Hi there,
So I have been pondering the above question for a while and still haven’t really made my mind up. Perhaps I should explain why I have chose to write about this in todays blog.
When I lost my sight in August 18, I developed a condition called Charles Bonney Syndrome. This is a condition that effects the visual parts of the brain causing you to see things that are not there. The hallucinations are purely visual and they do not communicate with you. I just had to make that clear incase anyone thought I was going a little mad! Well that’s what I thought people would think of me as CBS is not a well publicised condition. People can jump too so many conclusions when they are not informed of something correctly. You just have to look at what is going on with the corona virus at the minute. I have wrote a few blogs on Charles Bonney Syndrome but just wanted to give those who are new to the blog a re cap.
In developing the condition it has not eased over the now nearly two years, if anything it has got worse! I have attended a couple of patient support days run by Esme’s Umbrella, a social enterprise set up to help those with CBS and to raise funds for much needed research. I have spoke at one of these days to to share my experience of CBS whilst being a mum, in the hope it will help others. I am currently helping Judith to set up a day in Manchester which will be the first but that’s another blog post. I am getting a little distracted from my point, since developing CBS I have been trying to find a way to get rid of the hallucinations or at least mute them. I have tried many things medications, which I did not have a good experience on and they didn’t improve the images at all if anything they got worse. That was that out of the running,, until they come up with a new tablet so what else can I turn to?
I started a Level 3 complimentary therapy course in October at The White Rose School of Health and Beauty and in doing so I have been open more to the world of holistic and alternative therapies. I have been doing meditation since the retreat I attended in February 19 and this helps for sure but is not a definite fix., a life style choice. My favourite guided meditation is on YouTube and is by Micheal Sealy or The honest guys. In doing the course I have been learning reflexology, aromatherapy and Swedish body massage. When I am performing a treatment on a client (or model at the moment) I have found that I connect with the moment and the client and the images and anxiety of the hallucinations dissipate. I am in the moment and it is like I can see what I am doing and see the part of the body I am working on in that moment. I recently had a conversation with a neurologist who is producing something on the senses (more info released later). His thoughts are that when you loose one sense the brain re programmes itself to use another in order to achieve what it needs. This made sense to me in what I was experiencing. On a more spiritual side I believe I have or am becoming more in tune with my inner self and my senses that this allows me to pick up on more around me. This I believe is possible through alternative therapy not medication.
Whilst doing the course I have really got into Aroma blends and the power of essential oils. The products we use on our body truly do impact our health and wellbeing. There are certain blends that I have found help with the hallucinations. This is something I would like to do some research into, even just on myself or a few participants. Exercise and yoga have been another great way of helping with my hallucinations. Yoga enables you to connect with your centre and focus your mind which in turn I have found that I escape the images. They are still there but I notice them less. I do however struggle in getting to classes and therefore don’t practise as much as I would like as it really does help. I have a running machine in the house which I use but nothing can beat being out in nature. I struggle with these things getting out as I need support in doing so and I can’t get this through charities and social services. That is defiantly another rant!
In summary in my experience so far and I am just at the start of this journey. I have defiantly found that alternative approaches to dealing with CBS is more effective for me than medication and there are less side effects. This surely has to be a plus! I will keep you updated on my progress and anything new I may come across as all of these therapies are so diverse and can help with so much more then just my condition. I would love to look at my diet and see if this could impact the CBS in some way. I am not the best at food knowledge. If anyone knows of a nutritionist who is studying and would like a case study I am happy to be a test study.
Hope you have enjoyed my insights and please remember these are all my own experiences and what works for one person, may not work for another. Please don’t let that put you off though give it a try you never know!
Take a look at my Charles Bonnet Syndrome blog Click Here
Stay well, sending love
Nina xx
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