Thursday, May 24, 2007

Taking It Slow

I'm doing much better emotionally and trying hard to recover physically. I have no idea what caused this crash (which is always frustrating to me), but fortunately, the depression only lasted a day.

Thank you for all the supportive comments. When I'm in my "normal", optimistic state of mind, I know logically what causes those sudden bouts of depression, but, somehow, when I'm in the midst of one, I have trouble seeing it logically. I really hate the feeling of having no control...but that's what CFIDS is all about, isn't it?

I have a huge amount of work to do, but I am trying very hard to focus on taking care of myself so I can recover from this crash sooner. I've spent much of the past two days in bed. Lunch with my friend helped tremendously yesterday, as did the flowers my husband brought home for me. I am trying to listen to my body. Instead of pushing myself to keep working through the crash, as is my normal inclination, I am trying hard to rest aggressively (I love the paradox of that expression!) and keep my stress levels low.

Time for another nap.

Wednesday, May 23, 2007

Depression & Obsession

Damn. I knew I shouldn't have announced how good I was feeling. I felt pretty yucky yesterday, getting worse and worse as the day wore on. I practically had to chain myself to my laptop to get a little work done because I was having so much trouble focusing on my current work project. In the afternoon and evening, the darkness began to creep into my mind and emotions. By 8:30 pm, I was feeling so depressed and forlorn that I went to bed early just so that the day would finally end.

But it didn't end. Despite the half-Ambien I took, sleep eluded me. My mind got caught in an obsessive cycle. This happens to me sometimes with a crash. It's worse than any physical pain or discomfort. My brain grabs hold of some tiny dark feeling and obsesses over it until it spirals out of control. In this state, anything can get me going - something my mom said on the phone, some real or imagined slight from my husband - and my mind grabs it like a dog with a chew toy until it seems to take over my whole being. I finally took the other half an Ambien and somehow got to sleep eventually.

Am I crazy? Am I losing my mind? That's how it feels. Yesterday morning, I was filled with peace and gratitude, enjoying the gorgeous weather and feeling satisfied with my life. Twelve hours later, I was a basket case, thinking that my life was falling apart. My husband came home from golfing at about 9 pm, and I pretended to be asleep just because I didn't want to subject him to my darkness. He loves to golf and always comes home on top of the world, and I didn't want to ruin his good mood or, even worse, take out my dark feelings on him.

What's wrong with me? I know, somewhere in the rational side of my mind, that all of this is a biochemical thing, the result of CFIDS-influenced hormonal shifts in my brain. This never happened to me before CFIDS and now it only accompanies other crash symptoms in a predictable pattern. Right? Oh, someone out there, please tell me this happens to you, too, so I'll know I'm not losing my mind.

OK. I'm going to try to help myself. I've made arrangements to meet my closest friend for lunch, so I can try to get out of the house and out of my own head for awhile. First, I'm going back to bed to try to get some more sleep. It's the only thing that will help me pull out of this hole.

Monday, May 21, 2007


I know from all of your e-mails and comments that many people are waiting to hear how I'm doing on my new Valtrex treatment. I've been almost afraid to discuss it for fear of setting myself up to be disappointed (or jinxing myself, as my kids would say!)

I had about a month of feeling pretty crummy, but I hesitate to attribute that to Valtrex. It's not known to cause a "herx" reaction (i.e. an initial worsening due to virus die-off), plus I've had a very stressful month. I've had way too much going on with work, home, and family. My husband and I had a minor crisis which caused a significant amount of stress one week. We've also had trips to visit family and family staying with us - both enjoyable but tiring.

Than came last week, my fifth week on Valtrex. I felt really, really good all week long. In fact, I've now had about 8 days straight of feeling good, and I'm cautiously beginning to wonder if maybe this is a positive response to the anti-viral treatment.

The problem is, of course, that CFIDS is defined by unpredictable ups and downs, so it's always difficult to assess the efficacy of a new treatment. Also, I know that stress affects me quite severely, and last week was the first week in a long time when I didn't feel stressed. So, is it cause or effect? Am I feeling good simply because I'm less stressed or am I less stressed because I'm feeling better? See why I've been avoiding this train of thought??

