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.
Well, humanly…the answer is no one. We all know that everyone counts on Mom to care for everyone around her, but there is no one to take care of Mama. Okay, in all fairness, I can count on one hand the times I have been sick to the point I have had to go to my bed. In those instances, I get pampered for about twenty-four hours and that is it! Sympathy over! The questions start coming like, “When are you gonna start feeling better, honey?” “What do you want to do for dinner, Mom?” I know that after that one day of being snuggled in my bed, I better get up and back to the normal routine whether I feel like it or not. I firmly believe that only mothers have been given the gene to care for those around her. My husband…not so much.
Today I am very proud of myself. Today I am caring for me. I’m taking myself to my annual appointment that all of us women are supposed to be going to. For so many years, I skipped these. I knew they were important to go to, but when an EDS Mama is taking her child to multiple appointments a week, it is easy to cross these seemingly extra ones off the calendar. See, a mother puts her children first. We go on the back burner and trust that God will take care of us. And He does. I know He took care of me for many years in spite of me not taking care of myself.
I know these are important annual appointments and I also know that when I take care of myself, in essence, I am also caring for my family. You want to take care of your family, EDS Mama, but are you caring for you? Your loved ones likely want you around for a LONG time!