CFS Tuesday

Part of our ongoing series about life with CFS

Living with CFS means missing out. The diagnostic criteria for CFS requires that the fatigue "results in substantial reduction in previous levels of occupational, educational, social, or personal activities." That cold, clinical description cannot convey what this means in real life.

I missed the weddings of two former roommates. I missed my cousin's graduation. A good friend's baby shower. Countless parties for birthdays, First Communions, and house warmings. And I've missed an unknown number of casual dinners and gatherings with friends and family.

In a few weeks, I will miss an important business event for my husband's company. I considered accompanying him to Los Angeles. I didn't care about the crash I knew would follow. No, I decided not to go so that my husband would not be distracted by worrying about me. As my primary caretaker, he is always aware of my physical state. Do I need to sit, lie down, go home, take medication? Have I eaten enough, slept enough? If I were to go with him to LA, he would spend the whole time torn between taking care of me and taking care of his business. I can't put him in that position.

So once more, I will miss out. Family and friends do their thing, and out of necessity I am left behind. I've grown more accustomed to the feeling. I don't get too angry about this anymore. Now I feel sad acceptance of my situation. I cannot go, but others should not suffer because of it. This is just the way it is.

Noricum proposed the Swatchy project as a partial solution to my missing out. Now, at least, I send my Swatchys out into the world to take my place. It works! Through Swatchy, I feel more connected to all the events that I must miss. It doesn't erase the pain, but does make it easier to bear.