Nystagmus Awareness Day 2022

Hello all,

Happy Nystagmus Awareness Day!

What is Nystagmus?
“Nystagmus is a complex eye condition, characterised by involuntary eye movements, from side to side, up and down or round and round. This affects the ability to focus, see the world in three dimensions and recognise faces.” Nystagmus Network.

How does it affect me?

For people with Nystagmus they have something called a null point which is a point at which they can hold their heads to reduce the amount of wobbling their eye does. Nice and simple… not really. It doesn’t stop the eye from wobbling and for myself this causes other problems, linked with Scoliosis.

If I have to hold my head at a certain angle to be able to reduce the eye wobble and try focus on something my neck will start to hurt. Which then spreads into my shoulder and then my back. This null point is not in keeping with what my posture needs to reduce the constant pain of Scoliosis. Therefore I just have to make the most of a bad situation.

How I see.

One thing which I think people would be interested to know is, what does the world look like to me? 

See the difference? It is as though there is constant motion and nothing ever stands still. I describe it to people like this ‘Imagine you have a terrible headache and you are stood up on a roundabout which is spinning. Then add to that by having to move around on the roundabout and stay stood up.

Does your head hurt? I know mine does.

Another problem for those of us who have Nystagmus is that we struggle to recognise faces. For children this can be stressful because if they can’t locate their parent in a crowd, they become stressed or panic.
This problem of recognising faces does not go away or improve as you get older. When I am out meeting friends I cannot see them until they are a few feet in front of me. Even then I may not be able to tell it is them.

How can you help someone with Nystagmus?
You can send them written information in formats they find accessible, meaning large font, or in a preferred colour. You can let them know in advance what coloured jacket you are wearing when you meet up. Or say exactly where you will meet them.

If you have any questions about Nystagmus you can drop them below and I can answer from my own perspective. Please check out Nystagmus Network for more details.

They have a wealth of information and they are really beneficial.

Remember you can follow me on Twitter @PhilippaB.

Scoliosis and Community

As it is June I will be writing another post about… you guessed it… Scoliosis Awareness.

I have only ever met 3 people who have the condition. One of them is a friend of a friend. The other is a person I know through work. They are both really lovely and it is nice to be able to speak to people who have Scoliosis as it can be quite lonely at times.

It can be lonely because people don’t always understand when you say ‘my back hurts’. People may respond with ‘oh… mine too’ or ‘have you tried Pilates?’ Please don’t do this when someone who has Scoliosis or, any chronic condition tells you their back, or something else hurts.

My spine hurts because it is so curved my spine curves into my shoulder blade. It doesn’t go underneath but it goes rather close.

The other person I know who has Scoliosis is my Mum. Her spine is not as curved as mine, but it’s still curved.

As not a lot of people know about Scoliosis is can be quite lonely. This is why it is important to share our experiences. So we can raise awareness and allow people to feel less alone.

This is important because it helps reduce the negative impact on your Mental Health. If you know there are other people out there who have the same condition as you then you can talk to them. Talking about things like diagnoses, pain management or even just activities you enjoy which are low impact. I joked with the person at work about the gym and we were both just like ‘nope…. Physio exercises are enough thank you’. These little things really do help you to feel less alone. 

If you have stumbled across this blog and you have Scoliosis please follow me on Twitter and join the community of Scoliosis Warriors. 

Sunshine and Glare

Hello,

It is getting round to that time of the the year again when I need to remember to take a hat with me when I go out.

The sun is causing a lot more glare than what I’d like.

I do enjoy summer, the warmer weather is better for my back pain. But the brighter sunshine is not good for my vision.

Hats are the best way for me to be able to move safely when I’m out, they cut down the amount of glare I’m having to put up with.

Otherwise I have to close my ‘good eye’, which means I’m left with less than 3ft of vision to see where I am going. Yes I have my cain, but I’m in pain when I’m using the very little vision in just the one eye.

It feels like someone is jamming their fingers into my eyes. That’s how much it hurts.

By wearing a hat I don’t have to worry about the glare, meaning there is less chance of me pain from the sun.

Please remember that when you see a visually impaired person, or anyone who is using a mobility aid, give them room. Be patient and let them do what they need to. We appreciate not being rushed.

Kindness goes along way.

Have a great day,

Philippa B.

Things you should not do.

Featured

Hello all,

How are we all doing today?

Normally I do not go out alone as I struggle to get to new places independently. Getting to work I do alone as it is a familiar route.

When getting on and off trains it can be quite difficult for a few different reasons, one of which is when the platform and trains are busy.

It can be very helpful when someone asks me if I need help. My preferred way of people asking is if they say ‘hello’ rather than touching my arm to get my attention. This is just because I don’t like people in my personal space.

