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Good eye clinic appointment

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Flower

Flower

Well-Known Member
Relationship to Diabetes
Type 1
I had a good eye clinic appointment today. We talked about the absence of retinal screening back when I was dealing with sight threatening retinopathy in the 1980's and the amazing change the annual retina screening programme has brought about identifying very early changes in the retina and providing a timely pathway of care /treatment. We also talked about the lack of treatments other than laser to deal with the aggressive retinopathy I had at a young age. There weren't any of the Anti VEGF injections which have helped to limit damage and protect sight just the necessary but destructive maximum number of laser burns I had on my retinas until I had no sight left in my left eye and only central vision in my right eye.

I went through the horrifying period of losing my sight away from my family living in London due to my job. Thankfully I attended a world renowned hospital and surgeon who did everything they could to save some sight for me. It was pre home internet /forums/Social media and I felt really isolated closed in my own head dealing with sight loss and have pretty much kept it under lock and key in my head although it is the first thing I think of when I wake up - have I still got some sight? It has been and continues to be a huge mental weight and worry and is the thing that scares me the most apart from the health and safety of my family.

I usually get pretty freaked out going to retina/contact lens/low vision clinics but today the person I saw got how devastating it is to deal and live with sight loss and when I got up to leave they said what a very positive person I was for the way I was dealing with it all along with my leg in a cast with Charcot foot. It actually brought tears to my eyes. I try to get on with life but I know I cover up the overwhelming fear I have and it was the first time anyone has commented on how it affects my life.

I just wanted to say what an amazing difference having a good clinic experience made to me today. Thank you NHS 🙂
 
Well done to them! You clearly are a positive person the way you deal with it and your Charcot foot, but it's so lovely that the NHS recognised that. So well done to them, and even more well done to you x
 
I’m so glad you had a positive experience, it makes such a difference. (And I assume there weren’t any lurking lampposts outside afterwards to ruin your day)
 
Flower said:
I managed to avoid walking in to any trees or lampposts that have previously got in my way in the hospital grounds!
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I hope you didn't apologise to the trees when you did walk into them🙂
As a young child it was missed that I had a fixed squint so couldn't see a yard in front of my face so when ever I walked into a tree I would say sorry to it :D
 
Flower said:
I had a good eye clinic appointment today. We talked about the absence of retinal screening back when I was dealing with sight threatening retinopathy in the 1980's and the amazing change the annual retina screening programme has brought about identifying very early changes in the retina and providing a timely pathway of care /treatment. We also talked about the lack of treatments other than laser to deal with the aggressive retinopathy I had at a young age. There weren't any of the Anti VEGF injections which have helped to limit damage and protect sight just the necessary but destructive maximum number of laser burns I had on my retinas until I had no sight left in my left eye and only central vision in my right eye.

I went through the horrifying period of losing my sight away from my family living in London due to my job. Thankfully I attended a world renowned hospital and surgeon who did everything they could to save some sight for me. It was pre home internet /forums/Social media and I felt really isolated closed in my own head dealing with sight loss and have pretty much kept it under lock and key in my head although it is the first thing I think of when I wake up - have I still got some sight? It has been and continues to be a huge mental weight and worry and is the thing that scares me the most apart from the health and safety of my family.

I usually get pretty freaked out going to retina/contact lens/low vision clinics but today the person I saw got how devastating it is to deal and live with sight loss and when I got up to leave they said what a very positive person I was for the way I was dealing with it all along with my leg in a cast with Charcot foot. It actually brought tears to my eyes. I try to get on with life but I know I cover up the overwhelming fear I have and it was the first time anyone has commented on how it affects my life.

I just wanted to say what an amazing difference having a good clinic experience made to me today. Thank you NHS 🙂
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Very pleased to read you had a good appointment. You are a very strong person and I am in awe of your positivity. Inspiring.
 
That's a very positive post . Sometimes all we want to hear is that someone gets what we are going through and that's enough. To have our experience validated.

I, for one, am very grateful to have been diagnosed in an era of retinal screening, MDI and the improvements in blood glucose monitoring.
 
Even though sight threatening retinopathy is an overwhelmingly frightening complication it was good to talk about how it had affected my life not just the mechanics of retinopathy and surgery & what might go wrong next. I usually come out of clinics thinking thank goodness that’s over but today my spirits were lifted by the kind words and understanding.
 
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I think you're a really inspiring woman @Flower . Your posts have certainly helped me since joining this forum and I think you are completely right - we should appreciate the advancement in science and what that means for diabetes. I for one am thankful to live in a country where those treatments are free too.

Really happy that you have had a good experience today. ☺
 
Pumper_Sue said:
I hope you didn't apologise to the trees when you did walk into them🙂
As a young child it was missed that I had a fixed squint so couldn't see a yard in front of my face so when ever I walked into a tree I would say sorry to it :D
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Err - I've always assumed that everyone says 'Sorry!' when they walk into inanimate objects. Don't they?
 
That’s good to hear @Flower , so glad they could see the patient and not just the condition x
 
So pleased to hear that someone acknowledged just how well you are doing @Flower.
Well done in avoiding the obstacles in the hospital grounds and staying in your feet.
 
Lovely appointment for you @Flower, your a true inspiration to the forum. xx
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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