We all suffer loss at some time in our lives.
The feeling of loss comes from losing something precious.
A loved one, a loved possession or perhaps moving from a beloved place.
It can be a loss of a limb, of our hearing and our independence perhaps.
In the case of Aged-related Macular Degeneration, it is a gradual loss, but there comes the point where you have to accept that it is never going to get better.
(Some people like to claim that it can get better because there are treatments available outside of the NHS in the United Kingdom, but I have looked into that, and it depends on what type of AMD you have.)
I want to share with you my journey with this problem because I can see that there is such a lack of information about what people are actually experience. I did not know about the darkness, distortion, light sensitivity and other problems. I just thought that it was a matter of losing central vision.
Now I want others to know what to expect or what their relatives or friends are experiencing. I do understand that there are no two cases alike. Each person’s experience will be as different as each of the millions of others who have it.
Yesterday after suffering from dry AMD for two years, and then a further nine months with WET MD, I finally reached the point where I had to face up to the fact that it is never going to be better than it is now.
I am currently waiting for the point where my eyesight has degenerated to the NICE guidelines, so that I can start having injections to slightly improve the sight or at least arrest the deterioration. (Injections cost the NHS £1000 each.)
In the last two weeks, I have been experiencing distortion, and I thought that my eyes had reached the necessary point. So I was surprised when the consultant said that there was no difference on the scan from four weeks ago.
When I asked why I have the distortion suddenly, he replied that he was surprised that I had not had it before.
He also explained that I only have it in my GOOD EYE!
It is weird how I have struggled seeing out of my bad eye, all of my life, but now the good eye is so bad that the bad one sees clearer!
He also explained that the injections might slightly improve the sight again, and they will most likely maintain the sight that I have. But it is worth repeating that the sight has to get worse before it gets better.
This is where the conundrum comes in. I suddenly realised that the sight I have now would never be any better because they will not give me the jabs until it gets worse. Therefore it is never going to be any better than it is now.
Does that make sense? My emotions went into a dip yesterday when I realised that deep down I was hoping that the injections were going to make things better.
I hope that this blog makes sense to you and you can understand what I am trying to say.
I am firing this off early in the morning before a busy, but enjoyable day out in Falmouth in Cornwall with some friends. I am so grateful for that.
A very kind liaison lady came to see me at the Eye Infirmary yesterday, and she gave me some anti-glare goggles to place over my glasses, for the light sensitivity. She was there for me and listened and reassured me that I would never completely lose my sight unless anything else goes wrong other than the MD.
So I have a lot to be grateful for. But I wanted to share this to my groups on Facebook, and others who may find it when looking up AMD on the internet. Just to help people understand this condition that bit better.
I am also grateful for the lovely people in my local MD group in Plymouth, for their company and understanding. When we eat out once a month, we can sit and laugh and feel somewhat normal, even with the enlarged print menus that the restaurants provide!