coping

[ChrisNorthEast]

does anyone else on here think glaucoma feels like a death sentence? How do you cope?

do many ppl mange to stop vision loss in its tracks?

[muddledme]

Hello ChrisNorthEast,

Yes, it does take a while to come to terms with Glaucoma but I have found that it helps a lot to find out as much information as possible, so that is easier to understand ,accept and deal with the problem.

My Mum had glaucoma for at least 50 years yet lived happily into her nineties following 2 successful Trabs.

Sometimes the Eye Liason Officer at your opthalmolgy clinic can be very helpful . They are often called ELO 's.

I suppose it is similar to other diseases except this one does not cause death and rarely causes blindness.

At 7pm tonight there is a Q and A session about Glaucoma.

It may be possible to register before 7pm otherwise it will be on the Glaucoma UK website in a couple of weeks,

Just look up Glaucoma UK digital support groups. Lots of past webinars are available .

Best wishes.

[ChrisNorthEast in reply to muddledme]

Thank you. You will never know how reassuring that is to read

[ChrisNorthEast in reply to muddledme]

How do I register for the q and a

[ChrisNorthEast in reply to muddledme]

Just found link now thanks

[ChrisNorthEast in reply to muddledme]

The q and a was good I thought

[Hidden]

I think a lot of people panic and think they are going to lose their vision when first diagnosed . I was pretty ignorant about glaucoma initially ,all I really knew was that it could make you go blind.!!! I cried for weeks afterwards,I would be walking my dog with tears pouring down my face . I felt better once I took matters into my own hands and made an appointment to see a private glaucoma specialist who explained the disease to me and trusting and having faith in him helped my fears . It all takes time as muddledme says to come to terms with having glaucoma.

I know 5 other people in my village who all have glaucoma , 2 are in their late 80s and one in their 90s and none of them have completely lost their vision. Two of them don't drive anymore but did up until a few years ago. The one who has lost most vision also has macular degeneration to contend with.

I have lost no further vision since diagnosed and initially being put on eye drops. All my vision loss was prior to being diagnosed, so for the moment it has been stopped in its tracks.

For me initially it probably did feel like a death sentence but that seems like a lifetime ago ,although only 4 years. I now honestly don't remotely feel like that but I didn't get to this stage overnight .

Someone on here wrote " we all get given something to deal with " and mine is glaucoma ,I have friends with MS and one with prostate cancer, so I feel pretty lucky.

You are at the beginning and it honestly does get easier .

[ChrisNorthEast in reply to Hidden]

Thank you so much that means a lot

[Eahldt]

I can tell you’re in a dark place at the moment. Try and focus on how treatments are getting better all the time. Also, glaucoma generally progresses slowly so your brain has time to adapt to changes. As long as you keep using prescribed drops and get regular monitoring it should become something you can learn to live with. As Witchie346 said, as we get older, there’s something out there to get all of us and this is ours. I also have friends with cancer and other conditions which they’re managing to live with. Thinking of you.

[Redshoes15]

My reaction was very similar to Witchie’s when I was first diagnosed - couldn’t stop crying and convinced I would go blind. I hope it helps you to know that I was diagnosed at age 55 and I am now 72, so the various treatments I have had have stopped my glaucoma from getting any worse. You are not alone as so many people suffer from it and nowadays there is so much that can be done. So don’t despair, yours has been caught early and you are in good hands.

[ChrisNorthEast in reply to Redshoes15]

Thank you both so much xx

[Efabear]

Hi Chris. I like this as similar to a grieving process in that I've lived through a range of emotions since I was diagnosed in Nov. I did reason I'd face it positively but after a roller coaster ride, mainly due to the fact I was diagnosed late, have allergies to drops and the fact the NHS is struggling to cope with demands, I realise that's all part of a process of adapting to life with a potentially life altering condition. As humans we are programmed to think the worst!? It took a while to be ready to arm myself with information about the disease but would say that being informed is the most reassuring thing for me. I watched most of the Glaucoma UK webinars and would recommend them. The over riding message is positive. I'd particularly recommend the one from the Crabb lab(something about modelling and Kate moss in the title) as they present a scatter chart which demonstrates how rare it is nowadays to go blind due to glaucoma. The other take home message from other sessions is that's there always something more they can do to treat the condition. So I'd say your fear/anxiety is natural but its only part of the process of getting the hang of not living with and not letting glaucoma rule our lives.

