Monday, December 27, 2010
I know it's not just me. I have a sneaking suspicion that pretty much all of us overdid it for the holidays.
Christmas is a time of reflection for me, a time for taking stock. What I learned this year is that, although CFS is not supposed to be a progressive disease, it has certainly been progressive for me. Each year, I have gotten worse and worse, and I've been able to do less and less. All I accomplished this year was shopping, and most of that was done online. Even so, by Christmas morning, I felt like I had just run a marathon and could barely crawl across the finish line. I ended up taking an hour and a half rest in the morning and another hour rest in the afternoon, and I still felt miserable well into the evening. I was grateful my family went to my in-laws without me, even while I was sad to miss out on the fun.
I suppose the good news is that I felt much better yesterday, so I didn't stay horribly crashed too long. I'm happy to get back to my regular routine, you know, the one where I'm actually taking care of myself. I love Christmas, but this isn't the Christmas I remember. Once again, I find myself packing it away and saying to myself, "Next year has to be better."
I hope you all had a wonderful Christmas, and that it was a time well worth it! And here's to a healthier New Year for us all.
Thursday, December 16, 2010
My next steps are clear. I had decided on them before I sent my blood in for testing. I have an appointment on January 5th with an Infectious Diseases specialist. I am going to request to begin treatment with the AIDS drugs that have proven effective against XMRV.
I know the AIDS drugs have some serious side effects. I also know that people with CFS have had a really hard time getting on the drugs. It will be a challenge. And yet, I am not wavering.
I've passed the tipping point for me. My quality of life is so negligible that I am willing to try just about anything that offers hope for recovery. I am housebound. I miss out on important events with my family all the time; just yesterday, I was unable to go watch my son tie for 6th place in the school spelling bee. Side effects are not going to interrupt my life, because there just isn't that much to interrupt.
So, what about you? Where is your tipping point? Are you there yet? Would you take the drugs, side effects be damned, if you KNEW you would recover completely? Would you let your kids do it? Or would you wait for science to catch up and offer new, safer treatments?
Tuesday, December 14, 2010
Sunday, December 12, 2010
Not surprisingly, each Christmas since I came down with CFS has been increasingly different, increasingly simple. Now don't get me wrong, simple is a good thing. It scales back all the unnecessary and frantic materialism of Christmas and brings you to the heart of the season.
Yet this year, I kind of feel like it has stripped me of Christmas altogether. I've done my shopping online, and I've almost finished, thank goodness. However, there are no decorations yet. No cards sent. No stories read. No cookies baked. Just a huge to-do list of things that I need to do in an increasingly short period of time.
I feel like I haven't had time to even glance at the sky, let alone find the star and follow it.
Thursday, December 2, 2010
I believe that God led my husband to me.
Seriously. The night we met, my husband had already had a date lined up. But as the day progressed, he started feeling like he shouldn't go. It was a persistent feeling; he thought maybe it was God trying to warn him that he'd get in an accident or something if he went. Reluctantly, he called the young lady and canceled their date. It was the first time he'd ever done something like that.
Now, with no plans for the evening, he had to scramble to find something to do. Some of his friends were going to a church dance that night in Pacific Beach (San Diego). They persuaded him to come with them. He arrived late; it was after 11 o'clock. He made the rounds, saying hi to the people he knew. And then he saw me.
He knew the minute he saw me that I would be his wife. He approached me and asked me to dance. I said yes. :) We danced the rest of the night together. He asked me for my number, and I wrote it on a gum wrapper and tucked it into his shirt pocket so he wouldn't lose it.
The first few dates we had, we talked like crazy. He didn't even turn on the radio during the first few dates (and this is a man who loves music). I had been planning on going up to Utah to go to BYU in a couple of months. He decided he would quit his job and follow me up there. I believe he would have followed me to the ends of the world, just to be with me.
It took him a mere three weeks to convince me to marry him. I changed my plans, stayed home, and we were married December 10, twenty-two years ago. Since that time, I would say that our marriage has fluctuated between really good and freaking amazing.
Why am I going through this story now? Well, I have been participating in ItStartsWith.Us 's Love Bomb project. Each week, I get an e-mail telling me of someone who is going through a hard time. Then I, along with hundreds of other Love Bomb participants, drop by that person's blog and leave an encouraging comment.
This week, the person receiving these Love Bombs is a young woman who has been married for seven years. She has two young children, and she is pregnant with her third. And her beloved husband died just a few weeks ago in a hunting accident.
And suddenly, I'm thinking, I'm OK with CFS. I don't mind it at all. I wouldn't care if it continued to progress until I was in bed, like our dear friend Laurel, or until my eyesight failed, like our good friend Kerry. I would only hope to face it with the courage and hope that they have.
And I'm OK with the financial troubles we've gotten ourselves into. If we went bankrupt 60 times over, or ended up living in our van, I'd be OK with that. And even if my kids get into trouble, struggle with drugs or teen pregnancy or failed grades or whatever, I can handle that. Because I have my husband, that wonderful man who loves me enough to cross any ocean, climb any mountain, or stay by my side through any suffering I may endure.