Hi I’m Robyn and I found this wonderful charity when I saw a post asking if anyone would be interested in hosting a coffee and catchup event in their local area. A year previous I had been diagnosed with impending Cauda Equina and received emergency surgery, a story most of us are familiar with; so I decided I could host an event in a bid to meet other people who were in the same boat as me. On the day I sat there waiting, expecting people to turn up with sticks and crutches and wheel-chairs; but soon realised as people introduced themselves just what a hidden disability Cauda Equina Syndrome (CES) can be. But just how encouraging it can be to meet with others who daily battle the ongoing effects of CES, who keep smiling, keep laughing and keep going head long into enjoying life in spite of the daily struggles with CES and all it seems to keep throwing at us.
I have been so encouraged by Claire, Gail and Paige as we have attended events put on by the charity and support those who live their lives supporting us.
I have been really fortunate to have an amazing husband, who has supported me through surgeries, hospital appointments and the highs and lows of living with CES. Together we have attended events, and last year he helped a few of us who have CES to get up Moel Famau in North Wales in a sponsored walk to raise a few pennies for the charity, but also to achieve what we thought would be impossible. He reminds me to keep dreaming and making plans and together we achieve what sometimes seems the impossible. Gary has been able to talk to other partners and friends of those with CES and often comes to the Coffee and Catch up events to offer his support.
None of us would choose this journey, but we can choose who we travel with and surround ourselves with others who can support as we go.