As I sit down to write this my hallucinations are no better.
They are still with me during all waking moments and those ‘awake but sleepy gaps of the night’. I have not yet found a way to escape them but I have definitely made some kind of peace with them. I have realised that they are a part of me. The more I fight, the more my hallucinations have power over me. So I fight less and I look to live and cope with them more.
I have found a lot of comfort in sharing my story with others and supporting others going through the realisation and diagnosis of the condition. I had nobody there for me to tell me it was okay and what it was I had. Yes I had my family and friends but they were in the dark with CBS as much as I was. They were the ones who gave me the strength to ask the questions and for this I will be forever grateful.
This has led me to finding Judith Potts of Esme’s Umbrella a powerful and compassionate woman on a mission to spread awareness of the condition after her mother Esme suffering in silence for a long time. When she told me the story of the doctor from America and her mother, I was horrified. Her mother passed away in hospital on a dementia ward after having hallucinations of maggots and worms in her food and drink and because of this she refused to eat resulting in her passing.
Now this is an extreme case of the condition and there was definitely not as much awareness as there is now. The misdiagnosis of Charles Bonnet Syndrome led to this., This was shocking to me and I thought just like Judith, I couldn’t sit by and let this happen to anyone else.
This is where I decided as much as I can I wanted to help support those going through the loneliness, anxiety and frustration of this condition. I also wanted to shout from the roof tops in order for everyone to hear! I started to share my story. I was honoured when Judith asked me to be an ambassador for Esme’s Umbrella and I started on my mission to help her in her mission.
I have helped with the actor Richard Horley (Jonny Conor) of Coronation Street research the condition and how it affects us and how we cope. I have been interviewed for many amazing podcasts such as ‘That blind lads’ podcast, ‘Inside my wardrobe’, and the ‘Sight and sounds’ podcast and many more. I have also been a part of a webinar by the Tomas Pocklington Trust. I hope someone somewhere out there hears my story and the information and it helps them. If I can only help one person then I am doing well.
I have started am Esme’s friends group running on the last Wednesday of the month 11am-12pm so if you want to join or know anyone who does please email me at email@example.com. There are also other Esme’s friends group throughout the UK. So if you would rather one more local (not Manchester) then you can find the list on www.charlesbonnetsyndrome.uk We are all here to support each other!
I am also setting up a few projects one is a sponsored walk in August this year fingers crossed. This is to raise much needed funds for research and support for those with the condition. I will keep you posted on this! I am also looking into starting a visual project creating visual representations of the condition. This will involve people with the condition paring with an artist to develop a piece of art work. This will hopefully give the sighted a glimpse of what it is we experience. I hope to have an exhibition of this at the Manchester Royal Eye Hospital and the Moorfields Eye Hospital.
There is also my idea of a research project into alternative and holistic therapy and the effects on Charles Bonnet Syndrome. This would involve volunteers with the condition trying out some alternative therapies such as meditation, diet or massage to see if it has any impact on the frequency and longevity of the hallucinations. Meditation has been an amazing practice for me since losing my sight and developing the condition. I have definitely notice it reduces the severity of what I see. I think there is a definite connection with what you may see and your emotional state so anything that can relax you and calm the nervous system should surely be effective. I am but one person though and we need more evidence.
So, my CBS journey is really starting to take off with lots of exciting projects and potentially a lot more awareness for the condition to be made. All I know is that me doing this work is not only beneficial to me, but hopefully to others. I hope it means they don’t have to be scared and go through this process alone like I had too.
Thank you for reading and if you want to know more or want to help in some way please get in touch with myself via email or Judith via her website which has all the contact details to hand
Take care, sending love