What is it like to have Mitochondrial Disease

As I go from day to day, I often forget what it is like to not have Mitochindrial Disease. When I leave home, I always have a gallon of water, food, earplugs, a hat, sunglasses, emergency medicine, a jacket, my ventilator and tubing, my wheelchair, and a pillow. All these items are essential in my life--water for my diabetes insipidus, food because I have allergies to many foods, earplugs because my brain becomes overstimulated by noise, a hat and sunglasses to block out bright light, medicine in case I get sick, a jacket because I am usually cold, my ventilator and tubing so I can breathe, my wheelchair for mobility and a pillow because I often need to lay my head down due to fatigue. I marvel at people who can hop in a vehicle and go. No planning. No thought of what happens if they get hungry or thirsty or cold. They just go.

I also marvel at what people do in a day. I hear people say they went to the grocery store, stopped at the post office, picked up dry cleaning, stopped at the pharmacy, had lunch with a friend and then went to work. Wow! You did all that in a single day!? On a good day, I can go to the grocery store, but then I need a few days afterwards to rest. I can't imagine doing all these things and then having the energy the very next day to get up and move around.

I have had several friends at church invite me to events after service. I always politely decline and then wonder what it is like to have energy after attending church. By the time I exit church, I am nearly shaking with fatigue and feel as though I am using all my strength to keep my eyelids open. When I get home, I go to bed for the rest of the day. I am absolutely exhausted.

It can be quite depressing having Mitochondrial Disease, thinking about all your symptoms and health challenges. The one thing that keeps me going is my relationship with Jesus. There are days when I am overwhelmed with this disease and want to give up and quit. During these times, I send a prayer up to God, "I am just letting You know, I am ready to leave this world at any time. You know where I am at if You want to take me Home." The thought of going to heaven and not having Mitochondrial Disease brings tears to my eyes. Oh, how marvelous it would be to be free from this all...to be free from all sin, to not have to suffer any more, to not be burdened by this illness.

The thought of heaven keeps me happy and keeps me motivated each day. I think to myself, "Well, God is allowing me to spend another day on this earth. I should try to make the most of it. I should try to be the best person I can be, sharing God's love and sharing the message of His Son's incredible sacrifice on the cross to save all of us from our sins." God has given us the hope of heaven through His Son, Jesus. I hope you have trusted Jesus to be your Savior. I hope you have chosen to go to heaven. "For God so loved the world, that He gave His only begotten Son, that whosoever believes in a him should not perish, but have everlasting life. For God sent not His Son into the world to condemn the world; but that the world through Him might be saved" (John 3:16-17).