Been diagnosed since December just crying all the time. Convinced I will go blind
Not coping: Been diagnosed since December just... - Glaucoma UK
Not coping
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46 Replies
•
Hi I really feel your pain - I was diagnosed in August out of the blue and I understand the need for reassurance that nothing is getting worse. I was breaking down a lot and worrying every hour of every day - I have started therapy to help me cope which has helped me. The mental aspect of coping with glaucoma is huge. I felt very unstable for the first three to four months but am now starting to feel a bit better - as others have said you have to push for whatever will help you feel reassured especially at the beginning. It sounds like you are in a good position if your fields are good and caught early - good luck I know you will be holding out for Monday.
I should have said I am a 43 year old female so in the same boat as you of needing to get through hopefully many years !
• in reply toGobaith77
It’s so scary isn’t it. Xx Did they catch yours early
• in reply toGobaith77
Thankyou for your kind reply. I worry for myself and for my children I seriously will not live if I lose my sight I’ve made a conscious decision to end it all. I get hopeful everything will be ok and then I just think it won’t . I google way to much most of it is American. I know people on here are lovely and some have had it for years and still drive and do everything ain a normal life xx
Gobaith77• in reply to
Earlyish - I had lost a patch in my right eye by my nose when it was diagnosed but all going to plan since then. I hope you feel stronger after seeing the optician for peace of mind x
• in reply toGobaith77
Thankyou. It’s because my appointment got cancelled that I’m feeling like this. I’m glad yours is going ok x
Tricia3• in reply to
I really would suggest therapy. No one wants to go blind but there are plenty of partially sighted and blind people living happy & fulfilled lives. It’s quite hurtful to them to say it’s a life not worth living
• in reply toTricia3
I didn’t say that it was how I would feel. Sorry
Tricia3• in reply to
I really do think you should talk this through with a counsellor, this is scary and overwhelming and I think you need some help to put things into perspective. I did counselling for something else and it was amazing how much better I felt after even though the situation hadn’t changed
• in reply toTricia3
Thankyou your very kind x
Athena123• in reply to
Hi I’ve read all your posts !! You basically have written what I’m thinking ... scared out my wits
• in reply toAthena123
It’s so difficult I wish I could tell you different but people on here are lovely and do help. How long have you had glaucoma x
Athena123• in reply to
Just booked to go private for the initial test as the local hospital scared me about the numbing drops ... 
square one and scared stiff xx
It might be worth ringing Glaucoma UK next week to talk through your fears about losing your vision, they'll understand your worries and be able to help you come to terms with this, but I was registered blind. Good vision in one eye still, 31 October 2017, had 8 weeks phone counselling through RNIB April 2018 by which time I'd got to grips with everything, so please give yourself time to accept what's happened, yes easier said than done though x
• in reply toJennymary
Thankyou for your reply. Don’t think I will come to terms with blindness. How long have you had glaucoma may I ask. Your inspirational x
Jennymary• in reply to
I recently posted about my family history, might be worth a look, I was born with it I'm 4th generation my gran died in 1983 at that time I was already diagnosed and using drops, so the answer to the question it's lived with me for 58 yrs
• in reply toJennymary
Thankyou. Are you leading a normal can you drive I do know some people can when registered blind x
Jennymary• in reply to
No, I had to stop driving in 2017 otherwise I'm still working, self sufficient at home, due to Covid don't go out as much as I used to, but we're all the same on that prior, prior to being registered, driving, doing voluntary work I've always lived a normal life, it's just been adjusted due to not being a car driver, don't forget technology is improving all the time so just because its happened to me doesn't mean it'll happen to you, my mum spent the last 3 years of her life in a care home with dementia, but she could still see enough to recognise me despite living all her life with one good eye
• in reply toJennymary
Thankyou for replying again. It’s good to know you keep busy and are able to do so much. Xx
I was diagnosed with glaucoma 10 years ago, very scared and upset at the time as like you thought the worst, even though my mum had been diagnosed, with no loss of vision. When I was diagnosed I had lost some vision in my left eye, but has no effect on day to day activities. 5 years ago I had a trab as I lost some more vision in the left eye, but still only in lower quarter by nose, so no effect on day to day activities. The only advice I can really give is to find a good opticians that don’t mind you having regular checkups, and keep all hospital appointments, I now normally give them a friendly call 4weeks before appointment is due, and that seems to keep my appointments on track. All the best.
