I went to my first support group meeting last week and I was so excited to meet others with Cauda Equina Syndrome. It was held at the Mountsorrel Centre in Loughborough which was a great location! It was accessible for my wheelchair and I appreciated that it had a decent sized lift to get me up onto the second floor where the meeting was being held. The toilets were great for those with a disability and there was disabled parking near to the entrance.
The meeting was situated in a medium sized room well suited for the occasion. The room wasn’t overwhelmingly big, but large enough for easy mobilisation for anyone with issues, perfect! Circular tables were surrounded by chairs so people could mingle with ease, and there were quaint sandwiches, scones, teas and coffees for everyone to enjoy. My Mum, who is also my carer, certainly enjoyed that part of the meeting!
She commented, “It was an unexpected treat to have such a lovely afternoon tea and to feel so welcomed.”
In the corner of the room there was a table set up with all types of products for intermittent self-catheterisation, all provided by the company Hollister. Jonathan Harper from Hollister was a very down to earth, kind and knowledgeable, young man. He made it very easy to talk about personal medical issues. I’m not very good at talking about things like bladders, but he made everyone feel so comfortable. I was so impressed by one of the new female catheters he had on display, called the Infyna Chic, I have decided to talk about it in depth. Ladies, it looks like a pink mascara wand, so if it falls out of your bag no one will know it’s a catheter…how cool?!
***When I started writing the blog I came to photograph it and my cat Toulouse waltzed in the room holding it in his mouth playing with it. I should tell you they make great cat toys once you have finished with the catheter inside!
Claire Thornber, founder of CESA was also there. She runs the support services and travels around the country trying to bring hope and support to all those suffering with CES. It is so great to have the founder on hand to pick her brains about Cauda Equina. She is the most knowledgeable person I know about our condition. When you attend a meeting make sure you have a conversation with her because I know from personal experience how valuable her help can be. She is so lovely and doesn’t get embarrassed talking about anything from bladders to sexual dysfunction. She’s great.
In summation, I believe that anyone who has suffered Cauda Equina would benefit from coming to meetings. The main point of the support group is for people with CES to see they are not alone. I suggest that you join the CES map (if you haven’t already) and get in touch with those in your area, who also have Cauda Equina and try to come to a meeting together.
I was apprehensive before I went into the Mountsorrel Centre. I wondered if people would stare if they could see I was in a lot of pain or if needed to take medications. I was nervous that if I was incontinent people would notice and I also feared that I had nothing to offer the group. The thing is everyone in that room feels the same way at first. If you are struggling with pain etc you are amongst your peers, we are all in the same boat. There is no judgement whatsoever! You can bring a pa or carer, if you have one. You can bring family and friends too. Just let us know ahead of time so we have enough room. Whatever enables you to get you through those doors we will try to accommodate. You will leave with a deeper understanding of your condition, as well as new techniques to help you cope. Most importantly you will leave with new friends.
I really hope to see you soon at one of the meetings.
Why not get in touch and tell others about your experiences at CESA meetings (if you have already been to one). Or, if you are nervous about attending one, you can get in contact too and we can talk.
Keep looking on the website and Facebook group for new dates and locations.
Until the next time,
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