Tuesday, September 24, 2013

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. 


  1. I understand. Oh my gosh, how I understand. I have tears streaming down my face from reading this because I know what you're feeling and am so happy (not that you're going through this horrible disease too) that I'm not alone. I stumbled across your blog after multiple migraine an chronic pain searches on the Internet - I seem to scour the Internet when I'm having a really bad day, pain wise, to see if there is maybe just MAYBE something out there that I haven't tried. Of course, there never is, and I usually end up somewhere on YouTube learning how to speak to camels or something useless, but today I found your blog. I have struggles with migraines since I was a teenager. I'm now in my mid twenties, and what used to be a migraine a few times a month is now a migraine 3-4 times a week with chronic pain every day. I know what it feels like to live in fear, not knowing if you'll feel okay to attend a family function or not. I hurt for you (literally and metaphorically!) and know that I'm praying for you!


    1. Hello Ashley,
      Thank you so much for your kindness. I'm truly glad you are here and that we can share our experiences.

  2. I'm a longtime reader and also a chronic migraine sufferer. I'm lucky enough in that I do work but it's a low stress, easy job. I always wonder why I feel so busy yet all my healthy friends do twice the amount of things I do. You've hit the nail right on the head! Pain and the prevention of pain is a very time consuming activity! Relaxing on the couch after a long day isn't just lazy, it's pain prevention. I sometimes feel like the migraines are a second job.
    And thanks for sharing your life for all of us to read! Definitely makes lots of us feel like someone gets it!