Life with Glaucoma !

[Noelhoney]

I have glaucoma and eye damage and pain and I have to say it's reduced my quality of life considerably, especially as both my mother and father never had glaucoma I'm unsure why I ended up with it ! But they both enjoyed good quality of life into old age ! Myself at just 64 I have had to give up my work and hobbies, Been advised I can't fly long haul to see my family anymore...My diet is strict, eye drops 5 times a day, sleeping partially upright, staying out of bright light, reduced driving ability !

How do you all cope with this strict life ! For me glaucoma has wrecked my once amazing life.....and why do some people seem to get it while others never do ? Wish I could enjoy a normal life like my parents have

[nat10]

I also wonder why some of us get glaucoma and some don’t . My mum does have it and she suspected that her dad also had it but not diagnosed, both my siblings have no problems, so just me. I have adapted now to not being able to do all the things I once did,

[Noelhoney in reply to nat10]

Thanks for the reply....for me it's been very difficult, I was a professional musician, sadly that's now ended, I also dived as a hobby...that's gone...I don't have much left really apart from my cats and the radio.

[MoonClare in reply to Noelhoney]

Can't offer advice as very new to this subject but I can offer lots of empathy, travel and crafts are a huge part of my life (cats too). I hope some of the things you love to do can be salvaged.

[Hidden in reply to MoonClare]

My cat is blind in one eye and going blind in the other I find him a great source of comfort

He just gets on and doesn't stress about it which I find comforting

There is support out there the rnib have some good advice aswell

[Jennymary]

I've lived with it all my life, I recently posted about my family history, never stopped me doing anything until 3 yrs ago when I lost the vision in my left eye and was subsequently registered blind. Which has totally changed my life and destroyed a friendship with someone I've known since my school days but I can no longer class her as a friend due to her attitude towards me

[Noelhoney in reply to Jennymary]

Oh I am sorry to hear that, I've experienced similar recently, people seem to react differently once they are faced with something they can't handle...don't worry you have lots of friends on here.. !

[Hidden]

Hi no honey. How long have you had glaucoma how old were you when you were diagnosed. I was diagnosed in December and told they caught my it early but with all I read on here it doesn’t seem promising. I’m speedy for the way things are with you. It’s scary because some people manage all the way through their lives with it and others it doesn’t I was wondering if that’s because it was caught in advance stages

[Noelhoney in reply to Hidden]

Diagnosed at 59, and had laser treatment in the uk just before moving to Spain, I was not given any more information after the treatment or eye drop requirements so moving to Spain I carried on working, I had new glasses from the uk and my vision was fine until one night just before bed last year I decided to do some sit ups...this caused pressure to build up and damaged my eye in my sleep, I had to wait 7 hours before being seen at the hospital at which point they diagnosed advanced glaucoma...my life changed overnight, my life now just revolves around my eyes...I believe about 15% of glaucoma patients still lose vision even with treatments.

[Hidden in reply to Noelhoney]

I’m so sorry to hear that so on your diagnosis you were not told it was advanced. Have you lost lots of vision Noel. Are you able to drive. Do you think the sit ups made it worse x

[Noelhoney in reply to Hidden]

Hi Julie...yes definitely the sit ups...my vision the day before was fine...I now have horrible centre damage in my left eye that is hard to explain but it looks like a ring of blue sparkles in the centre, I cannot read text with my left eye, also my left eye doesn't see colour correct anymore, it's tinged with grey, my right eye has become a bit blurred too..it is a daily slog, especially in the morning when I open my eyes !

[Hidden in reply to Noelhoney]

Why were you not given any follow ups is that because you went to Spain. I’m hoping for another appointment in March at the hospital if not I go to the optician to have pressure checked My hospital appointment is in March but havnt heard anything yet cause of Covid. But was promised 3 month appointment so that is in March I’m going to call tomorrow. How is health care in Spain x

[Noelhoney in reply to Hidden]

On reflection I should have carried on with treatment in Spain but it took quite a while to sort out health care and by that time I'd forgotten all about my eyes, and as I'd had the laser in the uk just before leaving and with my little knowledge about glaucoma I thought my problem was sorted after the laser treatment and my vision was fine ! I realise now the seriousness of the condition but hey hindsight is a wonderful thing...I'm now paying the price...however I now have good healthcare here but sadly too late !

