How to cope with this ? !

[Hellocalifornia]

hoping someone will have some advice or if anyone has experienced similar, how do you cope ?

i’ve recently had a few scares with me eyes. I’ve had closed angle glaucoma attacks . Part of my eye apparently was stuck/blocked and he told me it was like inflating a balloon on the front of my eye. I am managed by the hospital now for this but it has happened more than once and I was told it will possibly happen again at some point . I know when it’s happening (I can tell with the symptoms) and I know to call the department or alternatively go to the ED/a&e. But even though I know what to do, I’m extremely frightened now about it happening again and losing vision from it . I lost a tiny little bit of my sight already (but only in one eye and it’s very slight- the other eye makes up for it so I wouldn’t even notice it had they not told me) but I was told I was extremely lucky not to have seriously lost vision .

Does anyone have any advice on how to live life alongside the worry of it happening again ? If it does- and it likely will- I know what to do but I’m worried I can’t get through, or I don’t get taken seriously especially if it’s out of hours and I have to go to ED/a&e . I’ve never not been taken seriously before so this is a non-issue really, but when it’s my eyesight at risk I suppose every possibility is more frightening. Also, what if it happens on holidays ? Or when I’m abroad ? Or not close to a hospital ?

I know I have to live my life and can’t spend it worrying about this . But I’m frightened of it happening again. Even if it does happen again, it’s likely my sight will be fine if I’m treated promptly. But the tiny chance I could lose some of my sight is terrifying .

does anyone have any advice or experience on how to live alongside this hanging over me ? Many thanks all.

In the UK your medical records are all linked so any hospital would be able to see you have an eye problem, treatment you’ve had etc and they always take glaucoma very seriously.
Larger hospitals often have a separate eye A&E, so if possible go there.
If it happens abroad I don’t know , it would depend which country you’re in, how isolated etc..
https://glaucoma.uk/ probably have lots of answers and support.

Haven't they done or scheduled surgery to prevent further attacks?

Yes they have but I’ve still had a few attacks. I think they were considering something more invasive but I don’t fully understand the details of it. They gave me some eye drops to use everyday but apparently that is to try and keep everything unblocked and but if I get closed glaucoma again that won’t help and I need to go to the hospital

That’s very helpful, thank you . That’s a relief that other hospitals would be aware and would deal with it quickly !

Bump

Apologies- bumping again.

Hello, just dropping to say that I sympathise and even though I don’t have glaucoma, I know how it feels to worry about your vision. I see lots of flashing lights and and always worried that this time it will be a detached retina. I also have glaucoma in the family so am expecting to get it myself as I grow older. I am also generally a bit of a pessimist, since the pandemic especially, and part of me is just waiting for the next disaster to strike.

How to cope… I wish I had some proper advice to give. I guess my mindset generally is that rather than hide away, get out there because “tomorrow isn’t guaranteed” “carpe diem” “a bird in the hand”. I tend not to delay my plans or plan too far into the future and rather than think “what if I go blind when I’m travelling” I’d be more likely to think “I must go travelling sooner rather than later, I’ll regret not going if I go blind one day”.

Not sure that is helpful, I guess what I’m suggesting is that trying to tweak your inner narrative might help you to feel more empowered to do the things you want to do and live in the moment (even if the fear doesn’t go away).