I Think my Brain takes the Pain the Worst

I was going through one of the more painful aspects of my disease the other day (burst a rather large chocolate cyst) and I was forced into a lot of bed rest and (like it or not) time to reflect. I was a bit put out about it all because the exact day before the event was the best I had felt in a long time. Some new medication was apparently beginning to work and I was tempted to find hope for normalcy. I say tempted because I personally find it dangerous to get too attached to the idea. So, when the next day was a total train wreck, I was upset but only partially surprised.

So I sat (okay, laid down in the fetal position) and thought about my situation and the pain I found myself in. And all I could think of was that, physically speaking, the pain was not that bad. Now, let me clarify this. I am constantly between a 5 and an 11 on the pain scale. I've got tremors shooting down my leg that have routinely led me to contemplate sawing the thing off. When I walk, I feel like I have a machete jabbed into my abdomen that twists with every step (which, for some reason, no one else can see). My physical pain is a tremendous difficulty in my life and I'm not trying to say that it's not there. However, in comparison to my mental pain, it seems like a splinter in my finger at times.

That weekend was a great illustration of why. Despite trying to remove the temptation to find hope in feeling better, I was still devastated when I could not move the next night because of my throbbing body. Being stuck in bed, losing my hobbies, envying and losing my friends, being seen as a downer, that is what truly hurts. The mental pain is what truly gets to me. Fighting an uphill battle takes it out of me and when I slip down the slope it takes a huge toll on my fatigued mentality.

So when I tackle the pain, I do not merely focus on my swollen belly. I focus on my frustrations. My depressing moments. My envy of 'normal twenty-somethings'. My fragile hopes. Trying to groom up happiness and success wherever I find it. Because if I ever ignored the mental toll this disease takes, I would find myself in a deep and dangerous pit.

I think a lot of us focus a little too much on the physical aspects of diseases and disorders. Distracted by the physical limitations, we can ignore the mental ones that follow. And I think recognizing those problems before they become problematic is where you can succeed. For a great illustration, I recently read about how a family kept all their mother's favorite foods on the bottom shelf of the pantry, so that she could reach them from her wheelchair. This arrangement prevented her from having to constantly ask for help with food and gave her a greater enjoyment of independence.

What the handicap keeps you from that is what's frustrating, not the handicap in itself. Being in bed for a day(s) is not so bad, but I get angry when the situation is thrust upon me. So, instead, I try to work on my book, read, draw--do productive things that make me feel like it is convenient rather than a prison sentence. In that mental reconfiguration I cannot change the physical circumstances of my ridiculous body, but I can change my mental reaction. Yes, I would prefer to go hiking and work, but if I can't... I have to find a way to make it work. Otherwise, I am setting myself up for a loss of control and will be completely at the mercy of my disease. I can be miserable or happy. Those choices are still mine!