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!