In this post Shoaib Chaudhry reflects on what he has experienced from being a member of the first group of Epilepsy Futures participants.
As with everyone in the group, his confidence has grown so much in the last few months, and I think his reflection captures this.
He mentions “Friends Connected” which is a monthly social meet up for people, our counselling service, which is open to people who have epilepsy and other significant people in their lives, and the “People’s Forum” which is a group drawn from people who use our services, carers etc that helps us to develop and maintain services.
He also talks about how he was involved with a recent consultation even to discuss developing a pictorial guide to epilepsy called “Epipicto”. The project is an
Erasmus funded activity initiated through the European Regional Executive Committee of the International Bureau for Epilepsy (IBE) and comprises five partner organisations from Austria, Germany, Malta, the Netherlands and Scotland.
This working party met together here in Glasgow in March to take forward ideas and suggestions about what might help in the production of simple, easy to understand material. Shoaib attended this event along with a couple of other folk from the current group.
When I first started with Epilepsy Futures I was a little scared and excited at the same time.
I had only just discovered Epilepsy Connections a year or two prior and the only services I had used to were Friends Connected and counselling which had help me overcome quite a few things such as my anxiety and depression.
In our first few weeks of Epilepsy Futures we mostly did introductions and learnt the names and hobbies of other people in the group. This helped us get to know names and become familiar with each other.
As time went on ,we learnt various things such as “Diffusing the inner critic” and how we mostly put ourselves down, or think others are talking behind our backs or making fun of us. We learned how to think differently and try to think more positively as time went on.
I think this was one of the things that helped me become more confident in going out more and even volunteering by looking at my achievements and good points
When it came to our “Epilepsy Awareness” section we learnt of different facts like how they are 42 different types of epilepsy and how each one affects a person differently, and how two people with the same epilepsy could have two very different experiences.
We also learnt how they were conditions that imitate epilepsy such as panic attacks and sleep disorders, and of the many different things that cause epilepsy
I learnt how to deal with things such as memory loss and some techniques on improving our memory, which was somewhat useful to me, as quite a lot of people who have epilepsy also have memory problems to some extent.
We also learnt some of our rights as epilepsy patients and how it can be a good idea to make a diary or list of our seizures and things we want to ask our doctors.
I feel that I should of done this as my last appointment with my epilepsy doctor in November 2017 was just the doctor asking if I still had seizure and then telling me I can go.
I walked away with little to no communication that day, I feel I should have asked more about the side effects of some of my AEDs.
I have also contributed to Epilepsy Connections by helping to make a pictorial guide to epilepsy which I felt real honoured to do. Just the fact that it made me feel like I was contributing to a guide in which people with limited or no literacy skills would be able to learn more about their conditions made me feel really honoured – also the coffee was really good,10/10!
I have recently joined a couple of other members of this group in attending the “People’s Forum” in hopes that I could continue to help