I spend my life struggling to know what to say to people when they ask how I’m doing. I usually say I’m fine because I don’t want to bring the conversation down. But, a lot of the time I’m not fine and I think it’s important for me to acknowledge that. I’ve only recently been able to take that next step in my rehab by doing voluntary work and things I couldn’t have dream’t of doing this time last year. Why? Because I have finally accepted my condition and not hidden it away.
This is my poem for all those people with CES who identify with some or all the things I’m going through. I want them to know it’s ok to talk about these sensitive topics and I hope that it makes them realise that they are not alone when they read it.
People can always contact me if they wish to talk. I want to help! Similarly, I hope people without CES get an insight into the emotional ramifications of our condition. When a life suddenly gets turned upside down by Cauda Equina Syndrome I feel it is essential to have not only a physical rehabilitation but an emotional rehabilitation too.
The real life consequences of CES have, in my opinion, been disregarded in most patients’ care that I know of.
CESA and Cauda Equina Champions Charity are working on changing that. We want to better equip patients with physical & emotional tools to best support them in their rehabilitation.
Thank you for taking the time to read this. I hope you get something positive from the poem.
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