Carole is diabetic and also has Cataracts. Before the lock-down began she was due to have a cataract operation but it had to be cancelled due to swelling in her eye. It left her struggling to cope each day. In addition, she suffered several bleeds in her eye but didn’t contact the eye hospital as she knew there was nothing that could be done until bleeding stops and she was too frightened to go during the Covid-19 pandemic.
When Sight Support HEY’s Community Advice Officer, Vicky contacted Carole as part of her proactive welfare calls, she heard about the bleeds and was worried. She advised Carole to call the hospital straight away to let them know about the problems and offered her an alternative number to call. As a result Carole was able to book a telephone appointment with a consultants and was told she has dry eye.
“I couldn’t see the board in the test,” said Carole. “I felt really confused and scared. I knew my sight loss was to do with my diabetes and that my cataracts can’t be operated on at the moment but I have no idea what to expect in the future.”
“I felt scared to go to sleep in case I woke up totally blind and I was worried about the possibility of not being able to work after lock down. You need to be able to see to be a cleaner.”
Even scarier was the fact that Carole kept seeing strange people in her room and bugs on the ceiling which would then disappear.
Luckily Vicky was able to tell Carole about a condition called Charles Bonnet Syndrome which is a term used to describe the situation when people with sight problems start to see things, which they know aren't real. Sometimes called 'visual hallucinations', the things people see can take all kinds of forms from simple patterns of straight lines to detailed pictures of people or buildings. Although more common in older people, Charles Bonnet syndrome can affect people of any age, usually appearing after a period of worsening sight.
“I thought I was going mad. I didn’t dare say anything even to my family or friends,” said Carole. “So I was very relieved when Vicky explained about Charles Bonnet Syndrome. It doesn’t stop the hallucinations which are still scary but at least I now know what it is and that it’s related to my sight problems.”
Vicky continues to call Carole regularly and ensure she receives information to help her with her sight loss.
“Your calls have really helped,” said Carole. “I can’t wait until we can actually meet in person. What Sight Support HEY does for people like me is fantastic.”
More information about Charles Bonnet Syndrome is available from Esme's Umbrella - a charity which supports people with Charles Bonnet Syndrome.