Quality of Life

When I had surgery a few years ago, my doctor told me I might have to make a choice between preserving my fertility and getting a clean bill of health. "I want to be well," I told him. In that moment I knew for certain that I was never going to have children.

My husband and I had always leaned strongly towards remaining childless, so this was not a major sacrifice for me. It was more like the final stamp on a package already wrapped and waiting to be mailed. The choice was made and done with.

That choice shifted my focus on my endo, though. For many women, endo is the barrier between them and motherhood (a struggle made all the crueler given that pregnancy often relieves the symptoms of endo, sometimes permanently). For me, the standard became "quality of life."

At first, I could tell myself I was lucky--endo didn't affect my quality of life. I didn't have to worry about surgery again, because my quality of life was good. If I wound up on the futon with a Magic Bag watching Nostalgia Critic one or two days a month, that was a small price to pay for my overall good quality of life.

Slowly, though, those one or two days a month became four or five days a month. I had to cancel plans more frequently. The question became, "What is quality of life?" Is three days of illness a month okay, but four too much? How many times do I have to postpone my plans before it becomes unacceptable? I was often in pain, but not a lot of pain, and I knew so many people "had it worse." I started trying to quantify my quality of life mathematically: on a scale of 1 to 10, with 1 being hardly any pain at all, four days at 5 is equivalent to two days at 7, and last month I had that 8 but it was only for a few hours...then again, a whole week of 3 is exhausting...

Last year I wound up in the emergency room after a week of on-again off-again pain and constipation. That day marked the beginning of the downward slide until, finally, I was forced to admit that "quality of life" is a myth. There's just life. My life was one that involved pain and isolation, and I decided it didn't matter how mild the pain was or how infrequent the isolation. It's my life and I want to live it the best I can.

So no more mental math. No more brushing aside the bad days. No more comparing my pain to other peoples' and deciding things aren't so bad. I'm not going to discount myself by discounting my reality. 

Abandoning "quality of life" doesn't mean wallowing, or dwelling on my problems endlessly (that's what this blog is for). It means that I'm no longer willing to accept less than the best for myself. Whatever needs doing to make my life the best it can be, I'll do it.

Endomees, you are going down.