National Fatigue Survey Launched

I think this may apply only to those in the US. :( Results will be published March 2010. Please let your voice be heard!

National Fatigue Survey Launched

by The Fatigue Management Institute

The National Chronic Fatigue Survey, an internet-based survey of fatigue related to chronic illness, has been launched by the Fatigue Management Institute of Florida Institute of Technology. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue.

The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at:

http://research.fit.edu/fmi

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!

Prevagen Clinical Trial

I wanted to let you know that I've signed up for a Prevagen clinical trial. Prevagen is a supplement that has anecdotally helped people with CFS and Fibromyalgia. The company is now doing clinical trials to see how wide spread the benefits actually are. They are doing a double blind study -- you'll either get the supplement or a placebo. At the end of the study, they tell you which you were given, and if you had the placebo, they'll give you two months of the supplement for free.

They are looking for more participants. If anyone is interested, you may check out their website:

www.prevagentrials.com

Why I Love My Husband

An old boyfriend got in touch with me recently via Facebook. The first thing I did was check my pictures to make sure there was nothing embarrassing posted. Then, I thought, "Good grief! I would die if he saw me now!" CFS has aged me a good 7 to 10 years beyond what I should be, and as you might have gleaned from my last post, I've put on a bit of weight, too.

Well, then I started feeling bad when I realized I don't put too much effort into looking good for my own husband! Doing my hair and makeup tires me. I don't like to waste my valuable energy on it. I save it for Sundays and church. But, I thought, for his sake, I ought to reconsider my beauty routines.

I brought it up to him the other night. I apologized and suggested I should try to do better. His answer? "Honey, I don't want you to change a thing. When people see you looking tired and haggard, the way you really feel, then they start to understand what you are going through. I want more people to understand."

I love this man!

(although, I was hoping he was going to say, "Oh, no, honey, you still look fantastic!" ;) )

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!

Everything Has Its Price

My niece was married on Friday. I loaded all my kids into the van, and we made the 1 1/2 hour ride down to my mom's house for the reception. I thought it would help if I let my oldest daughter drive... it didn't! I visited with my sister whom I haven't seen in two and a half years. We laughed and had a wonderful time. After the reception, it was early enough that we could all go swimming. We ended up hours in the jacuzzi, and I just couldn't bear to tear myself away from the fun. Finally, it was late. My daughter was staying the night, so I ended up driving home myself, in the dark.

I thought I was taking it easy on Saturday -- just a little trip out to the grocery store for much needed food. The evening came, and I had to make a decision: do I go to see fireworks with my husband and kids, or do I get an early night and make it to church the next day? I chose to stay home.

Yesterday, I woke up, and there was just no way I could make it to church. I was aching all over, I was weak, I was emotional. Everything cried, "No way!" My husband took one look at me and suggested I stay home. "But I stayed home from fireworks so I could go!" I said. He told me, "Honey, it doesn't really work that way."

Oh, my wise man. I've learned that everything has its price when you have chronic fatigue. I thought I had the "system" down. I thought I could have my own "cap and trade" program and get away with it. I discovered two great flaws with that. First, I don't know the true cost of an activity until the aftermath actually hits me. Second, I follow my heart and jump into activities that end up really, really expensive.

Is it possible to really listen to your body? I'm still riding the roller coaster, and that can't help my recovery. I'm doing a lot of great things that I think can really make a difference to my health. But I'm always guessing at my limitations, and I am not getting it right. I sabotage myself, I think.

I know why. I hate the thought of life passing by without being able to live it. I know some things only happen once, and then they are gone. I don't want to regret this giant part of my life, especially if it drags on and on and on. I want to steal a slice of normalcy, even though this disease has decided it isn't supposed to be mine.