health issues

My Hope for Normalcy

“What is a day like for you?”

“What is a day like for you?” This was a question recently asked of me on my application for disability. It had 3 lines for me to answer. Seriously? Did they really want to know or did they only want to know what 3 lines could entail? I should have written “see attached” and added a book for them. Had I done so, they would have known that I never know what a day for me is going to be like. I can not make plans because of this very reason. Making plans, having an appointment on my phone, getting that alert a day before, it all throws me into a panic attack. And I know my panic is due to real things that could happen, but also may not happen. My mind begins swarming with sentences like a tornado, spinning around in circles yelling at each other in my brain: “What if you can’t wake up?” “What if you hurt too bad to put clothes on?” “What if you’re not alert enough to drive?” “What if you get there and can’t get home?” “What time do you have to start getting ready to get out of the door?” “What if…..” It never ends. This is my life… Doctors run every test and say “It’s fibromyalgia. It is what it is. We can just control your pain. Do what you can do while you can do it.” When I CAN do things on a good day, I do as many things as I possibly can because I don’t know when my next good day will be. I do so much that I overdo it and then I can’t do anything. God forbid I have a few good days in a row… Then I may fall asleep on a Tuesday and wake up on a Friday. But nothing can be done. They just pile on the pills. What is a day like for me? I never know. I hope for the best but plan for the worst. I keep food close in case I can’t get up. I thank God for having my granddaughter here because if it weren’t for her I probably would do absolutely nothing. She forces me to do, to be, to live. On days when it’s an all day bed day, she curls up with me and watches TV or her iPad. She never complains. She is my reason for waking up every day. With my son playing soccer, I’ve had to now get out of the house and attend his games. I’m so glad to see him but it’s so hard to get ready, get out of the house, drive, walk to the seats, sit that long, then drive home. I try so hard because I miss him so much. I try to see my daughter at work as much as possible. It’s never enough. None of it is ever enough. I wish so much I could provide for them what they need, but as I type this, I can barely even move my arms. How could I possibly ever be what they need? These are my constant thoughts, especially at the end of the day. My depression. This is my life…
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