UK Keratoconus Self-Help and Support Association

Sorry for having another post but how do people deal with KC and other eye problems? i thought KC was bad but found out i had a TIA (Mini Stroke) in my good eye and now have (i think) a permanent black spot in my vision - its really annoying

Kieran so sorry you've had a TIA, the black spot must be really annoying, have you asked your ophthalmologist directly about this, whether this is temporary?

I struggle a lot with my KC with anxiety especially when there are problems and all out panic if it's the 'good' eye.
I talk with people I trust who understand that I'm not someone to do 'glass 1/2 full' with, that (for me) the best response is to acknowledge the scale of my distress without geeing up, dismissal, judgement or comparison to others.
To let me look at worst case scenario's, because in order to cope I find I need to look at the worst first.
We're all different in how we cope, there's no correct way, and sometimes we need to tell others how to be supportive.
So sometimes I spiral, then I reach a point of shelving it, so the best others can do is to hold hands in the dark with me when I'm spiralling.

The RNIB do offer short term counselling, a fixed number of sessions, that can be useful.
Some eye hospitals have nurse counsellors. I found at my hospital they wouldn't see anyone with previous mental health issues though.

thanks for the reply - its cause a black spec with like see through cobwebs - the eye clinic didnt say it was permanent but dont go back for another week to see them. The TIA clinic doctor said its more than likely permanent - its not affecting my vision just really annoying and constantly seeing it and thinking about it

I'm sorry it's permanent, I would find it annoying too, I wonder if it would help to meet with someone else who has this too

Kieran, I too think the RNIB might be a good option for you https://www.rnib.org.uk/services-we-offer-advice-and-support-services/sight-loss-counselling-team.

Graham

Thank you

I used that service from RNIB when I had my sighted registered as Severely Sight Impaired / Blind. It was of huge benefit.

after all had some good news that the NHS jumped the gun and have misdiagnosed me - i didnt have any TIA or Stroke. I had a small blockage which the eye hospital believe is getting better and will go in the next month hopefully - so happy thanks for all your posts

That’s great news Kieran! Fingers crossed it all goes well

kieran19685 wrote:after all had some good news that the NHS jumped the gun and have misdiagnosed me - i didn't have any TIA or Stroke. I had a small blockage which the eye hospital believe is getting better and will go in the next month hopefully - so happy thanks for all your posts

Really pleased for you. Give it a bit of time and the vision can be re-assessed too.