In June, I received my official diagnosis of Ehlers Danlos Syndrome after spending years in agonizing pain. I left my full-time position as a restaurant manager for a variety of reasons, but the biggest was the inability to do my job effectively due to my pain. I have worked with doctors to find a treatment that would work, but I’ve only digressed physically, mentally, and emotionally. I’m standing on a ledge between functioning in my body and accepting life disabled.
Since my official diagnosis, I have experienced greater fatigue, more pain, and the number of joint dislocations increase. I’ve gone from being able to walk unsupported to living my life with braces to help keep my joints in place. I have been told that I need to accept that my body is going to continue to decline and where I can wear braces now to assist in stabilizing my body, they will eventually be replaced by canes, crutches, and a wheelchair. This is not the life I have planned for myself or my children and I’m not willing to accept defeat.
Just like good foods nourish our bodies and promote healing, strategic exercise will retrain our muscles to do more work than they thought possible by stabilizing our joints to prevent dislocations. This isn’t an overnight approach to Ehlers Danlos Syndrome and few people have gone before me to make these same changes, but those who have no longer need a wheelchair to experience life outside of their home.
Right now, I am unable to work. I have to pick and choose what tasks I will accomplish in a day based off the amount of pain I experience upon waking. There are some days when my pain is so high; I am already approaching 9′s and 10′s with nausea, the inability to think coherently, and predominantly bedbound. This is not the life I want for myself or my children, but I need help changing what I’ve been told is my destiny.
I’ve built a holistic approach to my body that will retrain and strengthen my muscles, provide joint stability, and increase my ability to contribute to society. If all goes as planned, at the end of 60 days in the gym, I will be able to return to work at least on a part-time basis. If I can make these changes in my life, I can teach others with Ehlers Danlos Syndrome how to make these changes in their lives and empower people to change what medical professionals deem the only solution possible.