A week today and I will be at Moorfields and will find out how much my vision has changed in the last 18 months. The last 18 months have flown by and I really can’t believe how quickly it feels that this appointment has come around. My anxiety is still high about this appointment, nobody wants to hear they have lost vision, or their vision is progressing, it’s devastating and I’m just worrying if this is the case, then I…
I have thought long and hard about posting this blog post and then I thought that at the end of the day, I use this to get my thoughts and feelings down and my thoughts and feelings are valid. It’s not my intention to offend anyone, just to give my opinion. My Moorfields appointment is coming up soon and I can’t even express the anxiety and worry that this has created inside of me. I have been crying at the…
I have been asked a lot recently what my vision is like and how I manage to still do my make up so well and read small print. I was diagnosed with Stargardts at the age of 32, so I have the later onset variant with something called foveal sparing (for now) which means that the very centre of my eye is quite clear at the moment. The picture I have posted of my little boy and Loco is the…
Today is world Braille day. On this day in 1809, Louis Braille was born in France. Louis became blind after a childhood accident and when he was 15, he created the system we know today as Braille. Over the years Braille has been modified to make it easier to read and now it is used world wide. This amazing way of communication used amongst the blind and visually impaired, has enabled independence and accessibility for this community. World Braille day…
As 2018 draws to an end, it has made me reflect on the year that I have had. When I was diagnosed with Stargardts in 2017, for a good few months it honestly felt like someone had ended my life. I was lost, confused and scared for much of the rest of that year following my diagnosis and I was consumed with the feeling of ‘why me’. I was grateful when my little boy suggested that we do something to…
Last week was half term and my husband had booked some time off of work. We have a jobs list for the house as long as I care to admit, so we debated whether this time and money should be spent on that. It’s not that anything major needs doing, it could just do with re painting in most of the rooms and some of our furniture could do with being replaced. The thing is, the house doesn’t excite me…
Today is white cane day. A lot of people living with Stargardts can manage very well on a daily basis without a long cane. Of course, there are exceptions who need one, or a guide dog, as everyone’s vision loss is different. A lot of people with central vision loss do use a signal cane though, which is a short small cane that can be held and doesn’t touch the floor. This is to alert others around them that they…
