on to Something Here

Thank you to Jo and Rachel for a very informative discussion on rest. I have been pacing ever since I discovered the technique; however, I have never actually taken scheduled, lying down with your eyes closed rests. After reading their posts and overcoming my fears (what if I fall asleep and can't get back up? what if I'm incapacitated and not around for my kids? what if it messes up my circadian rhythm and I can't get any sleep at night?), I decided to give it a try. So, I have scheduled two 30 minute rest periods into my day. I go upstairs, turn on some classical music, put on my spa sleep mask, set the timer, and REST.

So far, the results have been amazing! My fears were, not surprisingly, unfounded. Most of the time, my mind is still racing (although I try to keep away from worrying), so I don't actually fall asleep. 30 minutes is the perfect amount of time. It cuts off the energy drain and gives me a little bit of a boost. I'll know better this week, but I think it helps me rebound from difficult days a little better. I'm still getting to sleep ok at night. My kids have thus far survived without me for 30 minutes at a time.

I have been trying to develop a wellness program to help me inch my way back to recovery. I think this may actually be a big piece of the puzzle. I'm feeling very hopeful that I have one more tool in my toolbox to manage this disease.

It's A Miracle!

This had better not be a hoax!!! My life-long love affair with chocolate is suddenly not only being validated, but (gasp!) prescribed for my chronic fatigue? There is a God, He has a wonderful sense of humor, and I love it when He sends gifts!

Chronic Fatigue Syndrome Symptoms Reduced By Dark Chocolate Consumption

Good Things

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

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

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

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

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

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

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

Support at Last!

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

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

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

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

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

Dang. I feel good!