Congratulations!

Congratulations to Treya, Sue, Alyson, and Laurel, who each were recognized by Wellsphere in their People's HealthBlogger Awards 2009! It is nice to see our community so well represented. For a full list of the winners, you can go to

People's HealthBlogger Awards 2009.

Cake Wrecks and Charitable Donations

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

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

Visible Illness

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

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



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




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



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

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

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

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

Good News

A couple of good news tidbits:

First, I finished the September issue of my Fatigue Busters newsletter and sent it out! That had been hanging over my head for a week.

Second, I am feeling infinitesimally better! I have to warn myself that I am not back to baseline yet, so I need to ease into it gently. I have these bursts of energy and just want to DO something!

Third, my blog AND my website have both been listed on Worldwide Association for ME/CFS Awareness and Research (WAMCARE)'s website!

http://www.wamcare.org/websites.html
http://www.wamcare.org/bloggers.html

Many of you are listed on the bloggers list, as well! Congratulations!

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?

ME/CFS Awareness: How CFS Affects Me

Yesterday, I blogged about my symptoms. Today, I am blogging about how it has affected my life. That means a trip down the old memory lane. It isn't something I allow myself to do often, because that usually means comparing myself to the "old" me, and that isn't always pleasant!

Before CFS, I was:

An interior decorator
A church volunteer
A gardener
A good homemaker
A genius
An exercise enthusiast
A social friend
A good wife
A really, really good mom
An avid cook
A nature lover
A shopper

Living with CFS is like living inside a box. Most of those things from the "old" me no longer fit inside my box. The things that are most important to me have to be reduxed just to be able to fit.

I am no longer an interior decorator. That was just a fun hobby for me and completely superfluous. I now volunteer one hour a month at church instead of several hours a week. My garden now consists of a single pot. My current exercise routine is about 15 minutes of stretching a day. I am hoping to be able to add 5 minute of aerobic activity soon. I can do laundry. I visit with friends once a month at my book club. I can cook a quick and easy meal a couple of times a week. I shop online. I still love nature; I just haven't visited in awhile!

My husband is a good husband. He loves me and supports me in every way. He has lovingly lowered his expectations.

Here's the hard part. I am no longer a really good mom. You see, being a really good mom is really hard work. You have to be able to set structure and follow through with consequences when it is breached. You have to be able to weather unhappy children. You have to be able to teach them skills to become independent. You have to work with them side by side. You have to be available to them when they need you, not just when you are feeling good. You have to get up pretty early for the little ones and stay up late for the older ones.

Now, don't get me wrong. I still love my children ferociously, and that goes a long way towards making up for faults. But. I can see how much this has hurt my family. I can see that they are a little lost without me. I can see some crumbling around the edges. I can see their yearning for their mom. You know, the "old" me.

Kicking Off ME/CFS Awareness Week!

It looks like ME/CFS Awareness Day (May 12th) has evolved to ME/CFS Awareness Week! Which is nice, because really, most of us need to "pace" our posts anyway, right?

I'm taking Ashy's lead, and I'm going to be sharing what my symptoms are, how they affect my life, and what I am doing to manage this disease.

My Symptoms:

Fatigue (duh!)
Cognitive dysfunction
Impaired memory
Difficulty with word finding
Word switching (always humorous)
Post-exertional malaise (but not severe)
Unrefreshing sleep
Headaches, sometimes migraines that last days
Sore throat, but only when I've overdone it
Night sweats
Sensitivity to light
Sensitivity to sound
Sensitivity to cold
Eye spasms (blepharospasm or myoclonus)
Tinnitus (ringing ears)
Orthostatic intolerance
Dizziness
Fainting
Jaw pain (TMJ)
Weight gain
Muscle soreness when I wake up
Anxiety

My worst symptoms are the fatigue (again, duh!), cognitive dysfunction, and the ever-embarrassing eye spasms! The rest of it is annoying and bearable.

Gardening: CFS-Style

Every year as Spring approaches, I get a sudden inexplicable desire to garden. Not just any kind of gardening -- I want a summer vegetable garden, just like I remember from my childhood. I loved the baby carrots, peas, and beans. I loved fresh corn on the cob grown and harvested from my own backyard. I loved how the zucchini took over more than its assigned mound of dirt. The watermelon was the perfect epitome of summer. And what could be better than tiny cherry tomatoes, still warm from the sun, a juicy burst of flavor in my mouth? Summer has always been my favorite time of the year, and these are the flavors of summer.

