I Fight

There's a moment, when my husband comes to bed after I've already been drifting in and out of sleep for a couple of hours. His movements in the room cause me to stir, to surface back to consciousness. I don't know what he sees, but sometimes he reaches over and caresses my forehead, like a parent would a sick child. It is the only moment when I am truly aware of my suffering, and I turn my face to him, begging him not to stop. Sometimes he continues softly rubbing my forehead, comforting me until I fall back to sleep. Sometimes he pulls me to him, and I am wrapped in his warm, safe cocoon.

When my relapse became so bad that I had to cut out all my remaining external activities, a friend of mine was worried. She said it sounded like I was giving up. What she doesn't realize is that I fight this disease every waking hour.

I fight this disease when the alarm goes off and I stumble out of bed to wake my children. When I referee an argument. When my daughter wants to talk. When my son needs help with homework. When I have to defend an unpopular decision.

I fight this disease when I take my pills and drink my protein drink. When I stretch away the pain. When I rest half an hour longer. When I choose soup for lunch. When I add vegetables to my pasta dish. When I go up to bed while my husband and children are still laughing at the programs on TV.

I fight this disease when I take my lunch outside to enjoy the sunshine. When I see the snow on the mountains. When I notice the first day lily bloom. When I hear the birds through my window, their songs, their dialogues, and the one nobody answers.

I fight this disease with every smile I smile. Every pleasant conversation. Every phone call. Every note I write. Every tear I give in to.

I fight.

Until the moment when I feel my husband's hand upon my brow. Shhh. I'm here. You don't have to fight anymore.

Monty Python Must Have Been Thinking of Me

This looks a lot like my fight with CFS:




I think I'm at the stage of one-footed head-butting.

Too Much, Too Fast

Yeah, I'm probably the only one who has done that, right?

In fact, I bet most of you were expecting this post after my last, highly optimistic post.

What is it about a sudden burst of energy that catapults us into unsustainable activity?  Tsk, tsk, I should know better by now.

Well, I certainly took advantage of feeling a bit better.  Pain has become a bigger issue for me lately, and so I revved up my exercise program a little to counteract it.  Nothing aerobic, of course -- just a bit more stretching and strengthening.  I have to admit, it felt soooo good!  I just should have taken it a little more slowly, and not added quite as much as quickly as I did.

The other problem I ran into was a renewed interest in cooking.  I've always enjoyed cooking -- not every night, necessarily, but I loved trying new recipes and using my lovely family as guinea pigs.  Plus, since  my new haircut, I decided I wanted to lose a little weight to look even more fabulous.  Since I can't exercise my way down to my goal, that means eating better.

I discovered some wonderful freezer recipes, and I could not contain my enthusiasm.  I've made Lazy Lasagna, Ham and Cheese Ziti, Spinach Soup, Chili, Tex Mex Rice Casserole, and Chicken Divan.  (I've got all the recipes on my recipe blog, The Flagging Chef.)  So, now I have eight dinners and seven lunches in the freezer, ready for those nights when I don't feel up to cooking and usually order pizza.  They are all pretty easy recipes.  I did all right on those days I had my kids helping me cook.  I got a little crazy and made the Tex Mex Rice Casserole all by myself, and that was a big mistake.

Add to that a big stressor for me:  We're going to have someone come in and clean once a month.  She came over for an initial consultation on Friday.  I am humiliated by my home.  Back in the day, I took pride in the fact that although my house was occasionally cluttered (six kids, you know), it was never dirty.  Now, once you get past the clutter, it is very dirty underneath.  This is long overdue, but getting started is a horribly emotional ordeal for me.  She starts on Wednesday; I know the payoff will be worth it.

So, I'm not exactly in a crash.  That alone tells me I'm still on the mend.  I just need to remember that the road to recovery is a bumpy old thing.  I need to slow down and scale back a little.  Be gentle with myself.  Have a little chocolate.

Signs

Signs I may be heading out of my relapse:


Thursday, I was able to shop AND cook dinner!  Go me!

I got my hair cut yesterday after EIGHT months!  I feel sassy.

My Life Is Different Now

I suppose that's an understatement.

My CFS was a slow onset case. I don't have a CFS anniversary per se. I have a vague idea that something changed around summer of 2006. And then the changes snowballed. I suppose we all take a look back from time to time and see where we were and where we are. My life is different now.

It has taken me a long time to figure out that different doesn't always mean better or worse. I didn't choose this path. I didn't choose this life. And yet, that doesn't mean that this new way of living doesn't have value.

I think about the fast pace I was living before I became sick. I think about the direction I was heading. As my children were growing older and less dependent, I was moving away from my family and more towards me. I was growing an interior decorating business that showed some promise. I was reaching out more to my friends, becoming more social. I spent a lot of time volunteering at church. I supported my kids in their activities by driving them and being there for sports, scouts, clubs, and school.

When CFS hit, it stripped me of all those activities that comprised my life. There was a void. There was a panic. I had to find a new way to live.

It's interesting to see the pieces I've chosen to include in my new life. I am now anchored here, in my home, in my family. Instead of interior decorating, I am writing. My husband and I snuggle on the couch watching our favorite TV shows instead of spending the evening with friends. My moments with my kids are one on one, face to face, instead of driving in a car or with me as a spectator. I work a lot harder on personal spirituality. I connect with friends here.

Not better. Not worse. Just different.

Once I recover from CFS, my life will change again. I hope I balance the best of both.