Newly Diagnosed

[LMEMDoooo]

I was diagnosed about 2 months ago and have been managing according to my consultant very well and he doesn’t want to see me until June however I can’t shake the dread that I am going to go blind and it’s affecting all of my life! How does everyone cope? X

[Eilidhmac]

Hi, sorry that you are feeling down at the moment. I was just diagnosed with suspect glaucoma yesterday and have been given drops. Are you on your own, I am, or do you have family. What age are you, I am 80 this year and have had various other serious illnesses lately so think that it is easier for me to accept the diagnosis. It is still early for you and it sounds like you are doing well so that is great and the fact that they have found and treated it is important.

[LMEMDoooo in reply to Eilidhmac]

thanks for reaching out I am only 42 and have a wonderful family but still feel very alone with it all. I have the gene so I should be thankful they found it and saved the sight they have but I can’t shake the feeling of dread! I have made some appointments with a counsellor and hoping this helps! I am here too if you want to chat xxx

[Eilidhmac in reply to LMEMDoooo]

A counsellor sounds a helpful step and I wish you well. I don’t have anyone in my family with glaucoma but my brother in law has been living a full, normal life, including driving with only eye drop therapy since diagnosis 25 years ago.

He is still going strong in all respects. So take heart. X

[Pete_uk]

Hi

I am the same age as you and when diagnosed a few years ago had similar worries at the start.

What really helped for me was talking to fellow patients in clinic ( long clinic waiting times help with that), getting the glaucoma UK newsletter, and getting amazing advice from the glaucoma UK sightline and buddy scheme.

All of the above helped normalise the situation, and put me in contact with a bunch of people who have lived with the condition for decades, and lived happy and fulfilling lives maintaining their sight throughout.

The current range of treatments are very effective and there are new developments being released all the time.You are fortunate to have been diagnosed early.

I try to put my energies into changing the things I can which are to take my meds, eat healthily, exercise and try and reduce my stress.

I hope that helps

[LMEMDoooo in reply to Pete_uk]

thanks so much for replying! I have lost 2 stone since my diagnosis and eat healthier and exercise which I didn’t do before I ll be honest! Reducing my stress is the next challenge! Perhaps a blood pressure monitor as someone suggested is a good thing? Xxx

[Tschuggen]

Hi, I understand how you feel. I was diagnosed recently and it came as a shock. I read that having high blood pressure was bad for Glaucoma and bought a monitor to check it out. Needless to say my pressure was through the roof and after a visit to the doctor I was asked to keep a note of my readings for a month. There came a stage when my body just couldn’t stay in that heightened state of stress and eventually I saw that my blood pressure was totally normal. I read experiences here that I can relate to and it helps to know that I am not alone. There is not a day that I do not think about it, but I take my drops and make sure I do things that make me happy. Hopefully time will help for you too.

[mrswaffle]

that was exactly how I felt! In March 2007, my optician suspected glaucoma and said I should see my GP. I did and he referred me to the hospital. I was given an appointment in June of that year. All the weeks in between the two appointments, as I woke up each day, I would open my eyes slowly, thinking I may not be able to see. Even after my first hospital visit, I still thought my sighted days were numbered. And yet, here I am 16 years on! I have struggled a lot at times, feeling very lonely; you’ve done the right thing coming here! Help, advice, support are all offered freely. Also, would echo what someone said about Glaucoma UK - very supportive and helpful organisation. Wishing you the best of luck!

[Olalflel]

Hello,

I was diagnosed last year and, as you say, it is a frightening situation to be in but please try not to focus on the worst case scenario - easier said than done, I know. My advice would be to join as much as you can (as other posters have said) and research the condition yourself. What has helped me is being really clear what the ‘plan’ is to manage the condition. This is important because there is lots of evidence to suggest that if managed well, many can find themselves stable with a condition that doesn’t worsen. Once you begin finding out about Glaucoma, you see that it’s a complex condition and every case is different - so there are different regimes for treatment and aren’t necessarily better or worse ones. I was given conflicting advice at two different appointments regarding SLT and drops, which is confusing. But - it made me make a list of question to take to my next appointment which really helped: the doctor knew exactly what I wanted to know and I feel happy that the care plan suits me - and - more importantly, is controlling my condition. I wish you well,