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 a fair amount of 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 and teas and coffees for everyone to enjoy, free of charge. My Mum, who is my carer (or personal assistant whichever verbiage you prefer), certainly enjoyed that part of the meeting! I couldn’t eat much because of pain, but my Mother informs me the food was delicious.
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 to aid in intermittent self-catheterisation, all provided by the company Hollister. Jonathan Harper was the Hollister representative and was a very down to earth, kind and knowledgeable, young man. He made it very easy to talk to him about personal medical issues. I’m not very good at talking about things like bladders and urethrae, but he made everyone feel so comfortable. I gained a lot from his suggestions once my embarrassment was out of the way. I was so impressed by one of the new female catheters he had on display, called the Infyna Chic, that I have decided to dedicate a whole blog 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 about the catheter I came to photograph it and my cat Toulouse waltzed in the room holding it in his mouth and began playing with it. I feel I should tell you they make great cat toys once you have finished with the catheter inside!
Claire Thornber, founder of CESA was also in attendance. 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 and especially what to do after you get the diagnosis of CE. 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.
A lady was there to do a presentation about the extent of the medical ramifications that her delayed decompression of Cauda Equina instigated. Her honesty and desire to prevent others from going through the same thing, made her talk my personal highlight of the day. Coincidentally, I am currently experiencing a number of the symptoms that she described after having her spinal cord decompression. Her talk significantly helped me with dealing with my current situation and I am very grateful. I think her talk will help a lot of other people too, we all have a lot to learn from her bravery and strength.
Ginny Atchison was also there for the attendees to talk to. Ginny is an administrator on Facebook group and is very interested in helping people with the emotional and psychological effects of Cauda Equina. As anyone who has had Cauda Equina Syndrome will tell you, it can be a lot to cope with mentally. The pain and the way it changes your life can be upsetting and stressful, especially if you are also dealing with clinical negligence at the same time. Ginny is very open and kind. She is quick to offer help and support. I found it very easy to talk to her and I gained confidence throughout the meeting because she included me and my Mother in conversations.
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 kin-folk, we are all in the same shoes. There is no judgement whatsoever! You can bring a personal assistant, if you have one. You can bring family and friends too, just let us know ahead of time so we have enough room. Whatever makes you feel most comfortable to get you through those doors we will try to accommodate because you will leave with a deeper understanding of your condition, as well as new techniques to help you cope and 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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