A Mothers story…

26th February 2019 - Posted by Claire Thornber

My Daughter suffers with the permanent effects of Cauda Equina Syndrome – low back pain, bowel and bladder dysfunction, weakness in her legs and sexual dysfunction. Many of her symptoms are not visible so it’s hard to imagine the level of pain and discomfort she experiences daily.

One of the biggest challenges for me, as a mother, has been ‘acceptance’ of her condition. Six years ago my Daughter lived alone, had a good circle of friends, went on foreign holidays and enjoyed going out socially. She worked full time as a support worker – now she is the one needing support! She had no choice but to give up work which in turn has brought financial difficulties.

I can’t pretend my daughters condition hasn’t changed our lives, because it has. Her condition affects the whole family. Coping with the day to day challenges of her condition can be overwhelming and difficult. Nothing prepares you for your loved one to be affected with a life-changing condition. You don’t get better at coping with it , you just get better at handling it – time management, the financial costs, the emotional and physical demands. I have become her main carer and I can’t deny her condition puts stresses and strains on me. Trying to keep her motivated when things get too much for her, keeping her focused, suggesting ways to set targets and to keep pushing boundaries. I help daily with cooking, laundry, shopping, housework, driving her to appointments etc.

I can do all that willingly, but what I cannot do is to take her pain way and for a Mum that is heart breaking.

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