Being in Pain is an Activity

Frequently conversations start out with questions like "What have you been up to?" or "How are things?". My gut response is that I've been busy. But then I can't exactly point to much of anything specific that has been keeping me busy so I often find myself actually responding with "not much" or "nothing". This isn't accurate either because I am doing things.

The trouble is that a word like busy has a very specific meaning to healthy people. Heck, I can remember being busy before chronic pain hijacked my life, spending almost every waking minute hard at work at my job, or on a play, or on a fundraiser, or socializing with friends...I was truly busy then. The thing is, I feel just as busy today as I did back then. I simply have a much smaller well of energy and time to draw from, which has redefined the concept busy for me.

What I've come to understand is that just coping with pain and all the other symptoms of my chronic migraines and fibromyalgia takes up a great deal of time and energy. It doesn't sound like much but the toll it takes on the body is profound. Add in daily activities like showering, grooming, preparing food, etc, and suddenly most to all of what little remains of my reserves are consumed. Then if anything else comes up, which is always happening because that's how life is, I feel busy. 

Right now I feel busy because we're building a house. There is a fair amount of coordinating that needs to happen. We are figuring out the financing, researching appliances, window coverings, colors, style, the many details of the physical move...there is a lot of additional stuff going on right now and it makes me feel busy. 

However, saying I'm busy to any of the healthy people in my life usually results in funny looks. 

I get that it's incredibly difficult for healthy people to understand that just because I don't work and don't have kids that I can still be busy. How do you even begin to explain to someone how being in pain is actually an activity? Everyone has pain so everyone thinks they understand it. How do you then get them to understand how different chronic pain is from regular pain? How do you get them to understand the cumulative effects it has both physically and mentally? How do you get them to understand that pain is just one of many symptoms that need to be dealt with?

As much as it looks like I don't do much or that I'm doing nothing, the truth is that I'm always doing something. The horror under that truth is that most of what I do is suffer and try to minimize that suffering. It's hard work. It's taxing. It's the hardest misunderstanding to overcome, in a long list of misunderstandings about my life.