Life With MS Fatigue Feels Like a Story for Oprah
I hate when extreme fatigue messes up my whole day. Today is no different. I had things to do. A list of places to go and people to see.
Trying to still be at peace
But now I’m sitting on my couch while flawed ideas are running laps in my mind. Thinking the approaching hours might bring on doomsday. I sense it threatening me. But strangely, I also feel safe. Believing happiness can’t be that far away. So, I look for a retreat. A method to turn my back on the chaos. I close my eyes. Attempting to enjoy my brief vacation in my mind. But it’s hard to appreciate a mental holiday when the Presidential suite isn’t handicap accessible.
Mad at the world. Planning my revenge. Mama told me to kill them with kindness. So, I smile through the pain. But that’s because I’m not sure who to blame.
I try to watch a movie. But the television is watching me. I remain silent and motionless for multiple minutes. I can’t move. Just thinking, blinking, and breathing. Anticipating each inhale will bring me closer to relief. Even though I’ve been here before, I’m still scared. But calm. I take deep breaths. Remembering it usually doesn’t last long.
Having intense exhaustion
It’s a story so wild I could have told it to Oprah. But how would I describe the sensation I am experiencing? The life-changing anguish I am facing.
Having intense exhaustion is like flying close to the sun. I feel that heat multiple times a year. Most will not identify with that kind of pain until that fire burns them. Or someone they love. They will not understand that part of my novel. Because I live in a realm of black and white. While the rest of the world is existing in full living color.
I stayed planted on that couch. At the devil’s satisfaction. Wishing for support. Silently screaming for relief. Then I heard a voice from across the room. It was my husband asking me if I needed help. His words sounded like a sweet love song. I didn’t answer him. I couldn’t answer him. But why would he expect me to respond? I had been awake for over three hours and was drained. This was my normal.
Help from my husband
I sarcastically thought, “Doesn’t everybody collapse from fatigue after eating lunch?”
He saw I was struggling to stay sitting upright. He quickly approached the couch. Picked me up and carried me into the bedroom. Then, as gently as possible, dropped my dead weight body onto the bed like a sack of potatoes.
He took off my shoes. Took off my clothes. Took off my glasses. Positioned my legs and arms. Covered me with a blanket. Turned off the lights. Turned around and left the room.
It was 1 p.m. in the afternoon.
Not wanting to let him down
I hate to let him down. We had a whole day planned. We had a whole weekend planned. We had a whole life planned.
And not fulfilling those plans make me feel like I’m merely existing to be a story for Oprah.
Were you misdiagnosed with something else before receiving a MS diagnosis?