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Pain. 10 years of constant pain and the inability to do anything about it while everything and everyone moves forward around me. The helplessness is annoyingly demeaning. Having no one capable of even a complete diagnosis of the problem. The imbeciles that do not understand the complexities of disability. The inability to tell someone what real pain is like. Right now I have shingles. People talk about this being painful. The inflammation makes my real pain a little worse, but the the skin stuff; I don't even register that. Breaking ribs made me feel better. Breaking my scapula in 3 pieces was a minor nuisance of not lifting my arm for a few weeks. Real pain is WAY beyond these things. Real pain is when you can't hear your inner voice over the white noise at all. When your only choice is to lay in bed and hope that next month will be better. It is not having slept more than 3-4 hours every day in the last 2 weeks. It is not having slept more than 5-6 hours per night in the best case in 10 years. It is being totally alone and watching the world crumble around you. That is what I find annoying.
do a sleep test in a professional lab
Staying in any position for too long is a major problem. I must remained totally unimpeded. Sleeping aids make my problems worse.
I'm living with a similar condition and have been through many of the same experiences with weeks of pain and no sleep. While I'm extremely lucky in that my pain usually responds fairly well to medication, I absolutely understand how you feel.