I decided that when Maggie nudged me into creating this blog that I wouldn't turn it into a poor me festival. Sticking to those guidelines has been easy, the tendency to cover up my issues and suck it all up has become second nature. My brain has plenty of time to think about how Ehlers-Danlos has effected my life and I don't have many people to talk to about it. So why then, when having so much to say about my special condition, am I afraid to write it down. Maybe sharing my torment could help someone else who is stuck in this syndrome or help another who cares for someone in my same predicament.
Ehlers-Danlos Syndrome. Hmmm...... Type III, Hypermobility type. That's me. Actually, there is a whole lot more to me than this disability. Reminders that EDS isn't my title, character, or societal definition takes serious commitment. Wrapping myself in a day of pain, the piercing pain in my sacrum. Every second is a bucket of pain, pills, and desperation. Telling Forrest that EDS has become my definition of myself, who i am, and where I am or not going. It's strange, the hurt has been so prevalent for so long that I never know what is really hurt, and it takes something crippling, popping, cracking, mis-aligning, searing, or stabbing to get my specific attention. Attention to details, that is more my game. The overall picture hurts undoubtedly and acknowledgment gives the pain power. So powerful that if not suppressed and ignored surely begets my disabilities definition of myself. I am pain, I am Ehlers-Danlos Syndrome Type III with fibromyalgia, scoliosis, and chronic myofascial pain syndrome. There has to me more.
The guy in the picture has extreme skin hyperextensity, I think I have seen him on TV in a freak circus. Yet again giving bad information for the world to misunderstand our situation. At least he is making a living at being EDS inflicted. We could all be so lucky.
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