Our CVI Family at the Seaside!

CVI stands for Cerebral Visual Impairment and it is the closest diagnosis we can find to the experience of ambient colour sensitivity that my son and I have.

To avoid brightness, UV and business, we decided to leave for the seaside at 8:00 am and as the sea is quite close to us, by 8:45 we found ourselves walking down the seafront of the popular Dorset town of Lyme Regis.

Previously I had carefully packed 3 rucksacks with cameras, binoculars, snacks and drinks and chosen the right colour coat for myself to wear on that day. Also I had to choose some combination of hat and brim to keep out the brightness and UV. My son was in his usual grey, and I was in my usual white bamboo trousers plus pink coat and the hat of the day which happened to be purple. My husband was in his usual blue shorts and white t-shirt. He would wear colour and pattern if we could only manage it.

We have 3 seats in the front of our car (an old Honda FRV) and my son sat with his phone and headphones listening to his techno music to block out the sound of the engine and the wheels on the road. I sat trying on tinted glasses to find the optimum pair for that day and my husband concentrated on driving!

When we reached Lyme Regis we went to our usual carpark and parked under our shady tree. We got out of the car and my son asked for his No.3 tints and I put a sunhat on his head. He went straight to find his camera (a big old DSLR one.) He put the strap over his head and straight away was taking a picture of two seagulls on a roof near to where we had parked. It was the sort of picture most people would miss, not thinking it was exciting enough. But not Luca. He finds the pictures others don’t see.

We paid for the carpark and then walked down the steep hill into Lyme town. I was commenting on how pleased I was with my new pink ski jacket. Yes, it was about 17 degrees and I was wearing a ski jacket! Temperature is not something I process easily. We walked down to the front and on a big wall from where we could see the whole beach laid out before us, I started to unpack my glasses! I had some prescription glasses, some purple glasses with prescription, and three different sets of polarising glasses. I was desperately looking for polarising glasses with the correct tint because I had realised that I couldn’t look at the colour or the movement of the sea. My son was becoming impatient wanting to move on but I knew I had to either find the right glasses or filter out the sea somehow. Having come to the seaside, that thought was depressing so I dug deeper into my bag. And I found a pair of pinkish purple polarising glasses. I put them on and Ahhhh, I could breathe! Everything just went calm and I looked at the sea and it had transformed from ugly and angry to beautiful and tranquil . Now I stood a chance of enjoying the rest of our trip.

Next I knew I mustn’t lose control of things when it comes to Luca. He has limited energy when we are out and if we walk too far, he might not have the energy to get home. We walked along the seafront and there were more seagull pictures to take. And Luca has a particularly clever way of tracking them and and keeping them in focus as they move across the sky. Everyone was happy . .

My husband has a way of being drawn towards the Cob that juts out into the sea, like a bee to a honey pot. But this always means a longer walk and always means going through the business and clutter to get there. Suddenly there is sand and cafes and lots of people, meaning lots of clutter, noise and smells. And yes, once again we found ourselves drawn towards the Cob. And once more I wasn’t happy! I started walking faster which is always code for ‘I want to get out of here quickly!’ so we found a quiet side street and I immediately felt that I could breathe again. And there on a wall nestled between the rooves was a seagull’s nest with a parent looking after their young, so my son was happy now too!

So what was next? Hunger, of course. I suddenly realised I needed a snack so we headed down to the pebbles as my son doesn’t like the sand and, as I said, the beach was too busy. We spread out our picnic blanket and I got out my sandwich. My husband got out his little pack of Nairn’s chocolate oat biscuits. Then my son said “You can’t eat those!” He doesn’t like the smell of chocolate or strawberry jam. I looked around and you could see beach for a good quarter of a mile in both directions! “Can’t Luca move from the smell?” I wondered. I broached the subject but he said he was tired and he had nothing to sit on. And also that he wouldn’t eat his sandwich on the beach because last time he was harassed by a seagull! So our snack became a quick bite and then we needed to find shade away from the beach. By now moods were lowering and I was feeling disappointed. Why hadn’t I thought to bring 2 picnic blankets?

