Life in a box
I have been sticking pretty close to my online support groups for both Mitochondrial disease and Shwachman Diamond. It's not that they solve any problems for me but there is a comfort knowing that all the flood of feelings I experience from one moment to the next are normal.
One mom today, wrote a message to someone else in the mito group. She verbalized so well what I feel all the time. She talked about how she keeps her life in 'boxes'. The boxes contain emotion too overwhelming to deal with.
I keep my own life compartmentalized. I think it's the only way to manage everything. I guess the perfect example is my blogging. Three separate blogs with completely different content. In addition to all these blogs, I have two or three different journals with even more thoughts and feelings, different from anything read in my online world. It may seem strange but it helps. It keeps the chaos controlled.
When it's time to deal with one part of my fractured life, I can carefully lift the lid and let a little escape at a time rather than balancing all the little parts at once.
This same mito mom who I read about today also suggested that coping with the unknown is a skill. Like anything else, it takes practice and practice makes perfect. I can not visualize the day when I will not be thrown by a new problem, a new diagnosis, a new worry and unknown of living with rare, chronic disease. I have no idea if I will ever see that day but each setback is a chance to practice increasing my faith and starving my fear.
One mom today, wrote a message to someone else in the mito group. She verbalized so well what I feel all the time. She talked about how she keeps her life in 'boxes'. The boxes contain emotion too overwhelming to deal with.
I keep my own life compartmentalized. I think it's the only way to manage everything. I guess the perfect example is my blogging. Three separate blogs with completely different content. In addition to all these blogs, I have two or three different journals with even more thoughts and feelings, different from anything read in my online world. It may seem strange but it helps. It keeps the chaos controlled.
When it's time to deal with one part of my fractured life, I can carefully lift the lid and let a little escape at a time rather than balancing all the little parts at once.
This same mito mom who I read about today also suggested that coping with the unknown is a skill. Like anything else, it takes practice and practice makes perfect. I can not visualize the day when I will not be thrown by a new problem, a new diagnosis, a new worry and unknown of living with rare, chronic disease. I have no idea if I will ever see that day but each setback is a chance to practice increasing my faith and starving my fear.
I don't blame you for writing so much about things. I bet it's good therapy! And I hope that Spencer can have some success with the treatment you're trying. You guys need to have good things coming your way!
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