I believe, for myself at least, that being chronically ill is like being in a boxing or wrestling ring. You are knocked down but you get back up to fight again. You bounce off the roped in sides and get thrown right back into the middle of the ring for more. You might be beaten down but you continue to get back in the ring. You sit in a corner to rest and get a motivational speech, from yourself of course, and then jump back into life, you're ring. Just like some of the boxers or wrestlers after they have been beaten up badly and probably want to stop you realize you must go on to the end. I was reminded of this as I was talking with someone this weekend who asked me how I was doing. A person whom every time I see them they ask me how I am. They never ask in the crowd but always at some point when we are alone. I told him I was doing ok which is usually my generic answer. I feel like it is one of those in the middle answers, a not great but not horrible answer either. Then he said it's hard getting old but caught himself and said, "But your not old." I said, "No I'm not." Thinking to myself I sure do feel old. I told him it's been almost ten years in which he was shocked it had been that long. I have been thinking about this for a few days realizing it really has been ten years. I can hardly believe that I have been dealing with this for so long. Truthfully it has been twenty five years but ten under a rheumatologist care. I begin to wonder how much life I have lost in all that time. A lot. But then when I think about it I have also gained a lot of life. Eyes wide open I have learned so much about myself, many things I loved learning others things not so much. I have learned a lot about other people good, bad, and some very ugly. I've had the time to process so much and for that I am thankful.
Whenever I get out in the world and see people I also get the dreaded question, "What have you been doing?" In my head the answer is, "Surviving," but I never say that out loud. What comes out of my mouth is some sort of answer filled with jumbled words that make no sense because I don't know what to say. I almost feel personally attacked when I am asked that question. A sort of guilt I put on myself. Its funny because I have to choose my words wisely. If I say I'm good people take it as I'm normal and then I get the usual response that we need to get together or that I need to come over to visit them. No, my good is not your good. My good is I got out of bed today and I am here. That's it for my day. It isn't like I got out of bed ran ten errands, did laundry, prepared food, etc and now I'm here. No. I got out of bed , got dressed, and I'm here. This is another reason isolation is so much easier for me. The problem is I have always been a giver and I think people think that I am still that person but I'm not. Far, far from it. I have finally realized it is okay for me to take care of me instead of making everyone else's life easier. I'm good with it but it sure would be easier if people could respect me enough to quit expecting me to make their life easier and do what they think I should do. I'm not doing it anymore. It feels really good to finally be here. Of course none of this applies to my family because my extra energy goes to them and that is exactly where my energy needs to go whether people want to understand that or not. I'm not going to apologize to people who think I need to be there for them who in turn they are never there for me. I'm over that. Life has to be lived and one thing I have learned is we cannot expect others to make our lives easier that is up to each of us as an individual. I hope this is coming across the right way and not in a selfish way. Another hard part of chronic illness is trying to explain the unexplainable of living this life.
In all of this writing as in all of my blog entries I don't write to make anyone upset but to hopefully give the normal world an idea of what it is like to be sick all the time. Most chronics live a good life. We are active. We love our families and we push on but it just looks a little different than the rest of the world. It is my hope that the next time you see someone with a chronic illness you will treat them like anyone else but maybe have a little more compassion and think before you speak. For many of us we have lived like this for so long most comments roll off our backs but every once in a while a conversation ignites something in our head and forces us to think deeply. Bad thing? No! Thinking deeply to oneself helps us grow. It helps us get closer to the acceptance we need to get to so for that I am grateful for the comments. I hope you can be grateful for the comments directed toward you too.