So, this isn’t a terribly easy blog to write, but one, I want to draw attention and awareness to.

Sight Loss and Depression

For quite some months now, my mood has been pretty low, because of my perception of what sight loss has done and means to my existence.   My mind hasn’t been in a good place, but I am sorting it out, slowly, but sorting it.

Im not ready to go into great detail about being depressed, now is not the right time – but, I will, when the time is right.  However, to put things into some kind of perspective, some of the symptoms I was/am experiencing are:

  • General low mood and malaise
  • Not particularly liking myself
  • A complete lack of motivation to do anything
  • No interest in anything or excitement about anything

However, the main reason for this blog post will become clear ……

Am I loosing my mind?

I seriously thought that I was loosing my mind.  Not just because of the above, but more because, as well as the low mood, and no desire for anything, I began to “see things”.  As I am writing, I am smiling, as it makes me think of the movie The Sixth Sense – where the little boy whispers “I see dead people”!

Initially, it was quite amusing, and I didn’t pay it any thought, I would suddenly think there was a wall, or I was going to walk into something, so, I would duck, or swerve or stop dead in my tracks.  I have done it on occasion with my partner in the supermarket.  I would laugh it off.

As the months went by, these images began to happen more and more, each time becoming more  vidvid and hallucinogenic.  I would see “walls” appear out of nowhere – brick walls, with vivid colours ( bearing in men my sight loss has taken away the ability to distinguish colours), often the walls would have spiral patterns on them, and more often than not have water running down them.  This would happen randomly and sporadically, in all sorts of places, in the car, on the bus, when walking etc.

As if walls were not bad enough, more so in the evening, I began to see a man, with a scruffy beard and short ginger hair, quite well built, not fat, more defined.  He would have a hoodie on and just be standing there, close to me, with his blue eyes staring menacingly at me.  Occasionally this person would appear whilst I was in the shower, or sat in the living room watching TV, and very often at night whilst I was trying to sleep, I would open my eyes, and this mans face would be intently staring at me. I was actually pretty petrified.  My partner works a lot of hours and mainly through the night – so, this was particularly bad for me in the evening.  I would stay up until after my partner went to work at 01:00 or 02:00 in the morning – I would then go to bed, fearing to close my eyes.  Many times during the night I would be woken to this person staring at me, stood at the bottom of my bed, stood right beside me or at the doorway.  I could see his face so vividly.  I would then shout out to “Siri” on my iPhone to turn on the bedroom light, the living room light, the hallway and landing lights – in a panic, and in a sweat, with my heart feeling as if it was about to burst through my chest.  I would then lay there, wondering where he had gone to – walk the rooms, re-check the doors, check the windows, go back to bed, turn off the lights – or maybe keep the landing light on.  This may happen once in an evening, or not at all, and then other times, it would happen six or seven times. Often I would stay in the living room until 2,3 or 4 in the morning, then up to bed, knowing I only had three hours before I needed to get ups and let the dogs out.

Things got to a point where I just wasn’t sleeping at all.  I bought a new alarm system and set it up with my partner, testing every sensor and every contact.  Having it operable from my iPhone , that way, I didn’t need to try find the numbers on the alarm pad.  There was also a panic alarm function that I could easily get “Siri” to activate or tap my phone screen if needs be.  The nights were like a constant nightmare.

I would also, suddenly see things scurrying across the floor, or on the walls – I could never work out if they were rats, huge spiders or something else.

What next?

I felt a wreck, a total nut job, and could tell anyone.  How could I, I was seriously afraid that things would be taken out of my hands, and that I would be forced into treatment, sent away to “get better”.  My partner occasionally would smile/laugh ( as would I ) when I thought we were going to walk into a wall, or hit something in the car, or if I saw a figure on the landing – but, inside, I wasn’t laughing, I was absolutely terrified of what was happening to me.

All of the hallucinations, made me feel like my sight loss was so much worse, because it was now affecting my mental health, it wasn’t just a physical restraint anymore, it was also robbing me of my mind.

Again, I smile as I type this – BUT, it isn’t funny – I seriously thought that the next thing to come, would be that I would start to hear “voices in my head”. This would signify the beginning of the end to me, it was putting me into a dark place, where I felt there was no escape , well, there was, but it was a final action.

