The alarm goes off and I open my eyes. I know not to move too quickly because any small movement could be followed by a flare that would last for days. Slowly I turn and reach carefully to deactivate the alarm. Oh my God, my fingers! How could such a small movement, touching my phone alarm, send searing pain throughout my arm? Slowly I move my arm to a better position and allow my fingers to curl again, so the pain will lessen. My body is wrecked. I don’t think there’s one joint that doesn’t ache or hurt. Then the normal morning discomfort of needing to pee attacks. Can I get up? Can I stand the pain?
That is a typical morning for me. When my feet touch the floor, it feels like a few of the tiny little bones have been sharpened into knives that send searing pain up into my legs. The pads of my feet are heavy as if they are iron shoes slamming onto the wood floor. (I think I’m going to buy some fluffy memory foam slippers!) Me hobbling into the bathroom cannot be a pretty sight for my husband, but he is very supportive.
Sitting on the toilet is such a relief that occasionally I just stay there for a bit because I can’t tolerate the thought of standing and walking again. When I finally do stand up, I face the reality of the seven pills and a chew that I get to swallow each morning. “Hmmm, do I swallow these now and then go eat, or do I go into the kitchen to eat and face the possibility of forgetting my pills this morning?” (Several of my medications give me memory issues.) I usually just gobble them down all at once and head to the kitchen for some eggs or cheese so I won’t feel too nauseated fifteen minutes later.
About an hour after I get out of bed, I start to feel alright most days. Movement helps, and the more movement I can do, the better I feel. That being a fact, the types of movement that improve my day are limited. Walking is the best, and a nice andante pace improves my physical wellness and my psychological state. If I walk too far, too fast, or too long; it can cause a flare.
My days are a balancing act, but there are two thoughts that keep me going: 1. Life could be worse, and 2. It’s me against this disease and I refuse to lose!