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.

What I bought from RNIB

What I bought from the RNIB. 

Hello again, 

A few days ago my order from the RNIB arrived in the post. I ordered a Ambutech black leather cane pouch (MP39) and Optima folding pocket magnifier 6× (MAG85). 

One of the things I really struggle with is reading numbers on bank cards. On some new cards the numbers are not raised. They are printed on the card. The other thing with new card is the fonts are bit cleaner, I think the numbers on cards are a little bigger on my own bank card. Another interesting thing I have found about bank cards is they have a new little cut out in them for your finger to rest in. This is particularly helpful when you can’t see well. Rather than looking, you can just feel for the cut out.  

So back to this magnifier, its a 6x magnifier which I used the RNIBs article to check which size is right for me. The magnifier folds away into a little circular hard plastic case. Which you can the put neatly  into a little leather pouch. Perfect for carrying around. 

Using it so fare it is good for  just looking at quick simple things. I would not use it for reading properly though as having to move the magnifier sets of the wobble of my Nystagmus. But so far I am very pleased with my purchase. It was £18.50 which for something I will find very beneficial I think is a decent price. 

The second thing I purchased was the Ambutech black leather pouch for my long cane. The reason I bought this is because I find when I go out and about, pre covid, I find myself struggling with keeping my cane neat and tidy. It also gets frustrating when you have nowhere to prop your cane. Meaning you have to lay it on the floor. Which means it is not very clean at all. It’s very important to try keep the handle of your cane clean, especially with how things are. So if you get the pouch you can just fold your can away and not worry about it unfolding itself. This is particularly hand when you’re on a long car journey. So you can put your can cane your bag and not worry about it getting in the way. The pouch is £26.99. 

Believe any cane user when they tell you it’s frustrating that they are unsure where to put their cane in the car. When it is not stored properly it means it moves around and there’s quite a bit of noise. 

The question I have for any of you is, what do you use to make your life easier? 

Hello 2021

Hello 2021. 

So last year was a bit of a wash out wasn’t it? I wrote a blog about the books I’d read, looking back on it now I did not read that many. Although the ones I did read were very good. So this year I’ll try read some more. 

One of the good things to come out of last year was purchasing my own domain name, pipxar.com. It was a really pleased with this as it got me back into blogging. After looking at a variety of websites to host my blog and talking to different people I settled on wordpress.com. I think it was a good choice. I didn’t bother with the email address though. I just kept using the old one I had. The main issue I had setting up my domain was that I used to call my blog Random Musings. This domain was already taken though so I had to come up with something different. For a bit of a joke me and my bother thought Pipxar might be a funny choice. Turns out it was an unregistered domain and I went with it. 

The other good thing to come out of 2020 was my decision to start a bit of fundraising for two amazing charities. One is The British Heart Foundation and the other is The Children’s Heart Surgery Fund. They are incredible charities which exist to help support those living with heart conditions. If you’re interested then click here and you can follow my journey as I aim to raise £3000 by the 21st of August 2021. 

Whilst writing this blog I took the opportunity to partner with my friend Beth, who is a completing her BHF funded PhD. I would definitely check out her blog. She’s very passionate about what she does and about getting more women into science. Check out her blog, it’s pretty cool. 

I think this year I will just continue with my blog and fundraising. I also aim to continue reading more. I use Audible because I’m Visually Impaired and it really does help me get more joy out of reading. I used to love wandering around Waterstones and buying books, but I soon realised audiobooks would have to be the way forward. Reading has always been something I enjoyed, but I slowly started to realise that the reason I was not reading as  much as I liked was because my Nystagmus was playing up even more if  I read physical books. Nystagmus, for those who don’t know, is an involuntary eye movement. It makes you feel like you’re living life on a roundabout and you feel sick. Check out my blog here

Anyway, thats me for now. I’m going to go. I’ll check in again later. There are a few ideas I have for my blog, with the help of my new moleskin notebook I will hopefully be a bit better this year at planning out my posts and getting them scheduled. 

I wish you all a happy and safe 2021!

See you soon, 

Philippa B.