Not Sleeping With The Enemy

There are 168 hours in a week. Most doctors recommend that we sleep for 56 or more of those hours in order for our bodies to repair and refresh themselves and maintain optimal health. In the past 168 hours I have slept for a total of 9 of those hours. My chronic body has once again, become my enemy.

As in many chronic pain conditions, fibro bodies go through periods of flare, also known as intense, unrelenting pain everywhere. No matter how strong the sleeping pill the doctor gives me, the pain walks right through it and says, "Oh! You thought you were going to sleep tonight? Aren't you just the cutest for thinking that."

Even though I am insanely cranky and tired, I may even just be insane at this point, today those four little words sunk in that drive most of us chronic pain people nuts. This time they didn't make me nuts, instead they caused me to re-evaluate how I feel about those four words. You don't look sick.

I ran into an old friend today that I haven't seen in several months. The moment that I stepped out of my truck she squealed, "Oh my Gosh, Rebecca! You look amazing!" She hugged me and then kept putting her hands around my waste, squeezing to see how small I have gotten. She repeatedly asked what I have been doing to look so amazing. She kept calling me 'beautiful' and 'one sexy Mama', and wanted to know if I could show her how to get in the shape that I am in.

Now, the internal conversation was vastly different from the external conversation. In my typical smartass fashion, the reply in my head went something like this, "Oh sure! You can look like an anorexic teenager too! All you have to do is ask God for fibromyalgia and as many of it's companion diseases as you can handle. Make sure that you ask to be in so much pain that you either have no appetite or can not hold food down and be certain to ask for enough pain that sleep is impossible for four or five days at a time and you're golden! Now stop touching me!"

The external conversation went like this, "Oh! Thank you. I haven't been doing anything different but that's so sweet of you." She knows that I have fibromyalgia but she is not one of those friends who has bothered to try to understand the disease. She means well and I don't want to hurt her feelings so even though the squeezing caused more pain and the gushing compliments made me uncomfortable, she doesn't know any better because I don't look sick.

I don't have an injury or illness that is obvious to the person who isn't looking for it. My close friends can take one look at me and know when I am having a bad pain day but the rest of the world sees a healthy, well groomed, fit woman. They have no idea that my shoulder and ribs are out of place again, making it hard to breath. They don't know that I haven't slept at all because I have learned the tricks that get rid of bags under my eyes and freshen sallow, sleep deprived skin. They never notice that I am gritting my teeth behind that friendly smile because it's killing me to stand there and observe the niceties of small talk. They have no idea that hug or friendly pat on the back probably just left a bruise or that under my jeans my legs look like someone used them for soccer practice because I have fallen down four times this week and bumped into various objects countless times because once again, my depth perception is off and sometimes my legs suddenly decide not to work mid-stride.

I don't look sick because I work damn hard to not look sick! As I drove away from my friend today, it dawned on me that I have been working to not look sick for over twenty years. Early on, I did it because if you look like you are in pain when you go to work, inevitably, the boss will want to send you home. Not good for the paycheck. Later, I did it to hide my pain from my children. I didn't want to scare them. I didn't want them to get the idea that Mommy couldn't play with them so I would paint on that smile and push through the pain so they could have great childhood memories. After that, I decided to not look sick so I didn't get those awful sympathy looks from anyone. If I am going to look the way that I feel, it will be when I am at home by myself when I have no intention of going out.

My pain is internal. You can't see it. My daily struggle is also internal. You won't see it unless I let you in. Come to think of it, I am pretty proud of the fact that I don't look sick. I don't want to look sick. I want to look healthy and vibrant because it gives me hope that I can beat back some of the effects of this disease and guess what....some days, I actually do! It takes a whole lot of work to look normal. It takes even more work to have just one day every few months that I all most feel normal but like most of the chronic pain people that I know, I am more than willing to put the work in just to have that one day.

The strongest people that I have ever met are chronic pain patients. We are strong because we have to be. We feel that we have no other choice. Well, I suppose we could give up, lay on the sofa and wait to die but what fun is that? We'd rather fight. Every-Single-Day.

The next time that someone utters those four little words to me I won't be offended. I will be proud. The next time that I hear those four little words, I will know that once again I have won because I don't look sick.