Last week we held our 10 year anniversary support group meeting. 30 members of our CES community headed over to The Malmaison Hotel in Liverpool to meet up with other people suffering with the condition. We enjoyed a lovely lunch followed by a group discussion about everything CES related, including some important input from guest speakers. Some of the attendees travelled all the way from London, Surrey and Ireland! Which goes to show just how important our work is and how important it is to get everyone together to talk, share and feel less isolated. The meeting wasn’t just for CES sufferers, friends and family were also invited. One of the attendees said ‘I’ve learnt more today in these few hours than I have in 14 years of going to hospital appointments with my wife’. We will continue to hold these support group meetings all over the UK over the coming months and years.
Here are a few of the discussions that we found interesting for anyone reading this who couldn’t make it:
- Did you know that 95% of the serotonin in your body is made in your gut? This is the ‘happy hormone’ that is responsible for your mood. Low amounts of serotonin in your body can be related to low mood, depression and anxiety. We didn’t realise just how important it is to have a healthy gut. You can increase your gut health by eating a healthy diet, drinking lots of water, taking prebiotic and probiotic supplements and eating probiotic foods such as yoghurts. A really interesting book that explains this in detail is called ‘Gut’ by Guilia Enders.
- For long term CES patients, it’s important to regularly review your medication. Some patients are discharged from hospital with a list of medication as long as their arm. It’s really important to look over this list every so often to check that everything you’re taking is still needed and it’s not just habit.
- If you’re still experiencing bladder and bowel problems and haven’t been referred to a specialist team by your doctor, it’s important that you ask for this help. If needed, they can refer you to the urology and continence teams who can give you advice about the different types of equipment and methods to help with your continence needs.
- As a charity we can offer you funded counselling. We have both psychosexual and psychological counsellors who can help you talk through relationship issues, sexual issues and dating with CES issues as well as any mental struggles you might be facing at the moment. If you would like to be referred for any of these services, please contact our client referral manager – [email protected]
- One member mentioned how useful she has found having an ‘access card’. Lots of the group didn’t realise this existed, but it’s a card for people living with a disability. It not only informs the event provider with info about your condition (without having to go into detail) so that they can provide support for you, but it can also be used to get discounted prices for things such as shows and events. One member used her access card in Italy and got fast tracked to the front of the queue at Italy’s best tourist attractions! For more info, click on the link – Access Card – Making access easy
