I just went for a walk around the house. I made it a little over 1/2 mile, which for me is like a "normal healthy" person walking 2 miles. I can't explain it but I sure wish I could. I made it to about round number 4 and I could feel myself slowing down like a car when it runs out of gas. You are flying along the road at a steady speed and all the sudden you start to slowly come to a stop as the car glides to the side of the road, it is no different with chronic illness when you do to much. I was so proud of myself as I made round 6 that I thought to myself I really CAN do this. It is discipline, but I know the benefits will outweigh the exhaustion I am feeling right now. It will be worth it, it will be worth it, I keep saying this over and over especially since this illness thing can eat you alive if you let it. I will continue to repeat positive thoughts even on the days I am unable to do as much as other days! This is one promise I have made to myself, always in all circumstances look at the positive side. So, I only walked a half mile but it is a half mile more than yesterday. So, I didn't clean my house today but there is always tomorrow. Thoughts like this keep me going. I have to think this way or this illness could eat me alive.
While I walked I thought of a lot of things. How I continue to deal with all of this and wondering how and why one thing after another can keep happening to the same person. It still, after all these years, makes no sense to me at all. This lead me to think of how others could never possibly understand it either, as I can't understand it myself. Of course this lead me to more thinking. The thinking of those who do not understand. The cruelty of some people and how insensitive they can be to people who suffer with chronic illness. How even some of your closest friends now look at you as your disease instead of the person you use to be. Don't get me wrong, I can understand why, I really can, but I wonder what I would do if the tables were turned and it was a friend and not me suffering. I would hope I would have more compassion for them and understanding. I wonder if I write that only because I have suffered? If I never suffered would I have the compassion and empathy I have now. I think I would. I believe I would.
I thought about how so many different things come into play with someone who is chronically ill and outside relationships.. All the things no one thinks about. How some of us can get so mad at people who say stupid things to us. How we lose friendships because of the insensitivity of our friends. The world needs to understand that when you are ill your whole world shrinks. I don't think people can really comprehend this. You have less to do, maybe you can't work anymore, maybe you are stuck in the house more, maybe people/friends forget you more and stop inviting you out because you said, "no" so many other times. This is the stuff that is hard on us. Our world use to be huge like yours and now it is tiny. Think of a time you had the flu or a cold and how you couldn't do much, now imagine that everyday for the rest of your life. Can you?
All we want is for people to care even if they cannot understand. Care and understand that we are not rejecting you we are living with a monster that consumes our life. We, even if it has been years, are still trying to figure it all out, knowing we never will. All we need is love just like everyone else, but in a different way. We are still the same person we are just a little more complex than we use to be. We are just like you in so many ways. Understand we do not want to talk about how we are doing when we see you, but it is nice when someone asks and really does care to hear the details and our daily struggles. Believe me we can tell by the look on your face and reading your body language if you really do want to listen. I am an expert at this type of language. It is no wonder some of us pull away from the real world. The pity in the eyes of other people. The feeling of being totally alone when you are in a large group because you cannot connect to the big world the group lives in. The best one is when you are left alone with someone and they are so uncomfortable they make up excuses to leave you. This one I cannot figure out but it really does happen. Another reason the chronically ill stay home, it makes it easier on everyone else. Sad but true.
Life goes on for all of us, ill or not. We all do the best we can with what we are given. In the end it is just that the chronically ill need a little more understanding and love than most people. That's all.
God Bless!
Dianne
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