The Timer Of My Life

The Timer of My Life

When I decided to write a blog about my dealings with CFIDS, one of the things I thought about was what to call it.  How could I capture in a title what it is like to live with a debilitating illness?

I came up with many things.  Most of them unprintable.  I kept returning to the one lesson I have to learn over and over— on a daily basis, an hourly basis, a moment to moment basis.  My time is no longer my own.  There is a great big, fascinating world out there that I want to be part of, but my body will not allow. 

I have learned that if I push too hard on the good days, I have more bad ones.  It was not a lesson I learned easily, and one which I frequently test only to fail again.

So the timer has become my guardian.  There is pretty much nothing I do any more to which I don’t set a timer to limit myself.  I time my showers, my walks with the dog, the amount of time I clean, do yard work, write, shop, work. 

When the timer goes off I move to the next thing whether the task before me is complete or not — a break for a rest always in between any activity I do.  Things will get done or not.  I’ve learned mostly to accept it.  I set the timer for my naps so I don’t oversleep.  This illness being such that without my timer, many days I would be unable to do more than sleep or sit like a zombie in front of the TV.

This is not the life I wanted, but it is the life I have. I do not like it.  I hate missing birthdays, celebrations and canceling plans.  I hate that I have become afraid of making plans, knowing I’ve had to cancel so many things in the past and I again may not be up to leaving the house for a scheduled outing.  Over the years I’ve fought it, and through the years I’ve made plan after plan in hopes of figuring out some way I could do the things I wanted and needed to do.  I passed plan Z long ago.  But with each plan that fails, I try again, keeping what worked, discarding what didn’t.

The timer has been the one thing that has kept me going.  With CFIDS the most important aspect — besides getting enough of the ever elusive, ever needed sleep — is pacing oneself so as not to get into a push/crash cycle where you do too much on a good day — or any day — only to crash and spend days, weeks, months recovering.

Long ago, I stopped setting my alarm clock to wake me from my daily naps.  It became annoying to constantly change the time each time I needed to rest.  I tried an alarm clock with a double timer — one for mornings and one for naps — but when I would need or have time for my naps changed too much.  The timer became the solution.  More than regulating my naps, though, the timer became a way for me to partake in and enjoy as much of life as I can. 

The strategy is far from fool-proof.  After all, it only works when I let it and I often get annoyed by not only the sound of the timer, but the mere sight of it.  I don’t like the reminder of the limits placed on my life.

But, then, I pause, as I must when the timer goes off and am reminded what those moments in between the beeps have brought me.  They are not all the moments I want, but they are powerful in their mere existence.  I can hold hands with my husband.  I can work.  In a few minutes, I can plant a couple seeds that will grow into a beautiful flower that all the neighbors can enjoy or into a mouth-watering tomato that will taste better than anything from a store and much closer to my kitchen. I can send an email to a friend and bring a smile.  I can teach my dog a new trick, which she will perfect over many small moments together.  I can write a few lines for a picture book or a few lines for a blog that — if I’m lucky — will help shed even a little light on the devastating effects of CFIDS. 

This is not the life I wanted, but it is the life I have.  Moment by moment, it all adds up. I am grateful for all them.

            Time’s up.