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"Be who you are and say what you feel because those who mind don't matter and those who matter don't mind"

Dr Seuss


Thursday, 27 June 2019 15:26

Olivia's Usher Life - Last few months of emotions

Written by  Olivia
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Hello Everyone! Would like to wish you all happy deaf blindness week! I’m so sorry that I haven’t posted in it feels like ages! But I’ve got soooo much to tell you all and I can’t wait to tell you everything. I think this blog is going to be a very long one so I think you will need a lot of time to read it, sit down with your favourite thing to drink and a few snacks and I just hope you are looking forward to reading it. The things I am going to tell you are, going to the hospital and getting tests done, getting an Apple Watch, more stuff about my cane and meeting others with usher syndrome such as Molly Watt so here it goes....

So let’s start from the beginning of these hectic months, so I went to the hospital to have an electro diagnostic test where I had my eyes numbed and I had wires put under my eyes to test my muscles and nerves in my eyes, not going to lie I was sooooo nervous because I had no idea what was going to happen and I kind of liked it that way but then I didn’t if that makes sense. Like I knew that if I didn’t really know I wasn’t going to freak out as much, honestly it wasn’t that bad! There was just no pain at all which was soooo good, the only bit that wasn’t very nice was the eye drops and then when the doctor put these sticky pads on my head he had to use some sticky glue for it to stick and it was gritty so it hurt when he was putting it on my head it was like a scratch but yeah it really wasn’t bad which was such a relief haha!!  My next appointment to go to my normal hospital is in August when I will find the results as much as I do want to know my results it’s not going to change anything, as you all know there is no cure, it’s still upsetting but there’s no point waiting for one to happen you’ve just got to keep going!! The people who have had eye drops will know what I mean haha, your eyes do just water!

Next up is about MY APPLE WATCH!!!! I haven’t wanted an Apple Watch just for the fun as you know I love technology haha! But now my eye site is getting worse I’ve found out that an AppleWatch is like the next best thing because it’s small for my peripheral vision and it vibrates to notify me when I’ve got a text or call. I can answer calls on it and I can hear it very well and it’s always with me, so it’s very handy! Another thing I’ve learnt is that it can tell you where to go if your on google maps, I had a go on the weekend it was really good, different taps tell you to go left or right and then when you have reached where you have to go. It is a very good gadget so anyone with usher syndrome I would definitely recommend it. I’ve only had it for about a month and it’s changed my life completely!!

So here goes the more emotional talk, as you all know my views on having a cane from a previous blog.  The lady has come in again and has ordered a cane for me, like really? I sooo don’t want one but then I’ve got to try! We were going to have a go with one she has brought in but because of exams being on we couldn’t which I was quite happy about haha! I just hate the fact that when I get the cane out I’ll be read as blind, I’ll become a book! I just don’t want to be seen as blind because I’m just scared that people will say stuff like omg she’s blind or oh yeah let’s trip her up she won’t see me or even laugh at me because I’m holding this cane. Just yeah I’m not really happy about it but at the end of the day it will tell others to stay away from me and to just mind out the way, if they don’t they will get hit haha! But yeah no one is alone, people do have canes and manage so I’m sure I will. Once I start training I may enjoy it which will be good haha!

The final thing I want to talk about is on the 22nd June there was an Usher Kids Day for children and families who are suffering with usher syndrome and need help and get to know others with usher syndrome. I’m not going to lie I really really didn’t want to go because I was like what difference is it going to make? But believe me it made me way stronger and I met some amazing people who I can now talked to about my condition and help me with any problems. I spent a whole day there and

everyone was so nice and so understanding and it was nice to know that I wasn’t alone. It was very emotional hearing other people’s stories and about how they felt but also how similar everyone’s symptoms were! It just brought a massive relief that I’m not the only ‘deaf blind’ person in the world. One of the best things that happened to me was meeting literally like my hero Molly Watt who also has Usher Syndrome, I don’t know how I would of coped these couple of months if it wasn’t for her

positivity! She is literally the best person ever in the world and just to meet my idol was sooo emotional! She was just soooo lovely and it was really nice to get to know her even more although I was in a right state haha how embarrassing!! 



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