I remember one day at the age of 7, waking up and feeling like I hadn’t slept a minute. That day has carried on up until now, and I’ve never woken up with any energy. I was diagnosed at that age with a lack of vitamins, but when taking B12 caused me to gain so much weight, my happiness wasn’t there.
I’ve always lived with a painful digestive system which can make me bloated to the point where my posture is like I am 6 months pregnant. All my life I was exhausted only being diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) at the age of 40, and I am trying to get better painkiller methods for everyone living with chronic pain.
My mom also has all the symptoms of hEDS and has had 3 strokes with a huge hemorrhage in her brain, but all the doctors still refuse to have blood tests done. I have 2 more sisters whose symptoms are covering hEDS, but they refused the disabled label to seek help for the aches and pains! I’ve developed a very difficult eating disorder as its pain and anxiety level based. I’m overweight at the moment because the surgery stopped me from exercising. As the physiotherapist said, ‘some of my pain can be weight related’ but I was appalled at that advice since I can’t treat a genetic disorder by simply losing weight.
I hope my little story helps others not feel alone and isolated.
