Tuesday, May 01, 2007

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.


Korin said...

i thought of you today, while discussing with a patient how she overcame cfs after suffering for 13 years.
sending love and healing energy.

Knittah said...

Korin - Thank you! And to you and all readers, if you have helpful info to share, please do. All viewpoints are welcome here (with obvious exceptions for the -isms).

noricum said...

Korin - people recover from cfs? That's such good news!

Mary Anne said...

This post couldn't have been more timely. I've been trying to think of how to explain to my readers the emotional impact of missing important milestones in the lives of friends and family because of long term illness. You've said exactly what I wanted to get across but the words wouldn't come, so thank you. I am going to link to this post on Friday, if you don't mind.

Korin said...

she worked long distance with a doc in colorado... who was brilliant but a giant asshole. email me if you want more info, and i'll put you in touch with her :)