I was driving alone in my car recently, savoring the freedom to turn the Christmas tunes up as loudly as I wanted. It hit me for a moment that living with a person who has Postural Orthostatic Tachycardia Syndrome has had an impact on the musical enjoyment in our home. See my daughter was always musically inclined and used to be heard regularly singing or playing the piano in our home. Her siblings would reach their limit and often ask her to stop singing. When she became sick however, oh how I yearned to hear her sing again year after year after year. What used to be a mild annoyance at times now was a gift I treasured and missed.
Not only did she quit singing and playing the piano, but she also had zero tolerance for noises. POTS has a way of making a person highly sensitive to sounds; she gets overstimulated very easily. Where once we had lived in a very music filled home (my children play several different instruments), now our home was extremely quiet. I stopped playing my piano, a form of relaxation I had previously enjoyed.
It seemed to me that my daughter has not been so irritable about noises recently, so I questioned her if she had noticed some improvement in this area. She looked at me with an expression that said, “you just don’t get it, Mom” and replied that she had not seen any improvement but she was trying to be more tolerant than she had been over the years.
As part of MY growth of moving forward, I’m trying to incorporate some music into my days. Music has a way of ministering to my heart. I love playing songs through my phone in the seclusion of my bathroom while I get ready in the morning. Every chance I get to be alone in my car, I play whatever I feel like and as loudly as I want it! How about you, EDS Mama? Are you existing in a dark, quiet world? Try putting on some headphones and spend some time in a colorful, melodic world.