#39 ME/CFS & EDS bedbound for 8 years - Learning to Live Again with Lizzie and Amy Mooney

STORIES: ME/CFS and EDS left Lizzie bedbound for eight years - a mother's fight for answers and a daughter's fight to reclaim independence.

Lizzie Mooney became chronically sick with ME/CFS and Ehlers-Danlos syndrome (EDS) at just nine years old. By 11 years old she was bedbound. She would spend the next eight years in bed, unable to sit upright, and dependent on her mum, Amy Mooney, for almost everything.

Now 21, Lizzie is slowly reemerging into the world she left behind. Building her independence, she has relearned to walk, started exploring her local area and has even started volunteering her time and skills. According to Amy, Lizzie has “moved mountains” to get where she is today, but it is the determination and spirit of them both that has changed Lizzie’s course.

In this episode Lizzie joins her mother, Amy Mooney, an occupational therapist who became her full-time carer. Through trying to understand her daughter’s condition, Amy has become a respected leader in the complex chronic illness space, helping people manage their conditions and improve their quality of life, and educating other practitioners globally.

Together, they reflect on navigating this experience as daughter and mother, patient and carer. They share the years spent searching for answers, the grief of losing childhood and independence, and the slow, complicated process of re-entering the world.

In this episode, Lizzie and Amy discuss:

• Growing up with severe ME/CFS and EDS
• Spending eight years bedbound, including four years completely flat
• Losing childhood, education and independence to chronic illness
• How online friendships became a lifeline
• Tools to maintain a sense of self
• Relearning the outside world after years in bed
• Why contentment became more important than hope

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