I thought it would be an interesting exercise to spend a couple of days really tuning into my body and document every physical sensation, and some of the accompanying thoughts, to develop total awareness of my natural coping strategies dealing with my EDS symptoms. It was an eye-opening experience as it made me realise just how much I have been operating on auto-pilot for so long, just getting through each day as best I can without really being aware of HOW.
Some of these symptoms have been going on for YEARS! I’ve had the migraines since I was 17, the weak bladder ever since I was born (and having 3 full-term pregnancies hasn’t exactly improved that!), the lower back pain since I was a student in the early 90s. But a lot of the more ‘minor’ aches and pains I was never really fully aware of until now!
My sister has the same genetic condition as me and my children (Ehlers-Danlos Syndrome). She strives hard to live a normal life as much as possible and has such a strong spirit!
She has worked so hard over the years to make the best of what cards she was dealt with, but sometimes we all need a little help in life too! In order for her to treat some of her symptoms, she is having to have multiple painful surgeries over the next year, but the NHS don’t fund them either!
The doctors, media and news have been lying to us:
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A couple of days ago, my two sons and I went to see a genetic specialist, who confirmed a diagnosis of Ehlers-Danlos Syndrome. To quote EDS UK, this is “… a genetic connective tissue condition that is a multi-systemic syndrome. Connective tissue covers over 95% of your body so there is little that escapes the symptoms. ” It’s been described as a genetic ‘defect’ or ‘mutation’, and one of the diagnostic signs is that it makes our joints extra flexible, so we can bend them beyond what is considered normal.