Following my introductory post, I feel as though it’s only right that I elaborate on one of the points I made there. If you’re joining this space from my Instagram – hello, hi, – you will already be familiar with the fact that I’m vision impaired due to a condition called Retinitis Pigmentosa.
But, despite snippets of information I’ve shared on the grid, vision impairment isn’t a topic that I’ve felt particularly confident in talking about, ever if I’m honest. But, as I grow up, my confidence is slowly increasing, and I want to make a conscious effort to raise awareness, and hopefully help others who might be in a similar situation.
You’ll probably become very familiar with the facts of my sight loss story as I continue to share my experiences; goodness knows that I have plenty of things to write about. But let’s start with the basics, shall we?
Living with Retinitis Pigmentosa
I was diagnosed with Retinitis Pigmentosa (RP) when I was six, three years after my initial symptoms were noted.
My parents started to notice something wasn’t quite right; noting how I was finding it difficult to see in dim lighting conditions, and that I was also a little reluctant to play with other children.
From that point, Â we went back and forth to hospital as medical professionals and ophthalmologists tried to identify the root of my symptoms.
RP was quite a rare disease at the time and this is why it took over three years for me to get a formal diagnosis.
When I was first diagnosed, I was registered as being Partially sighted. But, as the years have gone by, my eyesight has deteriorated and I was registered blind/severely sight impaired when I was twelve.
I’m sixteen now and I still have some remaining eyesight, but it is much worse than it was a few years ago.
As a child in primary school, I found it tricky to take part in certain activities such as sport because if we would be playing football for example, I would never be able to see the ball and I would always be scared that it would hit me. I always misjudge where an object is, I might think something is really close to me but it’s actually further than I expected and vice versa. This results in many bumps and crashes, but I’m learning that it’s all part and parcel of this journey for me now. Through realising that, I’m learning to laugh at some of my misfortunes too. If you can’t laugh at yourself, who can, eh?
In terms of the wider impact my eye condition has on my life, it does mean that I’ve had to take to learn to navigate the world in a slightly different way to others.
I started learning braille when I was in primary school and have now learned it in three languages – Welsh, English and French. Braille is a code, if you will, comprising of six dots that form to create different letters of the alphabet, offering vision impaired people like me the opportunity to read with their fingertips.
My time in primary school also saw me pick up the long cane for the first time, but it’s safe to say that I wasn’t a fan. I’m on the verge of returning to having mobility lessons with my cane, but that’s a story for another day.
I’m planning on delving deeper into the specifics of my eye condition and how I see the world but, for now, I’ll leave you with this description:
My eyesight is like a camera that is constantly out of focus. That focus deteriorates day-by-day and It’s like the shutters are slowly closing in, casting dark shadows around the edges of the image.
That’s just a small glimpse of life with Retinitis Pigmentosa for me personally, but you can expect a lot more stories in the near future. I have plenty of awkward, emotional, and funny moments to share with you!
I hope by sharing my experiences, I can help to educate people on subjects such as vision impairment and I hope I can help to tackle the stigmas that so tightly surround it. I also hope I can spread positivity to others who are going through something similar to me and that we can all, in time, benefit from hearing each other’s stories.
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The Comments
elzthebelz
It must be really frustrating to know that your sight is deteriorating and that there’s very little that the doctors can do to halt it or reverse it. I can’t imagine loosing any usable vision due to lack of light. I can only sympathise slightly as my vision isn’t great in the dark but I’m lucky enough to still be able to see. How do you find your mobility is affected during the winter months when days become darker quicker?
My Blurred World
elzthebelzYes it is very frustrating but at the end of the day I remind myself that there are people out there who reasearch every single day to try to find a cure and I admire them for doing that. I do find my mobility to be difficult in the winter months as the days are generally darker therefore I do find that my vision deteriorates during this time also which makes it even harder. But I do find ways to make it easier. Thank you so much for reading and commenting 🙂
elzthebelz
My Blurred WorldThat’s ok me dear. I think it’s nice to be able to share our experiences of visual impairment as we are the ones who can truly understand what it’s like living with impaired vision. What kind of things do you do to help you during the night then? if you don’t mind me asking of course.
My Blurred World
elzthebelzI totally agree, it definitely helps to share experiences and communicate with other VI people. And no I don’t mind you asking at all, if I’m out and about at night I always tend to depend on other people who give me sighted guide but I am now trying to use my cane more so i can be a little more independent.
elzthebelz
My Blurred World:D. I always prefer people asking questions rather than just making ignorant assumptions and trying to help but just cocking it up. I think knowing what works best for you is always important whether that’s asking for help or challenging yourself and knowing what you feel comfortable with and where ones limitations are.
My Blurred World
elzthebelzYes i do too! I get a lot of people who make assumptions whereas if they’d ask a question before assuming things then they might understand the situation better. And yes that is very true, every individual is different therefore everyone’s way of working is different, some people might prefer using one mobility method rather than the other, I am personally trying to try out different methods of mobility to see what works best for me.
megan fox
I was diagnosed with Parkinson’s disease nearly 4 years ago, at 51. I had a stooped posture, tremors, muscle stiffness, sleeplessness, slow movement. I was placed on Sinemet for 7 months and then Sifrol and Rotigotine was introduced which replaced the Sinemet but I had to stop due to side effects. Last year, I started on Parkinsons disease herbal treatment from Madida Herbal Clinic, this natural herbal treatment totally reversed my Parkinsons disease. Visit http://www.madidaherbalcenter.weebly.com or email madidaherbalcenter@gmail.com. The treatment worked incredibly for my Parkinsons disease, i have a total decline in symptoms including tremors, stiffness, slow movement and others.