UsherOnTheMove

Life With Usher Syndrome

  • Why start this blog?

    I have started this blog so that I can document life with Usher Syndrome Type 2C (USH2C). I will also be writing about any new things I am learning. My goal is to work remotely and earn while I travel and document my experiences.

    I also want to develop my ability to write and express my thoughts and anything else that comes to mind.

    I’ll be discussing different topics here and will categorise them as I go along،

  • Working with Usher Syndrome

    I’m currently working as an IT analyst and work four days a week in the office and one from home. Over the last few years, I have come to the realisation that I really need to be able to work from anywhere and travel before I’m unable to.

    I noticed differences in my vision which I go through in this post here.

    I really like the flexibility of being able to travel where I can and not be tied down to a job where I spend at least two hours a day commuting and travelling between the sites which is the nature of my work.

    During the autumn and winter months, moving around outside in general is starting to become difficult, I would say, over the last three years I’m starting to see noticeable differences in my ability to see in low light and darkness. As each year passes by, I notice that as the days shorten and it gets darker earlier during work hours at around 4pm-6pm.

    When work finishes at 5 and it’s dark outside, walking takes a gruelling roll on my eyes. If there’s not many people out there, my eyes can process my surroundings without much difficulty, I can’t keep my head stationary though, I need to keep looking left right, slightly down, since my ability to decipher peripheral cues is diminishing steadily and I don’t want to risk missing something and getting totalled by an unidentified object.

    Walking in the dark, takes a toll on the eyes and also on the mind, there’s a lot of mental power going into very mundane tasks which normal sighted people wouldn’t notice at all.

    Over the years, I’ve noticed my eyes are much more overwhelmed and tired and I need to take more time to rest them before I’m able to carry on, sleep needs to be on point, I feel very good when I’m not looking at a screen just before sleeping, I can count on my hands the amount of times I haven’t looked at a screen before sleeping and I will be honest, when I’ve woken up after a good night’s sleep of 7-8 hours, I feel very good and my eyes are well rested. I should make this a regular habit.

  • Things I’ve Noticed With My Vision

    Over the last few years I have been making a note of things I’ve noticed with my vision. This is what I have I’ve documented so far:

    • I have to actively look for push buttons when opening doors – Sometimes these may be in obvious locations like next to the door on the wall. There have been times when the buttons have been much further away from the door and out of my peripheral vision so it takes a few seconds for me to scan the wall and the area close to the door to find it. To avoid this issue, if I am usually with someone else, I let them go ahead and they can open the door and I will know where the button is for next time. If I am by myself I usually scan the wall and check on my way to the door, I usually find it by the time I get there.
    • Handles on different doors – handles and door locks are usually in different locations on doors and sometimes out of habit I might reach out and the door handle is slightly higher or lower or not even in range, this requires me to look at the door and scan for the handle or lock.
    • Going to new locations and buildings – Visiting new locations and buildings can be a bit of a headache if you do not know the layout, I now make a habit of checking the street view on maps beforehand to survey the entrance and main road and if there is anything outside the building (roadworks, pillars. bike racks etc.)
    • Matte phone cover to prevent glare and reflections – I have noticed I struggle to see my phone screen outside due to reflections. This happens during the day and more noticeable when it is sunny. I have applied a matte screen protector and this has helped reduce the glare and strain on my eyes.
    • Phone – When I had a phone which was black, I would struggle to find it if I had left it on a black or dark coloured surface., I realised I would need a high contrasting case to find it. I now have a phone which is bright blue and this helps when finding it and scanning around. As a general principle, I now leave things in designated places and don’t leave them in random places. This makes it easier to find them when I need them.
    • Zoom on PC and scale plus cursor size and colour – Increasing the scaling on my PC has helped prevent eye strain and squinting, also increasing the size of the cursor has stopped me from losing track of it when working. I noticed this became a growing problem since I use three screens and kept losing track of the cursor when working.
    • Struggling to see clothes inside cupboard – When looking for clothes in my wardrobe, I have difficulty seeing dark coloured clothes due to the placement of the light on the ceiling and the low light environment created when I open the door. I have now got a round light which I can stick on the inside of the door. This light has a sensor, so when I open the door, the light turns on and I am able to see the clothes and contents of the cupboard.
    • Struggling with open plan offices – I have noticed I am only able to see the person who is in my central vision. I am unable to see anyone in my peripheral vision unless I move my eyes and look. I have noticed this when walking into a room during a meeting and I can see the person who I actively look at, I cannot see the others sat around them, so if I am greeted by verbally I can hear them, but if they wave, chances are, I won’t see them.
    • Commuting and travelling in the dark in winter – During the autumn and winter months, it gets dark at 4-5pm and commuting home after work becomes a bit of a struggle as there is a rush of people on the main streets and stations, this takes a toll on my eyes as people and things are moving quite quick and I have noticed my eyes take their time processing what is going on around me.
    • Floaters and flashes – Sometimes I see floaters and flashes which are not frequent. I do however sometimes get a swamp of flashes and floaters when I move from a low light to a well lit environment. For example if I step off the the dimly lit train onto the platform when the sun is out, my eyes are overwhelmed with flashes and I have to move to the side as quickly as possible and recalibrate.
    • Low kerbs – I can sometimes struggle with depth perception when going from the pavement down to the road or vice versa. If the kerb suddenly disappears or drops due to road damage or construction, then this can cause a misstep, I really wish the local authorities would take more care in making sure these are repaired and pavements are paved properly.
    • Going up steps in public – Sometimes steps in public do not have the tape or paint at the edge to contrast between them or they may be the same colour. Having no distinction between each can cause missteps and sometimes cause trips and falls, especially during rush hour when people are moving quite quickly.
    • Visiting places you’ve been to before – When you visit a familiar place a few years later and realise the scope of your vision loss and what you can and can’t see in your periphery. This gives you a rough idea of the progression of vision loss.
    • Taking out utensils from cupboards – When reaching for a utensil in a cupboard and not being able to seeing the utensils in the periphery and then knocking them down.
    • Prams trolleys, small kids, pets – These things are below my peripheral vision. If I am in a low built area without many people then it is easier to process what is happening around me and it’s easier to spot these things. However, in rush hour, when there are lots of people and busy times, it becomes much more difficult to process my surroundings as things are moving quite fast, if the lighting is low or it is dark, then this makes it even more difficult.
    • When I was playing Red Dead Redemption 2, I had noticed hint and tips are in the corner of the screen which is outside my peripheral vision، When a character is doing something of significance, I pay attention to this part of the screen otherwise I will have probably missed it and not know what to do next.
    • Reaching out of something on a table and then knocking a glass over in the flight path. I usually look at what I want to pick up and then check the path for obstacles before reaching to pick it up.
    • Reaching out to someone in the dark and poking them in the eye.
    • Shaking hands and when people hand you things.
    • Sun shining through trees and the shadows on the floor are quite trippy, it could be the effects of glare.
    • Wearing sunglasses makes it too dark, taking them off increases glare and eyes are squinting pretty much, a cap does help a bit, prescription sunglasses may help.
    • In the cinema walking around and looking for the screen and feeling your way around, it’s literally camouflage, dark carpet, dark walls, and dark stairs, there are no contrasting colours which does not help at all.
    • Heat causes eyes to get red, it’s not painful, but others can see that my eyes are red and comment on it.
    • I now jump scare a lot from things or people that suddenly enter my peripheral vision.
    • When returning from my travels abroad, I notice that my vision has slightly gotten worse.

    I will be coming back here and updating this list when I notice something else.