Retinitis Pigmentosa update – My visual impairment

Hello everyone and welcome back to My Blurred World.

I hope you’re all doing well.

Today I thought I’d share yet another post relating to my visual impairment. I thought I’d give you all an update if you will on my vision and how I’m coping with it. I will also be giving you an update on what’s happening in my life at this moment in time therefore you can consider this post to be a life update as well as an update on my visual impairment.

I have written  a post about Living with Retinitis Pigmentosa (RP) when I first started my blog in April 2015, you can read that post here if you wish to do so. I talk about the background of my visual impairment in that post by explaining the process of my diagnosis and how the condition affected me in my primary school years and in my day-to-day life.

As it has been over a year since I published that particular post I thought it was only right to give you all an update on my visual impairment as there are a few things that have changed over the past year. I hope you all enjoy today’s post and lets begin.

Just to start off with a bit of background about my visual impairment, I was diagnosed with RP at the age of six although I had been going back and forth to hospital since the age of three as that is when my parents started realizing that there was something wrong. To begin with I was registered as being partially sighted but at the age of about 13 I was registered as being blind/severely sight impaired.

My vision is constantly deteriorating, I have some good days and others bad. I’ve had a number of rough patches along the way, including a huge deterioration in my vision when I was 15 years of age which resulted in me completing all my GCSE exams in the medium of braille,  to do so I was required to learn braille in three different languages. This was very difficult for me but I managed to do it and I was very happy with the grades I achieved.

My vision gradually became a little bit better in a few months after my GCSE exams and I can now access all my work in large print or electronically but I do occasionally listen to documents via voiceover as some days my vision is too bad to access print.

In my previous post about RP I mentioned that I was starting to make use of the white cane but said that I wasn’t at all comfortable when using it. Over the past year I have become much happier and much more confident when using my cane and I can now use it in public. Even though I can still feel self conscious when using my cane, I do feel much more confident than I did a year ago and this to me is a big step.

In terms of my vision itself at this moment in time I do feel as if it is gradually deteriorating but this is what is to be expected to happen with the condition I have. The deterioration in my vision results in my feeling quite anxious at times especially when walking around, I feel very anxious when walking around school for example and this sense of anxiety is very controlling. I’ve always felt quite nervous when walking around school when it’s busy and when the corridors are crowded but I’ve managed to control those nerves in the past but now I often find myself panicking as I walk through the crowds. I find that I crash into people a lot more than I used to, it’s always been a problem but it hasn’t been this bad before. I tend to stumble over things which can result in a few embarrassing moments. I also find that things that I don’t think are there just appear in front of me which again results in me crashing into them. I have recently also felt very nervous/anxious when walking down stairs/steps, taking school as an example once more, I don’t use my cane there as I feel self conscious when doing so, I know that I previously mentioned that I now feel comfortable when using my cane in public but using it at school/sixth form is a completely different story.

As I don’t use my cane at school I tend to always walk down the stairs by holding onto the railings for support but even doing so I have felt uneasy when walking down the stairs recently and I don’t know what the reason for this is. As I cannot necessarily see where the first step is located I often miss this or I miss the last step as I think that I have reached the end of the stairs when in reality I haven’t. I’ve never experienced this at school before as I’ve always been confident when walking around as I’ve become familiar with the campus therefore I am not sure what has resulted in my un-easiness when walking downstairs recently.

As I mentioned in my previous RP post, I do suffer with night blindness which means that I go blind when anywhere is dark, again this can be a problem at school as some pupils can often be childish and play with the light switches, when this happens as I’m walking through the corridor I often just freeze as I don’t know what to do, I do try to follow the wall just to make sure that I don’t fall over or walk into someone but as pupils line up by the wall to go into the classes, following the wall might not always be possible which can make the situation very difficult.

I am now nearly 18 years of age and therefore will be starting a new chapter in my life as I am only a matter of weeks away from completing my A Level studies.  I will now be moving on to work, I was very fortunate to be offered a job following an interview last week,  I will keep the information about my job under wraps for the time being but all I will say is that it is a job within the sight loss field.  I will admit that I do feel quite anxious about moving on from school but I am also very excited and enthusiastic as it will give me the opportunity to improve my confidence as well as develop new skills. I’ll be honest, the thought of going into the world of work as a visually impaired person slightly scares me but I know that the support I need will be provided and the people I’ll be working with are extremely nice therefore this puts my mind at ease.

I’m hoping that entering the world of work will help the process of my guide dog application as this is moving very slowly. The waiting list for a guide dog is extremely long therefore the long wait is understandable but my personal application hasn’t developed recently as I was unsure of my next step following my A Levels.

As I’ve mentioned I do feel as if my vision is gradually deteriorating but in spite of this I do try to remain positive. I do feel down some days and those particular days can be very hard but I do try to maintain a positive mindset as in my opinion this is the only way that I can live a happy life. I never let my visual impairment get in the way of me achieving anything in life and I don’t think I ever will. I’m very lucky to have achieved many things in my life and I am eternally grateful for this. I’ve completed many work experience placements over the last few years and have also done some voluntary work and I’m happy that I have been able to do these things. When writing my personal statement at sixth form my head of year informed me that I had achieved much more things than any of the fully sighted peers in my year had done and that I should be proud of this. I am proud of this, I believe that living with a visual impairment has motivated me to achieve things in my life as I want to show people that even though I live with a disability I can still do anything that any sighted person would. I wouldn’t like to think that my vision prevents me from doing certain things therefore I don’t let it do so. I attempt to live my life to the full despite the fact that I have a  visual impairment and I would like to encourage others to do so too.

Living with Retinitis Pigmetosa is difficult, I won’t deny that and I’m happy to inform others of the realities of sight loss and the difficulties we face as I strongly believe that sharing this information is just as important as sharing the positive side. The fact that my vision is deteriorating is a daunting thought but as I’ve said I do try to remain  positive and approach life in a positive manner. This isn’t always the easiest of tasks but it is possible.

Nobody should limit themselves in terms of what they can achieve in life and I believe that no matter who you are, you CAN live a life without limits.

Thank you all so much for reading this post. I hope it helped you gain a better understanding of Retinitis Pigmentosa and how I deal with it on a daily basis. I know that I went off track slightly during the course of this post but I hope you enjoyed it nonetheless.

Please feel free to leave your thoughts on this post in the comments below as I would love to hear from you.

Again thank you for taking the time to read this post. Be sure to join me next time in My Blurred World. xox

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3 thoughts on “Retinitis Pigmentosa update – My visual impairment

  1. Pingback: Showcase Tuesday Week Thirteen - The Blog Centre

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