• in reply tonat10
Hi Thankyou for really my. Did your mum not lose any vision. Do you still drive do you mind me asking what age you are. I will certainly call the hospital again and definitely going to optician on Monday. Thankyou again x
I can only go on what my mum tells me as she still goes to her appointments by herself but she manages on 2 types of drops and still drives, she is 83. i am 56 so was diagnosed quite young, i still drive and i still go to the gym.
• in reply tonat10
Wow that’s amazing your mum does that. I’m also worried because at 52 it’s young to be diagnosed but I’ve spoke to people on here that we’re younger than mand you so hopefully will do just as well as them xx
Hello- just wanted to let you know that I feel your stress- I still remember the day I was diagnosed- but it was 17 years ago at age 50 and my visual fields are still fine and my pressures continue to be controlled with drops. It’s very scary in the beginning but with good care you should do well- it sounds like you were caught early - anyway just wanted to give you some positive reassurance!
All the very best!
• in reply toTraveller66
Thankyou so much. I really appreciate it. I think it’s not knowing how these drops are doing and the appointment being cancelled. Xx
Hi I can completely relate to your feelings as I felt exactly the same when optician diagnosed me nearly 2 years ago. I had always attended every eye test and no one had ever mentioned glaucoma or even high eye pressure to me. Luckily I changed opticians and was diagnosed with glaucoma on first appointment. I cried and cried, I was in complete shock. I was terrified of going blind too. I was and still am very active, yoga is only activity I have had to give up completely, there are just too many inclined positions. I do however still walk for miles each day with my dog and workout. I opted to get treatment privately initially while waiting to be seen on NHS. Mentally this was the best decision for me. I know this isn't an option for everyone but I could not handle the waiting. I actually now see my private consultant on NHS .
Finding optician and consultant you trust definitely made a difference to me .
I am 59 now with no family history of glaucoma.
• in reply to
Thankyou for your kind reply I am thinking of going private because I’m worried how long I will have to wait. Do you still drive is everything under control. It’s so scary. I just don’t want my children to have this. I’m in Bournemouth and I’m tempted to look for private. I’m meant to go to hospital in March but nothing from them and they told me they are only seeing urgent patients which I understand but how long do they expect me to wait. I’m off to optician tomorrow for pressure checks x
• in reply to
It's good you are going to see optician tomorrow to have pressures checked as it is scary not knowing whether drops are actually working or not. I don't drive I attempted to learn on several occasions but hated it.
Drops did lower my pressures but not to level my consultant wished as by time I was diagnosed I already had moderate damage in my right eye and not quite so bad in left. I've therefore just had surgery on right eye to hopefully reduce pressure and no longer need drops.
I live in Scotland and unfortunately waitlist for referrals even prior to lockdown was way too long in my area. My actual optician referred me to private hospital and recommended the consultant I now see.
I was crying all the time too and had to try and take control of the situation. I continued having private consultations even when I eventually got NHS appointment as the consultant wasn't a glaucoma specialist but a general opthalmologist.
Since December I am now under care of my private consultant but on NHS . Going private initially worked out well for me. Having faith in my consultant definitely made a huge difference to me. I am still scared of losing my sight but I can now mostly not even think about glaucoma and not allow it to ruin my life. Prior to appointments I do still panic and probably always will.
I hope my son end up glaucoma but I know that during eye tests when he gets to a certain age they should be on look out for it. Early diagnosis is best defence at moment.
Fingers crossed for your opticians appointment x
• in reply to
Thankyou for your kind reply I will definitely be looking to go private if hospital doesn’t see me soon x
• in reply to
How long have you had glaucoma. Did any of your family have it. X
• in reply to
I was only diagnosed April 2019 but I obviously had glaucoma for a while due to amount of vision loss I have. No previous opticians ever remotely mentioned glaucoma, eye pressure ,nothing which makes having a great optician now so much more important. Since commencing treatment I have lost no more vision which is a positive but my pressures though now in normal range are too high for my consultant. No one in family was ever diagnosed with glaucoma and my 3 younger brothers so far luckily are all ok too.
