I'm Okay

Dear friends and family,

         You asked me, "How are you?" but hardly paused for an answer as you continued on your way. My answer would probably have been "Okay" or "Fine." However, you perhaps should know the truth so that you can have an opportunity to understand my struggles.

         First of all, just one of the conditions that try to control me would cause extreme pain and exhaustion, yet I have three: lupus, rheumatoid arthritis, and fibromyalgia. The pain isn’t the “minor pain of arthritis” advertised on television that can be erased by taking one or two over-the-counter pills. However, I’m not sure I can describe the pain so that others can understand. At times, my skin hurts so much that a sheet brushing my legs or arms brings me climbing from bed to escape. I feel as if my skin is on fire while tiny needles stick into me everywhere. That description isn’t exactly correct, but it’s as close as I can get to the real thing.

         The joint pain compares to that a person feels when he hits his elbow, only it strikes in multiple joints and places and leaves a constant ache between blows. If I were ever pain-free, I would react as the old woman who woke her husband to tell him she was dead.

          “What are you talking about?” he asked. “You aren’t dead.”

          “Yes, I am. I’m dead,” she insisted.

          “You are not dead,” he repeated. “I can see you and hear you.”

          “But I know I’m dead.”

          The husband sighed before asking, “What makes you think you’re dead?”

          “I’m not hurting and feel good, so I must be dead,” was the answer.

         The diseases and pain leave me debilitated. Anyone with just one condition lives with problems others have trouble understanding. How can I illustrate the struggle of getting through a day?

         Everyone starts a day with a certain amount of energy, strength, ability, endurance. Let’s just call those units. A person with a chronic physical problem has half as many units, or less, as someone without.

         On a “good” day, I may start with ten units. A “normal” person might use a tenth of a unit to get out of bed, shower, dress, and prepare for the day. I use two units taking a shower, one to dress, another to brush my hair. Styling my hair takes at least two units and leaves my shoulders and arms screaming in agony for hours afterwards; the pain using more of my few units. Preparing breakfast requires at least a unit.

         If I don’t have to go to the grocery store or somewhere else, I have to decide whether to vacuum the living room, unload the dishwasher (or load it if it’s empty), or start a load of laundry. I’m not able to do all of them, but I can do one – on a “good” day.

         On a not-so-good day, I may start with only five units or, at times, maybe just one. I haven’t found a way to buy or obtain any extra units. But I keep going, at time borrowing from the next day’s units, causing my system to wear down faster and more. Sometimes I don’t have a choice. My husband requires care, and he’s more disabled than I. At other times, I want to attend one of my grandchildren’s activities or go to church. Perhaps prescriptions have to be picked up, or we’re out of bread. Bills have to be paid; groceries bought.

         At night, I’m often too exhausted to cook. A bag of microwaved popcorn is dinner. The leaves accumulate on the drive and yard because I can’t rake and bag them. The house is junky because I run out of units taking care of what has to be done that day. I like a clean, neat house inside and out, but my body refuses to do what is needed.

         How do I feel? At times, I’m overwhelmed, discouraged, hopeless, and helpless; but I’ll try to smile and answer, “I'm okay” as I pray for strength to get through another day. *shrugs* After all, life is what you make it, or rather what I make it.

Looking for more units,
Vivian