If I say yes to you your help then please let me take your arm and the guide me onto the train. Then help me to find a seat. Once we have found one I will say thank you and that I am happy for your help.

People will ask me if it is OK to ask a Disabled person if they need help. My response is always, please ask if you are unsure. The reason I say this is because it is always nice to be asked and if we do not need help we will politely say no.

Things I do not appreciate as a White Cane user are people assuming I have no site at all and using this to think it is ok to push past me.

This week in one train journey the following happened:

The train pulled up and I was about to get on when someone got on in front of me. Then another person decided to the same. The second person did so as my cane was helping me navigate the train step. My cane caught in between his feet and he could have fallen over or I could have misjudged the gap and hurt myself. This is all because people are arrogant and want to get on first.

The train is not leaving any quicker because you got on first.

Then getting off the train I stood waiting to go through the doors from the carriage into the exit. My cain was stuck out and I was ready to move through the door. Then someone stepped round the side of me and pushed through the door before me. These doors are quite narrow. My cain got stuck between their feet as they continued to walk off the train. Once again this could have ended up in injury to myself or them.

If an injury were to occur, it would not be my fault. I have a cain for a reason, if you chose to ignore it and you fall over it is not my fault at all. You may think that’s a bit harsh, but it is not. My eyes don’t work well, which is why I have the cain, your eyes work, so please use them.

Please be respectful of Disabled people, well everyone really. Personally I think if you were to ask if someone needs help it is OK to do so. As long as it is coming from a good place then it is all good.

Thank you for reading.

CVI

Hello again,

Thought I would drop in. I was wondering what to write about and then I decided. My horrendous eyesight.

So the other day I was helping to put stuff away after shopping and the front door had been left open while we bring stuff in from the car. I heard a noise which sounded like a bell. I turned around and looked towards the door. There was something there, I couldn’t make out what it was. So I was startled. The mystery thing then moved. My eyes refocussed and I realised it was a cat.

The cat was black and white and our carpet is a dark blue, almost black. This is what made the cat more difficult to see.

One of my eye conditions is Cerebral Visual Impairment. My brain and my eyes do not always communicate with one another. Which leads to instances like the above where I can be looking directly at something but my brain just can’t understand what it is at all.

This can be very dangerous when crossing roads.

When I realised it was a cat I saw it turn around and move back outside. I went to close the door. We do not have a cat so this is why it was startling because it was out of the ordinary and clearly my head had no idea was to do with the information.

The same thing happened again this morning. I was putting on a fleece and a small moth was on the sleeve, I did not realise and then it moved onto my hand. I flapped my hand and it wouldn’t move. So I flicked the moth off and it disappeared.

It is very difficult when you can’t see but when you have CVI its all confusing because you are looking but your brain is just not doing what it should be with the information it is receiving from your eyes. This is very exhausting.

Please follow the link to the CVI Society to learn more https://cvisociety.org.uk

I am off to enjoy a nice cup of tea and watch some TV. Enjoy the rest of your afternoon.

Thank you,
Philippa B.

Being Sociable when disabled

Status

Hello all, 

It’s been a while. I’ve been enjoying some time away from my blog and it’s been nice. 

One thing which I am very excited about is the summer coming. It is always nicer when the weather is warmer and we can spend more time outside. The other thing I like about the spring/summer is that the days are longer. This means I can try and go out a bit more than I would in the winter months. Being visually impaired means I don’t do well in the dark. Having scoliosis is also another factor which stops me doing stuff in winter. The reason being my back hurts more due to the cold. 

But spring and summer are on their way. 

The other day I got to meet up with my friend which was lovely. I have not seen them in a while. We went for cake and had a wander.  It was lovely to catch up. 

I struggle to get out at times as I get quite tired with work. This is frustrating as it leaves me with little energy. So I often feel as though I can’t see my friends as often as I would like. But this is one of the problems when you’re disabled. I am always grateful to my friends who are understanding of this.

This problem of not feeling able to socialise as much as I would like is something the disabled community is not new too. We all have problems with being able to get out for a variety of reasons. Either due to tiredness or lack of access for our needs. There are many reasons.

I hope the world can be more accommodating for the disabled community as we have so much to offer. We just need support.

Anyway that’s my post for today. I shall try be back again soon with more posts. Have a great day. 

New Long Cane

Hello all,

Last week there was no blog as I had caught Covid.

What I was going to write about, which will be topic of this weeks post is the first week with my new long cane from RNIB. No Jab Long Cane.

My new long cane held in my left hand, it has a red handle.

The cane is a little longer than normal but it is still safe to use. It is a graphite cane with red sheep skin handle, I know right…fancy. With it being graphite it is lighter than my aluminium one.

