Sight loss fear and dread

[Flower]

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. 🙂

 

[Amigo]

Your situation overwhelms me with sadness and concern for you Flower and I so wish there was something I could do to help.

All I can urge you to do is not give into the fear though even that sounds a bit lame. I saw my mum go through this and the fear and distress was off the scale. It affected her well being massively too so I can empathise with how this feels.

I'm keeping everything crossed that this surgery is successful for you and preserves the sight in your good eye.

Sending huge hugs and best wishes, Amigo x

 

[everydayupsanddowns]

Really sorry to read this Flower. You work so hard on your management, and have been facing these difficulties for such a long time.

Really hope the operation is successful and that your remaining sight is retained and improved.

((((((Hugs))))))

 

[grovesy]

Sorry to hear this.

 

[Stitch147]

Sorry to hear this Flower. I really hope that your upcoming operation goes well for you. Sending you love, hugs and warm wishes. Wish there was something I could do to help. X

 

[Lindarose]

As others have said I wish there was something we could do to help Flower. . Apart from send best wishes and hope that all goes well with your op. You are always so inspiring with your positive posts despite what's going on. You truly deserve some good luck xx

 

[Flower]

Thank you all so much 🙂

Being able to write down a bit of my full up worried head helps so much to try and be rational about what I need to do. For now I'll wait for the pre op appointment and go hunting for my mojo wherever I left it!

 

[Greyhound Gal]

I can't even begin to imagine what it must be like Flower. All I can do with every fibre of my being is to wish you well and that all goes well with your op xx

 

[Bubbsie]

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. 🙂

Flower there's nothing 'downbeat' about your thread...it's such an honest...thought provoking account of the 'fight' to save your sight...it made me think how fortunate I have been with the treatment I've had from the NHS...despite the complaints I and others raise on the forum...I never thought about the eye screening programme...just took it for granted..it was there...not something I gave a moment's consideration...the assumption on my part was it always had been...(how naïve is that?)...it never occurred to me it 'hadn't existed back in the day'...like the other members... I wish there was something I could do to ease that dread & fear for you...in the absence of that...sending my support & sincere hope that the treatment is successful in preserving your sight...yes...despite some negative experiences...on the whole I have had professional...caring...kind treatment from many of the staff I have dealt with...made me think I should concentrate on the positive aspects of my care...there has been plenty of that...I admire your honesty...courage & stoicism in the face of all that you've shared with us...will be thinking of you in the coming weeks...very best wishes...Barbara

 

[trophywench]

Oh, Flower. Wish I had it (your mojo) cos I'd be more than willing to bike courier it to you pdq.

As I haven't - all I can do is send you more {{{Hugs}}}

I think our sight is something we usually take so much for granted - until ..... and I know I'd be terrified were I you. Have you got someone you can just have a bloody good cry, to? I do hope so.

 

[trophywench]

Other than sight tests (I have astigmatism in one eye) it wasn't until the late 1980, so a good 15 years past diagnosis - that anyone in the diabetes clinic ever even suggested they might want to look at my eyes.

When I moved here in 1998, because Coventry had a specific eye clinic (the Paybody) which was attached to the old Cov and Warwick hospital near the city centre, and though most hospital departments had by then moved to the newer out of town site at Walsgrave, the Metabolic Unit, which dealt with diabetes was still at the old C&W, so it was just a matter of walking down the corridor a bit further on the day they wanted to check your eyes. There for the first time in my life ever - I met an ophthalmologist, who examined my eyes through a 'slit lamp' spectrometer. Gosh - how modern was that!

I don't know when the photography started around these parts, must have been the noughties I suppose? - so I reckon I'd already had diabetes for over 30 years before such a thing was rolled out to the likes of you or I.

Luckily - so far I haven't had Flower's probs - but that's all it is in my book - sheer good fortune.

We really have never had it so good as we both have now - and yet we both still moan like hell from time to time!

(Wouldn't it be a strange world to live in though if everyone was happy about everything?)

 

[Matt Cycle]

Sorry to hear this Flower and sending you my best wishes and hopes for a positive outcome with your remaining sight.

Completely agree with your praise of the NHS staff as I thank them for looking after me and keeping me alive.

 

[Robin]

Sending you multiple hugs, and best wishes for the very best outcome possible.

 

[stephknits]

Wishing you all the luck. Must feel like you are stuck between a rock and a hard place. Reminds me not to take the excellent care I have received for granted

 

[khskel]

Can't do anything else other than keep my fingers crossed for you.

 

[Flower]

Thank you so much everyone for your kind words of support, they really do help me. 🙂

Hoping for the best is all I can do, surely that has to work occasionally!

 

[Ditto]

I'm so so so sorry, this is my biggest fear too, I can't even imagine what you're going through. You are being very brave.

 

[Barbara W]

So sorry to hear this Flower. Sending you big ((((hugs)))).

 

[Northerner]

I don't have words to express how I feel about this @Flower The DF has been rattling off the walls and will continue to do so until she understands what an awful thing this diabetes has subjected you to I hope with all my heart that things go well with the op when it comes along {{{{{HUGS}}}}}

 

[New-journey]

My heart goes out to you, your post is so full of courage and generosity, sending million hugs and support from Spain. It says so much about you that you posted on my thread with all you are facing, you are so inspiring and wish you a successful operation.