STITCHER'S STORY

Caroline Beacon, owner of Sew Ab Fab, shares how sewing has helped her to find a new purpose when a difficult diagnosis threatened to change everything

I 'm 49 years old and I live in Rutland. In my late 20s/early 30s, I was working as a veterinary nurse in Hampshire and living with my boyfriend. I lived the typical life of many young people, working hard and enjoying my spare time socialising with friends on an evening. However, that was all set to change.

I started to feel unwell, with chronic pain, joint subluxations, dizziness and absolute exhaustion. At first, I didn’t pay too much attention to these ‘niggles’ but suddenly, around my 30th birthday, I could no longer ignore the signs that something was wrong. I could hardly walk, had bowel and bladder issues and I had suddenly ended up in a wheelchair. I could no longer work, I slept for hours yet was constantly exhausted and my relationship was under pressure, but the hardest thing was that no one seemed to know what was wrong. I saw doctor after doctor, was passed from pillar to post undergoing test after test. In 2008, after six years, I finally received a diagnosis – I had Ehlers Danlos Syndrome (EDS).

EDS is a group of rare, inherited conditions that affect the connective tissue. Connective tissue provides support in skin, tendons, ligaments, blood vessels, internal organs and bones; it also has a major effect on your autonomic nervous system. Ehlers Danlos is often named an ‘invisible’ disease – those around you can’t see the signs and symptoms but underneath they are ravaging your body. I spent my days in a wheelchair struggling to push past the pain and joint subluxations, constant dizziness and fatigue. I could no longer work and had to quit my job as a veterinary nurse and, added to that, my relationship crumbled. At the age of 31 I lost my home and former life and moved back in with my parents.