The opening line for the description by the RNIB is ‘This revolutionary shock-absorbing long cane is designed to eliminate the sharp jabs that can occur when cane tips get stuck, for example, in a drain, while you’re out and about.’

The shock absorbing element of the cain is the reason I bought it. Due to my curved spine I find that my pain levels are increased whenever the cane whacks against something.

DareDevil.

As soon as I opened it and saw it, I just thought DareDevil. I mean who wouldn’t? I messaged my friend straight away and sent her a picture. It’s so good.

But does it really work? 

Yes, yes it does. The Caine absorbs 80% of the shock created when you walk into something. It’s especially helpful when you are walking along uneven pavements and the cane catches causing me to have a lot of pain.

I had to swap the tip though as it came with a marshmallow tip, I prefer rollerball. The reason being is I feel it glides a lot more smoothly along the floor and works better with my back.

The cane cost £56.99 ex VAT. It was a worthwhile purchase and I would urge anyone who can to try it out if they suffer with any form of neck or back pain.

Let us know how you get with it.

Until next time, Philippa B.

Disability Hate Crime

Hello again,

I have been thinking about what to write for my blog and I made a decision based on three things:

An article I saw only in the Yorkshire Evening Post
An event on the train
An event going to get my lunch 

A few weeks ago there was an article in the Yorkshire Evening Post regarding Disability Hate Crime in West Yorkshire. The article talks about how West Yorkshire has the highest rate of Disability Hate Crime in the UK. This makes me quite sad and very angry. As a Disabled Person I should be able to go out and about without the fear of people hating me due to my Disability, or for any reason. No one should have to put up with that.

A few days ago I was getting off the train. The doorway was quite narrow as it was an old train. I went to get off and as I was doing so three people in succession stepped onto the train and bustled past me in the narrow entrance saying ‘sorry’. For those who don’t know I am a long cane user. This means I use a white cane with a rollerball tip to navigate spaces around me. If you image getting off a train with someone walking towards you with a white cane do you honestly think it’s safe to push past them in a narrow train door way? No it is not. You could trip over my cane and fall, I could misjudge the gap between the train and the platform edge meaning I or you fall and seriously injure yourself.

As I got off a lady offered her arm and asked if I was ok. I said yes thank you and thanked her again for waiting. 

The third thing I am basing this post on is an event from yesterday. I was out to get my lunch in town and as I was walking with my cane, something happened. A lady was walking in front of me and as I walked past she said quite openly ‘You don’t need that…faker….you’re putting it on’. Now I am still wearing a mask when out and about, so I was able to pull a face which showed displeasure at this. I also scoffed. Which she clearly didn’t hear.

You might think I should have said something, but I was on my own. You have to wonder if they are willing to act blatantly ableist like that in the middle of a busy high street on a weekend, how are they going to react when confronted?

After posting about these various events on Twitter I got kind words from people asking if I was OK and expressing their concerns.

A few weeks another event occurred walking home. I was again minding my own business when two people wandered past and called me a blind c****. This I was upset by as I was already tired form a long day. But again what can you do? You can’t react because you don’t know how they will react.

The whole point of this blog is to make you aware that these things are happening to Disabled People and it can be very upsetting. It makes it more difficult to want to go out and leave the house.

If you experience someone who is being heckled or having insults thrown their way it can be difficult to know how to react. Potentially ask the person if they are OK? Maybe this will make the person who is being abusive stop as their actions have been noticed. I am not entirely sure how to fix this issue.

It’s upsetting and I wish the world was a nicer place.

Anyway I am cold. I’m off. 

Back to it again

Hello again, 

Hope you’re all well. This week has been the first week in about four months I have had to leave the house for work. This involves me getting on the train. 

The first day back on the train was ok. The conductor helped me on the train and to find a seat. If someone offers to find me a seat I say yes. The reason is that I have learned it takes away the visual stress of having to do this myself. As the trains are busier than I expected this is something I will continue to do. 

When I go into the station I use on my way to work I found that the one way system has been changed. This now means there is no one way system on the platforms themselves. Only on the bridge routes linking the platforms together. This I can see making life a bit more difficult as things get busier. If they keep the one way system on the bridges it will really help. 

One ways systems are better for Visually Impaired and Blind people because we don’t have to worry about navigating people coming towards us. It really reduces the levels of visual stress. 

Once I am off of the main bridge and down towards the barriers things became a bit stressful. The reason being they are relaying the floor. So there are barriers which means my brain cannot easily find a quick route around them. It wasn’t too busy so I just took a bit of time and wandered slowly where everyone else was going. Once through the barriers I noticed the same thing. I stopped. 

The issue is not just the visual stress, but the unexpectedness of the train station having work done to it. Once I knew where I could walk I just focussed on the exit and made my way towards it. 

