It means I don’t always wash my hair

I had someone asked me what it was like to live with chronic pain this week! And I just sort of sat there and tried to come up with some sensible answer.

I thought about pathology and degenerating cartilage and all kinds of medical jargon. But I realized quickly that has absolutely nothing to do with the answer.

The answer people want is something like well its not that bad or you get used to it or I handle it fine, it doesn’t get in my way that much. Thats an answer that makes people feel good about you, it makes them either be like wow i don’t know how they do it. And I am somehow transformed into some inspirational noble person who overcomes it all and has a very high tittering pedstal.

The answer people secretly suspect is true is something like its terrible, I cry myself to sleep every night. You have no idea how hard it is….woe is me. Pity me.  I need narcotics.

The truthful answer is not an answer people want.

Because the answer would go something like this: Well I haven’t washed my hair in a week because my shoulder hurts or I am too tired when I get home to stand for a shower, so I just take a bath. Or I just didn’t wear socks today because it was just not worth the pain of bending over and fighting with my funny shaped feet and aching hip. I didn’t make lunch last night because I was too tired and had run out of energy (spoons).  Or I just can’t quite focus on a movie much past 10:30 on a day I have worked or gone to school because I just run out of energy. And last week I went hiking and ever since then I have this shooting pain in my knee and as a result I didn’t exercise this week.

I am just always a little mystified when people ask so what’s life to live with degnerative arthritis? or how’s your pain today? Because I am skeptical that they really want the answer to that. In fact my life is not so terrible, nor is it noble, it just a bit more of a game of calculated risk and energy economics and a few extra bad hair days.