Whatever the reason is, there's no denying how wonderful this past week has been. It's not only an improvement in my physical symptoms. This past week, I have experienced a clarity of thought and an enthusiasm that has been missing for a long time. It's subtle - something I didn't even realize was missing - feeling sharp and engaged. I'm having trouble putting it into words, but I just feel more like me, like the old me, the real me. It makes me wonder how much of the "emotional" effects of CFIDS (feeling down, lacking motivation, etc.) are really biochemical.

I've always said that I've been fortunate to have only very mild brain fog. Sure, I feel sluggish when I'm badly crashed, but otherwise my only indication of cogntitive dysfunction has been difficulty with word finding (a tough one for a writer!). I wonder now, though, whether my thinking has been more affected than I assumed. Many of the people on the immune support message boards taking Valcyte mentioned that the first improvement they noticed was in their cognitive function. Maybe these mysterious viruses affect us even more than we thought.

So, I'm still waiting and watching but feeling pretty optimistic. Now, don't get me wrong - I'm still napping every day, needing at least 9 hours of sleep a night, and feeling worse if I do too much - but any improvement is welcome.

I went for my week 5 lab tests today and will have a phone conference with Dr. Levine next week. I'll keep you posted!

Wednesday, May 16, 2007

Just Do It!

I've really been overwhelmed the past few weeks with all that's going on - family birthdays, writing deadlines, consulting work, and so many school functions! This time of year is always so hectic.

Today, I finally quit procrastinating - a favorite hobby of mine - and did my part for International CFIDS Awareness Day (which was May 12). Every year, I think I'll be able to participate in the CFIDS Association's Lobby Day, but it always falls at this busy time of year when I have no energy to spare. Fortunately, they've made it easy to help out, even for those with CFIDS who are unable to leave their homes.

Just use this link to go to the CFIDS Association's Grass Roots Action Center.

They currently have 5 different actions you can take from your computer. Each one sends letters to different political and media people to help raise awareness of CFIDS and support greater research funding. The CAA provides the letters; all you do is click a few buttons and add your name and address. You can also add a couple of your own sentences that describe how CFIDS has affected your life.

I just took all 5 actions, sent a bunch of letters, and it took less than 10 minutes! You only need to enter your information once, and you can write your couple of sentences once and just paste them into each letter.

It's FAST, it's very easy, and it really does make a difference.

There have been some remarkable advances in research in the past two years, but it won't go anywhere without additional support and funding. So, do your part. Go now....

Just do it!

Tuesday, May 01, 2007

I Think I Can...

Remember the Little Engine That Could? That story is a perfect illustration of the way that I was brought up. I have always believed that I could do anything I set my mind to, that anything was possible if I only worked hard enough. So, why can't I get well? This has been one of the hardest things for me to accept about being ill - that I don't have control over my body or my life in the way I thought I did.

If a strong will was all that it took to get well, I would have overcome this illness long ago. I want so much to be able to be active again - to exercise, lose weight, rebuild some muscle, have energy for my husband and family, even simply just to take a walk on a beautiful day without worrying about the consequences. I want all of this with every bit of my being, but that's not enough.

Besides a strong will, I've also worked hard to get well. I rest as much as I can, watch what I eat, try to reduce stress. I have no alcohol, no caffeine, no dairy. I limit my activities - social, mental, and physical. I read and research and try everything that sounds promising. But all this hard work doesn't do the trick either.

I do what I can and control what I'm able to. I'm certain all this effort hasn't been in vain. It's what's keeping me able to function as well as I do. I'm not bed-ridden, like so many other people with CFIDS. I still have much to be grateful for. It's just that, some days, I want more. I want wellness and health.

So, I keep trying.

I've been on Valtrex for a week and a half so far. I felt pretty rotten last week, but I was under a great amount of stress. I've had the gastrointestinal problems that Dr. Levine warned me about, but those seem to be easing a bit this week. I have to keep reminding myself that this is a long-term treatment (6 months) and not a cure, but I would so welcome even a little bit of improvement.

I think I can, I think I can....