I can't say that I was an accomplished gardener before CFS. In fact, we only had a successful garden twice. Once, about seven years ago, my family and I tackled the side yard that was overgrown with weeds, some taller than the kids. My husband turned over the dirt, and I added the soil conditioners. Each child chose their own plant to grow and tend. It was a phenomenal success! We had fresh, homemade zucchini bread for months. We repeated the experiment the following year. It became quite the source of pride for us. In fact, our wonderful little garden was still going strong the day we moved to our new home.

Then, there were the normal adjustments in a new house that took my attention away from gardening. Then, the front yard needed attention and landscaping. One year, we were able to get the weeds cleared away in the side yard, but we discovered it was too hot and too late in the season to do much else. And finally, CFS hit and hit hard.

And yet, the desire to garden never went away! It was on my list of things I used to love and couldn't do any more. I mourned it. Until this year, when I decided that I was going to have my garden, dang it! I just had to get a little creative.

So, here's my garden! A ceramic container with Patio cherry tomatoes (bred specifically to grow in a pot), basil, and sage. I have two water globes so I don't have to water every day. No hoeing, no weeding, no energy to expend. My CFS garden! I am so proud of myself! I drag my kids out to "look at my garden" every couple of days. I show them the little blossoms on my tomato plant. I point out the new growth on the herbs. The teenagers roll their eyes; the little ones help me refill the water globes. And I count down the days until I have those little cherry tomatoes, still warm from the sun, to pop into my mouth.

Tipping Point

I had an experience last night that normally would be too painful and personal to share -- except that I know that many of you have been here before.

My husband and I met with our very well-intentioned ecclesiastical leader. He wanted to know what he could do to help our family, and he was also there to counsel us on what improvements we could do, as well. I must say, he approached the meeting with love and concern. This is a very good man, whom I love and respect as well. He is not, however, very well-spoken -- he's a man who has worked the land all his life, so he can be a pretty blunt.

He encouraged us to set stronger boundaries and responsibilities for our children. He told my husband that, although he works hard starting up our new business, he can't take it easy at home. He needs to be the enforcer and work alongside the kids to keep their feet to the fire. All very welcome advice, I must say!

Then, he told me he was going to likewise be blunt with me. He said, "I know you have a problem. Get over it."

What?

I tried to explain that I have a medical condition, and that I have been trying to "get over it" for the last two and a half years. He kept repeating, "I know you have a 'problem'" but would not actually concede it was a real medical condition. He then went on to tell me stories about people who defied modern medicine and were healed -- a girl who was told she would never walk, who walked; and then she was told she would never run, and she ran. A boy who had asthma so bad that he was tented three times and his parents were told there was nothing more to do for him who eventually went on to play varsity basketball. A woman who had double vision but taught herself how to play the piano.

Would he have told me to "get over it" if I had MS? Or cancer? Or a stroke? If I were a paraplegic, would he tell me I could get up and walk -- if I only had enough faith?

My shock and disbelief overshadowed one bit of counsel that was actually appropriate: he suggested that I not allow my "problem" to consume my attention, my focus, and my life.

What if, instead of buying into the stigma that people with CFS are lazy, crazy, or depressed, he had been informed about CFS? Maybe he could have counseled me to set priorities and be aware of how I use my precious "good" hours during the day (well-needed advice, I must admit; I can waste time sometimes). Maybe I would have left with some ideas that would strengthen me as a wife and mother, that would bless our family. Maybe I wouldn't have come home and cried myself to sleep.

So, I have been nervous about starting my e-mail campaign for ME/CFS Awareness. I know that this is exactly what I am opening myself up to. But, this is the tipping point for me. Good people like this man need to be aware of what this disease is and what it does to people. I believe it is just like "Horton Hears a Who" -- if enough of us raise our voices, then maybe, just maybe, we'll be able to finally pierce the surface of ignorance and we will finally be heard.

Sweet Things

Cute things my boys said the other day:

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

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

Oh, I love those boys!

