Sight loss fear and dread

[Barb]

Sorry for the downbeat post.

I've dealt with the harrowing challenges of sight threatening proliferative retinopathy for about 25 years now. I go through phases where things remain quiet and when things go seriously wrong and all the fear I try to keep a lid on smacks me in the face again. Sight loss is all consuming. I can't look away or distract myself, every waking moment is spent trying to see round the flickering damage in front of me.

I've been to the eye hospital twice in the past few days to sort out the surgery I need to keep the bit of remaining retina as intact as possible plus to put a new lens in as my lens is ruined.

I lost the sight in my left eye years ago and have not seen through that eye since followed by a period of about 12 months with no sight in either eye. This has had more of an impact on my well being than I can begin to acknowledge It's only since joining this forum that I have been able to write anything down about that period in my life. I can't cope with the possibility of being locked in my head again with no sight .I'm having an operation in a couple of months under general anaesthetic to deal with the issues in my seeing eye but it comes with big potential risks to my precious remaining sight. Doing nothing/running away is sadly not an option else I'd be packed and on my way by now. I am feeling sick with dread and fear at present,

Complications once they get their grip do not seem able to lie dormant and despite having an HbA1c in my boots and keeping the best control possible they keep on doing their very worst.

On a positive note I spoke to a lovely person from the county retinal screening programme and we discussed the positive impact organised screening had brought about on picking up early changes in the retinas. The national retina screening programme didn't exist back in the day and by the time I had issues, I already had proliferative sight threatening retinopathy. I praise the fantastic work done by the NHS and their amazing, dedicated staff who work to protect our precious vision from dire consequences. I'd give them all a pay rise for their outstanding professionalism, care and kindness. 🙂

Sorry for the downbeat post.

I've dealt with the harrowing challenges of sight threatening proliferative retinopathy for about 25 years now. I go through phases where things remain quiet and when things go seriously wrong and all the fear I try to keep a lid on smacks me in the face again. Sight loss is all consuming. I can't look away or distract myself, every waking moment is spent trying to see round the flickering damage in front of me.

I've been to the eye hospital twice in the past few days to sort out the surgery I need to keep the bit of remaining retina as intact as possible plus to put a new lens in as my lens is ruined.

I lost the sight in my left eye years ago and have not seen through that eye since followed by a period of about 12 months with no sight in either eye. This has had more of an impact on my well being than I can begin to acknowledge It's only since joining this forum that I have been able to write anything down about that period in my life. I can't cope with the possibility of being locked in my head again with no sight .I'm having an operation in a couple of months under general anaesthetic to deal with the issues in my seeing eye but it comes with big potential risks to my precious remaining sight. Doing nothing/running away is sadly not an option else I'd be packed and on my way by now. I am feeling sick with dread and fear at present,

Complications once they get their grip do not seem able to lie dormant and despite having an HbA1c in my boots and keeping the best control possible they keep on doing their very worst.

On a positive note I spoke to a lovely person from the county retinal screening programme and we discussed the positive impact organised screening had brought about on picking up early changes in the retinas. The national retina screening programme didn't exist back in the day and by the time I had issues, I already had proliferative sight threatening retinopathy. I praise the fantastic work done by the NHS and their amazing, dedicated staff who work to protect our precious vision from dire consequences. I'd give them all a pay rise for their outstanding professionalism, care and kindness. 🙂

 

[Barb]

So sorry to hear this and wishing you a good outcome after surgery.

 

[LorraineP]

Flower, I want to send you a big hug too. I know that awful fear of losing your eyesight permanently as I also had proliferative retinopathy with a number of bleeds. From what I've read you seem to have a good medical team you can trust. That's so important with a condition like this. I'm sure they will do everything in their power to preserve your eyesight and I'll be rooting for you when you have your operation xx

 

[Flutterby]

Sending you lots of love and prayers, Flower. I honestly don't know how you manage to remain so cheery so much of the time. I wish you all the very best with the op. It is a horrible situation to be in and although I know that you don't have much choice, I still think you are very brave xx

 

[mikeyB]

Just remember, Flower, no surgeon has ever operated on anyone to make things worse, or recommended treatment that he or she was not competent to do. With that in mind, try not to get consumed with worry. As much.

Big hug. xxx

 

[jusme]

Thinking of you Flower and knowing how brave you are with all the trials and tribulations you have been through you have always made me think if Flower can face the problem in front of her then so can I. Wishing you calmer days ahead.

jusme