Friday, October 2, 2015

  

 What is Comfort?

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    What makes me comfortable in my world of living with a chronic disease? It’s an interesting question. I have pain. A lot. Maybe not daily, but close to it. So in looking at this question and request for posts, I had to do a lot of thinking.
    You see, in my blog, though I try to keep things funny, I am also very blunt. Chronic diseases are tiring to live with. The stress of the near constant pain, the fact that we keep our symptoms hidden from others due to the chronic nature, the fact that we are not believed in most cases because we look healthy, and knowing there is no cure can turn anyone into a mushy lump of pasta!
    Yet everyone I know with a chronic disease is good natured, happy, fun to be around. There is a certain grace in acceptance that allows us to just live, even in the continuing uncertainty of our lives. So in thinking about what makes me comfortable, or what makes me feel better, is it so strange that I say I find a certain comfort in my disease?
    You may think me crazy, and at this point, I very well could be! But I have spent nearly 20 years of my life sick. I have ranted, cried, fought the disease, fought my pain, fought my doctors, and for what? To end up in the same place I probably would have been in if I hadn’t expended all that energy fighting. So I gave in.
    Do not mistake that for giving UP. I will still try treatments that seem worth attempting to slow the progress of this disease. i have a lot to do yet. I simply gave in to accepting who I am: A person with Sjogren’s. And that is what gives me comfort.
    You see, I can now wake up and be in my skin with whatever symptomatology is there that day, and I am OK with it. I accept it. I recognize it. It is familiar to me and I know how to deal with it. If you ask me, no I do not want to be this way. But I am. So I deal.
    I’m swollen? Get up, drink, move a bit, take my meds-it should dissipate. I’m in pain? Wrap up in my favorite blankets-and maybe grab a teddy bear! I call it cocooning. The extra heat helps my pain and stiffness especially since I already take a daily pain meds. My back goes wonky? Lay down on my back with my legs up. The familiarity of my symptoms is comforting. What is not is when they change.
    The sudden onset of pains in my wrists that are so sharp I drop things causes anxiety. I don’t know what it is or what to do. A sharp pain in my right knee tells me I have to shake it out-no I do not listen to Taylor Swift while doing so. Swelling moved a nerve. When I couldn’t breathe due to pain in the center of my chest, I flipped for a bit. I had never felt that before. I thought it was my heart. I know now it’s my sternum moving when I swell. Now it is familiar. Now I can handle it. I am comfortable with that symptom. My wrists have not yet been explained and I don’t yet know how to handle them. I am not comfortable with that.
    So yes, I live with a disease that is chronic, painful, and has no cure. Yet in some strange way, my intimate knowledge of my disease actually causes me comfort in that I understand it. I understand my body. I know how to make myself feel better. I may not be able to control this disease, but I know it well enough now to control how the symptoms affect me. And that is extremely satisfying. And ultimately comforting!

Sharilynn Battaglia
10/2/15