Managing CFS (Chronic Fatigue Syndrome)

Yesterday I drove over an hour to see a specialist in another city. Just a familiar follow-up visit: Review lab results. Discuss options. Adjust treatment. A bit ho-hum at this point. I nod and smile with very little emotion. It's no big deal. I've been doing this for five years.

But when I leave the doctor's office there's always a part of me that feels... a little crushed. Disappointed with reality. Not exactly discouragement. No matter what, I am blessed. It's more like a reality check. It's a reminder that even if I feel great, everything isn't as it should be. I know I will experience the effects of CFS again: even if it's not today.

See, most of the time, when I'm feeling well, I like to pretend that there is nothing wrong. I am just like everyone else. I may sleep a bit more and eat strangely. There are some physical things - like rock climbing or skiing - that I haven't done in years. But mostly, I like to think, I am just like you.

And I am -- in all the ways that really matter. I know that I am blessed because God has given me the ability to LIVE: to love, to serve, to work, to make a difference, to experience joy, to learn and grow. And even if I can't do it with the same energy and gusto as the rest of the world, that's OK. Because the ability to do it AT ALL is a gift. And that's something I don't just KNOW. I understand it. It's become a part of who I am.

Usually I wake up and I am thankful that I can get out of bed. Because I remember the days when I couldn't. Have you ever been there? Back in the early days of CFS when I was confined to my bed, I would spend hours staring at the drywall pattern in the ceiling. Hey - that kind of looks like a flower. And that shape in the corner reminds me of a sunrise.

Those were the days when life seemed to stand still. My arms hurt too much to hold up a book, so I couldn't read. Too much conversation and activity made me exhausted. My roommate at the time introduced me to her mom's library of old movies. So I spent hours watching films from the 40's and 50's. Sometimes I would listen to sermons on CD.

I look back and realize how much I have changed as a result of that time in my life. I've always been a "thinker", but during that season... when thinking was my most regular activity... I developed a quieter, more serious, more analytical side. I learned more about prayer. I learned to really sit still and listen because I wasn't distracted with other things. And I learned empathy: I found a connection with others struggling to make sense of their lives turned upside down. No longer did I respond to hurting people with a simple "I'm sorry. I will pray for you." I could respond with with a gut-level, heart-wrenching "I understand. And I hurt with you." Because I really did.

The rest of the world rushed busily along, but I was no longer a part of it. I was a spectator. It's an odd feeling really. Watching my twenties sort of fade into monotony. I gave up my old life. I had some intense discussions with God -- about broken dreams and disappointment. I couldn't understand at first, why He would allow it. Slowly He began to show me things that have shaped my faith and my knowledge of Him. Deep things, that have made me understand that -- in an otherworldly kind of way -- I was perhaps more fortunate than my friends who were healthy. (But that is for another blog.)

Still, the sickness and fatigue dragged on. It seemed like it would always be that way. Months went by. And then the slow progression towards healing. A little better, then a little worse. More research. A new doctor. Stricter diet. Pills, pills and more pills. (I still take 16 every day.)

And at last I arrived where I am today. An impasse, if you will. No longer sick, but not quite well.

It isn't a bad place to be. I know enough of illness to understand the miracle of health. I have the resources and knowledge to fight against it. Most days I get along just fine if I make good decisions with my diet and manage my activity level. And I have hope that I will keep on improving. I can always look forward with the belief that tomorrow, or next week, or next year may be better than today. After all, I have come so far already.

When I have days like yesterday ("Doctor Days") where the weight of it all lands on my shoulders, I take comfort in knowing that the sadness won't last long. Tomorrow I will wake up and remember all the reasons I have to be thankful. I will remember that God controls all things. I'll remember that I am not a physical body with a soul, I am a soul with a physical body. And one day I will leave it behind on this worn out earth and wake up in my REAL home. No more sickness! I have so many reasons to praise God, but that promise -- that one day I will receive a new body -- is especially precious to me.

"All creation anticipates the day when it will join God's children in glorious freedom from death and decay... We too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us. Now that we are saved, we eagerly look forward to this freedom. For if you already have something, you don't need to hope for it. But if we look forward to something we don't have yet, we must wait patiently and confidently." (Romans 8:21, 23b-25) NTL

Here's to waiting with patience -- and confidence -- for that wonderful day.