Glaucoma / uveitis/cornea damage

[LondonStadium]

Hi all Was just asking has anyone had anxiety problems due to blurred vision etc , I've only just started to not want to go places I normally would have gone I.e football , leisure , running even shopping , any feedback would be very much appreciated

Thanks

[Johnneyh]

Hi you sound just like me i used to be up and away every day ive now completely lost all confidence in my self blurred vision day after day im at rock bottom

[LondonStadium in reply to Johnneyh]

Hi JohnneyhThanks for replying , I know exactly what you mean and I think sometimes we take things for granted like our sight and when it gets taken away all the things we did even everyday things become almost impossible but I hope you start to try to come to terms with blurred vision I am trying and always here if you want to message .

[Beecalmed]

Hi! Londonstadium and Johnneyh!

Really sorry to hear the impact this is having on your lives!

Do you mind me asking do you know what specifically is causing your blurriness? Is it thought to be a combination of all your eye conditions?

[dillydream in reply to Beecalmed]

Hi londonstadium, I think you’ve taken the first step by joining this forum. I have glaucoma but also a daughter in late forties with slowly deteriorating sight. Someone described it as constantly grieving over what you have lost. She became anxious and isolated although she’s no shrinking violet. Counselling from nhs, private or charities helped her to be open about what was wrong and become assertive in asking for ( or demanding!)support. There’s plenty out there. Your sight does not need to be that bad before you ask for help, if it’s stopping you going out. First step is the council who will have a specialist with local knowledge. Your London Stadium may have volunteers to give you a hand. Daughter now runs half marathons, park runs with a guide runner. With jobs you have to stress what you can do but with benefits you swallow your pride and stress what you can’t! I know it’s all easier said than done, especially for a man, even these days. But I expect you’ll get a lot of support from this forum. Best of luck.

[LondonStadium in reply to dillydream]

Many thanks dillydream Thank you and your right this forum is brilliant and it's so good reading about how other people are coping with their sight loss and other problems, Your reply was really uplifting tbh and did make me smile especially about your daughter being no shrinking violet and good to hear she isn't, I think you need to have that mindset especially with health problems , your daughter is doing so well with her running especially doing the park runs and half marathons and they do say exercise does help , I did the London Marathon this year and loved it even if I had to be carefull , I've contacted the rnib and sort of started the ball rolling with work so fingers crossed I can start to adjust to life just a different life , how are you coping with your glaucoma you didn't say

Thanks again and good luck to you and your daughter too

[dillydream in reply to LondonStadium]

Thank you for your reply, I was worried I’d made it sound too easy. It’s not. I used to get a bit annoyed when we’ll meaning people told me about the achievements of others when she was struggling. We’re all different. Wow, well done on the Marathon.

I also meant to include johnneyh in my reply. Apologies to you.

[LondonStadium in reply to dillydream]

Your very welcome I can imagine it was very hard tbh , nothing worse than hearing how others are doing well it must have been very annoying I know I would have been and like you say everyone is different but you must be so proud of your daughter and how she is getting on with her life and achieving loads , Thank you it was a fantastic day seeing everyone running for so many good causes .

[LondonStadium in reply to Beecalmed]

Hi Beecalmed Thanks for replying , course I don't mind you asking I've has Glaucoma and Uveitis and over the years had numerous procedures which has resulted in trauma which has caused damage to my cornea , I was due to have a cornea transplant very soon but after seeing my consultant he said its took risky and more than likely wouldn't work so basically I just have to get on with having blurred vision , it's just been a bit of a shock tbh

[Beecalmed]

Sorry for the delay in replying. Sorry too to hear about your eye history. It sounds like you had some hope until that hope was removed by your consultants decision not to operate. With loss of hope has come an understandable lack of a wish to engage and go out. Do you think you might be suffering from mild depression? It would be completely understandable if you were.

I think Dillydream is right, you need to reach out to organisations for sight loss for help and find some local help groups with others in a similar situation you can talk too. You also might need some suggestions on tools physical and mental to adapt to your new situation. An occupational therapist might be able to help you adapt to your changing situation. Be persistent and annoying if necessary, but do get some support! 👍🏻

GPs are not easy to access these days but I wonder if contacting your GP who maybe able to signpost local or national organisations who might help you with your deteriorating vision, or even a short course of counselling just to be able to talk to someone about your situation and feelings might help.

You have made the first step by contacting this forum. Please reach out and get support through this. Don’t retreat and shut down. You do need time to grieve your sight loss but I’m sure there is support out there you just need to be strong enough to take the first step and find it.

Let us know how you get on. For some of us already with partial vision loss your experience on your journey may be useful to us in the future when, or if, we’re in the same boat and our vision loss becomes more debilitating. Good luck!

[LondonStadium in reply to Beecalmed]

Hi Beecalmed That's ok and thank you so much for replying ,

I did think that I might have mild depression because obviously after being told that a transplant is off the table now I probably didn't take in all what the consultant said until I got home and all of sudden it registered , I'm normally upbeat and always doing something even after work depending on shifts, just need to try and stay positive .

I have taken the first step and been in touch with the RNIB and spoke to a lovely lady recently about going back to work and the help I can get , she has sent me a load of information about help I can receive and changes that can be made when I do go back and perhaps I can get transferred to a hospital closer to me , they are things I need to discuss with my Manager and H.R

My G.P isn't really a option as I don't think she fully understands the severity of what is happening and is very busy as you can imagine , I think once I have been to my next Moorfields appointment it will be a lot clearer where I am because I need to ask quite a few questions , Main one is why suddenly a transplant was withdrawn then with answers I can move forward especially workwise .

This forum has been a Godsend tbh especially reading how many people have sight loss and sight problems it really helps talking about it and getting peoples opinions and advice .

Thank you so much for replying it really does help like you said we are all in the same boat , I will let you know how things progress whatever the outcome

Thanks again and take care

[Beecalmed in reply to LondonStadium]

👍🏻 It sounds like you’re on the right track. So glad to hear you’re fighting back!

Yes, information is power and knowing more about why the consultant made the decision will help you compute and move forward.

Anytime you need a friendly ear to listen though we are here. We’re not all about bad news either; we like good news too. If you have a small win let us know and we can all celebrate with you! 🙂

[LondonStadium in reply to Beecalmed]

Thank you for your positive reply and talking to people who have the same or similar experiences with vision loss is very uplifting especially when youbhear how they are moving forward and getting on with life , I know you all are and I'm so glad I found this forum wish I had done this earlier , reading some of the posts and how people react when they get a reply to their problem makes me happy and hopefully I will have good news soon which obviously I will post on here .Thanks again Beecalmed 🙂