I read a friend’s blog a couple of months ago in which he talked about becoming aware of having lost more sight recently (<http://andadapt.com&gt;) and having become aware of it after returning home from a holiday.  That’s the thing with our eye condition (retinitis pigmentosa; RP) as its progressive technically you are always losing some of your vision, its just that you are not usually aware of it on a daily basis.  I too became aware of how little sight I have left while on holiday recently – falling down the holiday house stairs, hitting your head off a shelf, smacking your face off a TV and having to use your various mobility rehabilitation skills to navigate new environments tends to bring such awareness to the fore!!

And that’s the other thing with my eye condition, as its progressive you are always adapting to your continued loss.  For example I now use e-books to read in the evenings as I see nothing in low levels of light and use photographs to see detail I can’t see in real time.  I’ve been so fortunate to experience good sight but I often wonder what its like to know for certain what you’ll see (or not see) tomorrow, the day after, in six months time, in six years time.

Possibly one of the most common questions that individuals with RP ask is “how long will my vision last?”  Sadly there’s no definitive answer to that question.  There are so many variations of RP (200 I think) caused by a wide range of faulty genes and so the rate of sight loss can be very different between individuals and within their own affected families.  It was a very sobering realisation indeed for me the day I recognised my RP is robbing me of my sight faster than my Mum lost her’s (I’m approx 20 years ahead of her vision loss).  

Each occasion I again appreciate how precious my remaining sight is, I also come to realise what’s of importance to me and the experiences I want to have and treasure before its too late.