Right now, there is a wondrous light show going on just ten minutes away.

I am not there.

Life in a vibrant city offers more people, events, music, art, theater, volunteer opportunities, etc. than even a person in perfect health can keep up with. Life anywhere (assuming basic needs are met) is a rich offering. We all make choices about how we will spend our time. Even if — as we sometimes wish — we could be in two places at once, we still couldn’t experience everything.

I had plans for this afternoon. I ended up in bed.

Like countless others, I have limited energy. CFIDS/ME or Systemic Exertional Intolerance Disorder, or whatever else someone comes up with as a label for my group of symptoms, is a chronic condition with no known cure. Pain, vertigo, tinitus, brain fog. deep fatigue — all are worsened by too much stimulation or effort: Noise, lights, action — or thinking.*

Before this disease, I was curious about everything, high-spirited, and ready to throw myself into a challenge.

Not anymore.

I remember well when I was much sicker than I am now. I couldn’t keep up with the essential duties of a wife and mother. My children suffered. My husband had to pick up the pieces even as he feared for my life. In spite of every test the doctors could think up, there was no diagnosis and thus no prognosis.

I am convinced that the main reason I am doing better is because I have learned to be careful. If I write a time and place in my date book, I leave white space on the dates around it so I can rest up before and recover afterwards.

If I am getting ready to go somewhere and my head hurts too much for me to pick out clothes to put on, I know I don’t have the strength to go. I am still learning to be comfortable with canceling plans when I have to. I still feel guilty about it when it happens. If I’m not willing to take a chance on having to cancel, I can’t make plans at all.  I require a lot of down time — but too much time alone is not good for me either. It’s worth the effort to spend time with good-hearted, engaged people.

This morning, my plan was to stay home before joining the Quaker quilting group this afternoon. I did stay home. But an old friend telephoned.

highquality_pictures_of_ancient_english_letters_170435Except for a few months on a college campus, Anne and I have never lived in the same town. We met in a poetry class and our friendship grew stronger through countless letters, occasional phone calls, and rare visits. Anne is a cancer survivor, several times over. A few months ago, she left voice mail on my phone to let me know she can no longer see well enough to write letters. This was a blow to me. I can only imagine how much worse it is for her, who wrote letters to everyone, often.

It can be difficult for me to make friends or to maintain friendships. I especially treasure the friends who have stuck by me. So if Anne calls, which is still not often, I will answer the phone if I can. We had a long conversation this morning. And afterwards, I went back to bed. I slept through my quilting group. Later, I apologized to the quilters via group email.

Of course, it wasn’t the phone conversation that did me in. I did too much yesterday — met with friends for coffee in the morning, worked with my friend/collaborator on our Knitting Nana novel in the afternoon and then played with the grandchildren. No downtown. Overstimulated, I didn’t sleep well.

Yes, I am not as sick as I was. But I’m not as well I’d like to be or I’d be at that light show right now.

Oh, well. Life is still wonderful.

There’s always a next time. Maybe next time I’ll plan better, not be done in, and I’ll see that light show.

 

*E.g. I could think hard about the punctuation in this sentence but then I’d be too worn out to finish typing the rest of this post.

2 thoughts on “Plan to be Well

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