There are two things I hate the most about my disease.
I hate not knowing how well my body will function from day to day. Never being able to make plans and not panic that I'll be broken down that day. There are only two things in my life right now that I "make myself do" no matter how bad it gets. I go to all my son's baseball games and practices. (now ask me if I've ever had to go to the van and lay down....um yes.) I go to work two days a week for 3-4 hours. (now ask me if this is easy? ask me if I've ever sat down or had to leave early....) You might ask why I force my fibro riddled body to go through that? Well the answer is quite simple really. To feel normal. To have something in my life that I can grasp on to that seems like me. The me that still resides in this broken down body.
The second thing I hate is that nothing I do to feel better works twice or for very long. No medicines no method or theory ever continues to work. I can eat green beans for dinner, take a long hot bath, stay away from caffeine and take two Tylenol pms at 9 and go to bed at 9:15. The next morning I feel like a million bucks. I do the same thing the next night, NOTHING. The doctor gives me a miracle drug,,, it works for a couple months, then nothing....
Yet, even as I face these difficulties, I am reminded that this is my life, my body, my one chance. There are no do-overs in life. I have to make it as beautiful as I can.
"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering." ~ Ben Okri