Each day with an invisible illness is a fight against my body. I fight to wake up. I fight to make my body move. I fight to get out of bed. I fight to spend time with my family. I fight to think, communicate, read, and write. Through it all, I fight for joy.
My invisible fight begins in the morning when I start waking up around 10:00 or 11:00 am. Every morning I wake up with a miserable, sick, and weak feeling in my body. It overwhelms me, and I start praying right away. I can’t think clearly when I first wake up, so my prayer is usually something very simple like, “Please help me, God. I don’t feel well. Please give me strength. I need you.” Sometimes I go back and forth between sleep and prayer for an hour. Waking up is not easy. It is a fight every morning.
After waking up, I fight through morning brain fog. I read blogs and check Facebook to help my mind wake up. When enough of the brain fog has cleared, I read and study my Bible. This brings me joy, and it helps me to keep life in a proper perspective. After reading my Bible, if I am able to think clearly enough, I like to correspond with friends, write a blog post, or read a good book. I keep resting in bed until the afternoon so that my spoons for the day are not used up too quickly.
Around 2:00 in the afternoon I fight my body to get out of bed. Being out of bed is always hard because my body does not counteract gravity very well (I will tell you more about that fight tomorrow). I walk around the house as much as I can in the afternoon, and this is my daily exercise. It helps me to maintain as much muscle tone as possible, but it depletes my energy levels quickly.
William and Adelaide come home from school at 3:25. They bring such joy to my life, and I fight for time with them. I like to sit with them on the sofa and hear about their day. We do homework together. Sometimes we eat a snack. On the really tired days I lie down on the sofa, and Adelaide and I watch a movie together.
Between 4:00 and 5:00 each day I feel my spoons slipping away. They are almost gone, and I fight to stay up until Will gets home from work. By 6:00 my body is almost ready to give up the fight for the day. I push myself a little longer and a little harder, but by 6:30 or 7:00 I am in bed for the night. My spoons are gone, and it is time crash out and rest up for the fight that is coming the next day. I usually get to spend some time with Will at night before we fall asleep, and this makes me happy. It is the perfect ending to the day!
Each day with dysautonomia is a fight to move and do as much as I can. I thank the Lord for my family and for the help they give to me, and I thank Him for the friends who encourage me in my invisible fight.
The Lord provides grace and strength and joy each day as I face life with an invisible chronic illness. I am grateful to Him for never leaving me alone in my invisible fight.