I have been called many things in my lfe, but a loose woman???
That in the literal term, I am not. But in the slightly bendy imagination of mine, I did always feel that I was loose limbed.
It wasnt until last year that I finally had a diagnosis of Ehlers Danlos, at the very very young age of 60!!
I guess in the old days, there was not enough known or anything known about EDS, so the fact that i didn’t start walking until nearly 2, and the fact that I walked around on my knees, didn’t really set any alarm bells off. Although in asking my 88 year old mother about my oddities, she did say that there was something different about me Thanks Mum.
I had special shoes designed and made for me and I could do weird things with my joints - a party trick or two up my sleeve! Never mind the damage I was probably doing
After numerous surgeries on my ankles, feet and wrist, and the occasional hint from the surgeons that I was hypermobile, I was finally diagnosed last year, at the age of 60!
Now, I am in constant pain, and still learning about all the other aspects of hEDS - mitral valve prolapse, POTs, cysts, kidney stones, intestinal issues and the list goes on.
I feel totally unsupported by the health professionals in that I do not have someone who I can seek support and information from. I am in the process of having ECG’s arranged and a TILT test done but nothing helps the absolute exhaustion and chronic pain.
I love gardening, walking along river beds but this has all come to a halt. Aquatherapy helps, but one class in a week, is more than I can manage.
Would so love to be able to talk to someone of a similar age and who has walked the walk, or is walking the walk. Hope we could encourage one another or offer advice to each other.
I have rambled for too long, but it so all encompassing at times.