Activate!

Alright, I know that many of you are interested in helping out for ME/CFS Awareness Day coming up on May 12th. Here's a really simple thing that you can do to be an activist now! This is from Renee's blog:

"Please visit Kerry at Lemon-Aide to find out how you can advocate for more CFIDS/ME research by the CDC. They are holding a conference on CFIDS April 27th. It only takes a couple of minutes to go to the site she lists, fill out the form and send it off to the CDC. Thank you for making your voice heard. "

I did this, and it is set up so it only takes a few minutes. A few minutes to make such a difference! Please make it worth your time.

It's hard to see above, but the link is: http://www.lemon-aideonline.com/?p=144

Achievements!

First of all, I am very happy with the progress I am making on my website! I wanted to do one page per week (resulting in at least 52 pages by the end of the year), and I'm already at 39 pages! More importantly, I just completed a section for ME/CFS Awareness. Please take a look and tell me HONESTLY what you think. I can always edit it if you find any flaws or have suggestions, which I would appreciate. You can find it here:

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

I will be using this information in an e-mail campaign I am trying to get my courage up for. I'm going to send an e-mail to all my friends, family, and acquaintances that explains my situation and asks them to do three things: 1. Read the "Understanding CFS" article on my website; 2. Donate $1 to CFIDS.org; and 3. Forward the e-mail to everyone they can. I have given myself a deadline of May 1st to do this, so I can tweak the website a little more and compose the e-mail. Really, I'm just nervous, so I'm buying time. If I get my courage up, I'll do it earlier.

I'm about on track with my recipe blog, The Flagging Chef (see sidebar). I have 86 recipes, and I have a slew more that I'm ready to post. I've put together three weeks of recipes and shopping lists, and I'm working on one more today. That should give me a full month's worth of healthy eating without all the trouble of planning.

I've started a new series of stretches that is helping with my chronic pain. I'm also going to start a tiny bit of rebounding today before my rest period. I'll keep you up to date with how that is going.

So, I'm giving myself a pat on the back today! And who doesn't need that once in a while, hmm?

Exercise Experimentation

I know that the very thought of exercising causes fear to strike the hearts of many people with CFS. However, I think that it is important not only for overall health, but it may help in CFS recovery. So, I am on a quest to discover how to fit exercise into my daily routine in a way that will NOT make me crash and lead to a post-exertional malaise.

I already do morning yoga, and I tolerate it very well. I wake up sore and achy, so I love the stretches to get the kinks out. It's a wonderful way to start my day!

I am going to add a tiny bit of aerobic exercise -- I am going to rebound (mini-trampoline) for 5 minutes. (Actually, it is a one minute warm-up, then three minute bounce, then a one minute cool-down.) I have read that it is better to try to work out in the afternoon rather than in the morning, so I am going to schedule it around my afternoon rest.

So, here's the question -- do you think it would be better to exercise before my rest, or after? Should I be well-rested before I begin, or would it be better to rest to recuperate? Does anyone have any experience with this? Or do I need to try it both ways and report my results?

Wish me luck!

Lurking Symptoms

You know, when I first started experiencing CFS, I wasn't even sure I had enough symptoms to qualify. I had the fatigue, cognitive problems, and headaches. Were my lymph nodes sore? I didn't know -- I had never really paid attention to lymph nodes before. How about a sore throat? Everyone gets sore throats, right? Were the ones I experienced "frequent" or normal? Was I experiencing "post-exertional malaise"? Who knew? I felt like crap all the time; how can you quantify if it was actually worse after exercise or activity?

As I've settled into this disease, I am now able to recognize lurking symptoms. They may be overshadowed by the major symptoms I experience, but now I know they are there. Yes, I get frequent sore throats, but more importantly I recognize them as a warning signal -- I overdid it the day before, and now I need to take it easy. Maybe the joint and muscle pain I feel in the morning isn't just from getting old. Hey, my lymph nodes do bother me from time to time! Plus, I'm sensitive to cold and I get night sweats; I'm sensitive to light and sound; I have itchy eyes, eye spasms and tinnitus; I have a whole heck of a lot of cognitive problems; I have dizziness and neurally mediated hypotension; and I have TMJ.

So, yes. I guess I do have CFS after all.