By the time we had walked to the top of the park that backs onto the beach and found some shade, the day was getting hot and the UV levels were getting higher. I was starting to feel the affects of the light spectrum in my nervous system, especially my hands and arms. Now I just wanted to get home. We had been out too long. We had walked a little too far. We had got a little too hot and there was a little too much visual clutter. We quickly found our escape route from Lyme – a pretty alley-way between cottages that leads nearly back to the carpark. On the way, I managed to share my disappointment and receive some solace from my trusty team. At the end of the alley-way, there was just one more hill to climb – the steep one we had so happily come down on our way into the town. This was one too many hills for my son.

Having made it back to the carpark, the car was nice and cool. It was 10:3o am. Lots of people were arriving for their day at the beach and we were glad to be going home from our hour at the beach! We started the drive home. My son said “That was good. It was a bit difficult but I think it was worth it!” That was all I needed to hear! I breathed a sigh of relief.

Living with CVI is one challenge after another. And just when you think you have completed all the trouble shooting you need to do, something changes. It could be the season, weather, or time of day all affecting how you perceive the colours, line, shape, edges and movement around you. In fact you have no constants. When you have ambient colour sensitivity, your only constant is change.

To read more about living with ambient colour sensitivity – a type of CVI – please take a look at my book.

I Prescribe my Own Glasses!

Having spectral sensitivity, I constantly feel that my vision is compromised. I have tried working with coloured tints but find that a pair of tints only works for a short time. When the light changes, they no longer work. This year I had not tints that worked from July to September so I decided to return to considering my prescription glasses.

Over the years I have been to the optician’s and have received a number of different prescriptions. I decided to scrutinise these. One said I have astigmatism in my left eye, another in my right, another in both eyes. Opticians have disagreed over the severity of my astigmatism and then one optician identified a squint. I looked at my prescriptions and wondered what I should do.

I had noticed previously that when when I wore glasses, the shape the frames made always felt like a rectangle going smaller over my right eye. I wondered why this was but guessed it was just the best I could do with glasses. However now since reconsidering, I feel pretty sure this happens when my squint comes into operation. Next I thought about my astigmatism. I like working with charts on my computer which are always in grids, and it is obvious when my astigmatism is a problem. I can no longer manage the grids.

My astigmatism and squint symptoms are definitely seasonal. They change with the changing light. So I decided to observe my symptoms as the year progresses, create my own prescriptions and buy cheap experimental glasses online.

So far I bought some glasses for my astigmatism in September (0.25 strength in both eyes) and they worked! Then they stopped working at the end of September and I had no glasses again. I happened to have another pair with a 0.25 in one lens so I played around with 0.5 strength by covering my eye with 2 lenses at the same time. I could see this was good so I bought a pair of 0.5’s. They are working into October in the mornings. Once the light gets brighter around lunch time, I need something else. I dared to buy some low strength astigmatism glasses with a prism (as prescribed by one of my opticians). These work great when the light is bright. In fact, I am wearing them now and my binocular vision is so good that I am able to write a blog post in October. Previously I haven’t been able to do this.

As the year develops, I will continue to observe my vision and prescribe myself any other glasses I think I need.

When my vision is compromised, I struggle with focus, tracking and scanning between distances. I have very good visual acuity and these symptoms are all very subtle. However, due to my sensitivity, these symptoms are enough to stop me in my tracks! I struggle to focus on daily activities, I struggle to read comfortably and to plan ahead, and I struggle to think outside of the box, analyse, assess and see things from another’s perspective. I feel like I am stuck, living only in one dimension and unable to move.

The Wonder of My UV Blocking Clothes!

Every year right in the middle of the year, my light sensitivity symptoms become more severe than usual. I start to feel that I am constantly overheating especially if I go outside on a sunny day. And even if I stay inside, I feel that something too powerful for me is coming in through the window. I avoid standing less than a couple of metres from a window if I can do this, or I shut the curtains. It is not just the heat feelings. I also feel agitated, nervous and have digestive issues.

This year I started to look into the idea of UV blocking things. I started with a UV blocking umbrella which I used in the garden on a sunny day. I noticed I felt more calm and no heat problem as I would usually get. I didn’t suddenly need to run inside. I lingered and felt that I could think straight and actually have a conversation. Pleased with my findings, the next thing I bought was a UV blocking beach tent. It hasn’t had much use yet but I know it has potential. Needing a larger space, I then bought a UV blocking gazebo (as in the picture). We had a simple white gazebo before but somehow the idea of it was always a lot more pleasant than actually using it! I would immediately feel my symptoms worsen as I stepped into it but I didn’t know why. With our new gazebo, the temperature is about 5 degrees lower than in our last one and the light, heat and UV is reflected. I have been drawn to sit in this gazebo on some sunny days and found the experience very pleasant.

