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.

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.

Sweet Things

Cute things my boys said the other day:

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

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

Oh, I love those boys!

Surrounded by Wonderful

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

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

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

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

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

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!!!

A New Look

I've been working on my website, and I decided it needed a makeover! I've chosen a different look and feel. I'd love your comments -- please take a look and tell me what you think!

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

It's a work in progress. I have tons of ideas for adding pages to my website, but hey -- I have CFS! It makes for a slow go sometimes.

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!

Hallelujah, It's a New Year!

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

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

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

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

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

My Hero!

My husband and I just celebrated our 20th wedding anniversary! We didn't go overboard -- I worked at the store to give him a day off, he bought me See's candies, we went out to dinner. I find it less and less necessary for us to produce these big showy displays of declaring our love. And, last night, it became very clear to me why.

He is my hero every day. I really think he has super powers. He shields me from the piercing bullets my kids shoot me. He can dissipate frustration and induce calm with a single hug. He can read my mind and anticipate my every desire. With a single decree, he can change the world (you know, within our household).

He has spent 20 years spoiling me and supporting me and cheering me and encouraging me and making me very, very happy. I think about who I was when I came into this marriage. I didn't even know who I was. He didn't try to create me or mold me into the person he wanted me to be. Instead, he let me become who I wanted to be -- and when I thought that person was out of my reach, he opened my eyes and showed me I was capable of much more than I ever thought possible.

We are still madly, passionately in love! Here's to the next 20 years ... and the next!

Binging, Purging, and Finding Support

Binging: This was the great cookie week-end. When we first moved here 5 1/2 years ago, I started a tradition in our neighborhood. I baked a bazillion cookies and our family delivered them to each home on the street, complete with antler ears and caroling. We did it the first week-end of December to kick off the Christmas season. Our neighbors loved it, and I have continued it year after year. This year, we postponed our cookies until the second week-end, and a few of our neighbors were getting nervous. You see? This is a tradition that we can't let go of.

So, I started Friday evening and continued literally all day Saturday. I baked and baked and baked and obviously overdid it. We have added a couple of dear friends from church, and so the total number of cookie plates I finished was 25. In addition to a few leftover dozens for my own family.

Purging: Sunday, I crashed. I went to church because my daughter was speaking. I left right after she had finished. As I was leaving, tears started welling up. By the time I got to the car, they were streaming down my face. When I arrived home, I was in full force, sobbing uncontrollably for no reason I could put my finger on.

So, I decided to write. Just grabbed a pen and paper and let it flow out of me. Initially, it was meaningless, surface stuff. Then I hit something hard. I connected my invisible CFS to hiding abuse when I was a child. I feel now like I did then -- this seems so HUGE and obvious to me; why can't anyone else see it and do something about it? Why aren't they reaching out to me with tenderness and concern and healing instead of annoyance and continual demands? The worst part? I've told them that I'm sick, but they don't seem to believe me. And I was connecting that to the abuse -- it seemed to reaffirm that even if I had told someone, they wouldn't have believed me anyway.

Finding support: I didn't say anything when the rest of my family came home from church. I let them go out delivering cookies and caroling without me. When my kids asked why I wasn't coming, I told them I wasn't feeling well. I could almost feel the eye rolling -- but I held my ground. I knew I wasn't up to it, so I didn't go.

That night, before bed, I asked my husband to read what I had written. He was visibly moved. He said he was glad I had written, because he had been feeling some of the same things from the kids (the older ones, at least). He has been downplaying my CFS in front of the kids because he hasn't wanted to worry them or freak them out, especially my young boys. He had been thinking that something needed to change, and my writing has solidified that feeling. He said that we're going to need to have a special family council where we explain this disease very clearly to all the children. We're then going to set up a plan where the kids will necessarily take over most of the household responsibilities.

I once asked "What if I never get better?" That thought was terrifying to me, because the idea of going on the way I have been was horrifying. I knew that something would have to change, but I also knew you can't change other people. I certainly didn't have the energy to force changes on my family. My husband, however, has not only the energy but the authority to require my children to change. If he demands it of them, they will respond. I will still need to enforce consequences, but where he leads, we will go.

I am so hopeful! For the first time, I do not feel alone in this. I feel like I am being given permission to heal -- and I don't mean that I'll miraculously recover completely and never have CFS again. I mean that I can pace myself and say no even to church and family and rest when I need to and let myself recover when I crash.

My husband and I celebrated our 20th anniversary on Wednesday. This is the best gift he has ever given me in these wonderful 20 years. This, I can live with.

Delusionary Me

For the last couple of days, I've been wondering -- how do you fight an illness that nobody believes is real? Sometimes, it feels like I'm just being humored. They'll play along with my delusion for awhile, but then they seem to lose patience. Like, when my disease gets in the way of what they would like me to do. I can feel their eyes rolling. But if I ask about it, I get, "No, no, we believe you!"

I would like to pace myself. I would like to determine what I will and will not do. I would like to have rest periods that are respected. I would like to decide what is important to me. I would like to follow the path that I believe will lead to healing. I would like to do it on my own time schedule.

It would be a lot easier if there were people in my life who lifted the burden and filled in the blanks instead of waiting for me to get around to it. It takes a lot of energy to defy people you care about, even at my ripe old age. Sometimes, it's enough to make me doubt myself again. Am I crazy?

Do they have to believe, or is it enough that they love me?