The invisible and the pain.

Ehlers danlos and hypermobility syndrome. What a mouthful! I suppose it needs a really long name because it covers a multitude of symptoms! The collagen, which is at fault ofcourse, is not only in skin, in joints, but in every part of the body, and so it affects all kinds of things. The thing is, it is largely invisible, and so if you do not walk with a stick, sit in a wheelchair, or wear splints or supports, others do not realise what problems you have. If you think about it when a joint over extends, or bends in a way it is not meant to, it will become worn and pain is bound to result. If the organs of the body are affected, which they frequently are, you can have all kinds of problems with your heart, stomach, bowels, bladder. After all if the walls of, say the bladder, are stretched you can well imagine the trouble it could cause, lets just say Tena lady and leave it at that. I have had physical problems since childhood, especially with my joints, my knees would swell up and be painful but my doctor would diagnose fluid on the knee. I would go to school with a leg bandaged from ankle to thigh! My joints have always sublaxed, or partly dislocated to those who are unaware, and I would find my hip would give way whilst walking home from school, making me fall to the floor. The lollipop lady often picked me up when I suddenly collapsed in front of her, and sat me on the concrete bollard at the roadside until I got myself together. She presumed I tripped I expect, but I did not, my leg would just give way underneath me, and would not support me. There was nothing I could do to stop it happening. I would tell my mom, but she just thought I was clumsy and kept tripping over my own feet! The number of times my knee or ankle has given way, quite a few times I have plunged down the stairs, unable to save myself or stop it happening. These days I have a rail either side, which I cling on to as I walk downstairs carefully. My hip is often very painful, especially if it has sublaxed just because I turned over in bed! I walk with a stick now, my ankles and knees often "go" and so it is easier and safer, I don`t want to fall. My spine is unstable, and painful all the time, not helped by a fall I had some years ago when I slipped on black ice. Now I have trouble with such a lot of joints, I can only raise my left arm some of the way above my head as the shoulder is hurting these days. My fingers ache and I can no longer sew as I used to do. It is easier to type than to write for too long holding a small pen. I can not stand in the kitchen making the elaborate cakes I once did, standing causes my back pain to go into overdrive and my fingers are unable to squeeze a piping bag to ice the cakes. My mobility is severely restricted, walking causes such pain it is easier not to do it. My life is a world of pain that I try to hide from others, I do not want those I love and who love me to know my suffering.