The next issue with all of this is that I am using my long cane. This means I am sweeping the floor to find out where things are. So when a surface changes it can impact how I am going to navigate my way through the station. After a few trips to work and home I am feeling a bit better about it. 

I just want the work to be quickly so I don’t have to deal with ongoing upgrades to this station. 

The work they are doing though is very good. It will definitely modernise the station which is something that has been needed for years. One of the biggest improvements is the new glass ceiling. It really lets in a lot of light. Which compared to how it previously was is so much better. The ceiling used to be old darkened wood. 

Please be mindful while you are out and about as a lot of people are feeling anxious. Disabled People find travel difficult at the best of times and we are having to navigate a new way of travelling. We want to be able to get out, get to work, see our friends. We just need you to be patient with us. Going back to normal is a scary thought for some of us. I am not looking forward to jam packed trains and people pushing and shoving me because they can’t wait. Lets just be nicer and be mindful of others as we ease out of this lock down. 

Be back soon, 

Philippa B. 

While you’re here please check out my fundraising page.

my guide cane is in the foreground, there are two blue seats the background facing me, with two 'Out Of Use' signs pace on the tops of the seat.

Where to sit?

World Book Day

Hello all, 

I’m back after my Covid Vaccine, but that’s to be written about in another blog. I am feeling very grateful though that I received the vaccine. 

Today is World Book Day and for as long I can remember I have loved books. I always enjoyed English at school and it was probably one of my favourite subjects. No wonder I opted for an English based Degree in Media Studies. 

Do you remember in primary school when you used to get a new book? There was one occasion I remember trying to pick a book and putting it back and choosing from another basket. The teacher told me I had to chose a book which went alongside my reading level. This irritated me. I told them what kind of books I was reading at home and didn’t understand why I had to chose from the book box with my reading level. Eventually we came to a decision. If I read the books and brought them back quickly then I could move up the levels quicker. I did this and got to read harder books and proved a point which we all knew I could do, but for the sake of the system I had to have it noted down. 

Looking at a  book shelf, there isa clock on the all above.

Reflecting on this and the fact that it is World Book Day I have been wondering how many books was I aware of when I was younger which featured Disabled people? What is that representation like now? 

Looking back I do not really remember that many books, especially from when I was younger which featured Disabled characters. Thinking about this I have just asked my Mum if there was a character in the Biff and Chip books who was a wheelchair user. She says there was. 

For World Book Day I have done a bit of looking around and found that there are some great books available which represent Disabled Children. A great article I found was in the HuffPost about a variety of books which feature Disabled people as the main characters. In the article there are a number of different representations, the best part is that in some of the books the Disability isn’t even the main plot line. Which is fantastic. After reading it I sent the article to a friend who teaches in a primary school and they loved it.

Part of the problem is not just having books about Disabled people, but also having them be written by Disabled people as well. So you know that as a Disabled child  ‘hey this book has someone in it like me’ then they can be told the Author is like them too. It is about allowing people to see themselves in stories and know that the person behind the story is able to understand how they feel. 

Whilst looking at wether representation is better today than it was when I was in school I came across Pablo and the Noisy Party. There is a TV series linked with the book which is brilliant because as we all know everyone learns differently. Written on the books Trust Website is ‘This empowering series competently reflects neurodiversity and like the TV series, has been developed by writers who are themselves on the Autistic spectrum, and is based on real-life experiences.’ When I saw this quote on Books Trust it made me smile to know that the comment I made in the previous paragraph is trying to be addressed. Children need to not only see themselves in books, but know those writing them are like them too. 

The other part of the problem is having access to these books for all children. It can not just be the case that we talk about them only to parents of Disabled children. They need to be in book boxes in every school. Otherwise how does it just become the norm that the woman in the street is using her white stick to feel the floor beneath her feet and get around safely? Or that the man wears headphones in the supermarket and hums quietly as he puts his items into his basket because he could be Autistic? 

These questions need to be addressed and by writing this blog have made you a bit more aware that these books are out there. You just need to look. But them being out there is not enough. They need to be in classrooms and libraries and they need to be seen as the norm. Hopefully by writing this and also in sharing the book list with my friend I have done something to help make a difference. 

Here are the links below to some of the things I discovered whilst doing this blog. 

Until next time,

Philippa B.

If you have enjoyed this blog and would consider donating to my fundraising for The British Heart Foundation and the Children’s Heart Surgery Fund, please click here

Pablo and the Noisy Party https://www.booktrust.org.uk/book/p/pablo-and-the-noisy-party/ 

Fun in the Sun https://www.scope.org.uk/advice-and-support/storybooks-featuring-disabled-children/ 

Disability Horizons- https://disabilityhorizons.com/2019/09/8-books-with-a-disabled-character-as-the-lead-or-focus-of-the-story/