Hello everyone and welcome back to My Blurred World.
I hope you’re all doing really well.
I often talk about the positives of being blind/vision impaired here on my blog and that’s because i like to think that I am quite a positive person. I believe that it’s important to approach life in a positive way despite living with a disability, some people may find this difficult at times and that’s ok because I know it’s not easy. I understand that positivity isn’t the easiest of things to maintain and I know that it’s important not to let that positive mind-set over rule the realities and what life is really like. It gets hard sometimes but I try not to dwell or think about that too much.
On the other hand, I’ve always said that I don’t like to sugar-coat anything and try to be as honest as I possibly can both on and offline because I believe that honesty is always the best policy as cliché as that may sound. With this in mind, I decided that today I would share with you what losing sight is really like from my perspective. Please note that I’m talking about my own personal experience(s) and I am in no way talking on behalf of anyone else who has a vision impairment because everyone’s experiences are different and I don’t want to generalise anything,
I started losing my sight at the age of three. This is something I’ve mentioned many a times before on my blog so if you’ve been reading my posts for a while you’ll know the background and the story of my journey but here’s incase you don’t. My parents realised that I couldn’t see very well in the dark as I said when I was three, night blindness is one of the most common symptoms when it comes to Retinitis Pigmentosa which is the condition I live with. It took three years before I was finally diagnosed with the condition which affects 1 in 3,000 to 4,000 people so it seems.
When I was first diagnosed, I was registered as being partially sighted but as time went on and as my vision gradually deteriorated I was registered blind/severely sight impaired in 2010 when I was 12 years old. My vision has deteriorated even more so since being registered blind, it tends to fluctuate from time to time meaning I have good and bad days but the ‘good days’ are now very rare as I notice the deterioration in my vision everyday which I can’t describe as being anything else but daunting.
Living with RP has resulted in me making adjustments to my life in order for me to live it as normal as possible, whatever normal may be. Growing up with deteriorating vision hasn’t been the easiest of things to do as you can imagine but I’ve been able to make those changes and achieve things such as good GCSE and A Level grades which I’m very proud of. I attended mainstream school which was something I always wanted to do and I’m so glad that I did as it gave me the opportunity to become more determined to cope with my sight loss as I didn’t want to feel ‘different’ in an environment full of people who may of thought that I was different to them.
Although I try to focus on the positives I can’t deny that living with sight loss can make me feel down at times especially recently as I seem to notice the deterioration in my vision in a way I’ve never done before. One thing I haven’t mentioned on my blog or on my social media platforms as of yet is the fact that I’ve been diagnosed with another eye condition in the past few months, a condition called Optic Disc Drusen which I have been told is a condition that causes lack of circulation to the back of the eye. In my case, this results in vision black outs meaning that my sight is completely lost for about a minute or so which as I’m sure you can imagine is very frightening. These black outs can be very frequent on some days whilst not on others. Although the condition wouldn’t result in loss of vision than more than a few seconds to a minute, due to my RP I do sometimes feel scared as I often think if my vision will come back after one of the black outs happen. I’m aware that this is probably me over-thinking things but as my vision deteriorates it’s just something I seem to be thinking of more often than usual.
Losing sight as a teenager has proven to be very difficult for me personally, it can be quite frustrating at times as I have to make adjustments to my life when other people my age wouldn’t have to do so. I can’t go to unfamiliar places independently since I wouldn’t know the surroundings meaning I’d be completely lost as I wouldn’t be able to see where I was going. It’s rare that I could walk around town without having to use my cane or depending on someone else to give me sighted guide. I think these are often things that a fully sighted person would take for granted as it’s not something they have to think about.
For me personally, living with sight loss can be very exhausting. It’s tiring in the sense that I have to concentrate more to see something and it feels like there’s constantly something to do with regards to my disability, whether that be a hospital appointment that needs to be attended or a form that needs to be filled in to receive the support I need.
So what is the reality of losing sight? As I said before, there’s one word to describe it – daunting. For me, it’s the fear of the unknown, not knowing how long my remaining sight will last, not knowing how many black outs I’ll have in a day and not being able to control that and not knowing how I’ll feel about losing my sight in the future, how it will affect my emotions and my mental thoughts.
Although I try to stay as positive as possible and I try not to let my vision impairment define me, who I am and how I live my life, it’s not always the easiest of things to conquer. I will always try my best to maintain a positive outlook on life, positivity is how I deal with things and I’m proud of the fact that I can be positive when it comes to my sight loss despite it being difficult sometimes.
I have a great supporting network around me in terms of family and friends and that also helps me through the reality that I’m losing a little of my vision everyday, I’m so grateful for the support I have that surrounds me and that I can talk to any one of those people if I’m finding it difficult.
Blogging about my experiences also helps in a way I never imagined it to, it enables me to engage with others in a similar situation and realise that I’m not alone. Living with sight loss can be isolating, it can be frightening and everything else in between but as long as you can find a way to accept it and realise that there are others out there who are in a similar situation, you’ll soon realise that’s a feeling of relief and it’s a battle that no one has to face alone.
If you are living with sight loss, if you’re going through the process of losing your vision or if you have already lost it, please feel free to share your experiences and thoughts in the comments as I would love to hear from you. I want my blog to be a platform for everyone to share their thoughts and for us to come together and support each other.
Thank you for reading as always.