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New to EDS
Hello Everyone! I was just preliminarily diagnosed with hEDS and possible classic EDS. I’m 43, mother of two young children (ages 2 & 6) and have had health and pain issues my entire life. This diagnosis was vindication that I’m not crazy.
Friday, I had physical therapy. I have subluxations in both knees, my pelvis and my jaw. I’m now wearing braces on my pelvis and knees as well as walking with a cane.
I’m having difficulty reconciling that I can’t be the type of mother I want to be. My body is in an extreme state of stress right now, so any activity with my children is next to impossible. I adore my husband, but being intimate is also impossible right now.
I feel like I’m complaining when people ask how I am feeling. I’m not actually complaining, I’m stating as a matter of fact where I am today. I’ve started just answering with “I’m okay,” because most people either don’t want to hear about it or can’t handle it.
On top of this, I received my preliminary diagnosis a month after my beloved father passed away. I miss him beyond words. He was a rock for me, especially during times I’ve been in pain.
I used to be a highly functioning multitasker, physically active and independent. Now I have brain fog, aphasia, extreme light sensitivity and full body pain. (On top of hEDS, I have a spinal AVM in my neck and lesions/scar tissue in my lumbar spine from 2 CSF Leaks and 15 epidurals over 2 years.)
Thank you for letting me introduce myself and vent. Attached is a pic of me and my daughter.
