Sunday, August 9, 2009


I do have a choice.

I can stay home, make sure I eat on time, get enough rest, and pray that I remain well (still no guarantees there).

Or I can go to a friends place, out dancing or to play pool, and almost certainly be bedridden with terrible muscle pains and excruciating fatigue for the following week or so.

It's not much of a choice, but still...

I was feeling so much better when I got back from India that my husband and I planned a 5-day vacation in Los cabos, Mexico. The place was gorgeous, the people were fun, the resort was exquisite, and I was sicker than I've ever been in my life.

I tried so hard to be 'good'. I rested when my husband was out playing beach volleyball. I ate every 2 hrs to keep up my strength. I made sure I got enough sleep. Still, by the time we had to fly back to San Francisco, I was so ill that, for the first time in my life, I had to ask for a wheelchair at the airport.

I always knew that a wheelchair is a good idea for me when there are long distances to walk, but I could never get myself to go in one. It may be physically more comfortable, but emotionally and psychologically I felt it would be too difficult for me. I couldn't bear the idea of having to rely on a wheelchair at 30. It would be like the final step to giving in to CFS.

But last month, I couldn't help it. I couldn't stand, speak or even think. The fatigue was unbearable. So, when my husband asked for a wheelchair, I sat in it.

I think it was almost as difficult for my husband to see me in the wheelchair as it was for me to be in one. I could see how close to tears he was as he pushed my chair.

The airport staff was incredibly nice and helpful. But when one of them wanted to get me a doctor I tried to explain CFS to him. The surprise on his face when I told him that a doctor couldn't help, that no one knew what was happening to me or that I couldn't know when I'd suddenly collapse again, made me realize again what a strange illness we live with.

I have gotten used to CFS. At least I thought I had. Almost everyone who knows me now understands the illness somewhat, but it's when I try to explain the condition to someone new, that the true horror of CFS dawns me.

I'm tired of being tired. Of having swollen eyes and and an exhausted smile in every photo. Of the uncertainty. And most of all, I'm tired of not being able to be independent.

I wonder when it'll all be ok again.


  1. I am sorry to hear of your recent crash.

    Your post deeply resonated with me and reminded me of my own experience in a wheelchair when my hubby and I visited Disneyland earlier this year. (If you're interested, I wrote about this experience in my June 2 entry called "Disney on Wheels.") I, too, am 30 and am constantly frustrated by the "choices" I am forced to make to stay as healthy and functional as possible.

    I'm with you, I can't wait until someone finds a treatment, cure, or whatever that gives us our lives back!

  2. I'm so sorry to hear about your severe crash on vacation. My worst crash ever was during a week-long vacation with my family at a lakeside cabin. I spent much of the week unable to get out of bed. Definitely the low point of my entire life.

    Things WILL get better. Rest, take care of yourself, and hold onto some hope.


  3. I'm struggling with this myself today. I admit I don't like my choices. It seems like no matter how long we live with CFS, it is still difficult to make those choices between living life and getting healthy. I hope you recover soon, and that the choices come easier.

  4. Thank you all so much for your comments. It means a lot to me to have your support!