So now I had my experience outside all sorted out, I needed to work on my experience inside. I would walk into to a room in the middle of summer and not really know what to do with myself – the symptoms were so unpleasant. So we bought some UV blocking window tint and had moderate success and stress trying to apply it to a couple of windows! It made an immediate difference and makes what I see through the window appear softer without losing any of its life. The tint I chose is very light – the sort they use in museums to stop paintings and other artefacts from fading. We plan to tint the windows throughout our whole house now.

So this brings me to . . .the wonder of UV blocking clothing! First of all I read about it, and the articles I found suggested it was a bit of a gimmick. They said that all you need to wear to block UV is fabric with a fine weave, and dark is best. Well, I had nothing to lose by trying some so I bought myself a white UV blocking top. It was a high UV day when I tried it on. I was struggling to use my computer one afternoon and I have a pop up office downstairs where I sit about 2 metes away from a window. I put on my new top and instantly felt better. I felt less hot and more calm. I usually wash things before I wear them when they are new but once it was on, I wouldn’t take it off! I didn’t take it off until bed time and then it was straight on again in the morning!

Next I bought myself UV blocking trousers. Now I wasn’t sure about wearing white trousers but being colour sensitive I can’t wear black or grey, and colours were limited. When they arrived I gave them a disdainful glance and left them in the box for a week or so! Then one day I was sitting at my computer with my usual mild stabby pains in my gut and thought, “maybe I do need to wear UV blocking trousers. Maybe I could eliminate a few more symptoms.” So I put them on and they were wonderfully comfortable and as with the top, I immediately felt my symptoms improve, and wouldn’t take them off! I felt more grounded and present in my legs and my gut felt more calm.

Now I wear UV blocking clothes most of the time. My theory is that because I experience the spectrum as imbalanced, UV is affecting me more than others. It is particularly problematic on days when I don’t perceive enough red light. And I don’t think it will just be in the summer because I have always had unpleasant symptoms all year round.

And this is the wonder of my UV blocking clothes!

It’s Harder for Some of Us to See Out and for Others to See In.

I have wondered my whole life why my face appears so unrelaxed when I catch sight of myself in a mirror. And it is more than this – it is as if I am struggling to connect through my eyes. There is just the odd occasion when I look in the mirror and think ‘Oh, there you are, so you do exist after all!’

Now I know that it all has to do with my difficulty in always perceiving enough blue light. I am not talking about violet or green or any other colour – no, specifically blue. I always have this feeling at this time of year from half way through February to the beginning of April. I discern enough violet light (I know that because my brain is so active, intuitive and creative,) but I am struggling to perceive blue light. I know this because I can feel quite alone and struggle to be a team player.

As I see my own and other people’s energy, I am able to find clues to connection and disconnection, that others may not have. When I perceive too little blue light, I literally see a band of low energy going across my eyes. I find myself trying to connect with people through eye contact but not really feeling the connection I want. I feel open-hearted, but it is amazing how cut off you can feel when you struggle to connect through your eyes.

I have to learn other ways to connect – voice, feelings, touch, smell, taste, movement – whilst I am waiting for the blue light to come back!

Anxiety – Does it all Really Come from Within?

If you had asked me the question – “Does all anxiety come from within?” a few years ago I would have said “Yes” without hesitation. And as a result of thinking this, I have had a lot of therapy and worked long and hard with my self development, expecting to resolve my insecure anxious feelings and thoughts.

A Story

Today I woke up feeling bright and breezy and decided it would be a good day to go with my family to a small seaside town and play mini-golf. Now, for our complicated family, it is amazing to just get out of the door, let alone make it down to the beach and participate in an activity! But I felt the light was good, my energy felt good and it was worth giving it a try.

