StoryTime #2 – How one day, I could go blind.

Currently sat in a hotel room in Sofia. Flying to the UK tomorrow for a little visit and thought I would share another story time about my life. How one day I could go blind.

Okay, so I have to admit… the title was a little bit of click bait because truthfully right now my eyesite is 20-20 and has been since I was born. However it could be a slight possibility as my family burdens a rare and currently incurable eye disease called Retinitis Pigmentosa. 

Basically long story short, RP is where your nerves & cells is your retina (the back of the eye) slowly start to die and breakdown, thus gradually making your eyesight worsen. It makes it harder to see at night and one day you could wake up blind.  It’s also generic.

I’ve had many eye tests which currently show I don’t have any trace of it. Opticians have looked deep into my eyes (without buying me dinner) and can’t see anything! I think I’m lucky enough to have my dads eyesight as well as his ability to run pretty fast. Hopefully not his old age forgetfulness.

Currently the desease lies in my mums side of the family with my mum having it, my nan, my uncle and my nans late brother.

Women tend to get it gradually and knowingly whereas the men just wake up with loss of sight, which is a very scary thought.

Growing up it was hard watching my Mum & Nan with this. They both had so much life and soul, so much confidence,  so much independence and so much time do things. Back in 2008, before my folks moved to Bulgaria, my mum used to drive, have a well paid job at a call response centre and used to go out pretty much all the time! As her eyesight worsened, she had to give everything up, her job, her licence and register as blind. This was one of the main reasons my folks came to live abroad as it was so much cheaper due to  my dad was working twice as much and making himself ill.

Moving to Bulgaria was great for my parents, they’re surrounded by fantastic friends from our home town who I class as part of my family; who would do anything for them. However from time to time it breaks my heart knowing my mums independence has now gone and now has to rely on my dad for pretty much everything which can also cause a lot of strain and arguments. One of the main reasons why I think I’m still glued here for now.

We had a traditional Bulgarian power cut the other week. We usually get them once a month, lasts about 2 hours. Dad and I trying to use whats left of my smashed up iPhones camera to find candles. Mum gets up, walks leisurely to the kitchen and brings out the candels and matches. She said one thing that shd has over us is that she knows her way around her own house in the dark! Silver lining and all that!  It’s not all bad,  she has good days and can still see a fraction of things. She has her computer zoomed in at 400% so she can still play her Words with Friends game which makes her happy.

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My Nan on the other hand was a little different. Although her eyesight did worsen, she did seem to manage well. That was until she started falling about all over the place. It was her clumsiness that made it the RP much poor.   Taking sleeping pills and getting up for the bathroom on the wrong side of the bed and ended up falling down a flight of stairs, breaking her legs in 4 places.  Falling off a balcony into a Bulgarian peach tree. My nan being my nan has always been a very popular lady. Imagine a popular and well liked Hyacinth Bucket. She has a lot of help from all her friends back home which again is another comfort.

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Although there’s no cure right now for RP, scientists are conducting stem cell research which should be up and running soon with trials. Mums had a lot of interest from Bulgarian eye doctors in the capital who want to meet and study her eyes which I think she’s down for and I on the other hand will carry on getting eye tests.

One thing I suppose I should appreciate is that despite everything, at least my mum and Nan got to see me grow up before this hideous disease took their independence. At least it didn’t take away motherhood from them.

Nan refuses to get a mobility scooter. She said Dorris looks a rate nob in one.

and i’ve been begging my mum for months to get a golden retriever guide dog! Dad’s having none of it.    Tosser.

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If you wanted to research a little bit more on RP other you can go check it out by clicking here

 

 

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