Acceptable Struggles, Unacceptable Struggles

Sometimes we have to accept things in life that we'd rather not. I'm actually okay with that....as if I have a choice.

I have no memory of a pain-free day in my life. I know that's been truth since I was 15 years old but before that I'm not so certain. Surely I did, I just don't remember it. But since my first diagnosis with MD I haven't had a single day of pain-free living. The thing is, I have re-defined what pain is and what might make someone else feel poorly enough to stay home, I just consider a normal day. And since it's not enough pain to keep me down, I generally don't take anything for it. But lately I've been thinking about it quite a bit. A couple weeks ago I asked Steve, "what do you feel like in the morning?" He asked, "What do you mean?" I replied, "Well, do you feel normal or do you hurt?" He said, "I feel fine, normal if that's what you mean. I don't have pain."

I can't wrap my head around that. I desperately would like a day where I wake up and NOTHING hurts--or even where the pain is so minimal I can get up and start with my day immediately rather than transition to the sofa for the next 30-90 minutes until I can actually function. While I would like that, it is not my reality and I have learned to accept that. It's an acceptable struggle.

But what I can't accept is the continual struggle for medical treatment that will work effectively. I feel like a one woman platoon taking on an entire battalion. Consider my most recent interaction with a doctor:

DR.: Julie, aerobic exercise would be really good for strengthening your muscles and increased mobility.

ME: I hear what you're saying. I do. And I understand...BUT what I'm referring to is the ability to function on my own for even a day. I can barely get out of bed, I cannot lift a gallon of milk by myself and sometimes getting from point A to point B means Steve has to help me. I'm talking about getting my disease under control so I can even go for a half mile walk. Can we start there?

I really pay $325 per office visit for this aggravation. I'm not anti-exercise. I believe in the health benefits, it's good stewardship of the body and mentally it's fantastic. But to a person who struggles every day to walk up the stairs and get out of a chair, aerobics is not high on my "to-do list". I count it a successful day when I can work my 4 hours, do a load of laundry, pick up the house and make dinner. Most days I can accomplish at least 2 of those things and I'm ecstatic...as well as exhausted.

This, to me, is an unacceptable struggle. I'm not asking the doctor to understand how I feel. That would be impossible--it would be like asking me to understand what it's like to be pregnant. Some things you've got to experience to understand. I am not even really asking him to have empathy. That would be nice...I love a good bedside manner but it's not crucial. What I am asking for is some stinkin' common sense that prohibits him from saying such dim-witted comments.