As soon as I decided to go out, I felt my anxiety levels raise. I started thinking about all the things we needed – rucksacks, juice, chocolate, tissues, paracetemol . . .! I then told myself that this was just like any trip for us. We would take the same things for an appointment at the hairdressers! So I relaxed a bit. But I noticed I still didn’t feel as grounded as I had felt when I first got up. My legs were a bit achy and physical tasks like carrying things around the house were starting to feel difficult. I then realised the light had changed – I was perceiving less red light than when I first woke up. I wondered if I still really felt like going out. But of course, with a 12 year old who is excited about the prospect of mini-golf by the seaside, you don’t really get a choice. With the suggestion comes a commitment!

So . . I committed and off we went! When we arrived, I felt the same as I had done at home – happy, pleased to be alive but ungrounded. How does this feel? Well . . it feels like my legs aren’t as substantial as the rest of me. This feeling used to make me feel insecure but it doesn’t any more because I recognise it and understand it. At the seaside today, I knew I was safe and all was well and it was this knowing that I depended on. The real give away with how my perception of the light affected me, was just how much my legs ached when I had to climb lots of steps to get to the golf course. I felt as if I had run a marathon in the last 3 days, it was so painful. Also, when the energy is low in my legs, I have a tendency to pull muscles in my knees so I have to be super careful how I I use my legs and the rest of my body.

At the mini-golf I felt just OK. When you don’t feel grounded, it is harder to feel more than OK sometimes. it takes a distraction like seeing an amazing gull or getting a hole in one to feel more than OK. This feeling of just being OK can raise the alarm that something isn’t right but I am used to the feeling now and just stay calm and go with it. As I say, I know I am safe and that all is well.

My son, who is 12, has a similar experience to me. As he is a child and not always thinking rationally, small things can knock him off balance emotionally, and have massive impact on him physically. After the game of golf, we decided to go to the fish shop which was at the bottom of a very steep hill. I could see the pain on my son’s face as he walked down the hill, and the fear in his eyes that he might not make it back to the car. I remember this feeling so well from when I was a child. I would sometimes feel that I could not walk another step. But there is nothing wrong with our legs. Having rested a little on the drive home, my son got out the car and ran to check on his pet doves. I just got on with life as normal.

Not being grounded and having low energy in our legs does affect our daily life but it affects us much more when we try to go out and have some fun!

Anxiety definitely doesn’t always come from within. Sometimes we don’t know what is affecting us. We just know we don’t feel right.

Heal Your Gut – Match Colour and Texture with the Light!

As I said in a previous post I have tried many diets from the free from food! to the anti-candida and fodmap and none of them have really worked.

I have had to really scratch my head when it comes to eating. Some days I feel I can easily eat my oat biscuits and drink my berry juice and other days my body seems to go into some sort of resistance and not want these things. Some days I have even had unpleasant symptoms just drinking a small glass of highland spring water. And on days when I have eaten what I felt would be the best for me I have often felt my worst.

Then I discovered my reaction to colour and texture and over time I have been piecing together how my changing tastes correlate with the changing light. This has been revolutionary.

My Diet Today

I started my day as usual with Green and Black’s dark chocolate! It is the only thing I feel I can digest first thing in the morning and seems to calm my gut so that I am ready to eat more foods a little later. Now I had a choice of the 70% standard or 70% velvet edition! Yes, G & B have bought out a smoother chocolate. This choice was a very important one because the standard is crunchy and feels more acidic and the velvet one is smoother and feels less acidic. I looked out of the window, saw the light was ‘blue’ and chose the smooth one. Ahh – good choice

An hour later I was hungry again and by now the light was getting brighter. My need for ‘crunch’ has started so I turned to my Nairns oat biscuits. They have just the right crunch and just the right amount and I can add a little fat with some butter and a little sweetness with a tiny amount of strawberry jam.. I was satisfied once again until I realised I was thirsty! And I had another choice to make – a red berry juice with more strawberries in or a darker purple berry juice with more blackcurrants? The red juice wasn’t calling to me today and the colour of the darker juice seemed to resonate with me more so I chose the darker juice. Ah – it has a smoother more velvety taste that the red one – again, right choice.

A little later in the morning I was hungry again! Now sometimes late morning I have a real taste for some sourdough bread. This really fills me up until lunch time. However today I felt resistant to it and even though I tried to eat it, I decided it wasn’t right for me so stopped. I looked out of the window and saw that the light hadn’t really balanced as it sometimes does by this time of day. It still appeared ‘more blue’. So I decided to have more ginger oatcakes. Although that would be raising my sugar levels I knew instinctively that I would digest them fine and I did.