[mrswaffle]

I felt exactly the same when I was first diagnosed, which was thanks to a vigilant optometrist. It was the first time I had been to that one and he gave me the impression the condition must have been present for some time. This was upsetting as I had been having regular checkups at opticians since my late 40s- I was 57 when it was diagnosed. I’m 72 now and considerably more philosophical these days about life, the universe and everything! It took a long time, though and there have been bumps in the road. (Like the time just before lockdown, when Boots couldn’t supply Azarga and were unhelpful and unsympathetic). A pat on the back for Glaucoma UK and the members of this forum, who are very helpful, sympathetic and supportive. You’re among friends here!

[Sufitzy]

You have low times But I find it helpful to remind myself what I can see in the moment when I feel low . It reminds me that I am living well and seeing ok and with treatment it can stay that way for the rest of my life . But you have to not deny the down times and reach out . Here for you x

[ChrisNorthEast in reply to Sufitzy]

Thank you both. Have you both managed it without further vision loss?

[Vich81]

Hi Chris. It’s only a death sentence if you let it take over and focus on it every day. It must be new to you but I promise you will learn to live with it. It’s still your life, you just have to take extra care now. I am 40 and was diagnosed at 23. I’ve had my dark moments and don’t get me wrong, when I even contemplate the future and think I might be blind, I feel like I am being choked! Just do what you have been advised to do with drops and make sure you never forget to put them in. Also, always attend your appointments! It will get better! And you can do it. I always think everyone in life has ‘their thing’ they have to cope/deal with and this is yours. Talk to someone you trust or use the helpline. Even if things take a bad turn, there’s usually something that can be done. Take care

[ChrisNorthEast in reply to Vich81]

Thank you. Have you lost any sight?

[Vich81 in reply to ChrisNorthEast]

Hiya. One of these days I will get round to doing my Bio! Well I have yes but it’s been the same damage since I was pregnant 16 years ago. A Gp told me bad information but that’s another story. I’ve not had that much more glaucoma damage since. I’ve had a trab around 12 years ago, countless laser and because I had a blood clot (Central Retinal Vein Occlusion) out of the blue 6 years ago in my left eye, I’ve had to have near on 40 injections in that eye! I do worry and I am a natural worrier but I only get really worried when something actually happens, I’m too busy with work and a teen to concern myself day to day. I have a strict regime and protect my eyes at all cost though.

[mrswaffle in reply to ChrisNorthEast]

Sorry, Chris, just seen your question! I believe I have lost a little in the upper quadrant of my left eye; I only know this because it shows up on the visual field test . I am still driving- have my next DVLA test next year. Cheers.

[ChrisNorthEast in reply to Vich81]

Hi V have you had surgery ?

[Vich81 in reply to ChrisNorthEast]

I’ve had a trabeculectomy 12 years ago and a cataracts op around five years ago.

[Wales99]

Bless you. I felt like this at first. Two years on & I still have moments. I think once you get it under control & you have regular appointments & realise it’s stabilised then you start to relax a bit. Everyone is different & everyone deals with it differently & there is definitely no right or wrong way to deal with it. I just try & think to myself that what has happened has happened and there ain’t anything I can do now. At least they are on it now & they will do everything to stop it progressing. Do have a look on Glaucoma UK website as they have a lot of info on there. They have a recording of a webinar for the newly diagnosed which I found really helpful. Take care & you will always find support on here. 😊

[ChrisNorthEast in reply to Wales99]

Thank you my friend

[Littletreasures]

ChrisNorthEast I was diagnosed 5 weeks ago. I haven’t really thought much about the diagnosis and it hadn’t bothered me until I read your post. Now I’m wondering if I should be worrying 😃but my ophthalmologist who diagnosed it said “it’s unlikely to be a problem in your lifetime” and that I can drive and don’t have to report it to any insurances or anything. So my take on it is that I just put eye drops in at bedtime for the rest of my days and that’s about it. I suspect I’m being naïve but I don’t really want to think too much about it all because I can’t change it.

[Lucy222]

Hi Chris I know how you feel. Three weeks ago I was given drops to lower the pressure in my eyes and when I was walking away from the Clinic all I could think of was that I am going to go blind. It is constantly on my mind and I don't know how I will ever come to terms with it. But on the positive side my Husband was diagnosed with Glaucoma 4 years about he was given drops that didn't lower the pressure so they inserted a type of stent in his eye and his eyesight is fine. He went for a checkup last month and everything was great. .