My first appointment at private clinic was £200 and then £100 for all follow ups. Prescription written there were all filled on NHS so for me going private was a lifeline . X
Would like to go private to x
Hey. I totally understand why you feel like this and you will find a way eventually to control your emotions around the thought of going blind. It isn’t healthy to worry about that so early on. Don’t get me wrong if I think about the fact that I won’t be able to see one day, I feel like I can’t breathe! You won’t be able to control those times where the pressure just won’t play ball but as long as you never miss a drop, always make your appointments and have a general idea of what’s happening with your treatment, you will be giving your eyes the best chance. Treatments and medicines are advancing. We are lucky compared to those before us that we have options to save our sight. I am 39 and I am not ready at all to admit defeat.
• in reply toVich81
Thankyou for you kind reply. How long have you had it did any members of your family have glaucoma. You are so right about we have lots of treatments xx
Vich81• in reply to
I was diagnosed out of the blue at 23. I have to admit my ignorance and thought that glaucoma was something in the third world. I had no dealings with it before. No one in my family, no friends of the family, nothing. I didn’t take it as serious as I should in the first instance. I also received bad advice from a new GP when I was pregnant a couple of years later which almost cost me my vision. Luckily someone somewhere was looking out for me and I escaped with minor damage. It’s been hard over the years at times but when things are stable I just try to lock it in a box in my head until the next appointment/event. I would have ended up severely depressed if I kept worrying about going blind or why wasn’t I one of the ones that developed it once they were 60+ and have lived their life without drops etc but having lost two friends at young ages, I feel lucky that that it is not life threatening. Sorry, went on a bit there haha! Every day I feel lucky I can still see - it might not be perfect but I can still see and that’s what keeps me sane x
• in reply toVich81
Oh bless you. Have you lost vision through it. It’s such a worry. Your so young. Not anyone in your family either. You have definitely put things into perspective for me even though I will still worry. Please keep in touch on here. Do you know what caused yours. Sorry I do ask loads of questions xx
Vich81• in reply to
Oh I don’t mind questions at all. There wasn’t anything like this in my early days and I could have done with it. I have always had bad allergies and was put on a steroid nasal spray at quite a young age. No doc will ever confirm it but I strongly believe that’s what caused it. I’ve read up on it. I would never have taken them if I had known the risk. My visual fields are holding up pretty well but there is damage to my right eye from when I was pregnant (I hardly notice it). I was unlucky enough to have a blood clot behind my left eye 4 years ago which really brought me down but thanks to my quick thinking and seeing a specialist, I managed to pull it back for that eye. Downside is I have had 27 Injections in it and still no end date for that. I still drive, work, read etc. My vision isn’t perfect but I know it could be a whole lot worse and I’m thankful. I’ve had a few lots of SLT and have a bleb in my right eye. The injections I have in my left eye gave me cataracts so I’ve also had that removed. Day to day I’m fine though and I really don’t dwell on it.
• in reply toVich81
Wow you have been through so much. I was wondering if my high blood pressure has caused mine. I really don’t know. I hoping that’s the case and my kids don’t get it. You truly are an inspiration. At such a young age it must have been difficult. Is it open angle glaucoma you have x
Vich81• in reply to
Well that’s always been in the back of my mind too. I was diagnosed with high blood pressure as a teen (I’ve never been hugely overweight). Docs have always refused to entertain that theory. I met someone at 22 who was pro contact lenses and it made me wonder about getting them so I went to my local Specsavers and through just the normal check, they notice a few burst blood vessels behind left eye. I had a referral to hospital which took 4 months but no way was I worried. It was such a shock when they told me what it was. The pressure in my right eye was 53. I could have gone blind any second it was that high. I think I just thought an operation could just “fix it”. I think routine pressure checks should be offered for all ages at opticians, it would certainly save sight for under 40’s.
• in reply toVich81
I totally agree pressure checks should be offered. I do tend to think my blood pressure has something to do with but who knows. I’m slightly overweight but I’m dieting now so has to get the blood pressure down. X
• in reply toVich81
How were you diagnosed out of the blue if you don’t mind me asking x
Thankyou for your kind message xx
Seeing about people with blood pressure issues, I was diagnosed in the late seventies, didn't get blood pressure issues until 2017, despite inheriting glaucoma from my mum who also had angina and a pacemaker
• in reply toJennymary
Oh maybe not then just a thought really x
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