Nystagmus Awareness Day

Hello again,

I am currently on my week off. Got a hair cut booked in, a trip to Whitby and seeing a friend next weekend. So I figured I would write my blog earlier than planned and then I’m not in a rush.

The 20th of June is Nystagmus awareness day. Nystagmus is an involuntary eye movement where your eyes move from side to side, or maybe up and down, or even in circles. About 1 in a 1000 people have this condition so it is more common than you might think. You might not think it sounds too bad, but what if I described it to you like this; it feels like you’re on a roundabout and you’ve just stepped off, you feel very wobbly and quite dizzy. Even when you close your eyes you still feel sick, even if you sit down it doesn’t stop. You feel like your eyes are knocking from side to side in your head and you can feel it. In order to try and reduce your wobbly eyes you tip your head to one side and try get your eyes to focus. But, they don’t. As well as having Nystagmus I also have a squint, so my right eye looks inwards.

The other big problem for me and I’m sure other people with Nystagmus will agree is motion. Remember I said I can’t watch TV when my eyes are more wobbly than normal? I often can’t watch things that are zooming around too quickly, another reason why I don’t like flying bugs. They’re too small and I can’t track them easily enough. Imagine trying to trap a spider under a glass when you can’t even focus on the darn thing when it’s stood still going ‘come on!’

Due to placing my head on one side I then get neck pain quite frequently. I often get told to put my head up straight. Well, how am I supposed to do that if all the world is moving when I do?

I don’t know about the rest of the Nystagmus community but when I’m in pain my eyes tend to wobble a lot more than normal. This makes certain times of the month quite stressful as I can really only lay in bed and listen to the radio as sitting up is too painful and makes me feel even more dizzy.

The Nystagmus community on Twitter is wonderful. There is a wonderful # called #WobblyWednesdays. You’ll find a lot of us on there. If you have a wobble and are feeling a bit down about it I would reach out to the community. We are in this together and while we might not always see clearly we can still help one another out. Emotional support can be a big thing. Learning coping mechanisms and sharing your ups and downs can be a great way of dealing with the stress of Nystagmus.

If you’re still not sure about sharing your story on Twitter then don’t worry, you can always check out The Nystagmus Network, or the RNIB. They are fabulous charities and can offer you support. We need to make sure we all know there is help out there.

The purpose of my blogs, if this is the first one you have found is this; disability is not a dirty word. Disabled people shouldn’t feel undervalued or less than those without disabilities. Disabled people are people.

Thank you for reading, if you would like to get in touch you can email me randomlyanxious@gmail.com, or follow me on Twitter @PhilippaB. Or follow my photos on Instagram @VisuallyImpairedPip

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