So, next stop lunch. In June my lunches are a bit limited and this is mostly due to my reaction to colour and texture. I see blue in green which means I avoid green vegetables except courgettes because they are two-toned! I see green in brown meat so I only eat chicken, pork and fish. I can’t do ‘crisp’ even though I can do ‘crunchy’ so don’t choose chips. I can’t do ‘super soft’ even though I can do ‘smooth’ so I don’t choose fish. Today’s meal was pork marinaded in herbs, griddled courgette and red pepper and new potatoes. Yum – all nice and easy to digest.

Then in the afternoon I revisited ‘crunchy’ with a couple more oat biscuits and revisited ‘smooth’ with a bit more chocolate before I arrived at tea-time. By this time of day the blue and violet light is dropping away and usually I perceive more red light. This means I am happier eating softer food so my tea was home-made sourdough bread, butter, strawberry spread and sheep’s cheese. I completed this a with little more juice and a tablespoon of kefir. And well . . . a few more squares of standard, less smooth chocolate in the evening!

So . . . I eat according to the light and how this makes me feel about colour and texture. And it works.

We need to eat the food that matches us and resonates with us. Why don’t you talk to your gut and give it a go!

Heal Your Gut – Understand Your Deeper Needs!

So . . I have tried many diets to heal my gut. I have tried the ‘free from most things’ diet, the anti-candida diet and most recently the FODMAP diet.

I thought the FODMAP diet might really be my solution as I definitely have an issue with fermentation but when on a day when I had all ‘safe’ food and still didn’t feel well, I lost faith.

This has always been the same with diets for my gut. There always seems to be something else underlying my gut problems – not always just to related to the food I eat.

I have some theories:

Candida (yeast infection)

This always seems to coincide with my having an issue about some need not being met. Maybe I am not giving myself something I need or not allowing something in from other people. It feels like I am under attack from my feelings and unresolved needs. It happens in the Spring when I perceive more violet light and I have a lot of intuitive energy but I don’t feel so open hearted because I am not perceiving enough red and blue light.

Gut Fermentation.

This feels very similar to Candida except it happens straight after I eat. It seems to coincide with my feeling that I have more energy than I can express. It feels as if there is too much energy in my gut and it is trying to burn itself up. It happens in the summer when the blue light is prevalent and I have a lot of single-minded energy but don’t feel so secure due to my not perceiving enough red light.

Have you ever wondered if there might be something else going on underneath your gut problem?

Autism Mis-diagnosed – Could it be Colour Sensitivity?

snow owl

My son is 11 and has a lot of sensory processing issues, his most challenging ones being visual and sound.  When we go to see doctors, paediatricians and occupational therapists no-one knows how to help us. They don’t seem to have seen this type of sensitivity before (especially the visual processing) and they don’t seem to have seen sensitivity outside of autism.

So . . . where do they refer us? Autism testing.

I told my son about the assessment and he was quite indignant that he didn’t want to be mis-diagnosed as having autism and so he he wrote a letter to the doctor.

Dear Dr,

I am Luca and I am 11. I have an appointment to come and see you and Mum and Dad say it is about behaviour and autism.

I don’t think it will help me to come to be assessed because I think lots of people are being mis-diagnosed with autism when really they are colour sensitive.

I am sensitive to colour and pattern. I see colour and pattern different to other people. And it makes my brain do funny things. I can’t think very straight when I am in a room of a particular colour. And when people show me things on paper or on the screen I might not be able to process them. Or when people ask me questions I might not feel well enough or have enough energy to answer them. I don’t even like looking at people’s faces much or do eye contact because of the colour and patterns on people’s faces.

When I am in a room of the right colour which is really a type of white, I can concentrate much better but I might still struggle if the light outside doesn’t feel right for me or if it is sunny or if there is a blue sky.

When I go for appointments to see doctors I feel like I can’t really be me. My Mum has to speak for me and I feel trapped by the colours in the room and on people’s clothes. I can’t really show people who I am.

I don’t really mind being assessed for behaviour things or autism but I am not happy to be assessed in a place that is not right for me and then get mis-diagnosed. I feel at my best in December when the light is dim, after dark and in my house which is all neutral colours and patterns.

My Mum helped me write this letter because of my processing problem.

I hope you understand and take me seriously,

Luca