When I first started feeling sicker, than I had actually felt for years before diagnosis, I never thought, as I look back now, that I would be here where I am today. I don't know why all of the sudden I am feeling like I am starting from the beginning and life for me is like a recurring nightmare. Time after time just as I think I am getting better and doing so good the nightmare rears its ugly head and I am back in "that" place where I was almost six years ago trying to figure it all out. I still haven't. I try to force my mind to believe I am well. I do things that feed my soul. I think good thoughts. I love with all my heart, yet I am still there climbing the steps. The best way I can describe it, for myself at least, is if you think of the escalator at the mall. Do you remember when you were young and you would try to go up the steps but on the wrong side? You would run and try to beat the moving steps so you could make it to the top before it took you back to the bottom. I remember some people could do it, I never could. I feel like my life is that stupid escalator. I am always trying to run up the steps only to be brought back to the bottom starting over and over and over. Or just as I think I am going to make it to the top I slowly come back down or I just give in and let the steps win, dragging me to the bottom. It is a horrible feeling. Just when I think I am strong and I can do this, I back down there again. It is enough to make a person crazy, literally!
This past week I tried to cut back on my steroids. Just a little, every little bit less is better for my health, haha, but I finally realized today I just can't do it. I am tired and I gave in and went back up. Depressing or not I have to continue my regimen or pay for it. it is like someone who is depressed and when they take their meds and feel better they decide they don't need them, wrong! The heat here at 100 degrees is killing me even in the air conditioned house. Heat for me = weak, ill, and exhausted. There are the times that I just want to give up.
This week was vacation for Rich and we kept busy. Yes, it is easier for me to keep busy when Rich is there to help me but there is always the pay off. The past few days the payoff hit. I just want it all to stop. This is it? Forever? I will never be normal again? I try to put the thought in the back of my head as far as I can. I try not to think about "this being it, forever," but it is always lingering there. It seems just when I think it is gone some other physical symptom takes over, not only attacking my body but attacking my mind. Chronic Illness has a funny way of doing that. You become so tired and so wore out you are unable to even explain it to anyone. Most people roll there eyes or make stupid comments like, "Ya I'm tired too I worked all week and......." The thought in my head is that I want to scream out to them, "Well, I didn't work all week and hardly did a damn thing and I am weak, tired, and wore out so what do you have to say about that?" It sends you into your own hell, your own shell, never talking to anyone about how you really feel because no one understands anyway. The escalator keeps dragging you down even in the area of hoping someone might have a listening ear, that's all just a listening ear. No advice just understanding. Doesn't happen. People don't care they just want to fix and sometimes things just aren't fixable.
You see, when you hear of someone who is chronically ill you only think of them as the person they use to be or the person with the person with MS, or the person with RA, or the person with MG, cancer, or Fibromyalgia, etc, you never think of them as just another person. This was made all to clear to me as I was talking with someone a few days ago who was borderline diabetic. The person said, "I just don't want that "label" so I am going to do everything I can to stop it from becoming full blown diabetes." I can totally understand that statement and this is nothing against anyone, I get it. But what about us? The ones who can't exercise or eat right to make it all better? Is this really what people think of people who are chronically ill? Are we our diagnosis? A label? I don't feel like my diagnosis, nor do I feel I deserve a label. I still feel like Dianne, the person who still has hopes and dreams, it is just that now those hopes and dreams seem a little harder to reach and a little harder to accomplish. I still have a bucket list, surely not like anyone body else has, but it is still there. It may be the same one over and over, laying in the grass watching the clouds and other things that do not suck up the little energy I have, but they are still there none the less.
I pulled out one of my books on the bookshelf from years back when I first was trying to make some sense out of all of this. My life change from being a person living in the normal world, to a person trying to figure out my new way of living in this normal world. The book is called, The Lonely Patient. How We Experience Illness. It is written by Michael Stein, M.D. Yes he is a Medical Doctor. It is nice to read how at least one doctor understands it all. He doesn't write about the medial part of being ill, the drugs or the treatments in this book but the emotional side of illness. All that a patient goes through, what they are thinking, how they really are in this, all alone even though they may be surrounded by a million people. It is one of the best books I have ever read and it has helped me to realize all that I think and feel really is okay. Maybe just okay but okay none the less. I love this excerpt from the book because it is right where I am at this moment in time and have been for the past six years: "The sick need to make sense of things, yet they have a constant sense of incomprehension and a feeling of ignorance that somedays is exciting, hopeful even, and other days is anger-provoking and frustrating. During illness, as when traveling, one alternates between adrenaline and submission. Every day one lives the biology of anticipation: Whats next for me? Still, during illness there is really only one choice - to proceed or not to proceed. And not to proceeding is giving up."
I guess you could look at this as being true for all who are dealing with any type of burden whether it is health related or otherwise. In the end there really is no other thing to do other than to proceed, the way I see it there is no other choice. We must all fight the good fight. Hang on to hope and continue trying to make it to the top of that escalator!