The Hardest Part of Being Ill

Granted dealing with chronic illness is something you get use to. What a horrible thing to say in only a few words but sadly it true. In some odd sort of way it becomes a way of life, a way you don't want, but your way of life. Dealing with the symptoms becomes second nature. The worst part is dealing with all the planning and wondering when it comes to illness. This weekend our son graduated from Pharmacy school so we drove back and forth to Ann Arbor twice. I tried not to think about riding in the car too much and decided I was going to go with the flow, after all how bad could it be? A two and a half hour rife four times in twelve hours seemed doable, and it was, except for the unexpected side effects. Before the trip I kept the thoughts of the price I would pay tucked in the back of my mind. I have said it many times before that when you are chronically ill and make plans you always have to out weigh the good and the bad of everything you plan, from a shopping trip to your sons graduation. It is the constant battle that goes on in your own private suffering. I did well with the ride and have always loved road trips because you are confined to the vehicle. I love talking about anything and everything when I ride in the car. Rich and I don't get tons of time together so when I get him trapped in the car, alone, muahhhh, I take total advance. Poor guy. I thought I was doing well physically until I got home from each trip and noticed ankles and feet the size of large sausages hanging in a smoke house. The longer I was home the pain set in and the burning wasn't any better. I lathered up with the aspercreme, one of my best friends, and kept my feet up as much as possible. It feels somewhat better and was worth all the pain to watch our son become a doctor. Proud moments my chronic illness will never take away from me. It can rob me of my health and cause me pain but it can never tear me away from any monumental moments with the people I adore most in life. 

I feel, at times, like the chronic illness wants me to believe that it is the boss and it's odd how the illness can become an actual voice in my head. The arguments I have with it can be exhausting. The words I say to it I am unable to write here. Even though it is true that the chronic illness controls a lot I will never fully allow it to be in the drivers seat. I will continue to pay the price and prove to it that I win, as I did this weekend. This weekend proves to me that I am still normal and that there is so much life out there. I realized it after the graduation as I we walked to the restaurant for dinner. There was so much life on the streets as we walked. Passing all the people who have normal lives wondering how it must be to do all the normal things the rest of the world does. Oddly I didn't feel jealous or sad for myself but happy for every one I passed by or saw in the distance. It made me happy they didn't have to always be one step ahead of their illness. Happy they'd could enjoy the city life they all take for granted. The hardest part for me is knowing I am different but still looking like everyone else on the outside, at least to everyone else. Every time I look in the mirror I wonder who the person is looking back at me. I go as fast as I can getting my hair done and doing my makeup because looking at myself is painful. It makes me remember who I was and the dream I have of becoming her again. I'll never lose that hope no matter how bad this is. I'm sure my emotions are running high because I had to make an unexpected appointment with my polmunologist because of symptoms and when I have doctor appointment it's very hard on me emotionally. It's another one of the hardest parts of illness. I have to fight the urge to let the illness win but before seeing doctors I still worry.  I've learned even though the illness won't win its still ok to admit it isn't easy. I've learned I'm in charge but that doesn't mean the unknown of the future isn't a little scary. I've learned I'm stronger than I ever thought possible while at the same time knowing I'm a little weaker than I ever thought I could be. I've learned that sometimes some of the hardest parts of being ill become the parts that make me the strongest and for that I am grateful.

God Bless!

Dianne