[Hidden in reply to Noelhoney]

Oh bless you Noel. Sending you Hugs. Keep in touch on here Always willing to chat xx

[Noelhoney in reply to Hidden]

Thank you Julie..nice to have your support...we're in the same boat together x

[Hidden in reply to Hidden]

Hi there I'm hoping for march appointment too

My case is. Simula to yours and chatting on here at least makes it a bit better to cope

Hope you get the appointment

[Vich81]

Hello. It’s such a shame with this horrid disease that by us not realising how serious it is in the first instance, we make it worse for ourselves in the longer term. Myself included. I’m sorry you are having a hard time. When I feel down about the whole situation, I focus on what I can actually see and not what used to be. We would end up in a dark place if all we thought about was the future. Feel lucky you had many wonderful years with doing what you wanted to do without all this rigmarole. My only advice would be is to make sure you are getting the right treatment. All those drops per day seem so seem rather a lot. I know 2nd opinions are hard through Covid but maybe you could pay for a phone consultation? I think as long as you are doing all the right things now that’s what matters most. Take care.

[Noelhoney in reply to Vich81]

Hi Vich81...So you have reduced vision judging by your comment...is it in one eye or both ? Yes the drops are 2 in the morning, 2 In the evening and one before bed, my eyes are constantly red...sting and ache...plus they blur my remaining vision...drops need to be a life long commitment but they have their side effects...

[Vich81 in reply to Noelhoney]

I was diagnosed by chance at 23 and I’m now 39. I’m lucky as I still have a decent level of vision. Annoyingly it wasn’t the glaucoma as such that kind of messed up my left eye as I had a blood clot behind that eye and 27 injections and 4 years later, I’m still working to save it. I’m one of lives sensitive souls and anything preservative doesn’t go well with me so all my drops are preservative free. My eyes are no longer bright red and using a soft gel and Hyloforte throughout the day really help. If you haven’t already got a prescription for the drynesss and soreness then I really recommend you speak to your doctor.

[Fran555]

Hi Noel, I am really sorry that glaucoma has taken so much from you. Can understand why you can't go diving anymore, but could you play music for pleasure by touch alone? It might be really hard at first but hopefully you would adapt and regain some pleasure from it? I have started improving my listening skills in Finnish so that, if I lose my sight in the future, at least I will be able to listen to Finnish audiobooks and won't lose the language all together.

[Noelhoney in reply to Fran555]

Hi Fran, yes I still can play piano at home, it's about all I have left although my talent is not being appreciated by anyone but my cats ! And I have become reclusive as I still have some vision but it is horribly distorted almost unbearable out in the open so I don't go out much if I can help it....Im concerned as my life has no direction anymore, nothing to look forward to ! How does one cope with living without a goal ? Each day is the same...!

[Fran555 in reply to Noelhoney]

I need to think about this before replying.

[Tshape2022]

Hi

So sorry to read this Noel.

Neither my mother or father had Glucoma ,but I have recently been diagnosed with advanced secondary Glucoma which is caused by Pigmentary dispersion syndrome ...was a shock to me too .

One of my parents must have had pigmentary dispersion syndrome ...they were obviously just lucky it never caused Glucoma .

I'm 65 ..my hobbies were photography, teaching agility and competing .

Trying to come to terms with it is so hard .

[Susiepamela in reply to Tshape2022]

Hi am quite new to this website. I also have pigment dispersion Glaucoma which I am told is more unusual. I was diagnosed at 36 and use eye drops 5 times daily. There is a concern now that my sight won't last my lifetime as I am now 58 and had the condition 22 years. How are you?

[Tshape2022 in reply to Susiepamela]

Hi Susiepamela I do not think my sight will last my lifetime either but I'm trying to be positive.

Mine was diagnosed late even though I had been seen at the hospital...and had been told that my eyes were healthy and more less ..that I was wasting their time .

Obviously they weren't healthy at all.

Luckily the consultant I saw at my diagnoses has done a good job of trying to save what is left of my sight ...for this I am extremely grateful.

I have had early cataracts removed as I was told this should help .

It must have been very scary for you to diagnosed so young ...it seems we are just unlucky...as from what I have read Pigmentary dispersion syndrome does not always lead to glaucoma.it is good to hear from you ..someone with the same condition, thank you .