I'm sorry to all of you who think I am complaining. I am not doing this to complain, I am doing this simply to help others. I feel that if people read my story, they will know what dystonia is like and people with dystonia who are thinking about DBS will know more about it. As bad as it was to get the infection and have the DBS taken out, it was a great experience because it worked and now I can have it done again but this time know what to expect. As far as my shoulder goes... I am desperately seeking some help. I would love it if I knew how to pop my shoulder back into place. Even when I have a shoulder subluxation not a dislocation it is very painful and wish I could just get some relief. So if anyone has any suggestions let me know!! :)
Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
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