Sane moments:

In my “sane” moments, which weren’t very often, but when I managed to get my mind into a safe place, I would think to myself:  Loom at the facts:

  • I lost the majority of my sight – I dont see sharp, vivid pictures of people or any other objects, I look through a thick fog, and in many places the fog is a solid black shape, where there is NO seeing anything, and I certainly cannot differentiate between colours, I see things in greyscale if anything.
  • So, how can I then. see the brick walls, the spiral patterns on them, the clear face of this man, making out his eyes, his beard, his hoodie etc.  I dint see colour anymore at all – yet I can see his blue eyes!
  • There is NO sound coming from. the water running down the walls, there is nit musty smell.
  • I cant hear this mans breathing when he is so close to me, there are no smells to him, and no noise
  • The spiders or Rats or whatever they are scurrying across the floor or the walls are doing so in silence, there is not a slight sound of them scurrying noise

Despite this reasoning, the things were still very real.  It would halt me in my tracks, and panic me.I couldn’t possibly tell people though, what the heck would they think? Im insane

Have you lost your mind then?

I truly thought I had – however, Last week, I went to see my Highly Specialist Orthoptist & Low Vision Team Leader, for a routine follow up appointment at the low visual aid clinic.  This lady has been amazingly helpful since sight loss, and given me so much support, information and made necessary referrals, getting me a rehab officer at the beginning, when the council seemed to have lost the referral from my Ophthalmologist, ad I fell out of the system.  She has seen me on both awful days, in the early days, when all I did was weep and want to hide away, to great days where I exhuberated confidence and determination.

Deborah, said something to me, and it just hit a chord with me, and I took a deep breath, put my head into my hands and all of these visual things came pouring out, between sobs.  She took my hand in hers, and said that she was so so sorry that she or no one else ever mentioned the possibility of this phenomenon, and that I have been suffering these thoughts in silence.  She explained to me that Charles Bonnet Syndrome is exactly what I was describing to her, and it wasn’t that I was going insane, loosing my mind – it was something that can happen , and it is reported to happen to around 40% of people experiencing sudden and sever sight loss.  She said that it most likely affects so many more of people with visual impairment,s but people dont report or mention it, because of the shame and fright they feel about it.

In that instant, I sobbed my heart out, and sighed a huge sigh of relief, months and months of this feeling I was going crazy, wasn’t that at all, it was Charles Bonnet Syndrome.

WHAT IS CHARLES BONNET SYNDROME (CBS)?

Charles Bonnet Syndrome (CBS) is a term used to describe the condition in which psychologically normal people with a severe visual impairment experience visual hallucinations.

Here is a little information about it:

Charles_Bonnet_Syndrome

I am learning to look away when I see these things briefly, I blink, then blink again, divert my gaze any kind of distraction too make them disappear.  Sometimes it works, and sometimes only very briefly before they are back – BUT, I know they are just hallucinations, not real, and out of character for where I am seeing them etc – so, in time, I will learn to control it, and hopefully, see it as something maybe even a little light hearted , and certainly not as a measure of my state of mind, and my destined insanity!

So, if you know anyone with a visual impairment, and feel the time is right, or its appropriate to do so, bring Charles Bonnet Syndrome up in casual conversation – as you may just be saving someones world from falling apart.

Thank you for reading, and I hope that in some small way, if you are reading this albeit via a screen reader, and have a visual impairment, and are in the same situation as I was – hopefully, seeing this will help set your mind at rest and ease your anxiety, reassuring you that its a perfectly normal reaction to sight loss in many cases.  You could then approach your GP with this knowledge and feel in control of the conversation.

3 Replies to “Sight Loss – Loosing my Mind – Charles Bonnet Syndrome”

  1. How terrifying for you to experience such horror and especially at night when you have been alone .
    Thankyou for writing this blog as it will certainly help so many people going through the same thing .
    As always you are an inspiration to us all but I would add to your blog please talk to someone , anyone rather than let it drive you into a bad place ! There is absolutely no shame whatsoever in telling a friend or anyone , in confidence ,what you are going through .
    As always I am so proud of you sharing the ups and downs of this journey xx

  2. Thank you Terry,
    That was an emotional read. I’m so sorry that you have had to go through this frightening situation. This demonstrates two things to me. One you never know what is going on behind the venir of someone’s life. Two we all need to be more open and talk about our fears, good times and bad and not pretend to friends and family that everything is just fine.
    Phone someone for a chat, message them, me included if you just need reassurance, kind words or to feel someone is there. You are inspirational. If we share your blog and it helps one person that will be wonderful.
    I hope that today with the guide dog goes exceptionally well. Xx

  3. Terry how awful for you hope now you are feeling better in yourself my heart goes out to you my friend in tears reading your story
    Thoughts are with you always x love Sandra xx

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