Hey guys. This morning I wanted to shed a little light on one of the conditions that affects me most daily. It is called 'Nystagmus' and there are multiple kinds of this condition. The condition causes repetitive and involuntary eye movement that can go side to side, up and down or a circular motion. I have pendular Nystagmus meaning mine goes side to side.
My mum first noticed the signs of this when I was only about 8 weeks old but I wasn't diagnosed until I was much older because there wasn't much knowledge around the condition. It is also very common for people with Albinism (I have this too) to have this condition, so for me this also means I have very limited vision. Some people with Nystagmus wont even need to wear glasses so, like many eye conditions, it is very different for each person who suffers and that is why it is so hard to explain to people what I can and can't see.
So, it is very hard to explain my general vision, and also hard to compare to others. I have a cocktail of eye conditions and will be the only person who has all of them, and the severity I do (that sounds drastic considering there are 7 billion people lol) Anyway, I thought I would try and explain to you what things it changes and how some things look to give you a little glimpse! The condition is known to affect balance, coordination and depth perception.
Depth for me is deffo the worst and it affects my mobility significantly. I often see a curb as flat. Some curbs have low points and high points but they usually look all one level to me. I am sure the kids absolutely love the surprise bump down a high curb in the pram! Hetty (my guide dog) will always stop at a curb but this is usually a down curb before crossing a road. She is fab and always on the ball, but unfortunately she can't shout up and let me know if its a step down or flat haha! This is the same for staircases, although because of the larger scale these can sometimes look like a slope to me. A lot of the time the edging on a step is outlined which makes it much easier to make out different levels. This was one of the first things I was able to get some support with as a kid. I got my first White cane when I was 5 (ish). At the time it was only a symbol cane for a bit of awareness but not too long after it was changed to a long cane so I was able to get a feel for myself when I came across a staircase. I could tap the edge of each step so I would know how deep they were and also how many. Hetty will always stop at the top or bottom of a staircase, with her front feet on the bottom step or sat down at the top, so I know which it is. When she stops, I can then give her the command of 'forward' and I can step up or down, using he position of her front feet for depth. The harness she wears sits over her back so I can feel her front shoulders and legs and where they move.
As amazing as Hetty is, she cant help with the other side of depth perception. Pouring drinks and filling bowls is a big challenge for me. I find it super tough to see how full a glass is, especially water in a clear glass haha! So there are things I have found that help. You can get liquid level indicators online and they are pretty cheap. They go over the edge of a cup and they will beep when you have filled the cup to the right level. Depending on your level of vision I would 100% recommend these and I will drop a link for a simple one too! I have also found that mugs that have a contrasting colour on the inside really help! Give a few colours a try if you can but brighter colour seem best as tea and coffee are both dark. I would also like to add that it's not always a bad thing, just ask me to pour your drink for you before a night out you will be as blind as I am before you leave the house lol.
The other thing i want to mention is all around reading and learning. If I look at a piece of text, wether that be in a book, on my phone or even the TV guide on the tele, the letters and words appear to move. Letters more so than words. They look as if they are swapping places with each other and then moving back. This gets much worse the more tired I am. When I am tired my eyes move faster, which then of course makes things I see move faster too. Some things do help this but not as much as I would like. I love reading. Larger print does help along with a bolder font. Also a bigger spacing between words helps me focus on one word at a time. Large texts and long paragraphs are the hardest to read. I am now finding it pretty ironic that this blog is full of long text so if you are reading this and also have nystagmus, I am sorry! I will deffo be working on how to make my blogs more accessible. Long story short, audio books are amazing! I know they don't compare to the smell of a brand new book, but they are a wonderful alternative. Through school I had different things in place to help me. Every child in the UK that has additional needs will have a 'statement' when they go to school and this will then be broken down to provide the child with the support they might need through each year of education. I was lucky enough to have a scribe through secondary school, so things that were written on the board that needed to be copied, would be written down for me so I could refer back to my notes. Sometimes sitting at the front of the class doesn’t help. I was far too slow with reading in focus to take notes and keep up. The slowness of my reading also meant I was allowed extra time to complete my GCSE exams. These things were easy for the school to provide and it meant I had equal opportunities throughout my education.
I really wanted to highlight the support I had through school. I know there are a lot of children that do not get the correct support and guidance they deserve. If you are not getting what you need, then you have to make sure you ask. Don't feel embarrassed, | know that's not always easy. Just take a moment and realise that you deserve the support because you can't control how your condition affects you and your work. On the flip side of that, it has always been hard for me to see kids grow up with conditions like this when the people around them don't know how to help them build enough confidence in themselves to see past the condition and what they might be able to achieve despite their struggles. As much as I totally understand it is a very scary thing to learn about and to find the best ways to work through it and find out how you might need to live a little differently. Please don't think about all the things you might not be able to do. Think about way you could try and make them happen for you! Doctors told my parents that I wouldn't be able to ride a two wheeled bike, but as a kid I learnt the same as my sister did. The same as all mainstream children do. All too often I think it's made too easy to use poor vision as an excuse to sit behind a screen or stay at home and only go to the places you know, where everything is very accessible and you feel safe. I understand why some people feel like this because the world is most definitely not an accessible place. Things have come on leaps and bounds since I was a kid but it is so so tough to accommodate for every persons individual needs. My biggest advice is to find your independence. For me that came when I got my first guide dog. My life changed a crazy amount and I wish everyone could find their independence at such a young age. I was 13 when I took the bus on my own to meet my friends. Was I terrified? Absolutely! Do I still get nervous getting on a bus on my own sometimes, even now? Yes! However I am able to make the decisions on my own that I feel will be best for me, and there is nothing more rewarding than going out on your own and doing something that someone else said you couldn't. Take some time and think about things you would like to do, and use the support network you have around you to help breakdown the steps you need to take to get there. Practice things, it wont happen overnight and sometimes things won't work, even after you have tried different options. Accepting that you won't be able to do all things on your own is also an important part of discovering what independence means for you.
I will repeat this as often as I can. Nystagmus is NOT a life limiting or life defining condition! It has its challenges and some things I will not be able to do in my life, but the things I have already achieved outweigh those I can't do. Your support network will be the most important thing for you, they are there to help you. Use them as much as you can and as often as you need to. Whether they are family, friends or a social media group, anyone that you feel like you can talk to about the issues you face. Asking for help is okay, but trying to do things on your own is okay too. Find what is best for you, and stick to it.
H x
P.s. Nystagmus can also be called Dancing Eyes
P.s.s. My tattoo says Dancing Eyes in Braille
P.s.s.s I can't read Braille lol but I would like to learn